New and searching about possible nocturnal seizures in my child

[raggedyann]

Hi All,

I will just go ahead and spill it all. I have a daughter that has chromosomal disorder, well two. The both of them could give her seizures, and as well I have epilepsy that runs in my family. My grandfather and aunt had from what I can remember grand mal. I am learning of the different kinds of possible seizures and I feel that my daughter may have nocturnal seizures. I think she may have had other kinds as an infant also, but what I see now seems alot like nocturnals. We have not been to see a neuro yet (waiting for the office to call) but in the mean time I am looking to see if I am seeing what I think I see. I am going to post what I see in the nursery and hopefully someone can help me and get me familiar there.

Thank you all for your help in advance...

 

[Endless]

Hi, RaggedyAnn,

Welcome to CWE. This is a great place, and the people in here have tons of knowledge. When I was first diagnosed it was really hard, but they got me through it with support and information.

My heart goes out to you. It is so difficult to have a child who is ill. Here in the forum there are lots of parents whose children with seizure disorders. I know they will be helpful to you, too.

I'm glad your daughter has an appointment with a neurologist. It really takes a doctor to sort through what's happening and give a diagnosis. But we'll try to help you out any way we can.

Nocturnal seizures are very common. My doctor says that when the brain is transitioning between different types of sleep it's a prime time for seizures. At least half of mine happen at night. At least I think it's half. That's how many wake me up. Some people in here have only nocturnal seizures.

There are over 40 different kinds of seizures. Here's a link to a summary of their descriptions (most don't list all 40). Take a look at the descriptions and see if you recognize what your daughter is experiencing.
http://en.wikipedia.org/wiki/Epilepsy
http://www.epilepsy.com/epilepsy/types_seizures
http://www.epilepsyfoundation.org/about/types/types/

Those three links are to sources I use a lot: epilepsy.com, epilepsy foundation, and wikipedia

During the diagnosis phase the doctor will give your daughter lots of tests: MRI, CT scan, EEG, bloodwork, etc. More than one EEG and MRI may be involved.

Can I ask what you see when your daughter is having a seizure? I don't know how old she is - is she able to describe what she feels (or what she doesn't feel)?

 

[raggedyann]

Endless,

I am sorry, I forgot to mention that she is 8yrs old now. She doesn't really notice anything herself, the only reason I think that I know that she has them is because she is so tired and hard to wake up. I have been banging my head about what could make her so tired and for as long as she has been alive she is tired alot. She does have hypothroidism but that has been under control with meds since she was five. I noticed a change in the amount of time she was sleeping then, and she seemed to have adjusted from that.
Here is an example of what I experienced with her one night last week at about one in the morning: She woke me up and said that she felt as though she needed to throw up, she said her belly didn't hurt she just felt the need. She went to the bathroom but peed instead. She came back to bed and a few minutes later started with a little bit of jerly legs and then she seemed to be readjusting herself. Her arms did it too, it reminded me of what infants do where they throw there arms out for I guess a fear of falling? It wasn't extreme looking, but I did see that. Then I laid down opposite of her on the bed and felt her move again and it was like she was she was going to throw up but not the look on her face, just in her upper body, neck and shoulders. Then I heard this sound that reminded me of a dog growl and it sounded like it came from her chest while breathing. She didn't have rythmic breathing at that time either. All told this happened within a span of 15minutes. She did jerky moves a few more times the rest of the night. By the next morning she was so tired I couldn't get her to wake up and she was grinding her teeth, which she does that alot too. When I finally did get her to wake up she said to me, "where's my cot cot?" I had no idea what that meant, and later on in the day she said she dreamed she was asking me where her cupakes were......

She seems to have the jerky movements not long after she falls asleep, and I understand that it can sometimes be normal but when is it not normal anymore? It looks like she is squeezing her ab muscles when she does the move I described as throwing up. I see that when she goes to sleep. Grant it, I haven't caught her doing too much yet as I just figured this out last week and have been looking things up since.

I really appreciate your help here....

 

[raggedyann]

I don't know what made me look from here, but it struck me so I looked up autoimmune disorders and epilepsy. I am shocked, my daughter has psoriasis and right now her ped rehumy diagnosed her with juvenile idiopathic arthritis until she shows more signs of psoriatic arthritis. That would mean that she would now have four autoimmune disorders if she is found to have a form of epilepsy... am I right? Because she has hypothyroidism too if I didn't post it on this thread I know I did on another one here.

 

[Nakamova]

Hi raggedyann,

Stomach pain and nausea can be seizures or mild auras preceding other seizures. In addition, there is a seizure disorder called "abdominal epilepsy" --http://www.abdominalproblems.net/abdominal_epilepsy/abdominal_epilepsy.html

It's considered rare, although that may be due in part to the fact that stomach pains are sometimes disregarded in the search for seizure symptoms.

 

[raggedyann]

Nakamova

She has complained of stomach pains and headaches since she was a toddler and could talk and tell me what felt bad.
She did other kind of weird things as an infant that I have just thought back about over the weekend.

About two or three weeks after bringing her home I noticed that she would sway or something if she was laying with her head on our shoulder. She would bang against our head or neck and when she swayed it was hard and fast and you had to make sure you had a good hold of her in case she did this while were standing with her or you could definitely drop her. It didn't seem to hurt her and she never seemed startled by what she did.
Later as she got to be about one and a half to two months I noticed she did alot of hand-wringing. Her eyes would look really wide almost like she was seeing something she was afraid of but that is when the wringing would start and she would stop eventually. I never did mention it to the docs because she had so many other problems I just figured he would think I was crazy. She has always slept alot and I just chaulked it up to her being an easier baby than my first. She slept through the night before my 6 week leave was up. She slept late into the morning compared to my older daughter at the same age.
I feel really bad that seizures were never on my radar until now, and all the things that happen after a seizure fits her.

 

[Nakamova]

Don't feel bad about not suspecting seizures sooner -- they can be so subtle, and can show up in all sorts of different ways other than the conventional convulsions/loss of consciousness. Until I discovered this site, I had no idea that there could be so many different kinds of seizure disorders (over 40 and counting). I think it's great that you are being proactive about asking questions and getting informed. I hope you get to see a pediatric neurologist as soon as possible to get some answers.

 

[raggedyann]

Nakamova,

You are definitely right about all the different kinds of seizures. I am a little scared about the nocturnal ones now that I have read some of the posts in the Nursery. I am not trying to freak myself out, I just want to know what I am up against. I do wonder what parents do for their kids if they have these nocturnal ones and school the next day. She sleeps with me when my husband is out of town or I would never have heard her make the sounds she made the other night and watched her stomach roll like it did.

Another question, someone mentioned auras and that her saying she had to throw up was an aura..... what kinds of auras can there be? I know you all would be more knowledgeable than me trying to look it up on the internet.

 

[Nakamova]

Auras can be just about anything involving sensory input. They can happen as warnings to addl. seizures, or just happen on their own. Sometimes they happen in combination. It's believed that the type of aura is related to the area of the brain where the abnormal brainwaves originate. Below's a partial list:

Sensory/Thought:
Deja vu
Jamais vu
Smell*
Sound
Taste
Visual loss or blurring
Racing thoughts
Stomach feelings
Strange feelings
Tingling feeling

Emotional:
Fear/Panic
Pleasant feeling

Physical:
Dizziness
Headache
Lightheadedness
Nausea
Numbness

And there's more info here as well: http://www.coping-with-epilepsy.com/forums/f27/experience-aura-auras-2485/