Q and A

Ok, so this is more of a Q than and A, but still. I have so many questions going through my head, and have read so many conflicting stories about PFAPA. If you have experience, or know someone who has, please answer any or all of the questions. Any kind of help will be beneficial!

First off, I had a nurse friend of mine make a comment about the blue fingers and toes. I thought I would share her response incase anyone else maybe dealing with it.
"The blue of the fingers is pretty simple to explain. Simply put, it's a correlation between high heart rate and low volume (some level of dehydration) as you mentioned. The body does a shift where it pulls blood into the "core" until it stabilizes again."
Thank you so much Paige! Now I am armed with information incase it happens again. I will push more fluids. We are getting pretty good at "bribing" him to drink. This past episode, my husband started to offer him gifts (books, stickers, toys) and money (coins) to put in his piggy bank, if he took a sip of water. Not sure if it's a good thing that he already knows money has value, but kind of thankful that he is not quite aware of the value that each coin has. We were pulling out every penny we could find!

1. Recommendation for a really good and accurate thermometer??? I have tried the quick digital one (under his arm) and I have to do it three times before I can get it to go as high as his temp. I have another digital one that takes about 60 seconds to read. I feel like this is the most accurate, however, try holding a 26 month old down for 60 seconds without moving the thermometer 100 times a day! ;) We also have the ear thermometer. This one gives me different readings every time I take his temp. I know it says to point it toward his nose, and I really try to do it the right way, but it doesn't seem to work. I figure we need to invest in one that works pretty well, regardless of the price.

2. I worry about giving him too much medicine. It says on the box that it can cause all sorts of liver and internal damage to people. Should I be concerned about the fact that I am alternating Motrin and Tylenol, every four hours, for days, every month??? I don't know what our other option would be. We have been told not to let the fever spike because it can cause febrile seizures, especially when it spikes quickly (and his do- 100 to 104 in 30 minutes!). Febrile seizure are more of a concern than a fever, from what we have been told.

3. Has anyone noticed that the fevers get higher the longer they deal with the syndrome? When he was younger, they wouldn't get over 103 before meds. Now they are going to 104.5 with meds. I have read that some deal with fevers as high as 107! What do you do at that point? ER? I have been told to put him in a luke-warm bath, but also told not to. They said that if his body gets cold in the water, then he starts to shiver and his body tries to warm itself up- increasing his body temp. We have experienced that with just a normal warm bath while he was sick. =(

4. I have read mixed reviews about surgery being a cure. I pray that it is. To have their adenoids and tonsils taken out, could stop the syndrome. However, I have also read that for some, the fevers come back after, and others say that the fevers stop, but all of the other symptoms are still present. Any light shed on this would be helpful. Also, what age should the child be to have the surgery? We have been told that Rowan is too young, and should be closer to 3 before considering the surgery. Something about not being able to get younger kids to drink enough to stay hydrated???

5. Alternative medicine??? Anti inflammatory diets? Tart cherry juice? Extra vitamin D? Have these things worked for anyone?

6. Just from research and asking questions, my husband and I think that the groin pain is from swollen lymph nodes in that area. Also, maybe some of the joint pain is from swollen nodes around them (behind the knees, in the feet)? Anyone out there dealing with the same thing, or have knowledge of where lymph nodes are located? What about the back of your neck/head?

7. I have also read that after giving Prednisone, the episodes become closer together. This terrifies me. If someone could clarify- did it happen after just one dose of Prednisone? How much closer (I have read half of the normal time)? If you don't give it again, will they go back to 4-5 weeks? Are they worse?

8. Has anyone else experienced skipping a month in the summer (or anytime) and had the next episode be a really bad one? Ideas about kids skipping in the summer? Heat related???

9. Finally, what does it feel like? I know there are adults living with this syndrome. If you could shed some light on what my baby is feeling, I would be so grateful. Anything that I can do to make it easier on him during the episodes would be wonderful.

If anyone is dealing with the "roid-rage" and wonders when it will be over. Rowan is 100% back to himself today!! I am so very thankful. So the Prednisone was given Friday morning around 9:30am. It is now Wednesday. That's how long it took! Blah!
Grateful for the healthy weeks in-between. It's amazing how you can be around him now and never know what he just went through last week.  Just a few pictures of Rowan and his sister playing this morning. Made my heart so happy:

                                         (Rowan showing her the "rainbows" on the wall.)

(She adores him so much!)

                                     (My sweet happy babies- what a great morning it was!)