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jenniepepsi · Apr 5, 2011, 02:17 PM

I am SO CONFUSED. We went for a 24 hour EEG, where they video and sound record my 7 year old daugter the WHOLE time we are there, and I push a button anytime I notice what I believe to be a seizure. Her doctor and her nerologist is testing for absence seizures. We checked in early Monday morning, and just got home 20 minutes ago. But now I am left with more questions :(

We caught 3 episodes on the monitor and the doctor looked at them and said they didn't trigger seizure activity on the EEG monitor. But she is still having them, she had a bad one that lasted 8 seconds in the car. The doctor gave me no other answers other than 'its not a siezure' but no answer as to what else it could be.

So when I got home I googled around, looking for seizure activitys with normal EEG. And found that it IS possible to have a seizure with a normal EEG discharge, but the doctor didn't look into that, just said 'its not a seizure and she is not epileptic'

I looked up pictures of what an absence seizure looks like on an EEG, and EVERY time I looked at her monitor it looked like seizure activity. Which means one of 2 things to me. Either she is having them often, OR the tech did NOT hook her up properly.

The hospital was WONDERFUL. I have NO complaints about the hospital or the staff or the doctor at all. But I'm just left with no answer, more questions, and simply told to follow up with her doctor!

I am thankful that she is not having a life threatening or dangerous type of seizure. But I am still wanting answers and I have no idea how to get them. :(

Any ideas? Advice? Should I get a second opinion at another hospital?

J_9 · Apr 5, 2011, 03:42 PM

I'm sorry Jennie, I don't know how to read EEGs though.

Is there a possibility that you are looking for something that really isn't there?

TBH, your concerns about your baby's health are starting to concern me.

jenniepepsi · Apr 5, 2011, 03:49 PM

Its possible I'm looking for things that aren't fair. And I know I do worrie a lot. It just worries me that she has the 'staring episodes' and they are scary. I would feel so much better if I could know what it is, one way or another. I don't WANT it to be seizures but at least then I would know. But then also no one has even told me its normal to break off and stare with her eyes fluttering, and then not remember doing it.

J_9 · Apr 5, 2011, 04:43 PM

But she has Aspbergers (sp), right? Isn't this somewhat common in the autism spectrum?

J_9 · Apr 5, 2011, 05:02 PM

Originally Posted by jenniepepsi

so when i got home i googled around, looking for siezure activitys with normal EEG. and found that it IS possible to have a siezure with a normal EEG discharge, but the doctor didnt look into that, just said 'its not a siezure and she is not epileptic'

i looked up pictures of what an absence seizure looks like on an EEG, and EVERY time i looked at her monitor it looked like siezure activity. which means one of 2 things to me. either she is having them often, OR the tech did NOT hook her up properly.

Jennie, I really don't mean to be rude here, but have you been trained to know what seizure activity looks like? These people are well educated, trained, certified and licensed to know what they are looking for. They didn't learn this by using the internet/google.

Originally Posted by jenniepepsi

which means one of 2 things to me. either she is having them often, OR the tech did NOT hook her up properly.

OR you haven't been trained to read an EEG and are looking for something that actually isn't there.

I understand being worried and concerned about the health of our children as I have 4 of my own and 2 grandchildren. But sometimes making a mountain out of a molehill can be just as, if not more, dangerous as if something is actually wrong.

Wondergirl · Apr 5, 2011, 05:26 PM

Jennie, Jennie, Jennie, relax. This is Auntie Wondergirl here to tell you this is perfectly normal with Asperger's. My husband does it (drives me nuts!), my son does it, the guy with Asperger's in my writers' group does it. It's unnerving to anyone who doesn't know what's going on, especially if the person happens to make a staring kind of eye contact or is staring at nude women (or men).

The person doing this doesn't even realize he's doing it, does it for only a short time with eyes fixated and mind elsewhere or vegetating. This is just another part of an Asperger's person being able to use his brain in ways that we cannot, like many can "think in pictures" and remember details of what they've read, for instance.

These episodes won't hurt her. Work out a signal with her to bring her "out" or just tap her on the shoulder to bring her back to the real world.

Let me know if you want more details. Meanwhile, celebrate Ayla's Asperger's. She's an interesting and unique little girl!

jenniepepsi · Apr 5, 2011, 06:02 PM

Thank you WG. It makes me feel so much better knowing others do this and its 'normal' for kids like her :)

J_9, when we got there they showed me what was seizure activity and what wasn't. I wasn't concerned that they were misreading. If there wasn't any seizure activity then I believe them (and I'm relieved about it) I was just concerned that I still didn't have an answer as to what was happening to her during one of these episodes.

Alty · Apr 5, 2011, 06:18 PM

Jennie, you know that we all care about you, but I have to agree with J. I think what's going through many of our minds is that many of the issues Ayla has, aren't really her issues. Have you ever considered a therapist for yourself?

This is by no way a diagnosis, because I'm not educated enough to give one, but reading your posts throughout the years, most of them about Ayla and her numerous health issues, I've often wondered if you have Munchhausens by proxy.

This is a very real concern, at least to me it is. I've never posted it before because I knew then, as I know now, that you wouldn't take it well. But it is something that's constantly come across my mind whenever you post a new thread about another of Ayla's health issues. The poor child is simply always ill, either one thing or another, all ranges of issues.

I have two kids. Both of them together haven't had as many trips to the doctor. Sydney is a klutz, and easily injured. She's been in the hospital a few times, broken arm, stitches on her head, febral seizures, you name it. Jared is ADHD, and 12, and has had his fair share of health issues as well. Still, if I add up both of their trips to hospital or doctor, they still come nowhere near to what Ayla has been through, and that's only the stuff you actually write about here.

It concerns me. Either she's a very sick child, or there's something else going on.

jenniepepsi · Apr 5, 2011, 07:18 PM

I totally understand your concern guys I promise. I have thought about maybe I have that. My mom has munchausins its self (not byproxy, she makes stuff up for her self to see the doctor) and I have thought about the possibility that all of this is in my head. But I've never MADE her sick, or hurt her or anything like that to make her get medical attention. I'm not sure if mbp varies in degree or not. But I do see how you guys see that I over worry, over think, and take her to the doctor for every little thing. Ill talk to my doctor about it. Maybe I'm over compinsating for my own childhood, where my mother never cared if something was wrong with me or if I needed help, and I'm trying to make sure I don't do that. Or I'm just a crazy over reading mom :P lol.

Thank you all so much. I know your not trying to be mean or anything, and I really do apreciate that you guys care enough to talk to me about it and I promise ill talk to my doc about it (I have an appt Monday actually so that works out :) )

I've always known I was different and weird. My brain never works right and I never think the way other people do. But looking at it all together it does kind of seem lke something may be wrong with me rather than her.

Wow I'm rambling. Sorry lol

jenniepepsi · Apr 5, 2011, 07:27 PM

OK sorry I'm a Google fiend. But I googled msbp, and I know I am still going to bring it up with my doc, but it sounds like someone with msbp purposely makes up stuff and abuses their child to go to the hospital. That doesn't sound like me at all. I really do feel that she should be checked for whatever it is, because I'm worried about her.

Is it possible to be like a hypocondriac through your child maybe? Imagining that something is wrong and really believing it, even if it may not be anything?

J_9 · Apr 5, 2011, 07:35 PM

Oh, Jennie, I'm so glad you understand. We aren't trying to hurt you, worry you, upset you or be mean to you. It's just that, as outsiders, we hear what is going on at home with you and Ayla.

There are several problems the both of you have, including your raising, or lack thereof.

I'm glad you feel comfortable reaching out to us, but I also worry that you are seeking medical attention for Ayla to get approval from her doctors regarding your parenting skills.

jenniepepsi · Apr 5, 2011, 07:46 PM

Now THAT is very possible. I don't actually THINK that. But when we were there, every time a nurse or staff said something like 'your doing a good job mom, ask us if you need a break' I just felt like I was glowing. NO ONE talks to me like that. Ever. It DOES feel good to hear it. I don't go out of my way to get it. But it felt good. And maybe I do go after it subconciously?

J_9 · Apr 5, 2011, 07:53 PM

Please don't take offense Jennie, but will you please read this and get back to us. Please read it with an open mind.

Munchausen Syndrome by Proxy

jenniepepsi · Apr 5, 2011, 07:54 PM

No worries. I'm not offended. Ill go read it now. When I Google I don't always get reliable info *blush*

J_9 · Apr 5, 2011, 07:57 PM

It's hard to get reliable info when we Google. Don't be embarrassed.

Wondergirl · Apr 5, 2011, 08:35 PM

Originally Posted by jenniepepsi

maybe im over compinsating for my own childhood, where my mother never cared if something was wrong with me or if i needed help, and im trying to make sure i dont do that.

Jen, I am leaning toward this explanation more than the MBP. Like you said, you aren't hurting Ayla in any way to make sure she has to seek medical attention. And you know that the medical people are good authorities to seek out for help when you are concerned about something with her. And we all like to be told by our doctor that we are doing the right thing by our kids.

Do you have a good book on child care with information on medical and emotional stuff, developmental stuff? When I was raising my kids. I had one that I used so much that the pages started to fall out of it.

Ayla's lucky to have you for her mom.

Alty · Apr 5, 2011, 10:10 PM

Jennie, I'm proud of you. I know that sounds cheesy coming from one adult to another, but I am very proud of you.

I have been wanting to say something for a long time but didn't want to hurt your feelings. I'm so very glad that you saw what I wrote for what it was, concern for you and Ayla.

I'm not completely sure about the MSBP, but it's something to look into, something to have checked and ruled out. I do think there is something going on. It may not be MSBP, but I do think that you are over worrying or overcompensating for something, and the sooner you get help with it the more content you'll be, and Ayla too.

You are a good mom. You don't need anyone to tell you that. You're doing all of this on your own, you're not afraid to ask questions. I just want you to have time to actually enjoy being a mom, and not always worrying about everything. That's what being a mom is about, knowing when to be concerned, but also enjoying your kids, enjoy watching them grow and learn, without constant fear. :)

Big hug to you Jennie. I am so proud of you.

J_9 · Apr 6, 2011, 05:25 AM

I am very proud of you too Jennie. I don't think it's as deep as MBP, but again something to look into. You don't have to actually "hurt" or "cause harm" to your child to have MBP though.

I believe you are trying to give Ayla everything your mother did not give to you. You are breaking the circle of abuse and that is something to be very proud of.

jenniepepsi · Apr 6, 2011, 07:47 AM

Sorry guys. I was so tired (we didn't sleep at all at the hospital Monday night) so I went to bed before I saw you replied.

And thank you. I don't feel like a great mom. I still make SO many mistakes. But I am doing SO much better than before. A while ago I had the urge to go thro all my message boards and see old posts. The oldest ones I could. And I got to tell you, 5 years ago, I was a WHINER. I whined and complained about EVERYTHING. And I didn't listen to anyone. I thought I knew everything.
As hard as it was to live at my parents house until last year, I honestly think if I moved out of their house as soon as I had Ayla, I very well may have gone exactly the way my mother did. But living at their house, and seeing my moms, dads, and sisters, behavior from the eyes of an adult and mother, I think that's what kept me from turning into my mother. I absolutely will raise my voice to her, and in the past before knowing of her aspergers, I did spank, and take things away. But I have never, and will never yell and scream and holler and call her stupid or dumb or *the R word* or ANYTHING like that. Nor will I ever do more than a smack on her bottom or hand, nor would I ever make her go hungry just to prove a point, or break her toys, or ship her off to live with family, or leave her at the store or even worse, ignore her for days at a time.

Wow sorry about that, went off on a side road.

Anyway, thank you all so much, I am going to talk to my doctor about all of this Monday. I have the appointment to talk about seeing a psychotherepist for all this.