the neuromuscular specialist we saw said he doesn’t think our 2 year old has a metabolic or mitochondrial disorder. he said he has slight spasticity in his lower legs, which is linked to the mild signal abnormality the MRI showed in his brain. he called it a static encephalopathy – in an email that he sent to me, copied to the neurologist who ordered the MRI and the geneticist who diagnosed our son’s genetic disorder (22q11 duplication).
i looked it up – that is Cerebral Palsy.
which explains why he had a motor delay, speech delay, is still drooling constantly and seems to keep his tongue out all the time, trips over one foot regularly, same leg collapses at least once daily, has an uneven gait, etc.
i don’t know why these docs don’t just tell the parent what the diagnosis is, and put it on paper. why was i the one who had to figure out – hey, wait a minute, um, maybe my kid has CP. shouldn’t they be telling us that, AND hooking us up with supports?
seriously. WTF.

Our developmental doctor (a doctor of physical medicine & rehab, or PMR) says that it’s important for insurance to be more specific than just “CP” and I suspect that means many doctors forget that they need to be more helpful when talking with parents. I *love* our PMR – he’s great with my son, and always both gentle and straight up honest with us.

My daughter has CP with static encephalopathy. She is 16 and over the years, what doctors have said really conflict with each other. We’ve actually gotten more help from her chiropractor than the countless other specialists we work with. She goes to one that practices The Gonstead Technique. He focuses on opening up the neural pathway in her brain stem. She has gone from not being to stand upright, jump, skip or run to being able to do all of those things. Another person that has really helped us has been a Clinical Pharmacist. He has made a huge difference by helping us with diet, supplements and exercise. 95% of the people that she has seen over the years haven’t done a lick of good and just been major time wasters. It is really hard to get connected with any sort of support or professionals that understand what needs to be done. Instead, it feels like my daughter is some big science experiment for most doctors.

and BTW, thanks everyone for the thoughts and info. i hate the medical system – it is so so poorly put together – i don’t know why these people can’t work together and be consistent.

shelley, i want to pick your brain – we’re in ontario also, near toronto. i’m trying to find a centre that will do real gait analysis. i read a book on CP by Miller (http://gait.aidi.udel.edu/gaitlab/staffMiller.html) who is my newest medical hero. he speaks to the difficulty for parents not being able to have an actual diagnosis, and the resonsibility in the medical system to help alleviate family stress by being willing to make these labels and faciliatate treatment. he also talks about gait analysis, determining whether surgery is necessary, and a lot of stuff that i can’t take in on first scan.
do you have any recommendations as to where to go to find an experienced ped PT? we just got some gross motor equipment for my duaghter who has gross motor issues with autism, and the little guy has big whopper bruises now as he is reckless. i just need to know what exercises to encourage for him so he can improve his stability, and get that leg working a bit more reliably.
and honestly, if surgery is needed i’d like to find someone like miller to help us determine what/when/how/etc.
thanks for your post.