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[Guest guest]

I'm new on the list and am here because my 15 yr old daughter was diagnosed with

Lyme Disease.

She became symptomatic 2 1/2 years ago, however each symptom (showed

independately at first) was easily explained by other activities or events. For

example, first was lower back pain. She was 13 years old at the time, on the

school wrestling team, on the debate team, active, and a growing teenager.

Seemed most likely that it was a pull or injury from sports, or carrying heavy

debate material, etc. We tried all the obvious things (ibuprofin, heat, ice,

massage therapy, magnetic therapy, and more), she stopped complaining about it

after a bit, so we went on with life. Then came hip and knee pain, again,

explained by activity levels and growth. There were days that she just couldn't

get herself out of bed in the morning, we figured it was depression due to her

mood disorder (which does run in the family, so not sure if this will go away

when the Lyme is in remission, or whether it's truly the genetic aspect). She

went for physical therapy when her back and hips started hurting more, it didn't

help and made some things worse. Fatigue become more constant.

In August of 2009, we were on vacation with a youth group in Washington DC, and

she was wheelchair bound for a couple of days while we were there. Her fingers

were sore and swollen, she couldn't write, her feet were in excruitiating pain

(even going over side walk cracks in the wheelchair hurt), she slept numerous

hours even while sitting in the wheelchair. Suddenly it dawned on me (now that

the symptoms were clustering), that these symptoms were the same as Juv RA.

When we returned home we began the adventure of diagnosis. Somewhere along the

line, she also lost some hearing.

We started at Children's Hospital Detroit, rheumatology dept. After reviewing

lab work, xray, bone scan, and clinical exam, RA was ruled out. Fibromyalgia

was considered a possibility. We were sent to a physiatrist, in the hopes that

they would be able to dx the fibro and start therapy and such for chronic pain

management. They said they couldn't help her, and implied that nothing was

wrong. Back to rheumatology we were sent since that was where we started.

In October (while waiting for our next Rheum appt) lost peripheral vision

in her left eye. We ended up at the ER, and going through the eye exams.

Negative results, so were told to schedule an MRI.

At this point, and I had already started to research Lyme, thanks to

another parent from an email list I'm on suggesting that it would be worth a

look (her daughter was finally diagnosed with Lyme after years of searching for

answers). My daughter and I were pretty sure that she had Lyme, most especially

once the vision started to go.

She declined to schedule the MRI, wanting to wait first for lab work to test for

Lyme. At our next Rheum appt, we pushed for a Lyme test. The Rheum wasn't

pleased, but finally consented. Also sent us to a pain management clinic.

The test came back negative as far as they were concerned (levels were .24, and

I don't remember what test it was, it's in my papers here somewhere). Our

research indicated that any reading was positive.

We found a LLMD through the suggestion of the parent who originally suggested we

look at Lyme, and had her first appointment at the end of November 2009.

It's been a bumpy road, apparently her metabolism doesn't work " normally " and

she processes meds so quickly, that some have minimal to no impact. For

example, 500mg of Vicodin, was effectly for only about 3 days, and only for

short time periods. She is now on 750mg of Vicodin, and only weighs about 110

lbs. It takes the edge off for about an hour or so, but that's it. Also, none

of the sleep aids have worked for her, so she has difficulty getting a solid

night of sleep as everytime she moves or rolls over she wakes due to the pain.

The first antibotic, Doxy, made her extremely sick to her stomach, so we had to

switch at her appointment at the end of December. She's doing better now, and

has had a fair amount of days that she has made it to school for the entire day.

She has about 60 days that she has missed either the full day, or partial day of

school, since September.

This is probably too much info, however wasn't really sure what to say.

Oh, has anyone had issues with school and child protective services? Someone at

her high school called CPS stating that was high on Vicodin all day, and

that I came to the school every 4 hours to give it to her.

First, she is only taking it 3 times a day most days (not the up to 6x that she

is able to), which is before school, after school and at bedtime. I'm not

driving to the school to give it to her, I'd prefer that she not take it at

school.

Second, while it makes her a bit " happy " for a short time, it is more of an

exacberation of her manic cycles that a " high " .

Third, she has a 3.88 gpa for the 1st semester in spite of her numerous absences

and still tries to participate in extracurricular activities (though often can't

due to fatigue or pain). If she was constantly " high " on Vicodin, she wouldn't

be able to maintain that high of a gpa, or maintain an interest in outside

activities. (I'm not the only one that has stated this, a family friend who is

a DARE trainer/officer has even stated it).

So now I have to deal with " proving " to child protective services that she is

not abusing the meds, that the report was incorrect and that I can responsibly

care for my children. I know I'm in the " right " and have many, many people that

can testify to the fact that I'm a competent parent, etc.

The LLMD is shocked at the allegations and has stated that he is 100% behind me

on this. The psychiatrist that the kids see has also said that there is not

much to worry about. (CPS is contacting both doctors.)

Any comments or experience with this type of situation?

Charlotte (in Michigan)

mom to:

, 15 yrs, Lyme disease (also Asperger's Autism and mood disorder)

, 14 yrs, ADHD, Asperger's Autism, mood disorder

, 12 yrs, ADHD, PDD/NOS

(Please note new email address, effective immediately)

iamwhimsy@...

http://whimsy.t35.com