My leukemia's back.

[Alaskan]

One of our granddaughter's has been ill for a while. It started out with some sores on her head that got worse and turned into boils. And then sores on her arms and then sores on her torso and then sores down on her legs. Her eyes are just a horrible bloodshot red and swollen. Mom had taken her to a couple of different Drs. They tested her for the west nile of all things, and also Lyme disease. They found out she didn't have any viruses, they couldn't understand why all the inflammation. They went ahead and sent her home after three days in the hospital of tests and MRI. Here's what mom was told, and what she wrote the family. .... She was discharged from the hospital today. They still are not sure what she has but know a lot of things she doesn’t have. The rheumatologist is pretty sure she has an auto immune disease but not sure which one. We now have to give it Time see if she can get off the steroid drops in her eyes and if her rash goes away. Then follow up regularly with the rheumatologist for the next year and see what happens. She had granuloma annular 8 years ago and with her granulars elevated in her blood now they are thinking Sarcoidosis. Then we found out that is what her grandma K has so pretty sure She has it. ............ Poor thing, our daughter told us that she had said that her tears felt like fire. She's 17. Let's pray this will subside, what ever it is.

that sounds terrible!

So sorry!

 

[Blooie]

Oh, crud!! Sarcoidosis is not much fun, especially for a young girl! Ken was diagnosed with it in 1979. He has Sarcoid in his lungs, liver, spleen, parotid glands, eyes and joints. He is currently in remission again, but it flares it's ugly head from time to time. When it does the treatment is heavy doses of prednisone, gradually tapering down over 6-8 months. Back then the "gold standard" for diagnosis was a bronchosopy and a Gallium scan. He lit up like a Christmas tree on the G scan and out of 8 samples of lung tissue, every single one of them showed positive.

BUT, that said, look at the busy life he leads. He continued his career in the Navy, not retiring until 1990, so he continued to serve for another 11 years after diagnosis. He's been a professional electrician on the civilian side, a hot tub repairman, has been active in our grandkids' lives, and you all know how busy he is with his Masonic stuff. Living a good, active life with Sarcoidosis is very possible. The worst is usually the first couple months during a flare - his parotid glands get so swollen and hard that it looks like he has the mumps. In fact, that was what landed him in the hospital when he was first diagnosed - the ship sent him home thinking he had contracted the mumps. And those glands hurt like crazy - think sucking on a lemon 24/7. His liver enzymes go through the roof, with all the accompanying misery liver ailments can cause. The sneaky thing about Sarcoidosis is never knowing where the nodules will settle and cause problems. It's different for every person. And some people have the initial nightmare of symptoms, go into remission, and never have another flare up.

Ken has had 9 full blown flareups, which they tell us is a little unusual. But then "they" don't know enough about this tricky disease to be sure of anything, either. When Ken was assigned yet another new doctor at the VA, he, the doctor and I were huddled around the doctor's computer while Ken explained what Sarcoid was and the doctor was learning about it from us and the computer. Yeah, like that! Ken would much rather see his civilian rheumatologist, but has to see the VA at least once a year to maintain his disability status for exposure to Agent Orange. Says he's tired of educating doctors every 2-3 years. That and his pernicious anemia may be related, but we've never been able to establish a sure connection.

If your beautiful granddaughter does have Sarcoidosis, the initial part of the flare is always the worst. I know that's not much consolation, but sometimes any light at the end of the long tunnel gives a little hope. Your family has gone through so much - I just hate that there's another pile of liver 'n' onions on your plate.

 

[bruceha2000]

Sounds like Ken (or you) needs to write up the info on his Sarcoidosis so when he knows he's getting a new VA doctor, he can send the letter in before the appointment.

 

[sourland]

@Cynthia12 , for you and your grand daughter. Auto immune - what horrible diseases where your body attacks itself.

 

[getaclue]

Good afternoon Team Rachel. Lifting everyone in prayer.

 

[Cynthia12]

 

[Alaskan]

Good mornin' all.

Keep breathing.

 

[bruceha2000]

I am Al, I hope you are as well! Staying calmish??

 

[getaclue]

Good morning Team Rachel. I hope today has bright spots in it for everyone.

 

[lazy gardener]

Cynthia, prayers for your GD.