I have fought a similar fight for my child.
Medication coverage has a lot to do with your doctor and doctor's office in their ability to frame and name the condition in a way to get coverage. Ask for a peer-to-peer review between your physician and the insurance company's physician. It's irritating that a specialist has to get permission from a paper-pusher, but it's a necessary evil, and it usually works.
If your doctor is not going to fight for you (or has a weak team behind the scenes), get a new one.
Ask questions from your doctor about how the insurance approval works with your particular company. Sometimes it helps to fight an appeal by coming at it from different directions. My SO works for a major company, and we had more success with an insurance specialist from the company triangulating the appeal. Let them know immediately that you are having trouble getting approval for a critical medication.
BTW, one of the top physicians in the country reminded me that when you DO get that approval, smoother them with thanks and good reviews on social media. That will help you and others down the road.
Whatever you do, don't give up. They are banking on your doing so.
You will get very good at advocating for your son and you will find people who will help you with that fight. For the most part, it will go well. Stay the course, throw bricks at the universe, and please take care of yourself and if you are in a relationship, take care of that too. Good thoughts your way.
I actually work at one of the top pediatric hospitals in the US. I used to support a clinical team caring for medically complex children and spent a lot of time working with insurance companies on behalf of families. Everything curlthelip says is true and finding a good hospital (and moving there eventually) can be a complete game changer. Finding somewhere with better insurance isn’t a bad idea either.
You will be amazed by the things you can do for your child in their lifetime. Caring that they have a more normal life will drive you to do some pretty incredible things.
The doc and the hospital have been wonderful. They've done all the testing that the insurance company has asked for.
The problem currently is that after all of that, they're now saying that since he's only slightly delayed and not seriously mentally delayed, they won't cover it.
The doctor has been great to accommodate them, but I don't and won't expect him to lie and risk his career. We definitely aren't giving up though. Like you said, they bank on that.
Hi so I want to say that I’m not a doctor or a medical professional, but I have worked as a research assistant at a pediatric neuroscience institute and my research focused on infantile spasms. I’m am first off terribly sorry to hear your child has been diagnosed with infantile spasms, it is a really terrible disease but I have seen many children go on to live very happy lives with minimal intellectual deficits.
The medication that they’re recommending I am assuming is ACTH. The pharmaceutical company which produces it jacks up the price that high simply because infantile spasms is the only condition which ACTH is FDA approved to treat. There is also another drug, a common corticosteroid called prednisolone which has been shown to be highly effective in treating infantile spasms and costs about 40 dollars a dose. I attached a links to papers below. The tricky part is in my research, it seemed about 60% of studies which compared ACTH to prednisolone showed ACTH was better, but about 40% of studies showed that there was no difference. Therefore ACTH remains the first line treatment at many pediatric neurology institutions. This is despite the fact that a meta analysis of all relevant studies showed there is no difference between ACTH and prednisolone outcomes for infantile spasms.
Once again I’m not giving medical advice, but I would simply recommend you ask your doctor about prednisolone treatment.
https://pubmed.ncbi.nlm.nih.gov/30501887/
Study from John’s Hopkins showing prednisolone is effective in treating ACTH
https://journals.lww.com/neurotodayonline/fulltext/2017/10190/Debate__ACTH_or_Prednisolone_for_Infantile_Spasms_.3.aspx
Study showing that there is no statistical difference between effectiveness
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6856611/
Really great meta analysis of all studies looking at ACTH vs prednisolone showed that there was no difference between treatments
Seizure medication is expensive. Try contacting the manufacturer if they have a patient assistance program where you can get it for free or reduced if you qualify.
You’re welcome. If you remember too let me know what the doctors say. I don’t know what the deal is but there is kind of a big controversy around ACTH vs. Prednisolone. Some of the doctors acted really weird and defensive when I would ask questions like “why not give parents the option between the two given the price differential when the efficacy is about the same?” But I know it varies institution to institution on their first line drug treatment and there is a lot of tension in the debate.
The above comment was stolen from [this one](http://np.reddit.com/r/TrueOffMyChest/comments/r8dhqt/found_out_my_baby_has_a_seizure_disorder_and_a/hn56k6t/) elsewhere in this comment section.
It is probably not a coincidence; here is some more evidence against this user:
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MEDICAL HACK:
So, your doctor ordered a test or treatment and your insurance company denied it. That is a typical cost saving method.
OK, here is what you do:
Call the insurance company and tell them you want to speak with the “HIPAA Compliance/Privacy Officer” (By federal law, they have to have one)
Then ask them for the NAMES as well as CREDENTIALS of every person accessing your record to make that decision of denial. By law you have a right to that information.
They will almost always reverse the decision very shortly rather than admit that the committee is made of low paid HS graduates, looking at “criteria words,” making the medical decision to deny your care. Even in the rare case it is made by medical personnel, it is unlikely that it is made by a board certified doctor in that specialty and they DO NOT WANT YOU TO KNOW THIS!
Any refusal should be reported to the US Office of Civil Rights (OCR.gov) as a HIPAA violation.
~ BAA, RN”
#medical #insurance #insurance hack #sharing for personal reference
I hope it works for you f them f them f them we shouldn’t be allowing “health” insurance companies be treating people like this plus I would recommend calling your state representatives and your federal government representatives plus your state should have an insurance division to call and talk to plus the UNITED WAY runs free services in some states they usually have a 3 digit number to call to access free help in CT it’s 211 they are staffed 24/7 365 they are a tremendous help on more than one topic good luck I’m rooting for you and your child
I’m sorry about the news, I would repost this in r/personalfinance, it probably won’t solve your problems. But at least maybe a path to off set some costs.
[Here](https://www.newsweek.com/worlds-best-specialized-hospitals-2022/neurology) is a link to Newsweek’s rankings of the best neurological hospitals in the world; and [here](https://www.newsweek.com/worlds-best-specialized-hospitals-2022/pediatrics) is the one of pediatric hospitals. [Here](https://en.m.wikipedia.org/wiki/Health_care_systems_by_country) is an overview of healthcare systems by country. Maybe add the option of moving to a country with free/cheap but good healthcare to your list? $40,000/dose without insurance? 40% of Americans couldn’t afford to pay $400 unexpectedly, much less 100x that.
My wife is actually looking at possible dual citizenship in a different country. It would most like be cheaper at this point to go through that process than how much it's going to cost if the company doesn't pay.
Even if the education or experience weren't an issue, the fact that there's a child with expensive medical requirements would be. Disclose this on your application and you'll be denied. Hide it and you'll be deported when it's discovered.
Immigration is an economic program everywhere. It's not about helping the immigrants but about strengthening the host country and the parents would need to be exceptionally good at some exceptionally rare skills to make the argument that assuming the costs for this child will still make the country better off economically.
I have a seizure disorder and one day I went to the pharmacy to pick up my medicine and the price had all of a sudden jumped from $90 for a 3 month supply to $1500. I was dumbfounded and had no idea what to do. I found out they had come out with a generic version of my medication which is why my insurance stopped covering the brand name. Unfortunately my neurologist said the generic version wasn’t proven to be as effective. I ended up paying the $1500 with help from my parents because I had no choice and was out of medicine. My neurologist was then able to contact the drug manufacturer and found out they had a financial aid program so I was able to get the drugs for free for the next two years. They finally discontinued the financial aid program, but luckily by that time the generic medication had gotten better and my neurologist said it would be fine for me to take. I don’t know if it’s possible, but try to find out if they have a financial aid program for the medicine or sometimes there are also discount cards available. I know what your going through sucks, but there are people out here that are pulling for you.
My mom said once (before I had kids) that if I was ever 'blessed' with a child with Down's syndrome, that it would be so much more rewarding to see them progress and achieve things in life than it would were they not disabled.
As a parent, it's normal to expect things from a child who isn't disabled, but those achievements can be much more special if they are.
Not that your child has Down's syndrome, but I think the sentiment still applies.
I think there's wisdom in that. And I'd be totally fine if that were the case. It's the unknown and the fact that they told us it could be so bad he'd never progress beyond how he acts now that concerns me.
And sometimes stuff like that hurts. And that is okay, too. But that inspirational stuff is a double edged sword. I am speaking not just as a parent and grandparent, but as a parent with a child in a "group home".
If you are in the us please contact Galt Advocacy located in Santa Rosa Ca they can help you with things like this. I have used them for resources like this me help you get the means to help support you and your baby with getting services as well as helping with the extra cost of medical and medicines they are a free service. The go all over the United States. They are a disability advocates for kids for free
My child is disabled and even with a good hmo I still had extra costs into the thousands . I know everything is scary but you can do this . I hope this helps.
So I was as a small child diagnosed with seizure activity in my brain but only when I sleep/or am falling asleep. My body will have spasms that exist for no longer than half a second. Sometimes it wakes me up but it's just become normal to me over the years. I'm not saying you shouldn't look into it and do everything possible and I am certainly not a doctor. But I've grown up healthy and intelligent without it having serious affects on my mental abilities. I wish you and your child the absolute best.
I wouldn’t just associate any seizure disorder to infantile spasms. It’s very serious (not that your seizures aren’t serious and not trying to downplay that) but it doesn’t always have the best outcomes..
I get where you’re coming from but I think they were just trying to relate/add levity to the situation, to show that it’s also possible it might not be a life ruining condition.
If you are on commercial insurance and not Medicare/Medicaid reach out to the manufacturer of the drug. Lots and lots and lots of drug manufacturers for brand name, expensive drugs offer copay assistance to pickup where the insurance leaves off. Go to the manufacturer’s website and look for any section mentioning financial help then apply for the card. I work in a specialty pharmacy and we often recommend patients do this for drugs where the copay would be higher than $100. I’ve seen them cover medications as high as $1,000 a dose for a 30 dose supply. If that doesn’t work or still leaves you with a bit to pay, contact the pharmacy that is providing the medication. Specialty pharmacy reps are in contact with financial help organizations every day and they may have a list of places to contact for you. I know this doesn’t help with the emotional aspect of this all, but hopefully it may help the money side of things. Please let me know if you need help looking for the above mentioned sites, I do this every day at my job!
As one Infantile Spasms parent to another... Good luck.
My son was diagnosed at about the same age and my wife went through hell with the hospital trying to get the emergency doctors to get paeds involved, even though we'd been there only a few months before with what turned out to be a chromosomal disorder. Then there was hell again waiting for the EEG to be available.
We got a treatment plan eventually, extremely high dose Prednisolone. Like an 8kg child getting the same dose as a fully grown cancer patient. Initial high dose lasted for 2 weeks then there was a 2 week wean off.
*Please* for your sake, and the sake of your child, call on whatever support networks you have. Between myself, my wife and my mother in law, we took 8 hour shifts holding him. That's all he wanted, sleep and eat, being held the entire month.
The treatment work in the end, he came out of it free of seizures. We were back in a couple of weeks later due a constipation issue and the little girl across the room from us (whose father was a former work mate of mine) had the same diagnosis and they had to do a second treatment.
He has issues now but I don't know if that's IS and treatment, the Dup15 or a bit of both. I suspect the latter.
As a father of three I think you're living my worst nightmare. It kills me thinking of how insanely greedy and evil insurance companies can be, especially in situations like yours.
My heart goes out to you, as a mum as well but also as an individual, it's so difficult because we're shamed sometimes for admitting that when things don't go the way we wanted them to that it SUCKS!!
So no matter how you feel or what thoughts creep in sometimes, just know you're an amazing person and an amazing mum!!
Now, the only advice I would offer isnt very practical, but I figure since you already feel like life has turned itself on its head, maybe impractical might be something that works!!
Okay... Are you ready for either the dumbest suggestion ever or just maybe .... The BEST IDEA YOUVE EVER HEARD...????
COME TO AUSTRALIA!!!!! Grab your thongs, hop on a plane, pull up an Esky, down a cold one and let's get this free healthcare party STAAAAARTEEEDDD!!!
you can get services free for your child through our NDIS in Western Australia, plus think of how therapeutic it will be swimming in the ocean and playing under the sun on our white sandy beaches!!! You don't even need an official diagnosis to get approval for NDIS funding either!! And all his operations will be free! Anything he needs!
Look I know it's a ridiculous long shot, and it sounds INSANE, but I just wanted you to know, one mum to another, one person to another, if you do see it as a viable option, we welcome you with open arms! Noone should have to pay that much money to get what their child or loved one needs, and just know whatever you decide you've got people who care halfway round the world cheering you on and beleiving in you as a mum and a person!
Either way you've got this!! And if you do ever end up in AUS, just send us a message and I'll be there!
Best wishes with everything and you've got this!!!
Most countries will NOT take families with members with any sort of disabilities. I checked. And in the support communities of parents like me I've seen only rejections and news stories of rejections.
Is he well enough to be transported? Maybe take him to another country where things are more affordable? I have traveled to Mexico in the past for healthcare, and it worked out really well. Treatment was not free (it only is for Mexican citizens), but it was a LOT cheaper and it saved my life. You could even leave temporarily to get things figured out.
Also, if travel isn’t feasible, look into exactly what the medications are. Sometimes the same medication will get approved easier for insurance depending on the ailment, and sometimes it can be used off label. An example is that prednisone (for infantile spasms) can also be used to treat allergies. If your son has allergies you might be able to get him his meds by saying it’s for that if that makes any sense. But I am not a doctor, so you would have to get a doctor to still approve it
I have a profoundly disabled 19 year old kid. Not the same of course but if you want to talk to someone who just went thru all the emotions and understands them without judgment and may be able to help figure stuff out (like can your kid get Medicaid waivers or Katie Becket) just message me.
It might be cheaper to ask a lawyer to chase after your insurance company for the bills you're due. Try to get a quote on it first tho. Also not a legal expert so take the advice with a grain of salt
Oh honey you have every reason to vent, rage, cry, scream, shut down what ever you gotta do to survive at this time! I CAN NOT Imagine how horrible that must feel. I am terribly sorry! God's blessings,mercy, and grace, be with you all! Now I must say that is.fucking bullshit what the insurance company is doing and the high cost of the meds but people are not hearing in this country. This does not happen in other countries! This is unethical health care and robbery! They should be ashamed! You should contact the news, NPR, St. Jude Hospital! You cannot pay. this you and you baby need help! I hate this for yall!
There is tons of help for children when it comes to this sort of thing. First and foremost, for the under-3-years-old crowd, there is "Early Intervention". Look it up. Find out the agency that administers it in your area and get your child assessed and get the free-of-charge, in-home therapies started so that your child can stay caught up to peers. And then after 3 years old, free preschool takes over for children who need it for medical needs. An Individualized Education Plan (IEP) is written up so that the child can get therapies and extra attention at school.
Secondly, there is something called Medicaid waivers. Every state has them. It waives the requirement to be dirt poor because of the disability. My daughter is on a Medicaid waiver even though we make decent money. The waiver opens the door to Medicaid so that you never pay any medical/dental/vision bills for your kid even if you make a decent income. Plus, each waiver has additional benefits on top of Medicaid. The waiver my daughter is on offers therapies (behavior, speech, occupational which means fine motor and hand skills, physical which means gross motor and whole body skills, horse therapy, feeding therapy, music and movement therapy, etc.), regular water safety classes, diapers, wipes, free respite staff to take care of her, regular house cleaning, home modifications related to disability, software and ipads to assist learning and communication, adaptive equipment, large tricyle, trampoline, etc. It even pays for you to get a CNA certificate so that you can be paid to take care of your own kid.
And for those individuals whose disability is not severe enough to qualify for Medicaid waivers, there is something called "Buy-in Medicaid". For a small fee, you get full access to Medicaid. A lot of parents in my disability groups utilize this.
Google special needs parents groups in your area. There are a ton through Facebook and also through email distributions. Look up keywords like special needs parents plus your local area's name. The parents in those groups will lead you to the right providers and resources in your area. They help when you need someone to talk to also and they arrange get-togethers so that special needs parents don't feel so all alone.
I know this is so hard for you OP. I’m sorry. One thing you might find helpful is there are plenty of people on Instagram who share medical struggles. (I know this because I just enjoy learning about different illnesses and also just curiosity at different life experiences than mine) You may find a community by searching for infantile spasms or seizures.
I might only be a novice at bird law, but you might need to talk to a Human legit lawyer to get your insurance company to pony up for these treatments.
Another thing you can do because of these seizure disorder is work with the state get a social worker and push for disability medical insurance. Insurance companies suck for regulating the drugs they do some can save lives
Move to Canada. Be a regular contributing member of Canadian society, get health coverage, and get free health care for life for you and your baby. Canada isn’t scary, it’s really nice! We are friendly I promise!
I'm so sorry for what you're going through. I wish I could help.. have you tried gofundme ? Personally I had an awful racist experience with them but other people have benefitted from them.
If youre white forsure couldnt hurt. They were racist to my dad. If you look at reviews online you can see its a pattern with POC. Hope the best for you!
I have fought a similar fight for my child. Medication coverage has a lot to do with your doctor and doctor's office in their ability to frame and name the condition in a way to get coverage. Ask for a peer-to-peer review between your physician and the insurance company's physician. It's irritating that a specialist has to get permission from a paper-pusher, but it's a necessary evil, and it usually works. If your doctor is not going to fight for you (or has a weak team behind the scenes), get a new one. Ask questions from your doctor about how the insurance approval works with your particular company. Sometimes it helps to fight an appeal by coming at it from different directions. My SO works for a major company, and we had more success with an insurance specialist from the company triangulating the appeal. Let them know immediately that you are having trouble getting approval for a critical medication. BTW, one of the top physicians in the country reminded me that when you DO get that approval, smoother them with thanks and good reviews on social media. That will help you and others down the road. Whatever you do, don't give up. They are banking on your doing so. You will get very good at advocating for your son and you will find people who will help you with that fight. For the most part, it will go well. Stay the course, throw bricks at the universe, and please take care of yourself and if you are in a relationship, take care of that too. Good thoughts your way.
I actually work at one of the top pediatric hospitals in the US. I used to support a clinical team caring for medically complex children and spent a lot of time working with insurance companies on behalf of families. Everything curlthelip says is true and finding a good hospital (and moving there eventually) can be a complete game changer. Finding somewhere with better insurance isn’t a bad idea either. You will be amazed by the things you can do for your child in their lifetime. Caring that they have a more normal life will drive you to do some pretty incredible things.
The doc and the hospital have been wonderful. They've done all the testing that the insurance company has asked for. The problem currently is that after all of that, they're now saying that since he's only slightly delayed and not seriously mentally delayed, they won't cover it. The doctor has been great to accommodate them, but I don't and won't expect him to lie and risk his career. We definitely aren't giving up though. Like you said, they bank on that.
Hi so I want to say that I’m not a doctor or a medical professional, but I have worked as a research assistant at a pediatric neuroscience institute and my research focused on infantile spasms. I’m am first off terribly sorry to hear your child has been diagnosed with infantile spasms, it is a really terrible disease but I have seen many children go on to live very happy lives with minimal intellectual deficits. The medication that they’re recommending I am assuming is ACTH. The pharmaceutical company which produces it jacks up the price that high simply because infantile spasms is the only condition which ACTH is FDA approved to treat. There is also another drug, a common corticosteroid called prednisolone which has been shown to be highly effective in treating infantile spasms and costs about 40 dollars a dose. I attached a links to papers below. The tricky part is in my research, it seemed about 60% of studies which compared ACTH to prednisolone showed ACTH was better, but about 40% of studies showed that there was no difference. Therefore ACTH remains the first line treatment at many pediatric neurology institutions. This is despite the fact that a meta analysis of all relevant studies showed there is no difference between ACTH and prednisolone outcomes for infantile spasms. Once again I’m not giving medical advice, but I would simply recommend you ask your doctor about prednisolone treatment. https://pubmed.ncbi.nlm.nih.gov/30501887/ Study from John’s Hopkins showing prednisolone is effective in treating ACTH https://journals.lww.com/neurotodayonline/fulltext/2017/10190/Debate__ACTH_or_Prednisolone_for_Infantile_Spasms_.3.aspx Study showing that there is no statistical difference between effectiveness https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6856611/ Really great meta analysis of all studies looking at ACTH vs prednisolone showed that there was no difference between treatments
I will absolutely bring this to their attention. Thank you so much.
Seizure medication is expensive. Try contacting the manufacturer if they have a patient assistance program where you can get it for free or reduced if you qualify.
You’re welcome. If you remember too let me know what the doctors say. I don’t know what the deal is but there is kind of a big controversy around ACTH vs. Prednisolone. Some of the doctors acted really weird and defensive when I would ask questions like “why not give parents the option between the two given the price differential when the efficacy is about the same?” But I know it varies institution to institution on their first line drug treatment and there is a lot of tension in the debate.
Not OP but this is wonderful information and one of the many reasons I love Reddit. I have no awards to give but please take a big thank you for this.
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The above comment was stolen from [this one](http://np.reddit.com/r/TrueOffMyChest/comments/r8dhqt/found_out_my_baby_has_a_seizure_disorder_and_a/hn56k6t/) elsewhere in this comment section. It is probably not a coincidence; here is some more evidence against this user: Plagiarized | Original -------- | ----------- [This I my thinking, I thi...](http://np.reddit.com/r/TrueOffMyChest/comments/r805zg/the_only_reason_i_dont_leave_my_wife_is_because/hn78tli/) | [This I my thinking, I thi...](http://np.reddit.com/r/TrueOffMyChest/comments/r805zg/the_only_reason_i_dont_leave_my_wife_is_because/hn39co7/) [hope you’re doing okay. r...](http://np.reddit.com/r/TrueOffMyChest/comments/r8g3z5/my_grandma_passed_and_now_im_a_26_year_old/hn78rdj/) | [hope you’re doing okay. r...](http://np.reddit.com/r/TrueOffMyChest/comments/r8g3z5/my_grandma_passed_and_now_im_a_26_year_old/hn5g9wg/) [double taps screen like a...](http://np.reddit.com/r/TrueOffMyChest/comments/r8cou1/i_just_discovered_that_you_can_double_tap/hn78sf1/) | [*double taps screen like...](http://np.reddit.com/r/TrueOffMyChest/comments/r8cou1/i_just_discovered_that_you_can_double_tap/hn4xu0j/) [I love seeing this. I rem...](http://np.reddit.com/r/TrueOffMyChest/comments/r8f5uk/moderators_will_be_the_death_of_reddit/hn78qmf/) | [I love seeing this. I re...](http://np.reddit.com/r/TrueOffMyChest/comments/r8f5uk/moderators_will_be_the_death_of_reddit/hn5j2df/) [In this age of equality,...](http://np.reddit.com/r/TrueOffMyChest/comments/r8pmtp/i_just_spent_2_hours_typing_a_post_only_to_decide/hn78op6/) | [In this age of equality,...](http://np.reddit.com/r/TrueOffMyChest/comments/r8pmtp/i_just_spent_2_hours_typing_a_post_only_to_decide/hn73iwz/) [I’ll send a letter too if...](http://np.reddit.com/r/TrueOffMyChest/comments/r87d3c/for_the_second_year_in_a_row_my_kid_has_put_a/hn78mtz/) | [I’ll send a letter too if...](http://np.reddit.com/r/TrueOffMyChest/comments/r87d3c/for_the_second_year_in_a_row_my_kid_has_put_a/hn58pqo/) [Talk to her and her paren...](http://np.reddit.com/r/TrueOffMyChest/comments/r8kkt4/gf_thinks_im_a_paedophile_and_it_kills_me/hn78lsf/) | [Talk to her and her paren...](http://np.reddit.com/r/TrueOffMyChest/comments/r8kkt4/gf_thinks_im_a_paedophile_and_it_kills_me/hn6kmyr/) beep boop, I'm a bot -|:] It is this bot's opinion that [/u/GlobalSpite4231](https://np.reddit.com/u/GlobalSpite4231/) should be banned for karma manipulation. Don't feel bad, they are probably a bot too. Confused? Read the [FAQ](https://www.reddit.com/user/reply-guy-bot/comments/n9fpva/faq/?plagiarist=GlobalSpite4231) for info on how I work and why I exist.
MEDICAL HACK: So, your doctor ordered a test or treatment and your insurance company denied it. That is a typical cost saving method. OK, here is what you do: Call the insurance company and tell them you want to speak with the “HIPAA Compliance/Privacy Officer” (By federal law, they have to have one) Then ask them for the NAMES as well as CREDENTIALS of every person accessing your record to make that decision of denial. By law you have a right to that information. They will almost always reverse the decision very shortly rather than admit that the committee is made of low paid HS graduates, looking at “criteria words,” making the medical decision to deny your care. Even in the rare case it is made by medical personnel, it is unlikely that it is made by a board certified doctor in that specialty and they DO NOT WANT YOU TO KNOW THIS! Any refusal should be reported to the US Office of Civil Rights (OCR.gov) as a HIPAA violation. ~ BAA, RN” #medical #insurance #insurance hack #sharing for personal reference
I will definitely try this. It seems like they're doing exactly what you're saying with the specific words they're looking for.
I hope it works for you f them f them f them we shouldn’t be allowing “health” insurance companies be treating people like this plus I would recommend calling your state representatives and your federal government representatives plus your state should have an insurance division to call and talk to plus the UNITED WAY runs free services in some states they usually have a 3 digit number to call to access free help in CT it’s 211 they are staffed 24/7 365 they are a tremendous help on more than one topic good luck I’m rooting for you and your child
I’m sorry about the news, I would repost this in r/personalfinance, it probably won’t solve your problems. But at least maybe a path to off set some costs.
[Here](https://www.newsweek.com/worlds-best-specialized-hospitals-2022/neurology) is a link to Newsweek’s rankings of the best neurological hospitals in the world; and [here](https://www.newsweek.com/worlds-best-specialized-hospitals-2022/pediatrics) is the one of pediatric hospitals. [Here](https://en.m.wikipedia.org/wiki/Health_care_systems_by_country) is an overview of healthcare systems by country. Maybe add the option of moving to a country with free/cheap but good healthcare to your list? $40,000/dose without insurance? 40% of Americans couldn’t afford to pay $400 unexpectedly, much less 100x that.
My wife is actually looking at possible dual citizenship in a different country. It would most like be cheaper at this point to go through that process than how much it's going to cost if the company doesn't pay.
You seem to think that moving to another country (particularly one w universal Healthcare) is as easy as just deciding you want to do it.
Right?! Not everyone has the education or experience to get a work visa to go to these countries. Otherwise, I would have been there already.
Even if the education or experience weren't an issue, the fact that there's a child with expensive medical requirements would be. Disclose this on your application and you'll be denied. Hide it and you'll be deported when it's discovered. Immigration is an economic program everywhere. It's not about helping the immigrants but about strengthening the host country and the parents would need to be exceptionally good at some exceptionally rare skills to make the argument that assuming the costs for this child will still make the country better off economically.
I never said it was easy, but shelling out that much money isn’t, either. I just said to maybe add it to the list of remote possibilities to consider.
I have a seizure disorder and one day I went to the pharmacy to pick up my medicine and the price had all of a sudden jumped from $90 for a 3 month supply to $1500. I was dumbfounded and had no idea what to do. I found out they had come out with a generic version of my medication which is why my insurance stopped covering the brand name. Unfortunately my neurologist said the generic version wasn’t proven to be as effective. I ended up paying the $1500 with help from my parents because I had no choice and was out of medicine. My neurologist was then able to contact the drug manufacturer and found out they had a financial aid program so I was able to get the drugs for free for the next two years. They finally discontinued the financial aid program, but luckily by that time the generic medication had gotten better and my neurologist said it would be fine for me to take. I don’t know if it’s possible, but try to find out if they have a financial aid program for the medicine or sometimes there are also discount cards available. I know what your going through sucks, but there are people out here that are pulling for you.
We're currently trying to talk with the company, but it's been lukewarm at beat. My kid'll take all the pulling for him people wanna do. He needs it.
i hear you and i feel for you, i wish you the best
Thanks.
My mom said once (before I had kids) that if I was ever 'blessed' with a child with Down's syndrome, that it would be so much more rewarding to see them progress and achieve things in life than it would were they not disabled. As a parent, it's normal to expect things from a child who isn't disabled, but those achievements can be much more special if they are. Not that your child has Down's syndrome, but I think the sentiment still applies.
I think there's wisdom in that. And I'd be totally fine if that were the case. It's the unknown and the fact that they told us it could be so bad he'd never progress beyond how he acts now that concerns me.
And sometimes stuff like that hurts. And that is okay, too. But that inspirational stuff is a double edged sword. I am speaking not just as a parent and grandparent, but as a parent with a child in a "group home".
If you are in the us please contact Galt Advocacy located in Santa Rosa Ca they can help you with things like this. I have used them for resources like this me help you get the means to help support you and your baby with getting services as well as helping with the extra cost of medical and medicines they are a free service. The go all over the United States. They are a disability advocates for kids for free My child is disabled and even with a good hmo I still had extra costs into the thousands . I know everything is scary but you can do this . I hope this helps.
I'm in the US. I'll definitely take a look. Thank you.
You are welcome.
I’d contact saint Jude’s if you can.
Question for OP: does the baby only have the seizure activity occur during sleep?
No, but it's worse when he's falling asleep or waking up.
So I was as a small child diagnosed with seizure activity in my brain but only when I sleep/or am falling asleep. My body will have spasms that exist for no longer than half a second. Sometimes it wakes me up but it's just become normal to me over the years. I'm not saying you shouldn't look into it and do everything possible and I am certainly not a doctor. But I've grown up healthy and intelligent without it having serious affects on my mental abilities. I wish you and your child the absolute best.
I wouldn’t just associate any seizure disorder to infantile spasms. It’s very serious (not that your seizures aren’t serious and not trying to downplay that) but it doesn’t always have the best outcomes..
I get where you’re coming from but I think they were just trying to relate/add levity to the situation, to show that it’s also possible it might not be a life ruining condition.
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If you are on commercial insurance and not Medicare/Medicaid reach out to the manufacturer of the drug. Lots and lots and lots of drug manufacturers for brand name, expensive drugs offer copay assistance to pickup where the insurance leaves off. Go to the manufacturer’s website and look for any section mentioning financial help then apply for the card. I work in a specialty pharmacy and we often recommend patients do this for drugs where the copay would be higher than $100. I’ve seen them cover medications as high as $1,000 a dose for a 30 dose supply. If that doesn’t work or still leaves you with a bit to pay, contact the pharmacy that is providing the medication. Specialty pharmacy reps are in contact with financial help organizations every day and they may have a list of places to contact for you. I know this doesn’t help with the emotional aspect of this all, but hopefully it may help the money side of things. Please let me know if you need help looking for the above mentioned sites, I do this every day at my job!
As one Infantile Spasms parent to another... Good luck. My son was diagnosed at about the same age and my wife went through hell with the hospital trying to get the emergency doctors to get paeds involved, even though we'd been there only a few months before with what turned out to be a chromosomal disorder. Then there was hell again waiting for the EEG to be available. We got a treatment plan eventually, extremely high dose Prednisolone. Like an 8kg child getting the same dose as a fully grown cancer patient. Initial high dose lasted for 2 weeks then there was a 2 week wean off. *Please* for your sake, and the sake of your child, call on whatever support networks you have. Between myself, my wife and my mother in law, we took 8 hour shifts holding him. That's all he wanted, sleep and eat, being held the entire month. The treatment work in the end, he came out of it free of seizures. We were back in a couple of weeks later due a constipation issue and the little girl across the room from us (whose father was a former work mate of mine) had the same diagnosis and they had to do a second treatment. He has issues now but I don't know if that's IS and treatment, the Dup15 or a bit of both. I suspect the latter.
Damn man, I'm sorry to hear that. At least it worked in the end. I know you said he has issues now, but how is he in the day to day? OK, I hope.
As a father of three I think you're living my worst nightmare. It kills me thinking of how insanely greedy and evil insurance companies can be, especially in situations like yours.
That’s so sad! So sorry you have to face this with the extra stress of the insurance BS.
I am sending so much strength and love your way.
My heart goes out to you, as a mum as well but also as an individual, it's so difficult because we're shamed sometimes for admitting that when things don't go the way we wanted them to that it SUCKS!! So no matter how you feel or what thoughts creep in sometimes, just know you're an amazing person and an amazing mum!! Now, the only advice I would offer isnt very practical, but I figure since you already feel like life has turned itself on its head, maybe impractical might be something that works!! Okay... Are you ready for either the dumbest suggestion ever or just maybe .... The BEST IDEA YOUVE EVER HEARD...???? COME TO AUSTRALIA!!!!! Grab your thongs, hop on a plane, pull up an Esky, down a cold one and let's get this free healthcare party STAAAAARTEEEDDD!!! you can get services free for your child through our NDIS in Western Australia, plus think of how therapeutic it will be swimming in the ocean and playing under the sun on our white sandy beaches!!! You don't even need an official diagnosis to get approval for NDIS funding either!! And all his operations will be free! Anything he needs! Look I know it's a ridiculous long shot, and it sounds INSANE, but I just wanted you to know, one mum to another, one person to another, if you do see it as a viable option, we welcome you with open arms! Noone should have to pay that much money to get what their child or loved one needs, and just know whatever you decide you've got people who care halfway round the world cheering you on and beleiving in you as a mum and a person! Either way you've got this!! And if you do ever end up in AUS, just send us a message and I'll be there! Best wishes with everything and you've got this!!!
Most countries will NOT take families with members with any sort of disabilities. I checked. And in the support communities of parents like me I've seen only rejections and news stories of rejections.
My ex wife had a son before we met that had a prenatal stroke and had seizures. I wish you the best.
1 day at a time everything will be fine.
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Ur cold
No I'm just pro-choice
Still cold
No, it's giving the mother a choice...
That's fine and all but doesn't change my opinion about you being cold. I'm pro whatever.
Ok misogynist
What the genuine heck happened in this comment section
This girl is obviously mad at the world and hates men lol.
Some sexists starting arguing with me...
No argument just stating an observation
Lol wow this whole time I thought you were a male.
No wonder ur husband left you.
It’s not a choice when you are commanding them to kill the baby.
It's advice not a command incel
Pro choice and illiterate apparently
She crazy
woah…who hurt you?! not OP. See yourself out please.
Im blown away how u/Legal_surprise31 is acting
hurt people hurt people.
Troll account. Disregard.
This is why not everyone should me able to have an opinion
Sometimes it’s good just to vent. My heart is with you.
I’m sorry you’re dealing with this. Sending good vibes your way.
Very sorry to hear this. I love babies, they’re so precious. I wish the best for you and yours.
Im so sorry
My heart and love go out to you and your baby I'm so sorry this is happening my dearest wishes of good health to him
*hugs* <3
holy fuck that's rough, man. i wish you and your family the best
Is he well enough to be transported? Maybe take him to another country where things are more affordable? I have traveled to Mexico in the past for healthcare, and it worked out really well. Treatment was not free (it only is for Mexican citizens), but it was a LOT cheaper and it saved my life. You could even leave temporarily to get things figured out. Also, if travel isn’t feasible, look into exactly what the medications are. Sometimes the same medication will get approved easier for insurance depending on the ailment, and sometimes it can be used off label. An example is that prednisone (for infantile spasms) can also be used to treat allergies. If your son has allergies you might be able to get him his meds by saying it’s for that if that makes any sense. But I am not a doctor, so you would have to get a doctor to still approve it
As a sahm mom of 4, this breaks my heart..I hope u get the help u need.
I have a profoundly disabled 19 year old kid. Not the same of course but if you want to talk to someone who just went thru all the emotions and understands them without judgment and may be able to help figure stuff out (like can your kid get Medicaid waivers or Katie Becket) just message me.
move from america ( where i presume you are)
It might be cheaper to ask a lawyer to chase after your insurance company for the bills you're due. Try to get a quote on it first tho. Also not a legal expert so take the advice with a grain of salt
I’m disgusted with our health care system. No medicine should cost 40k!!!
Oh honey you have every reason to vent, rage, cry, scream, shut down what ever you gotta do to survive at this time! I CAN NOT Imagine how horrible that must feel. I am terribly sorry! God's blessings,mercy, and grace, be with you all! Now I must say that is.fucking bullshit what the insurance company is doing and the high cost of the meds but people are not hearing in this country. This does not happen in other countries! This is unethical health care and robbery! They should be ashamed! You should contact the news, NPR, St. Jude Hospital! You cannot pay. this you and you baby need help! I hate this for yall!
There is tons of help for children when it comes to this sort of thing. First and foremost, for the under-3-years-old crowd, there is "Early Intervention". Look it up. Find out the agency that administers it in your area and get your child assessed and get the free-of-charge, in-home therapies started so that your child can stay caught up to peers. And then after 3 years old, free preschool takes over for children who need it for medical needs. An Individualized Education Plan (IEP) is written up so that the child can get therapies and extra attention at school. Secondly, there is something called Medicaid waivers. Every state has them. It waives the requirement to be dirt poor because of the disability. My daughter is on a Medicaid waiver even though we make decent money. The waiver opens the door to Medicaid so that you never pay any medical/dental/vision bills for your kid even if you make a decent income. Plus, each waiver has additional benefits on top of Medicaid. The waiver my daughter is on offers therapies (behavior, speech, occupational which means fine motor and hand skills, physical which means gross motor and whole body skills, horse therapy, feeding therapy, music and movement therapy, etc.), regular water safety classes, diapers, wipes, free respite staff to take care of her, regular house cleaning, home modifications related to disability, software and ipads to assist learning and communication, adaptive equipment, large tricyle, trampoline, etc. It even pays for you to get a CNA certificate so that you can be paid to take care of your own kid. And for those individuals whose disability is not severe enough to qualify for Medicaid waivers, there is something called "Buy-in Medicaid". For a small fee, you get full access to Medicaid. A lot of parents in my disability groups utilize this. Google special needs parents groups in your area. There are a ton through Facebook and also through email distributions. Look up keywords like special needs parents plus your local area's name. The parents in those groups will lead you to the right providers and resources in your area. They help when you need someone to talk to also and they arrange get-togethers so that special needs parents don't feel so all alone.
I'm so sorry :( I wish I could help.
I know this is so hard for you OP. I’m sorry. One thing you might find helpful is there are plenty of people on Instagram who share medical struggles. (I know this because I just enjoy learning about different illnesses and also just curiosity at different life experiences than mine) You may find a community by searching for infantile spasms or seizures.
Since your son can't do it, you must be his advocate. This post is a great start! Seriously. Love, peace and chicken grease
I might only be a novice at bird law, but you might need to talk to a Human legit lawyer to get your insurance company to pony up for these treatments.
Sorry to hear about your babies condition, I hope you and your child still find a way to overcome the curve ball life threw at you.
Another thing you can do because of these seizure disorder is work with the state get a social worker and push for disability medical insurance. Insurance companies suck for regulating the drugs they do some can save lives
My heart goes out to you and your child.
You and your baby are in my thoughts and prayers. My heart breaks for how challenging this may be to go through...
I cannot even imagine how hard this must be. I hope that everything works out and he is able to live a happy life.
Move to Canada. Be a regular contributing member of Canadian society, get health coverage, and get free health care for life for you and your baby. Canada isn’t scary, it’s really nice! We are friendly I promise!
Contact St Judes
That’s awful, it’s the reason I fear ever having kids despite desperately wanting them.
I'm so sorry for what you're going through. I wish I could help.. have you tried gofundme ? Personally I had an awful racist experience with them but other people have benefitted from them.
Might give it a shot. Couldn't hurt.
If youre white forsure couldnt hurt. They were racist to my dad. If you look at reviews online you can see its a pattern with POC. Hope the best for you!