When Nathaniel was younger he had many issues with oxygen desaturations and a laryngiamalacia( floppy larynx). He was on oxygen for over a year. Anyway because...
Hi Everyone! Thank you all for being a part of our Alpha Thalassemia X-linked Mental Retardation Syndrome support group. I hope you received my previous...
Hi All Things have been rather intense lately. I've read as much of your postings as possible. For those toileting, keep going! We've had some success here...
Hi its Jack Mum in England. My 2 daughters left home as soon as they were able due to Jacks Behaviour. Jack is more able than alot of Atrx boys-meaning he can...
Its such a heartache and I certainly take my hat of to you for making a decision. Obviously your decision is carefully considered and at least you can begin...
Hi there Jack's Mom My heart goes out to you! How old is your son and daughters? I would love if you shared more of your story with me (if you feel like it)...
We also heard of the "circle of friends" and are still trying to organize one. It's tough because everyone has a life and few seem to want to commit to us on...
I know exactly how you are feeling right now. We placed our son in an Adult Foster Care home 7 1/2 years ago when he was 26. That truly was the hardest thing...
Hi everyone, I haven't been near the computer for several weeks now so am just catching up on the messages which broke my heart. Noel has been away on his ...
NOEL STUBBS
noel@...
Jul 11, 2007 11:23 am
1046
Hi I'm not sure if you were repling to Yvonne's reply to me or to my Major Change message. Either way - you've lifted my spirits. I am heading to Frankie's...
I'm heading to Frankie's daycare in a moment. Last thursday, without prior warning, intevention, resource building, etc. The daycare called to say they felt...
Noel, Bear, my oldest, has been much more difficult to manage at time due to the pinching, biting and hair pulling. However, since he has been on Adderall and...
Dakota used to be extremely aggressive, which he still can be if he doesn't feel good, is hurting, ill, etc. But he is on Buspar (Buspirone) which, correct me...
jasmine jones
iliketoscoot@...
Jul 13, 2007 5:33 pm
1050
Hi Brenda, Yeh Jack is 11 on Monday 16th and my daughters are 26,19,17. they are good girls. Shame they didnt have much of a life at home. We still are...
I've not been on the message board for a while, but wanted to share some news with everybody.After a great deal of thought we have decided to send Mark to a...
Hi I'm mum to 21 month old Charlie, he is a happy, gorgeous little boy, whos had a bit of a tough time, he has an asd, which they tried to close last oct via...
Hi Debbie, Are you living in England?? You sound british! I live in cheltenham, Gloucestershire. My son Jack is 11 he was diagnosed with atrx when he was 4....
Not to long ago there was a message about an article that was published by Dr. Gibbons on abdominal pain, but I have not seen and reply. If anyone knows of...
Hi Kathy, My son (also Jerrod), had his undescended testicle brought down (not removed) many years ago. I think I was told that it needed to be done before he...
My son Nathaniel also has has testicle brought down through surgery when he was about 1. They said if not it would rot and could cause complications, they...
Kathy, Our son Ben also had his testicles brought down not removed. I think I would get another opinion. Ben got along fine after the surgery. He was in a...
Hi david and trish, its Yvonne Jack's Mum. Jack's now 11 but I think he was about 6 when we asked for an appointment to get him checked as we noticed his...
Hey Yvonne, I am sad to hear about the rough time you're having. About the testicle I would ask another doctor about it. Like I said before Nathaniel had his...
... cheltenham, Gloucestershire. ... too has a cheeky grin and smiles at everything. ... coping- you sound a very strong parent. ... sign up for your...
I'm very happy to send a copy of the paper on abdominal problems in ATR-X syndrome to anyone who would like it. It is rather technical but may be of use in...
another thread arising from Kathy's e-mail: ... thanks all, Lisa P.S. If enough people were interested in participating, I would be willing to write and...
Hi Kathy, Sorry to hear about Jared's continued pain. I've created a few threads in response to your e-mail, but my first one is: What is GERD? Thanks, Lisa...
Yvonne, That completely sucks about the respite. I attended a Mencap seminar recently (on wills to provide for people with LD, headache, but helpful...) and...
... Kathy, Jasper had an undescended testicle which was "brought down" via surgery when Jasper was between 12 and 18 months (I can look the specific age up in...
