Since the delightful people who are 'in charge' of my handicapped childs' medical needs are certainly not concerned with what if scenarios, I have a few thoughts for your dining and dancing pleasure.
Music, maestro, if you please . . .
My son takes Tegretol 3 times per day. Because it is a controlled substance, we are NOT allowed to stockpile any against a coming crisis. The issue is that the feds think we must somehow have magic powers to prevent seizure activity sans medication.
Then there is the diapering issue. Since he is totally incontinent, we have to have diapers. I have found several outlets that sell adult sized WASHABLE diapers that are GUARANTEED to contain what an adult can produce. (Gross I know but when you deal with it every day, you do what you have to do! NOTE: Oh, and by the way, be VERY careful how you search for the adult diapers as apparently there are perverts everywhere!)
Now we come to the main issue, specialized formula for enteral feeding. The feds are currently giving us a specific amount of formula each month and monitor it as carefully as they do his Rx meds.
Without the special formula or resources to make some (we are currently looking into getting more powdered milk and liquid vitamin supplements to augment our year's supply stocks.), he will starve.
Now, before anyone tosses themselves onto the altar of imperical evidence and faith promoting stories of how they were brought back from death by the priesthood, we HAVE had multiple blessings and miraculous intervention for our child. The fact that he is EVEN HERE is a miracle.
But for whatever portion of mortality his journey brings him to, THIS IS his lot in life. And by extension, ours.
So, let the tango begin. Slap the rose between your teeth, be careful of the thorns and remember that footwork is only important if you like your toes.
My family is in the same boat. If your prescription has a street value, you can bet the powers-that-be won't be allowing you to "stockpile it for a rainy day".
I don't know anything about Tegretol - is it something that Canadian or Mexican pharmacies sell?
The only other tango step I know is the "medically fragile" theory, and that's just not very fun to think about.
LM
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And I'd discuss the holy books with the learned men, seven hours every day. That would be the sweetest thing of all.
Tegretol is oddly enough considered a 'fun drug' to junkies.
Go figure. It tastes nasty (reflux from a feeding tube gave me that insight), it is corrosive and highly acidic, and is riddled with side effects.
his other meds and their side effects are no fun either unless you consider bowel complaints exciting and groovy good times.
and the specter of having a worse medical plan than we already do will doom a lot of us.
as for getting the meds through other channels, they aren't too happy about bulk purchasing either.
I have also learned that relying in faith on the Lord has nothing to do with what the outcome will be sometimes. We have faith not only that things will work out, but sometimes so that we can get through whatever HIS plan for us really is.
Hmm. That's a good point Belle. Can I call you Belle? :) (I think every one has a shortened version of their name around here). I never thought of what you mentioned (and I should have). Stockpiling my son's pull-ups so far isn't much of a problem. Every month we get a delivery of pull-ups, wipes and gloves. We go through the wipes pretty fast, but the pull-ups we have plenty of and we have plastic gloves coming out of our ears. So if you want any, let me know!
But, meds that is a problem. None of my autistic/disabled son's medications are controlled substances, but their expensive and the insurance doesn't want to pay for them any sooner than is absolutely necessary. I get them refilled around the same time every month. Unless I get them filled through mail-order, but then if I did that I couldn't get them filled at a retail pharmacy either. (I see people go through this dilemma every day at the pharmacy I work for). I constantly have to call insurance companies to "beg" them to fill even a 14 day supply of people's meds, simply because their mail-order didn't or won't arrive in time.
My daughter's medication is a controlled substance however, she takes phenobarbitol. Now, if people had the money they could stockpile their drugs and pay cash for them, but the cash price for one of my son's drugs for a one month's supply is nearly $900.
This is why many people go to Canada to get their drugs or even Europe.
Belle works for me. One ringy-dingy, two ringy-dingies.... (yeah, it's an old reference, but it still works for old people! ha)
His meds, due to his condition and his age are covered with no copay by Medicaid. It's his only insurance since the delightful people at our old family coverage company politely declined to continue covering him and me.
Him for prolonged "illness" and me due to multiple cancer surgeries. Ain't life fun!
And because we like to eat more than once a month, we can't afford the premiums to reinstate insurance for me and the boy. So, he is covered by Ala Medicaid and I have nothing. But so far all I have managed to do is break my wrist boxing. (and no, that isn't a joke or a typo)
Thank goodness for a walk-in Critical Care center that takes the plastic!!
But, I checked on the out of country options and that isn't an option either. The prices are unbelievable and they, too, have a limit on how much they will send at a time. And because I am naturally a pessimist, I know strikes and snowstorms and tornados and lazy streaks will prevent it from coming on time at least once.
As for dipes and wipes, we are up to our eyeballs (literally) in diapers thanks to our new suppliers. And they are regular as clockwork in delivering what we need.
But if the folks who provide the formula decide to quit, then not only are his foodstuffs stopped, but replacement G-tube kits as well.
The Lord will make all things possible. But I still try to prepare.
My son has Medicaid for a secondary insurance. I'm amazed they even pay for one of his medications (you know, the $900 one). Medicaid is very pick and choosy about what they will and will not pay for. I think the only reason they do, because they only have to pay for our co-pays and whatever our primary insurance won't pay for. I feel for ya! And it is true, somehow the Lord takes care of those that take care of themselves.
P.S. Actually can I call you Bama too? Coco called you that in another thread. I like that one bettter.
alabamabelle wrote:I have also learned that relying in faith on the Lord has nothing to do with what the outcome will be sometimes.
Indian: Call on God, but row away from the rocks. Arabic: Trust in Allah, but tie your camel. German: God gives nuts, but he doesnt crack them. Japanese: Pray to God, but hammer away. English: God helps those who help themselves.
LM (Welcome to Bountiful, by the way!)
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And I'd discuss the holy books with the learned men, seven hours every day. That would be the sweetest thing of all.
I don't know that I have an easy answer. I'm sooo glad that I'm not in that situation. I have discovered through life that I don't want to trade troubles with anyone.
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If ye love wealth better than liberty, the tranquility of servitude than the animated contest of freedom, go from us in peace. May your chains sit lightly upon you, and may posterity forget that you were our countrymen! - Samuel Adams
alabamabelle wrote:as for getting the meds through other channels, they aren't too happy about bulk purchasing either.
I'd be slowly and quietly stocking up through your alternative sources. Do you have access to an LDS doctor who understands preparedness that will work with you on this issue?
I'm a pharmacy technician. I type and fill prescriptions, proces them throughs insurance, fill the prescriptions, whch includes pulling and counting the medications. About the only things I can't do that a pharmacist does is answer medical questions and do the final verification of the prescription and fill prescriptions for narcotics.
I'd like to tell you a story a good friend of mine who is a Stake President told me. He said that in the event a major disaster he would need to get home to take care of his family. Thinking in terms of an earthquake he realized that he would not be driving home. He told me he would take the first bicycle he found to ride it home (faster then walking). He said that there was no doubt in his mind that the Lord would not look on this action with disfavor.
Thinking about the aftermath of Katrina, I have come to the conclusion that there is a BIG difference between looting and surviving. The people who were in Wal Mart getting food and water etc were trying to survive. The looters were the electronics etc thieves.
I certainly don't advocate criminal activity in any way, but I thought these two stories might give you food for thought under, as coco puts it, apocalypse secnarios.
we are doing all that we are legally able to do to prepare for our son.
the sad truth is that in order to stockpile a controlled substance a fair amount of LYING is involved and while I am no ray of sunny perfection, I don't feel I can ask the Lord to help me lie.
Fortunately, with my previous occupation in medicine, I have a couple of good friends who are docs (one of whom I used to work for as a P.A.) and I feel sure that should the time come where things are hard that I can call on either of them and they can help my son.
They both know him, so I don't worry too much. That and I can push his wheelchair to our local hospital from my house. It's only a few blocks from me and I have done it before when my crochety old van was on the fritz.
The boy thought it was a grand adventure and I was thoroughly convinced I'd have to die to feel better by the time I pushed uphill to get him home. The ride wasn't that hard going there. . .wonder why?
I know it is gross and not pleasant, but there are the "adult cloth diapers". Our nursing home uses them for some peple. Ihate the cloth diapers but they generally do the job. (though women sometimes complain they make them look pregnant). Also I know to properly clean/santitize them you'd need lots of hot water which wouldn't be there in an emergency anyway. But at least it is something.
Have you ever written to the AMA or some national Pharmacy Board to see if there can be a law to help honest, law-abiding people such as you? Maybe write Elder Nelson to see if there is someway the church could help push for such legislation. (maybe there would need to be special criteria for people to stockpile like that. And having had a job where I poured medication for those w/profound disabilities, quite a few had Tegretol. As I recall their doses where quite a few pills daily so I can see how hard it would be to store for months.
Wheelchair: I know how hard it is to push wheelchairs up hills. And pushing a wheelchair in the sand is very hard.
if you do have a good toolkit for repairs, do you have extra "replacement parts" for what needs? Maybe an extra tire if the tire is damaged? If your son is still growing, maybe you can't prepare a lot w/that. If he is physically able to tolerate sitting in a lightweight transport chair, maybe one of those would help. One young women I used to care for had extremely low tone- yet she was a tall girl. It was hard for her mom to push her in a w/c and she actually used a big "adult" stroller instead, even though something w/more body support would have been better.
Also this isn't great for everyone's skin but we used to use shaving cream for helping our clients w/ bm hygeine- it worked really well and disn't cause skin problems. (until we were prohibited from using it...but it was a lot cheaper than the traditional incontinence sprays)
* With the feeding tubes and general cost of items: if your area has a freecycle, that might help you at times. Also perhaps there is an association in your area for whatever condition your son has. So maybe through these type of groups, some of the items he needs will be donated- for example, just last week, through Freecycle, I got a brandnew tub seat for an older friend in my stake who has balance problems. So in finding that item, it saved her over $30 and she can use her money for something else.
OK, I feel tired thinking of the heavy load in your life you face. I am sure one day your son will thank you for thinking of him and preparing for all these possibilities. I hope you will find the resources to help you in this plight. And I will pray that you will never be in a situation where you need to use these type of plans!
* Is there a chance your son would need oxygen? that might be something else to have on hand, just in case.
we have looked into the adult cloth diapers and they aren't that bad. as for hot water in emergencies, this camper has that under control and the fuel to fire up the hot water heater as well.
I also have a hand crank washing machine and I am quite familiar with line drying for clothing having had a great deal of my misspent youth between lines of the sheets and towels that Momma had hanging out to dry. Great places for hide and go seek and to pretend that you are invisible.
I also have a small solar hot water heater as well. So laundry isn't a problem. As for cleaning and sanitizing, the hospital used a lot of peroxide and the like type cleansers so I am into that as well.
J-boy uses the Tegretol suspension since he is on a feeding tube so the liquid takes even more space than the pills. And pharmacology for pills into liquid isn't high on my list of skills. I've done it, but only in emergency circumstances.
We are allegedly getting his new wheels on Dec. 3rd which are these cool all terrain wheels and cams that will really give us mobility plus, but I worry that we will get all the way into the big city and they will tell us "oops! they aren't in yet and we forgot to call you". (and no, we can't call them because they are perpetually on the answering machine and don't return their calls)
didn't think about the O2 issues, but we do have our own nebulizer and a backstock (thanks to a VERY GOOD WOMAN!) of inhaler meds for the boy.
O2 tanks are pretty expensive and unless you have an Rx, the folks around here won't sell you anything but the industrial O2 for welding. Not exactly what I want to pump into anyones lungs.
I'm not tired from helping my son. He is a 3 day wonder and an absolute joy. I am tired from dealing with ME. Bless his heart, he has it all figured out and is patiently waiting for the rest of us to get a clue.
That and he has a deliciously wicked laugh . . . one wonders where that might have come from.
Belle works for me. One ringy-dingy, two ringy-dingies.... (yeah, it's an old reference, but it still works for old people! ha)
