Guest guest Posted October 27, 2011 Report Share Posted October 27, 2011 Can't help much but my son has a genetic disorder. I figured out what he had by googling all of his symptoms and reading about each one. Not a process for everyone.... But it worked for me:) Once I found out what I thought he had we went in for testing and the results were positive. Could you investigate syndromes which are similar to Beals? My son has a fairly rare syndrome and to date there are no documented cases of siblings w the same disorder unless one parent has the syndrome. (50% chance then). Tame Sent from my iPhone On Oct 26, 2011, at 5:43 PM, " " <candice_welch85@...> wrote: Hey Everyone, We are still looking for answers into why my son Thaddeus is not yet walking at almost 3 ( he will be 3 in Jan) We have re-looked throught all the results for all the testing he has gone through and still no answers. Beals Syndrome test = Negative Chromosome Testing = 100% normal Enzime Test = Normal. Its very frustrating to get all these great results on test but obviously there is something going on because he is not walking. We are waiting to get in to see the nurologist but that wont be till about Mar i think. I dont think they will have any answers eaither so is it a Fluke or what. Thaddeus had Joint contractures when he was born 8 weeks early. all of them have now resolved and we are just dealing with walking and Scoliosis. We are planing to Add to our family but my hubby would like to atleast have a idea what to expect with #2. Does anyone have anything similar going on with thier child??? Thanks Mommy to Thaddeus ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2011 Report Share Posted October 27, 2011 How are his muscles? HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of Sent: Wednesday, October 26, 2011 4:43 PMinfantile scoliosis treatment Subject: Confusing Genetics Hey Everyone, We are still looking for answers into why my son Thaddeus is not yet walking at almost 3 ( he will be 3 in Jan) We have re-looked throught all the results for all the testing he has gone through and still no answers. Beals Syndrome test = NegativeChromosome Testing = 100% normalEnzime Test = Normal. Its very frustrating to get all these great results on test but obviously there is something going on because he is not walking. We are waiting to get in to see the nurologist but that wont be till about Mar i think. I dont think they will have any answers eaither so is it a Fluke or what. Thaddeus had Joint contractures when he was born 8 weeks early. all of them have now resolved and we are just dealing with walking and Scoliosis. We are planing to Add to our family but my hubby would like to atleast have a idea what to expect with #2. Does anyone have anything similar going on with thier child???ThanksMommy to Thaddeus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2011 Report Share Posted October 28, 2011 , My daughter will be four in Jan and just started crawling; however, she does have a lot of medical issues, including a partial chromosome deletion. Her initial genetics test was normal, but after the scoli diaganosis she had a CGH Array which revealed the chromosome disorder. Has your son had that particular test? mom to Audrey, casts and brace from SLC > > Hey Everyone, > > We are still looking for answers into why my son Thaddeus is not yet walking at almost 3 ( he will be 3 in Jan) We have re-looked throught all the results for all the testing he has gone through and still no answers. > Beals Syndrome test = Negative > Chromosome Testing = 100% normal > Enzime Test = Normal. > > Its very frustrating to get all these great results on test but obviously there is something going on because he is not walking. We are waiting to get in to see the nurologist but that wont be till about Mar i think. I dont think they will have any answers eaither so is it a Fluke or what. Thaddeus had Joint contractures when he was born 8 weeks early. all of them have now resolved and we are just dealing with walking and Scoliosis. We are planing to Add to our family but my hubby would like to atleast have a idea what to expect with #2. > > Does anyone have anything similar going on with thier child??? > > > Thanks > > Mommy to Thaddeus > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2011 Report Share Posted October 30, 2011 Hi , We have been busy with health care treatments recently and I have been without my own computer since August, I just got this one up and running two days ago, so I am really behind on posts. I read them all so I started back when my computer quit in August (I had only had it for a month or so) and I just got to your post so I am sorry if I missed something and I still have to read the others. I was wondering if it could be a problem with his ears? Or some other proprioceptive disorder? If I brainstorm any other hair-brained ideas I'll send them along. Shauna L > > Hey Everyone, > > We are still looking for answers into why my son Thaddeus is not yet walking at almost 3 ( he will be 3 in Jan) We have re-looked throught all the results for all the testing he has gone through and still no answers. > Beals Syndrome test = Negative > Chromosome Testing = 100% normal > Enzime Test = Normal. > > Its very frustrating to get all these great results on test but obviously there is something going on because he is not walking. We are waiting to get in to see the nurologist but that wont be till about Mar i think. I dont think they will have any answers eaither so is it a Fluke or what. Thaddeus had Joint contractures when he was born 8 weeks early. all of them have now resolved and we are just dealing with walking and Scoliosis. We are planing to Add to our family but my hubby would like to atleast have a idea what to expect with #2. > > Does anyone have anything similar going on with thier child??? > > > Thanks > > Mommy to Thaddeus > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2011 Report Share Posted October 30, 2011 Hi , I have been in contact with someone from the Beals blog, who said that Dr Beals gave her child a clinical diagnosis of Beals Syndrome even though the test was negative. I can get her email address to you if you want... Louise > > > > Hey Everyone, > > > > We are still looking for answers into why my son Thaddeus is not yet walking at almost 3 ( he will be 3 in Jan) We have re-looked throught all the results for all the testing he has gone through and still no answers. > > Beals Syndrome test = Negative > > Chromosome Testing = 100% normal > > Enzime Test = Normal. > > > > Its very frustrating to get all these great results on test but obviously there is something going on because he is not walking. We are waiting to get in to see the nurologist but that wont be till about Mar i think. I dont think they will have any answers eaither so is it a Fluke or what. Thaddeus had Joint contractures when he was born 8 weeks early. all of them have now resolved and we are just dealing with walking and Scoliosis. We are planing to Add to our family but my hubby would like to atleast have a idea what to expect with #2. > > > > Does anyone have anything similar going on with thier child??? > > > > > > Thanks > > > > Mommy to Thaddeus > > > Quote Link to comment Share on other sites More sharing options...
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