I have a 4000 dollar pair of night splints I will send you Caleb could not wear them he has sactile problems and they were not for him I have prayed to find someone that I could give them too. call me or give me your address and I'll get them to you asap. they will have to be adjusted to him. PT could do her is my #619 929 2427 waiting to hear Penny
We have a little boy Diego, who is 5 with DMD and he takes Deflazacort (Calcort) - 12 mg daily. We just arrived to Disney in Orlando,Florida and realized that we left his medicine at home!!!!!! I understand he cannot be without Deflazacort more than 24 hours and Diego does not have medicine for tomorrow. By any chance, is your son using Deflazacort? If he is can we buy or borrow any from you?? We are willing to drive and go anywhere to get the medicine and we can replace within 10 days guaranteed. Sorry to bother you wiht this! but are trying to avoid major interruptions for the boys and extendended family due to this...
Thanks for your kind attention to this,
Here is my email and phone number: firstname.lastname@example.org or (513) 765-9416
Hi Daniels Dad, we have not done hormone theraphy. Josh can still transfer due to be shorter so we are leaving him be. As far as the night splints have you tried shriners? Josh does not wear them and never has, he hates them and can't sleep in them. But they have made them for him in the beginning so I know they can do them.
Hi again! That's what i have heard about Nemours and the MDA clinics around here. I am very happy that we have decided to return to Duke. The doc there is very knowledgable about DMD, and we already have a rapport with him. After hearing you talk about the MDA here, I am very glad we made the decision to go back to Duke. After all it is Duke!!! I know what you mean about the drive north. We are originally from Michigan - the Detroit area. We still have tons of family there, so we have made the trek there several times since we moved away. I actually drove to Michigan from NC - by myself with both kids!!! CRAZY!!! I have a five year old girl named Sarah, and Ryan is three. I also have a 17 year old step-son from my husband's previous marriage.
My husband is a sales rep for UniFirst - a uniform rental company. He just sold shirts and bar towels to the new Golden Corral there. He has been in Palm Coast trying to drum up more business.
Maybe sometime we could get our families together. It seems like you've been through a lot of the things we're going to face in the future with our little guy!
I hope all is well! Talk to you soon! :)
It's so great to know there is someone else nearby. We are new to Ryan's diagnosis, and we are new to the area. We recently moved from North Carolina. We are finding that the MDA clinic here stinks!! They keep blowing me off! We have decided to return to Duke in Durham, NC where Ryan was diagnosed. In fact he has all of his appointments there this Friday. The Florida families group is located under "Groups" at the top of the page. Just go there, find Florida families and click join. There is also a great "Dad's Only" group. Funny that you're in Palm Coast, my husband spends a lot of time there for business. He's there today actually. Do you have any more kids? Keep in touch - and take care!!!
Welcome to PPMD!! We live is St. Augustine. How old is your child? We have a three year old named Ryan who was diagnosed with DMD in May. PLease join the Florida Families group!!!! Hope to see you there!