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Study Open to F.I.R.E.S. (rare epilepsy syndrome)

EpilepsyEducation-FIRESFebrile infection-related epilepsy syndrome (FIRES) describes an explosive-onset, potentially fatal acute epileptic encephalopathy that develops in previously healthy children and adolescents following the onset of a non-specific febrile illness.
 
We would love to enroll your family and any other families with FIRES who would be interested. 

Our group tries to identify the genetic cause of many rare conditions. Once we have a group of families with FIRES enrolled, we can begin analysis and if we find results, they can be reported out to specific families.

“We are a group of researchers in Boston interested in learning more about the genetic causes of rare conditions, like FIRES. We believe that by identifying a genetic cause, it may speed up the diagnosis process and give us a better understanding about the underlying biology of disorders. Enrollment is ongoing and participation is free, with no travel to Boston needed.

Participation includes completing some paperwork, having a research phone call appointment, and providing a DNA sample (through either blood or saliva). We try to enroll anyone who is affected and their first degree relatives (parents, siblings and children).

After we receive the DNA samples, the family’s active participation is complete, and our studies are ongoing with no set “end date.” We will be performing various types of genetic analysis on the samples with the goal of better understanding the genetic cause of FIRES, and multiple doctors and researchers here might access your sample to help us achieve this goal. If a clinically significant result for your family is found, we can report that back to you with the help of your doctor.

If you are interested in learning more, please contact the study coordinator Meghan Connolly at Meghan.connolly@childrens.harvard.edu or 617-919-4287.”

For more information:  http://www.childrenshospital.org/cfapps/research/data_admin/Site2673/mainpageS2673P0.html

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9 Comments

  1. Thanks 🙂

    Reply
  2. Chuck Carmen you are the best 🙂

    Reply
  3. Dear Sir/Madam, my 12 yrs old daughter has been diagnosed asFIRES ,i would like to enrolled in the group i am from india pl tell me what detsils i need to send you .

    Reply
  4. My name is christy fuller, my daughter nevaeh was diagnosed with f.i.r.e.s in July of 2013. She was a healthy child. She developed a fever and had a seizure. She was rushed to to covenant hospital in Saginaw mi. Where she was intubated within minutes of arrival. She continued to seize for the the next 5 days even after medications. My husband and I then decided to have her air lifted to the university of michigan mott childrens hospital in Ann Arbor mi. The survival pilot advised us she had seized the whole trip. She was then put into a coma. She had stayed that way for a week and was tried to be weaned off and and had to stop because she was showing signs of seizure activity. She was then put on a ketogenic diet. That was the only thing that worked for her. She went through weeks of physical therapy, occupational therapy, speech therapy, and is now currently having memory difficulty. She is in the 2nd grade and has a personal aid with her through out the day . I would love to know the cause and effect of why this happened to my daughter my phone number is 989-401-0482 please contact me asap

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  5. My 7 year old daughter has been in induced coma for FIRES epilepsy for past a month. I would like to participate in the study. Call me at 404-452-1196
    She is in PICU in Children’s hospital of Atlanta. Doctors seems to not know next plan for the treatments.

    Reply
  6. Hey I’m from South Africa my son was diagnosed with FIRES in 2013 December….after almost losing him he was seen by a specialist Doctor James Butler in Cape Town he has recovered to an extent however he is on constant medication and still gets seizures….im just looking for more information or assistance or any new research that can assist me with this condition….

    Reply
  7. Dear sir / Madam,

    My 13 year old son
    had first convulsion in April 16 and since then is suffering from FIRES for the last 1 year
    He was put on induced coma for 3 months. Presently he is on very high anticonvulsants which are controlling him still he gets minimum 5 to 6 seizures of 2 mins duration every month.. and when close to full or new moon.. he definitely gets..those.
    He has developed contextures and still unable to stand. Food pipe was removed last week only.
    Ketogenic diet was of no use since beginning.
    Anybody knows any cure , remedy or medicine to stop these…please share with me.

    Reply
    • Profile photo of EpilepsyU

      Has you son’s doctor considered using Medical grade CBD. We have known of several cases of F.I.R.E.S. treated successfully with medical CBD oil.

  8. Dear sir / Madam,

    My 13 year old son
    had first convulsion in April 16 and since then is suffering from FIRES for the last 1 year
    He was put on induced coma for 3 months. Presently he is on very high anticonvulsants which are controlling him still he gets minimum 5 to 6 seizures of 2 mins duration every month..

    Ketogenic diet was of no use since beginning.
    Anybody knows any cure , remedy or medicine to stop these…please share with me

    Reply

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