Anonymous wrote:

Anonymous wrote:Had something similar years ago. It was the flu. Gave me a Z pack and it went away. Never experienced anything like it again.

Excuse me but z pack doesn’t work for the flu. The flu is a virus and z pack is for bacteria.

You’re excused. . Sorry it was years ago and I’m not a doctor. Maybe it was another flu medication that finally worked. But I had an extremely high temperature and muscle aches so bad I could not walk.

Try to get someone to spell you for a few hours, OP.

So sorry. You’ll get a lot of diagnosis here. Our child had something similar and they did a bone marrow biopsy which helped.

Thinking about you and your son tonight. I hope they figure things out soon. Friends and acquaintances would be happy to help so reach out if you can think of anything that would help.

Try to get some sleep (but that will be easier when you have the pillows from home-- that's a good move). Prayers being said for you and your son right now, 4 a.m. xo

Prayers, OP. 🙏🏽

OP here, having a rough night. Since hospital time is really it’s own world we had a discussion with the doctor at 12:30 am. He’s waiting for 4-5 test results to come back, they are collaborating with the infectious disease MD at children’s but at some point they might want to see us there. All unknowns at the moment, he’s leaning towards tick related disease and/or a combo of something else. Long story short reality sunk in that we are probably going to be here at least a few more days. My son and I never really thought that this would be more than a day or so, so he’s upset about that. Also having a hard time with his IV arm tonight and unable to sleep. So we talked with the Dr and RN on tonight and fixed his iv issues, found the snack room and I placed an instacart order for some frozen Amy’s meals for me and ice cream and hot pockets for him so we don’t have to rely on people to bring us food or get delivery when hungry (he hasn’t really liked the meals here) Also to get pillows from home, our laptops etc dropped off tomorrow and make it a little more comfy in here. Anyway, I know a week in the hospital is nothing compared to what others have done but it’s scary the first time around! Thanks for all your kind words and suggestions and for letting me vent at 3 am!!

Anonymous wrote:I hate to be a google alarmist, but this trigged a memory of articles about a polio like illness that spread amongst children in 2018 and was expected to be prevalent again this fall. Wanted to share Incase it’s not on the radar.

I hope your son is on the mend, OP. ❤️

https://www.google.com/amp/s/www.denverpost.com/2020/08/19/acute-flaccid-myelitis-afm-symptoms-covid-colorado/amp/

Accute flaccid myelitis, you mean?

That's what I thought of too but it doesn't fit the symptoms:

https://www.cdc.gov/acute-flaccid-myelitis/symptoms.html

I hate to be a google alarmist, but this trigged a memory of articles about a polio like illness that spread amongst children in 2018 and was expected to be prevalent again this fall. Wanted to share Incase it’s not on the radar.

I hope your son is on the mend, OP. ❤️

https://www.google.com/amp/s/www.denverpost.com/2020/08/19/acute-flaccid-myelitis-afm-symptoms-covid-colorado/amp/

Anonymous wrote:Throwing out another rare possibility--first episode of Familial Mediterranean Fever or another periodic fever syndrome.

Former more likely if child is of Mediterranean, Armenian, Turkish, Arab, or Jewish descent. Frequently, but not always, accompanied by stomach pain. Joint pain is very common. Sometimes there is a rash, especially on lower leg. Fevers usually resolve after 3 days.

CRP, ESR, and white blood cell count are usually quite elevated during an episode, same with serum amyloid A (SAA), fibrinogen, and beta 2 microglobulin. Colchicine can be helpful in bringing down the fever during an episode and is also a daily medication for those who have it.

Fascinating. This was the one generic abnormality that came up in my genetic screening when I was pregnant! I have no idea what is is and haven’t thought about it since, but this is interesting. Good to know!

Anonymous wrote:

Anonymous wrote:Throwing out another rare possibility--first episode of Familial Mediterranean Fever or another periodic fever syndrome.

That was my thought as well as the symptoms described m daughters Periodic fever syndrome but... I think it would be quite unusual to have a first episode at age 12. Usually these things start in infancy.

PP from above. My DD had first Familial Mediterranean Fever episode at 14. They now say 90% of patients have their first episode before age 20.

Anonymous wrote:Throwing out another rare possibility--first episode of Familial Mediterranean Fever or another periodic fever syndrome.

That was my thought as well as the symptoms described m daughters Periodic fever syndrome but... I think it would be quite unusual to have a first episode at age 12. Usually these things start in infancy.

Throwing out another rare possibility--first episode of Familial Mediterranean Fever or another periodic fever syndrome.

Former more likely if child is of Mediterranean, Armenian, Turkish, Arab, or Jewish descent. Frequently, but not always, accompanied by stomach pain. Joint pain is very common. Sometimes there is a rash, especially on lower leg. Fevers usually resolve after 3 days.

CRP, ESR, and white blood cell count are usually quite elevated during an episode, same with serum amyloid A (SAA), fibrinogen, and beta 2 microglobulin. Colchicine can be helpful in bringing down the fever during an episode and is also a daily medication for those who have it.

Lots of healthy vibes OP. We will keep you in our prayers.

Sending you good thoughts OP.