Our son was diagnosed with CAE when he was 3 years old, he's now 11 years old & under his consultant was gradually weaned off his medication as he had been seizure free for two years
So since November 2021 he's not been medicated, however over the last two months (from April 2022) we've noticed he's been having what we think to be absent seizures which is having a massive effect on him at school & at home. It's causing his mood to change, he's very tired, he gets headaches & loses… read more
Quite agree with Randy why mess with his meds when he's seizure free? At least wait till older then closely monitor via EEGs to see how change affects him. Neither of you should've had to go through this. Please get a 2nd doctor to consult & help with this.
That upsets me a lot. If his consultant want to wean him off meds, he/she should of started with inpatient EEG for 5-8 days. Then they could wean him down on his meds . They would of gotten answers that way, plus it’s much safer.
Being off meds that long and still having seizures can possibly change seizures patterns and increasing to other parts of the brain faster. Instead of having seizures in a certain area, that certain area may get bigger or may start having seizures in a different area of the brain.
Everything the consultant is doing is wrong. He/she should of left your son on the medication, seizures free. At least until the medication stopped working. You may want to find a different specialist. Pray that they make better decisions.
I started having these seizures at age 6. I’m 52 now. I too was taken off my meds when I was young and it also affected my learning, my sleep and my demeanor. My seizures returned at age 16 with my first Granma seizure. I’ve been struggling with all sorts of seizures and mental illness sense then. It was 1976 when I had my first seizure but I was not diagnosed until I was 9. I was probably getting into trouble because my dad thought I was just being a difficult kid.
Your son is very fortunate to have parents that are attentive to his illness. I won’t give too much advice but I will say how important it is for him to realize that you understand that he is sick and you love him and care about him. This does not mean he gets a free pass in life. In fact in my opinion there needs to be a balance between your care and his responsibilities. Only his parents can decide what that is with the help of the drs.
I was still able to play little league baseball but football was too stressful for me. I only know this in retrospect. Neither of my parents supported me in much of anything. I think they were overwhelmed with 4 boys and me being the youngest they were tired and didn’t really understand what they were doing.
I suggest supporting your son in whatever he enjoys if it safe. The very hard thing to deal with is how alone and confusing it can be on people who suffer from chronic illnesses. Your love and understanding will help more than you may see right now.
I was also very tired and often couldn’t get out of bed. My dad’s way of dealing with me was by force and it made things much worse. Just be patient and understanding but not allowing him to use his illness as an excuse to not live his life. It may be harder for him but he can live a pretty normal life. As an adult I have more problems with the lack of care than I did with the actual seizures.
God bless you and your family!
I've had absence seizures (Jeavons syndrome) my entire life. Most of it was med-free because we didn't feel the the side effects of the meds that were available in the 80s justified the pay-off. I don't want to sound like I'm peddling unscientific methods, but here's the background: we tried a bunch of natural stuff. Didn't control seizures (no surprise there). But we used diet to raise the seizure threshold, and that helped manage my blood sugar and therefore my moods. At least, that's what happened in hindsight. Still had dozens of seizures a day (that I was aware of).
(And I still see a naturopath to help with medication side effects. Can share more in a later post if interested.)
I tried meds in my 20s, but by then, I'd met my husband, so I came off them to have kids. Am now in my 40s and trying again. Am aiming for reduced seizures instead of full seizure control. Full control isn't worth the side effects for me.
But I am in no way advocating for no medication. I just want to be clear what my experience with them has been. The 80s sounded like the Dark Ages for absence seizures in children (from what I've heard--maybe others feel otherwise).
It sounds like your son's seizures impact his life more than mine have. But I did find that a good diet helped with the mental acuity. A science-based natural health practitioner might also help in between neurologist appointments if that's an option for you.
Mental health can also be hugely important. If your son's depressed because the seizures have come back, that can also affect his concentration.
Just reread your post. Your son's 11. Puberty. I was diagnosed at 11, got my period when I was 12. The whole-grain, wheat-free, dairy-free, sugar-free diet my mom had me on started then. It levelled my mood and reduced my seizures (but DID NOT suppress them). It did give my parents a false sense of hope, but this was pre-Internet, so we had no way of understanding that all we'd done was make my body healthier and ease the strain of puberty on my brain. (But yes, the restricted diet really sucked in social situations.)
So, I know I haven't really answered your question. We're all a little different, so I don't know if your situaiton is normal. But I'm hoping it might help to hear from someone who's had absence seizures for over 40 years. I can't predict your son's future, but mine has turned out actually pretty okay. I don't drive, but I've had no issues with employment (aside from restrictions brought on my not driving). I've travelled a lot, had a successful competitive dance career, and now I write. That your son has parents so dedicated to his health is wonderful to see. He'll be very thankful for everything you've done for him.
We never share your personal information with anyone.