Both of our girls had the scales on the scalp up until they were about 4 or so. Everything we tried seemed to make their hair nasty, until we had the odd...
Hi Shelly My son Jake is almost 7 years old. At this time as far as we know, he also has the non photosensitive form of TTD. He suffers the same issues as...
Kelly MacLeod
kmacleod@...
Aug 2, 2007 1:44 am
1696
Hello Mark, My daughter is also 2.5. We still only have a "clinical" diagnosis, and had to have a DNA test sent to Canada (We live in the Florida, USA). Her...
Shelly, I have two children, a boy and a girl, with non-photosensitive TTD. They too have the dry scaly scalp but their hair is short, dry, and brittle. What...
Thank you so much! I've often wondered if even though she does not have the severe reactions to sun that some of the children with TTD have, that if she still...
Hi Shelly Welcome to our group, I have a 10 year old daughter with TTD, Madeline tested negative to photosensitivity however we were told she was sun sensitive...
... Florida. ... hair began to grow really well. I use Head and Shoulders which is an anti dandruff shampoo and a seperate conditioner, Kelseys hair is now ...
Hi Shelly, my son James is 10 yo & has the non photosensitive TTD. When he was younger he was unable to go out in the sun for long lengths of time but as he...
Thank you everyone for the welcome and the advice. We've been using Derma Smoothe, but I hate to use it every day because of the steroids. The olive oil seems...
Hello Everyone, Sorry I havn't posted for a while but Kelsey has been having a really hard time recentley. We are nearing the end of the Summer Holidays here...
Hello Everyone!!How is everyone doing?I have not been on in a while because been moving to a new home.Had to have a new bigger place because of the new...
The Mentor Cyclones (my younger son Kyle's baseball team) had their end of year party a couple of weeks ago. We were honored to be the parents of the 2007...
Hello Kirsty, Kelseys Mum here. I can honestly say that Kelsey getting a gastrostomy six years ago was the best thing for her. I know every child is different...
Hi Kristy can Matthew eat orally because I am not sure why they would give him the peg if he can eat , they maybe need to give him growth hormone or even...
Fay , its been the same for Sammy-Joe , his life was saved because of the peg and it really isnt that bad once you get the hang of it , its just overwhelming...
the most rewarding thing about our children is seeing their faces light up when they have achieved something new and been acknowledged for it all , I am very...
Tammy, Sean must be SO excited! Trophy's are so important to young children, and getting one when it is not expected is great. Those coaches ae special...
THAT IS WONDERFUL!!!! It brings tears to my eyes just thinking about it!!! Thank you for sharing!!! I know that Collin doesn't understand it but when he got...
... previously. Should have said before. Kelsey only had the tube peg for about 18 months, then it was changed to a low profile 'cubby button' which is a small...
Shelly, ?WELCOME!!! I am sorry that I have not been writing in a bit! Things have been crazy this summer. I have a son Collin?that is seven that is dx with...
Hello Dear Friends, I am Sunitha. My 4 year old son Yashas who has TTD, is doing good and is attending preschool. He has now started walking and is doing quite...
Sydney has had a g-tube for almost 4 years. Yes she did get a serious infection at the site prior to us knowing that she was IGg deficient. She is now on IGIV...
Hi Sunitha My son Jake has seen an Endocrinologist, once, and they have told us to come back when he reaches adolescence. He is going to be 7next month. He has...
Kelly MacLeod
kmacleod@...
Aug 21, 2007 10:19 am
1717
Hi Sunitha, my son James has been having growth hormones for 5 years. He is treated by Dr Neville Howard at Westmead Childrens hospital in Sydney, Australia....
Thank you so much. I think you're right...now that her scalp is doing better (thanks to everyone's great advice) her hair is growing in so thick! Trust me,...
I was wondering how many patients are known in the world with TTD. And are there any known patients from Holland. If so, I would like to get in touch with...
Hello Mark, I remember some doctors mentioned a girl suffering from TTD a few years ago in Holland, but nothing more. On our side, we are not that far from...
Hallo Mark, we are one Family from Kosovo .our daughter Lize (4 year) having TTD PIBIDS syndrome .She became diagnose FRom Doctors in Holland .if you like u...
Hi All My 6 1/2 year old daughter has TTD, she was diagnosed at 8 weeks old. I have a question regarding sweat. Does your little darlings sweat? I was...
Ho Megan When Sammy-Joe was little he never actually could sweat , but now that he is eighteen he does swear alot , the doctors asked me the same question , I...
