Well August is really a month of appointments for Haven. Since our move we have been gathering all of her doctors and getting everything in order. So now everything is finally set up and the long waits for insurance approvals are done (for now). We use to not have to wait - but I can now give thanks to Obamacare for that. We only wait 2 months......not bad!
Next week she goes in for her lab work - she has to have her liver and sodium levels checked every four weeks due to the medications she is on now. Any changes and the doctors will need to alter her medication.
August 14th we go in to talk to Pulmonary - because with this insurance they need to check to see if she still needs to have a sleep study. It's too expensive so they don't want to do it without full understanding of ROHHAD since it's not listed in the books as a disease in this country yet. There aren't enough cases.
She was finally approved to have the growth stimulation test done. So we will do that on August 30th. it is a 6 1/2 hour test. So they will put Arginine in to her blood for 30 minutes that should trigger the growth hormone and then they will measure that every 30 minutes with blood withdrawals. She must be a 9.9 or less to be approved by insurance, if she is a 10.0 she will not be approved. It will take about a week to get the results.
We were also informed that Haven's IVIG is too expensive in the land of Obamacare. So they will no longer give it to her every 8 weeks. They won't even cover the labs to check if she needs it at 8 weeks. She will have lab work done at 12 weeks and if she is below a level of 200 they will give it to her. Remind you that a normal person is around 1400 and Haven has never been over 500 since 2009. So if she drops to 0.......but no one seems concerned because she hasn't been sick yet.
Did I mention that her medication is now triple the cost of what it was in 2009?????? We were shocked to find out that her medication is $30 each for a month supply - I have no idea yet what it will cost for her to do growth hormone treatments. Which is daily for mulitple years. I have been informed by friends that it is expensive and now hardly covered. Only to add that co-pay to doctors has also tripled.....WONDERFUL! If anything it has actually helped because we will not be visiting doctors unless we are absolutely dying. How can someone afford $35.00 co-pay for a doctor to honestly do nothing. Pay them so they can write a referral to a doctor you have to pay another co-pay for and most likely they are horrible and now you need to find another doctor. I've done that way too many times. Just not worth it.