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A Long Overdue Update

Sep 01, 2011 - 2 comments

I just got done reading some of your updates and I wish I'd been on more often but hey we just replaced the laptop last week and it's been in high demand!!!

So Whitney is doing rather well I'd say.  She is back in school - Yay!  She's made it about 3 full days and 2 half days per week.  She is exhausted and hurting like heck when she comes home (has the pain, etc all day and worse at night)...She did dance once a week during the summer and she's wanting to do some more starting next week.  We'll see how it goes.  All in all her attitude and coping skills has improved like a hundred fold.  She's out of that helplessness phase, thank goodness.  That doesn't mean she doesn't still have real lows and even pain to the point of needing a wheelchair but man what a difference.  Sometimes she has such a "good" streak that we forget how sick she is and when she crashes that slams us back to reality.

So where are we on the medical front...her neuromuscular doc called out of the blue last week to check on her. He's been talking to his colleagues about her case and he is very pleased with her attitude (that pain isn't going to run her life anymore).  He's always believed her but seeing through the depression she was battling when he first met her confused matters (his words).  They believe (as we have) that this is probably all caused from the bout of mono this all started with.  It somehow got into her nervous system, etc and wreaked and is wreaking havoc.  He thinks this is an autoimmune autonomic neuronopathy (I think that is what he said but I could be wrong there might have been a para in there but I was holding the grandson and couldn't write anything down).  He'd like to do another skin biopsy and also start her on weekend courses of steroids.  He told me to discuss it with Whitney.  Whitney wants nothig to do with another skin biopsy but will try the steriods.  So we are waiting for him to call back on that.   I told him though that I wish I had something - anything that could take her pain down a notch when it gets really bad.  He said we could try something that she's used in the past but I couldn't think of anything that worked. As I type this I am remembering that Tizanidine (a muscle relaxer) helped in the hospital by letting her sleep when the pain was bad.  I may ask for some of that for the really bad nights.

She's also still having digestive issues. Not surprising for a dysautonomia kid right? The GI just wants her on fiber supplements.  Fiber choice but Whitney hates she is taking metamucial capsules. This lady doesn't get dys but Whitney is not up for more tests either....or new doctors.

She's still having "blank" moments that are getting worse - she gets blurry vision, dizzy, can't really hear whats going on around her, and her head hurts. These happen up to 5 times a day. She's getting mini-migraines (which is what she describes as getting an aura (for her a feeling of de-ja-vu) everyday, several times.  Monday she got the full blown migraine and had to come home in the afternoon and sleep.  

I still need to get her in to an ENT to check her tonsils and adenoids per the results of the sleep study...

SO for other news...
Baby Brayden was born on July 28th a whopping 10lbs 4.5oz, 21"long.  He is now about 12lbs if I had to guess.  He was 11.4 lbs two weeks ago.  Momma and baby are doing great!  Chrissy goes back to school next week.  

Hope everyone is doing ok.

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by CHRISTYDRAKE, Sep 01, 2011
That is so great that Whitney is able to not let it run her life!  I'm hoping the PT at Mayo will also help Cody with that.  Since stopping his DHE shots he has been in bed for 8 days now, no teacher,etc...October can't come fast enough.

Congratulations on the baby...What a big boy!  How does Whitney like being an aunt?  Excited is my guess.

So do they think that this will run it's course for Whitney or no answers?  Cody had his adenoids removed when he was in the 3rd grade, but he still has his tonsils.  He didn't have problems healing from that, it was the holes they drilled in his sinus cavity that gave him trouble.  

Cody also had a migraine today, and he doesn't get them very much any more.  These poor kids!


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by tdavidson, Sep 02, 2011
Whitney is learning to self-limit.  She does some of what she wants and then rests. (Most of the time) She's hanging out with friends who understand that she can't do all she used to and that are ok with just "hanging out" talking or doing crafts or playing board games.  She's not so good about coming inside when she is too hot (vased on swelling) because she is having fun but she gets the paybacks.

I asked him for a prognosis.  He really doesn't know.  He hopes that the heavy duty steriods will stop the process (if there is an autoimmune response still occurring) and she will get better...or it wont do anything and this may be what she is left with - the damage done - what she will have to live with or it could get better on its no real answer just guesses.  

I think this heat makes her symptoms worse...including migraines...hope Cody feels better this morning.  Poor guy.

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