Need advice on how to balance safety and independence

@bstaedl
Epilepsy can definitely limit independence. Sometimes you have to bow to fate and accept that you need others assistance as much as you may not want to. However, speaking for myself, I needed my freedom to act as natural way. Be cautious of being overprotective. People with epilepsy fall and sometimes they get hurt but including focal seizures but so do people without epilepsy. Does your child have focal award/impaired seizures. Just eating can be dangerous if someone has a seizure. I believe that your child can't be independent with someone by their side all the time. Anxiety and depression are already major issues among people with epilepsy lower. I think low self-esteem, confidence, anxiety and depression may be more likely to happen. Of course some precautions are necessary for anyone with seizures. Because it's such a personal illness more or less restrictions are may be required.
Here are some safety tips
https://epilepsysoci
Take care,
Jake

@bstaedl
Epilepsy can definitely limit independence. Sometimes you have to bow to fate and accept that you need others assistance as much as you may not want to. However, speaking for myself, I needed my freedom to act as natural way. Be cautious of being overprotective. People with epilepsy fall and sometimes they get hurt but including focal seizures but so do people without epilepsy. Does your child have focal award/impaired seizures. Just eating can be dangerous if someone has a seizure. I believe that your child can't be independent with someone by their side all the time. Anxiety and depression are already major issues among people with epilepsy lower. I think low self-esteem, confidence, anxiety and depression may be more likely to happen. Of course some precautions are necessary for anyone with seizures. Because it's such a personal illness more or less restrictions are may be required.
Here are some safety tips
https://epilepsysociety.org.uk/about-epilepsy/sodium-valproate
Take care,
Jake

@bstaedl
Sorry about all the wrong and extra words. I'm not able to correct them.
Jake

As much independence as your adult child can safely handle. Definitely no tub baths alone! A delicate balance between their desire for independence, a safe environment, your ability to monitor, and doctor guidelines. I would take cues from your adult child. Are there certain things they used to enjoy, or would like to do, that they can do safely ? Lastly, caregiving can be exhausting - don’t forget to take care of yourself. There may be some community resources available to assist, possibly even relieve you of 24/7 vigilance. Wishing you both all the best.
https://www.ninds.nih.gov/health-information/disorders/rasmussens-encephalitis

Hi @bstaedl
Might perhaps a seizure dog be helpful to you and your daughter? Depending on the training, a seizure dog can even sense a seizure coming before it happens, as I have learned. This might give not only more independence to your daughter, but also security to you. I, myself, have researched much about that and would love to have a seizure dog next to me. But this is not possible now for several reasons. But it is on my wish list.
Here is a link from the Epilepsy Foundation with more information: https://www.epilepsy.com/recognition/seizure-dogs
And here is a video on seizure dogs learning how to those dogs are taught to sense a seizure coming:

Hi @bstaedl
Another resource that just occurred to me is a seizure detector wearable that would alert you in case of a seizure. This could be helpful in case your daughter has some movements in those seizures you have mentioned (which I understand are partial seizures).
Here is a link from the Epilepsy Foundation:
https://www.epilepsy.com/make-difference/research-and-new-therapies/digital-tools/new-therapies-pipeline/update-smartwatch
But as I have researched there are also other smartwatches available. I have copied here the result of a research I did on that subject on You.com.

Yes, there are smartwatches available for detecting epilepsy seizures. One example is the Embrace2 smartwatch, which is the world's first FDA-cleared wrist-worn wearable for epilepsy. It detects possible convulsive seizures and instantly alerts caregivers, whether they are nearby or miles away. The Embrace2 is designed to offer round-the-clock safety and comfort for people with epilepsy.
Another example is the SmartWatch by Smart Monitor. It is a patented, intelligent, and non-invasive wristwatch that continuously monitors the user and instantly alerts family members or caregivers when abnormal motions associated with seizures are detected. In testing, the SmartWatch did not miss a single seizure and demonstrated a significant improvement in accuracy.
My Medic Watch is another option that offers an epilepsy and seizure alert app on smartwatches. The app detects seizures using smartwatch sensors and an accurate algorithm, and it sends notifications and GPS location to nominated caregivers based on predefined workflows of escalation.

Chris (@santosha)

Hi Everybody!
Does anyone know about a smartwatch that can detect non-motor partial seizures? I have been researching this for some time and understand that these smartwatches available today on the market can only detect seizures through body movements.
In my research, I have read about a subcutaneous device that can do this. Has anyone experienced this device here in our group?
Thank you!

I would strongly encourage you to learn more about the seizure detection dogs that Chris @santosha references.

I have raised service dogs for Canine Companions (previously Canine Companions for Independence) who would typically train dogs to assist people who were wheel chair constrained. Having a dog around that could open doors, turn on lights and pick things up without having to ask for help gave them their independence back. One of my dogs became a diabetic detection dog for a 13 year old boy with 3-4 low blood sugar detections per day. Besides monitoring the sugar level the dog also provided a social aspect for a shy 13 year old boy.

The dogs can provide a calming presence which is sometimes enough to prevent a seizure (in my case).

I have lived with epilepsy for 50+ years and independence has always been my north star.

-Greg

@santosha
That would be great but I have only heard of devices that detect convulsive seizures.
Great question to ask your Epileptologist.
Jake

For sure, I will do that, Jake - @jakedduck1. And I will let all here know what he has told me. I will be with him in August.
Have a nice day!
Chris (@santosha)