Confused about sensory issues

[RockerMama]

I hope it is ok if I post here, I am not sure what else to do. This is going to probably be long, so sorry in advance!

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.

Which brings us to this week, lol. When my daughter woke up on 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 Dr, 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.

Today 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.

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

1)6 years old with APD
2)Headaches(less frequent now, but still a few times a month at least)
3)Sees white flashing light in peripheral
4)Sees "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)Smells bad smells when there is nothing
7)No tremors, no zoning out, no stiffening
Heard whistling when there was none

Does it sound like it could be seizures? Her pediatrician's office called the neurologist on Friday and are waiting to hear back from them to get her in earlier than May.

TIA!

[travel bug]

Hi RockerMama,

Sorry you and your daughter have been having such a difficult time lately. I'm sure others with more knowledge than I will come along with some helpful advice, but in the mean time, read through the link and see if anything rings a bell. It's about parietal lobe epilepsy which is very rare. Some of the possible symptoms sound similar to some of the things you mentioned.

http://epilepsy.med.nyu.edu/epilepsy...-lobe-epilepsy

Good luck and take care!

[AnnaM]

I hope it is ok if I post here, I am not sure what else to do. This is going to probably be long, so sorry in advance!

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.

Which brings us to this week, lol. When my daughter woke up on 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 Dr, 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.

Today 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.

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

1)6 years old with APD
2)Headaches(less frequent now, but still a few times a month at least)
3)Sees white flashing light in peripheral
4)Sees "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)Smells bad smells when there is nothing
7)No tremors, no zoning out, no stiffening
Heard whistling when there was none

Does it sound like it could be seizures? Her pediatrician's office called the neurologist on Friday and are waiting to hear back from them to get her in earlier than May.

TIA!

My son (he just turned 4yrs old a week ago) has said on more than one occasion that he has seen lights move, heard sounds similar to your daughter, tho they change. I've heard nothing most of the time tho. And smells - bad.

Tonite he said he saw a shape on the pillow. He said it was white and going 'bip bip bip' ... (making movement gestures) ..He than said it was gone. He also said he heard sounds. He would make noises similar to engines, squeeking like a mouse..etc. He said that there was a urine smell in his bed, yet I took a sniff....nothing.

Anyways, my son has tonic clonic absence frontal seizures. But now I have to wonder if another type might be going on???!! What he is experiencing still could be his meds tho (introduced another a week ago - Keppra) ..side effect. He mentioned the above when he started topamax to. neurologist felt these were hallucinations due to the drug. Could be the same again, with Keppra, but now I am wondering.

My son ONLY complaines of these 'hallucinations' when going to sleep, or waking up. Ring a bell for you??

[Endless]

Hi, Rockermama and AnnaM,

Welcome to the forum!

Rockermamma, I'm so glad your daughter will be seeing a neurologist. What she is experiencing could be simple partial seizures, probably in the temporal lobe, a migraine, a side effect of her meds, or a sleep disorder. Let's take them one at a time.

Temporal lobe siezures

See travel bug's excellent link. Some people get a headache after seizures - "postictal headaches."

Migraine

Migraine "auras" can look a lot like temporal lobe siezures. You can get the aura without the headache, get the headache without the aura, or get them both together. A typical aura is colored or white shapes that move, or flashes of light. I get those. There are dozens of types of auras. Here are a couple of links:

http://migraine.com/migraine-symptoms/aura/

http://en.wikipedia.org/wiki/Aura_(symptom)

Sleep Disorders

There are over 50 types of sleep disorders, according to their international classification.
http://www.esst.org/adds/ICSD.pdf (really boring list)

An example is hynogogic hallucinations, where people see or hear things that aren't there, either when they are asleep, falling asleep, or upon wakening.
http://www.sleepdisordersguide.com/t...cinations.html
There are more types on the left hand side of the web page.

Drug adverse reactions

Whenever the doctor prescribes a drug, I ALWAYS look up the package insert. The doctor and the pharmacist don't tell you everything. You may find your child's symptoms in the adverse reaction list.

When you read the "adverse reactions" part of the package insert, typically first there will be a description, then later tables that show the percentage of people that get each reaction. When you look at the tables, look at the difference between how often people in the control group get it, and how many in the drug group get it. For example, if it says that:

5% in the drug group
1% in the control group

That means that actually 4% of people get that side effect more than just the average person not on any drugs. That's the number you want to pay attention to.

Anyway, here's a link to the NIH's dailymed site. Search on your child's drugs.

http://dailymed.nlm.nih.gov/dailymed/about.cfm

Gosh, I hope things get better for both your children. The anti-seizure meds are really powerful - they do things to our brains. I can only imagine what it is like for a child.

[RockerMama]

Thank you so much for the responses. I looked over those links. I really think it is either migraine or seizures.

The neurologist's office called me today, and are going to see her on Thursday instead of in May, so that is good news. She goes for a sleep deprived eeg on Thursday morning, then the neurologist that afternoon. So hopefully we will find out what is going on.

She saw white light again last night, twice. This time in the shape of a sideways crown she said. She had a headache, and then saw the first crown, and her headache went away. Then she saw the second one a little while later.

[travel bug]

I'm so glad to read that your daughter will be able to see a neurologist Thursday and not have to wait until May.

Please let us know how it goes and what you find out.

Take care!