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Jul 27, 2011 - 3 comments

I haven't updated this journal in a while because our computer died...I have my work computer at home now and I am sneeking some time for some personal catch up at 6am!  

Whitney has had a pretty good summer overall.  She's been going to her babysitters house everyday she can so she can play with her friend (babysitters daughter that is just a little younger than Whitney) and they have a pool so she swims - great PT.  She's been taking a hip hop & lyrical dance class once a week too.  She still has all the pain and some days are worse than others but she's coping really well and generally not letting it stop her.  

These past two weeks of intense heat have made life more difficult for her though. Her evening and early morning pain have brought her to tears a few times.  I hate that we have NOTHING to give her during these times to relieve the pain.  She says she is having an average of 5 blank moments a day as well.  

We got the results of the genetic testing - the chromosomal array - and it was normal.  BUT really not an indicator of anything. I am not sure why that one was even done. I thought they were doing the specific mutation testing but they opted for the cheaper generic array that really only shows major mutations at the chromosome level not particularly at the gene level or smaller.  So now we wait for more authorization for the specific testing.

We also got the results of the sleep study.  She has signs of obstructive apnea - meaning she woke up slightly 8 x an hour because of breathing obstruction. So for this we get to make an appointment with and ENT to check her tonsils and adenoids.  Her brain also woke up 20x an hour. No reason given...She had periodic limb movement - we've seen her jerking like this for a while. They said it could be due to iron deficiecny which coincidently we had checked the week or two before I got the results and she was anemic (like Chrissy & I are too).  So she is on iron.  (have you ever taken iron - the results are gross)...and now we get to make another appointment with the epileptologist.

Whitney is excited about returning to school this fall. She is going back to St. Pats instead of the public school. I already worked out a part time schedule to start, just to get her integrated back into the swing of things and to see if her little body can handle it.  No PE though. That would just cause the day to go down hill. We've discovered that even though she wants to run and can physically do it - it causes immense pain, burning, and swelling.  She puts up with it in dance but during the school day it would just ruin her concentration. Because after dance she will come home and show me her new "moves" but then she crashes for the evening and only wants to do light activities like reading or tv...no more exercise.

Hope everyone is doing well and enjoying the summer!

Oh Chrissy has not had her baby. She is 9 days overdue and they are inducing her tomorrow morning unless she decides to have him today!  

Theresa





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Avatar universal
by CHRISTYDRAKE, Jul 27, 2011
Theresa,

I'm glad Whitney is coping with the pain: Sad that she has the pain in the first place though.  Do you think Ranken Jordan gave her the skills to cope better?  I'm happy for her to be returning to school as well-Good for her!  

So other than more genetic testing, are they trying to figure this all out?

We will be heading to the Mayo Clinic for Cody.  Dr Kinsella wants him to do the 3 week PT there for POTS kids, but first to get in we have to see a POTS doctor there (which is fine with me).  I emailed a doctor directly(bypass the scheduling person) and the doctor told them to squeeze us in, instead of the normal 15 month wait to see him.  I am waiting for them to call me back with the details.

Summer is usually much better for Cody, but not the case this summer.  Besides his nausea, he is exhausted!  Also still working on 2 classes for his sophomore year, he finished 2 plus a MoVIp class.

This heat is horrible!  I thought of you when we drove through Rolla 2 weeks ago on our way to Branson.  We made it just a day trip-went to the Titanic museum, Hollywood Wax Museum and Ripleys Believe It or Not and then went back home.  

Hope Chrissy has a healthy baby, let us know when she has it.

Christy


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by tdavidson, Jul 28, 2011
Hi Christy,
Sorry to hear it has been a rough summer for Cody. This heat is terrible and I think it contributes to the kids dysautonomia symptoms and it definitely brings Whitney's discomfort/pain levels up.

Ranken Jordan did provide her with coping skills. We didn't see that immediately but within a week or two of leaving there she realized if she could do all that work (OT/PT) there then surely she could have some fun and do what she wanted to within limits (she's still having a hard time defining those limits but she is learning).  They also taught her that she can walk on her heels and touch those over sensitive areas and it would be ok. That has been super helpful and has really cut down on the falling.  Her feet still give out or she might fall from dizziness but it is much better than before.

I hope Mayo works for him.  I've heard good and bad about that program, but the bad was that it wasn't a program for kids as young as Whitney (even though they took kids that young) and geared more for teens.  So Cody should do fine.  I am glad you'll get in soon though. Maybe they can get him on track to head back to school too.  I am grateful for the QOL Whitney has regained.  

We are on doctor hiatus.  I want them to keep trying to figure it out but Whitney really wants a break.  She told me the other day that she knows God will heal her when its time so why bother with the doctors?  I told her sometimes he uses the doctors to help the healing process or that God may be using her to teach the doctors something.  But for now, we'll be satisfied with the slow pace of diagnosis unless she really goes into another crisis and necessitates the need for quicker action.  I want to give her a break from poking andf prodding - it's gotten no where anyway thus far...not giving up though...just taking a much needed break from stressing about it.

Theresa

Avatar universal
by enzymelover, Jul 29, 2011
Hi Theresa!  So, is there a new baby in the family now?  I haven't posted anything in awhile, our keyboard decided to let the "e" and "o" keys quit, so I've been reading but not answering. I have replaced the keyboard with another one, which had stopped working after the cat knocked over a glass of water on it. It seems to be working again just fine, so we'll see how long this one lasts.
Anyway, congratulations on the new baby!  I hope Chrissy is feeling well and happy!

I just posted to Christy that I have been reading about acupuncture, and how it has helped many local people here with neuropathic pain. I think it would be important, if trying acupuncture, to find an extremely experienced practitioner, but it really does seem like something to look into for relief of nerve pain. If you haven't already dismissed it as a treatment for Whitney, you might see if there's a good acupuncturist near you, who you could discuss her symptoms with. At least it would be a more relaxing sort of "poking and prodding", so maybe Whitney wouldn't object.
I haven't decided if it is something Casey should try. His major problem is still orthostatic hypotension, not pain.
Oops, gotta stop. I'll come back later.

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