Got a DX CP

1+tripsmom

I posted a few weeks ago about one of my trio showing signs of CP but the first Neruo saying no after MRI. Well we saw a new Neruo and she said yes CP right away. I am happy to have a dx but have no idea what to expect. She is 18 months does not walk but but just starting to cruise. She was delayed on everything gross motor and small still is. What do I need to know? What questions do I need to ask? What kind of drs does she need? I am lost any help would be great. We are waiting to start her therapies with the state program. We just moved to the Bay Area and we are struggling with getting her services started. So any information please and thank you.  

MaxandRuby

DS2 (3.5yr) has spastic quad CP, although I think it is more a diplegia or triplegia vs quadreparesis.  DS2's specialists are an orthepedic (he has AFOs), neurologist, developmental pediatrician (annual visit only), and a pediatric ophthalmologist (he has worn glasses since 10mos old).  For therapy he gets aquatic therapy (speech, PT, OT), land therapy (OT, PT, speech, feeding), and hippotherapy (PT).  By far he has come the furthest with speech and feeding and I am actually considering dropping them.

As for milestones, DS2 walks with a walker although not fully proficient and you still need to be within arms reach should he lose his balance. He army crawled at 1yr and 4pt (regular) crawled at 2yr. He started cruising at 18mos old; however, crawling is his preferred method of getting from point A to point B.  He is right side dominant and tends to forget about/not engage his left hand. Sometimes he will spontaneously but usually you have to verbally prompt him to use it.  He uses it more in a stabalizing way (which really is what typical people do with their non-dominant hand) but he doesn't have full function of that hand (at 3.5yr he still does a raking motion with that hand vs a pincer grasp). DS2 also has a wheelchair that he is learning to use. The wheelchair is more for going long distance since he doesn't have the endurance to do long walks with the walker.

What CP diagnosis did you get (there are a few different kinds)? Did the new neuro view the MRI?  I am not sure what you mean by what questions do you ask. Do you mean, what questions do you ask your doctor? Questions regarding possible future functionality (a doctor can't guaranty you anything)? Will you be doing private therapies in addition to early intervention?

twinkjk

FYI- You cannot "see" CP on an MRI. But you can see things in an MRI that could potentially cause CP. 

She should def still see an neurologist and it might be a good idea to get her in to see a developmental pediatrician.