Great to know someone locally. My husband is retired Navy, and we're here permanently. Walter Reed's Ped Neurology Clinic gave us James' diagnosis 18 months ago. Col Erickson has been great referring us to specialty care primarily at Hopkins but also other places we wanted to go. They don't see a lot of Duchenne cases and, to their credit, have given us free reign to go to doctors who do. Feel free to email me directly at firstname.lastname@example.org to chat more.
i might still have it somewhere but what I did was get a letter from Jacobs peds DR stating that we should remain here at Ft Drum to allow Jacob to attend Cincinnatti Childrens. We could have gone to a base in Kentucky that was closer but we asked to stay here. We had to put in a 4187 and we had command support which helped out also I submitted a letter about what Duchenne was and the New York Times article that talked about Cincinnatti Childrens. That was pretty much it and they approved it. I hope that helps I will try to track it down if I can. Good Luck with yours if you do submit it.
Thank you so much for your generous offer of your son's chair. I am still working away at the state of California to get Nicholas a chair, but your never know - he may really need it before they come up with something and I might take you up on your offer! The problem is we don't qualify for much in state funding, and our insurance doesn't cover any DME at all - we sort of got stuck in the middle. I have asked our MDA office if there are any loaners, but haven't heard back. Since Nicholas can still manage okay with the scooter for now, I'm crossing my fingers that he holds out for a while longer (the longer the better!). What kind of chair does you son have and do you like it - did you look at any different ones that made you decide on the one you have?
Your family is lovely and you are very kind to offer me help. You must be a strong mom to handle three kids, two with DMD, and have your husband so far way in Iraq. God bless your family, and thanks to him and all the troops who put their lives on hold while they serve our country! Best wishes and take care,
How long has your son been in a wheelchair. Right know the only biggest issue we have is with my son's behaviour. We found out about my son in June. I hope your son does ok with his surgery I'll pray for your family during this hard time.
Yes I started to work, so I have been working the 10pm to 6 am shift, they worked my 6 nights straight, I was so tired Sunday and Monday all I did was sleep. I think it would be great to get together again.
How is school going for you? The kiddos are doing great, other than Justin I had to pick him up from school yesterday, he wasn't feeling well. Jenne is doing great, and Doug is really helping me out alot with dinner and all now that I am working.
I think of you and your kiddos everyday, and wish I could help in more ways. How is Chad? I will talk to you later.
How are you doing? We are doing well My husband is due home next month. YAY How about yours?
We jus got orders to Ft carson So I am currently freaking out mildly. I really do not want to go right now. I talked to my Father and he said that if we go my husband will deploy about 2 to3 months after we get there for another year. ANyway enough of that whining lol. I guess we will cross that bridge when we come to it. How do you guys like it down there? Its getting cold here already. Did you guys get any of the Hurricane weather? Ironically enough we did last night who would have thought right.
Thanks for your comments. My heart goes out to you with two boys going through the same. Yes, this disease is so unfair and the worst of it is that we are totally helpless and cannot "fix" it. Liam's got exon 48, 49 & 50 missing. At this point, we don't know if it's Becker or Duchenne. I lean towards Becker because of the fact that Liam is nearly 9 with very few symptoms other that being slower than his piers when running. Liam does not present with Duchenne, but until a muscle biopsy is done, we really won't know for sure. I still look back with a very critical eye and see no signs that would lead me to even think of DMD - even knowing what I do now, I would not have caught anything. Liam even went to a ped. neurologist last summer who never thought to even run blood tests. My fear is that our current doctor, RObert Leshner, at Children's in DC, has just lumped Liam in with all his patients. Yes, the decisions are left up to us as parents - even the brunt of the research must be done by the parents and put forth to the doctors. And, I fully agree with you on the quality of life issue. For Liam, to be confined to a bed and be kept alive with tubes and wires is no quality of life at all, but if there is something worth fighting for, then we do. I was very hesitant to put Liam on Prednisone because of the possible behavioral changes that can occur in some boys. If Liam does not remain the Liam we know and the drug changes his personality so much, I will stop it in a heartbeat. But for this first month of it, he seems to be tolerating it very well and is still the same kid, just a wee bit more excited. I see NO other changes in strength - absolutely none. Last summer, Liam could not do a sit up, although he ran like crazy, just slowly. Nor could he jump with two feet more than a few inches. Now Liam does sit ups and jumps more than 20 times in a row. All this was done with out steriods - pre steriods if you will.
Liam has gotten stronger during the past year - before we even realized this was MD. That is what I certainly do not understand. Liam is strong, goes up and down stairs without a care in the world. He runs, jumps, rides horses, swims, creates obstacle courses in the back yard to do and rides a bike with training wheels. I just don't get it. We have thought many times about switching the the other steriod and will probably do so at the end of this month because it seems better for the heart in the long run and fewer side effects than Prednisone. If we do switch and notice anything negative or adverse, we will switch back to Prednisone. I feel confident, at this point, Liam can benefit from these drugs, but, like you, if I see no reason, they will be stopped right away. I have also done tons of research on other therapies including green tea, curcumin and others supplements. We will try anything that doesn't cause adverse side effects - anything that is evidence-based. Liam, with regular exercise, OT and PT - along with riding and swimming, is doing fine at this point and I just have to think about these drugs because I do not see the physical strength improvement - they may be helping in ways that are not apparent on the outside. I just don't know.
You are doing what's right for you and your children and in reality, quality of life is the ultimate in importance. I admire your strength in so many ways. I did just read about the twice weekly drugs in higher doses instead of the lower daily dose. Did you find this to be beneficial for you boys?
Well, your boys are lovely and give then perfecto hugs from us all here in VA.
I'm new to this place and read a few of your postings. Would it be O.K. if I ask you a few questions? First of all, your sons are beautiful, or should I say very handsome!!! My son, Liam, was just diagnosed last month with DMD/BMD at age 8.5. You wrote that you thought it was great to catch the MD early so all the protocols could be started. Your first son was three, right, when diagnosed? What symptoms did he have or what lead you to this diagnosis? When Liam was 5, he had no symptoms at all, we took him to a ped. neurologist last summer when he was 7.5 and that doctor told us not to worry that Liam had motor apraxia. He saw no signs either - that or he was total idiot. Last month, we say Dr. Leshner and had the DNA testing. Liam is missing exons 48, 49 & 50. Liam's OT says she is looking up all sorts of stuff that will help her help Liam. She says that she has NEVER come across a kid this age with DMD that gets stronger. Over the past year of regular exercise at OT, Liam has gotten so much stronger. Last summer, he could not jump very far with two feet, he could not get up on our climbing wall, he could not do a sit up. This summer, he can do it all. He has only gotten stronger over an entire year. He is now is riding horses in addition to taking private r therapeutic riding lessons. He's got tons of energy. But now that we actually have a diagnosis, I see the gower sign and the fact that Liam is slower than his peers, but when we look back, we see no symptoms that would have even made anyone think of DMD. He was never a floppy baby, sat up at 8 months and was was walking on his own by 15/16 months. He would actually walk at nine months, but would not let go. He never falls down, then or now and is a very bright third grader. I see that you say, it's better to catch it early, but could this disease be more benign if the symptoms show up later on??? I hold on to the fact that Liam had no chartable signs of this horrid disease until age 7. I know we cannot compare children as the progression is different in all boys, but from everything I ready, Liam's case must be mild. I just want your thoughts. Have you ever thought of usinf the other steriod that is not FDA approved yet? Do you gove your boys any herbal supplements like Green Tea or Curcumin?
This disease makes me so mad and sick, but I look to this exon skipping and how it's right up Liam's alley.
Thanks so listening.
Avery IS a great name. :) How ironic that both of our DMD boys share the name. I believe there is actually another boy, my son's age here on PPMD who also shares the name. How strange considering it isn't that common of a name.
Yea, we got two labradors for our sons. One for each. They both will go in for professional training in a few weeks and when they get a little older which ever one impresses the dog trainer the most will go back for more intensive training. He will be the "accessable" dog who knows how to be Alexander's helper. Right now our dogs are roudy puppies so Alexander doesn't interact much with them because he can get knocked down too easily.
I have to say I don't think 2 hours to put training wheels on a bike is really long...at least it takes my husband that long! So, you didn't do too bad. Anyway, I have a wonderful friend who constantly reminds me not to forget how many things I/we really do well under the circumstances. Don't forget to give yourself credit, you Linda are doing an amazing job of it!! I would have crumbled under your stress and there you are moving right along.
I'll heed your advice about the one day walking and the next not. My son had a lot of decline so far this year, still walking and "running" but not as good as last year. I can imagine the final steps suddenly hit. Fortunately we already have a scooter ready, waiting in the garage. God, I hope he never has to use it permanently!!
What a relief...having your husband home...if only for a couple of weeks!! Sometimes I can't make heads or tails about the so called reasons our country does such things, like keeping your husband in Iraq when he should be home for good.
Oklahoma City is where my husbands mom was (she is deceased) from, he still has family there. I am not familiar with OK geography, are you close to that?
I don't know what I was thinking answering you on my page. DUH!
Anyway, that is great that your husband is coming home, I wish it was to stay for your sake. It must really be hard with him gone.? I was alone with the kids for about 7 months that was with everyone and just me. I was dead everynight I went to bed.
We are getting a new Hoya lift, when we get it, you can have this other one if you want. I will show you how to work it. If you need help moving let me know, I will come over and at least keep the kids busy!
My boys had their last game tonight, and now we go to the banquet tomorrow night.
I can imagine, and do. Sometimes it interrupts my sleep. Remember, having a vac for chicken pox doesn't mean they won't get it if exposed, mine did. It seems we DMD parents are never out of danger, watching...always watching...
How do you manage to have a minute to yourself?