Tuesday, December 28, 2010

Just before Christmas, a 13 year old Chicago girl with peanut allergies headed off to school for the final day of classes, and a class party.  The teacher had made several calls to the Chinese restaurant of choice, and verified that the meal would be safe for the peanut allergic children in the classroom. 
There was a mistake.  
She never came home. 
Katelyn Carlson was taken to the hospital that afternoon, where she died from anaphylaxis. 

This story happens to strike a chord with me.  Maybe it's because Penguin's in seventh grade, too.  Maybe it's because I've spent the last third of my life learning everything I could about food allergies and intolerances.  Maybe it's just because when Bumblebee was little, and still potentially anaphylactic to peanuts, everyone rolled their eyes and told me how overprotective I was.  Or maybe it's that Penguin's been feeling more left out than usual on the social scene. 
I'm ridiculously grateful that my kids didn't show positive to the IgE portion of the allergy tests.  Which means that while reactions might make us all uncomfortable, scratchy, nauseated and stuck near a restroom for a few days (or in my case, a week or more), it means that in worst case scenario, if I get a call saying they're having a reaction, the odds are incredibly high that I will pick them up, hug them, talk to them and tuck them into their own beds to wait for it to wear off. 
I'm lucky. 
I know that I'm lucky, and yet this story still haunts me. 

I wonder why it is that food is so predominant in our society.  Why is it that we think of class parties, and we think of food?  Celebrations aren't about music or dancing or chatting it up.  They're about taste, and flavor, and treats.  In little kids, the focus is sugar...brightly colored sugar, presented in new and intriguing ways.  Crushed candy canes, melted hard candies, chewy candy rolled out like a fondant and molded into roses, or leaves, or whatever decoration is desired for cupcakes and cookies.  In older kids, savory foods aer desirable...adults look for restaurants to order from in bulk, for chips and dip and games become very food focused. 
So far this year, our middle school has hosted lunch time games such as a gum search (where a small piece of bubble gum is hidden in a pile of whipped cream and the participants hands are tied.  They race to eat their way tot he gum, and be the first to blow a bubble), cramming marshmallows into their mouths, and of course...multiple pizza parties. 
Licorice is given out as an incentive.  Brownies are baked as a reward.  Science labs have included oreo taste tests, and chip comparisons. 
Calls to the school have resulted in assurances that at this age...food really isn't present in the classroom.  And no...I don't need to bring in something comparable for my child. 
Either the admin is totally clueless, or they really just don't "get" it.  The kids have trouble separating what is important parts of the curriculum and what's just important to them. 
I think, in many ways, that's the point of food related projects.  They involve extra senses, and get kids excited about school.  They create a positive atmosphere...for the kids who can participate, anyways. 
Somehow I don't think the classmates of Katelyn Carlson will ever look at class parties the same. 

I find myself asking what can I do?  What can I do to make sure this doesn't happen in our school? 
I like food as much as the next guy.  I love fun food.  And I'm not naive enough to think that there is a perfect solution.  In my mind, the real issue is education. 
While I was looking for more information about the Chicago teen, I found an article about a young boy in Australia who died from an allergic reaction while on a class trip.  He began having an anaphylactic reaction to Beef Satay on an army cadet camp.  The army cadet officer, who was trained in first aid, stated that he had only been taught that food allergies could cause mild symptoms like a rash or coughing.  He had no idea that they could be fatal. 
Unfortunately, this perception is common here in the US as well.  And although the FAAN has increased awareness of anaphylaxis, the general public remain unconcerned.  If they are aware of the seriousness of allergies, they are convinced that only eating peanut butter with chunks of nuts in it could possibly cause a really serious reaction.  They don't believe that any of the other top 8 allergens are potentially serious or life threatening.  And they really doubt that anything NOT on the top 8 list could even cause a health problem. 
They want a magic cure. 
We all want to live in a safe bubble.  Where there is no such thing as dangerous food.  Where we can share any treat we make in our kitchen with anyone and the only thing we need to be concerned about are tastebuds. 
But that's not going to happen.  Food allergies, intolerances and anaphylaxis are on the rise.  The only way to protect ourselves is to arm ourselves with knowledge.  As much as I hate my nemesis, corn, I'm not all for banning it across the board.  I'm simply for full disclosure on a product label, including prescription medication, so that I can make an informed decision. 
As much as I want Penguin to fit in and eat what everyone else is eating...I'm not advocating that we deny the rest of the middle school their pizza parties.  But it'd be nice if they serve a fruit plate and shake things up with a top 8 friendly taco bar every now and then. 
I also want more epi pen awareness.  From what I understand, giving an epi pen requires a follow up at the hospital.  But the earlier an epi pen is administered, the less severe the reaction has a chance to become.  And if an epi pen is given in error, the risks are small.  In fact, if a person is having an apparent allergic reaction, the risks of giving the epi pen are far outweighed by the potential benefits.  Which means, it's even a good idea to have epipens on hand in first aid kits when medical help might not be readily available and they should certainly be stocked in medical rescue units. 
I'm concerned by discussions on parenting boards that indicate that medical rescue units don't always know what to do in the case of an allergic reaction.  They want to wait and evaluate and treat in a hospital setting.  But getting epinephrine into the bloodstream is essential in halting, or at least slowing, a life threatening reaction. 
I don't suppose there's much I can do about making epinephrine more readily available to those who might need it.  But I can be aware myself.  And I can educate others in the potential severity of food allergies. 
Some people stop breathing after 25 years of eating daily pb and j without incident.  They inexplicably develop an allergy to the protein. 
Others never develop more than a few hives, but hive out pretty consistently. 
And still others have varying reactions...sometimes vomiting, sometimes swelling, sometimes hives.  The fact is that you can't rely on having the same reaction, or the same severity, every time you're exposed.  And you can't be relied on to think clearly or rationally in the midst of a reaction.  You need to rely on the people around you to make good decisions, like finding and using an epi pen, or dialing 911 and contacting family members for more info.  Or simply encouraging you to relax, or get help as appropriate. 
So I guess my contribution is to be more aware.  To continue to speak up for allergy awareness.  And to remind others to do the same.  

Monday, December 27, 2010

Hassle free Holiday

This year, as you may have already guessed from my last post, was rather quiet.  I wasn't up for nearly as much energetic running around as my heart wanted me to be...and I turned most of the preparations over to the overly-excited Penguin and Bumblebee. 
They did an amazing job.  They planned and picked out the perfect gift for everyone (or so we hope...everyone seemed happy enough with their choices); they raided the wrapping stash and decorated each present with bows, ribbons and carefully chosen tags.  They created crafts to round things out, and give themselves the opportunity to give something "JUST" from them. 
We managed our annual gluten free baking experiment...a pastry crust, requested by Bumblebee, and although it wasn't what dh and I look for in a pastry crust, the kids were very happy with the resultant apple pie.  With french/dutch topping (brown sugar and cinnamon!)  We served Santa applesauce fritters (which dh was kind enough to fry up) and chocolate chip cookies. 
We skimped on the fun healthy foods, I'm afraid. 
Christmas Eve, we spent mostly at home.  My parents dropped by to drop off gifts; but we agreed to wait on opening most gifts until Christmas morning.  I just felt totally wiped out, it's hard to be social and nauseous at the same time. 
My kids were wonderful hosts, and eagerly stacked up the gifts to go; politely requesting that the "really important" ones get opened in front of them...and received the 'ooohs' and 'ahhs' that were due. 
After dark, we all bundled up and tumbled into the car to tour the highlighted Christmas light displays in our local vicinity.  We only went out for about 20 minutes, and only got out of the car once, but it was a nice way to settle in for the evening. 
The kids did stay up WAY too late.  I'm surprised Santa managed to come at all.  When I got up for a drink of water at midnight, Bumblebee startled me in the kitchen...convinced she was about to face the big guy himself! 
Somehow, though, he managed...because early Christmas morning, Penguin gently shook me awake and asked if it was time...and once she'd convinced Bumblebee and Mr. Violets to awaken as well, we slipped out to the living room to find our stockings filled with goodies, the cookies half eaten, and two brand new scooters.  Bumblebee examined hers to find it decorated with a fairy and a reference to her beloved WF.  (WF stands for Weird Fairies.  A comic strip she has created specifically to help counter the uber-popular Disney fairies.  She loves Tinkerbell...and hates that everyone else likes her to.  Bumblebee and her friends do NOT want to get lost in the crowd.)  "Santa is Awesome!" she declared. 
Of course, there followed the requisite first ride...still in pajamas!  :-)  And a few pictures for the scrapbook...although I'm not posting pj pics of my kids online.  Sorry. 
We had a very nice, laid back morning...although I did follow it with a nap...and managed to get to my in laws for a small gift exchange in the early afternoon.  Again, the kids were proud to distribute their chosen presents...and excited to hear that they'd made great choices. 
I slipped out and went back home for another nap soon after the last of the wrapping paper was stuffed into the recycle bin.  I'm not sure why I want to nap so much, but I sleep like the dead so I must be needing it. 
As I tucked the kids into bed that night, they were happy and smiley.  Although they did have one regret...Thank you notes might be a little more difficult this year, because instead of being focused on what they got from who, they were so excited about giving and worried about what their recipients thought of the wrapping and the present inside that they completely forgot to get wrapped up in the 'getting' part. 
Penguin felt that she was gifted some of the best toys EVER.  (And the amount of time she's spent actually playing with toys the past 2 days seems to support that theory)  But, she also confessed that she forgot to pay as much attention to who they were from. 
"Do you think there's something wrong with me?" she asked with a worried frown, "It's like I was more interested in giving than in what I was in getting." 
I told her that meant there was something very right. 

Thursday, December 23, 2010

Missing the holiday spirit...

Last night, as I lay in bed trying to discern the reason I'm not quite into the holidays this year, it came to me.  Although, I've felt worse some years...and been mid diagnosis some years...I've fought hard to get out,  get baking, to grasp the little things and play them up.  This year, we have our gifts together and the tree up, the elf is finding new spots to hide, the kids are giddy with excitement...and yet the baking isn't even done yet.
Every time I think of it, the nausea is still too much.
And I feel down.  Really down.
As I lamented to my husband the lack of excitement, and that all I really want to do is curl up and enjoy the days with him and the girls, it occurred to me that my lack of social graces is mostly inspired by...shame.  After 10 years...I have a diagnosis.  I'm intolerant of or allergic to corn.  I have Celiac Disease.  And the two conditions have triggered multiple other identified intolerances.  I've just been treated for H pylori.
I should feel great, right?
I'm exhausted.  I'm sleeping more often than a 3 month old.  My abdominal region feels crushed, bruised.  I'm desperately trying to eat enough to keep the scale from dipping under 90 lbs.  And at my last dr appt, the dr flitted her eyes around the room, then shrugged and buried her nose in the notepad in front of her, not even writing...just tapping. 
That tapping, the not meeting my eyes, the little frown...the shrug and release to a dr I've never met who can't see me for a month...not reassuring.  There's a diagnosis missing. 

In the past, by Christmas, I've been optimistic.  I've thought I had the answers I needed, and believed I was on the mend.  I could answer questions positively and clearly, or simply evade them by pretending I wasn't that bad.  This year, I'm lighter than I've been in at least 5 years.  I can't stop bleeding, and I'm not buying perimenopause 'nothing to worry about, just be patient'.  The nausea and cramping are really bringing me down.  I'm not playing poor me...I'm trying to simply state the facts.
I'm also worried about my daughter who has developed trichotillomania, or the urge to pluck out her eyelashes methodically.  I know this is the right diagnosis, although so far my attempts to get her help have not really led anywhere other than "Tell her to stop!"  Which, of course, I've tried.  :P
While I love hanging out with family, and I would love to have a get together, or attend one, I've felt up to either for a full...oh, five?  Fifteen?  minutes at a time over the course of the past 3 months.  I'm really hesitant to make plans because of how bad it makes me feel to leave early or change my mind last minute.  I'm haunted by memories of discomfort and reactions.  I'm withdrawing from questions because I have no answers.  And I'm avoiding...because I'm finding that after years of this whole sick-at-the-last-minute business, even those I love are starting to think I'm choosing others first.  When the truth is, I'm embarrassed that I'm still sick, that my stomach is threatening (and I'm now aware that I'm the only one fighting to keep her digestion under control), that I don't have answers and am starting to give up finding any.
(I didn't say that I'm giving up.  I'm saying that I'm starting to give up hope of finding answers.  There's a huge difference, as I found myself trying to explain to my husband.)

In past years, I've daydreamed about hosting parties.  I've enjoyed getting together, if only for an hour, with loved ones and family.  I've told myself that this will happen, someday, when I'm better.
This year, I'm not so sure. 
My goals for the new year are to get the house clean again, to get food under control, to get help from the medical community.
Humble enterprises.
I thought by now I'd be farther in my journey.  It's hard to admit to myself that what I thought was the bigger picture is only a few puzzle pieces.  And I'm wondering if the missing diagnosis could possibly explain both the food reactions and the menstrual irregularities. 
I suppose you could say that I don't want to ruin anyone else's holiday with my own frustration and shrugged shoulders.  I'm disappointed that the answers gained over the past few years simply aren't quite good enough, and I'm ashamed of where my limitations have led me, and uncertain what lies ahead.
 So this year, while I'm thinking of family and friends...I'm going to be happy that they are celebrating.  I'm sending best wishes.  And I'm hoping that they understand why I'm playing the Christmas Card friend (which reminds me...I never did get Christmas cards mailed...make that a 'New Years card friend') instead of a hostess.  I'm going to focus on what I am up to instead of worrying about appearances and what I'm not up to. 
And I'm going to try really hard not to feel guilty about it.  It's the holidays, and even if I'm still climbing my way back up from my last reaction and the bout with H Pylori, and still seeking answers, I'm going to salvage what I can...even if it means sacrificing what I wish I were doing.  I'm going to enjoy Christmas, regardless of the social aspect...or lack thereof.  And in the new year, I will find healing, and strength.  And maybe we can get together 'just because', and celebrate friendships and family without the stress of holidays as an excuse. 
If there are other readers struggling to find missing pieces and feeling discouraged, I just wanted to let you know you're not alone.  Let's band together online, and embrace our strengths...accept our weaknesses...and just enjoy the day. 
Happy Holidays. 

Thursday, December 09, 2010

I'm Grateful for Good Kids

It occurs to me that I never got around to finishing my "Thanksgiving" post.  And it's not terribly coherent, or even that relevant a week later.
But I'm still grateful.  And I've a lot to be Thankful for, any day of the year.
Wednesday of this week ushered in the first night of Hanukkah.  Bumblebee had a small meltdown over not being the ONLY one to get to light a menorah this year, although on Wednesday she was permitted.  She stayed coherent through the whole argument, though, which is a big step for her.  And Penguin stayed calm and was so sweet about the whole thing.  Thursday and Friday Penguin lit her own, smaller menorah.  At 12, it's still fun.  I'm not sure how important it will be to her at 13.
I'm still struggling with no appetite.  A little worried that I'm going to lose weight at this rate, so I try to choke down some peanut butter and chocolate when I realize it's been awhile.  My body doesn't object too much as long as I don't eat much at a time, and it's more calorie dense than broth, or rice, or baked fruit.
The kids are filled with the holiday spirit.  As am I.  Although waves of nausea and persistent debilitating cramping make it difficult to anticipate the 'togetherness' aspect.
Maybe it's selfish of me, but I want to spend time with people I love not thinking about my stomach.  At this point, being sick over the holidays seems like a tradition itself.  But so is HOPE.  Hope that things will improve.  Hope that we're going up an easy slope, and the end is just in sight.  Hope that recovery is waiting in the new year. 
Today, I had high hopes for the weekend.  There were several places on the agenda...a promise to take one child to the mall, another to a local park, and a small exhibit I didn't want to miss.  Both evenings are booked for spending time with loved ones.
As you might deduce from the fact that I'm typing rather than playing, this morning has me curled up with a heating pad.  The kids are cheerful enough, they showered me with hugs and kisses.  They told me to sleep.  And I'm listening to them playing happily in the living room.
While I absolutely HATE that I'm in here rather than out there (or even better, in the car listening to them in the backseat) I love that they are so understanding, so flexible.  And I'm grateful for the chance to parent them. 

Wednesday, December 01, 2010


Tonight, as I tucked Bumblebee into bed, she asked for permission to watch TV if she got up really early.
Well, of course, I told her that she could certainly turn on the television if it would get her out of bed more than 5 minutes before we need to leave for school!  (Yes, I wake her and shake her and tickle her and toss her clothes to her and remind her what time it is in regular intervals between when I wake up and when she stumbles bleary eyed to the front door.  And yes, we've tried putting her to bed earlier.)
Good, she told me.  The PE teacher told us we need to watch more TV.
Now, I'm all for progressive learning.  And I'm not opposed to a little television, I even think that it can be *gasp* educational in certain amounts.  But...the PE teacher suggested more TV?  Really?
Uh, huh.  Oh, and we're not supposed to watch PBS or movies, she adds.
This has me suspicious.  I'm a little curious as to what else is ON TV, since we don't have cable and rarely even watch broadcast stations.  So I ask her to elaborate.
"We need to watch something with commercials," she explains, "So we have time to do push ups."

I wonder if the PE teacher expected any of the kids to listen to her advice and hear "You need more screen time!!!"  Probably not.  But I may mention it, anyways. 
And Bumblebee?  She's been informed that while she is welcome to watch a little TV now and then, we're not going to carve TV time into our day to help her make time for push ups.  She can do push ups while she's dancing to "The Dog on the Front of the Tag" or waiting for Webkinz to load.  She can do push ups while she's draped over the kitchen chairs complaining that dinner takes too long.  She can do push ups instead of creating a new railroad layout.  She can do pushups instead of pulling out the Littlest Pet Shops when watching a movie. 

Bumblebee disagrees.  She's pretty sure she's supposed to watch more TV.  And stay up later, too...

Stress + Stress

About 18 months ago, July of 2009, I posted about the family stomach bug.  The one that the kids seemed to eventually recover from, but I just never really did.  Well, eventually I figured I was probably close to normal.  What is normal, anyways?  Other than an absence of being 'worse than usual'.
It turns out that somewhere between then and now, I developed a bacteria known as H Pylori.  Ironically, this bacteria was originally called "stress" and is the number one cause of ulcers.
Diagnosis was really easy.  Luckily, my dr did think to run the blood test and it was positive.
The next step should be relatively straightforward.  A triple whammy attack of 2 antibiotics and a proton pump inhibitor.
Of course...I had 2 questions.  What's the PPI for?  And "Is there corn in that?"
The answers were not so straight forward.  I'm uncomfortable that the answer to "What's the PPI for?" was 'That's the standard treatment, we find it works.'
I know it's just me.  But I like to know WHY.  And the answer of "You just don't understand" gets under my skin.  Of course I don't understand!  Why else would I ask?
And then it comes to corn.  The list is quite long.
It encompasses a large number of potential names.  I don't react to the protein.  I don't know why.  I'm not willing to study it too much further...not on myself.  Not after dealing with it and learning more, and accepting what I've learned over a full 7 years.
7 years.
It's a long time.  It's been a long process.  You'd think after so many years I'd understand what was going on.  I'd be able to navigate any system.
But I didn't count on a system that doesn't recognize or respect the acknowledgment of prior doctors, of unusual situations.  I spent 4 days visiting with the pharmacy.
I was reassured.  Placated.  Confidently soothed.  But I didn't feel validated or respected.
That's scary, and it makes me feel rebellious. 
But the bottom line was that the ER was accessible.  If I end up there they can do something.
There's nothing else they could offer.  The dr says to talk to the pharmacist, the pharmacist says the doctor makes the call.  They called the manufacturers and asked if corn was used in the process.  They couldn't tell me if they ascertained "any corn derivatives" or if they specified starch as well as protein.  The stress of going to the pharmacy on a daily basis for less than 10 minutes with the pharmacist before they walked away was getting to me.
The end result is that the decision was up to me.  I could trust them, and take medication that may or may not help.  And was likely to make me nauseous and crampy by it's very nature.  Or, I could not take it.
H Pylori is common.  It doesn't always cause symptoms.
But I'm symptomatic and I'm getting depressed.  (from the symptoms...seriously?  If you lived on rice because your stomach was volatile, you'd probably get depressed, too.)   So, I took the meds.   At least, I took them until I gagged on them, and couldn't keep them down.
Then I stopped taking the one I was most suspicious of (omeprazol, the PPI) and continued...much more successfully...with the antibiotics.  I figured that vomiting undigested meds wasn't helping me any.  So taking the antibiotics alone was better than nothing.
My colon still feels like it's been beaten to a pulp.  Mostly because of the charlie-horses that set in not long after the meds took effect.  Typical corn response, for me.  I'm still having occasional tightness of breath, but that was one my complaints before...so who knows if it's corn related?  I have chills, but it's pretty cold.  Still struggling with nausea and lack of appetite.  The itchiness has finally subsided.  (Mostly.)  I don't seem to have actually hived out.  I've slept 16 hours a day (at least) for the past 2 weeks and I'm still tired. 
But I'm thankful that the antibiotics are over, and I'm crossing my fingers that once the corny reaction finishes working it's way through, maybe I'll be able to enjoy the holidays.
It seems like I've missed spending time with family and friends a lot the past few years.