That must be scary.
My daughter will be 5 next week and has had one thing after another going on health wise over the past 2 years. About 2 years ago she started having random bruises that we couldn't explain along with a "weird red rash" (now we know it was petechiae) and small nosebleeds. Since each nosebleed never lasted more than a min or two, we never thought anything of it. Since August we have been getting her looked at for seizures and in April she was diagnosed with Complex Partial seizures. At the end of April she had an allergic reaction to a bug bite (she is being tested in 4 weeks for fire ants since she was around those and spiders right before and my husband is allergic to fire ants). Two days later (on Monday) she had 2 nosebleeds that lasted 1-2 hours each. We kept an eye on her and Tuesday morning she was great so she went to school. Tuesday night she got another and it was very heavy so we took her to the ER. Once there, they did lots of tests and scans and admitted her. By the end, she was diagnosed with ITP, got IVIG while in the hospital, changed her seizure medication, and they took blood to test her for ALPS in addition to basic chromosome genetic testing.
They tested for ALPS because my husband has Hashimoto's and AHA. He was diagnosed with AHA in August/September when he ended up in the hospital with a hemo level of 4.3!
My daughter's platelet levels were at 524 a week ago (1 week after being discharged from the hospital) and her hemo was at 9 (she lost a good bit of blood and was at 7.3 when admitted, dropped to 6.4 after IVIG, and was 7.2 when discharged). We are still waiting to get her appointment for the rheumatologist and see the hematologist again next month. They did inform us that although her platelets look great right now, she is at risk of "relapse" because of her history of nosebleeds and bruises plus the ALPS. Because of all this, she is choosing to change her extra curricular activity from gymnastics to dance. She has been asking to dance for a couple of years but we refused because of costs. Now the gym we have been taking her and her older sister to will not let her participate in the group classes because of her health "issues" and said she would only be able to do private lessons (at $120 a month!).
My husband also talked to his hematologist about everything going on with her and he is now ordered CT scans and tests (including ALPS) to see if there is anything else going on other than AHA and to give us more information as far as genetic disorders that my husband may have or be a carrier for.
The only issue we are having with it is that she is at the point she is "over" getting needles. They have a hard time sticking her because her vain will roll on them. While in the hospital they stuck her 4 times trying to put a new IV in her arm when her other stopped working but they finally gave up and gave her a special bear that she now uses to hug when she needs to get needles. She still fights us on it though.