Here are some suggested organisations that offer expert advice on special needs.
Does anyone have any experience of this..
Dd has had lots of muscular issues for a few years. Weakness in arms and legs. Episodes of dystonia/paralysis in limbs that comes and goes over a few months.
She has swallowing issues and a weak diaphragm. Breathing issues. Weak eye muscles. List goes on!!
No doctor can tell us what’s wrong or indeed link all her symptoms. It’s so hard to manage when we don’t know what we’re managing.
Does anyone have any clues??
Sorry. I forgot to say she’s 10yrs old. She’s had pins and needles from as young as she could talk. And has had muscle weakness from about 6years old
I have a 5 year old who struggles with weakness balance. He gets cheast infections easily even ended up with pneumonia in February. He complains of pains in his legs and back often. He has flexible joints. He has bad weak eyes. Hes had physio to which we have been told was no good as he couldnt do it. He can't pedal a bike. He also swings one leg out and can limp by the end of the day. He really struggles with his left more than right. His symtoms get worse the more tired he is.
We have been told by several doctors they can't find anything wrong they say its just him.