Tuesday, June 24, 2008

Stander Drama

We're having a bit of unexpected drama. We're going through our insurance to get Reagan's stander (and feeding seat) since the Texas ECI programs don't have the funding for those sorts of things. Our PT was not expecting any complications getting it covered since most insurances have no problem covering standers because the benefits are well documented (while most insurances refuse to cover the feeding seats but we thought we would look into it just in case). There's a picture of it below...it's the Jenx Monkey stander. So the therapist contacted the company that sells the equipment and they checked into what our insurance was willing to cover and they found out the opposite...they didn't mind covering a feeding chair but were refusing to cover the stander. When I got home from therapy (another wonderful PT session) I tried calling our insurance and spoke to an extremely RUDE woman that wouldn't listen to a word I was saying. We kept going back and forth and finally I just hung up on her because she was IMPOSSIBLE. It's probably best if me and my temper stay out of these things. I'm hoping her therapist can figure it out. I just can't imagine our insurance (which has always been absolutely wonderful) not covering something that most insurances cover. We'll see. Reagan's seizures have been rough today. She's been having a lot of seizures after waking lately but I had no idea of real numbers, so I thought I would count them. Big mistake! She had 200 spasms in 1hr. They finally tapered off after that, thank God. But she did have another bout of them in the afternoon (I didn't even bother counting those). I spoke with the nurse practitioner and she wants us to wait until Friday and check her beta-hydroxybutyrate levels before making any more changes to the diet (lowering it to a 2:1 ratio). I don't know...it's going to be a long week if this continues. Please keep her in your prayers!


Heather said...

I have no words Tera. 200 spasms in one hour.Horrible for you, beyond horrible for Reagan.There has got to be an answer for her.My prayers are that the answer comes soon. Really soon.Kiss that precious child from me.

teresa said...

You certainly do not need the hassle with the insurance plus the increase in seizures. I am praying for the seizues to stop and the insurance company to come through for you. Teresa

Sophie's Story by Elaine said...

200 spasms in one hour!!! Have you talked to your neuro about this? I know you said you were going to start Vigabatrin after you gave the diet more time but is it really necessary to wait? My heart goes out to you and Reagan. I wish there was something I could do. Reagan is forever in my thoughts and prayers.