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Archive for the ‘Allergies’ Category

Both Sides of The Fence

Note: I realize this topic gets people riled up – all I ask is that you read to the end before commenting.  Thank you!

—–

I’ve kept my mouth shut and my fingers still as the vaccination battle has raged and burned anew here in California and elsewhere across the nation over the past several weeks.  I’ve read articles, observed heated debates, seen some people show compassion and others spew hateful venom.

I read the heartfelt plea for parents to immunize, penned in the 1980’s by beloved author Roald Dahl who lost his young daughter to the measles in 1962.  My heart hurt when I saw photos of the infant infected with measles by unknowingly being in the waiting room of a doctor’s office with an unvaccinated child whose parents didn’t know what was wrong.

Sitting silently here at home, I felt empathy for both sides of this passion-filled argument because I am a mother who is not at all sitting on the fence between the two – I occupy both sides at the same time.

My eldest child is fully vaccinated and my youngest is not.  With a family history of having severe reactions to high doses of medications, ~ For example, I went into anaphylaxis from a large dose of Benadryl at age 5, and ever since, have been allergic to the medication doctors give in order to control allergic reactions.  Irony, anyone? ~ I chose to break 11 year old Ali’s immunizations into one and two dose applications over a series of appointments when she was little.  Sure, it meant more trips to the doctor and more co-pays, but her doctor, who had also been my physican for a number of years, agreed that it wouldn’t hurt, especially if it calmed my worries and kept her safe.  It seemed to be a very reasonable compromise between vaccinating and not wanting to harm my child with overexposure.

When Blythe came along, our insurance coverage was with an HMO that would not allow me to break up the inoculation schedule.  I offered to pay for the office visits myself and even the vaccinations, if necessary, but they refused.  When I then said I would take my two month old baby to see our former doctor and just pay out of pocket, they wouldn’t let me leave.  By the time they finally coerced me into allowing them to give her the full set of shots, the room was filled with several nurses and every pediatrician on staff, all of them telling me I was endangering my child.  Although they never threatened to call child protective services, they let me know that they all felt my parenting was not only questionable but negligent.

On that day, I allowed medical professionals to bully me into ignoring my maternal instincts, and I have made sure to never let that happen again.

The problems that began shortly after that couldn’t be directly tied to the vaccinations at the time.  Blythe was fussy and had a weird rash, she had screaming fits, her body would tense up and her eyes would bug out, but then she would be fine.  The doctor’s office said she had colic and eczema, and when the majority of the symptoms faded after a week or two, I felt okay about letting them give her the full course of shots.  Crisis averted, I was just an overprotective mother worrying for nothing, right?  Little did I know that her Central Nervous System had reacted to the preservatives in the vaccines and was on the verge of waging war on my sweet baby’s body with the slightest provocation.

I delayed Blythe’s second set of immunizations by a few weeks because we were celebrating my 30th birthday with friends and family, and would be traveling.  At 5 months old she was still having occasional screaming fits, but was otherwise a healthy, happy baby, developing on or ahead of schedule in every way.

And then.  I took her for her second round of vaccinations and our world spun upside down, around and in any possible direction other than right side up.  It remained that way for the next three years and I lived every moment of every day with the knowledge that I allowed my child to be injected with something that acted as a catalyst for more pain, more heartache, more turmoil than a child ~ any child, mine or yours or that kid over there, even the one who acts like a complete asshole half the time ~ should ever have to endure.

My point is this: We all love our children.  We want the best for them, to keep them safe and healthy and happy. The great majority of us would never knowingly do anything to cause harm to our babies.  Only two percent of the population has an adverse reaction to vaccinations, most of them mild, and that is an amazingly low rate, especially when we consider how many people, scores of them children, died or had long term complications from the illnesses that these vaccinations not only protect against, but have nearly eradicated in our modern world.

But.  But…  When your child is in the two percent; when it is your child whose body is tortured every day from within and there is nothing you can do to help or soothe; when your softest touch brings her pain; when her health problems increase with regularity and a flu that any other child would get over in 24 hours is life threatening; when she reaches an age where she can speak and describes the way she feels as being on fire inside; you can’t help but relive that moment in your mind – that moment when you held your happy, healthy baby on your lap and watched her get her vaccinations ~ created to keep her healthy! ~ and as much as you want to, with every fiber of your being, you know that you can’t take it back.  You can’t travel back in time and do it a different way, or not do it at all, because even that would be a better choice than this living hell; you just watch your child live with the pain.  And you?  You live in fear because danger lurks everywhere, threatening to take her from you without a moment’s notice.

Close your eyes for a moment and imagine that life for your child, and for yourself, and before you come back to reality, take a deep breath and be thankful that your child is among the 98 percent.  You don’t ever want to know what it’s like on the other side.

If you were to meet 7 ½ year old Blythe today, or for those of you who know her, to just observe her now, you would never suspect that she is the child I described above.  Believe me when I tell you that I gave the slightest, most gentle description of what life was like for her.  For us.

B face

Blythe is among the few who have been able to make a full recovery, after some other underlying health issues were discovered and managed.  She is, once again, the happy, healthy child I held in my arms so many moons ago.  In the years now that she has been well, I have made sure to thank my lucky stars on a daily basis for this opportunity to have a second chance at keeping her healthy.

I’ve wrestled with the choices several times over the past few years – should we take a chance and try to inoculate her again, now that she’s healthier, older and stronger?

Would it be safer for her to have a known thing – the vaccinations – in her allergist’s office so that we could hopefully deal with the possibility of anaphylaxis quickly enough to keep her health from plummeting back down into the abyss?

Or would it be safer to hope that she won’t come into contact with the illnesses the vaccines protect against and not risk purposefully pushing her into that fiery inferno that we both remember so well, that still haunts our dreams, even now?

But here we are with a measles outbreak.  Blythe is still unvaccinated and is at significant risk.  Her half-sister is three months old, too young to be vaccinated, and we have her to think about, as well.

I can see both sides of the argument.  The protective mother of a child who medically could not be immunized rages at the fact that parents who chose not to vaccinate for non-medical reasons have allowed our herd immunity to break apart in such a way.  I am relying on you, village, to help protect my child and you are doing a shitty job of holding up your part of the bargain!

On the other hand…. I do know what an adverse reaction to vaccines can bring.  I have seen it and lived it and watched my child suffer, and wished a billion times that I hadn’t let her be fully immunized that day.  If I had known what could happen, ~ what could really, really happen ~ to my child, I would have feared it, too, more than anything I’ve ever feared in my life.

Which brings me to my final point.  Blythe and I, along with the other parenting figures in her life, have decided that she needs to be vaccinated.  At this point in time, the risk of catching and/or spreading a life threatening disease is too great.

Can I take a moment to tell you how wonderful and brave my 7 year old daughter is?  And can I also tell you that for the past few weeks, as we’ve discussed this choice amongst ourselves and with her doctors, I have not been able to take a full, deep breath because my heart has taken up residence in my throat?

I am terrified.  I know what can happen.  I didn’t read it in an article or see it on television or hear a story about someone’s roommate’s brother’s friend’s baby.  I saw it with my own eyes and lived with it.  And yet, we are going to vaccinate our child because it’s what’s best for her, and for the rest of the population.

Talk about taking one for the team.

For those who have not vaccinated out of fear of what may happen, or because of previous adverse reactions, please know that there are Pediatric Allergists out there who have developed allergy tests for each and every vaccination.  Blythe will undergo an allergy test prior to every inoculation, which will be administered in the allergist’s office, one at a time.  If the tests indicate an allergy to any one of the traditionally used vaccination formulas, though, we still have options!

Organic vaccines with no preservatives (which are what cause most problems) are now available, and although they can be quite expensive, an allergic reaction to the test means that insurance companies must cover them.  They are mixed and kept on ice as they are overnighted, and must be administered within 24-48 hours of their creation.  Today, right now, in this privileged, scientifically advanced world we live in,  there is no reason for healthy children* to remain unvaccinated.  Research and find a way.  If I can do it, you can, too.

When I broke the news to Blythe that the allergist’s office could absolutely get her caught up on vaccinations and could also make certain she wouldn’t have an allergic reaction (as opposed to attempting to treat a possible reaction), she gave me the biggest smile I’ve ever seen, threw her arms around my neck, and together, we cried.

Of all the tears we’ve shed over this battle in the past 7 years, at last… we are crying tears of joy!  The world is finally hers.

B back

*I specified healthy children because there are some with medical issues and compromised immune systems that would not be able to handle immunizations of any kind.  These are the kids we need to help protect!

Halloween : Special Needs

My girls went trick or treating last night, just like the majority of kids in industrialized nations around the world.

This year was the first time that Blythe, at age 3 1/2, willingly participated. 

In previous years she either had no interest at all, or completely hated the festivities involved.

It’s significant for her, a child with severe food allergies and Sensory Processing Disorder, to willingly participate in something that puts her so far out of her comfort zone.

She can’t eat any of the candy she collects.  I buy special corn-free candy for her beforehand, and trade her for her stash so that she can have some treats.  It amazes me that she doesn’t mind handing over her goodies.

Until a few months ago, her SPD kept her from appreciating the joy of dressing up.  She was terrified of costumes of any kind.  Wigs, masks, feathers, anything with texture freaked her out to the point of  a complete meltdown.

Last year, in preparation for Halloween, I spent months choosing a costume for her that resembled her beloved footy jammies, but in the end… there was no costume. 

She wore her footy jammies with a name tag that read, “Hello, I’m STUBBORN” and you wouldn’t believe the laughs she generated.

My kid was terrified of the costumes, completely intimidated by the idea of wearing something ‘different’ and couldn’t even eat the candy she collected… in my mind, I thought, “What’s the point??” 

Halloween was a nightmare, to put it mildly… but I wasn’t about to deprive Alison of her night of fun when she willingly gives up so much for the sake of her sister on a regular basis.

This year, though, was different.  Blythe actually showed an interest in choosing a costume and was set on being a ghost.  Which changed into a very, very strong desire to be Princess Ariel… something rather out of character, but who am I to say what she can or can’t be??

She wore her Princess costume, at first over footy pajamas (of course) and then over her favorite outfit.

She trick-or-treated for awhile with her sister and friend, and then decided to help me and her friend’s mom pass out candy.

She never complained, not a single time, that she couldn’t eat the candy.

She loved her costume, and cried when it was time to take it off and go to bed.

What a difference a year makes.  My girl…. she amazes me every single day.

Every. Single. Day.

Decadent Whole Wheat Chocolate Cake

After my last post about real food vs what passes for food sometimes, I thought I’d post a recipe of one of our favorite indulgences.  Because, yes, I do think it’s good for my kids to be exposed to sweets so they won’t go nuts for them when they’re older, but it’s going to be on my terms for as long as possible!

I’m of the opinion that even treats can be good for you – or if not necessarily good, at least better than what is standard in our fine, fine country these days.  My kids love the healthier versions of “junk” food that I serve them as a treat, and I think you will too!

I first started experimenting with recipes for “wacky cake ” (cake made without egg or dairy) about 2 years ago, right after we learned of Blythe’s corn and egg allergies .  I’ve finally come up with a recipe we all love, which happens to be free of egg, corn, soy and dairy – and it’s even whole grain, to boot – while still managing to be utterly delicious.

I made this cake and frosting (which isn’t dairy-free, fyi) for my husband’s birthday yesterday, and it was a huge hit at our table.  Try it!  I think you’ll be surprised at how good healthy can taste!   

On a side note: ignore all product specifics if you don’t need to make the cake safe for the food allergic, any old stuff will do – other than the whole wheat flour and cholesterol-free oil, that is!  And, as always, if you are food allergic – double check the product labels in case of changes.

Dre’s Decadent Whole Wheat Chocolate Cake (or Cupcakes):
*Corn – Egg – Soy & Dairy – Free*

Ingredients:

*  1 1/2 cups Wheat Montana Prairie Gold 100% Whole Wheat Flour (trust me – there is a huge difference between using this particular whole wheat flour and others I have tried. Use it.)

*  1 cup  Florida Crystals Natural Cane Sugar 

*  3 Tablespoons unsweetened natural Cocoa (I use Whole Foods  or Trader Joe’s brands)

*  1 teaspoon of baking soda

*  1/2 teaspoon fine-ground sea salt

*  1 teaspoon organic vanilla extract

*  1 teaspoon organic distilled white vinegar

*  5 tablespoons Capullo cholesterol-free Canola Oil

*  1 cup of cold water

Directions:

Preheat your oven to 350 F.  Spray your cake pan (I use a 9″ round springform pan) with Pam Organic Olive Oil cooking spray

**If making the frosting as well, put a medium sized glass bowl and your beaters in the freezer now, too.**

In a large mixing bowl, mix flour, sugar, cocoa, baking soda and salt.  With a medium/large spatula, make a large hole in one third of the mixture.  Turn the spatula over, and using the stick end, make two smaller holes in each of the other thirds of the mixture.  In one small hole, pour the vanilla.  In the other small hole, pour the vinegar.  In the large whole, pour the oil.  If it looks like an odd little face staring up at you, you’re doing it right.  Pour the cold water over the top and stir until moist.

Pour your mixture into your pan, and bake for 25 to 30 minutes, or until the cake springs back when touched lightly.

For cupcakes, bake 15-20 minutes – mine are usually perfect at 18 minutes exactly.

When done, place cake pan on a cooling rack, remove outer springform and let cool completely before frosting.

Dre’s Chocolate Whipped Cream Frosting
*Corn – Egg & Soy – Free*

Ingredients:

*  1 cup Horizon Organic Heavy Whipping Cream

*  1 teaspoon organic vanilla extract

*  2 1/2 tablespoons Florida Crystals Natural Cane Sugar

*  2 1/2 tablespoons unsweetened natural Cocoa (again, I use Whole Foods  or Trader Joe’s  brands)

You remembered to put your medium sized glass bowl and beaters in the freezer about 20 minutes ago, right?  Go ahead and take them out now.  Pour everything into the bowl and start whipping with your mixer on a medium speed.  Beat until stiff peaks form, but be sure to stop before it gets “gummy”.  Gummy frosting still tastes good, but it’s harder to work with.

Frost your cake however you’d like and ENJOY! 

Your family won’t even realize they’re getting a full serving of whole grains with every slice.  Now that, my friends, is a tasty treat!

Recovery

Blythe has been home from the hospital for over two weeks now.

She’s much better, physically.  Emotionally, she and I are both still feeling pretty raw.

She’s been having nightmares about the hospital. 

When she was there, bad things happened when she went to sleep.  And so, even though she’s home and safe, she fights sleep with all her might.

Her first few nights home, she woke up screaming every few hours, and managed to lose her voice. 

Lately, she’s been asking us to “stay” at bedtime.  And so we do.

We stay up half the night, and then wake up a couple of hours later when she crawls into bed with us.

We snuggle her and tell her she’s home, and safe. 

*****

I dream, too. 

My dreams are so vivid, that I wake up unable to breathe.

I’m afraid. 

I wish I could say I’m not, but I am. 

Today, I feel incapable of protecting my daughter. 

I try so very, very hard. 

But danger – whether it be in the form of corn or a virus – lurks everywhere.

I am overwhelmed by the sheer magnitude of what we’re fighting against.

It’s us against the world, it seems, and I’m so scared.

Terrified, really.

She’s my baby, and she’s counting on me to keep her safe.

But what happens if I can’t?

The answer to that question… it taunts me in my dreams.

Blythe in the Hospital: Day Two

We got through Day One in the hospital, and as I watched the sun stream through the window on our second morning, I truly felt the worst was behind us.

I was wrong.

Blythe was talking, responding, and feeling hungry – all great signs that her health was improving.  Her blood sugar was extremely low, because she was unable to receive “normal” IV fluid, which contains dextrose (and therefore corn) for that very reason.

It was important that she start holding down fluids so that she could get her blood sugar regulated. 

We started with ice chips, which came right back up.

The doctors, nurses, and pharmacy techs were researching like crazy to find an anti-nausea medicine that didn’t contain corn.  There are few choices, especially for children, and they never found one.

Good to know, for the future.

In the meantime, I had my mom bring in corn-free popsicles, which were a huge success.



We all breathed a sigh of relief, putting our hopes for good health right there on that popsicle stick.

But she couldn’t sleep.  She began to get agitated.  She had screaming fits.

She wanted to go home.

I didn’t realize it at the time, but her behavior was showing me signs that she’d been exposed to corn. 

It’s my job to protect her, and I do so, fiercely, every moment of the day. 

I watched the nurses like a hawk, questioning everything they brought in, making sure they’d washed their hands, bringing only my own approved popsicles, juice and broth.

How could I have known?  Sysco brand cups, the type the hospital supplied for her popsicles, juice and broth, contained corn.  In an effort to be more eco-friendly (which I obviously support), had replaced the polystyrene in their products with corn.

When kept cold, with the popsicles and juice, the corn in the cups only leeched into her system in minute amounts.

But when the nurse warmed her broth in the cup right before bed, the heat released a deluge of corn, right into my baby girl’s mouth.

Thank goodness, she only drank an ounce before falling asleep next to me, exhausted.

Soon, she woke.  Coughing.  Crying.  Screaming.

I buzzed the nurse and asked for motrin.

And then I turned on the light. 

Her face, my beautiful baby girls’ face, was distorted and swollen, and she was clawing at her mouth.

I buzzed the nurse a dozen times, afraid to leave for even a moment.

I grabbed Blythe’s Zyrtec out of my purse, but the nurse took it from me, saying she needed the doctor’s approval first.

I told her she’d better go get that approval, NOW, because it wasn’t going to be pretty if we didn’t stop the reaction. 

She ran for the phone.

Blythe was screaming.  Crying.  Flailing.  Kicking.

She yanked off her heart monitor and threw herself against the rails of the bed.  Clawed at her face.

The nurse ran back in and said, “OK!  Do it!” and I could see that her hands were shaking as she handed me the bottle of medicine. 

I couldn’t get the Zyrtec into Blythe’s mouth, she was thrashing too much.  The nurse tried to hold her down, but most of it spilled. 

We waited a minute.  Two.

I looked at the nurse and said, “It’s too late.  She needs Epinephrine, and she needs it NOW.  I have an Epi-Pen in my purse.”

“I need to call the doctor and ask,” she replied, and ran from the room.

Blythe somehow ended up on the floor, throwing herself repeatedly into the tile, into the wall, into my legs. 

“Mommy HELP ME!” she screamed as the hit herself in the face, neck, chest. 

“I’m trying, baby,” I whispered, reaching out for her.

She smacked my hand and went into the bathroom, trailing her IV line. 

Three more nurses arrived and just watched my baby thrash around in pain. 

I screamed at them, “Get the Epinephrine!  Her insides are on FIRE, don’t you understand?”

The answer I got infuriated me.  They told me if she’d stopped breathing, they’d have given the
Epi to her immediately, but since she was breathing, they had to wait for the doctor.

Blythe started tearing the tape off of her IV.  “It HURTS!” she screamed.

I wrapped my legs around her body and held one arm still as a nurse tried to save the IV.

Blythe’s body had become incredibly strong, and I struggled to hold her down.  She screamed and thrashed against me, begging me to make it stop. 

The nurse pushed the call button over and over and over again, and told me she was so sorry.

Finally, the charge nurse arrived with the Epinephrine and, tears streaming down my face, I lifted my red and swollen child up for them to put it into her IV.

It took every ounce of strength I could muster to keep from dropping her while she flailed in my arms.

And in a moment, finally, it was over.

She collapsed against me, weeping.

I sat on the hospital bed, my arms around her, and sobbed, “Thank you”.

To Blythe.  To the staff.  To God.

They left us alone, and we lay there together, both of our tears falling down her face.

Blythe’s nurse came back in. 

She told me I was strong. 

She told me she was sorry. 

She told me she hadn’t believed me when I told her Blythe was having an allergic reaction, that she just thought Blythe was throwing the worlds biggest temper tantrum, and had maybe hit herself in the face to cause the swelling.

She told me she’d never seen anything like that, and that it had scared her.

For hours we lay there in the dark, unable to sleep after what we’d been through.

And then, wrapped up together, Blythe and I finally fell asleep.