damn, damn, damn, damn, damn. kiddo dx'd with fibro

[mopinko]

this has been one of those slow motion train wreck things. she will be 17 in a couple weeks, dx'd with chron's at age 9, dx'd over a year ago with sleep problems, dx'd by the latest doc with a serious case of raynaud's phenomena, and has had pain problems forever.

she is also so amazingly smart, getting mostly a's, including her 3 ap classes she is taking. we are thinking of getting her her own mailbox for all the college come on letters that she gets. beautiful. sweet. has the emotional intelligence of the dali lama, and always has. so full of promise. such a bright future. her nickname, which she hates, is 'perfect'.

but now this. so far i don't think she is really connecting the dots beyond the fact that she understands that this has been a very hard process for me to be dragged through. i listened, i took her from one doc to the next, but all along i tried to tell her that i didn't really think there was anything good at the end of the tunnel. we both knew that we had the same thing. different underlying triggers, but the same thing. she is comforted that i understand, and believe her. she has not yet looked at my life and seen how awful i think it is, because that is not something that i talk to her about. she sees me slow down and stop what i am doing after a few hours, but doesn't put that particular 2+2 together. she sees me sitting at my desk, lurking around du, and doesn't put it together that i do this because i can't do much else.
well, she was referred to the rehab institute of chicago which is an amazing organization. they have an adolescent pain clinic, which i hope will help. they have a combined program of physical therapy and counseling. i hope it can at least keep her moving forward, and get her through college. she has already pretty much decided to go somewhere in chicago where she has a support network that she knows she will need. so already it is foreclosing her options. fortunately there are many, many fine colleges in chicago, and the other kids all are or plan to go to school here somewhere.
but shit. damn. fuck. no fucking fair.

[nadinbrzezinski]

1. Hug her and try to help her as much as yiou can

yes, life is not fair, and usually those with the greatest gifts face challenges...

:hug:

[revolution breeze]

2. It is difficult being an adult with chronic health conditions

But having to manage a child hurts much much more. I have autoimmune disfunction, leading to RA, Sjogren's, blah blah, blah, but have two children with Juvenile diabetes. I admire their bravery every day and would take double my pain if it would make them better. (((HUGS)))

[mopinko]

3. got her act scores

31. which is great. but the sections where she did less great were definitely tied to her physical stamina more than her abilities.
did i already say that at least her mom believes her? big difference

[tango-tee]

4. All my best to Kiddo.

Shit... There are times when words don't suffice.

All I can say is that my best wishes go out to your family... so much promise. Hang in there.

Much love coming your way from across the Atlantic!

[mopinko]

5. update

kiddo starts the program next week. i am keeping my fingers crossed that these people can actually help her. they did put her on lyrica, but she isn't really ramped up to an effective dose yet.
the first 2 visits- 4 hours each, are pt and ot eval, and i think shrink. she does need some shoe orthotics, which they will do for her. (she has some strange, subtle abnormalities that make me really curious.)

after that it is 2 days a week, 4 hours, for 6-8 weeks. group counseling, individual counseling, exercise, and ot. we did the 4 hour intake, and i have to say i was underwhelmed. for one thing, they still use paper records, and the doc wasn't really typing too much during the interview. shrug. spoiled about that i guess.
didn't like him much. mentioned sending her for acupuncture, although i think he sensed the open hostility in my reaction on that one, so maybe he will drop it. if this is one of the countries best pain clinics and they are sending people for this kind of "alternative"- read unproven, imho- treatments, it leaves me wondering if they know they don't really have much to offer.
they sent out an info packet that had advice for parents that was pretty much the good old authoritarian cure. blech.

but, trying to keep an open mind, and hope they help her. mostly venting here so i can keep that quiet around her. i tell you what, tho, if this is all just a waste of time, and this stuff so often is, i am going to be furious. to take a kid this age and offer them a bunch of false hope seems like a crime. it will blow my head right up.

anyway, expect more venting in the future.

[soleiri]

6. Best of luck to you and your daughter

You are right, it's no fucking fair.

My son is 16 and he's been in pain for the last few months. Finally he was referred to a rheumatologist.
Our appointment was today and she did a very through exam, asked questions, and LISTENED!!!
She was wonderful.
She did bring up Lupus, Rheumatoid arthritis and Ankylosing Spondylitis, at which point I was holding back tears.
They're doing a crapload of tests and we should get something back in two weeks.
I'm trying not to worry, but two of his cousins on his dad's side have RA.

[mopinko]

7. best of luck to both of you.

hopefully, the worst is over for him, now.

[cpompilo]

8. Here is a clinical study from Stanford

This is from the Low Dose Naltrexone website www.LowDoseNaltrexone.org

> LDN for Fibromyalgia—Stanford University, Palo Alto, California

A single-blind, small clinical trial of LDN for the treatment of fibromyalgia was begun at Stanford Medical Center in June 2007; principal Investigator Sean Mackey and sub-investigator Jarred Younger. The results were published as “Fibromyalgia Symptoms are Reduced by Low-Dose Naltrexone: a Pilot Study” in Pain Med. 2009 May-Jun;10(4):663-72. Younger reports:

The LDN trial on 10 individuals gave us encouraging results. The findings warranted a larger, double-blind trial individuals with fibromyalgia, which is ongoing now in the San Francisco Bay area. We are also pursuing a small trial of LDN for pediatric fibromyalgia patients.

http://clinicaltrials.gov/ct2/show/NCT00568555?term=ldn+and+fibromyalgia&rank=2

I use LDN for Crohn's Disease. Perhaps it can help your kiddo.