36 Comments

  1. I remember when I first heard of epilepsy and other seizure disorders. I was 13 and now I'm 16, turning 17 in July it was a very interesting subject to learn about since I started teaching myself. I'm new to your channel so I just heard about your son (He's cute btw😘😉). Love your channel and keep up the good work!!!

  2. Omg that brings me back to when my son was diagnosed 9 years ago with infantile spasms. My son was on kepra for years and hes been off it about 9 months and I dont see any differnece. I dont think it affected him at all. Stay strong xx

  3. Sending prayers your way . I have had epilepsy since I was 12 . I have been on three deifferent medications bc of the side effects. I have been on keppra the past 10 years and it is the best one yet no side effects at all .

  4. I’m 38 and have non epliptic seizures. I only got ale medicine lexapro at night. I have forgotten a few times and know that I get a little more antsy. I know he young and understand but medicine could help him and you might be able to wean him off, but t you found the answer and just take it one day at a time

  5. My 11 year old daughter is on Keppra and has been for a year now. I too was super nervous and scared about the side effects and my daughter not being herself. The first couple of weeks she was tired and sensitive. She would cry over small things such as sad parts in movies or if people were mean to other people. The rage and behavioral issues that you hear about is caused from a lack of vitamin B6. Any time a toddler, child, teen, or adult is put on Keppra, they're also told to take vitamin B6. After a month, she was doing really well and she still is doing very well. She's completely 100% herself. She still gets good grades, plays soccer, and does all the things she used to.
    We've had to increase her dosage a few times and all went well. There was no fatigue, sensitivity, and/or other side effects.
    Please keep us up to date as to how Griffin is doing on the medication.
    If you see anything you don't like, make sure to call his neurology dr right away and let them know. You, as his mother, have the right to change medication and do what you feel is best.

  6. My son has been on keppra for almost 6 years and it’s worked well for him. Seizure meds are different for each person, it puts my mind at ease knowing that he keeps seizures at bay.

  7. They use pot in colorado for seizures and apparently it works well with no side effects. I can not believe that guy did not spread that for you. I would have called the company to have them come back and spread it for you. They are also testing magnesium for all neurological problems and have had good results with it.

  8. Griffin is gonna be ok. The medicine will help him.
    Our son also gets medicine for his ADS and he is doing so much better. 🙂👍🏻 I was afraid at first too but it all turned out well!

  9. Hey honey I just want to tell you that I have Griffin in my prayers and he's going to be okay you take such good care of him and he's doing better so just hang in there and I will see you next time

  10. He’s the most joyful and adorable boy! Any medication they give him for seizures can’t possibly take away how happy and amazing he is! Good Luck with your decisions 🍀💜

  11. I’ve been having seizures as well. In fact, I had one back in February, on the 11th. Last Wednesday, I had an MRI and today I have an ultrasound because when I had the seizure, it came up in my blood work that my liver enzymes were elevated a little, so I’ll likely have to go on a dreaded diet. Yuck. I hate fruit and vegetables

  12. i'm going to be 42 on the 21st i have had seizures since i was 2 i'm on keppra and clonasopam those to together have got meto were i only have 2 seizures about every 2 r 3 months when before i was having them 3 to 5 times a week and they r grand mal so i would be out of it for a day then the seizure would start again and i would be back to where i was

  13. Please excuse me for my lack of knowledge here, I haven't done my research on Angelman syndrome to understand exactly what it is. All I really know is what you told us in your videos along with a super quick Google search. I have a question, so you know how with Autism for example there are some individuals that are high functioning and others that are low functioning. Is this the same for Angelman as well? Griffin to me seems like the average 3 year old despite some of the issues that he has. He socializes, plays, babbles, interacts with others among other things I've noticed while watching your videos and to me it seems as though he will be " high functioning ". I do understand that we only get as glimpse into your lives, but this is just my observation.

    And he is just so handsome with those beautiful eyes. I hope nothing but the best for him(and all of your children of course).

  14. It is good that they are keeping abreast of griffins test needs and then doing need a diagnosis and medicine change if and when necessary which is so much more than you know a year ago actually a little more than a year ago wasn’t it wow time is flying poor little Griffin , and we are all looking forward to his little shakes getting under control let’s just hope this medicine works better for him crossing our fingers saying our prayers big hugs to you guys and the beautiful children💚

  15. Emily and Will. Take one day at a time. Emily try and not think to far ahead. Things will work out for Griffin. You both are wonderful parents. I hope tomorrow is a better day. love and hugs Wow there are so many positive comments here. Thank you everyone for making Emily feel better with your real life experiences.

  16. EDIT: It's good news that they have documented seizures now. All of the watching and trying to catch it on video and the first EEG didn't show it. This one captured 3. I'm very happy to put an answer in your question column. Sadly, he has seizures, but you have witnessed more of them than anybody. Now, you are vindicated! I understand its bittersweet, but this is a victory.
    The first major jerking seizure at my house didn't happen until my stepdaughter was 16 years old. Looking back, we could see she had minute (like nanosecond) staring spells. She occasionally had a twitch, but not full-blown epilepsy, which is what she was diagnosed with. First and foremost, Emily, antiseizure medications do not change a child, except maybe to make them drowsy. It is not going to change his personality or behavior. He's still going to be Griffin on or off medication. You are so anxious about this that you've veered into What-IF land way too hard. You made an informed decision to choose a drug before Keppra because of mood changes. Let's see what this drug says. I was not sure what it was, but would like to know.

  17. Take it one day at a time. You and Will are AMAZING PARENTS and you will do what you feel is best for your children. Thank you again for sharing your lives with us all, I will continue to keep your family in my thoughts and prayers.

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