Desperate Need of Help for Adult Daughter with Seizure Disorder

get a list of doctors that accept medicareand read their reviews. someone wh will give her a thorough examination

Hello @abalthas and welcome to Mayo Clinic Connect. I can read the desperation in your post. From what I am reading, it sounds like your daughter's neurologist has recommended an EEG as the next step but you are unable to physically get her to the hospital? Is that your main issue with pursing treatment? EEGs shouldn't, I believe, require an in-hospital stay but you could verify that if you are concerned about being covered by Medicaid.

My daughter is very fragile mentally. She suffers from panic attacks on a daily basis. She has cerebral palsy on right side and is unable to walk. She often says she is "out of her body" I would like to have her admitted so she can have the EEG and be monitored, She is mentally paralyzed because of fear of seizures as well as physically. I just feel helpless and hopeless - it rips my heart out to see her go through this knowing there's nothing I can do. Her only insurance is Medicaid

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She is unable to cope - says she wants me to arrange for "assisted suicide" as she can't cope with the fear of seizure any longer, Medicaid is of no help - can't even provide psychiatric help for her

@abalthas, I can imagine that it rips your heart out to see your daughter being mentally paralyzed such that she cannot get to the care that would help her.

Compassion & Choices is a useful website to learn about medical aid in dying. It is not legal in every state and she may not qualify. https://compassionandchoices.org/resource/states-or-territories-where-medical-aid-in-dying-is-authorized
You can also call 1-800-247-7421 to speak with an end-of-life consultant. They may offer some assistance in how to talk with someone like your daughter who may not be ready for end of life but crying out in desperation. There are options. See more info here: https://compassionandchoices.org/contact-a-consultant

The 988 Crisis Line also offers some tips on how to talk with someone who wishes end of life would come sooner https://988lifeline.org/help-someone-else/

My Help Navigator may be able to help you find free or low cost psychiatric care and more, check out this website and search engine called "My Help Navigator". https://myhelpnavigator.auntbertha.com/
All they have to do is enter your zip code to find service in your area.

Using the Navigator, you may also be able to find access to a free social worker in your area who could help navigate the next steps. They may be able to recommend in home care or virtual care that would help your daughter make the first steps towards getting the care she needs.

@abalthas
Are your daughter's seizures active or controlled? Has she actually had a seizure or is she just concerned about the possibility of having one? What type are they and how often if she has them?
Seizure disorders are normally easily diagnosed on an outpatient basis. If your daughter is having a routine EEG that only lasts 20 to 45 minutes what’s the point of a hospital admission?
Chances of the EEG showing an actual seizure are quite slim. Even if the EEG shows abnormal electrical activity, the chances are at best 50-50 that the doctor will know the cause of the seizure. Seizures can happen anywhere anytime. It sounds as though your daughter is afraid of falling and getting hurt.
Injuries are sometimes a consequence of having a seizure disorder. I’ve had multiple shoulder surgeries and more stitches, staples and glue from minor injuries than I care to think about.
She needs to control her seizure disorder, not let it control her. Easier said than done sometimes.
What has been done to help control her fear and anxiety?
Anxiety can cause seizures in some people. Can friends, neighbors or relatives help you? Would Uber or Lyft be an option? Where I live, they have something called dial-a-ride that takes people to medical appointments.
Would Uber or Lyft be an option? Sounds like a counselor is needed and they can do that virtually.
Best of luck to you,
Jake

Hi @abalthas
I can very well understand your despair and anguish with your daughter!!! I am so sorry for both of you! But always remember that God does not give such challenges to weak shoulders. I know that perhaps saying that is not of much help in this moment of despair. I myself, have prayed to the Lord to take me back home many times during difficult times of my epilepsy treatment as I thought I did not have the strength to deal with it. I see I was wrong, that I had strong shoulders to face this situation. But in a moment of despair, we are just emotions.
As many have already said here, you do not need a hospital stay for an EEG. I have done my EEGs in a private healthcare institution that provides medical diagnostic services to patients and is covered by my insurance. But I do not live in the United States. Would that not be a possibility instead of doing this EEG in a hospital?
Is your daughter being helped by a psychologist to deal with this fear of seizures? My neuropsychologist who has been with me almost since my diagnosis in 2019 gave me much support in the whole process of treatment and in those difficult times. I do hope your daughter's insurance does cover such treatment.
My best vibrations to you and your daughter!
Santosha

Hi Jake,
My daughter has cerebral palsy on right side. For several years she was able to walk with a gait. Once she started having seizures she stopped walking, I was able to get her in a wheelchair and get her to appointments, now, she has severe anxiety and gets several panic attacks a day, Any loud noise will make her cry. I am unable to move her as she has gained weight . As I mentioned she is afraid to move for fear of seizure - she shakes and her muscles tense up, has bitten her tongue. I have tirelessly tried to find a psychiatrist/psychologist to work with her online to no avail. She is very intelligent - all she has ever wanted in life is to live on a farm - she loves animals. I am 75 and still working, doing my best to care for her. My nerves are worn down but I'm all she has. Her biggest fear is I will put her in managed care somewhere which I have tried to avoid as I know she would not survive as she is very set in her ways.

Hi Santosha,
Unfortunately I am unable to transport my daughter - she had a Penn neurologist but she stopped treating her because I couldn't get her the EEG. Even stopped prescribing her Lamotrigine so I needed to ask primary care doctor to do; otherwise she would have no seizure meds. I have never heard of a psychoneurologist but that sounds like it would be helpful. I appreciate the kind words

@abalthas
@colleenyoung suggested a social worker. They can be very helpful.
Calling Medicaid may offer some suggestions you haven't thought of. My handicapped cousin had Medicaid and they provided him transportation. They even paid to have him transported to my house, a 600-mile round trip.
If you live in an area that provides city bus service, buses are often equipped to accommodate wheelchairs.
There are also volunteer groups providing medical transportation.
Another helpful option might be to join Nextdoor. It's a computer program/app and provides a way to receive trusted information, give and get help, get things done, and build real-world connections with those nearby. People are very willing to help. I see it all the time.
The Department of Aging may have options as well.
Have you talked to your doctor regarding the availability of transportation needs?
Good luck,
Jake