Yesterday's Neurology Appointment

I love our neurologist. I am so sad to report that he's LEAVING. We will have one more visit with him before he goes.

Jack had a seizure free weekend and had one 15 - 30 second episode at school Monday. So far so good yesterday and today. He said Jack's doing well and adjusting to the meds and we're not at full dose yet. He said the small seizures are par for the course and to call him if things change.

I reported a major increase in appetite (not bad news by any means) and only having meltdowns when it's close to bed time. No major side effects for which I am grateful.

We saw him at the CP clinic and he said Jack has a contracture in his right hand and both legs. The leg contractures are not "fixed" and he recommended we have Botox and extra PT following. A few months back he referred us to the new physiatrist -- our appointment is Nov. 5th. She will manage Jack's spasticity (as well as our current ortho) and the new neuro will manage his seizures/meds.

He tried his best to get a multi-approach cp clinic started -- and due to red tape and MONEY it fell flat on it's behind. It's a big step in the right direction to get a physiatrist on staff and I am glad we have one locally so we won't need to travel two hours to CHOP. He said I should be adamant (aside from doing physical harm ) about using sedation for botox. He said due to money issues they just want to stick the kids with all these injections and not involve anesthesia. Sort of get 'em in and get 'em out -- who cares what the kiddo remembers or feels as long as it saves MONEY. Those are MY words, not his!! He said it makes him sick and he's going to go be a lawn doctor instead of a people dr. lol.

I thanked him PROFUSELY for his candor and help and wished him well. He said if he goes in to private practice he wouldn't see the need for us to travel "that far" he mentioned a place which isn't that far and I told him I'd follow him...lol, I swear I am not stalking him -- but a good neuro is so hard to come by and I told him that.

I am glad we see him again before he leaves so I can ask him if he's retiring or setting up shop somewhere else. Fingers crossed we can manage to keep him as our neuro!

The team watched Jack walk with his walker and said he really depends a lot on his spasticity. He has weak hips and this coupled with tightness is making him crouch and scissor slightly. They noted a huge improvement since our last visit on his motor planning and problem solving skills. I also told them how he's pulling to stand using finger-width ledges on windows, and door knobs.

Overall it was a fantastic appointment for information. After we see the physical medicine dr. we'll possibly do a targeted round of botox (meaning one location for one specific purpose) and it'll be in his right hand/arm. We'll see "what's left" tone-wise after the spasticity is reduced and go see a hand therapist for a proper hand splint.

As always, I'll keep ya posted. Thanks for reading!