Wednesday, April 19, 2006

AND the winner is...

First things first: Our friend Donna, who is the lovely and talented wife of our friend Garrett nailed it. 500 points for Donna, and Garrett gets 100 bonus points just for being smart enough to be married to Donna. And, for being nice enough to pass on her wisdom to us. Thanks again to both of you.

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Yes, indeed, we do have a diagnosis. From a lovely, compassionate, caring doctor - no Quacking here - and more importantly, we have a Treatment Plan.

And because we have a Treatment Plan, we can now begin to have a Life Plan again.

It has been an amazing two weeks.

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We needed a new rheumatologist. We found one, but The New Rheumatologist wasn't easy to get in to see. It took a bit over two weeks to get in, and that was after he personally reviewed her case, and spoke to at least two doctors who have been treating her. We had faxed over a rather lengthy, but detailed, medical history for her along with the names and phone numbers of our Pediatrician and the Big Cheese Doctor at The Shriners Hospital down in Hospital City. His office called the next morning to say that he wanted her to come on the next available appointment.

Between The Quack and the New Rheumatologist, we went to see our Pediatrician. First, to ask her what she thought about the New Rheumatologist, and to get some preliminary bloodwork done, so that the New Rheumatologist wouldn't have to wait on the results. Ever since The Quack, we were feeling a bit, um... unsure about any unknown specialist, so it seemed like a good idea.

Our Pediatrician is an adorable, sweet woman who is typically rather calm. On this day, however, she is distressed by our report on the visit to The Quack. The more we talk, the more The Wrench and I realize that The Quack is indeed just that - and that we really do need to go to the New Rheumatologist, and we need to go ahead and see the New Neurologist as well. (but the New Neurologist is a blog entry all his own...) The Pediatrician tells us that she takes one of her own family members to see the New Rheumatologist, and that she really admires the New Neurologist. She has the lab draw the blood from Twinks for the special tests that the New Rheumatologist will want to see. And then she says...

... "I know what The Quack said about Twinks simply being depressed is really upsetting you. But I think that I would like to start her on an anti-depressant, in the event that this really is fibromyalgia. That way, if it is, we can begin the other medication right away to treat her pain."

Huh?

Up to this point, I hadn't read much about the treatment of/for fibromyalgia. I was quite familiar with the symptom set, simply because it matched Twinks symptoms so very well. But as far as treatments went, I really hadn't learned much about it yet. That was about to change.

She explained that the ideal treatment for Twinks would be a combination of two low-dose antidepressants; that one alone might work a little, or not at all, but that the two together had a really good success rate. We heard all about how tricyclic antidepressants can be combined with a selective serotonin reuptake inhibitor as an effective and desireable treatment. She also explained that she would feel much more comfortable starting Twinks on one of the drugs now, "Medication A" and then if our suspicions were correct, and it was fibromyalgia, then we could begin the second drug "Medication B" immediately. By starting them one at a time, if there were any odd side effects we wouldn't have to worry about which drug was causing them.

So, we did. The Wrench and I weren't happy about it - we didn't want to think about putting our twelve year old daughter on anti-depressants for crying out loud, but we did it, hoping against hope that it would help. We took the little sample package of the little pills, and promised to call The Pediatrician in three days to report how Twinks was doing.

Remember, at this point, we still had a week to go before we saw New Rheumatologist.

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The week passed. Twinks dutifully took her low-dosage little pill every day at lunchtime. She still hurt. She still cried at night, curled up in a little ball. We couldn't tell any difference at all, and neither could she. Medication A seemed to be useless.

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When we arrived at the New Rheumatologists offices, I noticed right away that not only were the magazines current, but there were other obvious signs of technology - like a new flat-panel LCD television in the waiting room, and actual computers being used by a cadre of lovely Cheerful Girls who were all garbed in the same Cheerful Scrub Suits. This, coupled with the fact that there were also other patients present in the waiting room, certainly helped me feel much more comfortable.

We found a spot near the corner between two large potted plants (or small potted trees, I'm not sure which) and settled in to the comfortable, tastefully appointed overstuffed chairs. The Wrench had insisted on coming to this appointment, (in the event of further Quackage) and he held The Twinkie's hand, speaking softly to her as I filled out yet more forms. The Twinkie was wan and pale this morning, and her tears were close to the surface; you could see the pain shrouding her little form. I clipped the medical history that we bring with us to all of the appointments to the forms, and handed them back through the window to one of the Cheerful Girls.

We didn't have to wait long until the door swung open, and the shortest little Cheerful Girl you would ever see bellowed "TWINKS!" into the room. We jumped up, and wended our way across the room to find Wee Cheerful Girl holding the door open, with a clipboard clutched to her chest, and a bright smile on her face.

Wee Cheerful Girl shepherded us into a Cheerful Room, where we took our places. She bounced into the room, and briskly began to go through a checklist of symptoms. She flipped through the medical history that we provided, underlining and then highlighting passages that she apparently wanted New Rheumatologist to focus on. She chattered with Twinks, finally making her laugh just a little when she pointed out that Twinks was already taller than she was, and then she bounced from the room.

We only waited long enough for The Wrench to ask how *this* setup compared to The Quacks offices - and in came New Rheumatologist. NR is not only significantly younger than The Quack, but before he even opens the chart he exams Twinks, carefully checking each of the 18 "pressure points" that are one of the hallmarks of FM. He talks to her - not at her - and he listens carefully to what The Wrench and I have to say also. The exam alone takes more than 20 minutes; by the time he is done talking with us, nearly 45 minutes has passed. He flips open the chart, and begins to make notes. The room has fallen quiet, and all you can hear is the hum of a distant air conditioner and the scratching of his pen on the paper.

Finally, he closes her chart (how did it get so thick, so fast?) and he smiles weakly at us. "You know, of course, that fibromyalgia is a set of symptoms - not a disease." He continued then, "And, as such, there is no cure for it. We can treat the symptoms effectively most of the time." He paused. "And, it is fairly rare to see it in a child. We hate to see it in a child..." He sighed "because it's a long road then". He patted Twinks knee, and then he handed me the chart and the paperwork. "I know that the pediatrician has started her on Medication A already. She can start Medication B whenever you think she's ready". He opened the door to the room, and motioned to Twinks "The goodie basket is over there - go help yourself!" and she was off of the table, and out into the hallway, digging through the little toys and stickers. The Wrench appears incredulous; he looks at me, and I can feel the emotion coming off of him in waves. I felt odd, and disconnected, almost like I was watching from a distance. I collected the return appointment card, the receipt for the co-pay, and said good-bye to the all of the Cheerful Girls.

Suddenly, somehow, we were in the parking garage. I don't remember the elevator ride down to the lobby, or crossing the bridge into the garage; I was still walking numbly behind Twinks and The Wrench. But then there we were standing next to the minivan, and The Wrench slid open the door, and helped Twinks get in. He closed it, and leaned against it for a moment, passing his hand over his eyes. He raised his head, and looked at me, and said "That's it? We came away AGAIN from another doctor with no diagnosis? What the &%#$ is going on here?"

And then I landed with a thump; because I realized what The Wrench didn't understand.

The New Rheumatologist hadn't come out and said the words "Your daughter has fibromyalgia" because he assumed that we had already heard them. He was confirming what he thought we already knew.

I looked at the receipt that was still in my hand. There was a little box in the lower left corner of the paper, and in that box were written numbers and one single word. The numbers didn't mean much at that moment; it was the word that held meaning. I pointed to it then, showing The Wrench.

Fibromyalgia

It was just like that. Right there, in a parking garage, you realize that your life changes forever.

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At home, we called the Pediatrician, left a message, and then I realized that I needed to call the New Rheumatologist office, to get a copy of his report as soon as possible.

Wee Cheerful Girl answered, and after copying down my fax number, promised that she would fax over a copy of the report as soon as it came back from transcription. She burbled happily that they were running "on average" only 48 hours right now. 48 hours seemed like a lifetime to wait just then... so I asked Wee Cheerful Girl if she could double check the diagnosis codes in the corner of the receipt for me - I wanted to make sure that I was reading them correctly, since my copy was so faint. "Sure!" she chirped, and after some rather serious rustling of papers, she came back on the line. "Yep! It's fibromyalgia all right!" she crowed. "Do you want those codes, or...?" No need, I told her.

The Pediatrician called back late that afternoon. We chatted about how lovely the New Rheumatologist is, and how nice all of the Cheerful Girls are, and what a great view they have from up there in their offices. And then The Pediatrician said that she had already talked with New Rheumatologist, and they agreed on Medication B, and would I like for her to go ahead and call that in to our pharmacy, so we could start on it tonight?

Silly woman. Wild horses couldn't have kept me from that pharmacy door; if there was even a chance that it would give Twinks some relief I would have crawled over broken glass. Broken glass that was on fire, and full of snakes. With big hairy spiders. Just let me get the car keys, and we will be there, waiting for Medication B.

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Nine days ago, we added Medication B with Medication A, and what we got was...

... our daughter back.

Twinks is now nearly pain-free.
Twinks sleeps through the night.

Twinks is going to try to go back to school tomorrow.

And we just got a little bit closer to Normal.

9 comments:

Kelly said...

WOW....I've been waiting anxiously for this post....or any post. I just feel so much for you guys. The run-around is so hard, I know.

And I cannot tell you how much better I feel that Twinks is feeling better! Y'all must be on cloud nine!

But please tell me: is taking anti-depressants to help the pain, or because they think she's depressed? I'm thinking it's like people who take seizure meds for pain (because they do both)--so her meds are for pain only, right? I definately didn't get the idea that she's depressed, at least, no more than anyone would be in that much pain.

kamagurka said...

Yaaay. Also, yay.

Rurality said...

Ditto, yaaaaaay! :)

Those low-dose anti-depressants are used for all sorts of things, apparently. I was on one for a while for headaches. I had to stop because they made me sleep so soundly. I had 3 alarm clocks at increasing distances from my bed. The last one was all the way across the room. The morning that I woke up and it was under the covers with me - and I didn't remember fetching it - was the morning I decided to stop taking them! Also they made me really curl my hands into odd positions when I slept, which ended up giving me carpal tunnel for a while, so watch for that! (I wore wrist braces to stop that.)

Suldog said...

Lord, that's a good post to read. My prayers continue.

MY WIFE takes a combination of low-dose anti-depressants that seem to help in keeping her horrendous migraines at bay. The incidence of those occuring is far far less than before the treatment regimen began.

Garrett said...

*sobs*

Oh, thank God.

*hugs Twink and Thimbelle*

Thimbelle said...

kelly: Suldog and Rurality are right - for whatever reason, low-dose antidepressants work really well on specific types of pain.

I don't pretend to understand all of the mechanics of it yet, but it is interesting to me.

We (The Wrench and I, as well as The Pediatrician) certainly don't think that The Twinkie is/was depressed at all. If there was any depression, it was because she was in pain, and it is certainly long gone by today.

The problem is that the latest study that shows that "people who are depressed can be in actual physical pain" is screwing things up for patients in situations like ours. I can't tell you how many doctors simply dismissed Twinks as being depressed because she had to wear braces. Her dad and I knew it had to be something else - and so we just kept on going. And going, and going to specialists till we found the right one.

Thanks to everyone for the comments! :) I really do appreciate them! :)

Anonymous said...

OMG OMG OMG OMG! This is so terrific! I am so happy for you, the Wrench and esp. Twinks!

As a parent and a grandparent, I've empathised with your heartache, watching your child be in pain and feeling helpless. And now I get to rejoice with you!

Yay Team Twinks! Go Team Go! Yay Team Twinks!

Ignatz

alpharat said...

Wow!

I am so happy for you guys! To finally have a name for what you're dealing with, a name for the enemy, it changes everything. It gives you a direction.

I been through something similar. It's better to be able to go after something than to not know what you're dealing with.

Tegan said...

Fibro treatments have advanced since I last saw a doctor. I need to go back. I wish I had insurance.

As I was reading your report, all I could think was "Thank God you found a real doctor!" and "Good lord, she's too young for fibro."

Good luck, Twinks! You aren't alone.