... via del ... problema e la ... PEG, ha ... nello ... molto ... 27kg. un ... My son Mason had a half fundoplication done at 6 months in addition to a g-tube...
Kathy, our son Ben (12) had the Nissan procedure done and G-tube inserted about 4 yrs ago. He can now keep food down and get the nutrition his slim figure...
Hi All, I just saw this and thought I would post it in case it is of interest to anyone...sorry if it has been posted before. Kathy Jones Slain brain cells...
mis ery
medmisery@...
Jan 4, 2007 2:15 am
890
Very interesting Kathy Thanks for sharing Shazza mum to Jarod 8 ... From: mis ery To: atr-x@yahoogroups.com Sent: Thursday, January 04, 2007 12:39 PM Subject:...
Dr Gibbons: I have been reading some articles written by you and others and realizing that I can't understand all that is in them, I would like to ask you...
mis ery
medmisery@...
Jan 4, 2007 3:56 am
892
Its been a long time since I reviewed the messages. Both of my boys were in the hospital with RSV. Getting the boys home before the holidays was a wonderful...
My son is now 11 years old.He is very mobile, having learned to walk at age 2. He has a lot of behaviour problems which makes family life hard.He has no speech...
Amanda, Welcome to our family support community. My name is David and I have two sons, ages 11 & 13, affected by this disorder. I know there are several boys...
Hi, I am Liam's Mum. He is 16 and sounds quite like your son as a lot of
the children on here don't seem to be as mobile as he is. Liam will do
basic sign...
Hi, We live in London. Our son Jasper will be 7 in March. He has not yet learned to walk, although we are hopeful as he enjoys standing and has recently...
Kathy, it will depend on how tight they make the Nissen which will depend on how bad his reflux is. If he enjoys eating and if he isn't aspirating (getting...
Kathy, My oldest son, Bear, had a Nissan done when he was 10 mths old. For him, it worked perfectly for several years. He can still manage to defeat the...
Hi, this is Jack's mum. We live in Cheltenham, Gloucestershire.Jack is 10 and was diagnosed when he was 4. My 3 other daughters are all carriers of atrx. Jack...
Yvonne, Welcome to our community. BTW, do you know a good internet sight that provides information on the use of Makaton sign language? Both my boys are...
Hi - my name is Julie, I also have a brother with ATRX, he is 32. I was adopted, so the gene didn't pass to me. We live in Michigan, USA. I'd also love to hear...
... USA. ... again ... with ... use ... walk at ... uses ... was ... not ... condition ... Hi Julie. My brother is doing fine at the moment. He can walk ...
Thank you for your kind messages.I also have a daughter who is 7 years old however we do not know yet if she is a carrier of Atrx. We chose not to find out...
below is a link to a web site we found for makaton signs http://www.bbc.co.uk/cbeebies/somethingspecial/ hope this is of help to you regards mike, donna and...
Hello all and welcome to new members. I finally was able to view the photos of the group and they are all so adorable!! I found it interesting that my son...
I'm sorry to write about this again but I guess I should say that what I thought ATR-X stood for was alpha thalassemia w/ mental retardation so maybe that is...
Was wondering if anybody knows the age of the oldest known adult with Atrx. as my brother is now approaching 37 is anybody aware of anybody older than this? I...
Amanda, My boys are 13 and 11. The oldest, Bear, takes to medications. He takes Adderall for the hyperactivity and Respidal for behavioral issues. Without...
Hi. I'm glad someone is older than my son who is 35...it takes the pressure off of me. :) My nephew who had ATR-X passed away recently and he was 39....
Hi. I'm glad someone is older than my son who is 35...it takes the pressure off of me. :) My nephew who had ATR-X passed away recently and he was 39....
Our son (like some of the others) is not able to walk or talk. As a result, at 13 in March, he is still like caring for a 65 lb. 9 mth old baby! Ben can...
My brother is 32, 33 in March. Kathy's son is in his 30's I think and her nephew passed away last year, he was in his 30's. Dr. Gibbons could tell you for...
Hello, When you have a chance it would be helpful to hear how Ben's seizures were detected if you don't mind. We have wondered on and off if Jasper was having...
dakota used to take meds for seizures but stopped having them all together and now he doesnt. he is on respirdol (sp?) and buspar/buspirone for aggression and...
jasmine jones
iliketoscoot@...
Jan 30, 2007 4:33 pm
916
Lisa, the Drs learned of the seizures thru an EEG test. Things we thought might be signals, like his occasional trance-like state we call "wigging out",...
