Monday, June 1, 2020

Benjamin

I know I have gotten behind again. I just find that I am busier now with all the kids home. I hope to make several posts to cover many things that have been going on! How can I be so busy when I barely go anywhere?

Tonight I will catch up on Benjamin. He had a second episode of fever. These episodes last about 5 days and if you don’t give him fever reducers around the clock his fever jumps to 105 and he gets dizzy, cries, gets a headache, complains his body hurts, says he can’t remember stuff. Generally really miserable. That means I have 5 days of giving medicine every 4 hours. It is exhausting.

We did blood work in the middle of his fevers and his SED number was high. Honestly I don’t know what it really means but that number combined with his history of having high fevers for just one night at a time leads his doctor to believe that it is possible that he has some type of autoimmune disease. He has a referral to a rheumatologist but apparently it takes a while to see one. Last week he went in for more blood work with his doctor. I am waiting to see what those results are. We are hoping that he was just fighting something. If not we hope to get some answers so we know what we are dealing with.

Anyone else dealing with this type of health issue? New one for me.





Tomorrow, our foster update...

5 comments:

  1. Does it take this long because of covid or your insurance or where you live. One of my niece's was seen within 2 weeks and i was seen also in about 3 weeks. Once she got her diagnosis and it was in t he same family as mine they are now saying it runs in the family. Which i find hard to believe because i am 1 of 7 and have over 40 niece's and nephews. I use to be an ultra orthodox jew and its only me and her. She is doing well now and they get a prescription for steroids whenever she has an episode along with monthly injections. Most people i know travel up to 2 hours for specialized doctors. You might want to call the rheumatologist office and find out what test they are going to order, specific blood work, x-rays, mri and such so that when you do get in you don't have to then wait to have the tests done and then see the doctor a second time. Good luck. Also sometimes they have a nurse practioner or a fellow who can see you first and start the ball moving. At least that has been my experience for the last 20 years, but I lived in Baltimore, long Island and now New York city

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  2. Did they test him for Lyme Disease?

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  3. My friend had a similar issue with her daughter. She suspected that it might be periodic fever syndrome. It's something to look into. I hope you get some answers. He's getting so big!

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  4. My 6-yr-old son had very similar symptoms. We eventually had his adenoids removed and now he's been fever free for 6 months!

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