Catching up…

It has been awhile since I last posted – nothing major has been going on EDS-wise and I have been busy with the usual life-type stuff, but an update is long overdue.

On the upcoming events list – the bone scan Dr. Abonia wanted Em to have is scheduled for Monday at 2:00 and the  appointment to do blood work to recheck Em’s vitamin D level is at 3:00, so it is at least convenient. As always, I am not quite sure what to wish for with this type of test…I would never be able to accept an ‘all is fine’ bone wise because I just don’t trust the radiologist to read it correctly and I have heard that bone scans can be notoriously inaccurate for EDSers. The best I can do is hope that any issues that exist are found – my prayer is always ‘if there is anything to see, let them see it’. With the bloodwork, I will be shocked if her level has raised at all. I mean, I want it to be normal, but I would be shocked if it has increased any significant amount with the little vitamin D she has been given. I just want someone to pay attention and give this kid the treatment she needs and deserves – again, same prayer as above.

Then, we have an appointment with Dr. Abonia on the 30th – hopefully, he will have the results of the bone scan by then. Also, I got an appointment with the doctor Dr. Garza recommended us to see at Riley. We see him Dec. 10th and hopefully will be able to get some steps taken to figure out what all is going on with Em. Not entirely sure about it, but it is worth a try I suppose. I waffled about it for awhile, because I would really prefer Dr. Garza at this point but the insurance issues tipped the balance and I finally just gave up and made the appointment.

As usual, insurance is the bane of my existence – a blessing and a curse. BCMH is a blessing  but a mixed one to be honest. I was advised to call and see if BCMH would cover diagnostic testing – an endoscopy, a bone scan. The fact that the lady I spoke to could not quite grasp the idea that Cincinnati Children’s was out of network for us or exactly what question I was asking for an answer to was pretty annoying but when she passed me on to a higher up who was way more patronizing than necessary (and obtuse to boot) I just shook my head in disbelief. After explaining the issue for the fourth time in 4 minutes, I was patiently told that I had to follow my insurance rules – if my insurance wouldn’t pay, BCMH won’t pay.

Fat lot of good that does me, since the experts Em needs are out of network and that is the whole point of BCMH for us.

Then the ‘helpful’ gentleman firmly instructed me to be in communication with our doctors about referring us to doctors our insurance would pay for. At which point, I explained, for the 2nd time to him and for the 5th time in as many minutes, that our insurance will pay for us to go to an in-network hospital, which does us no good whatsoever because the EXPERTS we NEED are at an out-of-network hospital which is why we need BCMH to help. Arggh. I gave up because this guy only dimly understood what I was telling him – I think he had a script he was following and by the end of the conversation he started to grasp that perhaps his script was not helping me at all, not that he could offer anything else.

When we ask insurance about covering these things we are told that they can’t deny or preapprove anything but they won’t pay if it is available in-network, although they have paid a reduced part of everything we have done at Cincinnati Children’s, and that when they deny us, we can appeal the decision. Which leaves us totally on the hook, if, in the end, our insurance refused to cover any specific test. So, we will be having the bone scan at Reid and an endoscopy, probably, at Riley. Yes, this infuriates me because all of this should be done by the doctors she is seeing at Cincinnati and the fact that she can’t directly impacts her quality of care. No, it probably isn’t the end of the world and all will work out but it still makes me mad.

So, you can see why I have been a little blah and not very motivated to write – although, now that I started, I clearly had plenty to say! I guess I bottled it up for long enough and, as usual, writing here makes me feel better.

Wrapping up for now – I promise it won’t be so long between posts next time – I just want to wish everyone a Happy Thanksgiving. I am so thankful for all you who read and who lend a virtual ear, for everyone who comments and shares their experience and advice and support. I am thankful for many things but the online network of EDSers is definitely on my list!

 

 

Possibilities

Got a call about that intensive therapy program at Cincinnati Children’s on Friday. Seems like Dr. Tinkle and Paula, the PT, feel that Emily would benefit greatly from it. Stephanie, who is the PT in charge of the program, said she was urged to get Em into the program because she needed it. I assume Rebecca, the OT, was one of those who were in favor of Em doing this program.

Anyway, it would be 2 weeks of twice a day PT, some pain management and psychology, and Child Life/Integrative Medicine. It would be a wonderful opportunity for Em – it could make a huge difference in her life. I mentioned her cranial instability/POTS to Stephanie and she said that they dealt with those routinely with this population, so they would manage.

The biggest concern is insurance: our insurance almost certainly won’t pay for it. And if it does, it will cover 60% at the most. There is no way we can pay for this therapy – the bill would be in the thousands.

I mentioned BCMH – which is a supplemental insurance for disabled kids in Ohio. It is diagnosis specific, so Stephanie is hopeful that Em will qualify. When I researched it, I found that Dr. Tinkle is on the list of approved doctors, so I am really hoping we can get this insurance. It would  basically cover things our insurance won’t cover, so that would be a huge help for us as everything at Cincinnati is out of network. It will probably be the difference between Em getting this therapy or not, so I am really praying for it to work out.

Stephanie said she would talk to the social workers there and they would look into it and let us know. I hope to hear from them soon – maybe today. The first available dates for the program at June 13 – 24, so I am doubtful that we will be able to do the first one. There is another one in July, so I am hopeful for that one.

There are a lot of questions we have – what about lodging, etc? Ronald McDonald House is across the street, so maybe that is an option. I would probably go and stay with her, leaving Andrew to go to work and Luke staying home. Em is trying to keep an open mind, now that she realizes we won’t drop her off for 2 weeks!

Trying to be patient until we know more…