Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 Tara I believe that your concerns are extremely valid. I wish that I had been as observant a parent when my child was your age! I really don't know what to call what many of our kids seem to have.... some call it autistic entrecolitis as a 'coined word' but there really is no official name for the bowel issues that a lot of the moms have discovered. We parents have become experts in Poop! (just what I aspired to become an expert in as a child growing up.... oh well) We watch for diarrhea, constipation, reactions to foods, to chemicals and we work to 'bring down that belly'. Some of us have gotten rid of the 'autistic belly' which seems to be symbolic of gas, distension or constipation (impaction of some sort) via diet, probiotics and supplements. I got rid of it for Mark in the end using coconut kefir water by The Body Ecology Diet after trying just about every- thing else. Diet is key. If you have crohns, then you understand how sensitive the digestive system can be. I think of this as the early stages of 'something else', either crohns, IBS or 'something' that will hurt my child down the road. Perhaps that road is not so far away for Mark as he tested at .9 in sugar levels after a 12 hour fast. This means that he is borderline diabetic. I am not sure right now what further I can do to his diet to reduce his sugar intakes. For now, only distilled water and no juice unless he is suffering constipation and a low carb diet.... My child is now on nuts, meats, berries, vegetables and a few whole grains. No fun foods allowed. Pretty tough for a 13 year old! But now, I must now save him from diabetes. This is a new one.... It's tough, just when I am so close to curing the kids' dyspraxia, something else always seems to crop up to set us back 10 miles! Sorry, I'm a little depressed about this one right now. Feel like a lost soul and my hatred of dyspraxia..... evil dyspraxia.... is renewed. This is the way it is for our sensitive kids. As you have great experience with diet already, I shall not preach. (I could probably ask you the questions!) Approach your son in the same way that you approach yourself: with a keen eye as to what his digestive system can handle and which foods he may react to. Good Luck. I look forward to hearing diet advice from you! I am sure that your are the expert and have a lot to teach us who merely watch our children and wonder what to feed them to get them better.... PT, OT are good items. Playing horsey and crawling on hands and knees is very good for our little ones. I don't know where you live or what the accessiblity is but one of the best exercises for low-tone is horse back riding or hippotherapy. If I had the money or if riding was remotely accessible, that is what I would do for my young child. It works just about every muscle group in the body and the younger we can do that, the better off the child is globally. So.... put that on your list to review down the road. I know that some of the moms on the dyspraxia families group have been able to get hippotherapy covered by insurance. Just the strength, balance, etc. required by riding is great.... imo it does not necessarily need to be the 'therapy'. Jumping on a trampoline also works the body globally and is great for sensory stimulation and feedback for our kids. I often wonder if we can get the tone in the abdominal area strengthened.... would this increase motility in our children's digestive tract? Is possibly the issue that our children have low tone on their 'insides' as well as their outsides? I really suspect this is the case.... Is that why they just cannot seem to digest anything well? Mark's just seems to be getting worse and worse through the years and I just know.... that some 'real' disease is coming up if we don't get this working better for him..... for all of our kids. What is the recipe? Together we must find it. Janice Mother of Mark, 13 [sPAM][ ] Re: Few Questions Do not look at that belly and wonder. Run to a GI. Get the testing listed in the malabsorption folder. Get IGG testing to address hidden and delayed allergies in his diet. It may not solve all of his stuff but he'll sure be in better shape physically and mentally to get the help he needs and he will no longer suffer in ways he cannot communicate to you. If I hear of one more therapist saying food issues are sensory without mentioning addressing allergens I think I might just SCREAM! > > Hi All, > > My son is 31 months and was diagnosed with apraxia last November. He is receiving speech therapy 3x a week and OT 1x a week. The OT has recommended that we get him evaluated by a PT because of low- trunk issues and the non-use of his abdominal muscles. Has anyone had an experience like this with their child? His stomach always seems distended at the end of the day. I am so sensitive to this because I have Crohn's Disease and am very worried that someday he might be diagnosed. > > Also, we have such a hard time with him when it comes to food. His OT mentioned that it could be sensory-related, since he hates to get his hair washed, cut, and nails clipped, among other things. She is recommending that we brush him. This needs to be done every 2 hours or so. Has anyone brushed their child? I am wondering if there are alternatives out there for dealing with his sensory issues. We just started him on the Nordic Naturals Pro EFA this week and have read that some times sensory issues will dissipate with this supplement. Any advice is greatly appreciated. > > I was also wondering if a child can react to fish oil? I feel like ever since we started his supplement he wakes up in the middle of the night and is extremely cranky. My husband feels like this behavior has gone on prior to the supplement. > > Has anyone seen Dr. Layton, a DAN doctor in Towson, MD? > > Thanks so much, everyone. I tend to be a lurker for the most part, but this board has become invaluable to me. After reading all of your posts (and emailing Colleen after one of her posts - thanks again!) I am determined to set up a plan for . We are well on our way. > > Thanks again and have a great weekend! > Tara > > > > __________________________________________________________ > Get the power of Windows + Web with the new Windows Live. > http://www.windowslive.com? ocid=TXT_TAGHM_Wave2_powerofwindows_012008 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 Hi Janice, What is hippotherapy? Sorry if I overlooked it in your post. @...: jscott@...: Sat, 12 Jan 2008 13:26:11 -0800Subject: Re: [ ] Re: Few Questions TaraI believe that your concerns are extremely valid. I wish that I had been as observant a parent when my child was your age!I really don't know what to call what many of our kids seem to have.... some call it autistic entrecolitis as a 'coined word' but there really is no official name for the bowel issues that a lot of the moms have discovered.We parents have become experts in Poop! (just what I aspired to become an expert in as a child growing up.... oh well) We watch for diarrhea, constipation, reactions to foods, to chemicals and we work to 'bring down that belly'.Some of us have gotten rid of the 'autistic belly' which seems to be symbolic of gas, distension or constipation (impaction of some sort) via diet, probiotics and supplements. I got rid of it for Mark in the end using coconut kefir water by The Body Ecology Diet after trying just about every- thing else.Diet is key. If you have crohns, then you understand how sensitive the digestive system can be. I think of this as the early stages of 'something else', either crohns, IBS or 'something' that will hurt my child down the road. Perhaps that road is not so far away for Mark as he tested at .9 in sugar levels after a 12 hour fast. This means that he is borderline diabetic. I am not sure right now what further I can do to his diet to reduce his sugar intakes. For now, only distilled water and no juice unless he is suffering constipation and a low carb diet.... My child is now on nuts, meats, berries, vegetables and a few whole grains. No fun foods allowed. Pretty tough for a 13 year old! But now, I must now save him from diabetes. This is a new one.... It's tough, just when I am so close to curing the kids' dyspraxia, something else always seems to crop up to set us back 10 miles! Sorry, I'm a little depressed about this one right now. Feel like a lost soul and my hatred of dyspraxia..... evil dyspraxia.... is renewed.This is the way it is for our sensitive kids. As you have great experience with diet already, I shall not preach. (I could probably ask you the questions!) Approach your son in the same way that you approach yourself: with a keen eye as to what his digestive system can handle and which foods he may react to.Good Luck. I look forward to hearing diet advice from you! I am sure that your are the expert and have a lot to teach us who merely watch our children and wonder what to feed them to get them better.... PT, OT are good items. Playing horsey and crawling on hands and knees is very good for our little ones. I don't know where you live or what the accessiblity is but one of the best exercises for low-tone is horse back riding or hippotherapy. If I had the money or if riding was remotely accessible, that is what I would do for my young child. It works just about every muscle group in the body and the younger we can do that, the better off the child is globally. So.... put that on your list to review down the road. I know that some of the moms on the dyspraxia families group have been able to get hippotherapy covered by insurance. Just the strength, balance, etc. required by riding is great.... imo it does not necessarily need to be the 'therapy'. Jumping on a trampoline also works the body globally and is great for sensory stimulation and feedback for our kids.I often wonder if we can get the tone in the abdominal area strengthened.... would this increase motility in our children's digestive tract? Is possibly the issue that our children have low tone on their 'insides' as well as their outsides? I really suspect this is the case.... Is that why they just cannot seem to digest anything well? Mark's just seems to be getting worse and worse through the years and I just know.... that some 'real' disease is coming up if we don't get this working better for him..... for all of our kids. What is the recipe? Together we must find it.JaniceMother of Mark, 13----- Original Message ----- From: ilizzy03 Sent: Saturday, January 12, 2008 9:27 AMSubject: [sPAM][ ] Re: Few QuestionsDo not look at that belly and wonder. Run to a GI. Get the testing listed in the malabsorption folder. Get IGG testing to address hidden and delayed allergies in his diet. It may not solve all of his stuff but he'll sure be in better shape physically and mentally to get the help he needs and he will no longer suffer in ways he cannot communicate to you. If I hear of one more therapist saying food issues are sensory without mentioning addressing allergens I think I might just SCREAM!>> Hi All,> > My son is 31 months and was diagnosed with apraxia last November. He is receiving speech therapy 3x a week and OT 1x a week. The OT has recommended that we get him evaluated by a PT because of low-trunk issues and the non-use of his abdominal muscles. Has anyone had an experience like this with their child? His stomach always seems distended at the end of the day. I am so sensitive to this because I have Crohn's Disease and am very worried that someday he might be diagnosed.> > Also, we have such a hard time with him when it comes to food. His OT mentioned that it could be sensory-related, since he hates to get his hair washed, cut, and nails clipped, among other things. She is recommending that we brush him. This needs to be done every 2 hours or so. Has anyone brushed their child? I am wondering if there are alternatives out there for dealing with his sensory issues. We just started him on the Nordic Naturals Pro EFA this week and have read that some times sensory issues will dissipate with this supplement. Any advice is greatly appreciated.> > I was also wondering if a child can react to fish oil? I feel like ever since we started his supplement he wakes up in the middle of the night and is extremely cranky. My husband feels like this behavior has gone on prior to the supplement.> > Has anyone seen Dr. Layton, a DAN doctor in Towson, MD?> > Thanks so much, everyone. I tend to be a lurker for the most part, but this board has become invaluable to me. After reading all of your posts (and emailing Colleen after one of her posts - thanks again!) I am determined to set up a plan for . We are well on our way.> > Thanks again and have a great weekend!> Tara> > > > __________________________________________________________> Get the power of Windows + Web with the new Windows Live.> http://www.windowslive.com?ocid=TXT_TAGHM_Wave2_powerofwindows_012008> > Quote Link to comment Share on other sites More sharing options...
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