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Frankie had an emergency appt with his pedi yesterday because of a 105 fever that wouldn't go away with max dose of motrin. There was no obvious signs for the fever(chest, ears and throat looked good) So we were sent to the hosp for blood work and a culture. His white cell count is up, so we are being called in an antibiotic pending the 72 hr culture. I also got the number for infectious disease specialist in Rochester, NY. This fever only illness has been happening almost once a month for over 3 1/2 years(it started when he was 2 months old). Is there anyone else here that had this problem?
Bring this up to the infectious disease doctor (who almost certainly will have heard of it). If that gets you nowhere, see if you can get a referral to a geneticist. If the doc ends up recommending you remove the adenoids, let me assure you, it's a very simple operation. My older son had it done when he was 2.5 years old, and it was a breeze! He was home the same day (cranky, tired, and a bit dazed) and perfectly normal the next day.
I was going through google earlier and came across that! I was going to bring it up with the IDS.
Strange that in the article it says that prednisone helps with this. In Sept when he had a massive chest/double ear infection he got a script for that and the fever was gone within hours of the first dose! It was his first time ever on that also. That was when he was diagnosed with asthma(which I have)
For this episode his doctor put him on Cefprozil.
I already have to go see a geneticist because of family history of Ehlers Danlos Syndrome and Lupus(before EDS was diagnosed). I can't believe I found someone that has gone through what we are going through.
My son didn't end up with a periodic fever diagnosis, but I learned about it because the idea was tossed around. His was a continual low-grade fever for 2 years (still, actually, though not as high anymore). He was usually fine during the fever, but he was more prone to illness. Then he started getting weird stuff on top of it like intussusseption. We finally got a diagnosis of IgG (and eventually, IgA) deficiencies. He seems to be outgrowing it, so we're hopeful. Children usually outgrow it by age 2 if they will at all. If not, he'll be getting IV infusions of Ig about every 3-4 weeks for life. It's extremely expensive, too. He's doing much better now than he was this time last year, so we're really hoping we're seeing the end of the deficiency. We'll know in a couple more months.
My 3.5 year old daughter has just been diagnosed with PFAPA this past December after a 3 year history of periodic unexplained fevers (102-105.4F) lasting 3-5 days every month. The diagnosis didn't come easy. In the beginning her only symptom was the high fever. As the months went on, she began experiencing: joint pain, swollen adnoids, headaches, multiple mouth ulcers, extreme fatigue, and a lower abdomen pain. Just so pitiful to see. Doctor visits confirmed there was NO source of bacterial infection, and diagnosed her with recurrant viral infection. Lab work showed all her blood levels to be elevated.
At the age of 2 she was admitted to the Children's Hospital after a month long episode of fever. We were admitted for 1 week for extensive testing. She has ungone every test imaginable, including a Lumbar Puncture. Every test came back within the normal limits. They nicknamed her 'their little mystery'. She was diagnosed with anemia during our stay, but that didn't explain the fevers. Also during a eye check, looking for Uvitis, they discovered she has very poor eyesight; again doesn't explain the fevers. She was discharged with no diagnosis for the unexplained fevers. We were told to keep a detailed fever journal, and follow up with the Rheumatologist in 5 months.
In July of last year, we were given Prednisone (Steroid) to take at the onset of a fever, to abort the fever. I had the instruction to take her to the doctor BEFORE giving her a dose to ensure we don't miss an infection of some sort. Prednisone would mask the symptoms of infection. The first dose of Prednisone, WOW.......fever and ALL symptoms disappeared within 2 hours! We were amazed. The bad thing, fever returned 2 weeks later. Prednisone again, fever gone within the 2 hours, but returns 2 weeks later. We found that while Prednisone may abort the fever and symptoms, it made the fevers come back more frequently. We continued on this regime until mid January of this year. We now have a diagnosis, after multiple other things were ruled out, such as Hyper IgD, Cyclic Neutropenia, and Familial Mediterranean Fever (FMF).
DD has been started on Cimitidine, which is MOST commonly used to treat Acid Reflux in adults. Its been proven to work, and is MUCH safer then Prednisone. She takes 1/2 a tablet (crushed) 2 times a day. Its too early to say if its working yet. She is also still on the Prednisone as needed, and has had it once so far since starting her Cimitidine. We follow up with her doctor again in April, and hopefully we will avoid surgery (Tonsillectomy/Adnoidectomy).
I know how you are feeling about these fevers. They are very difficult to watch and handle. My DD also doesn't respond to Motrin/Tylenol. Thankfully, we have never had a seizure due to the very high temps. Ask to be referred to a Pediatric Rheumatologist, and Infectious Disease Specialist. Keep a detailed journal of the fevers, and every symptom he has, bring it to the doctor with you.
You can PM me anytime if you want more information, or just support. I've been in your shoes! Hugs mama!
proudjmmom- OMG! I am so happy you posted this. We are going to be calling a Pediatric IDS and go from there. I will start keeping a journal of all fever episodes along with what I give him. We also haven't had a seizure with even the highest fever of 105.6. I got a call on Friday that his culture came back clean. So even though he had an elevated white cell I guess the culture was negative for infection?(!)...I can't thank you enough right now. This has helped me a lot with my research..
I am so very happy to help in any way I can! I know what your family is going through. I know how difficult it is to see your child suffer every month. I wish there were more support out there for this condition, but honestly there isn't a lot. I do have a book on the way called "PFAPA: Sierra's Story".
Keep your journal very detailed, obtain your son's Lab records from your doctor to take with you to the IDS.
Also, I forgot to mention in my previous post that before our GP sent her to the Children's Hospital, she was treated with multiple courses of antibiotics. All of which was later discovered were VERY unnecessary. At one point she was even on injection antibiotics, which was very difficult for everyone. After her admission, I had 1 pediatrician prescribe antibiotics, because she presented with a high fever, and her ears were 'red'. I refused to fill the prescription, and let the fever run its course. Once her fever finished, I had her seen again, and voila, NO signs of infection, or even slight redness. After a while you just learn to pick out a 'typical' fever episode vs. an infection.
Please keep me posted regarding his upcoming specialists appointments. I am very interested in the outcome. To me, it does sound like PFAPA, but there are other disorders that present the same as PFAPA, such as Cyclic Neutropenia or FMF.
Again, anytime you want support, i'm only a PM away. Hugs to you and your family while you deal with this, and find a diagnosis!
Hi pfmommy! I'm new to this board. I recently posted in the Autoimmune Disease board about my daughter. She has Chronic Cyclic Neutropenia (although it is technically considered a blood disease) and we face the same issues although have never had problems with her white count being high, it's always too low or "normal".