Here we go again!

So, aside from the few petekia I found on Max's back and stomach yesterday, I was feeling very hopeful going into our follow up appointment with Dr. Berstein today. My false hopes were crushed when his platelet count came back at 4. It has only been just over 3 weeks from his treatment and the doctor hoped it would at least last 3 weeks, but with a count at 4 it is likely that it only lasted 2 1/2 weeks tops. It is good, however, that he did respond at all to the IVIG therapy. We were also waiting for the results of the more extensive blood work to come back. What we now know is that he does not have any other bruising condition or disorder. (Bad news: his ITP condition/ is chronic, not acute.) What he does have is a bacteria called H. Pylori. At least that is what the blood test suggest, an infection caused by H Pylori. It won't be absolutely confirmed until they get a stool sample and test it. Fun! Max gets to poop in a cup and I get to help him! Yeah! This bacteria affects the stomach and duodenum. Symptoms include indigestion and diarrhea, both of which hasn't complained of.

It is possible that there is a connection with the H Pylori and his ITP. Max will take 2 weeks of antibiotics to kill the bacteria. We won't know for a month or two if it is gone and if it is affecting his platelet count. Until then we have to do another "bandaid" treatment so Max isn't at such high risk of injury. #1 IVIG therapy again. #2 Another IV therapy (can't remember the name) that is much more simple, only takes 5 minutes to administer. Both 1 & 2 have side effects of upset stomach and headaches, done them both and came out okay. #3 take an oral steroid that would suppress the immune system, thus not fighting off the platelets. It too has side effects of severe hunger, irritability, insomnia, weight gain and possible diabetes. I am opting for the 1st or 2nd, depending on our out of pocket cost. Just the bag of IVIG is $4500! I can't wait to get that bill! These options are only a temporary fix. Until we know if fixing the H Pylori will fix the ITP, we have to keep him as healthy as possible with low risk of injury. This means Max is officially not going back to school and I will start home schooling him as soon as I can get the supplies I need. Kind of sad about that, but also relieved that the decision has been made.

I am trying to put on a strong face in the midst of all of this, and try to stay grateful that it isn't something worse. It makes me so sad to think that maybe Max's life won't be as great as it could have been. And poor kid has to be stuck with me all day, everyday. Thank you all again for your concern and your support. Max is so lucky to have such great family and friends to help him through all this. Thank you, thank you, thank you!