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!

This is so frustrating!!!!

More
15 years 6 months ago #2643 by xray001
This is so frustrating!!!! was created by xray001
It is day 8 since the last ivig, and Danica's count was 25. The only days that Ped OP could schedule for ivig were April 1 and April 8. She will be really low and full of petechiae by the 8th!!!

Dr. Devaraj told the nurse that Danica is to have ivig tomorrow, and that it does not matter what her count is when she starts the next pulse of decadron (Due April 12)

He also told the nurse that he thought that this could take a few months for the decadron to do its job. Eventually, the ivig would be decreased and spaced farther apart and that the decadron would need to be continued for some time.

that is NOT what he told us the day we started the decadron. He said that it could take up to THREE WEEKS to work, and that he would only do THREE MONTHS of the decadron.

I will talk to the nurse tomorrow, and see if we can't get this straightened out.

I have been following your posts on your children. I do hope everyone is getting along okay.

Michelle

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
More
15 years 6 months ago #2657 by alisonp
Replied by alisonp on topic Re:This is so frustrating!!!!
Michelle,

Are you sure that Decadron can work over the course of a few months like that? From what I have read about it, it either works or it doesn't - bit like prednisolone. If Danica dropped mega fast the first time, that would continue to happen. I don't know though - my only info comes from google and my uncle apparently took it for something else.

Are you allowed to ask for second opinions in Canada?

Good luck with it all, Ali
More
15 years 6 months ago #2658 by juliannesmom
Replied by juliannesmom on topic Re:This is so frustrating!!!!
There have been some kids here who did the five day decadron pulses once a month for several months, and found it worked for them. At least one kid I recall eventually stabilized with good safe counts after a few months, and stopped the decadron and held well. We were encouraged enough by that to try it, and by the fifth day, the count was up from the teens to the 50s. Within a couple days after that, however, our teen had a nonstop nosebleed and ended up in the hospital having IVIG. Seems her drop (to the same level in the teens as before) was so precipitous she didn't tolerate it. For us, decadron didn't work out, but I think it's worth a try.
Norma
More
15 years 6 months ago #2668 by tacmom
Replied by tacmom on topic Re:This is so frustrating!!!!
I also remember reading about how it works for some kids and they've been able to get off and sustain good counts, but not normal counts. Her dr is probably encouraged by that one jump that she had and may be thinking that the 2nd round may bring better counts for her. But, you are the parent...you should be able to have some control over what treatments Danica has. (Or do you? Not sure how the Canadian system works.) How does Danica feel about taking another round of Decadron?

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...
More
15 years 6 months ago #2681 by lucidawn
Replied by lucidawn on topic Re:This is so frustrating!!!!
Michelle,
So sorry about your frustration. I hope that Danica responds to the dec. The confusion might be in how they are interpreting and conveying data. I've found some doctors will give you only the best case scenerio, and others only the worst, while what they really should do is give you all the data. Its possible that the drug works that way for some and not for others. I would look it up on the manufacturer website. They should have the right info. Ask a pharmacist for information, they are a great resource. Hang in there!

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...
More
15 years 6 months ago #2696 by xray001
Replied by xray001 on topic Re:This is so frustrating!!!!
Well, here is the catch - decadron is not labelled for thrombocytopenia, and the pharmacists that i have talked to do not have the experience with itp to give me any more answers that what I can find on the web.

Ali - I tend to agree with your rationale - it either works or it doesn't. Her count went up while she was ON it because it IS an immunosuppressant - it just makes sense. However, with the rapid drop that she had, I tend to think that she will continue that way. Actually, i never had much faith in the decadron to start with (just a gut feeling) because she never responded to the prednisone. I could very well be wrong.

We did get that second opinion in December - and he said the same thing. He told us that we could try the dec, and the rituximab - but said that if it was his kid, he would try the decadron first. (I myself, having the feeling that the decadron WOULD NOT work, wanted to try the Rituximab first). Our hemo also said that if it was his kid, he would not use the rituximab.

My husband wants to see a hemo in Edmonton BEFORE we entertain splenectomy. I don't think it will give us any more infomation UNLESS they proceed to explore more than just the itp (example - endocrine disorders etc). Our hemo has spoken to them on several occasions, and they seem to be in agreement, and I am satisfied with that. However, it certainly cannot hurt, and since these other hemos in Edmonton are PEDIATRIC HEMOS, AND WORK IN A PEDIATRIC HOSPITAL it certainly could be to our benefit to give it a try.

Norma, how long did the child that you know of take the decadron? How long did they have itp before trying it, and was that child as extreme as Danica in the sense that even ivig only lasts for a very short time?

Today was another milestone - IVIG #30 Hard to believe that she has had that much immunoglobulin!!!!

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
More
15 years 6 months ago #2699 by juliannesmom
Replied by juliannesmom on topic Re:This is so frustrating!!!!
Michelle,
I checked it on the old parent discussion board, and realized you posted a response to her "Liam Update" post in December 09, so you may have already corresponded with her. Her name on the old board was "Nan," mother of Liam, and maybe Sandi would be willing to email her and ask her to get in touch with you or post here. (I PM'd her and asked her to chime in here, but I'm not sure the PMs are still working, and I'm not sure she's still checking, since Liam was doing so well in December. (His success on decadron is what inspired us to try it.) Here is what she said on the old board:

Liam tried IVIG a number of times and he would raise fairly high, only to fall down to nothing within about 9 days every time. He did that 4 or 5 times. He tried Winrho with no results. He then did Prednisone for 3 months, starting high and weaning off. He stayed high from July to end of October and then crashed 10k per week til he was down to 2k. We didn't treat for about 3 weeks and then an uncontrollable slow nosebleed (3 days) forced us to go to our doctor's next plan, decadron (dexamethasone). If you would like to know more about that experience please pm me. It wasn't easy by any means but we are so glad we gave it a shot before spleenectomy. It has truly been a godsend.

Liam, 12 years old and always my hero.
Diagnosed 5/31/06
Dexamthasone pulses keep normal or near normal levels since 1/07.
Last count 4/4/09 - 123k
on 4 milligrams per month, no side effects


I hope you can reach her and get more details.

Norma
More
15 years 6 months ago #2775 by xray001
Replied by xray001 on topic Re:This is so frustrating!!!!
Oh Norma - thanks. I just posted a reply on Liam's mom's thread, not realizing that she was the one you were talking about. How convenient!!!

Michelle

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
Moderators: jaycharness