Replies to This Discussion

Permalink Reply by Kelvinsmom - Michelle on December 19, 2008 at 8:37pm

Kelvin had a bit of speech delay, but never serious enough for therapy, but boy, the drooling, it was crazy, seemed like years. Kelvin walked normally, by 12 months. Kelvin was never "behind" in any milestones, just slower to run, couldn't jump well on 2 feet from age 12 months to age 3 and did fall quite a bit from age 12 months to age 3 as well. He hasn't fallen much for about 3 years. It seems that every child with DMD is very different on what is an indicator of something wrong. Kelvin was a bit slower with his motor skills, mostly writing. He is progressing and doing much better in kindergarten. Michelle

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Permalink Reply by Char Burke on December 27, 2008 at 10:40pm

With DMD, there is a smaller isoform of dystrophin in the brain that is effected. This effects DMD boys differently. Even with high or normal IQ's - the learning process is effected. I think if you google Dr. Victoria Hinton, you can find out alot of info. On the UKPPMD web site, there is a tool box that you can read about issues.

I would read to your son every day for about 30 min. That will help him with his vocabulary, etc. The good thing is that the brain isoform does not brake down like the skeletal muscle does. But, there are certain learning problems - like phonetic awareness. But, there are things you can do to help. Search this website for info as well as Dr. Hinton.

I think most parents would tell you that they experienced physical delays on like crawling, pulling up, walking, turning over. These are so involved with muscle strength. As far as speech, yes, I do think that is effected as well. Not trying to be a negative person here....There are tons of DMD boys that are very smart and graduate from college, etc. It's just that there are issues with these boys. I think the biggest thing you can do is to educate yourself and try and not get discouraged when you son is not doing something that a non DMD child is doing. Get him the most help you can and try and be patient.
Char Burke
Mom to Will age 6

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Permalink Reply by Sharyn Thompson on December 28, 2008 at 4:50am

One thing I have found with James is that he is DELAYED in many things that are cognitive or speech related, but with a little patience and perserverance he does catch up and he does continue to progress normally. It just seems to take him a little longer than average kids, but he does get there and he even excels. Just keep perservering and you will be amazed at the results.

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Permalink Reply by Lee Ann Faeth on December 29, 2008 at 5:22pm

Hi Veronica,

I just want to add a positive perspective so that you aren't looking for things that may truly not be there. My son was diagnosed at 2 1/2 (he is 4 1/2 now) and he did have physical delays. He didn't walk until 16 months, had trouble crawling, fell down easily even after months of walking and his balance was off. He also couldn't run, jump or climb stairs without holding on to a wall, railing or someone's hand. As he has grown, some of these things have improved with a combination of age, steroids and physical therapy. On the other hand, he has had NO cognative or learning issues whatsoever. He started talking at 9 months and was using complete sentences at the age of 18 months. His speech has always been very clear. He started reading 3-4 letter words just after his 3rd birthday and is now reading without assistance at a 1st-2nd grade level. He is also already able to do basic addition and subtraction and hasn't had any behavioral issues other than a typical 4-year old tantrum once in a blue moon. The only issues we have run into in preschool so far are also physical. He has trouble using scissors and coloring for long periods of time, which is to be expected.

My point is that although there have been some studies done and many of our boys do have other issues that come along with the disease, each boy is different and not ALL of them are effected with learning/cognative issues. Although we can all offer advice and share our own experiences, every one of our boys develop differently. I suggest that while you keep a guarded eye on possible delays, try to just enjoy each day with your little guy as much as possible right now.

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Permalink Reply by Veronica E. on January 3, 2009 at 2:33pm

Thank you for your input, everyone! I guess I just want to try to stay "on top" of everything since I have the mixed blessing of knowing Max has Duchenne so early. If he starts to lag behind in a certain area and there is a therapy to help him feel better about himself, I want to act in a timely manner. The more I read about your families and children, the more I feel that we'll be OK whatever happens. :)

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Permalink Reply by Ivy Scherbarth on January 30, 2009 at 2:36am

Thought I'd go ahead and update. Our son is coming along nicely with his speech now. Our daughter has just been told that she needs to be in speech therapy 3-4 times per week, both individually and in a group setting. Holy cow, man.

Ivy Scherbarth said:

Our daughter is a carrier and was/is delayed in her speech. She babbled a lot but with a limited number of sounds. She was able to master several signs (American Sign Language) "on time" or a little late, but didn't really begin speaking anything (nothing, not even "mama" and "papa") until just past her 2nd birthday. Now she's turning 4 next week and we're looking into speech therapy. She talks a lot, even some sophisticated words ... but with a limited set of sounds (making it virtually impossible for strangers to understand her). She doesn't say the sounds that go with these letters: g, k, s, z, sh, v ... just subs in a d or t for everything.

Our son, who has DMD, is now 20 months. He learned to be stable when placed in sitting around 7-8 months. He still doesn't like to roll over, but that seemed pretty "on time" if rare. But that's pretty much as far as he's made it. He still cannot get from lying down to sitting up without help or vice versa. He does not spontaneously stand, though now he can do it, supported, with help from his PT or parent. He does not crawl. He can scoot on his bottom and has gotten pretty good at it, so now he can finally get into toddler-style mischief. He developed that around 17-18 months. He has been in PT every week only for the last 3 months or so. His diagnosis was when he was 14 months (we were in denial for a long long time despite his obvious, major delays).

Our son's speech is also a bit delayed ... though not in comparison to his sister's. He has a combination of signs and words that he uses regularly, even including signs for "thank you" (rarely) and "excuse me" (consistently). We are working on it some more.

On speech: A speech therapist encouraged us to use sign language, and it really does help in communication and frustration. There are some good "baby sign language" resources out there and we've found that a lot of parents are doing this anyway. We have also been told to do a few things that are sometimes easy to forget: talk to/with your child a lot, do finger games (like "Where is Thumbkin?") and nursery rhymes (Mother Goose is classic). Sing to/with your child. Read aloud, a lot, both to your child from kids' books but also anything you happen to be reading ("Add two tablespoons ..." or your local newspaper or whatever).

Good luck!

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Permalink Reply by Jessica on February 22, 2009 at 10:49am

My son is 2 yrs old with a prediction of becker. He also did the army crawl at 8 months walked at 13, he is now 2 and out toes with his right foot. Anyone else experience out toeing?
Ivy Scherbarth said:

Thought I'd go ahead and update. Our son is coming along nicely with his speech now. Our daughter has just been told that she needs to be in speech therapy 3-4 times per week, both individually and in a group setting. Holy cow, man.

Ivy Scherbarth said:

Our daughter is a carrier and was/is delayed in her speech. She babbled a lot but with a limited number of sounds. She was able to master several signs (American Sign Language) "on time" or a little late, but didn't really begin speaking anything (nothing, not even "mama" and "papa") until just past her 2nd birthday. Now she's turning 4 next week and we're looking into speech therapy. She talks a lot, even some sophisticated words ... but with a limited set of sounds (making it virtually impossible for strangers to understand her). She doesn't say the sounds that go with these letters: g, k, s, z, sh, v ... just subs in a d or t for everything.

Our son, who has DMD, is now 20 months. He learned to be stable when placed in sitting around 7-8 months. He still doesn't like to roll over, but that seemed pretty "on time" if rare. But that's pretty much as far as he's made it. He still cannot get from lying down to sitting up without help or vice versa. He does not spontaneously stand, though now he can do it, supported, with help from his PT or parent. He does not crawl. He can scoot on his bottom and has gotten pretty good at it, so now he can finally get into toddler-style mischief. He developed that around 17-18 months. He has been in PT every week only for the last 3 months or so. His diagnosis was when he was 14 months (we were in denial for a long long time despite his obvious, major delays).

Our son's speech is also a bit delayed ... though not in comparison to his sister's. He has a combination of signs and words that he uses regularly, even including signs for "thank you" (rarely) and "excuse me" (consistently). We are working on it some more.

On speech: A speech therapist encouraged us to use sign language, and it really does help in communication and frustration. There are some good "baby sign language" resources out there and we've found that a lot of parents are doing this anyway. We have also been told to do a few things that are sometimes easy to forget: talk to/with your child a lot, do finger games (like "Where is Thumbkin?") and nursery rhymes (Mother Goose is classic). Sing to/with your child. Read aloud, a lot, both to your child from kids' books but also anything you happen to be reading ("Add two tablespoons ..." or your local newspaper or whatever).

Good luck!

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Permalink Reply by lisa burke on May 25, 2009 at 9:11am

I too am interested/worried about this. Seth is only just 6 months old but so far I think he is meeting, and maybe exceeding some of, his 'milestones'. He rolled at 3 months, sat unaided at 5 and now, at almost 6 months is trying to crawl (he can get a little way, depends how much he wants the toy in front of him). He babbles all the time and can say "umum", "dadad" and "eeow" (for 'meeow' aka 'the cat'). If he holds onto something he can also stand for a while, quite steadily. He's extremely strong for his age and can do things like feed himself with a spoon. It takes him seconds to work out that if he presses buttons on certain toys he is rewarded with a song/lights. Are these positive signs??? Do they mean anything at all???? No-one seems able or is willing to tell me. I realise I may not like some of the answers you give me, but it just seems a 'step too far' for me for him to be delayed/mentallyimpaired on top of everything else. I just want him to be 'normal' for a little while. I've never had a baby before so I just don't know if all this is 'ok'.

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Permalink Reply by Danelle Dickerson on May 25, 2009 at 4:26pm

Lisa,
Your little guy is doing great! In my humble estimation - as a mom of 4 - I'd say he's right on. Milestones are tricky, because they aren't an exact science. I know all of my kids progressed at their own rate. I would say, just enjoy these baby years with him. Do everything you would normally do to stimulate his senses and his brain. And not all DMD kids have cognitive/sensory issues, though there is a greater tendency. My son with DMD is definitely "quirky," but that's a part of who he is.
Danelle

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Permalink Reply by jenn on May 26, 2009 at 9:12pm

i have a 10 year old with dmd who never had speech issues, and a 7 year old who had obvious speech problems from the time he began to babble, who knows if this is dmd related or not? i do know that early intervention is key

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Permalink Reply by lisa burke on May 27, 2009 at 9:40am

Can anyone tell what 'early intervention' for both speech and motor delays are? None of our medical 'team' seem to be interested. They wll only get involved 'once a problem has arisen'. But that's the point, I don't WANT the problem to arise in the first place if it can be avoided. I talk/sing to Seth all the time and we do plenty of "name the thing", in both English and Welsh. We read a lot. We do 'pick up and pass' with toys of varying sizes and lots of tummy-time/pretened crawling. Is this the sort of thing that the professionals would do?? For all I know I could be making Seth worse....

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Permalink Reply by jenn on May 27, 2009 at 10:52am

lisa, do you have any early intervention services available through the school system? here in vermont both my sons qualified for the services based on their diagnosis. we had a speech pathologist for my younger son max and Physical and Occupational services for both boys in our home from infancy to age 5. they did a variety of things in speech, max had a hard time expressing himself verbally, so they taught him sign language. eventually he learned to talk, his speech teacher was great, but you can do the same things at home. reading and singing and talking are the most important, also using mirrors for your son to see himself making noises, that was helpful for max. as far as working with him physically, the PT and OT worked on balence and coordination with balls and swings. i know its important not to push too hard or make your son struggle too hard, just playing around and giving him oppertunity to move around is most important. by best advice is not to worry, there is a connection between duchennes and delays in all areas, but for the most part with support the boys seem to "catch up" in the areas of speech and learning. both my boys are on IEPs in school, but both are learning to read and do math, have advanced comprehension for their ages and most importantly are quite happy despite their challenges. also, i see no reason for you to be concerned that he is "mentally impaired" he sounds quite sharp cognatively, and the tendancy in duchenne i think is less impaired and more likely having auditory processing issues and learning disabilities such as dyslexia, also sensory issues are quite common in duchenne. my boys each show some of these traits but in different ways. hope ive been helpful, i know its so scary to hear all of the possible issues on top of the physical stuff, its not easy, just take it a day at a time and focus on the fun, i miss the baby age terribly..

lisa burke said:

Can anyone tell what 'early intervention' for both speech and motor delays are? None of our medical 'team' seem to be interested. They wll only get involved 'once a problem has arisen'. But that's the point, I don't WANT the problem to arise in the first place if it can be avoided. I talk/sing to Seth all the time and we do plenty of "name the thing", in both English and Welsh. We read a lot. We do 'pick up and pass' with toys of varying sizes and lots of tummy-time/pretened crawling. Is this the sort of thing that the professionals would do?? For all I know I could be making Seth worse....

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