Hi Christine, Brianna's cataract started about 8 months ago. It's something that the eye doctor is keeping track of. Eventually she may need surgery but the...
Thanks Sharon. I think at this point I will give the articles a miss. When Talitha was first diagnosed I read a bit about the possibilities, and it was not...
Dear Christine, Talitha is gorgeous!! I am so happy you are finding the group helpful, have you had a chance to read all the info posted in the group yet? ...
Thanks Maria, we think so, but then we are biased!! No, I haven't had a chance to read the archives yet, but I will do that when I get some uninterrupted time....
Thanks for the photos, Sharon and Christine. Your girls are gorgous! Kimberlee is very similar in looks to Talitha. Her hair has just started growing now. She...
HEY SHARON Your baby girl is a stunner, I am so happy that we are all getting to see each others children online and we have so much incommon Maria ... From:...
HELLP is an extreme form of pre-eclampsia (toxemia). The acronym stands for H - hemolysis, breaking down of red blood cells EL - elevated liver enzymes LP -...
... Good morning everyone. Well I thought I would send you all an update on Josh and thank everyone for all of their prayers. Josh went to Birmingham ...
Hi Chris I see Thomas has already told you what HELLP syndrome is, thank-you Thomas for that. What I mean by tremors, is that sometimes Jake just starts to...
kelly
kelosb@...
Feb 3, 2003 3:36 am
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Thanks Kelly, that is all interesting information. Chris Hi Chris I see Thomas has already told you what HELLP syndrome is, thank-you Thomas for that. What I...
Hi. My name is Lisa Stewart and I have a brother, Travis, that has been recently diagnosed with Tay syndrome. Travis will be 15 years old in a few days and for...
Welcome Lisa to the group, my name is Maria Liistro and I have a son that is 13 years old and was only diagnosed recently with the disorder , I have set up a...
Hi Lisa My name is Kelly, and I have a 2 1/2 year old son named Jake, who has TTD. We are from Ontario, Canada, and unfortunately we are the only Canadians in ...
kelly
kelosb@...
Feb 4, 2003 8:25 pm
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Hi Kelly, I just wanted to let you know that Tara did get the chicken pox at 3 years old, she had it very bad and I was very concerned about her skin being ...
SnackGirl9@...
Feb 5, 2003 3:13 am
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Hi Christine, Lee & Talitha, welcome to the group, My name is Michelle and my 7 year old daughter Madeline has TTD. She was diagnosed at 2 years of age....
Welcome Lisa & Travis to the group, My name is Michelle and I have a 7 year old daughter with TTD. Madeline was diagnosed at age 2, she is severely growth...
Thank you Michelle. Madeline is about the same size as Talitha, but of course Talitha is 4 1/2. Can I just ask, how does Madeline get around at school, does...
Dear Lisa, I am interested to find out why it took so long for the doctors to diagnose Travis and how and why it was confused with another Disorder, I am happy...
Hi Kelly. Sammy-Joe had the chicken pox twice once when he was four and then when he was 6. He had them everywhere and was quite ill with them , he had to be ...
If you look at Ruds syndrome it seems very close to Tay syndrome in some ways. Fifteen years ago the doctors looked at Travis like he was a medical phenomenon...
Travis and Madeline seem similar in some ways. Travis also loves his shopping catalouges and, he too, laughs at the craziest things. Getting to your...
I believe he was referring to Dr. David Busch, who passed away last year (see http://www.cockayne-syndrome.org/Dr_Busch.htm). Dr. James Cleaver is doing some...
Hi Lisa, I knew about the Doctor that died, but there are many doctors now researching this disorder, if you go into the link on my web page that says XP...
Hi Lisa I was interested that you said that you and your sister could be tested to see if you carry the gene for Tay Syndrome, My husband & I were told there...
Hi Chris Madeline has a small wheelchair at school which she uses in the playground and when she goes on excursions, I have stressed to her teachers not to use...
Thanks for the info Michelle. Talitha was/is quite the bum-shuffler too. Chris Hi Chris Madeline has a small wheelchair at school which she uses in the ...
Hi everyone again, this is what is featured in the Essendon Football Club web page, they too have made an error on gene therapy ,so whoever rings me I explain...
Hello everyone, I know its been a long time but with the new school year life has been hectic. Welcome to all those new members. Our son James has TTD and at...
Hey everyone Hope you are all well? I really think its been along time since I have posted in the group, I hope all of you are well and taking care of each...
