Countdown to 1st Neuro Apt

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My nine year old son had his 1st two seizures (that I am aware of anyway) in mid December. The first one, I only saw his mouth moving, him making weird gurgling noises, and a whole lot of saliva. The second one was a tonic clonic (whole body shaking, followed by period where he just lay there breathing hard). Both seizures happened in the early morning around 5:30-6:00.

He had an MRI (normal), EEG (abnormal with lots of activity, but our ped was not confident in explaining the results, so told us to wait until we saw the neuro), and bloodwork (normal). While we waited for the neuro apt, the ped prescribed leviteracetem (not sure about spelling, but generic for Keppra).

So far so good on the Keppra generic. No more seizures, although he does have some twitches in his sleep. These happen consistently and ped doesn't know what to think of these.

So, all of this is new and scary. He has never had any health problems. I am trying to figure out what all I should ask the neuro when we finally have our appointment in 6 days. Any advice on what to ask or what to expect?

Thank you!
 
Hi underapileofbooks, welcome to CWE!

Below are few questions to consider:

1. Is there any sense of a primary cause for the seizures? (A primary cause would be something like genetic issues, head trauma, etc. The majority of epilepsy cases don't have a clear cause, but it doesn't hurt to ask. The neuro will most likely ask about any family history of seizures or migraine.)

2. What about the twitches? Could they be seizure-related? (Some twitches are a form of seizure called myoclonic). Would it be worth having an overnight EEG/sleep study done?

3. What things should you look out for in terms of Keppra side effects? (For instance, Keppra can have mood-related side effects, so if your son suddenly gets cranky it can be helpful to know why).

4. Assuming he remains seizure-free, how long should he stay on medication? How often does he need to see the neurologist?

5. Should you inform your son's teachers or friends? Is he allowed to play sports? etc.

6. Aside from medication, what other steps should you take in regards to your son's health? Are there any recommended changes to his diet, sleep habit, activities, etc.

7. And most important: How do you get in touch with the neuro if you have more questions after the appointment, or if there is a sudden change in your son's health?

It's a good idea to write down any questions before heading into the appointment, and to have someone write down the answers as well. Don't leave the appointment if you're unclear on anything.


Hope this helps,

Best,
Nakamova
 
I hope the appointment goes well -- keep us posted!
 
Nakamova, you are the best! That is the most clear, concise, and yet thorough list of questions I have ever seen for dealing with medical professionals about this issue.
 
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