Steroids...Here We Come!

Our appointment on Thursday was at 2:20. We actually saw the doctor at 5:20! It was a LONG day... Lauren was there with me which I am VERY thankful for. This is not a one woman sort of adventure.

I had forgotten that this hospital has a real, full-fledged Starbucks in it. A steaming caramel machiatto took the edge off the 3+ hour wait. Although the wait was long, I was really ok with it. We've waited 2+ hours before, so sadly this is more of a pattern than an exception! I kept thinking,"About all we can change is our attitude." There were so many sick kids around... How could I begrude a doctor who was trying to care for so many? I'm sure he wasn't playing video games in the back.

And despite the waiting, I can see beautiful things around me. I see moms and foster moms sharing ideas on chewy tubes and helmets. It is an unexpectedly beautiful scene. All these parents waiting and caring so patiently for their children (some very big now) who can do so little for themselves. The cheerful greeting of the front desk staff and just generally encouraging atmosphere. If that doesn't inspire you, I don't know what will. These parents are heros! Every time I'm around them (especially in a group like this), I feel so honored to be counted as one of them.

__________

Wednesday night, Oliver started to "break through" with his seizures after a solid week or so without any. The thing is, Ativan (the drug that probably made this seizure-freedom happen) is habit forming, and over time you need more and more to get the effects. This is why it isn't a long-term fix.

There are only two meds (from my humble calculations) that we haven't used to fight the seizure monster. We met with the new nurse practitioner before Dr. Mikati. She was trying to catch up on the over a year that we've been away from Duke. She was very nice and looked like a Barbie Doll. One of the bad things about waiting 3 hours is reaching the point when the doctors and nurses are stressed. They know how far behind they are, and it shows in what they do.

After trying to fill her in on the WILD ride that has been the past year, Dr. Mikati came in. He still has the same old-school doctor's bag that is monogrammed. After some small talk, he suggested we try steroids before the VNS. I wasn't expecting this, and yet I remember we talked about this with him in April 2011. There are 2 options for this, with one being significantly more expensive: Pulse steroids vs. ACTH. Pulse steroids requires a 3-5 night hospital stay. The other is ACTH, which requires me to give Oliver shots 1-2 times a day. If we do ACTH (which Dr. Mikati prefers because it usually is more effective), it will cost well over $100,000 for 8 weeks of shots. Many insurances just say "no", and ours could be one of them. It is "wait and see" regarding their answer. There are serious side efffects to each of these, which I am a bit stressed about. This is the reality of the situation. I am most concerned about the possibility of increased aggressiveness and sleep disturbances. Other kids we know on this have began to look rather swollen. These doses of steroids aren't like anything the average kid should EVER be on. They are intense! If you want to read more about them, go for it! I don't want to bore you with all this medical talk.


I spoke to the secretary Friday and I am hoping next week to have dates for the next steps moving forward. I think we'll be driving up and down I-40 quite a bit over the next few months. We want to get moving ASAP, since Oliver has been on Ativan for so long.