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 Subject :13 month old just diagnosed.. 2008-03-26 09:11:12 
Evans' Mother
Experienced
Joined: 2008-03-26 04:43:09
Posts: 37
Location: 
 
Name: Evan City: Miami Beach State: FL Country: USA Year of Birth: 2007 Onset: no symptoms Diagnosis: 13 months Deletion: 13 Frame: In-Frame/Frame Shift Cardiac Problems?: Y/N Ambulatory Problems?: Y/N Respiratory Problems?: Y/N Entry Date: MONTH, 2008 [u]COMMENTS[/u] We just found out our son has bmd. We are scared and can't seem to find any answers. only that he may have problems starting at age 7 or much later. When did others symptoms start. Right now he is very active and walking independently.
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 Subject :.. 2008-03-26 11:09:34 
kgoodfellow
All Star
Joined: 2007-02-20 17:21:41
Posts: 679
Location: Denver
Hey there... Glad you found us here. I think you'll find a lot of answers to the questions you have, as well as some fellow parents that can relate and have some good advice. There are some things that unfortunately cannot be answered...such as what the future holds.... BMD is highly variable from person to person and the severity is impossible to predict, despite what you doctors may or may not have told you. Personally I wasn't even diagnosed until I was 35 years old. So, it may not be as bad as you imagine or the picture your doctors paint for you. Your child will have his own unique experience. Welcome Kevin
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K. Goodfellow
 Subject :.. 2008-03-27 00:30:04 
Roxanne
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Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada
Hi Evan's mom, Don't take what your doctors are telling you at face value. They cannot predict what the future holds for your son; like Kevin said. He very well may be an adult before any signs of this disease appears; he may very well walk until he's 80 years old. Take it one day at a time & don't try to look into the future & think it's going to be horrible for him; cause it doesn't have to be. Keep a positive additude. :)
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Roxanne Mom to Nicholas (10) with BMD
 Subject :Thanks for the encouragment.. 2008-03-27 01:19:20 
Evans' Mother
Experienced
Joined: 2008-03-26 04:43:09
Posts: 37
Location: 
 
Thank you for the encouragement. Each doctor seems to have a different take on it. We are trying to be positive. I have a question regarding the MDA clinics. What can I expect there? My son was diagnosed last week and the earliest the clinic can see me is October. We have already seen the geneticist, nutritionist, neurologist, and orthapedist. The nutritionist recommended CO q10, and creatine. Though there is no research with such a small child taking these supplements. Any thoughts are greatly appreciated.
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 Subject :.. 2008-03-27 01:43:00 
Roxanne
All Star
Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada
Hi, It seems your son is in good hands & your doctors are on top of things. The wait until October for the MDA clinic (my thought) is not a big deal. They will do a baseline on your son to see if there are any signs of muscle weakness at this point. They will do such things as watch him walk, get up from floor, run etc(although he's just 13 months old & maybe not running yet) They will test his strenght in his legs, arms, reflexes etc. They will show you ways to excerise and stretch. It's all pretty much a baseline to see where your son is on the BMD scale. He's young and active so I wouldn't worry about the excerise part of things, he's doing that anyway. As for the supplements... this topic hasn't come up yet with the doctors. I'm currently giving him tho Flax seed oil 1/2 teaspoon a day & a children's mult-vitamin. I do hear that the CO Q-10 is good but not sure if such a young child should take it. I would suggest that you research this a little further before giving your son any supplements. You can go onto the PPMD website at www.ppmd.org. Alot of the Duchene parents are giving their children supplements but not sure about that young. Any questions, pls know we are here for you.
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Roxanne Mom to Nicholas (10) with BMD
 Subject :.. 2008-03-27 02:17:41 
Roxanne
All Star
Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada
Hi sorry, I gave you the wrong email address for parent project. The website is www.parentprojectmd.org There's alot of information on this website; so please try not to read too much of this stuff. My advice would be to read enough to answer your questions today only; and remember these kids have the more severe type Duchenne's so their progession is much faster and more severe. You may not have to worry about much of that stuff at all.
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Roxanne Mom to Nicholas (10) with BMD
 Subject :.. 2008-03-27 03:43:13 
Roxanne
All Star
Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada
Evan's Mom, I would also like to add. Research this disease & learn as much as possible; knowledge is power. I would also tell you tho to take it one step @ a time and one day at a time. Take care :)
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Roxanne Mom to Nicholas (10) with BMD
 Subject :.. 2008-03-28 09:02:25 
Meisa
Experienced
Joined: 2007-11-14 11:37:47
Posts: 39
Location: 
I know exactly what you're going through. My 12 year old son was recentlty diagnosed with BMD. His diagnosis was also by chance through elevated ALT/AST and after a liver ultrasound and a couple of months later they tested his CK and it was elevated. He still looks and acts like a normal 12 year old boy. His only complaint is and always has been that his legs hurt. Finding all of this out was devastating; I cried a lot for weeks and felt hopeless and guilty. I did go through a bit of counselling and that really helped. The advice you're getting here is all very good. Take it one day at a time and remember you are not alone. We are hoping and praying for a miracle break through for this disease. Take care, Meisa (Jordan's mom)
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 Subject :In Frame.. 2008-04-07 05:39:38 
Evans' Mother
Experienced
Joined: 2008-03-26 04:43:09
Posts: 37
Location: 
 
Evan has a deletion that is in frame. He also has no cardiac problems. He will go to a pulmonologist tomorrow. He is almost running.
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 Subject :.. 2008-04-07 07:50:28 
Roxanne
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Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada
Hi there, I just want to say good luck for tomorrow. I don't think you'll need it tho. I would think at 13 months they don't expect any problems. Take care & enjoy your little runner. :)
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Roxanne Mom to Nicholas (10) with BMD
 Subject :MDA Suggested steriods.. 2008-04-17 04:13:14 
Evans' Mother
Experienced
Joined: 2008-03-26 04:43:09
Posts: 37
Location: 
 
WE just arrived from the MDA clinic. My son has no clinical symptoms he is now 14 months old (walking jumping, can get up from the floor), and the dr. wants to see him every 3 months. He also suggested starting steriods once a week. I was under the impression that Becker patients are only prescribed steriods very limitedly and when they are much older. I do not have a good feeling about the MDA clinic. I think we are better off with a pediatric neurologist. Does anyone else have any thoughts about this?
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 Subject :.. 2008-04-17 04:49:51 
Roxanne
All Star
Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada
Hi Jessica, I'm surprised they want to start him on steriods. 1 at such a young age and 2 he doesn't have any symptoms. He's running, jumping etc. I would get a second opinion for sure. Many parents on parentprojectmd take there kids to see a pediatric neurologist Dr. Wong. She is highly reccomended thur the DMD community. I have emailed her myself regarding a few questions I had and she replyed to my email right away. I suggest emailing her your concerns. I'm not sure what her email address is now but I will check this out for you & let you know. I will be right back with that info. :)
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Roxanne Mom to Nicholas (10) with BMD
 Subject :.. 2008-04-17 05:02:57 
Roxanne
All Star
Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada
Hi Jessica, not sure if it's possible to take Evan to see Dr. Wong. She's in Cincinnati. Her contact email address is brenda.wong@cchmc.org I also found her phone number 888-894-1374 or 513-636-5151. If it's possible, you can schedule an appointment with her through clinical_concierge@cchmc.org I hope this helps & you get some answers. Let me know how you make out :)
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Roxanne Mom to Nicholas (10) with BMD
 Subject :Thanks.. 2008-04-17 05:22:50 
Evans' Mother
Experienced
Joined: 2008-03-26 04:43:09
Posts: 37
Location: 
 
Roxanne, Thank you I will try contacting her.
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 Subject :.. 2008-04-17 05:38:04 
Meisa
Experienced
Joined: 2007-11-14 11:37:47
Posts: 39
Location: 
Hi Jessica, You know, that does sound very odd to start him on steroids if he is not showing any clinical symptoms. I would definitely get a second opinion. I am actually not very happy with one of the MDA clinics in my area and am looking at going somewhere else. Our Neurologist hasn't even referred us to a cardiologist yet and says, well, your son doesn't have any symptoms. I would like to get a baseline assessment of Jordan to see where he is right now (5 mos after diagnosis) and check them once a year. These doctors just don't have the time of day for patients sometimes. Luckily I have copies of all of Jordan's visits and results so I will just go to a couple of other docs to see what they say. I complained to the MDA office here in SF but they don't seem very helpful either. Any way, good luck to you and don't start Evan on anything until you talk to at least one more doc. Meisa (Jordan's mom)
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 Subject :Cardiologist.. 2008-04-17 07:18:17 
Evans' Mother
Experienced
Joined: 2008-03-26 04:43:09
Posts: 37
Location: 
 
Hi Meisa, I actually have a great genetiscist. They were the ones who referred me to a cardiologist, orthapedist, and pulmonolgist. Maybe just try to schedule the cardiologist appt yourself. They did an echocardiogram and EKG to see where he is at. Everything is fine, but it was more positive feedback, and definitely worth the time. The MDA appointment was the hardest one to get and the least positive. I just booked my flight to Boston and we are headed to Boston Childrens' hospital to meet with pediatric neurologist who is researching muscular dystrophy. I will keep you all updated. Hope you and your family are doing well. Kind Regards,
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 Subject :.. 2008-04-17 07:59:44 
shuggins1121
New
Joined: 2007-04-26 06:31:25
Posts: 13
Location: 
Hi Evans' Mom - I just wanted to post my recent experience with the MDA clinic. My son is 10 and was diagnosed 2 years ago (we knew it was a possibility since I''m a carrier.) We are also in Florida and really didn't get anywhere positive with the pediatric neurologist we saw here. Our pediatrician came across some information about the Childrens Hospital of Atlanta at Scottish Rite having an MDA clinic and we just went there last week. It was such a great appointment and I was so glad I made the trip. Our appointment lasted 4 hours but we were well taken care of. We first saw a physical therapist and an occupational therapist who did baseline measurements of his strength and range of motion (no one has done this for him yet!) Then the social worker came in to make sure we were not having any insurance or school issues and told us that they would be an advocate for us in the event we did have issues. Then the doctor came in and did such a thorough exam on him. Right off the bat he asked me if we were having any problems with chest pain or dark colored urine, 2 issues I was concerned about and had not gotten any good feedback about. Anyway, I just wanted to highly recommend this clinic. They want to see him every 8-12 months so I feel like he's now in really good hands.
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 Subject :Our son update.. 2008-06-24 07:05:13 
Evans' Mother
Experienced
Joined: 2008-03-26 04:43:09
Posts: 37
Location: 
 
Evan is now 16 months old, he is happy energetic and running. He seems to over extend his knees. I don't know if this happened to any one else. He does also seem to get very red when he is playing outside. We continue to stay positive. We have also started him on creatine and coq 10.
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 Subject :UPDATE.. 2009-02-21 04:18:32 
Evans' Mother
Experienced
Joined: 2008-03-26 04:43:09
Posts: 37
Location: 
 
Hi, my son is now 2 years old. He is doing great he is a happy little boy. I have him in physical therapy 2 times a week. He still cannot jump and he really out toes a lot with his right foot? Does anyone else have a problem with out-toeing?
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 Subject :EVAN UPDATE.. 2009-07-08 01:07:23 
Evans' Mother
Experienced
Joined: 2008-03-26 04:43:09
Posts: 37
Location: 
 
Just came back from a check up with his local neurologist here in miami. Evan does have a little weakness but he is still considered Asymptomatic. He is still happy and VERY active. He is not walking so much out toeing any more. He is walking much more straight. Please pray he will have mild symptoms.
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