Thursday, July 18, 2013

A Day in the Life of Neurofibromatosis

Yesterdays appointment almost - literally drained the life out of me.  While I feel extremely blessed to be surrounded by a team of doctors who know about Neurofibromatosis...I am - at the same time, surrounded by those same doctors, who fail to truly TRULY understand it.


Is that too much to ask?  Come up with SOME solution....Make it so I'm not walking out of EACH and EVERY appointment more frustrated, than when I walked in.  I am sure that these doctors get as frustrated as I do, but how do I explain to my kid, that nothing can be done to help her?

We spent EIGHT hours at the hospital yesterday.  Bailey was poked and prodded.  Xrays, blood draws, orders for MORE medication....MORE physical therapy--A change in this ....A change in that.  But no solutions....No "fix".  ANOTHER band aide.

Bailey's Kyphosis is....In the Drs. words "pretty severe". That is, for a 17 year old girl.

In almost EVERY article I found about Kyphosis, it was about the elderly.  Even of our doctors, claimed this to be predominantly an "old person's" condition.   In his words..."Her X-rays look like that of a 70-80 year old."

Bailey's "hunch-back", hasn't really bothered her.  She's a pretty laid back kind of kid.  She has dealt with the massive - overwhelming amount of doctors and appointments wonderfully.  She says she no longer feels the "pokes" during blood draws, and pretty much tunes most of the medical drama out.  

For the most part, this has been good for her....But, soon she will be 18....I am trying to teach her to take some control over her own health care...And she doesn't want any part of it. "It's too much mommy." she tells me.

I hear ya sweetheart.  It IS too much.  Too much for ANY person to have to deal with.   

We were seen yesterday by a team of doctors, very interested in Bailey.  This excited, and overwhelmed me.  

With Bailey's Neurofibromatosis type one....she also has Acoustic Neuromas (A Neurofibromatosis type 2 type tumor)  Having both NF1 and NF2 has been called "Incompatible with Life", by some doctors.  "A one in a billion chance".  Lucky Us, eh?

While this "issue" fascinates our team of doctors, all they seem interested in, is studying Bailey.  I know that's not TRUE....They Do care....But it sometimes feels that way. 

No fix.  No cure.  No answers of WHY!

Bailey's scoliosis, is common for someone with NF, and isn't that bad.  But the scoliosis, along with Kyphosis, has made Bailey....What was it the Physical Therapist said...?  Oh yeah..."A FUN PATIENT."

Fun?  Not for Bailey.  She lives with constant, and I mean CONSTANT back pain.  She's been on several different pain medications, all of which knock her out, or make her sick.  Our most recent prescription for pain medication was TOPOMAX, which I personally took for almost a year, and re-named the stuff "DOPOMAX", because it caused me to literally act like a zombie.  (Now...I like zombies, but not enough to become one...Or have my kid become one)

When we met with Bailey's primary doctor, he quickly took Topomax OFF Bailey's list of new prescriptions.  This medication may work for some....But according to THIS Dr., it was not a good fit, as Bailey is already taking a number of other things, and didn't want to take the risk of complicated interactions.

In general, we have doctors who listen AND hear us....And this is a good thing.  We didn't necessarily leave the appointment with bad news, or a drain of hope.  We left knowing that the doctors are TRYING to help.  Without some magic wand ... NF is going to have its ups and downs.

If we have to do more tests, more therapy, more MRI's....Than so be it.   Advances are being made all the time...And who knows....Maybe one day....All the tests, scans and blood Bailey has been a part of, will one day be a part of some kind of treatment for NF? 


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