Guest guest Posted May 25, 2009 Report Share Posted May 25, 2009 I am a speech therapist with an 18 month old son. He currently has no diagnosis, and is only beginning " official " therapy (I have been working with him unofficially on increasing vocabulary both receptively and expressively). Currently he only has 2 consonant sounds: p,b and only one vowel sound: 'uh' His words consist of " muh " for " more, " " uh " for " up, " " muh " for " Moo " (cow) and " buh " for " baa " (sheep). He can only imitate inconsistently. For instance, I ask him to ask " moo " and he sometimes says " muh " sometimes " buh " sometimes " buhbuhbuh. " No other vowel or consonant sounds have come, however, he DID use the " d " and " n " for a short time a few months ago. He could say " dada " very clearly upon command, but that disappeared and has yet to come back. Some days (although VERY infrequently) he will come out with a string of " dididididninidi " but after that one episode it is gone, no matter how hard I try to get it back. I am guessing he will be diagnosed with verbal apraxia. He was a very " solemn " little boy, and people would make comments that he always looked sad or serious. He didn't walk until he was 15 months old, and still falls quite a bit. I am a speech therapist, but took this year off to stay home with my children, therefore I don't have a lot of access to tests. The speech therapist I am currently working with has the Kaufman, but I believe that test is only good for 2 year olds an older. So I am going to begin working with him using apraxia-based goals, but I am also going to start trying Speak...the Omega supplements that are similar to ProEFA. Has anyone tried this? Has anyone had any success? Has anyone had any situations where it did NOT work for them? Thank you for any information you can give. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2009 Report Share Posted May 26, 2009 Thank God you got to ask here first before trying -I wish someone told me; based on this group's results just about all of us that tried it feel that way. /links/Pharma_Omega_Spea\ k_reports_from_group_001224703760/ And also may want to read this: 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2009 Report Share Posted May 26, 2009 Oh my goodness. I had no idea. Absolutely no idea. Thank you more than words for this information!!! > > Thank God you got to ask here first before trying -I wish someone told me; based on this group's results just about all of us that tried it feel that way. > > /links/Pharma_Omega_Spea\ k_reports_from_group_001224703760/ > > And also may want to read this: > 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Hi , I have had my son (9 years old) on speak for about6 months. He seems to be a responder to this. He did great on the nordic naturals complete 3-6-9 and EPA, but when the focus group started on speak i thought i'd try him on it. He does as well on it as the other omegas, but my husband thinks he's doing better on speak. Quite a few of the people on this list had children who had serious side effects. Some of them included seizures and huge regressions. This might be because of the amount of vitamin e and k. I did go to my doctor who didn't have a clue so referred me to a dietician who specializes in stuff like this. She seemed to think it was ok, I do half the recommended dosage. I'm still a little concerned about the vitamin e, but he has done so well i'm almost afraid to stop. I figure that maybe he needed it more than most. personally, with a child so small as yours, i'd stick with the omega formula that has worked for most children here and maybe try the speak once he gets a little older sandy ________________________________ From: " melaniemursau@... " <melaniemursau@...> Sent: Monday, May 25, 2009 11:07:58 PM Subject: [ ] Has anyone tried Speak? I am a speech therapist with an 18 month old son. He currently has no diagnosis, and is only beginning " official " therapy (I have been working with him unofficially on increasing vocabulary both receptively and expressively) . Currently he only has 2 consonant sounds: p,b and only one vowel sound: 'uh' His words consist of " muh " for " more, " " uh " for " up, " " muh " for " Moo " (cow) and " buh " for " baa " (sheep). He can only imitate inconsistently. For instance, I ask him to ask " moo " and he sometimes says " muh " sometimes " buh " sometimes " buhbuhbuh. " No other vowel or consonant sounds have come, however, he DID use the " d " and " n " for a short time a few months ago. He could say " dada " very clearly upon command, but that disappeared and has yet to come back. Some days (although VERY infrequently) he will come out with a string of " dididididninidi " but after that one episode it is gone, no matter how hard I try to get it back. I am guessing he will be diagnosed with verbal apraxia. He was a very " solemn " little boy, and people would make comments that he always looked sad or serious. He didn't walk until he was 15 months old, and still falls quite a bit. I am a speech therapist, but took this year off to stay home with my children, therefore I don't have a lot of access to tests. The speech therapist I am currently working with has the Kaufman, but I believe that test is only good for 2 year olds an older. So I am going to begin working with him using apraxia-based goals, but I am also going to start trying Speak...the Omega supplements that are similar to ProEFA. Has anyone tried this? Has anyone had any success? Has anyone had any situations where it did NOT work for them? Thank you for any information you can give. __________________________________________________________________ Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new . Click on Options in Mail and switch to New Mail today or register for free at http://mail..ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Taking 5000% of the recommended daily allowance of an oil-based vitamin isn't something I would jump into. I have read the body can rid itself of extra water soluble vitamins, but extra oil based vitamins can be toxic (especially when lots of our kids have trouble breaking down oils in the first place?). Too risky for me. > > Hi , > > I have had my son (9 years old) on speak for about6 months. He seems to be a > responder to this. He did great on the nordic naturals complete 3-6-9 and EPA, > but when the focus group started on speak i thought i'd try him on it. He does as > well on it as the other omegas, but my husband thinks he's doing better on speak. > > Quite a few of the people on this list had children who had serious side effects. Some > of them included seizures and huge regressions. This might be because of the amount > of vitamin e and k. I did go to my doctor who didn't have a clue so referred me to > a dietician who specializes in stuff like this. She seemed to think it was ok, I do half > the recommended dosage. I'm still a little concerned about the vitamin e, but he has > done so well i'm almost afraid to stop. I figure that maybe he needed it more than > most. > > personally, with a child so small as yours, i'd stick with the omega formula that has > worked for most children here and maybe try the speak once he gets a little older > > sandy > > > > > ________________________________ > From: " melaniemursau@... " <melaniemursau@...> > > Sent: Monday, May 25, 2009 11:07:58 PM > Subject: [ ] Has anyone tried Speak? > > > > > > I am a speech therapist with an 18 month old son. He currently has no diagnosis, and is only beginning " official " therapy (I have been working with him unofficially on increasing vocabulary both receptively and expressively) . Currently he only has 2 consonant sounds: p,b and only one vowel sound: 'uh' His words consist of " muh " for " more, " " uh " for " up, " " muh " for " Moo " (cow) and " buh " for " baa " (sheep). He can only imitate inconsistently. For instance, I ask him to ask " moo " and he sometimes says " muh " sometimes " buh " sometimes " buhbuhbuh. " No other vowel or consonant sounds have come, however, he DID use the " d " and " n " for a short time a few months ago. He could say " dada " very clearly upon command, but that disappeared and has yet to come back. Some days (although VERY infrequently) he will come out with a string of " dididididninidi " but after that one episode it is gone, no matter how hard I try to get it back. > > I am guessing he will be diagnosed with verbal apraxia. He was a very " solemn " little boy, and people would make comments that he always looked sad or serious. He didn't walk until he was 15 months old, and still falls quite a bit. I am a speech therapist, but took this year off to stay home with my children, therefore I don't have a lot of access to tests. The speech therapist I am currently working with has the Kaufman, but I believe that test is only good for 2 year olds an older. > > So I am going to begin working with him using apraxia-based goals, but I am also going to start trying Speak...the Omega supplements that are similar to ProEFA. > > Has anyone tried this? Has anyone had any success? Has anyone had any situations where it did NOT work for them? > > Thank you for any information you can give. > > > > > > > > __________________________________________________________________ > Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new . Click on Options in Mail and switch to New Mail today or register for free at http://mail..ca > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2009 Report Share Posted May 28, 2009 My 3 1/2 you dtr. has been on SPEAK since it came out last fall and she's doing great! She had already been on the EFA/EPA anecdotal protocol for a year+ (2 doses/day) along with 400IU natural E/day (Trader Joes brand). She's made such fast progress all along but both my husband and I have seen her speech decline a few times when she was off the E/SPEAK. I took her off of it one week last summer just as a trial, to make sure I wasn't giving her something she didn't need And it was painful to watch her word finding, & verbal motor planning decline. She improved again once we resumed. But since starting SPEAK, she sensory issues have completely gone away. I only give her one SPEAK/day now (sometimes every other day)and one dose of fish oil (2Complete 3-6-9 + 1EPA). And I check her blood levels of E, K periodically to make sure her levels aren't going too high. And I always give the oils at the same time she gets her levo-carnitine (2ml)and multi-vitamin (we're using Kirkman's chewable multivitamin right now, with B vitamins) because the carnitine helps with absorption of the fats and B's. And the B's help with hypotonia. I also give a high quality CoQ10 for her hypotonia. There is a synergistic effect. ***And*** I think this is a really key point...I don't know why it's not mentioned more often. But I always make sure my dtr. is consuming another fat and an antioxidant at the same time as giving her the fish oil or SPEAK. So for example, she'll eat berries and cheese and then I give her the fish oil. The SPEAK package says to give it with another fat and don't mention the antioxidant because the E it contains is an antioxidant, but I like to give it with a swig of O.J. as well, just to be sure it's used properly in the body. If I'm not able to get the fat, oil, & carnitine in at the same time, we skip the fish oil all together. It seems more important to avoid oxidative stress. Maybe one E or SPEAK every day or every other day has been helping with the increased consumption that happens with prolonged fish oil use. My dtr. hasnt' needed a special diet. We did a 2 1/2 month GFCF trial with no effect. And so far it's worked! My dtr. started out with a severe speech delay and all the classic soft signs at age 2. Now she's mainstream in every way, doesn't qualify for SD therapy and we're taking a summer break from private speech. Not sure if we'll need it in the fall. For newcomers, I'd highly recommend running the apraxia labs to consider in the links/files section of this group. It's **important** to find out if your child has a carnitine deficiency, as well as the other common metabolic defieincies found in our kids. It's all very individual, depends on your child's metabolic profile. Good luck! Debra in CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2009 Report Share Posted May 28, 2009 Speechnutrients.com had a promo a while ago for 1 free box (I only paid $5.95 for shipping). I decided afterwards to stick with Nordic Naturals. He did VERY well speech-wise on the Speak, but was a little more sensory than he is on Nordic. If their deal isn't still going on, I could send you a box of mine - no need to buy it for $50 to find out whether it could work for you. Email me. > > I am a speech therapist with an 18 month old son. He currently has no diagnosis, and is only beginning " official " therapy (I have been working with him unofficially on increasing vocabulary both receptively and expressively). Currently he only has 2 consonant sounds: p,b and only one vowel sound: 'uh' His words consist of " muh " for " more, " " uh " for " up, " " muh " for " Moo " (cow) and " buh " for " baa " (sheep). He can only imitate inconsistently. For instance, I ask him to ask " moo " and he sometimes says " muh " sometimes " buh " sometimes " buhbuhbuh. " No other vowel or consonant sounds have come, however, he DID use the " d " and " n " for a short time a few months ago. He could say " dada " very clearly upon command, but that disappeared and has yet to come back. Some days (although VERY infrequently) he will come out with a string of " dididididninidi " but after that one episode it is gone, no matter how hard I try to get it back. > > I am guessing he will be diagnosed with verbal apraxia. He was a very " solemn " little boy, and people would make comments that he always looked sad or serious. He didn't walk until he was 15 months old, and still falls quite a bit. I am a speech therapist, but took this year off to stay home with my children, therefore I don't have a lot of access to tests. The speech therapist I am currently working with has the Kaufman, but I believe that test is only good for 2 year olds an older. > > So I am going to begin working with him using apraxia-based goals, but I am also going to start trying Speak...the Omega supplements that are similar to ProEFA. > > Has anyone tried this? Has anyone had any success? Has anyone had any situations where it did NOT work for them? > > Thank you for any information you can give. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2009 Report Share Posted June 5, 2009 Hi Debra I was intrigued by your post because I too have been wondering how to boost absorbtion of the fish oil and I am currently giving my daughter her fish oils with fruit (apple sauce combo, mixed with her multi vitamin which has a variety of ,we also give her kirkman B12 liquid followed by a creamy yogurt which I consider the extra fat she needs, (it has 2.9 grams of fat for an individual serving tub) sometimes I also give her half a slice of toast with a bit of cream cheese or butter if she is still hungry. Now would you consider that enough of the " other fat " to ensure good absorbtion? What Q10 brand do you use? Secondly, when you were still on EFA/EPA combo how much were you using ( 2 doses a day- does that mean 2EFA/1EPA per dose?)And did you always find that it was better given in 2 doses versus all at once? When did you add the E? That is one thing that I have currently not added, but I am beggining to become concerned about the lack of antioxidants if I don=B4t start giving my daughter E. Again, I am little lost in terms of which brand and quantity. Lastly, did you run blood tests before starting the carnitine? Has the addition of carnitine been significant? Sorry for all the questions, but we just upped my daughter to almost 2 doses of EFA/EPA ( we just need to add the last EPA now) and I am trying to consider my next step - being E and carnitine. Thanks! Tania (mom to na age 4) > > My 3 1/2 you dtr. has been on SPEAK since it came out last fall and she's doing great! She had already been on the EFA/EPA anecdotal protocol for a year+ (2 doses/day) along with 400IU natural E/day (Trader Joes brand). > > She's made such fast progress all along but both my husband and I have seen her speech decline a few times when she was off the E/SPEAK. I took her off of it one week last summer just as a trial, to make sure I wasn't giving her something she didn't need And it was painful to watch her word finding, & verbal motor planning decline. She improved again once we resumed. > > But since starting SPEAK, she sensory issues have completely gone away. I only give her one SPEAK/day now (sometimes every other day)and one dose of fish oil (2Complete 3-6-9 + 1EPA). And I check her blood levels of E, K periodically to make sure her levels aren't going too high. And I always give the oils at the same time she gets her levo-carnitine (2ml)and multi-vitamin (we're using Kirkman's chewable multivitamin right now, with B vitamins) because the carnitine helps with absorption of the fats and B's. And the B's help with hypotonia. I also give a high quality CoQ10 for her hypotonia. There is a synergistic effect. > > ***And*** I think this is a really key point...I don't know why it's not mentioned more often. But I always make sure my dtr. is consuming another fat and an antioxidant at the same time as giving her the fish oil or SPEAK. So for example, she'll eat berries and cheese and then I give her the fish oil. The SPEAK package says to give it with another fat and don't mention the antioxidant because the E it contains is an antioxidant, but I like to give it with a swig of O.J. as well, just to be sure it's used properly in the body. If I'm not able to get the fat, oil, & carnitine in at the same time, we skip the fish oil all together. It seems more important to avoid oxidative stress. Maybe one E or SPEAK every day or every other day has been helping with the increased consumption that happens with prolonged fish oil use. My dtr. hasnt' needed a special diet. We did a 2 1/2 month GFCF trial with no effect. > > And so far it's worked! My dtr. started out with a severe speech delay and all the classic soft signs at age 2. Now she's mainstream in every way, doesn't qualify for SD therapy and we're taking a summer break from private speech. Not sure if we'll need it in the fall. > > For newcomers, I'd highly recommend running the apraxia labs to consider in the links/files section of this group. It's **important** to find out if your child has a carnitine deficiency, as well as the other common metabolic defieincies found in our kids. It's all very individual, depends on your child's metabolic profile. Good luck! Debra in CA > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2009 Report Share Posted June 5, 2009 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...
Guest guest Posted June 5, 2009 Report Share Posted June 5, 2009 Why doesn't someone kick that person off the group that is advertising a dangerous product? I am angry that she advertised this to me after I read all the negative comments. I am going to tell everyone on my other groups not to do this study and not to give their kids " SPEAK " ! Those of you who are having good or okay results with SPEAK, do you ever think of the kids who got SIDS after vaccines and that your kids with autism/speech disorders/etc. or even typical kids may have just had a lesser reaction that may or may not have caused damage? I say get rid of it if it has caused this many people grief. > > 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...
Guest guest Posted June 6, 2009 Report Share Posted June 6, 2009 I'm curious to know (after 's comment about the EFAs helping) how many of the bad results were from those already on other oils, and how many of the good results were on new users. Personally, I had good results overall, and he was not on oils before this. I don't see how Speak has anything to do with vaccines, and I assume you mean get rid of Speak and not vaccines? I don't think of kids that got SIDS or autism after vaccines, because there are cases where identical twins (with identical vx records) had one child develop autism, or siblings where the first developed autism, the parents refused to vx other children, and they are also autistic. No medical treatment, whether it's vaccines, Speak, or even penicillin, is a one-size-fits-all solution. Before we start a war here, I'm NOT saying that vaccines don't cause autism, I know better than that, I'm just saying that we can't assume that what's bad for one child is bad for all. > > Why doesn't someone kick that person off the group that is advertising a dangerous product? I am angry that she advertised this to me after I read all the negative comments. I am going to tell everyone on my other groups not to do this study and not to give their kids " SPEAK " ! > > Those of you who are having good or okay results with SPEAK, do you ever think of the kids who got SIDS after vaccines and that your kids with autism/speech disorders/etc. or even typical kids may have just had a lesser reaction that may or may not have caused damage? I say get rid of it if it has caused this many people grief. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2009 Report Share Posted June 8, 2009 At the start of my journey, I would also be angry if someone knew of a product like Speak that could dramatically IMPROVE my child and did not share it! My daughter is on Speak (and was on the omegas + vit e d-alpha and gamma formula prior). Her progress and recovery have been amazing - a miracle for us! None of this is scientifically proven - that's the problem. So you are doing what you need to do and educating yourself to make an informed decison for your child. Good luck on your journey - it is a long one. There is no panacea. So you should learn from the shared experiences using various different therapies, diets, and supplements that have worked for others and formulate your own treatment plan. I still recommend omega + vit e gamma and d-alpha formula (which was promoted on this site long before speak) for kids with apraxia and sensory issues. What product(s) parents choose in order get this ratio is irrelevant. > Why doesn't someone kick that person off the group that is advertising a dangerous product? I am angry that she advertised this to me after I read all the negative comments. I am going to tell everyone on my other groups not to do this study and not to give their kids " SPEAK " ! > > Those of you who are having good or okay results with SPEAK, do you ever think of the kids who got SIDS after vaccines and that your kids with autism/speech disorders/etc. or even typical kids may have just had a lesser reaction that may or may not have caused damage? I say get rid of it if it has caused this many people grief. _______________________________________________ This e-mail may contain information that is confidential, privileged or otherwise protected from disclosure. If you are not an intended recipient of this e-mail, do not duplicate or redistribute it by any means. Please delete it and any attachments and notify the sender that you have received it in error. Unless specifically indicated, this e-mail is not an offer to buy or sell or a solicitation to buy or sell any securities, investment products or other financial product or service, an official confirmation of any transaction, or an official statement of Barclays. Any views or opinions presented are solely those of the author and do not necessarily represent those of Barclays. This e-mail is subject to terms available at the following link: www.barcap.com/emaildisclaimer. By messaging with Barclays you consent to the foregoing. Barclays Capital is the investment banking division of Barclays Bank PLC, a company registered in England (number 1026167) with its registered office at 1 Churchill Place, London, E14 5HP. This email may relate to or be sent from other members of the Barclays Group. _______________________________________________ Quote Link to comment Share on other sites More sharing options...
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