Hello everyone , I would like you all to take a look at these wonderful organisations , maybe you can submit your children if you are living in the UNITED...
its for kids in America (came about after the team at cagedkids split up) ... From: Maree To: TTD-support@yahoogroups.com Sent: Saturday, February 05, 2005...
Hello Everyone I am so sorry I havent written in here for a long time , I am trying to get this Trichothiodystrophy Research Trust fund off the ground , which...
Could everyone please give a big warm comforting welcome to Kristy , our newest member to our group , Kristy has only just been told dianoses to her boy who is...
Welcome Kristy~ I am sure that you are happy and overwhelmed to finally getting a diagnosis. I have a little boy named Collin who is 4 1/2 years old. He was...
Kristy, Welcome. We have a little girl who will turn 2 in March. She has had her TTD diagnosis almost since birth, but more definitive since about 6 months...
Sydney has "spells" every few weeks where she just screams for days. Typically it last 2-4 days. It seems to taper on and off and seems to be associated with...
Hi Jodi , Sammy-Joe has often had many of those spells , now that he can speak to me he tells me that he has chronic aches and pains where everything hurts him...
Hi Jodi , Have they checked Sydneys Vitamin d levels recently and Calcium Levels , because I also found that when Sammy-Joes pain is more pronounced , its when...
Jodi ~ Collin has had many days like that as well as MANY sleepless nights. It seems to bother Collin more at night than during the day. Like you I am not...
Hi Julie , I have taken Sammy-Joe to a chiropractor ,in 2000 , I started taking Sammy-Joe to a very nice chiroprator that believed that Sammy-Joes spine was...
Welcome to Kristy and your family, I have a 10 year old daughter, Kimberlee, with ttd. She was born at 30 weeks and weighed 2lb4oz. She was also on oxygen for...
We have two daughters, Alexandria will be 6 this summer and Zoe will be 4 on March 1st. Both have TTD. We did not get a diagnosis until Feb. 2004. Alex was...
What is the other name for the Kaprex? Generic name? I give Sydney clonidine for sleep and sometims use ibuprofen or acetaminophen for pain, but it does not...
Hi Jodi , I am not sure what the generic name is as it is a natural remedy , I will write down the info on the bottle so may be you can find something similar ...
Thank you Amy for all your kind words , you know that as long as we keep the group going you are a life long member so please there is no need to thank me for...
Hello , I just wanted to add also that I too have tried many different Natural remedies on Sammy-Joe , only due to the fact that alot of the drugs that I tried...
Thanks so much for the information. I too feel like almost anything is worth a try. Jodi ... From: MARIA LIISTRO To: TTD-support@yahoogroups.com Sent:...
This is my 4 year old son Matthew and 8 year old daughter Angela.Now that they found that Matthew has TTD they want to test Angela for it also.One of Matthews...
Hello Kristy your children are gorgeous, Both parents are carriers to ttd ,but that doesnt mean all the children you have will be affected by TTD , yes the...
Yes, one can have it and not the other. For a child to have TTD they need to get the gene from both parents. If they only get one TTD gene from one parent...
Hi Kristy~ Like Maria and others have said it is a 1 in 4 chance that each of your children will have TTD. My oldest child has TTD and has MANY medical...
Hey how is everyone doing?I hope everyone is ok.Matthew was admited to the hospital on friday.His temp went up to 104.He had pneumonia.He can not go back to...
Kristy~ Yes, Collin does tend to loose his hair when he has a high fever. I do know how ever that not all of the children in the support group have that ...
Andréa lost her hair as soon as she has something wrong. We went to the hospital last week to for her forced feeding. She grow 3kg and 5cm the 8 first months...
Every time our oldest is stressed with a fever or being in the hospital she starts to loose her hair as well. Our youngest ( who has TTD as well) does not...
Yes, my brother did lose his hair after having a high fever once. Also, he lost some when he had the chicken pox. For those of you who haven't experienced...
Hairloss is one of the common features of TTD , Sammy-Joe experienced this for ten years of his life , he still often will lose hair after a high tempreture ,...
