April 5, 2008

PFAPA and Ivy- updated April 8th

I've been meaning to do a post about Ivy's fevers. Mostly to share with everyone what PFAPA is and how it affects her life.

Back on Ivy's first birthday, she was diagnosed with a double ear infection. This was on a Monday- during her well baby visit. She was in a great mood and hadn't complained at all about her ears. But, the doctor said they were really bad. The next day, on an antibiotic, her fever spiked. By Wednesday she was turning blue and having 106.5 fever. We went to the doctor several times during the course of the week. She was on three different antibiotics. The second one took care of the ear infection but not the fever. They ran blood test, urine test etc and they just didn't find anything too out of the ordinary. She had some elevated numbers but nothing too outstanding.

We were able to capture her "blue-ness" in photographs. These pictures finally got the attention of all of her doctors. We then had an EKG done and an ultrasound of her heart. Both showed her heart to be normal. They continued to run blood tests and urine test- all of which ruled out blood diseases, cancers or arthritis diseases (such as Stiles Disease).

Her fevers continued every few weeks and started lasting for 4-6 days. They then did x-rays of her to see if there were any obvious tumors. Those didn't show anything, so they did a full body CT Scan. What a trooper she was for that. They didn't even have to sedate her.

We've tried multiple medications for it, and nothing has really worked. Now, 15 months later, we are still doing fevers every 3-4 weeks.

A typical episode starts out the night before the fever hits. She struggles to go to sleep and drinks A LOT of milk. Then she wakes up 2-3 times more and drinks more and complains of her legs hurting. She will whine and cry several times through the night and say, "my legs". Then by afternoon the next day, she starts with a low grade fever (99-101). By that night it's up to 103- 105 and she's awake for 3-4 hours at a time (this pattern continues for 2-3 nights). We'll alternate Tylenol and "Ivy-profen" every 3 hours and she'll usually get at least one bath a night (in the middle of the night). She'll be extra clingy the 4-5 days that the episode continues. Then about 3:00 in the afternoon on the 4th or 5th day, the fevers gone, she's happy and she quits complaining about her legs.

She recently started drinking Emergen-C and we've had two episodes since, but neither have been quite as severe as they were before she started taking it. Although her fevers haven't gotten as high, she is just as miserable and complains about her legs hurting.

PFAPA typically affects the tonsils, adenoids and children will have ulcers in their mouths. Ivy has none of those, but she does have joint pain. The joint pain concerns me- maybe we don't have the right diagnosis. But, everything else seems to fit.

The Children's Hospital at Harvard wrote an interesting article about PFAPA and tonsillectomies. It really makes me wonder if we should do the tonsillectomy. We are planning on taking her to an iridologist to try the holistic approach. My concern with the tonsillectomy is that it makes the fever go away but she is left with joint pain every three weeks- with no explanation.

I'd love to have you weigh in on what you think we should do. The past 15 months have been very tiring on Ivy and the rest of the family. My mom can tell when one is coming on because she starts to look extra fragile. Hopefully she really will outgrow this syndrome soon.

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