Welcome to the group. I hope you find your case is one of those acute ones, that remit quickly. I am not an ITP patient, but was mom of one, and I know it's scary. My daughter, now age 25, was diagnosed shortly before her 13th birthday. She was eventually deemed chronic, but her ITP remitted about three years in. (She still gets regular CBCs, and goes in for a count if she notices too much bruising, but she stays on the lower end of normal.) It is good that you came here, to get perspective from the folks who live this life. This site really helped me to calm down and know that we could deal with this. The folks on here can tell you that ITP requires some lifestyle changes, but it's manageable, and they live good lives with ITP. In our daughter's case, it required milder sports and activities, but she still had a great active lifestyle even when her counts were low. The early days are scary, when this is new and you don't know how you will respond to treatment or to a low platelet count. Some folks are bleeders or bruisers, and some aren't. Not all treatments work well for everyone. The folks on here have been through most everything, and can offer guidance and answer questions. It's good that you have a hematologist, and it sounds like he is willing to be patient and see how this goes. A good hematologist won't mind you bringing a list of questions and concerns to your visit. They've dealt with most of them. We were blessed with a team of hematologists who were patient and listened, and we soon came to see them as the primary care providers. Over time, we learned what our daughter could tolerate, and we learned to have a plan for certain issues. IVIG is a good rescue treatment for many, if the platelets dip to a dangerous level or a bleed must be stopped. It isn't a cure, and it can have some nasty side effects, but it helped my daughter by boosting the count rapidly, even though it fell slowly over the days after. (If you have IVIG, be sure to hydrate well and ask for benadryl and tylenol before, during, and for a couple days after, to prevent the headache some experience after IVIG.) Prednisone is used by many here to bring the count to a safe level for scheduled surgical procedures. (Yucky steroid side effects, but manageable. Take a stomach protectant and get ready for a bear of an appetite.) Decadron pulse works for some. Daughter tried it, but her platelet count rapidly plummeted, and she developed a nonstop nosebleed at a level she previously tolerated well, and she was hospitalized for IVIG treatment to stop the bleed. (It was worth a try, though, and I'm not sure it didn't play a role in her remission. Although her counts were still not normal, they were generally safer after that episode.) Some of my ITP life management tips: Keep bandages on hand at home and in the car, because you may bleed a bit more freely from cuts and scrapes. If you shave, you may want to invest in an electric razor. If you tend to have nosebleeds, you'll want to keep a kit of supplies handy in the house and in the car. (Afrin spray can stop a nosebleed in its tracks. Put that in the kit, along with paper towels and some bottled water to rinse your mouth after it stops.) Some find an icepack applied to the bridge of the nose slows a nosebleed. Not sure that ever helped with our girl. Use a super soft toothbrush to avoid bleeding gums. Extra vitamin C doesn't bring up the count, but does something good for capillary integrity. It helped our daughter bruise less severely and have fewer nosebleeds. (Too much can cause loose stools. If that happens, just back the dose down a bit.) Eating pineapple and drinking pineapple juice can help bruises go away more quickly. Be prepared for some fatigue with ITP. There are many doctors out there who say that's not an effect of ITP, but there are many patients here who would say otherwise. It may be the drain of dealing with a medical issue, but it's a real issue for many, and it was for my daughter. And while some would say this is a "no brainer," it bears repeating: Ask your hematologist about all your medical treatments, and certainly any medication or supplement that could cause bleeding or clotting. One surprise about ITP is that it may be a bleeding disorder, but, in certain patients, it goes hand in hand with clotting. Lastly, learn to say, "No." Give yourself the freedom to take care of yourself. It's easy for anyone to get overextended on doing for others, but this is a time when you need to do for you.
Peace,
Norma
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