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atr-x · X-Linked Alpha Thalassemia M/R Syndrome
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Messages 1054 - 1083 of 1249   Oldest  |  < Older  |  Newer >  |  Newest
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1054
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...
Kathy
kshope63
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Aug 1, 2007
12:41 pm
1055
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...
mis ery
medmisery
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Aug 1, 2007
2:54 pm
1056
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...
suzett costa
suzettcosta
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Aug 1, 2007
4:37 pm
1057
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...
David and Trish Hess
hess265
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Aug 1, 2007
5:45 pm
1058
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...
yvonne smith
ybs04
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Aug 1, 2007
9:33 pm
1059
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...
suzett costa
suzettcosta
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Aug 1, 2007
10:30 pm
1060
... cheltenham, Gloucestershire. ... too has a cheeky grin and smiles at everything. ... coping- you sound a very strong parent. ... sign up for your...
charliesangeldlg
charliesange...
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Aug 2, 2007
10:12 am
1061
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...
rjgibbons2001
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Aug 2, 2007
11:11 am
1062
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...
Lisa Beck
lisa157073
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Aug 2, 2007
2:35 pm
1063
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...
Lisa Beck
lisa157073
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Aug 2, 2007
2:39 pm
1064
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...
Lisa Beck
lisa157073
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Aug 2, 2007
3:10 pm
1065
... 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...
Lisa Beck
lisa157073
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Aug 2, 2007
3:21 pm
1066
Lisa, I think the idea about the questionnaire is great and I think we could all benefit from it. let me know if I can help/ Suzett To:...
suzett costa
suzettcosta
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Aug 2, 2007
3:47 pm
1067
Hi Yvonne, Liam has never had any extra respite in the school holidays and all the clubs they run wouldn't take him as they couldn't supply the one to one care...
wabbz
wabbz2005
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Aug 2, 2007
8:56 pm
1068
Hi Debbie, Thats really good of you. I had the result of the appointment with the psychologist today. She said that I needed 1 to 1 with her as it was me...
yvonne smith
ybs04
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Aug 2, 2007
9:58 pm
1069
Hi Sheralyn, thanks for getting back to me. In the 11 years of Jacks life I have never had a social worker. I have been told that the lack of social workers...
yvonne smith
ybs04
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Aug 2, 2007
10:48 pm
1070
Hi Yvonne, It's ok I have just remembered that you are in Cheltenham. I hope you have not had too much trouble with the floods. Speak soon Sheralyn ... From:...
wabbz
wabbz2005
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Aug 3, 2007
9:02 am
1071
Hi Yvonne, I only got a social worker last year as they have to start working with adult services to support his transition. Before that if I ever needed...
wabbz
wabbz2005
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Aug 3, 2007
9:10 am
1072
Hi Yvonne, I have phoned my Social workers manager and asked her if she has any advice for you. She said that there is a 1989 act that says by law, all...
wabbz
wabbz2005
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Aug 3, 2007
9:17 am
1073
Hi again, thanks for your support. Yes I have a lady at social services that deals with Jack-a family worker. But shes part time and never seems to be there. I...
yvonne smith
ybs04
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Aug 3, 2007
12:35 pm
1074
Hi, I live in Cheltenham Gloucestershire, england. Its funny though because I didnt feel depressed until she said I was. Its made me feel worse!!. I just dred...
yvonne smith
ybs04
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Aug 3, 2007
12:39 pm
1075
Hi my name is Kay and I've been a member of this group for a long time but can't remember posting before. My son is 12 and is undiagnosed, he has had tests...
Kay Ragsdale
kayragsdale
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Aug 4, 2007
9:39 am
1076
Hi Kay, Isnt it great to speak to someone who knows what they are talking about!! Kay, my son is 11, I can cope with his health issues-Ive done so since he was...
yvonne smith
ybs04
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Aug 4, 2007
11:58 am
1077
Hey Lisa I also thought that the questionnaire is a very good idea! If you don't mind my limited time only on weekends (as i'm working), i wouldn't mind...
Jasmine Sin
benjasminewayne
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Aug 4, 2007
3:06 pm
1078
Hi everyone, Just catching up on the messages. We have had a week in hospital with Aaron. Finally after four years someone has decided to operate on his tummy...
NOEL STUBBS
noel@...
Send Email
Aug 4, 2007
7:47 pm
1079
Hi, Sorry just read some more messages. Aaron has one night a week in his school's residence but if he isn't in school he doesnt get respite. Aaron is hardly...
NOEL STUBBS
noel@...
Send Email
Aug 4, 2007
7:53 pm
1080
Hi Agree with the others, I think that the questionare is a really good idea. Also happy to offer help. Lisa (a different one!) ... Email sent from...
lysajayne@...
aflybabie
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Aug 5, 2007
2:04 pm
1081
Hi Kay, I'm glad you decided to write -- what a helpful and informative posting! This really gives me the impetus to speak to our social services people....
Lisa Beck
lisa157073
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Aug 6, 2007
12:16 am
1082
Hi, Thanks for your responses. I will go ahead and draft an initial questionnaire and then post it here for comments, but as it's summer holidays, nobody hold...
Lisa Beck
lisa157073
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Aug 6, 2007
1:32 am
1083
... part of this group for a while put haven't been on for some time. I think I have a copy of the article you are refering to about the gastro stuff. The name...
voetbergpatricia
voetbergpatr...
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Aug 6, 2007
11:59 pm
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