When I'm asked what the most DIFFICULT part of parenting children with special needs is, I have a very simple response to that.
Dealing with getting appropriate healthcare and education!
Now, please don't mistake this for the DOCTORS, or the NURSES, or the TEACHERS or THERAPISTS! By all means, we have been blessed abundantly by those professionals that have worked directly with our children! No, instead I mean the insurance companies, people sending out paperwork (or rather, not sending it...) and the like.
Just today I received a large envelope in the mail for Wesley's sleep study happening this Saturday night. You know, 3 days from now. The first page says "IMPORTANT" in bold, capital letters and highlighted. Then it says "please begin filling out this sleep log 7 nights prior to your sleep study. This information is very important for us to accurately read the results of your study."
Now, let me think... what times did Wesley wake and what times was it another child over the last 4 nights? I HAVE NO IDEA! :).
In similar news, last week when I took Wesley in for his GI appointment on Wednesday we learned that Wes has H. Pylori. This was in a way a relief, since it is a treatable condition and means that there is a potential that after he heals up from this, that he may have a better time of getting adequate nutrients and a better food intake in the near future. YAY!
Unfortunately, our doctor, pharmacy, and insurance company just can't seem to get along :). Ok, really, it's just the insurance company, but all the other parties have been very involved as well...
At first, we had a script for Prevacid Solutab (dissolving tablets) 15 mg tablets since the 2 antibiotics that Wesley is on will cause significant reflux if not simultaneously treated. We were told that there is no longer a generic of this med, so it may be a problem with insurance. Then we got a call that it was 'stuck' with insurance and would be delayed.
I called the pharmacy... they said it's because it's a prescription for Solutab tablets that insurance kicked it back. Since Wesley is over 5, he's expected to get a caplet and swallow it.
I can picture it now... I put the caplet in his mouth with something else and he either chews it up or he gags, chokes, or just immediately vomits. The goal would be for him not to chew it. The others don't sound as pleasant, though!
Ok, so call the insurance company and the nurse at the doctor's office. Also called our insurance liaison to ask her how to get this done. Our insurance company told us to write to their Utah office and they'd let us know in about 6 weeks whether it would be approved. Really? 6 WEEKS before he can be treated for an infection he has RIGHT NOW?
Our insurance liaison was given a fax number for more immediate concerns (though the nurse wasn't offered this option). Still, they said we'd need to pay for the medication and "wait and see" if it was going to be covered in the future.
I really don't mind paying for what we're supposed to pay for. Really I don't. But if we're NOT supposed to pay for something, I certainly don't want to pay for it! After all, this medication is about $100. Not a cheap one by any means. Eventually we found someone that has used the caplets and opened them up and mixed them in to applesauce or something similar, so we called our doctor and said PLEASE, just rewrite it for the caplets so we can get this show on the road and get the right meds for Wes!
Next thing I know, the doctor has said he'd like it to be compounded if insurance won't accept it as a Solutab... Now I'm waiting for it to be called in, a full week later, to a different pharmacy that will compound the medicine so that we can give it to him as a liquid!!
I won't get in to the obstacles in the education system or difficulties therein right now. Medical is enough for one day :)