I know that Rowan has a lot to deal with already, with being 2 and all, and this probably just intensifies everything. Poor baby.
We received the blood work results, and according to what the internet says and our new ped, it looks like everything is pointing to a complete diagnosis of PFAPA. His ESR and CRP results were pretty high while he was in the middle of this last episode, but were normal this past week when we had blood taken again. He also seems to always have a low LYM in his WBC results (even back when he was really little). Not sure if this has anything to do with it, but you can bet we will be asking about that.
We are waiting for his PIDS doctor to return from being out of the country so that we can set up an appointment and decide on what the next step should be. I guess we also have to get the "official" diagnosis from him.
Rowan starts a wonderful MDO program next week. He has been so excited about "going to school" and "making new friends." This program/school is such a blessing, and I am thrilled that we were able to get him in! We had open house yesterday so that we could meet his teachers and see his classroom. Rowan also has a peanut allergy (which I thought would be "his thing" until PFAPA came along), and thank goodness this is a peanut/nut free school. One less thing to worry about with him. When we met with everyone yesterday, they were SO wonderful in providing us with all the necessary information about the school and how they make every effort to prevent a peanut reaction. Rowan is the only child in his class with a peanut allergy, but I know there are many in the program who also have Epi-pens for different allergies.
So here I am, talking to the teachers, and they are so prepared for his peanut allergy, and all I can think about is this "bomb" I am about to throw on them about PFAPA. When I started to tell them about it, they were so sweet, but really had no idea what I was talking about. I brought them a hand out about PFAPA so that they could do a little reading if they felt like it. I was so thankful that they were so willing to learn more about it. They asked me what it was that I needed them to do. I wasn't really prepared for that question. So here are the things I told them (incase another mommy gets in this position)...
1. I would try my best to not send him to school if I believed we were about to start an episode. (No attendance policy- thank goodness!)
2. I would love open communication between myself and them about his behavior and how he is acting, as well as any questions/concerns about PFAPA.
3. If he looks like he is dragging, has red cheeks, or is not acting himself, to take his temp and call me. One of my fears is that he won't have a fever before he leaves for school, but develops one while at school, and them not catch it. I told them that his temp can increase pretty quickly, and that this could possibly cause seizures.
4. I asked them if they would be willing to administer medicine to help control a fever if it happened while at school. Typically they don't administer fever meds, but they said they would make an exception for Rowan as long as I had a pharmacy put a Rx/label on the bottles. (So to do this, you have to call you ped and ask them to call your Pharmacy with the exact dosage for administration. They pharmacy will then put a label on the bottles, and you can drop them off at the school. Thank you so much to my wonderful friends A and M (pharmacist) for giving me this info! Don't know what I would do without them!
5. I let them know that he is not contagious while going through an episode, and that they should not be worried about him "infecting" other children. (This kind of broke my heart to think that others may fear being around him thinking that they could "catch" what he has.)
6. I really wanted to ask them to LOVE my baby as much as I do. =) He's very easy to love. (except for maybe when he is on Prednisone....just kidding)
You never think that you will have the "sickly" child of the class when your little ones start school. Having been a teacher, I know the anxiety and stress it can put on a teacher. I am so grateful that his teachers and school seem to be easy going and eager to learn all about him. When we left yesterday, he had a very unusual meltdown. I sat in the back seat of the car to keep an eye on him on our way home, and saw such a difference in color between him and my daughter. He looks so pale and worn out with circles under his eyes. I pray that we find a "cure" soon, and he can get back to being a healthy little boy!
Pics of Rowan playing outside today!
**Addition**
My daughter has been running a low grade fever the last couple of days. Can't seem to find anything wrong with her (just went in for a well check up last week). Praying that she doesn't have PFAPA too. This is about the time Rowan's fevers started, and they started low. Anyone hear of siblings both dealing with PFAPA???
No comments:
Post a Comment