Is Something Else Going ON?

So my daughter is a twin and both my twins have had chronic nosebleeds since they were less then 1 year old (they just turned 4 in August). I also have two other children with no issues like this.

This April my older twin had a 3 1/2 hour nose bleed and red spots all over her body. This same thing occurred in May which put us in the hospital for a week. Her platelets were 7,000. She got an IVIG treatment which mad eyer platelets spike to 321,000. They slowly went down to about 80,000, then rose on their own to about 113,000 now they are crashing again (57,000 last we checked).

She complains about her bones and joints hurting (specifically her shin bone, behind her knee, her chest bones, and her hands). She sleeps until 11am and that's when I wake her up, then she just lays around the house for most of the day. She will get up and play after a while, but seems to get tired easily. She doesn't eat much anymore, complains about headaches, and is extremely emotionally unstable. She cries all the time and gets irritated and frustrated easily. She often will space out and it's like you can't get her to come back.

She was also hospitalized for severe lead poisoning during the midst of all this, but we got that under control right away with another week of hospitalization and medication.

Does this sound like normal ITP?
Any experience or reliable researched advice?

No, it does not sound like she just has ITP. ITP can cause the nose bleeds and petechiae, but not the bone and joint pain. As for fatigue, some people with ITP feel tired but many do not. Is it possible that she is having symptoms from the lead poisoning? Maybe she's having problems from that. At any rate, I'd talk to a doctor about it and hope that they do further testing.

I agree. That doesn't sound like ITP. I can think of a long list of other possibilities, from organophosphate toxicity to OTC deficiency, that would potentially fit. A hematologist or other doc should perform a suite of blood or other (e.g.: urine, stool) tests to for check liver and kidney dysfunction, micronutrient deficiencies, electrolyte status, metabolic dysfunction, etc. I mention these tests in particular because my hematologist put me through them, and they seem to be relatively common in the process of diagnosing or ruling out various causes of thrombocytopenia with or without other clinical signs or symptoms.

I hope you can work with your daughter's physician(s) to get it identified and treated quickly.