When I picked up Max from daycare on Friday, I noticed he was limping. He was happy as could be and when I asked him if his legs hurt, he said no.  He seemed fine this weekend and was quite active with his sister and cousins. I mentioned the limp to his teacher this morning, and she just called to say, now that I mention it, they've noticed that Max has seemed to tire really easily for the past couple of days and is spending more time sitting/laying around. They also said he tripped and fell two or three times today, just walking around (wasn't tripped up by a toy or friend). I should add that this weekend, he developed a bit of a runny nose and cough.

 

Is it possible that he is declining already? He seems so little for that. Maybe the bug he caught is just making him tired. I put a call into Dr. Wong's nurse to see if she advises a visit to our pediatrician.

 

I was really devastated when I saw him limping on Friday.  Of course I know his diagnosis and the fact that these problems will develop, but it just killed me to think it's starting already. I guess I felt we would have a little more time without symptoms.

 

Views: 276

Reply to This

Replies to This Discussion

Jon wasn't diagnosed until he was 9, however looking back I could see the signs. He used to fall when he was little, he would trip over his own toes. Have you thought about high top shoes. After Jon was diagnosed his Dr. recommended them and it did cut down on the falling a lot. He also wasn't getting as tired because he didn't have to lift his feet as high to clear his toes. Just a thought. Hope your precious Max is feeling better.

Susan
I have seen that my son falls more often if he has some sort of cold or infection in his system .As his on steroids his symptoms are either masked or very mild ,but his fatigue is overwhelming during that time.Hope Max will feel better soon.
I doubt it is a sign of declining..When my boys were young they seemed to tire more and trip when they were going through growing spurts and maybe high top shoes or even orthotics in the shoes might help. Also, if he is coming down with something, that could tire him more easily also.
Thanks, guys. I'm going to go ahead and buy hi-tops for my guy and see if that helps with falling. He has orthotics for his shoes, but he hates them and will just sit and not walk if they are in his shoes ...
Like Lisa, I also doubt that it's DMD related at Max's age. My little one, Seth, is almost 2 y/o and I have noticed that he trips over his toes and falls more when he's distracted or poorly (or both). Often the first sign for us that he's about to come down with a new nursery school bug is that he will be more tired than normal and more clumsy. Also bear in mind that a cold/runny nose can affect the inner ear and that, in turn, can cause motor imbalance as well as lethargy.

Can I ask what high top shoes are though? I've never heard of them.
Lisa, they are just athletic shoes or hiking boots that come up higher up over the ankle. They help hold the foot in a more neutral (close to 90 degrees) position so the toe doesn't drop. It helps them from tripping so much and it also helps because they don't have to lift their feet as high to clear the dropping toe so they won't get quite so tired. Jon used to have a pair of Lands End hiking boots that were really light weight and they helped him a lot.
Thanks Susan.



Susan Rathfelder said:
Lisa, they are just athletic shoes or hiking boots that come up higher up over the ankle. They help hold the foot in a more neutral (close to 90 degrees) position so the toe doesn't drop. It helps them from tripping so much and it also helps because they don't have to lift their feet as high to clear the dropping toe so they won't get quite so tired. Jon used to have a pair of Lands End hiking boots that were really light weight and they helped him a lot.
Sam was diagnosed just before his 3rd birthday and had many of those symptoms. It wasn't until we started steroids (just after 3rd b-day) that it slowly improved.
the highter tops are great a good place to go is zappos.com type in what you want and there iare many to chose from also get shoes that are light weight you would be surprised at how heavy some shoes are and to the lest rubber this better they catch on the carpet and will cause falls. hope that is helpful our son Caleb just got Beeko shoes cause they have the Hatch and hook which means he can get them on by himself getting hard to go the shoelaces Penny and your little guy is adorble as most of these guts are
I did not see this post until now. As Laurie said, all these are DMD symptoms. The disease progresses since birth and they show more or less symptoms at this early age. At this age, most DMD boys are slower than peers, tire easily, lack coordination, fall more often, have difficulty with stairs, do not jump with both legs off floor. It starts to get more visible b/c their peers gain a lot in strength while our boys do not.

I also noticed very low strength when my 3 year old is sick (with a cold or other virus), then he gets back to "normal".

My understanding is that they do improve/gain skills at this age, but the steroids are making the real difference in the boys who respond to the steroid treatment. My son is not on steroids at the moment.
My son is also 2almost 3 his legs sometimes just give out he falls alot also whwn he walks its like his shoes are weights he isnt able to really just run and do things that come natural for other boys his age sometimes i wish i could just wrap bubble wrap around him so he can run and play without falling and getting way too many "owies" it is heart wrenching watching our little guys go through these things i thought it would be many years before he had issues like this and was very worried but maybe its normal with duchennes im not sure.( my son tiptoes alot latley)
when my son gets sick,he slows down a lot and in the case of flu or stomach virus he can loose the ability to walk altogether.The deflazacort helped him almost immediately.He was falling 20 times a day and the day after his first dose he didn't fall at all.Now some days he falls and some days he doesnt,but when he's sick he falls alot.

Reply to Discussion

RSS

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2019   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service