Be a part of the ITP community and stay informed.
Login to your account or REGISTER.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
Forgot your password? Forgot your username? Create an account
Forum
Parents of Children with ITP
General Discussion for Parents
Chronic itp and never ill, anyone else?
  • Page:
  • 1

TOPIC:

Chronic itp and never ill, anyone else? 5 years 10 months ago #58874

  • Owensmom
  • Offline
  • My son was diagnosed with ITP in 2013 at the age of 6. He's had win-rho, ivig, rituximab, steroids, promacta, and 6-MP. We are currently on a plant-based diet which we started September 2016. We're trying to avoid a spleenectomy.
  • Posts: 13
  • Thank you received: 3
My son was diagnosed at age 6. I always thought it was funny that they believed my son's ITP could be brought on by a virus. He was never sick. Very few colds, never strep throat, etc. He had fluid in his ears for almost a year when he was 4 and never had an ear infection....ever. It never dawned on me that this was kind of odd until they asked me when he was last sick. I couldn't even remember. Don't get me wrong, he has had the flu a few times and a mild cold on rare occasion. Maybe I'm reading too much into this, but I just want to fix this ITP puzzle. Anyone else have a "superhuman" immune system?

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

Chronic itp and never ill, anyone else? 5 years 10 months ago #58893

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2371
I actually think your son has a fairly healthy immune system if he is rarely sick. Do you stick to healthy foods? We have a pretty sick society and we've all begun to think it is normal. It's not. What your son is experiencing is normal (other than the ITP). Vaccines can also trigger ITP, as well as some medications.

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

Chronic itp and never ill, anyone else? 5 years 10 months ago #59206

  • victoriaandroman@yahoo.com
  • Offline
  • Posts: 6
  • Thank you received: 0
Hi, my son is nearing his 1 year mark....was first diagnosed in June 2016. He is usu 55-86 and has not missed one day of school this year. His classroom had flu, strep and scarlet fever. He even had friends with stomach bugs who had coughed on him etc. He doesnt get sick since the ITP started. I told the hematologist that I thought his immune system was in overdrive killing everything in site, including platelets. She didn't quite agree. She did tell me that if he got sick it might be a good thing as his immune system would be directed at fighting a virus and leave his platelets alone....a sort of recalibration I guess. I am confused as ever. I posted a separate link....I think our case may be linked to an inhaled steroid...completely lost and frustrated!!

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

Chronic itp and never ill, anyone else? 5 years 10 months ago #59211

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2371
ITP doesn't really cause the immune system to be in overdrive. One woman here once described it as a 'misfiring' immune system and that is more accurate. If your son isn't getting sick, I'd say he has a pretty healthy immune system, other than the platelets.

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

Chronic itp and never ill, anyone else? 5 years 9 months ago #59284

  • Owensmom
  • Offline
  • My son was diagnosed with ITP in 2013 at the age of 6. He's had win-rho, ivig, rituximab, steroids, promacta, and 6-MP. We are currently on a plant-based diet which we started September 2016. We're trying to avoid a spleenectomy.
  • Posts: 13
  • Thank you received: 3
I've gone over it a hundred times in my head on possible causes. Funny you mention it about an inhaled steroid. I'm not sure how similar this is, but I had found out that an older neighborhood boy had let my then 6-year-old inhale his smokeless cigarette. This happened 7-10 days prior to the first symptons appearing. I suppose at this point the original cause doesn't matter, but I just feel like it would give me some kind of closure to know.

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

Chronic itp and never ill, anyone else? 5 years 9 months ago #59285

  • Owensmom
  • Offline
  • My son was diagnosed with ITP in 2013 at the age of 6. He's had win-rho, ivig, rituximab, steroids, promacta, and 6-MP. We are currently on a plant-based diet which we started September 2016. We're trying to avoid a spleenectomy.
  • Posts: 13
  • Thank you received: 3
I meant to add, I also asked My doctor the same thing. I thought that maybe Owen's immune system was in overdrive as well. I got the same response. It is frustrating. You want to fix them but you don't know how. I will tell you that we've had success on a whole food plant based diet. It is not an easy lifestyle to adjust to and it takes awhile to work, but may be worth it if you can't achieve remission. I wish you the best.

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

Chronic itp and never ill, anyone else? 5 years 7 months ago #59962

  • CindyAnn
  • Offline
  • Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17
  • Posts: 227
  • Thank you received: 39
I'm not a child but I have been diagnosed with ITP almost 10 years - I have not had even as much as a cold in at least 25 yrs. I do have several allergies. I like to think my immune system is in overdrive - but my Hemo just says my immune system is Hyper-vigilant :P

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

Chronic itp and never ill, anyone else? 5 years 7 months ago #59963

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2371
The immune system is a very large, complex entity with many separate components. Antiplatelet antibodies are only a small part of what is going on with the immune system.....the rest of it is usually intact and functioning well. Think of it like the immune system is a Mall. If one store would shut down, the rest of the Mall can still function normally and remain profitable. ITP doesn't affect the entire immune system; it just has one part of it that malfunctions.

Owensmom, I truly believe that nutrition plays a big part in overall health, including immune system function. There was a time I would have laughed at that, but my thinking has changed. I have watched some videos on Youtube by Dr. Suzanne Humphries and her explanations are incredible.

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

Chronic itp and never ill, anyone else? 5 years 6 months ago #60265

  • Shari
  • Offline
  • Posts: 3
  • Thank you received: 0
My daughter, aged 10, was diagnosed a year ago October. We do the watchful waiting after one round of IVig which only raised her platelets to 27. She sits around 2 to 10 usually (with a freak count at 30 about a month ago). We don't know yet if it is chronic...hoping not, but I am worried. Which is why I joined this group. But in answer to your question...she has not been sick since September of last year and that was only a fever about 3 weeks before I noticed a HUGE bruise! I don't know if it means anything or not, but she goes for a blood draw tomorrow and I am asking about it.

Please Log in or Create an account to join the conversation.
  • Page:
  • 1
Moderators: jaycharness
Forum
Parents of Children with ITP
General Discussion for Parents
Chronic itp and never ill, anyone else?

Charity NavigatorGuideStar Seal NORD Member BadgeTHSNA logo