My 2 year old daughter was diagnosed with ITP this past June. It started with the excessive bruising and us, by chance, asking the doctor to run some labs. Of course, her platelet count was low and she was asked to follow up with some more lab work a week later. A couple of hours after getting some more blood work done, the doctor called and told us to take her to the hospital immediately, her platelet count was at 4,000. She wasn't bleeding out but was starting to bruise in the creases of her arms and legs and definitely looked like an abused child. This was all very scary. That night we were told that she had ITP and was given her first treatment of IVIG- pretreated with the Tylenol Benadryl cocktail. Still on the way home, she had a fever, had thrown up, and had diarrhea. Since then, she has had 3 additional IVIG treatments, none which have lasted longer than a month and with the last treatment lasting less than two weeks before dropping back down to 4,000. Her counts tend to be pretty low. We are "happy" if we get a count higher than 25. So after 8 months and 4 IVIG treatments the doctor decides to try steroids (which we had been trying to avoid- scared of the side effects). Now, with "unfavorable" results, she is coming off the steroid. On them, her count went up to 60 the first week and then dropped down to 29 the next week. Another disappointment. We are starting to wonder if at 2 years old, she now has chronic ITP. Our doctor has definitely been wonderful but we are looking to get a second opinion. I think we are scared that we are missing something. Everyone says that ITP is a diagnosis of exclusion, but what if we settled on that diagnosis and are missing something bigger, something that would explain why the treatments aren't helping her get better. Or maybe, we just need to accept that these are "treatments not cures". Any advice or anyone with any similar experience????
Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006.
Last Count - 344k - 6-9-18
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You're right, the treatments are not cures and most likely will not make her better. Most of the treatments raise counts temporarily although some can last for a while and others can induce remission.
Most of the time, if a child's CBC is normal except for the platelets and there are no other physical symptoms, it is ITP. ITP is a series of ups and downs, that is normal. Once the treatments wear off, the counts drop again.
Please know that the chronic label doesn't mean much. I have seen many children who were chronic go into remission after a period of time, years even. Chronic only means that the child has had ITP more than a year. It is not a lifetime sentence.
Hi Jessica, when my son was 5 he got ITP. That was June 12 & he's platelet levels were 2. He was given no treatment, our doctors said they wanted to give it time & see if the antibodies cleared out without treatment. It took 12mths. It was tough but TG it resolved itself. After they went up to 34 he was allowed back to he's normal activities. Maybe sit tight without treatment for a bit & see if it resolves itself. I have all he's details in another thread called ITP Resolved. Any questions don't hesitate to ask. Linda
This is just off the wall but has she had any allergy testing? Our son with ITP was found to have multiple allergies to foods, a bad egg allergy and also foods that never seemed to cause him trouble outwardly like soy and wheat. Were trying to go completely allergen free to see if that helps his platelet counts get back up. Anything that triggers the immune system will kill platelets as well, from what I understand about it - which admittedly is not much.
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