Guest guest Posted August 13, 2003 Report Share Posted August 13, 2003 Hello everyone As I have said before, my son was just diagnosed with RSS and now I have all these thoughts and questions rolling around in my head. So here goes.. Does anyone have suggestions on the easiest way to find a doc who has experience with RSS? I plan on making some calls today but I am not sure who to call or where to start. I love the current doc we have now but would prefer somone who has delt with RSS before. Also, I noticed many of you here are dealing with some very complicated medical issues and also seeing a doctor in New York. Are you all wealthy or do you get government assistance? LOL The genetisist told us we only need to be concerned about the kidney tumors within the first 5 years and the asymmetry when my son starts to bear weight. Then I read about GI tubes and the hypoglycemia here. What types of complications should we be watching for in the first year? I have called out local school district which will come out weekly and work on various physical things with my son for free. Has anyone else done this and has it helped? I know in Nebraska it is required by law that the schools provide this service for free. I am not sure if that is different elsewhere. Thank you in advance...I am sure I will come up with more questions later but I think this book is long enough for now Blessings, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2003 Report Share Posted August 14, 2003 Beth - Can you tell us which hospital your geneticist is part of? I am concerned that he/she told you that " kidney stones " were what you should be worried about during the first 5 years. According to all of the research I have read, and talked with Dr. Harbison and Stanhope (who have examined more than 300 RSS kids combined), the kidney tumor thing is probably not correct. Has anyone else also had their physician say the kidney tumor rumor is not accurate? I encourage you to call the MAGIC FOundation at 800-3MAGIC3 and at least get their free RSS brochure. THis will have a lot of general information in it that will answer your questions. THen, if you want, for $25 a year you can join -- and there is a lot more information, written by physicians who are very experienced in RSS and SGA children. I will tell you that whatever you are doing is working for our son. For him to be born at 3 1/2 lbs, and at 4 months old already be 9 pounds is really good. So you can pat yourself on the back for that. The biggest risk at this age (if there is no major reflux) is hypoglycemia and the spilling of ketones. You can read prior emails on this listserve for some info, and then again, MAGIC has complete descriptions and advice for this written by physicians. Congratulations on the birth of your son! > Hello everyone As I have said before, my son was just diagnosed > with RSS and now I have all these thoughts and questions rolling > around in my head. So here goes.. > > Does anyone have suggestions on the easiest way to find a doc who has > experience with RSS? I plan on making some calls today but I am not > sure who to call or where to start. I love the current doc we have > now but would prefer somone who has delt with RSS before. > > Also, I noticed many of you here are dealing with some very > complicated medical issues and also seeing a doctor in New York. Are > you all wealthy or do you get government assistance? LOL > > The genetisist told us we only need to be concerned about the kidney > tumors within the first 5 years and the asymmetry when my son starts > to bear weight. Then I read about GI tubes and the hypoglycemia > here. What types of complications should we be watching for in the > first year? > > I have called out local school district which will come out weekly > and work on various physical things with my son for free. Has anyone > else done this and has it helped? I know in Nebraska it is required > by law that the schools provide this service for free. I am not sure > if that is different elsewhere. > > Thank you in advance...I am sure I will come up with more questions > later but I think this book is long enough for now > Blessings, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2003 Report Share Posted August 14, 2003 I am not sure if all of this e-mail was dierected at me or not...but out genetisist said to have ultrasounds every six months to check for the Wilms tumors aka kidney tumors. He said it was fairly common within the first 5 years of life. We went through Boys Town Pediatrics here in Omaha. I joined the Magic foundation yesterday but have still not obtained access to their members website. He does have reflux which I am gonna bring up to the doctor next time we go in. The doc diagnosed this very early on but said it would go away. I now know this is not the case with RSS. I am also gonna bring up the hypoglycemia because he does get night sweats. Really they are anytime he sleeps for more than 2 hours. Do they test for that with a blood draw? I will have to check out the info on the keytones since I am not familiar with that at all. I wanted to say thank you to everyone who has replied. You have all been a big help already. I went and looked at some of the pics on the list website and wow there are a lot of cuties out there! I went and added my guy...Keigan. Thanks again Blessings, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 I'm new to this, too, and I don't have an answer for the calcium question. We just give our 7 year old one he can swallow. I've been making the nut yogut recipe off of the pecanbread site, and using that in recipes. Hope this helps-- 3 wks on SCD for son with mild autism/severe gastrointestinal issues > >Reply-To: pecanbread >To: pecanbread >Subject: Newbie questions >Date: Wed, 15 Feb 2006 21:31:03 -0000 > >I have been eagerly reading everything I can get my hands on, as we >are preparing to do SCD with a family of 6! > >I have a couple of questions that I am not finding asnwer to. I >apologize if I have overlooked them. > >1. Is raw, unpasteurized clover honey OK to use? > >2. My autistic 2 year old has been casein free only (we hadn't got to >the gluten before I found SCD) about a month and we have seen slight >improvement. I was wondering if anyone had been able to eventually add >the yogurt or dairy to their autistic child? If not, what other >recommendable calcium alternatives do I have? > >3. What, if anything can I use in place of the yoghurt in recipes, >since soy or rice milk are no longer alternatives? > >Thank you so much, >Laurie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 I'm new to this, too, and I don't have an answer for the calcium question. We just give our 7 year old one he can swallow. I've been making the nut yogut recipe off of the pecanbread site, and using that in recipes. Hope this helps-- 3 wks on SCD for son with mild autism/severe gastrointestinal issues > >Reply-To: pecanbread >To: pecanbread >Subject: Newbie questions >Date: Wed, 15 Feb 2006 21:31:03 -0000 > >I have been eagerly reading everything I can get my hands on, as we >are preparing to do SCD with a family of 6! > >I have a couple of questions that I am not finding asnwer to. I >apologize if I have overlooked them. > >1. Is raw, unpasteurized clover honey OK to use? > >2. My autistic 2 year old has been casein free only (we hadn't got to >the gluten before I found SCD) about a month and we have seen slight >improvement. I was wondering if anyone had been able to eventually add >the yogurt or dairy to their autistic child? If not, what other >recommendable calcium alternatives do I have? > >3. What, if anything can I use in place of the yoghurt in recipes, >since soy or rice milk are no longer alternatives? > >Thank you so much, >Laurie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 I'm new to this, too, and I don't have an answer for the calcium question. We just give our 7 year old one he can swallow. I've been making the nut yogut recipe off of the pecanbread site, and using that in recipes. Hope this helps-- 3 wks on SCD for son with mild autism/severe gastrointestinal issues > >Reply-To: pecanbread >To: pecanbread >Subject: Newbie questions >Date: Wed, 15 Feb 2006 21:31:03 -0000 > >I have been eagerly reading everything I can get my hands on, as we >are preparing to do SCD with a family of 6! > >I have a couple of questions that I am not finding asnwer to. I >apologize if I have overlooked them. > >1. Is raw, unpasteurized clover honey OK to use? > >2. My autistic 2 year old has been casein free only (we hadn't got to >the gluten before I found SCD) about a month and we have seen slight >improvement. I was wondering if anyone had been able to eventually add >the yogurt or dairy to their autistic child? If not, what other >recommendable calcium alternatives do I have? > >3. What, if anything can I use in place of the yoghurt in recipes, >since soy or rice milk are no longer alternatives? > >Thank you so much, >Laurie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Kirkman makes a calcium powder and since it is a mineral, we were told that you can cook or bake with it, so we make SCD compliant brownies with it. Super easy. > > I'm new to this, too, and I don't have an answer for the calcium question. > We just give our 7 year old one he can swallow. I've been making the nut > yogut recipe off of the pecanbread site, and using that in recipes. > Hope this helps-- > > 3 wks on SCD for son with mild autism/severe gastrointestinal issues > > > >From: " Laurie " > >Reply-To: pecanbread > >To: pecanbread > >Subject: Newbie questions > >Date: Wed, 15 Feb 2006 21:31:03 -0000 > > > >I have been eagerly reading everything I can get my hands on, as we > >are preparing to do SCD with a family of 6! > > > >I have a couple of questions that I am not finding asnwer to. I > >apologize if I have overlooked them. > > > >1. Is raw, unpasteurized clover honey OK to use? > > > >2. My autistic 2 year old has been casein free only (we hadn't got to > >the gluten before I found SCD) about a month and we have seen slight > >improvement. I was wondering if anyone had been able to eventually add > >the yogurt or dairy to their autistic child? If not, what other > >recommendable calcium alternatives do I have? > > > >3. What, if anything can I use in place of the yoghurt in recipes, > >since soy or rice milk are no longer alternatives? > > > >Thank you so much, > >Laurie > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Kirkman makes a calcium powder and since it is a mineral, we were told that you can cook or bake with it, so we make SCD compliant brownies with it. Super easy. > > I'm new to this, too, and I don't have an answer for the calcium question. > We just give our 7 year old one he can swallow. I've been making the nut > yogut recipe off of the pecanbread site, and using that in recipes. > Hope this helps-- > > 3 wks on SCD for son with mild autism/severe gastrointestinal issues > > > >From: " Laurie " > >Reply-To: pecanbread > >To: pecanbread > >Subject: Newbie questions > >Date: Wed, 15 Feb 2006 21:31:03 -0000 > > > >I have been eagerly reading everything I can get my hands on, as we > >are preparing to do SCD with a family of 6! > > > >I have a couple of questions that I am not finding asnwer to. I > >apologize if I have overlooked them. > > > >1. Is raw, unpasteurized clover honey OK to use? > > > >2. My autistic 2 year old has been casein free only (we hadn't got to > >the gluten before I found SCD) about a month and we have seen slight > >improvement. I was wondering if anyone had been able to eventually add > >the yogurt or dairy to their autistic child? If not, what other > >recommendable calcium alternatives do I have? > > > >3. What, if anything can I use in place of the yoghurt in recipes, > >since soy or rice milk are no longer alternatives? > > > >Thank you so much, > >Laurie > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Kirkman makes a Calcium powder and I believe unless corrected that you can bake with minerals. It's expensive, but goes a long way. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Kirkman makes a Calcium powder and I believe unless corrected that you can bake with minerals. It's expensive, but goes a long way. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Kirkman makes a Calcium powder and I believe unless corrected that you can bake with minerals. It's expensive, but goes a long way. Quote Link to comment Share on other sites More sharing options...
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