Lane, 16mos was hospitalized 4 days for pneumonia this year. Four days later he was hospitalized with RSV. He is still recovering but he is home now after...
Hello, My name is Tanja and I'am a stepmother for 10 years old ATRX- boy named Ville. We live in Finland. Ville has not learnt to speak verbal language...
First, I would like to start off by saying "whew! We're not alone!" Our 10 month old daughter (complete physical female genitalia) was diagnosed with ATR-X a...
Hello everyone, My name is Tammy and my son Miles is 14 months old. I am currently a member but have not posted in a while. Miles weights in at about 17 pounds...
Hi, my son Nathaniel will be 5 in a few weeks. He was on pediasure and would eat good at times and at times it was a struggle. At 2 he weighed 19 pounds. I am...
... currently a ... that ... a ... Miles ... table ... itself ... although ... he ... did ... it ... a ... Hi Thomas is now 3 years of age, we had the same...
Hi I'm jacks mum- Yvonne. Jack is 11 now and a steady 37 pounds. When he was younger he was always ill and lost loads of weight. He never had a feeding tube I...
Hi Everyone! Well, I posted a message before but we haven't gotten any feedback yet. My husband and I are curious of the following: 1. Is there another family...
Hi, I'm Jacks mum, Jack still gags on eating some foods, the female side does interest me as I think atrx boys do carry more female hormones? Not quite sure...
Dear Tammy, Your situation sounds similar to ours with Jasper who will turn 8 in a few weeks. Jasper now weighs around 16kg (around 38 pounds, if I've got the...
Hi After reading the recent posts regarding feeding, I am now unsure if having the gastro is the right thing to do. I know each child is different, but its so...
... with what you are dealing with for more years than I care to remember. Tim usually eats and drinks really well. He has a really odd swallow but it works...
Welcome and sorry for not responding...until your posting, our understanding was that the ATRX syndrome was X-linked, making females potential carriers but...
Barak, my oldest son, now age 14, had the nissan surgery when he was 10 mths old due to failure to thrive. They also discovered he had pyloric stenosis and...
Our son, Eric, is similar to David's. He had the surgery at age one and a half. The Dr. had recommended it earlier but we didn't want to put Eric through...
Hi! Thank you so much for all of your input! We have gotten great feedback about your experiences. Since many of you mentioned that you have not heard of a...
Kaleb has severe picca and has had two sugeries now to remove things he has swallowed.Does anyone else deal with this problem? Also our 7 yr old son who has...
Hi Debbie! Thanks for the welcome! Emma lacked the whole "suck-breath-swallow" coordination when she was born and needed the NG tube at first. The only way to...
Hi Nichole, Liam used to have terrible pica. He too had many surgeries to remove
foreign objects. The worst being a lip pencil that he had swallowed....
Hi, My name is Tammy and I am the mother of Miles. He is now 14 mths and is having problems gaining weight but loves to eat on his good days. I would be...
Hi Nichole, Yes Jack has a milder range of ATRX syndrome, he can walk too. He does have everything that our boys that are severe but on a moderate scale. He...
No, We live in a suburb of Chicago. David and Trish ... From: Katherine <knelson917@...> To: atr-x@yahoogroups.com Sent: Wednesday, February 20, 2008...
In the Database, I have a list of members and where they live. You may want to add your location to the list. The boys and I live in Plano, Texas just North...
Did you know our group here is going on 10 years of sharing (March 2009). I started the group in March of 1999 with only about 5 members. Today, we have 166....
Hi David! Heath, Emma and I would LOVE to do a group gathering. Just name the place and time! Heath's sister actually lives in Texas. I think it would be a...
Thanks for the info.I sooo hope Kaleb outgrows the Picca.It is so scary and he also loves the odd things.He doesnt eat by mouth at all so I wonder if that has...
I would love it too! Katherine Nelson <knelson917@...> wrote: Hi David! Heath, Emma and I would LOVE to do a group gathering. Just name the place and...
And thanks to YOU David for all your efforts. We feel so isolated and this website is the only opportunity to discuss Eamonns needs and identify with others...
I would also like to thank both Dr Gibbons for all the work he has done to find out all about our boys, and you, David, for setting up the groups (here and...
