Remember Me     Forgot Login?   Sign up   •  Web site Help & Info

!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

Timothy new meds, admitted as well

More
14 years 5 months ago #315 by lucidawn
Timothy new meds, admitted as well was created by lucidawn
Some new developements. First of all his cbc came back at 5k. I thought it would have been lower, but I guess the difference between 5k and 1k is not really any difference. They took his bp and and it left petecheia, which was not a good sign, and he had some on his back and other places, but not much. No bleeding yet. The hemonc talked about meds, and our options. He presented the splenectomy, which I was not keen on, and the immune suppression drugs as well. I was more prone to go with those, though I thought he might not take them regularly, which the hemmonc also agreed about. He kind of seemed to lean toward splenectomy. I told him that I'd spoken with Tim's grandma yesterday at length about her history and splenectomy and that it had almost killed her. He said that with adults they don't usually try to get the counts up first, and I told him they had with her, but that regardless it did not have any effect post splenectomy. After that he did offer that option of Nplate. He hadn't offered it before because it was thought that he was taking the Promacta and it wasn't working, but since we know he was not taking the drug, he is willing to try the Nplate. So, that is what we are going to try now...Nplate. We know he will comply because he comes in the office weekly for the injection, so it is monitored. So, maybe this will work for him for a while.

Next, a bit of an amusing story. Tim's count is low, as usual, and we could likely have just gone home today, but it is going to snow and Tim plans to have a snowball fight. The Hemonc says, "Well, you can throw them but you can't get hit in the head with a snowball. We need to treat you with IVIg if you plan to play in the snow." So he was admitted for two rounds of IVIg, lol. The Hemonc walked out laughing.

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

Please Log in or Create an account to join the conversation.

  • Angel85
  • Offline
  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
More
14 years 5 months ago #321 by Angel85
Replied by Angel85 on topic Re: Timothy new meds, admitted as well
Sorry to hear they are back down to 5, I remember feeling very scared and stressed when mine were at 6. I agree that splenectomy should be the absoulte last option, luckly my doctor has said he won't even really think about considering it at this point. I think the Nplate and or mabthera is what my doctor is considering for me at the moment. I see him again on tuesday next week.

I'll Hope and pray the Nplate works for him

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #351 by alisonp
Replied by alisonp on topic Re:Timothy new meds, admitted as well
Well, I hope that it snowed after all of that!

The nplate sounds like a good idea - I really hope that it works for him, and doesn't make him tired like the other stuff did.

Lots of luck, Ali

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #352 by lucidawn
Replied by lucidawn on topic Re:Timothy new meds, admitted as well
Thanks Ali. It did snow, and as it usually does in Charlotte, it froze solid, lol. We got home this morning. We did a cbc this morning instead of last night. As I was expecting his count is much higher than usual. Are you ready for this???? He is at 72k today. Its probably where he usually peaks post his second dose, we just don't usually check the third day. Well, it would be nice if he got a partial remission, but I take it as it comes. Friday we will see what it is (I expect maybe 20k or so), and we'll find out when he starts the Nplate. I think we only have one other kid at our office on it.

How is Dougie doing? Is he any less symptomatic? Keep your chin up :silly:

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #353 by alisonp
Replied by alisonp on topic Re:Timothy new meds, admitted as well
Wow, 72 sounds so high for Tim - I hope he is out and about having fun with that count! It snowed here today as well, but it melted within a couple of hours - I want ours to freeze too!!

Dougie is completely symptom free again, and for the first time in over a fortnight, he hasn't complained about being tired. He's even gone to bed to read tonight rather than going straignt to sleep. So, I am working on the principle that his count has bounced back up, at least a bit. I hope so, cos it will make me worry less about him on his school trip! I am taking him for a blood test tomorrow before he goes, more so that the teacher knows what his count is. Fingers crossed eh.....

Ali

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #354 by alisonp
Replied by alisonp on topic Re:Timothy new meds, admitted as well
P.S. Where is Charlotte - it sounds like it should be in the South, but I am clueless about US geography. I work with a bloke who comes from NY state, so I want to impress him with my knowledge!

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #356 by lucidawn
Replied by lucidawn on topic Re:Timothy new meds, admitted as well
Ali,
Glad to hear he is symptom free. Maybe he has come up. Tim bounced around alot when he was in his partial remission. Charlotte is in North Carolina, in the region of North Carolina called The Central Peidmont. It is in the far western part of the state. We might get a little snow once a year, and usually we get freezing rain once or twice a year. Otherwise we stay fairly warmish in the winter. This has been a cold, dry winter so far. Very cold for us.

Tim went out with his sister and brother and built a snow man. He is enjoying his double digits:)

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #357 by lucidawn
Replied by lucidawn on topic Re:Timothy new meds, admitted as well
Oh, and North Carolina is in the South.

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #362 by ktonooka
Replied by ktonooka on topic Re:Timothy new meds, admitted as well
Glad to hear about the higher count for Tim! And glad he was able to have some fun in the snow like he planned.

Oh, and Donna, I just wanted to tell you how nice your words were the other day regarding riding the roller coaster of ITP. I think that its true that whenever Jordan's counts are good, I expect instant remission and am so disappointed when her counts drop again. I have a friend in remission from stage 4 breast cancer and she is always very good at counseling me. She reminds me to enjoy the good days for what they are and don't worry about what will come. Deal with that when it does come. Jordan's counts bounced around for a month without treating (good for her) but she started back on pred last Wednesday cause she has a couple of performances coming up. Oh well, it was good while it lasted.

Ali,
Good luck with Dougie's counts tomorrow. Sounds like they might be higher so maybe you can relax somewhat while he is there.

Karen
mom to Jordan

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #363 by tacmom
Replied by tacmom on topic Re:Timothy new meds, admitted as well
Glad to hear Tim's counts are up to a good number, finally! Hope they stay up for a couple of weeks! Nplate sounds like a good next plan for him. I certainly wish Caitlin was still on the drug just because it was just the best thing having her counts go up without her feeling the nasty side effects like she does with Prednisone and IVIG. Good luck there! Just remember they may not come up right away. Sometimes it takes a while then there are the fluctuating counts that are sometimes hard to deal with bec when their counts are up, we havr high hopes then we still have to deal with the lows every once in a while. However, despite how low they go, they don't usually get as much bruising or petechaie so that alone is a plus!

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

Please Log in or Create an account to join the conversation.

  • Angel85
  • Offline
  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
More
14 years 5 months ago #366 by Angel85
Replied by Angel85 on topic Re:Timothy new meds, admitted as well
Wow, 72 is an awsome count, I'm so happy for the both of you, Hope they stay up that high a little longer for him!!

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #374 by xray001
Replied by xray001 on topic Re:Timothy new meds, admitted as well
Wow - I don't think I have ever read Tim having a count like 72. You must be ecstatic!!!!

I hope things get better for Tim - he has been on a really rough ride, and really needs some great news for a long time.

Good luck to you :)

Michelle - mom to Danica - age 13
Diagnosed 8-6-09
No response with Prednisone, WinRho or Rituximab.
over 60 IVIg infusions (every two weeks)
Three Decadron pulses - count was up while on the Decadron, and then fell as soon as it was stopped. SPLENECTOMY done 7-June-2011 Last count 594

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #375 by xray001
Replied by xray001 on topic Re:Timothy new meds, admitted as well
Darn - I don't think that I really like this site as much as the old one.

The comment above was from me, Michelle (Danica's mom)

Michelle - mom to Danica - age 13
Diagnosed 8-6-09
No response with Prednisone, WinRho or Rituximab.
over 60 IVIg infusions (every two weeks)
Three Decadron pulses - count was up while on the Decadron, and then fell as soon as it was stopped. SPLENECTOMY done 7-June-2011 Last count 594

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #379 by alisonp
Replied by alisonp on topic Re:Timothy new meds, admitted as well
:) :) :)

Dougies count last week - 16
Dougie's count this week - 104

Can breathe a sigh of relief for now and enjoy a bit of worry free time!

Ali

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #383 by lucidawn
Replied by lucidawn on topic Re:Timothy new meds, admitted as well
ALI!!!! Awesome news!!! He can enjoy his trip now, huh? Maybe a partial remission is in the works? And then on to...well, we'll ride the roller coaster, eh?

Thanks everyone for the encouraging words :cheer:
Its nice to have double digits near 100...but I won't hold my breath you know. We'll just see what the week, and the next few weeks brings. I know he can enjoy at least a week of fairly normal activities, though.

Hoping everyone's immune system modulates soon and the kids can keep their platelets:).

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #392 by alisonp
Replied by alisonp on topic Re:Timothy new meds, admitted as well
:unsure: Hey Donna, I'm not making the mistake of going down the "he's cured" route again!!!! But its nice for both him and us to have a period of not worrying about it - and in this case, it will be good for his poor teacher on the school trip too....

What I don't understand is how it can go up and down just like that? He was still knackered on Friday, and still had symptoms, but they had gone by yesterday. How can it vary sooooo very much in just a few days???? Its all very annoying, but I'm not complaining!

Here's hoping that it just happens to all the other kids on this board too.

Ali

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #393 by lucidawn
Replied by lucidawn on topic Re:Timothy new meds, admitted as well
Ali,
I suppose its much the same as why they drop so fast. Tim can crash in hours...He can be at 100k today, and by tomorrow morning be at 1k. Its happened. Hopefully Dougie is on the mend.

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #394 by alisonp
Replied by alisonp on topic Re:Timothy new meds, admitted as well
Hopefully so. Actually at the moment he is driving me mad - he is bouncing round the house like he is on blue smarties or something. Whatever has been making him exhausted for the last few weeks as disappeared along with the low platelet count and been replaced by a super ninja boy - his words not mine!

Ali :)

Please Log in or Create an account to join the conversation.

  • Angel85
  • Offline
  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
More
14 years 5 months ago #398 by Angel85
Replied by Angel85 on topic Re:Timothy new meds, admitted as well
alisonp wrote:

:) :) :)

Dougies count last week - 16
Dougie's count this week - 104

Can breathe a sigh of relief for now and enjoy a bit of worry free time!

Ali


Thats fantastic news to hear Dougie's platelets are 104, very happy for you, at least he can go out and enjoy himself without either of you worrying. Lets hope that they stay up that high!! :cheer:

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #407 by liam12
Replied by liam12 on topic Re:Timothy new meds, admitted as well
its great to hear that he is doing well, my fingers are crossed for you that :woohoo: it stays that way,,,,jenny (liamsmum)

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #409 by dbishop
Replied by dbishop on topic Re:Timothy new meds, admitted as well
Wow Ali...104 that is awsome!!! I hope he has fun on his trip and try not to worry too much!! It's crazy how they can go up so fast....enjoy these high numbers!!

Deanna

Mommy to Devyn 3 years old

Please Log in or Create an account to join the conversation.

More
14 years 5 months ago #410 by dbishop
Replied by dbishop on topic Re:Timothy new meds, admitted as well
Hey Donna,

Glad to hear that Tim's count are up to 72.....people always say to me that it must be tought to have a little one with this disorder, I agree it is definitly tough but Devyn is so young and has no clue he has ITP (although i'm sure he is sick of me saying "be careful" LOL) I think it would be tougher if he was older and knew he was missing out on certian things.

Since i'v come to this forum i've seen how strong and positive you have been through this journey with Tim and his ITP, I just wanted to say Thanks....your words of adviice help so much!!

Deanna

Mommy to Devyn 3 years old

Please Log in or Create an account to join the conversation.

More
14 years 4 months ago #1244 by tim_wimber
Replied by tim_wimber on topic Re:Timothy new meds, admitted as well
Hey look!
Thats me! B)

Please Log in or Create an account to join the conversation.

More
14 years 4 months ago #1245 by lucidawn
Replied by lucidawn on topic Re:Timothy new meds, admitted as well
HEY! Get on the TEEN board!!!! :woohoo:

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

Please Log in or Create an account to join the conversation.

Moderators: jaycharness