My son, Neel is 2. He was diagnosed with DMD about 2 weeks ago. When we asked his doctor what he thought our next step should be he said that we should wait until we notice that his muscles are getting weaker. How do you just wait for that? At 2, Neel still cannot get up off the floor without holding onto something for support. In order to climb the stairs he still crawls up them. He only started to walk about 2 months ago. I want to be proactive. I have started to take him to the pool daily and we massage his calf muscles daily as well. But can someone tell me what there doctor told them once diagnosed. Did you just sit around and wait . . . Please advice.

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When my son was diagnosed at 5yrs old we were sent home with a prescription for steroids to improve his strength. It is the only thing our son's have right now. It has been shown to not only increase muscle strength but also heart and lung function by an estimated 3-5yrs. I'ts a tough choice to make given the side-effects they can have but it has improved my son's strength. I would be questioning your doctors very non-proactive approach (as you are) and look into steroid treatment. I believe Dr. Wong prescripes them to patients as young as 2 or 3yrs old but am not sure on that. Also, PT and stretching are important. I was told swimming is an excellent therapy.
My son was diagnosed at 2 and we put him on steroids STRAIGHT AWAY! It wasn't even a difficult decision for us to do so - we wanted to give him as much chance as possible to keep walking as long as possible, to buy us time for a cure or a better treatment. We also put him into Physio straight away and massage/stretch his legs for 20-30 minutes every night. We now carry him up and down stairs - we even employed a second maid to carry him up and down the stairs at his school (since he is on the 3rd floor).

I am like you - I cannot sit around and wait for my son to go downhill and get worse. I owe it to him, to enable him to live as much a typical boy's life as possible.
We didn't find out until Kelvin was 5, but immediately started multiple supplements (we started a new one each week to see how he'd adjust), nightly massage and stretching, night braces for a preventative, got a pool for exercise, got a hot tub for hydrotherapy, then started Deflazacort (steroid). This is just what we did, most others on here do about the same. Many folks use a bath mat for heat massage in the tub. We are doing all we can, but try not to do too much. Michelle
our son was diagnosed at 3 and we put him on steroids, supplements and in night splints and stretching straight away (took about 6 months to get everything organized and in place..ie vaccines and baselines done before steroids.)
Carrie
Thanks for your replies. I have already started to take him swimming daily. He has been in physical therapy for about 4 months because of his toe walking, and we have been massaging his legs since he was about 2 months old. I have just been really overwhelmed with the info. The doctor said to start him on creatine but then told us to wait for the weakness. I just feel helpless. Again thanks.
You are already doing good with massage and pool...maybe include some stretching exercises which you can find on the main PPMD site.

2 y/o is still young, so it can be hard to decide to put your little guy on all kids of supplements and medications.

Neel will eventually get stronger and be able to walk up stairs using the rail to help pull himself up. He will run at his pace, maybe at 3 or 4 y/o. You will observe that he will gain strength, it just happens a little slower for our kids.

As for steroids, you still have plenty of time to decide when to start them, if you even decide to.

My son is 7 and isn't on them yet. I've had parents whose boys are on steroids see my son and tell me not to start them. I've had parents tell me now is the time. Only you know when it's time, so do what you feel in your heart is best.

As Neel gets older, you and medical tests will help decide what needs to be done.

Take care.
my son jonathan was diagnosed at 10 months old and we were told to basically watch everything, but I could not do that, though i did have an excellent I guess you could say coach, but we started first with physical therapy, we found a local pt and they helped alot at least teaching me what to do, I did wait til he was like 3 1/2 before steroids.
Joshua was 6 weeks old when he was diagnosed. We were told too there was nothing much we could do until he started to move around. He started getting physio around 18 mo. and was starting to get supplements of a minimal strength. He was a very small boy, so the steroids didn't start until he was 3. He's 5 now and only weighs 44 lbs. Joshua is on 2 meds and 8 supplements now. He will always need his physio, but I'm sure glad we pushed for it all early.
My son was diagnosed at Age 6. We were just advised of diagnosis and basically that was it. That was 2/13/2007. We got word from another parents about 6 months ago to take my son to Cincinatti Children's Hospital with Dr. Wong and we are going in November to finally get the right treatment. I think it is ridiculous there is not the same standard of care across the nation along with an intergrative approach to care. We need to fight for that. Our boys lives depend upon it. We are the best advocates and it is time we told the Dr's if they cannot care for our son's properly, then we will seek the right Dr's that will. I believe some of them are starting to get that message. We have to be heard. This past summer, I opened my mouth to a gentlemen I did not know was a Neurologist at a MDA clinic about Dr. Wong and in the process he is realiziing he is losing clients to Dr. Wong. He wants to know what she does that is better than what he does. That tells me we have to fight this cause even more so. Sorry to rant, but it is extremely frustrating to be left in the dark by Dr's. But we as parents have a great deal to gain from each other. This is why PPMD Community is so great!
Well we were a little behind in the actual diagnosis. My son was 8. BUT..since he was 6 weeks old, he was in a special needs daycare due to his small birth weight and then when he turned a year old, he started getting PT, and OT. So, he continued to get regular stretching, and excercised from then on. Steroids were not started til he was 8, although he was on Growth Hormone Treatment which I feel was a HUGE plus as his symptoms didn't really show it a problem until after we stopped it. ( kinda complicated, but we stopped due to moving to another state, insurance issues etc.) Looking back, even though we did not know of his diagnosis til late, I would not have changed anything that I had done for him. I made him walk, he went up and down stairs, he participated in what he wanted to do ( T- Ball) and we didn't have him on any supplements etc. Today he is 10 going on 11 and still walking, good health thus far. Yes, this year he has shown some decline in strength, but overall he is doing good. Like what has been said earlier, you will know what to do by listening to your heart. No 1 way is the right way. We all have different examples of things we have done or did, but ultimately every boy is different and what works for some may or may not work for others.
Max was diagnosed at about three months, and our MDA clinic doctor advised us to come back at one year to see how he's doing, and we'll probably start daily stretching exercises at 18 months. The doc said he usually starts patients on steroids at 4 years old. Our plan is to just love the heck out of him and enjoy this time with out little one as much as we can.
Hi:
Our son Tory was diagnosed when he was 2 years old - we felt the same way - we couldn't wait and not do anything. We began on creatine and then slowly did our own research and added the others as we felt confortable. He is probably on what most boys are (coQ-10, deflazacort, protandim, green tea etc.). We also started night splints right away. The one thing I have to say about our son ( and it may be because we started young) is that he takes everything as just a part of his everyday routine. The other thing is that you can find most supplements in liquid form - Tory calls it his vitamin juice and knows that it is the first thing he must drink. Best of luck.
Kelly

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