Apologies for this long post but I thought I would let you know of our good experience at GOSH with the Neuromuscular Team:
Our child has had appointments with the Neuromuscular team at GOSH and previously with the team when it was based at Hammersmith Hospital. The team are excellent, it is one of the best neuromuscular centres in the country so you are in good hands!
We go there now on average every 6-9 months for a consultant review and physio review in the Neuromuscular Clinic. Our duaghter has just been diagnosed with Scoliois (curvature of the spine) as well so we now also have appointments with the Neuromuscualar Team in their scoliosis clinic as well now.
Talking about symptoms, I'll tell you about our child but I don't know if the symptoms are anything like your child's as you haven't said what they are. Our daughter is now 4 1/2 years old. She had hypotonia from birth and poor growth. She has gross motor skill delay, (can't crawl, stand or walk), polymicrogyria (unusual folding on the front of her brain) and has delayed speech. Her fine motor skills are good and she is very sociable. We were refered to the Neuromuscular Team when she was 2 years old as it was found in a routine blood test that she had elevated creatinine kinase levels (indicative of damaged muscles) and a electromyograph at GOSH supported this finding of damaged muscles.
I seem to remember that the first appointment with the whole Neuromuscular Team present (then based at Hammersmith) involved a lot of the team asking a lot of questions and an improptu ultrasound on her muscles. It seemed that they had a rough idea what the problem might be but a muscle and skin biopsy would confirm it. They wouldn't let on at that stage what they thought it was (in case they were mistaken). Our daughter had the muscle and skin biopsy and had physiotherapy assessments, etc all in this initial 2 day assessment of health and medical investigations.
We got the final diagnosis a few months later. In the mean time we looked on the internet and guessed it was probably muscular dystrophy (possibly Congenital Muscular Dystrophy). At the results appointment it sort of gave it a way a bit when they were introducing the people in the room and one of them was introduced as the the muscular dystrophy care advisor! It did indeed turn out that our daughter had Congenital Muscular Dystrophy. It was a bit of a shock but also a relief that we had a definite diagnosis.
I can't fault the care we have had from the Neuromuscular Team. We have had physiotheraphy, speech and language, dietician, orthotics support from them. The muscular dystrophy care advisor is great. The whole team has been excellent!
I hope all goes well with your appointments!