Katja, Welcome to our support community. Your english is very good. I'm sure everyone can understand it without too much trouble. My Finnish is not good at...
You have odd wording, but it's understandable. Maybe the epilepsy surgery accidentally removed something important? Or maybe the seizures caused him to loose...
Hello to ATR-X parents, families and friends, I have been a member of this site for quite some time and have tried to keep up to date with issues and events....
Hi Shelley I can't relate to many of your issues I'm afraid. Although at this stage Jarod hasn't been definitively diagnosed with ATR-X yet, so this might...
Hi Shelley, I will try and answer a few of your questions using our own personal
experiences. Liam sat unaided at about 4 years old. His physio used to prop...
Thank you to the responses. To Shazza, why on earth wont they give Jarod the HbH test? We are in Queensland and our health system is pretty crude compared to...
Hi again Shelly, Liam is small for his age (thankfully, as I always joke that I will be an 80
year old woman being dragged round by the hair by my caveman of a...
Hi Shelly Just to clarify, Jarod is being tested by Dr Gibbons and had already received a positive for the Hbh inclusions here in Adelaide, before his sample...
Hello Shelly, My name is David and my wife is Linda. I am the founder of this group and we have two sons both affected by ATR-X. The description you provided...
Well Eamonn is at respite tonight. A lovely lady who lives about 10 minutes away. She is a real kindred spirit who was fostered lots of children and...
Hi Shelly I hope you enjoy your well deserved break and best of luck with the IVF. Cheers Shazza XX ... From: mitoeamonn To: atr-x@yahoogroups.com Sent:...
Hi Shelly, Don't worry about what you call me I will answer to anything.
Wouldn't you try naturally for a child and have the tests done at 11 weeks
or would...
I hope I don't offend you but why don't you want to have another ATR- X kid? I am an autistic person and a few years back I was being bullied badly and hoping...
Shelly, As to your question about how the boys communicate with one another.... Well, in many ways they are like typical brothers. They share the same bedroom...
What is appropriate play? I thought the whole point of play was to have fun. I can have lots of fun putting a puzzle together, arranging objects symmetrically,...
It's been a while since I've posted. I'm now in school working on my BN. I read all your postings. To those who are new - WELCOME. My son is doing good....
In a few weeks, I'm presentation and oral report on ATRX for my community rotation group. I'll be discussing the syndrome, and relevant data. I am also...
Blank I would like to share some exciting news with the group. As some of you may know, I am the founder of this group, as well as, many other groups that...
As soon as I go to post something Eamonn starts screaming/laughing. He had an endoscopy yesterday as he vomits about 8-9 times a day. We have to take towels...
Hi Shelly What wonderful news. Congratulations on the pregnancy! You made me smile whilst talking about Eamonn's antics, these kids have incredibly sparkly...
Hi Shelly, I a really pleased about your news and can't believe that you
would consider my feelings when you have such good news. I am sat here
crying while I...
I am presenting my report this week to my nursing group. I would like to ask once again for your help. In quote; "As a summary to this exercise, share...
Blank I would like to share some exciting news with the group. As some of you may know, I am the founder of this group, as well as, many other groups that...
Hi Shelly, Alex is on two prescription meds for stomach acid. Aciphex and protonix. We started with protonix and it seemed to help some but there is a risk of...
Hello everyone, Tomorrow is the day we take Eamonn to have a PH test as well as checking his swallow reflex to ascertain if a fundoplitation (??)is necessary....
Shelly, Our oldest son had this procedure done when he was 10 months old. He was diagnosed with failure to thrive and they discovered that he had a problem...
Hi Atrx Parents My Name is Yvonne from England. My son Jack is 9 and has been diagnosed with atrx since he was 4. Does anyone have problems with challenging...
Hi Yvonne, Welcome to the group! I am sure you will find the other parents experiences with our children very helpful. We have a son called Aaron who is now...
NOEL STUBBS
noel@...
Jan 6, 2006 6:26 pm
715
Hi, thanks for e mailing me I thought I was the only one coping in england with atrx!! My son Jack is 9, we new he had atrx when he was 4. I have 3 daughters 2...
