On the subject of flu vaccine: The year before my daughter developed ITP, the girls and I had the flu mist vaccine, because there was a shortage of the injected vaccine, and the medical community were reserving the injectables for those who could not have the mist. The mist is a live virus, as I understand it, and more likely to cause certain immune responses. Once ITP was diagnosed, our hematologist still wanted her to have the vaccine, but urged us to get the shot, not the nasal mist, because a rev in her immune response would tank her platelets. He also urged the rest of the family to have the shot (so she wouldn't have flu virus in her home to rev up her immune system) and not the mist (because those who have the mist may theoretically "shed" virus for a few days, which would expose her and rev up her system). Any time my daughter was fighting a virus, her counts tanked.
On the subject of other tests: IVIG is a treatment, but is also somewhat diagnostic, as our hematologists explained. If the platelet count responds to IVIG, it is quite unlikely that any other condition is involved. While the IVIG is in the system, the immune system stops attacking the platelets. If your daughter had other reasons for a low platelet count, this likely would not happen. Our daughter had a great response to IVIG, but, like everyone else, her response was temporary. It seemed to me, however, that once the tanking of platelets stopped, and the count rose, her decreases were less dramatic, and she leveled off at a safer count for a prolonged period. Once she was labeled "chronic," which at that time was six months but I understand now is a year, she did undergo a bone marrow assessment, including a test which took some weeks to report, and which assessed for "precancers." Everything turned out fine.
How to manage chronic ITP: It just becomes a part of your life and your routine. My husband was a nurse, and about seven months after our daughter's diagnosis, he was able to take a weekend shift, which meant one of us was always available. You may have to call on family or a close friend now and then, or you may have to hire some help. Yes, it disrupted my work tremendously until my husband's work hours changed. The stress will either lessen or become manageable over time, but I know it is tremendous right now. On the bright side, your child is of an age that makes it likely her ITP will resolve. Our child was almost 13, which made it likely hers would be permanent. She entered remission at about the 1.5 year mark, and has had good counts ever since. There is hope for this with your child as well, and perhaps sooner.
IVIG can have terrible side effects, and we deemed it a rescue treatment best reserved for a truly dangerous count or a prolonged bleeding episode. When our daughter had low but not dangerous counts, we did "watch and wait," and restricted her activities accordingly. At 30 and higher, she could play mild tennis, but not go for the corners. Teachers, coaches, and peers were informed of her issues and restrictions. (We were blessed with a small, loving, private school.) When she had to have IVIG, the first episode left her with such a headache she returned to the hospital to rule out a head bleed. After that, we insisted on not only premedicating but keeping up the benadryl and tylenol throughout the infusion, continued benadryl and tylenol for a day after the infusion, vigorously hydrated, and she had a shot of decadron/solumedrol at discharge from the hospital on the second occasion, because she had mild headache developing. She never had severe side effects in her second or third infusion. We were blessed that she has not required a fourth.
Steroids have their place but have terrible side effects. Some here have found decadron pulse therapy to help. With our daughter, the crash after the treatment took her count lower and so rapidly that she developed a nonstop nosebleed necessitating her third IVIG treatment (fourth hospitalization). Short-term prednisone, however, got her count up enough to have teeth extracted for braces. (Stubborn baby teeth wouldn't let go. Seven had to be extracted. This was done by a pediatric dentist under anesthesia in a hospital OR with our hematologist right down the hall. Special dressings were used to stop bleeding.) Prednisone tastes terrible, and our daughter retched up her first dose. The pharmacist replaced the pills and urged me to dunk the pill in a spoonful of applesauce, not to hide it, but to mask the taste. She knew what I was doing, and why. She went along, and it worked.
You don't need the best doctors in the field, but if you want to read their articles, they are reassuring. You do need a hematologist if you don't have one and if you can reasonably get to one. Ours were at a teaching hospital at a medical school, and they were fabulous. They were familiar enough with ITP that they didn't overreact, and were able to give good advice and reassurance. (Plenty of common sense coping advice came from right here at the PDSA, too.)
Most folks haven't found diet to be a cure, nor a problem. My daughter loves yogurt, blueberries, and lots of other foods that are said to help or hurt counts, and her counts never seemed to be affected by diet. (Her counts did seem to tank when fighting illness and after excessive sun exposure.)
Medications: PeptoBismol is another no-no for ITP patients. It contains salicylates, similar to aspirin.
We dealt with fears the best we could. EMLA cream helps some kids have less painful IV insertions. Some kids prefer finger sticks (like mine) and others venipuncture for their CBC draws. Some prefer the "butterfly" needle. The children's hospital we used made it as comfy as possible for kids and moms. There was a window seat that made up into a parent's bed in our room. I kept a suitcase with pajamas for both of us, a change of clothes, and some essentials, as well as puzzle books and such, with a couple of pillows and blankets in the car. We were ready if a CBC showed she needed to go straight to the hospital. I made our "nest" as well as possible when we settled in, and it was bearable.
Good luck dealing with this. Come here often, and you will find tips, helps, and loving listeners.
Norma
