01/10/2023
I have been very quiet on this page but you will start to see more activity here now. Since my last post, our youngest child Carter has been diagnosed with epilepsy. So that is now 3 people with epilepsy in our household. Carter only ever had complex febrile convulsions, during this time he did have 2 seizures with no fevers but he fell sick the next day, so they called it atypical complex febrile convulsions.
Earlier this year, we noticed Carter doing repetitive facial movements and not responding to us. We were told it was ADHD motor tics and to ignore it. The rationale was the Ritalin he was on but this didn't sit right with us because he didn't have a medication increase and by this stage he had been on Ritalin for 2 years. So it made no sense that these facial movements just randomly started. His school marks started going backwards too. So we were worried but being ignored by healthcare professionals and they refused to do epilepsy testing to make sure given the history of David and Jasper. So we were pretty annoyed, it was frustrating that they wouldn't listen to us and that we had concerns. However, we just kept on keeping on.
17th August, we received a phone call from Carter's school. They told us he was having a tonic clonic seizure and that the ambulance was on their way. Luckily there were fire fighters at the school to do a demonstration with another grade, so they rendered assistance whilst we waited for the ambulance. Carter also then declared to us that he has these weird dreams, he describes them as out of body experiences and we started documenting these reports and he was having 2-4 per day almost everyday.
We were finally heard by Carter's healthcare team. They agreed to do epilepsy testing. We did feel they tried to blame his ASD and ADHD, but I put my foot down and told them to assess him as the child in front of him, listen to what he has to say. He has had an MRI, short EEG, and a long EEG. Everything so far is normal, this was the case with David too, neurology has often said that EEG's aren't reliable source even if someone is seizing right in front of them. We are still waiting for the results of the long EEG, he had it on for 6 days, so hopeful something might have been detected on that. We have invested in a SAMi camera to monitor him and have picked up unusual things in his sleep.
Carter has been started on epilepsy medication. We didn't explain to him what the medication was for, just said he was starting new medication, just to see what he says and how he responds to it. The highlight for us is he said his brain feels better (after 2 weeks on the medication) and has no longer reported those 'dreams'. We have since explained the medication to him but so thankful that it appears to be doing something for him!
So this month is "Walk for Epilepsy", I have signed up (its free) and I am fundraising. You can join my team "Shaken but not Stirred" and walk daily to raise awareness. I am fundraising for Epilepsy Queensland. These funds will help individuals and families be support with epilepsy, help fund community programs, help fund research, and more! So please consider a couple of dollars. I understand it is tough times at the moment, but $5 would be amazing for this organisation. My link is:
I'm Walking for Epilepsy to make sure no one has to go it alone! I'll be walking my local neighbourhood to contribute to a collective goal of 25,000 kilometres in honour of the 1 in 25 Australians living with epilepsy. Every dollar counts, so please support me if you can.
