Well,where to start,lol. He tries to ram people with his wheelchair,he throws things and started spitting on people. Then there is alot of verbal abuse he calls names and says very hateful things.It is very hard to deal with him the school is always calling me.We try talking to him and he also takes prozac for depression and anger also he shows signs of OCD an Tactile sensitivities.It has been so hard to deal with because I just want him to be happy and enjoy life but he can't when he gets so angry so often one thing can set him off.We have him in art therapy now,just stopped seeing a pyschiatrist no progress,I wish I had an answer on how to deal but I don't we just go one day at a time. It must be very hard for you him having autism ontop of the DMD,one main reason coy was never on prednisone was because his anger issues were already bad and we didn't want to make it any worse. Good Luck, Jessica
hi amanda..im sorry to have taken so long to reply, i don't get a chance to get on here like i would like to. my son avery has been in his chair for around two years. matthew my other son is still walking. its nice to meet you. i know its got to be so hard...i remember what it was like in the beginning.
Hi Amanda, I hadn't logged on in awhile, it's good to hear that it's finally getting warmer for you all. This week has been a bit hard. Dylan should have turned 1 yrs old on March 11, so it's been a bad week so I really had to log in this week because although family and friends listen and try to understand they just don't. Thanks for all your support and I pray everyday that a cure is soon found.
The vent issue doesn't offend in anyway.
It looks like you made it to "Give Kids the World trip." We have been their two times already. and the Disney trip is great for the kids but boys was I tired after the fact!!!!
I glad you made it
Well sweetie, they had an older brother with DMD so they kinda knew what was coming. But getting the power chair is what made the difference. I make them feel like they are driving before any of their friends will. I put flames on the fenders and I pimp it up, which makes them feel like it is their car. I will send you some pictures if you would like for me too??? How old is your son at present, and has he been in a manuel chair?? I will be glad to help you in anyway I can.
I don't know if I helped you, but I hope so. I tell them I hate them too, but at least it is a cool one, not one that old people use. He will find out that all his friends will think it is cool and they want one, I am not kidding you. All the other kids want one.
I just realized I didn't address one of your questions about the Prednisone. Bobby hasn't had any behavioral issues while on it. He does sometimes get really sad and cries - but usually something has tipped it off but it doesn't last. We have been lucky - he does very well in school with no issues outside of the normal realm of things. Have a great trip!!
Amanda - I am glad to hear that you were able to a calcium supplement for your son. That sounds like the same one we give Bobby. Have you talked to a nutritionist? With all the dairy Bobby consumes, along with the multivitamin with extra calcium and the calcium supplement - Bobby is actually getting lots more calcium than is required. And they say it won't hurt him. I hope you have a wonderful time at Disney - that is where Bobby chose to take his make a wish trip to as well. Are you staying at Give Kids the World - that is the most amazing place I have ever been. Take care and enjoy you trip!!!
Hi Amanda, am glad to hear you all had a great time, we did as well. It was a hard day for us,but we were able to have a nice time after all Dylan would want us to. So thats how we handled our day. We have a cold front right know no snow in Miami and thats a good thing for me since I dont like the cold weather. I have just been really busy with school. The semester is almost over so everything is due. Thats why you hadn't heard from me. So have a goodnight and hope to hear from you soon.
Hi Amanda - yes you can find vitamins with extra calcium and Bobby is on a calcium supplement that is 600 I believe. He probably gets more calcium than he needs, but it doesn't hurt either. The DMD does effect bone density in that, because the boys don't play like other kids, the bones never have a chance to rebuild themselves since exercise like running, jumping and climbing all cause the bones to wear down and rebuild. Then the steroid use doesn't help the situation much either but we are doing what we can for Bobby. If you ever need to talk or anything - let me know - I find that's the best thing for me. Take care. ~Debbie
Oh no am sorry to hear that, what did the doctor say was the next step with osteoporsis, did he give you meds for Damien. Sorry I didn't get your message sooner I have been out all day. My car is still at the shop so am basically on my mother-in-laws car. What is prednisone is it a med. See Dylan was so young that all I know is that he took alot of meds and I had them written down, but I have blanked them out.
Hello Amanda!! We Just found out in June as well. Actually on his 6th birthday. I have a great support system, however I really can not seem to get out of the funk and back to reality! I am very emotional and depressed most of the time and that really is not my personality. When did you find out your son had osteoperosis? We go down to Columbus for a bone scan tommorrow to find out Cade's bone density. Is you other son OK? Are you a carrier? What type does he have? May god be with our boys and find a cure real soon!
Was glad to hear that your son was somewhat better. I could relate with you on the meds. Dylan was on quite a few and he really really had very low muscle tone and it was very hard for him to get it out.