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Hypereosinophilic syndrome (HES)

Posted by vkartsona @vkartsona, Jun 26, 2019

Hi everyone, my 5 year-old daughter started having rashes early may, and after the first blood exam, the white blood cell count was extremely high (~40,000) with 69% eosinophils. after excluding parasites (toxocara), other external factors, etc. and with a negative marrow exam, we are left with no real answers. Organs (heart, liver, etc) are intact and normal, and there are no other symptoms. She is happy, looks healthy, and has no other issues other than the rashes on the legs. I imagine the next step is cortizone, but wonder if anyone has a similar case to share on the outlook, treatment, process, etc.. thanks

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melsewe | @melsewe | Feb 15, 2025
In reply to @vkartsona "Hi @tiffanyq. Have u done exams for parasites? Especially one called toxocara. That was the first..." + (show)
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Hi @tiffanyq. Have u done exams for parasites? Especially one called toxocara. That was the first thing they searched for while my daughter had very high eosinophils. Unfortunately she was negative on that. But definetely u should do all the parasites exams before u proceed with other exams. This is what they all told us. My daughter’s case was really hard. Her exams showed 79% eosinophils in 140k white cells count. She was treated with imatinib for 4 years. Wishing u all the best!

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Hi @vkartsona Imatinib is a cancer drug. I thought, per your original post, your daughter tested negative on bone marrow test. How is your daughter doing now? Does she still take Imatinib? What was her diagnosis?

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vkartsona | @vkartsona | Feb 16, 2025

Hellob she took it for 4 years and all her exams were normal. She has stopped it one year and a half and everything is still normal 🙏🏻🙏🏻🙏🏻

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anne111 | @anne111 | 6 days ago

Does anyone out there know of any children's hospitals that offer stem cell replacement for patients with HES when other more traditional treatments have failed?

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Lori, Volunteer Mentor | @loribmt | 6 days ago
In reply to @anne111 "Does anyone out there know of any children's hospitals that offer stem cell replacement for patients..." + (show)
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Does anyone out there know of any children's hospitals that offer stem cell replacement for patients with HES when other more traditional treatments have failed?

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Hi @anne111 I’m so sorry to hear that traditional treatments haven’t been successful for your child’s Hypereosinophilic syndrome (HES). From my understanding, a stem cell transplant (SCT) may be a potential cure for HES but not everyone’s a candidate. So a consultation with a specialist will be your first step.

This website for bmtinfonet.org can be very helpful in locating a pediatric transplant hospital. You can type in the info for your particular needs.
https://bmtinfonet.org/transplantcenters
I also know that Mayo Clinic offers pediatric SCT transplants. If you’d like to request an appointment at one of the Mayo Clinic campuses, either in Rochester MN, Phoenix AZ or Jacksonville FL, here is a link to start the process. http://mayocl.in/1mtmR63

Has your child’s doctor discussed the possibility of a SCT? Did they offer any recommendations?

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