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Status Epilepticus
A MyEpilepsyTeam Member asked a question 💭

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.

posted 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

posted 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.

posted February 26, 2023
A MyEpilepsyTeam Member

I've never dealt with a kid with epilepsy just myself. See if her doctor would give you a concentrate (liquid) RX of diazapam or lorazapam and educate you on the dosages for her seizures. It can go either way with seizures if they get controlled or not. Prayers for you and that precious baby.

posted 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.

posted 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 👏

posted February 26, 2023

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