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

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 hope this isn't a repeat of a comment that I jsut typed but it didn't seem to come thru?!
But here it is again just it case it got deleted or something went wrong..
There are many devices for those who don't speak and it depends on their current abilities. I've worked with those on the autism spectrum who are non verbal and there are so many devices. For beginners it's often a simple image of what they want...say a drink is a glass of water. or a happy or sad face to express how they are feeling.
I worked with a young lady who couldn't move at all and her team was working with her on a device that she just had to focus her eyes on the image. I worked with her on art and she would then focus on the square of the color she wanted or the shape she wanted and then we'd go from there as she let us know how she wanted her art to look. We would have to control her arm as she was unable to but she loved it. She would blink let me know where she wanted a shape placed on the canvas and then I'd put one there and assist her with the color she wanted to fill it it.
Never underestimate the power that lies within these kids! They may appear to be only 5 months old but they are in there....sometimes all it takes is the right method for them to communicate.
I would think the health team you work with should be able to direct you to a communication specialist to take a look and see what might work and try different things. But sometimes one needs to advocate and push for it. Especially when you have a doctor that says they won't be able to do anything. And it seems your son has already surpassed what his doctor thought he'd be able to do.
Also....each person will be ready for communication devices when they are ready....sometimes you need to try again later on as the person has so many other things they are dealing with internally that we have no idea about and just aren't ready yet.
Also his feelings of anxiety and irritation may be caused by his inability to have a way to communicate! This I've seen is a real problem for non verbal people. Another young man i worked with was just out of high school and non verbal and would have many outbursts. but once his parents got him introduced to a specialist in communication devices and methods he was finally able to get his thoughts to others and his outbursts were greatly reduced. He was also one of those who just wasn't ready for anything like that when he was younger and in grade school but as a young adult when introduced to it again he was ready. We figured he was over with trying to figure life out with school and such and now that he was done with that he was ready to move on.
So if at the least this could help get your son to express when he isn't feeling good or where something hurts etc. I imagine it would be very helpful for both of you.
I wish you the best in finding answers with the gi stuff going on and I hope you find someone to assist in getting communication at some level with him.

@dlb123 Thank you very much! This information is very valuable to me. I will talk to my son's specialists about this. They have been with us and helped us through very difficult times, so I know they will be willing to support us. Sometimes we have too many emergencies and that distracts us, but whenever we can, we try to stay up to date. At first it was very easy, every time we went to the hospital or to a new appointment, we could talk to other families and share the news, but now it's complicated. Since the pandemic, we avoid crowded places and we also go to appointments at scheduled times. That's very good for avoiding respiratory diseases, but it keeps us a little disconnected. Thank you very much for your good wishes, we always need them!!

You would want to find a Speech Therapist: here's what google says they all do.
"a speech-language pathologist (SLP) is essential for helping individuals with communication devices, as they assess needs, select appropriate Augmentative and Alternative Communication (AAC) systems, program and train users on the device, and provide ongoing support and modifications. SLPs collaborate with families and other professionals to ensure the device is functional and integrated into a supportive environment.
How SLPs Help with Communication Devices:
Assessment:
SLPs conduct thorough evaluations to determine if an AAC device is suitable and to identify the specific communication needs and abilities of the individual.
Selection:
They help explore different AAC systems, including low-tech and high-tech options like speech-generating devices, to find the best fit for the person's unique requirements and goals.
Training & Implementation:
Once a device is chosen, the SLP provides training to the individual, their family, and caregivers on how to use, maintain, and get the most out of the device.
Programming:
SLPs program devices with appropriate vocabulary, including core words (used in everyday communication) and fringe words (specific to particular activities), to ensure effective communication.
Access Methods:
They can teach various access methods for devices, such as eye-gaze technology, switches, or help from other people.
Ongoing Support:
Communication needs can change, so SLPs provide ongoing management and modifications to the AAC system to ensure it continues to meet the user's evolving needs.
Collaboration:
SLPs work with a team of professionals and the user's support network to create a comprehensive communication plan that is supported in all aspects of the person's life.
Funding Assistance:
In some cases, SLPs can assist in identifying funding sources or help complete paperwork for insurance companies to cover the cost of communication devices. "

And remember....he might be crying out or showing signs of anxiety like a 5 month old, but that could be because his brains ability to bring speech thru the system and out his mouth is not connecting properly. Thus doctors will often just assume it's severe cognitive delays and there is no hope. People on the autism spectrum have dealt with this all their lives with people thinking they have no intelligences when it's just they have no way to communicate when they are non verbal and so they stick to what they know--usually crying or lashing out physically to make a point or get what they want/need. They truly don't know what's going on inside and it's certainly worth a try as all humans have a need to communicate on some level, it's just not always with spoken words. Babies, even as newborns, communicate the best they know how and that's with crying right?

Hi @dlb123. Really appreciate your good wishes and thoughts for @kari33.

Just wanted to mention since you talked about what you noted in Google, or Google AI overview using their AI tool called Gemini, that AI assistant tools absolutely can help begin an information search. Please do keep in mind that AI tools are not 100% accurate, and you will always want to fact check. I had to do this when I asked an AI assistant about some college scholarship information for our son. I had to then go to the site for each college to verify the information. Tedious, but useful since I found some discrepancies.

To help offer guidance on using AI tools safely when looking for health information, please see this blog written for Mayo Clinic Connect members:

- What is Generative AI? What does this mean on Mayo Clinic Connect?
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/what-is-generative-ai-artificial-intelligence-what-does-this-mean-on-mayo-clinic-connect/
The Google AI overview via Gemini pulls information from many different sources. For that reason, we recommend that you always:
1. Fact check everything before posting on Mayo Clinic Connect.
2. Check the sources or ask the tool for the original sources, so you can mention those in any post.

Have you taken some esomeprazole (Nexium) or some other gastric protection medication in your journey to a solid gastrointestinal diagnosis, dbl123? If so, how did it work for you?

You would want to find a Speech Therapist: here's what google says they all do.
"a speech-language pathologist (SLP) is essential for helping individuals with communication devices, as they assess needs, select appropriate Augmentative and Alternative Communication (AAC) systems, program and train users on the device, and provide ongoing support and modifications. SLPs collaborate with families and other professionals to ensure the device is functional and integrated into a supportive environment.
How SLPs Help with Communication Devices:
Assessment:
SLPs conduct thorough evaluations to determine if an AAC device is suitable and to identify the specific communication needs and abilities of the individual.
Selection:
They help explore different AAC systems, including low-tech and high-tech options like speech-generating devices, to find the best fit for the person's unique requirements and goals.
Training & Implementation:
Once a device is chosen, the SLP provides training to the individual, their family, and caregivers on how to use, maintain, and get the most out of the device.
Programming:
SLPs program devices with appropriate vocabulary, including core words (used in everyday communication) and fringe words (specific to particular activities), to ensure effective communication.
Access Methods:
They can teach various access methods for devices, such as eye-gaze technology, switches, or help from other people.
Ongoing Support:
Communication needs can change, so SLPs provide ongoing management and modifications to the AAC system to ensure it continues to meet the user's evolving needs.
Collaboration:
SLPs work with a team of professionals and the user's support network to create a comprehensive communication plan that is supported in all aspects of the person's life.
Funding Assistance:
In some cases, SLPs can assist in identifying funding sources or help complete paperwork for insurance companies to cover the cost of communication devices. "

And remember....he might be crying out or showing signs of anxiety like a 5 month old, but that could be because his brains ability to bring speech thru the system and out his mouth is not connecting properly. Thus doctors will often just assume it's severe cognitive delays and there is no hope. People on the autism spectrum have dealt with this all their lives with people thinking they have no intelligences when it's just they have no way to communicate when they are non verbal and so they stick to what they know--usually crying or lashing out physically to make a point or get what they want/need. They truly don't know what's going on inside and it's certainly worth a try as all humans have a need to communicate on some level, it's just not always with spoken words. Babies, even as newborns, communicate the best they know how and that's with crying right?

@kari33
Would you share what anticonvulsant/s your son takes?
I assume he is taking his medication with food.
What type of seizures does he have?
Take care,
Jake