I came across your blog. If i may ask how old are your sons? I have 2 sons with DMD, aged 2 and 3, they are very different and i am sure that they will be affected differently, are your sons very diffrent ?
Hi Brian, I do not doubt the fact that bone development and growth are related to DMD. There are several studies one looking at more than 100 boys showing that they are shorter than their siblings. However, they are not as short as the boys on steroids. We all know that stunted growth and osteoporosis are side effects of the steroids, no one doubts that. The point I wanted to make is that having a boy as short as the boys today, after years and years of steroids, can easily make them obese. On contrary, if my son is 5'6" due to DMD and not 4'6" due to "DMD+steroids" (I am 5'8" and my husband is 6'5") he can easily have a normal weight for height. Obesity causes many other problems not even mentioning the cardiovascular ones. Steroids are the gold standard of care because we do NOT have anything else to compete with them. Every doctor I talked to agrees with the fact that they have serious side effects and that we need to find a replacement therapy minimizing these side effects if possible. I am sorry that I cannot accept the status quo and blame Duchenne for every single thing that makes my son different. Some things are related and some things are not. I am not going to ignore the serious side effects and just say that it's Duchenne. The fact that we do not have a better alternative does not mean that we should just say, it's fine, he would have been shorter anyway due to DMD. He would have been shorter but NOT as short, not overweight, insuline resistant, puberty delayed or having bone density of a 80 yo woman at age 10. I also do not accept the fact that we are told that height does not matter, as they lose ambulation anyway. I guess I still hope that the future will be different and at some point during the next few years we will not be told that it doesn't matter and we will have better alternatives. And don't even get me started about the fact that many parents tell us from the start that our boys will have cognitive problems. I lost the first years of my son't life searching for these problems, thinking that he should have some. My son doesn't have ANY of them. Neither do many of my friends sons. I think that it is time to look at each of our boys individually and not try to put them in the same bucket only because they have Duchenne. The fact that they have a certain mutation in the same gene doesn't mean that they will be similar in all aspects. I think that it is time to tell parents of young boys that they can excel academically, have friends, develop just like any other non DMD boy. My son and many of my friends sons are real proof of that. Ofelia
Hello, myname isJeffersonandDMDhave, as I doto be able totalk to you?Excuse myway of speakingbut I needto talk tosomeone who canhelp me.I amnew to thisnetworking site anddo not knowhow to use itperfectly.
Brian, All studies I looked at suggest "shorter" stature (some suggest 6 cm shorter than non DMD siblings, others -1 SD etc.) but not to the level where the boys fall off the charts. Almost all DMD boys today fall off charts after a certain age. The studies also note that GH deficiency is not Duchenne related, neither is delayed puberty or insulin resistance. I am sorry to say that I still do not believe most of the things mentioned are due to Duchenne itself (the data does not show that) and we certainly do know that they are steroid side effects. I think scientists should focus on approving a replacement to steroid treatment (Eric Hoffman's company is "working" on one for a while now) so our boys can have average height and normal weight. There is a big difference when you have 140lbs on a 4'6" frame vs. a 5'6" frame. Obese vs. normal weight for height.
I hope you and your family are well. I lost yours and a bunch of other email addresses when converting from one system to another, so I wanted to leave a quick note to see if we can catch up briefly before the Connect Conference. The interview study has come a long way since the last conference, and if you have a few minutes I can send you some notes on ideas I'd like to emphasize in the talk I'm giving this year. You can email me at firstname.lastname@example.org.
Without seeing Caleb most doctors will not comment even hypothetically. If possible make an appointment with Ron Victor at Cedar Sinai in LA. Some doctors have more experience in DMD. It is sad your current doctor's staff are being strict "gate keepers. Caleb may need monitoring
to learn/know what is going on.
Brian I need alittle help here. Ca just does have a good community for duchennes yes they have Drs who are great in their field however not thejourney our boys are taking Caleb age 10 is having troubles with heart beats he comes to me feel my heart what happens is it jumps from 55 to 120 and goes back and e something different why would I you are not up on the duchforth his lips are colorless it lasts 5 to 15 mins ok on with heart montor called in ou say that this boy is scared ok dr said we can do the test again well unless you havtwo events but the tec. said do not call the dr as this does not fall in the numbers the dr wants so I call the dr who says tell me not to worry its nothing so I ask why would I you said not to worry in Fla a family said they start on mrds at age 10.the cardo Dr is at childrens in san diego what do I do where do I go help me please Penny
We are leaving Monday for our trip. I learned that there was a lay over in Atlanta both ways so I was even more concerned about the chair. I ended up contacting the MDA here and they in turn contacted MDA in NYC. They found us a loaner power chair that they made arrangements to drop off at our hotel and then pick up after we leave. My son would rather have his own chair as it has elevated and recline but for a week he'll make due and it gives us peace of mind.
In a post some time back you mentioned that you don't take your son's power chairs when travelling. I wondered why? We are going on a trip to NYC this summer and he just got his first powerchair in March and wanted to take it on his trip. I started to worry about how it would be treated by the airline personel? I assume they take it and store it with the luggage. Being that they are so pricey I would hate for it to get damaged.
Hi Brian, we have not been on this site for very long and you are the first person that has help us with understanding this DMD. we have read most of you store's and we can see a bit of our self's in what you wright. thank you for your info. hope to chat to you real soon Tina & Darren Harris .
YOU ARE AMAZING!!! Thank you SO SO SO very much!!! I haven't had the chance to read through it all with having Trey and all his appts and schooling and having a 3 month old and Daddy leaving for deployment, but I am looking forward to finishing it! So far it is explaining alot and I as well look forward to sharing it with Trey's amazing IEP team!
I know you have no clue who I am, but Jenn (sorry don't know last name) referred me over to you as you are a specialist in helping our boys learn =)...thank god for you!
Our son Trey is 5 years old...he is very smart in the fact that his long term memory is quite amazing, has a great vocab, etc...we however are having MAJOR problems getting him to string things together, mainly the ABC's and 123's...its like he goes ABC all the way to N then skips right over to XYZ... or goes 1234589...the stopping point is always different, so I know he knows the information just can't get it strung together... Have you ever heard of something like this? And if so, may I ask what you did to help the child with it? He's got Speech Therapists and we have enrolled him in a private school, has OT and PT, and no matter who tries to help him with this issue no one is able to get through to him...
If you have any ideas you would be a blessing to our family!
I thought I read something from you a year or 2 ago where you metioned you had written a letter to insurance to help you with care outside of your state. was it you? and if so, do you still have that letter?
Hi Brian, I was told that you were the go to person for school related issues. I'm needing an aide for 11 year old at school and his school has no idea how to go about doing this. They've said they have never heard of it but that they would see what they could do. I know I need an ARD meeting so that I can request what my son needs but what do I need to tell the school? Hope you can help..thanks so much!
We live in Southern California. My son Ryan is 6 got diagnosed in Jan 09. We asked for an IEP for him. In that IEP in March the dist allowed PT He is doing great academically. . In april (27-30th) we went for our 1st visit to Dr wong. She wrote a prescription and a report recommending Ryan to use the mobility scooter at school which he already has as the campus is big and he does a lot of walking. At the next IEP on May 6 even after providing them with the prescription and report the school has denied the use of any mobility device for him due to safety concerns. We asked if they could provide a non mobility device for him as the campus is big and they did not answer. Since Ryan is active and walking fine they do not see the need for a mobility device. What do we do next? Give suggestions please as I am really concerned and want to be proactive in preventing muscle damage.
Hi Brian - Hope you are well. My husband, Will and I met you in at a conference about 4 yrs ago when our son, Alex was first diagnosed. Alex is in 3rd grade and doing pretty well. You presented on education (IEP/504) Alex has been on an IEP since kindergarten. He just recently had some testing done and academically he is doing well. He is slow in math but otherwise fine. Anyway, we got a call today that they are auditing all kids on IEP's and Alex may only need to be on a 504 due to he has no learning disabilities. I think the financial crisis and the CA school problems have started this audit.
We have Alex's IEP meeting in 2 weeks and they are requesting a letter from a doctor or other professional (OT, PT, MD) who is knowledge of his physical disability and current health status to report in the area.
(need to re-evaluate the relationship between his health impairment and his educational functioning)
As we are in CA, I know state laws can vary. Do you have any advice or websites i can research? Should I just start with IEP and 504. I remember some great info on the previous message boards, but not sure where all that info is now.