"Suffering the Slings and Arrows of Outrageous Fortune"

Posts tagged ‘insurance’

Good…???

So, I got word from the doctor’s office that Emily’s bone scan was normal. That good news was followed up with a cautionary statement that the doctor had not yet seen it when the nurse called; he had previously expressed concern that having it done at Reid would mean it would not be read properly and he would have to take steps to make sure it was. So, I am not willing to just accept ‘normal’ in this situation. We see him Friday and hopefully will be able to hash it out then. Also, in my skepticism, we will be getting a copy of the report so I can see it with my own eyes and have it for my records. Not that I don’t want ‘normal’ in this case. Normal would be a wonderful thing. Really. I just naturally doubt when any test my daughter has done is labeled ‘normal’. Also, I am aware that there can be a great deal of variation in results with the type of test Em had done, so the results could be less than clear.

Also, in equally unbelievable news -I just got a phone call from the wheelchair folks saying that Em’s scooter is in and we should be getting it tomorrow. Forgive me for my continuing skepticism, but I will believe it when it is in my vehicle and we are driving away. I should be more trusting but I just am not. Honestly, I had given up on it because I hadn’t heard anything about it and had even received a puzzling rejection letter informing Jody, Dr. Neilson’s genetic counselor at Cincinnati Children’s, that her request for a manual wheelchair for Em was rejected. That was beyond odd since no one at Cincinnati Children’s had requested anything for Em and they were not even involved beyond writing a letter stating that a wheelchair is often necessary for EDS patients. Furthermore, we already have a manual chair and, through Reid Physical Therapy, we were requesting a scooter. I have no idea what the point of that rejection letter was, but, apparently, it had nothing to do with anything.  So, good. I think.

Anyway, in 24ish hours, Em may be the proud owner of her own set of wheels. Pictures will follow if this is not all a great cosmic joke.

 

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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!

 

 

One step at a time

At the moment, we are more or less in limbo, trying to make progress but only able to take baby steps towards the goal. It is a little like swimming in molasses – you just don’t get very far!

On the vitamin D issue – still trying to decide which way to go. We need a new pediatrician, who can be our partner in dealing with all of the crap Em is dealing with but it is a matter of deciding where to go. I am leaning towards leaving the practice and finding a new group altogether, but we have to find out who is covered by insurance. We need to move on this issue but I have to find someone who takes Em’s bone health as seriously as I do and that may not be an easy thing to accomplish.

Still waiting on the scooter. It will be four weeks since we talked to the rep and made the decision to go with the scooter. I have no idea how long it should take to hear from insurance, but I am getting impatient – surely a decision will be made soon. A scooter would make a big difference for Em and we are getting tired of waiting. I will contact the rep if I haven’t heard from her this week to see where we are.

We have two upcoming doctor appointments that are on my mind:

October 26 we see Dr. Abonia, allergist/immunologist and mast cell expert at Cincinnati Children’s. We have waited a long time to get to someone who knows about MCAS and, from all I hear of Dr. Abonia, he will be the one. I am cautiously optimistic – I think he will be able to help us, but I am not counting my chickens yet! We have had too many rotten experiences to  go into this one blithely. And yet, I am hopeful that real mast cell treatment will be offered. We shall see.

On November 6, we go to the motility clinic at Cincy. I am barely cautiously optimistic about this, to be honest. I know we need to a GI specialist and, since poor motility is the issue, seeing a motility specialist makes sense. Ideally, we will find a sympathetic ear and help maintaining her weight and general health. I would like a referral to a nutritionist – I could use some help making sure Em’s diet is as complete as possible, within the parameters of all of her food sensitivities and restrictions.

BUT… I am not looking forward to the testing they will need to do, I worry they will not take her problems seriously because she is maintaining (at the moment) and I KNOW they are going to want her off of most of her meds, since many of them can contribute to the problem. We have already started switching her to Tramadol in place of Norco, not sure it is going to help with the GI issues, but that is one easy switch we can make. I am fine with considering reducing (but not eliminating) some of the others – maybe the amitriptyline could be carefully reduced. I am pretty worried about this. Taking away her pain relief is just NOT an option.

I am also worried that they will push for Em to go gluten free. I don’t think gluten is a problem for Em and I am really concerned about removing another group of foods from her diet without evidence it will help and not hurt. Many, many of my friends have gone gluten free and I know it is the current thing but also I know it is not something to do without very good reason. So, I will not do it on my own and I will be very, very hesitant to go along with this recommendation.

I guess I am worried that 1) they will not take us seriously, blowing us off and then where will we be? and 2) they will take it too seriously, ordering invasive, unpleasant testing and throw unnecessary, unhelpful solutions at us. So, pretty much my usual new doctor worries but the stakes are pretty high on this one. We will hope for the best, being prepared for the pitfalls that we may find. It would be lovely if this appointment was awesome, but I will just hope for ‘ok’ and be happy with that, if it happens.

It seems like so much of what we do is wait and that is terribly frustrating. And yet, we are in the process of making progress – one little step at a time. That is something I should be thankful for and I need to remind myself of once in a while!

 

 

The Big Piece of the Puzzle?

Jigsaw puzzle pieces

Vitamin D: One [BIG] piece of a complicated puzzle (Photo credit: Wikipedia)

I promised that I would post about Em’s Vitamin D test results – since, I just got the results from the doctor, I can now share what I think is a huge, gigantic, crucial piece of the puzzle for her health.

You are probably aware that Vitamin D is vital, being deficient is bad. Severe deficiency causes rickets in children, osteomalacia in adults. The long list of symptoms include bone pain and fatigue, muscle weakness, numbness and so on. The optimal range is 50 to 100.

Em’s Vitamin D level is 6.1. Not 61 –  six point one. That is not low, not even simply deficient. That is severely deficient and, because she is having bone pain, her pectus carinatum is worsening, her ribs are wonky and she possibly is developing scoliosis, I think we may be looking at a diagnosis of osteomalacia or maybe rickets. I know the cut off is the closing of the growth plates so Em is probably beyond that but I just don’t know for sure.

The really great news is this is reversible with large doses of vitamin D to fill up her tank and maintenance doses to keep the tank topped off. The pain, fatigue and bone changes are reversible. I don’t love that she is dealing with this, but at least this one is treatable!

She was probably low for some time, but I think most likely this has become severe in the last six months – probably since her surgery in April and the resultant GI issues. Her absorption is almost certainly very poor and definitely got worse after surgery. Her diet has definitely suffered – between the food sensitivities from MCAS and the poor appetite from gastroparesis, she eats poorly. Although she does work to eat as well as she can with the limitations she has, it is just not enough to supply her body what it needs. Add to those difficulties the fact that she is on meds that restrict her from sun exposure and that she has autonomic dysfunction and cannot stand the heat and you get a bad situation.

So, the doctor who basically poo-pooed my concern about vitamin D deficiency causing fatigue on Thursday, today is very concerned. He wants to toss her back to her pediatrician to really address the issue properly, as it is out of his area of expertise – and she is a child with a complicated medical condition. I am strongly leaning towards giving the geneticist a call and seeing what they suggest. (Bless his heart, Dr. Neilson also poo-pooed me about vitamin D causing her problems, but I think he will be able to steer us where we need to go.)

I think we need an endocrinologist who specializes in bone metabolism. And, we need to rule out thyroid issues and check up on the issues the allergist saw in the blood work this past spring. So, I am going to push for a specialist. We are going to end up at Children’s – either Riley or Cincinnati. I would prefer Cincinnati and I think we can now make a strong case that this is related to the EDS, so maybe we can convince insurance that it is necessary to go to Cincy. And there is BCMH that will help as well.

So, we will see what happens but I just feel like this is a huge piece of the puzzle. If we can address this, she could actually start feeling good again. How great would that be? So, while I enjoy being right and being able to tell a doctor ‘I  told you so’ ,  I am absolutely thrilled that we are on to something that could make a huge difference in Em’s quality of life.

Visit # 1

We had two doctor visits last week – and both were fine, good even. I am very thankful for that because life is still a bit crazy here and a bit of ‘nice’ was much needed:  my grandfather was taken off of life support earlier in the week and is slowly passing, lingering longer than anyone thought possible. We know we are facing a funeral in the near future but just don’t know when it will be. This after we buried my grandmother (his wife) on the 5th. It has been a very long couple of weeks.

The first visit of the week was on Thursday, with the pain doc. I won’t bother to talk about how it had to be rescheduled twice and how Em had to get up early, then he was running late and we waited for over an hour to see him. It happens and was a pain (no pun intended) but not the end of the world. Just more to deal with in a very long week.

Anyway, we talked about trying to replace the Norco with Tramadol and saving the Norco for true emergencies. Not sure how that will go, but it is worth a try. The pharmacist pointed out the drug interaction between Tramadol and Flexeril – which I already knew about. I am nervous and concerned, but I have also read that a lot of people take both and are fine. Of course, I am also nervous and concerned about her taking Norco round the clock so we have to find what works best and weigh the side effects vs the benefits of both.

For the moment, with things so crazy around here, we are just going to leave her med routine as is and just use the Tramadol for breakthrough pain for now. Don’t know how well it will work – but she needs something and we have to try. There are too many times when she dislocates badly and or injures herself,  is pale, sweating and nearly vomiting from pain and I have nothing more to give her to relieve her pain. It has been incredibly frustrating and I pray this switch is a real solution. If the tramadol seems to help breakthrough pain, we can work at switching the two meds and see how it goes. [Em got hurt last night and ended up trying the Tramadol. She said she thought it helped with the pain but made her very sleepy. I hope that it will be like all the other meds she has tried and she gets used to the side effects quickly so they aren’t an issue. But, I was pretty encouraged in that she thought it helped with the pain a bit, so we will see.] I have heard that the extended release form of Tramadol is more effective as a long acting med, but the doc said insurance may not like that so, we will try the short acting form for now.

During this appointment, I also discovered that our insurance will not pay for the compounded ointment that EDSers are finding so helpful. I am not a bit happy about that, because I know it could help reduce the amount of meds Em has to take. She could have more relief with fewer side effects. So, we may have to fight and try to get it approved. However, that battle will have to be postponed for another day – too much on the agenda right now!

The doctor ordered blood work to test her Vitamin D level, at my request/demand. I am quite sure she is deficient – probably severely – and that that deficiency is an important source of her pain and fatigue. We should get those results soon and I will post more about that then because I suspect it is going to be a big piece of the puzzle.

Bottom line, her pain is being managed pretty well – in fact, these days, if you ask her how she feels, she is more likely to say she is tired than to say she is in pain. Fatigue sucks about as much as pain, but we have options to deal with it, so we are definitely moving forward. He listened to our concerns and clearly is willing to work with us to make it better. We see him again in 3 months. We will spend that time ‘playing’ with some of her meds and trying to find the best routine we can. I wish there was a clear and easy formula for EDS pain, but it is all trial and error – that we have a doc who is willing to work with us is beyond wonderful! (So, if he is running late once in a while, we will happily deal with it!)

 

Wheel chair eval

We met with  Lynn (the wheel chair rep) yesterday afternoon and we are getting closer and closer to making a decision on what exactly we are going to get. (If insurance agrees, which is becoming my big worry at the moment. But, there is nothing to do about it today, so we will cross that bridge when we get to it.)

I am hoping that I can convince Em to write a post ‘reviewing’ each of the options she tried yesterday but, until that happens, I will share a bit.

The rep, as planned, brought a manual chair with E motion wheels, a nice power chair and a scooter. Em didn’t want her to bring the scooter because it wasn’t even an option as far as she was concerned.

Guess what Em loved… Yup, she loved the scooter. So, yeah, bless Lynn for including it in our options because it just may be the answer.

The E motion wheels would be great if you had no upper body issues – but we all know EDSers have all over problems. So, Em definitely could propel herself easier, but still fatigued pretty quickly and the wheels were very touchy. It would definitely take time to get used to them. The wheel chair itself was pretty comfortable, but the back was too low to support her back and shoulders sufficiently. She ruled it out almost immediately.

The power chair, well, it was nice for what it is – which is a big, ol’ power chair. The most positive thing about it was the back would give her excellent support and it turns on a dime. It is big, though and wouldn’t be very practical in the house.  She could probably use it, but I am not sure it would fit in her room and I know she would not be able to turn around in the hallway with it. She tried it in the wet grass and got totally stuck – so it isn’t exactly an all terrain vehicle. And it is really a lot of chair for someone who doesn’t need it all the time.

But. The scooter. She loved it and immediately saw that it could be the answer for her. There are some negatives and it will only be an option if we can make some adjustments. The biggest problem is the back – again, it is too low to properly support her back. Unfortunately, it is not an easy fix as no one apparently makes a higher back for the size of scooter she is looking at. So, it may be a matter of customizing a back for her. If that can’t be done, it is a deal breaker. The other issue is the controls require that her arms and fingers to be under constant strain. By adjusting the arm rests and angle of the controls, she can rest her arms. But it will be an issue.

Of course, with the power chair, she has a similar issue – less strain overall, but if her right shoulder/arm/elbow/wrist/fingers are injured, she would not be able to use the chair. But, we still have the manual chair – in that situation, she would simply need to be pushed. So, there is no perfect answer: we just have to find the best answer and we are fortunate to have options.

And, Em was pretty brilliant in the way she went about her decision. As I said, she was immediately drawn to the scooter, but after being sure that it was the right choice, she back tracked and reconsidered the power chair, suddenly trying to envision her worst day and what she would need. So, the power chair is still on the table, if the scooter cannot be tweaked to work for her.

In the discussion about what her worst day looks like, we talked about this upcoming week that will be rough. 3 doctor visits and likely another funeral (my grandfather is being taken off of life support this evening, after collapsing the evening of  my grandmother’s funeral last week), plus Co-op.  Lynn said, just take the scooter and try it out this week. If it works for this difficult week, it should do the trick most of the time. So, we have a scooter to try out until next Thursday and, so far, it is great. Em has scooted down to her grandparents house a couple times already and has said she could easily go by herself. (That is called independence, folks.) We will try it in the house and see how it does. We will go shopping and see how it does. She can try it at Co-op on Friday and at her doctor appointments, hopefully that will make her life a little easier this week.

It is pretty exciting and I think it will give her so much freedom and independence. She is thrilled and so am I. I mean, our ultimate goal is for her to not need it at all, but until that day comes, it will be awesome to see her in charge of her own mobility.

We will see what happens, but I think we are on the right track and it is a huge blessing to be able to trial the scooter and be able to make a very educated decision in the end. Now we start praying that insurance cooperates and lets Em actually have a scooter now that she has made up her mind!

Decision Delayed

We had Em’s wheel chair eval on Thursday. We met with the PT and wheel chair rep and had a long discussion about what are the best options for Em. They started off from the assumption that a power chair is the only logical option (and, just between you and me, it really is. It just isn’t so easy to accept that when you are 13. Or at any age, for that matter.) So, when I saw Em shutting down a little, I made sure they understood that she wasn’t sold on the idea of a power chair. I was relieved that they took her feelings on board and encouraged her to share what she was thinking.

That led to a discussion about other options, chiefly ‘powered’ wheels – the rep was suitably impressed that we knew something about them and recommended e-motion as the best option. Unfortunately, even e-motion wheels probably will not be enough to make a manual chair feasible for Em. They are not a magic solution.

After a long discussion, Em agreed to give the power chair the rep had with her a whirl. The world actually didn’t end and Em was even almost enjoying the chance to ‘drive’. But, it still sucks and nothing will take that away. Bottom line, I think Em knows that a power chair is the best (only, really) option and hates that truth.

So, as a quite brilliant young lady, she made the decision to schedule another appointment with this rep, at which time Em will be able to try every option the rep has to offer: a manual chair, a manual chair with e-motion wheels, a power chair and a scooter. She will be able to try them outside on different surfaces to see how each does for her. It was a totally reasonable and wise request on her part. If she ends up with a power chair, she will have not have to wonder if it really was necessary because she will have actually tried out all of her options.

We will be meeting later in September – probably the 10th but will have to wait for the rep to confirm that date. Of course, Em is the one who set this all in motion and it is right that the terms are dictated by her – on one hand, we would like the perfect chair in her possession today, but on the other hand, taking our time and making the right decision is the best course of action.

So, no decision has been made and won’t be made for a while. It gives us all time to adjust to the idea of a power chair and get our minds around it.

Once that all happens, the battle with insurance will begin. Sigh. Something this difficult just couldn’t be made a tad bit easier, could it? I am assured that between the efforts of wheelchair rep, the PT, the pain doctor and the new geneticist we will be seeing, it will probably happen. But, I am not holding my breath that the path will be smooth!

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