Patrick has had an illness for over a year now. I started recognizing the pattern the beginning of last year. It appeared he kept getting Strep Throat every 4 weeks. And then having other sicknesses (usually respiratory, in between) I talked to Dr.s about it but they couldn't give me any answers because I hadn't documented everything and I couldn't always remember everything. So I documented when he got sick and for how long. What his symptoms were and any detail I could think of for about 6 months. Then I was able to tell his Dr. all the information. At which time we had to watch and look for certain things and trouble shoot to figure out what exactly was wrong with Patrick. We finally came to the conclusion that he has something called PFAPA ( I put a link there if you wanna check it out.) Tell you more about it below. So anyways now we are giving him Steroids for 3 consecutive months right at the start of an attack he gets a dose. He took the steroids once before a few months ago and it made his attack shorten to one day instead of the usual 5-7 days. So he will take the steroids for three months. I will document and monitor. And then we go back to the Dr. with our findings. At which point we will make a decision to go see a rheumatologists or not. Access if we should take tonsils out or not all that fun jazz.
Patricks symptoms:
Most of last year he started his sickness some day between the 24th-26th of the month. So I could count on that. But Patrick took some antibiotics for an eye infection a few months back and tried steroids one time as well in there so his starting time seems to present some time between the 14th - 20th of the month. I can count on Patrick getting sick one of theses days.
Day one: usually starts with a migraine the day before and the day of. He is all of the sudden lethargic and has really dark circles under his eyes. You look at his eyes he looks really sick even though he hasn't shown much symptoms. He then gets a really sore throat. Is really unhappy. And by the afternoon to evening he has a fever.
Day two: He has a really high fever (this last time around it was the highest it has ever been at 103). We switch between IB and Tylenol but the only things that helps for a short time is the IB and it isn't a guarantee it will help each time he gets it. He can't eat as he has sores in his throat. (this past time he got them in his mouth too and on his lips). He stays in bed all day and sleeps all day in between doses of medication. He has leg pain and joint pain. If his fever goes down it never goes completely away.
Day three and four: pretty much look just like day two. The sores on his lips didn't present til day three or four this past time. It seems two, three, and four are the hardest days.
Day five:Usually by this point his fever is much lower. He is able to eat a little and has moments of feeling good and then feeling horrible. Although this last time was worse then it has ever been and he pretty much felt horrible until the last day.
Day six: Usually the last day. Fever is lower, able to eat more, and by the end of the night he seems well enough to sleep in his room. But you don't really know if it is the last day until he wakes up the next morning feeling great.
Some times his sickness lasts 5 days. Sometimes it lasts 6 days. With steroids shortening his attack to 1 day its hard to not want to give it to him. But you cant give a kid steroids every month and it really kills that attack but brings the next one on much sooner.
This is something that has to have been in our family somewhere. My family has so many illnesses it could easily be on my side but I have no idea who has it. I would love to know. It would help knowing if it lasted 2 years for them or 4 years for them. It would help better access what to do in Patricks case.
I usually plan less things around this period of time and just prepare for it. And that is what is going on with Patricks health. He has a hereditary disease.
Posted some Pictures of Patrick sick, or passed out from playing too hard, or at the Doctors.
2 share your thoughts:
Oh my gosh Chrystal, that is heartbreaking! That poor, sweet boy. I hope the doctors figure out a way to help him!
:( poor boy. I feel so bad seeing his pictures and hearing about it. I hope for all of you the dr.'s can figure it out and that you can all get some relief soon.
Post a Comment