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Absence Epilepsy

(9 Posts)
bowbear Tue 28-Jul-15 14:13:22

My DS (4) has suspected absence epilepsy which has just been confirmed with an EEG, currently waiting to see the consultant for the follow up to get a proper explanation about the EEG results.

Just wondering if anybody else has experience of this and how it has affected their child. DS is starting school in September and we are undecided whether to put him on medication to control the absences. I am really concerned about some of the possible side effects from the meds but don't want him to be struggling in school.

Any words of wisdom would be appreciated x

adoptmama Tue 28-Jul-15 16:11:46

I totally understand your hesitation regarding medications. I don't like what my DD is on (she takes 2 meds for simple partials) and I do often feel like questioning the necessity of it as her seizures do not physically manifest in a way which is 'severe looking'. However what we need to remember is every seizure - no matter how 'minor' it may seem (and people often consider absences or simple partials as 'minor') - is caused by abnormal activity in the brain and this is not good for the brain. If he is having frequent absences he will miss a lot at school and it will impact his learning. Seizures also make children more tired and, when they get the normal day-to-day illnesses and fevers (especially with fevers) you will see an increase in seizure activity.

There are definitely things to consider with meds, and not all meds suit all children. There can be huge downsides with some of them in trerms of symptoms e.g. the infamous 'keppra rage' which affects some children. On one of her meds my DD was constantly hungry - literally crying with hunger. She has grown excess hair on her back. I think they are toxic filth! I would far rather we had the option of medical marijuana such as Charlotte's Web. But we don't. So I go with the toxic crap and cross my fingers DD will grow out of her epilepsy as many children do.

Look for a local support group. Epilepsy Action (epilepsy.org.uk) are a fantastic support, as are facebook groups where you can get lots of been-there-done-that advice from parents. Make a list of questions for your neuro appointment and ensure they are open to you coming back with more questions after the appointment if you have them.

bowbear Tue 28-Jul-15 16:42:00

Thanks so much for your comments. Really valuable to hear from somebody in a similar situation. DS has lots of very brief absences - 2-5 seconds with eye flickers. Really hard to say exactly how many as they are so brief and only noticeable if I'm looking at him, some days it can be around 15 a day but may be more, other days I barely see any. They definitely increase and are slightly longer when he's poorly.

I've already started my list of questions and we do have a lovely consultant who I'm sure will be happy to answer any follow up queries. Just so difficult when the medication options come with so many possible complications.

I hope things work out well for you and your DD

adoptmama Tue 28-Jul-15 17:05:19

She has good seizure control with the meds. She can now go 3-4 months without seizures but I know they are far more frequent if she off schedule with her meds or ill. She does have difficulty learning (short term memory) which may be due to the epilepsy, may be unrelated or could be due to the meds. I think it is the latter as it is always worse when her meds are increased and then improves after a while. Epilepsy medications can have significant impact on learning and schools do not fully appreciate it (and I say that as a teacher). It would be very useful to put together an info pack for the school on his epilepsy, how it impacts him and how seizures out of school can impact him (tired etc or difficulty getting reading etc done) and, if he starts meds, inform them of possible side effects too.

Good luck with everything. It can all be a bit daunting at first but, like everything else, it becomes manageable and normal. DD is 5.5 and once I measure the meds, she doses herself with them quite happily now (after initial fights over horrible taste). Kids will get used to a medication routine quite quickly.

Feel free to ask any other questions if you think it will help.

bowbear Wed 29-Jul-15 11:04:53

Oh it's really depressing me the thought of having to put him on medication that can have such worrying side effects. I've just been reading up about Charlotte's Web and it will be interesting to see the outcome of the current studies but I doubt it will be available here any time soon.

Does you DD understand why she is taking medication?

adoptmama Wed 29-Jul-15 12:26:35

She does understand why and she is ok taking it. Sometimes she says it is unfair that no-one else has to take it. In the beginning she hated the taste of Keppra and I thought of diluting it into juice but actually after only a couple of days she was fine with it.

I agree, it is a depressing choice to make and I wish the UK were open to Charlotte's Web or similar (you can follow Realm of Caring who make it on Facebook, and there are a few great TED talks by one of the Stanley brothers who created it - like this one www.youtube.com/watch?v=ciQ4ErmhO7g).

On the other hand I do consider it a good thing that we have these options. Without the medications DD would not have seizure control and every seizure has the potential to damage her brain. My friends DD has the same type of epilepsy as my DD, and she nearly died once from a seizure, so even meds with side effects are better than no meds!

I think ultimately, if he is having so many seizures a day, you are going to need to medicate him to get seizure control. But remember a very high percentage of children will outgrow childhood epilepsy, so there is a lot of hope for improvement in the future.

bowbear Wed 29-Jul-15 15:47:22

Wow! I've never looked into it before but having done a little reading, and watched those talks it is staggering that medicinal cannabis is not being tested more and considered as an acceptable alternative to mainstream pharmaceuticals.

Whilst I'm so grateful that DS doesn't have a major seizures and is developmentally where he should be, I hate that my bright, fun little boy is likely to struggle at school, either due to unmedicated seizures or side effects from the treatments. I'm sorry to hear about your friend's daughter, I hope she is doing better now.

How did you explain the epilepsy to your daughter? Sorry to be asking so many questions - I don't know anybody else who has experienced this personally.

adoptmama Wed 29-Jul-15 16:04:56

I managed by pure luck to catch a photo of her having a seizure and showed her that. She knows she has 'lepsy' which make a funny thing happen in her brain. And that is about it. As she gets older obviously we need to add more in, but for the moment she doesn't ask much about it.

And no worries - ask away smile

bowbear Wed 29-Jul-15 17:05:18

Thanks so much for taking the time to share your experiences, I really do appreciate it. I will see what comes from our consultant appointment in a few weeks. x

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