So all my theories with ITP have dissipated

Ever since Kayla was dx 2/09 I have had many different theories as I'm sure most of you out there have also.
My last two were that
1. She had really good counts in the summer......... Two treatments due to counts under 10k one of which while out of state end of June and mid Aug.......... now that one is gone
2. She only drops when sick, or with some sort of infection....... Totally healthy this last one

And now today I'm thinking were good to go for awhile as she just had IVIG and she seems to last (other than this last bout) awhile. But Nooooooo I look up at her as she is standing over me and see our friend the petichiae on her earlobe AGAIN!!!!!!! it's only been 2 weeks!!!!!!!!!
My poor little girl needs a break already.
Sorry all I'm venting here a bit just needed to say ergggggghhhhhhh!

I will wait to check her for more of our little friends to pop out, she isn't having any bleeding yet, and her bruising is still minimal.
Anyways thanks for listening sorry to be a downer tonight.
Thinking many platelets to all of you
Krissy

Krissy,

I feel your pain. After 6 years of dealing with the ups and downs, the only thing I am sure of is that I am not sure of anything when it comes to ITP. Just when I think I know Ayla's body (she is 9 and was diagnosed at 3), it changes. We go in and I think she is okay and she ends up being very low. I have talked to a few doctors and the only answer I can get is that one, there body is always changing so the way their body handles the condition may change as well. The second thing I was told (and I am not sure if this is true, but we have personally seen it), is that their body almost learns to deal with it better. What I mean by that is Ayla, when at her normal low level of under 5k, would be filled head to toe with bruises and petechiae. Now, she may just have a few bad bruises and we find she is that low as well. I remember at my very first PDSA conference I spoke to some families who had said the same thing about their kids body changing how it "shows" when they are low. As with all things ITP, all kids are different and all react differently. That is why this group is great for moral support, but unfortunately you cannot count on your kid reacting the same way as others might with treatments, symptoms, etc.

I completely understand your frustration.

Hang in there,

JJ

Krissy,

You're not being a downer. We all need to vent every now and then. This is a frustrating illness, condition, this ITP! I too, know exactly how you feel as my daughter Jordan was diagnosed in April 2009. I have tried my best to figure this whole thing out with different theories, foods, allergies, and what not. I don't think I'll ever have it right either. Jordan responds to standard treatments, IVIG, Pred, WinRho but they don't last and some for not very long but its never the same even when we go back to something we haven't done for awhile. I think also as Jay mentioned, their bodies learn to cope with this ITP thing and it is ever changing as they grow. All I know is that it is hard to deal with and as parents we all want to take it away for our kids. Good luck with the next test for Kayla and hang in there.

Karen
Mom to Jordan

Will someone come up with a cure already?



Jay, i noticed the same thing with my son, Last week i was ready to get a high reading because he wasnt showing any bruises or nosebleeds.... so i was guessing, maybe 100to 150k,(my wife and i have made light of the situation by guessing the count by the way Tonio looks)well, lo and behold, he was at 20k with no bleeding or major bruising. So even if i was a bit disapointed to find out a low count, on the contrary, its good to know that his body is coping with a count of 20 as we continue to taper off the preds.

WIshing many platelets to all of our kids.

SNAP!

Everytime I think I've got the pattern sorted and I've got some sort of handle on what is going on, something always changes! To a large extent, I've stopped trying to double guess ITP now, but I just can't help myself sometimes. For example, Dougie improved dramatically last autumn, so I am wondering now if it will happen again - bit like Kayla and the summer I suppose!

I've heard from a few doctors that kids bodies get better at dealing with few platelets as time goes on, so the symptoms that were once visible become less. Its definitely true of Dougie - a week on a low count, and most of the petechiae and smaller bruises disappear. Its a good thing really, but annoying if you rely on the symptoms for getting an idea about the count.

Hope no more of the little blighters appeared anyway and that you have had a weekend free of ITP drama!

Ali

She did have a bit more pop up on her neck but otherwise looks good so we've decided to hold off on having her tested. Thanks for all you support I was just feeling so bad for her the other day. She seems to deal with this craziness much better than me.
On a positive note Kayla auditioned for a play and was chosen:-) She is so excited, and it's something she can do even with a low count:-)
Thank you all for your support
Krissy

The one thing I have learned over the last 6-years is that all of our kids are incredibly resilient! I often tell groups that their condition is harder on the parents than it is the kids. I am so glad that you found an activity she enjoys that she can do regardless of the platelet counts