HHE Syndrome – Rare Connect

Hello 🙂

If you have landed on this page, you are probably looking for information on an Epilepsy Condition called HHE Syndrome.

HHE Syndrome – otherwise known as Hemiconvulsion Hemiplegia Epilepsy Syndrome, is a rare epilepsy condition found in children.

There is not a great deal out there, and when we discovered our son had this condition we set up a Patient Connect page through Rare Connect Eurodis, to help others connect and find out more to help our kids live their lives to the fullest.

There is also brain surgery – a radical brain procedure that disconnects the 2 hemispheres.   We are about to go down this path with our son…. watch this space.

We aren’t the first family to encounter this, and we certainly won’t be the last!

I believe there is a brighter future for our kids that live with this condition and by sharing our stories, is a crucial step in spreading awareness and hope for these little champs.

To read more about this condition and patient stories, please visit Rare Connect HHE

Hemiconvulsion-hemiplegia-epilepsy Syndrome (HHE) is a neurological disorder, which presents itself as a febrile illness at the onset. Fevers and convulsions are only reduced/stopped via medications. The patient is left with a resulting hemiplegia from the affected hemisphere. MRI and EEG tests show a resulting acute atrophy of one hemisphere of the brain – of which will depend on the severity of the hemiplegia.*

*as was this case for our family

There is no cure at the moment for this severe refractory epilepsy.  There is only management of the condition itself which requires a high dose of anti-epilepsy medications which present a whole host of side affects – cognitive interruption – fine and gross motor skills impairment, memory issues which affects learning abilities.

Hopefully, one day there will be a medication that can help our kids without terrible side affects, until then, we research and share findings to help with this cause.

 

2 thoughts on “HHE Syndrome – Rare Connect

  1. My granddaughter took a temperature fit at 15 months and had to be put into an induced coma to stop her fitting. The hospital took all kinds of test but could not find out what was causing it after a week they brought her round the doctor told us that it looks like she had a stroke. But then they done a test on her brain and found out that half her brain had been killed off after a week a doctor said that he had seen it in a book and said that it was HHE syndrome the only thing is that she has never had a fit since. we have had no help from any body as they say that their nothing they can do. They said that she would never walk but she can she is now 13 years old. We would like to know if this has happened to anybody else

    1. Hi Brian, we have a facebook support group if you would like me to send you the details?
      I think with HHE syndrome, it affects all kids so differently, there can be similarities, but the brain structure is so unique, so we never really know what’s going on. I know with most kids we have come across in our group with HHE syndrome unfortunately still battle with seizures. Your granddaughter sounds like she has shown those doctors how she is going to do it, and I love that!

      Like

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