Discussions that mention tylenol

Rare Disorders board


Hi this is my first visit to this board, so please be gentle if I am posting this question in the wrong area!

I have a 4 month old son, who up until about the end of June has been relatively healthy. Sure he gets colds, croup, etc....but nothing really serious.

About the end of June, just after preschool had ended he came down with a fever. About 104 - 105, and had a fever for about 4 days. This started on a Friday. He had no other symptoms, except for swollen glands and a head ache. His demeanor was great, his appetite was fine, was drinking fluids, etc. It was almost like he did not ever have a fever. At that same time my wife had Strep, so our Pediatrician prescribed Amoxicillan as the thought was that my son may also have had it. Then, exactly 2 weeks later, my son got another fever, 104 - 105. It lasted 4 days again, same thing, same symptoms (swollen glands and head ache). Had a strep test, it was negative. His glands were again swollen, but he seemed ok...he was only a little out of it when not on Motrin or Tylenol. The fever went away.

The 2 weeks later, my son again got a fever, again on a Friday 2 weeks to the day. My wife and I had enough and insisted that something else was going on to our pediatrician. She had blood work for Mono, Anemia, and Lead. The tests came back that our son was "slightly" anemic, and the Dr. attributed this to the fact that our son was a milk lover, and went through about 1 1/4 gallons of milk a week. She put our son on Iron drops and for the last 3 weeks, he was a changed boy. His milk intake is down to 2 glasses a day (maybe about 16 ounces). His diet has been great, he stays away from candy for the most part, eats vegetables regularly, meat, chicken, etc.His energy level was great, no headaches, it was great. Then it happened, 3 weeks to the day, this past Friday, BAM - fever of 103, swollen glands like a golf ball, and headaches.

We called our pediatrician and were told that she sees this all the time, and that it was nothing to worry about, that he may just be getting viruses this often and that it takes 3 - 4 days for the virus to move through his system. But I mean come on....a virus with no other symptoms, no runny nose, no loss of appetitie, no other symptoms expect a headache, fever and a swollen glands. I am pissed that she discounted this as a normal every day occurance? I am concerned that we may be missing something, or that she may be right?

Not sure what to do at this point? How do you answer a 4 year old when he asks why he keeps getting sick?
Yogahome,
You stated that "...a single monthly dose of Prednisone seem a small price to pay...", as I posted earlier about Prednisone, I will again emphasise dangers of using this drug (cosidering the tendency of this condition to resolve by itself) please look for it's side effects:
headache, dizziness, difficulty falling asleep or staying asleep, inappropriate happiness, extreme changes in mood, changes in personality, bulging eyes, acne, thin fragile skin, red or purple blotches or lines under the skin, slowed healing of cuts and bruises, increased hair growth, changes in the way fat is spread around the body, extreme tiredness, weak muscles, irregular or absent menstrual periods, decreased sexual desire, heartburn, increased sweating, vision problems, eye pain redness or tearing, sore throat, fever, chills, cough, or other signs of infection, seizures, depression, loss of contact with reality, confusion, muscle twitching or tightening, shaking of the hands that you cannot control, numbness, burning, or tingling in the face, arms, legs, feet, or hands, upset stomach, vomiting, lightheadedness, irregular heartbeat, sudden weight gain, shortness of breath especially during the night, dry hacking cough, swelling or pain in the stomach, swelling of the eyes face lips tongue throat arms hands feet ankles or lower legs, difficulty breathing or swallowing, rash, hives, itching...
Prednisone may slow growth and development in children. Your child's doctor will watch his or her growth carefully. Talk to your child's doctor about the risks of giving prednisone to your child. Prednisone may increase the risk that you will develop osteoporosis. Talk to your doctor about the risks of taking prednisone and about things that you can do to decrease the chance that you will develop osteoporosis. Some patients who took prednisone or similar medications developed a type of cancer called Kaposi's sarcoma. Talk to your doctor about the risks of taking prednisone. Prednisone may cause other side effects.

Of course, this doesn't mean that this is what is going to happen if you use this drug, but this is no Tylenol. It seems that the side effects are by far worse than the couse for using it, especially considering that it DOESN'T CURE this condition!
Hello,

I am so sorry to hear about your children. I didn't know ( if this is what my son has ) that this is so common. I read on another site that FPAPA is a recently recognized disease.

I just found this site. We have a 10 month old, Tyler. He has had recurring fevers every 2 weeks for the last 6 months.

We have been to 2 Pediatricians. The first ran tests, constant blood work, urine analysis. Only results showed high WBC, no bacterial growth in cultures. The second just holds that they are immune reactions to virus exposure.

Tyler's fevers usually last only 3 days, but they are always 103-105 degrees F. Tylenol and Ibuprofen barely help, and often he can't keep the medicine down. We just discovered the Tylenol suppositories, which help a little more. He eats poorly ( completely gives up solid food ), has a very sensitive stomach, is weak, and is miserable. Sometimes he has swollen cervical lymph nodes, sometimes not. He has never had oral ulcers that I have noticed, but I didn't know to look for them until reading some posts on here. He does have a small red patch that appears on his cheek right before an onset. It then peels white skin and goes away usually a day or two after the attack.

In between episodes, he is always happy. His developement is great, a little ahead of age in most things. He appears to have never been sick, and then it happens all over again.

It is exhausting for him and for the family. Tyler is our first child. I just want to know what is happening to him, so that hopefully we can help him.

What can I ask our Doctor to do to help determine if it is PFAPA? His symptoms sound like what I have read on here. I want to know if there is any specific tests that I can ask for. We live in a small town, not to say that our Doctors are bad, but they are not like Doctors in the City.

ANY HELP YOU CAN GIVE ME WOULD BE GREATLY APPRECIATED.

God Bless
Melissa
Hi all,
I am new to the boards but unfortunately not to PFAPA. Here's my story, hope it can help some of you.
My daughter was diagnosed with PFAPA when she was 5 after years of unexplained fevers reoccuring every 21 days. After years of testing for everything and numerous doctors she was finally given this diagnosis. Her symptoms started at about 9 months with just unexplained fevers, anywhere from 101 - 105 for 3 days. Eventually I started keeping a log of her fevers and every miniscule symptom. The day before she got a fever she would often not move around much. She would not crawl or climb etc..like normal. Later in life when she could vocalize she was able to tell us that her knees ached badly. She also got extremely thirsty and would only want water. Often she would throw up in the middle of the night. Those would be her only symptoms. When I took her to the doctor they often said that her throat was red so they would do a strep test ( it always was neg). The fevers would last about 3- 4 days than she would wake up perfectly healthy with no fevers and on no medicine. She never got the swollen lymph nodes or the canker sores until she was about 4. We alternated tylenol and motrin to keep the fevers down every 3 hours. Motrin worked great but didn't last the full 6 hours. Tylenol would just keep the fever stable in between but really never brought a fever down. I stopped taking her to the pediatrician as I got frustrated with the "its just a virus" diagnosis and the $20 copays! I plotted her schedule on a calender and planned life around her 16 healthy days. Eventually I lost my babysitter and used up all my vacation time at work because of her sickness and went back to the doctors being much more aggressive. She looked at her fever schedule I logged for over a year and finally sent me to an infectious disease doctor. Long story but I finally found a doctor 4 hours away that had seen PFAPA before and diagnsed her. We tried the orapred and her fever immediately went away hours after taking it. Unfortunately for us it made her cycles very close (7 days apart) and we were concerned about the amount of steroids she was taking. We opted to stop doing it and eventually her fevers returned to a normal cycle again ( 21 days). So next we went for the tonsillectomy. The ENT thought we were making the whole thing up but agreed to perform the T&A because our primary pediatrician was demanding it. It didn't work and she continued to cycle. Finally she went on Cimetidine for a year and her cycles ceased. They stopped reoccuring by the 2nd month on cimetidine. We stopped giving it after 6 months but she started cycling again so we went for another 6 months with an immediate cessastion. She didn't cycle for over 4 years. Her only symptom that never went away is that she always had a problem with canker sores. They are not cyclic and I have not been able to notice any pattern with them. Now that she is approaching puberty it seems to be creeping back. She just turned 10. She is just getting headaches, bodyaches( knees) and bellyaches. Just once did she have a low grade fever at the same time (100) I started plotting it again and it has been cylclic, every 32 days for about the past 6 months. Of course I wonder is she going to get her period or is it a return of PFAPA which is why I started doing some more research on this. So if anyone has any ideas or had a long break than a return or any long term experience please let me know. I also don't mind answering questions from anyone as I have a lot of experience with this! Sorry for the long post!