Intro: child with focal epilepsy

[AngelaVA]

Hello, I have a 6 year old daughter who was diagnosed in January with epilepsy (complex partial and secondary generalized seizures). This actually started when she was about 11 months old but for several years we were told she just had fainting spells and behavior problems. Finally when she was 5 I had a big fight with her doctors and insisted they send us to a neurologist who did a sleep deprived EEG which showed very clearly she has epilepsy.

We started to Keppra and were amazed at the positive changes in her behavior and quality of life however we couldn't quite get seizure control with a lower dose and the higher dose caused too many side effects so we recently changed to Trileptal. So far she still has some seizures on this as well but just like on the Keppra they are hugely decreased. We are still working with her doctor to find the best med/dose for her.

She has 3 main presentations of seizures, in the first my daughter stares off and then feels confused and sleepy, the second (more rare)times she will have convulsions and tremors, but the third her eyes will just close and she will slump like she's suddenly asleep for a few seconds and then shake off any attention irritably and go back to what she was doing before. The third type will often happen 2 or more times in a row where she briefly loses awareness, comes back, then loses awareness again. Sometimes they are tiny little twitches but no real convulsions. She gets really angry and upset if you interfere or try to get her to stop and rest while this is going on, but sometimes it's really unsafe, like today it happened in the swimming pool. Any tips on helping her when this type of what I assume must be a seizure occurs? She does not like to talk about seizures and always insists that she didn't have one.


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[MichaelJO7]

I have seizures like your daughter with the exception being that mine almost always come with convulsions or noticable erratic movements. Your observations are good. Her behaviors are quite consistent with seizures, all of what you have noticed. When I am having a seizure, and I have plenty, I do not like being touched. It is more sensory stimulation, information which I can't process correctly at that time, and I feel violated when people touch me. I know personally, I do not want people to panic, or lose control of their emotions, so I try to reassure witnesses that everything will be ok (if I can talk or am not staring). I want to be treated as normally as possible. I think your daughter needs that.

 

[Nakamova]

Hi AngelaVA, welcome to CWE!

Good for you for getting the docs to play closer attention to your daughter's symptoms. Has her current neurologist provided any guidance for dealing with the third kind of seizure? The swimming pool incidents are definitely a huge concern. One CWE member found that taking their meds three times a day (w. no change in total dosage) led to complete seizure control, so perhaps this is something you could explore with the doc.

Your daughter may well be completely unaware that she's having the seizures, which makes it tough. Have you tried videotaping them so she can see what is happening? (Not sure if this will be convincing enough for a 6-year old, but may be worth a try anyway). Some people have found that intervening with a loud noise, strong smell, or certain acupressure techniques can help derail a seizure. You can read a little about that here: http://www.coping-with-epilepsy.com/forums/f23/putting-off-seizures-10010/

Do you keep a seizure journal? If so, have you noticed any particular patterns or triggers? Sometimes there can be environmental triggers (like temperature change or bright sunlight) that can play a role. Does your daughter have any food allergies or sensitivities? Have you made any dietary changes as part of her treatment?

Best,
Nakamova

 

[AngelaVA]

Thanks for your replies. The most common trigger for her is something that's fun or exciting, a birthday party, an Easter egg hunt, yesterday was chasing her daddy with a squirt gun, or else fatigue or overexhertion. She also has hypotonia and balance problems, possibly very mild cerebral palsy (doctors can't seem to agree on this) so she gets fatigued very easily and when she fatigues she tends to have seizures either right then or later on while she's sleeping that night. The neuro says the third type of seizure is just a variation of her normal seizure pattern. It's only happened a couple times and always seems to come a few days after a medication change (dose or type).

RE diets we have done gluten, dairy, soy free diet and also GAPS. They don't affect her seizures at all. After doing special diets for various reasons for the last 4 years without any impressive results I'm really disinclined to try any new ones. She is allergic to soy but she gets hives from it not seizures, she seems to be outgrowing this allergy but we still avoid it just to be on the safe side.

I haven't yet been successful at videotaping a seizure, they usually only last 1-2 minutes and that's quicker than I can find my phone and pull up an app. I continue to try though, maybe I will get lucky one day. She often has auras that make her smell a strange scent around the time she has a seizure. She often blames it on the person who last gave her food, that they have her bad food that made her feel funny, made her fall asleep ect. I am off to read the link you posted, thank you.

 

[masterjen]

It must be tough being young and having seizures. Things are difficult to express and difficult to understand. There are psychologists who deal with just these sorts of things; ie. helping the child understand his/her ailment and learning how to express what they are feeling. Your child's pediatric neurologist should know of someone to recommend to you if you feel this could be of help, or if not you can contact the psychology services of the children's hospital you are seen at.

 

[AngelaVA]

It must be tough being young and having seizures. Things are difficult to express and difficult to understand. There are psychologists who deal with just these sorts of things; ie. helping the child understand his/her ailment and learning how to express what they are feeling. Your child's pediatric neurologist should know of someone to recommend to you if you feel this could be of help, or if not you can contact the psychology services of the children's hospital you are seen at.

You would think there would be more resources for this. I surely think she could use someone to help and talk to a therapist or a support group or something. It's not like she can get on the forums and chat. I called child life at her hospital, my state chapter of the Epilepsy foundation, and some private play therapists. All child life will do is send me amazon links to books, the Epilepsy foundation's closest group is 3 hours away, and the private therapists either say she's too young or they aren't taking new patients.

 

[masterjen]

You would think there would be more resources for this. I surely think she could use someone to help and talk to a therapist or a support group or something. It's not like she can get on the forums and chat. I called child life at her hospital, my state chapter of the Epilepsy foundation, and some private play therapists. All child life will do is send me amazon links to books, the Epilepsy foundation's closest group is 3 hours away, and the private therapists either say she's too young or they aren't taking new patients.

What a huge frustration!! I honestly wouldn't have thought any child would be too young. In my area of residence they take children as young as 3 years for play therapy (not that does you any good ) I hope the books are of some help, and that you were able to place your daughter on some wait lists. It might be that she won't need the services by the time her name comes up, but at least a spot is reserved in case she does.

 

[AngelaVA]

There is one other thing that happens that I wonder if it's a partial seizure. At night she sometimes wakes up and is shaking. Not convulsions but trembling badly like someone would if they were severely cold (which is not the case). She is able to get out of bed and walk in to my room which makes me think maybe it's not a seizure but then she doesn't speak or answer any of my questions at all she will just lay down and go back to sleep. Usually she will be more tired and sleep in later the next morning.


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[Nakamova]

She is able to get out of bed and walk in to my room which makes me think maybe it's not a seizure but then she doesn't speak or answer any of my questions at all she will just lay down and go back to sleep.

This does sound like it could be a complex partial seizure, which can resemble sleepwalking.

 

[AngelaVA]

This does sound like it could be a complex partial seizure, which can resemble sleepwalking.

Should I request any more testing with regards to this or is it basically irrelevant because we already have an EEG that shows seizure activity?


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[Nakamova]

Not sure more testing is required, but it's worth making a note of and mentioning to the neuro. Sometimes certain meds are better than others depending on the seizure type that's occurring. In addition, the time of day that seizures are occurring might suggest an adjustment in the timing/dose of her meds.

 

[AngelaVA]

3 partial seizures this week, not a good week for her. We are basically having a stay in the AC, eat healthy and relax day today to try to help things calm down. Tomorrow is big sisters birthday party and its hot and both parties and heat are triggers for her. Hoping for a good day anyway.


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[AngelaVA]

I did some googling about her new medication (Trileptal generic) she's only on 6 mL a day which is 360 mg. This forum won't let me post links but Google says that for a 30 kg child she should have started at 600 mg a day and increased it weekly at by 300 mg per week to reach a range between 900 and 1200 mg a day (all of the daily doses divided in two of course). So she's been on this dose that appears to be only a little more than half of the recommended introductory dose for more than 2 weeks with no dose increases? Why do they have her at such a low dose when she's still having so many seizures? Does going slower with it decrease side effects or something? We see her neurologist Monday morning I guess I have a lot of questions to ask about this.


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