What a handsome boy is Seph, congratulations. Like my Joaquin. we received the DNA test this month. We had arrange a meeting at CCHMC this december. we will travel from Peru. Any recommendation regarding diet and supplements are very well received. The local Dr. is suggesting us to start deflaxacort treatment, but he is 4 years old. at what time you decided to start?
We have had a pretty rough year since finding out that Josh has DMD. Josh is already using a walker, gained 40 pounds due to the prednisone, and is being casted every 5 months to help keep him walking. It just seems like it is happening all too fast! On top of it all I broke my wrist and elbow in April and doesn't seem like things are healing fast enough. It is all overwhelming and I feel like we are alone.... I know we are not but it feels that way.
Hi Lori.. It has been awhile since we last talked. My son Josh was diagnosed about a year ago at age 8 here in Shreveport. A lot has changed in the last year and I'm finding it difficult to cope with. I'm really in need of a friend who understands the emotional rollercoaster I can't seem to get off of. I hope to hear from you soon!
Hi Lori, thanks for you comment on the vitamins and supplements. Kevin is in prednisone and I am going to try and change this if possible. It was not an option a year ago, so will see when I visit the clinic again.
Lori, I saw that your son was on HgH, did they test him specifically for that, and do you give him shots every day? Just curious...our son is 5 and 1/2 and he is little (barely 7th percentile) and looks more like a just turned 4 year old...just wondering how you found out he needed it, what your experiences have been with it? Side effects, the good things you have seen since starting him on it? Just whenever you have the time and thank you so very much!
Hope ya'll had a wonderful Thanksgiving! Guess what? My sisters are married to Hall's (Myron and Darayl) and are kin to Alvin Hall! Nathaniel is doing well. Stays glued to video games until I get him off. We set up his Christmas village yesterday. His sister and I did the work, he was the director and made sure we did it right. Pulled him away from the video game long enough to put 3 ornaments on the tree.
My kid (5.6 years old) was recently ( In AUG this yera) was diagnosed with DMD ( exon 46 to 50 deletion).My mail is firstname.lastname@example.org. I am in touch with certain members of MDEX (http://www.mdex.org.uk/) to understand what exactly is required in our kid's case.
Nice to meet you Lori. I'm new to the web thing so hopefully my comment will get back to you. Yes, my son Nathaniel age 12 has DMD. We've been living in Ethel about 12 years now but don't know many people. What are some of your families names?
Hi Lori - I just love your photos of Seph. Just wondering how he's doing and you all 2! Will says "hi Seph and that he misses his friend. Oh, Will wants to know what Seph's dog's name is....Will has been on us to get him a dog....Char