Guest guest Posted June 6, 2005 Report Share Posted June 6, 2005 Welcome to the group . The only new surgical spinal intervention I know of is the Vertical Expandable Prosthetic Titanium Rib, or VEPTR. There is info at www.veptr.com. Perhaps some of the other parents of children with AMC will respond. Shellienichabrad <nichabrad@...> wrote: Hi, I am new here and wanted to introduce myself. I am . My son is . He is 7 years old and has had 2 back surgeries for scoliosis. He also has Arthrogryposis and is in a wheelchair. Anyway, when he was born his back was 33 degrees in the center with a compensatory curve at his neck of 25 degrees. By age 2 his curves were 77 center and 44 neck. He had an anterior and posterior spinal fusion using his ribs as bone grafting on March 1, 2000. He had also had a detethering of the spinal cord in early 99 but it did not help. His spine was reduced to 56 degrees in the center but over the course of the last 5 years has still made a slow progression. It is now 72 once again and we're looking at yet another surgery. I am very upset as the first surgery was HORRIBLE and bracing doesn't work with his curve because it is rigid. Surgery seems to be the only option.We are in Atlanta Georgia so he is getting help through the Emory Spine Clinic at Children's Healthcare of Atlanta. They are some of the best doctors in the world here. I trust them but don't want to see him going through a fusion with rods at 7 years old. If there is anyone out there that might be able to help ease my mind or has ideas or options they know of that aren't so invasive, I'd really appreciate it. His next followup visit is Dec 1, 2005. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 Hi, Thanks for writing Dana. My son was born Aug. '04. so he's 2.6 yrs old. He is in Early Intervention right now. He had his intake appt. yesterday. We have moved so he had to transfer to different school. He doesnt talk. There are things my husband and I can understand that he does and he knows a few signs like more and for me (EI taught him those). When he wants something to drink he coughs . He understands very well it seems like he knows what we say. Its just that he's not speaking. So I deffinetly understand what you say about it being hard to understand. hope to hear back, -- In , " danacrumb " <danacrumb@...> wrote: > > > hi, our son is two as well and is not talking either, he has 6-8 words, > he says down and no which he says for everyting even if he wants > something and ssssss for horse, he has a couple others but these are the > ones he uses most. he gets confused with sign language so it makes it > hard to know what he wants half the time......looking forward to getting > to kow you better.... > > Dana > > > > > Hi Everyone, > > I am new to the group I have a 2 yr old boy who still isnt talking. He > > knows some signs like: more and drink. I am hoping this group can help > > us a little more. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2007 Report Share Posted January 21, 2007 he has got ASD. now on supllements B12 and DMSA suppossitories. he is on NAC,L carnosine,Pyridoxine (Vit B6),iron,calcium,maggesium,caprylic acid,folinic acid,brainchilds mega minerals,supernu thera by Kirkmans,epsom salt baths,educed L glutathione lotion,Mgso4 cream,methyly B12 sub cut injections on alternat days,DMSA supps every 11 days. anyhthing we missed??????? also on Gluten free ,dairy freee,soya free diet _________________________________________________________________ Get Hotmail, News, Sport and Entertainment from MSN on your mobile. http://www.msn.txt4content.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2007 Report Share Posted January 21, 2007 There is two dozen other supplements and interventions that anyone here could give you in a matter of seconds, it really all depends on each individual child. how is your son doing so far, what have been the best things so far, are there any suspect that may not be doing anything or doing negative things etc? what is his history? lab results? out of the usual 'chart toppers' you don't mention any GI stuff, like enzymes (Huston) or probiotics. how about antivirals? immune modulators? ldn? transfer factor? homeopathy? herbal supplements? fish oils? .... I could go on on and on, it really is all very individual... Natasa > > > > he has got ASD. > now on supllements B12 and DMSA suppossitories. > he is on NAC,L carnosine,Pyridoxine (Vit B6),iron,calcium,maggesium,caprylic > acid,folinic acid,brainchilds mega minerals,supernu thera by Kirkmans,epsom > salt baths,educed L glutathione lotion,Mgso4 cream,methyly B12 sub cut > injections on alternat days,DMSA supps every 11 days. > anyhthing we missed??????? > also on Gluten free ,dairy freee,soya free diet > > _________________________________________________________________ > Get Hotmail, News, Sport and Entertainment from MSN on your mobile. > http://www.msn.txt4content.com/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2007 Report Share Posted January 21, 2007 Dear Gobika, I wondered if you could say something about what made you decide to use these particular supplements? It's usually recommended to start things off slowly, one at a time at low doses. What was your child like before you started and has he improved/regressed at any time on them? Also whose protocol are you using with the DMSA and how often are you using it and at what doses? I'm not asking these questions to be awkward, but because no-one will be able to reply other than very generally unless they understand a lot more. Best wishes, Margaret > > > > he has got ASD. > now on supllements B12 and DMSA suppossitories. > he is on NAC,L carnosine,Pyridoxine (Vit B6),iron,calcium,maggesium,caprylic > acid,folinic acid,brainchilds mega minerals,supernu thera by Kirkmans,epsom > salt baths,educed L glutathione lotion,Mgso4 cream,methyly B12 sub cut > injections on alternat days,DMSA supps every 11 days. > anyhthing we missed??????? > also on Gluten free ,dairy freee,soya free diet > > _________________________________________________________________ > Get Hotmail, News, Sport and Entertainment from MSN on your mobile. > http://www.msn.txt4content.com/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2007 Report Share Posted January 22, 2007 Wow Gobika, you seem to have alot going on there with your son. Would love to know more about him, why you are doing some of the things you are doing, what is helping, what improvements have you seen, what has not helped, do you have a DAN or not, etc, etc, etc. Oh, and my special interest - What is his gut like in all the gory details!!! Btw, WELCOME !!! Nikki X > > > > he has got ASD. > now on supllements B12 and DMSA suppossitories. > he is on NAC,L carnosine,Pyridoxine (Vit B6),iron,calcium,maggesium,caprylic > acid,folinic acid,brainchilds mega minerals,supernu thera by Kirkmans,epsom > salt baths,educed L glutathione lotion,Mgso4 cream,methyly B12 sub cut > injections on alternat days,DMSA supps every 11 days. > anyhthing we missed??????? > also on Gluten free ,dairy freee,soya free diet > > _________________________________________________________________ > Get Hotmail, News, Sport and Entertainment from MSN on your mobile. > http://www.msn.txt4content.com/ > Quote Link to comment Share on other sites More sharing options...
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