Cheyanne is doing TONS better. She still feels the need to have a nap after lunch for an hour or so and is still ready for bed about 7. Her attention span is short and her emotions are still out of whack. But thinking back to where we were a week ago - I feel so blessed to not be there!!
We have our next neurosurgical team doctors appointment on Aug 12. Then we will find out what they've learned and what our next steps are. And hopefully by then Medicaid will have accepted her and we will be that much more medically bill covered. This could get expensive. We are deciding and the drs figuring out which would be of greater benefit to her, between brain surgery and a vns device. I'll finish researching them and blog my findings about them later. Figure if I am learning I'll spread the joy.
We are also in a holding pattern for her hormones. She has had a few years where she hasn't grown or gained weight. The first no growth & weight gain was the first year she started having seizures. Since 2007 she has grown 2 inches and gained nothing. In November of 2009, her pediatrician put her on an appetite increasing medicine. We took her off of that in March of 2010 after she had gained 15 lbs! Yea! But we still haven't grown any - that I've been able to tell anyway. She is just about 2 inches taller than her 7 year old brother.
Anyway, spring of 2009 her pediatrician sent us to an endocrinologist (growth specialist dr) who ran her thru a bunch of tests. Everything was fine except her bone age was comparable to a 10 year old ( she was 11) but that was not considered abnormal. When we went back in December she had started "developing" ( of corse THAT has to be on time right?!?!) and so they put her thru another gamut of tests and found that her body is not producing enough hormones and her body is pulling what it needs from other areas.... Another reason why she might not be growing.
So since January we have been playing insurance games. She needs approximately four hours in a hospital where they inject her with different hormone supplements to see which one(s) her body will take. And test her blood to find out the combo. Luckily all this can be done thru an iv and the hormones are in pill form. They just do this testing in hospital for quicker results as well as if there is a reaction. Small chance of that but still possible. 2 weeks ago the dr submitted his 3rd request. I has to call our insurance this week to get approval on my need for physical therapy and had them check on the requests. According to their computers they have never received a request. Our insurance has done this numerous times... Anyway I got a direct fax # to the gal I talked to and had the dr resubmit a request to her. Got a call the next day that it was received and we should get an answer within 10 days. So... Waiting... It's just great.
We did get Medicaid paperwork submitted and they contacted us for proof of many things. Good sign right? Social security denied her benefits until she is 18. Nice huh! Oh well.
I just don't understand insurances. Our neuro team wanted to get chey into an MEG machine. This is like an MRI but of brain waves instead of mass. There are only 12 of these machines in the world - one of them happens to be here. But united health care considered that to be "experimental". Even after rebuttals were sent with medical journal articles and resent studies proving different were sent. But UHC WILL cover a regular EEG ( an hour study), an MRI and a 7 day hospital stay EEG study. Because that is sooooo much better and cost effective. Dumb. Just dumb. .... But at least we have insurance. I should stop whining. I just hate seeing cheyanne put thru all this when there is something else better.
And I wish they could just diagnose the problem. Kinda tired of the 9 years of " we think" ," our best guess", " let's try". But I have to keep reminding myself - and chey- that this is still a new field of study- respectively. And just like how everyone thinks and acts differently, everyones brain works differently so the drs can only guestimate. But when it's your child - all you want is solutions and happy healthy answers. Don't they get that???!!??
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