Hello

[Lisa B]

Hi I am Lisa and I have a gorgeous little girl who has epilepsy and other issues, I thought I would join a forum to gain friends and advice on epilepsy. As we all know it is a complicated thing and changes daily.

[BuckeyeFan]

Welcome to our house. Have a seat and get comfortable. It sounds like we may be just what you are needing.

I myself am a 47 year old with epilepsy. However, there are many mothers in a similar situation as you. You should be able to find plenty of info and support.

[Bernard]

Hi Lisa B, welcome to the forum.

Make yourself at home here.

[Georgiagirl88]

Hi Lisa,

Glad you're here. Hope your little girl is doing well. This site has been wonderful for me. So informative and supportive!! I am a 41 yr. old Mom of 2 teens and I was finally diagnosed with Epilepsy after yrs. of misdiagnosis.I think you will find great info. and support here as well!
Take care!

Michelle (Atlanta) : )

[hawke86]

Lisa welcome to the forum. I hope we can help you. I hope you enjoy your stay.

[tinasmom]

Welcome Lisa -

I am raising my granddaughter, Nicole, who was diagnosed last August with Epilepsy. You will find a lot of answers, help and shoulders to cry on here.

[RobinN]

Hi Lisa, WELCOME to CWE!

I am a mother of a 16 yr old that had her first seizure at the age of 14. Hormones have a lot to do with her seizures. You are definitely at the right place for learning.

If you have questions don't hesitate asking.

[skillefer]

Hi Lisa ! Welcome to CWE. As you can see, we've got lots of parents here with kids who have epilepsy. It's a really friendly group, so feel free to ask questions.

[Lisa B]

Thankyou all for a wonderful welcome, not having such a great week. we have been to the hospital three times last wk and now have buccal medazalane to administer when required.Has anyone any advice on this as I am slightly nervous about the whole thing.
Best Wishes Lisa

[brain]

Lisa!

Welcome to CWE and make yourself a home!
And you'll find plenty of folks around here;
and lots of resources, information, and a
whole lot more here!

[brain]

Buccal Midazolam:

Edited to add - I have found information
for you from a Neurosurgeon in the U.K.,
and scroll --- the information is all there
for you.

[Lisa B]

We have been prescribed this by Rosie's consultant to keep at home and at her school, all the relevant people have had training in the administration of this drug and hopefully it will do some good. It is all a bit scary though as i have had dreams that i cannot find the keys to the medicine box, silly or what.Lisa B x

[skillefer]

No...not silly. We all have a tendency to think "what if?". My suggestion would be to make multiple copies of the key to the medicine box. Put one key in each room. That way, you're always near a key.

[RobinN]

I don't know anything about it.

We were given ativan for emergencies, but I left it at home, because I couldn't see how a school administrator was going to get it in her mouth to make a difference. I would rather at that point she be calling 911 and get the professionals there.

[brain]

Since I am not sure what Country you are from,
however since this isn't typically used in the
United States, but I did get a hold of the
Neurosurgeon from United Kingdom and he provided
me this link for you to read up on

Buccal Midazolam - for Pediatrics/Children (United Kingdom)

Buccal Midazolam

This information should be read in conjunction with any patient information leaflet provided by the manufacturer. This fact sheet explains about buccal midazolam, how it is given and some of its possible side effects.
What is midazolam?

Midazolam belongs to a group of medicines called benzodiazepines, which are used to treat a number of different conditions. One of these is status epilepticus. Status epilepticus is a condition where a person has a seizure (convulsion or fit) or a series of seizures that last for 30 minutes or more, without a complete recovery of consciousness. If a seizure lasts for more than five minutes, it may be difficult to stop unless treatment is given. It is therefore important that rapid treatment is given to stop the seizures and therefore prevent status epilepticus.

Midazolam is chemically related to diazepam, which is another medicine used to treat seizures. In emergencies, diazepam is often given by the rectal route. This can be useful in many situations, but at times, it may not be convenient. In situations where it is not acceptable or convenient to use rectal diazepam, buccal midazolam becomes necessary.
How is it given?

Midazolam is available in various forms as follows:

* The buccal route is where the medicine is placed against the sides of the gums and cheek. The medicine is absorbed directly into the bloodstream. The medicine does not need to be swallowed, but if swallowed accidentally will cause no harm.
* Midazolam is also available as an injection (10mg in 2ml) in a glass ampoule. This product is used to give midazolam by the buccal route.
* It is also available in a preparation called Epistatus®, a sugar-free buccal liquid. The strength is 10mg in 1ml. There are four 10mg doses in each bottle and four syringes are provided with it.

Instructions for giving buccal midazolam

* Your local medical team will train you how to prepare and give buccal midazolam. Always check the dose and expiry date before use.
* Give the medicine slowly as your child could choke and swallow it if given too quickly. If a small amount is swallowed, it will cause no harm.
* If buccal midazolam does not control the seizure within five minutes, follow the advice given by your doctor or call 999 for an ambulance.
* If you cannot give buccal midazolam for any reason, give first aid and call 999 for an ambulance.

Using a midazolam ampoule

1. You will need the following equipment:
One ampoule of midazolam
Ampoule snapper
Two filter straws
One oral syringe
2. Attach the filter straw to the syringe
3. Hold the base of the ampoule in one hand and break off the top using ampoule snapper
4. Put the filter straw into the ampoule and draw up the prescribed amount of midazolam. The filter straw will remove any particles.
5. Place the syringe into the side of your child’s mouth, between the gums and teeth
6. Slowly push the plunger of the syringe down until the syringe is empty
7. If possible, divide the dose so you give half into one cheek and half into the other cheek.
8. Watch for any breathing difficulties
9. Confirm that the seizure has stopped
10. Dispose of the broken ampoule, syringe and filter straws safely

Using Epistatus®

1. You will need the following equipment:
Bottle of Epistatus®
Syringe
2. Check that the liquid is clear with no crystals visible. Discard if you can see crystals.
3. Unscrew the bottle cap, keeping the bottle upright
4. Insert a syringe into the centre of the stopper
5. Turn the bottle upside down
6. Pull the plunger of the syringe back slowly and then push back to prevent any air bubbles
7. Pull the plunger back again slowly and draw up the prescribed amount of liquid
8. Turn the bottle the right way up before removing the syringe
9. Put the cap back on the bottle to stop spillages or evaporation
10. Place the syringe into the side of your child’s mouth, between the gums and teeth
11. Slowly push the plunger of the syringe down until the syringe is empty
12. If possible, divide the dose so you give half into one cheek and half into the other cheek.
13. Watch for any breathing difficulties
14. Confirm that the seizure has stopped
15. Dispose of the syringe safely

What are the side effects?

* Drowsiness and sedation – recovery is usually fast
* Amnesia or short-term memory loss – your child may not remember having had a seizure
* Breathing difficulties – your child is unlikely to have breathing difficulties if midazolam is given at the correct dosage. If breathing difficulties do develop, seek medical assistance.
* Restlessness, agitation and disorientation – these can occur but are usually rare.

Important information

* Give the medicine as prescribed by your doctor.
* Your child may also have been prescribed rectal diazepam. Remember that either buccal midazolam or rectal diazepam can be given to stop a seizure but not both.
* If your child stops using midazolam or it passes its expiry date, please return it to your pharmacist. Do not flush it down the toilet or throw it away.
* Keep midazolam in a safe place where children cannot see it or reach it.
* Keep midazolam at room temperature (not in a fridge), away from bright light or direct sunlight and away from heat.
* Always check you have enough medicine and remember to order a new prescription in plenty of time.

Useful telephone numbers
(United Kingdom Only)

Great Ormond Street Hospital
GOS switchboard: 020 7405 9200
Clinical Nurse Specialist – Complex Epilepsy: ext 5816
Pharmacy Department: 020 7829 8680
Pharmacy Medicine Information: 020 7829 8608

The National Centre for Young People with Epilepsy
Tel: 01342 832243
Fax: 01342 834639 Email: info@ncype.org.uk

[Lisa B]

I forgot to say I live in the United Kingdom in a little county called Cornwall right at the bottom of the country, lucky me beaches surround me and it really is a lovely little part of the world///

[hawke86]

Lisa,
I hope you're enjoying it here. Lucky you how beaches surround you.

[brain]

I forgot to say I live in the United Kingdom in a little county called Cornwall right at the bottom of the country, lucky me beaches surround me and it really is a lovely little part of the world///

Interesting ~ had to turn to some qverseas Epileptologists
and Neurosurgeons because I figured you were from overseas,
and the first to respond was from United Kingdom.



I also reside and am surrounded by beaches, I live in the tropics.

[stilldancing_98]

They have great Drs. there. My brother and sister in law just moved from London to New York about a year ago and they needed a neurologist-oncologist and all I did was send an e-mail and they had them in there within a day or 2. A russian doctor to. Welcome Lisa. My name is Teresa. I have had epilepsy since I was 10 and now I have a 10 year old with epilepsy and other issues. It's hard. I know. But this place is so cool. I think you will find the support you need. I have. There are some good people here. Teresa