Mom of a 4 year old who just started having seizures

[mlbandura]

Hi. I am new here as is my sons seizures. He is handsome wonderful boy, 4 years old. Last Friday, March 26th, he awoke after about 2 hours of sleep. I went into his room and he was laying on the bed he had his hands clenched up in a fist and next to his jaw. His eyes were open. He was not speaking just moaning and grunting like he was in pain. This lasted maybe 30 seconds. I picked him up and carried him into the living room. He was really out of it and confused. I asked him what was wrong and all he did was tug at his shirt. We took him to the ER. On the way there he seemed a bit better and said his mouth hurt. By the time we were seen by the ER doctor, about an hour after we got there, he was fine. I told the doctor what happened and he could not explain it so he discharged him with abdominal pain. While we were waiting for the discharge papers my son looked at me, kind of chuckled, and asked why he was in his pajamas? That concerned me, so figuring the ER doc was a nut I took him to his pediatrician on Monday to see if she could figure out what was wrong. To be honest I was not even think a seizure. I have no experience with them so I don't know how it plays out. I explained to her what happened and she felt it best to be referred to a neurologist. He was diagnosed with Waardenburg syndrome (a genetic disorder) when he was 6 months old. Plus he has a larger head circumfrence than other kids his age. He did have another episode this past wednesday night where he was asleep and woke up after a couple hours. I walked in and he was sitting up seemed alert. I called his name and asked him what was wrong. He told me he could not see me and he was dizzy. I took him in the living room. His eyes were very dialated and his right arm was numb. I again started to take him to the er on the way there he vomited. So i pulled over and called for an ambulance. He was very sluggish the whole way there and for about another hour at the hospital. He started to return to his fun loving self. The doctor believes he was having an absentee seizure. He had two small staring spells while in the er. Then the next day he had another staring spell. But before each staring spell I noticed his fingers one his right hand go into a claw shape and move a little then they stiffen. He threw up after the last one. He hasnt had anymore since them. We have an appointment on the 12 of may to see a neurologist. Is this a normal wait time or am I just a panicked concerned mom who thinks he should be seen sooner. I am very scared for my son and I have alot of questions and fears.

 

[Endless]

Hi, Mlbandura,

I'm so sorry to hear your son is sick. It sounds like his seizure was so scary. Taking him to the ER was the right thing to do. I'm curious, though. He went temporarily blind, and the ER said it was an absence seizure? That fits for his staring spells, but not all the other stuff.

About the waiting time to see a neurologist - it depends on where you live, and which neurologist. Are you in the U.S., Canada, or another country?

In the U.S. the first-visit new patient wait for a well-known or popular local neurologist can be a couple of months or more. I waited over 2 months to see mine. The neurologist will cut that down for cases where a person's doctor calls and gets the patient reprioritized.

If you feel your son needs to be seen sooner, try having his primary care physician call the neurologist's office and see if your son can be moved to the front of the line. Tell the neurologist the symptoms, not the ER diagnosis. They may consider absence siezures not a big priority, but dialated eyes, loss of eyesight, vomiting, a numb right arm they may consider a high priority.

I don't know what your insurance covers, but another option is to keep your appointment with the neurologist you have chosen, but also call around and see if you can find one that you can get into sooner. Then see one first, and the other for a second opinion or as your main doc. The quicker doc would be as an interim measure until you get in to see the one you want. Some brand new practices or brand new doctors can get you in pretty quick.

I'm going to keep my fingers crossed for your son and you. Please let us know how it turns out.

 

[Nakamova]

I agree with Endless --

Keep trying to get a referral for an appointment earlier than May 12th. Your son may be fine over the next month of waiting -- absence seizures can be relatively mild -- but since this is new behavior for him it 's a good idea to get some answers sooner rather than later. It certainly can't hurt to push for an earlier appointment. And if your son displays any more disturbing symptoms, don't hesitate to contact your pediatrician and/or go to the ER -- sometimes you can actually get seen by a neurologist there, and get into the hospital system faster.

Keep taking notes on what symptoms your son is experiencing -- how often, how long, exactly what happens -- the more detailed the better. This will help both you and the neurologist in making a diagnosis and coming up with a treatment plan.

I wish both of you the best of luck in dealing with this. There's a lot of support here at CWE, so don't hesitate to ask questions or vent.

Best,
Nakamova

 

[mlbandura]

Thanks for your advice. We are from Maryland. I have called his pediatrician who is going to call the neurologist on Monday to try to move things along. He sees a geneticist at Hopkins once a year and we tried to get him in with a neurologist there but that fell through. The one we are trying to get him in with now works out of Childrens Nsational Medical Center in D.C.. I have already decided if he has another one of any kind we will go straight to the ER and demand he been seen by the neurologist there. I am really glad I found this website it has already calmed my nerves a lot. It is kinda comforting to know that I am not alone here. So, Thank you again.

 

[Meetz1064]

Hi, hello

and how do you do?

I'm sorry you're going through this with your son. It's particularly hard to watch as a parent, I'm sure. I'm NOT the parent of an E child--I have E myself. However, you WILL find yourself plenty of support here. There are a number of other parents here in CWE. Go check out the nursery....I'm sure you'll find a lot of information in there.

Also there is a moderator, Dutchmom, who is the mother of a son with Lennox-Gastaut Syndrome...and she's a moderator of another forum for parents of children with E. Perhaps you can send her a private message, and she can also give you some guidance as well.

Take care.

Meetz
:rock:

 

[Endless]

I am really glad I found this website it has already calmed my nerves a lot. It is kinda comforting to know that I am not alone here.

I agree! I'm glad I found it! I'm glad you did, too!

 

[stilldancing_98]

Hello ML!
My name is Teresa. I have epilepsy and so does my 12 year old. My son also was in the 90th percentile when they measured his head. It kind of freaked me out at time. I remember how scary it was when different issues came up. I am so glad you have the doctors that you have. And you are so motivated.

 

[RobinN]

Welcome mlbandura -
Waiting was the hardest part of the process for me too. I remember at one point they thought my daughter was having mini strokes and the wait for Children's L.A. was three months. I flipped out!

I am down the road a bit from there and much more relaxed with the situation. Learning as much as I can has helped me to deal with whatever comes our way. Life sure throws some punches. I am glad you found us. I hope we can be the comfort and support you need during those trying times, and then some.

Good luck with the appointment.

 

[Blondie47]

:e:Hi There,

Sorry to read that your son is having episodes that are undiagnosed yet.

I am a mom of a child with E and went through the whole ER thing before she was diagnosed. We started with the neurologist on call at the hospital. Now we see a neurologist at an epilepsy center about an hour away from our home.

My DD can go blind during a seizure localized in the occipital lobe. She is conscience, but can not see me or may see blurred outlines.

Keep pushing forward ! Also, you may want to start a journal and log everything down. It will make you a very strong advocate. Your neurologist will appreciate the details. I was doing it on excel, but have since changed to a simple binder, with dividers by month. Documenting the time, length and discription of episodes helped me put it all together in the beginning. I brought it to all appointments.

Take care:e:

 

[Dutch mom]

Welcome to another mom!

My 10-year old son started to have seizures at age 1,5. At age 3 he was diagnosed with the Lennox Gastaut syndrome. Not a 'good' diagnosis but it made a lot of things clear and helped us to cope with it. The uncertainty was much worse. My son is a special needs kid with braindamage. His E. turned out to be med resistant and we finally turned to the ketogenic diet which helps to control most of his seizures for allmost 6 years now.

I do hope you'll get an earlier appointment and more clearity about what's wrong with your kid. Keep us updated here and take care!

 

[KellyD]

Hello! My 2 year old son and myself both have epilepsy. My boy was diagnosed at 8 months so I know exactly what you are going through and how scared you are and this website was really the one thing that helped me get through the worst part of things. You have come to the right place! Best of luck for your son, I hope you see a dr soon and get some answers quickly.

 

[mlbandura]

Thank you all for your advice and well wishes. Also, for your stories. They do comfort me in a big way. Over the weekend he has had more of the staring spells through out the day and every night he has woken up, sat straight up stared of into space blinking a few time then layed back down. I talked to his teacher this morning (which is also his aunt) and she is going to keep a log at school for me. Plus I know she will watch him more carefully but without making him feel like he is getting special attention. I called his pediatrician this morning and told her what has been happening over the weekend. She is going to call the neurologist and try to get things moving alot quicker. Thankfully I know she will fight for my son and do everything she can to get things moving. So again thank you for all the comfort.

 

[Rae1889]

there are several forms of Waardenburg syndrome. do you know which one he has. type 4 is known to have neurological manifestations.

 

[mlbandura]

he has Type 1 without the deafness.

 

[mlbandura]

good news update!!! My sons pediatrician called the neurologist today. We go tomorrow morning to the hospital for an overnight stay so he can do a 24 hour video EEG. Hopefully we will have some answers soon. I am relieved that we arre going but yet I am scared at the same time, not knowing what to expect.

 

[Endless]

Hooray! That IS good news! 24 hours will be more doable for a 4-year-old than 3-5 days, too. They won't let him move out of bed except to go to the bathroom, which is hard for any age.

Take along oil of some sort - baby oil, olive oil, mayonnaise, whatever. You need it to get the glue off his head afterwards. Or, you can wait until you get home and give him a bath. It takes lots of oil and lots of patience to get all that stuff out.

Games, coloring books, etc., too.

 

[RobinN]

Nothing to be scared about. I am sure your hospital will answer any questions and make you comfortable. You just might not get any sleep.

 

[mlbandura]

The hospital stay went well. He did a great job and was such a big boy! The neurologist said his EEG didn't pick up much. The video showed him having some "right arm posturing" at night (don't know what that means). So with what he saw on the EEG and video and with the detailed accounts I gave him (and his genetic back ground) He said he is having complex partial seizures. He started him on medication. We go back to the Neurologist in a few weeks and will go from there. Thank you also for tips on bringing oil (hair), books and toys, that worked well. He also loved the fact that he got to eat in bed..lol