Hi, I have 2 adorable stepsons that are severly delayed. Stephen is 7 and is able to walk but falls frequently and his brother Michael is 5 and just started...
Hello, This email message is a notification to let you know that a file has been uploaded to the Files area of the atr-x group. File : /boys.png ...
atr-x@yahoogroups.com
Apr 23, 2004 3:35 pm
382
... We also have two sons both affected by ATR-X. Barak "Bear" is 10 years old and Zechariah is 8. We live in Plano, Texas. Stephen is ... Both our sons have...
Thanks for the responding. Your the only ones that did. I'm going to take your advise and look for a local hemotologist to test for Alpha Thalassemia. Our...
Ciao, scusate se non mi sono fatta sentire, il tempo non è mai abbastanza.Ho pensato molto a questi bambini e prego che un giorno si possa avere una...
Hi...we have a 10 yr old son Benjamin with ATRX. In the pictures I have seen over the years, Stephen and Michael appear to be be mind cases if ATRX is really...
Why have I not been able to view any of the pictures? It keeps saying I am not a member, but I thought I was. __________________________________ Do you Yahoo!?...
jasmine jones
iliketoscoot@...
Apr 26, 2004 3:08 am
388
How do you view the pictures. We also thought we were members. We have a 26 year old son with ATRX. I haven't tried to send anything but I think the wife and...
Jasmine,
I'm not really sure why you can't. I do show you to be a
member. I can't view the pictures while I'm at work due
to the block the company has on...
Have any of you had any experience with treating your boys for this problem? Both Bear and Zechariah have very short attention spans and are extremely...
Dakota has been on all kinds of meds. He has not been on ritalin and I don't think adderal, but I do think he has been on something that treats add/adhd...it ...
jasmine jones
iliketoscoot@...
May 11, 2004 5:42 pm
396
David & Linda, Stephen and Michael are extremely hyperactive, with a super short attention span. They literally never stop, Energizer Bunny Syndrome. I know...
David and Linda Thank you for bringing up this issue. we don't have a definite ADD/ADHD dx. for my son, but his behaviour is of much concern and stress....
Thank you for your reply. It IS nice to know that other's face these same behavioral issues. Our Bear has the hyperactivity, microscopic attention span, and...
Hughes,Linda Kay
lkhughes@...
May 13, 2004 12:36 pm
401
Sorry for not responding sooner! thank you for the info! It's great to hear you're having some success. Maybe you've already said, but if you don't mind my ...
Bear is taking Adderal and something like guanefcyne (I'm sure this is not correct but it is close). Sometimes we think it doesn't do a lot to help, but then...
Hughes,Linda Kay
lkhughes@...
Jun 4, 2004 12:18 pm
403
Hi Linda, Hope the new medications help the boys. Does Bear fall from drop seizures? Stephen has been falling way too much lately and we are seriously...
Jen: Bear does not have seizures of any kind. Zechariah does have "non-epileptic myoclonic jerks". He drops to the floor and will occassionally bang his head...
ourhughesfamily@...
Jun 7, 2004 3:35 pm
406
Linda, It sounded pretty simple getting testing done for your boys, wish it was the same here. Our geneticist won't give us a referral for the Hemoglobin H...
I'm sorry that you are having so much trouble with your diagnosis testing. That can get frustrating, I'm sure. Yes, being the step parent can prove...
Hughes,Linda Kay
lkhughes@...
Jun 11, 2004 12:48 pm
410
Hi Guys I thought I would introduce myself. I have a son Jarod (nearly 6) who has newly been diagnosed with ATR-X through genetic testing. Quite a shock...
Hi I'm Jen, I have 2 undiagnosed stepsons that are thought o have ATRX, But has not yet been confirmed. What test did they do on your son for diagnosis? I'd...
Hi Jen Thanks for replying, I had just about given up. I'll answer as I go if that's ok. ... From: Jen To: atr-x@yahoogroups.com Sent: Friday, July 23, 2004...
Hey it's Jen, Yea this isn't a very active site. I'm glad you have your own site though. Had some great info about your family. I love the humor you threw in....
