Bad News: Multiple seizures per minute.....figures!

Discussion in 'General Parenting' started by paperplate, Feb 16, 2013.

  1. paperplate

    paperplate New Member

    So, after DS13 exploded the other day, I got him into neuro yesterday morning. Turns out his EEG from last week was awful. Why didn't they tell me then? Why did I have to wait for neuro to sit down with me???? Anyway, he's having multiple seizures every few seconds. I didn't notice them, just him screaming at me and telling me 'DON't TOUCH ME!!!' .....ugh. (I had my hands on his chest cuz he kept trying to make a break for it and my other 2 kids were in the family room.) I should have seen it, but didn't. I only seem to notice the small jerks or the tonic clonics. Meanwhile, he's been eating everything in site and gained 20 lbs in 4 weeks!!!! OMG! Neuro is concerned. It would seem the seizures are triggering an Obsessive Compulsive Disorder (OCD) response, even with FOOD! I mean he SWALLOWED A POUND OF ROAST BEEF! Then the turkey, then the ham, perogies, hamburger, potatoes, pizza, cheese block a matter of MINUTES! Totally nuts!!! So, we're upping the carbatrol. Who knows whether or not it will work. School is a problem. They say they 'understand', but since THEY don't see the seizures, they have a hard time understanding why he's forgetting stuff. DS13 doesn't even remember 3 years of his life. He doesn't remember those birthdays either. How is going to remember 7th grade???? I often wonder if that's why he acts like he's 9 yrs old. I think what if he has lost so much time, he just hasn't had the chance to catch up with the other kids? It's really hard knowing that there have been some great times in there too and he won't remember them. Anyway, just thought I'd let you all know, I guess it WAS the Epilepsy triggering that insanity the other day. I just wish it would go away and let him lead a normal life.
  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I don't want to alarm you, but has your son had an MRI of the brain to make sure there is nothing physiological causing the seizures? If not, in my opinion it would be a good idea to make sure he gets one done. Seizures can be epilepsy, but sometimes they are triggered by other things in the brain. This reminds me a bit of my mother...I think it would be a very good idea to have a picture of the inside of his brain, just to make sure...Know what I mean?? You want to rule out things like tumors....gentle hugs.

    I'm so sorry you are going through this.
  3. buddy

    buddy New Member

    I'm so sorry. It's so hard. I've had staff outright dispute the seizures. Really! So you know more than the specialists with an eeg?

    Just go with...

    Until his eeg is showing controlled seizures, any behavior IS that. He's not there that much, they need to keep everyone safe then move on.

    Q doesn't lose memory, he's aware the whole time so thinks he really is mad about whatever is going on, even if fun. And he says what he's mad about so they believe him. I've tried explaining that he couldn't possibly know, he's just trying to make sense of it so STOP ASKING!

    Sure hope the increase helps and the side effects are not too much.
  4. buddy

    buddy New Member

    Also, some medications lower the seizure threshold so if control of the seizures helps the behaviors he maybe can go down on stims. ( I think you said he takes a stimulant right) that cut our aggression down hugely.....but the seizure medication being right is so important. He's how old? Q got obsessive about food from the combo of normal increase in appetite because of growth /puberty plus medications. He talked about food and restaurants and eating constantly. Drove everyone nuts. He's gained 100 lbs in a year. Its nothing as intense now unless he really gets hungry. He still eats tons but not as obsessive.

    I pray they have done an MRI, I assumed they did, a contrast high level one at that, but if not of course it's important. Q had a huge mass by the time they found it. Even if they did, a repeat would be good because things are missed when small and with changes in number and frequency could mean something has grown.

    But, you probably know all that, just sharing.
  5. paperplate

    paperplate New Member

    Thank you both. Yeah, he's had an MRI, but I think it's time he get another. His last one was 3 years ago. When the seizures were mainly tonic clonic. Actually, I thought the seizures were from brain injury from playing tackle football in 2nd,3rd and 4th grade. But there was nothing on the MRI. No lesions, tumors, bleeding etc... But my family has a lot of Epilepsy. Several cousins, one died from SUDEP, some Aunts and Uncles. I didn't find out until last year. I was adopted and had no medical records for family (they REALLY NEED TO CHANGE THAT!). I finally met them all, and I mean EVERYONE last year. They flew in from all over the country. That's when I finally got a decent medical history. So now neuro says it's a genetic form.
  6. buddy

    buddy New Member

    Yeah, sounds like it. Have they done a genetic profile so you can give that info to your kids? Q had genetic testing too because he is adopted and one bio bro has autism.
  7. HaoZi

    HaoZi CD Hall of Fame

    I'm guessing the long-term memory loss is from the seizures? The short-term memory loss (I forgot my homework, I forgot to feed the cat, etc) can also be from the medication (my daughter is on the same one, but for bi-polar, and yes, short-term memory is a problem with her).
  8. TerryJ2

    TerryJ2 Well-Known Member

    Wow. I wish that they had told you earlier, too. But I can see why the dr wanted to talk to you.
    I am so glad that there are others on this board who can offer experience and advice.
    Many hugs.
  9. paperplate

    paperplate New Member

    Yes, it would have been nice to have the info sooner. Problem is, in closed adoptions, you don't get much information. Mom was a 16 year old and really didn't give much for medical. Basically height , weight etc... When I met her, it was 37 yrs later and obviously, by then, she was mature enough to give details. What they really need is some type of system that bio parents can update medical if they choose to, then the adopted child & their families can check it as needed. It would have been nice to know. When the seizures first started, we thought 'brain tumor!' Talk about a panic when u get sent for that first MRI. As far as his memory goes, it's probably the worst part in all of this. Basically, when he reads a book, it's like only reading every other sentence and than trying to comprehend it! But math isn't an issue. He's a human calculator. He does mass equations in his head. Maybe I need to help him find a career path involving mainly math. I've been looking into it, even found a couple of great math summer programs at the community college for kids:) So for now, he's getting blood work every 4 weeks to check toxicity, and his next neuro is 3 months away. So at least we get a break from the CONSTANT doctor appointments. Feels like all we do is go to the doctors!
  10. TerryJ2

    TerryJ2 Well-Known Member

    That's a great idea, for the bmom to be able to update the medication info. Seems so logical.

    Yes, yes, yes, he needs a math career!~ :)

    I know what you mean about only going to doctors. Sigh.
  11. susiestar

    susiestar Roll With It

    I am so sorry. Seizures can and do affect EVERY SINGLE ASPECT of a person's life and behavior. If the brain has an impact on the behavior, a seizure can too. WIth that many seizures, he NEEDS more help. I would push to find out what can help other than just increasing one medication. are there non-medication things that can help? What are they? Ask about a therapy dog. I know several people hwo have them for epilepsy, though I don't know what the dogs do to help. I just know that the people with them say they help in a lot of ways.

    What research have you done on the type of seizures he has? Sometimes we have to find the info and alternatives and take them to the docs. Lots of times, actually/ (I have gotten most of my diagnosis's after I did research and took into to my docs, not the other way around sadly. Thank heaven for the internet because you can access so much different info on almost anything.)

    If he is having this many seizures, what do they want you to do to stop them? These can be causing damage to his brain, and a new MRI should be a high priority. Consider asking for a functional MRI and/or a PET scan of the brain. I don't specifically know how these help, but I do know a few people who got a lot more effective help for seizures after them. One cousin was subjected to various things that they thought were causing seizures and they used an MRI to see how she was affected by them. They were able to give her more help after that because they had more info about what was going on.

    having Medicaid in addition to the reg insurance means these things are not as hard to get. We actually got more testing and treatment with medicaid than with reg ins because I don't know why, but it was very helpful and cost us nothing at all.

    Please push the docs to treat this aggressively and to stop any medications that might increase seizures, like stims esp.