I appreciate this may be a long one. My son is almost 2 years old and since the age of 3 months he has been suffering with seizures. The first seizure that he had was when he had a high temperature and i phoned an ambulance and was advised it was a febrile convulsion, after this he went on to have seizures several times when he had a high temperatures, we were given advice on how to deal with febrile convulsions and accepted that this was something we would need to live with until they grow out of it.
However, this is where things started to change around the age of one. My son started to have strange episodes. at first, this was always when he had a high temperature. I’m going to try and explain the best that I can so sorry if this is a little confusing. it became very regular that he would have a high temperature for seemingly no reason - he was not unwell, did not have an infection and when I took him to the doctors, they advise that they could not find anything wrong. He would repeatedly have these high temperatures every couple of weeks, which inevitably led to a seizure, or multiple over a few days. We have been back to the doctors several times regarding this and have been put on a waiting list to see a paediatrician the waiting list however is 12 months. I will also say that these temperatures aren’t just slight temperatures. They are really high usually 40 or 41°.
Over the past few months, things have started to develop and change even more. He has recently started having what myself and nursery believe to be absent seizures. He has vacant episodes where his eyes twitch and roll, and he stares off into space for a few seconds, and then comes back to normal. alongside this, he started to have some strange episodes as we call them where he will go grey, sometimes blue around the mouth and he will be shaking/quivering. His eyes roll back and he goes quiet and it seems like he is feeling faint. He will then fall fast asleep for about 45 minutes and wake up as if nothing has happened. He also falls asleep after the major seizures that he has so this is why I believe that this is all linked.
we seem to have two things going on here. Repeated high temperatures for seemingly no reason and then the seizures, which aren’t now always linked to a high temperature and can sometimes happen without a temperature. The seizures/episodes as I explained above also changed. Sometimes he has a full-blown seizure sometimes he’s just shaking and going grey and then falls asleep, and sometimes it seems he’s having an absence seizure.
I’m wondering if anybody has any suggestions of what could be going on here? It is really scary that this keeps happening and I feel like it is ruling our lives. We don’t know when the next one is coming and it’s really upsetting. I feel like I’m spending all my time researching what it could be and none of the symptoms or triggers seem to match properly to any disorder.
we have decided due to the waiting list times that we are going private and I currently waiting on a neurology appointment. However, in the meantime, I would like to go to the appointment with as much information as I possibly can.
thank you if you got this far.