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Abigail's Dr wants an EEG

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We are dealing with something new. Abigail and I were on our way

home from dropping off my oldest daughter at school and she stopped

talking mid sentance, her eyes started fluttering and she wouldn't

respond to me for almost a minute. My heart started pounding, and

all the alarms in my head went off. I called her doctor and they

want her to have an EEG. Which was explained to me, and I understand

fully. My question is how many of you deal with this? What is your

experience? How did you feel about it in the beginning, how do you

feel about it now? Abigail's doctor said it could have been braught

on by her ear infection. Abby will be going in tomorrow to have her

ear infection rechecked. Just to make sure there isn't something

more going on there.

I understand that in the grand scheme of things this is most likely

very small. I just want to say...enough already!

Thx for listening.

Myst

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Myst,

Any new thing with Abigal is going to be frightening. Heck, this whole disease is frightening. It sounds like Abigal probably had a seizure of some kind. Audrey had many of these types of seizures and they never showed up on her EEG's or the MRI. Unfortunately her advanced to total body and system type seizures and of course then they showed up on the tests. She has been on meds for these for nearly two years with some adjusting now and then. In the beginning she was started on a couple of anti-seizure meds that did not go well with her. She still has seizures daily but at least they are not what we call the "really bad" ones. Remember we are all here for you even if just someone to vent to or have your fears validated. We have all been there.

Hang in there,

Kathy, grandma to Audrey, 3 yearsmr_lucy wrote:

We are dealing with something new. Abigail and I were on our way home from dropping off my oldest daughter at school and she stopped talking mid sentance, her eyes started fluttering and she wouldn't respond to me for almost a minute. My heart started pounding, and all the alarms in my head went off. I called her doctor and they want her to have an EEG. Which was explained to me, and I understand fully. My question is how many of you deal with this? What is your experience? How did you feel about it in the beginning, how do you feel about it now? Abigail's doctor said it could have been braught on by her ear infection. Abby will be going in tomorrow to have her ear infection rechecked. Just to make sure there isn't something more going on there. I understand that in the grand scheme of things this is most likely very small. I

just want to say...enough already! Thx for listening.MystPlease contact mito-owner with any problems or questions.

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Hi Myst,

We have been dealing with seizures since 18 hours old. At first it

was really scarry. It is hard to watch your child sieze. You don't

know how long they are going to last, that part never gets any

easier. After awhile though you have a plan as how to handle the

seizures and that helps. You end up focusing on what you can do for

your child instead of having the helpless feeling. Having one

seizure does not mean she has a seizure disorder. An EEG will help

to determine if she is having seizures or not. Again though having

one seizure does not mean she has a seizure disorder and she may not

be put on meds for it. Things to note if it happens again- anything

different in her routine, food, lack of sleep, over exertion, etc;

which way did her eyes roll, were the arms legs involved, what came

first, arms or legs starting to jerk, length of time it lasted. All

of these will help the doctor determine if the seizure is coming from

the same part of the brain each time and if they are involving other

parts of the brain. It will also help the doc's determine what

seizure drug to give if they decided to give one. Different drugs

work for different types of seizures. I hope this helps. I think

the fear of the unkown is what catches everytime. We think we have

things under control and then something happens to through it off.

Let me know if I can answer any questions. We have been dealing with

seizures for 5 1/2 years.

Geri-Anne and Wyatt, Complex I-

-- In Mito , " mr_lucy " wrote:

> We are dealing with something new. Abigail and I were on our way

> home from dropping off my oldest daughter at school and she stopped

> talking mid sentance, her eyes started fluttering and she wouldn't

> respond to me for almost a minute. My heart started pounding, and

> all the alarms in my head went off. I called her doctor and they

> want her to have an EEG. Which was explained to me, and I

understand

> fully. My question is how many of you deal with this? What is your

> experience? How did you feel about it in the beginning, how do you

> feel about it now? Abigail's doctor said it could have been braught

> on by her ear infection. Abby will be going in tomorrow to have her

> ear infection rechecked. Just to make sure there isn't something

> more going on there.

>

> I understand that in the grand scheme of things this is most likely

> very small. I just want to say...enough already!

>

> Thx for listening.

>

> Myst

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