Wha??

So for quite a while I've been trying to get people involved with Nate to understand the odd hysterical laughing episodes he has. They were dismissed - can't be seizures as that type "are extremely rare" and we were sent away. They are infrequent but distressing for Nate and us. After much pushing an EEG was arranged but the results were normal. The episodes seemed linked to times of sleep deprivation where Nate would be quite hyper and manic and refuse sleep. His neurologist suggested an MRI and sleep deprived EEG. The issue being Nate is a terrible sleeper, however, he does nod off for short periods and is then awake so how I could keep a low tone complicated child awake for 6hrs at night? The only exception to this sleeping pattern is when Nate has the hyper nights and laughing episodes the next day but the EEG would be unlikely to hit on one of those times. We agreed to be in touch if these "moments" were more frequent or became worrying ,and to try to film one. The neuro said because of his neurological issues Nate might have a lower threshold to seizures so things like sleep deprivation and illness could be triggers. 

On Tuesday and Wednesday of last week nates movements were quite hyper, sweaty, and jerky. By Wednesday night I became worried that whatever his neurological condition is that is was deteriorating (or at least changing) as he just wasn't himself. The only other thought in my head was that maybe it was his brain being a bit short circuity because of the stimulation and hard work he had been doing at school. Ever the scientist I kept him off school on Thursday to see what he would be like if I took school out of the equation. Thursday was quieter and what was positive is that I really picked up the vibe from him that he was bored. I bore him ( compared to school). That makes me happy! He's enjoying the stimulation of school! He's showing emotion! Anyway I digress- when we got home from collecting thea he became quite twitchy and started with the hysterical laughing. This was constant for about 20mins at which point i started to worry. I recorded him for about a minute and put the video in 2 support groups for advice. I rang my husband to get him to leave work, and the children's nurses. We were told to take him to our local hospital to let someone see him while he was behaving like this. We have to drive by the local hospital ( literally round the corner) to get to the bigger hospital and so went with the closest one. I showed the video and by this time he had been laughing weirdly over an for an hr. He had a slightly raised temperature so they gave paracetamol. A few hours later he had gaps in between the laughing and they sent us home to come back the next morning to see his paediatrician. 

Nate slept all night and had to be woken to leave the house for the early appointment. When we arrived his paediatrician wasn't available so we saw a different one- someone we have seen a few times in the community at CDT meetings. She said that our paediatrician had pretty much decided these episodes were seizures and had some "thoughts" to the cause when put together with a few hairs he has (down below), and had we been told that? Nope we hadn't. She said our paed wanted another EEG and MRI, I said this was already in hand with the neurologist. She said that she had emailed the neuro about this latest episode and that we could speak to nate's paed about it next week. I tried to explain what I really wanted to know was if he was safe during these episodes, if there was anything we should be doing, if it was causing damage. I got a blank look and "said to speak to his paed next week"

We came home and Nate had a few more dodgy episodes but they were very short. That night he seemed to do it for over an hour but as he was on his sats monitor, and bipap machine I just left him to settle as we hadn't been told to do anything. 

Saturday morning we decided that this lack of information was actually a bit scary as he was continuing to do "them" and we needed to see someone about it. We went to the bigger hospital this time thinking there would be specialists there and more experience. They were decidedly unhappy with the length of time these things were happening for and surprised that the other hospital hadn't medicated him. 

I have always needed a plan. I like a line in the sand that let's me know when we need hospital and what we can manage at home. Plans are necessary to function as a family, and for my sanity. So now we have instructions- 5mins of silliness then hospital for rescue meds. The dr was going to send us home with midazolam but said the first few times it's needed they would prefer to administer it. As it often suppresses breathing this seems sensible. All a bit worrying. 

When I read this back what strikes me is the impact not having a diagnosis makes. We never know what to expect and neither do the professionals. I have resisted writing "professionals" . No, oops I've done it. Most times when we are treated in what I consider an inadequate way, it's a result of a lack of information. The bigger hospital were very clear that, when we could, we should always go there as our local hospital can't grasp how complicated Nate is. 

However it would be nice if when

I say " I think he's having seizures" people would take me seriously and not talk to me like I'm a neurotic mother. Which I am I suppose, but with bloody good reason. 

I need to speak to his neuro's secretary tomorrow and try to sort a quick appointment. I guarrantee this won't go smoothly.