Jan. 24th, 2009

jesshartley: (Default)
The Valkyrie has bad allergies. They aren't constant, being mostly environmental, but they are frequent and when they get bad she develops a horrible cough - like so bad you can hear her "barking" outside of the school. It's painful, annoying (to her and those around her) and loud enough to disrupt class and get her sent home from school because neither she nor her class/teacher can concentrate.

This bout has been particularly bad. She doesn't respond to allergy meds, at all, and while they're going to start her on allergy immunotherapy shots, that's a long term solution, not a fix to what ails her right now.

We're desperate to do anything we can to help. So, this weekend we're taking the carpet out of her room and putting down laminate flooring. To do the job right (And because the paint/fixtures/shades in there are probably original to the house (circa 1960), we just finished pulling everything out of her room, and are going to paint it all, put up new shades, declutter/organize (a challenge with a 13 year old) as well as getting a hypoallergenic "bed sack" for her mattress, new pillows, etc.

My gods, this is a huge job.
jesshartley: (Default)
There's a saying about, if you hear hoofbeats, think horses, not zebras. Basically, don't expect the rare when the common is likely the culprit.

However, with the Valkyrie's cough, we've identified that yes, she has allergies but no, they're not responding to medication and we've had a stinking suspicion that they're not the sum and total of her cough. (Thanks to those of you who suggested things. We have tried, literally, every over the counter and prescription cough/allergy substance we or our doctor(s) could think of. Nothing even takes the edge off, including cough syrup with codeine, meds for post nasal drip, allergy stuff, etc.)

The doc here in Bisbee started leaning towards psychogenic cough as a diagnosis early on. We moved here in July of 2007, she had her first cough bout here in August of that year, and was out of school for two weeks. By January of 2008, we'd been in the doc office multiple times and they ran a full blood workup. Among the results was a low thyroid score (TSH), which can be an indicator of hyperthyroidism. The doc, at that time, said basically that he wasn't worried about it because she wasn't exhibiting typical hyperthyroidism symptoms (weight loss, etc). We agreed, as at that point we hadn't been to a pulmonologist, allergist, etc. Follow up on the obvious stuff first - not the zebras.

A year later, we've chased all the horses, however. We've been to the pulmonologist, put her through the whole skin test for allergies, had her on a trifecta of the most effective allergy meds for months (Singulair, Zyrtek and Nasonex) with absolutely no reduction in symptoms. In fact, she's been coughing off and on pretty much since Thanksgiving. They've tried steriod bursts, which have helped in the past, but to no avail. We've had chest X-rays, a sinus CT scan and, as of last week, the pediatrician straight out said that he's done everything he can for her, there's no other avenues to follow up on, it must be psychogenic*.

Now, one of my best friends, Jen, is a doctor. I love her and trust her with my life. She's been a sounding board with us throughout this, and when I went to her in desperation, she suggested I get a copy of the doctor's files from both here and back in Easthampton, and start going over it. She suggested, without even knowing about the blood work we'd had done back in 2008, that she'd suggest a full thyroid screen if it was her, especially as the Valkyrie has consistantly complained about a horrible itching in the front center of her throat, right above the sternum (the location of the thyroid.)

I called the pediatrician, and asked to be allowed to speak with him (he was in the office that day) to ask him about ordering a thyroid panel for the Valkyrie. The front desk refused, insisting that I had to a) make a consultation appoint ment with him in order to request such a thing and b) have the Valkyrie present (which means pulling her out of school yet again.) I did my best to bully my way through, but they accused me of "contradicting" my doctor's orders by talking to another doctor and insisted I couldn't speak to him unless I came into the office, with the Valkyrie.

I am, however, not so easily daunted. The Valkyrie has also been seeing a /phenominal/ allergist up in Tucson, and she's been great about using phone communication with us for things when possible, since it's a 4 hour round trip to visit her office. I called her, explained the situation, and she ordered the panel immediately.

Round about this time, I'd begun to do research on other pediatricians. I'm a slow learner, but at the point where the doctor says he can't do anything else for your child, it's time to find a new doctor. However, since new patient intake appointments are longer than normal office visits, we had to make our appointment to the new pediatrician in the second week in February.

Wednesday, the Valkyrie began complaining that her "lungs" hurt. Since she's had her cough turn into pneumonia before, we immediately made an appointment with the current pediatrician, thinking that any treatment is better than nothing. He ordered a chest x-ray, which came out clear, and I took her to the lab to have them run the thyroid panel at the same time.  I asked the tech to fax the results both to the allergist and to Dr. Lindstrom, so that both of them would have them.

The doc had us carry the x-ray films back to the office with us, and after looking at them, came in to proclaim them clear and reiterate that there was nothing else he could do for her. I mentioned the thyroid panel, and he poo-pooed the idea, saying essentially that while it certianly wouldn't hurt to have one run, he didn't expect to find anything out of the norm at all, and reiterating his hypothesis of psychogenic cough. I mentioned that "I realize we're following up on zebras here, but..." He cut me off with a scoff saying that not only was the thyroid panel looking for zebras, it was looking for "green zebras".

Friday afternoon, I got a voicemail message from his office, saying he wanted to talk about the test results. The office was closed by the time I got the message, so I began calling first thing this morning to follow up. His nurse finally returned my (multiple) calls around 3pm today. "Doctor Lindstrom wants you to come in so that he can talk to you about the test results."

Cue my heart hitting the floor.

Despite my urging, she was unwilling or unable to tell me anything specific about the results, although I did get out of her that yes, if they were normal they would have just told us that, but no, if the results were considered "urgent" they would have insisted on us coming in yesterday rather than Tuesday afternoon when the doctor can next fit us in.

Cue combination of frustration, anger and righteous indignation.

So, the situation stands at this. There's something wrong with the thyroid results. It's not (probably) urgent, but it's also not normal. It may (according to Jen) directly be causing the horrible itching the Valkyrie's been experiencing that we've all been pegging for something allergy/bronchial/nasal-drip focussed. I'm going to call the allergist (who is awesome) on Monday morning and try to sweet talk/straight talk the results out of her. By collaborating with Jen, I think I can at least get a bit of an idea what to expect when going into Lindstrom's office if the allergist will fax us a copy of the results (what is with the whole idea of a patient not being able to get immediate access to her own medical reports, anyway? What right does the doctor have to hold the results hostage?) I'm still meeting with Lindstrom on Tuesday, either way, because I want to see his face when he has to admit that there was something to the green friggin' zebras. Considering that he's basically been treating me like a drug seeker or hypochondriac on the Valkyrie's behalf, I really want to see him eat proverbial crow.  Then I'm taking a copy of the results over to the new doctor on the 9th, and we'll follow up treatment from there. I'm done with this dipstick and his holier-than-thou, irrefutable, condescending attitudes. My daughter deserves better, and I'm sure as hell going to make sure she gets it.

Any of you who know me know that this is pushing one of my hugest buttons. I HATE being told "I need to talk to you... but I can't do it now, can we meet in a few days?"  My mind fills in HORRIBLE reasons, regardless of the circumstance, and "it's okay, it's nothing bad" doesn't do a thing to lessen my stress until the conversation can finally happen. The fact that we are /all/ dealing with all this on little restful sleep and stressful school/work schedules has done nothing to help our coping mechanisms.

Right now, I'm torn between "I told you so!" and holding back tears of stress/worry about what is going on with my babygirl. I'm behind on work, I've got to paint her entire room tomorrow and re-construct it so that it's ready for her to go back to school on Monday, and I really really am running low on spoons (something that's a horrible rarity for me).

So, if I've been slow to respond, short of temper or empathy, behind on projects or just plain not myself, I apologize. Maybe this will explain a bit more of what's going on with us out here in the desert.



(*Psychogenic symptoms are, inherently, a diagnosis of exclusion. If every other avenue of possible physical cause has been ruled out, the assumption is that it is being caused by the mind, somehow triggering a physical reaction. The most common psychogenic (from what I understand) is nervous stomach/irritable bowel syndrome, but psychogenic coughs are fairly common as well. However, because they are a diagnosis of exclusion, they should not be labeled as such until all other physical possibilities have been ruled out.)

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