Early Infantile Epileptic Encephalopathy

[Grandparick]

Our 5 month old grandson was in hospital a month tell tey told us this is what he has. Not a good out come if you read up on what little they have on this. Is there any one else in the group who has a child who has or is dealing with this. I'd love to talk with you. We lost a daughter 8 yrs ago and deep inside my heart is heavy with the thought of losing a grandchild also in my life time.

Grandparick

 

[Dutch mom]

Welcome grandparent, to the CWE forum,

I do feel very sorry and sad for you and your family about the diagnosis Early Infantile Epileptic Encephalopathy. I can imagine your worries about having to loose this grandchild at an early age because this diagnosis doesn't have a good prognosis. This condition is a very rare epilepsy syndrome also known as the 'Othahara syndrome'.
Sometimes Othahara syndrome is an early onset of symptomatic Infantile Spams, (IS) the burst suppresion pattern on the EEG can change into a for IS typical hypsarythmia EEG pattern. This may develop in the Lennox Gastaut syndrome (the epilepsy syndrome my 9-year old son has.)

The course of Ohtahara syndrome is severely progressive. Seizures become more frequent, accompanied by physical and mental retardation. Some children will die in infancy; others will survive but be profoundly handicapped. As they grow, some children will progress into other epileptic disorders such as West syndrome and Lennox-Gestaut syndrome. http://www.ninds.nih.gov/disorders/ohtahara/ohtahara.htm

I welcome you here because I think I might be the only one or perhaps one of a few members here who knows parents & their children with the same diagnosis as your grandchild. I don't think we've other members on CWE who have (grand)children with this epilepsy syndrome.
I'm hosting a Dutch support group and forum for parents to children with several maligne epilepsy syndromes. Among our many members Early Infantile Epileptic Encephalopathy is very rare. These Dutch moms also do write on this support forum, I think you'll get a warm welcome there and lots of information: http://www.ohtaharasyndrome.org/

On our Dutch parent support forum we've had only six members/parents to children with the Othahara syndrome; I really do regret to say that, in 6 years, we've lost 4 of them; 3 of these kids died at an early age (3 months - 2 years.) But one of them has ignored all bad prognosises and has lived to be 16; he died last december. At this moment in our group we've a 3-year old boy and a 3-year old girl with Othahara syndrome. For now, they both do well, I'm happy to say so, no severe health problems. But their development is very slow, they're both 100% dependent, can't walk, sit, crawl, talk. Children with Othahara's have severe complex handicaps and several health problems and they're very 'floppy' in their muscles. Many are G-tube fed. The kids with OS I know all are beautiful children with big eyes and long eye lashes.

The only reference on CWE is in this recent thread http://www.coping-with-epilepsy.com/forums/f31/ohtahara-syndrome-god-bless-ivan-cameron-5954/ Not a joyfull one, I'm afraid. You can find a few links in this thread to more information on Othahara's.

My heart goes out to you and your son & daughter (in law); this diagnosis will have an enormous influence on your lives. I do hope you'll find your way in dealing with this sad reality and hope you do get the chance to enjoy the very special gift this special needs child can bring to your lives.

 

[RobinN]

Welcome Grandpa Rick - I am here at CWE because my daughter has seizures. We are still after 2.5 yrs attempting to figure out why, but I do understand your frustration and concern. It is quite distressing not being able to help a child. For you having been hit before, must be heartbreaking.
I do hope we can help find you some information. I always believe that I can face almost anything as long as I know what it is that is before me. We are here for support and to help you cope.

I know when I research my daughters situation, I put in two words into a Google search, and read and read and read. Then two more....

Give that baby a hug from me.

 

[Grandparick]

Facing the losst of another child

This Early Infantile Epileptic Encephalopathy my youngest grandson has has got me in a sort of a depression I can't seem to shake at times, It's hard to face the fact of the loss of another child in my life time. 8 yrs ago we lost our oldest daughter she was 28. She was raped by a man who knew he had Aids. I watched my daughter live and fight for her life for 10 yrs. I can't get it out of my head of how long will our gramdson fight. Of course no one knows at least here on earth. Our grandchildren is what brought us back to life after the loss of our daughter. Gave us what we once started a life together for. A family, children, grandchildren. I know there are those who might say it is life. But life is sometime hard to take. I also look at the other 4 grandchildren we have who are healthy and give thanks. And when your with them you forget for awhile about the up and coming event we are to face. And at night while I set and watch tv my mind wonders and I remember back of the hell we once were taken through. True we are just the grandparents but those grandbabies of our we have be lucky to be close to all of them since all their births. And I understand the grief journey we are facing. I have 3 grief support groups on the internet. And have worked in them since our daughter died. But still it is hard facing the loss of another child.

Grandparick

 

[Dutch mom]

Hello grandpa Rick,

This article is about David Cameron's son and the meaning of life regarding children like him and children with ceberal palsy. It's written by a dad of a child with Down syndrome. It puts the lifes of your grandson and my son in another perspective.

http://www.timesonline.co.uk/tol/comment/columnists/dominic_lawson/article5822148.ece

Yet even those who think of themselves as sympathetic can be astonishingly insensitive - in the nicest possible way. I couldn’t help noticing how many people expressed the view that the death of a totally dependent child with multiple disabilities, including an undeniably distressing form of epilepsy, must also have come as a relief to Mr and Mrs Cameron.

What underlies this misplaced pity is a kind of selfish empathy. Someone sees a child lolling in a wheelchair and thinks he himself would rather not have been born than exist in such a condition - and so he decides that it would have been much more humane never to have allowed that child to have been born. He does not, however, consult the child.
Recently researchers from Newcastle University have done exactly that. They applied standard self-assessment techniques used to appraise children’s levels of happiness to 500 young people with cerebral palsy. The results, according to Professor Allan Colver’s report in The Lancet, “demonstrated that children with cerebral palsy have levels of happiness not significantly different from those of the general population”. He explained that “someone without a disability would say that he would be unhappy if he was disabled; but for the person with cerebral palsy - that’s who they are, and as they grow up and develop their sense of self, that disability is indistinguishable from their identity as human beings”.

His mother explained to the startled interviewer that “he’s telling you that we instinctively judge his life by looking at it through our able-bodied eyes, and we see it as a tragedy. But to him, it isn’t like that at all: it’s just life! It’s as normal to him, as grand to him, as complete for him, as our able-bodied lives are to us. You assume the greatest thing you could offer him was to get out of his wheelchair, and he’s turned it round and told you, ‘I’d get right back in again.’”

By contrast, Ivan Cameron seems to have had outstanding hospital care, and his life had been preserved on many occasions by prompt medical treatment. Yet I’m sure David Cameron knows that, because of who he is, no doctor would ever have dared say to him, ata moment of greatest need, “You should realise that children like these are going to die sooner or later”; and that most parents of disabled children endure a constant struggle to convince the world outside that they are fully human, too.

 

[Bernard]

Hi Grandparick, welcome to the forum.

I'm sorry to hear about your grandson's diagnosis and the loss of your daughter. I hope you find some comfort here.