fevers again - Rare Disorders Message Board

acloutier · 08-24-2002, 09:24 PM

Hi everyone,
Yes I guess now my postings are working. My daughter is 17 months old and has been having "unexplained fevers" since she was 3 months old. (just after her immunizations) the doctors say it is just coincidence. If something was wrong with the shots other kids would of showed up and so far it's just been Dom. Anyways she has had all the tests and the auto immune specialist has ruled out nutrepena, mediterean fever syndrome and doesn't want to label her as having pfda because she has no other symptoms. He says the steroids don't always work so doesn't recommend them He has formed a study group with two other specialists : a hemotoligist and a rhumitory arthiritis specialists( excuse my spelling) they plan to discuss Dominique at this months meeting and see if they can concur on a course of action. He mentioned a medicine that he had tried on another patient of his that was a plant extract (iris I think) that has been used in turkey for ages to treat all sorts of things. It is not a steroid and has no ill side affects . He will discuss this with the other drs and I will see him again in mid sept. These specialists all see a few cases like dom every year and don't know what to reccommend..they hope by meeting once a month and pooling knowledge they can come up with some answers.
I really hope so. Has anyones child outgrown the fevers? Can someone describe a typical episode so that I can compare it to my daughters. She gets a fever every 19 to 25 days varying and they last anywere from 3 to 4 days with fever spiking to 104' up and down but never really lowering back to normal until the last day . We give her tylenol and motrin but try not to give her the motrin because she vomits it up. the tylenol is in suppository form and seems to help take the edge off the fever. We though of not giving her anything but because of her age we can't get her to keeping a wet cloth on her head or hot spots or eat ice cream.
ana

Sheryl Lagge · 08-27-2002, 09:01 AM

Hi ana from Canada. Sorry about your child and you going through all of this. My child who is almost 4 has had periodic fever syndrome since 1-1/2 years old. She started with her fevers about every 4-6 weeks and now she gets them every two weeks. Her fevers use to last 4-5 days with swollen lymph noids and ulcers on her throat. Her temps ran as high as 105 and we treated her with motrin and tylenol alternating. She would get sick on the motrin but I would first give her Tylenol to bring her fever down and a bath and get anything to eat or drink in her system about an hour later I'd give her motrin and then alternate as the bottle would suggest. I spent hours upon hours holding her through the night and day and just loving her. Now the every two week fevers are successfully aborted by Prednisolone, as her fever starts she get 5ml. of her med. and with in an hour or so she is back to normal. Sometimes we have to give her a second dosage because she might have had a different virus that wasn't related to the syndrome. It get's confusing but in time everyone adjusts. Please consider the Prednisolone even if your doctor is not comfortable with it. Our immunologist in Denver was very comfortable and familiar with the drug. My Pediatric doctor is Dr. Arnold at Kaiser Permanente and she has done an extensive amount of care for my daughter, call her or have your doctor call for more information on it. Let me know if you want furher information to get a hold of these doctors in Colorado. Take care. Sheri

acloutier · 09-02-2002, 09:10 PM

thank you for your feedback to my questions. I have an appointment with our autoimmune specialist in a few weeks. I will see what he has come up with and will reccommend the pred. medication and see what he says now. Do you give it to her all the time or just when the fevers start?

thanks again for your response.
ana

Sheryl Lagge · 09-08-2002, 10:55 AM

Hi ana. We give Jessica 5ml. only at the beginning of her fevers and if by the next day or so she still has a slight fever we give her another half dose. Then she doesn't get another dose until the next fever. Which in her case it is every 2 weeks. In your case, your child would only get a very small amount every 4-6weeks so there should be some comfort in knowing that. Good luck at the doctors. Sheri

acloutier · 09-09-2002, 12:57 PM

Hi sheryl,
thanks for the feedback. Our Dr got back to us and suggested 3 courses of action.
take the steriods
take the colchicine ( from iris plant used to treat gout)
but he has used it sucessfully before
do nothing and wait to see if she outgrows it?
I'm still researching into all the medications and he wants to do more blood work on her just before the next fever and during to see if they can decipher what causes the fever. I have until then to weigh my options.
I will let you all know what we come up with and how it works.
Is your daughter doing well on the medication? Has she experienced any ill effects? ( I'm most concerned about the possible growth inhibiter) she's not that big to start off with and I can't imagine her not growing .
thanks again
ana