Connection with seizures on eyes dilating?

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Oh I hate it when they treat moms like that! We our kids and what is 'normal' for them more than anyone~ Ugh...
 
With regard to 3 out of 5 children having seizures:

Some seizure disorders have a genetic component, so some types of epilepsy run in families. One example is Glut-1 Deficiency, which involves a mutation of the SLC2A1 gene. This disorder can either be inherited, or can be a new mutation.

One early symptom of G1D is absence seizures before age 4. However, even absence seizures that are NOT G-1D can be genetically linked.

This article from Emory's genetic dept. says that there are over 140 distinct genetic syndromes in which seizures occur, and that a sibling (of a child with epilepsy) under the age of 10 has a 6% chance of also having epilepsy
http://genetics.emory.edu/docs/Emory_Human_Genetics_Seizure_Disorders.pdf
 
Do you know anything about the MTHFR gene? I found out recently I have inherited both mutated genes from my parents. Interestingly enough, it is the #1 top gene out of 16 found in those tested with Autism.

I wondered if their was a connection...but, the Dr. just dismissed it and said it was a completely seperate issue...

But, logically speaking, this gene makes it so my body can't process folate...which means...high levels of something else (forget the name of it) happen in my blood and can cause major issues like blood clotting, fiber myalgia, etc...

So...if this gene causes blood clotting...couldn't blood clots create seizures if found in the brain?

Luckily, my son's MRI came back normal...but, the chance of getting blood clots if extremely high for me. I'm pretty sure my children got this mutation as well.
 
MTHFR is a new one for me...but...if your body can't process folate...I do know that folate deficiency in pregnancy can cause neural tube defects (that's why the doc always gets expecting Moms started on those maternity vitamins -- only problem is...by time she figures out she's pregnant, and then gets an appointment with the OB/GYN...maybe baby is already 2 or 3 months gestation...and neural tubes start developing in first month of gestation).

But...I would think the MRI would pick up any defects
 
Yes, I would think so too...but, with my son having the seizure throughout...could they get a good reading? Soooo many questions over here! LOL...I knew I should have become a Dr.! LOL
 
What kind of seizure was he having during the MRI mzollinger? They would be able to tell you if they got good images or not. If it was a large seizure like a tonic clonic i would think it would have been impossible to do the MRI while he was seizing but they would have told you that they couldn't get images.
 
They never told me what kind...but, I think it was going on throughout...he was completely OUT...they did not have to be sedated...he was completely out on his own...but, his legs were shaking from time to time and about 20 minutes into it, he sat completely up and lifted his legs up...eyes dilated and looking straight and was completely stiff...he didn't go into convulsing...but, right after that, was 'out' again, but legs continued to twitch and shake.
 
Oh...and fyi...I DID take one of my daughter's in today that is having symptoms of eye dilation, migraines, and dizziness. The Dr. told me, 'It could be many things, or it can be one thing. But, an absence (sp?) would explain ALL her symptoms. An MRI and EEG has been ordered for next week on her. Likely they will do the same with my youngest daughter.

I'm overwhelmed and tired...seriously? What are the odds that 3 of my 5 children would have seizure disorders? But, the Dr. thinks it's a likely possibility.

It's also a possibility that her migraines could cause her eyes to dilate.

We will see what happens. But, I'm definitely getting the idea that eye dilation could directly connect to seizure activity after my visit to the Dr. today.
 
Oh, bless your heart -- cyber hugs!!

But good on you for following up on this...always trust your Mommy gut!
 
Thanks for that! I have to do my first sleep deprived EEG...wish me luck! With my son they ordered a routine one for some odd reason.
 
My right pupil dilates after seizures, I have even had strangers point it out with just a quick glance and they hadn't even witnessed the seizure so the difference is pretty substantial. According to my research and my Neurologist it is typical so I would definitely have your little one checked out. Even if not Epilepsy it can be a sign of Neurological issues. I wish you and your family the best.
 
My children are having both eyes dilate. I know the 1 eye is typical for epilepsy...but, I'm not sure about both. :(
 
Chmmr I read your post and it felt like you had almost written my experiences. I was even told but his GP it wasn't anything I was just exhausted having 3 kids so close in age (I had 3 kids in 3 1/2 yrs). I remember going home and feeling like a total failure of a mother at first thinking it was all me but then he kept having small clusters of seizures. When he had one in front of another GP i burst into tears she comforted me saying it will be OK and I said no I am happy that now someone believes me.
When he was first admitted to the hospital due to his seziures after a few days I was told he just had Shudder Syndrome it was minor he would outgrow it, yet when I questioned the absence events and drop seziures I was basically told I was over reacting.
I am just so lucky I have since found the most brilliant paed nureologist and my sons paed, although a little reluctant at first to acknowledge the extent of his condition, has seen so much footage and had first hand experience of his event's that she is now searching for answers and everytime we see her she tells us about her latest discussions with specialists re him and where to look at next.
I find it hard when we get told by his specialists that they know something is wrong and are worried they are missing something but his team of specialists I feel have been working hard to work out what is going on.
The first GP well he has since appologised and I think learn't a lesson to listen more to a mums concerns in future.
Re the trying not to overanalyze yes I try not to but at times I have been told I should have reacted earlier or taken him into hospital earlier as sometimes I wait to long.......
The one thing i am learning through his journey is to be more confident in my decisions regarding his condition and if I find something doesn't feel right to seek out assistance as I would rather be told I was over reacting than to have them miss something important which may help them work out what is going on with him.
 
I'm learning to have more confidence in myself and my intuition as a mother as well! It's hard when you are treated by society like you're stupid because you're the 'mom' and what do you know? But, I've been having to get to the point where I don't care what others think so I can be the best advocate for my children that I can. They are more important. And, if everyone thinks I'm crazy, that's ok. The important thing to me is getting my kids the help that they need. :)
 
Donnajane, glad to hear that your docs are working hard to find some answers for your little one, and that the one GP actually apologized -- wow!!

As I said before, we Moms need to trust our Mommy gut when something is wrong with our child, and research as much as we can (I used to leave it to the doctors to find all the answers, but not any more), and not be afraid to propose some theories to the docs.

We went through a dreadful crisis last Fall, and (thanks to this site) I began doing a lot of research, and bouncing things off of others, and a lot of the fine people here brought some good research to my attention, as well as their personal experiences.

I brought several (well researched) theories to the docs -- two theories were right (connection with GI issues, and less meds better) and one theory wrong (he didn't have a brain tumor), but our Neurologist did listen and worked with us in testing and experimenting with meds. We had one nutritionist (we use the Ketogenic diet) who kind of smirked at me (and, worse yet, said there was nothing more that could be done for Jon from a nutritional standpoint), so we went and found a new Pediatrician who specialized in nutrition, and she's the one who got Jon's GI issues cleared up, which eventually led to seizure control again (long story).
 
That is sooo awesome you were able to get things under control and that you listened to your 'gut'. It's hard to do that I think...knowing people will think us to be crazy and in my case not wanting to 'offend'. But, we need to be those adovocates for our children, even if it may not be the popular or 'appreciated' thing to do.
 
Eyes Dilated 4 Days!

My 20 year old daughter had a seizure in March after being 1 year seizure free. She has JME and will usually have a Grand Mal seizure.

This seizure was very different; she never lost consciousness and watched as her body shook uncontrollably. Her eyes stayed dilated for 4 days.

I took her to our family doctor, her neurologist, and an eye doctor. The family doctor was the most helpful; he said her brain was not recovering as quickly from the seizure and put her on bed rest for a week with NO stimulation. Her neurologist indicated he suspected she was on drugs.

My daughter is a college student (junior) with a full load, writes for the college newspaper, works all of the college home sporting events as a liaison, is a member of the college dance repertory ensemble, is very active in her sorority, and was in the middle of nightly rehearsal for her college production of Guys and Dolls when the seizure occurred.

NO my daughter does not take drugs; she is stressed (probably what triggered the seizure)!

She has since cut her activities and school and seems to be doing great.

We still have no answers as to why her eyes were dilated for so long. Any information we could get from this site would be greatly appreciated.

Thanks for reading,
Bonnie
 
I'm sorry to hear about your daughter. That has to be so frustrating. I have no doubts she's a wonderful person and great student. That must be so frustrsting to be treated that way.

I don't know if this will help. My son was recently at the hospital where they did a vEEG and determined the partial epilepsy they diagnosed him with recently was incorrect. They saw so much activity in both sides of the brain that he now has the primary General epilepsy diagnosis. As we were talking with the dr. he mentioned as my son gets older, we need to avoid alcohol with him because it is a huge trigger as well as sleep deprivation. Is it possible while in college that she might drink with friends occassionally?

My daughter gets dilated eyes all the time due to migraines. Sometimes migraines can last days. Your daughter could possibly have a migraine due to the seizure? I don't know. I'm just tossing ideas out there. I'm new to this myself.
 
She complains about headaches from time to time and we know it is probably associated with the epilepsy. We have talked to her extensively about alcohol because it is one of her triggers just as stress and fatigue. She has drank on occasion with friends but it was right after she turned 18 and she was wanting to see what the club scene was all about. She cannot stand not being able to drive so she really tries to do everything right; take her seizure meds, etc. I feel this seizure was brought on by stress and fatigue but I am dumbfounded by the eyes being dilated for so long. We only have 3 neurologists in our area. They are slowing becoming hospitalists and do not see patients so we are at our wits end trying to find answers.
 
I know my child is 9 and not an adult like yours. Luckily we don't have to worry about alcohol use right now. I'm sure we will need to talk to him about it too as he gets older. But, it does sound like she's under lots of stress... and the combination of everything could have just been too much. To me the eyes dilating sounds like a migraine. I would take her in if you can get into someone. I have to drive almost 4 hours for us to see a nuerologist. I feel your pain.

Have you had an mri recently?
 
You must log in or register to reply here.
Back
Top Bottom