dp is so far confounding medical science and is sooo fed up

[wrinklytum]

He has now been hospitalised for 9 weeks and undergone loads of investigatons.They think he has an autoimmune condition but he has no firm diagnosis and seems to be not responding to current treatment.I am at my wits end and christ knows how he is feeling.He is stuck in a cubicle doped up on analgesics,steroids,cytotoxics and various antibiotics and is soo fed up.He weighs about 8 stone and is so thin.He has been so poorly.I am very for him.

Aw WT

How frustrating for him & for you too!

What else are they planning on testing him for?

Do you have any kids?

Sorry to hear this WT. How are dc reacting to the situation?

oh wrinkly - that's scary Hope you get a diagnosis soon and things start looking up.

I have 2 kids,one nt and one sn.3 and 1.They think he has a rare auto immune vasculitis.He is being treated with steroids and cyclophosphamide chemo drug but has not responded as they thought he would.I cannot fault the hospital as they have probably saved his life a couple of times (he went into acute renal failure and developed a clot on his main vein too).He has had loads of scans, biopsies,you name it.All of his blood cultures have come back negative.The latest idea is to do a white cell asssay which involves trying to inject a radiactive dye into him to try and see where in his system the white cells that fight any infections go to try and pinpoint why he keeps spiking temperatures.They have excluded HIV,TB,lymphoma.His latest symptoms are parotiditis and his face is really swollen.He has been on every antibiotic/antifungal under the sun.Poor man.He is only 39.

Oh WT! That sounds horrendous!

If he's having a labelled white cell scan you need to find out if he's having technetium or indium labelling as it will make a difference to the length of time the children will be have to be careful of him due to the difference in half-life.

It's a fairly straightforward procedure. They will take about 120ml of blood from him. They have to use a wide gauge needle so they don't damage the white cells when collecting them i.e. make a bigger hole in his arm than usual. They then separate those out from the rest of the blood, label them and reinject them, again using bigger needle. They usually take serial scans to see where they go. The scan time is 5 minutes plus and the longer it is since reinjection, the longer the scan time and he needs to keep really still, but it is just a case of lying there.

The best way to reduce radiation dose to those around him is to drink plenty of fluid and pee frequently to prevent keeping a large amount of fluid in his bladder. The kids shouldn't sit on his lap or next to him for longer than 5 minutes, this also applies to any pregnant visitors, but I'm sure the hospital will give you all the information.

I hope they sort him out soon.

Any news, WT?