Monday, January 11, 2016

Trusting Yourself

We have all heard of mother's intuition, but how many of us believe in it? I am a believer. I have learned during my time as a mom, to trust myself and those gut feelings I have about things.

When my youngest child was born, I felt like there was something wrong. She began losing weight as soon as she was born and had a very difficult time staying awake. She always felt feverish and we spent the first months of her life pretty much in the pediatrician's office, as they were concerned enough to order twice a week weight checks and charting.

From age 1-2 she had more than 12 ear infections, or that's what we thought at the time. I remember driving 15 hours home from Disney World with an infant with what we thought was an ear infection that simply would not respond to antibiotics. She was seen by several specialists and her pediatrician ran numerous blood tests and tried a number of antibiotics to help.

As she got older, she continued to get sick regularly. I felt like it was at least once a month or more frequently at times. When I say sick I mean temperatures over 104 throwing up, sore throat, the works. She was diagnosed with strep throat I don't even know how many times. Neighbors stopped sending their kids to play at our house for fear of germs or mold or something causing the frequent sickness. Except that none of the rest of us in the house ever caught anything.

I continued to ask my pediatrician for tests to find out what wrong with my child. I could not ignore the feeling that their was something wrong with my daughter. It was not normal for a child to get so intensely sick so often. The pediatrician tried to pass it off as some kids just get sick alot, but I was persistent. She and I continued to do research and we were finally sent to a children's hospital to an Infectious Disease doctor (even though she's not infectious).

Within an hour we had a clear diagnosis, my little one has PFAPA (Periodic Fever Aphthous Stomatitis Pharyngitis Adenitis Syndrome). It typically affects children for about one week on a monthly basis and the intensity and symptoms can vary. There is no cure, although a steroid is prescribed that can be given during episodes. Often children can outgrow this disease during their teenage years, although from what I am hearing from my support group, the frequency of the episodes just increases as the children age. So they may only have a couple of episodes a year. As we left the children's hospital, we left so relieved to have answers at last. We had spent 4 years wondering what was wrong with our child and we finally knew. Her syndrome is terrible and maddening, but we are so lucky compared to so many others who enter the children's hospital.

If you think your child might have PFAPA, these are some of the most symptoms of an episode:

  • high temperature 103+ that does not go below 101 with ibuprofen
  • white painful spots in mouth and throat
  • extreme gut wrenching stomach pain
  • vomiting
  • difficulty breathing and choking congestion
  • joint pain and swollen elbows or knees

Sounds like fun, huh? It really could be much worse, that is the most important thing to remember. My daughter had difficulty sleeping last night and has white spots in her mouth this morning so an episode is coming. Hopefully there are some new children's movies on Redbox.

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