Anyone with experience of Ohtahara syndrome?

[OnlyFunctionsWithCaffeine]

My friends baby daughter has just been diagnosed with this, does anyone have any experience of it? There doesn't seem to be a lot of information available on this syndrome.

Or even any advice on what a social worker could offer her? She's had no help from her appointed social worker who was appointed to help because it is a life limiting syndrome. She doesn't drive and struggles to get to and fro from the hospital to spend time with each twin.

Sorry should have mentioned, she had two twin daughters, one with ohtahara syndrome who is in and out of hospital for days/weeks at a time and another daughter at home with family, she is a single parent.

Hi, thanks for posting on behalf of your friend. I don't know about the syndrome you mentioned - only that it is a form of epilepsy that David Cameron's son Ivan had.

Two practical things that the social worker could help her with spring to mind. One would be the application for DLA - disability living allowance. As it is a life limiting illness the application will be fast tracked. It will give her some help with expenses such as the travel to and from hospital. Although this may also be funded separately dependant on her income. Another possible source of practical help is the Family fund which offers funding for eg driving lessons - this would be more helpful in the long term.

some links here:www.direct.gov.uk/en/CaringForSomeone/index.htm
www.familyfund.org.uk/
www.direct.gov.uk/en/MoneyTaxAndBenefits/BenefitsTaxCreditsAndOtherSupport/Illorinjured/DG_10018959

Also here to a charity React which supports families of children with life-limiting illnesses: www.reactcharity.org/what-we-do.php

And once she is up to it she might want to post here herself? I know there are other people on this board who are in a similar position.

she also needs to contact her local carer's association. some towns have a list of volunteers who will drive people to and from hospital for petrol money.

the consultant should have already advised her of dla eligibility. ask to be put in touch with the local sn health visitor through medical centre/ gp or local children's centre - they are great at filling out dla applications and have experience of the life limited applications. i suspect a sw won't be as au fait.

Thanks so much for the replies I'll let her know everything and once she has her head around things more she may come on here to get some support too.