It is very confronting to hear the news that your child may have to face this type of surgery due to refractory epilepsy (ie not successfully controlled by meds) he or she has… this has happened to Mr D.
A few months before he turned 2, when we received the diagnosis of HHE Syndrome, we were told that in most cases of this syndrome, medication does not work, the side affects, brain damage and cognitive function (ability to learn and retain information) would be in danger of declining over time, or just remaining static. We were faced with the harsh reality of choosing what rabbit hole to jump down into.
We chose to get a second opinion, which we did. After an 18 month wait, we flew to Melbourne and obtained a second opinion. This opinion we sought, now had 3.5 years of growth and development to compare with. We were told contrary to earlier opinion, that to commence surgery would be hasty at this point in time.
Jump to a further 12 months, again flying to Melbourne and speaking with 2 great neurologists – one in Brisbane and the other in Melbourne – both whom work together, go to conferences together and speak at these conferences and it has happened again. There has been a 180 turn on the opinion of Mr D’s future regarding surgery. It is now recommended that we seriously look into it to give him the best quality of life – one that is seizure free.
The issue with HHE – and we seem to be classic case of HHE from the earlier case studies that we have read, is that the side of the brain that has shrunk, is interrupting the good side constantly from getting on with it’s job. It’s playing havoc, stuffing up the signals that need to be sent from the brain to the various parts of the body. It takes longer to set neural pathways due to the constant stream of interruption.
We are very fortunate that for Mr D we have a bit of time up our sleeve but that time is slowly ticking away now as he is well and truly over 5 years of age. We have the trials to content with for new meds, possible diet options as well as this surgery option. All will take time, all will involve lots of testing and review.
We are very fortunate that the first Australian Group supporting families having had this surgery, or facing this surgery, is having a conference in March this year on the Gold Coast! We are heading along to find out more and to meet families with children that have had this done. It is sure to give us some great insight.
The video below is one that I watched very early on in the game to try and understand the underlying factors of hemispherectomy surgery. If you want to understand more, please watch it!