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Post by Deleted on Jul 13, 2019 8:27:59 GMT -5
This was a long, stressful week in my life...
My son's seizures are back. Not just the absence "can't talk or move" seizures, he's now having the convulsions, cramping, and mood seizures as well. And, they seem to be going on and on and on again all day, rather than just short events.
It's so incredibly frustrating! He went to work Thurs and Fri just to work for one hour and get sent home after a seizure. He lost money both days having to pay for transportation...
Since yesterday's seizure at work was especially bad because he couldn't breathe and was apparently gasping for air while convulsing, he went to Urgent Care.
They told him to establish with a doctor - their next appt is over a MONTH away. He had a massive seizure while waiting at the clinic and they told him he could end up with a "brain ulcer". He said he explained to them 3 times about FND vs. epilepsy then gave up.
If he keeps having seizures this frequently, he needs to go back on disability and move home. They told him an ER doctor would have to do the paperwork because there's a backlog for Medicaid appointments. I already know an ER doc won't do that. So, yet another potential cluster...
The neuro at the LPA conference told him that they think an antidepressant or anti-anxiety med would slow the seizure activity, and it's 9 MONTHS until he can see a psychiatrist for an RX. That's on an "urgent" referral. Lord.
On SSI his income would be $900 a month plus Medicaid if he can even get it approved. The wait for a "disabled apartment" is over 5 YEARS. And, you have to get on the list in the county you live. There's no way we can afford for him to stay where he is on that income and wait it out.
At this point, I don't really know what we will do. If he has to move home, then my overall plans change to needing to move somewhere in the country where he can live around public transportation and other things to do with his time, and yet where I can afford.
This is so incredibly frustrating.
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finnime
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Post by finnime on Jul 13, 2019 9:04:45 GMT -5
I'm so sorry to read this, @rockhounder. I'd hoped that the remission would just continue.
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Post by Deleted on Jul 13, 2019 9:36:07 GMT -5
So is this all because of being on Medicaid that he can't get appointments? That totally sucks.
Did you have a location you were planning on moving?
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countrygirl2
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Post by countrygirl2 on Jul 13, 2019 9:38:44 GMT -5
I have never had a problem with getting docs or appointments for DD on mediciad in Texas or Indiana, where do you live?
But here there is a wait on disabled housing too, they just built 40 units for elderly and disabled in our small town nearby, they are all full already. And we have 2 senior high rises for seniors and disabled, I think there is less of a waiting list on those, and 1 further out of town. We also have some low income housing and yet a terrible rental house shortage.
Sometimes we have to go to Indi or Evansville, so far not to often. In the nearby city I find most of the people we need and Indi has specialist. We didn't have a problem getting on Medicaid here when we moved I was very very surprised at that. But maybe because she was on it already and was considered disabled before we moved.
Texas is out, down there when we left in Houston and north the waiting lists for services was 20 years. They say New York has excellent services but I don't know. One of DIL's friends is a special ed teacher and says they have a lot, but general statements I don't put a lot of credibility in.
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Post by Deleted on Jul 13, 2019 9:39:23 GMT -5
I'm so sorry to read this, @rockhounder . I'd hoped that the remission would just continue. Thanks. It's so frustrating and scary. DS is freaking out because he said this time the seizures are more aggressive and worse. He's had issues breathing before, but he said this time it was like his body forgot how to breathe and he couldn't move to make it. When he could move again he was gasping for air and his heart was beating really hard. This shit scares the crap out of me. I still really fear something is seriously wrong and one day he will stop breathing and it will kill him...
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Post by Deleted on Jul 13, 2019 9:49:05 GMT -5
So is this all because of being on Medicaid that he can't get appointments? That totally sucks.
Did you have a location you were planning on moving?
Yes, due to Medicaid. There are more people on it in CA than doctors to see them. Typically, each county has one group of providers accepting new patients and the waits are long. He has to establish with a new clinic where he moved to, and the only clinic taking new patients has huge waits. Same for psych. The only 2 alternatives are the Medicaid urgent care he went to yesterday or the ER. He's supposed to move to BC/BS via the affordable care due to making $80 too much a month for Medicaid, but that will have some serious consequences if he ends up needing to see anyone out of network or if ER calls someone to see him who is out of network. It also means all things like MRI's will come with a lot of OOP costs. He was in ER 6 times in the last two months due to the kidney stone that was stuck and causing him a lot of pain. His OOP costs for those visits alone would be about $200 each visit. He just doesn't make enough money to keep paying that. After rent, transportation, and food he has like $100 a month for living on. Right now we are in the middle of - does he move home and keep Medicaid to protect him financially against potential huge OOP costs, or Switch to BC/BS where he might have a better chance of seeing providers in a reasonable time, but could end up with massive bills if the seizures get worse or something else is wrong. And, if he loses his job, he wouldn't have the resources to pay for the premiums or OOP costs. This is one of those situations where there just aren't any great answers.
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Tennesseer
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Post by Tennesseer on Jul 13, 2019 9:51:55 GMT -5
Sorry to read this, rockhounder.
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Post by Deleted on Jul 13, 2019 9:52:16 GMT -5
I have never had a problem with getting docs or appointments for DD on mediciad in Texas or Indiana, where do you live? California, where we have massive Medicaid population and few providers who take it.
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Post by Deleted on Jul 13, 2019 10:11:56 GMT -5
I have never had a problem with getting docs or appointments for DD on mediciad in Texas or Indiana, where do you live? California, where we have massive Medicaid population and few providers who take it. I live near the Mayo Clinic in MN and have not heard of issues like that and our cost of living is pretty low here. If you're looking to move anyhow, I'd seriously consider taking DS with and relocating to be near a place like Mayo...or something similar.
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Ava
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Post by Ava on Jul 13, 2019 10:15:20 GMT -5
I've been following the story of your son. So sorry to hear about the seizures coming back.
Like other posters have said, I would consider relocating to another state with your son, if possible.
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Anne_in_VA
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Post by Anne_in_VA on Jul 13, 2019 10:19:12 GMT -5
I’m so sorry to hear about your son and his reoccurring issues. Hopefully you can get this resolved.
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giramomma
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Post by giramomma on Jul 13, 2019 14:34:13 GMT -5
I'm sorry Rock. Do you have any women's shelters around?
Follow me for a sec here: women shelters can plug a women with little money into resources, like lawyers and what not who are willing to work with folks who don't have resources. I would get a hold of that list and see if your son can be seen by someone sooner. Have you also called around to the therapists to see if they will accept payments, offer sliding fees for therapy? When I was in school, I saw a therapist and paid out of pocket for it, as I didn't want my parents' health insurance involved. At that point, I was supporting myself making 10K a year. I set up a payment plan on what I could afford.
What about a care card? I got one and used it to help space out costs when I had my dental issues.
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countrygirl2
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Post by countrygirl2 on Jul 13, 2019 14:48:56 GMT -5
Believe me we have massive numbers of people on Medicaid in Indiana too, but we have still been ok. But I know nothing about the system where you are. Since the cost of living is so high there I can understand so many being on it.
Our cost of living is less but in rural areas like we live good paying jobs are hard to come by. Likely better around the cities.
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GRG a/k/a goldenrulegirl
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Post by GRG a/k/a goldenrulegirl on Jul 14, 2019 10:53:54 GMT -5
I’m sorry. You’re right, no easy answers. Your son is in that population that is neither served by commercial insurance nor Medicaid because he is on the cusp. For now, I would have him grab the BC/BS and get into see someone ASAP so that he can try the meds. Of course, neither you nor I wants him to incur significant medical debt, but if he ends up in an out-of-network ER, that hospital will have to work with him for payment or write it off — they can’t get blood from a stone. Good medical care is a basic human right. Your son is one of the WORKING poor. He is entitled to medical care. Since there is a possibility that meds could help him, have him take the BC/BS NOW and get him the meds ASAP. Then deal with whatever happens next because, either way, something’s going to happen — either a solution or another horrific seizure.
Hugs to you both.
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Works4me
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Post by Works4me on Jul 30, 2019 13:14:39 GMT -5
Thinking about your son - wondering how you all are doing.
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Post by Deleted on Jul 31, 2019 9:12:53 GMT -5
Thinking about your son - wondering how you all are doing. I'd love to be able to say the stone passed and his seizures have stopped. But, nope. He's continuing to have blood in his urine and a lot of pain at least a couple days a week and has been getting sent home from work 2-3 days each week for seizures. His work cut his hours to 20. So, the days he does get to work, he's only getting paid for 4 hours, with $10 of that having to pay for his commute... His last trip to the ER (last week) the urologist once again refused to come to the area to see him and won't see him in clinic because he doesn't take Medicaid. They told him unless he gets a kidney infection he has no choice but to keep waiting for the stone to pass on its own. If he develops a complete blockage or infection, then they can force the urologist to come to the hospital. Craziness... Last week he started losing the feeling and ability to move the muscles around his face that control smiling, whistling, etc... We contacted UCSF and the doc said it's probably FND and if he gets treatment it will stop. You know, the magic therapy that he's had for the last year that's done nothing... Argh. He has a phone consult with UCSF in a few weeks and the doc there is writing him a letter to give to his new doc in a few weeks telling them what he is diagnosed with and the psych medication the epileptologist believes would be best to try. At this point, we are stuck in the waiting zone. Waiting to see when/if the stone passes if that calms down the seizures. Waiting for his first doc appt to see if the new doc will help by prescribing the meds. And, waiting to see if that gives him the ability to work more or not. We have an agreement to reevaluate his situation at the end of next month. For now, I'm helping to financially support him. I want to list my house in March, so hopefully by then we will have more answers and I can make a more informed decision on where to move. My other son and his GF are going to Klamath Falls, OR where she got a job. That might be an option because I can afford a house there and it's closer to the areas I want to spend time in. And, it's big enough to have Uber and the ability for my other DS to get around if he needed to live with me. On a positive note, DS is coming up here to visit in a week or two and hasn't been home since we moved last year, so he's pretty excited about that. And, so am I!
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Works4me
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Post by Works4me on Aug 2, 2019 13:42:44 GMT -5
Damn - was hoping for better news. It does sound like you have a good plan for the future. Please keep us updated as we care.
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Post by busymom on Aug 2, 2019 14:15:00 GMT -5
Good grief! We need to get you out of Cali. (But, I hear Nevada isn't any better.) Maybe it's time to check online for states with better health care...
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Post by Deleted on Aug 3, 2019 9:45:55 GMT -5
Damn - was hoping for better news. It does sound like you have a good plan for the future. Please keep us updated as we care. Thanks. I often feel like no one actually does care. It's frustrating as hell. DS had another seizure this week at work and one day with a lot of pain. He worked 16 hours total for the week. We asked the UCSF doc to write him a note for the new doc. It came yesterday and mostly mentions he needs "qualified CBT/therapy" from someone "experienced with FND". Helpful, not. It also suggested either an SSRI or SNRI but didn't mention which ones. Argh. It appears DS will continue to have flareups of the seizures. We keep hoping they will subside and he can find a better job and get through a probation period on said job before they startup again. Perhaps wishful thinking.
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Post by Deleted on Aug 3, 2019 9:51:16 GMT -5
Good grief! We need to get you out of Cali. (But, I hear Nevada isn't any better.) Maybe it's time to check online for states with better health care... Oregon is likely where we will both end up at some point. Lack of health care and a serious shortage of mental health providers in CA is one of the reasons this state is loaded with homeless and drug addicts. That and all the 31.5 hour "full-time" min wage jobs with no benefits. Where I was staying in Chico there were hundreds of homeless everywhere. They move from park to park, sleep in the street medians, etc... It's insanity. Governor Newplan signed a law so illegals will be added into the Medicaid system. People already can't get appointments. I am still calling every day and can't see a dentist. I've been calling now for like 2 months every.single.day. I mostly opt out of the healthcare system, but DS doesn't have any choice and his care has been complete shit for the kidney stone. If he were still a minor I would raise hell. His father died from complications of ESRD and getting a kidney infection can damage a kidney he very well may need later in life. It's infuriating.
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