Guest guest Posted December 26, 2006 Report Share Posted December 26, 2006 You're absolutely right and with your medical background you know a heck of a lot more than us. But, and I realize the number of CAL spots we're all talking about doesn't mesh with neurofibromatosis, but if there are so many of us with kids with the CAL spots, what is the possibility that we are inadvertently discovering a similarity that could add up to a " new " syndrome? Our kids have so much more in common with each other - the verbal/oral apraxia, sensory integration, hypotonia, and now CAL spots - isn't it a bit coincidental? I know that our kids have varying degrees of each of these " symptoms, " but so do kids with other types of syndromes and conditions, just as there are many symptoms of other conditions that kids don't have yet are diagnosed with the syndrome or condition (OK, very poor grammar but you catch my drift). There has yet to be a name for what our kids have - don't all these similarities warrant some sort of look by the medical profession?? And, yes, I am very familiar with Mongolian spots and stork bites - both fade with time. CALs don't and that's what is making this very interesting - not worrisome but interesting in that it could be one more thing that might put a name to all of this. Once it has a name, maybe the medical profession might get even more interested and do research so that we all, and those in the future, can have some better idea of how to treat, what type of prognosis there is for our kids, etc. That has been the most frustrating thing many of us deal with in our situations - what does the future hold for my son and your children? We've heard from some parents who have gone before us - what if this current group online can answer some more questions for those that will come after us? Sherry " claudia.morris " <claudia.morris@...> wrote: > Hi Everyone, > > I normally just read posts on this site, but found it > interesting that other apraxic children also had > birthmarks. My daughter has 2 large birthmarks on her > back from birth. Her pediatrician has always kept an > eye on them, but told us not to be concerned. When > she was seen by a neurologist at 12 months he also > mentioned her birthmarks, but did not state any > concerns. She is currently undergoing speech therapy > and awaiting an official diagnosis of apraxia with a > Speech Pathologist, MD in February. > > Reading the posts on this site has been both > interesting and insightful. I just thought I would > chime in on the birthmarks to see if there is any > connection. > > Thanks for listening, > > Kari Minnich > Mom to Emrey (2.8) > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2006 Report Share Posted December 27, 2006 > > Hi Everyone, > > > > I normally just read posts on this site, but found it > > interesting that other apraxic children also had > > birthmarks. My daughter has 2 large birthmarks on her > > back from birth. Her pediatrician has always kept an > > eye on them, but told us not to be concerned. When > > she was seen by a neurologist at 12 months he also > > mentioned her birthmarks, but did not state any > > concerns. She is currently undergoing speech therapy > > and awaiting an official diagnosis of apraxia with a > > Speech Pathologist, MD in February. > > > > Reading the posts on this site has been both > > interesting and insightful. I just thought I would > > chime in on the birthmarks to see if there is any > > connection. > > > > Thanks for listening, > > > > Kari Minnich > > Mom to Emrey (2.8) > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2006 Report Share Posted December 27, 2006 Excellent that he is improving. It is true that maternal nutrition can affect generations. I don't think the nutritional deficiencies in my son are the result of diet however. I suspect that this really it a SYNDROME...and someday we will understand why these children have an increased requirement for antioxidants...whether its malabsorption due to gut inflammation/allergy, increased oxidative stress, and abnormal enzyme(s) in fatty acid processing or abnormal transport of vitamin E into key organs like brain...or a combo of the above (most likely). In the meantime we have said goodbye and many grateful thanks to our ST (who made the apraxia diagnosis in the first place)...and done with OT as well. What will I do with all that extra time??? We have surpassed " normal " and are hitting above average in some catagories in recent testing prior to ending services (like visual- motor!!!!...an area he had so much difficulty early on...and tested in the 99th percentile in sentence structure!!!! We laughed about this with our ST - an apraxic child scoring in the 99th %). We have seen exponential improvement in all areas since we started the vitamin E less than 6 months ago. Sentences are getting more mature/complex, and nearly 100% intelligible. He is really quite sassy, has a lot to say, and is a bit of a handful in the way 3 year olds should be. I love it! This is really a happier outcome than I ever imagined possible. I will be spending more time focusing on getting a grant together looking at a trial of omega 3/vit E in apraxia and apraxic/PDD children...so everyone will probably hear less from me in the near future. The best way for me to spend my (limited) time is to bring some science to all of this - and even a small pilot study will increase apraxia awareness. When there are zero clinical trials...even one small one is a huge step in the right direction. But I owe alot of thanks to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2006 Report Share Posted December 27, 2006 > > Hi Everyone, > > > > I normally just read posts on this site, but found it > > interesting that other apraxic children also had > > birthmarks. My daughter has 2 large birthmarks on her > > back from birth. Her pediatrician has always kept an > > eye on them, but told us not to be concerned. When > > she was seen by a neurologist at 12 months he also > > mentioned her birthmarks, but did not state any > > concerns. She is currently undergoing speech therapy > > and awaiting an official diagnosis of apraxia with a > > Speech Pathologist, MD in February. > > > > Reading the posts on this site has been both > > interesting and insightful. I just thought I would > > chime in on the birthmarks to see if there is any > > connection. > > > > Thanks for listening, > > > > Kari Minnich > > Mom to Emrey (2.8) > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2006 Report Share Posted December 27, 2006 Now I am convinced we are dealing with neurological complications of nutritional deficiencies (at least in my son's case...and others like him)...a treatable condition with supplements are well at OT , I totally agree with these assessment! My situation is a little different in that my son is adopted as a newborn. His birthmother was 17 years old and hid the pregnancy from her parents! She never sought pre-natal care until about her 7 month at which time she started to show and told her parents she was going to enter Job America program held in the Dallas/Ft. Worth area. While she was there she was counseled into giving her child up for adoption. I believe that because she hid the pregnancy and was under such duress that my son did not receive the necessary nutrients for proper brain development. He has improved greatly with the combination of ST, OT and EFA, EPA & Vitaimin E! ----------------------------------------- This transmission may contain information that is privileged, confidential, legally privileged, and/or exempt from disclosure under applicable law. If you are not the intended recipient, you are hereby notified that any disclosure, copying, distribution, or use of the information contained herein (including any reliance thereon) is STRICTLY PROHIBITED. Although this transmission and any attachments are believed to be free of any virus or other defect that might affect any computer system into which it is received and opened, it is the responsibility of the recipient to ensure that it is virus free and no responsibility is accepted by JP Chase & Co., its subsidiaries and affiliates, as applicable, for any loss or damage arising in any way from its use. If you received this transmission in error, please immediately contact the sender and destroy the material in its entirety, whether in electronic or hard copy format. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2006 Report Share Posted December 27, 2006 Excellent that he is improving. It is true that maternal nutrition can affect generations. I don't think the nutritional deficiencies in my son are the result of diet however. I suspect that this really it a SYNDROME...and someday we will understand why these children have an increased requirement for antioxidants...whether its malabsorption due to gut inflammation/allergy, increased oxidative stress, and abnormal enzyme(s) in fatty acid processing or abnormal transport of vitamin E into key organs like brain...or a combo of the above (most likely). In the meantime we have said goodbye and many grateful thanks to our ST (who made the apraxia diagnosis in the first place)...and done with OT as well. What will I do with all that extra time??? We have surpassed " normal " and are hitting above average in some catagories in recent testing prior to ending services (like visual- motor!!!!...an area he had so much difficulty early on...and tested in the 99th percentile in sentence structure!!!! We laughed about this with our ST - an apraxic child scoring in the 99th %). We have seen exponential improvement in all areas since we started the vitamin E less than 6 months ago. Sentences are getting more mature/complex, and nearly 100% intelligible. He is really quite sassy, has a lot to say, and is a bit of a handful in the way 3 year olds should be. I love it! This is really a happier outcome than I ever imagined possible. I will be spending more time focusing on getting a grant together looking at a trial of omega 3/vit E in apraxia and apraxic/PDD children...so everyone will probably hear less from me in the near future. The best way for me to spend my (limited) time is to bring some science to all of this - and even a small pilot study will increase apraxia awareness. When there are zero clinical trials...even one small one is a huge step in the right direction. But I owe alot of thanks to Quote Link to comment Share on other sites More sharing options...
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