4yo with epilepsy

Father

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Hi just wanted to share our story and hope someone can tell me it's normal.

My son is a fit healthy 4 year-old with no medical issues.

Last November at 7pm just as he was falling to sleep he had a 14 min long (what I now know to be) sezure. He went stiff eyes rolled to the ceiling and just kept swallowing while being unresponsive. That was some scary shit... So went to a and e were kept in over night and then releaced with the promise of tests. The next day my son started to have a tick.(head and arms jerk) a few days later he started to have moments of absence.

This continued while we waited for tests first one being a video eeg. We captured some of the jerks while doing the eeg which was great. What wasn't great is we were told he deffinatly didn't have epilepsy and it might be autism or something else..

Next test 24hr eeg. Got some good data from that one. Now they think it might be epilepsy bit the specialist didn't want to take him on. (Ego much)

Next 50 min MRI under sedation.

More meeting with non epilepsy specialists and me starting to lose my temper.
At the end of our latest meeting my natural sarcasm started to escape and I may have said some things.
1hr later we receive a phone call saying the epilepsy specialist will take us on and my boy has got epelepsy and here's a bottle of epelete. Thanks.

Here's why my missunderstandings start.
We give him the drug and the next day I have a different little boy drowsy angry but without 20-30 tick a day.
We have had a few people comment on how our son is like a different person... And that's my issue is it worth it. Doping up my child just so that he dosnt have these judders.

Next part have been taking drug for 1 week last night at 3am baby monitor wakes us up he is having a sezure (now the drugs don't work they just make you worse) so ambulance called into hospital. After getting checked out we.are.told the epilepsy specialist will be doing the rounds today so we could see him (great actually see the guy who diagnosed him) so we waited and waited and at 1pm he turned up. We have a very one sided conversation where I feel like I am being red a script.
So I pipe up saying what's the point in sedating him. I get told in broken English his epilepsy is very bad. Ok well you are the dickhead that didn't want to take us sooooo.

Anyway my main question as I write this at 4am because I don't want to sleep incase my boy chokes himself in his sleep. Dose it get any better or is he going to be constly stoned for the rest of his life (due to the meds).
 

Father

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Sorry for the rant but I have no faith whatsoever in "specialists" and would like to as some real people.
 

Porkette

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Hi Father,

Welcome to CWE! It could be possible that your son is having myoclonic seizures these seizures happen when a person goes to bed and sometimes when they wake up. I had this type of seizure until I was put on vimpat and then the seizures stopped.
Tell your sons Dr. to do a sleep study on him along with a video e.e.g. and a e.k.g all at the same time by doing this the Dr. will be able to see if your son is having seizures in his sleep.
Take my word I've been on ove 10 different seizure meds and the meds can change a persons behavior sometimes but also epilepsy can cause a person to be depressed or moody also depending on the area of the brain that's being effected and triggering seizures. Tell the Dr. to do a DNA test all they have to do is draw some blood and get some salvia from the inside of a persons mouth then they send that to the lab where they can see the amount of enzymes in a persons liver and their body chemistry, by looking at all of that they can match that up to the best seizure med with the least side effect or see if the person is drug resistant. Be sure to write down on a calendar what time your sons seizures happen and describe them this will help the Dr. see a possible pattern in his seizures. You may want to try your son on the ketogenic diet also this diet is great and has been around since the 1920's the diet is high in fat and protein but low in carbs and starch foods. It helps build up ketones in a persons body which in turn reduce or stop the seizures. I wish you and your son the best of luck and May God Bless the Both of You!

Sue
 

Nakamova

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Hey there -- first off, a big hug for you and a shout-out. Being a parent of a kid with epilepsy has got to be one of the toughest things.

And that's my issue is it worth it. Doping up my child just so that he doesnt have these judders.
Untreated seizures can continue to get worse, so yes it's important to find a treatment that works. However, there are a lot of different epilepsy medications to try, as well as diet-based treatments and surgery, so you deserve a neurologist who will collaborate with you to find one that provides the best level of seizure control and the best quality of life. Keep being a squeaky wheel. Take your son to a pediatric neurologist who specializes in epilepsy. If you don't like the neuro you're working with, find another who is responsive.

Does it get any better or is he going to be constantly stoned for the rest of his life (due to the meds).
See above -- you need a neuro who will persist in looking for the right treatment. Everyone's epilepsy journey is different, but you shouldn't accept your son's current state as a given or as a predictor of his future health.
 

Father

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Thank you for the replies. I am a bit less angry now I have had some sleep.
We have an appointment with the same specialist (when they can be bothered to book us in) so I will definitely raise the DNA test question.

It's good to also know that depending on were he has the brain activity his mood will change so thank you for that. Is there any other hints and tips for care as he cannot really tell me when he is feeling different.
 

Nakamova

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Keeping a detailed seizure diary (where you also note things like diet and environnment) can sometimes help identify factors that may be secondary triggers for the seizures -- things like fatigue or something your son eats. It can also help you track a medication's side effects and effectiveness, and show if the seizures are changing in duration, frequency or kind. All information that would be helpful to his neurologist.
 

Porkette

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Hi Father,

It's a good idea to ask for the DNA test but don't be surprised if the Dr. tells you they don't do that or they don't know what you are talking about. That's a bunch of nonsense, often the Dr. doesn't want to do a DNA test because they like to push the meds on a person and in turn they make money from the drug co. when they do. If for some reason the Dr. refuses to do a DNA test just tell the Dr. "I will have to report this to the medical conduct board" and then take my word they will do it because they don't want to be in any hot water. One thing that can sometimes trigger seizures for some people is Nutra Sweet (aspartame) and of these sweeteners can sometimes cause seizures because the sweetener causes more electrical activity in the brain which in turn can trigger seizures. I had this problem when I drank diet soda and I started having a lot of seizures. My Dr. asked me what I was eating and drinking and the moment I told him diet soda he told me to get away from it and stay away from any of the artificial sweeteners because they would mess me up and cause seizures for me. I wish you and your family the best of luck and May God Bless All of You!

Sue
 

Freda

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If you're in the uk you can ask to be referred to a different hospital, the one you're at sounds rather hit and miss. I don't know what hospitals are good with epilepsy but I'd not settle for some tin pot local hospital for a child. I'd get referred to Great Ormand Street children's hospital in London. Don't think you can go wrong with them, even if it's a train ride away.
 
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