I originally posted in children's health, but was told I should post here. I will copy and paste my two original messages.

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?"

"I was correct, the neurologist we were seeing told my husband that my daughter was lying and should see a therapist since it was behavioral. None of her "episodes" showed on her eeg. But it isn't her personality to lie. At all. She is so happy, and sooooo sweet.

We have an appt next month with a psychologist, and next week with a new neurologist from a totally different practice.

The latest "issue".... She told me today she sees "bad pictures", not when she is sleeping. She couldn't give me an example other than bad, like monsters. Not anyone getting hurt or anything. She said they are ALWAYS bad.

She is completely aware they aren't real. Just random flashing bad images.

Her behavior is REALLY good. She has never hit, doesn't tease people, has fantastic manners. She is silly, and a bit flaky, but no aggression. She rarely is sad, and when she is, it lasts like 2 minutes, then she is back to her happy self. She is logical with dealing with things. Mature in some ways, and a goofy goober in other ways. I am so worried it is a mental issue."

Since posting these messages, things have been fine. It isn't a continuous thing every single day. She has been home from school on break. Her little brother has been doing typical two year old things, bugging her and being a brother, haha. She has responded appropriately. Frustrated, but no aggression or real anger. It honestly makes me think it is so unlikely it is any of the serious mental health issues that would cause hallucinations. You would expect more behavior issues, I would think at least.

The only issue she has been telling me about is seeing white "sparkles". She hasn't complained of a headache in a very long time, though that isn't to say she isn't having migraines without the pain. But with all her symptoms I just want to be sure.

We see a new neurologist tomorrow. I am anxious to see how it will go.

Hi RockerMama,

Welcome to the forum! I've had epilepsy for 40 yrs. and what your daughter is describing when she sees colors, odd pictures, and odd odours sounds like a simple partial seizure also known as an aura seizure. This type of seizure can sometimes lead into a complex partial seizure or absence seizure.

Before I started having seizures I started having migraine headaches when I was 10 yrs. old (49 now). The migraines lead into seizures. My advice to you is to get your daughter to see an Epileptologist (Dr. specializing in epilepsy) and be sure you go to an Epilepsy Center which are often found at University hospitals or big hospitals. I got the most help there and the Dr. was able to help me better than any neurologist I've ever seen over the yrs.

Often seizure activity will not show up on an e.e.g. or MRI and that's because the brain damage is in to deep in the brain so it won't show any problems.

The thing to do right now to help your daughter until she sees another Dr. is to cut her back on carbs and starch foods. Keep her away from nutra sweet or any other fake sugars and start giving her food high in fat. This will build up keytones in her body and help stop the possible seizures. She will burn the fat off for energy. This diet is known as the Ketogenic Diet and it's for people who have epilepsy. It works really good with kids.

Another thing you should do is get a calendar and write down any time she tells you she might have had a seizure. Write down what time it happened with a discription of the possible seizure. By doing this it will possibly show a pattern in her seizures and this can be very helpful the her Dr.

I found taking vitamin B12 once a day was a great help reducing my seizures. I also found that sometimes I will have a seizure when there's a low pressure in the weather.

I wish you and your family the best of luck and May God Bless All of You!

Sue

We had the appt with the new neurologist today, and it went soooo well. He is putting her on medicine for 10 days to see if we notice an improvement.

Hi,
I'm glad to hear that the apointment went well with the neuro. If for some reason the seizure med (AED) doesn't work you can ask the Dr. to do a DNA test on your daughter and by doing this they can find out what AED's (seizure meds) will work the best for her with the least side effects.

Also take note that if bright colors or certain sounds can trigger seizures for your daughter. I found out that I was photosensitive which means certain colors triggered seizures for me. Some people also have problems with certain sounds and they will trigger seizure also.

I just resently found out that cell phones trigger seizures for me also. If a person is using a cell phone near me or even texting it will trigger seizures for me. This happens do to the frequency of the cell phones. I've learned to use a ham radio instead it's much safer and I can make phone calls long distance or local for free. Here's wishing you and your family only the best and May God Bless You!

Sue

RockerMama,

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a caring fellow members here, welcome to a supportive and relaxing place. Our shoulders are here for support in many ways.

Looks as though Sue has given you a great number of things to look out for. I will agree on getting her into an Epileptologist, which you will fine in medical schools.

Our shoulders are here for support in many ways. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene