Thanks Linzee, I would like to find out more about 11q, I know all about cri du chat, and just wonder if some of his features are to do with 11q, or are they...
I hope everyone had a Merry Christmas and has a great new year. I'm excited to see everyone this summer in San Diego for the conference! Registration forms...
Hey Dalia, We are in Clermont FL, about 30 minutes from Kissimmee! You will have to let us know if you come visit! Jana/Jeremy/Faith :) ... From: Dalia S....
My brother's best friend lives in Clairmont! I will let you all know. Dalia Jana Wells <janabananablue@...> wrote: Hey Dalia, We are in Clermont FL,...
... Does your son have a unbalanced translocation of 5p-/11q+????? If so, my daughter also has 5p-/11q+. I would love to hear about your son!!! Stefanie...
Hi Ladies Alexandra has been potty training for the past year and she still goes on her pull up, finally lately she comes to me and tells me when she is dirty...
I am on this list because I have 3 grandsons with 11q deletion. But I also have a granddaughter with 2q deletion and that is what I am writing about...Puberty...
I don't know much, but we did meet families whose children had cataracts at the last conference. Vision problems in general seem very, very common. I hadn't...
My son Daniel (11q 24 to ter) is almost 5 and his molars (top and bottom) did not erupt until this past year. He was however on a soft food diet until this...
Thanks for the messages about 11Q trisomy. has anyone posted a picture of a trisomy child on here? I havent seen any pictures of kids who only have trisomy11...
Dalia: Hi, my name is Sandy and I have a granddaughter, Jade (3 yr) with J.S.. We started potty training her when she turned 2. I took a poster board and cut...
Thanks for the info. everyone!!! I will definiteley talk to our Dr. about the bone scan, etc.Lily was also late with her baby teeth, but hasn't been late with...
Congratulations, and welcome!!! I don't think any of us knew aboutJS either until after our kids were diagnosed. You were blessed to find out before...
I have been working with Cody for many years now with potty training. He is now 10. This past summer I finally learned that sitting him on the potty backwards...
Oh wow! These are great! Thank you so much! Dalia SANDYCST1@... wrote: Dalia: Hi, my name is Sandy and I have a granddaughter, Jade (3 yr) with J.S.. We...
Laura, How terrible to know Cody is not getting the attention he deserves. Sometimes I wonder about the teachers. I had some problems with Alexandra's teachers...
Hi I am the mother of a 7week old girl with JS and was wondering if any of you had expierenced heart problems and if so how severe. My daughter has a AV canal...
My daughter, Faith (3 yrs) has an 11q23.3 deletion and Hypoplastic Left Heart. She has had 2 of the 3 stage surgeries to correct. She will be having the 3rd...
Our heart team says after her heart surgery that she should be able to live a Normal life from the heart stand point, and they are also somewhat familiar with...
I would defiantely have your daughter followed by a hematologist. Many of the JS children have a bleeding disorder where the count might be normal, but the...
I love the pictures you posted of Lily. I can't believe how grown up she is getting. I have a picture of her and Brayden together from the conference in...
I would definitely follow Linzee's advice and make sure they do a function test prior to surgery. Faith's platelets were at normal levels by the time they did...
Hello friends, Linzee, I read your recent posting on the group (Re: chailan, 11q), and I wondered if you wouldn't mind sending me Dr. Grossman's contact info....
Laura, I can relate to the problems with teachers & school!! WHile Lily is Potty trained, she only 50% of the time goes on her own and makes it in time to not...
In a message dated 1/7/2008 12:44:52 P.M. Central Standard Time, lworden31@... writes: Laura, I can relate to the problems with teachers & school!! WHile...
Yes, you would ask for a Platelet Function test. We had to ask for one for Faith, because our children's platelets will show a normal count, but they don't...
Hello Chailens mom again. Has anyone had problems with bloody stools? Chailen had blooy stools while in The NICU which they Thought was NEC but later...
... Lily had bloody stools 2 weeks after she was born. She was also on Nutramagen. We went to a ped.s GI. Sha put Lily on an amino acid formula- she said she...
Hi This is Sandy, Jade's grandmother. We experienced the bloody stool with Jade when she was younger. We still watch for it but it seems to have stopped....
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