Our toddler has similarly bad meltdowns and honestly the only thing that works for us is just never introducing the things that set her off. So we don’t let her have phones, computers, or let her play in the car anymore because there’s no amount of using those things that she thinks is enough and moving on from it results in a tantrum so bad that it negates any of the positives that made it worthwhile.

And randomly, the other day when she was in the middle of melting down after a particularly bad day of hours worth of back to back meltdowns, I told her it was okay if she was really upset for her to go to her room and cry and she actually walked herself to her room and climbed into bed and cried until she fell asleep, where she slept for two hours and woke up in a great mood at 7pm, lol…

Maybe OCD? This resonates with me

Op here.

I’m just bumping this up.

We continue to struggle hard with meltdowns.

DS is turning 4 next month.

I feel like we go hours and hours now where he’s melting down and we are in appeasement mode trying to deescalate.

So for example, on Sunday DS wanted to watch TV all day. We allowed him to watch an hour and then turned the TV off. We spent the rest of the day with DS either screaming/melting down wanting TV, or in a momentary reprieve from him asking for TV (never lasting more than a few minutes). This went on from 9 AM until bed time at 8 PM. We left the house and went to the park, DS screamed the whole drive for TV. We went swimming (we live in a California), DS refused to get in and laid next to the pool screaming for 45 minutes begging for TV. No matter what we did, he would not let it go. He probably asked for TV more than 1000 times (I am serious!!).

I feel completely defeated. What do I do? I don’t know how to parent my son. I feel shattered, exhausted, discouraged.

Anonymous wrote:

Anonymous wrote:My kid also has a rare form of epilepsy and has many of the behaviors you’ve described. Did you consider whether the keppra dose is too high? You may have some room to move down without drastically changing the seizure control. We recently moved one of DD’s meds and were shocked at how significantly it had been impacting her behavior. Also, I wouldn’t underestimate how much your kid is at the age for ridiculous tantrums over nothing. Our daughter has delays and is just now getting into big time tantrums at 3.5. Maybe a little late to get started compared to typically developing toddlers, but hopefully this to will come to an end. Also, it may not be indicated for your kid’s epilepsy, but we recently started a keto diet and it has had the most profound impact on behaviors. I’ve been saying forever that it was only a matter of time before our kid was diagnosed with ADHD, and since starting keto she has actually sat still and focused for extended periods of time on various activities. It’s been amazing and 100% worth the challenges keto brings.

Op here. I’d love to get him off the Keppra and I’ve wondered how much of a factor it is (he’s been on it for 2.5+ years so we don’t even know what he’d be like off of it!). But we’ve tried and seizures came back. I don’t think we can go lower. I’ve wondered if a different med might work better. I’ve heard good things about lamictal but our neuro has been reluctant to have us switch.

Are you doing keto in the ultra strict seizure control sense of the word? I gotta admit, I’m so intimidated by that idea but your comment makes me think we should seriously consider doing jt

Yes, we're doing the ultra strict, medically supervised version of keto - 4.3:1 ratio (our ratio is even higher than the strict version to account for carbs in DD's liquid meds since she isn't old enough to switch over to the pill forms of her medicines). But our kiddo is on three different meds and was still having daily seizures when we started keto. You may not need as strict a ratio to get good seizure control and replace or reduce keppra. We were extremely hesitant to start keto because we thought it would be overwhelming, and it turns out to be super easy. Our kid LOVES keto foods and she was at times a super picky eater before keto. Now she eats everything we put in front of her (and I promise, it's not because our keto recipes are delicious in any traditional sense of the word). But it has had such a profound impact on our kid's behavior and development in particular. Our neurologist recommends sticking with keto for three months before determining whether it's adding value, but if it isn't, it's easy to stop. If you do look into, (and you're in the DC area), I would highly recommend starting keto up at Johns Hopkins over Children's hospital. I have never heard anything good about Children's keto team and have heard a couple of stories where they really dropped the ball in dangerous ways. Dr. Kossoff and his team up at Johns Hopkins is excellent.

I used an app called Choiceworks on dd's ipad. It has a schedule /visuals and you can make a schedule-and the child can make it speak the schedule and then move the acitivty to the 'done' column.

My dd loved it at the time (she doesn't need that anymore).

dp. definitely give visuals/social stories a try. They have helped my ds tremendously

Anonymous wrote:I’m missing the why here. Why does he have the tantrums?

Does he not want to do what you ask? If so are your directions clear? Are you using visual supports? Are you consistent? Just because you think he fully understands doesn’t mean he does.

Does he have sensory issues?

Ultimately your child is emotionally dysregulated and needs tools to help him calm down. You have to teach these when he’s feeling fine.

When you go to the park for example you have to show him what you need him to do. Ex. We are going to walk in the park, to stay safe first you have to walk with mom then we can have fun. When we run from mom it’s not safe and we will have to go back.

You can have a picture of him next to you to remind him. When he’s unable you have to follow through and go back.

Nothing will be a magical cure, it’ll take a lot of practice and time.

You can also ask his teacher how he walks with the class around school.

And a schedule seems like generic advice but your doctor is right. Idk if they said a visual schedule but you should have one. And a first then board to help remind your child about what’s next. (NOT to incentivize your kid to listen. No first listen then candy, that doesn’t work long term)

Op here. He has tantrums most often because he wants something he cannot have. There are other times when we don’t know or understand why he’s melting down. Just this morning he had a tantrum because he wanted to wear my flip flops and I wouldn’t let him. Then he had a tantrum because he wanted us to go for a drive, but it wasn’t possible to do that this morning.

He does sometimes engage in sensory seeking behaviors, but I’m not sure if that means he has sensory issues? He is totally fine with eating any kind of food, wearing clothes, etc. those things don’t bother him. He does seem to get overstimulated with too much noise/activity, so we avoid situations like that.

I do try to walk him through the steps for different activities but haven’t tried visuals. I’m not sure if that would help. I can give it a try.

Anonymous wrote:My kid also has a rare form of epilepsy and has many of the behaviors you’ve described. Did you consider whether the keppra dose is too high? You may have some room to move down without drastically changing the seizure control. We recently moved one of DD’s meds and were shocked at how significantly it had been impacting her behavior. Also, I wouldn’t underestimate how much your kid is at the age for ridiculous tantrums over nothing. Our daughter has delays and is just now getting into big time tantrums at 3.5. Maybe a little late to get started compared to typically developing toddlers, but hopefully this to will come to an end. Also, it may not be indicated for your kid’s epilepsy, but we recently started a keto diet and it has had the most profound impact on behaviors. I’ve been saying forever that it was only a matter of time before our kid was diagnosed with ADHD, and since starting keto she has actually sat still and focused for extended periods of time on various activities. It’s been amazing and 100% worth the challenges keto brings.

Op here. I’d love to get him off the Keppra and I’ve wondered how much of a factor it is (he’s been on it for 2.5+ years so we don’t even know what he’d be like off of it!). But we’ve tried and seizures came back. I don’t think we can go lower. I’ve wondered if a different med might work better. I’ve heard good things about lamictal but our neuro has been reluctant to have us switch.

Are you doing keto in the ultra strict seizure control sense of the word? I gotta admit, I’m so intimidated by that idea but your comment makes me think we should seriously consider doing jt

I’m missing the why here. Why does he have the tantrums?

Does he not want to do what you ask? If so are your directions clear? Are you using visual supports? Are you consistent? Just because you think he fully understands doesn’t mean he does.

Does he have sensory issues?

Ultimately your child is emotionally dysregulated and needs tools to help him calm down. You have to teach these when he’s feeling fine.

When you go to the park for example you have to show him what you need him to do. Ex. We are going to walk in the park, to stay safe first you have to walk with mom then we can have fun. When we run from mom it’s not safe and we will have to go back.

You can have a picture of him next to you to remind him. When he’s unable you have to follow through and go back.

Nothing will be a magical cure, it’ll take a lot of practice and time.

You can also ask his teacher how he walks with the class around school.

And a schedule seems like generic advice but your doctor is right. Idk if they said a visual schedule but you should have one. And a first then board to help remind your child about what’s next. (NOT to incentivize your kid to listen. No first listen then candy, that doesn’t work long term)

My kid also has a rare form of epilepsy and has many of the behaviors you’ve described. Did you consider whether the keppra dose is too high? You may have some room to move down without drastically changing the seizure control. We recently moved one of DD’s meds and were shocked at how significantly it had been impacting her behavior. Also, I wouldn’t underestimate how much your kid is at the age for ridiculous tantrums over nothing. Our daughter has delays and is just now getting into big time tantrums at 3.5. Maybe a little late to get started compared to typically developing toddlers, but hopefully this to will come to an end. Also, it may not be indicated for your kid’s epilepsy, but we recently started a keto diet and it has had the most profound impact on behaviors. I’ve been saying forever that it was only a matter of time before our kid was diagnosed with ADHD, and since starting keto she has actually sat still and focused for extended periods of time on various activities. It’s been amazing and 100% worth the challenges keto brings.

Anonymous wrote:

Anonymous wrote: I would defenitely bring this up with his epilepsy dr OP, if you haven't already.

I think you should get an OT eval. It helps many kids and is harmless if it isn't helpful for yours.

Op here. We’ve discussed with our epileptologist. We thought this might be because DS is on Keppra. Doc said, eh, maybe, but the other meds have similar or worse side effects. Basically the epilepsy doc is only concerned with seizure control and wants everything else developmentally to be addressed with developmental ped.

For the OT EVAL, do you know how often insurance will cover it? We had one 2 years ago, but obviously DS is way different at 3.5 than he was at 1.5. That eval (not that it matters!) showed he was mostly on track. Our speech therapist says they only eval once every 3 years. I hope OT isn’t as restrictive.

My insurance covers an OT eval once a year.

I had a 3 year old who had major meltdowns. Most likely sensory based. DS is now 6 and a lot of that has faded. We did do OT (started right before the start of the pandemic so not in long term). I think it helped but a big part of it was because the OT took place in a kids style gym with things to climb and swing from. We also did a brushing protocol that was calming for my DS. My DS really liked it. You mentioned that he is melting down at home - maybe he does need some more undivided attention. Maybe you need a more PITC approach? This was really helpful for my child. I am ADD (inattentive) myself so I am sure I was distracted with my son. I did give my son plenty of one on one time but maybe it wasn't enough "quality" time. And my son is more on the anxious side so I think he needs more time then typical kids his age do to have their "cup filled".

Anonymous wrote:

Anonymous wrote:
Op here. You make a good point. School is out for the summer but I’ll ask them when it resumes.

I should also note that we have a full time nanny, and he doesn’t meltdown with her either, and he’s with her 30 hours a week.

I’m not sure what DH and I are doing wrong that DS melts down so much specifically with us. It makes me think it’s our parenting. I’ve asked our nanny and she doesn’t have any magic wand. I do think it helps that she’s with him nearly one on one all day and she gives him her undivided attention pretty much every minute of the day, whereas DH and I tend to be more distracted/multi tasking and also aren’t able to provide continuous one on one nurturing attention every minute.