4yr old diagnosed with epilepsy

[MaisieM]

I'm looking for some advise regarding my 4 year old daughter. She has recently been diagnosed with epilepsy. Her most recent seizure was late at night in her bedroom was only by luck that i went in to check on her and found her having a seizure.

Ive been really worried leaving her in her room incase i miss anything and she ends up hurting her self.

Ive been told epilepsy monitors are not very good and often set off false alarms. Somebody suggested a baby monitor... Does anybody know what baby monitor would suit this situation?

Also if anyone else has children with epilepsy and what other safety measures have you taken?

Any advise would be really helpful

Thank you

[tzijlstra]

Hi MaisieM,

 

Sorry to hear about your girl, my cousin in the Netherlands suffer(ed, it is now under control) with epilepsy and the folks at the Dutch Epilepsy center were brilliant in advising my family on things to do/not do. I would recommend getting in touch with the Epilepsy Society if you haven't already.

[Hesther]

Sorry to hear about your daughter. It must be very worrying for you. I would think if you could get padded safety guards to run along the side of the bed, they might be a good idea. I think the baby monitor is a good idea, and/or perhaps a webcam.

 

Have you considered getting a child-friendly dog? I only suggest this because I have heard from a couple of different people who have family members that suffer from epilepsy, that the family dog can often spot when the family member is about to have a seizure, before anyone else is aware, and barks to sound the alarm.

 

The dog could have a bed in your child's room.

Edited March 7, 2016 by Hesther

[MaisieM]

Hi Hesther. My Daughter had wooden bed guards built on her bed and on her seizure on tuesday night she was hitting her head on the wooden guards. I've now took them off. i can't find a bed guard that is fully padded. I can only find the fabric ones but they still have a pole in them that isn't padded.

 

I have thought about a dog but i already have a dog who is very old, now blind and she doesn't get along with other dogs.

 

Need to find something I'm waking up every hour to go in her room and check on her. There are so many different baby monitors with webcams i don't even no where to start. She is usually sick before a seizure so I'm relying more on the sound of her being sick to wake me up but webcam would be useful also

[medusa]

Hi MaisieM

 

I'm sorry to hear about your daughter's diagnosis; it must be a very worrying time for you. Does she have seizures during the day as well as at night?

 

One of my friends has night epilepsy and that means that she takes a completely different pattern of medication than someone who has seizures around the clock, but it means that she's a lot les sedated by the medication.

 

I also know 3 people whose children were diagnosed with epilepsy at a very young age whose children are now adult and who now officially do NOT have epilepsy as they appear to have just grown out of it, so please be reassured that this is not necessarily going to be a full life of medication.

 

I'd consider getting a video monitor for her room, so that you feel confident leaving her there any time of day. Some people are so quiet whilst having a seizure that you may not pick it up on an audio monitor from another room by itself. I'd also say that I'd rather have 100 false alarms than miss one seizure, so an epilepsy alarm may still be preferable.

 

And yes, I'd also look into getting a sensing dog, but please don't just go and get a dog because some dogs have the ability and some don't. One of the charities which finds, trains and pairs sensing dogs with families and epilepsy sufferers is in Sheffield, and all of the dogs that they train up are chosen from pounds and rescues, so they are already doing the selection for you and giving the dogs a second chance of a forever home at the same time

 

https://supportdogs.org.uk/

[Hesther]

Can't you go to somewhere like B&Q/Screwfix and buy some of the foam type insulation that they sell to go around pipes and put that around the poles? Failing that, may be buy a couple of well-padded headboards and secure them around the bed?

[medusa]

Hi Hesther. My Daughter had wooden bed guards built on her bed and on her seizure on tuesday night she was hitting her head on the wooden guards. I've now took them off. i can't find a bed guard that is fully padded. I can only find the fabric ones but they still have a pole in them that isn't padded.

 

I have thought about a dog but i already have a dog who is very old, now blind and she doesn't get along with other dogs.

 

Need to find something I'm waking up every hour to go in her room and check on her. There are so many different baby monitors with webcams i don't even no where to start. She is usually sick before a seizure so I'm relying more on the sound of her being sick to wake me up but webcam would be useful also

 

If you can't find a padded bed guard then how about getting creative with some pipe lagging foam and some tape? As long as the poles will fit in the centre then the pipe lagging should fit easily and be dead easy to replace as necessary too.

 

As for whether your dog could be taught to accept another dog, I'd recommend leaving that decision to someone who introduces dogs as part of their job, like the people who train up sensing dogs There are ways to introduce dogs that can maximise success, and if you had to keep the dogs in separate areas until you were sure that they were OK with each other then that should be relatively easy.

[MaisieM]

Hi MaisieM,

 

Sorry to hear about your girl, my cousin in the Netherlands suffer(ed, it is now under control) with epilepsy and the folks at the Dutch Epilepsy center were brilliant in advising my family on things to do/not do. I would recommend getting in touch with the Epilepsy Society if you haven't already.

 

Thank you for your reply. No i haven't yet contacted any epilepsy society. She only got diagnosed on Friday even thou is was kind of expected. Ive been waiting around all day to near from hospital hoping i would get some advice of their epilepsy team.

[medusa]

Oh- and get to see a specialist occupational therapist. They will know where to get all sorts of safety equipment, from boards to prevent your little one sliding down in the bath in the event of a seizure to helmets to protect her head in the event that this turns out to be the most effective way of preventing injury during a seizure, and they will know who to apply to for funding to help set up your home in the least risky way for your daughter too.

[MaisieM]

If you can't find a padded bed guard then how about getting creative with some pipe lagging foam and some tape? As long as the poles will fit in the centre then the pipe lagging should fit easily and be dead easy to replace as necessary too.

 

As for whether your dog could be taught to accept another dog, I'd recommend leaving that decision to someone who introduces dogs as part of their job, like the people who train up sensing dogs There are ways to introduce dogs that can maximise success, and if you had to keep the dogs in separate areas until you were sure that they were OK with each other then that should be relatively easy.

 

Great idea.. I haven't even been thinking like that my head has been all over the place. I was thinking about getting a lower bed that is near enough on the floor.

 

As for the dog.... She is a very stubborn old little lady I don't think there is a way around that.

 

---------- Post added 07-03-2016 at 21:39 ----------

 

She has only had 2 seizures one when she was awake and her second I'm not sure because i only went in to check on her and found her having a seizure so i don't no if she was awake or asleep when that one happened. With her last seizure lasting over an hour I'm wanting all the safety i can get. Also waiting 40 minutes for an ambulance when i had no idea what to do in the situation has just made me feel even more **** about my self

 

Got someone coming over on Thursday to show me what to do 'if' it happens again.... every minute day and night i just feel like I'm sitting around waiting for one to come along

Edited March 8, 2016 by MaisieM