Ohtahara Syndrome (God Bless Ivan Cameron!!)

[Elaine H]

To all you Brits out there, you will have heard that David Cameron (leader of the Conservative Party) has just lost his little 5 year old son. He had a very rare form of epilepsy called Ohtahara Syndrome, which has simliar traits to Cerebral Palsy. I have to admit, I hadn't even in my four years of studying epilepsy, come across this condition, and I just wanted to bring your attention to it.

It is a very rare form of eplilepsy affecting boys more than girls. It affects newborns, usually within the first 3 months of life, most often within the first 10 days, and takes the form of seizures.The condition is most commonly caused by metabolic disorders, or structural damage in the brain, although the cause can't always be determined. Most infants show underdevelopment of part or all of the cerebral hemispheres. EEG's of infants with Ohtahara Syndrome show a high voltage spike wave discharge followed by little activity, this is known as "burst suppression" Sadly, it is a very progresive condition, with the seizures getting worse, this little boy had Cerebral Palsy aswell, and lived to be 6, although from what I can gather from the press, the Camerons weren't expecting he would live to be very much older.

I just wanted to bring it to your attention, as I had never heard of it before, and the word epilepsy has been on the national news, and in the papers which as sad as it is, will only be good for bringing people's attention to all the different facets of the condition, the people it affects, and how it affects us!

I hope you will go on to explain this to all your friends and family too, God bless the Cameron's, and my thoughts are with them at this difficult time!

Best Regards

Elaine x

[Bernard]

Some resources for Ohtahara Syndrome:

http://www.ilae-epilepsy.org/ctf/ohtahara_syndrome.html

http://www.ohtaharasyndrome.org/

[Meetz1064]

how sad. My thoughts are with them.....

[brain]

My sympathies goes out to his family as
well; it was published in the newspaper
and announced on the air.

[Dutch mom]

Hello Elaine,

Í do know Othahara syndrome better as I would like to know it. I'm hosting a Dutch parent support group and a forum for parents who all have children with a child epilepsy syndrome or a maligne and difficult to control type of epilepsy.

Othahara is indeed very rare. We've had only 6 children in our group in 6 years (5 boys, 1 girl). Only two of them are still alive, they're both 3 year old kids now with severe multiple complex handicaps. Most children with OS die shortly after birth or in their first few years because this syndrome is caused by a seccere malformation of the brain. Three of 'our children' we've lost between age 0 and 2. Last December we've lost a wonderfull boy age 16, who was known to be the eldest patiënt with OS alive in the world. His mom is a dear friend to me.

http://www.guardian.co.uk/society/20...ahara-syndrome

http://news.bbc.co.uk/1/hi/health/7909564.stm

Video condeolances in Brittish parliamentary tributes
http://www.guardian.co.uk/politics/v...n-gordon-brown

My deepest sympathies to Yvan's parents. Let's hope his dad will use his influence to make life better for kids with epilepsy and handicapped children and their families in England. Cameron is a vice-president of the National Centre for Young People with Epilepsy.

[rhondalto]

My daughter has Ohtahara syndrome. She is now 2 1/2. Unfortunately, the way I feel at this point is that there is little or no one doing research on this as it is too rare. I wish she had cancer, which is an awful thing to say, but at least there are millions of people and millions of dollars going into research for it. There is a chance of treatment. I need to spread the word on terminal epilepsy illnesses, but have no idea how~

[Rae1889]

I understand where you are coming from rhondalto. I am sorry your daughter has to go through this. its not right for anyone to be so ill and not be able to enjoy the life they have.

But i guess you can only make those loved ones comfortable and happy. as there is no way to force more research to be done. as much as we would all like that.

Has she tried any sort of specialized diet? like ketogenic? or neurofeedback? i don't know how much good they would be with someone so young.

"Terminal Epilepsy Illnesses". I'm not sure of the average life span of a reuglar epilptic is, but i bet it is still lower than a "healthy" individual. which sadly means that all epilepsy is fatal. Whether from falls or drowning etc. But to have it terminal where you do not have a good prognosis on life is terrible.

Sadly there are not alot of children with Ohtahara Syndrome that allows for reseach. I guess its a catch 22. on one hand, everyone needs more research done so they can find a "cure" or at least prolong the quality of life, but they can't do the research as the sydrome is so rare.

I feel for you dear. My fiance's cousin has Joubert's syndrome. approx 500 cases documented *ever* world wide. she is 15 right now. and they didnt expect her to live much longer after birth. her parents were told she would never walk, talk, eat on her own, read, write etc. but she does all of them. she has seizures and several disabilities. *little speech but she signs* so she is hope for other children with Jouberts, as her parents were not giving up on research and trials.

I hope that gives you hope too, so you can push forward with your little girl and help her live long and happy.