My 2 1/2 year old is having seizures

[debster]

Hi, thanks for reading my post. My daughter started having mild, short seizures on the Sunday, approx 4+ a day(I am sure I missed some as I was only just figuring out what they were) increasing to 20+ longer more intense seizures by the Friday. On Thursday I rushed her to hospital after what we thought was around a 3 minute seizure but she didnt seem to come out of it properly and only spoke about 6 words until lunchtime, she was vomiting and had at least 15 more that day, including some clusters and during sleep as well. On top of that she twitched almost the whole time during sleep. She was admitted to hospital for 4 days and they just kept increasing in length and intensity. They did an EEG, she had two seizures during this, which they said were complex partial seizures. They started her on Sodium Valproate and the seizures stopped after 4 days, it has been just over a week without any now. They think she is probably having a few different kinds of seizures. Can you tell me if this is a normal way to start epilepsy? Should I be worried about something else happening inside her? She should be getting an MRI in a week or so. My daughter is 2 years 6 months and has never had any other health issues, she is quite intelligent for her age. I would be very grateful for any advice. Thanks

[Fedup]

debster I am sorry about your 2 1/2, is this the normal way to start for some yes but to blame yourself or any one else in your family is wrong, I am an epileptic since I was a child and some of what you describe applied to me when I first got seizures or so I was told by most of my family, even to this day my mother blames herself in some way, but there is nothing she could do, she did not know what was going to happen. I twitch most of the time during sleep as well, the EEG and MRI are normal I still get them done and a few more when they think of them, but I have to laugh sometimes I know more than they do about setting them up. Remember there is always a chance that she will grow out of this, that is what the doctors say. I have grand mal epilepsy and I am married with a good job and I drive. so do not despair.

[RobinN]

my daughters seizures changed with each med we tried.

Debster - what is her daily diet like?

[Nakamova]

Hi debster, welcome to CWE!

Unfortunately, epilepsy can arrive out of the blue, at any age, without any obvious causes. The majority of cases are "idiopathic", i.e. without a known primary cause. There can be secondary triggers though -- metabolic imbalances, nutritional issues, infection/illness, etc. -- so it can be worth paying close attention to see if there are any environmental or dietary factors playing a contributing role.

I'm glad your daughter's seizures are responding to the Valproate -- that's a good sign. The meds are very powerful though, and can have unpleasant side effects, so at some point you may want to look in to other approaches. There's more info here: Proactive Prescription for Epilepsy

Best,
Nakamova

[debster]

Hi Robin, Thanks for your reply. Her diet is normal for a 2 year old. She eats all kinds of protein and lots of vegetables. Not that much fruit. We don't have that much pre-packaged food but I do do baking every couple of weeks. A typical breakfast would be porridge or eggs with toast, lunch -sandwich, fruit, crackers, and dinner meat, pasta(plain), and 3 or 4 veges(always broccoli), and snacks of fruit or biscuits, crackers,etc and only water and milk to drink. Fastfood only once a month. Her brother was born with anaphylaxis to dairy and eggs so I had to have a pretty good diet for him, we live in NZ and 5 years ago there wasn't may store brought foods that didn't contain dairy or traces of dairy in them. He has now out grown them and I have gotten a bit lax. Should I go back to what I knew?

[debster]

Thanks for your reply Nakamova. Yes already she has a few side effects including eating more(of anything) and the odd sore tummy. They told me she would need to be seizure free for 2 years before she came off the medication. She had over 80 seizures in that week. Is there a way she could come off them earlier if I followed all the advice for triggers, diet, etc.. She has a very good sleep routine, and pretty good diet. She is actually my perfect little kid, very easy. I would love for her to not be on any medication.

[debster]

Thanks Fedup, it's nice to hear from someone who has grown up with it. Have you always had to be on medication? I did worry if she didn't grow out of it what my gorgeous little girls life would be like...kids can be cruel, etc. But I have pushed that aside and will focus on doing what I can now to hopefully give her as best chance of outgrowing it as soon as possible.

[Nakamova]

Is there a way she could come off them earlier if I followed all the advice for triggers, diet, etc.

I would love to say yes, but really, it's a big unknown. You need to balance any side effects against the risk of her seizures being uncontrolled and/or progressing. It's possible that if you identify any of her triggers and can avoid them you might be able to lower her med dosage at some point in the future. But right now it's great that the seizures are responding to medication and her brain can get a rest.

[Fedup]

debster

Yes I have always been on medication and kids are cruel but until she gets a little bit older and can stand up for herself there is no reason to let the rest of the kids know all you can do is the same as you are doing now LOVE her, I know 2 girls I should say women now with epilepsy one girl got it in her teens,I used to work with her she is now maried with a family and manages a Hotel. Never give up hope and try and except what happens, its easer said then done - I have to master this yet. The one thing I know is taking her completly off her meds can be a bad idea no matter how you do it be very carefull

[debster]

I have another question. Can she have a few different triggers? I have documented all her seizures I have seen. In the hospital when a nurse was about to take her temperature via her ear a seizure started. Also she had a seizure often when we were in the hospital playroom, or someone walked out of the room/shut the door/cupboard... Could noise be one trigger?

Also she started preschool a few months ago for a 2 mornings a week, her brother was also there with her the whole time. One week before I noticed her first seizure I dropped her off at preschool by herself as her brother had his first school visit. She was very upset when I left. She is a sensitive we girl, who cries even if I growl her. Could this have started her seizures? Could she have been so distressed her brother and I were not there it triggered something in her brain?

[Fedup]

Debster any or all of these could trigger a seizure, floresent lights can be a trigger, claping your hand can be a trigger what I am trying to say is you have to try and eliminate things to find the trigger and it could be more than one, yes the distress could cause it or the fact she knew she was going to school there are any amount of triggers, I still do not know what triggers me but I have a good idea.You have to treat her the same as the rest of the family when she does something wrong she gets punished and so on, and remember when she realises how vunerable you are and she will she will use her epilepsy to her advantage, I did and it worked, she is clever than you think

[debster]

Thanks for all your advice Fedup. I have read your 'about you' and can see life has been a challenge for you. It sounds like the side effects from the meds are almost as bad as the seizures. I will be watching out for them in my girl. I guess this has not all sunk in for me yet. I am dreading her ever having another seizure as I can tell she knows. I hope you slept well and will talk again soon.

[RiffRaffMama]

Debster, I get the feeling you're blaming yourself for this.... it's nothing you did or didn't do. A good 50% of the time epilepsy just "happens". Don't beat yourself up about it. By all means look into other things you can do for her but it's definitely best if you see out the two years of being medicated. Unfortunately even after the two years it doesn't always resolve - mine didn't. I believe the Ketogenic diet has been shown to be helpful for childhood epilepsy so if you're looking for something to try in addition to the medication I'd suggest reading up on that.
Best wishes to you and your family.

[Fedup]

debster

I hate to tell you but what happened to me is only a guide line and no advice, remember not everyone is the same but we all have to cope and live life, you will get some good support and help here and if I can help you any time, just say. Thanks I had a good sleep, too good but still made work, took a few precautions, today I talk with GP.

[debster]

Thanks RiffRaffMama! I had a good cry after reading you message. I haven't really done that yet, it felt good. I don't want to blame myself, I just wish this didn't happen to my baby. I have actually been quite shocked after reading some of the posts on here. I have a much better understanding of epilepsy and a much greater respect to people with it. Thanks you and I hope you are feeling better

[RobinN]

I would go back to what you "knew". I also would make a 3-6 mo trial and remove that toast, sandwich bread, crackers, and pasta from the choices. Remove potatoes and bananas for a while too. You can substitute coconut milk for cow dairy.

It is worth a trial. If you have already seen food sensitivities in one child, it is a possibility there is one here as well

[debster]

Thanks Robin. This is very interesting for me. I will be heading out this morning to stock our cupboards with rice milk and almond milk (hope they're ok?). I might try some gluten free products, and try and make some healthy alternatives to store brought snacks. I have a great book called 'The Chemical Maze', which tells you what additives to avoid also, just need to read it more often. Can you tell me why avoid Banana's? Thanks for your help.

[Fedup]

Hi Debster

Just up for a minuet, Bannan's are high in Potosium and this can be a trigger and are usualy connected with people who have a kidney problem, Tomatoes are also high in potoeium.

[debster]

Oh, awesome thanks Fedup!

[Fedup]

Hello Debster

I am so sorry to hear about your little girl, Bannans are hard to digest so should not be eaten at night for this reason, and you are supposed to have a max of 1 or 2 per day, Tomatoes are good for you ( tomatoe sauce anything with tomatoes ) and I buy liver for my husband because its high in iron and he needs it, its not easy cope to be honest when it comes to epilepsy nothing is easy, espically the worry. Keep the good side out