Finally…

For the longest time I just stopped taking her to the Dr when she got a fever. She had one or 2 ear infections I took her in for, but that was it.  She was growing OK.  Eating OK and acting like a normal child. When she did not have the fevers I actually forgot (sometimes) that she ever got them at all.  But when she did get them they hit sudden and hard.

It was in May of 2009, I broke down and took her back to the Dr. As soon as the Dr came in, I told her exactly what was going on and how I do not believe that it could be ‘just a virus.’  She looked her over, did the normal sick visit exam. She then told me it could be a number of things, one of which was a virus (go figure). I told her how I could track her fevers and I had them all written down over the past year or more.  She did go on to tell me that it is common for kids to get viruses, up to 12 or sometimes more a year, but she was happy to check other things out.  I was then anxious but relieved that I finally found a Dr. who was willing to look deeper into this.  She did a CBC w/ differential. ESR. and blood cultures.  Later that day she called and told me her blood work was pretty normal, except for a slightly elevated ESR and she was anemic. I was to start her on vitamins w/ iron and get her iron level checked 3 months later.

I sometimes wonder if anemia is another symptom of the PFAPA? I would think it is common for children to be anemic (iron deficiency) since a lot of them are so picky when it comes to food. Laney still does not eat red meat and she hates spinach…Anyone else have the problem w/ anemia in a child w/ PFAPA?

reality

I always knew when Laney was getting a fever. A day or so before they started, she would complain of leg pain/aches, she would tell me her mouth hurt in a certain spot, become very lethargic during the day and not sleep well at night. Her eyes would also start getting the glassy look and her face would look so pale. Oh how I hated this!!! I hated (and still do) seeing my baby sick like this. Before the DX I was so worried about her. Sometimes, I was scared to take her to the Dr. because of what they might say or what tests they’d put her through. Luckily, blood tests were the only test she has gotten.  So many things ran through my head when she would get fevers. Is it cancer? Could it be JRA? Is is or could it be life threatening?

Like I said in my previous post, her pediatricians always said it was a virus. There are several Dr.s at the office she goes to and she has seen all of them. Some, more than once. None of them seemed concerned and one or two of them thought I was nuts! The one Dr. actually said to me, “She is fine. There is nothing wrong with her and I think you need to relax and realize that kids do get fevers and it is usually nothing to run to the Dr for.”  However, this was one time when Laney had her fever for 3 days. I made the apt for 11am (on the 4th day) b.c she woke up w/ a high fever and looked like rotten hell. By the time we got to the Dr. her fever was gone (w/out any meds) and she was acting like a normal, then 2 y/o.

I started tracking her fevers on the calendar before this point. And she always got them every 4-6 weeks, pretty much to the day. Sometimes she would go 8 weeks or longer. The longest she ever went w/out a fever was 12 weeks. But the 8-12 weeks only happened maybe three to four times her life. I knew there was something much more to this than just a virus. And I guess it was my fault I never asked for tests from her Dr. Like I said, I was too scared to ask about it…guess I didn’t want to ‘know’ if there was something really wrong w/ my baby!

vomit, yuck!

I remember Laney never sleeping well when she was having an episode. Every single time she started her fevers…the first night she would vomit. I gave her Motrin and Tylenol religiously and w/out fail she would vomit. It started out she would vomit one time and only on the first night. After that first night, she did not vomit even if she continued with a fever. There were a few odd times she did vomit during the day if her fever would get too high. At least that is what I assumed was the reasoning for the vomiting. I still do not know if that is why she vomits OR if it is a symptom of the PFAPA? 

Her symptoms have varied since this all started. The vomiting changed, mouth sores, leg pains, neck pain (b/c of the swollen lymph nodes), belly aches, thirstiness and even her response to Motrin and Tylenol have all become non-existent or changed drastically in the past 4 years. I will go onto tell about them in later posts.

in the beginning

Laney was about six to 10 months old when she started getting these fevers. She was too young to tell us what was going on or if something hurt. I took her to the Dr. pretty often and every single time I did I heard the same things, “it is a virus. Let it run it’s course.” Or “it is a virus and it is very common for children, esp. with older siblings, to get up to 12 viruses a year.” bla bla, and more bla. At some point, I noticed she was getting fevers on a timed interval, about every 4-6 weeks.  There were times I mentioned this to her Dr. and they would still say the same things. I know there were a few times she had gotten the fever episode after vaccinations. Sometimes I blamed it on them and went about my business. However, her fever would go to 105 at times and last 3-6 days. In the back of my mind, I knew something wasn’t right and it wasn’t just a virus or from vaccinations.  I started looking on-line about frequent fevers, etc…I read everything from A to Z. The only thing that seemed to start fitting her symptoms were the Periodic Fevers.

Has anyone else been dealing with this since their child was very young? Do you know if this could be a hereditary thing? Any info. would be greatly appreciated.