Thanks for the responses - Not that I am happy that other poor children suffer but its nice to know Eamonn is not the only one. I too, have kept a food diary...
Hi its yvonne Jacks mum--- could someone give me some info on 'Dr Gibbons paper' what is it ??? Is it something I can show my GP as he has not got any idea at...
Hi Yvonne it is Sally, Aaron's mum. Just read your e-mail about Dr. Gibbons paper. I think you may be referring to the report I was sent about possible ...
NOEL STUBBS
noel@...
Sep 3, 2006 11:12 am
815
Hello Our son James was diagnosed with ATR-X about 4 or 6 years ago. We live in Massachusetts. James will be 18 next month. He has severe mental retardation ...
thx for this article...I could only get the abstract without somehow signing up at this website but this is perfect to share with our Dr, who could then look...
Hi to everyone, I emailed Dr Gibbons about the paper and he attached it and forwarded it to me so I am sure if anyone has trouble getting it just contact him. ...
hi Shally i'm italian, i not speak englesh,my name is Lucia, i have two twins Giuseppe and Francesco 4 years old,with the atr-x sindrome ,the article of the...
Hi Mary Ellen, Thank you so much for your e-mail about James - he sounds a lot like Aaron when he has one of his "wild times" (we have not had one for about 6...
NOEL STUBBS
noel@...
Sep 5, 2006 4:30 pm
820
... From: yvonne smith To: atr-x@yahoogroups.com Sent: Saturday, September 02, 2006 7:41 PM Subject: Re: [atr-x] Pain Hi its yvonne Jacks mum--- could someone...
Ciao a tutti sono Fernando papà di Mattia 8 anni affetto da sindrome atr-x , Vi srivo in italiano in quanto non sò l'inglese, ma spero di essere comunque di...
Hi All, I have had my friend translate this for us - she says she is not very good at reading Italian but... I continue to write you in Italian (I hope that...
Hello everyone, it's me, Cameron's mom, Sandy I was just wondering how many kids in our group (if any) are fed via a feeding tube. Cameron has had his since he...
Ciao Sandy, sono Monica mamma di Alessandro, anche Alessandro mangia con Feeding Tubes dall'età di 1 anno, ora ne ha 8. Noi usiamo DUAL PORT WIZARD della...
Hi! Can someone PLEASE translate this for me, or direct me to a site that translates messages so I can understand what this says. Thanks!! Cheers, Sandy From:...
Sandy, You can use www.worldlingo.com <http://www.worldlingo.com/> David ... From: atr-x@yahoogroups.com [mailto:atr-x@yahoogroups.com] On Behalf Of sandy...
Sandy, My son does not have a feeding tube but my nephew who also has ATR-X does...but he does not have this itching problem. Two ideas come to my mind but...
mis ery
medmisery@...
Sep 25, 2006 5:44 pm
828
Also, Sandy, my sister who is now deceased used to make something for her son's g tube site. I think she would take unflavored Maalox tablets and pulverize...
mis ery
medmisery@...
Sep 25, 2006 6:25 pm
829
our son Thomas is a low weight baby awaiting confirmation of ATRX 99% confident that he has the syndrome. Before he was diagnosed a feeding tube was suggested...
Hi everyone, It's been awhile since I've posted.. I guess because my son's dx is a "working diagnosis" (95% certain) and we'll probably never be approved for...
I'm really sorry to get on my soapbox about these drugs but I must pass on some information to you. But before I do, let me also say that I had my son on a...
mis ery
medmisery@...
Sep 26, 2006 2:58 am
833
I called my brother-in-law last night and he confirmed how this is done. He says he pours a thin coating of it in a pyrex pie dish and cooks it almost 24...
mis ery
medmisery@...
Sep 26, 2006 6:32 pm
834
Hi all, I am copying this from our newsletter from our disability network "A Xavier parent has trialled Organic Hosehip Oil - must be organic - around her...
A couple more thoughts about feeding tubes - Is it made out of latex? Could be an allergy - try a different kind of tube. Does he really need it? Is he fed...
My brother, Tim, never had the types of behavior issues you describe. He wasn't physically capable, first of all - he doesn't walk and didn't learn to crawl...
This is an excellent idea! This rosehip oil is good for a lot of things involving the skin...scars, etc... Don't confuse it w/ any imitation scented...
mis ery
medmisery@...
Sep 27, 2006 5:23 pm
838
Julie, is Jacob your baby? Congratulations to all of you, whomever he belongs to. Jerrod also would pinch and pull hair...he has slowed down so tremendously...
mis ery
medmisery@...
Sep 27, 2006 5:33 pm
839
don't worry! I appreciate feedback! At least I know I'm connecting! And who better with then other people in the know! I'm torn about all his meds - it's...
What does this mean? Are you saying that after 2 yrs, you can start weaning them off of anti-seizure meds? I didn't know this! I weaned my son down just...
mis ery
medmisery@...
Sep 27, 2006 11:00 pm
841
Sandy, I am way behind on these notes but printed out the rosehip oil idea that was mentioned in response to you question. Our son Ben is now 12 and has had a...
Oh Goodness - I'm sorry! What I should've wrote was... He's approaching 2 years seizure free!!!!!! (yes after 14 drugs - one is working)..... Once he's...
