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!

Going on 18 months with ITP

More
4 years 8 months ago #67185 by dadof33
Going on 18 months with ITP was created by dadof33
Hi all.
Last March my son was diagnosed with ITP. He was two and a half at the time.
He had bruises and petechiae and his count was 1,000. IVIG was administered. The specialists all said it would go away. It hasn't. The first couple months we would treat whenever he dropped below ten. Alternating steroids and IVIG. The treatments never kept his number above 20K for more than a week or two. Then he stopped responding to steroids. Without IVIG his number hovered around 20K-30K, then we had to move to Canada, that was a year ago... since we have been in Canada his number has been between 5K-10K never going above that. We would always treat when we would see doctor, but the IVIG side effects got worse and worse for him and the numbers would only go up for a few days. We stopped treating. He doesn't get blood blisters in his mouth, nor nose bleeds, nor body aches. But he always has bruising and petechiae. This week his bruises seem to be a tad bit fainter, and though the ones he has are fading slowly, the petechiae is not as severe as usual. I can't get my hopes up, I think it is probably just best to begin the process of acceptance that my son will have this condition for life. I can't seem to find any testimonials here of children who have had it for this long and gone into remission. My son is happy, he doesn't complain of aches and he says his bruises don't hurt. I feel like a bad father sometimes; not pumping him full of experimental drugs, but I am too afraid that the cure will be worse than the disease. I know his count is below 5 right now and it has been for some time, my wife and I live on eggshells worried about every corner he could bump into, every step he could slip on. I really wish some miracle would just make this go away. I know I am rambling, but it has been such a long 18 months, if anyone here has had any similar experience to ours, I would love to talk with you.

Thanks for reading,
Dan

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

More
4 years 8 months ago #67187 by CindyL
Replied by CindyL on topic Going on 18 months with ITP
Hi, Dan, if you move this down to the children's section, you may get more answers.
A friend of mine's daughter had low platelets when she was younger. She out grew it.
The following user(s) said Thank You: dadof33

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

  • Lman
  • Offline
  • We cannot change the cards we are dealt, just how we play the hand.
More
4 years 8 months ago #67190 by Lman
Replied by Lman on topic Going on 18 months with ITP
Hey Dan !
Like your son, I was diagnosed on March 2018, but I wasn't 2, I was 20. I know how hard it is ... but why do you think it would be like this for his entire life? Im still receiving treatment for my condition, but your boy, hopefully is able to live treatment free! it's realy a big deal! I would probably stop treatment if I was around 10k. And, chances are high that he (even us) will fully or partially recover within years ...
The following user(s) said Thank You: dadof33

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

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
More
4 years 8 months ago - 4 years 8 months ago #67193 by Hal9000
Replied by Hal9000 on topic Going on 18 months with ITP
Dan, yes 18 months is a long time. Has the doctor mentioned Promacta (or Nplate)? Either of these can buy time and give one's immune system enough time for it to figure out platelets are not foreign - and thus achieve remission.
The following user(s) said Thank You: dadof33

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

More
4 years 8 months ago #67194 by dadof33
Replied by dadof33 on topic Going on 18 months with ITP
Ugh, thought I had posted in the children's section. I will repost there.

Thanks

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

More
4 years 8 months ago #67195 by dadof33
Replied by dadof33 on topic Going on 18 months with ITP
Thanks to everyone who responded. Just feels nice to talk about it with people who at least know a little about the disease. To answer the questions: I really don't know why I think he wil have it forever, but it feels like it will be easier to cope with it if I don't sit in anticipation of his remission. Also, the dr's have said that it is severe and chronic, and they seem to be insinuating that it will be lifelong.
Yes, our NY doctor brought up Nplate and the Dr. in Canada brought up a drug, forget the name now. My wife and I are hesitant to start pumping pills into our boy, pills he may need to be on the rest of his life. I have done some reading, and it seems that with most these drugs, once you stop the numbers drop right away again. So it's not a cure, and there are side effects. We are wary, or maybe we are stubborn. I am awfully confused.

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

More
4 years 8 months ago #67200 by b2h
Replied by b2h on topic Going on 18 months with ITP
Hi Dad :) I hardly know anything about childhood ITP, but I understand where you are coming from. It's so difficult to have nothing to hold onto, so thinking it's forever or that a certain date or time frame is when it should disappear sounds normal to me. All I can say is I hope your son will only have ITP for a little longer, but if it ends up he has it for the rest of his life it's okay. He can have a great life and you and your wife will become experts and it will simply be a part of your life, not a huge glaring thing that occupies every moment. It is really great that he doesn't have active wet bleeding, fatigue, pain or other symptoms...
It sounds like you are being a really good Dad and your son is lucky to be so loved. It is scary, but I trust you and your wife will do what is best.
Best ~

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

More
4 years 5 months ago #67824 by Turbo01
Replied by Turbo01 on topic Going on 18 months with ITP
Hello dadof33,
My daughter has been diagnosed with itp for 13 months now. The word chronic really took a toll on me and a week later my husband and I went to a leukemia lymphoma foundation walk, there we met a young lady in her late 20’s that had itp for 5 years and was diagnosed at 4. She told me that it went away and never came back after 5 years. Just when hope was gone for us this angel came to our lives out of nowhere. I hope that my experience brings you a little hope and relief.

May I ask, do you get ivig or any other treatment and if so at what levels. We used to get ivig when platelets would drop during viruses and now our new nyc doctor doesn’t treat. I’m torn as to what to do every time I see petechia spreading like wild fire.

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

More
4 years 4 months ago #68154 by ebcohan
Replied by ebcohan on topic Going on 18 months with ITP
Hi. I am new to this site and just read your initial post. My 7 year old was diagnosed three years ago. It has been an emotional battle for our whole family. I completely understand you. She had 4 IVIG treatments with allergic reactions and bad side effects after and her numbers only stayed high for a very short time. I also believe that this will last her lifetime because i have been burned too many times thinking it would go away. I think it is a defense mechanism. I understand not wanting to give your child any more drugs. A year and a half ago my daughter went gluten free and started on some homeopathic remedies. I was not a huge believer in this type of treatment but was at the point of desperation and would try anything. Since starting this new lifestyle her numbers have slowly risen. She is currently at 96,000! Not sure how long this will maintain, but for now it seems to be working. Let me know if you would like any more info.

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

More
2 years 10 months ago - 2 years 10 months ago #71253 by DomsmomONE
Replied by DomsmomONE on topic Going on 18 months with ITP
My son has had ITP for a long time as well. TuRns out he has hypogammaglobulinemia (low immunoglobulins) caused by a Primary Immune Deficiency Disorders called CVID. The chronic ITP is secondary problem caused by his primary immune deficiency disorder CVID. Has your child ever had his immunoglobulins checked? Even with weekly treatments of SCIG, he still has ITP, but his levels aren't critical anymore. He gets a CBC drawn every 3 or 4 wks. Good luck!

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

More
2 years 10 months ago #71261 by MelA
Replied by MelA on topic Going on 18 months with ITP
Domsmom - I'm an adult and I have hypogammaglobulinemia - my IgG level is in the treatable range but I am not being treated since I am not having recurrent infections. They mainly are concerned about IgG since it fights infections, can't recall my other Ig levels. I was diagnosed ITP in 1989 and hypogammaglobulinemia many years later.

Glad the IgG is helping your son - is that SC for subcutaneous, giving under the skin? Hope he continues to do well!

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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

Moderators: jaycharness