Hypereosinophilic syndrome

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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Hello @vkartsona, welcome to Connect. Was your daughter diagnosed with hypereosinophilic syndrome, or is that the way they are leaning? Here is what Mayo Clinic has to say about this syndrome, https://www.mayoclinic.org/diseases-conditions/hypereosinophilic-syndrome/symptoms-causes/syc-20352854. In that description, Mayo Clinic does mention the use of corticosteroid, but also mentions that it is important to determine the type and cause of HES first. @vkartsona, if you are comfortable sharing, has this been determined for your daughter?

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@JustinMcClanahan

Hello @vkartsona, welcome to Connect. Was your daughter diagnosed with hypereosinophilic syndrome, or is that the way they are leaning? Here is what Mayo Clinic has to say about this syndrome, https://www.mayoclinic.org/diseases-conditions/hypereosinophilic-syndrome/symptoms-causes/syc-20352854. In that description, Mayo Clinic does mention the use of corticosteroid, but also mentions that it is important to determine the type and cause of HES first. @vkartsona, if you are comfortable sharing, has this been determined for your daughter?

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Dear Justin, thank you for your reply. unfortunately we have not determine the cause of the HES. there is no gene mutation and the bone marrow was negative. she took albendazole for the parasites although all the examinations for the parasites were negative. nevertheless, the white blood cells started very slowly to decrease after 3 weeks by the day she ended the therapy (from 50k to 38k). she has taken any corticosteroid yet since they have not found the cause…

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Does anyone have hyper eosinophilla ? Is a bone marrow biopsy necessary for further treatment?

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@zenk

Does anyone have hyper eosinophilla ? Is a bone marrow biopsy necessary for further treatment?

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Hi @zenk, you'll notice that I moved your message to this existing discussion about Hypereosinophilic syndrome (HES) so that you can meet @vkartsona. According to Mayo Clinic https://www.mayoclinic.org/diseases-conditions/hypereosinophilic-syndrome/diagnosis-treatment/drc-20352856 a bone marrow biopsy is not part of the first line of testing for a diagnosis or to develop a treatment. First they need to find out the cause. It is genetic or associated with a cancer, infection or other health problem(s).

Has the cause already been determined through tests, such as blood tests, allergy tests, stool tests or genetic testing?

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My wife has a type of hypereosinophilia, it's called Gleich syndrome. It is a rare disorder. High wbc, high eos but with swelling in muscles of extremities, sometimes painful, sometimes not. It does not cause organ. It's basically episodic angioedema. Blood tests, mri's, ultrasounds, skin muscle biopsies and bone marrow biopsies were done. She takes prednisone for it.

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I was diagnosed with HES 5 years ago after being diagnosed with breast cancer. I was always very healthy until then so did not need blood tests regularly like they want with a cancer patient. They then discovered I had extreme lives of eosinophils. All other test ruled out parasites, infections, genetics, allergies, etc. I was seen by some great doctors at Mayo Clinic and they found eosinophils tissue in my esophagus. But I do not have any other symptoms. Praise God! I may have had this for many many years and it went undetected. My doctors test my blood every 8 weeks and also watch my heart. I hate think some day HES will start to attack my good organs. I'm not sure is anyone else has experienced no symptoms. If so, I'd love to hear from you.

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@jkupratis

I was diagnosed with HES 5 years ago after being diagnosed with breast cancer. I was always very healthy until then so did not need blood tests regularly like they want with a cancer patient. They then discovered I had extreme lives of eosinophils. All other test ruled out parasites, infections, genetics, allergies, etc. I was seen by some great doctors at Mayo Clinic and they found eosinophils tissue in my esophagus. But I do not have any other symptoms. Praise God! I may have had this for many many years and it went undetected. My doctors test my blood every 8 weeks and also watch my heart. I hate think some day HES will start to attack my good organs. I'm not sure is anyone else has experienced no symptoms. If so, I'd love to hear from you.

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Welcome @jkupratis. I'm tagging @zenk and @aer to make sure they saw your post. It's great that you are being monitored so closely, but I can also understand how this makes you hyper-aware (bad pun) of your health. How are you doing?

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