Panayiotopoulos syndrome

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Gia

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My grand daughter (age 5) was recently diagnosed with Panayiotopoulos syndrome. She has had one seizure.
I am interested in hearing from anyone with a child that has this syndrome. My daughter in law is going crazy trying to figure out how protective she needs to be. Any advice would be welcome.
 
Hi Gia, welcome to CWE. This forum was made out of love by Bernard for his wife Stacy. That love permeates throughout the whole forum.

I found a link that will give you more information:

https://www.epilepsy.org.uk/info/syndromes/panayiotopoulos-syndrome

I hope this is helpful. I am sorry that your grand daughter has epilepsy. There are other names for it that is in the article I gave you.
 
Hi, Gia. I don't know whether you'll find parents with children who have that specific syndrome, but you will find parents who have children with idiopathic focal epilepsy, as your daughter has. And you'll also find many members with seizures that, at the very least, do affect the occipital lobe, so I think you'll find more than enough information here.

I'm not a parent but I do have epilepsy and I believe that the single most protective thing you and your daughter in law can do for your granddaughter's epilepsy is to educate yourselves. Get to know the symptoms of all the different seizures, get a thorough understanding of status epilepticus in every one of those seizure types, so that you can take action when seizures go on for too long. A medic alert bracelet is always a cushion, in case you end up in a situation where you can't remember what medication she's taking and she needs to be treated in an emergency.

As I say, I'm not a parent and other parents will give you more solid information, but take preventative measures. The most important things, off the top of my head, are either supervised bathing or showering (decide if you need to turn the temp of your water heater down), removing access to stoves and anything that could cause burns, and softening up any hard floor surfaces with carpets. Basically, fall-proof your home. Other than that, and any other preventative changes others will advise, and getting to know when seizures become dangerous, I don't believe neurologists like to get excessive about helmets and that sort of thing before there is a very real need.

For me, it has been imperative that I change my home so that it's safe in case of seizures, and then let go and forget about it. I cannot live my life in fear and I think it's important for all of us who have epilepsy, even the youngest, not to develop a fear-based life because of our disease. Epileptologists and some neuros are sometimes highly specialised with dealing with children's cases, and should be able to give you all plenty of advice about safety and day to day living. Don't be scared to ask all the questions you like in the doc's office.
 
PS syndrome

Thanks for the advice. My daughter in law has already stopped tub baths for Delilah. She is getting showers only. If she plays on a playground, she has to have an adult with her if she gets more than 5 feet above the ground.
I believe she has ordered a medic alert bracelet.

I will check out the links.
 
I just want you to know that I just let my 16-year old daughter with epilepsy take a 25 hour flight to Thailand so that she could participate in a 3-week service learning program there. This despite the fact that she had had a seizure just 3 1/2 weeks before her program started, and we had just started a new medication a week before she left (long story which I am planning to write up for this board soon). Of course, we made that decision in total communication and alignment with her neurologist and the program. Her neurologist was AMAZING and helped us to find a solution that we all felt comfortable with. She's been in Thailand for a week and is having the time of her life (she sent me a picture of her riding an elephant yesterday!).

The reason I say this is that we need to show our children that they can lead a full and active life, and that epilepsy does not need to stop them from reaching their dreams. So be sure that you are all walking the line between being appropriately cautious and being over-protective. Where this line needs to be drawn will depend on the age and temperament of our children and on the type of epilepsy that they have - but I think it is vitally important that we not let our fear smother them. Otherwise they will become unnecessarily fearful as well.

When your child is diagnosed with epilepsy it is terrifying and life-changing. I wish you and your daughter-in-law all the best as you navigate these waters.
 
There is a difference between your 16 year old daughter and a 5 year old child.

I am 71 years old and I take precautions for myself. Not to restrict my life, just using common sense.

I have guard rails on my shower. You will have to adjust them to a 5 year old.
I took out the glass shower door and put in a plastic lining. Unless you have money, you might not be able to afford to take out hard word floors. Linoleum isn't all that soft and that is the only altertive for hard wood floors.

You can give her a shower on a shower chair. You can buy shower chairs at WalMart. I have one in case I feel dizzy.

My mother protected me without over protecting me when I was 6. She let me live a normal life. I still am as much as I can.

Just use common sense and keep an eye on her and let her be a child and play with toys.
 
Ruth said:
There is a difference between your 16 year old daughter and a 5 year old child.

...

My mother protected me without over protecting me when I was 6. She let me live a normal life. I still am as much as I can.

Just use common sense and keep an eye on her and let her be a child and play with toys.
Click to expand...

In the end, your point is exactly the one I was trying to make. Of course there's a difference between a 16-year old and a 5-year old! In no way was I suggesting that she do the same things with a 5-year old that I would do with my 16-year old. However I think the principle is the same: try to relax, take common-sense measures and let them be have as normal a childhood as possible.

It sounds like your mother did a great job finding that balance. As a parent of a child with epilespy, I commend her - that is not easy to do.
 
I commend my Mother too.

I raised 2 children with epilepsy myself. It is hereditary in our family. It was not easy for me to strike that balance, either. I was not a perfect mother, and they are not perfect children. I never expected perfection but I had rules so they could decide right from wrong.

I am sorry if I am too tired. I probably didn't put it right.
 
Thanks for the encouragement. My five yr old grand daughter will not be riding an elephant any time soon, but I know she would LOVE to do it!
Perfection is not required of anyone. This is all still new to us, and we are feeling our way along. I wish the epileptologist had been more forthcoming with practical advice!
I have learned a lot from the forum here.
 
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