The updates on our little man are getting longer as we try and figure this illness out, I figured this was the best way to put it all out there for all our prayer warriors!
Last Wednesday was the first day of the high fevers for Jett, over 104 presumptively. Since then we had ONE amazing ER doc tell us that he really believed Jett has Tick Borne illness, probably Erlichiosis (see previous blog). He told us that because he practiced medicine in Missouri he was very familiar with Tick illness and he advised us that we would probably be in the hospital at least 72 hours to get the IV doxycycline in quickly. As most of you know, we got discharged the next day because the infectious disease hospitalist doctor (the one who only see's hospital patients with no local MD) informed us, while smirking, "I do not believe it's not Tick fever you can go home and wait it out. Its probably viral and will resolve on its own but we will send you with a few days of oral antibiotic and follow up with his Doctor tomorrow." Jett was so much better from ONE dose of the doxycycline that I was convinced maybe it was coincidence, I mean surely an antibiotic would not make that big of a difference with one dose?
We came home, saw our Primary care doc who also was not completely convinced it was tick illness. His symptoms were getting worse, body aches, Joint pain with stiffness, night sweats, fever that would go up really fast, fatigue. She needed blood from Jett and he just wasn't giving it. He was stuck about 4 times with zero success. From there we were sent to Arkansas Children's to the Infectious disease doc's there and the IV team in hopes that they would be able to get his blood drawn.
We were blessed in that they were able to get the blood and with that we were able to rule out one of our biggest fears, they ruled out Systemic Onset Juvenile Rheumatoid Arthritis. We were so afraid that Jett was about to walk to same road Jackson walked (or limped) when he was 2. With that ruled out (by Jacksons old rheumatologist who we trust fully), we wait for the other tests that can take a while. Tests like : cat scratch fever, staph, strep, mono. You name it.
The infectious disease doctor at Childrens told us that he did not understand why the other hospital ran all the tick tests because obviously we do NOT have Lyme or erlichiosis in Arkansas. I could not believe he said that! I had heard it was hard to get a diagnosis in Arkansas for tick illness but this incredibly intelligent MD just told me there is no way it's tick related. I work for the Arkansas Health Department, I get the reports from the CDC of "suspect Lyme" and "suspect Rocky mountain spotted fever". I know there are tick illness, not only in Arkansas, but in Cross county! I did not say a word, after all, he certainly is more knowledgeable than I am. I was not about to question him. He sent us home with no meds and that night (Wednesday, 1 week after it started) Jett got worse. He started twitching or making jerky movements, and his fevers were going back up and pushing 103 every 3 hours. He was sweating buckets and white as paper. I took a picture of him and texted it to his Primary doc who called me immediately. I told her that my gut was telling me it's all tick related and I wanted the doxycycline now because he is obviously getting more sick by the day. I pointed out that the only time his fever has come down was while he was in the hospital on the IV doxy. She promised to call me back after she called Little Rock and updated them on his condition (Infectious disease doc's). About an hour later we had the prescription called in and in his little body. They said they were only giving us a few days while we wait for the other tests. I'm sure when I send today's pic of him to his Doctor she will change her mind.
He feels so much better and has had zero fever since 2 hours after his first dose of doxycycline, he has now had 2 doses. I have full faith in Jett's doctors, but I have to follow my God given Mothers intuition. If its not Erlichiosis or Lyme then at least we were on the side of caution being that there was in fact a tick on him and he has every single tick fever symptom!
Thanks so much for all the prayers, I know they are sustaining us. Jett and I are worn out but he is running and playing today, while I obviously don't wish him to have tick anything, I am thankful for a Primary Care doctor who listens and treats the child (and the mom) and not lab work, after all labs are just numbers on a paper. The patient needs to be looked at as a whole picture not 10 min in an office.
Keep praying my friends, its working. We love you !
This how fast he gets sick. looks ok in first pic, 2 hours later 103.
This is today after 2 doses of the doxy :)
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