Wheelchair Frustration

For almost a year now, we have been trying to get Soren a wheelchair.  His current chair has been on its last legs (or wheels) for quite a bit now.  It has a back center foot brake that is supposed to brake both wheels.  Around December this gave out on one side so we had to have a hand brake added on that wheel.  And Soren has grown significantly since we originally got this chair.  Of course, it had some growth to it.  But it's been extended as far as it can go.  Now he's just bursting out of it and really uncomfortable.

We got a prescription written and got pre-approval from our insurance back in October of 2015.  We then had an assessment by one company in November.  They recommended a molded seat for Soren and a headrest to keep him from putting his head forward.  While we were waiting for approval on this chair, I told the doctor who was assessing Soren for new leg braces about this new chair (because it was obvious that Soren was too small for his current one), and she looked very concerned.  She did not think this chair sounded right for Soren.  Instead, she recommended that we get a second assessment by a PT at Children's Hospital.  By now it was February.

In order to get Soren this wheelchair assessment, we needed a new prescription for the assessment and for the custom wheelchair as needed.  We got that in February, requested the appointment in March, and had the appointment on April 15th.  In the assessment, it was recommended that Soren get a very different chair then the one from the previous assessment.  So the paperwork was submitted and I was told that we'd have a new chair in June.

It is now, as you know, the very end of August.  And Soren does not have a new chair.  However, the chair has been made.  And it is safe and sound in Chatsworth.  Here's the problem.  While our insurance approved the almost $4,000+ chair, they didn't approve the "securement points."  These are the doohickeys that you attach tie-downs to when you travel in a car or a bus.  So, without the securement points, all you can do is wheel your wheelchair around your house or anywhere without using a vehicle.  And do you know how much these things cost?  $250!!!!  Yep.  They pay for the $4,000+ chair, but not the $250 tie-downs so the kid can actually get to school.  Brilliant.

So we said, fine.  We'll pay the $250.  No problemo.  But, of course, it's not that easy.  Soren also has Medical and CCS.  And the wheelchair company needs to bill them first.  While we know full well that neither Medical nor CCS will cover the $250 for this item, we need to wait for their refusal before we can pay the $250.  So the newest problem is that the gal at the wheelchair company is not the brightest bulb and has sent old reports to Medical and CCS.  Reports from 2014.  Not the lovely 2016 report we got in April.  Good gravy, woman.  Thus the process is taking even longer because Medical and CCS think we're banana heads!  And since we got the original approval from our insurance back in October, we're dealing with a ticking clock.

Meanwhile, there is a brand new, beautiful wheelchair for Soren sitting in Chatsworth that we can't get because the company won't let us pay $250 dollars.  Cause that's their policy.

Amy

Addendum:  I've been thinking about this more and it really chaps my hide.  Supposedly, the rational to the denial for the securement points by the medical insurance is because a wheelchair is to be used in the house.  WHAT?!!!  So people who use chairs are supposed to remain house bound?  Who made up that ridiculous rule?  And why hasn't anyone fought it?  Is there nobody in the medical insurance industry that uses a chair and cried bullshit on this?  A wheelchair is that person's way of getting around indoors and outdoors.  In fact, for Soren, he spends more time in his chair when he's out in the world.  When he's home he's under his tree looking at the leaves, or looking at his laser lights, or in a different chair he uses.  At school the rotate him between chairs to challenge him.  Without those securement points, a wheelchair is just a house chair that rolls.

VNS Update

It's been almost 3 months since Soren had his VNS implanted.  The surgery went really smoothly and Soren recovered well.  They started the device at a low setting.  Then we went in every 3 weeks to have the data downloaded and the device turned up a bit more, working on getting it to a therapeutic level.  We've been told to be patient.  That it can take up to a year to get the setting just right.  Now we don't go in for another 3 months for an adjustment.  

Overall, we've seen a definite decrease in seizures.  The VNS seems to catch Soren's small myoclonic seizures just as they are revving up, stopping them in their tracks.  And we've been able to use the magnet and wave it over the device to stop some of the bigger tonic-clonic seizures.

It's the early morning seizures that he has upon waking or right after waking up that are still breaking through.  They are really big and the magnet just doesn't stop them, no matter how many times we wave it over the device.  It's frustrating because those are some of Soren's worst seizures and it just starts his day off terribly.  But, again, we have to be patient.

The VNS goes on and off in cycles.  So on 30 seconds, off 5 minutes.  And we've noticed a funny side effect when it turns on during these 30 seconds.  See, the Vagus nerve is near your vocal cords.  And Soren's Vagus nerve now has a lead coiled around it.  So when the device is cycles on and he's talking, it makes his voice vibrate.  Soren happens to find this very amusing.  In fact, it's led him to making funny vocalizations and cracking himself up.  I wish I'd caught it on video.  

So, we still have a ways to go for better control, but we are happy that we took the plunge and got Soren the VNS.

Amy