Thursday, July 29, 2010


Akila saw a Psychiatrist today for the first time. I really liked this lady, what a relief!! Learned some really good stuff, and that we are way under medicating. Have lots of wiggle room and she mentioned the option of a Ritalin type of a patch that works for 21 hours. So you don't have that 3 or 4 pm crash where she turns explosive. Bummer, is that we have to prove to our insurance company first that all the other options don't work first.

So we are starting Concerta, a slow release form of Ritalin (I think). Also learned that one of Akila's meds for her Cyclical Vomiting Syndrome might be confusing the enzymes in her liver as it is the same one that metabolizes the Risperidone. The Pediatrician and I were thinking of stopping the stomach med as we have not had the vomiting issue for over 2 years now. We will stop it as we can always go back on if we start with the vomiting episodes again.

This Dr. was great. The best part, was that I got a really good sense that she gets FASD, and you FASD parents know what I'm talking about. She asked me how much I know from an intellectual stand point about FASD (her way of saying she knows I am living it, but have I read up and learned all the junk that I have been learning by books, workshops, conferences, blogs, etc). I said I was fairly well versed in it. She said good and that she gets concerned that kids like Akila will come out of it with 88 different mental health diagnoses when it really comes down to the alcohol. She then explained how it is the primary disability and all the rest secondary ones, and that basically ALL the behaviors we are struggling with, are due to the prenatal exposure. I know that for sure!

It was kind of nice that she shared this with me even though I knew it. She also told me to feel free to make an appt with just her and I (no Akila), if I ever wanted to talk without Akila around and that was great! I always find it awkward to talk about the child so much in front of them. Especially because during an appt like this, you mainly are focusing on the problem behaviors and I would think it would sound intimidating to a little kid. She was playing, and did turn to give me an evil eye and silently mouth to me that she hates me. Lovely.

As many of you know, I love Children's Hospitals and Clinics. I have never been very impressed with their psychological services though. So I heard of this Dr., Dr. Elizabeth Reeve through a woman who use to be her neighbor and said she was suppose to be a Pediatric Psychiatrist expert and she had been featured on shows like 20/20. I looked her up and she looked great on paper- she is with Health Partners. I called to make an appt, they said she likes potential patients to email their bio including meds and a few key points. I did this, and she emailed me back within an hour and said to call and make an appt. I called, and got an appt for 2 1/2 weeks later. It would have taken me months to get an appt at Children's. I was impressed immediately.

So, we have one more specialist. But she likes to email and I really appreciate that. I tend to work most after 10 at night. We will start the Concerta tomorrow. Hoping it lasts longer, it should! It was $57 compared to the $5 for Ritalin. Ugh. Still waiting on TEFRA to see if she will be getting on MA. Ridiculous process. The SMRT (State Medical Review Team), had sent the junk back in the spring and wanted a more recent neuro-psych exam. This is why I had to bring her back in for that testing (which costs over $2,000, we pay 20%-do the math!). I would like to say to these Dr.'s, does FASD and Turner Syndrome go away? Could she have been cured in the 3 years since the last report? For real, give me a break. We are running out of money!!!


Kari said...

She will be a great resource for your family! Hey, wanna go halfsies on a bunch of lottery tickets and split the winnings to pay for all the stuff our kids need?!

Julie said...

I have heard such good things abut Dr. Reeves. We have one on the patch and it works well for her....but I think we still need to tweek the dosage. I didn't know that Akila had cyclical vomiting syndrome--McKenna does also. It took us years to get docs to listen. We will have to talk more... we have so much to catch up on! I think a mom's night out should be in order!

Anonymous said...

Oh the paperwork is a huge pain, I would love an assistant to do it all for parents! In case you haven't tried this already, I think under SPED laws if you ask a school for a neuropsych they are supposed to pay for it every three years. Ours pushed back a little but I said the doctor said to ask for one and then they did it.

the johnson crew said...

i am glad you were able to get in to see her. I hope you can get better medical coverage. what a mess.

Hilltrain said...

How encouraging to have an expert who really gets FASD!

Linda B said...

Oh shoot-this reminds me that you asked about a psychiatrist! Sorry I didn't get back to you. I'm happy you hooked up with this one. Andrew's pediatrician (before we adopted him) is a neighbor of hers and told us to get in touch with her. I was burned out with driving those distances so never did. Hallelujah for doctors who know FASD and are good supports!