Active discussions

Meet the Other Phone. Protection built in.

Meet the Other Phone.
Protection built in.

Buy now

Please or to access all these features

Talk
Children's health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Original poster

Long shot but ....epilepsy medicine

31 replies

JellyBaby26 · 27/03/2016 08:23

I really doubt anyone will reply to this but L here goes.

Dd is 10 months and is undiagnosed but suffers from badd epilepsy with focal tonic seizures , myclonic jerks and infantile spasms to name a few.

She has recently been put on keppra. Her initial small dose was OK and her jerks completely stopped but her sleep deteriorated and has got worse over the week. Now on amother increase she is almost refusing to sleep and she's jerking again. She woke at 3 and hasn't been back to sleep yet. I'm dreading the day.

Has anyone ever used keppra? I haven't read great things about it online.

I just want my poor little girl to be comfy and happy which she quite apparently is not!

OP posts:
eilis87 · 09/04/2016 21:18

Hi, my son was on Keppra for a quite a while. I know the list of side effects made it sound awful, but it worked really well for him and I didn't notice a huge difference in him.
Having said that, it stopped controlling his seizures after about a year...

eilis87 · 09/04/2016 21:19

Sorry, I should have said, when he was on it I always felt like it made him sleep really lightly and he never really took naps, but then he still doesn't now that he's on epilim

uglyflowers · 09/04/2016 21:35

My son has been on keppra for 5 years. It totally controlled his seizures. He is being weaned off it now in the hope that he no longer has epilepsy. Every person reacts differently to every medicine. Bear this in mind. Also give B12 vitamins with keppra as it flushes the vitamin B out of the brain and makes people stressed and angry. Google it. Good luck x

Original poster
JellyBaby26 · 10/04/2016 20:26

Thanks for the replies!

We are increasing her dosage up to 2.5ml twice daily as it's not controlling her completely.

Her sleep has settled but she's not 100%. She's constantly developing new seizure types. We have had tonic clonic, myclonic, infantile spasms and focal tonic. Her epilepsy is awful and I really feel it stops her from developing in anyway. She's a 10 month old newborn 😕

Such a bloody minefield!!

I will ask her neurologist re vitamins. He has mentioned adding topamax (I think that's what it's called) and dropping clonazepam.

OP posts:
eilis87 · 12/04/2016 20:55

Jellybaby26 I know how you feel. It's the waiting that's awful and no one can tell you how things will be; I really struggled with that in the begging and it still gets to me every now and again and I have a wobble!

My son has been on five different medications and every one works for varying lengths of time - total bloody minefield! Never been on toppamax though. He's currently on epilim and lamictal which seem to be working well in combination with each other.

MyWey · 12/04/2016 21:02

I was on Keppra and hated it. Have tried a few others and now happy on Lamotrigine. There are loads of epilepsy drugs out there. Definitely try and find the one that suits her best. It is miserable being on medication that doesn't agree with you and it doesn't have to be that way. I am so much happier now I'm off Keppra.

CatsRule · 15/04/2016 14:53

My ds has been on Levetiracetam for nearly 2 years now. It has been effective in stopping his seizures although it did take him a few months to settle down on it. His behaviour changes were really noticeable and he was frustrated and angry...he still can be but isn't as bad. He doesn't sleep well but he never has so I'm unsure if that's the medication or just him.

I did recently speak to an adult on the same medication and she explained that she felt irritated and angry a lot and feels it's worse when on a smaller dose - I found that interesting as my ds is also on a low dose, whether it's relevant or not I don't know.

I did previously ask about vitamin B and the neurologist said it wouldn't be effective for him, it's only in certain cases - I never really understood the explanation.

We're in the process of weaning ds off the medication to see if he can cope without it - it's a scary thought but it would be so good if he no longer needs the medication - we have everything crossed!

Original poster
JellyBaby26 · 16/04/2016 06:59

Thanks cats.

It seems after some time she has improved marginally. She stilol is having seizures but they don't seem to distress her too much.

I have noticed an improvement in head control which is lovely to see.

We sill need some adjustment but it's all a guessing and waiting game!

OP posts:
CatsRule · 16/04/2016 10:28

It's so difficult when they are that small and can't communicate well or understand their feelings. That's good you're seeing some improvement...hope it continues.

I also think that people can put their behaviour down to age rather than side effects of the meds. Ds was 2.5 when he started the meds, on one occassion he tried and nearly succeeded to pick up a chair and throw it in a rage! That's not normal terrible two's behaviour. When we spoke to the epilepsy nurse she dismissed it and said we both needed to go on a parenting course...as you can imagine, that went down well!!

This is the first day of no meds for ds...we're both quite nervous, I just hope it all works out.

uglyflowers · 16/04/2016 19:11

Good luck Cats. We have gone from 5 mls x2 a day to 3.5mls over the last few months. We are aiming to totally wean DS. Like yourselves, it is a scary time.

Original poster
JellyBaby26 · 17/04/2016 07:57

Good luck to both of your.

Sadly I don't think we will ever be medicine free Sad

OP posts:
CatsRule · 17/04/2016 16:03

Thanks uglyflowers...and you, I hope weaning goes well.

JellyBaby26 don't lose hope...we never thought we would get this far.

It could be my imagination, probably is me hoping, but I feel ds is quite calm and content with reduced/no meds. I'm sure it's too early to tell but he is even cooperating going for a nap...he never does that no matter how tired he is!

heavenlypink · 17/04/2016 16:26

My DS is much older and after his seizures went a little 'haywire' last year the paediatrician started "messing around" with his medication and tried him on Keppra (Levitracetam) It actually made things worse and the doctor "admitted" it was probably having next to no affect at all on his seizure control

eilis87 · 19/04/2016 07:28

Catsrule if you don't mind me asking, how have things been with your DS's development?

My son is almost two and a half and while he is a very happy child he has no words yet. His understanding is good. His fine and gross motor skills aren't where they should be either. We had him assessed as part of a surgery work up.

It just really worries me and I have nothing to compare him to because we don't know any children with the same difficulties as him.

Thanks

CatsRule · 19/04/2016 12:22

Ds seems to be developing fine, talking and doing things as he should as each age and stage. I think this is why they are hopeful he will grow out of it.

Ufortunately though, after only stopping the meds on Friday he had a seizure this morning. We are waiting to hear back from the epilepsy nurse whether we are to begin meds again.

Original poster
JellyBaby26 · 19/04/2016 12:27

Oh so sorry cats! I hope he grows out of it as you say.

Highly unlikely mine will as her epilepsy is caused by an unknown disorder and she has major other issues but can't treat her for it as we don't know what's wrong with her!

OP posts:
CatsRule · 19/04/2016 13:03

Thanks JellyBaby26...I hope so, he's just not ready yet and we can't help but feel a bit gutted for him.

We are so fortunate in that there is no reason for him having epilepsy, so no other conditions or complications and we have to accept it to be able to help him. His seizure this morning was a short one and he came round by himself. Previous seizures have lasted 45 mins and one was 1 hr.

Are they still doing tests on your dd to find out what the disorder is?

Original poster
JellyBaby26 · 19/04/2016 14:08

Oh poor love!

Yeah she has had biopsys, lumbar punctures, blood tests and had her mitochondrial dna tested and nothing has shown up. We are now on the 100,000 genomes project so just a waiting game now. She's almost 11 months and is basically a newborn which is difficult but makes little steps.

Just dream of the day she might smile at me !

OP posts:
CatsRule · 19/04/2016 14:18

That's really tough - I hope you have some more answers soon. It's hard enough when you know the diagnosis but to not know and therefore not know what to do or how to help must be really difficult, especially when they are so small and can't communicate.

Miloarmadillo1 · 19/04/2016 20:10

Hi jellybaby. My daughter also has IS. Are you aware of the Infantile Spasms Community? They have a Facebook group that is very active and helpful. Keppra is not a frontline med for IS and it's really important to get rid of the hypsarrhythmia because they can't develop if that is present. The frontline meds are prednisolone at doses above 4mg/kg, ACTH and Sabril (vigabatrin). You might need to continue with keppra for other seizure types. Topamax gets a bad press on the IS board for turning them into zombies and suppressing development. Come join us!
www.facebook.com/groups/infantilespasmscommunity/

Miloarmadillo1 · 19/04/2016 20:12

My daughter is also cryptogenic so far ( she's 2 next month and was diagnosed at 8 months old) and we are waiting for an appointment for the 100000 genome project too.

zzzzz · 19/04/2016 20:49

This reply has been deleted

Message withdrawn at poster's request.

Original poster
JellyBaby26 · 19/04/2016 22:14

Milo I joined it but I had to hide it as am pregnant and it was making me worried about current pregnancy.

She was on prednisolone and vigabatrin for 6 months and they stopped the IS. She really suffered on prednisolone and got gastritis and ended up in hospital.

I'm going to ask her neurologist about what you have said as I don't really understand it all.

It seems that all meds work completely differently with different children and adults.

Dd is also on clonazepam for jerks and I think this is majorly stopping development.

OP posts:
Miloarmadillo1 · 20/04/2016 07:29

Yes, it can be a double edged sword, it freaks me out sometimes seeing the poorer outcomes and relapses. I think you would get much better answers there though. IS is rare and I've not found many parents on here with experience. Other childhood epilepsies often easier to control, use different drugs first line and less likely to evolve to LGS.
If you already tried pred and vigabatrin, then it's fair enough to move on to second line drugs. ACTH is available in the UK but not routinely offered. It does sometimes work where steroids haven't. If you initially had success on steroids it might be worth considering but you are likely to get similar side effects to pred. The other things I would research and ask neuro about are keto diet, if your daughter is a surgical candidate and MMJ. There is now a licensed CBD in the UK called Epidiolex. It doesn't have a specific licence for IS here (licensed for multiple sclerosis) but is going through the process for FDA approval for epilepsy in the USA.
It is one of the massively frustrating things about IS and epilepsy in general that each patient responds so differently and it's a massive process of trial and error. I really hope you find something that works for the longterm very soon.
How is she doing developmentally?

Miloarmadillo1 · 20/04/2016 07:31

Sorry, missed the bit above where you said she was like a newborn Sad. I f**king hate IS!