Guest guest Posted June 4, 2006 Report Share Posted June 4, 2006 On Jun 4, 2006, at 9:48 PM, wrote: > Many of you have also read my theory that for those kids responding as > remarkably as my son to omega supplements, I suspect some fatty acid > metabolism disorder is involved. I have several collaborators - one an > expert in fatty acid metabolism - but again past work was in sickle > cell, > and another looking at oxidative stress (who already has data > collected on > kids with autism, who is interested in the apraxia question). To > start, I'm > wanting to look at amino acids, cytokines & fatty acids in the red > blood > cell (reflects brain biology) and within the plasma, and also study > the > Glutathione pathway - which is disrupted in many conditions, including > autism. Glutathione in your cells is one of the pathways that keeps > all the > inflammation/oxidative stress in balance. If it is deficient, then > cells are > susceptible to oxidants and toxins without defense. I'm really > oversimplifying things here. Hi , I just wanted to make a comment off list regarding the direction of your research. My older daughter currently takes EFAs as do I. She takes it for OCD symptoms, and it also makes her less moody (she's 13). I also take it. I've become a real believer in the whole concept (and I'm a skeptical person by nature). I have a son with Tourette syndrome and sensory issues as well as an auditory processing disorder. We are working to find some type of EFA that he will tolerate as it has been shown to help with the sensory issues and possibly the tics. (I'm also working to get my daughter who we suspect has Apraxia taking the EFA). I give all that info to get to my point which is that I've done a lot of research on EFA, and I am not thinking that certain subgroups of people have some type of metabolic problem that causes them to need more EFA, as much as I am convinced that all of us *need* more EFA than we are getting. (Thus the word *essential*). What I've come across in my research is that due to changes in how food is produced and marketed, foods that used to be relatively high in EFA are not any more. Therefore many, many people are deficient in EFAs and are reacting to that deficiency in a variety of ways. Anyway, I find all this research fascinating. Jeanne jwestpha@... NBCT - Exceptional Needs (2000) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2006 Report Share Posted June 4, 2006 I agree with you completely - ie a little (or maybe a lot) of fish oil is good for all of us. But apraxia is neurologically based motor planning disorder - there is more to it than just a deficiency. Many people are deficient and do not have problems talking. In general, apraxia is rare, even with the increase in numbers. Abnormal fatty acid metabolism (depending on what enzyme and which metabolite is abnormal) can manifest in many ways. Adrenoleukodystrophy is probably one of the most severe fatty acid metabolism disorders I can think of (Lorenzo's oil). It gave me chills to watch the way they portrayed Lorenzo's deterioration - because when he was talking (or having trouble talking) - he sounded just like my apraxic child. No that's good acting. And the coordination problems - mild in the beginning - similar the the dyspraxic child. The bottom line is that normal fatty acid metabolism is important to speech production and coordination, can impact tone etc (among a very long list of other things). For apraxia this is more than just a nutritional deficiency, although for whatever reason there is an increased requirement. There are many possible causes of an increased requirement of DHA or EPA. In our case, my son doesn't eat any transfats. Because of all his food allergies, he doesn't eat processed food at all, and never did. He was nursed until age 2, and GF/CF his whole life. (I eliminated it from my diet while nursing with dramatic improvement in his nonstop screaming and apparent abdominal pain, vomiting, and choking...his older brother paved the way and what took us years to figure out with lots of suffering on his brother's part, was quickly identified withing the 1st 2 weeks of life). Pretty healthy in that sense - fresh fruit and vegies etc. The high doses of omega we are using are superphysiologic. Something is causing the deficiency - so an enzyme that's not working, or transporter not doing its thing, that signals are getting scrambled from the brain to the mouth or limbs. There isn't any other condition that presents with this scenario of symptoms. Many of these kids seem to have allergies as well, so an immunologic or inflammatory cause is also a possibility. For example inflammation/oxidative stress could turn off or inactivate a key enzyme in fatty acid metabolism. Many possibilities. The membranes of the red cell reflect the membranes of brain cells - there's been plenty of studies showing abnormalities in red cell membrane fatty acid make-up and disorders like schizophrenia, and there's data in dyslexia and other developmental disorders as well. Fatty acids are key components in cell membranes. And if the membrane make-up is scrambled, so is the message being transmitted. So the red cell is potentially a window to the brain as far as fatty acid research. Although this has been studied in other disorders, there's nothing out there on apraxia. - Re: [ ] Apraxia research - contact me if interested On Jun 4, 2006, at 9:48 PM, wrote: > Many of you have also read my theory that for those kids responding as > remarkably as my son to omega supplements, I suspect some fatty acid > metabolism disorder is involved. I have several collaborators - one an > expert in fatty acid metabolism - but again past work was in sickle > cell, > and another looking at oxidative stress (who already has data > collected on > kids with autism, who is interested in the apraxia question). To > start, I'm > wanting to look at amino acids, cytokines & fatty acids in the red > blood > cell (reflects brain biology) and within the plasma, and also study > the > Glutathione pathway - which is disrupted in many conditions, including > autism. Glutathione in your cells is one of the pathways that keeps > all the > inflammation/oxidative stress in balance. If it is deficient, then > cells are > susceptible to oxidants and toxins without defense. I'm really > oversimplifying things here. Hi , I just wanted to make a comment off list regarding the direction of your research. My older daughter currently takes EFAs as do I. She takes it for OCD symptoms, and it also makes her less moody (she's 13). I also take it. I've become a real believer in the whole concept (and I'm a skeptical person by nature). I have a son with Tourette syndrome and sensory issues as well as an auditory processing disorder. We are working to find some type of EFA that he will tolerate as it has been shown to help with the sensory issues and possibly the tics. (I'm also working to get my daughter who we suspect has Apraxia taking the EFA). I give all that info to get to my point which is that I've done a lot of research on EFA, and I am not thinking that certain subgroups of people have some type of metabolic problem that causes them to need more EFA, as much as I am convinced that all of us *need* more EFA than we are getting. (Thus the word *essential*). What I've come across in my research is that due to changes in how food is produced and marketed, foods that used to be relatively high in EFA are not any more. Therefore many, many people are deficient in EFAs and are reacting to that deficiency in a variety of ways. Anyway, I find all this research fascinating. Jeanne jwestpha@... NBCT - Exceptional Needs (2000) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2006 Report Share Posted June 5, 2006 this is just fascinating! I too as you may or may not know (it's many times in the archives) have compared today's apraxia to the early stages of what Lorenzo went through. I watched in horror that movie and called Dr. Marilyn Agin during it to ask ... " If you have delayed myelinization would that create apraxia like issues? " And she said " yes " It's why we had Dr. Hugo Moser -the doctor behind Lorenzo's Oil who led the trials as our key note speaker at The First Apraxia Conference hosted by CHERAB. He was so excited about what we were seeing as a group and said pounding his hand on the podium. " Don't wait to start research like I did. Start it now! " Well easier said then done. And now...years and years later after being kicked off the other grouplist for my beliefs here you are to help validate what I've known and have tried to share with others for years! Would the fatty acid issue have anything to do with the myelin too? I once asked Dr. Xue Ming about why we are seeing the surges and regressions so quickly on EFAs and she told me there are things that start to happen quickly even prior to myelinization that would explain that. I'm sure with the metabolic issues you are talking about that would also show the rapid changes. All I can say is THANK YOU DR. CLAUDIA MORRIS! You are one Super Mom that's for sure! ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2006 Report Share Posted June 5, 2006 At first (last year) I thought this was a delayed myelination issue. Many " late bloomers " are just late myelinators, so delays in speech and motor milestones. But once the myelination begins to mature, these kids take off. When we first started ph on cod liver oil, that is exactly what I thought. Ahhh, really just a late bloomer, maybe I didn't need to be so worried after all. Then we stopped the CLO and he regressed very quickly. But myelination takes time. It can quickly be destroyed, but takes weeks to restore. So once we started seeing the rapid turn around on and off fish oil (ie just 1-3 days) this does not suggest myelination problems. But still there are many things that could cause delayed messages along the myelin. I'm resending comments from a fatty acid research expert from Pittsburgh after discussing this issue with him - below. I figured someone who has spent their life studying these pathways may be able to make more sense of this. ---------------------------------------------------------------------------- ------------ The clinical improvement seen in your sone with the omega fatty acid supplement is striking. Most parents witnessing a placebo effect will report an initial improvement that is not sustained. You, however, make a very compelling story for the supplement overcoming a metabolic block in your son. Such dramatic responses to supraphysiologic doses of something are most suggestive of a transport defect (as in primary carnitine deficiency, etc) or a cofactor deficiency (such as biopterin defects in PKU). Alternatively, you may be overcoming some biosynthetic block through activation of a secondary pathway. It's unlikely to be a degradative defect since one would expect worsening with excess supplementation of the non-metabolizable compound. ---------------------------------------------------------- I totally agree with your re: Lorenzo's oil. I finally rented it as you suggested, and did watch in horror as I saw the similarities in symptoms early on and what we see in apraxia. But what is interesting is the quick reversibility of the some of the apraxic symptoms - as opposed to the degeneration from brain damage seen in Lorenzo's condition. It also confirms my belief that disruption of normal fatty acid metabolism can create the consolation of symptoms we see in our kids. Now we just have to figure out what the derangement is to figure out what the best supplement is to reverse it.In apraxia it seems the regression off fish oil is quickly reversed, like turning on or off a switch. So not brain damage, just a switch of some sort not working. Omega 3 seems to help overcome it, but is not the cure. Maybe there is a total fix? In the meantime, lots of OT and PT! [ ] Re: Apraxia research - contact me if interested this is just fascinating! I too as you may or may not know (it's many times in the archives) have compared today's apraxia to the early stages of what Lorenzo went through. I watched in horror that movie and called Dr. Marilyn Agin during it to ask ... " If you have delayed myelinization would that create apraxia like issues? " And she said " yes " It's why we had Dr. Hugo Moser -the doctor behind Lorenzo's Oil who led the trials as our key note speaker at The First Apraxia Conference hosted by CHERAB. He was so excited about what we were seeing as a group and said pounding his hand on the podium. " Don't wait to start research like I did. Start it now! " Well easier said then done. And now...years and years later after being kicked off the other grouplist for my beliefs here you are to help validate what I've known and have tried to share with others for years! Would the fatty acid issue have anything to do with the myelin too? I once asked Dr. Xue Ming about why we are seeing the surges and regressions so quickly on EFAs and she told me there are things that start to happen quickly even prior to myelinization that would explain that. I'm sure with the metabolic issues you are talking about that would also show the rapid changes. All I can say is THANK YOU DR. CLAUDIA MORRIS! You are one Super Mom that's for sure! ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2006 Report Share Posted June 5, 2006 OK, Now I'm really fascinated. My husband has a condition called Subacute Combined Degeneration which is a disease of demyelination caused by a B12 deficiency. Now, you've got me wondering if there is any connection with EFAs and my daughter's difficulties (as well as my son's which are beyond the scope of this list, but he has PANDAS). Jeanne On Jun 5, 2006, at 11:52 AM, wrote: > At first (last year) I thought this was a delayed myelination issue. > Many > " late bloomers " are just late myelinators, so delays in speech and > motor > milestones. But once the myelination begins to mature, these kids > take off. > When we first started ph on cod liver oil, that is exactly what I > thought. Ahhh, really just a late bloomer, maybe I didn't need to be > so > worried after all. Then we stopped the CLO and he regressed very > quickly. > But myelination takes time. It can quickly be destroyed, but takes > weeks to > restore. So once we started seeing the rapid turn around on and off > fish oil > (ie just 1-3 days) this does not suggest myelination problems. But > still > there are many things that could cause delayed messages along the > myelin. > > I'm resending comments from a fatty acid research expert from > Pittsburgh > after discussing this issue with him - below. I figured someone who > has > spent their life studying these pathways may be able to make more > sense of > this. > > ----------------------------------------------------------------------- > ----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2006 Report Share Posted June 5, 2006 Hi , I fit your profile. I have the apraxic twins who will be turning 6 in August. They have no other complexities. They seem to really be coming along thanks to this great PROMPT SPL. Anyway, I'm replying to your email since I will be in California (LA) from August 8th - August 23. I can be reached at 410-788-2446. Please contact me at your convenience. I know SF is far but maybe something can be arranged. You're such a God send to me and I'm sure to many people with children like ours. God bless, <claudiamorris@...> wrote: Many of you have probably figured out that I have a medical background. (But I've been posting as a mom, and not as an MD - since my medical background has not helped me much here - except to know how to fight the system). I am a pediatrician in the bay area specializing in pediatric emergency medicine, but also am involved in research mainly in asthma, sickle cell disease, thalassemia and various forms of pulmonary hypertension. For those who haven't read my posts, I found this site because I have a globally apraxic, adorable nearly 3 year old son with SID and low tone, and found very few answers with regards to my son's condition despite my medical background. My boy has made amazing progress with the help of high dose fish oil (thank God for The Late Talker), and quickly regresses off of them. Some of my clinical trials have focused on using a dietary supplement (arginine) to improve pain, pulmonary complications etc in patients with sickle cell disease, and I am the research director for our pediatric emergency medicine fellowship - which basically means I mentor young physicians through a research project. Since I study amino acids and markers of inflammation, much of what I've been reading on omega supplements has been fascinating - as some of the possible mechanisms involved fall into my area of expertise...just never studied it in developmental disorders. Anyway I have been talking to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2006 Report Share Posted June 5, 2006 Some Dan doctors have become interested in using the medication actos in children with autism - it appears that actos, if used for at least nine months, can promote remyelination. Jeanne, how have you treated your son's PANDAS? My son also has PANDAS (though not apraxia - my daughter had apraxia). > > > At first (last year) I thought this was a delayed myelination issue. > > Many > > " late bloomers " are just late myelinators, so delays in speech and > > motor > > milestones. But once the myelination begins to mature, these kids > > take off. > > When we first started ph on cod liver oil, that is exactly what I > > thought. Ahhh, really just a late bloomer, maybe I didn't need to be > > so > > worried after all. Then we stopped the CLO and he regressed very > > quickly. > > But myelination takes time. It can quickly be destroyed, but takes > > weeks to > > restore. So once we started seeing the rapid turn around on and off > > fish oil > > (ie just 1-3 days) this does not suggest myelination problems. But > > still > > there are many things that could cause delayed messages along the > > myelin. > > > > I'm resending comments from a fatty acid research expert from > > Pittsburgh > > after discussing this issue with him - below. I figured someone who > > has > > spent their life studying these pathways may be able to make more > > sense of > > this. > > > > ----------------------------------------------------------------------- > > ----- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2006 Report Share Posted June 5, 2006 The fish oil sounds very exciting. My 28 month old son has been diagnosed with apraxia and I am looking into different approaches. I am leary of trying fish oil as we have a history of allergies to fish and shellfish in my family, we haven't had my son tested and he dosn't eat fish. Any alternitives? Also of note, my son was a preemie and had several bleeds in his brain. One of which was in the area of speech and language, so we're pretty sure where the apraxia stems from. Any thoughts? - [ ] Re: Apraxia research - contact me if interested this is just fascinating! I too as you may or may not know (it's many times in the archives) have compared today's apraxia to the early stages of what Lorenzo went through. I watched in horror that movie and called Dr. Marilyn Agin during it to ask ... " If you have delayed myelinization would that create apraxia like issues? " And she said " yes " It's why we had Dr. Hugo Moser -the doctor behind Lorenzo's Oil who led the trials as our key note speaker at The First Apraxia Conference hosted by CHERAB. He was so excited about what we were seeing as a group and said pounding his hand on the podium. " Don't wait to start research like I did. Start it now! " Well easier said then done. And now...years and years later after being kicked off the other grouplist for my beliefs here you are to help validate what I've known and have tried to share with others for years! Would the fatty acid issue have anything to do with the myelin too? I once asked Dr. Xue Ming about why we are seeing the surges and regressions so quickly on EFAs and she told me there are things that start to happen quickly even prior to myelinization that would explain that. I'm sure with the metabolic issues you are talking about that would also show the rapid changes. All I can say is THANK YOU DR. CLAUDIA MORRIS! You are one Super Mom that's for sure! ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2006 Report Share Posted June 5, 2006 I wonder if actos could be used for apraxia too then. > > Some Dan doctors have become interested in using the medication actos > in children with autism - it appears that actos, if used for at least > nine months, can promote remyelination. > > Jeanne, how have you treated your son's PANDAS? My son also has PANDAS > (though not apraxia - my daughter had apraxia). > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2006 Report Share Posted June 6, 2006 Please excuse me for butting in as this is my first time posting here. I was wondering if anyone has suggested trying flax seed oil? It also contains omega-3 fatty acids and is an alternative for people who cannot tolerate fish. > > The fish oil sounds very exciting. My 28 month old son has been diagnosed with apraxia and I am looking into different approaches. I am leary of trying fish oil as we have a history of allergies to fish and shellfish in my family, we haven't had my son tested and he dosn't eat fish. Any alternitives? Also of note, my son was a preemie and had several bleeds in his brain. One of which was in the area of speech and language, so we're pretty sure where the apraxia stems from. > Any thoughts? > - > [ ] Re: Apraxia research - contact me if interested > > > > this is just fascinating! I too as you may or may not know > (it's many times in the archives) have compared today's apraxia to > the early stages of what Lorenzo went through. I watched in horror > that movie and called Dr. Marilyn Agin during it to ask ... " If you > have delayed myelinization would that create apraxia like issues? " > And she said " yes " It's why we had Dr. Hugo Moser -the doctor > behind Lorenzo's Oil who led the trials as our key note speaker at > The First Apraxia Conference hosted by CHERAB. He was so excited > about what we were seeing as a group and said pounding his hand on > the podium. " Don't wait to start research like I did. Start it > now! " Well easier said then done. And now...years and years later > after being kicked off the other grouplist for my beliefs here you > are to help validate what I've known and have tried to share with > others for years! Would the fatty acid issue have anything to do > with the myelin too? I once asked Dr. Xue Ming about why we are > seeing the surges and regressions so quickly on EFAs and she told me > there are things that start to happen quickly even prior to > myelinization that would explain that. I'm sure with the metabolic > issues you are talking about that would also show the rapid changes. > > All I can say is THANK YOU DR. CLAUDIA MORRIS! You are one Super > Mom that's for sure! > > ===== > Quote Link to comment Share on other sites More sharing options...
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