Started this discussion. Last reply by Ian Anthony Griffiths Jul 14, 2010. 16 Replies 0 Favorites
I ran into a gentleman over the 4th and we presumed to talk about Trey's diagnosis, and he asked me a simple question that I don't know the answer to..."What are the medical charges associated to…Continue
Started this discussion. Last reply by Clare Harper Jul 27, 2011. 6 Replies 0 Favorites
We are starting Trey out on Steroids today. He needs to be at 15mg a day. Doctor special ordered us 5mg tablets... Does anyone know if there are any contraindications to spreading out the tabs…Continue
Started this discussion. Last reply by Cori Apr 6, 2010. 3 Replies 0 Favorites
Can anyone tell me if they have had any luck getting military to pay for Deflazacort? Trey (now 5.5) is starting on steriods on Friday and the doc said she wouldn't have a problem with Deflazacort…Continue
Started this discussion. Last reply by Christine McSherry May 18, 2010. 13 Replies 0 Favorites
Things are a bit...well chaotic around here right now... HOWEVER, we have a school doing a fundraiser for DMD research. We are doing an assembly for the children (k-12) explaining DMD, BUT they are…Continue
Posted on February 21, 2010 at 3:30pm 6 Comments 0 Favorites
I don't know if any of you have heard of this but I thought I would pass on... CureDuchenne (website: cureduchenne.org) is having an annual 2010 Climb to Cure Duchenne, Pick your Peak on June 19th and 20th.
I know that many of you will not be able to participate due to various reasons. And I know many of you may be particularily fond of just supporting PPMD, however our money all goes to the same place, right? To cure…
ContinuePosted on February 21, 2010 at 2:46am 8 Comments 0 Favorites
So I don't know where to post this, so I am hoping if I post it here many people will see it...
Okay so our son Trey has a deletion of Exon 52 which we found out about while I was pregnant with our daughter. After having our daughter I was genetically tested and found to not be a carrier, but the genetisist did say that there is a small possibilty of Genetic Mosaicism.
Now 4 months after having our Daughter I get a call from my OB doctor stating that she is…
ContinuePosted on November 5, 2009 at 3:35pm 19 Comments 0 Favorites
Posted on September 15, 2009 at 4:19pm 10 Comments 0 Favorites
© 2023 Created by PPMD.
Powered by
Badges | Report an Issue | Privacy Policy | Terms of Service
Comment Wall (27 comments)
You need to be a member of PPMD Community to add comments!
Join PPMD Community
Hi Cori,
Just wanted to wish you and your family a very Merry Christmas and wonderful New Year!
We are all doing well- hoping we can move to California once my husband finishes Law school and takes his exams. Hope all is well with you.
:) Nana
Saw that you are beginning steroids with Trey. Just wanted to let you know we are thinking about you. You might already be doing this, but we found keeping a behavior journal along with the dosing of meds to be helpful to sort out some of the side effects. We have been trying alternate day dosing deflazacort to reduce behavior side effects since August (research outcome is very mixed, but we made our peace with it) Charles's behavior improved significantly, he has continued to grow, and overall the docs and therapists feel he is maintaining his strength well. I would be interested to hear how spacing low doses through out the day works for you.
Blessing to you :) Nana
Yes, Seph is on HgH. I give him the shots every night. I can't say he loves them, but he is used to them. As for side effects? Well, he has grown 4.75 inches in 18 mths! He turns 8 today, so he now looks about like a 6y/o. He was at the 3rd percentile when we began them and that is why we tested him. He was specifically tested for growth hormone and his is/was normal. BUT, due to his stopping growing b/c of steroids, the insurance went ahead and approved growth hormone. We are about to change insurance, so I hope there is not a problem with the new company! UGH!
We hae not seen any negative side effects. I know one boy who was on Hgh and it caused fluid retention in the brain that caused severe headaches and pressure on his optic nerve, but they were on it quickly and got him off the shots and he was fine. That is a VERY rare side effect and happens pretty quickly if it is going to.. m ost of the boys I onw on it have had nothing but good results.
Good luck if you pursue this. I know that dr Wong won't put someone on it until there is pretty significant delayed growth....you may be there??? who knows!!! Good Luck!
How is Trey doing? I remeber talking to you at the time of his diagnosis and you were moving, changing schools, having a baby. I hope those things have all calmed down alittle and you can focus on raising your babies.
I hope you have a great day today, give Trey a hug from Wyatt in Washington.
Love, Melissa
So good to hear from you. I completely understand- we are a bit overwhelmed ourselves trying to figure out the next level educational support we want for Charles. We finally finished Charles's neuropsych exam which classified him as very "exceptional" Gifted, ADHD, LD reading, LD Math, R/O LD writing and of course DMD. The neuropsychologist told us he didn't think the public school would be able to meet his needs and advised us to try and find a special school that specializes with Gifted Children with learning disabilities and push the school district to pay for this. Interesting enough I did find such a school- but they are not in an accessible building and would require Charles to climb stairs! Tuition $33,000/year!
Anyway I am now looking into specialized tutoring programs for kids with "learning differences" to see if any can help us. We will also be starting ADHD meds with Charles if we can get "cardiac clearance" Cardiac eval is sceduled in Feb.
How is your baby girl? The word Insane doesn't seem strong enough to describe all you must juggle every single day! I'll definitely be praying for you and your family.
More later,
Nana
PS. we did have a good holiday :)
I will get you some information in a few days...My schedule is a bit tight right now. I won't forget you. Please e-mail me at brian@parentprojectmd.org so I have your address.
Best regards
Brian
View All Comments