Hi there

I'm a mum of a little boy who has epilepsy but I have included kids with anaphylaxis in here too because I think my question applies to both groups. So, after that long-winded start, I will ask my questions LOL
Okay. We got a diagnosis of epilepsy just before my boy turned 3. He's 3.5 now and it's suddenly just occurred to me that he's going to kindy this year and he will (hopefully) make friends. My concern surrounds him visiting his friends at home without me. Obviously during the kinder years I will most likely be with him but what about when he gets older? Do you word up the parents that there is the likelihood of a seizure? How do you even do that? The thing is that he is controlled with medicine but there is always a chance of breakthrough seizures. Do you find that your kids are not invited out?
I know! A lot of rambly questions! The thing is that, for me, having a child with epilepsy or anaphylaxis over to my house would not phase me; word me up on the plan, give me the relevant phone numbers and the epi pen and I would be good to go. But, I realise that not every one is cool with stuff like this

Any advice? thoughts? ideas? slaps upside the head

My DD is anaphylactic. she is 8 and I fully understand your concerns about friends/playdates etc. It was a huge concern for me when she first started school. I was just very upfront with everyone she came into contact with, and I think to a large degree this makes the kids feel less like they are different, because there isn't any "shame" (for want of a better word) about it. I tended to stay with her at playdates and parties (still do) and most people are pretty accommodating and actually quite interested. I did get the odd parent who didn't "get it", but we just tended to stay away from them in the end - not people we want to associate with anyway if they are not willing to help keep a child safe. It takes a bit of time but eventually you will find a group who will be more than willing to take all the info on board. It does get easier as they get older

When your DS starts going to school, the other kids in his class should be made aware that your son has epilepsy so that they're not afraid, and know (sort of) what's going on should he have a seizure. As a result of that, the kids tend to go home and talk about it so the parents would likely know anyway. Before a playdate I would let the parents know that your DS does have epilepsy and that it is controlled by medication. I would also go with him to the first few playdates to familiarise the other parents with him, and reassure them that you would never be more than 5-10 minutes away so that should anything happen you will get there quickly. I would also offer to have the child and their parents at your house first perhaps to make them more comfortable.

Make sure you inform parents and don't ever assume they already know/remember.

We had one of ds's friends over for a visit. A few months later I found out he has an anaphylactic reaction to nuts. I had fed this child and not been told. My chn regularly have nutella at home. There's a risk of contamination of butter. If i'd known I would have been more careful.

I now ask parents if there are any allergies/intolerances.

I have another child visit regularly with anyphalacis. Parents are great with telling me what to avoid and what to do

I understand where you are coming from but I don't want him to be singled out as 'special' or 'different'. He's a normal little boy who happens to have epilepsy

I will definitely be staying with him for the first few playdates and I will never assume that anyone knows what to do. Just recently I left both my kids with a friend and ran him through the procedure. He listened intently and said 'it's okay, I'm an ER consultant, I think I will be fine!' I was so embarrassed LOL



I think you are on the money here ballistic. I am lucky that so far most people who know about it are actually genuinely interested and want to know what to do.

He won't be singled out, and it's more for his safety so that if he were to say have a seizure on the playground, the other kids would know that he's not just playing and go grab a teacher. It's also done to familiarise the kids so that they don't think he's different if a seizure were to occur.

I would highly suggest getting him a medical alert bracelet of some sort for when he is at school and separated from you.

bcbk you have given me food for thought. I am very impressed with his kinder as they have organised for a person from the epilepsy foundation to come in and talk to the staff. I might have a chat with them and see what they can do when he starts school.

Glad I could help When I said the kids in his class would be made aware of his epilepsy, I meant that epilepsy foundation people will come out! They'll also provide his teacher with information and what not as well.

I second the medic alert bracelet. Jess's says "anaphylaxis kiwi fruit, epilepsy, autism" in that order. We figure put the most life threatening one first. She does need the larger size one to fit it on, but it's no biggie. It doesn't look out of proportion.

Her school friends are aware that Jess has autism and epilepsy. Most are aware of the kiwi fruit as the school was make kiwi fruit free at one point.

When she visits friends we usually stay the first time till we know she'll be ok. We fill the parents in on her epipen and give a quick run down on how to administer it and remind them that the instructions are on the pen itself as well. We let them know not to waste time removing clothing and to go straight through any pants she might be wearing into the thigh area. We also let them know that they can't do any harm to her by giving it to her, so if they think it's needed - give it. We don't mind buying another one! We would rather they err on the side of caution than wait and wonder whether it's 'that bad'.

Most parents have been very good. We have a small school and Jess is known very well.

sandi

I have a husband that has epilepsy - I know I wouldn't mind at all having a child over with epilepsy. It's just one of those things. Kids might get sick when they are over at a playdate. He may have a seizure when he's at a playdate. I'd just talk to them about what they should do etc, whether there's a point in time that the ambulance needs to be called etc.

I grew up with an epi pen and severe reaction to bees and bullants. Think mine wasnt discovered till I was 5-6yo though. I always knew from an early age that if I ever thought I was bitten to get teacher/parent to call an ambulance asap no matter what. I also had medi alert bracelet. Now I am older I am alot slacker with carrying my epipen but I haven't been bitten in a good 10years so hoping it won't be so serious next time I am.

My DS best friend has egg allergy I know he had a serious reaction and he has labels on bags/drinks/containers etc that say no eggs with his name. I have taken him for playdates since he was 1.5yo and his mum never seemed bothered (but not sure if he has an epipen) I know his allergy and ensure he has nothing when over or if I take food to their house my kids take nothing. He's been to all the kids birthdays and I ensure everything is safe for him to eat as I know she doesn't allow him to go to parties due to the risk of him eating something with egg. He is 4 now and starting at DS kindy this year so will see if anything happens.

We also have friends from Playgroup with two kids with food allergy. One is bananas and the other is milk. I have looked after the one with banana allergy often but again mum never said anything but have known them for years and very aware of their allergy.

One of my best friends twins has allergy to nuts. He carries an epipen. He's been in childcare and starts school this year but not sure how she goes about it with school but she doesn't do playdates with them yet or leave them except with family.

I have background with epipen so that doesn't bother me as long as I am mad aware. My DS2 also had sezieres from 6mths till 15mths so have had to deal with them too so they no longer bother me either. I wouldn't have an issue with having a child over if I was made aware of condition. We had a girl (2) who was in DD dance class years ago. She had severe skin issues you could see. Come concert time she dropped her backstage to go watch and I was looking after her. All the kids were sharing food/snacks coloring together etc. At the end of the night I went to get her pjs from her bag to dress her to find a bag in the bottom full of medications, epi pens and list of heaps of allergys. Really freaked me out that her mum left her without making anyone aware of anything, she was 2yo and knowing all the kids would be sharing food etc (she had an older DD dance so wasn't new to what happens)

If my children had any conditions I would ensure they knew what to do if anything happened. But I have never left my kids for playdates till I am comfortable with the parents. Usually I organise a catch up at a local park first to make sure my kids are ok with them and for me to get to know them before I would leave my kids in there care though