http://health.groups.yahoo.com/group/atr-x/ X-Linked Alpha Thalassemia M/R Syndrome Thu, 08 May 2008 20:44:50 GMT Katherine Nelson http://health.groups.yahoo.com/group/atr-x/message/1242 http://health.groups.yahoo.com/group/atr-x/message/1242 As I mentioned before, we're considering the PGD as well. We have a consult on June 2nd. It's comforting to know that we're not alone and that we have this Thu, 08 May 2008 01:24:52 GMT jasmine jones http://health.groups.yahoo.com/group/atr-x/message/1241 http://health.groups.yahoo.com/group/atr-x/message/1241 I don't have a child, myself, with ATR-X, but my brother has it. He'll be 18 this year, and is the youngest. My younger sister is 20 and carries the gene, Wed, 07 May 2008 22:12:24 GMT suzett costa http://health.groups.yahoo.com/group/atr-x/message/1240 http://health.groups.yahoo.com/group/atr-x/message/1240 I want to thank everyone for your help. I think we've made a decision of in vetro and PGD. Were going to do it the "old fashioned way", and hope for the best, Wed, 07 May 2008 16:57:19 GMT Katherine Nelson http://health.groups.yahoo.com/group/atr-x/message/1239 http://health.groups.yahoo.com/group/atr-x/message/1239 Hi Suzett! Were Heath & Kat, Emma's parents.Emma is 13 mos. Genetically she's a male, but physically she has female genetalia. Since she looks completely Wed, 07 May 2008 15:05:54 GMT nathaniel http://health.groups.yahoo.com/group/atr-x/message/1238 http://health.groups.yahoo.com/group/atr-x/message/1238 My son Nathaniel is 5. He has alpha thalassemia due to a deletion on his 16th chromosome. The deletion is de-novo meaning neither I nor his father carried Wed, 07 May 2008 14:37:13 GMT David and Trish Hess http://health.groups.yahoo.com/group/atr-x/message/1237 http://health.groups.yahoo.com/group/atr-x/message/1237 Suzett, Our son Ben was our first born and we had always wanted more than one child when we were married. But when Ben was born and had so many needs it Wed, 07 May 2008 09:52:52 GMT Lisa Beck http://health.groups.yahoo.com/group/atr-x/message/1236 http://health.groups.yahoo.com/group/atr-x/message/1236 Hi Suzett, We have one other child, a girl, now 5. She was born before Dr. Gibbon's team had located Jasper's atr-x mutation so we did not yet know if I was a Wed, 07 May 2008 00:28:09 GMT Nichole http://health.groups.yahoo.com/group/atr-x/message/1235 http://health.groups.yahoo.com/group/atr-x/message/1235 ... you ... We have had 4 boys only one affected. We did lose one to SIDS other than that the other 2 show no sighns. Nichole Kalebs mommy Tue, 06 May 2008 23:14:24 GMT Suzett Costa http://health.groups.yahoo.com/group/atr-x/message/1234 http://health.groups.yahoo.com/group/atr-x/message/1234 Quick question, how many of you have other children with atrx. Did you get tested for carrier?If so, anyone test negative and still have a child with the Mon, 05 May 2008 23:50:20 GMT Nichole http://health.groups.yahoo.com/group/atr-x/message/1233 http://health.groups.yahoo.com/group/atr-x/message/1233 Hi its Nichole Kalebs mom. Kaleb has had a rough year this year. He has started having having issues with constipation and impactions. He has also gotten MRSA Tue, 22 Apr 2008 07:44:17 GMT charliesangeldlg http://health.groups.yahoo.com/group/atr-x/message/1232 http://health.groups.yahoo.com/group/atr-x/message/1232 Just wanted to say that Charlie had the gastro and nissen fundop last thursday and is doing great, he only spent 1 night in phdu, and we were allowed home Sun, 20 Apr 2008 03:09:07 GMT ann allen http://health.groups.yahoo.com/group/atr-x/message/1231 http://health.groups.yahoo.com/group/atr-x/message/1231 Hello, Eric cried like that for four years. He was totally inconsolable. I believe his pain was due to his delicate little digestive system. He would cry to Sat, 19 Apr 2008 09:24:43 GMT aflybabie http://health.groups.yahoo.com/group/atr-x/message/1230 http://health.groups.yahoo.com/group/atr-x/message/1230 Wonderful news :) Lisa ... the ... the ... such a ... that we ... are ... starts ... well, I'm ... for Fri, 18 Apr 2008 22:11:33 GMT Ruth http://health.groups.yahoo.com/group/atr-x/message/1229 http://health.groups.yahoo.com/group/atr-x/message/1229 Travis' Surgery went great and we are finally at home! He was in the PICU for 2 days. Just to keep a close eye on him. We couldn't stay the night with him so Fri, 18 Apr 2008 19:03:48 GMT David and Trish Hess http://health.groups.yahoo.com/group/atr-x/message/1228 http://health.groups.yahoo.com/group/atr-x/message/1228 Hello, I agree with Lisa. Our son Ben, now 14 use to have crying spells and we didn't know what it was. I thought when he was little that it was teething.