Help! My son, 8, was just diagnosed with Duchenne yesterday. I need support and people to talk to. Can anyone help me out.

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Hi, my names Johanna, it's great to see you being proactive about your sons examinations. My son Dylan was diagnosed at 20 months, he commenced steroids immediately due to the severity of his DMD, I had him swapped from Pred to Deflazacort to see if they were any better and so Dylan had to have baseline testing done this included a cardiac review. He had an ECG and an Echocardiogram of his heart done and unfortunately it showed that Dylan already had cardiomyopathy and was started on Ace inhibitors (cardiac medication) he had only just turned 3! Keep being proactive as our cardiologist was shocked to see the results, he also said that they don't start doing cardiac checks until the DMD boys are around 9/10yrs of age and so we were very fortunate to be able treat Dylan as early as we could. You are entitled to be the one to be your son's advocate and if you feel better having things checked even when you are told it's not really necessary you keep on going. Good luck and hope all goes well. Kind regards Johanna

irishgirl said:
This is to everyone:
Recently, I've been researching evidence-based topics for MD.
I've come across creatine and glutamine supplements. Evidence shows they help. Does anyone here offer these supplements to your child? If so, how and in what form? Also, this new study is out on Green Tea Extract and evidence shows that mice - with wheel training endurance (running endurance) are having nearly 300% improvement in muscle function. Same goes for Curcumin. If anyone has any further info, please let me know. Now here is a biggie I found - Oligodeoxyribonucleotide. Can anyone shed some light here?????
And, one more question. We are taking Liam in for his baseline heart visit with the cardiologist Wednesday. They said it was really unnecessary at this point and is generally done at age 10. But, I will not wait - I'm very proactive. I want it done now. I would like to know if you all can let me know anything specific that should be covered in this appointment. I want the EKG and Heart MRI done. But is there anything else I need to make sure is done or to at least ask about???
In short, you all are wonderful and I thank you all so much for being on this site. I' don't know what I'd do without even one of you.
So thanks and I am greatful.
Noreen
Johanna:
Thanks so much for your post. Can I just say how badly I feel about your son. I hate this disease so much. Every time I read post like your, I hate it even more. You wrote that you switched to Deflazacort? Did you notice any wee improvements in your son's heart/ventricles? Our doctor also said the baseline for the heart review was age 10. BS to that. Do it ASAP - do everything you can ASAP. Do not allow one doctor to rule. It is so imparative to bring in as many sides as you can which only adds to your information file. Our son's doctor, Robert Leshner, at Children's in DC is amazing, but not into supplements - so we are going to Dr. Wong in Cincinnati for that side. Leshner fully supports another doctor's input - and to ANYONE whose doctor is upset by your calling on another - needs to GO! Make sure you look to evidence-based trials and information. Never give up. The complete knowledge of this disease is incredibly new - actually only in 1980 was it totally pinpointed. Love your little guy and remember he is perfect, to you.
Hi Irishgirl. My son Austin was also diagnosed at 8yrs old. He is about to turn 10 now. Its been almost two years since his diagnosis. Im not sure about your son's history, but with Austin, it has always been a question of why is he slow at this, why cant he do that. Now, I finally have my answer's. Not that they're the ones I wanted, but it explains alot.
I was shocked, depressed, embarrased (although, I wasn't sure why), I went through all of these feelings. I'm sure you are too. I try to get on here at least once a week. Look at my page and add yourself as a friend if you like. I think it's even more of a shock when they're diagnosed this late, it makes it alot harder to know what to tell them when since they haven't grown up knowing that they had this.
We go to Cooks childrens hospital in Ft.. Worth, Tx. We are involved in the MDA (although we have not actually met any other families yet), we've been on one MDA walk in our area. We also had Austin's "Make A Wish". That was wonderful, and definitely something you'll want to look into when the time is right.
Hope this helps. If there's anything I can help you with, or questions you have, just give me a hollar. If I can't answer them, I can usually find the answer.
Hi Ana:
How did you come to realize your son had Duchenne? Yes, it is hard at this age, but you know, I'm taking that as it being better - no early signs, more benign case perhaps. Now that your son it 10, how is he doing? Is he wearing the ankle braces at night? Please, tell me your story? Like you, I was embarrassed for a while and I really don't know why? Stupid, but all part of those feelings you have to go through to help your son not just survive, but to live!
Do you stretch him daily? Let me now your routine as I can only learn from it.
Thanks, Ana

Noreen/irishgirl
Ana said:
Hi Irishgirl. My son Austin was also diagnosed at 8yrs old. He is about to turn 10 now. Its been almost two years since his diagnosis. Im not sure about your son's history, but with Austin, it has always been a question of why is he slow at this, why cant he do that. Now, I finally have my answer's. Not that they're the ones I wanted, but it explains alot.
I was shocked, depressed, embarrased (although, I wasn't sure why), I went through all of these feelings. I'm sure you are too. I try to get on here at least once a week. Look at my page and add yourself as a friend if you like. I think it's even more of a shock when they're diagnosed this late, it makes it alot harder to know what to tell them when since they haven't grown up knowing that they had this.
We go to Cooks childrens hospital in Ft.. Worth, Tx. We are involved in the MDA (although we have not actually met any other families yet), we've been on one MDA walk in our area. We also had Austin's "Make A Wish". That was wonderful, and definitely something you'll want to look into when the time is right.
Hope this helps. If there's anything I can help you with, or questions you have, just give me a hollar. If I can't answer them, I can usually find the answer.
Hi Noreen,

My son James has just turned 4 and was diagnosed 2 years ago, purely by accident. He went straight onto Prednisone, and then we switched to Deflazacort 3 months later. I was reading what you said about EKG around age 10, and I was actually going to tell you about my friend's son, but I saw she actually replied to you already (Johanna, whose little 3 year old was recently diagnosed with cardiomyopathy). James has a cardio assessment every year, and so far they have come back normal. He has a complete eye check, to look out for cataracts and glaucoma, and he has a bone density scan - both of these are yearly. We started him in physio as soon as we found out about the DMD as we felt we needed to do EVERYTHING to give him the best chance. I would hate, in years to come, to find out that something as simple as PT could have helped and feel guilty for not starting early enough. PT has actually done wonders for him, especially his balance and upper body strength. He can also now ride a bike and jump.

THe great thing about this site is the amount of information you will learn. I have learnt so much, even about Preservative 282 after reading this thread today. We are all in a good place together!

Sharyn.
I remember the shock after our son's diagnosis of dmd. He is now 28, a university grad, and working full-time. The thing that helped me cope is the MDA chats. The dmd parents are on Tues, Weds, Thursday(most popular is Thursday) and we support each other and vent and learn new things. Go to the MDA site, click chats, and look for the calendar. All instructions are there if needed. We care, and we've been there. Anna

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