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Bloody seizures.

(6 Posts)
Cathaka15 Fri 19-Aug-16 18:26:20

Dd14 has Rett syndrome. She's been having seizures for the last 5 years and is on meds for them. They are not controlled. She has severe cluster seizures nearly every day. She went off for her short break today and had a seizures on the m25. Ambulance called and emergency meds given. What a nightmare. I'm end of my tether with this whole fucking seizure thing. Oh What to doconfused angry

Blueskies32 Sun 21-Aug-16 22:08:22

Hi, sorry to see you didn't get any replies, i usually lurk but wanted to check- how is your daughter now? Gosh it must be so so hard for you. flowers
How long have they been uncontrolled for? I hope they find something that can help control them better soon. NB There is a closed Facebook group for epilepsy related support that might get more traffic/people who understand.. its called ESUK (epilepsy sucks uk) let me know if u want me to try and add you.

booksandcoffee Sun 21-Aug-16 22:19:05

Hi, sorry to hear that you and your daughter are having such a tough time. flowers

I have a long history of epilepsy, though it is now controlled by Meds. There is hope. One tip that a friend unwittingly taught me is what could be described as going with the flow.Sometimes I get auras and I resign myself to the prospect of a seizure. I used to try to fight them off and ultimately they would still happen and be worse for it. Now the auras just pass. This is by no means a medical solution, just an anecdote, but I recommend your daughter trying it. I guess it is based on the fact that tension and anxiety were always at the root of my seizures. Good luck.

Cathaka15 Mon 22-Aug-16 08:00:42

Thanks so much for your replys. She totally holds her seizures in and yes they are even worse when she does. She's been away on her break and they've told me she's been having a great time with no seizures. shock Will pick her up today and see what the day holds. Never heard of ESUK but will check them out. Thank you.

Olympiathequeen Wed 24-Aug-16 18:15:28

I'm sure at some point you will be told about the keto diet. It's only for children with uncontrollable seizures. It's difficult but can be life changing.

Cathaka15 Thu 25-Aug-16 23:29:15

That's probably our next step. The keto diet. I'm dreading it but at the same time praying this will be the thing that changes everything.

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