Our CHD2 son is now aged 21 and has for the last year has been bossing us around in our own home: making decisions about who should be in what room…
Moving towards independence
Is it OK for children with a CHD2 diagnosis to take multiple anti-seizure drugs?
Should parents worry when their child has been prescribed multiple anti-seizure drugs? The answer probably depends on which ones. This post explores how each of a number of popular drugs…
CHD2 Prognosis in the UK – do we have the whole picture?
As a co-founder of the CHD2 UK support group, I was becoming increasingly aware that many of our new families with recently diagnosed CHD2 children were having difficulty coming to…
Medication Side Effects – Keppra (Levetiracetam)
It was so hard without genetic testing for us, my son, Elias aged 36 years almost killed himself under Keppra. In the first week of introduction of this anti-seizure medication…
Children’s social care: a parent’s perspective
According to advice on the Contact For Families With Disabled Children website, "the law says that councils must assess every child who is or may be a child ‘in need’.…