Anyone dealing with epilepsy or hearing loss?

(10 Posts)
MrsSam Fri 21-Oct-16 14:30:33

DS3 and DS4 are epileptic, DS3 has prolonged tonic clonic seizures lasting at least 15 minutes at a time, luckily well controlled and down to a few a year. DS4 has tonic clonic seizures at night about 5 nights a week and 2-4 a night, and he has absence seizures during the day. I was wondering if anyone else is dealing with this as it would be interesting and helpful to hear how other families cope with it.

Similarly, DS4 and DD2 have hearing loss, DS4 has moderate to severe bilateral sensorineural hearing loss and wears two hearing aids and a radio aid. DD2 we thought had the same type of hearing loss but after a confusing audiology appointment we now have a batch of tests to look forward to to see if she has a fluctuating hearing loss. As with the epilepsy I would like to know about other people's experiences with hearing loss.

Thank you

OP’s posts: |
flapjackfairy Fri 21-Oct-16 20:40:09

I am adopting my foster child who is 2 yrs old and suffers from epilepsy. He has a v nasty one that caused him to have v severe brain damage. He has the development of a 3 month old . His seizures are well controlled at present and he has made slow steps in development however he will always need round the clock care. He is a joy to us and has learnt to smile and laugh again which is priceless.
I saw one of your threads the other day and think you are amazing to be dealing with so many children with different needs.
I have 3 birth children (eldest has aspergers ) and a long term foster child also with complex needs so life is never dull but i love it and any little bit of progress is fully celebrated.

flapjackfairy Fri 21-Oct-16 20:44:10

P.s. as for how we cope! We just muddle along as best we can.
As i am sure you know you have to be mega organised to keep on top of medicines ,appointments,equipment etc
Most importantly you need a sense of humour,endless energy and a damned good washing machine!!

zzzzz Fri 21-Oct-16 21:19:24

Message withdrawn at poster's request.

flapjackfairy Fri 21-Oct-16 21:48:59

We have a sats monitor and he has an oxygen machine as he often forgets to breathe. This helps so much as we can sleep properly and know sats monitor will alert us if there is a problem( He is at high risk of Sudep ).
We didnt have experience of epilepsy before he came to us and he was seizure free on the ketogenic diet for a year before he relapsed for a few weeks. He is stable again at present and doing well which is a relief. Even though i was expecting seizures at some time it was still a bit of a shock when they happened but from what they have told us we will get relapses at times.
Unfortunately the type of epilepsy he has can be life threatening when seizures are active so keeping him stable is all important.

MrsSam Fri 21-Oct-16 22:46:42

Flapjackory I feel for you, brain damage is a significant risk for DS3 because of the prolonged nature of his seizures and it is something I have lived in fear of since he was 6 months old. Thankfully DS3 doesn't seem to have had significant brain damage, however he has ADHD and is being assessed for ASD which his team are agreed should be his diagnosis and no one has been able to say conclusively that his epilepsy didn't contribute to this in any way. They have said there is no conclusive evidence either way and the jury is still out on that one. Because I deal with the epilepsy on a daily basis I have become a little complacent at times and almost forget how serious a condition it is, I don't think I could cope if I didn't. It's only when I have to tell someone about it I am forced to face how serious it is. Thank you for the complement and vote of confidence in my coping with the various problems my children have, high accolade indeed from someone also coping with additional needs!

Zzzzz I say well controlled as we were dealing with 10 plus seizures every night and we have been told this may be as good as it gets. Obviously this may change with the development of new and better drugs but at this point in time this is good for us smile I know most people would disagree but I will take the positives where I can find them. We have seizure alarms for both boys but interestingly one of our dogs (our Bernese mountain dog to be exact) has beaten the alarm every time, I usually have both feet on the floor before the alarm goes off because the dog has woken me. Also DS3 spends a lot of the night wandering and as someone has to be up with him then I am sometimes right next to DS4 when he has a fit. Despite incontinence pants DS4 often needs to be showered and sheets changed after a seizure and I think the lack of sleep is what I find most difficult.

OP’s posts: |
flapjackfairy Sat 22-Oct-16 07:53:44

Wow what a dog! Where can i get one??
You must be totally exhausted all the time! I dont need a lot of sleep or rather i have learnt not to need it over the years but since lo joined us i have begun to understand what people mean who say they are done in by sleep deprivation.
Do you have access to respite at all? You surely must qualify for support?
I also understand what you mean about minimising it because our realities are totally alien to others and what we consider normal would make others horrified!
This is a good thing in my opinion and is a great coping mechanism.
I try not to think ahead and project into the future because it can get overwhelming to me . So i enjoy the good , endure the bad and plod on.
I am sure you (and many other needs parents/carers) know the joy these special children can bring but it is also bloody hard work at times. But i wouldnt change it!
I am glad to have made contact with you and love to speak to others in same situation so keep in touch if you can (and want to of course)
Best wishes

MrsSam Sat 22-Oct-16 09:28:12

I know exactly what you mean about the future being overwhelming, when my thoughts stray that way I can get myself in a complete state. Much better to deal with that when I get there I think smile As to where you can get one of those dogs, you can get a trained epilepsy dog or seizure dog but this one just seems to know, no idea how or why or how, she has just done it from a puppy. Although when she was a puppy, instead of coming in quietly to wake me up she used to bark up a storm at the top of the stairs and wake the whole street!

We are entitled to restbite, although we only found out last year, but we haven't used it. I am fortunate that my eldest two boys are very good and help without having to be asked. With their help my mother is able to give us the odd spot of babysitting so we can spend a bit of time together. As I am the one who deals with most of the night time stuff my OH tries to give me a couple of weekends a year where I can do something without the children. Earlier this year my sister in law and I had an overnight spa break and in December I am taking DD1 to the clothes show with my mother, aunty and cousin. We are also members of a really good country club, we had problems at times with activity clubs the children wanted to go to because they weren't always able to deal with their SN so we looked at other options and found the country club. With a family membership the children get to participate in lists of activities like football skills, kangoo (which has been fab for releasing pent up energy with DS3), tennis and fencing to name a few. They also have loads going on for them through the holidays. It's also much easier to take them swimming as the pool is lovely and quiet. The crèche facility for DD2 also means we can have a couple of hours to ourselves during the day when the older children are in school and we try to do that once a week. Good grief! When I write it all down I sound rather like a lady what lunches grinit helps a lot though. As does being in touch with others like yourself who know how is feels to have the crazy reality we do.

OP’s posts: |
flapjackfairy Sun 23-Oct-16 16:46:37

I dont think it sounds indulgent at all. We dont get any respite (long story) so i do the same l meet friends for lunch or go with dh if i can.
I am going for a spa day for youngest dd birthday next week and taking oldest dd also. It is good to get a few hrs off when you can (overnight even better).

flapjackfairy Thu 01-Dec-16 21:54:11

Mrs sam i am popping in to say that i am going away with dh for a night at a spa this sat (if no one has a drama in the next day or so). First break for 2yrs so intend to enjoy it!
Also our adoption order came through a few weeks ago which is lovely . The little man in question celebrated by having a chest infection so no change there!
Hope you are doing ok and all yours doing ok x

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