Kassiane needs help.


Kassiane, a.k.a. Rett Devil, has been an online friend and advocate for a long time. She is in a lot of trouble at the moment. This video explains it. It’s basically an emergency situation and she needs money for meds to keep her from going into status epilepticus among other things (edited to add: status epilepticus means having seizures back to back without regaining consciousness):

A friend of mine transcribed the video (which I did not make, by the way) as this, for those of us who can’t read that fast:

Kassianne is severely epileptic and has lost her health coverage, due to an act of fraud performed by her former housemate out of spite.

She is running dangerously low on Topamax, Neurontin, and Keppra, without which she will most likely die of status epilepticus.

This is ‘Ask and Tell’, a book to which she contributed a chapter on self-advocacy for autistic children.

Stephen Shore, the editor who compiled the book, has stated that hers is most likely the best chapter in the entire book.

For her contribution she received


And no royalties

And the book is considered groundbreaking!

If you have money to spare, please give to Kassiane for lifesaving medicine and living expenses.

Her Paypal name is kassiane_alexandra at yahoo dot com [edited by me to avoid spam crap]

It’s a much better use of your money than giving it to Autism Speaks or a similar hate group.


You can see some of her previous public speaking at this URL. And you can see her tumbling a few years ago here:

Her paypal address is kassiane_alexandra at yahoo dot com.

Remove the spaces and turn at into @ and dot into . for that.


About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Developmentally disabled, physically and cognitively disabled. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died in 2014 and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

55 responses »

  1. I don’t have a pay pal account. Is there some way I could mail a check? Or, is there someone here (preferably someone who has posted in the comments here from time to time — i.e, someone who I feel I “know” to some extent) who has a pay pal account who could take a check from me and cash it in to Kassiane via pay pal? Preferably someone also known to Amanda to some extent. If I’m going to trust someone to put my money into pay pal on my behalf, I’d want to feel a sense of confidence!

    (If anyone prefers to contact me via private email, follow the link to my web site — my email address is there)

    Amanda so rarely makes such a direct appeal for help I knew it had to be something critical before I looked at the video.


  2. I’m really touched by the situation of Kassianne… but if people helped her pay for hyperbaric treatments instead, after she wouldn’t need anymore of her meds. The best will be to search for a hyperbaric clinic in the city where she lives. Write to me if you want to know more about this therapy and how it helps people with Autism or Epilepsy.

    Best regards,


  3. Thanks for alerting us to Kassianne’s need for help. I have sent a contribution through paypalwhich hopefully she can access quickly as this all sounds like an emergency…You may give me e-mail address to Andrea at your discretion and I can help with her getting money to Kassiane and forward her back the paypal receipt…I also forwarded you an e-mail address of an organization
    that can help get free medication for peopple in emergencies although I don’t know anything more about the organization and imagine it takes a bit of time to arrange…Hopefully you can get that address to Kassiane…I hope she knows people we
    are all hoping for the best for her and sending
    positive thoughts her way…

    Holey Crap on the hyperbaric chamber…You’ll have to mention that one to your neurologist….and ask
    why he hasn’t suggested it for you….;)

  4. For the record (and yeah, I’m way too fried to be commenting much)–HYPERVENTILATION TRIGGERS SEIZURES. Like, has sent me into status. Is commonly used in EEG situations. Ain’t a cure, and ain’t in my budget.

    I am totally floored and awed by…everything…Amanda, thank you. Everyone responding, thank you…I owe a real thank you but need, like, to not be on half meds and seizing so much first…the real autistic community rocks…

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  6. Back again after much dithering. I’m with Andrea = I need something other than paypal which isn’t activated and takes 14 days to gain approval [or something or other.

    I think it might be helpful to those who are not American, if you could explain the nightmare of the American medical insurance system [good luck on that one!]

    I think it will be very hard for non-american’s to appreciate how easy it is for people to fall between the cracks. I don’t know the figures [not my field] but something like [the majority] of under 30’s are uninsured [because it’s too expensive unless it comes with the job]

    It’s hard to explain the impact of medical insurance / medical hic-cups to anyone who isn’t a ‘native.’ It is completely bewildering, bureaucratic and takes a very, very long time.

    I’m sorry this isn’t erudite, but I would like people to understand the very real shortfall here [crevasse] that all too many people fall into. I feel that I am obliged to translate this gap in the system, but it’s too late [night] for me to explain, or try to explain, just how serious it is.

    I would encourage American knowledgeable people to jump in and try and explain the American system of medical insurance to someone who only speaks Swahili.

    Best wishes

  7. p.s. you might also like to explain that this is not 7 pounds fifty for a prescription, but some indefinable [ignore the exchange rate] figure, where quite often a single pill [gelcap?] is some outrageous figure.

    I really think it would help to bring this home if you had a specific ‘price per pill’ and ‘dosage per day’ as not many people [non-americans] can understand this crisis. [ maybe Euros?]

    I don’t think I can over emphasize how this does not translate.

    Very best wishes

  8. Hyperbaric O2 is an absolutely certain way to trigger siezures, even in people who have never had a siezure in their life. Enough O2 at a high enough pressure will trigger a siezure with 100% certainty.

  9. I attended a conference (Kristina Chew’s) where Kassiane was a contributor. She is a terrific person, and I feel terrible that this has happened to her. She is a great advocate for autism. Paypal is extremely easy to use, it’s easy to get an account there.

  10. I’ve donated. I just can’t understand how a major world power like the USA can let someone run the risk of dying because they can’t afford to pay for their medication. It’s obscene :(.

  11. I also sent what I could (Kassiane, my note said I had an autistic daughter. That was me.) I didn’t have health insurance for most of my 20’s, either, despite being a student and then having a job. I was very lucky that I scraped by without it.

  12. Ok, I looked up some prices of this medication. Now, these are from Canadian on-line pharmacies. You have to remember that Canadian prices are far cheaper than US prices (our gov’t negotiates prices for our drug formularies)

  13. Oops…pressed enter early!
    Keep in mind I don’t know Kassiane’s doses, so I am giving what I have found in the product monographs as maximum daily doses. Many times people are prescribed more, if their particular symptoms warrant it:

    Ok, these are US Dollar prices from Canadian pharmacies:

    500mg tablet – 1 tablet = $2.98 US Dollars
    Maximum dose of this drug is around 4000mg or 8 tabs
    Range: $2.98 to $23.84 per day
    Month: $89.04 to $715.20

    100mg tablet – 1 tablet = $4.15 USD
    Max dose = 400mg
    Range= $4.15 to $16.60 per day
    Per month = 124.50 to $498.00

    400mg capsule = 1 tablet = $2.21 USD
    Dosing ranges from 900 to 1800 mg per day, but I have seen much higher as a pharmacy technician so I will use 1 capsule and 5 capsules as my minimum and maximum here
    Range = $2.21 to $11.05 per day
    Per month $66.30 to $331.50

    So monthly I am getting a total
    Minimum: $279.84 USD
    Maximum: $1544.77

    Like I said, these are from Canadian on-line companies serving the USA. The medications could cost much, much more. I have a friend that comes here for her meds and it costs her about 1/3.

    Just wanting to give some numbers to put this into perspective.

  14. i’m from here and i don’t even understand it. just know how ‘lucky’ i am to have insurance, as i was a p/t employee for over 10 yrs and had none. even when you have insurance there are sometimes fairly huge (especially when you are young) deductibles which is the money you have to pay before they pay anything. which is usually more than i ever use in a year anyway. but that is only because i got the break of not having any conditions that necessitate going to the doctor more than once a year.

  15. Whoa! HBOT is an unapproved treatment for anything BUT certain wounds and ‘the bends’. PubMed had paperwork to do a study on HBOT therapy for autism but due to ethical and safety concerns I believe that study was dropped before it began. Something about the few places that owned real dive tanks not letting children in them.

    Also, no Rhett’s girls should be messing around with HBOT or whatever……….Rhett’s in totally neurological and well documented in origin and etiology. No neurologist worth their license would recommend that.

    My dad took a few dives in the USN HBOT tank as a result of Naval training. He swam thru an entire silo full of water once then had to lay out in the dive tank for many hours. He says that that the HBOT lite (the pressurized bags being touted for autism treatment) are a big rip off because they don’t produce much more pressure that oxygen in a mask. Think about it this way……how many pounds (vs. tons for a for a real dive tank) per square inch (or foot or meter) can plastic take? Not much.

    Also, what are the effects of forcing out free radicals in the bloodstream? Cancer? Nobody knows yet and I think that is not acceptable for children.


  16. in my husband’s country paypal doesn’t “exist” for them, unless they have a US-based credit card, which is next to impossible for most ppl. but for USA people and a few other places, it’s kind of easy.

  17. No, you wouldn’t know. Maybe Kass knows what I am referring to? Could you please see that she gets the message?


  18. *whinney*Donna?

    Email me? I think I do but I’ve moved…so the bank is across the country…the words have to do with a vegetable and a relative?

    (sorry Amanda…cryptic…and this is relatively lucid for lately)…

    Again, everyone, thank you….I so owe a video and a thank you post and stuff…

  19. For those from other countries…It is very expensive and sometimes almost impossible to get insurance in the U.S. If your employer has insurance available then you can buy it through them but if not and you have a pre-existing medical condition such as asthma or high blood pressure then insurance companies do not want to cover you. Insurance if you can buy it through a company is still very expensive…For a couple it can run $700-$800/ per month. You still have to pay a deductable amt. plus a co-payment for every doctor visit and hospitilization…as much as 20% of the bill.Your pills are not free…They can require a co-payment of from $20-$100 an Rx…If you don’thave insurance pills are higher…One of my husband’s without insurance would be $700 for a 3 month supply. Cancer drugs can run much more then that..A hospitilization for an insured person for even a few days runs thousands of dollars… Unfortunately the pharmaceutical companies spend a great deal of money for advertisement in this country driving up the costs…It has been estimated that they spend from 23-31% of their
    costs for advertisements…which is crazy….

    There is little oversite for pharmaceutical companies or insurance companies for setting their prices or deciding who they choose to cover…

    They are in my opinion not that different from the old Chicago mobsters… selling insurance and guaging the prices…I have heard that Germany has a good system…Every citizen gets a voucher and chooses their insurance and their doctors thus keeping a competitive market which causes them to try harder and have a higher quality of care. I believe every citizen should have dental and health care from birth plus care in older age. Big business and profit does not belong in the field of health care…I applaud Michael Moore…

    and hope his film Sicko helps promote a solid non- profit health system in this country…It is long
    overdue as is a completely different approach to mental health…

    Sorry for the rant but this is a subject that really concerns me….

  20. Would it be possible for me to send something via Pay By Check to autistics.org and then have it sent to Kassianne? PayPal does not like my computer. I could send you a note about which check number it is so you would know it was for Kassiane. I will also try Pay Pal once again….

  21. I know the NHS in the UK isn’t wonderful, but I am so grateful for it, especially upon reading what can happen if someone doesn’t have the money to pay for medication or treatment.

  22. Mountain Rose mentions the documentary “Sicko” which describes some of the problems with the US health insurance system — I haven’t seen the movie myself, but my understanding from the bit I’ve read about it is that the main criticisms the “experts” have come up with so far is that he perhaps overidealizes other health care systems a bit, and some experts complain that he left out certain pieces of information or certain dimensions of the overall health care system that they think could have strengthened the documentary. But overall, (or so I’ve read that the experts apparently say) the facts and figures he uses are generally accurate, or at least accurate enough.

    Info on “Sicko”: http://en.wikipedia.org/wiki/Sicko_%28film%29

    In googling around the web, it seems that about 15% (45 million) Americans are uninsured. Which seems about right. Yes, in theory there is insurance specifically for poor people and for retired elderly people. But there are still many who slip through the cracks — who either aren’t eligible for anything or don’t realize they’re eligible.

    With some further googling around, I found this web site that links to a range of articles on the problems confronted by uninsured Americans: http://familiesusa.org/issues/uninsured/about-the-uninsured/

    I don’t know if this would be helpful to Kassiane, but I happened to stumble across a page that has ideas for trying to control the costs of medications (I was actually looking for a page listing prices of anti-seizure meds, though this page didn’t): http://www.epilepsy.com/epilepsy/medicine_cost.html

  23. My partner and I had to pay for our own insurance when we were unemployed (or under-employed) for a long stretch of time. And it cost about as much as Moutain Rose said, with all the other problems she mentions. We were lucky that I had savings that we could draw upon during our mutual unemployment. If we had had to let our insurance lapse then certain things, including my partner’s anti-seizure meds, might no longer be covered now. Because another problem with the insurance system here is that many plans only cover certain conditions if you have had “continous” coverage for that condition since the time it was first diagnosed until now — so a gap in your insurance can cause later problems with coverage as well. I hope that Kassiane is able to find a way around that particular problem :-(

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  25. Since people have brought up the issue of Health Care I was wondering if Kassianne has looked into County Health care which is sometimes Free or very very low cost.. I am not sure how the welfare department works anymore but that could be a resource too.. and for the long haul it might be a good idea to apply for disability benefits..

  26. The medical insurance situation in the US truly is a horrifying and baffling mess, with companies conspiring against clients (patients), all legally sanctioned by the arcane and sometimes confounding local and federal laws. It’s not about “managed health care” but rather “managed health care COSTS”. Each insurance subscriber is an accounts receivable, and subscribers who draw more resources than they pay in, or who could potentially could do so, are considered to be liabilities to be avoided.

    Here’s another example: the week after I got pregnant, my husband lost his job. He was the only one of the two of us who subscribed to a medical insurance plan; employees paid something like half the monthly costs at his place of business. Because I had a minimum-wage job, there was no point in reducing my income by subscribing to a second policy. He has a “pre-existing condition” of asthma, for which he must take daily medications and which lands him in emergency care now and then. (And of course, there are minor things like hearing aids and batteries so he can hear, and eyeglasses so we both can see. I don’t think our insurance covered those much, if at all.)

    As mentioned by others, those “pre-existing conditions” can prevent one from getting new medical insurance. (As mentioned on my blog, I’m still waiting for GINA.) Both medications and hospital care are exceedingly expensive in the States. Fortunately my maternal “pre-existing condition” had not yet been documented by a doctor (so officially it did not yet exist).

    The only way we were able to have any medical insurance (to pay for his medications and my maternal care and future pediatric care) was to continue paying for the plan wholly on our own, which twenty years ago was some $500 per month — half our annual income of $12,000! We literally had to sell our house to do that. (Given that we’d only had the mortgage a few years, we had little equity, but we were lucky to have even that.) I think the prenatal care, labor & delivery and neonatal pediatric doctor care ran close to $2,000, and my doctor had to argue with the insurance company to let me stay a second day. I think nowadays an uneventful L&D is about $10-15K.

    In theory, an unemployed or disabled person can get Medicare/Medicaid, but these are subsistence services, and getting subscribed is a slow and involved process. There is effectively no safety net for the intermittently or under-employed or the under-insured.

    Like millions of others, hubby’s been unemployed due to company downsizing layoffs several times in the past 25 years. Therefore, currently I am covered on my employer’s insurance plan, and hubby has himself and our children on his employer’s plan — this way we have some potential for adding family members if something happens to one of our jobs, tho’ I that might be possible only in August when our respective plan subscriptions are renewed!

    I sent Kassiane some money, and I dearly hope she has people there for her to help with all these bureaucratic arrangements & trips to the pharmacy & doctor.

  27. ARGH

    My mom is in her late 50’s and pays a lot for medical insurance. She works as a home health nurse and my dad runs his own business, so the employer options suck.

    She and my dad finally got coverage.. but with a pre-existing condition clause. This means that her osteoporosis isn’t covered.

    So, the most likely catastrophic thing that would happen (broken bone from osteoporosis)… isn’t covered. Neither is any preventative care.

  28. “Unable to create account,” says PayPal. Let me know if anyone has other ideas for how I can get money to Kassiane.

  29. i feel terrible learning about the mess that kassiane is in. this all seems pretty chaotic somehow and i’m afraid many will get whirled into this chaos. anyway, how can particular people close to kassiane assist in organising and getting an overview of the assistance needed? there is a need to know what the situation is acutely (word? right now) and there needs to be someone who can assist in the more if-not-long-then-not-acute run so that kassiane can be helped to get some decent arrangement that will help her on a more permanent basis (legal advice, medical advice, organisational advice and such).
    also, i don’t know how paypal works, can someone make it possible to transfer help from a simple bank account or wire?
    i realise there is a hasting crisis right now that we need to assist in, but i believe we should help already now to creating som means of organising around the situation to make it clear to all what is the situation, how is it handled and how can we all contribute.
    if this message is unclear it’s because there is only four lines visible in the typing field and also i’m somewhat fucked up over this crisis. i sincerely hope that kassiane has received immediate help and i hope that organisation is being organised so that we can contribute better.

  30. m_b : i think your message made perfect sense, (especially considering there might be some translation-to-english going on?) and had some very good ideas re: the longterm stuff.

    there is a quote i can’t presently find about how it’s almost easier to make things happen in a crisis but the everyday life stuff takes more effort/courage and is more difficult. the original quote said it better; i think it was from one of those Russian novelists…

  31. Oh, I know the quote whereof you speak; it’s one of my faves!

    “Any idiot can face a crisis; it is this day-to-day living that wears you out.”
    ~Anton Chekov

  32. One actually can send money to pay pal account without having own pay pal account, that is if one has credit or debit card. Just go to ‘send money’ tab and enter kassiane_alexandra at yahoo dot com, your own email address and amount (all on the right side of the screen), click “continue” and on the next page enter your address and credit/debit card info. It is safe and quick.

  33. Re: SiCKO

    I saw the movie last week and found it really moving. It’s actually not about people without insurance, but people with it who think they’re “fully-covered” and find out they aren’t. I’ve had some experience with the system and I think the only real “full-coverage” is $1-$2 million dollars cash in the bank. A lot of people are just one major accident or illness from losing everything — medical bills are the #1 cause of bankruptcy in the US.

    A lot of the criticisms of the film have been nit-picks, which are trivial & distract from the main point of the film.

    One story of mine: A relative of mine was in a private hospital ER with a heart rate of 40, and the ER doc was convolutedly explaining how all he could do is have my relative ambulanced across town to the Kaiser ER. A HR of 40 is not stable, but they did it, anyway. Another relative needed 4 more ICU days (according to the doctor) to avoid a complication. The insurance wouldn’t cover the additional days, so she was moved out of ICU, and the complication (life-threatening) happened (said relative is fine, luckily). And that’s 2 of the things that happened.

    OK, enough blog-comment hijacking to plug a movie. (Sorry, if this post is inappropriate.)

    For info. about the American health care system & the movie:


    The film is availible via P2P, and Moore says he doesn’t mind if people pirate a copy to see it.

  34. While it’s tragic for anyone to end up in this kind of situation, sans medical care, do keep in mind there are two sides to the story here. The truth is probably somewhere in the middle.

  35. All that matters is that someone is without medical care. The rest is in comparison petty bickering and gossip that I won’t allow here, so don’t try.

    Also, while “The answer lies somewhere in the middle” sounds good on paper, it’s not necessarily true in reality, otherwise the solution to every dispute would be something approximating the average of all sides.

  36. It’s August 16th now. Is everything ok? I had to take out two credit cards to cover recent medical emergencies–at one point I couldn’t get a doctor to see me so I was taking my roommate’s dog’s unused antibiotics–so I slightly know the prbolems. Let us know what’s going on, please.

  37. my husband is bi-polar and has epilepsy. They took his medicaid after he received disability. He needs these meds. What do we do?

  38. Hi Susan,

    What’s available depends on where you live and a few other things. One place to start is by calling 211, which will connect you with United Way’s Information and Referral line. They may be able to help get you in touch with services you can afford.

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