Click on the highlighted link to see our story which made the cover of the December issue of the Epilepsia Journal: My Life With RE. Straight from the heart….
Just got back from the American Epilepsy Society Meeting in Washington DC. Terrific two days of meetings topped off by a meeting of our Scientific Advisory Board along with a number of guest participants. We met for an hour and half and discussed our research agenda as well as the agenda for our upcoming February research symposium.
We also recently learned that a scholarly article written by members of our Scientific Advisory Board has been accepted for publication by The Lancet Neurology. This is a highly prestigious publication and will ensure that epileptologists around the world will have the latest literature concerning RE.
We continue to receive e-mails from around the world from parents dealing with the shock that their child has RE. Here is a recent one…..(names changed).
My name is Sam W. My 5 year old daughter Gena, was diagnosed with RE yesterday afternoon.
I would like to thank you and everything that your website has provided my family and myself to start this terrible journey.
I began doing research on the RE a week or so again as it became more and more apparent that Gena may be diagnosed with this disease.
The seizures came from nowhere approximately a year and a half ago (August 17th 2012) and since then it has been a progressive downward spiral for her. She is a strong little girl as most kids are and keeps her spirits up, but as everyone knows who has dealt with RE, some days are better than others and for every step forward there is two or three back.
Our ( My wife Ann, Gena , my 8 year old daughter Hannah and myself) worst fear came true yesterday afternoon when we were told to get a second opinion, which is ironic because this is our third doctor who has thought such a thing starting last year.
Of course it goes without saying that we will do anything and everything to make our baby better. We (more myself) are not sure if we should “drag our feet” anymore with more doctors and medicines. She has been on 4-5 meds given both morning and evening and while the seizures have tailed off she recently has developed a “tremor” or “shake” which appears to the doctors to be a constant seizure (EPC). We just want her quality of life to improve, as you know everyone , but especially that little girl has been through so much in the last 1.5 years.
A spinal tap has already been done which showed inflammation of the brain and their has been shrinkage in the left hemisphere of her brain ….. which may not be too bad (if that term “too bad” can even be used in these situations) for Gena since she is a lefty. She currently is getting the IVIGs and has already received 2 of them and is scheduled again in late December for her next one.
We are a wreck right now as far as emotions are concerned and I am very worried not only for my daughter(s) involved but for my wife as well. I know it is early and it takes some time to set in and to accept such a “shock”, so I am hoping it gets better. My 8 year old daughter ( and Gena’s best friend ) knows that Gena is sick but really hasn’t gotten the concept down yet and we have not said a word to her about the news we received yesterday concerning RE and Gena. Of course she, along with everyone else is going to be crushed and have a million questions.
I am not really sure which step to take next and I am very scared for my daughter and the rest of my family. Any help or advice would be welcomed. I will continue to educate myself and family on this disease both at the REchildrensproject website and elsewhere. I just wanted to vent and to say thank you during this difficult time. I do know that my family and little angel are not alone and that is somewhat comforting.
These families are devastated. Please consider donating to the RE Children’s Project. We need to find a cure.