What causes ITP? I think I found something.

Hi everyone, I am new to this board, but not new to ITP. My daughter was diagnosed back in may of 2009. She had a fever the morning of diagnosis. When I received her results, her liver enzymes were upa nd white cells were down. her platelets were at 8. They went down to 5 in just the next few hours. She was given one dose of winrho and never had a problem again until this MAY again. So, heres where it begins. This might sound crazy but, last may three days before she was diagnosed I took her to disneyland. I put some sunscreen on her and she got aheadache, stomachache, and vomited later that evening. Then the next to days, only fever with no other symptoms. Well, I never used the sunscreen again because I just had a really wierd feeling about it. She didnt have any immunizations, or illnesses 1-3 weeks before her diagnosis. Very strange. So, a couple weeks ago, exactly 1 year later, I used the sunscreen again. And again, her platelets have fallen. So far not as far as before. she is still in the 90's as of monday morning. So, I looked up this sunscreen and got some interesting info on the ingredients. Some of them cause liver problems. Some cause immune reactions, and some cause the dna thing that this website talks about. I just thought it was strange that exactly 1 year later, with the sunscreen she has had a reoccurence. I guess I'm looking for answers, and really hoping I found one. Her ITP diagnosis wasnt consistent with the norm of diagnosis so I know it has to be something. Anywho, if anyone has had an experience like this please let me know, and please be careful with some sunscreens, I never knew they had such aweful chemicals in them, and they are actually absorbed by the skin. I really feel like this may have been a reaction to the sunscreen since her liver enzymes were up before diagnosis and that part of her diagnosis was just ignored. I dont know though. Just hoping!!! Wishing everyone lots and lots of platelets!!!!

This has happened to me!

I was thinking it could not be until I read about nano-particals which are now rife in sunscreen. They are in other products, but for some reason, they are especially used in sunscreen.

I was stable and then used sunscreen and they went down- on two occasions.

I now use Nutrogena because I think they do not use nano's.

It may not have been a link, but it sure woke me up.

There are lots of things that can cause ITP, u just don't know, so that's possible. I think mine originally started after I got an infection from a hospital stay. I was having surgery on my legs and happened to catch something from one of the other kids in my ward. I dunno what might of set it off again in Nov last year this time or even if it was going in longer then that. We only knew they were low because of a blood test

I'd think that a count of 90 doesn't really show a reocurrence. And WinRho can last about a year so it may be a natural falling of the count.

Also it's quite likely the first time that your child had a stomach bug and bugs like that are known to make the count fall.

What are nano particles that are in sunscreen?

I think an allergic reaction could be the trigger for some people, or a toxicity reaction. One person here thinks it might have been a tetanus shot. Another person thinks it might have been mold in the house. I think my SLE started after I had an armful of skinpricks for allergy testing. There is a cluster of MS in New Jersey, maybe the toxic waste the houses are built on?
Erica

I have low pancreatic enzyme but my liver counts have been high before too. I don't know enough about sunscreen to have an opinion about it though.

I hope I found the reason. Her itp was like the acute kind. Just came and went with one dose of winrho. And then boom!!!! May again with sunscreen. Her hemotologist said dont use the sunscreen again. I took her an article on it. The chemicals actually are absorbed by the skin and take some time to leave the body. Her platelets went from 93 on monday to 114 today. It was coppertone kids that I think caused it. What kind did you use?

Nanoparticles are very small created particles they are using now:

en.wikipedia.org/wiki/Nanoparticle#Safety

It is too complicated for me to relate, but if you research it you will see.

Because they are so small they can get through the skin. They have NO idea how it will all pan out in the human race.

The person who wrote about the mold and toxins and everything- so true. We can stay away from mold and get nano'ed. Or stay free of both and get hit with GMO food. We are living in a toxic world.

It's a simple thing to change sunscreen brands, especially with all the hype in the news for the last few days over cancer, etc from sunscreen ingredients. So by all means, I'd stop using it. It's a possible allergic trigger for your daughter and I know that I feel better when I do all I can to reduce the allergen load.

It's also quite possible that it's coinsidental as Ann says. Non-ITP people often have shifts of as much as 30K in a single day but since they live in a much higher range no one gets concerned about it. The changes 22K sounds dramatic if you've down below 30K, but a change from 90 to 112 is something that my hemo would not even monitor again for 6 months unless I had lots of unexplained bruising or nose bleeds I couldn't easily stop in under 20 minutes.

The elevated liver enzymes are really common if the spleen is doing a lot of work. I'd be more likely to blame that than a few applications of a sunscreen. That's how they ultimately diagnosed my sisters enlarged spleen and a different blood disorder (she does not have ITP).

It does sound like her orginal bout was acute. According to my hemo, the manufactures recommendation for Winrho dosing is every 4 weeks. Most of us go by the symptoms and a count threshold rather than line the drug companies pocket. For me, I typically make it 6-8 weeks between infusions.

That's what I thought, that winrho is good for about 28 days in acute itpa nd can actually last about 90 days in someone with chronic itp. I didnt know that platelets fluctuate so often in non-itp people. Maybe thats what happened. My daughter has always sat around 160 or so long before the itp. Its jsut wierd that agin after 3 days of the initial use of sunscreen that it happened again. And the first time it was on her all day with no swimming and then due to her fever the following days I didnt think about the sunscreen on her and didnt give her a bath because I didnt want to mess with her fever. The day I gave her a bath her fever broke. The chemicals in it actually accumulate in your blood with exposure. This last time I used it, she only had it on for about 2 hours, if that before a bath. And this drop was much less than the first. It's very strange. But, her platelets are now up to 114 as of yesterday. I'm happy with that number. Do you have winrho every 6 weeks?

eklein wrote:

One person here thinks it might have been a tetanus shot.

I don't think it was a tetanus shot, I know it was a tetanus shot!

Do a google search on nano particles in sunscreen you'll come up with lots of articles. Also nano particles in cosmetics.

Surely when the body makes the antibodies the vaccine is designed to get the body to make, it encourages the body to make more antibodies against the platelets. It's a rather different thing than thinking that some other chemical is the trigger. With the vaccine, the body is doing what it's supposed to do but getting over enthusiastic, with other chemicals it's not supposed to do anything at all.

I've been treating with it for a little over a year with winrho. Depending on where my counts are at I get a CBC weekly or every 2 weeks. The doc is more conservative than me, he likes to treat when I drop under 50, I'd be okay at 30. I humor him, since they have to order the drug into his office and I don't shedule the infusion until 7-10 days after the count met his threshold. I typically get 6 to 8 weeks before I schedule again, although this go around I'm on week 9.

A year!!!! My goodness.Have you tried the diets for itp? I guess anything sugar free or diet has aspartame in it which lowers platelets. It's such a wierd illness. There has to be something that causes it and it sounds different for everyone, but then again all of us are different. Wishing you plenty of platelets. You seem as if you are handling this very well..

Pink, I've had ITP over 17 years, I've only had to treat in the last year. There is no "diet" for ITP or we'd all be on it. I have tried many over the years and there are some that are better than others for overall well being and many people see good things from going to a more natural "raw" food protocol. I think that in years to come we'll find that there are more than one cause out there for ITP, and its likely more than one disease or sub-type. As Ann says many of the autoimmunes conditions (possibly with some predisposition based on our family genetics) have some trigger, be it a vaccine, a virus, or an environmental exposure that has confused our bodies into producing autoanitbodies that attach to the bodies "self" cells. In these cases the drugs that focus on the interupting the distruction will work. The latest research has developed the TPO drugs that stimulate the bone marrow to produce more platelets.

I always wondered about the trigger of my ITP. I think I figured it out. A month before I was diagnosed I was put on major doses of penicillin for strep and then after the strep, a severe sinus infection, also treated with high doses of penicillin. I was basically on high doses of antibiotics for over a month. Then came the awful nosebleed. My hema thought that maybe my ITP was medication induced and that it would eventually subside. But, alas, it didn't. I still from time to time like to wish that it was all because of those antibiotics and that the ITP won't come back. I can dream can't I?

Natalie

Natalie, you may indeed have found what triggered your ITP. Different things must cause it in different people.

Even though my hema said it was unlikely, I truly believe MY trigger for ITP was NSAIDs I was taking for arthritis. My orthopedist had me experimenting with several prescription NSAIDs, and (after unsuccessful trials with Clinoril and Indocin), I'd settled happily on Voltaren. All of these NSAIDs seemed to make me bruise, I noticed. Then the big nosebleed and the ITP diagnosis. I know that most people don't get ITP from NSAIDs, but I think they did something to me that made my organs ravenous for my platelets.

Karen R