Dr. Gibbons, Thank you for your response. I understand it much better now. Thank you, David ________________________________ From: atr-x@yahoogroups.com...
I hope everyone is doing well. I just visited Nathaniel's geneticist. We are going to confirm Nathaniel's diagnosis with more bloodwork to a different lab....
Hi Suzett, Good luck with the tests. I am just writing with a bit of hope
for other carriers. I gave birth to a perfectly healthy unaffected baby boy
last...
Congratulations on the new addition Sheralyn Shazza _____ From: atr-x@yahoogroups.com [mailto:atr-x@yahoogroups.com] On Behalf Of wabbz Sent: Thursday, 19...
Hi all, For about 6 months now I have noticed Eamonn holding his breath and straining until his face turns red and his veins protrude out of his neck. He has...
Shelly, my nephew w/ ATR-X used to do that exact same thing. Why, I don't know. He also had a tube. My son doesn't do this so don't know if it is related to...
Tim holds his breath all the time, its just something he does. Sometimes he'll hold his breath almost to the point of passing out - we have to watch that he...
Suzett, I forget where you live, but here in London we were sent to meet with Prof. Winston, a rather famous fertility doc who also presents medical and child...
Hi all, Jasper holds his breath sometimes as well. I have noticed it mostly when he is unwell, though that might be because I'm paying more attention to his...
Hi Lisa, Thanks for the Congratulations. I have just been reading your reply to Suzett. I don't think age has
anything to do with passing on affected eggs. I...
Wow, Sheralyn, I was really moved by your reply. You have been through such a lot. You must be the most ecstatic mom on the planet! Thanks for sharing your...
hi, Congratulations Sheralyn on the birth of your little boy. Hope you are all keeping well. Bad time with Aaron at the moment (again). He seems to be in...
NOEL STUBBS
noel@...
Apr 27, 2007 8:05 pm
1018
Hi Sally, I hope Aaron gets better soon. It was really upsetting to read how much
pain he is in. Liam has only cried real tears a handful of times in his...
Hi everyone, It has been along time since I have written anything to the group, but when I saw these messages about the boys holding their breath and the...
Hi all, where would we be without the web to help us communicate? I would be around the twist looking for answers. Noel, Eamonn continues to have pain...
Sally, Would it hurt to slow down a bit on the movicol to see if his symptoms improve? If you stop it suddenly, I wonder if it would have a rebound effect on...
We are not aware of having any issues with indigestion, Sally, and very sorry about Aaron's situation. Our Ben had bad reflux that was fixed with a g-tube...
Glenn and Kathy From you message you imply that Jered won't be able to eat after he gets his Nissen. Tim had a Nissen, but still eats everything. Hopefully...
Sally, I'm so sorry Aaron is in so much pain. Tim used to get like that when he was younger, we never really knew why either. The idea about the Mickey button...
Shelly, Dr. Gibbons - can you post the citation for the paper about pain in ATRX kids? I don't think I've run across it and would love to see it - Julie...
Hi,everyone,has been along time since i have writting anything to the group,(it takes to me so long write because my bad english)but its very helpful to read...
Hi everyone, Thank you so much for all your lovely replies to my last e-mail. Kathy, you were spot on about the movicol. I went on the internet on Friday ...
NOEL STUBBS
noel@...
May 2, 2007 2:06 pm
1028
Hi Carina, Liam is 16 and still in pull up nappies. We have attempted to
toilet him at school and at home by taking him to the toilet every hour but
this is...
... say ,congratulation for your new baby,is very good to hear "healthy baby boy"I'm feel very happy for that. With my son Luis we attempted at sachool...
Dear Parents Im from Singapore and my son Wayne was diagnose with ATRX on MAy 2006. As theres only 2 cases in Singapore, I realyy have a hard time trying to...
Dear all Me and my wife ( Jasmine ) are considering on having another Kid. But what are the chances that if he is a boy he will be affect with ATRX?...
ATR-X defect is carried on one of the mother's X chromosomes. Boys have a 50/50 chance of being affected and the girls have the same chance of being carriers....
