Epilepsy experience

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Icarriedawatermelon
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Joined: Mon Mar 20, 2017 7:20 am
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Epilepsy experience

Postby Icarriedawatermelon » Mon Mar 20, 2017 7:59 am

Hi All,

I would be grateful to know if there is anyone on here who has experience with epilepsy. My 2 year old son developed epilepsy at 22 months of age. We have tried 2 different drugs now (6 months since diagnosis) with one not really working at all (1 week response) and the other slightly better, being effective for 1 month. We are just being told to keep increasing the dose of the second drug while we know it's just not working anymore. Our little one is now having 4 or 5 seizures per day that we notice, they are brief and sometimes virtually unnoticeable so there could be more that we don't notice. He doesn't lose consciousness or fall to the ground, but he is more and more aware of them every day though and it is so disturbing for us to see these happening with no idea as to when they might be controlled again. He is being seen by Great Ormond street hospital for consideration for brain surgery as he has a lesion on his brain which they believe to be the cause. However we remain under the care of Chelsea & Westminster for his medication and have felt totally under-supported by the neurology team there. We are really struggling to cope with it and would really benefit for a support network of families who have been through similar issues and happy to share their experience with us. Also, how you managed to maintain your work commitments through it all, how you explained it to others etc. We were at a children's party yesterday and he had a seizure in front of everyone there, when my husband and I lept from our conversations with others to be by his side, the other parents (that we had never met before) asked what was wrong and I explained he has epilepsy and the reaction was an 'ooooooooh' and as though it is a moot point not to be discussed further. I have no idea what response would be appropriate in that situation but I am in pieces feeling like my boy is always going to struggle in life with this and there is so little understanding of it in the general public. So far he has excelled in all areas physically and verbally and until this diagnosis I had no cause for concern whatsoever. It has completely blown us away to think life is going to be such a struggle for him now and we would love to speak to anyone else with relevant experience. I feel as though I am worried now to go anywhere new with him to avoid feeling like I can't talk about my amazing little boy and his condition. Many thanks!