It's been a week. Wanting off the DMD rollercoaster. We did finally get everything worked out with starting the OLE. We leave Monday for morning for our first trip. It's just paperwork and baseline testing (since it's been more than 90 days since Sam's last dose). Next week he gets his first dose. We have to be there Monday through Thursday for all the blood draws after. Going to be missing lots of school, which I hate, but they're being really good with it and keep Sam caught up. Did you see the FACES meeting for this Sunday was postponed?
Mindy - I found this while searching some stuff... I wanted to post it to the Washington Discussion Group - but didn't want to join the group. So I wanted to forward to you and ask that you post it. Folks might find it useful (and its free to those in WA). http://cshcn.org/care-notebook-and-care-organizer-order-form
I read your post about worring about your son looking like an 8 yo later on if on steroids. Our son Jacob has been steroids now for 10 years. He is 17 1/2. He walked until he was 15 1/2. When he went on growth hormone in addition to growing to 5 ft and losing wt he also lost the cushingoid sx such as the puffy face. He is also on a testoserone cream and is now in puberty...ie growing chest hair and facial hair. He looks much older. He is very glad to no longer look like a 10 yo. He is also been able to stay on deflazacort with its benifits. I don't get on this site often so feel free to email me at firstname.lastname@example.org if you have ?s.
1 2 3 Magic is a behavior program for parents. Most libraries have a copy. I like it because it focuses on how to communicate with kids. It is used with kids who have disabilities too. It seems to work pretty well, but isn't as strict as time out. It doesn't always work with him, but it does stop aggressive behavior. They should sell it at amazon too. Worth a shot.
We face behavior challenges often with our son. Sometimes it's anger or outbursts. It's especially bad around a transitions or changes in schedule. It's really tough to be patient. I try to use 123 magic, but sometimes it doesn't work.
Hi - I do know what you mean. The predisone causes the bloating and weight gain in most boys. The deflazacort has the same benefits with less side effects. We order it from Masters Marketing in the UK. That is why we chose it...it took us a year to make the decision. I know it's a hard one. Austin is doing great. He is 2-1/2 and talking pretty well.
fyi - Did you do IVF or PGT recently? I saw posts to you on that? I did PGT/IVF in Sept 06 and no baby. We tried again 3 months later and had healthy twins (boy/girl). Good luck.
Mindy, Roy and I plan to go see Darius at the 1 pm time. He is just finishing his 100 days off as a MS contractor. Not being a "real" MS employee means he is not included for most of their perks, which he would enjoy. If not for his DMD he would surely be there as a FTE. Taking 100 days off after a year of full-time is really helpful for someone in his condition, but now he is ready to try to go back. It will be a totally different job as his former group has disbanded. So, he won't be bringing any matching donations.
Yes, my sister graduated from Sammamish in 1965. I went to another school, but moved away after I married. I now live near my first school which was a 4 room brick structure, grades 1-4. If you were any other grade you had to ride the bus a few miles. So, we are back to Bellevue, but boy have things changed!!
Hey Mindy--we plan on going to see Darius at my sister's old high school. I hope we could meet there.More and more Seattle-area dmd moms are making their presence known here. I would love if we all could meet!
Great to talk to you. Hope I wasn't giving you too much info, too soon!
Older son, Scott, has deletion of exons 3-7. (I have to research this.) Brian & I want to be tested, too. Can't remember what you said about Aidan's results.
Forgot to say that for a couple of years, we had a camper and belonged to the same weekend camping group as my in-laws. Once a month we drove to a different spot in CA that was only 1-2 hrs away...that was a GREAT experience for all of us. A lot of "grandparents" around which was nice, but we camped at the beach, the mountains and the desert. Hiked...walked...played in the sand...took pictures...and relaxed one weekend a month...sometimes one night, sometimes 2 nights. Dinners were always pot luck. Good recipes, too!
Take care, Laurie
Hi Mindy. My 28 y/o son and I live in Bellevue also. He went to CWU and has worked full-time for a year with that large Redmond company we all hope will not lay off too many more! He is a contract worker, which works best with his DMD, and will be looking for another job soon. I know my son is much older than yours, but that means we have experience with the problems/complications of DMD.
Your son is a cutie, but it seems that all our guys are special miracles. Ann
Hello!! I see that you had IVF/PGD Where did you get it done? Was it expensive? I am not a carrier and my son Cade is , my husband and I want to have another child, which in Columbus they said that I have less than 5% chance of having a DMD baby, but the more I read, the less that I believe that. They also told me that it was around $18000 to get PGD which I can not afford. Any help would be appreciated. Your little boy is handsome!!
Hi Mindy, I just read that you went through PGD/IVF. We are starting this process this month but I had a few questions. Were you able to test for other chromosomal abnormalities or did they just test for the DMD. The place here in LA said they can only do single gene testing and see the sex but cannot check for other things like Down's. I just wanted to here from someone else who has been through it.Feel free to email me email@example.com