Sunday, March 28, 2010

Earth Hour

Last night, for what I think was the third time ever, we took part in Earth Hour.  The time between 8:30pm and 9:30pm when the whole world turns off all lights and nonessential appliances (such as the energy-sapping computer I'm using right now) and televises their dedication to energy preservation. 
The televised part confused Bumblebee, so we stopped watching early on. 
However, the girls were happy to light their room by candlelight as they tried to fall asleep without their friendly hall-light shining through the door. 
Mr. Violets and I enjoyed the quiet, the flickering candles, the chance to simply sit.  Okay, fine.  I read by candlelight.  And he watched until he fell asleep. 
But it was oddly rejuvenating. 
It felt good to remember that plugging in is a privilige we've come to take for granted.  Even the ready access we have to literature is a blessing that is relatively recent in the grand scheme of things. 
Hot water, clothes washers and dryers, computers and fans /9not to mention heaters) are all the benefit of technology.  But with technology comes responsibility, and Earth Hour gave us a chance to remember that we've gotten lazy with our lights.  It's time to reconnect, to the Earth, and make sure our tread is light.
Recently, I requested copies of our medical history.  Instead of just sending them to our new doctors, I asked for an extra copy to be sent here, to us.  My intention is to keep a copy in my own files, so that I know exactly what the new doctors have on file, and I admit I was a bit curious, myself, to see something more than the simple test results that get forwarded to me.

In other words...what notes do the doctors make to themselves?

If I was expecting to find big, bold declarations of "OMG, corn is evil!  This woman must never be exposed to corn products!  Or gluten!" in decisive, red warning letters, I was sorely disappointed.  Corn gets a brief mention, and is followed up in several mispellings.  In fact, at one point it states that I'm allergic to "cort- meds" instead of corn in meds.  There is a cataloguing on symptoms that wane and wax, a lot of "symptomatic relief through dietary measures" and "told to continue". 

Maybe my diagnosis really is "interesting, very interesting."  (Just kidding.  It's actually "Probably stress related, but...")

I found it fascinating that while the corn, and the gluten, were in there, and validated...they seem such a small, insignificant portion of my medical record and my kids medical records.  There's much more in there on discussion about vaccines, or the fact that I actually ask questions about medical treatments or diagnosis (I also found that the question asking does not necessarily go over well.) 

I also found in there some comments that I haven't seen.  Some blood test results that the doctors made note they wanted to keep an eye on, while they reassured me that the results were meaningless and they don't need to follow up.  I'm not sure how to address that with the next doctor.

All fascination aside, it's left me thinking about food and diet and doctors.  How the AMA and various cancer societies, and even certain medical groups (*ahem*Kaiser*ahem*) have amassed campaigns to raise awareness about the important link between diet and health.  How questions about food seem to be one of the first that I'm asked when I present a digestive complaint to either my own dr, or the children's pediatrician.  And yet, in the grand medical scheme f things, that dietary journey really plays a small part in their thinking process.

My life has changed dramatically since giving up corn.  Pain is no longer consuming, although the threat of an emptying stomach lingers.  I've given up restaurants, and discovered that movie theatres make me itchy and make it difficult to breathe.  Dinner, lunches, parties, baking have all become challenges.  Simple social situations are obstacles in that the ice breaking meal must be avoided.  There are challenges in self consciousness, assertiveness, courtesy, and will power.  There's lack of spontaneity and the fear of food (ingredients, suppliers, labels) and how to balance living with living healthfully, There is obsessive compulsive label reading, often followed by company inquiries. 

And that all boils down to "advised to continue as it seems to help."

I've learned to identify corn derivatives by monikers like dextrose, cellulose, and citric acid.  I've learned to trace potential contamination from corn by processing lines, packaging and ingredients like "juice".  I've spent hours on the phone with drug companies.

I'm not sure what this feeling it leaves is.  Part is self doubt (although I can conjure the frustration I felt chained to the bathroom a few years ago after accidentally switching toothpaste with my husband.)  Part is frustration..."All you've had to offer me the last few years is 'be more strict with your diet, read labels better' and 'wait and see' so I've been driving myself batty trying to comply and the notes boil down to 'huh, probably stress, but diet helps?"  as if it's a secondary afterthought?
The Celiac part isn't even in there.  The shaky shivers and projectile vomiting is recorded as if I were trying to be noncompliant during a ct scan.  (In hindsight, the drink was flavored.)  The whole arm rash that followed the contrast dye isn't in there either.  I never did learn whether that was a corn reaction or some sort of iodine reaction. 
Perhaps I do complain too much.  But why do I end up losing weight and passing out if I ignore my symptoms and try to live my life the way others seem to live theirs?  Volunteering freely, walking a mile or more without napping before and after, showing up to stand on their feet even with a cold?  Why can't I breathe when trying to help with paper mache?  And why do I spend a month cuddling with a heating pad after trying to ignore airborn particles?  Or accidentally ingesting "real" corn derivatives?   Why doesn't pretending it's just my imagination banish it all to my imagination, especially if and when it's annoying not scaring me?  (And I do follow that path every now and I concerned?  Not really.  Mostly annoyed and a little bit lost.  I want to be there, I want to be dependable.  But then, when I feel most confident, I'm floored.  Usually it's traceable to my getting cocky and missing some dumb ingredient because I was feeling great.  And then it's a painful trip back up to confidence.) 
Am I just crazy?  Maybe.  But then a lot of other people are crazy, too.  (And they seem to be following my same pattern.)  Maybe it is stress.  Stress plays such an intricate role in everyone's life these days.  And dietary restrictions are certainly stressful.  But ignoring them leads to more stress.  (Who can I call to pick up the kids?  Maybe I'll be okay to drive.  Or, um, maybe not.) 

Sometimes I wish I had the means to follow up on research.  To put all these pieces together and make something meaningful to bring to society and say "Look.  What we're doing is wrong.  Look, people are suffering.  Look.  There's an answer.  And it's not a pill."  Other days I wish there was a simple pill. 

At any rate, I see why corn allergy isn't headline news.  It's taking a backseat to other conditions the medical community tries to rule out.  It's not until a gung-ho professional starts to make connections, and see that medical equipment and procedures really are affected by the supplies and the ingredients used in treatments that studies will be done.  How many people will be dismissed?  Will continue to fight to follow that tiny thread of light through the dark maze of dietary questions?  Corn is just a kernel to most doctors.  For us, it's already popped. 

Passover and Gluten

They say there are two things in this world that must never be discussed over a friendly dinner.  And those are religion and politics. 

Unfortunately, when it comes to food, religion sometimes is intricately linked with what one desires to ingest. 

In fact, Passover is right around the corner.  And with the Passover, comes a seder.  And at every seder is a very important rule.  Throughout Passover, strict Judaic law prohibits the ingestion of any fermentable grains.  The exception to this rule is matzo, grown, harvested and treated in strict accordance with Old Testament laws. 

Since traditional grains are forbidden during the Passover, many people presume that all Passover foods are gluten free.  This is, unfortunately, not true. 

While many Kosher for Passover items are, indeed, gluten free, anything containing Matzo or Matzo flour is not.  Macaroons, safe.  Matzo balls, not safe. 

There is some discussion about whether or not gluten is found in matzo meal.  This debate often crosses into religious territory.  There are individuals who believe that for the sake of unity, they must consume a small amount of Matzo during the Passover seder.  They feel that during the processing of the matzo meal, and the Rabbi's blessing, the gluten is essentially removed from the grain.  Now, it may be that in faith G-d will bless the individual and help their body to avoid damage from a small amount of gluten grain taken solely as a religious ritual.  It may also be that a small amount of gluten grain once a year is not enough to cause permanent damage to an individual who is otherwise extremely cautious. 
However, the matzo meal itself remains a gluten grain.  And as such, it poses a risk to those with Celiac disease, and anyone with a wheat allergy. 

On the other hand, it's corn free for the uncorny wheat eater. 

The corn free celiac will be happy to know that most kosher-for-passover items are safe for cosumption.  The ingredient list should be scrutinized for the words "matzo" or "matzo meal", both of which must be avoided.  There may be a few organizations which do permit corn derivatives in their products, under the assumption that to avoid corn completely only for Passover is an unrealistic endeavor.  However, they will state the source if corn is, indeed, used, out of respect for the strict observers. 

For most traditional wheat and corn ingredients, potato is used as a starch source.  Almond meal is also used freely in Passover foods, so if there is a nut allergy in the house read carefully for that, too.

Kosher is not allergy friendly.  Nor is it a health conscious certification.  My kids were disappointed to see that of all the kosher for passover candy displayed, not one was free of artificial coloring and flavoring.  It's also worth noting that many of the products are full of sulfites.  Kosher products can be a wonderful addition to a food allergy family, but only in that grains are clearly listed on Passover products (as is soy, which is also forbidden during Passover) and milk is also clearly listed, since milk and meat cannot be consumed at the same time. 

Tuesday, March 16, 2010

Planning a Gluten Free Birthday Party

It's that time of year again.  The crazies set in, and on top of all the science experiments, girl scout cookies, homework, classes, and "finally, the big holidays are over, let's put as much focus as we can on the little ones" projects...we have two birthdays to celebrate!

With food allergies and chronic health woes, the birthday parties are more challenging than one might suspect!  Once upon a time, we started birthday talk with "What will we serve?"  We dreamt of cake, we agonized over appetizers.  Now...the food aspect can quickly overwhelm us.  What will we serve?  What will the guests be willing to eat?  How will it taste?  How much will it cost?  Do we dare even try to feed them?  (And should we warn them about the grapeseed oil and tapioca starch?)

Nevermind all that.  We've found a much better approach.  The kids have informed me that they hate the food aspect of parties.  They never even liked "real" cake that much anyways, and even though it makes their friends crazy, their friends don't care much about cake they only expect it because cake and birthday parties are synonymous.  With that in mind, we now start our plans with a theme.  This year, Bumblebee chose a garden theme.  Of course, her birthday's in March and one year it threatened to snow for the first time in over 20 this was just another excuse for us to pull out the creativity caps and plan a birthday party to remember!
The first step is to design invitations.  She wanted to hand out invitations this year, instead of just emailing them.  So we pulled out my scrapbooking papers, and traced out hexagons, added petals and cut them out.  She wrote the party details on each petal, with a big "It's a Party!" in the middle, and we folded the petals down to a pretty flower packet.
We started the party with a craft.  She didn't like the planters we found in our price range, and the birdhouse kits didn't look very practical.  But she fell in love with the little "Everything Grows with Love" signs, and then I stumbled on some bug themed magnets on clearance at Target.  Cost: $6 for 2 crafts for a dozen kids.  (Plus extra glue and paintbrushes)
After crafts, it was time to really get the kids excited.  Besides, our favorite part of any birthday party we throw is the treasure hunt.  (and who doesn't like hidden treasure?)  I told the girls that I'd invited a garden fairy to give them some treasures, but she couldn't be found.  She'd left a note leading them to the first clue...which was another note.  All in all, there were 12 clues...leading them around the house and neighborhood in search of Gardenia.  The final note apologized for missing them, but there was a fairy emergency and told them that the treasure could be found in the rose garden.  Since it hadn't been there earlier in the had a nice, magical touch.  The treasure was a little gardening kit and jumprope, and this was the big party expenditure.  (Actually, it was again quite inexpensive...I believe the treasure cost was around $16 total.)
The hunt left everyone starving.  The food was definitely not your classic party fare, but we had planned a little carrot patch out of hummus dip which was deemed adorable and although the kids didn't eat much hummus, the carrots and even a few heads of broccoli vanished.  We also put out some sunny orange slices and apple wedges, which disappeared in a hurry.
The highlight, of course, was the cake.  Instead of a "regular" cake, Bumblebee designed little loaf cakes frosted with chocolate glaze and decorated with lollipop flowers, a pinwheel and a dye free gummy worm.  The cakes were a little well done around the edges, and denser than the kids were used to.  But there were no complaints...and the gummy worms won lots of brownie points (Thank you surfsweets!)
At this point the kids were good to go, and would have been perfectly happy to be set loose in the yard for the last 15 minutes or so.  However, Bumblebee had wanted to play a few games so we rallied the guests. First, we played Pass The Flower, which consists of kids sitting in a circle and passing a fabric flower to the sound of Disney tunes.  The person left holding the flower when the music stops is "out". 
Then we played a unique party game that we called "Seed, sun, flower"  We chose a caller (birthday Bumblebee) and she called commands.  On Seed, they crouched; on Sun the stretched like a flower to the sun and on "Flower" they hopped as if being picked.  This seemed to be the favorite, and half the guests wanted to keep playing when I suggested that they take the jumpropes outside if they wanted any outside time before parents arrived.
The best news is the kids were all dragged away protesting.  The sign of a truly successful party: no one wants to go home! 

Tuesday, March 09, 2010

"Mommy," Penguin's voice is hushed, tinged with a note of horror, "Some crayons are made out of...soybeans."
Er.  Um.  Yes, yes, I'd heard about that. 
"But what about kids who are allergic?!?" 
Er...well, depending on how bad their allergy is, their parents have to research the crayons and art supplies, and sometimes provide safe ones for their kids preschool or kindergarten class. 
"Could the kids wear gloves?"
If they're old enough not to eat the crayons, and be trusted to wear them. 
"Thats why they just buy crayons for everybody?"
Yes.  Kindergarteners and preschoolers might not keep their own crayons to themselves.
"What about kids my age?  Would they just bring their own?"
Probably.  Or they could be trusted to wear gloves and not eat the crayons.  I hope. 
She giggles.  Then frowns.  "What about the ones who don't want to look like dorks?" 

Friday, March 05, 2010

Fourth trip to the pharmacy in 4 weeks.

Even though they assured the neurologist that they did have a safe medication for us, when I got there I found that the first ingredient was lactose monohydrate.  Which Penguin has reacted to in blind trials of medication.  (namely the sudafed incidents--store brand okay, name brand not.)

I give up!  Okay, I don't give up.  But I sure am frustrated.  And if I were the neurologist, I'd be frustrated too.  There should be an easier way to determine safe medications.  They can't check other headache formulas and give the doctor a list of what they have that's free of blue dye and lactose?  They have to fill them one by one?  Ugh!  And they have to argue with me each step of the way.  One argument including the fact that they do have a hospital emergency room right on sight if I want to give it a try "right now".  (Um, she doesn't have a headache this instant and if I were expecting anaphylaxis, giving her something likely to cause anaphylaxis would be cruel, unusual and criminal.) 

If this keeps up, I'm going to need migraine medecine.  I've got a headache already.

A Trip to the Pharmacy

My daughter lives with chronic migraines headaches.  Mostly, they're under control.  But over the past few months, every weather change has put her to bed.  It made us want to re-evaluate our options.  And we changed insurance companies, so we also wanted to touch base with our new doctor and bring them up to speed with our unique situation.

The pediatrician seemed nice, albeit eager to provide a prescription.  Since that's what we were looking for, we let our qestions continue to hang in the air and headed for the pharmacy.  With the misguided expectation that our questions regarding the medication would be answered there.

The pharmacy was busy.  We waited in line for an hour and when I asked for more information, the pharmacy technician looked like she wanted to cry.  I offered to return at a later time, and asked when they were least busy.

At her suggestion, I returned in the morning.  Twice.  This was only a mild inconvenience.  After all, I know we have special needs.  We will need more time than the "average" customer.  So, it's common courtesy to return when there are fewer other customers around and the personnel are free to consult their computers and start problem solving with you.  If I was willing to wait until a more opportune time, I thought they would be more apt to be helpful. 

When I returned, I asked about blue dye and lactose.  2 hours later (and several assurances of "I'm sorry for the wait, it really will only be about 5 more minutes) I was told the suggested medication was lactose free and the pharmacist needed to talk to me.  A half hour after that, I saw the pharmacist.

She handed me the medication and said "There's no problem."  So I affirmed that there was no dye or lactose.  "There's no lactose," she said.  What about dye?

She rolled her eyes.  She conceded that there was a small amount but that I should just deal with it.
I explained that this was a migraine medication and that blue dye triggers migraines in my daughter.  I didn't want to risk doubling her pain.  The pharmacist just stared.  I explained that she'd reacted to blue dye in medications before.  The pharmacist shook her head and said it wasn't a problem this time. 
I asked if there was a different option.  Perhaps a different manufacturer.  "We don't do that." I was told.  "Could I get a paper prescription and go elsewhere?"  No, they 'don't work that way'.

So then I asked what my options were.  "You have no options," she told me.  "You take the medicine."
I'm not paying for medication that will make my daughter worse.
"We'll bill you either way," she said with a shrug.
And they have.  Whether or not I pay for medication we can't use and didn't accept remains to be seen.  (I vote no, and I'm pretty persistent.)  Currently they are looking into it, and will call me back. 

Meanwhile, we were referred to a migraine class that helps individuals identify triggers (which I rudely turned down.  I regret my attitude, although I still don't feel a pressing need for the class unless it helps us navigate the pharmacy better.)  And then a neurologist.  Who is now the one dealing with pharmacy.
4 weeks later, we have no word on whether or not the pharmacy is capable of procuring safe, affordable abortive (taken only at onset) pain medication for a nearly 12 year old who can't tolerate a clinically insignificant ingredient used to color a tablet. 

Statistically speaking, dye reactions or allergies are rare.  Insignificant.  Dye is used to change the appearance of medication, food, vitamins, even toothpaste.  Blue, of all colors, is even reputed to be unappetizing.  Blue plates encourage smaller portions.  Blue kitchens reduce snacking urges.  Blue is a rare color found in nature (and what's the last really-blue fruit or veggie you ate?  Even blueberries are more purple than blue.)  And yet, it's apparently a vital component in medications. 

Which makes us statistically insignificant.  The drug manufacturers dismiss us as statistical anomalies, just numbers on papers, and certain members of the medical community do as well.  But I'm still sitting here wondering what will happen when it's something serious?  What if she needed an antibiotic?  Will we end up having to go the intravenous route because they can't get their act together?

What about me?  (selfish as that sounds)  I have a corn allergy.  The last time I needed an antibiotic for a kidney infection, it took nearly a week to get compounded.  It needed to get compounded.  What's the protocol for that in a pharmaceutical setting that doesn't recognize inactive ingredients as allergens?

Statistically, an individual is not likely to react adversely to dyes in medication.  Or corn derivatives.  But we do.  And we deserve access to safe, affordable options.  Even if the pharmacist does find that our prescriptions are the one in a million that require forethought and attention.