Not a "bleeder", I'm baffled.

What does this mean?

My son's count has been at 1 for a long time. According to his doctor and the recent nurse who took his blood for further testing couldn't understand why he is not a "bleeder." If platelets help the blood to clot, then why does he clot soon afteer the needle is removed? Are they just that skilled that he doesn't bleed for a long time?

He has the signs of ITP, some bruising, lots of petechiae...low platelet counts.

Does this mean he has the antibodies that are still attacking his platelets or is his bone marrow just not doing it's job?

I'm sure we'll have to wait on the blood tests to come back to confirm, but still.

It all baffles me.

Hi,

Frequently, when one has low platelets, the platelete they do have are either "stickier" or sometimes larger. Both mean that they can still clot well after pokes. ITP *can* be an issue of production and I'm sure there is some element of that for most. For my son, that did not appear to be the case based on his bone marrow biopsy (he had plenty of megakarocytes). ITP can be a disease of both destruction by the spleen and lack of production by the bone marrow. Not always the case, but can be. Not being a "bleeder" is a VERY good thing when they are that low. I was thankful my son was not a "bleeder" when he was at zero. Had he been, we likely would have been forced into more horrific treatments then the ones we had tried already. I counted my blessings that he wasn't a bleeder. They do offer drugs that increase bone marrow production to try to force counts higher but like all drugs, they have their side effects. The drugs (promacta, Nplate, etc) can cause myelofibrosis of the bone marrow. The other issue is they have no idea what the long term effects of pushing the bone marrow to crank out platelets will do. While the first can be corrected by stopping the drug, the second is an unknown. It's a risk some people choose to take.

Hope this helps.

patti

cpo5 wrote: What does this mean?

My son's count has been at 1 for a long time. According to his doctor and the recent nurse who took his blood for further testing couldn't understand why he is not a "bleeder." If platelets help the blood to clot, then why does he clot soon afteer the needle is removed? Are they just that skilled that he doesn't bleed for a long time?

He has the signs of ITP, some bruising, lots of petechiae...low platelet counts.

Does this mean he has the antibodies that are still attacking his platelets or is his bone marrow just not doing it's job?

I'm sure we'll have to wait on the blood tests to come back to confirm, but still.

It all baffles me.

As Patti says new platelets are bigger and beefier then older platelets and as your son is killing off his platelets quickly he only has new ones. The new ones tend to do a good job at preventing bleeding which is why we with ITP don't panic when we have low counts. People with low counts with other illnesses have far more problems than we do.

ITP is a disorder of both platelet destruction and poor platelet production. Antibodies mark the platelets which are then destroyed either by white cells in the blood or in the spleen and/or liver.

Poor production works in two ways. Firstly, the megakaryocytes which form platelets in the marrow are damaged probably by antibodies, and although there appear to be a lot of them in the marrow, they don't work well and so produce few platelets.

Secondly, the level of TPO in the blood is lower than normal. TPO is the chemical that stimulates the production of more platelets. TPO is made in the liver and released in the bloodstream. Some of it binds to the platelets and the amount of TPO left over in the blood is what stimulates the body to make more platelets. In ITP the TPO binds to the platelets which are then killed off so because there isn't much TPO left over, the body thinks that there are more platelets than there are and so doesn't rush to make more.

The two new drugs, Nplate and Promacta (Revolade in Europe) are TPOs and the idea is that introducing TPO will stimulate the marrow to make more platelets. Although the long term effects aren't known, the theory is simple and would appear to be sound.

Thank you both...that certainly makes more sense. I didn't think of it as being BOTH issues, not producing sufficiently as well as the body attacking. Also did not know that the red blood cells could be stickier and "act" like platelets. Just a few more days and we'll have his blood tests results back. We did not do the bone marrow biopsy yet, but I have a feeling that will probably be in his future if his blood tests do not come back conclusive.

We've heard of both drugs and they are kind of out there for us as future options...but as Patti is aware of, we're trying the homeopathic/natural approach first. Our counts on Friday were still at 1 despite the vitamin regime...but I am still encouraged.

Another possibility:

www.ingentaconnect.com/content/apl/upho/2010/00000027/00000004/art00004

www.ncbi.nlm.nih.gov/pubmed/1583382

INTERESTING! Microparticle elevation...it's odd that docs don't point these things out.

So today one of my son's pedis called and said that his counts from Wednesday, 12/7, were at 16,000!!! Great...but the regular pediatrician said his counts were 1000, and that was on 12/9, two days later.

Time for a third opinion? We haven't done anything different in 2 days, so either his counts dropped 15,000...or someone's readings were off.

Could be both. Counts can vary wildly in just hours. I have found that the only accurate count when one is under 10K is really a manual count under microscope. Otherwise, probably doesn't matter at this point.

Just as a caution, remember that their condition can change at any time. Tim was never a bleeder, then suddenly after four years he became a bleeder, and sometimes he is not a bleeder still. Can never know really if they will bleed or not. Always be careful and watchful.

Thank you for your reply, Donna. From your stats, I see that you are one.busy.mama. We had a CBC done today as well as a total nutritional analysis. We are hoping for results on the counts in an hour or two.