Watch and Wait approach and low counts

I recently found a diary with all of my son's counts for 2011 in it. I thought that it might be useful to give parents who are new to the watch and wait approach an idea of how it can still work with very low counts. It also gives an idea of what is a natural variation in counts without treatment. I changed my approach to getting his count done slightly between the two years - last year, I used to get a count when he was particularly bruised in an attempt to slow him down, whereas this year, I stick to drs appointments. I think this might explain the lack of single digits this year. I should add that my son has few symptoms beyond bruising and petechiae, and he has a pretty normal life.

2011
Feb - 9,11
Mar - 19,29
Apr - 6,10
Jun - 11
Jul - 17
Oct - 53(affected by virus),30
Dec - 5,15,5,9

2012
Jan - 23 (other counts affected by trial use of IVIg 175,77,32)
Feb - 12
Mar - 15
Apr - 14
May - 11,17
Jun - 12
Jul - 12
Aug - 17

Hope someone finds this helpful......

Ali

I find this fabulously helpful! (as I find most everything yo upost)

We are American, as you know, in boston where the medical world is very specialized and aggressive. Nonetheless, we have somehow found a hematologist (at MGH of all places!) that will do the "wait and see' approach. Our daughter is like Dougie -- no real symptoms even when very low.

We are in single digits right now but just waiting and watching. She seems fine. Will make sure she gets lots of rest, stays out of the sun (always makes her numbers go down) and doesn't ride her bike or bounce on trampolines.

I am keeping a log too, though mine is shorter. Tahnks for sharing, Ali.

My son Arden has been on the wait and see approach for almost 5 years now. We have been through it all. It is actually now that I find it so very frustrating. For years now we have just been like ok his platelets are low and yes they have been almost normal at some points but now that he has been diagnosed for almost 5 and a half years, I want to know when is enough enough? I want them to do further testing and try to get to the bottom of the problem. I constantly tell myself that there just has to be something else wrong. WE have been through 2 different hematologists too. We just did start with a new hematologist so I am hoping things will be different this time around but his platelets are staying semi-low now. They are 79,000 right now. They were 71,000 a week ago but they were in the 100's a few months ago and at 31,000 just a month before that. There has to be something going on for them to be going up and down like that when he is not staying sick or anything.

I fear that there is no "bottom of the problem" to get to. ITP just happens and nobody really knows why.

Your son's count is good and safe. If it were me I'd monitor with annual blood tests and just live normally. If the count falls very low you will know and be able to go back more often then.

I was going to write almost exactly the same thing as Ann.

As far as I can tell, there is no "reason" for most cases of ITP - it just happens. You could drive yourself crazy looking for the answer. There isn't one.

If your son's counts are decent most of the time, maybe you should just try and live with them. They seem to be outside the danger zone. As Ann says, you would probably know if they were getting lower and then you could do something if necessary. Be happy that he is well enough to get on with life.

As to when enough is enough - when the risks of the low count outweigh the risks of the treatment. Most treatments have a lot of risks, so your son would have to have a sustained period of lower counts to tip that balance.

Good luck with the new haematologist.

Ali

I would recommend homeopathy. It has no side effects and works on helping the whole body. The only cure for ITP is if the body fixes itself. A healthy whole body can't hurt My hemo is so conservative and he told me back in the day, if I get a remedy from a homeopath, he doesn't need to ok it so it must be extremely safe. Not that is not all alternative meds from naturopaths or other. Only from a homeopath. My son had ITP for 6 years and remission for 5 and came out of remission in January of this year with a slow drop to single digits all summer (7-10K) and no bleeding. Decided to treat in Sept. and Oct. to see if we have something to use, he needs dental work and we wanted to go to Disney. No luck with IVIG and currently on prednisone and got up to 8K from 1K the last 3 weeks. No luck. His counts are good and maybe a good time to try it. Good luck.