My little boy has been under investigation since early 2020. We have had DMD and LGMD ruled out and now await a muscle biopsy. We have been waiting for this for over 12 months. My son has just turned 4 and his last review was via MS teams when he had just turned 2. I haven’t heard from his consultant since. Is this normal? I don’t know I should be chasing a review at this point? He is doing well but does struggle with the stairs and keeping up with his peers when running around. He is also having trouble with constipation could this be related to MD? I just feel that maybe we could be doing physio or something surely?! But then I don’t know if hearing nothing is good. I just don’t know what to do for the best. I feel like I’ve just been left to get on with things by myself.
Many of us with MD have digestive issues due to low mobility and muscle tone. Reviews seem to differ regionally. As an adult I see my neurologist once a year and was about every 6 months as a older child/teen. Dont recall how often I seen them in the early diagnosis days but it was neurology who coordinated my other things like respiratory and orthotics as well as dietician.
Your right in that physio and exercise is beneficial. It prevents contractors and keeps things moving. I would defo chase a review and ask for respiratory review and growth charting also.
On a practical level that you can do as a family. Swimming is great for MD. I never learned to swim due to my poor neck control but was still good to be in the water. Have a look at disability sports. I know he’s only 4 but your local Boccia club I’m sure would welcome you both. Boccia is similar to curing with out the ice but same idea. Throw a ball or roll down a ramp to be closer to a target. Disability sports could also let you connect with other parents. Frame running could also be great fun as many of us with MD struggle with the coordination of traditional pedal bikes. Frame running bikes have a saddle but no pedals.