Son is almost 3 and was dx with infantile spasms at age 5 months. Hes been sf for 18 months and med free 6 months and all has been well.
On friday whilst with grandparents he had a strange moment. He went very pale and absent for a few moments....like an absense seizure. They took him to hospital as advised and he had one more of these episodes at the hospital. THey kep him in overnight for observation and nothing since.
His EEG showed no seizure activity and bllods all came back normal so no one was able to help us understand what has happened.
We have an appointment with sons neurologist in 2 weeks an will discuss further with him obviously if it happens again we will take him back to hospital.
Im so scared of DS developing LGS and this is in the back of my mind.
My son had infantile spasms at 5 months too and he was then diagnosed with an mri scan with Agenesis of the Corpus Callosum (band of fibres that connects the two hemispheres of the brain is missing). He has been on medication on and off for 15 years now for epilepsy and I've lost count of the amount of EEG's he's had too! All of my son's EEG's have shown activity thats not normal so I dont know what to suggest. Fits can take on so many different forms, my sons's used to be like wide eyed and vacant (king kong's just come into the room) then 1 minute later he's back with you, no shaking - just not his normal body language.
It's good that you have an appt soon with a neurologist - he should be able to answer a few more questions for you.
One thing I would say is that you are his MOTHER and you know him best, if you are not happy with what the dr's say then press for a second opinion, our wonderful red books for the children say we know our children best so make sure they listen to YOU.
couldn't not answer this Louro (wasn't planning on returning to mumsnet. Posting under a friends nickname). dd satrted having seizures again at 3 and the EEG showed slow spike wave complexes starting in the damaged regions of her brain that could have indicated she was developing LGS. We started a course of ACTH that evening to prevent LGS developig. Rather controversial as ACTH is such a severe drug and she didn't have LGS but her neuro and her doc (her neuro is Andrew Lux who has worked with Dr Ohtahara and other neuro's experts in the rarer catastrohpic epilepsies). They put her on a 2 week regime and at the end all signs of slow spike wave complexes have vanished. They have never come back despite a fair few complex partial seizures, some status epilepticus and hundreds of myoclonics each day. She has EEG's every couple of months to watch out for LGS and will be starting the ketogenic diet to clear up her EEG a bit and prevent LGS. So far, her intelligence remains normal (some delays due to such severe CP and blindness) Just wanted you to know that aggressive treatment can stop it developing.