How to replace esomeprazole (Nexium) for epileptic son or take a rest?

You can ask the doctor if famotidine would be good enough instead of the Nexium. Taking a break for 2-3 days doesn't sound like a good idea because it can cause an acid surge. Maybe 1 day wouldn't be a problem, but 2-3 days might cause it. So, if you do stop for a day maybe he'd need to take famotidine on the day he doesn't take Nexium.
Another option is to check if the dosage can be reduced and still be efficient enough for his needs.

Thank you very much ! I really hope that it works, it's so difficult trying to guess how he feels or if something is wrong because he can't tell us. Thanks for taking time to answer!

Hi @kari33. What a strong little guy you live with! I am so glad you found Connect as you continue learning to help your son with epilepsy and cerebral Palsy.

@t98 has provided such a thoughtful option your doctor may think will help as well. I commented recently in another discussion with my experience, my doctor recommending famotidine as an option to protect my stomach from aspirin I need to take.
- Alternative to omeprazole discussion: https://connect.mayoclinic.org/comment/1392780/

You bring up a tremendous challenge because he cannot tell you how he is feeling. How are you doing with all of this, mom? When is his next doctors appointment?

Famotidine is not as effective as esomeprazole to prevent bleeding ulcers that is why the Dr recommends it.

Hello @jharsh, thank you for answering! It's really exhausting trying to figure out what's going on because he has too many reasons to feel anxious, irritated or too sleepy ...I'm worried because I had NSAID gastropathy and I know how it hurts...even now, after 13 years I'm dealing with the side effects of taking Omeprazole for a year .We are waiting for a microbiome test results to add more information to the new blood tests. All this time I was blaming the antiepileptics for his side effects but now I've found out that Esomeprazole has more side effects that I didn't know about like having motility issues or low magnesium levels in the blood tests for no reason. So, we got a long list to accomplish: gastroenterologist, nutritionist and surgeon ( to replace the gastric. button). The nutritionist is doing an amazing job, because all of his meds interfere with his vitamins and minerals levels, so she gave us Vit D, a weekly dose of a Vit complex with extra iron and a Supplement with proteins and calcium to add to his meals.
I know that we can't resolve everything, but we keep insisting to improve as much as we can.

@8positive thanks, I'm actually going to discuss it with the gastroenterologist, but I needed to check other patients opinions first, because sometimes doctors underestimate side effects and don't pay attention until it's too late. I see some symptoms that don't have any other explanation so I 'd like to try at least for a few days and observe if something changes.

Does he not have a communication device to assist with any communication? Or are there other factors not mentioned beside cp? It's amazing who can all use equipment like that regardless of cognition levels and movement abilities etc.

His primary diagnosis is agyria lissencephaly with severe developmental delay, refractory epilepsy, and infantile cerebral palsy of unknown cause. Genetic tests came back negative, and there are no addictions; we don't smoke, use substances, or are alcoholics. The neurologist explained to us that he's one in a million; it just happens.
He's like a 5 month old baby, we understand him and he reacts like a baby when we talk to him... That's more than what doctors expected from him...I didn't mention it because I was trying to focus on the gastric problem. Not sure what devices you mentioned, I try to be updated but never heard of them for kids that don't speak.

I don’t want to get your conversation off topic, @kari33 but @dlb123’s comment makes me think of hearing something that may tweak your curiosity about technology possibilities.

Mayo Clinic’s “Tomorrow’s Cure” podcast July 9, 2025 episode Keeping Tabs On Health With Wearable Tech talks about remote access to information from patient wearables and ways various data is used. The one that may be helpful for your son, they call “real time interventions”.

An example explained in the podcast they are doing now uses various data items from a child’s wearable device. They can remotely detect a child is having a temper tantrum and provide guided therapy training or mindfulness activities to pull them out of it. Maybe data captured by a wearable could capture impactful changes unique to your son.

It may be well worth pursuing with an appointment, either a referral from a provider on your son’s care team, or just contact Mayo Clinic directly yourself: http://mayocl.in/1mtmR63

Oh, ok @jharsh, I'm really curious now, I 'm always looking for new ways to make him feel comfortable and improve his quality of life, but sometimes I lack information... I'm so glad I found all of you! It's been a long road fighting alone.