Timothy 7k

We just moved to the Kansas City Missouri area. Timothy didn't have an appointment for two weeks, which we'be done before with no problem. We could tell he was dropping this eek because he has some bruises and yesterday his gums were bleeding. We met the new hemonc and he had Soooooo many questions. The CBC came back at 7k, though I don't think the hemonc expected it because Tim didn't have many bruises (he can be at zero and not have a single bruise).

I did tell them two weeks ago that Tim uses NPlate, but apparently they didn't think to make sure they 'have' it or what requirements there are. His hemonc is not registered to use Nplate, but thankfully his collegue is. I'm wondering why they didn't put us with that one, but oh well. So, they have to order the Nplate and it will be wednesday before it comes. They said we could wait until then and I said, "he will be at zero by tomorrow morning". So, since Tim has a very minimal response to IVIg (go up to maybe 40k for a few days) we are in the hospital getting IVIg.

I was soooo hungry and was on my way to the cafeteria when they announced over the loudspeaker that they were serving dinner for parents in the Ronald McDonald Lounge. I ate like a pig...lol.

Its been a long day, and I guess I won't be going to yoga or the gym today..bah.:side:

I forgot to mention that the new hemonc wants to do a bone marrow on him, sometime soon. He was perplexed that Tim had never had one, but I explained that the hemonc didn't feel it was necessary (I had to explain to him?). Anyway, he said it would be good to check on the Reticulum since he's been on Nplate for a little while, so in that case I can see doing it. He also was perplexed as to why we did not want a splenectomy. I said, "Well, considering it didn't work for his grand ma or aunt, I'm not confident it will outweigh the risks of surgery and longterm immune compromise."

Donna...I am sorry to hear that Tim has dropped back down! I was hoping for some kind of miracle where he would stay up for much, much longer! I am curious, how long before he started Nplate, did he have his Rituximab treatment? It seems like it was a year prior or something like that. I hope the new hematologist will not have trouble getting him started back on Nplate. I think it is a good idea to go ahead and have a bmb just for the peace of mind. Just remember that some reticulin is normal in ITP patients. The pathologist should be able to tell if it is more than what a normal ITP patient has. For Caitlin, we were lucky that a bmb was done before she started Nplate so they were able to go back and compare notes. But before the pathologist even did that, he suspected that she had more than the average ITP patient and after comparing the slides, he was right. It will always be at the back of my mind that there is some possibility that her bone marrow is still forming more reticulin, but I feel better this time around, because Caitlin has been on the minimum dose. Last time, she was on the maximum dose and more than half of that time was on 4 to 6 mcg/kg.

Glad to hear that you are all settled in. Glad you were away from the tornado in Joplin! Keep us updated on Tim's progress and hopefully, getting him back on Nplate will not have too many obstacles!

Tim's history, in short:):
Presented at age 11 and after one IVIg treatment, remission for about 18 months. Relapsed and had IVIg 3 times. Every three weeks he bottomed out again, so had Winrho, and another remission for 13 months. Relapsed while with dad in Maryland. They tried IVIg with no positive effects, then tried WinRho, with little effect, but then gained partial remission (counts about 60k) for about nine months, then bottomed out in September 09, sudden low counts and first major bleeding incident (intestinal). By then he was refractory to IVIg, steroids, and WinRho. Hemonc tried anyway to get counts up somewhat but there was no response and he reacted severely to WinRho. Tried promacta, with no response.
In about January 10 he had four rounds of Rituxan...no response. Finally in March they began Nplate and he responded at first slowly and requiring 5mc/kilo (he's about 76 kilos). Eventually he only required 1mc/kilo and sometimes went two weeks without a dose and kept mostly normal counts (once dipped to 82k).
Recently, with our move he missed his dose for two weeks and dropped to 7k as of yesterday. IVIg last night and his counts are at 10k today. It may get a little higher for a few days, but we are just buying time and a few platelets until hopefully Wed when his Nplate comes.

Last night was a little rough. After three tries they got an IV in, but after administering his pre meds (solumedrol, benadryl and tylenol) the vein turned red and streaked up his arm about 10 inches and you could see where the vein split into two (two streaks). The vein still flushed at first, but they said they needed to do a new iv. Four tires later (7 in all) they got a vein and began the IVIg. They checked the other IV just in case and it stopped flushing and had hardened all the way up! The streak disappeared pretty quickly, but I was worried about an infection/cellulitis. Thankfully I think we avoided that.

HE finishes his IVIg today and goes home soon. How is Caitlin doing? Ali, how is Dougi. Sorry about Danica, hope the surgery goes well and it works for her. We got the splenectomy talk again today. They wanted to know why we didn't want it. Hope everyone is doing well, or at least maintaining.

I hope the ivig last for him until he gets his nplate. I dont post very often but I do read all of your posts all the time. I too am sitting here hoping my daughters ivig hangs in there at least until tomorrow. She is getting a bone marrow biopsy before they would start nplate or steroids. She has never had ivig and in one week her platelets went sky high to 406,000 but I dont think they are close to that now a week later. Its been two weeks since she had it and she is showing a couple petechia from bumping and a couple bruises. But then again, my platelets are normal and I have a huge blotch of petechia on my legs from scratching a sunburn. Does his nplate come in tomorrow? How long does it take to start working? Have they tried the dexamethasone pulses? I have heard some good things about getting remmissions from it. My daughters doctors are talking about nplate. She usually stays i teh 50's and recently 60's but dropped with a viral infection. so here came the ivig. They want to give her a break from itp because even though she sits in a safe number she is so tired when her platelets fluctuate. Just a poor quality. I would like to try prednisone for a possible remission. She took it once before at another doctor but they apparantly didnt do the taper long or slow enough but she had not 1 side effect. : ) so, its prednisone first, dexamethasone pulses and then nplate is the hematologists plan. I want to save nplate for a time if she really needs it since it seems to be wonderful. Emma is 5 and this started 2 years ago. 1 dose of winrho adn normal counts for a year and then a slow drop for the last year but tapered at 50. It's tireing and stressful and I wish everyone lots of platelets.

Hi Donna

How is your new home? Hope it is all you had hoped for.

I am really disappointed to hear that Tim is back down. I had really hoped that he might stay at a safe if not normal level. Heyho - at least you have been there before though.

Dougie hasn't had a test for a while, but he's got enough symptoms to convince me that he's somewhere in the teens or twenties. He seems to get less symptoms as time goes on, but spots on his legs are a giveaway for him. He is fine, although he is a little bit annoyed at the no contact sports thing. Although he can't do some sports in PE, he ignores this instruction in other respects. Judging from the mud on his trousers every day I am pretty sure he is still joining in playground football at break - he must think I was born yesterday! Hopefully, we are going to get him referred back to the children's hospital to have another consultation with the bloke there (its been two years and I am getting well bored with ITP!)

Hope that the IVIG and N-plate work quickly for Tim, Ali