Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 Hello, I am new to the group, new to in general, and pretty overwhelmed. My beautiful 2.5 y.o. little boy has just been diagnosed with apraxia of speech. I am looking for any help and guidance anyone has for a " newbie " . I would love to hear more about diet and supplements, as we are pretty " holistic " in a lot of what our family does, but I am new to diet and how it may affect speech, etc... Any guidance with any thing is greatly appreciated. Thank you!! _____ From: [mailto: ] On Behalf Of kiddietalk Sent: Sunday, October 26, 2008 3:52 PM Subject: [ ] Update on Tanner and response to 2 messages " I am not sure why this information wasn't included in the " Educational Reference Fact Sheet " unless it was to cover the entire speak product, anyway fish oil can also have potential negative interactions when combined with other meds " Tina where did you hear this from " fish oil can also have potential negative interactions when combined with other meds " The only medication you should be careful of with fish oil is Coumadin and name a child in this group who is on Coumadin. (insert cricket sound here) And even then some have found in research that's not relevant either http://www.mdrlabs. <http://www.mdrlabs.com/essaycoumfish.htm> com/essaycoumfish.htm And this link from the NIH says " the omega-3 fatty acids have no documented adverse drug interactions, and appear to be safe (and possibly beneficial) in pregnancy and in children " " The omega-3 fatty acids offer some unique benefits, should they prove to be truly effective mood stabilizers. The advantages of the omega-3 fatty acids as mood stabilizers include the apparent acute efficacy in both the manic and depressive phases of bipolar disorder, their lack of toxicity, as well as high patient acceptance. In addition, omega-3 fatty acids confer some health benefits during chronic use, such as possible reduction in the risk of a fatal myocardial infarction. In addition, the omega-3 fatty acids have no documented adverse drug interactions, and appear to be safe (and possibly beneficial) in pregnancy and in children. " http://ods.od. <http://ods.od.nih.gov/news/conferences/w6w3_abstracts.html> nih.gov/news/conferences/w6w3_abstracts.html And Elena you wrote " I don't know where you are situated on this biomedical interventions continuum--among which fish oil and vit E are included BTW--- but if we are indeed dealing with a metabolic /autoimmune/food intolerance/ fatty acid malabsorption syndrome as per Dr. , " In the history of this group for almost a decade with thousands and thousands of members -and in the history of the world children have been given fish oil. Almost all (all?) fish oil contains vitamin E, however the megadosages of vitamin E crosses the line. I remember when I first brought fish oils to this group in 1999 Dr. Marilyn Agin and others were freaked out that fish oil would cause those sort of negative effects...nope -only good stuff. Years later the world would learn what a few already knew through massive amounts of research and then media attention that fish oils are safe and essential for every stage of life including neonatally and effective in helping in various conditions. The side effects if any of fish oils are temporary loose stools or temporary behavioral changes like terrible twos type or more hyper -stuff like that which was easily fixed if parents wanted by lowering the dosage and even then many waited it out and it disappeared in a few days to a week and surges came in. Dr. joined this group as a parent late 2005 and many of us increased the vitamin E from where it was a bit. Now with speak, increase the vitamin E in the fish oil from where it was to megadosages of vitamin E and K and we have read in this group severe negative reports from a number of parents including me for my own son Tanner when put on Speak -which is 's formula of megavitamins added to a formula of fish oils which we had found as a group to be benign and effective. In my opinion someone needs to do a case study of what we found in this group when children and young adults were put onto megadosages of vitamin E (and K too). Here's a list of reports and each one of these email addresses comes with a family behind it that can easily be contacted -the professionals that work with each child can easily be spoken to -it can be proved that none of these reports are rumors or " 3rd person reports " http://health. < /links/Pharma_Omega _Speak_reports_from_group_001224703760/> /group/ /links/Pharma_Omega_Speak_reports_ from_group_001224703760/ It's been over a month and my son is still not back 100% to where he was prior to being on Speak for around 2 weeks. Not only does this horrify me and my husband and all those that love Tanner -but it is greatly upsetting to Tanner which makes the pain even worse for us. For Tanner it's been over a month he's been off of Speak but this is not your typical regression. This is not " whoops ran out of fish oil " or " used the wrong brand of fish oil " or " too much fiber " type regression where you go back to the right formula and " poof " they are back in a day or two. This to me is something still unknown and far scarier. And something the two of you above should be aware of since I am under the impression that neither of you have put your own child on speak yet so I can tell you that it's easier to talk in theory than in reality. Or did either of you put your child on speak? This isn't about hurting someone's feelings because they had a theory and good for them that they did -but it is probably wrong. This is in my opinion protecting the majority of children from a treatment that to me I found to be worse than the condition. Unless you have some way of knowing prior to putting your child on megadosages of vitamin E...and vitamin K of hypervitaminosis and possible side effects of that in my opinion you ARE taking a risk based on an unvalidated (? or did we just prove it wrong?) theory. Here's how my 12 year old son Tanner was speaking prior to taking " speak " Tanner's talking page from February 6th 2008 http://www.debtsmar <http://www.debtsmart.net/talk/tanner.html> t.net/talk/tanner.html I was not informed of any risks at all about vitamin E except bleeding and was informed by that's why the vitamin K was added. I was hoping to see improvements in Tanner's sensory (he still doesn't feel pain like others) and perhaps who knows -he'll be able to tie his shoes better! Stupid stuff like that. But being I thought it was benign...why not? Tanner was only on Speak for around 2 weeks and has been off for it has to be a month now. After 2 weeks on Speak my son Tanner regressed back years to where he was groping -he opened his mouth and nothing came out. The look of horror on his face I will never forget. Of course I took him off but as horrified as we both were (Tanner and me) At that point however since all I ever knew were temporary regressions for both Tanner and all the others here throughout the almost 10 years now I was upset but more worried as to why did Tanner regress so much rather than freaked out. I got on the internet and found information about hypervitaminosis and myopathies for vitamin E -which IS serious and emailed that to Pharma Omega and asked for answers, for research. I've asked a few times since for answers about hypervitaminosis E or K and why we were not informed of any risks of this prior. I pointed out the reference to the quote that 3000 IU of vitamin E is safe for children was pulled from The LCP Solution -a book that was written 10 years ago. That the one co author Malcolm Nicholl is a friend of mine and he doesn't recall where that quote came from and that Dr. Stordy is now retired. Lori from this group pointed out that there are no research cited to this statement of 3,000 i.u. of Vitamin E to children being safe in the book. herself said on this group that she couldn't find the study that made this conclusion. Lori contacted the Council for Responsible Nutrition and they deny making this statement and sent her their statement " Thank you for clarifying with CRN. According to our scientist, CRN has not declared a position on vitamin E with regard to daily amount per pound of body weight nor daily amount for children. Our scientist, Hathcock, in a review published in the American Journal of Clinical Nutrition, concluded that vitamin E supplements appear safe for most adults in amounts less than or equal to 1600 IU. I have attached that review article for your reference. I hope this helps. Please let me know if you have further questions. " ...and I still ask -'was it a typo'?! If it was than it's a typo from 10 years ago that is, and apparently an unvalidated typo according to what Lori found out. Glenn went away on business after Tanner was on Speak for a few days and came back a few days after he was off of speak. Glenn left to go to NY and was FURIOUS when he heard his son try to talk when he came home! Tanner was struggling to say just about anything. Glenn was well aware that I wanted to know where the formula came from and I tried to tell all parties behind Speak that it wasn't the formula that Tanner or most I knew had their child on. Let's back up for a moment to why Glenn was even more angry. Glenn knew that I never thought the formula was right even before I started Tanner on it. (and why I agreed to find the focus group) I was told a few times by and those from Pharma Omega about why the formula was the way it was -based on 's theory and all the science and experts behind it. So here I was -my own son and belief against the science, the theory, and the " experts " I thought I was being a better person by swallowing my pride to listen to the experts and even though I still wasn't sure in my gut -I started to get excited that maybe this is 'it' -you know -the cure. Who am I to stand in the way of science and the experts? I agreed to help find the focus group and at that point was excited to share with everyone. Looking back it was the Santa Claus moment for sure. I knew he didn't exist but wanted to believe. Day 1 I started Tanner on speak and was excited to do so. He was excited to because he met and he heard me talk to her on the phone and Tanner as I have written in the archives was a huge vitamin E fan. Vitamin E wasn't the dramatic surges of fish oils -but Tanner wouldn't remember them as he's been on fish oils since 2 years 10 months old and he's now 12...but vitamin E in a 1/1 ratio of alpha to gamma and in a lower dosage helped his speech become a bit faster and clearer. And...it helped his sensory issue as Tanner doesn't feel pain like most. Unfortunately the sensory aspect faded and I figured he needed more vitamin E....but Tanner refused to take any more pills. Tanner's speech however never regressed back and I never tried to reduce or eliminate the vitamin E he was on which I regret now. What I suspect now is that Tanner's original surges on vitamin E were not due to any fat absorption issue -and not just because Tanner tested normal on all his blood work, not just because he had no signs of having a fat absorption problem and he is a very athletic, very tall 12 year old, and not just because he regressed so much on speak which was based and created for 's fat absorption theory...but because just due to Tanner being supplemented with fish oils would create a vitamin E deficiency. But that didn't mean he needed to be on megadosages of vitamin E nor did it mean he needed to be on vitamin E for more than a week or so at a time. And archive from 2005 of an archive from 2003 > > > > > vitamin e for stabilization of the fish oils is only one > > reason they add vitamin e to fish oils. Here's another from a > > message from the archives from 2003 as to why Nordic raised the > > e 'up' from 8 IUs to 15 IUs of alpha per capsule: > > > > From: " kiddietalk " <kiddietalk@> > > Date: Mon Dec 8, 2003 9:26 am > > Subject: Re: Your thoughts about Vit E in ProEFA > > > > And another thing to keep in mind...if a child is on fish oil...then > > he or she will need extra Vitamin E because.... > > > > " There is some concern that a diet rich in fish oil taken for many > > months may induce a deficiency of vitamin E. People who eat a diet > > high in fish or who take fish oil supplements may want to consider > > taking vitamin E supplements. " > > http://www.usadrug. <http://www.usadrug.com/IMCAccess/ConsSupplements/VitaminEcs.shtml> com/IMCAccess/ConsSupplements/VitaminEcs.shtml > > > http://health. < /message/40613> /group/ /message/40613 And here's another link on this http://jn.nutrition <http://jn.nutrition.org/cgi/reprint/121/4/484.pdf> ..org/cgi/reprint/121/4/484.pdf But forget all of that because clearly I did -back to day 1: I started Tanner on 6 speak plus 4 extra high gamma vitamin E capsules since Tanner had regressed the 2 other times I raised the alpha vitamin E over the gamma and I wanted to make sure he had enough gamma. No regressions and no surges the first 4 days. Day 5 On the 5th day he threw up starting at 4 AM. Severe diarrhea that came out like water. Tanner stayed home from school that day but I didn't think anything of this. Figured it was a virus. I ran out to Target and bought some Gatorade and made sure Tanner had that and some toast. By the afternoon however Tanner's vomiting and diarrhea had stopped completely and he was eating regular food. He ate regular dinner and after school his friend came over and he played with and his brother. The next morning (which is now the 6th day of speak) Tanner ate a normal breakfast and I gave him only 3 speak with 2 high gamma. I figured he was just sick the day before so I wanted to " cut back " on his dosage. That day the school called me and Tanner who had just come in from playing basketball felt very nauseous, " like I have to throw up " and wanted to come home. who I spoke with on the phone that day as I drove to the school to pick up Tanner suggested I only give him the speak and no extra vitamin E. Day 7 and 8 Day 7 and 8 of speak was just 4 speak and no extra vitamin E and Tanner's speech dramatically regressed in those 2 days. Days 9 to 12 (or could have been to 14) I had him on 4 speak and 2 high gamma vitamin E. This was when Glenn was away on business in NY and I asked Tanner if he wanted to stop and he said no -he still wanted to try it. If only Glenn were still home I know he would have made us stop. He got mad the 2 other times I tried to raise up the alpha E when encouraged me to do that and Tanner regressed. " What are you doing he was doing great?! " Looking back it does all seems nuts -I guess Tanner and I were both caught up in the dream. During this time was when Tanner started getting " really bad headaches " He insisted he wanted medication for his headache but I was resistant. Why do you have a headache Tanner you never get headaches?! I did give him a Motrin and he went to sleep for hours. There were at least 2 days like that and during that week he was sleeping far more than usual. He even slept through dinner a few times. I figured he was going through a growth spurt. He was sluggish and off during his basketball games too. We were now around 2 weeks on speak and during this time I was in contact with and Pharma Omega explaining in detail Tanner's regression in speech. I did mention the vomiting and all -but not the headaches -but again didn't really think at that point that one had anything to do with the other. I had yet to just get on the internet and do a simple search of the signs of " too much vitamin E " Again -I didn't like the regression in speech which was my main focus, but figured it was temporary. The second to last day: The last 2 days as Tanner continued to regress I tried lowering the speak even more and on the last 2 days he was on 2 speak, 2 ProEFA, 1 ProEPA, 2 mainly gamma vitamin E...but the regression was still there. The last day: The last day I'll never forget. Tanner stood outside in our driveway ready to walk to our neighbor's house who drives him to school and he went to say something to me and he opened his mouth...and nothing came out. He groped and his face was a look of horror. The next day I think was a Friday and I put him back on his 4 ProEFA and 2 ProEPA and no extra vitamin E and figured he would be back in a day or so. I can't remember if it was early that morning or late that night that I began my search into " why " vitamin E would make Tanner regress so much. At that point I wasn't even thinking of the vitamin K. I joked to myself that if instead of mixing it with megadosages of vitamin E they took my formula of fish oils and stuck it in a Twinkie I would have been better off with a Speak Twinkie and it still would have worked for Tanner. What was in this stuff that took a formula that was so tried and true for years and for so many others to make my 12 year old regress? It was that day that I learned about hypervitaminosis...but everything I read had to do with months of megadosages not days or weeks....but most everything outside of one hospital in India that was treating children with the rare hypovitaminosis E (vitamin E deficiency) which led to hypervitaminosis E (vitamin E poisoning) had to do with adults -not children. One day, two days, three days later...painful weeks later he was still not back and my worry turned into panic. It's been over a month now and Tanner still isn't back to being himself. He appears to have lapses on knowing how to say even simple sounds at times. Yesterday at Epcot's food and wine festival he went to ask for a hot chocolate and turned to me. He couldn't remember how to do the " h " sound. Yesterday he couldn't remember how to say the " g " sound for girl. Yesterday Tanner told me how hard it is to talk now. He used to love the way he was -and now he's so frustrated. I already told Tanner that I worked with him to teach him to talk once -if we have to do it again we will. It appears to me that the Speak has broke down pathways that have been there for years for Tanner. My aunt who has her PhD in nursing is horrified as well and says to her it sounds almost like what happens to those with Alzheimer's -except in those cases parts of the brain start dying and we hope for Tanner and the others like him it's just that the pathways are blocked somehow. Thank God Tanner's not stuck at the point he was at when still on Speak -and he has improved slowly from there but I pray that this lapse thing he's going through too is temporary -but who knows? Check the archives - last week we had to work on the letters " B " " J " and " K " in isolation...his lapses in simple sounds or words that he has known for years is frightening. It feels like ice water going through my veins when I think of what I may have done to him. That I may have poisoned him and don't know if he'll ever be back 100% to where he was prior. I think if only I knew about the signs of vitamin poisoning prior. Even the " normal " ones like the vomiting and the diarrhea and the headaches. I remember I took Tanner for a haircut and was explaining to his hair stylist why Tanner wasn't talking as well- told him about speak and at one point said " but thank God at least Tanner didn't have a seizure " stopped what he was doing and looked at me deadpan and said " it doesn't work like that. Tanner could have had a seizure and you never would have known it. He could have had one while he was sleeping " What's worse -that I gave him that Motrin and let him sleep for hours and hours when he got those horrible headaches and I'll never know what happened to his poor body during those 2 weeks or that I got more medical advice from Tanner's hair stylist then the professional that led me to this? I still have not received any advice on how to help Tanner from this point. As many here know I had to go to Tanner's school to present to the entire school why Tanner suddenly is having trouble speaking when he's been doing do well all this time. The school thought I put him on a " new medication " Search under " Tanner's magic plan today " This was the second time I had to do something like this -the last being in kindergarten. Fortunately everyone that knows Tanner has been so incredible with him. His teachers, friends, classmates at school, neighbors, basketball team -everyone is rallying around Tanner to support him. I wrote this post yesterday but guess it didn't post so today had more to add. Last night Glenn and Dakota and one of Dakota's friends went to Halloween Horror nights and me and Tanner went to Disney. I wrote " honestly nothing scares me more than what speak did to my son Tanner " . What does give me hope again is that he has improved to where most of the time he is able to talk now. Tanner isn't happy where he is- I'm happier than he is because I know how much worse he was and thank God he isn't stuck there. I have gone to a full packet of Threelac with Tanner today as that has appeared to help. So will keep everyone posted. I am buying probiotic drinks and there's even a probiotic chocolate I'm going to try. (the chocolate flavor I tried and loved was sold out) http://www.attunefo <http://www.attunefoods.com/chocolate-wellness-bar/> ods.com/chocolate-wellness-bar/ Because nobody in my opinion has ever put their child on megadosages of vitamin E and K before and nobody in my opinion has gone through what Tanner and a few other of the children that had regressed on Speak are going through before....there is that unknown....and that to me is frightening. Here are the results of this group from what was posted here. Think around 7 positive, 2 neutral and 12 or 14 negative. Tanner's one of the negative reports. http://health. < /links/Pharma_Omega _Speak_reports_from_group_001224703760/> /group/ /links/Pharma_Omega_Speak_reports_ from_group_001224703760/ ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 Hi and welcome! The following advice is just the basics from the " it's not broken " school of thought. I'd start with the basics of making sure you have good evaluations to secure appropriate diagnosis with not just an SLP if apraxia is suspected but a neurodevelopmental exam as well with either a pediatric neurologist or developmental pediatrician. I would try the fish oils but make sure it's an Omega 3/6 formula (more on that below) -talk to your child's MD about that as many approve or recommend that over the phone. Unless the basics do not work as they do for the majority or your child has been diagnosed with celiac disease or food allergies I would not recommend starting with any dramatic elimination or special diets which may not be needed and which should in my opinion be done under medical supervision. On the other hand of course try to make sure your child eats as healthy as possible and in the world of essential fatty acids you want to try to keep the saturated and trans fats as low as possible -so reduce intake of those happy meal fries and doughnuts to none or almost none. So...back to the basics! 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 October 26, 2008 Report Share Posted October 26, 2008 I'm so sorry to hear of Tanner's and the other children's regressions and physical problems with the Speak supplement. In terms of finding out what caused this problem, I'd ask if anyone had an MRI to rule out a mild intracranial hemorrhage? High dosage of vitamin E is associated with bleeding, and the small vessels in the brain are some of the " leakiest " around. Could explain the seizure type reactions. Anyone with residual motor weakness/visual changes? 3,000 IU of Vitamin E is a huge amount for children. From what I've read,(I'm NOT a MD or scientist) 1,600 IU is considered the safe limit for ADULTS. In this high dosage, perhaps the Vitamin K is not able to coagulate properly to compensate for the anticoagulant effect of the E. > > > > > > vitamin e for stabilization of the fish oils is only one > > > reason they add vitamin e to fish oils. Here's another from a > > > message from the archives from 2003 as to why Nordic raised the > > > e 'up' from 8 IUs to 15 IUs of alpha per capsule: > > > > > > From: " kiddietalk " <kiddietalk@> > > > Date: Mon Dec 8, 2003 9:26 am > > > Subject: Re: Your thoughts about Vit E in ProEFA > > > > > > And another thing to keep in mind...if a child is on fish > oil...then > > > he or she will need extra Vitamin E because.... > > > > > > " There is some concern that a diet rich in fish oil taken for many > > > months may induce a deficiency of vitamin E. People who eat a diet > > > high in fish or who take fish oil supplements may want to consider > > > taking vitamin E supplements. " > > > http://www.usadrug.com/IMCAccess/ConsSupplements/VitaminEcs.shtml > > > > > > /message/40613 > > And here's another link on this > http://jn.nutrition.org/cgi/reprint/121/4/484.pdf > > But forget all of that because clearly I did -back to day 1: > > I started Tanner on 6 speak plus 4 extra high gamma vitamin E > capsules since Tanner had regressed the 2 other times I raised the > alpha vitamin E over the gamma and I wanted to make sure he had > enough gamma. No regressions and no surges the first 4 days. > > Day 5 > > On the 5th day he threw up starting at 4 AM. Severe diarrhea that > came out like water. Tanner stayed home from school that day but I > didn't think anything of this. Figured it was a virus. I ran out > to Target and bought some Gatorade and made sure Tanner had that and > some toast. > > By the afternoon however Tanner's vomiting and diarrhea had stopped > completely and he was eating regular food. He ate regular dinner and > after school his friend came over and he played with and > his brother. The next morning (which is now the 6th day of speak) > Tanner ate a normal breakfast and I gave him only 3 speak with 2 high > gamma. I figured he was just sick the day before so I wanted to " cut > back " on his dosage. > > That day the school called me and Tanner who had just come in from > playing basketball felt very nauseous, " like I have to throw up " and > wanted to come home. who I spoke with on the phone that day > as I drove to the school to pick up Tanner suggested I only give him > the speak and no extra vitamin E. > > Day 7 and 8 > > Day 7 and 8 of speak was just 4 speak and no extra vitamin E and > Tanner's speech dramatically regressed in those 2 days. > > Days 9 to 12 (or could have been to 14) > > I had him on 4 speak and 2 high gamma vitamin E. This was when > Glenn was away on business in NY and I asked Tanner if he wanted to > stop and he said no -he still wanted to try it. If only Glenn were > still home I know he would have made us stop. He got mad the 2 other > times I tried to raise up the alpha E when encouraged me to > do that and Tanner regressed. " What are you doing he was doing > great?! " Looking back it does all seems nuts -I guess Tanner and I > were both caught up in the dream. > > During this time was when Tanner started getting " really bad > headaches " He insisted he wanted medication for his headache but I > was resistant. Why do you have a headache Tanner you never get > headaches?! I did give him a Motrin and he went to sleep for hours. > There were at least 2 days like that and during that week he was > sleeping far more than usual. He even slept through dinner a few > times. I figured he was going through a growth spurt. He was > sluggish and off during his basketball games too. > > We were now around 2 weeks on speak and during this time I was in > contact with and Pharma Omega explaining in detail Tanner's > regression in speech. I did mention the vomiting and all -but not > the headaches -but again didn't really think at that point that one > had anything to do with the other. I had yet to just get on the > internet and do a simple search of the signs of " too much vitamin E " > Again -I didn't like the regression in speech which was my main > focus, but figured it was temporary. > > The second to last day: > > The last 2 days as Tanner continued to regress I tried lowering the > speak even more and on the last 2 days he was on 2 speak, 2 ProEFA, 1 > ProEPA, 2 mainly gamma vitamin E...but the regression was still > there. > > The last day: > > The last day I'll never forget. Tanner stood outside in our driveway > ready to walk to our neighbor's house who drives him to school and he > went to say something to me and he opened his mouth...and nothing > came out. He groped and his face was a look of horror. > > The next day I think was a Friday and I put him back on his 4 ProEFA > and 2 ProEPA and no extra vitamin E and figured he would be back in a > day or so. I can't remember if it was early that morning or late > that night that I began my search into " why " vitamin E would make > Tanner regress so much. At that point I wasn't even thinking of the > vitamin K. I joked to myself that if instead of mixing it with > megadosages of vitamin E they took my formula of fish oils and stuck > it in a Twinkie I would have been better off with a Speak Twinkie and > it still would have worked for Tanner. What was in this stuff that > took a formula that was so tried and true for years and for so many > others to make my 12 year old regress? It was that day that I > learned about hypervitaminosis...but everything I read had to do with > months of megadosages not days or weeks....but most everything > outside of one hospital in India that was treating children with the > rare hypovitaminosis E (vitamin E deficiency) which led to > hypervitaminosis E (vitamin E poisoning) had to do with adults -not > children. > > One day, two days, three days later...painful weeks later he was > still not back and my worry turned into panic. It's been over a > month now and Tanner still isn't back to being himself. He appears > to have lapses on knowing how to say even simple sounds at times. > Yesterday at Epcot's food and wine festival he went to ask for a hot > chocolate and turned to me. He couldn't remember how to do the " h " > sound. Yesterday he couldn't remember how to say the " g " sound for > girl. Yesterday Tanner told me how hard it is to talk now. He used > to love the way he was -and now he's so frustrated. I already told > Tanner that I worked with him to teach him to talk once -if we have > to do it again we will. > > It appears to me that the Speak has broke down pathways that have > been there for years for Tanner. My aunt who has her PhD in nursing > is horrified as well and says to her it sounds almost like what > happens to those with Alzheimer's -except in those cases parts of the > brain start dying and we hope for Tanner and the others like him it's > just that the pathways are blocked somehow. Thank God Tanner's not > stuck at the point he was at when still on Speak -and he has improved > slowly from there but I pray that this lapse thing he's going through > too is temporary -but who knows? > > Check the archives - last week we had to work on the letters " B " " J " > and " K " in isolation...his lapses in simple sounds or words that he > has known for years is frightening. It feels like ice water going > through my veins when I think of what I may have done to him. That I > may have poisoned him and don't know if he'll ever be back 100% to > where he was prior. I think if only I knew about the signs of > vitamin poisoning prior. Even the " normal " ones like the vomiting > and the diarrhea and the headaches. I remember I took Tanner for a > haircut and was explaining to his hair stylist why Tanner > wasn't talking as well- told him about speak and at one point > said " but thank God at least Tanner didn't have a seizure " > stopped what he was doing and looked at me deadpan and said " it > doesn't work like that. Tanner could have had a seizure and you > never would have known it. He could have had one while he was > sleeping " What's worse -that I gave him that Motrin and let him > sleep for hours and hours when he got those horrible headaches and > I'll never know what happened to his poor body during those 2 weeks > or that I got more medical advice from Tanner's hair stylist then the > professional that led me to this? I still have not received any > advice on how to help Tanner from this point. > > As many here know I had to go to Tanner's school to present to the entire school why Tanner suddenly is having trouble speaking when he's been doing do well all this time. The school thought I put him on a " new medication " Search under " Tanner's magic plan today " This was the second time I had to do something like this -the last being in kindergarten. Fortunately everyone that knows Tanner has been so incredible with him. His teachers, friends, classmates at school, neighbors, basketball team -everyone is rallying around Tanner to support him. > > > I wrote this post yesterday but guess it didn't post so today had > more to add. Last night Glenn and Dakota and one of Dakota's friends > went to Halloween Horror nights and me and Tanner went to Disney. I > wrote " honestly nothing scares me more than what speak did to my son > Tanner " . What does give me hope again is that he has improved to > where most of the time he is able to talk now. Tanner isn't happy > where he is- I'm happier than he is because I know how much worse he > was and thank God he isn't stuck there. > > I have gone to a full packet of Threelac with Tanner today as that > has appeared to help. So will keep everyone posted. I am buying > probiotic drinks and there's even a probiotic chocolate I'm going to > try. (the chocolate flavor I tried and loved was sold out) > http://www.attunefoods.com/chocolate-wellness-bar/ > > Because nobody in my opinion has ever put their child on megadosages > of vitamin E and K before and nobody in my opinion has gone through > what Tanner and a few other of the children that had regressed on > Speak are going through before....there is that unknown....and that > to me is frightening. > > Here are the results of this group from what was posted here. Think > around 7 positive, 2 neutral and 12 or 14 negative. Tanner's one of > the negative reports. > /links/Pharma_ Omega_Speak_reports_from_group_001224703760/ > > > ===== > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 I am so sorry to hear about Tanner! That is so scary! I know how hard we have fought to get our daughter to where she is now. I can only imagine her regressing to the point that Tanner has. It sounds like he IS getting better. I hope it will happen quickly. He'll be in my thoughts. Aubrey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 Thanks for the head's up -and yes I had been thinking of the MRI. Tanner has not had the headaches at all since being off speak. No vision or motor aspects that I noticed ever. " just " the regression in speech, headaches and vomiting and other things I covered in my email. Tanner does appear to be improving in speech but he's still having these " blocks " Like tonight he was reading outloud and you can hear the struggle- he stopped for the word " was " and just said " it's an easy word and I can't say it " He said the word " word " in that sentence but couldn't say the word " was " Just strange stuff like that. I'll ask tomorrow when I call but would you (or anyone) know if Tanner did have mild intracranial bleeding of some sort would that blood absorb on it's own and if not what do they do for that? If it does absorb would it still show up in the MRI? How serious is it? And yes I know others are taking their children for MRIs too...but nobody mentioned mild intracranial hemorrhage prior to you bringing it up. Scary. ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 Thanks Aubrey. From your lips to God's ears!!!! ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 Tamaro, founder of the vitamin k group would be someone I would consult with regarding what has happened. Here is her email address. I have detailed a bit about the situation here but she may be better to give you some answers. She has explained to me what can be done to help balance out what may have taken place. In her opinion the supplement was lopsided and she does have some things that can be done. I think she would be fine with helping anyone who had issues with the Speak supplement. You can email her and explain the situation. catherine tamaro <ctamaro@...> Also, have you had Tanner's blood cholestral levels checked? Have you seen any recovery at all since the initial regression. We are still hoping for Tanner that he makes a fulll recovery. We have learned a lot from his unfortunate experience. He definitely took on for the team. Give him our well wishes. and Craig Nickerson kiddietalk wrote: > " I am not sure why this information wasn't included in > the " Educational Reference Fact Sheet " unless it was to cover the > entire speak product, anyway fish oil can also have potential > negative interactions when combined with other meds " > > Tina where did you hear this from " fish oil can also have potential > negative interactions when combined with other meds " > > The only medication you should be careful of with fish oil is > Coumadin and name a child in this group who is on Coumadin. (insert > cricket sound here) And even then some have found in research > that's not relevant either http://www.mdrlabs.com/essaycoumfish.htm > > And this link from the NIH says " the omega-3 fatty acids have no > documented adverse drug interactions, and appear to be > safe (and possibly beneficial) in pregnancy and in children " > > " The omega-3 fatty acids offer some unique benefits, should they > prove to be truly effective mood stabilizers. The advantages of the > omega-3 fatty acids as mood stabilizers include the apparent acute > efficacy in both the manic and depressive phases of bipolar > disorder, their lack of toxicity, as well as high patient > acceptance. In addition, omega-3 fatty acids confer some health > benefits during chronic use, such as possible reduction in the risk > of a fatal myocardial infarction. In addition, the omega-3 fatty > acids have no documented adverse drug interactions, and appear to be > safe (and possibly beneficial) in pregnancy and in children. " > http://ods.od.nih.gov/news/conferences/w6w3_abstracts.html > > And Elena you wrote > " I don't know where you are situated on this biomedical interventions > continuum--among which fish oil and vit E are included BTW--- but if > we are indeed dealing with a metabolic /autoimmune/food intolerance/ > fatty acid malabsorption syndrome as per Dr. , " > > In the history of this group for almost a decade with thousands and > thousands of members -and in the history of the world children have > been given fish oil. Almost all (all?) fish oil contains vitamin E, > however the megadosages of vitamin E crosses the line. > > I remember when I first brought fish oils to this group in 1999 Dr. > Marilyn Agin and others were freaked out that fish oil would cause > those sort of negative effects...nope -only good stuff. Years later > the world would learn what a few already knew through massive amounts > of research and then media attention that fish oils are safe and > essential for every stage of life including neonatally and effective > in helping in various conditions. The side effects if any of fish > oils are temporary loose stools or temporary behavioral changes like > terrible twos type or more hyper -stuff like that which was easily > fixed if parents wanted by lowering the dosage and even then many > waited it out and it disappeared in a few days to a week and surges > came in. > > Dr. joined this group as a parent late 2005 and many of us > increased the vitamin E from where it was a bit. Now with speak, > increase the vitamin E in the fish oil from where it was to > megadosages of vitamin E and K and we have read in this group severe > negative reports from a number of parents including me for my own son > Tanner when put on Speak -which is 's formula of megavitamins > added to a formula of fish oils which we had found as a group to be > benign and effective. > > In my opinion someone needs to do a case study of what we found in > this group when children and young adults were put onto megadosages > of vitamin E (and K too). Here's a list of reports and each one of > these email addresses comes with a family behind it that can easily > be contacted -the professionals that work with each child can easily > be spoken to -it can be proved that none of these reports are rumors > or " 3rd person reports " > /links/Pharma_Omega_Spea\ k_reports_from_group_001224703760/ > > It's been over a month and my son is still not back 100% to where he > was prior to being on Speak for around 2 weeks. Not only does this > horrify me and my husband and all those that love Tanner -but it is > greatly upsetting to Tanner which makes the pain even worse for us. > > For Tanner it's been over a month he's been off of Speak but this is > not your typical regression. This is not " whoops ran out of fish > oil " or " used the wrong brand of fish oil " or " too much fiber " type > regression where you go back to the right formula and " poof " they are > back in a day or two. This to me is something still unknown and far > scarier. And something the two of you above should be aware of since > I am under the impression that neither of you have put your own child > on speak yet so I can tell you that it's easier to talk in theory > than in reality. Or did either of you put your child on speak? > > This isn't about hurting someone's feelings because they had a theory > and good for them that they did -but it is probably wrong. This is > in my opinion protecting the majority of children from a treatment > that to me I found to be worse than the condition. > > Unless you have some way of knowing prior to putting your child on > megadosages of vitamin E...and vitamin K of hypervitaminosis and > possible side effects of that in my opinion you ARE taking a risk > based on an unvalidated (? or did we just prove it wrong?) theory. > Here's how my 12 year old son Tanner was speaking prior to > taking " speak " Tanner's talking page from February 6th 2008 > http://www.debtsmart.net/talk/tanner.html > > I was not informed of any risks at all about vitamin E except > bleeding and was informed by that's why the vitamin K was > added. I was hoping to see improvements in Tanner's sensory (he > still doesn't feel pain like others) and perhaps who knows -he'll be > able to tie his shoes better! Stupid stuff like that. But being I > thought it was benign...why not? > > Tanner was only on Speak for around 2 weeks and has been off for it > has to be a month now. After 2 weeks on Speak my son Tanner > regressed back years to where he was groping -he opened his mouth and > nothing came out. The look of horror on his face I will never > forget. Of course I took him off but as horrified as we both were > (Tanner and me) At that point however since all I ever knew were > temporary regressions for both Tanner and all the others here > throughout the almost 10 years now I was upset but more worried as to > why did Tanner regress so much rather than freaked out. I got on > the internet and found information about hypervitaminosis and > myopathies for vitamin E -which IS serious and emailed that to Pharma > Omega and asked for answers, for research. I've asked a few times > since for answers about hypervitaminosis E or K and why we were not > informed of any risks of this prior. I pointed out the reference to > the quote that 3000 IU of vitamin E is safe for children was pulled > from The LCP Solution -a book that was written 10 years ago. That > the one co author Malcolm Nicholl is a friend of mine and he doesn't > recall where that quote came from and that Dr. Stordy is now > retired. Lori from this group pointed out that there are no research > cited to this statement of 3,000 i.u. of Vitamin E to children being > safe in the book. herself said on this group that she > couldn't find the study that made this conclusion. Lori contacted > the Council for Responsible Nutrition and they deny making this > statement and sent her their statement " Thank you for clarifying > with CRN. According to our scientist, CRN has not declared a > position on vitamin E with regard to daily amount per pound of body > weight nor daily amount for children. Our scientist, Hathcock, > in a review published in the American Journal of Clinical Nutrition, > concluded that vitamin E supplements appear safe for most adults in > amounts less than or equal to 1600 IU. I have attached that review > article for your reference. I hope this helps. Please let me know > if you have further questions. " ...and I still ask -'was it a > typo'?! If it was than it's a typo from 10 years ago that is, and > apparently an unvalidated typo according to what Lori found out. > > Glenn went away on business after Tanner was on Speak for a few days and > came back a few days after he was off of speak. > > Glenn left to go to NY and was FURIOUS when he heard his son try > to talk when he came home! Tanner was struggling to say just about > anything. Glenn was well aware that I wanted to know where the > formula came from and I tried to tell all parties behind Speak that > it wasn't the formula that Tanner or most I knew had their child on. > > Let's back up for a moment to why Glenn was even more angry. > > Glenn knew that I never thought the formula was right even before I started Tanner on it. (and why I agreed to find the focus group) > > I was told a few times by and those from Pharma Omega about > why the formula was the way it was -based on 's theory and all > the science and experts behind it. So here I was -my own son and > belief against the science, the theory, and the " experts " > I thought I was being a > better person by swallowing my pride to listen to the experts and > even though I still wasn't sure in my gut -I started to get excited > that maybe this is 'it' -you know -the cure. Who am I to stand in > the way of science and the experts? I agreed to help find the focus > group and at that point was excited to share with everyone. Looking > back it was the Santa Claus moment for sure. I knew he didn't exist > but wanted to believe. > > Day 1 > > I started Tanner on speak and was excited to do so. He was excited > to because he met and he heard me talk to her on the phone > and Tanner as I have written in the archives was a huge vitamin E > fan. Vitamin E wasn't the dramatic surges of fish oils -but Tanner > wouldn't remember them as he's been on fish oils since 2 years 10 > months old and he's now 12...but vitamin E in a 1/1 ratio of alpha to > gamma and in a lower dosage helped his speech become a bit faster and > clearer. And...it helped his sensory issue as Tanner doesn't feel > pain like most. Unfortunately the sensory aspect faded and I figured > he needed more vitamin E....but Tanner refused to take any more > pills. Tanner's speech however never regressed back and I never > tried to reduce or eliminate the vitamin E he was on which I regret > now. What I suspect now is that Tanner's original surges on vitamin > E were not due to any fat absorption issue -and not just because > Tanner tested normal on all his blood work, not just because he had > no signs of having a fat absorption problem and he is a very > athletic, very tall 12 year old, and not just because he regressed so > much on speak which was based and created for 's fat > absorption theory...but because just due to Tanner being supplemented > with fish oils would create a vitamin E deficiency. But that didn't > mean he needed to be on megadosages of vitamin E nor did it mean he > needed to be on vitamin E for more than a week or so at a time. > > And archive from 2005 of an archive from 2003 > >> >> >>> vitamin e for stabilization of the fish oils is only one >>> reason they add vitamin e to fish oils. Here's another from a >>> message from the archives from 2003 as to why Nordic raised the >>> e 'up' from 8 IUs to 15 IUs of alpha per capsule: >>> >>> From: " kiddietalk " <kiddietalk@> >>> Date: Mon Dec 8, 2003 9:26 am >>> Subject: Re: Your thoughts about Vit E in ProEFA >>> >>> And another thing to keep in mind...if a child is on fish >>> > oil...then > >>> he or she will need extra Vitamin E because.... >>> >>> " There is some concern that a diet rich in fish oil taken for many >>> months may induce a deficiency of vitamin E. People who eat a diet >>> high in fish or who take fish oil supplements may want to consider >>> taking vitamin E supplements. " >>> http://www.usadrug.com/IMCAccess/ConsSupplements/VitaminEcs.shtml >>> >>> > /message/40613 > > And here's another link on this > http://jn.nutrition.org/cgi/reprint/121/4/484.pdf > > But forget all of that because clearly I did -back to day 1: > > I started Tanner on 6 speak plus 4 extra high gamma vitamin E > capsules since Tanner had regressed the 2 other times I raised the > alpha vitamin E over the gamma and I wanted to make sure he had > enough gamma. No regressions and no surges the first 4 days. > > Day 5 > > On the 5th day he threw up starting at 4 AM. Severe diarrhea that > came out like water. Tanner stayed home from school that day but I > didn't think anything of this. Figured it was a virus. I ran out > to Target and bought some Gatorade and made sure Tanner had that and > some toast. > > By the afternoon however Tanner's vomiting and diarrhea had stopped > completely and he was eating regular food. He ate regular dinner and > after school his friend came over and he played with and > his brother. The next morning (which is now the 6th day of speak) > Tanner ate a normal breakfast and I gave him only 3 speak with 2 high > gamma. I figured he was just sick the day before so I wanted to " cut > back " on his dosage. > > That day the school called me and Tanner who had just come in from > playing basketball felt very nauseous, " like I have to throw up " and > wanted to come home. who I spoke with on the phone that day > as I drove to the school to pick up Tanner suggested I only give him > the speak and no extra vitamin E. > > Day 7 and 8 > > Day 7 and 8 of speak was just 4 speak and no extra vitamin E and > Tanner's speech dramatically regressed in those 2 days. > > Days 9 to 12 (or could have been to 14) > > I had him on 4 speak and 2 high gamma vitamin E. This was when > Glenn was away on business in NY and I asked Tanner if he wanted to > stop and he said no -he still wanted to try it. If only Glenn were > still home I know he would have made us stop. He got mad the 2 other > times I tried to raise up the alpha E when encouraged me to > do that and Tanner regressed. " What are you doing he was doing > great?! " Looking back it does all seems nuts -I guess Tanner and I > were both caught up in the dream. > > During this time was when Tanner started getting " really bad > headaches " He insisted he wanted medication for his headache but I > was resistant. Why do you have a headache Tanner you never get > headaches?! I did give him a Motrin and he went to sleep for hours. > There were at least 2 days like that and during that week he was > sleeping far more than usual. He even slept through dinner a few > times. I figured he was going through a growth spurt. He was > sluggish and off during his basketball games too. > > We were now around 2 weeks on speak and during this time I was in > contact with and Pharma Omega explaining in detail Tanner's > regression in speech. I did mention the vomiting and all -but not > the headaches -but again didn't really think at that point that one > had anything to do with the other. I had yet to just get on the > internet and do a simple search of the signs of " too much vitamin E " > Again -I didn't like the regression in speech which was my main > focus, but figured it was temporary. > > The second to last day: > > The last 2 days as Tanner continued to regress I tried lowering the > speak even more and on the last 2 days he was on 2 speak, 2 ProEFA, 1 > ProEPA, 2 mainly gamma vitamin E...but the regression was still > there. > > The last day: > > The last day I'll never forget. Tanner stood outside in our driveway > ready to walk to our neighbor's house who drives him to school and he > went to say something to me and he opened his mouth...and nothing > came out. He groped and his face was a look of horror. > > The next day I think was a Friday and I put him back on his 4 ProEFA > and 2 ProEPA and no extra vitamin E and figured he would be back in a > day or so. I can't remember if it was early that morning or late > that night that I began my search into " why " vitamin E would make > Tanner regress so much. At that point I wasn't even thinking of the > vitamin K. I joked to myself that if instead of mixing it with > megadosages of vitamin E they took my formula of fish oils and stuck > it in a Twinkie I would have been better off with a Speak Twinkie and > it still would have worked for Tanner. What was in this stuff that > took a formula that was so tried and true for years and for so many > others to make my 12 year old regress? It was that day that I > learned about hypervitaminosis...but everything I read had to do with > months of megadosages not days or weeks....but most everything > outside of one hospital in India that was treating children with the > rare hypovitaminosis E (vitamin E deficiency) which led to > hypervitaminosis E (vitamin E poisoning) had to do with adults -not > children. > > One day, two days, three days later...painful weeks later he was > still not back and my worry turned into panic. It's been over a > month now and Tanner still isn't back to being himself. He appears > to have lapses on knowing how to say even simple sounds at times. > Yesterday at Epcot's food and wine festival he went to ask for a hot > chocolate and turned to me. He couldn't remember how to do the " h " > sound. Yesterday he couldn't remember how to say the " g " sound for > girl. Yesterday Tanner told me how hard it is to talk now. He used > to love the way he was -and now he's so frustrated. I already told > Tanner that I worked with him to teach him to talk once -if we have > to do it again we will. > > It appears to me that the Speak has broke down pathways that have > been there for years for Tanner. My aunt who has her PhD in nursing > is horrified as well and says to her it sounds almost like what > happens to those with Alzheimer's -except in those cases parts of the > brain start dying and we hope for Tanner and the others like him it's > just that the pathways are blocked somehow. Thank God Tanner's not > stuck at the point he was at when still on Speak -and he has improved > slowly from there but I pray that this lapse thing he's going through > too is temporary -but who knows? > > Check the archives - last week we had to work on the letters " B " " J " > and " K " in isolation...his lapses in simple sounds or words that he > has known for years is frightening. It feels like ice water going > through my veins when I think of what I may have done to him. That I > may have poisoned him and don't know if he'll ever be back 100% to > where he was prior. I think if only I knew about the signs of > vitamin poisoning prior. Even the " normal " ones like the vomiting > and the diarrhea and the headaches. I remember I took Tanner for a > haircut and was explaining to his hair stylist why Tanner > wasn't talking as well- told him about speak and at one point > said " but thank God at least Tanner didn't have a seizure " > stopped what he was doing and looked at me deadpan and said " it > doesn't work like that. Tanner could have had a seizure and you > never would have known it. He could have had one while he was > sleeping " What's worse -that I gave him that Motrin and let him > sleep for hours and hours when he got those horrible headaches and > I'll never know what happened to his poor body during those 2 weeks > or that I got more medical advice from Tanner's hair stylist then the > professional that led me to this? I still have not received any > advice on how to help Tanner from this point. > > As many here know I had to go to Tanner's school to present to the entire school why Tanner suddenly is having trouble speaking when he's been doing do well all this time. The school thought I put him on a " new medication " Search under " Tanner's magic plan today " This was the second time I had to do something like this -the last being in kindergarten. Fortunately everyone that knows Tanner has been so incredible with him. His teachers, friends, classmates at school, neighbors, basketball team -everyone > is rallying around Tanner to support him. > > > I wrote this post yesterday but guess it didn't post so today had > more to add. Last night Glenn and Dakota and one of Dakota's friends > went to Halloween Horror nights and me and Tanner went to Disney. I > wrote " honestly nothing scares me more than what speak did to my son > Tanner " . What does give me hope again is that he has improved to > where most of the time he is able to talk now. Tanner isn't happy > where he is- I'm happier than he is because I know how much worse he > was and thank God he isn't stuck there. > > I have gone to a full packet of Threelac with Tanner today as that > has appeared to help. So will keep everyone posted. I am buying > probiotic drinks and there's even a probiotic chocolate I'm going to > try. (the chocolate flavor I tried and loved was sold out) > http://www.attunefoods.com/chocolate-wellness-bar/ > > Because nobody in my opinion has ever put their child on megadosages > of vitamin E and K before and nobody in my opinion has gone through > what Tanner and a few other of the children that had regressed on > Speak are going through before....there is that unknown....and that > to me is frightening. > > Here are the results of this group from what was posted here. Think > around 7 positive, 2 neutral and 12 or 14 negative. Tanner's one of > the negative reports. > /links/Pharma_Omega_Spea\ k_reports_from_group_001224703760/ > > > ===== > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 Thanks ! Just emailed . Yes we have noticed improvements in Tanner but these blocks he's having are so strange. Like how can he have trouble reading the word " was " and come to a complete halt trying to say it...but be able to say " I can't say this word and it's an easy word " ?!! I know all the tricks as we've gone through this stage years ago. I just relaxed and waited for him as if it's no big deal he couldn't say " was " I do notice once I say it -just like with typical apraxia he finds it easier to try to say it after me. But last week with the " b " sound even hearing it he couldn't do it at first -so guess he's better with his blocks in that way too. Any word or sound he has trouble saying we practice over and over. Like today at any random time I'd walk over to him and say " Can I help you? " and he had to say " I'd like a hot chocolate " or " Can I have a hot chocolate " since he couldn't say the word " hot " yesterday. Yesterday we were walking around Disney practicing each sound with every vowel after it. Yes people looked at us but most smiled and I really didn't care what anyone thought. On Space Mountain I noticed his scream is back to being flat again -I notice things like that. I was sitting in back of Tanner trying to get him to scream louder. We went on 2 times in a row but guess we'll just have to go back again next week and try again. (ride therapy was always my favoritist!!) thanks for all your help -you've been amazing!!! ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 Interesting comment about the ride therapy. My husband and I always notice that the boys have such great days when we are at the amusement park. We thought it was because they were more motivated. Last year I noticed my boys did well after they were on trampolines, so I made my husband go buy one and set it up. Not to sure what he will think of a backyard rollercoaster. Let me know what says. I hope it is helpful. I think she may have some ideas for labs or other tests to see what has taken place. I would be concerned with the blocks though. That is why I suggest the cholestral checks. kiddietalk wrote: > Thanks ! > > Just emailed . Yes we have noticed improvements in Tanner > but these blocks he's having are so strange. Like how can he have > trouble reading the word " was " and come to a complete halt trying to > say it...but be able to say " I can't say this word and it's an easy > word " ?!! I know all the tricks as we've gone through this stage > years ago. I just relaxed and waited for him as if it's no big deal > he couldn't say " was " I do notice once I say it -just like with > typical apraxia he finds it easier to try to say it after me. But > last week with the " b " sound even hearing it he couldn't do it at > first -so guess he's better with his blocks in that way too. > > Any word or sound he has trouble saying we practice over and over. > Like today at any random time I'd walk over to him and say " Can I > help you? " and he had to say " I'd like a hot chocolate " or " Can I > have a hot chocolate " since he couldn't say the word " hot " > yesterday. Yesterday we were walking around Disney practicing each > sound with every vowel after it. Yes people looked at us but most > smiled and I really didn't care what anyone thought. On Space > Mountain I noticed his scream is back to being flat again -I notice > things like that. I was sitting in back of Tanner trying to get him > to scream louder. We went on 2 times in a row but guess we'll just > have to go back again next week and try again. (ride therapy was > always my favoritist!!) > > thanks for all your help -you've been amazing!!! > > ===== > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 Interesting. We are doing E and came upon a recent block in th sound. At this age they say it as f anyway but my son lost the ability to say " firtenn " and " firty. " I would be very interested in what comes up with. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2008 Report Share Posted October 27, 2008 > The excess blood will show up on an MRI. Mild leaks will get reabsorbed by the body. The main thing is to stop the leaking. An MRI would also show if there were any blood clots formed. This could also be happening IF the Vitamin K was too high and overcompensated for the E, thereby making clots. Small clots block the smallest diameter blood vessels, those found in the brain. Until its reabsorbed, you can get some " short circuit " type reactions neurologically. Sort of like spilling coffee on an electrical device. When the coffee dries up, the device works again. Its different from an active bleed where the blood vessel itself was damaged like a blown out tire and needs to be clamped. Now this is just my opinion, but everyone please remeber the only difference between beneficial medicine and toxic poison is the dose or the amount given. If someone is giving 5,000 times the recommended dosage of ANYTHING, red flags should be going off. Check with your doctor, pharmacist, or nurse and see if they think its a good thing to try. Best of Luck to all > Thanks for the head's up -and yes I had been thinking of the > MRI. Tanner has not had the headaches at all since being off > speak. No vision or motor aspects that I noticed ever. " just " the > regression in speech, headaches and vomiting and other things I > covered in my email. Tanner does appear to be improving in speech > but he's still having these " blocks " Like tonight he was reading > outloud and you can hear the struggle- he stopped for the word " was " > and just said " it's an easy word and I can't say it " He said the > word " word " in that sentence but couldn't say the word " was " Just > strange stuff like that. > > I'll ask tomorrow when I call but would you (or anyone) know if > Tanner did have mild intracranial bleeding of some sort would that > blood absorb on it's own and if not what do they do for that? If it > does absorb would it still show up in the MRI? How serious is it? > > And yes I know others are taking their children for MRIs too...but > nobody mentioned mild intracranial hemorrhage prior to you bringing > it up. Scary. > > ===== > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2008 Report Share Posted October 27, 2008 > This to me is something still unknown and far > scarier. And something the two of you above should be aware of since > I am under the impression that neither of you have put your own child > on speak yet so I can tell you that it's easier to talk in theory > than in reality. Or did either of you put your child on speak? : You can go in the archives and find my message about using speak with Landon! It won't happen--because as I have stated many times to this group Landon is like Tanner, and I already tried the (alpha) Vitamin E alone and it caused Landon to regress with speech and behavior. I posted that information around Sept. 2007, that my son can't take higher doses-800iu-of alpha or he will regress. He needs the 1:1 ratio of alpha/gamma. So no...Landon won't be on Speak any time soon. There is no need for me to put my son on a product to watch him regress. Not sure why you keep bringing up Speak and Landon--thought I was very clear on the phone and to the group that I would not put my son on Speak because that is not the Vitamin E formula that works best for him which you also already know/knew about Landon. We also spoke on the phone about you sending me a box of Speak to try and what was my answer? No--I'm not going to watch my son regress. I have warned parents about possible regressions in the past messages. I have urged parents to talk to their pediatricians about using supplements. Not sure why you have included me in the above paragraph when you already have that information about Landon. Tina Quote Link to comment Share on other sites More sharing options...
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