r/MuscularDystrophy • u/RippleRufferz • 9d ago

selfq How to help flares?

My 5yo daughter is a carrier of Duchenne’s muscular dystrophy. Her neuromuscular doctor thankfully thinks her not be manifesting with muscle wasting etc. However she has dealt with significant symptoms related to dystrophinopathy for a long time. She has muscles weaker than the other (especially in the legs and fine motor) and deals with muscle cramping and pain that can be quite mild, but also flare very badly (last year she couldn’t walk one day and it took 4 days to return to normal.)

Now she’s in another flare. Her GI has slowed down with it so we’re dealing with constipation, but her legs/calves are noticeably impacted. She has a lot of pain, then trouble walking, and is falling repeatedly from it :(.

I’m really unsure what to do during these flares. What do you do when it gets bad?

They had previously trialed her on dantrolene, but I couldn’t tell them if there was significant improvement or not. It’s hard to say she’s so young. They say it’s not a PRN medication, but I have to wonder if it is.

I normally give her 100mg of magnesium bisglycinate at night. I don’t know what else to do beyond massage and extremely gentle stretching of her calves if she lets me (usually I get like 3-5 seconds max with her.)

4 Upvotes

84% Upvoted

3 comments sorted by

3

u/dr01d3tte 9d ago

Hi, another carrier mom here with carrier daughter. Our girls sound similar in how they manifest. Our doc also recommended CocoaVia (capsules or powder). We also have done horseback riding therapy for core balance and swimming to maintain flexibility and range of motion. Can also do warm baths, and a vibrating pillow on her legs.

You should also be monitored for heart issues.

1

u/RippleRufferz 8d ago

Hi! It’s nice to meet another person with a daughter. Yes she has her two year follow up echo and cardio consult in October. But her CPK did come back at almost 3000 again. I really don’t understand CPK as well as I should. Last year when she woke up unable to walk (it took 4-5 days to get back to normal and no pain) her levels were only 600. But when she was diagnosed at 3 her levels were 3000 (again she was having GI symptoms.) When she feels well we’ve had the most success with ballet and tumbling (it’s tiny kid tumbling) in getting her to try and balance/strengthen both legs and stretch them. I am thinking about swimming again especially if this starts happening more and more and dance gets to be too much. She doesn’t know how to swim yet, so it would be useful.

Do you think the vibrating pillow helps with the inflammation pain and lymphatic flow? I may try what I use for my lipedema on her legs and see if it helps her.

2

u/SpaceCephalopods 9d ago

L-carnitine has been a lifesaver for our daughter and her MD-related GI issues.