Friday, August 22, 2008

Medical update

Today we met the new neurologist.

When we were in Texas, we had a loose team of doctors who had followed R2 since he was born, but in recent years we had seen some turnover, and met some new docs and such. When we moved here, the pediatrician who is AWESOME sent referrals for all the services we would need, and everything was just lined up for us. That has been really nice, and we really like the Children's Hospital here a lot.

If you don't live my life, or one similar (as a parent of a special-needs kid) then the thought of liking a hospital may be a little weird to you. But if you know, you know. Children's Mercy here in Kansas City is pretty amazing. If we are going to spend time in the hospital or multiple clinics, this is where we would want to be.

Anyways, we met the first neurologist (brain doctor) in May, it was basically an intro visit. During that appointment, I laid out my concerns about Richy's behavior, and the seizure medication he's on. I am used to doctors figuring out that I know my stuff, and then genuinely listening. Dr. F was a bit distant, felt committed to sticking with this drug, and was unconcerned about the behavior issues (rages, self-hitting, tics). So off we went with our increased prescription and I decided to give it a few weeks and see if things stayed the same. They actually got worse, so I called back and basically got blown off. Which is SO not cool.
So I went to the head and arranged for a second opinion, which is what today was.

The new doctor is named Jean Baptiste LePichon. (echoes of little mermaid: lePichon, lePichon, how I love LePichon)
He is an extremely thorough guy. Not particularly warm, but he took pages of notes and really heard me out. I could tell at first he was a little peeved about me not liking Dr. F, but after a little he seemed to get over that and figure us out.

So we don't have a specific plan of action yet, he's leaving that up to me. But I can either a)change drugs entirely or b) add a drug to help with the behavioral issues, which might be a side effect from the current medication. I don't know which one I'm going to do yet, there are pros and cons for every option.

And we got some language, a potential diagnosis of Pervasive Developmental Disorder... one part of me shrinks from putting another label on Richy, and the other part is like, please, call it something so I can get some idea of how to work with him. I don't know a lot about PDD yet, about to do some mad Googling. I do know it's similar or connected to autism, which is no surprise. I've read enough over the years to see the similarities.

Anyway, maybe this is too heavy or medical for you guys... just processing the visit and putting it in words. Please pray for wisdom for us as we make decisions for Richy.


  1. R2 is blessed to have such an awesome Mommy who pays attention and searches for answers to enrich his life.

  2. I am really glad you shared, we will be praying for you guys for sure!
    Also - I just think you are very cool. I wanted you to know. I appreciate that you blog and are very honest, I just like you much!

  3. Wow, a lot to decide.. that's cool you care so much. I pray God will lead an easy way & answer!!

  4. Thanks for sharing your burdens with us. Praying for you!

  5. name some meds.... give more data....

    had a patient today who was having a high fever but no cultures were evidencing any, md's were puzzling WHY.... so, i started researching the medications.... her health history, etc. i think i'm like an Angela Lansbury....or a Diagnosis Murder star.... or...perhaps HOUSE? what's his name? i think he such an interesting character although some of the subject matter on that show is quite nasty...... anyway, whomever the writers are are quite ingenious....

    little R2 is such a sweet and perfectly special little guy..... very interesting situation.....

    i'll be praying for wisdom and guidance and peace and direction ... to be right before you.....

    Answers, Lord.... amen

  6. the best option right now is Zonegran, that's what we'r e planning on trying, MPC

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