My daughter was diagnosed with ITP at 12. Her platelets were 23 at the time. Soon after diagnosis, they fell to below 20, and our hematologist treated with IVIG. I think, in part, that was because she was a new patient and the doctors did not know how she would tolerate the low counts. Later, she treated with IVIG when the count was 3. She treated again with IVIG at a count of 15, but the treatment was due to a nonstop nosebleed. IVIG was a good "rescue" treatment for her, but the nice high counts only lasted a couple weeks, and they started trending downward within days of the treatment. It was good to know there was something if she had a bleeding emergency, but it was certainly not something we would have done lightly or just to improve counts. In our case, IVIG required hospital admission. It was expensive, even when health insurance paid all of its share. It was upsetting and unsettling to her. IVIG was, and is, not without risk, as Alison pointed out. My daughter had terrible side effects from the first IVIG treatment, with a headache so severe she was readmitted to monitor and underwent CT, in case she had a brain bleed. If her symptoms had not subsided with treatment, she would have undergone lumbar puncture to check for blood in her CSF. The symptoms improved, and she was deemed to have experienced aseptic meningitis (irritated meninges, from non-infectious cause, in this case, reaction to IVIG). For the subsequent treatments, we knew to ask for benadryl and tylenol, before, during, and after, a steroid shot after, and above-normal hydration, before, during, and after. This helped head off the aseptic meningitis.
For the most part, we did not treat. Our daughter tolerated counts in the teens fairly well. We tried decadron pulse treatment, but, after the first pulse, her count dropped precipitously to a level she previously tolerated just fine - 15. With the rapid drop came a nonstop nosebleed (lost about a pint), the one that led to her third IVIG treatment. She had prednisone to increase the counts for tooth extractions needed for braces, and the extraction was done in the OR in case of hemorrhage. She had a bone marrow aspiration done to rule out other causes of thromocytopenia. Our hematologist wanted to do this before using steroids, in case the steroids were to mask some other cause of the low platelets.
Our daughter had been an avid volleyball player, but missed a season when her counts were at their lowest. She played tennis instead, as long as the count was 30 or higher, with a rule from her doctor that she would not dive for the corners. Her PE teacher at school accommodated her, finding ways for her to participate in training or keeping stats when she could not safely play the sport the class was enjoying.
We learned that a little extra vitamin C helped with bruising, by improving vessel integrity. (A little too much can cause diarrhea, so be careful with dosing.) We used the capsules. The dry chewables are just a bit too tart for most folks. We learned pineapple juice helps with resorbing bruising. We learned methods of preventing and stopping nosebleeds. (She, like her father, is simply prone to those.) One great help in coping through all this was that we had wonderful pediatric hematologists, familiar with ITP, available at a nearby medical school hospital. They were wonderful at advising and guiding us through all this. They essentially were her primary pediatricians, as we would not treat nor vaccinate for anything without consulting them about the impact on her ITP.
A little over two years after diagnosis, our daughter experienced remission, and continues to have good counts at age 23. We don't know how remission happened, just as we don't know why ITP happened. Her counts began to trend upward toward safer levels, and eventually reached normal and stayed there. (She did, along the way, contract an odd bacterial infection while on a school trip, and required treatment with doxycycline and other meds. I often wonder if the doxy played a role in the remission, but I'll never know.) We know ITP could recur, but we all enjoy the remission. She still gets a CBC more often than most persons, just in case.
I know this was a long post, but I hope you picked up something helpful, if nothing more than knowing that your son could have a spontaneous remission, and, if he doesn't, can enjoy his teenage years. As Alison said, most patients and families can reach the point where ITP becomes a manageable "nuisance."
Norma