About Me

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Thank you for stopping in. I am using this space to write about my journey through space and time and share anything I believe may be of value to others in these uncertain times. It is my hope you find something here that will help you on your own journey.

Wednesday, March 29, 2006

Stevens Johnson Syndrome

Over three years ago, Quinn got braces and an expander put in. It was not the first time she had had some foreign metal installed in her mouth. When she was 7, the dentist had tried to control her thumb sucking with an appliance, but she contracted several persistant and penicillin resistant strep infections, and he took the appliance out as a precaution, because he could not rule out the possibility that the appliance was part of the problem.

A few weeks after the braces were installed, we again had to have a throat culture taken and Amoxil prescribed. A few days later she presented with what looked like pinkeye, so drops were prescribed. A day or two later her eyes and lips swelled up so the clinic sent us to the Children's hospital. The infectious disease clinic thought it was a virus but the eye clinic suspected SJ syndrome. The infectious disease clinic thought not because she did not have all the classic symptoms elsewhere on her body. Since only the mucous membranes in her eyes, nose and throat were affected they were reluctant to call it Stevens Johnson. They did not admit her, but asked us to return every day for a week so they could give her IV fluids, tylenol 3 for the high fever, and just keep consulting. They also gave her a 5 day course of Azithromycin.

She was no better after a week and they were no closer to a diagnosis. I got used to wheeling Quinn around the hospital between the two dueling clinics. It was wierd to see all the parents of other sick children looking so pathetically at the two of us. Were ther concerned for me or for Quinn or for themselves, wondering if she had some contagious disease? There was nothing wrong with her legs but she could not see properly because of the loss of the epitheum layer over her corneas and a membrane kept growing inside her upper eyelids. It had to be removed every few days. When she opened her mouth it was like that of a pus-filled monster in a horror flick.

I kept asking if she should have all the dental hardware removed. They finally shrugged and admitted it was worth a try. The orthodontist met us at his clinic on a Sunday morning and 20 minutes after they were out of her mouth, she opened her eyes for the first time in over a week!
The improvement was immediate and these pictures were taken by the eye specialist in the next few days.

The infectious disease clinic referred us to a dermatologist. He prescribed a concoction of Kao-Pectate mixed with xylecaine that Quinn gargled with before eating, to numb the pain of the food making contact with all that raw skin. He also ordered tests.

Quinn lost a whole month at school. Several months later she was sent to an allergist for more tests. She came out allergic to thiomercal, which is a preservative found in most eyedrops but that probably developed as a result of all the medications she was given while ill. The results showed no metal or penicillin allergy, but she was told to avoid both penicillin and ibuprophen as a precautionary measure.

I am writing this all down for one reason: to give someone else help and hope if they find themselves with a similiar, atypical reaction. The eye specialist said she was going to write a paper about this if Quinn turned out to have a proven allergy to metals. Sadly, there is no scientific proof that my own theory has any validity, the medical databases are so far empty. I think someday there will be a new syndrome discovered, a variant of SJ caused by the dual presence of metals and penicillin, neither allergy producing on its own but a deadly catalytic combination for some like my daughter. Posted by Picasa

Thursday, March 23, 2006

Hypo again!

I saw my internist again today. The results of Monday's blood test show my T4 is at 6.9 (normal is 8-22) I was surprised, because even though I felt cold and tired lately, I had put that down to fighting the cold virus that Quinn caught. That may well be, but I STILL feel better on the natural, dessicated pig thyroid than I ever did on Synthroid. May it's all in my head, but I feel like my mood is more natural, not drug induced. I felt angry most of the time, and everytime I caught myself in the mirror, I had a scowl on my face. My doctor is changing his prevvious position and now saying that there may be a small co-relation between the worsening of my eyes and hormone level. Just proves once again that doctors don't know as much as they sometimes let on. He seems impressed that I've done some research of my own. It's scary when a doctor lets on that a patient may have more up-to-date information than he has. I'm really hopeful that now that my dosage of thyroid has been raised from 60 to 90 mg, I have a pretty good shot at getting to the higher end of the T4 range, thus the lower end of the TSH range, since they are always inverse. I am impatient for this to be achieved, but I know it will take at least a month, maybe several before the drug's effects are stabilized for me. Then, I will kick the myself in the derriere and there will be NO MORE EXCUSES to staying this fat.

Monday, March 20, 2006

Week 11 Report

Back on the wagon after a load of "biz", as Paul would say, sidetracked us. None of us were being careful with our food intake and Paul was the only one who kept up the gym visits regularly.

So, this week, to get my mind off my growling gut, I am focusing on home improvements like painting, caulking, cleaning and organizing the utility room (yuck!). I had blood drawn this morning and will get the results on thursday, but I believe they will show I am nearing the high side of the T4 scale, where I want to be, because I am feeling much better lately. I would even go so far as to say that the natural thyroid hormone makes me feel more like the person I was before getting Graves. I have talked to a few engineering companies and even got a staff offer, but haven't found what I am looking for just yet. I also have some plans in the works that I am keeping under my hat, just in case you thought I was telling ALL here! Paul is switching jobs next week. He received a good staff offer that was hard to refuse. So until the right contract assignment comes along, I am a kept woman again! Quinn is working again, as a restaurant hostess. She likes it, gets to dress up Friday and Saturday nights. She is really growing up fast now. Literally.

As expected, our numbers have gone in the wrong direction after nearly a month of backsliding.

Janet 289 (gained 4) still down 6
Paul 255 (no change) still down 15
Quinn 219 (gained 4) still down 11