2k (Tim) no increase in nplate? WT...heck?

Tim is low again, well he's never risen more than a slight rise for a few days from IVIg. His hemonc will not raise the does of his nplate! I'm getting pretty tired of it. Tim's got wet purpura on his body, his arms, face, torso, neck, and in his mouth. The longer he goes without his counts coming up, the more of a bleeder he becomes...but this doctor will not listen to anything. In fact, he never even sees Tim, he simply writes an order and he comes in for counts and a shot...a worthless shot at this point. I'm considering moving back to North Carolina so he (and my other son) can receive proper care. Its just getting very ridiculous.

Luci, can't you just find another doctor there? Surely there must be better. Have you checked at K.U. Med? My first husband went to Med school and did his residency there. I knew many fine doctors and nurses there,and they are a research and teaching hospital. I don't think any of them would have treated you the way this guy is!
April

Unfortunately, because the health insurance racket is so corrupt, and because the medical system is controlled by these corrupt organizations, my son cannot get health insurance for a reasonable premium-thus we are forced to take him to the children's hospital here in KC. Its a good hospital, but this doctor is supposedly 'the guy to go to' for itp. Unfortunately, the guy literally NEVER sees tim, he treats his numbers, and not well. I'd much rather take him and my other son to KU, but they don't take missouri medicaid, the only insurance they have because of the corrupt system and the corrupt congressman that make laws to protect their personal investments in that system. (that's my soapbox).

I took Tim in to the hospital last night for emergency IVIg to bring his counts up a little bit. He's getting more and more bleeding symptoms, with blood blisters all over him, his skin, in his mouth... He was spitting blood all day yesterday and has had a few nose bleeds too. Not sure what his counts might be right now, but of course two days ago they were 2000. I think likely he's lower because he tends to have the giant platelets that mess up the count. So I got a chance to talk to the nurse practitioner about my issues with them, that they don't trust my insight at all and that the reason he's so low now is because they didn't listen to me way back in May and over the course of the year when I said if they don't give him a maintenance dose, he will be back down to zero and have difficulty getting back up again. I don't know if they heard me or not, but I made it very clear that it was their fault. We'll see if they chance their approach at all. I also mentioned familial/congenital Thrombocytopenia and she wasn't sure what the criteria was...so I told her...and they MIGHT look into it.

Orrr, poor Tim. That sounds horrible, and it must be so disappointing for him to be back there after having had such a good run recently. You sound like as if you left the hospital in no doubt about how you feel anyway It seems really contrary that they would give him constant rescue treatments no bother, but won't give him the treatment he needs to avoid them.

All power to your elbow! :laugh:

Yes, I finally got out what I wanted to say. But I had a hard time getting them to understand. They wanted to focus on the fact that he missed his shot last week, and I kept saying, "you know what I said would happen has happened, and we didn't come during times that he seemed to have high platelets because you wouldn't treat him unless he crashed, so I saw no reason to subject him to weekly blood draws." Plain and simple. I hope they get it now. He's staying in again tonight for a second IVIg. They are concerned with his bleeding. I love to say, "I told you so".

Ugh...how frustrating. I'm not sure if we've talked before...it's been awhile since I've been on the board. Have you tried a huge intake of Vitamin C? ITP peeps bodies are under oxidative stress, so their bodies use up way more Vitamin C than they're getting. IT's just a thought, maybe the Vit C will help repair the cell damage and weak vessel walls, help a little with the bleeding.

SO sorry...keep us posted.

Thanks I'll try the vit C. He's home from the hosptial today. After two courses of IVIg his counts are a whopping 14k. I hope they get the message finally.

Josh is at 2k now, but without any of the symptoms that Tim is experiencing. They say to go for a saturation point in Vitamin C, meaning 1000 mg of C per year of age. So technically my son should be getting 9000 mg a day, but in reality, he's getting about 6000 mg. Any more gives him diarrhea. But he has only had the occasional nosebleed, very mild, a few hematomas and some petechiae.

Check out the natural forum that's on here.