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Old 07-07-2006, 10:08 AM   #1
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DD Diagnosed with Epilepsy (help and Long)

My 16 month old daughter just got diagnosed with epilepsy about 1.5 wks ago
It started back in April when she wasnt feeling well and had 3 seizures in 1 day. She tested + for Rotavirus so they said the seizures were caused from that and once its out of her system she wont have anymore seizures.

That is until June 25th when she suddenly dropped not even 10 mins after she woke up in the morning.
She ended up being admitted into the hospital and they did an EEG and MRI. there was an "abnormality" in the back of her brain but it was still in the normal variances and since she is right on schedule developmentally they are not concerned.
They sent us home with medication she has to take 2 times a day
Then this last tuesday (July 4th) she had 2 breakthrough seizures. They doubled her dose of meds and sent us home.
So needless to say i am a TOTAL mess right now.
I am pregnant right now, due in 6wks. the meds are making her very aggressive and sometimes almost uncontrollable. I know with time that will pass.
Then yesterday i suspected she had another seizure while she was taking her nap, and i missed it. I have a bed made up on the floor where i can watch her, and i never walked out of the room for more than 30sec-1min and thats ONLY if i HAD to ::sigh::
She is sleeping in my bed with me, but again being due very soon, and the lack of room in our bed. nights have not been well around here. I am a wreck right now
Does ANYONE know any monitors that i can put in her bed that will detect seizure activity while she is sleeping?
ive never witnessed one while she is sleeping, so i dont even know if they are the same as her usual ones.
My biggest fear is that she is a belly sleeper- always has been, and if she goes into a seizure while on her belly, what if she buries her face? and also immediately after she comes out of one she goes into a deep sleep

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Old 07-07-2006, 10:09 AM   #2
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Re: DD Diagnosed with Epilepsy (help and Long)

mama - i really don't know anything to tell you. for you and your dd
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Old 07-07-2006, 10:19 AM   #3
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Re: DD Diagnosed with Epilepsy (help and Long)

Wow! I am so sorry to hear this mama!

Ive seen a couple monitors that are like the TV kind and you can see your child. Look on Babies R Us's website - I forget what its called Angel something or other. Pricey, but I think in your situation definitley worth it.
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Old 07-07-2006, 10:22 AM   #4
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Re: DD Diagnosed with Epilepsy (help and Long)

I'm so sorry to hear about that and can't imagine how frightening this must be for you... I can reccommend this monitor
http://www.nextstepbabymonitors.com/...abymonitor.htm

I have this one and it's nice b/c you can see your child and at any sound or movement in the sheets, etc. the screen will pop on at night... I really love it.
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Old 07-07-2006, 10:46 AM   #5
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Re: DD Diagnosed with Epilepsy (help and Long)

my 17 month old has seizures. He actually isn't medicated for them. They say he might even outgrow them. There's an Angel Care monitor that will detect stillness, so it would go off after the seizure for that deep sleep stage or if she buried her face enough to pass out. Not ideal, I know, but thats something. We were told though that the main thing to deal with is safety (especially around water). Its VERY scary initially, but I have to say, as awful as this sounds, you get used to it. So do the kids. Loch can feel them coming usually, at least the big ones, and will lie down before they happen.
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Old 07-07-2006, 11:50 AM   #6
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Re: DD Diagnosed with Epilepsy (help and Long)

Quote:
Originally Posted by geckoed
my 17 month old has seizures. He actually isn't medicated for them. They say he might even outgrow them. There's an Angel Care monitor that will detect stillness, so it would go off after the seizure for that deep sleep stage or if she buried her face enough to pass out. Not ideal, I know, but thats something. We were told though that the main thing to deal with is safety (especially around water). Its VERY scary initially, but I have to say, as awful as this sounds, you get used to it. So do the kids. Loch can feel them coming usually, at least the big ones, and will lie down before they happen.

Ive gotten used to the seizures itself (she has had 4 in the last 1.5wks), and i can stay calm, its just my nerves of having to walk out of the room, or sleep at night not knowing when/if another one will come on.
I assume she can feel them come on, but she hasnt figured out that she has to sit down. the very last one she had, she happened to be sitting when it hit, and i grabbed her and put her on the floor, but the other ones she was up walking around playing, being herself, then just drops.
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Old 07-07-2006, 05:45 PM   #7
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Re: DD Diagnosed with Epilepsy (help and Long)

so sorry serena
hugs to you and
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Old 07-07-2006, 09:37 PM   #8
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Re: DD Diagnosed with Epilepsy (help and Long)

Im so sorry, epilepsy is no fun!

My almost 7 year old has seizures. She has lots of them....She has been having them since she was about 18 months old. Can I ask what kind of seizures your dd has and what medication she is on for them?

Alot of the meds they use in kids have some behavior changes assosicated with them. In my experience, alot of times with anticonvulsants its trial and error to find the right one that will control the seizures with a minimum of side effects.

Also, how long are her seizures lasting? Does she have breathing issues during them? Is she vomitting?
I know it doenst sound right, but if they are lasting less than a minute or two and she is breathing and not vomitting then I think she is ok and you dont have to worry so much about missing one. Also, our neuro has told us many times that lack of sleep or disturbance in sleep scheduele can aggrivate seizures and make a child prone to have more... something to keep in mind as you mentioned that you guys were having nighttime issues.
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Old 07-10-2006, 05:32 PM   #9
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Re: DD Diagnosed with Epilepsy (help and Long)

I'm so sorry to hear this. My mom has epilepsy and I've witnessed many seizures and its been harder on me to watch my mom having a seizure than my own kids getting stitches and staples! I know how serious this condition can be and that meds suck! I had an undiagnosed (but deemed atypical eclamptic) seizure 10 days after having my 3rd ds and was on Dilantin for a few months. My mom is on something now that was horrid to start out with but now only causes her to have confusion and a hard time learning new things or staying focused. She had a severe reaction to something previously and was having hives and internal bleeding. The med in between made everything taste metallic and she lost 50lbs in a matter of a 6wks. Its been quite a battle and they were afraid I had epilepsy after my seizure which in turn would make it possible for my kids to have it passed down as well.
My 4th son has Breath-Holding Spells and seizures are often linked with these and he's passed out on several occasions from the BHS. I panicked the first 5 times, even called 911 a couple times, then once I diagnosed it and took him to the Ped who agreed with the diagnosis things got easier. I was able to know what to do, what worked to prevent it from happening and he also goes into a deep sleep after a BHS resulting in unconciousness as well. Its never fun to deal with and I'm so sad for you. I hope that you find a med that works for her with the most effictiveness and least side effects.
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