Originally Posted by The Rani

Is there a reason that an EpiPen wouldn't work?

An epipen does not work with this particular condition. Although similar to an allergic reaction one might have to say a bee swelling it's not the same thing and doesn't respond the same. The condition is called Hereditary Angioedema. http://www.haea.org/what-is-hae/

Originally Posted by The Rani

Ick. My friend's son has that. Another previously "rare" condition that is now becoming more common.
What the heck is going on with our planet.

My guesses:

a) science wasn't developed enough to notice it so much

b) there are more people alive on the planet than ever before and therefore the likelihood of more cases appearing are more likely

c) the majority of people who suffered from the disease did so in silence or weren't aristocratic enough to be noticed by scientists of previous eras

d) with the amount of chemicals spewed into the atmosphere/water/ecosystem, it's triggering previously dormant genes or causing mutations

e) the people who had the disease in previous time periods had a larger tendency to die

Take your pick.

~Chas'88

Originally Posted by The Rani

Ick. My friend's son has that. Another previously "rare" condition that is now becoming more common.
What the heck is going on with our planet.
And yeah, it's not an allergic reaction, so steroids and stuff won't work.
Not a fun thing to have, even with treatment.

In the case of my son it's hereditary. My husband has it. My father-in-law has it. My husband's grandmother had it and so did her dad. My husband also has some cousins with it too.

My husband and father-in-law do take a type of steroid every day that helps control the attacks more. But my son isn't old enough yet to take that medication. Once he has reached adulthood, he can take the steroids. And although the steroids don't completely control it, it does cut down on the number of swellings my husband has.

I don't know who your friend's son sees, but one of the leading specialist in the country is my son's doctor. I know people come from all over to country to see him. We are lucky in that he is only an hour away from us. If your friend is interested in more information about our doctor or just wants another parent going through this to talk to, I'd be happy to talk to her. Just let me know in a private message and I will pass on my email to you to give to her.

Amy, is your insurance through your husband's work? If so, have you talked with human resources about the insuranc enot wanting to pay for this medicine?

I'm so sorry to hear that you are having to deal with getting the med for your son's illness. This, coupled with your concerns for him, must seem like a very bad dream.

Originally Posted by Deb C

Amy, is your insurance through your husband's work? If so, have you talked with human resources about the insuranc enot wanting to pay for this medicine?

I'm so sorry to hear that you are having to deal with getting the med for your son's illness. This, coupled with your concerns for him, must seem like a very bad dream.

The insurance we have through his work just plain sucks. They put us on this international insurance at the beginning of year because he travels so much outside of the country. He did try to fight it at the time, but it was no use. At this point, I'm just hoping something comes through with the prescription assistance I've applied for.

Originally Posted by ASB65

The insurance we have through his work just plain sucks. They put us on this international insurance at the beginning of year because he travels so much outside of the country. He did try to fight it at the time, but it was no use. At this point, I'm just hoping something comes through with the prescription assistance I've applied for.

Your in my thoughts and prayers. And if you need help kicking your insurance company's rear, let me know.

Originally Posted by Chas'88

My guesses:

a) science wasn't developed enough to notice it so much

b) there are more people alive on the planet than ever before and therefore the likelihood of more cases appearing are more likely

c) the majority of people who suffered from the disease did so in silence or weren't aristocratic enough to be noticed by scientists of previous eras

d) with the amount of chemicals spewed into the atmosphere/water/ecosystem, it's triggering previously dormant genes or causing mutations

e) the people who had the disease in previous time periods had a larger tendency to die

Take your pick.

~Chas'88

You forgot the most important selection:

f) all of the above

Here's some info about a doctor who is helping uninsured or underinsured people get lab tests for a much lower cost.

http://www.cnn.com/2010/HEALTH/12/08...sts/index.html
<http://www.cnn.com/2010/HEALTH/12/08...sts/index.html>

Here's some interesting insights in a long graphic form --

http://www.businesspundit.com/us-hea...-world-part-2/


High medical costs in the US are NOT DUE to us having too much -

- smoking
- drinking
- obesity
- malpractice

High medical costs in the US ARE DUE to -

- providers charging more becasue they can
- astouding overhead costs
- massive outpatient costs (hospitals pursue quicker proceedures with highest profit margins)
- our doctors our overpaid

Not really surprising to anyone, but the combined graphics are pretty cool.

For those who are not my facebook friends, here is copy of my most recent update...

"I'm pretty frustrated with the two hospitals in my town. Not only will they not carry the drug Matthew needs in the event of another face swelling, but I just learned they have said they won't even administer it to him if I were to bring in the medication to the emergency room with him. What kind of world do we live in when hospitals refuse to help a child (with insurance, BTW) who could die without treatment?"

I'm so pissed at this moment, that if anyone were to come up to me and make some sarcastic remark calling healthcare reform "Obama care" or tell me that our medical system in this country is so wonderful and doesn't need reform, I'd probably slug them. (And I'm not a violent person.)...But this very personal to me. This is my son's life.

At this point, I'm still working on trying to get the medication to have at home and I'm left with two choices if we can get it sent to our house. Drive an hour to a hosptial in Dallas in the event of another face swelling and hope his tongue or throat doesn't swell up on the way there, or learn to give an IV myself...I guess, I will be learning how to do it myself once the medication is obtained.

Originally Posted by ASB65

For those who are not my facebook friends, here is copy of my most recent update...

"I'm pretty frustrated with the two hospitals in my town. Not only will they not carry the drug Matthew needs in the event of another face swelling, but I just learned they have said they won't even administer it to him if I were to bring in the medication to the emergency room with him. What kind of world do we live in when hospitals refuse to help a child (with insurance, BTW) who could die without treatment?"

I'm so pissed at this moment, that if anyone were to come up to me and make some sarcastic remark calling healthcare reform "Obama care" or tell me that our medical system in this country is so wonderful and doesn't need reform, I'd probably slug them. (And I'm not a violent person.)...But this very personal to me. This is my son's life.

At this point, I'm still working on trying to get the medication to have at home and I'm left with two choices if we can get it sent to our house. Drive an hour to a hosptial in Dallas in the event of another face swelling and hope his tongue or throat doesn't swell up on the way there, or learn to give an IV myself...I guess, I will be learning how to do it myself once the medication is obtained.

Have they said WHY they won't give it to him? Refusal to treat a patient with what he needs can be considered malpractice, can't it? Unless there are good medical reasons for it such as "We have no idea how to do this."

Originally Posted by The Grey Badger

Have they said WHY they won't give it to him? Refusal to treat a patient with what he needs can be considered malpractice, can't it? Unless there are good medical reasons for it such as "We have no idea how to do this."

I asked the person from the pharmaceutical company, who told me this, why they wouldn't administer the drug? She gave me some off handed remark about being afraid of a lawsuits because people in this country sue for over everything and ruin it for the rest of us."...So take that for what it's worth...So I don't know. I guess hospitals are more afraid of being sued for doing something than for not doing something...What ever happened to the hippocractic oath?

And it's not like it's an illegal drug. It was approved for use in the US in January of 2010.

As far as not knowing how to do it goes, along with the medication, a letter is sent with specific instructions on how to administer it. I'm sure if my sister (who is an EMT) could figure out how to start an IV. I wish she lived closer. She would do it in a heartbeat to save her nephew's life.

Originally Posted by The Rani

No hospital will administer a medication that someone brings in with them, regardless of what it is, for liability reasons. They probably don't stock it themselves because it is so expensive and used so rarely.
Suggest to the drug co. that they pay for a nurse to teach you how to start an I.V. line. It's not that difficult, and they'd probably go for it.

That is exactly what we are doing. Once I get the medication, they will send out a home healthcare provider to teach me how to administer it. I do admit that it does make me a bit nervous to do this, but I suppose I will get use to it. (I was scared to give my shots when I was going through the IVF procedure to have Matthew, but after the first time of giving myself a shot, I got use to it.)

But the whole thing still pisses me off. I know there are work arounds like what I've mentioned, but the entire situation that a hospital would refuse to give a prescribed treatment (the only thing so far that has been found to work), just blows my mind.

Amy, when talking with the hospitals in your town, who did you speak with? Just from experience, when told no at the bottom, go to the top. Never take no for an answer. While it is a policy to usually not admiinister anything that has been brought into the hospital, there are ways around this. You can offer to sign a waiver that relinquishes any responsiblity of the hospital. Also, there can be exceptions made for sealed medications. If a hospital in Dallas will do it, then so should your local hospitals.

In our town there is a TV station that takes local citizen concerns to the air. Do you have anything like that in your area? Just mentioning media to a hospital can do wonders.

However, if you are willing to learn to start an IV, this could be the path of least resistance. You could possibly contact your local emergency service and ask them where you could get the training. Or would they start an IV in an emergency if you were to do the actual administering of the medication?

Also, ask your son's doctor for assistance.

Originally Posted by Deb C

Amy, when talking with the hospitals in your town, who did you speak with? Just from experience, when told no at the bottom, go to the top. Never take no for an answer. While it is a policy to usually not admiinister anything that has been brought into the hospital, there are ways around this. You can offer to sign a waiver that relinquishes any responsiblity of the hospital. Also, there can be exceptions made for sealed medications. If a hospital in Dallas will do it, then so should your local hospitals.

In our town there is a TV station that takes local citizen concerns to the air. Do you have anything like that in your area? Just mentioning media to a hospital can do wonders.

However, if you are willing to learn to start an IV, this could be the path of least resistance. You could possibly contact your local emergency service and ask them where you could get the training. Or would they start an IV in an emergency if you were to do the actual administering of the medication?

Also, ask your son's doctor for assistance.

I have been told by manufacturer of the pharmaceutical company that they will send out a home health care provider to teach me how to administer the IV. This is something I have decided I need to do. That way if we are away from home and something happens, I will always know that the medication can be administered to him no matter what, without having to deal with whether or not a hospital (regardless of where we are) will treat him.

I will also be discussing this with his doctor. I already know that the hospitals around here have refused to purchase the drug because of the cost, but once I have the medication in my hand, I will go from there, and contact his doctor in Dallas as where to proceed from there. But first I have to be able to get it delivered to our house. And I'm still walking through that process.

But that doesn't change the fact that I'm still really ticked off about the whole situation.

Originally Posted by ASB65

I have been told by manufacturer of the pharmaceutical company that they will send out a home health care provider to teach me how to administer the IV. This is something I have decided I need to do. That way if we are away from home and something happens, I will always know that the medication can be administered to him no matter what, without having to deal with whether or not a hospital (regardless of where we are) will treat him.

I will also be discussing this with his doctor. I already know that the hospitals around here have refused to purchase the drug because of the cost, but once I have the medication in my hand, I will go from there, and contact his doctor in Dallas as where to proceed from there. But first I have to be able to get it delivered to our house. And I'm still walking through that process.

But that doesn't change the fact that I'm still really ticked off about the whole situation.

You have every right to be ticked off . This is your son's life they are messing with. And being a mom, I can tell you, I'd be just as upset as you are. If ever there was an instinct in women, it is being a protector of our children. Your doing more than a good job at that.

Ugh, these hoops they are making you go through, Amy, are pathetic!

Thanks everyone for your words of support. And you are right, Rani. I do need to be strong so I can help my son...I can do this. If my flaky little sister can be an EMT and perform life-saving actions on people (and start an IV), I can do it too.

It took me a long time to realize there is no point in fighting battles that I can't win, because in the end, I just come out more exhausted and a little bit more crazy than when I started. The best thing to do is find another solution around the problem. And that's what I'm going to do this time too.

I told my son that we couldn't go to the hospitals around here if has a face swelling again because they wouldn't give him his medication. He just looked at me very confused and asked, "Why wouldn't they help me, Mom?" And you know, I just didn't have an answer to that question. I was at loss for words at that moment. So instead I looked at him and said, "But don't worry, because I'm going to learn how to give you your medication, so we won't have to worry about that." With that he got up from his chair, walked over and hugged me...And that was pretty special considering most days my adolescent son gives me eye rolls and tells me how annoying I am...But that hug was enough empowerment for me.

Originally Posted by ASB65

Thanks everyone for your words of support. And you are right, Rani. I do need to be strong so I can help my son...I can do this. If my flaky little sister can be an EMT and perform life-saving actions on people (and start an IV), I can do it too.

It took me a long time to realize there is no point in fighting battles that I can't win, because in the end, I just come out more exhausted and a little bit more crazy than when I started. The best thing to do is find another solution around the problem. And that's what I'm going to do this time too.

I told my son that we couldn't go to the hospitals around here if has a face swelling again because they wouldn't give him his medication. He just looked at me very confused and asked, "Why wouldn't they help me, Mom?" And you know, I just didn't have an answer to that question. I was at loss for words at that moment. So instead I looked at him and said, "But don't worry, because I'm going to learn how to give you your medication, so we won't have to worry about that." With that he got up from his chair, walked over and hugged me...And that was pretty special considering most days my adolescent son gives me eye rolls and tells me how annoying I am...But that hug was enough empowerment for me.

You are so right, you can do this. And when an adolescent son gives yiu a hug, that's a huge affirmation of agreement.

Originally Posted by Deb C

Amy, when talking with the hospitals in your town, who did you speak with? Just from experience, when told no at the bottom, go to the top. Never take no for an answer. While it is a policy to usually not admiinister anything that has been brought into the hospital, there are ways around this. You can offer to sign a waiver that relinquishes any responsiblity of the hospital. Also, there can be exceptions made for sealed medications. If a hospital in Dallas will do it, then so should your local hospitals.

In our town there is a TV station that takes local citizen concerns to the air. Do you have anything like that in your area? Just mentioning media to a hospital can do wonders.

However, if you are willing to learn to start an IV, this could be the path of least resistance. You could possibly contact your local emergency service and ask them where you could get the training. Or would they start an IV in an emergency if you were to do the actual administering of the medication?

Also, ask your son's doctor for assistance.

And learning how to give your own IV is a step on being less dependent on a flawed health care system.

Originally Posted by The Grey Badger

And learning how to give your own IV is a step on being less dependent on a flawed health care system.

Consider it a teeny, tiny step beyond basic first aid. It's not quite the kind of thing that "everyone should know how to do", but there's certainly no reason not to learn how to do it.

Hell, I've been totally terrified of needles for most of my life.. but I made Andi show me how to do the basic maintenance stuff like IV insertion and the couple kinds of injections (in the muscle and under the skin, at least -- not going near the spine, thank you very much...) when she was studying nursing. It definitely seems like one of those 'might come in handy' skillsets...

The New York Times
May 13, 2011
Health Insurers Making Record Profits as Many Postpone Care
By Reed Abelson

http://www.nytimes.com/2011/05/14/bu.../14health.html


Comment: The headline says it all. Under the Affordable Car Act we're
getting more of the same, except worse (higher costs, skimpier coverage). It
doesn't have to be this way.

Originally Posted by Deb C

The New York Times
May 13, 2011
Health Insurers Making Record Profits as Many Postpone Care
By Reed Abelson

http://www.nytimes.com/2011/05/14/bu.../14health.html


Comment: The headline says it all. Under the Affordable Car Act we're
getting more of the same, except worse (higher costs, skimpier coverage). It
doesn't have to be this way.

Jail to the thief!

Originally Posted by Deb C

Comment: The headline says it all. Under the Affordable Car Act we're
getting more of the same, except worse (higher costs, skimpier coverage).

The article doesn't make that case at all. It clearly blames the recession and the fact that people are seriously cost-conscious. In no way does it argue, or present evidence, that the ACA has made this problem worse, as you are suggesting, without presenting any evidence yourself to back that up.

It doesn't have to be this way.

Indeed it doesn't, but please, stop blaming the watered-down attempt to fix the problem. The only way in which the ACA is to blame is that it didn't do enough.

Originally Posted by Brian Rush

The article doesn't make that case at all. It clearly blames the recession and the fact that people are seriously cost-conscious. In no way does it argue, or present evidence, that the ACA has made this problem worse, as you are suggesting, without presenting any evidence yourself to back that up.



Indeed it doesn't, but please, stop blaming the watered-down attempt to fix the problem. The only way in which the ACA is to blame is that it didn't do enough.

The watered down ACA is part of the problem. I have posted numerous articles from activists in the trenches, mainly doctors, who see that handing over our health care to the for profit insurance industry is a huge problem that has increased costs and created more under-insured citizens.

And it didn't have to be this way if Obama had kept his campaign promises of transparency and working toward a health-care for all. instead we got back room deals and a reform that was originally written by a Republican. He gave more access to lobbyists than he did the proponents of a single payer system.

It's time we stop accepting crumbs when we need at least a piece of the cake.