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Positive epilepsy stories please.(17 Posts)
DS1 (almost 4) has just been diagnosed as having epilepsy. The consultant can't say exactly what sort (EEG didn't show any pattern related to specific kinds) He started having very small "jerks" a while ago, has had one huge seizure which ended up in A & E, then yesterday had an absence for the first time.
The consultant has recomended he begins taking epilem. It sounds such a huge scarey drug to take and there sound to be so many bad side effects.
I guess I'd just like some reassurance from someone in a similar situation who has a LO whose epilepsy has been controlled with no side effects. Please.
Hi, i hav'nt got LO with epilepsy but i know a few people who have got it including family members. 2 of my cousinswere diagnosed when they were 3-4, both were given drugs to control it. With one it seemed to be just in childhood and now (shes 28) she no longer needs anything to control it. The other seems to only have seizues when she is ill or pregnant.
Not much help, so bumping you up.Im sure someone more helpful will be along soon.
Hi Sarahhal, my ds is 2.3 and was diagnosed a year ago, like yours with no know reason despite MRI, blood tests and eeg. He has been on epilim 10mls a day since then and has had no side effects. They should give your LO a blood test after 6 weeks to check its not effecting his liver and after that if same as me he will see consultant every 6 months to check weight, height, head circumference and general development. My ds is absolutely fine, maybe gets a little tired quicker than my others, but is fine if he gets his midday nap - yippee for me!! Please ask any questions, but i find epilim a brilliant drug (i also use it in my work and dont know of any bad side effects). HTH xx
Thanks crazylazydaisy - you gave me some good advise when i first posted after William's first seizure. That's good to hear that he has no side effects.
Bethron, hope you've seen this thread for my latest news!! Thanks again for all your advise too!
My ds 2.7 was diagnosed a year ago. We are also in the same situation as in his 5 eeg's and mri have all been ok.
He is on epilim and has been for 9 months now, he was also on tegretol until last week.
The tegretol didn't seem to do anything but the epilim is really controlling the seizures he has not had any for 10 weeks our longest time yet. Before he was having clusters of anything up to 13 seizures in a day every 4 weeks which he was hospitalized each time. If he has a seizure now it is just one which is such an improvement.
Sarah, not a direct answer to your question, but I have epilepsy and I'm doing OK. Mine turned up when I was 29, though, so not comparable to your ds. However, it may be helpful to know that for me, it hasn't had any huge effect on my life - people don't know unless I choose to tell them, I've had a very succesful career, am married and a mother. Epilepsy doesn't mean your ds will automatically be held back. The medicines can hit you hard at first but once your brain adjusts to them, you can operate perfectly well. If Epilim doesn't agree with your boy, or control his seizures, then there are lots of other drugs to try.
Does your ds see a paediatric neurologist? In your shoes I'd want to see someone who specialises in both children and neurology, IYSWIM, and I know this doesn't always happen (some areas have fewer neurologists than others).
Thank you all for your replies.
Edam, interesting point you make about the consultant - sounds awful but I don't actually know his specialism
I'm so relieved to hear positive stories from everyone. They says it's so common in childhood yet I don't know anyone in RL with epilepsy!
Will keep you updated - DH calling consultant on Monday to arrange another appt.
hi sarah. sorry to hear this, but is it reassuring to get a diagnosis? my dh started with epilepsy in his mid 20s. he is largely controlled now by tegretol. he chooses not to drive and it has affected his choice of employment, but doesn't drastically affect his daily life tbh. from what i understand about childhood epilepsy, they mostly grow out of it before adulthood don't they?
<<hugs from stinky>>
doesn't sound awful at all, when you are worried you don't stop to check, you just trust they know what they are talking about! And I'm sure he or she does, just that I'd want to see someone who specialises in both children and epilepsy. Tbh, I discovered I was very lucky to have my seizures while living across the road from a big London teaching hospital that happend to be a specialist centre for epilepsy. Friend of mine had the same thing a year later but no neurologists in her area, was put on a waiting list for one over the county border and it was a YEAR before she was seen. Horrendous.
I had epilepsy from the age of 10 until at 15 I was diagnosed with begnin brain tumour. I am now 30 married and a mother my self. My parents tried not to treat me any differently to my brother if i was naught i was told off I was in the air training corp and did all teenage things. try to stay positive i know i was older but my friends were my biggest support. take care hope all goes well.
We had to go to our gp and ask for a referral. We are now under a paediatric neurologist in Southampton hospital, Who is very keen to get a seizure recorded.
We asked for the referral as we wasn't happy with the dr's at Poole hospital as they weren't specialists and would quite often found we couldn't get proper answers.Although there were two drs that seemed to really know about epilepsy but we only saw them once. And we never saw the same person so each appointment we went to we would have to go over everything again.
Thanks for all your replies. We have another appointment with the consultant next week when we will discuss starting his medication.
If thing calm down and are controlled I'll be fine with the consultant here, but if we need to change or have further tests, I think we may be tempted to go to Sheffield or Leeds as they have much bigger neurology depts than our local hospital.
There has been a natural cure for Epilepsy for decades. I have given talks at clinics about it and seen dozens of positive results, so I know it works.
Every morning take half a teaspoonful of Epsom Salts (Food grade) in a small amount of fruit juice. End of!
From then onwards you will see changes!!
A friend of mine was told by her doctor that she would be struck of his list if she continued "this rubbish"........she had grandma and was on the top rank of medication............Epsom Salts worked. The results are amazing.
Hi there I have 11 year old boy how has had epilepsy since he was 10 year old ever time he had a fit he get so worried about going to bed he liy there getting so cross and upset all because he worried about having other fit in bed so i was just worring if any one els children have had this promble and could give me some adive on how to settle my little boy in bed so that he stay in his own bed so he does keep coming in with his mum all the time
Jualsy - Epsom salts is high in magnesium. I give my DS11 a magnesium every day. He hasn't had a seizure for 6 yrs and is virtually off his keppra now. 0.5 mls x2. I will keep up his magnesium though as I have read good things about it re epilepsy.
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