Reply To: Advice needed
Welcome to forum
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.