tyler is very much an outdoor kid. but is also very sunsensitive. we keep the sunscreen with us at all time. (right now i have 2 different types in my truck...
Hi Kimberly Sammy-Joe is the same, its hard in summer , he enjoys winter more butwe still have to measure the UV index , we use Hamitons sunblock on him the...
Its so wonderful to have the whole community involved , raising awareness sure has its benefits , everyone keeps an eye on Sammy-Joe too , they tend to see him...
Hello everyone: I am just writing to say hi, and to let you know that I have been thinking about you all. It is hard to believe that Megan has been gone for...
Hi Everyone, Â I am sorry I have been missing for a while. Collin still has LOTS of problems with the sun. He can be in the sun for around 15-20 minutes a day...
Dear Katie, I cannot imagine the pain you must feel, may God be with you and your family. Try to think of the good times on Saturday. Karen ... From:...
The Memory of Megan and her beautiful soul will live on forever in our hearts and through all the good that the fund will provide ,please know we are thinking...
What are the signs and symptoms of mesothelioma. Know the facts now. www.freewebs.com/themesothelioma ... Food fight? Enjoy some healthy debate in the Yahoo!...
This other website has been hit with a lot of spam lately. These members may not know about the TTD Support group - not sure who the administrator is. Hamish ...
Hi, we have a son with TTD, he is 10. James is doing well at the moment. Ask any questions you like we have all been in your shoes. Sharon, Australia _____ ...
Hi Rachel: My name is Katie, and I was blessed to have a beautiful little girl who filled our lives with so much love and joy for over 7 years before the Lord...
We went through 4 years of testing on our eldest daughter before we finally got a diagnosis of TTD. She was born 9 weeks early, so for the first 6 months the...
Rachel, Like Theo, Sean has also seen what seems like every doctor in the book since he was born. We ended up seeing 4 different geneticists before getting...
Rachel, I've noticed that same thing recently and was going to ask the same question of the group. Above and beyond that, you'll find this group extremely...
Thank you Tammy and Kasie! I'm glad to hear that you're still using this network and finding the connection to each other helpful. I have only just begun...
Hello everyone, I've been lurking the board for awhile, but just haven't worked up the courage to introduce myself. My name is Shelly and my daughter Evee...
Hello, Two weeks ago, we heard from the genetic doctor that our daughter has the PIBID's syndrome. I have been searching for information on the internet about...
hl shelly How are you ? Thank you for your email , Sammy-Joe also had that around that age and we were given many creams and oils to apply to the area , back...
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...
