So the epilepsy thing. The big E. Seizure Central. Nope....still can't connect to it.
Louis' autism diagnosis was NEVER a shock for me. I was at that Developmental Paediatrician's office looking for confirmation of what I was already sure of. Because Louis was born 2 months early, I was on the look out for developmental problems. Said problems reared their heads very early on, and Dr Google put all the pieces together.
But this seizure business. It has totally blindsided me. Not just that, but I am just feel extremely sceptical.
I had been concerned about the excessive jerking and twitching that Louis does as he falls asleep. He seriously falls asleep twitching like a dog dreaming of chasing rabbits. The neurologist believes these are benign myoclonic jerks.
Great! That is fantastic. That was my only concern about seizures. But then this sleep EEG that Louis had totally refutes that diagnosis. I was there watching the screen as Louis jerked around as he went to sleep. Every time he did, those lines went apeshit, spiking all over the shop. So the EEG comes back abnormal, with seizure activity but the neurologist holds strong with the benign myoclonic diagnosis. He is concerned that Louis is having atypical absence seizures in the day and some other kind of seizures at night. Like late in the night, as in waking him up.
My personal belief is that Louis is just "disappearing" to process information, and this appears to look like absence seizures. He may not answer his name, or respond to waving a hand in front of his eyes but he does seem to snap out of it with some help. I can't honestly say I have any idea of what is happening at night, except that I have not witnessed anything when Louis sleeps in my bed.
Anyway, we are going ahead with the 24 hour EEG in May. That should be a bundle of fucking laughs. One thing for sure, I will not be beginning with Epilim as the first port of call. This was tentatively suggested as an option, if Louis was not able to handle the 24 hr EEG. Not an idea that I am comfortable with....not when I have no idea when these supposed seizures are happening. How would I know that the medication was working?
Bottom line is.....if I had to put $100 on it, I would bet the lot that Louis is not having seizures. Although this is my gut feeling, we will of course follow the neurologists suggestions to confirm the initial EEG results.
Maybe someone will read this and shake their head at my blinding denial.
At this point, I am hoping it is simply a case of healthy skepticism.
4 comments:
My cousin's daughter has Petit-Mal seizures which are the absence during the day type you describe. She is not Autistic though so she isn't deisappearing to process stuff. My friends daughter has Epilepsy and she has all sorts of different toyes of seizures at different times of day including the Petit-Mal type. She is also not autistic. It is quite common with childrenwho had a traumatic or early birth.
I think it is natural you would want to deny this one for as long as possible and I am with you on the investigating as much as possible.
What I would say is that Epilepsy is painful and if it looks like being that then the kindest thing is to medicate in some way.
If it isn't then you have done your job as a good mum. Actually, if it is then you have still done the right thing by making the doctors investigate as much as possible because you will be more likely to get the best start with whatever treatment you go with.
Hi Annicles. I will definitely medicate when I have the confirmation. Even though my gut reaction is to stick my head in the sand, I would never actually consider doing this when Louis' health is concerned. I was wondering though in your comment, are petit mal seizures painful? I imagine that myoclonic, tonic, grand mal etc would be. I have never seen anything like this happen with Louis. Thanks for the reply x
Petit-Mal give you a head-ache, particularly if they happen often. My coun's daughter, who is now 24, had a period of time when she was zoning out every hour or so and she was on constant painkillers.
My friends daughter is on the Ketatonic diet and has not had any type of siezure for about four years but the diet is very restrictive. If Louis is a fussy eater it won't work because it is weighed out by the gram. There is no room for not fancying something that day.
I have heard about this ketogenic diet. Louis is an exceptionally fussy eater, so it may be difficult. If it comes to it, of course I will give it a shot though. Thanks for the information Anna.
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