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Status Epilepticus

A MyEpilepsyTeam Member asked a question 💭
Mongolia

My 5 year old daughter was diagnosed with epilepsy last year. She's been having seizures every 1-2 months since then. But when she has a seizure, it never stops on its own. Every time, she has to go to the hospital and receive diazepam injection. Is there any other person with similar conditions? Will it get worse with time? I'm so worried.

February 26, 2023
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A MyEpilepsyTeam Member

Hi Angela we are from the UK and my daughter is now 37, Jenna has status epileptica and for years was on diazepan, but now has midazelam, it's in a syringe but has "NO" needle it's just easier to give in the mouth. I am not sure if you could get it but worth an ask. Ah I have just seen on the box it's for 10yrs to 18yrs but Jenna still on. It's worth exploring though because there are lots of other options out there it took years to get this far with jenna. keep asking and good luck.
Jenna and Lynn x

February 26, 2023
A MyEpilepsyTeam Member

Thanks all for answering my question. Unfortunately, in Mongolia lorazepam pills and midazolam are not available. We can't get diazepam outside hospital either.

February 26, 2023
A MyEpilepsyTeam Member

My doc gave me a prescription for a nasal rescue diazapam a mere $200 I told the pharmacist no thanks.

February 26, 2023
A MyEpilepsyTeam Member

Hi there. I was similar before surgery. But I would have the diazepam on me at all times and those around me would give it to me by mouth. Wishing her the best 👏

February 26, 2023
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A MyEpilepsyTeam Member

Not me but I know someone who has a relative with epilepsy. This person was seizure free for a long time then on Christmas day it started again. Every time they have them they come in clusters of up to 5 seizures I'm not too sure how long each one lasts and what they are exactly but I think they may be TC.

Just to give you some background on my last seizure. My last one was 2 minutes. (from what I was told) No epi-pen was needed. I was in the hospital to recover for just under 3 hrs. The worst days were the first three but I'm 2 months on and now my headaches are worse, head spins are getting better, and my memory is a lot worse than before. I also find I'm now a lot more sensitive to heat.

February 26, 2023

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