Jackson's neurologist appointment

The appointment was in Milwaukee. I don't know if I ever blogged about why we don't go to neurology here anymore, but to make a long story short we get much better treatment up there. I never really cared personally for his neuro there but he always seemed to treat J's seizures effectively so I never pushed to switch doctors. There was another doc that I met (who happens to be the head of the epilepsy program there) when we were inpatient doing long term monitoring and I would love to switch to her. Unfortunately I overheard someone scheduling an appointment with her while we were there and she is scheduling already for summer 2011!!!

It was an interesting appointment. I had an appointment scheduled for last summer but it was right after we moved and I didn't feel any pressing need to go so I pushed it back to winter. Of course, it stormed the night before the appointment and no way I was driving up there in that much snow so we finally had our over-due appointment.

Last spring, Jackson was going through some testing through an adult neurologist at an affiliated hospital who specializes in dysautonomia. Some medications were tried and failed and then they said we should follow up with peds neurology. The person who was supposed to call us never called us, and then we got busy moving, so we never followed up.

I asked our neurologist about it when we were there yesterday. I had tried in the past to get him to help out with the autonomic issues Jackson has but he has never been interested in treating anything besides seizures. He looked up the records while we were there and saw that there was one more medication that was recommended (verapamil) that we had not tried so he rx'ed that. Unfortunately the pills are too big to split for the dose Jackson needs, so we have to find someplace to compound it.

He also said that the other neuro had said we could do a skin biopsy to check for the presence of sweat glands (he does not sweat) and if there are some present we could try a cholinergic medication to possibly help him sweat. I have problems with this.

First, he is already on an anticholinergic and I have concerns that the 2 meds will cancel each other out.

Second, I do not want to put him through a skin biopsy unless there is a good reason to. He went through all that autonomic testing for what I thought was a good reason, but it just turned out that they were trying to see if the issue was a primary dysautonomia or secondary to his brain injury. Well, the geniuses came to the conclusion that it is secondary to his brain injury. Which I could have told them. Because it's pretty obvious to anyone who has any kind of common sense. So therefore, if the dysautonomia is secondary to his brain injury, would it not be a logical step to conclude that he does indeed have sweat glands, that they did not just one day disappear? Does he really need to give up pieces of his skin to figure this out?

Well, both of these reasons seemed to confuse the neurologist. I never really thought of him as not too bright before (just lacking in people-skills) but now I am questioning this. Although, after I told him both of these reasons, he did seem to agree with me on both issues...but it just took a while for the gears to turn. Plus he did not know that robinul is an anticholinergic which is somewhat frightening to me.

So now, even though she is booking for next summer already, I am thinking hard about making that switch.

Some good news!

I am happy to report that not only will Jackson be starting up respite again next week (his previous respite worker's last day was last Monday) but it will be his old respite worker, Kerry, coming back to work with him! I am excited because she was just great with Jackson personality-wise as well as being extremely competent as far as caring for him. His last respite worker was lovely and also very competent but she was a more mellow person and Jackson is more of a rough and tumble kid.

When I told Jackson she was coming next week he gave a big smile!

Not much to report, just living life.

And my computer is dead so it is not as convenient to update.  I have to get a new one since it is just as much to fix my years old one.  But right now, there is no money so no computer.  Hopefully soon! :)

Jackson's class had a trip to the high school to go swimming in the pool there.  They said he liked it a lot but only wanted to swim about 20 minutes.  I am guessing because he got cold.  He needs a super warm pool to be able to really enjoy it for more than a few minutes. 

He has a somewhat overdue neurologist appointment coming up this month, an orthopedic appointment in May, and I should make a physiatrist appointment for him soon as well.

Zoe is just exploding with words.  I tried to estimate how many she has now and it is easily over 100!  She is constantly astounding me with what she knows.  For example, we were reading a book and she loves pointing to different things in the pictures so I can tell her what they are.  She pointed to a clock so I told her it was a clock, then she noticed there was a bird on the clock so I told her that was a bird.  Then she says "cuckoo cuckoo"!  How in the world does she know that?!  I am guessing from a TV show but it really surprised me!  She is really smart.

sigh.

Once again it looks like we will be without respite.  Our respite worker is moving out of the country kind of unexpectedly.  Our last day is Apr. 19.  Hopefully they can find someone else soon, but I doubt it.  Bleh.