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atr-x · X-Linked Alpha Thalassemia M/R Syndrome
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204
Hiya everyone, Just a quick note to update on Aaron and his recent hospital stay. Firstly I would like to say a great big thank you to Nancy Bradel, Ann Allen ...
NOEL STUBBS
noel@...
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Dec 17, 2002
10:26 pm
205
Greetings to all, Happy Holiday!!!! The boys are all doing well. Zechariah has recovered from his surgery and back to normal. Bear...is still laughing all...
David Hughes
rarediseases
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Dec 18, 2002
1:31 pm
206
Noel, I am glad to hear Aaron is feeling better and is home from the hospital. How did you keep your cool when they gave him the wrong meds? That would have...
Nancy Bradel
tomdani02
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Dec 18, 2002
2:48 pm
207
Hi everyone, My computer is down at home so I am just now reading the messages from the group (I am at the local college). I am glad Aaron is doing much...
mis ery
medmisery@...
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Dec 19, 2002
10:09 pm
208
Happy Holidays! Kathy Jones and all. It seems to be such a recurrent theme that our sons have stomach acid problems. Either people are feeding their kids...
Guthmann, Teresa
u38416
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Dec 24, 2002
3:06 pm
209
Hello all! I wish you a happy and a well 2003!!! How are you and your children or your brothers with ATR-X? My brothers Wim (almost 29) and Gerard (13) and my...
dietaheij
dietaheij@...
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Jan 10, 2003
1:59 pm
210
Hi Dieta and All, It is good to hear from you and to know that your family is doing well. Are you out of school now? My son Jerrod, now 31, seems to be...
mis ery
medmisery@...
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Jan 10, 2003
7:23 pm
211
Hoi Dieta, Leuk weer ff iets van je te horen. We hebben de afgelopen tijd erg druk gehad o.a. met de geboorte van Kyra Rigt en nu zitten we midden in een...
Gerrit Jan Kamphuis
gjkamphuis
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Jan 10, 2003
8:13 pm
212
Hello All, As to the question of the number of ATR-X cases known, Dr. Gibbons would be the one who may know the answer to this. David David Hughes, Founder ...
David Hughes
rarediseases
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Jan 13, 2003
5:37 pm
213
Hi All, Is Dr. Gibbons a member of this group? Wouldn't it be great if we had some experts of different kinds to help advise us? Kathy Jones ... ...
mis ery
medmisery@...
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Jan 13, 2003
5:48 pm
214
Yes, Dr. Gibbons is listed as a member of this group and receives the email messages posted in this group. Members can send a message directly to Dr. Gibbons...
David Hughes
rarediseases
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Jan 23, 2003
5:22 pm
215
Dear Kathy, Some more reading for you! These are the notes my herbalist gives to her clients on radionics. Hope they are of some interest to you. RADIONIC...
NOEL STUBBS
noel@...
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Jan 26, 2003
6:33 pm
216
We are new to your group but would enjoy sharing experiences as we raise an ATR-X boy named Ben. We recently got advice to do surgery to staighten Ben's back...
hess265 <hess265@...>
hess265
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Feb 21, 2003
3:13 am
217
Dear Trish and David (and all), Welcome to the group! I enjoyed reading about your precious Ben. He sounds so much like my son Jerrod, now 31, was at that...
mis ery
medmisery@...
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Feb 21, 2003
11:57 pm
218
Dear Trish, David and Ben, Lovely to read your e-mail about Ben. Our little boy, Aaron, is now just over 4 years old. He was diagnosed with ATR-X when he was...
NOEL STUBBS
noel@...
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Feb 25, 2003
7:03 pm
219
Dear Kathy, Thank you so much for your note. It was so interesting to read how similar your son Jerrod is to Ben. In answer to your questions regarding Ben's...
Patricia Hess
hess265
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Feb 26, 2003
3:14 am
220
Dear Trish, Wanted to introduce my family. Here are our three kids. Abby (10), Alex (14)(my ATRX guy) and Andy (10). We live in St. Paul, Minnesota. Alex...
Guthmann, Teresa
u38416
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Feb 26, 2003
12:52 pm
221
Carissima Trish, sono la mamma di Alessandro,5 anni, come Ben ha molti problemi di costipazione, qui da noi in svizzera uso l`olio di parafina, che rimano pił...
Monica Dominioni
dmoni71
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Feb 26, 2003
2:08 pm
222
Dear Patricia, My son, Tommy has not be diagnosed at this time but shares all the same features of those with ATRX and is currently being tested for this ...
Nancy Bradel
tomdani02
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Feb 26, 2003
2:46 pm
223
Dear Patricia, I also forgot to mention that we also live in Chicago, right by Midway Airport. We should try to get together sometime with our boys it would...
Nancy Bradel
tomdani02
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Feb 26, 2003
2:50 pm
224
Dear Trish (and All), Thank you for your msg and for the information about Senokot, etc. Does Ben drink just regular milk that is lactose free or is it a...
mis ery
medmisery@...
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Feb 27, 2003
2:05 am
225
Hi Sally, I enjoyed your msg about Aaron and wanted to ask a question. What are these paracetamol suppositories? I have never heard of them. However, I have...
mis ery
medmisery@...
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Feb 27, 2003
2:19 am
226
Welcome! My husband and I can't help being amazed when we read about other children. How similiar they are.... Although our boys do not have any spine or hip...
EMorrone@...
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Feb 27, 2003
3:13 am
227
Dear Sally and family, After reading your e-mail I thought I could offer some of our "tricks". We have two affected boys, Anthony is 12 and Dominic is 8....
EMorrone@...
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Feb 27, 2003
3:44 am
228
Dear Leslie and family, Thank you somuch for your message and for the information about feeding which was really helpful. We cannot believe how well Aaron is...
NOEL STUBBS
noel@...
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Feb 27, 2003
9:19 pm
229
Dear Teresa, Just been reading your message to Trish. What a lovely photograph, you have three gorgeous children. Alex, like Aaron, looks very cheeky and...
NOEL STUBBS
noel@...
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Feb 27, 2003
9:48 pm
230
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Patricia Hess
hess265
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Mar 1, 2003
9:39 pm
231
Dear Sally, Noel, Joshua and Aaron, Thank you for your note. Our therapists at DuPage Easter Seals say that any standing/assisted walking(Ben needs a great...
Patricia Hess
hess265
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Mar 1, 2003
10:39 pm
232
Dear Kathy, I just buy the lactose free milk in the milk section of the store. It comes in half gallon containers and is anywhere from $2.60 a 1/2 gal. -...
Patricia Hess
hess265
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Mar 1, 2003
10:41 pm
233
Type O+ blood for my Alex. If you find out some food tips from your book - please pass them on. I have found that my Alex cannot tolerate chocolate, much dairy...
Guthmann, Teresa
u38416
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Mar 3, 2003
2:32 pm
Messages 204 - 233 of 1259   Oldest  |  < Older  |  Newer >  |  Newest
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