(for Gigi/na) Re: febrile seizures and Apraxia?

[Guest guest]

I just replied to your first post on this subject and now I've read

this one. So most of my last post encouraging you to get an EEG is

irrelevant since you already have one.

Let me write to give you some direction and some things I've

learned. As you can read in my last post, we've been through some of

these things too. I'm no expert on all this, so clarify ALL these

issues with a Doctor.

The bottom line: Don't worry too much. Hang in there. Ask tough

questions and write down the answers. Be agressive. Do your own

research. Talk to other parents.

More thoughts:

1) There is a childhood epilepsy list on . Join it.

Here is the link: childhoodepilepsy/

2) There are many people who have seizure disorders which are almost

completely controlled with medication.

3) There are also many children who have seizure disorders so

difficult I cry reading their stories -- and I realize in context how

lucky my son is.

4) Clearly, seizures can impede development. If there are extremely

frequent seizures, delays can be significant. My wife knows another

mom at therapy whose child had several seizures a day for several

months -- these seizures are under control now (I think ONE in the

last six months) -- her child is VERY delayed, because it is hard to

learn and retain when your brain is " rebooting " frequently.

5) I too, go through episodes of " worst-case " scenarios. I've

prayed to God that I be afflicted with whatever our son is dealing

with and that he be blessed with the good health that I've had. But

be strong and stay upbeat as much as possible. Our outlook has been

seasoned so well by listening to the stories of struggle and success

from other parents at Cade's therapy.

6) MRI's are a bit scary. Your son will need to be sedated, so make

sure they have someone on-site who can be there in the rare case of

problems (look at the waiver you have to sign for anesthesia --

scary!). MRI's make tons of noise, but they're valuable to the

neurologists so you've got to do this first one, for sure.

7) Your MOST IMPORTANT question to your neurologist is about your

son's EEG. Ask " does the EEG just show irregular waves, or it is

showing current seizure activity? " You need to know whether your son

is having many small, localized seizures. Odds are that your EEG was

showing irregular waves and NOT active seizures. But this is vital

for you to find a direction.

8) If your son's seizures become frequent, the seizure control meds

out there are diverse and one is bound to be helpful. But they all

bring side effects. Our son was on Phenobarbital for 3 mos. and at

first he was very dizzy. His occupational, physical, and speech

development all but stopped.

9) Leverage your son's seizure situation to get more speech

therapy. Even if the doctor suggests the seizures " only might " be

contributing to his learning delay, push for an Occupational, Speech,

or Physical therapy evaluation and prescriptions for therapy. With

the seizures AND development delay, insurance companies are more

likely to authorize the expense. If my son hadn't had the seizures

and only had his moderate occupational delays and significant speech

delays, I can guarantee insurance would be balking at the one-on-one

therapy we're getting.

Best,

Rager

> Hi Suzi,

> we haven't even had the mri yet! still waiting to get the

appointment.

> we just found out the eeg was abnormal 2 days ago. i'm just trying

to

> hold on to my sanity here and not imagine the worst case scenario.

> if he's having seizures aside from the 2 febrile seizures, we can't

> see them. if he is having absence seizures that small, then how

> can they know if those are contributing to his delays? one more

> question (sorry - i'm losing it) is; does an abnormal eeg always

mean

> seizure activity or could it mean brain damage without seizure

> activity or something else?

> how old are your daughters? and how is your speech delayed daughter

> progressing?

> thanks for responding and good luck!!

> na

>