hi i've just this week discovered my son has gelastic (and sometimes dacrystic seizures). he is 6 years old and he has had them since he was about 1 yr old, only when woken abruptly or when running a fever, so just 4 to 10 times a year. we are in a rural area of Australia and i haven't even spoken to my GP yet as we homeschool and i never get a chance to be separate from my kids! GP is an hour away, hospital 2 hrs, proper facilities are a full day's drive away. he doesn't seem to remember the seizures except sometimes as he comes out of it he asks why he was laughing, so i haven't told him anything yet. has also spoken this week and a few times in the past of hearing voices speaking very fast and shouting (in the days around him having the seizures), which worries him.
new to everything, my son has gelastic seizures
- Thread starter aussie
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one other comment.. not saying anything to kids can be scarier (for the child!) than just acknowledging something doesn’t sound right. of course there are different appropriate responses for different ages but I’ve always reassured my kids that I will be there for them, we will check anything odd out, and that we will deal with anything together. that doesn’t mean they get a pass on having to learn how to cope or advocate for themselves as they get older, I do give them my age and cognitive appropriate expectations that they’ll be the primary driver of their doctor patient relationship and build their skill sets along the way. my 10yo was shocked to learn that I expect her to do the most talking during her specialist appts by the time she’s 14. I explained that she is already working on the skills for that right now. I also explained that it is so she has enough practice communicating with docs by the time she ages out of the children’s hospital. and at the same time I reiterated that I will be there for her.
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so he hasn’t been diagnosed by a pediatric neurologist? your focus with a gp is to get the ball rolling on any early tests and get a referral to a pediatric neurologist or better with a pediatric epileptologist (a neurologist with extra training in seizures). if it really is gelastic seizures from an HH, you’ll want an experienced neurologist & to consult surgeon and this is a rare thing so you may have to travel much much farther than the closest hospital.
yes he hasn't seen a neurologist yet, lots to work on this week. as of just now my GP has seen a video i took of his most recent episode and believes the seizures need investigating.. i'm telling him tonight or tomorrow since it is confirmed will be going ahead with MRIs etc, just waiting for the right time.
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Hey aussie, welcome to CWE!
We have some other aussie members, so you're in good company. Depending where you and they are located, they may have tips about epilepsy specialists.
I agree with Hobbes that it might be worth tracking down a pediatric neurologist as you start to get a handle on what's going on.
Below are a few threads form the CWe archives that might be of interest:
http://www.coping-with-epilepsy.com/forums/f20/hello-gelastic-seizures-coping-13245/
http://www.coping-with-epilepsy.com/forums/f20/anyone-else-have-gelastic-seizures-im-new-site-25334/
We have some other aussie members, so you're in good company. Depending where you and they are located, they may have tips about epilepsy specialists.
I agree with Hobbes that it might be worth tracking down a pediatric neurologist as you start to get a handle on what's going on.
Below are a few threads form the CWe archives that might be of interest:
http://www.coping-with-epilepsy.com/forums/f20/hello-gelastic-seizures-coping-13245/
http://www.coping-with-epilepsy.com/forums/f20/anyone-else-have-gelastic-seizures-im-new-site-25334/
thank you! the internet is awesome for information and support, i'd be lost without help! i'm in SE Qld, a full days drive away from brisbane which would be the nearest large hospital i'm guessing. i'll be out of internet/phone range for a few days while visiting my mum in the bush, but visiting my GP when i get back and will surely be back on here asking more questions 