Seizures (and doctors...) Suck...

[Deleted]

Well, my son's seizures started up again. He had a few shorter ones in the last few weeks and yesterday afternoon had a long one - at work, of course.

His employer instituted a policy that if he has any seizure activity he has to go home for the rest of the day. Twice in the last week he's paid to get to work only to be sent home about an hour later.

We expect they will either stop scheduling him or let him go soon because they already told him he is a liability if he falls or burns himself during a seizure. 

If DS isn't working nearly full-time he can't stay down there because he just simply can't afford rent, food, and the costs of commuting.

His doctor in this area was balking at keeping him on disability before because his opinion is he just needs to find a job that will work around his seizures. How he's supposed to do that is our problem... So, he currently doesn't have a doctor in the new area and we already know the one up here isn't going to be helpful in any way.

He's once again complaining the back of his neck feels swollen and he feels lightheaded when he moves his head around. No one has ever explained this part of the issue. He did have an MRI and it showed no structural dwarfism related problems.

And, his therapist is becoming concerned because she doesn't believe this is any sort of mental health problem and that he's not been correctly diagnosed. She's still seeing him, but with a clear understanding she isn't doing anything for seizures. They all seem to have an issue treating someone for something they don't believe is wrong. Can't say I blame them.

We asked his therapist to contact the neurologist because our last attempt they said go to the "expert" at Stanford or learn to deal with the seizures. They don't seem to hear that not only doesn't Stanford see Medicaid patients, but they won't even see him if someone pays out of pocket for it because we don't live and can't afford to move to the Silicon Valley...

I find all of this insanely frustrating and stressful. I don't have any way to get down to that area. He is very adamant he doesn't want to move home. He can't stay there with no income. Argh...

[TheOtherMe]

[busymom]

I'm so sorry to hear he's struggling with seizures again (my own DS gets seizures, too).  Has he ever been evaluated for back problems, like vertebrae out of alignment, maybe compressing the spine?  I remember, reading somewhere, that some folks can actually get seizures from back issues.  If there's that chance, like, if he was in a car accident, or some other type of injury, maybe check with a chiropractor.



Best wishes, as I know figuring out the cause is SO frustrating!  

[Wisconsin Beth]

I'm so sorry to hear that he's having seizures again.  I was hoping he'd been done with them, based on some of your posts. 

[Tennesseer]

Sorry to read this, rockhounder.  

[WholeLottaNothin]

As someone with seizures myself, a neurologist is his best bet. I am so sorry he is having such a hard time with doctors. Is Stanford the only place around there that would have a neurologist? The doctor you mentioned in the area, is that just a GP?

[happyhoix]

This is terrible.  Since the therapist thinks this is not MH related, could she help refer him to a neurologist or some other specialist who could investigate what's going on with his neck?

[mmhmm]

I'm so sorry. Out of curiosity, has he ever seen a neuropsychiatrist? I don't know if there's such a critter available where you are but they can be really, really good at ferreting out difficult-to-diagnose conditions; particularly, those associated with the nervous system.

[Deleted]

May 17, 2019 12:13:03 GMT -5 WholeLottaNothin said:

As someone with seizures myself, a neurologist is his best bet. I am so sorry he is having such a hard time with doctors. Is Stanford the only place around there that would have a neurologist? The doctor you mentioned in the area, is that just a GP?

The epileptologist at UCSF ruled he has FND. Therefore, no one else will give an opinion or look into what's actually wrong.

The expert said it's a MH issue, so that's the diagnosis... Learn to cope with it. Find a better therapist. Get the insurance Stanford will take. Move to Palo Alto, that's the usual spiel. It's so frustrating.

Stanford has the only psych "qualified" to confirm the diagnosis or effectively treat it. In order to have anyone care this isn't a MH problem is to get this doctor who won't/can't see him rule this really isn't FND.

And, UCSF is one of the only places someone on Medicaid in No. CA can see a neurologist at all. DS can probably ask for a second opinion, but it will be a really long wait and I don't think it would likely change anything.

[Deleted]

May 17, 2019 12:20:13 GMT -5 happyhoix said:

This is terrible.  Since the therapist thinks this is not MH related, could she help refer him to a neurologist or some other specialist who could investigate what's going on with his neck?

When CA expanded medicaid under the ACA they made it like an HMO where you have one doctor who controls everything. 

The only way he can get a referral is from his primary care doctor. The one here said he has to believe the diagnosis from UCSF.

DS needs to move his Medicaid to the new area and get a new doctor. We've hesitated moving it because it could turn into a complete cluster if he ends up moving back here. All labs, medications, referrals, etc.. have to come from his "assigned" doctor or they aren't covered. And there is a wait time between locations when it's moved where he can't really see anyone.

[Deleted]

May 17, 2019 14:18:49 GMT -5 mmhmm said:

I'm so sorry. Out of curiosity, has he ever seen a neuropsychiatrist? I don't know if there's such a critter available where you are but they can be really, really good at ferreting out difficult-to-diagnose conditions; particularly, those associated with the nervous system.

The only one I could find was the one at Stanford and one in Walnut Creek. I contacted the one in Walnut Creek. He charged multi-thousands of dollars for a 3-hour assessment. He said he can definitively rule out conversion disorder but UCSF isn't likely to listen to his opinion and keep insisting only Stanford can adequately diagnose him.

At this point, DS's therapist is really concerned the seizures are back and have been getting more severe again. She doesn't believe at all this is conversion disorder. We've asked her to contact the doc at UCSF and at least talk to him, hoping they might listen to her...

[Opti]

Sorry to hear Rockhounder. I am in my usual seasonal allergy distress, so I will suggest for him to watch his fluids, etc. My blood pressure recently had a bottom reading of 94, which means I am retaining fluid, but is also a sign I am struggling to get my liquids in.
For me, this is a usual part of my recovery, especially since I am single with no one in house to shepard me through this.

Spring here has many extreme weather conditions, maybe there does too? Keep good records, and know I am pulling for you and your son.

[Works4me]

I'm so sorry this is happening again.
How is your son doing?
How are you doing?

[Deleted]

May 21, 2019 6:29:35 GMT -5 Works4me said:

I'm so sorry this is happening again.
How is your son doing?
How are you doing?

Thank you.

He hasn't had any more seizures for a few days. It's making it hard for him to plan his life, but he finds the seizures themselves mostly just annoying at this point. He applied for a new job and is waiting to hear about it. 

I'm doing better. I try to keep reminding myself there isn't anything we can do and the seizures will happen.

I started playing with paint and making jewelry because I find it really calming. It gives my brain something positive to think about and it does really seem to help. When my day job doesn't have a lot of writing work, it frustrates me as well, so having something else to work on has been really helpful. And, the extra income is nice as well.

The contest I entered was supposed to announce winners yesterday but changed the note on their website to next Monday. 

This was my stress relief project for the weekend. It's made of dried paint skins glued onto an old picture frame's glass. I will spend a few hours "quilting" it with a paint pen and then plan to cover it in resin.  

[finnime]

That's beautiful, @rockhounder. Sorry your DS isn't doing as well as he had been.

[shanendoah]

@rockhounder - I am so sorry you and your family are going through this. I know insurance often makes things worse, not better. I will say, a quick look at the CA Department of Managed Health Care page says you are entitled to a second opinion when your treatment isn't working. You should have his therapist contact his primary care doctor to recommend a second opinion.
And second opinions often have to come from out of network. Your insurance, even Medicaid, is pretty much always required to pay for a second opinion.
It is possible that you will find it possible to get into the doctor at Stanford if you specifically say it is for a second opinion. (Don't ask me why, but doctors seem to like second guessing each other, especially specialists.)

Otherwise, this really is the one area where the squeaky wheel gets the grease. You need to keep bothering the UCSF guy. Your son's therapist needs to bother him. You need to keep asking about the physical symptom of the swollen neck that accompanies seizure clusters.

[WholeLottaNothin]

May 17, 2019 9:21:08 GMT -5 @rockhounder said:

Well, my son's seizures started up again. He had a few shorter ones in the last few weeks and yesterday afternoon had a long one - at work, of course.

His employer instituted a policy that if he has any seizure activity he has to go home for the rest of the day. Twice in the last week he's paid to get to work only to be sent home about an hour later.

We expect they will either stop scheduling him or let him go soon because they already told him he is a liability if he falls or burns himself during a seizure. 

If DS isn't working nearly full-time he can't stay down there because he just simply can't afford rent, food, and the costs of commuting.

His doctor in this area was balking at keeping him on disability before because his opinion is he just needs to find a job that will work around his seizures. How he's supposed to do that is our problem... So, he currently doesn't have a doctor in the new area and we already know the one up here isn't going to be helpful in any way.

He's once again complaining the back of his neck feels swollen and he feels lightheaded when he moves his head around. No one has ever explained this part of the issue. He did have an MRI and it showed no structural dwarfism related problems.

And, his therapist is becoming concerned because she doesn't believe this is any sort of mental health problem and that he's not been correctly diagnosed. She's still seeing him, but with a clear understanding she isn't doing anything for seizures. They all seem to have an issue treating someone for something they don't believe is wrong. Can't say I blame them.

We asked his therapist to contact the neurologist because our last attempt they said go to the "expert" at Stanford or learn to deal with the seizures. They don't seem to hear that not only doesn't Stanford see Medicaid patients, but they won't even see him if someone pays out of pocket for it because we don't live and can't afford to move to the Silicon Valley...

I find all of this insanely frustrating and stressful. I don't have any way to get down to that area. He is very adamant he doesn't want to move home. He can't stay there with no income. Argh...




When I had that combination of symptoms was when I had mono in high school. Just a thought. I don't know why it is posting in the text box. Sorry.

[Deleted]

My son spent the other night in the ER in pain from more kidney stones. 

Ironically, there is some info online that oxalates that cause stones can also cause seizures in some people. Interesting.

He had the attack at work and was in so much pain all he could do was lay on the ground.

He's better now, but really worried about his job letting him go. It's so frustrating, because he can't do anything about it. Argh.

[countrygirl2]

I feel so sorry for you guys and your kids.  I know exactly what you are going through.  DD's blood pressure is to low, she is laying in bed to much. I get no answers, now we are having so much trouble drawing blood, how will she be monitored?  Only thing that helps us so far is she has traditional Medicaid which gives us more flexibility,  well at least in Indiana.  I'm sure we would have to have prior authorization to go else where. We are just biding time, waiting for something worse to happen.  I fear for ours an endgame is coming.  I hope those of you can help your kids as that's  different, and should be manageable situations. I say should be, but I know reality.

[Opti]

May 23, 2019 10:32:59 GMT -5 @rockhounder said:

My son spent the other night in the ER in pain from more kidney stones. 

Ironically, there is some info online that oxalates that cause stones can also cause seizures in some people. Interesting.

He had the attack at work and was in so much pain all he could do was lay on the ground.

He's better now, but really worried about his job letting him go. It's so frustrating, because he can't do anything about it. Argh.

Try to tweak his diet so he has less problems with stones. Cherries are in season now, and they help break up stones plus are supposed to be anti-inflammatory. 

Sorry about the job. Its frustrating leaving it in their hands, but not much more you can do except pray and read up on the laws. I don't know his full medical situation, but if he has stones, maybe that's a sign he should seriously cut down his calcium and anything else that contributes to their formation. 

[Deleted]

May 25, 2019 7:34:29 GMT -5 countrygirl2 said:

I feel so sorry for you guys and your kids.  I know exactly what you are going through.  DD's blood pressure is to low, she is laying in bed to much. I get no answers, now we are having so much trouble drawing blood, how will she be monitored?  Only thing that helps us so far is she has traditional Medicaid which gives us more flexibility,  well at least in Indiana.  I'm sure we would have to have prior authorization to go else where. We are just biding time, waiting for something worse to happen.  I fear for ours an endgame is coming.  I hope those of you can help your kids as that's  different, and should be manageable situations. I say should be, but I know reality.

So sorry to hear about your daughter. I've read your posts over the years and know you worry about her.

I really worry about my son's quality of life if he isn't able to work. Since I work for myself, I talk to him frequently about finding a hobby that could earn him some income at some point if necessary. It's a shitty thing he has had a lot of freedom driving and working and could lose that at such a young age. Argh. 

[countrygirl2]

I talked to the phlebotomist taking DD's blood, her son is autistic, she is going nuts trying to help him.  He is 20, and cannot get a drivers license had a job at a restaurant a couple days a week that closed down.  Now he has nothing, she cannot get help and doesn't know what to do.  It's after they get out of school is when people find there is no help.  Terrible situation.

[busymom]

May 29, 2019 10:44:41 GMT -5 countrygirl2 said:

I talked to the phlebotomist taking DD's blood, her son is autistic, she is going nuts trying to help him.  He is 20, and cannot get a drivers license had a job at a restaurant a couple days a week that closed down.  Now he has nothing, she cannot get help and doesn't know what to do.  It's after they get out of school is when people find there is no help.  Terrible situation.

   I'll send you a PM about an organization who may be able to help.  Hopefully they have offices in your home state.  

[Deleted]

May 29, 2019 10:44:41 GMT -5 countrygirl2 said:

I talked to the phlebotomist taking DD's blood, her son is autistic, she is going nuts trying to help him.  He is 20, and cannot get a drivers license had a job at a restaurant a couple days a week that closed down.  Now he has nothing, she cannot get help and doesn't know what to do.  It's after they get out of school is when people find there is no help.  Terrible situation.

It's horrible. SSI pays $900 a month and DS would get like $30 in food stamps. How is anyone supposed to live on that, much less get married, have kids, etc... It's crazy. I live on a similar amount, but I have a paid-off house and don't have to pay rent.

I reached out to the disability folks down where my son lives, but they only work with people who have mental disabilities.

The idea you should just get a job and expect an employer to work around your seizures, etc... is insanity. Perhaps if he had finished his education already and was established in a career position.

Not to mention, if he gets a decent job he would likely end up with so many expenses related to health care it would make no sense to work in the first place. Argh.

This is a global problem for people diagnosed with this condition. The support group is littered with people asking the same question.

Autism is going to be a HUGE issue as the years pass. Adults who are on the more severe end of the spectrum need millions of dollars in care.

[countrygirl2]

And I hate to say it, they make abortion illegal for greatly compromised individuals needing millions of dollars in care they are not going to do, then what?  So they are sentencing the extremely compromised to death after years of suffering.  Having seen so much of this is why I'm so against this life no matter what.  

These people should have to tour places where these people live and hospitals and nursing homes that have to care for them and take some home to take care of before being allowed to pass these kinds of laws.

[Deleted]

May 30, 2019 12:23:24 GMT -5 countrygirl2 said:

And I hate to say it, they make abortion illegal for greatly compromised individuals needing millions of dollars in care they are not going to do, then what?  So they are sentencing the extremely compromised to death after years of suffering.  Having seen so much of this is why I'm so against this life no matter what.  

These people should have to tour places where these people live and hospitals and nursing homes that have to care for them and take some home to take care of before being allowed to pass these kinds of laws.

I also hate to say it, but I think we treat our terminally ill dogs and cats better than people. 

I'll happily take the lethal injection over misery to save the taxpayers money. If I can die of an opiate overdose or drowning in my own fluids for days, thanks, give me the shot.

Instead, we put people on dialysis and other "life-saving" treatments and they go on to live with a horrid quality of life for way too long and cost millions upon millions of dollars.

I blame religion for many ills in the world, and this is at the top of them. And, the people who will only vote for people on the abortion issue. Lord, don't get me started....  lol 

I keep waiting for some lawyer to find the woman, or more likely women, the president paid for abortions for. You know they are out there. Then what for the die hard base? 

We also now have a society where it's hard to make enough money to get by, yet we expect people to somehow care for ill children and adults. When DH was ill, every relative we had held down at least one full-time job. Everyone always suggested family help us out. How? They were all working. It's so frustrating for so many people. 

I do smile sometimes that way back when this board started I would expound my opinions on that "horrible" socialist single-payer health care. Seems more people are coming around to the idea. lol

[countrygirl2]

Yes, I agree.  It was awful and sometimes still bothers me.  I told them to quit treating mom.  Her arms were black and blue from sticks for blood and she couldn't swallow and was on a feeding tube and down to nothing.  I would not have had it done but she wanted too.  The doctor racked me over the coals and she raised up and said well she can't just let me starve to death. She was off meds for the surgery, but I don't really think she understood.  The ER doctor said she had pneumonia and he didn't think she might live even with treating her so we stopped everything.  I could not stand to see her suffer more.  There comes a point and I agree.  Euthanasia or a lethal dose would be fine.  Problem is I fear that many would be killed for their money

[Deleted]

Yeah, late-DH's family couldn't be bothered to deal with his medical issues for two decades, then told me I was "killing him so I wouldn't have to take care of him anymore." 

People can be assholes when it comes to things they don't have to deal with.  lol

I've also wondered if they might have different opinions now that they had to care for their mother during her brain cancer and death. A bit of personal experience tends to change peoples' minds.