Tuesday, November 9, 2010

An Update on Emily - Finally some news

Dear Friends,
Below is a post I wrote last night for my other blog Basketmaster's Weavings.  I write more personal stuff over there.  I've pretty much kept my personal life out of this blog but this is one time I'm asking for prayers for my daughter.  Thanks wariors!

If you've been reading this blog for some time, you know my sweet Emily, age 15 1/2 was struck with fibromyalgia beginning about a year and a half ago.  There are two schools of thought with fibro.  The first is that it is its own disease.  The second is that fibro is a symptom of something else going on in the body.  I choose to believe the second because I want to believe we can "fix" her.

We have been to so many doctors and specialists.  The pediatric rheumatology/fibromyalgia specialist that she sees has tried everything in his bag of tricks.  I've tried everything that has been sent or told to me.  Nothing has worked and all lab results, exams, and testing have come back normal.  Until now...

We had been referred to a medical office that does more alternative therapies of medicine.  We first went a couple of months ago.  Emily first saw a nurse practitioner who spent about an hour and a half going over EVERYTHING regarding Emily's fibro history.  She ordered some blood tests.  I thought to myself, Emily has been tested for everything under the sun already.  The nurse practitioner said I had to go to a specific lab because this is the only lab in the city/state to run some of these specific tests.  While I wait the 6 weeks for the tests, Emily has been back to this clinic for massage, healing touch, she's started yoga, and will soon begin acupuncture.

This morning was our follow-up visit after 6 weeks.  Would you believe there were some lab abnormalities?  I was shocked.  She, the nurse practitioner, spent an hour with us again today and there were three significant findings.  The first thing she said is that Emily has Hashimoto's disease.  This is a disease of the thyroid, the antibodies that the thyroid produces, that is not treatable, but is pain causing.  (Emily's thyroid is functioning properly, just not the antibodies it is producing)  I also question if the other two issues get resolved that possibly the Hashimotos will resolve itself???  Maybe??

Another abnormality that was VERY low was a specialized Vitamin D test.  Not your standard test and Emily has started today on some medication to bring that up.  Low test results here cause pain.

The third abnormality is something that could be carried by ticks.  Not Lyme disease, but related.  It has something to do with her lymph system and according to the nurse, there is only one doctor who treats for this specific issue in the United States and that doctor is in Kansas City.  Again, this was a specialized test and Emily's results were VERY low.  She thinks these three things are all interrelated and all causing her pain.  She also thinks it will take a year once treatment begins for Emily to start feeling better.  Back to the tick thing.  Emily had been bitten by a tick. (I don't remember the nurse asking us about ticks at the first visit and I didn't even think of it at the time.)  She was bitten back when we lived in Florida.  The nurse practitioner thinks that it is possible that Emily has carried something in her body that has remained dormant.  Then when she got very sick 1 1/2 year ago, high fever and so forth at the time all this fibromyalgia started, what was dormant in her body became active starting her pain.

So what happens next...Emily is now on super high doses of Vitamin D that we've started today.  The nurse practitioner asked her to start the Paleo diet, Emily calls it a cave man diet.  I got the book and we are starting it tomorrow.  Tonight I research this doctor in Kansas City and begin the process there.  Emily continues with yoga, massage, healing touch and accupuncture.  Whew....

I have been elated today to hear news that I'm hoping and praying will take us in the right direction with her.  I've been watching the television show "Mystery Diagnosis" faithfully to see if any of their cases are similar to Emily's.  There was a case of Hashimotos on the show.  I remember thinking, well Emily doesn't have anything wrong with her thyroid as it is functioning properly so I didn't pay much attention to that episode.  I'll have to go back and watch it now.  The final thing is that the nurse practitioner wants Emily to have some counseling.  Emily is such a sweet and loving girl, but as you can imagine, being in pain every day takes a toll on her both physically and mentally.  Sometimes it is hard mentally for her mommy here to know that my child is in pain, but we take it day by day.

So with all this said, please Please keep Emily in your prayers that we are doing the right things and finally getting her the help that she needs to remove this pain from her body.  Also please pray that she has the strength to deal with the pain until we get it resolved.

With love and blessings,
(Update)  Upon further research regarding Emily's lab tests, it appears that she has Chronic Lyme Disease.  So much was given to me earlier that it is all hard to digest.  The more I read, the more I find people first being diagnosed with fibromyalgia for years only to discover that they have had chronic lyme disease.  Could it be that this has been her problem all along?  Now, what about the Viatmin D and Hashimotos?


Katie @ On the Banks of Squaw Creek said...

Wow. Prayers for your Emily.

When I read fibromyalgia, the first thing I thought of was thyroid, because my low thyroid symptoms are a lot like fibromyalgia.

I truly hope that these are the answers you've been looking for! It is so frustrating to be helpless, especially when your baby is in pain!

Michelle Hoad said...

Prayers for her, but also for you. You need them just as much as she does. It's so hard to see our kids in pain. Good for you for continuing to search for answers. Hopefully now that you have a proper diagnosis, she can get some relief.

the country cook said...

Praying for her! I understand how frustrating it can be when doctors can't figure out what's wrong. And fibro is so confusing! I've even read research linking fibro with small intestinal bacterial overgrowth. I don't have fibro but I have been dealing with a chronic condition for over 3 years that doctors have yet to really help with. I'm hoping her luck is better than mine. :-)

ER and Fam said...

I also have Hashimotos, infact my entire family has it. Including all my brothers and sisters. We produce the antibodies, mine is functioning properly but I am still being treated with a low dose of synthroid because although my thyroid is functioning, it is fighting the antibodies and increasing in size. If I let this go it will produce a goiter. Also, it needs to be regulated closely when she eventually get's married and pregnant as it can cause multiple miscarriages (this is how I was diagnosed) Being treated for it has greatly increased my mood, energy, and reduced my pain levels. See a specialized endocrinologist for this. If you are in Utah and want a name mine is in Layton and is WONDERFUL. Good Luck!


Erin said...

I think in a way, the Lyme's Disease diagnosis is better than fibromyalgia. Hopefully, they'll get that treated and she'll feel better. As for your question re: Vitamin D. Do some research and you'll quickly see that getting her D levels up can really have a positive effect on her overall health and may help her body fight more effectively. As for the Hasimoto's, perhaps it will turn out to be a side effect of the other stuff that is going on and will be a non-issue. Keeping my finger's crossed for her (and you).

cindy said...

Prayers are sent for her and your family.


Suertemom said...

God will surely be with you at all times and will enlighten you. Miracles happen everyday. Just caim his promise.

I am a new follower.My prayers for your whole family.

Katie said...

It sounds like you may want to have her pituitary checked out by an endocrinologist. It can cause so many problems with thyroid and other hormone levels. Many unknown issues stem from the pitutary. Best wishes to your family during this trying time.


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