Panayiotopoulos with 14 yo daughter

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Vejelin

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Just recently diagnosed with panayiotopouls syndrome andcput on keppra to lessen or stop the occurrence of seizures.
Long story short .. wife and I are currently divorcing and she has had her this initial week of diagnosis and starting meds. It is now my turn to care for my daughter and while her mother and I communicate, her family tends to over react to situations such as these. I will do anything my daughter needs but am seeking experienced veteran advice on actons during an episode.
Most occur during the day not at night .. that I know about.
No vomiting .. usually just muscle spasms in right arm , leading to neck .. head .. eyes and mouth. She has experienced on full body type of this and was taken to ER and really no treatment given other than meds for a bad headache.
These headaches seem to precede the episodes and often when treatment for those is given it limits or stops them from occurring.. according to my daughter.

What I would like to know is treatment when these come on .. right now her mom says to call ems .. what do some experienced parents here have to offer ...

Thanks for any and all advice !
 
In that case not help.but if you Google st piers children with neurological illness you may be given what's on offer in your country
 
Do You Need To Call EMS?

If you look at the different sites that teach first-aid for people who are experiencing a seizure you will find that calling EMS isn't high on the list of what you should do to aid a person w/E. EMS only needs to be called in a case of emergency. You need to learn the first aid procedures and decide what the best way to handle the situation is.
Your soon-to-be ex-wife seems to be taking the easy way out by calling EMS anytime and letting them handle the problem. Her actions are telling me that she isn't able to handle the problem herself and she to hand-off the responsibility by calling in strangers to do what she should be able to do. You can only imagine how scared your daughter would be if she suddenly woke up in an ambulance with strangers around her! She should be able to feel safe in her parent's care and know that her parents can handle her problem. Anything less than that could possibly cause her stress and stress is the LAST thing that a person w/E needs in their life!
You just need to google 'first aid for a person during a seizure' and you will find several sites that list what you need to do or they may even offer CD's that can show you what is necessary!
I think you need to make your soon-to-be ex realize that she could be doing something very unnecessary to your daughter. If your daughter continues to be taken to the ER she could get the feeling that her E is much worse than it probably is. This would happen because she was constantly being taken to the ER and not taken care of at home unless it's an emergency. This could make her think that she has a problem that is so bad that it can only be taken care of in the ER. :twocents:

acshuman
 
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Person asked if I was in GB...

Thanks acshumsn.. that was my thinking all along
It has been stated that of seozires last longer than 5 min that your supposed to seek emergency help.. some of hers last 20min..all we have is a prescrip for keppra
 
The soon to be ex wife was following instructions per the neurologist with 25 years of experience that told ME to call EMS if her seizure lasted longer than 10 mins.
 
Experience Is The Best Way To Determine Seriousness

I know you are new to the E world so all I can tell you is that you need to watch your daughter when she is having a seizure to be able to determine if EMS is needed. Some people have seizures that can last up to 25 minutes and not be any more dangerous than a seizure someone else may have that only lasts 2 minutes. This is why you have to learn as much as possible about what happens during your daughter's seizures. This will help you know that she is OK or needs professional help. You will gain this knowledge by viewing the seizures and NOT jumping the gun when calling EMS.
I can only say that over the 50+ years I have had E I have never before heard a doctor tell someone that the best thing to do is call EMS. If any of my doctors had said that to me I would Have said 'Well, this is the last time you will be seeing me if you can't give me any kind of advice other than give up and call EMS'. This also tells me that he/she probably doesn't have the ability to handle a case. He/she sure isn't thinking of your daughter when he/she said that because being taken to the ER by ambulance would sure have a negative effect on your daughter's psyche! This tells me that that doctor is only thinking if his/her self and NOT your daughter! There are too many doctors today who would rather hand out pills instead of really diagnosing what can be done for a person while they are having a seizure. This doctor(?) also wants to hand your daughter's problem off to the EMS people to handle.
I would definitely get a second or third opinion from some other doctor(s)!
If all you do is call EMS you are going to go broke paying the bills that will be run up. I have had to declare bankruptcy twice because of the huge ambulance bills that were built up after unnecessary trips to the ER when strangers called EMS when I had a seizure in a public place! I sure wouldn't do that to myself by calling EMS every time I had a seizure! :twocents:

acshuman
 
When you have a seizure, do you lay on your side and then just wait for the episode to pass? She has had two and one of them was at her pediatricians and they called the EMS to get her to her to the hospital where her neurologist works. No sirens were involved it was just to transport. The second one I called 911 because it presented different than the first one. We are all new to this so we are still learning. I do work at a school and under first aid training we were told to call 911 if a seizure lasted for longer than 5 mins.
 
EMS After 5 Minutes?

This is the big question! The fact is that this is why you need to learn how your daughter appears while she is having a seizure and how long it takes to take place. You need to time how long her seizure is. You call EMS if her seizure is longer than 5 minutes only if that is longer than the normal time it takes for her to complete a seizure. This is why you need to learn as much as you can about the normal length of her seizures. If she normally has seizures that are longer than 5 minutes there is no need to call EMS.
I know of some people who have seizures that last over 20 minutes on average so they don't need EMS called after just 5 minutes. YOU and your soon-to-be ex need to learn this and keep in contact with each other(you have to work as a team to help your daughter) about whether or not her seizures may have changed because there can be change at any time in a person's seizures. This is why you will become more and more knowledgeable as to when help is needed after more seizures occur. It will become almost natural to be around the person having the seizure. This is why both you and your ex need to grow some thick skin and learn to put up with what is happening with your daughter because your understanding can be a huge way of supporting her after a seizure! You both are going to be very nervous now, but you will learn that you both have to show that you are strong enough to help your daughter! :clap:

acshuman
 
Hi juljaclin,

Welcome to CWE! Your daughter is at an age where she's growing up and her hormones are changing a lot this in turn can also trigger seizures for her. The PS she has often causes seizures to last for 20 minutes or longer and the seizures are coming from the optical lobe of her brain and can sometimes can start on the temporal lobe also.
If your daughter is under a lot of stress do to you and your ex wife this in turn will cause a lot more seizures for her, I know that from experience when my parents divorced I had a lot more seizures. I got the best help when I started seeing an Epileptologist and since then my seizures have reduced greatly and I'm on the least amount of meds. Have your daughter try taking vitamin B12 once a day that calms the nerves down for many people and in turn can sometimes reduce the seizures. Going to the ER each time isn't going to help, the Dr needs to get her seizures under control so you may want to get a second opinion. I wish you and your daughter the best of luck and May God Bless the both of You!

Sue
 
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