My child had been diagnosed with epilepsy

[rosieyorkshirelass]

Our ds had been diagnosed with epilepsy - tonic clonic and absence seizures. The epilepsy specialist wants to start him with drugs right away. Our ds had just over a week of fits duirng the night and early morning, then no more- had a fever afterwards, and bad earache treated with antibiotics. Ds has now had no more seizures for 4 weeks this Monday. Something is niggling us both about this- we had an appointment today at the hospital and the doctor was pushing for ds to start- side effects of drugs- weight gain, hair loss, jaundice, hyperactivity- to name a few. My ds is a very active child as it is- the meds will mess him up big style. Are we doing wrong? I just need abit of support through this, as not sure of the right way. Our ds seems back to himself- doing well at school, better settled than before seizures. We have not noticed any absences, either- nor have school.

Hi! How old is he? Has he done all the tests yrt ?(EEG, CT scan, blood tests... Epilepsy is a very comon disease but tgere are some things that must be ruled out before admiting it as it seems...

Hiya he is 5. He had the CT scan- this was fine, blood tests showed no infection. The first EEG scan didn't show anything, because he had a fit the day before- it was all fuzzy. The 2nd EEG scan was on the same morning he had a tonic clonic seizure. They picked up two absences during the time he had the EEG. That first week in Jan, he had alot of absences- mainly during the night- 4 secs out, breathing normal then alot more carrying on.
We are not trying to fight the verdict- but it is strange, he had a fever, sickness, earache, during that week after his last fit.
I woud love to make contact with other mums with children with epilepsy, how they dealt with it, and came to terms with it, etc.

One of my kids has epilepsy, and taking medication since it was diagnosed at 9, of course. Epilepsy is like an earthquake:you never know when it is going to happen or how stong it will be. So I think we must take the best care we can to deal with it - and protect children from seizures as much as we can. And even then we cannot be sure of anything.

Many thanks for that- we want the best for our ds in this- and if medication is what he needs, then we will get it sorted. We just want abit more evidence perhaps of more seizures to prove it wasn't just a blip- his body having a fever and other things, the day after the last fit.
How is your child with the meds- side effects- etc?

I have epilepsy diagnosed at 21 (a few years ago then ).
Medication may need to be adjusted but side effects do not need to be tolerated as there are many different anti-convulsants. Medication will not necessarily "mess him up". I wouldn't dream of stopping my medication as being fit-free and able to drive is so important to me.
You mention the link between your son's fever and the fit. Being ill can lower your seizure threshold making you more likely to fit. The last time I fitted was when I had a kidney infection.
The anti-convulsants may noy stop all seizure but will raise his seizure threshold.
Why not raise your concerns with the specilaist, tell him how you are feeling.

Good luck

I was diagnosed with epilepsy last year. I don't know a thing about how it affects children but I thought it may be helpful to tell you one of my experiences. I was prescribed medication very quickly and had horrendous side effects - so lethargic I could hardly got off the settee, wasn't able to look after my children, splitting headaches, etc, etc. I was eventually put on different medication and the difference was amazing - I felt like my old self. A friend who is a GP told me (and it was later confirmed by my consultant) that initially they prescribe the cheapest drugs possible. These are likely to have the most serious side effects but the medics cross their fingers and hope the patient won't react too badly and the drugs bill is kept down. What I'm saying amongst all that is keep questioning the medics and fight to get the drugs changed if your child does experience a whole list of side effects. I'm sure a more knowledgable mumsnetter will come along shortly

Meds with him have not big side effects, but I personally fear every seizure he has. Seizures can be very harmful to the brain and, if very serious, even cause a stop breathing! You must pay attention to the places he goes too: my son doesn´t go into swimming pools without adult CLOSE supervision, and I don´t allow him to do some sports too. You must always think that during a seizure people do not control themselves, they loose conscience and cannot defend themselves as in a normal way. It is a challenge for us mums to achieve the balance between protection and letting them live their lives as normal as possible.

I have epilepsy, was diagnosed when I was 11, tonic clonic seizures. The thinking then, or with the doctors I saw anyway, was not to start on medication too quickly. I had 4 big seizures over the space of a few weeks, then stopped. Mine are stress-induced, and at that time I was going through changing schools. It settled down, I had no more for a while so no medication. Then a couple of years later we moved house, and I had another 4, went on to medication then and have been on it ever since.

The medication I was on for most of that time was not particularly good, I lost hair, gained weight and was lethargic and tired a lot of the time for most of my teens and twenties. No one ever suggested changing, it was seen as more trouble that it was worth.

Then recently I had to change for other reasons, and it was great, the new medication is brilliant, much better, I have more energy, less side-effects, all good.

So do keep on top of them if the side effects are not acceptable, explore alternatives.

When my ds first started with fits,my dh and I were both nervous wrecks, couldn't sleep- checking up on him. Just this last week and a half I have relaxed more and am sleeping alot better. You don't realise till after respite from the fits what a traumatic experience it is to see your child having fits. During the night , night after night- I kept getting flashbacks of ds having them. I am still ever on the alert - aware more of the possible dangers - I don't want to be overprotective. My ds is such a bouncy, lively, independent child, he wouldn't let me anyway! It helps me and my dh so much to read your accounts- and gain insight and info- which you don't get from textbooks!

Rosie, I too watch my ds sleeping, and my heart darkens when he has a seizure - I feel hopeless, depressed, scared, and very frightened. He is a wonderfull boy, and as a mother I must be stronger than my fear and my sadness. But you must think that you ds can have a normal happy life and that epilepsy can be treated with very few side effects. That´s what counts!!

flowerybeanbag- many thanks for that note about meds. I suppose there are alot of different tablets for it. Has anyone tried the high fat diet- can't spell it- begins with a 'k'? Is it worth a shot or not. My ds is not brilliant at eating at the best of times!

Thank you so much for your kind words chikenmother, it is just I suppose what I am wanting someone to say 'its ok, you can have a normal happy life with epilepsy'. I know it is very common- and there is someone always far worse off than yourself. I feel both dh and I are still both in shock really and it is coming to terms with it. Believe me, as a family we have been through alot with various members of family with more serious illness. But just when everything has settled down- it was like a bolt out of the blue.
All the very best to you, each and every day, thanks for the time in writing. We both appreciate it so much. We have a very caring network of people within a church we go to. But it helps so much to make contact with people that are in the same situation.
Prayer is a wonderful thing, to cast all our cares on the Lord- but it is just to leave them there and not fret! That is another matter!

Hi rosie my ds has had epilepsy since he was 13 months and been on Epilim/Sodium Valporate since. We have had no side effects and it appears a very safe drug. What medication has your ds been recommended?

Oh and we live a perfectly normal life - he does everything his brother and sisters do and no cotton wool wrapping for him though when it first happened I never thought i would ever leave the room he was in, slept next to him all the time etc. Took me about 6 months to relax I reckon

Hi our son 3.4 years old has epilepsy he was diagnosed at 18 months old.
It was very hard to start with and just trying to come to terms with what was happening. He would have a cluster of tonic clonic seizures every 4 weeks or so and he was hospitalised each time. He was put on tegretol to start with which didn't seem to do much then they changed him to epilim which has really controlled the seizures he now only has one seizure every 12 weeks or so.
We have encountered only a couple of side efffects the worst was whilst on both tegretol and epilim which was loss of balance but that disappeared when he was taken off the tegretol. Tiredness was the only other thing we noticed and still do when the meds are increased.

Hi

the ketogenic diet is serious heavy-duty stuff - the neurologist we were seeing when ds was 3 recommended it to us as it seemed like he wasn't responding to what was by then a cocktail of drugs

we saw the hospital's nutrionist and then went off to do our own research and as far as we could see, the diet's basically used wehn ntohing else works for kids whose seizures are governing their lives, and who often have multiple problems

it is impossible to eat normally on the diet and we were told that children don't grow much while they're on it

after reading lots about it we came to the conclusion that in ds's case it would be using a sledge hammer to crack a nut and decided against it = good hting too as a couple of months later we saw a second dr who told us ds had been mis-diagnosed and that he had TS instead ....

It is the epilim/sodium valporate drug that was mentioned. The doctor said about the hypeactivity it may cause. My ds would be bouncing off the walls, as such a livewire and lots of energy, just normally! We would like to see if any seizures come along and then we would go down the route of meds. You don't how your child will react till they are tried out.
Excuse my ignorance, mimsum but what is TS? It might be worth getting a second opinion.

Hi
I have not read any other responses sorry as gotta go out.
our dd had epilepsy for many years but now 15 and has grown out of it.
I now know quite a lot but am no expert.
If you havent already i wouyld ring the hospital and ask to speak to the epilepsy nurse specialist.All big hospitals have them.Ours was fab and she saw us at home and at school and spoke to family ect.She was so good. I personally wish we had never gone down the medication line but thats just us. I learnt to avoid triggers which includided for our dd tiredness hunger infection and stress or excitemnt. You can e mail me if you need to talk-let me know. Also go online and join some of the really good support groups. Must go but please dont worry too much-youll get lots of support .

Come over to the SN list. If he's not having seizures right now I would wait and see before meds cos of their sdie effects.
dd Has had epilepsy since 3 months and it can be a PITA.

Many thanks for both messages- I didn't think to use the SN list. I would like your email, fakeblonde- I don't want to mither anyone, or take people's time up- but good idea about the epilepsy nurse specialist- didn't know there was such a person. Would like to know of some of the good support groups online.
My email is [email protected]

sorry Rosie - TS stands for Tourette's Syndrome - he was having complex physical tics at the time which looked like complex partial seizures

with hindsight we should really have waited before agreeing to medication - as it was my ds was taking unnecessary drugs for more than a year

That must have been awful for you- epecially when your ds wasn't responding to the treatment. The wrong medication too for his condition. This is why we want to take things one step at a time . My ds is having no seizures during the day, and keep spot checking during the night. The school are keeping an eye out for absences too. We are loathe to medicate untill ds starts having more without any infection.Like my dh said if we had started meds when they wanted us do after that first week of fits- we wouldn't have been any the wiser, that it wasn't the meds that were prevented the fits.

Hi Rosie, I was wondering how you got on with your son following his seizures in 2008 sorry I am going through the same thing exact to yours absent seizures when infection or virus reluctant to start meds as maybe a blip if you could tell me how your experience panned our might give me a better idea I’d be most grateful :)