Disappointing Neuro Appt

Remember that “rush” neuro appointment I set up a couple of weeks ago?   We had our appointment today at 3:30 pm.  We didn’t get into a room until 4:30, and the doctor didn’t come into the room until 5:05 pm.  We left the office at 5:17 pm.   See where this is headed?

We told her everything that has been going on over the past weeks from us noticing Hannah’s movement disorder getting worse around the holidays to her being really sick the past few weeks and the double-antibiotics, etc.   I told her about my concerns her movement disorder and how I wanted to work on getting a better handle on it.

Her reply?  “Let’s sit on it a month and see where we are at.”    Huh?!

It wasn’t just that part that was a disappointment.  Hannah’s nurse and I were rehashing the visit and conversation, and the more we talked about what was said, the more angry I got.

When we told her how sick she was and that we “almost went to the ER,” her reply was, “You should have gone to the ER immediately.  If you see any decline in Hannah, you should just go straight there.”   Um, no.  You don’t talk an already immuno-compromised child with strep and trachiitis to the ER and expose her to other things unless you have to — as per her pediatrician (which I agree).  There was nothing the ER would have done that we didn’t do — Motrin and keep close tabs on her.  Had things turned, we would have been to the ER in a heartbeat.

She also made the comment, “Whenever Hannah gets sick with something like this, there will be skills lost and a tougher recovery.”

When I asked about medication adjustments, she said “Well, we don’t have a lot of options.  You don’t want to put her back on Haldol, do you?”  Again, huh?!  Of course not!  This decreased her seizure threshold and was a total nightmare to wean off of.

I asked about the Klonopin — could she have become so used to it that it doesn’t work anymore, hence the increased movements?  Could it be that her dose is too low, and she needs more?   “Yes, that could be.”   That was the answer to both of those questions — either the Klonopin is completely ineffective or it is just too low of a dose?

We felt completely rushed during the visit.  She made the comment that she was overbooked that day and that she lives 80 miles away and has to commute.  We were obviously once of her last patients of the day.  She examined Hannah for less than a minute.

So, she wants to see where we are in a month and then start increasing the Klonopin.  That is “the plan.”   (Along with getting a Keppra level to see if Hannah is therapeutic yet).   A month can be a huge amount of time for Hannah, especially if her movement disorder continues to increase.

My plan?   Call the third (and last) pediatric neuro in Vegas and set up a consultation.  I don’t expect someone to have a complete understand of what is going on with Hannah, but I want a doctor who will at least look at Hannah as a patient and really consider what is best for her.

I wish, wish, wish we could get Hannah to see one of the pediatric movement disorder specialists in Cali.  But getting Hannah there is going to be so difficult, especially since we can’t drive and can only fly.   But we may just have to bite the bullet and do it.