A Momma in need

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hankandcarolyn

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I'm very sorry that my first post hear is a question, but I was hoping to get some help. My son has Hunter Syndrome and seizures are one of the many nasty side effect of the disorder. He has been having seizures for over a year. On an EEG they see "Pre-seizure activity coming from the left/front of the brain" but the seizures themself have always presented as staring/absence seizures. But now I think they are changing, and this is where I need help. Danny is not verbal enough to tell me when he is having/has had a seizure, so I need advice from someone who can tell me there experiences. What we are seeing now that I firmly believe are seizure go somewhat like this:

Sometimes it will start with what I think is his auras. He will rub his eyes and act somewhat tired, or sometimes grumpy. He usually gets a checked-out look on his face and he gets very quiet, which for him NEVER HAPPENS!! He stops all speech, all noises, all sounds. If he is up and moving around, he will stop playing and just kind of stare around. Sometimes he will look at you if you talk to him but that is all the response you can get. They usually happen in the mornings, and if he is sitting (working with his teacher or something) he will usually continue working on his task like nothing is wrong!! His teacher discribed it to me so I came in and observed to see it for myself. I saw one last for close to 2 minutes. You can tell as soon as he "checks back in" because he starts talking again. His teacher and I really believe these are seizures, but I would really like to know if any of you have seizures like this. Our neuro is supposed to call us back by Friday to decide if we want to try another 24hr video EEG and see if we can catch one. Thanks for any help you can be!!
 
Hi Carolyn (or Hank, not sure who I am speaking to) Welcome to CWE.
I am glad that you stopped by. We do allow questions in the first post....no rules.
Well... Bernard has a few, but not many.

I am a mom of a 16 yr old that has been having Tonic Clonic seizures. They run the range of 0-6 a month. She has had a few odd ball episodes, but not enough for me to comment on any other type of seizures. There are many here that have had some interesting occurances. What you describe, sure sound like seizures to me. The before and after both sound like absence seizures. I am not fully understanding the differences or how they have changed.

We tried a 24 hr VEEG but they did not capture a seizure. There are many reasons for this I have learned.

Hang tight, someone will be along to offer more suggestions. Hope your neuro is helpful on Friday.
 
I have had absence seizures ever since I was about 12 or so. I dont experience auras, what I do Im told is if Im talking or doing something I just stare off into space and then I just come back and I have to be reminded what I was saying. For me having an absence seizure is almost just like losing my train of thought and losing some time. What you are describing is similar to what I go through, except for I have never been told that I have continued what I was doing. Seizures can change though. A couple of years ago I started getting tonic clonic seizures like Robin's daughter. So now I have 2 kinds. Let us know what happens. Wish you the best.
 
:hello: H&C!

So sorry your son is experiencing all
of this! I'm sure you are both at your
wit's ends!

((((((( HUGS )))))))))

Let's hope the EEG or vEEG will catch
it all and get to the bottom line of it!

PS: I moved your post over here so that
everyone may welcome you to CWE and
people may be able to answer you!

:)
 
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It sounds like complex partials to me also I have them but not often.. for me they happen fast... usually i have a aura first... but not all the time...

btw welcome to the forum!
 
Welcome Hank and Carolyn

First, welcome to what I hope you will find as a great home away from home. I am fairly new here and I enjoy it.

You didn't mention if your little one was on any meds for the Hunters. I am not as well versed as some of the others here, but sometimes the meds can cause symptoms like these if they reach too high of levels. Please be sure that your MDs are keeping an eye on the meds.

I personally can get symptoms similar to these when I have had too much meds. Sometimes theraputic levels can be hard to maintain due too all sorts of factors.

BEST WISHES :e:
 
Welcome! You're lucky your child's teacher caught the seizure. With absence seizures, most teachers don't.
 
Thanks for your warm welcome and responces! This is the "Carolyn" half of hankandcarolyn.

RobinN said:
I am not fully understanding the differences or how they have changed.
Click to expand...

The big change has been his behavior during the seizures. Before, he would just sit and stare. Now there are times when he will continue on like nothing is happening while he is having a seizure. The only thing that tips you off that something is wrong is the lack of sounds and he gives little to no responce when you talk to him. Say he is doing a puzzle, when the seizure starts he will continue doing the puzzle like nothing is wrong. Take the puzzle away and he will go back to sitting and staring, where as when he is not seizing he would protest to his puzzle being taken. The other change is the frequency. He has between 8-15 a day nearly every day now.
 
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