Hi everyone, haven't posted on here for a while.
My son harvey is 2 and due to the TS he has severe epilepsy including west syndrome (infantile spasms) and a heart condition. He also shows all the signs of being autistic and is about 3 months mental development and 8 months physicaly. He has just started crawling and trying to pull himself up on things.

For a while he was spasm free and just having complex partial siezures on his right side of his body and absences. Altho these were daily, they were manageable and he didn't seem to bothered by them.
but in the last 2 months his seizures have really increased and he has developed new ones.
He now has around 15 drop fits a day, sometimes its just head nods and sometimes if he is crawling he falls to the floor head first. he wears a helmet to protect him. He has started having clonic fits where his whole body jerks, he has about 3 a day and sleeps after everyone or is sick afterwards. His absences have increased and he has the odd complex partial every now and then. He has also started having spasms again every now and again.
He also does this horrible arm and leg flailing and he makes a grunting noise when he does it altho he doesnt appear to lose conciousness, there is a question as to wether these are myoclonic seizures or another form of spasm.

Everything just seems to be coming twice as strong and i dont know what to do. We see his neuro next week so i have a list of questions to ask him and a couple of videos to show him.

Harvey has been on many drugs but nothing seems to be working. right now he is on vigabatrin, epilim and melatonin to help him sleep as he is quite hyper and often fits in his sleep. he hasnt had an MRI scan since his diagnosis at 2 weeks of age and im so worried that when they do this next one the tumours have grown or spread. Im also worried that his west syndrome has developed into lennox gastaut syndrome.

I was wondering if the ketogenic diet works on kids with TSC as id far perfer to try this that go straight to brain surgery.

any suggestions or stories would be appreciated. i feel so lost at the moment.

Sorry its such a long post. just really need some advice

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