Seizures have come out of nowhere so fast and furious

[josey]

Not has a seizure since NNU, on clonazepam for slight twitches.

Just before easter weekend DD woke with a slight tremmor, phone consultant asap thought meds needed increased but she was out of office, and as Easter weekend looming said to go the Assessment unit.

Got there at 11am by 3pm DDs eyes were amber and you could have run lightbulbs from her toes she was away.

Rushed to HDU after and EEG that no one really needed to wait for results of. Started on Phenitoyne(sp) seemd to help then started Sodium Valporate plus increased Clonaz.

Now Seizures are very cluster like and are 5 secs or so she turns head to the side and eye flick very fast. She can go in and out for half and hour or so, they dont effect breathing or anything so they dont want to rescue.

Anyway 2nd EEG showed they have got worse she has hypsnorythmia(sorry no idea how to spell it) so started on steroids, 3rd EEG yesterday showed she is still have loads of seizures even though you cant see them. No change in breathing, eye flicking nothing. They have decided to leave her on the steroids for a bit longer, but thats it. I assume from the EEG there is a difference and thats why they are continuing, they did say it might take a bit longer?

Help,At my wits end, any words of wisdome?

i dont understand why they dont want to use rescue meds. I would personally and I know my paed/epilepsy team would too. Do you have rescue meds that you could use at home and see if it works. It sounds like she is in non convulsive status (seizing constantly but cant see it) and you would def use rescue meds for that. What about a 2nd opininion?

She will be 11months next week, they havent said they are IS yet so im really not sure,One Neuro did say IS can be mistaken for something else so whether that means its IS or not? They just said its complex and harder to control. She is getting Prednisolone through her PEG just now, I feel so helpless that she is having them and I cant see them. The have all said they are confident they will get it under control and there will be no long term effects

They dont want to use rescue as she is in and out of the seizures in seconds, the rescue is just putting her to sleep and not stopping the seizures, she is at higher risk doing a rescue from being ventilated. They have said that she is currently under no danger from the type of seizures and we would be administering rescue every hour basicallyPlus the clonazepam does the same kind of thing and she gets that 3 times a day. I have Buccle Madazalam(sp) at home but only to use when she is in grand mall.

Thank you Riven, I know you unfortunately know so much, it is good to hear from you IYKWIM.
We managed to catch the hyps really quick, It wasnt there on the 1st EEG but was 6days later 2weeks from then it showed alot still going on but thats all they said.
I will see what her Consultant says on Tuesday, a few of her abilities are showing up again so that must be a good sign?!

I feel so bloody useless its so unfair on her

How are your DDs seizures just now? she started a new diet?

Thats brilliant the diet is helping and she is bright and alert again. Thats was saddens me with DD just now she just seems spaced on drugs or away with seizures.

I was told to expect the seizures due to brain injury also, I just keep telling myself we were luck to have go to 11 months Hopefully her movements will start to improve a bit more. Well I can only hope.

See what info I get from dds straigh talking consultant, I never thought I would look forward to seeing this woman, she has turned into a god send over the last month.

Thank you thats good to know, starting to wonder if I can remember what my baby was like before!

sorry to read yr update josey. Hope stuff settles down soon

Thank you Pixiemason

Ok so today they have decided that as she is only on 2mls sodium valporate and can be on 4.5mls for her weight twice a day. They we will increase this over the next 2 weeks to get her to highest level.

In two weeks they will reduce the steroids, they think they have helped with something in the back ground but arent doing what they hoped.

No change in two weeks and we have to try another med.

Pead consult on discussion with Neuro said Neuro wants to treat her clinically not by EEG I think this is due to the damage in the brain and her natural brain activity can show spikes. Does that make sence to anyone?