My three year old daughter is having seizures. :/

[melodysmom]

Hi guys...

I've joined because I'm trying to figure stuff out for my three year old daughter, because she started had her first seizure almost a month ago and then two more two days ago - one of which was 15 minutes long and the ER had to give her a shot to make it stop... We're in the diagnosis process and my head is spinning. My normally healthy kid who has never had any serious illness or hospitalization, never had a fever above 102, never had an ear infection, is suddenly having seizures and is also possibly autistic.

I don't know anything about seizures, I don't know what to think and I don't know what to do.

So... Hi.

 

[Nakamova]

Hi melodysmom, welcome to CWE!

I'm sorry this is happening to you and your daughter. There are a lot of unknowns with both autism and seizures, so it can be tough to get a handle on what's going on. One thing both disorders share is that they exist on a spectrum — that is, the severity varies quite a bit among those affected, and there can be very mild forms of both.

With epilepsy, the standard procedure is to confirm diagnosis via EEG, and then start treatment, usually with anti-seizure drugs. It's ideal if your daughter's treatment team includes both a pediatric neurologist and an autism specialist, so that they can be on the same page when it comes to symptoms, treatments and what to expect.

Best,
Nakamova

 

[melodysmom]

Hey there.

It looks like the only dr locally that specializes in autism no longer accepts Medicaid. She hasn't had an EEG done yet, but the pediatric neurologist did tell them to prescribe her Keppra.

We're also looking at PICA.

And I'm looking at service dogs.

It's all I can do. Everything else is waiting. I might as well do the one thing I can. :/

And the local head start program won't administer diastat to stop a seizure. So, I'm scared to have her start school in September.

 

[Nakamova]

Fingers-crossed that her seizures aren't a problem come September. In the meantime, is there someone you can talk to at the Head Start program? Maybe the supervisor's supervisor would be more responsive.

As with all the anti-seizure meds, Keppra works for some people, not for others. It's known to cause moodiness and crankiness ("Kepprage"), so if you see a change in your daughter's behavior, the Keppra is a likely culprit. One thing that can help with that particular side effect is a B6 supplement.

When you say PICA -- do you mean the disorder that can involve chewing dirt, paper etc.? If that's the case, she may have an iron-deficiency (which can cause seizures), so an iron supplement would be in order. Are they testing her for vitamin/nutrient deficiencies?

 

[melodysmom]

Not yet - I just called them about the possible PICA today. Her iron should be fine because chicken has iron in it and that's basically all we eat now for dinner. Her behavior isn't changing much at the moment, just the Keppra seems to act as a stimulant instead of making her drowsy.

Without being a doctor myself, I'm wondering if it's stress induced epilepsy, or if her difficulty going to and staying asleep has anything to do with it.

 

[Nakamova]

You can have pica even if you get plenty of iron in your diet -- the deficiency comes from a problem in the way it gets absorbed.


An overnight EEG might be useful -- that could show what's happening when she sleeps. She could be having sleep seizures, or other issues that are interfering with the quality of her sleep.