Guest guest Posted June 8, 2009 Report Share Posted June 8, 2009 Hi , I just wanted to clarify that my email with questions for Debra didn´t include any questions about Speak! I was more interested in her approach (including other foods with some fat and antioxidants such as berries to help with absorption)which I think is really important too, and secondly why her switch to Speak even though she was seeing results with the EFA/EPA protocol. I guess I was curious as to why she switched if she was seeing results before? I have no intention of switching to speak or any other supplement that has such high levels of fat soluble vitamins! I have been reading and following this whole story since early 2008 so I was hear for the begining of the vitamin E debate, the speak trials and the nasty regressions. I spoke to my pediatrician before starting na on the EFA protocol and we have gone super super slow! I actually kick myself everytime I read the archives that one capsule of Nordic naturals proEFA is similar to what is in infants formula! Yikes! She is 4 now and we have just upped one more EFA and next we are adding the EPA so she is now at 2 doses (1 dose being 2EFA/1EPA) and have seen great results on all levels (sensory, receptive speech, attention/concetration, babbling, imitation, general motor planning (waving), balance, gross motor skills, no longer avoids foods with diff textures, sleep better...the list goes on and on)but not really on speech. We got more babbling, more attempts at imitating sounds but its not like she started blurting out words! But she had a lot things to work out...so we are pleased overall. My inquiry to Debra was more on the vitamin E front (I am still pouring over archives) and the other supplements that she gives. I understand your concern about SPEAK! - I agree whole heartedly with you - but I would like to think that most parents would do a lot of reading and research before popping pills into their kids! I take vitamins (quite a lot actually) and I am constantly reading up on things before taking them myself nevermind for my kids! Lets hope that there are more parents out there that realize their responsibility and not jump onto the " quick fix " bandwagon. I understand your reaction to SPEAK and the responsiblity you feel to other readers to warn them of the side effects. I commend this responsibilty. - Tania > > I don't know if some of you are missing this -but while there may be some children that do well on speak (probably due to the EFAs) -when a bunch of us tried it at once as you can see from the archives complied here by Lori- the overwhelming majority of us had HORRIBLE results -my son regressed dramatically and not just in speech -but in his school work. It took OVER FOUR MONTHS and talks to his school, friends to share why the child who was doing so well all of a sudden couldn't say the letter " B " And to me that's not as bad as the one child from this group Evoni who never had seizures prior to speak who last I heard is since being on it (seizures started in a few days in a number of the children as reported here) started having multiple seizures daily and has regressed to where she could no longer walk, or HOLD UTENSILS. > > I am TOTALLY DISGUSTED that this product continues to be marketed in the way it is. It should be in my opinion used in those unique rare situations overseen by a medical expert in using potentially toxic levels of fat soluble vitamins on preschool and school aged children. > > I know there are medications out there that save lives but could kill someone that doesn't need them -and to me speak perhaps fits into that category- and I pray that nobody dies from this but fear it can kill a child based on what I saw happen to my own son and to others here. To me however selling this product, recommending this product as a " try it " type supplement is irresponsible and dangerous. I have ZERO respect for any professional who continues to stand behind this product marketed to " late talekrs " or the garden variety " apraxic " knowing what we know today. > > > Below is a link to read positive, neutral and negative results from speak, an article from an expert on it -and below that info about EFAs which we have used in this group with tremendous and " miraculous " results and with no side effects (outside of things like temporary mild loose stools) If you want to try adding a bit of vitamin e I'd first read up on " hypervitaminosis e " and I'd also start with an alpha gamma 1/1 ratio in no more than a 200/200 dosage which many of us did use with success for around a year prior to the release of this product which took the best of what we know in this group -and then with the vitamin e- took theory from God knows who or where. But my child and none of our children are guinea pigs to prove or disprove someone's theory. Again in my opinion if what we saw here was a clinical trial -it would have been ended immediately and that (to me) dangerous product would not be on the market. > > Results from this group > /links/Pharma_Omega_Spea\ \ > k_reports_from_group_001224703760/ > > > From apraxia.org our Facebook page > http://www.facebook.com/group.php?gid=115029735601#/topic.php?uid=115029735601 & t\ opic=7363 > > > 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-ava\ ilable.htm > > Expert: 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 > > > ~~~~~~~~~~~~~~~~~~~~~archive > > > > Re: ? for > > Hildy I am hearing that more children today are being diagnosed with both autism > and apraxia. The Omega formula your doctor recommended I don't believe is the > correct formula. You want one that is higher in EPA than DHA (both Omega 3) > with a small amount of GLA (the Omega 6) I would NOT recommend starting vitamin > E unless you try the fish oils alone first as they are added to the fish oils > and we had a number of children including mine who regressed dramatically (or > had seizures etc.) on higher levels of vitamin E. Not to say that theory > doesn't hold merit -but there are to many unknowns for us as parents to > experiment with our children based on what appeared to be the higher level of > negative consequences. In fact " WHY?! " when the doctor who was even behind the > whole vitamin E thing had a child that responded remarkably to the ProEFA/ProEPA > mix prior to him ever being on any vitamin E (check the archives -they are all > there) > > Here's more on what happened to some on mega vitamin E etc. > /links/Pharma_Omega_Spea\ \ > k_reports_from_group_001224703760/ > > So as always stick with the basics to start. Below is a huge " new member " > archive which has much information on the fish oils as well: > > Below is a new member archive that keeps it simple on what to know to > start. > > > Re: Hi! New and wondering about apraxia. > > > Hi Mrs Laurie and welcome! > > Your son sounds like he has some oral apraxia which would of course > need to be confirmed by professionals. If oral apraxia is present > together with your child's delay he should at least be diagnosed > as " suspected apraxia " and appropriate therapy should be provided. > He is entitled by federal law to a free and appropriate public > education (FAPE) in the least restrictive environment (LRE) which > means that if 5 days of one on one speech therapy is appropriate for > him then that's what he should receive. What type of speech therapy > is he receiving from the school right now when you say " some " ? > > Below is a very long archive to help -please know that you don't have > to understand it all at once -we're here as a group to help! > > Thanks for sharing. This group has from the start been a group > that's made up of parents and professionals who care for children > with many types of speech and/or language delays and/or disorders. > There are parents here for example with undiagnosed " late talkers " > and we just have not heard from them in awhile. It's actually a > really good thing when there is a mix of us to share because we all > learn from each other as many diagnoses can overlap -or down the road > we learn that our child does have co diagnosis. > > While this group is open to parents of all children with > communication impairments -including hearing impaired, autistic etc. > it wasn't that all that posted recently had a child with autism, or > autism and apraxia -but because of society focus on autism -many here > started following an autism approach -including ABA in some cases! > That's understandable if the much more basic approach to apraxia -ST > and OT and EFAs were tried first and didn't work -but some were > trying that to start. > > The overwhelming majority (if you check the archives) have success > with the basic approach to apraxia. > > On the other hand- most of us are dealing with more than verbal > apraxia.we just don't know that when our child is 2 -and we learn > through professionals and observations as they continue to grow and > more and more is expected of them. This is also why it's important > to take your child for a neurodevelopmental medical exam when your > child is suspected of apraxia to confirm or rule out other diagnosis > such as sensory integration dysfunction etc. The earlier you know - > the sooner to start appropriate therapies to get them up to speed by > kindergarten. > > Don't let it overwhelm you -perhaps we aren't meant to know more > than what we have to know at each stage. We'll be here to help along > the way. It's OK to have any type of emotion when we find out our > child has more than a simple delay -or " more " than " just " verbal > apraxia. And it's OK to be completely overwhelmed and saddened to > find out your child has apraxia. And as I was one of those parents > it's never " just " apraxia when you find out!!! > > It's OK to be upset " just " because your child is a " late talker " too! > > Please know that I too believed Tanner to just have apraxia and have > my first message posted to a grouplist about that below.but down the > road found out he had a few other things we needed to help him > address. The incredible news is that the majority of our children if > you check history are up to speed to be mainstreamed by kindergarten- > and of course many have learned with communication impaired children > that it's best to start kindergarten at 6 vs. 5 to give them that one > extra year of therapy and developmental time. > > If you have questions after reading the following please share them. > This group has always been a wealth of information for all of us, no > matter how long we've been here. > > Below is a new member archived message to hopefully answer more of > your questions for now (did you read The Late Talker yet?) For updated > information on fish oils and vitamin E and more - please visit the > links section here > /links > > What type of apraxic like speech behaviors are you seeing that makes > you and the SLP suspect your child has apraxia vs. a simple delay in > speech? Is your child talking at all yet? At your child's age - > without speech, it's difficult to diagnose verbal apraxia -they > could " suspect " verbal apraxia and begin treatment just in case, > which wouldn't hurt your child if he ended up just having a simple > delay. Just a few questions before we could provide more accurate > answers: > > Does your child have signs of oral apraxia? (for example, can he on > command smile, imitate funny faces, blow bubbles...if you put peanut > butter anywhere around his mouth can he lick it off no matter where > it is?) > http://www.cherab.org/information/speechlanguage/oralapraxia.html > > Does your child have any neurological " soft signs " such as hypotonia > or sensory integration dysfunction? > http://www.cherab.org/information/speechlanguage/parentfriendlysoftsigns.html > > Who else evaluated your child? Was it only the SLP through your > town school or was he also in Early Intervention through the state? > (birth to three) Was he evaluated by both a speech pathologist as > well as an occupational therapist? Was/were they knowledgeable > about apraxia? (If your child wasn't diagnosed by an occupational > therapist as well and professionals suspect apraxia -I highly > recommend you request that too either through both the school as > well as private through insurance for many reasons) > > To answer any questions you may have about taking your child to see a > neurodevelopmental MD if he has not yet been to one and apraxia is > suspected... in one word - " Yes!!! " I would have your child diagnosed > (private) by a neurodevelopmental medical doctor (developmental > pediatrician or pediatric neurologist) who is knowledgeable about > apraxia and other neurologically based multi-faceted communication > impairments for numerous reasons. Reasons include (but not limited > to) > > *having a " hero " on the outside of the school who can assist in a > therapeutic plan and oversee your child's development over the years > *advocacy support with the insurance company > * ruling out or confirming any neurological soft signs or any other > reasons for the delay in speech > *help those that ask " why isn't he talking yet " understand this is a > medical condition -and has nothing to do with your child's cognitive > ability. (if in your child's case it doesn't. Apraxia in itself > does not affect a child's cognitive ability -and speaking early or > late is no indication of a child's intelligence. Also contrary to > popular belief -most who have speech impairments have average to > above average intelligence) > > Here's an article written by Neurodevelopmental Pediatrician Dr. > Marilyn Agin that was featured as a cover article in Contemporary > Pediatrics -a trade magazine for hundreds of thousands of pediatric > medical professionals across the US. (I wrote the parent guide) > > " The " late talker " -when silence isn't golden > Not all children with delayed speech are " little Einsteins " or garden > variety " late bloomers. " Some have a speech-language disorder that > will persist unless warning signs are recognized and intervention > comes early. Includes a Guide for Parents. " > > Podcast interview with Dr. Marilyn Agin from Contemporary Pediatrics > http://contemporarypediatrics.modernmedicine.com/radio_peds4 > > Actual article (where you can read it for free) > > http://opsc.mediwire.com/main/Default.aspx?P=Content & ArticleID=132720 > > There are also many activities parents can do at home with their > child to > promote the development of speech. These are detailed in the Guide > for Parents > http://www.contemporarypediatrics.com/contpeds/article/articleDetail.jsp?id=1363\ \ > \ > 15. > > This guide was written by Quote Link to comment Share on other sites More sharing options...
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