“A dietary supplement aimed at children with speech delays is being deceptively marketed by NourishLife, LLC, and may be hazardous to children’s health, according to findings by truthinadvertising.org (TINA.org). TINA.org, a nonprofit based in Madison, CT,”
Update from Truth in Advertising
Children’s Supplement Deceptively Marketed
“The supplement, SpeechNutrients speak™ (“Speak”), which is nationally marketed by the Illinois company as designed by a pediatrician, claims it has a “patented nutritional formula” that is “clinically proven” to improve speech in speech-delayed children. But TINA has found that the patent application for the formula, which was filed by Dr. Claudia Morris, a pediatric emergency medicine physician, and Children’s Hospital & Research Center Oakland, where she was employed, was actually denied, and there are no competent or reliable scientific studies supporting the speech improvement claims. More alarmingly, the supplement contains extremely elevated levels of vitamin E, which medical studies have associated with hemorrhaging and an overall increase in the risk of death.” Read more
The following information is pulled from our groups for Cherab at one of our private or public support groups, and also shared on our document page. Note today Speak is also called SpeechNutrients Speak Smooth
The following information is on a fish oil mixed with mega amounts of vitamin e and vitamin k product called Speak which I do not recommend even trying is based on articles, vitamin supplement information from the NIH, personal experience from my own son, and reported results from various members of our private group as well as well as some results posted to facebook which I was able to access. Just to make it clear I do not recommend any parent of any late talker child put their child on Pharmaomega Speak unless their child has a metabolic disorder and a true vitamin e deficiency and is under the strict care of a medical doctor with frequent testing to protect the child from hypervitaminosis e and or hypervitaminosis K (vitamin poisoning ) I am personally shocked this product is still on the market.
The following was based on the Nourishlife speak capsules, prior to them making the Nourishlife speak™ Smooth – SpeechNutrients which I’m told is the exact same formula made as a smoothie. Please read and compare.
Please check the “upper tolerablelevel” here at this NIH site and you’ll see most children should not have anymore than 300 IU of vitamin E and look at the dosages of vitamin E (as well as vitamin K) in SPEAK
As the original pages from our old group here on facebook are now down and thus are no longer searchable online, a number of us feel it’s important to document the results and feedback about Pharma Omega Speak from our private group so anyone who chooses to explore this product can make an informed decision.. Email addresses are removed but can be provided at request. Our private group information has already been viewed by some from the media including
The Chicago Tribune wrote an article on this company and quoted some of our parents.
Speech experts are wary of untested supplement sold as a speech aid for kids with verbal apraxia
Chicago-area company defends its Speak product, but claims are troubling to some speech experts
September 16, 2010|By Deborah L. Shelton, Tribune reporter
“…
While some parents report benefits from the supplements, others have described adverse effects. Lisa Geng, who lives in Florida, said her son Tanner regressed after he took Speak at age 11.
Geng, a moderator of the CHERAB site, said apraxia made it hard for Tanner to express himself in words, which was frustrating for him and heartbreaking for her.
“He couldn’t smile or pucker to kiss,” she said. “He couldn’t form his mouth to make sounds.”
Tanner, now 14, has improved dramatically after undergoing intensive speech therapy as well as following a diet that includes whole-food nutrition as well as supplementation with essential fatty acids and essential amino acids, according to Geng.
Lori Malott, of Cincinnati, said her daughter Hannah, then 3, had seizures for the first time after taking Speak.
“I think the FDA should pull it off the market,” she said.
Malott and Geng both said they suspect the formulation might contain too much vitamin E.
A Speak capsule contains 250 IUs of vitamin E, and the package insert says “toddlers and small children may see the best results with 2-4 caps daily.” That amount would exceed the limits on vitamin E supplementation set by the National Institutes of Health for children age 1 to 3, which is 300 IUs a day. The tolerable limit for children 4 to 8 is 450 IUs.”
Speech Disorders/New patented product available for speech disorders
Expert: Alicia Rossetter, M.S., CCC-SLP – 11/19/2008
Question
Hi, I have been doing some research and have come across a new product that is now available for speech disorders. The company is offering a box complimentary to anyone that has a child that could benefit from it. The product is called speak and it is offered at www.speechnutrients.com. What is your opinion on this product? THank you, Judy
Answer
Thank you for the question, Judy. (Sorry for the delay in answering your question. I have been ill for the past few days.)
I’m so glad you asked about this product before giving it to your child.
I will begin by saying that I am obviously not a physician, and I do not have first-hand experience with this product, but I do have a general knowledge of nutrition, as well as research design.
Having read through the SpeechNutrients™ website, I have found some reasons I would not personally use or recommend this product.
1.) While it is true that research has shown a benefit for taking Omega-3 fatty acids, this company has mixed Omega-3 fatty acids with Vitamins E and K in VERY large quantities. The ingredients (fish oil, vitamin K, vitamin E, etc.) in speak™ are all generally known to be of benefit to humans, but there are no studies to show that exceeding recommended daily values in such large quantities is even safe—much less beneficial. Not to mention, there are no studies to show that these ingredients in such large quantities don’t have adverse interactions with each other.
According to the product’s chart, the recommended dose of 4 capsules per day (2 capsules twice per day) has children under 4 taking 10,000% of the recommended daily allowance of vitamin E (according to their information, no allowance has been set for children under 4). People aged 4 and over would be taking 3,330 % of vitamin E and 5,750 % of vitamin K. Since they are vitamins, the doses are not as regulated as medication, so 40 pound 4-year-olds are lumped in the same category as 250 pound, 40-year-old men.
Daily allowances are set for a reason… It’s never a good idea to take too much of any vitamin. The research I have in front of me (1) says, “vitamin E has been thought to raise blood pressure… large doses of vitamin E may have a mild immune-suppressing effect.” “High intakes of vitamin E oil can cause nausea, diarrhea, or flatulence in some people.” “Vitamin K is necessary for normal blood clotting.” This product’s web page states: “Physically, some children (and some adults) may experience loose stools…” –but they don’t say why. Obviously, it is because this is a very large dose of vitamin E.
Nausea, diarrhea, etc. are the least of the side effects associated with this product. It is very concerning that this is the list of side effects listed on the website: “elevated heart beat, fever, possible seizures, headaches, emotional outbursts and regressions in speech and behaviors.” The makers of this product report they, “do not know if any of these incidents are or are not a result of taking speak™.” This is because, as far as I can tell, the research has not been conducted.
2.) The makers of speak™ report, “Our initial intention was to create this formula for use in upcoming clinical trial research. However, during the process of collaboration, formulation, and observation and understanding the importance of timing, it became clear that the most responsible action we could take was to make this formula available to the public.”
They intended to do research? They thought it was responsible to make this product available before they conducted the necessary research? In the scientific community, this is not the way to go about responsibly distributing a product— especially a product meant for children. Optimally, research is done to ensure safety and effectiveness, then the product is released for the public.
It is important to mention: anyone can get a patent for anything that is novel—this does not mean that studies have been conducted in any way.
And since this product is only considered a “supplement,” the FDA does not play a part in regulating the safety or efficacy. The FDA website (2) says, “By law (DSHEA), the manufacturer is responsible for ensuring that its dietary supplement products are safe before they are marketed. Unlike drug products that must be proven safe and effective for their intended use before marketing, there are no provisions in the law for FDA to “approve” dietary supplements for safety or effectiveness before they reach the consumer.”
Normally, products claiming this type of success should have scientific-based evidence for findings. The makers of speak™ report that they are in the process of conducting a “Virtual Focus Group” where parents keep a diary and report every couple of weeks. This is not the optimum way of going about conducting research.
In order for the company to make the claims they do, they would need a speech and language professional, with an unbiased opinion, to test the child’s speech and language before, during, and after taking the product… otherwise, how can they claim it increases and improves these things? Additionally, a study of this nature –one where children ingest untested products—should involve regular check-ups from a physician to closely monitor adverse physical side effects.
As far as I can tell from the information they provided on their website, the makers of speak™ have provided no data in these regards for this particular formula.
This opinion is based on the information given on the SpeechNutrients™ website, documented nutrition research, and my knowledge of research design. As I mentioned earlier, I do not have first-hand experience with this product. As always, you should speak with your child’s physician before beginning, ending, or dismissing a supplementation regiment. If you have concerns about your child’s speech and language development, I recommend you seek an evaluation by a Speech-Language Pathologist.
I hope this was of some help to you.
(1) Haas EM (1992) Staying Healthy with Nutrition: The Complete Guide to Diet and Nutritional Medication. Celestial Arts, Berkley, California.
(2) U. S. Food and Drug Administration, Center for Food Safety and Applied Nutrition, Overview of Dietary Supplements. http://www.cfsan.fda.gov/~dms/ds-oview.html#safe
From ALL EXPERTS
http://en.allexperts.com/q/Speech-Disorders-987/2008/11/New-patented-product-available.htm
There are risks to even just 400 IU of vitamin E a day. “While in most healthy adults, short-term supplementation with up to 1600 IU of vitamin E appears to be well tolerated and have minimal side effects, the long-term safety is questionable.[1] Data suggest a possible increase in mortality and in the incidence of heart failure with long-term use of vitamin E (400 IU or more)
Meta-analyses from Miller and colleagues and from Bjelakovic and coauthors found that vitamin E supplementation increases all-cause mortality. These studies raised concerns on the long-term safety of high-dose vitamin E supplementation.[2, 10]
- Increased mortality – Miller’s meta-analysis looked at dose-response relationships between vitamin E supplementation and total mortality.[2]Nine out of 11 trials using high doses of vitamin E (400 IU or more) showed a significant increase in all-cause mortality in the vitamin E group. As the authors pointed out, however, the extent to which these findings can be generalized is unclear, because the high-dose trials were often small and were conducted on patients with chronic diseases.[2] In Bjelakovic’s meta-analysis, vitamin E, singly or combined with other antioxidants, was associated with a small but nonetheless significant (relative risk [RR], 1.04; 95% confidence interval [CI], 1.01-1.07) mortality increase.[10]
- Congestive heart failure – The Heart Outcomes Prevention Evaluation-The Ongoing Outcomes (HOPE-TOO) was a randomized trial examining the effects of 400 IU of vitamin E versus those of a placebo in patients with diabetes or vascular disease. After a mean 7.2 years of follow-up, vitamin E did not decrease the incidence of cancer deaths or vascularevents, but evidence indicated that it did increase the incidence of heart failure (reference range, 1.19, P =.007).[8, 11, 12, 13, 14, 15, 16, 17]
- Coagulopathy – An increased risk of bleeding has been observed with coadministration of vitamin E and warfarin, with an increased PT due to the depletion of vitamin K–dependent clotting factors. This does not occur in healthy individuals with normal vitamin K levels. Increased gingival bleeding also was observed in patients taking vitamin E and aspirin.[18] The Alpha-Tocopherol, Beta-Carotene Cancer Prevention Study showed that compared with placebo, alpha tocopherol at dosages of 50 mg/d increased the risk of fatal subarachnoid hemorrhage by 181% (95% CI, 37-479%; P =.01) in men aged 50-69 years who smoked cigarettes. The risk of cerebral infarction was decreased by 14% (95% CI, -25 to -1%, P =.03) in the vitamin E group, with no significant net effect of vitamin E on mortality from total strokes. These results had not been found in previous studies.[19, 20]
- Impaired immunity – An increased risk of sepsis occurred in a clinical trial (14% vs 6%) in which vitamin E was administered to premature neonates with a birthweight of less than 1500 g. When high-dose vitamin E of up to 30 mg/kg/d was administered to this population to prevent retrolental fibroplasia, necrotizing enterocolitis occurred. Incidence of necrotizing enterocolitis increased 2-fold (12%) in 2 studies; however, others have shown no difference. These findings may be secondary to the compounding effects of prematurity and the effect of vitamin E on the immune system. No other population has demonstrated these findings.
- Constitutional and GI effects – Fatigue and weakness were reported in 2 case series in which vitamin E was administered at dosages of 800 IU/d. The symptoms resolved with removal of the drug. Another study reported emotional disturbances in several women taking the same dosages. These symptoms have not been observed in other large series. Transient nausea and gastric distress have been observed in a few patients taking high dosages (2000-2500 IU/d) of vitamin E. Diarrhea and intestinal cramps have been reported at a dosage of 3200 IU/d. Other nonspecific, adverse effects of vitamin E, although reported only rarely, include fatigue, muscle weakness, delayed wound healing, and headache.”
And most recently it was found that taking just 400 IU of vitamin e daily ‘increases’ risk of developing prostate cancer. “A new study found that vitamin E, once thought to reduce the risk of prostate cancer, may actually increase the risk….The researchers found that men who took 400 international units (I.U.) of vitamin E daily had more prostate cancers than men who took a placebo. The report appeared on October 12, 2011, in the Journal of the American Medical Association.
The researchers don’t know why vitamin E increased risk instead of decreasing it. SELECT researchers are now measuring the amount of vitamin E, selenium and other nutrients in the blood of participants when they joined the trial to see if the effect of the supplements was affected by baseline levels of these micronutrients. Other researchers are looking at single-letter DNA variations called single nucleotide polymorphisms (SNPs) to see if genetic differences affect a man’s risk of developing prostate cancer while taking vitamin E.
“Based on these results and the results of large cardiovascular studies using vitamin E, there is no reason for men in the general population to take the dose of vitamin E used in SELECT, as the supplements have shown no benefit and some very real risks,” says Dr. Eric Klein, a study co-chair at the Cleveland Clinic. “For now, men who were part of SELECT should continue to see their primary care physician or urologist and bring these results to their attention for further consideration.” http://www.nih.gov/researchmatters/october2011/10172011supplements.htm
When I share on the history of the Pursuit of Research page about a product that caused a regression I don’t mention what it is because I didn’t want to call attention to it “Tanner didn’t always struggle with his weight, but a few years ago we put him on a product that had high vitamin E and K based on some beliefs at that time, and while some children had seizures in our group, my son had massive regressions, and..it seemed to affect his metabolic system. It took about seven months for his speech to came back, but the metabolic issue appeared to remain. We continued to feed him healthy, organic, and he was very active, but he couldn’t even lose a pound. We even bought him a large trampoline for the holidays last year, and every day he would jump up and down on that trampoline for over an hour and come in the house exhausted. No changes.”
NV Original is an all natural GFCF functional food that like fish oils has been successful nutritional strategy for many with various special needs like autism. All ingredients in NV original are certified foods that provide to the body a rich profile of all the essential amino acids and other essential nutrients. Perhaps it helped him because it supplied all the essential amino acids and other nutrients through it’s food ingredients.
I put this page up because FACEBOOK changed the groups and the original discussion boards for all groups is not longer available. This document contains everything that was on the discussion board that is no longer accessable through Google and other search engines. This information needs to be out there. Our children that had side effects can’t be swept under the carpet, and until someone does a study on the damages of mega vitamin e toxcicity in children, these side effects need to be known by parents who love and care for children with special needs -for their safety!
Here is the original information that was up on the old Facebook page http://www.facebook.com/topic.php?uid=115029735601&topic=14922 for the Cherab group (Facebook updated groups and we all had to update and we lost our discussion board but I’m sure if needed nothing is ever totally “gone” from facebook as we know)
- January 18, 2009 at 4:20pm · Mark as Irrelevant · Report · Delete PostLori Rosen Malott Hi,I can tell you from my personal experience with my own child that 3 days after giving her the speak product back in September, she starting having seizures. I then found out from other parents that they were observing similiar as well other side effects. If you look at the product’s website, you will see that the company has posted information about parents reporting side effects with their children. While some kids have done great, there is currently no way of knowing which children will do well and which children will be affected negatively by speak. Lisa Geng, the author of The Late Talker book and creator of this board, is one of the parents who reported that her son underwent severe speech regression, and to this day, 4 months after stopping the product, is still not quite back to where he was prior to taking speak. This is from their website (www.speechnutrients.com)“We have recently been advised that some families have experienced and reported unusual incidents occurring while their children were taking speak. We do not know if any of these incidents are or are not a result of taking speak™. However, in the interest of full disclosure and in good conscience we feel we have to tell you about these incidents that include: elevated heart beat, fever, possible seizures, headaches, emotional outbursts and regressions in speech and behaviors.”The difference from this product and typical fish oils that most of us are giving our children is that according to the FDA’s published guidelines, there is an extremely high level of vitamin E and K in this product that is above and beyond the recommended upper tolerable limits for children. It is not known if this is what made my daughter start having seizures but other than those high levels, my daughter has done extremely well on just regular Nordic Naturals fish oils prior to going on Speak.This Facebook Cherab group is an open public group forum. In the private Cherab yahoo group list, there is a file that list all of the parents’ reports and observations on their children who were taking the Speak product.If you go to this websitehttp://health.groups.yahoo.com/group/childrensapraxianet/You can join and then peruse the files to see what other parents have reported, both positive and negative.You should speak to your child’s pediatrician and any other doctor that is involved in his/her care and discuss the level of vitamin E and vitamin K in this product, as well as hypervitaminosis to make sure if this product is safe and appropriate for your child.Based on my personal experience, this is not a product I think is safe for kids and would not recommend it to other parents.I hope that helps.Lori
- January 18, 2009 at 4:58pm · Mark as Irrelevant · Report · Delete Post
- Kathleen G Although I did not put my children on this product, I do know people that did. In my opinion, I would NOT use this. Why not try the ProEFA fish pills that the majority of us started with and saw amazing results with no side effects. Please check any negative side effects that are reported with the omega speak and take these seriously. Seeing your child regress is heartbreaking not to mention scary and who knows if permanent. I hope others will jump in here to let you know what has worked best for their children. We started the ProEFA 2 times a day by piercing the gel cap and my kids actually took it on a spoon. Within 8 days, my twins began to speak although they had several months of intense speech therapy both in and out of our home with no success.January 18, 2009 at 5:02pm · Mark as Irrelevant · Report · Delete Post
- Robin K I tried this product with my 24 year old daughter for one month. I did see results but at the same time Melanie experienced headaches. We were not sure if that was seizure related or supplement related. We did not receive our second month supply so I decided to take Mel off of all supplements for one month and see how her headaches were. The following month due to my concerns of others that have seen side effects I started the ProEFA and ProEPA approach thru Nordic Naturals. I am very happy with the results we are seeing and Mel is not experiencing any headaches. I give Mel 2 ProEFA and 1 ProEPA three times a day. I give Mel her supplements each day without the worry of any side effects. I am told that we will not see the full effects of this for 6 months but the daily increases in Mel’s speech gives us hope for her future. Mel really wants to speak vs. use her communication device. That is a constant battle we fight here every day. I am also noticing increased motor planning as well.Before beginning the SPEAK product consult your physician and get their opinion. I wish I would have done this in the beginning as he would have just recommended the Nordic Natural approach. January 20, 2009 at 1:45pm · Mark as Irrelevant · Report · Delete Post
- Becky N I, thankfully did not put my son on this product when it was being offered. There were a slight handful of kids who did well on SPEAK, but the majority of them that were also on our yahoo list, did very poorly. All those who did poorly saw regressions of SOME sort, but some, way more serious than others, and definitely NOT worth trying to see if it would work or not. January 21, 2009 at 1:17am · Mark as Irrelevant · Report · Delete Post
- Lori M see this excellent response from a speech therapist to a person who asked about this product. http://en.allexperts.com/q/Speech-Disorders-987/2008/11/New-patented-product-available.htmExpert: Alicia Rossetter, M.S., CCC-SLP – 11/19/2008QuestionHi, I have been doing some research and have come across a new product that is now available for speech disorders. The company is offering a box complimentary to anyone that has a child that could benefit from it. The product is called speak and it is offered at www.speechnutrients.com. What is your opinion on this product? THank you, JudyAnswerThank you for the question, Judy. (Sorry for the delay in answering your question. I have been ill for the past few days.)I’m so glad you asked about this product before giving it to your child.I will begin by saying that I am obviously not a physician, and I do not have first-hand experience with this product, but I do have a general knowledge of nutrition, as well as research design.Having read through the SpeechNutrients™ website, I have found some reasons I would not personally use or recommend this product.1.) While it is true that research has shown a benefit for taking Omega-3 fatty acids, this company has mixed Omega-3 fatty acids with Vitamins E and K in VERY large quantities. The ingredients (fish oil, vitamin K, vitamin E, etc.) in speak™ are all generally known to be of benefit to humans, but there are no studies to show that exceeding recommended daily values in such large quantities is even safe—much less beneficial. Not to mention, there are no studies to show that these ingredients in such large quantities don’t have adverse interactions with each other.According to the product’s chart, the recommended dose of 4 capsules per day (2 capsules twice per day) has children under 4 taking 10,000% of the recommended daily allowance of vitamin E (according to their information, no allowance has been set for children under 4). People aged 4 and over would be taking 3,330 % of vitamin E and 5,750 % of vitamin K. Since they are vitamins, the doses are not as regulated as medication, so 40 pound 4-year-olds are lumped in the same category as 250 pound, 40-year-old men.Daily allowances are set for a reason… It’s never a good idea to take too much of any vitamin. The research I have in front of me (1) says, “vitamin E has been thought to raise blood pressure… large doses of vitamin E may have a mild immune-suppressing effect.” “High intakes of vitamin E oil can cause nausea, diarrhea, or flatulence in some people.” “Vitamin K is necessary for normal blood clotting.” This product’s web page states: “Physically, some children (and some adults) may experience loose stools…” –but they don’t say why. Obviously, it is because this is a very large dose of vitamin E.Nausea, diarrhea, etc. are the least of the side effects associated with this product. It is very concerning that this is the list of side effects listed on the website: “elevated heart beat, fever, possible seizures, headaches, emotional outbursts and regressions in speech and behaviors.” The makers of this product report they, “do not know if any of these incidents are or are not a result of taking speak™.” This is because, as far as I can tell, the research has not been conducted.2.) The makers of speak™ report, “Our initial intention was to create this formula for use in upcoming clinical trial research. However, during the process of collaboration, formulation, and observation and understanding the importance of timing, it became clear that the most responsible action we could take was to make this formula available to the public.”They intended to do research? They thought it was responsible to make this product available before they conducted the necessary research? In the scientific community, this is not the way to go about responsibly distributing a product— especially a product meant for children. Optimally, research is done to ensure safety and effectiveness, then the product is released for the public.It is important to mention: anyone can get a patent for anything that is novel—this does not mean that studies have been conducted in any way.And since this product is only considered a “supplement,” the FDA does not play a part in regulating the safety or efficacy. The FDA website (2) says, “By law (DSHEA), the manufacturer is responsible for ensuring that its dietary supplement products are safe before they are marketed. Unlike drug products that must be proven safe and effective for their intended use before marketing, there are no provisions in the law for FDA to “approve” dietary supplements for safety or effectiveness before they reach the consumer.”
Normally, products claiming this type of success should have scientific-based evidence for findings. The makers of speak™ report that they are in the process of conducting a “Virtual Focus Group” where parents keep a diary and report every couple of weeks. This is not the optimum way of going about conducting research.
In order for the company to make the claims they do, they would need a speech and language professional, with an unbiased opinion, to test the child’s speech and language before, during, and after taking the product… otherwise, how can they claim it increases and improves these things? Additionally, a study of this nature –one where children ingest untested products—should involve regular check-ups from a physician to closely monitor adverse physical side effects.
As far as I can tell from the information they provided on their website, the makers of speak™ have provided no data in these regards for this particular formula.
This opinion is based on the information given on the SpeechNutrients™ website, documented nutrition research, and my knowledge of research design. As I mentioned earlier, I do not have first-hand experience with this product. As always, you should speak with your child’s physician before beginning, ending, or dismissing a supplementation regiment. If you have concerns about your child’s speech and language development, I recommend you seek an evaluation by a Speech-Language Pathologist.
I hope this was of some help to you.
(1) Haas EM (1992) Staying Healthy with Nutrition: The Complete Guide to Diet and Nutritional Medication. Celestial Arts, Berkley, California.
(2) U. S. Food and Drug Administration, Center for Food Safety and Applied Nutrition, Overview of Dietary Supplements. http://www.cfsan.fda.gov/~dms/ds-oview.html#safe
http://en.allexperts.com/q/Speech-Disorders-987/2008/11/New-patented-product-available.htm
The following are actual compiled results out of all the initial parents who tried a free version of Speak from the Cherab group. The following information has been submitted to various health organizations including the FDA.
If you have given your child SPEAK supplements, please read this!
Dear group members,
I am outraged that despite phone calls to parents on this group list
whose children’s suffered negative reactions to SPEAK, as well as
emails and a statement on the company’s website about reports of
children experiencing reactions to SPEAK, Ms. Vannice continues to
take the stance that no negative reports have been received directly
by the company. In addition, Ms. Vannice and the company continue to
perpetuate the perception to the public that our children’s unusual
reactions are unfounded rumors. As a result, I have compiled all of
the reports that have been posted on this group list. After your
feedback, I will send it to Nourishlife so that they have received an
official report of our experiences.
All of the compiled reports include positive, neutral and negative
observations. I will be sending each category as a separate posting
since it is too long to post in one email. Further below, I listed the
names of parents who posted so you can quickly see if I included your
information or not. Please review the next several postings from me
to make sure your names and statements have been included and are
accurate. I reviewed all of the postings going back to September
10th, but I may have missed a few postings due to the huge number of
entries on the group list. If this oversight did occur, please email
me directly and I will be sure to look up your posting and include it.
Parents and caregivers, if you have not posted anything yet, if you
have positive, neutral or negative experiences, or haven’t posted a
current follow up on how your child is doing with SPEAK, please share
with us so we can be informed. The compilation was done in
chronological order and separated into Positives, Neutrals and
Negative comments. Some parents’ postings will fall into two
categories since some started out in one category and later in another
category.
Lori
Negative comments on SPEAK supplements
This is a compilation of comments posted on the group list. It is not
comprehensive, if you think your comment was overlooked, please
contact me directly and I will search for your posting and include it.
Some parents have several postings and they are included under one group.
Lori
NEGATIVE
my feedback on speak supplements
Posted by: “seeramona” lorirosen@
Mon Sep 29, 2008 11:55 am (PDT)
Hi,
we have been selected to be in the clinical trial, my daughter
started the speak supplements a week ago today. Prior to that, a year
ago, I had given her pro efa jr. two capsules a day and saw no
improvements. I stopped and waited about 6 months and then started
giving her two capsules of ProEFA, with some nice surges, and was
getting ready to supplement with one capsule of Proepa when we got
selected for the trial so I started giving her the Speak capsules
instead.
My observations so far, which I’ve been keeping in a journal, is that
every single day, she has said one or several new words that she has
never said before. My husband and my daughter’s SLP has been very
impressed and I continue to be amazed. I had thought she was a non
responder when in fact she needed a higher dosage than what I was
giving her.
I have only been giving her 2 capsules of speak since last Monday and
am not sure when to increase her to a second dosage in the day. My
question to those of you in the speak trials is that have you gotten
any guidance for this trial? All I got was an email and register on
the website. I am not sure if we are to record all observations of
our child, the amt we’re giving and so forth…it doesn’t sound like
a trial to me if we’re selected just to give them the supplements,
don’t you think?
Second, after reading this post below, I started to wonder about my
daughter because on day 3 and day 4, for the very first time ever, my
daughter had an “episode” of where she was sitting and her body kind
of convulsed very briefly a few minutues apart. I took her ot the dr.
on Friday who didn’t think the speak supplements were the cause, but
scheduled an EEG just to be sure there wasn’t any seizures going on.
Anyone else experience this?
Thanks
Lori
NEGATIVE
— On Mon, 9/29/08, Christian wrote:
From: <bug3235@…>
Subject: [childrensapraxianet] Re: my feedback on speak
supplements/seizures????
Date: Monday, September 29, 2008, 6:50 PM
Hi,
We also have been asked ot join the focus group so we did. After much
frustration with guessing doses on the PROEFA/EPA I decided that this
would be a
great change for us.
Let me give you some background on us…Christian is a 28 month old
boy with
apraxia and spina bifida. His SB has not really been a problem. He
has hit
all his milestones on time EXCEPT for walking. We are working on
independent
walking right now!! 🙂
Well, we started it and on the fourth day he was acting strange. We
went to
therapy and I could hear him screaming loudly for no apparent reason. He
continued to scream alot while we were at home too. ODD behavior!!
He was
acting like an autistic boy. So, at the end of the day I had decided
to stop
the SPEAK supplement because it scared me. I was thinking that maybe
he had
too high of a dose of Vit E or something.
We woke up the next morning very early because Christian was acting
like he was
feeling sick. I could not put my finger on it but I KNOW my son and
something
wasn’t right. I held him and hoped that he would sleep it off.. He
quickly started burning up and as I got the Ibuprofen on board, 10 minutes
later, he seized. Christian has never had seizures! It all passed and we
ended up going to the DR. She said the keep his fever down and watch
him. HE
is still feverish but there are no other symptoms. ???? I don’t know
what is going on with him but I am praying that it is some strange
virus. His
fever is not as high as it was when he seized but it stays around
99-100. I
don’t know what normal temp is for a kid? Is it the same as adults?
Well, I am letting his system rest from all the oils, and supplements
in hopes
that he can get rid of whatever is ailing him. I just thought I would
share
with you my weekend drama.
NEGATIVE
— In [email protected], “Maria” < mgal33@
wrote:
Mon Sep 29, 2008 8:36 pm
Re: Speak supplement ?
Claudia, thanks so much for staying connected and sharing your insight
on the SPEAK supplements, now that a few of us have been able to try
them. In the interest of providing what I’m sure is valuable feedback
to you and to the group, I’d like to (gently) share that my experience
so far has been disappointing.
My daughter Evoni (20 mos) has been taking 2 SPEAK caps per day for 8
days now. Prior to starting SPEAK last Monday, we had started her on
2x day Omega 369 (for 10 days); the day before we started SPEAK we
managed to squeeze in one EPA in addition to the 2x Omega 369.
Almost immediately after starting the SPEAK, Evoni lost all the new
babbling and new mouth play that she acquired, to our delight, after
starting the Omega 369. She has also become extremely emotional and
erratic, weeping and sobbing without apparent reason (a type of
genuine non-pain induced crying I have never before heard from her),
and she sweats uncontrollably. Her sensory issues have become much
more pronounced — which also occurred during the first 3-4 days of
the Omega 369 but quickly dissipated.
More significantly, she seems to experience small but somewhat
frequent seizures of varying force. She has no history of seizures
that I’m aware of. Her eyes roll up and she falls to the ground and
spasms. Other times, she starts to spasm when she tries to come to a
standing position and is unsuccessful pulling up (she does have
hypotonia) and just stays on the floor spasming.
I’m concerned that the Vitamin E dosage or the Vitamin K are
contributing to her regression. Do you have any thoughts as to what
components in SPEAK might be causing this outcome? I had intended on
waiting the side-effects out to give the product a respectable chance
to do its thing. However, the seizures have me extremely concerned and
indicate to me that, for my child, there is a toxic element to the
supplement. Darn! I really had my hopes up for this. Have you received
any similar feedback?
Thanks Maria
NEGATIVE
— In [email protected], “kiddietalk”
<kiddietalk> wrote:
Mon Sep 29, 2008 9:42 pm
>
Re: Speak supplement ?
Hi Melissa,
We didn’t have any seizures or signs of seizures like the other 3
families that just posted but Tanner is 12 years old and 5 foot 6
inches tall.
Tanner started on Speak at 6 capsules plus I gave him 4 capsules of
the high gamma tocopheroal because I was so afraid of regression as
he did any time I attempted to raise the level of alpha E -so with
the 1.500 IUs of alpha tocopheroal and the 600 mg of gamma
tocopheroal plus the 800 extra of each he was on what I was not aware
a crazy too high dosage of vitamin E. For 5 days he was on that with
no regression -but no surge either. On the 6th day he woke up at 4
AM and was vomiting pretty much all morning with loose stools too. I
thought he had a bug and kept him home from school and didn’t give
him any Speak or anything else. As the day went on he seemed better
and even started eating again and seemed fine. I gave him only 3
Speak that day.
The next morning I only again gave him 3 Speak and nothing else. He
went to school and seemed fine in the AM but the school called after
lunch -it was a hot day and Tanner was outside playing basketball and
he felt like he was “going to puke” so I went to school and picked
him up thinking once again it just had to do with the fact he had
been sick the day before. And perhaps that is all it was. On the
way home from his school I spoke to Claudia and she said only give
him the Speak and not the extra vitamin E anymore. Tanner’s
regression started once I just put him onto the pure Speak. His
speech got what I call “bumpy” pretty rapidly which is our first sign
of regression for him and I realized the dosage or formula of vitamin
E was all wrong for him.
For the next week or so I put him on 4 Speak with 2 high gamma from
Vitamin World which slowed the regression down -but each day it was a
bit worse. I know -why did we continue? Tanner wanted to try it as
he was excited too about trying Speak. We were giving it time and I
thought we could figure it out. I went out and bought an almost pure
gamma but that seemed to make things even worse. Count another 3 or
4 days into trying different ratios of gamma with the formula. I
even brought it down to 2 Speak, 2 ProEFA, 1 ProEPA, 2 of the almost
pure gamma E…and one day with the high gamma…so much for making
things easier!
On the day we decided to stop (Tanner asked to stop) Tanner was
standing out in our driveway wanting to tell me something before he
left for school. He opened his mouth and started groping but nothing
was coming out. Even just writing this now it horrifies me that I
let it go on that long. He seemed apraxic again for the first time
in years. Later that day I had a school meeting and the teacher told
me that Tanner who is usually “talkative” in school with everyone
didn’t say a word almost all day. He became very quiet as he is very
aware of his speech. The next day we went back to 4 ProEFA and 2
ProEPA no vitamin E at all. but it took days till he was anywhere
near where he was before and he’s not 100 percent back in speech yet
but I am not sure how long the vitamin E stays in the body.
On one of the next days we went on a class trip and I drove to the
Indian River (where I had to drag a net through God knows what and
found out later there are “spotted eels”
http://www.softscuba.com/pix/Altriethspottedeel.jpg in the Indian
River lagoon!!!) with Tanner and other boys and girls in his class
and while everyone was talking….I mean we found jelly fish and
shrimp and baby flounder and a blow fish and a pipe fish -stuff that
made me cringe for sure…Tanner was for the most part quiet. Not
saying much of anything. He laughed -just didn’t talk. On the way
home 2 of the boys in my car asked Tanner why he was so quiet and he
just shrugged.
Clearly Speak is not the formula for Tanner. Based on what I read
about vitamin E (which I have to say I didn’t explore until after
Tanner’s regression unfortunately) I’m not comfortable keeping my son
on any type of mega dosage of vitamin E for extended periods of time
anyway. He tested normal in vitamin E and clearly regressed when put
on a high dosage. I searched under “hypervitaminosis E” and while
it’s rare – it’s a great concern to me. While some may not respect
the dosages set by some organizations -the dosage of vitamin E in
just 2 capsules of Speak is over the tolerable daily upper limit of
dosing for infants to 8 year old children according to the Food and
Nutrition Board of the Institute of Medicine and the dosage of
vitamin E in 4 to 6 capsules of Speak is over to 5 times over the
tolerable daily upper limit of dosing for infants to 18 year olds
according to the Food and Nutrition Board of the Institute of
Medicine
http://ods.od.nih.gov/factsheets/vitamine.asp#h7
Of course there is nothing wring with vitamin E but you should
consider that for those of us that have used fish oil therapy we have
found that we use months or even years of daily-dose regimen. Again
from what I have read too much vitamin E can lead to hypervitaminosis
E which is toxic to our body with prolonged use and I read things
about myopathies, myalgia, necrosis -I’m sure they are all rare but
I’m sure giving children/preschool children high levels of vitamin E
isn’t the norm either. Both vitamin E and vitamin K are forms of
vitamins we call fat-soluble vitamins (the rest are Vitamin A and D).
I’ve read that fat soluble vitamins are metabolized and hydrolyzed
and stored in the liver. I was told that the dosage of vitamin E in
Speak is not based upon the findings in this group but I was told
it’s based upon science. For my own research on my own son it’s a
thumb’s down. Perhaps it will work for some of you but I’d run it
past your child’s doctor.
I did not read anything about seizures being linked to high dosages
of vitamin E -just the other things. But for sure I’m not a vitamin
E expert. I’m just a Tanner expert.
=====
Lisa
Update on Tanner -and note about vitamin E
Posted by: “kiddietalk” kiddietalk@
Thu Oct 2, 2008 4:44 pm (PDT)
As many of you know my son had a massive regression in speech to the
point of groping on Speak. He’s been off for 7 or 8 days now and
even though much better his speech is still not where it was prior to
Speak which greatly concerns me as he typically responds to changes
in supplements right away -check the archives most of our kids do
once back on the “right” oils. I’m guessing it’s due to the vitamin
E and K being fat soluble and still in his body somehow.
I thought today perhaps he still needs the same vitamin E he was on
before because prior to Speak Tanner was on the 4 ProEFA and 2 ProEPA
and the high gamma E from Vitamin World….but at the same time
another part of me didn’t want to give him any vitamin E at all for
at least a few months because I wasn’t sure if he already had some
sort of vitamin poisoning (and because who can I ask as right now I
trust nobody when it comes to this unknown path) I gave Tanner today
1 capsule of high gamma E from Vitamin World which means 200 IU of
alpha and 200 mg of gamma with his 4 ProEFA and 2 ProEPA
Tanner’s speech regressed again today back to being worse. My
husband is requesting I post this here to let the rest of you know
how severe this really is to document this and to try to help prevent
what has happened to my son Tanner from happening to others. Glenn
is worried that I somehow neurologically damaged Tanner as we don’t
really know what is going on -and who do we again ask?!! Yes Liz I
almost feel as stupid as drinking Joy dishwashing liquid as you say
thinking it was lemonade because there was a pretty picture of a
lemon on it.
This is not a “indirect negative report, rumor or innuendos” this is
my son Tanner’s dramatic regression on a supplement that contains the
exact same Omega 3 and Omega 6 formula that I have had him on since
2001 that somehow ended up in a supplement with megadosages of
vitamin E and K that for the first time in his life brought him back
to groping in speech. Thank you. And yes I am PISSED.
Tanner has asked for me to come to his school tomorrow to talk to his
teachers and friends in class about why his speech has regressed so
dramatically as he doesn’t really know how to explain it -especially
right now.
Re: Question about SPEAK/Fish oils
Posted by: “kiddietalk” kiddietalk@
Mon Oct 13, 2008 5:29 pm (PDT)
Kris I am so sorry to hear this. It’s been about a month for us and
Tanner isn’t back yet either. I agree, it is a painfully slow
progress, but I do hope Tanner and all of our children that regressed
will be back to where they were before. Please tell me that you are
not giving Katie that one high gamma vitamin E with her ProEFA and
ProEPA. Even if it was OK before in my opinion right now it’s
probably the last thing she needs is extra vitamin e. (there’s
already some vitamin E in the fish oils anyway). Tanner regressed
back when I tried that one day to give him that one capsule of high
gamma vitamin E with his ProEFA and ProEPA so based on him and in my
opinion I would just stick to the fish oils for two reasons -the mega
dosage of vitamin E and K are probably still in her body since both
are fat soluble vitamins, and also as I’ve posted since 2003 the fish
oil’s over a few months create a vitamin E deficiency (which for us
is something I’m waiting for!!!)
I asked Tanner if he had any suggestions and he recommends the “bath
stuff” (Epsom salt baths) for your daughter.
With Tanner too he’s not back to where he was before but I am hoping
that he will be. Someone mentioned to me that it may be permanant
damage and I started crying- I pray not. Tanner has one of his
friends over tonight but earlier when he called his friend’s house he
couldn’t say what I told him to tell his friend’s mother and put me
on the phone to say it for him (those of you that listen to him on
the talking page or that read my messages about him here know this is
so not Tanner). On the drive over he was talking and stopped and
Dakota said “Are you having trouble saying a word again?” Tanner
said “yes” So Dakota said “Tanner spell it” Tanner said “Mommy can
you say the letter that is after ‘a’?” So I said “B?” He said “Yes
I can’t say that letter. That letter then ‘u’ and then ‘t'” At the
same time Dakota and I said “But? You had trouble saying but?”
Tanner told us today at school he had to say “line call” for
something and everyone had to wait for him to try to say it because
he couldn’t say the “c” sound (the K sound for ‘call’). After I
dropped Dakota off Tanner and I were in the car saying his sounds
just like I used to do with him when he was a little peanut ” b b b b
b b b b” “be be be be be be” etc.
You may think you know but you don’t know how disgusted I feel that I
know I gave him the speak that made him regress -I had no idea that
his regression would last. But honestly again -who can you ask? Who
else in the history of time put their child on the mega dosages of
vitamin E and K that are in speak? I guess the only good thing for
Tanner was that he was only on it for 2 weeks. In my opinion there
should be warning signs of hypervitaminosis/vitamin poisoning with
that product. I was not even aware of any risk until I found it on
the internet myself when I searched after Tanner regressed.
Based on what I am experiencing with Tanner it tells me that we do
have to go back to basics -the regression for him was that great.
Glenn said it set Tanner back years. I told Tanner today that we
taught him how to talk once and we’ll do it again.
One more important point to you Kris and everyone. Continue to post
your negative or positive reactions to speak here so we are all
aware. Based on the recent emails from Gretchen that said the
company has not received any negative feedback be aware that
discussing something on CHERAB is not communicating with the company
and apparently the phone calls some of you have received and posting
something on the speechtrial.com/forum or emailing Gretchen are not
considered communicating with the company as well. All of us will
need to put in writing and email the company directly at
[email protected] (info at speechnutrients.com) and share our
positive or negative experiences in the interest of full disclosure.
Only then will the company consider it direct communication to them.
NEGATIVE
From: jorgolini < jvervier@ >
Subject: [childrensapraxianet] feedback on Speak
Date: Tuesday, September 30, 2008, 12:18 PM
Hello,
My 5 year old son started with 2 capsules a day a week ago and I
increased him to 4 caps a day on Sunday. Here’s what I’ve seen:
spontaneously saying ‘bye-bye’ (he’s been able to say it for a long
time, but only prompted. Mama and Dada are his only unprompted words).
Refusal to take his prescription meds–very scary as going cold turkey
could produce some terrible side effects. More emotional–both highs
and lows. I wonder if the high vitamin E is somehow contraindicated
for the meds he’s on? I will stick with this dose through the end of
the week, but am getting nervous. Will probably switch back to EFA/EPA
if he doesn’t calm down by then.
~Jenn O.
NEGATIVE
Re: Speak supplement ?
Posted by: “Nadine Kocho” nadineck@ nadineck
Tue Sep 30, 2008 7:39 pm (PDT)
Hi,
Just throwing in my 2 cents… I also googled hypervitaminosis E, and
found
some disturbing stuff. My son has Apraxia, and was born with a heart
defect,
AVSD, which has been repaired, but he still has regurgitation in his
mitral
valve. Came upon the following sentence: “Data suggest a possible increase
in mortality and in the incidence of heart failure with long term use of
vitamin E (400IU or more) in patients with chronic diseases.” These
results
are from adult case testing… my peanut is 3.75 and 31lbs.
My googling results, coupled with the reports from other parents of
seizures
is enough for me to stop SPEAK and go back to my ProEFA and ProEPA
concoction (without the vitamin E which I had added,) even though we are
only on Day 2 of SPEAK. He had surged with the fish oils, and we were
happy
with his progress, so while I am grateful for the efforts that went into
creating the product, and while my son may be one that SPEAK would do
wonders for, there’s enough concern for deleterious effects, that I’m not
willing to take the risk.
As always, I am so grateful for this wonderful resource… and to all of
you.
Nadine
NEGATIVE
Speak supplement Update
Posted by: “Robin C. Ketchem” rcketchem@
Wed Oct 1, 2008 6:43 am (PDT)
I believe my daughter Melanie is the oldest person participating in
the Speak Supplement Focus Group at the age of 24. We have had some
very amazing results with this supplement in the last 9 days but we
also have some concerns as well.
At the age of 17 I gave Mel one Pro EPA to start with and saw some
results but with everything being so crazy with the lawsuit against
the school district I stopped them. I was so focused on just trying
to keep Mel home and safe thru the court case
that everything else went on hold. We did win the lawsuit but there
was so much trauma associated with those years that we were just
focusing on Mel surviving at that point.
We have not had Melanie on supplements for a very long time as we
were just trying to focus on other issues that Mel was having. Mel
suffered 10 grand mal seizures about 2 years ago and we brought her
home from the hospital basically to pass away. When
they discharged Mel from the hospital she could not even walk. All
motor planning skills were lost. I truly thought this was the end
for Mel. Mel bounced back within 2 month and regained everything
that she had lost from her seizures. Her doctors have never
seen anything like it. They are still trying to figure out how Mel
survived. About a month ago I decided it was now time to try the
fish oil to see if we could help Mel with her speech. I finally felt
we were at a place in Mel’s life that everything was settled down enough
that we could pursue more speech. I contacted Lisa for advice on the
amount of fish oil I should give to Mel. This is when I was told
about the Speak supplement. I was so excited to have Mel try it as I
felt this is the right time to focus on supplements.
We immediately saw improvements with Mel’s speech and see
improvements each day. Melanie is using new words and phrases each
day and acts like she has been using them forever. Melanie never
wanted to practice her word cards it was always a constant
struggle with her to the point I just put all cards away. The second
day of Speak she pulled out all of her word cards on her own as she
watched me put them away and got them out of their boxes. She handed
them to me and we started to practice. She now has
them in stacks all over the house and picks them up to practice with
anyone thru out the day. I keep a notebook and anyone that comes
into our house for a visit will write in the changes they have seen
as they have know Mel before and now after the supplement.
We are also seeing better motor planning and more attempts to help
with things around the house. I am one to talk to Mel on a constant
basis now Mel is returning the favor as she talks from the time she
gets up until she goes to bed. She will say all words that she knows
over and over as they are now becoming clearer and practicing new
ones as well.
I do have some concerns though and have spoken with one of Mel’s
doctors already this morning. We have noticed since Mel has been on
the Speak she is experiencing diarrhea, headaches, stomach pains,
nervous motoring, and we believed she had another
seizure while she was sleeping because when she woke up she had a
bruise over her left eye. Mel’s headaches are to the point that they
get so severe that she gets tears in her eyes and is now holding her
head and telling me about the pain. Mel’s doctor said he knows
the fish oil would not harm Mel but is concerned with the high level
of Vitamin E and believes that there really needs to be a modest
approach when taking the Vitamin E. We have agreed that Mel needs
to continue on fish oil but not the high level of Vitamin E. I am going
to make some changes that Mel’s doctor and I agreed upon and see
what happens. I will give my new approach the same amount of time
that I gave Speak and that is 9 days and then I will post my results.
While we are enjoying the new Mel with all of her new speech we want
to make sure she stays healthy. I just have too many concerns at
this time to continue with the Speak Supplement.
Robin
NEGATIVE
Re: Response to news of the 4th possible seizure and to…
Posted by: lindaj14@
Wed Oct 1, 2008 10:48 am (PDT)
Lisa
Hi, In reading you message I want to let you know that my daughter
Jennifer
is on Speak for 2 weeks now and yesterday I had to take her to the heart
doctor. Her school called me and the nurse said that her heart was
racing for 60
to 80 and then to 120 in 15 second and that I should take her to the
doctors
right away.
I am going to stop the Speak until I see the Neurologist in the coming
weeks. I am very concerned about the mega doses in Speak. I know
vitamin K affect
the heart so I am stopping it.
Thanks for your email
Linda
NEGATIVE
From:
Sent: Wednesday, October 1, 2008 12:02:04 PM
Subject: Re: [cherab] Important message about Speak
Lisa,
I am sick from your e-mail; I just spent nearly 900$ for these
supplements also assuming they were safe and effective. My son has
been inexplicably clingy, waking up at night crying and off balance
with what I also perceive as a language regression. I am particularly
sick because last month he was in status epiliepticus which was
sudden, unexpected and devastating requiring an ICU stay- I also had
been giving him high doses of vit E 2800 IU and 3 doses of PUFA and
vit K and have been driving myself mad wondering if this was related
(he wasnt yet on SPEAK). I also was going on re-assurance that this
was safe. I am gettin off SPEAK immediately until further notice and
going back to 1 dose of PUFA and 1 vit E/day- a safe supplement. What
dose did your son Tanner take prior to changing to SPEAK? He
obviously benefitted?
I look forward to your response as I am very worried about this
Best
(From a parent – name and contact information asked to be
withheld)
NEGATIVE
Re: SPEAK–stopping speak today
Posted by: “taranowakowski@
Wed Oct 1, 2008 7:05 pm (PDT)
Hi everybody. I have been lurking around this site for a while now. I
have a 28 month old little girl Addison. I had never tried the fish
oils because I was unsure of the proper formulas. I also thought she
might be too young and if truth be told I was afraid she might be one
of the few non-responders and I didn’t want to be let down. When I
finally came to terms and decided to give it a try we were picked for
the SPEAK focus study group. I was thrilled because I now thought she
would be getting the proper formulas. Stupidly I never check into the
vitamin e or k info because I just assumed it would be right. I have
to tell you its been hard to understand the formulas because everybody
seems to give a different answer. When I ask I’m usually told to look
in the archives (more confusing) I have been giving my daughter 2
pills of speak a day for 7 days and have not seen really any changes
in her until today. She seemed a little out of focus at speech therapy
. When she was asked which farm animals she wanted to play with she
couldn’t seen to get any sounds out so she would just point. Very
unlike her. Usually she can get the ca for cow, da for duck, ca for
cat. Today she just sat there. I do have to say she missed her dose of
speak yesterday and I don’t know if that had anything to do with it
but after reading all the posts today I am taking her off.
PLEASE PLEASE PLEASE- Explain what and how much fish oils to start her
with. She is 28 months old and weighs about 32 lbs. If I should be
adding vitamin E just tell me the brand and how much. Thanks so much.
NEGATIVE
October 1, 2008
Original message from “kristinakate1213”
just our experience…
DD kate took it for two days…she is 3 and previously on 4 ProEFA, 2
ProEPA, 1 high gamma E, and Super-Nu-Thera….did very well, and has
exhibited good progress.
began 2 SPEAK per day for two days and reverted to an infant…i was
told by her special ed teacher and PT that she was wobbly, and would
follow commands but when told the same command appeared to not
understand the command and would stare blankly. she screamed bloody
murder at the drop of a hat ( for a little girl that rarely sheds a
tear and is constantly laughing!) she also developed some serious
bruising on her legs!
kate has 3 year old receptive lanuage, and her hypotonia was decreased
to the point that she was
almost jogging prior to SPEAK…this stuff is POISON! after 3 days of
being off of it, she is still not back to her norm, and i have
discontinued her E as she is probably has TOXIC levels.
needless to say, we are discontinuing this supplement, as i too, read
up on the dangerous levels of E and the resulting consequences of
hypervitaminosis…
i hope that this is reported before someone is seriously injured, or
even dead because of seizure activity or other physical debilities.
we are going back to our tried and TRUE supplementation!(minus the E
for a while)…i hope she bounces back quickly!
many thanks,
kris
Question about SPEAK/Fish oils
Posted by: “kristinakate1213”
Mon Oct 13, 2008 8:39 am (PDT)
my katie was taking 2 ProEFA, and 1ProEFA twice a day with 1 high gamma E.
started SPEAK and saw her revert to an infantile state verbally she
just grunted, and physically, she had increased balance problems
(noted by her teacher and PT). Her motor planning became non-existent.
it has now been several weeks since i discontinued SPEAK, and just
stopped everything to clear her system.
started back on our old protocol and it is slow going to get her back
to where she was. does anyone have any of these issues? i know Tanner
had his speech regress, but did anyone else notice changes in the
areas of motor planning and hypotonia along with the speech regression?
katie is coming around VERY slowly…this kid would get out of bed
every nite to come to be with mommy and daddy, but now it seems she
“forgot” how to get out of bed and just cries for one of us to come
get her…same goes for turning lights on and off….i ask her to do
it, and she shakes her head NO…she just can’t “remember” how to do
it. she is also experiencing problems coordinating herself into a
chair and climbing into bed.
any help, suggestions, or support greatly appreciated!
( i beat myself up daily for changing something that has done wonders
for her and will never forgive myself for seeing her struggle through
this regression just because i wanted a quick fix)
kris
Re: Question about SPEAK/Fish oils
Posted by:
Tue Oct 14, 2008 7:35 am (PDT)
thanks for your support….as i thought about this yesterday, i
decided to just suspend all the fish oils for the time being. YES,
there will be no more vitamin E…EVER. i figure i will give her a month
or two off of all supplements, since there is E in the fish oils and i
want to really purge her system from all the E.
she is still unsteady on her feet, and her gross motor skills are
still out of whack. that is the hard part, her ability to maneuver has
declined and i haven’t seen any improvements, ironically her fine
motor skills remain intact and even a little better than before.
kate is beginning to get some of her word approximations back, so i am
happy about that. but she is still grunting a lot, and that had
disappeared altogether when she was just on the fish oils
katie has also been using the epsom salt baths on a regular basis even
before the SPEAK. one other point/complaint i wanted to make about the
SPEAK, was a rash that broke out around her mouth. upon researching
this, it was noted that high doses of E and/or fish oils can cause an
eczema-like rash in a small percentage of people using these
supplements. the rash is still there, but like you said, since this is
a fat soluable nutrient, it may be sometime before it clears up.
thanks for you help…did tanner suffer any gross motor skill
regressions in
the wake of the SPEAK supplement?
everyone here is in my prayers that our kiddies get back to their old
selves and even excel beyond.
thank you for your help and support!
NEGATIVE
Re: Update on Tanner -and note about vitamin E
Posted by: “Kimberly”
Fri Oct 3, 2008 3:54 am (PDT)
Oh my goodness…Lisa, that is terrible! I’m so sorry that this is
happening to you and Tanner. I can’t imagine what you both are going
through, though this now has me worried about my own son. I started
him on SPEAK as well, but have only been doing 2 caps at a time off
and on for a couple of weeks. All total, I have only given him 14
caps…so 7 days worth spread over the past 2 weeks. Well, starting
on this past Sunday, I gave him the speak supplement, and then again
Monday and Tuesday. Well, Monday his school nurse called and said he
felt warm and that his teacher said he was clingy all day and “off”.
So I picked him up early from school and didn’t think anything of it
because he gets sick easily and he seemed fine when he got home. Then
Tuesday he seemed ok, but his speech therapist noticed that he was
having more difficulty. I also noticed more groping and
unintelligable jargon, but again didn’t think much about it because
he is always so variable. Then, Tuesday afternoon and evening he was
having some major gastro distress. I woke at 5AM Wednesday morning to
the sound of him wimpering and he was running a fever of 101.2. I
gave him motrin and soothed him back to sleep, kept him home from
school, and he seemed ok, but off…extra giggly and zoned out and
lots of unintelligible speech and random verbal and oral
stimming…at this point I figured it must be a virus or something.
But I didn’t give him the speak Wednesday night or tonight (thank
God) because when he is sick I usually stop supplements for some
reason. Then I get an email tonight from Nourish Life about possible
negative reactions and it all dawned on me, and then I saw your post
about Tanner. I want to burn the package! I too am so leary of
supplements and things but for some reason I ignored my inner voice
and tried this out anyway. My gut tried to tell me that it wasn’t a
good idea to try something new that hasn’t been tested for safety,
but I kept thinking it had to be ok because it was supposed to be the
exact same thing we were taking already, but in a more convenient
form. We weren’t on K before so I have no history with that to
compare to, but I had been doing the NN EPA, EFA and Vitamin Shoppe
High Gamma E.
I have magnesium sulfate cream and glutathione lotion that I use on
my son daily for Autism that our DAN! prescribed so I will continue
with that and try to give him a sea salt bath tomorrow evening.
Hopefully that plus time will make him better. Please keep us
posted…I can’t imagine your pain as you prepare to talk to the
school tomorrow for Tanner. Oh my heart is breaking for you. My son
is only 5 and has Autism as well as the verbal apraxia and global
dyspraxia…he really doesn’t seem to be aware of (or care about) his
differences from his peers…sometimes that can be a blessing
unfortunately.
I prayed that God will put His hands on Tanner to clear the pathways
from his brain to his mouth and untangle his speech…it will be,
have Faith.
Warmly,
Kimberly, Mom to Ricky (5 yrs old, Hirschsprung’s Disease, Autism,
Apraxia/Dyspraxia, SID, ADHD secondary to Autism…and others) and
Lawson (3 yrs old, loving brother and in-home therapist(lol) to
Ricky, and a handful on his own)
Re: Question about SPEAK/Fish oils
Posted by: “Kimberly”
Tue Oct 14, 2008 3:03 am (PDT)
Kris,
I just want to let you know that you are not alone. My son also
regressed after being on SPEAK for just a few days. I stopped the
Speak almost 2 weeks ago now and he is still not back to where he
was. His speech is terrible now and he has reverted back to lots of
unintelligable jargon, very poor articulation, and overall poor motor
planning. He was saying perfectly “pick me up” and now it sounds
like “pikiuh”. I am so heartbroken to witness such a HUGE regression
in him. I’m used to small regressions, but this one is much more
noticable. He is also stimming like crazy, eye contact is worse than
ever, and it is very hard to get and maintain his attention. I’m
devestated that I may have done this to him by giving him a
supplement that I thought was going to help him and that I thought
was just like what he had already been taking. I don’t have any good
advice, because my child is suffering too, but I like you am trying
to get him back to all his original supplements and taking things
slow. He has autism too, so he is on quite a long list of
supplements. Best wishes and prayers that all our kids get back to
their previous levels soon!
Kimberly
Re: Update on Tanner -and note about vitamin E
Posted by: “Kimberly
Fri Oct 3, 2008 9:19 am (PDT)
Just to clear things up a bit about my own post previously.I don’t know
whether it was coincidence or the SPEAK that caused the problems my
son had
this past week (fever, gastro distress, regression). But, just to be
on the
safe side.I’m going to hang onto the SPEAK for now and just switch back to
the NN and vit E we were using before. As time passes, I’m sure more info
will surface.at which time I will decide whether to try it again. I don’t
want to propagate panic, but I also don’t want to risk my child’s
health and
progress to date either. My only advice is to go with your gut to decide
whether to try or not or continue or discontinue.
Kimberly
NEGATIVE
another possible speak effect
Posted by: “Joy
Fri Oct 3, 2008 8:41 pm (PDT)
Hi everyone,
I had Shyann’s doctor approve 2 speak caps a day, but no more.
Tonight Shy complained of her upper palate burning and told me it’d
been happening everytime she takes speak, but tonight it just kept on
burning. Then she said her head hurt, specifically the left side
in “whooshing” sensations. Her thoughts were that her brain was trying
to open up. My thoughts are that I am stopping speak. My child NEVER
gets headachs. Just thought I’d share that. Let me know if any of you
have heard your child complain of burning.
Joy
Re: another possible speak effect
Posted by: “Joy
Sat Oct 4, 2008 5:48 am (PDT)
Today Shyann had a poor speech day. In the store I mentioned it to her
lightly after she had to repeat herself three times. Later she
complained about the burning and headach. Just now when I tucked her
in, The Lords Prayer came out mangled and garbled. I know God
understood her, but I couldn’t. All I can think of is Tanner and
imagining what Lisa must have gone through. And now I don’t want to
think about it anymore and just take some time off to spend with my
daughter. You can’t imagine the saddness inside. And I did this to her.
Joy
NEGATIVE
Re: Speak
Posted by: “srmccann2003” srmccann2003
Thu Oct 16, 2008 8:31 pm (PDT)
Dear Gretchen,
I am a moderator for this group and part of the SPEAK focus group.
Albeit a quiet moderator and due to computer issues not an overly
active member but I want to make it absolutely clear that I posted on
the response page of SPEAK that my son had NEGATIVE reactions to
SPEAK and NO ONE contacted me. How is that, <snip> “investigated
EVERY person about whom we’ve heard an usual or negative
experience.”? My son had negative behavior responses AND racing
heart when we went above two capsules a day. That to me is
negative. *NOTE* I just visited my response page on PharmaOmega. My
second responses were missing. I wrote them and then saved them well
over a week ago. I received the ‘saved successfully’ notice and re-
read what I wrote. Now today that post is missing? Maybe that’s why
you are not receiving negative responses, because they are saved and
then some how disappear? I posted again almost exactly what I wrote
before. I’m sure computer issues occur but I sincerely hope my posts
will not disappear again.
I also will be posting on the next SPEAK response page that today my
son’s SLP told me he has REGRESSED and LOST GROUND. I had been aware
of him apparently losing all his past tense words. I even thought to
post here and ask if it is age appropriate but instead I asked his
SLP. NO, it’s that he has LOST GROUND. We have to go back and have
him practice repeating the present tense in a sentence and then the
past tense in a sentence. This is something he finished over eight
months ago! Am I devastated to think that possibly something I gave
my son is causing him to regress? Or that I stopped giving him
something that was helping him? I can’t even BEGIN to tell you the
depth of that emotion.
Is all of this unequivocally caused by taking one capsule of SPEAK
per day? Is it a normal bump in the road? A regression before a
surge? I don’t know but at this time I don’t feel comfortable
risking it, especially given the growing number of regressions I’m
reading about.
I would dearly like to hear from Claudia on this. Has she posted at
all? What is happening with the people who were giving Pro-EFA with
high Gamma E? What’s happening with Claudia’s son? Is he taking
SPEAK?
Bottom line, At this time I will not continue with SPEAK unless
someone I trust with my son’s future convinces me differently.
I’d also like to say that I have known Lisa since sometime in 2003. I
have seen her repeatedly approve messages that were against her
beliefs or simply things she didn’t agree with. I’ve seen her even
approve a few that were personal attacks against her because she
didn’t believe as they did. Lisa is without a doubt out-spoken,
emotional, passionate and firm in her beliefs but given the past
history I find it very, very difficult to believe that she deleted any
of your posts.
Lastly I would like you to explain your post on another group in
regard to a a person who posted that they had read scary posts on
childrensapraxianet. To quote you, “There have been some ‘scary’
posts on another site. That’s a good word to use. We have talked with
the families and are relieved ourselves. What we were hearing 3rd
party (from the group list) and what really happened were
different.” Personally I’d like to hear what REALLY happened.
Sincerely,
Sarah McCann
Neutral comments on SPEAK supplements
This is a compilation of comments posted on the group list. It is not
comprehensive, if you think your comment was overlooked, please
contact me directly and I will search for your posting and include it.
Some parents have several postings and they are included under one group.
Lori
NEUTRAL
SPEAK
Posted by: “tommysmommy67”
Sun Sep 28, 2008 4:48 am (PDT)
Hi all. Haven’t been here in a long while. Received the new SPEAK
supplement this week and got started on Monday. I have him up to two
capsules, 2 x per day already. He seems to take it just fine. I’m not
thrilled with poking capsules. It does seem to squirt in directions
other than the spoon at times and get on my fingers. I do think it
smells fishy, but my son is taking it without complaints so I won’t
complain either. Wish it was available in a bottled form so it would
be easier to dispense. Has anyone seen any results yet? Anyone know
how long to give it before we should expect/hope for results? My son
is autistic, apraxic–totally nonverbal and six years old. I’m hoping
for a miracle. I hate getting my hopes up, but what else is there
besides hope?
Melissa
(where are “many families”) Improving on Speak
Posted by: “tommysmommy67”
Sat Oct 4, 2008 8:17 am (PDT)
I, too, would love to hear from other families who are seeing a
neutral or positive response from SPEAK. There is one other post on
the speechnutrients.com/forum page where a mom is reportng great
results. I wouldn’t say our results have been anything to shout out
about so far, but I haven’t seen any of the negatives reported by
families here. I do feel nervous based on all the negative posts,
but I continue cuz I have a hunch my son needs this stuff.
That said, last winter I read ALL of Dr. Morris posts, printed them
out, read and reread and reread, researched omegas, E, K, deficiency
symptoms, etc. Talked to other parents. Looked back thru all my son’s
testing (and noticed the fact that it showed him to be VERY low in E
AND omegas on an ION profile), and came to the conclusion that my son
fit this mold. So I tried the formula on my own. I had him on the
Nordic Naturals EPA and DHA, three times per day, plus the K capsule,
plus the high E alpha and gamma. I saw no adverse reactions at that
time either. But, I did not get speech from my son. What I did get
was more noises, jargoning I guess you’d call that. (I remember
someone who was working with him saying they had never heard him be
so vocal.) At the time, I was looking for WORDS so I didn’t
attribute all the new noises to the supplements. Once we ran out of
all the supplements, I didn’t reorder. So really, I’m still not
positive that they were affecting him. Over the summer, he didn’t
lose ALL of these sounds but I didn’t hear them nearly as often.
I’m starting to hear lots of these noises again and more often and in
long strings of sounds. I’m hopeful.
I feel terrible and sad for all those parents here reporting
intolerable side effects from this product. We have experienced that
here with other supplements. My thoughts are this: autism (in our
case) is not a one size fits all disease. Our affected kids are all
so different, yet similar. For example, many kids with autism have
amazing gains on mb12 shots. My son, 18 months of nothing a few years
ago, and then over this summer we tried again and he went crazy. I
was in tears almost daily as he was a total wreck. Even his summer
camp program staff couldn’t handle him and he was hurting himself.
Thank God he’s over that and I’ll never EVER give him mb12 again.
Another example, many parents say WOW the multivitamin called Super
Nu Thera from Kirkman Labs made an amazing difference in their
child. For mine, again nothing. For others I’ve heard from, their
children went nuts and they had to stop. Some surge on glutathione,
others nothing. I could go on and on. The point is: SPEAK may be the
same. I know alot of the kids here are apraxic and not also autistic.
That alone is a big difference between my guys and other kids
represented here.
Also keep in mind that the RDA for vitamins, minerals, et al. is for
the general population. My son is NOT one of the general population.
We have been seeing DAN doctors for years and have had him on as many
as 30 different things per day. To many, this would be considered
megadosing and yes, it was well above and beyond any RDAs. A
Flintstone chewable or Jr. omega capsule doesn’t even scratch the
surface of what my son was shown to be deficient in (again, thru
testing.)
So, I’m going to continue with SPEAK for my son, for now. For
others, I would heed the many posts that have been written here in
the last few days about how you need to do your research, consult
your practitioners, and make an educated decision that’s not solely
based on “what everybody else is doing.”
Melissa
NEUTRAL
Re: Question about SPEAK/Fish oils
Posted by: “Brandi
Tue Oct 14, 2008 9:39 am (PDT)
I am a very concerned mother of an 8 yr old global dyspraxic boy that
is in the Speak Focus group. He has never been a BIG responder to
fish oils. But it never caused any harm either. I am very concerned
about him being on this supplement! I do not want to cause any
further damage but he has been on it about 3 weeks and it really
hasn’t done or changed to much. I am really in limbo as to what to
do. leave him on it or go back to the ProEfa, any opinion is greatly
appreciated!!!!
Thanks
Brandi
Rock Valley, IA
Positive experiences with Speak supplements
This is a compilation of comments posted on the group list. It is not
comprehensive, if you think your comment was overlooked, please
contact me directly and I will search for your posting and include it.
Some parents have several postings and they are included under one group.
Lori
POSITIVE –Told by doctor to stop giving SPEAK supplements
Sun Sep 21, 2008 6:18 pm
Day 7 of SPEAK (Speech gains, no blleding issues)
Debjward
Today is my son’s 7th day of SPEAK. Except for Day 1 when we got the
supplement in the mail and only got 2 doses (one in the afternoon and
one at night) my son has had 3 doses a day of 2 capsules each dose or
6 total per day. He is 5 years 3 mos and 37lbs.
On day 5 on our nightly 2.3 mile dog walk I heard my son talking with
his dad and he consistently said the “y” sound. He clearly
said “Yeah” and “Yard”. If you have been reading in the last month
you may have read where I said we were working on the “y” sound. I
believe that in conjunction with speech therapy the SPEAK has helped
my son. I can ask him if something is “yucky” or “yummy” and he can
say it clearly not like before when he said “wucky” or “Wummy.”
This time he has had no weird emotional issues and he’s on 3x the
Vitamin E I gave him before! Also no loose stools. Perhaps in the
past his bowel movements and the fish oils were just a coincidence?
He still hardly eats yet he is eating more these days? An extra
benefit of the SPEAK?
I keep 4×6 index cards. On the upper right hand side I write “Day 1”
(or whatever day it is) and on the upper left I write the day of the
week. Below I make 4 horizontal columns with the date, time, and how
many capsules given, and if he swallowed the chewed capsule or not.
On the remainder of the card I write observations. Perhaps this set-
up will work for you for record keeping?
Posted by: “debjward”
Sun Sep 28, 2008 4:58 pm (PDT)
My 5yr 3mos ds is on day 14 of taking 6 SPEAK a day (2 SPEAK 3 times a
day). He has had no diarhhea from the fish oils and no weird emotional
outbursts from the Vitamin E. Apparently high Alpha to Gamma works for
him.
On day 5 he could make the “y” sound. We’ve been working on that in
speech therapy for 6 mos. It’s not a fluke since he says “yeah” daily.
(I keep notes.)
Today my son said “jerzey” for “jersey”. He can’t make the “s” sound
so approximating a “z” sound is terrific!
Day 29 of SPEAK
Posted by: “debjward”
Mon Oct 13, 2008 5:25 pm (PDT)
My 5 yrs 4 mos ds was understood by neighbors we hardly ever see!!
My neighbors Bonnie and Charles (they live a couple of streets away)
were walking home from dinner and we were getting ready to leave to
walk our dogs. Bonnie was holding a water bottle. My son asked
her “What’s in your bottle?” She answers “Water.” My son asks “Why
you drinking water?” She answered “Because I’m thirsty!”
Wow!!
My son is hardly ever understood by anyone besides his siblings and
his speech therapist.
Wow!!
I give him 3 SPEAK a day because I cannot tell the difference between
3 and 6 SPEAK a day. I give him 1 SPEAK three times a day. (I gave
him 6 SPEAK a day for about 2 weeks and I have given him 3 SPEAK a
day for about 2 weeks.)
So far no weird reactions, diarhhea, mood swings, loss of speech,
coordination issues, etc. He has gained the “Y” sound and also
the “CH” which we weren’t working on!
His pediatrician feels he shouldn’t be on it long term but if SPEAK
helps train his brain to make sounds speech therapy and fish oils
alone couldn’t do then clearly my son is benefitting from it!
Sincerely,
Debra, homeschooling mom of 4 in Central Florida
Stopping SPEAK after 29 days
Posted by: “debjward”
Mon Oct 20, 2008 6:39 am (PDT)
(My computer crashed last Thursday night!)
My 5 yr 4 mo ds took SPEAK for 29 days. He took 6 a day for about
half the time and 3 a day for the remainder of that time period. I
gave him his daily dose divided into three times a day so he got 1 or
2 capsules of SPEAK three times a day. He chewed the capsules until
they were flat and spit them out.
My son never had any side effects but what prompted me to stop the
SPEAK was that his pediatrician said as long as he didn’t have any
side effects that after I gave him the 40 day supply I had (I bought
my own single box before being invited into the focus group) that I
was to not give him anymore for a YEAR. I think at the office I
thought I heard her say “for the rest of the year” but when I went
back to see her to get a script for new blood draws she said not “the
rest of the year” but for a “calendar year”. She said the Vitamin E
stores up in your fatty tissue and organs and she feels if he is not
malabsorbing that he will have built up enough to do him good and tat
if I continued giving him more that he might get too much since we
don’t know for my son how much is “too much.”
I was reading over my son’s medical records and his second metabolic
geneticist said he may have a “new onset autosomal dominant
disorder.” My son is not your son; all our children are different so
we cannot compare my child’s results to typical children. I can’t
even compare him to my other three children since he is clearly very
different from even them within the same family.
I wanted to try this supplement because my son is such a challenge
and no one can diagnose him. The best I’ve got is that he has
Apraxia, Dysarthria, and Hypotonia in his tongue. This weekend he
climbed a Cedar tree in the backyard which has very low branches and
he scratched himself on his abdomen. He calmly came to me and showed
it to me. Not really any blood but raised skin for about 3 inches.
Again not a reaction like my other children but in the past he
wouldn’t have even noticed it. I wonder if the Vitamin E helped him
feel pain? Coincidence?
I have sent an email to [email protected] requesting more
information on Vitamin E. I can’t find anything on building up
stores of Vitamin E. How much you should take if you are low-normal
in it. Again my son wasn’t harmed but maybe stopping it was a good
thing. My son’s pedaitrician’s words cause me concern. I’ll post
about the results of the blood test my son took when I get them.
I hope all the children who experienced negative side effects
recover. I wish their parents wisdom and patience and peace during
this time.
Sincerely,
Debra, homeschooling mom of 4 in Central FL
POSITIVE – Decided to stop giving SPEAK supplements
Re: Speak supplements
Posted by: “pdearmin”
Thu Sep 25, 2008 7:40 pm (PDT)
Hi Carol-
My son was on NN omega 3-6-9, one pill once a day before we switched
to SPEAK. He is on day 4 of SPEAK. The first day he said “oopsie”–
NO idea where that came from!
On day 3, he said his sister’s name: Elsa. Elsa is a twin. Her name
has been lost to him for almost a year. Do you have any idea what it
must have felt like to have her brother call her by her twin
sister’s name because he couldn’t say her name? He would call Ab–by
even though he meant Elsa. I ran to her and gave her the biggest hug
when I heard him say her name. I was smiling through tears! She just
hugged me back and said “I love you so much mommy”.
I know this is from SPEAK, as he was actually hearing her name less
since she is gone at school all day now. We are working on t sounds
in therapy so that can’t be it. I can’t wait to see what happens
when I start adding pills next week!
Penny
Re: Speak supplement ?
Posted by: “pdearmin”
Wed Oct 1, 2008 6:42 am (PDT)
Hi-
Since we’re all weighing in, I wanted to tell you our experience with
SPEAK. My son is 2 and we started on one SPEAK once a day for a
week, then upped it to 2 SPEAK once a day. We have not had any side
effects than would be expected if you took the supplements in
isolation. Without a clinical trial, where the subjects are matched
according to diagnosis/characteristics and randomized into two groups
where one gets SPEAK and one only thinks they are getting SPEAK, we
will never truly know what side effects are from SPEAK and what are
from normal (or in this case the abnormal evolution of apraxia)
development.
Prior to starting ANY supplements it seems that all my son did was
regress. We’d gain a sound, we’d learn words and the next day they’d
be gone. Sometimes for months. Even after starting NN O3-6-9, and
seeing great gains, all of a sudden Brady start adding dipthongs in
the middle of the words. We started SPEAK and the dipthongs abated,
but now he is adding -a and -o at the end of words. Some
developmental specialists and SLPs think these are good signs as he
is playing with sounds. He is also only occassionally taking a nap.
Is he losing naps b/c of SPEAK, or because he is almost 2 1/2? Is he
emotional and frustrated because of SPEAK, or because of being tired
from losing naps? Did the children on here with reported seizures
have them spontaneously due to an unrelated fever, a predisposition,
or was it in fact exacerbated and/or caused by SPEAK? As a scientist
you would have to study the data, as a mom you have to go with yor
gut.
What I have noticed more than the phenomenal gains we saw when first
starting oils is an increase in attention and motivation to perfect
sounds that he is struggling with. He has new words yes, but nothing
super dramatic. All gains are great, but to me it is taking more
time and the results are at a “deeper” level than before. This might
be just as important as learning words. Articulation and language
usage are what are going to get him understood by the outside world.
For the first time, I understand why it can be valuable and important
to add ingredients one at a time, and play with dosages and wait for
plateaus. You can see what works for your individual child, and what
part is not working. You can try that ingredient again at a later
time when your child is in a different stage of development and try
to tease out whether it was the oils or a phase. If you already know
what works, having one pill with all the ingredients sounds appealing!
We have to keep sharing our observations. You have to go with your
gut. If you already had something that was working for you, stick
with it if you don’t want to try something that might make it a
little easier, but not necessarily produce the same results. For
some of us, we don’t know what formula works for our children and
this seemed like a good way to go. In retrospect, the Vitamin E side
effects and dosage information is something that either should have
been explained in more detail, or as a consumer I should have studied
in greater detail. I did not. If I am reading posts correctly (and
pls correct me if not) there is a risk if you use ibuprofen,
antibiotics, and as with all oils you need to stop prior to surgery.
My son is 2, and he will need to be on antibiotics, and yes I do use
ibuprofen for fever if it is affecting his ability to sleep as that
is just as important in healing the body. As of this very moment I
am on the fence about what to do.
There seems to be a group of children who have a diagnosed deficiency
of certain vitamins. We have not yet had these tests. I think the
best course of action would be to have your child evaluated for these
deficiencies so that you can supplement appropriately only in those
areas where the benefit outweighs the risks. Your child would be
under a Drs care and they could make appropriate dosage
recommendations as this does not appear to be as clear cut as at
least I thought.
Best of luck and I hope that no matter what everyone decides, you
find something that helps your child get to the next level!
Penny
Re: Speak supplement ?
Posted by: “pdearmin”
Thu Oct 2, 2008 8:42 pm (PDT)
I just wanted to post an update about our son. We decided to take him
off the speak. I did not have the EPA, just the EFA he was on before
so I gave 2 of those today. He had new words still..gave me a used
napkin and said clear as day “trash can”. But, he did have diarrhea.
Now I do intend on getting the EPA tomorrow and adding this, but what
to say about the “malabsorption” that I’ve heard about.
We did not have regression caused by speak, or side effects. But I am
still concerned, as I wrote in my e-mail to the company, that there
were contraindications with other medications, namely motrin, that we
should have been informed about.
But, we still find ourselves in the same place we were before speak,
on our own trying to figure out the dosage, possible vitamin
deficiencies, all until we can somehow find a qualified medical
professional willing to diagnose and treat our children with
alternative methods.
POSITIVE
Re: Speak supplements
Posted by: “Christine”
Thu Sep 25, 2008 4:05 am (PDT)
I am part of the focus group, and my son has been on Speak for 3 days.
While he has been saying more every day, yesterday he had his first
full sentence. He knew that Grandma was looking to get him Thomas
trains for Christmas (thinking far ahead…), and he held up a Thomas
train in the store and said “I want this grandma for Christmas”. It
wasn’t clear (nothing he says is), but he’s never said that much in one
shot. I got it on phone video and played it for darn near everyone.
Okay, so I don’t know if that’s the fish oil or just development, but
is it really a coincidence that his first full sentence came right
after the oil?
Re: Speak supplements
Posted by: “Christine”
Thu Oct 2, 2008 5:12 am (PDT) I have another good Speak story. My son
Nick (2 yrs/ 8 mos) was not
previously on Fish Oil, so I see nothing but improvement on these
capsules. 2 days after he started taking them, he said “I want this
grandma for christmas” (Well more like, Iwa dee gama keema). In the
past few days, I was told that it “rain popcorn” (Netflix
commercial), “no I want to pee downstairs” (not even going to type
out the way that sounded!), and “Mommy I want to open this”. I’m sure
it’s the Speak, because he has been in speech for months now and
these word surges only started after the pills did.
His articulation has not improved, it is better for single words/
sounds than stringing together a phrase or sentence. But to hear 5
word sentences for the first time ever makes me want to cry with joy.
I’m finally getting to experience truly understanding what my son
sees every day, what other mothers around me take for granted. I know
my friends and family are sick of me telling them every new phrase
he’s come up with.
Honestly, even after this I’m still nervous. I’m constantly watching
him for signs of seizures or vitamin overdosage. I feel like I’m
tempting fate, but so far the signs have all been good. I know this
isn’t the right med. for everyone out there, but so far, it’s worked
for me.
POSITIVE
On Thu, 10/2/08, Kathryn wrote:
From: Kathryn
Subject: [childrensapraxianet] Re: SPEAK
Date: Thursday, October 2, 2008, 2:13 PM
I also agree with Liz and Katie. I find it odd that we are not
asking the MDs and specialists involved with our children more about
these issues. I looked on the ProEFA bottle this morning and it
said adult dosage = 2 capusles. We are talking about giving our
children 4 capsules. Is there any long term studies because I would
like to know more about the omegas as well.
My son Skylar has hypotonia, sensory issues, gut issues, carnitine
deficiency, global dyspraxia, and who knows what else!!! We are
working with UCSF (great research facility) for his metabolic
issues. He is seeing a metabolic geneticist, pediatric neurologist,
genetic counselor and also a nutritionist seperately. I have
submitted the Speak info. to all above to help me understand. I
have been giving Skylar 2-3 caps a day for the last 10 days and seen
wonderful results! Where Skylar wasn’t able to communicate because
he can’t talk (peek-a boos is about it) and his limb dyspraxia (plus
numbness in hands) make it hard for sign language. He would use his
eyes to look at something he wanted. Speak has helped him so much
in just one week Sky can sign more point to what he wants and he is
using some language. Truthfully if told I had to take him off of
this supplement, I think I would cry! We are in the VFG and
hopefully it will continue. I am sorry for those it had a reverse
effect on.
Ending this note, I have been told by experts that a carnitine
deficiency is usually the result of a malabsorption issue (secondary
deficiency). Noting the number of kids on this sight with carnitine
deficiencies, I’m begining to think fat malabsorption is fairly
common in our kids.
POSITIVE
Re: Speak supplement ?
Posted by: “quilla8892”
Sat Oct 4, 2008 8:03 pm (PDT)
I do believe that the Speak works… I know it’s pricey.. but I see a
drastic changed in my childs verbal attempts… she will actually try to
say words now … and she can usually get the letters of the word…
Some days she would be quiet all day long… or just hummmmmm…. but
now it’s a string of things she’s telling me .. I just don’t understand
them yet.
POSITIVE
Re: New Member and Postive SPEAK feedback
Posted by: “cherylmckindra”
Mon Oct 6, 2008 4:39 pm (PDT)
To all –
I just signed on here bc I heard you all were having lots of dialogue
regarding SPEAK. I honestly don’t remember through which group I heard
about the focus group, but I signed up for the study and we started the
supplement roughly 2 1/2 weeks ago and are taking 2 capsules 2x a day.
I have been giving positive reports to the company but I haven’t
reported them on any board. I have tried many protocols with my son.
Most of them haven’t made a difference. Some, like chelation and
digestive enyzmes, made him regress badly. For us SPEAK seems to have
taken us a step forward in a very short amount of time. Of course it’s
only been a short time and I’m watching him very closely, but this is
the first thing I’ve tried in a very long time that I am noticing that
sosomething tangible is happening.
I’m so sorry to hear that it has caused problems for some of you out
there. I know firsthand how devastating regressions are. I’m writing
this mainly to let you know that it is possible the company is hearing
positives from many parents, because I have been one of them.
Cheryl
POSITIVE
Re: SPEAK reactions
Posted by:
Tue Sep 30, 2008 10:22 am (PDT)
My 2.8 year old son is at the end of week 2 on SPEAK. I started him
at 4 capsules the first week and bumped it up to 6 the second week.
The first week he wasn’t moody at all and he seemed to have new
climbing skills and gross motor abilities. He started climbing over
the back of the couch. I set him on the kitchen counter and he
typically stays put until I get him down, but he turned around and
using his arm strength he lowered himself to the floor with me
watching in amazement. He refused to sit in his booster chair for
meals because he mastered climbing in and out of it himself that
week. He took my chair at the head of the table and won’t sit
anywhere else. He also managed on day 4 to climb out of his crib.
The first week he was waking up a lot in the middle of the night
thinking it was time to play. The doses I gave him were with
breakfast and lunch. When I added the 3rd dose with dinner the
second week he immediately went back to sleeping through the night.
We were very happy with that impact. He had always been a good
sleeper before.
With the third dose we went through the extreme sensory issues and
acting weird for about 3-4 days and then he snapped out of it and
went back to his normal happy self. I remembered what people had
posted about anytime you increase a doseage, for a week or two period
you have to survive with crying and moodiness and it got me through.
I’m just glad it only lasted 3-4 days. Don’t think I could have
handled 2 weeks!
He is grunting more, but not making babble yet. My son has no words,
so any attempt at sound is a good thing. He’s also making a lot more
attempts at communicating by leading, handing me objects and cards.
We’re going to stick it out the 3 months at least and see if he is a
responder. If it brings about speach, I think it is going to take
him 1-2 months to show anything not 1-2 weeks. We had been on the
ProEFA and ProEPA since July at one dose of 2 EFA and 1 EPA and
didn’t get any instant new language abilities, so I was curious what
the higher dose of both with the added E would do.
We started OT this fall and are about to start PROMPT therapy– after
recasting and play therapy for the past year with no progress,
(except exceptional receptive language understanding). With the
right combination of therapy and vitamins hopefully he will talk
sooner than later!
Nicole (Mom to Remi 2.8 yrs motor planning problems, low tone &
apraxia)
Very informative article post. Fantastic.