The first episode that comes to our mind was when Owen was almost a year old and we were at the
beach for a conference.. His fever was high and his lymph nodes huge. He was a sick little boy. Our doctor did not seem too alarmed and we assumed it must be a virus.
That was just the beginning. Owen has had many, many fevers since then.
I can recall birthday parties missed due to fevers, his own birthday with a high fever, various occasions or traveling that ended up with a fever coming on. We wondered if he was just picking up germs.
Always the same, high fever, large lymph nodes…runs its course and we get our healthy boy back. No one ever "catching" it.
This past year the fevers became more regular. We could look at a calendar and see a pattern. Fevers coming at least once a month. It was not abnormal for them to get 105 and there were some even higher. Motrin and Tylenol would help some, but we pretty much rode them out and tried to get him to drink as much as we could. He doesn't usually eat much at all during an episode. Sometimes complains that his stomach hurts. He lays on the couch, watches television and movies and sleeps.
We had some blood work done in June that ruled out some crazy bad things it could be. We discussed his symptoms with our family doctor and other attendings that work with David. David became aware of an autoimmune disease called PFAPA (Periodic Fever, Aphthous Stomatitis, Pharyngitis, Adenitis Syndrome).
Most of the answers to your questions can be found
here.
So this Thursday we met with a pediatric rheumatologist at Cook Children's Hospital in Fort Worth. We were blown away at what a nice hospital it is. That is something coming from me who is not a fan of a hospital. There were Lego displays, a yogurt shop, Build a Bear….all kinds of neat things. The waiting rooms had cool touch screen games and T.V.s in the exam rooms. Everyone we met was extremely kind and knew how to talk with kids. From the first nurse who talked to Owen..she knew what she was doing. Telling him to show her how big and tall he was, to the little blood pressure cuff hugging his arm and making a rainbow over his head to tell us his temperature.
Dr. Perez asked us lots of questions and we were able to get some answers to some of our questions. The conclusion is that it sounds like PFAPA. There is no simple test to say, yes this is it 100%. But bloodwork is done to rule out anything else that it could be. After a bad experience at the clinic with the first bloodwork, to say I was anxious about more bloodwork would be an understatement. But the people at Cook were professionals. They had a Child Life Specialist who talked to Owen and explained what they would do. They used
Buzzy and some cold spray. He loved this part. They played a game on the iPad while the blood was being drawn and then it was over. He just sat there and was so content. Not a tear was shed! Thank you God for such amazing people in place. It makes such a difference when a child has a good experience and is not afraid. (And I placed an order for Buzzy before we left that building).
So we are basically going to continue just as we have, living and dealing with this. We are going to enjoy life to the fullest when we are fever free and take care of him when he has a fever. We pray that he outgrows this sooner rather than later and are thankful it is not something much worse.
In the meantime, I have a little boy who will be 4 in 5 days. You can bet this mama is going to try to pull together the best Lego party she can for one well deserving, Lego-loving kid!
