I hope it is ok if I post here, I am not sure what else to do.

My daughter is 6 years old. She is the happiest kid I have ever seen, very outgoing and talkative, and very bright. She has always been really healthy, just typical stomach bugs, colds, the occasional ear infection, and she wears glasses for a slight astigmatism. In June she started getting bad headaches every few weeks. The Dr started her on allergy medicine. The headaches started to get more frequent, and in September they tweaked her prescription on her glasses. I was hoping that would help, but than more and more headaches.


She was just diagnosed in November with Auditory Processing Disorder(APD). Basically it means that her hearing is wonderful, but her brain doesn't process/takes longer to process things. She asks us to repeat ourselves a lot, has a hard time following multi-step directions, and has a REALLY had time hearing when there is other noise. She is so smart, but was struggling with school(1st grade), which is how I knew there was something going on.

I thought maybe the strain of how hard she has to focus with her APD was making her head hurt, but she was getting them almost every day. The Dr's pushed and got her in for an MRI, which was totally clear.

A few weeks ago some unusual issues started. When my daughter woke up one Wednesday, she had a headache really bad, right behind/above her ear. I told her to rest, gave her breakfast and lots of water, and she didn't complain about it anymore. A few hours later as she was eating lunch, she made a frustrated noise. I asked her what was wrong, and she said the flash of light was bothering her. It was a flash of white light in her peripheral. I assumed it was a migraine, something I have zero experience with. I called her pediatrician's office, but they told me to call her eye Dr, just to be safe.

After talking to the Dr's office, and my husband, about it on the phone, my daughter started telling me about the fact it wasn't the first time she saw the light. She was saying it like I should know what she was talking about. Within an hour, she said she was seeing shapes. It only lasted like 15 seconds. I asked her what she was talking about, and again she started telling me about colorful shapes she sees that dance around, and said it like I should know what she was talking about. I ask if she sees them a lot, but she doesn't see them every day, but more than just a few times. I asked if it is only when she rubs her eyes, but she said no, she sees "falling donuts" when she rubs her eyes.

She isn't a kid that lies, exaggerates, fakes sick, anything like that. The way she said it, so matter of fact and like I should see what she saw, makes me 100% believe her. She drew a picture of what she saw, brightly colored shapes.

I took her to the eye Dr that Thursday, and she brought the picture to show them. Her eyes look perfect. The Dr said we need to see the neurologist(we had an appt scheduled for May, since it is a busy pediatric neurologist). He said since she had the clear MRI that was great news, but to get her into the neurologist.

The next morning(Friday), she started freaking out about a smell. She was saying how awful it was. I sniffed everything, and nothing smelled. It went away for about 15 minutes, then came back again. Then left again. I called her Dr, and they are trying to get her into the Dr before May. She said it could still be migraines, but it could be a type of seizures. My son has febrile seizures, and I have never seen her stiffen and/or jerk like he does. No eye movements, nothing like that.

A few days later, when we got to the grocery store, she said something about how she didn't know we were by train tracks. I asked what she meant, and she said since she heard the train whistle. There wasn't any whistle noise. We weren't by the train tracks at all.

In addition to all of this, she told me about how she is dizzy sometimes in the morning, and that sometimes when she is in bed she feels like she is on a roller coaster.

They did a sleep deprived EEG, and everything was normal with it. The neurologist honestly seemed to brush it all off as in her head. I think she thought she was faking, or at the very least exaggerating. I am 100% sure she is telling the truth. She is in the only pediatric neurologist practice, so for the time being we are "stuck" with her. I know she probably sees a lot of severe case patients, and has to be skeptical, but I wish she would listen to me.

Those things seemed to have settled down. Last week she was squeezing her hands at the store, and once again she said it like I should know, about the feeling like you *HAVE* to squeeze your hands(Actually, she just had this feeling again, sitting next to me, doing something with stickers for school. It is real, she was shaking until she did it. Too bad the EEG came off a few hours ago). The next morning she was telling me she had it while she was eating breakfast, and she felt like she didn't have hands anymore. My daughter said it starts in one hand, and goes to the other. I called the neurologist(well, the pediatrician first, who said to call the neuro), and once again she said it was probably just my daughter, and nothing to worry about, but I pushed and she ordered a 24 hour eeg.

The next day in the car, she was telling me about a feeling she got that felt like she had spiders crawling all over her head.

The last of the "weird episodes", was yesterday and today. DURING the 24 hour eeg, so this should be interesting to see the results... While she was holding the zipper on something, she felt like she was moving slowly. She was TRYING to move her arm. But she couldn't. It happened again during dinner, she was holding her sandwich, trying to eat it, but she could not move. And today while she was playing with a barbie thing, she said she was trying to make her barbie talk, and opened her mouth, but she couldn't make herself talk.

Oh, and last night in bed she said that she felt like she was sitting down on the couch, but she was lying in bed. She might have been dozing off at the time.


So to sum it up, since this is totally a novel:

1)6 years old with APD
2)Headaches before, none recently
3)Saw white flashing light in peripheral
4)Saw "dancing" colorful shapes that follow no matter which direction she looks
5)Has told us before she heard someone say her name when she was sleeping, then woke up and no one was there.(At least a few time, we figured she just hear my husband or I talking)
6)Smelled bad smells when there is nothing
7)Heard whistling when there was none
8)Feels like she HAS to squeeze her hands
9)Feels like she has NO hands
10)Felt like she had spiders crawling all over her head(no lice, bed bugs, anything like that)
11)Couldn't move her arms
12)Couldn't make herself talk


We have a call into the neurologist again based on the not being able to move her arms. And we should get the EEG results back next week. I am like 99% sure that if the eeg is normal, the neurologist isn't going to look into anything else. It was a fight to get the 24 hour eeg, I really doubt she will take anything else seriously. I just don't feel like this is all "normal" of a 6 year old. I wish I could emphasize how unlike my daughter this is. On the VERY rare times she has lied, it is about something silly(like she was playing with something when she wasn't supposed to), and all you have to do is ask once "Are you lying?" and she says "Yes, I'm sorry". But even her doing that is rare. I can't imagine her ever lying or exaggerating about anything, but especially being able to come up with the symptoms to even lie about! I am just wondering if anyone has any ideas at all?

Hi you have described both complex partial and simple seizures.

And the smells and sounds can both be what is called aura's before or
during or after seizures.

I would keep a diary of what is going on. And just keep encouraging
her to tell you everything that is going on. I would also see if the
neurologist would consider a seizure medication for the headaches.

To see if there is a chance it would help both things. Try to get a
appointment with the doctor, and go in and talk to her. Explaining
that seizures, and activity do not always appear on EEG's. And that
you would like to see if the medication would help the headaches
too.

There is a epilepsy room here. So please also go in there and copy and
paste this. So they might be able to also answer some questions.

Also the epilepsy foundation has a parents helping parents room. Please
go there and post and get some other parents. To talk to you.

Donna

Hello and I am glad your found Neuro Talk. 6 year olds don't make things like that up. Even a very imaginative child could not fake all that, so don't let the doctos brush you off. I thought of seizure related things right away. My then three year old exhibited some very strange behavior, she had some Minimal brain disfunction was what the doctors came up with. It was seizure related. she stood up in her stroller and tried to scream and nothing came out. It was like she was frozen in time. She took phenobarbitol and grew out of these symptoms after a few years. Please do keep seeing a neruo. I took Shannon to Barns Childrens hospital in St. Louis. I saw Dr, Virginia Weldon who now teaches there. Keep asking questions and seeking resolution. My daughter turned out OK in that dept. She was in special education most of her life. She did get two years of college, married with a son now. all can be OK, just don't give up when you know something is wrong. Do that journal also, and keep track of all that happens. I do wish you all the best, and I hope this turns out good for your daughter. ginnie

Thank you so much for the replies. Sorry I am slow to update.

We talked to the neurologist, and she said that it was in my daughter lying, and she needed to see a therapist since it was obviously behavioral. WRONG! She sooooo isn't a liar.

We have an appt with a new neurologist next Friday.

I am glad you are going to a differnerent doctor. I do think kids can lie, don't get me wrong, but not about all that stuff. I don't see how she could dream it up by herself, she is too young for that. I hope this new neuro can look at her more effectively. Seizures do strange things. At this time my daughter did this we were at disney, and a large puppet was in front of her. It paralized her into some kind of grimace were she didn't snap out of it, froze into place so to speak. they did say it may have been triggered with the puppet, but that it was some kind of seizure. She was born with MBD and trembled at birth, and did the same thing as a three month old, kinda froze in her chair while she was next to me on the counter top. I was doing dishes. It did wind up that I went to that hospital I mentioned in St. Louis. She was in and out of that hospital for the first three years of her life. They never did put a finger on what was wrong with her. She did grow out of them, and was taken off phenobarbitol gradully. Her youth was in special education, but she did quite well all in all. I do wish you all the best with your child. Hope the appt. goes OK. ginnie

Rocker Mama

I'm so glad your going for a second opinion. Just hang in there. It is a good thing to do. It might be necessary to keep looking till you find one that
will work with you

What she is telling you isn't something a 6 year old can make up totally.
Some of it she might could have, but I tend to say no.

So just hang in there and keep us posted.

Donna

I also Agree about keeping a journal about the episodes. With a description of the symptoms, what she was doing before or during these episodes, and Any Questions You may have. I done that with my daughter. Every time i would get in to talk the Dr it seemed like I would forget all the questions I wanted to ask. So it helped and it also helps the Dr.s track any patterns there maybe. You know your child better than anyone else, if you feel that something is wrong Do Not Give Up Until You Get Answers. Good Luck. Hope All Is Well.

Rockermama, this perfectly describes my childhood experience. I know EXACTLY what your daughter is suffering from. I have a rare autoimmune disorder which I didn't have diagnosed for over 40 years!!!! The symptoms you describe are what I suffer from and there is not quick fix for this situation. Most regular docs won't understand what is wrong with your child. She may be having these episodes as part of a wider autoimmune syndrome. But it has been suggested to me that I suffer from a complex migraine associated with a wider syndrome. If you google complex migraine you will see what I mean. I am treated by a specialist in vasculitis in Cambridge UK. I wonder about any other symptoms your daughter may have. M