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Old 04-11-2013, 12:00 PM   #11
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Re: So my son just has a seizure......... :'(

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Well that's scary. So he had an EEG 8 months ago? Sometimes EEGs don't show seizure activity so they do a sleep deprived EEG. Any chance he hasn't had much sleep the past few days? Sometimes seizures happen because of lack of sleep in someone with a seizure disorder. I had seizures as a child and have episodes when I don't sleep for more than 6 hours.

I would demand a full workup with a neurologist. It isn't fair that they are not giving you answers. I can't believe they just sent you home! . Here they would admit and do testing in hospital for a diagnosis for sure.
His sleep patterns seemed normal to me. I'm hoping the children's hospital calls me and says bring him in for another. I'd rather be safe than sorry This is so scary!! How do.I keep myself together? He's just so small I hate that this is happening and the look of it happening is tearing me up!! If this makes any sense I'm sorry I'm super emotional right now!

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Old 04-11-2013, 12:08 PM   #12
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Re: So my son just has a seizure......... :'(

I would have him see a cardiologist. Even if they say it is not needed. My son was diagnosed with "breath holding syndrome" but, there is something called Long Qt Syndrome, which can look very similar. We too, saw the neuro and were told he is fine. Now 2 years later I am reading bout families who have lost there children to misdiagnosis. Even though the ped/ER docs told me that a cardio eval was not necessary, I demanded it. We have an appt. Monday. Chances are, he just has breath holding syndrome, but I would rather have everything checked out to be sure. I feel your pain about this, it is the scariest thing to see.
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Old 04-11-2013, 12:14 PM   #13
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Re: So my son just has a seizure......... :'(

I have no experience or advice, but I'm sorry this is happening. I would be a mess too, if I were in your position. Hugs, mama!!!
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Old 04-11-2013, 12:28 PM   #14
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Re: So my son just has a seizure......... :'(

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I would have him see a cardiologist. Even if they say it is not needed. My son was diagnosed with "breath holding syndrome" but, there is something called Long Qt Syndrome, which can look very similar. We too, saw the neuro and were told he is fine. Now 2 years later I am reading bout families who have lost there children to misdiagnosis. Even though the ped/ER docs told me that a cardio eval was not necessary, I demanded it. We have an appt. Monday. Chances are, he just has breath holding syndrome, but I would rather have everything checked out to be sure. I feel your pain about this, it is the scariest thing to see.
It is it is terrifying. Thank you for this I will definitely bring this up with his doc. And if he doesn't call me back by this afternoon I am calling in the morning. He is usually pretty good though. He's the only ped. I let all of my kids see and he's seems them since birth until now. I thank god that he is so excellent or else this would be worse right now! I know we were put on Urgent so I'm hoping to hear something soon.
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Old 04-11-2013, 12:34 PM   #15
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Re: So my son just has a seizure......... :'(

Praying for you Samantha. That would be SO scary! I have a friend whose 8 year old had a seizure for no reason at all last year....and hasn't had one since.

If it makes your day an once brighter, I should finish your diapers today and get some fluffy mail on the was to you tomorrow!
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Old 04-11-2013, 12:47 PM   #16
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Re: So my son just has a seizure......... :'(

Hugs, mama.

My son has seizures as well and had his first when he was 18 months old. We have had two EEGs that have both shown up clear, have a third pending and will be going to see the neurologist and have an MRI.

We are just a bit ahead of you in the process of diagnosis so I don't know too much more than you but feel free to ask any questions or just pm if you need support.
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Old 04-11-2013, 12:49 PM   #17
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Hugs, I can only imagine how scared you were/are.

I hope you get some answers.
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Old 04-11-2013, 12:59 PM   #18
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Re: So my son just has a seizure......... :'(

My dd had seizures. She is currently being weaned off her meds after being seizure free for over a year & her EEG at the end of March being "normal". The only advise I have is get it on camera if you can. This will help the neuro to see what is going on. During a seizure you just make sure the child is safe... can't roll off furniture or bang on anything. There really isn't anything else to do so you can try to get it on camera. Also start counting or time it so you can tell them how long the seizure lasted. It's normal for the child to be disoriented afterwards for a short time. You need to get an EEG. (This is where they put wires on the head or a cap. (wires directly to the head is better than a cap for small kids.) It is not painful.


Her is a picture of my DD getting her EEG in March. (taken after) As you can see, she looks pretty happy afterward. The whole thing from putting on wires etc from start to finish was about 1 hour. The eeg will measure the brain activity and tell where or if there is an abnormality. My DD also had an MRI when she was little to check to see if her brain's structure was normal.
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Old 04-11-2013, 01:12 PM   #19
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Re: So my son just has a seizure......... :'(

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My dd had seizures. She is currently being weaned off her meds after being seizure free for over a year & her EEG at the end of March being "normal". The only advise I have is get it on camera if you can. This will help the neuro to see what is going on. During a seizure you just make sure the child is safe... can't roll off furniture or bang on anything. There really isn't anything else to do so you can try to get it on camera. Also start counting or time it so you can tell them how long the seizure lasted.
I know it's not a mom's natural instinct to grab a camera when your child is in distress, but I have to second this. While I haven't dealt with seizures, having a video of the symptoms DRASTICALLY shortened the time it took them to diagnose things for my son because they could actually see it, instead of just guessing. But, I really hope you don't have to go through it again.... I can't imagine how terrifying that must be.
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Old 04-11-2013, 01:37 PM   #20
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Re: So my son just has a seizure......... :'(

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Originally Posted by weesej View Post
Praying for you Samantha. That would be SO scary! I have a friend whose 8 year old had a seizure for no reason at all last year....and hasn't had one since.

If it makes your day an once brighter, I should finish your diapers today and get some fluffy mail on the was to you tomorrow!
Thank you Jen! I do love some fluffy mail.

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Hugs, mama.

My son has seizures as well and had his first when he was 18 months old. We have had two EEGs that have both shown up clear, have a third pending and will be going to see the neurologist and have an MRI.

We are just a bit ahead of you in the process of diagnosis so I don't know too much more than you but feel free to ask any questions or just pm if you need support.
Thank you!

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Originally Posted by UnderTheStars View Post
I know it's not a mom's natural instinct to grab a camera when your child is in distress, but I have to second this. While I haven't dealt with seizures, having a video of the symptoms DRASTICALLY shortened the time it took them to diagnose things for my son because they could actually see it, instead of just guessing. But, I really hope you don't have to go through it again.... I can't imagine how terrifying that must be.
I think I remember them telling me this when he had similar things happen when he was a newborn/infant. I will keep this in mind if it happens again And he did have those wires on the head test 8 months ago. Along with seeing a heart specialist, ear nose and throat specialist, anf some others i cant think off the top of my head right now- theyre in that thread from 8 months ago. And that procedure where thy went in with the tiny camera to check his inner anatomy. They found nothing. Would they repeat all of those tests again 8 months later?
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