Saturday, March 31, 2012

granola love

granola3

I love granola. It's got just the right amount of toasted nuttiness and sweetness one looks for a morning meal. The one good thing about making your own granola is? Well, you can add just about whatever you love AND control the amount of sugar since we all know how unhealthy this 'meaning to be healthy' cereal can get.
So I've been meaning to post this for quite some time now. I actually forgot the recipe/can't find it so sadly I won't be posting the exact one. I was going to wait until I made it again and go from there but I figured my blog just maybe needed a new post. I did however find a pretty amazing recipe that's quite similar here.

granola1
granola2

Thursday, March 29, 2012

The First Planting....

Freshly transplanted leek start blowing in the wind
The first crop to go into the ground this season are leeks.  An odd first choice for early crops as usually thoughts of peas and brassicas jump into the mind long before any alliums, but that's what we had, so that's what went in the ground.  Chris (the Americorps Garden Assistant) was able to secure a good amount of starts and they all went in the ground hopefully enjoying the sun, rain and wind that took turns playing weather yesterday.    

I'll admit they're in a little more compost rich soil than I would prefer.  We're doing all the soil prep by hand at this time as the soil is much too wet to till.  At the Tuesday night workparty, we had a great group of folks weeding this new row and then I amended it with wonderful Allied Waste compost (Thank you Allied Waste!).  The pile was a bit soggy though so trying to spread out the compost and work it into the soil proved a bit more difficult than I was hoping.  Thus I hope our leek starts aren't too shocked or burned by the amount of compost they are in! 

Overwintered kale sharing the row with our recently planed leek starts
One row of crops in, only 95 more rows to go!!!  That being said, we'd love to have (and honestly, could really use) your help every Tuesday for our SAGE work party starting at 4pm! 
  

Tuesday, March 27, 2012

"Weed the Peanut Kids Out of the Gene Pool"


Hey, ignorant (probably teenage) comment troll.

Yes, I'm talking to you. You're the one commenting on the Anderson Cooper article about the kid with EoE who can't eat, right? You've written things like:
Charles Darwin was right..... Only the strong survive. 

Just put the lil guy down. I'm sorry but thats natural selection, he's not fit to live. 

When the offspring cannot consume the species' diet, they typically do not survive long enough to reproduce. Nature takes care of the polluted gene pool swiftly. 
Your comments really piss me off, but probably not for the reason you think. See, my kid has been allergic for 17 years now so I've seen my share of haters. Haters gotta hate and I know that. I've dealt with the Facebook groups calling for his death. I've heard the stories about classroom bullies who think it's funny to spread peanut butter on his backpack. I'm over that part of things. I don't profess to understand why you need to go through a stage of public hating, but I don't internalize your hate anymore.

Except with statements that are factually inaccurate and short-sighted. Then I get pissed.

Food allergies are not a genetic disease. Let me say it again. Food allergies are not a genetic disease.

In case you didn't learn this in school, changes to the genetic code take many hundreds of generations to happen. Food allergies have DOUBLED in just the last 10 years. Right now, one in 13 kids has a food allergy and it looks like the number is continuing to increase.

Food allergies are a disease of the immune system. Unlike the genetic code, the immune system can adapt to changes in the environment in a generation, but it can only go so far. These kids are not genetically deficient. They are a warning. They are the canary in the coal mine. Something has changed in our environment that is affecting ALL of us. The "peanut kid" may have an allergy as a result -- but that doesn't mean that YOUR immune system isn't also reacting in some way you can't see. Whatever's affecting the peanut kids is probably affecting you as well.

Food allergies are just the tip of the iceberg. All diseases that affect the intestinal tract are rising at an incredible rate. Crohn's disease. Asthma. Autoimmune disorders like lupus and diabetes. Cancer. Even if you're not in the 25% of the population prone to allergic disorders, you should understand that cancer could be in your future. Doesn't it seem like a good idea to you to figure out what the changes are in our environment that are leading to such a dramatic increase in all these diseases?

Plus, I know you think this will never touch you in the future, but I can almost guarantee it will. Look at that statistic: 1 in 13. Food allergies have doubled in the last 10 years. What if they double again? Right now, there are, on average, two allergic kids in every classroom. What if it's four by the time you have kids? This is all fun and hate games until you have to look at your kid (or niece or friend's child) swelling like a balloon and gasping on the floor.

Just think about it. That's all I'm asking. And, if you gotta hate...hate a little smarter next time.

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Friday, March 23, 2012


Fans and Friends,
What a great way to welcome spring and start the growing season!  March 20th, our first Tuesday evening work party, was a beautiful Oregon day, full of rain and fun; perfect for gardening!
Lower row of SAGE garlic unhappy with all the water we've had this March!
A great big "Thank You" to all the wonderful people (Paige, Bryan, Brian and John) who came out and braved the precipitation for our first Tuesday work party of the year.  We even had some friendly ducks swim by and help us (you can see from the photo that we're not joking when we say that the ducks could literally swim by us!)
After spreading a whole pile of mulch (about 6 yards worth!) and weeding the garlic beds that weren't underwater, we concluded the evening with an excellent pizza dinner.  On site we have a cob pizza oven that quickly cooked our pizzas that were topped with fresh kale from the garden.  The dough was generously donated by Fireworks, the restaurant located directly south of the south co-op.

Fire roasted pizza will frequently be featured after Tuesday evening work parties.  Volunteer throughout the year and enjoy the seasonal diversity of toppings we'll feature from the garden. 
As an open invitation to all of our friends, family and neighbors we will be holding open volunteer evenings at SAGE until November. We'll meet every Tuesday at 4pm and work until dusk (saving some of that daylight for eating fire roasted pizza!). 
Everyone is welcome and encouraged to join us in the garden (rain or shine)!  

See you all soon!
Frazier Thurman
CEC Community Outreach Intern

We're In


Yikes! A few weeks back, I wrote an entry about the FAHF-2 clinical trials going on here in Chicago. My husband, son and I have been debating back and forth ever since about participating. There are several reasons it's a complicated decision:

  • Study participants are required to swallow 30 pills each day. That's tough for a kid who struggles to swallow one!
  • The commute time and time out of school is pretty significant.
  • As with any clinical trial, there's a chance of being in the placebo group and we're not guaranteed access to the medication after the trial if we are (although it sounds like they will try to make it available to all participants if the trial goes well). 
There's one last biggie though: there are two direct challenges required, one before the dosing starts and one after to demonstrate the efficacy of the drug. That means they're going to give my kid peanut and let him get to the point where they're absolutely sure he's reacting. Wheezing. Vomiting. Drop in blood pressure. They promise they won't let it go too far...but it has to go far enough that they're certain it's a real reaction. It will be done with an IV in and rescue equipment available, but there are still no absolute guarantees.

My son is a truly awesome kid. We talked a lot about the risks with all this and he really wants to go forward with  it. He's not even as hopeful as I am that this may be the real cure -- he just thinks it's the right thing to do.

This is going to be short because I want to make sure the researchers are good with me blogging on the topic. We have our consent visit coming up next month, so I'll post more after that if it's still appropriate.

FYI, the study is apparently filling VERY quickly, so if you're in Chicago, now's the time to make the call!

Tuesday, March 20, 2012

My Perfect Comfort Zone

I'm a bitch. I admit it. (It's right up there in the masthead if you look.)

When it comes to food allergies, I seem to have a little judging voice in the back of my head. The one that says things like:
Are you KIDDING me? The kid has 20 allergies? That cannot be possible.

Four episodes of anaphylaxis this year? Clearly they're using that Epi-Pen for panic attacks.

You're not going to let your kid go to a birthday party? Are you going to keep him away from the supermarket, school and the workplace too?

Anaphylaxis to airborne peanuts on an airplane? Really?

You see, I have a perfect comfort zone. I know everything there is to know about allergies. Don't you?

Some of the cruelest comments I've ever heard about food allergies have come from other mothers with food-allergic children. When our comfort zone is threatened, man, the claws come out! So why do we do it?

I think it's because we believe our comfort zone sits smack between two really untenable options:



We have to believe that our unique set of precautions will be in that magical middle ground. It's also natural that we would defend that middle ground, since the stakes are so high.

To complicate things, there are a LOT of people in the world who think they have an IgE-mediated food allergy, but who do not. There's no gold standard to tease out these people. Even allergists can have difficulty diagnosing some allergies, and cell-mediated intolerances can be very debilitating.

It matters because people take food allergies less seriously when the community is full of perceived "fakers." On the other hand, because we all have different needs, symptoms, triggers and thresholds, we can all look like fakers to someone else whose formative experiences have been different than ours.

In the end, it's easy to end up lonely, even surrounded by other parents of children with allergies. Their flavor of allergic response can be so different that it's hard to find common ground. Contact reactions or just ingestion. Hives or no hives. Single allergens vs. a host of allergens. Exquisite trigger threshold vs. no problem with minor cross-contamination. Each of these responses changes completely the choices we make to deal with our kids and the world around them. There are millions of children with food allergies, yet each of them has a unique condition.

I hope I'm becoming less judgmental as I move through this journey. It's easier to let go of judgment when I acknowledge the fear that's behind it. And, for those days when I run into a parent who's actually bitchier than me, I keep a little sign around:


What's the nastiest thing someone's ever said to you? Add it to the comments!

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Monday, March 19, 2012

Competitive Parenting And Blue-Ribbon RAST Scores

Several years back, my family had the opportunity to participate in a Children's Memorial food allergy benchmarking study. (There's more about that in my post on FAHF-2 here if you're interested.) One of the really great things about the study was that we often got to meet other food-allergic families in the waiting room, awaiting their turn for poking, prodding, scratching and blowing into tubes.

Most were great, but I do remember one mother leaning over and asking "what is your son allergic to?" I rattled off the list of allergies. She then said "My daughter is allergic to cashews. Deathly allergic. She has a RAST score that's over 100!" I must have looked puzzled because she followed up with "It's off the charts!"

I was feeling pretty weirded out at that point because she was so ebullient about it all, but I waded in anyway. "You do know that RAST measurement has nothing to do with the severity of an allergy, right?" I said. "Its real purpose is for initial diagnosis, and then to determine the pattern of a child's immune response."

She bristled a little at this point. She was clearly not going to give up on the idea of her daughter being a outstanding test taker. "That's not true," she asserted. "The higher the number, the more allergic the child!"

((sigh)) What is it about our competitiveness with our children that makes us extend it even to their medical test scores? I was not a bitch that day - I let it go - but it's bugged me ever since because it's a very common misconception in our community. In the interest of getting it out of my system, let me explain what I know about RAST testing.

When a person becomes sensitized to an allergen, the body produces a "soldier" molecule called an antibody that grabs on to the allergen as soon as it comes into the body. A RAST test simply measures the number of these antibody soldiers floating around in the blood. (Wikipedia has a good summary if you're new to all of this.)

Once a certain number of antibodies are running around, there's a much higher likelihood that the "soldiers" are really there to cause problems. Doctors use what's called a Positive Predictive Value (PPV) to determine how big the "army" needs to be to predict a true allergy. Each type of allergenic food has a different PPV:

95% PPV (kU/L)
Note that these values are different than class references. Classes are ranges specific to the type of analyzer on which these tests are run, making it difficult to compare results from different analyzers/labs.

It's much clearer to refer to your child's RAST test numbers using the quantitative values ("a RAST of 30kU/L to fish", rather than "Class 3 to fish").
Egg
7
Milk
15
Peanut
14
Fish
20
Soy
65
Wheat
80

Nonallergic people don't have standing immune armies to foods. However, just about everyone will show small levels of sensitivity to a few environmental or food allergens on a RAST test, even though the positive result is under the PPV and has no clinical significance.

In a child with a RAST above the PPV for that particular food, there is a 95% likelihood the child will be allergic. However, that still doesn't determine how his or her body will actually react! Just as with world politics, there are different kinds of immune "armies" in the body. Will the reaction be like the India/Pakistan border skirmishes? North Korean saber rattling? European world war?  While we don't know what factors do provoke all-out immune responses, we do know that the size of the antibody army does not determine the aggressiveness of response. Once your child's number is above the PPV for the food, the size of the number no longer matters.

There are also some armies that just never fight, regardless of how large they are. False positives on a RAST are most commonly caused by cross-reactivity with environmental allergies. A RAST test should only be used in conjunction with a positive history and/or skin prick testing/challenge testing. When doctors see the "large army" on the RAST and the "skirmish" on the skin from an SPT, they can feel pretty confident in saying the child is likely to have a true allergy.

Some children show many positives. However, some of the positives are simply armies are left over from previous fights, or armies that were formed and never used. It can take a lot of additional testing, history and challenges to determine which antibody armies are  really active for these kids. (As I said in a previous post, if your doctor runs a "full panel" on your child and hands you a long list of positives without further testing or explanation, they are not doing their job!)

Keep in mind that no testing is perfect and challenge tests are the gold standard for determining allergies. These generally aren't done when children are small, both because they cannot articulate their symptoms well and because their immune systems are still developing. However, once a child is of an age to be able to accurately report what he or she is feeling, challenge tests are a very important diagnostic tool. Rather than fearing these as parents, we should expect them.

So why does your doctor keep doing RAST testing even after your child is diagnosed? For many children, a drop in RAST level may (MAY!) signal the beginning of tolerance. Your doctor may periodically do RAST tests to see what patterns show up.

This is where I see a lot of heartbreak with parents. "My daughter's RAST numbers went way up this year" is a common lament on support boards. What you should know is that doctors expect RAST numbers to grow along with the child. Up until around kindergarten age, RAST numbers continue to climb simply because the child is adding more immune cell to their body.
A high RAST does not necessarily mean your child is in more danger from a serious reaction. A rise in RAST does not mean your child is somehow becoming more allergic! 
While we all hope to see a drop in our child's RAST numbers at some point, it also is not the entire story. Doctors now think that tolerance to allergenic foods may depend more on the development of "good" immune molecules like IgG4 than on a decrease in IgE antibodies. Also, tolerance to baked milk and egg proteins does not relate at all to RAST numbers. Children can have a very high RAST and still pass a baked challenge.

Over the years, I've come to look at RAST numbers strictly for their entertainment value. It's a viewpoint I highly recommend. They're certainly not worth crying over...and they're definitely not something to brag about.


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Saturday, March 17, 2012

A Prayer To Saint Patrick


May the corn beef not have soy
And the cabbage not have whey
'Cause the ER's not the place to be
On ol' Saint Patrick's Day

May the beer be pure of "fining"
And may nuts not touch the brew
'Cause my kid is getting older
And he's Irish, through and through

May his friends be ever vigilant
And keep him e'er from harm
'Cause all allergic Irishmen
Needs friendship's lucky charm

Though banshees sure are lurking
And pookas haunt the trails
Watch over him and keep him safe
Through all of his travails

And one more thing I'd like to ask
With an Irish heart that's pure
Please send us down our pot of gold...
A fecking Irish cure!



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Monday, March 12, 2012

The 5 Stages of Parenting a Food-Allergic Child


One thing dealing with food allergies for 17 years gives you is perspective. I joined my first on-line support board in 1999, so I've seen the same types of posts, over and over, from parents. The moms who make these posts seem to pass through stages, similar to the ones K├╝bler-Ross made famous:

Stage 1: Diagnosis/Panic 

These posts inevitably start with Help!, followed by "my child was just diagnosed with..." They come from all different types of moms:
  • Executive Mom. She's posting to get the list of store-bought foods her child can eat (Where IS it!). She's always surprised, and usually annoyed, to find allergies are going to require quite a bit of work and time. 
  • Traumatized Mom. Having seen a horrible first reaction unfold right in front of her, she never wants it to happen again and she's willing to read any amount of information or change her house in any way to keep it from happening.
  • Perfectionist/Guilty Mom. She knows there was something she did to cause these allergies. Was it the peanuts she ate every day during pregnancy or nursing? The Tylenol she gave for that first cold? Allowing that genetically-modified Cheerio onto the baby's tray? (There's a subset of this group called "Guilty Science Researcher Mom" -- a club to which I personally belonged for years.)
What they all have in common, although they deal with it differently, is that they feel overwhelmed and are looking for a lifeline. Hopefully a support board provides that most of the time because God knows we don't get it from our doctors!

Stage 2:  Adaptation/Coping

This is a very industrious stage characterized by immersion and huge amounts of time dedicated to the allergy:
Is my baby contact sensitive? Do I have to wipe down the grocery cart? What are my new grocery staples? Am I going to be in this supermarket the rest of my life?  How many Epi-Pens do we need? How do we carry them? Can I leave them in the car? Will insurance pay? How do I tell my family about this? Will they believe me? Do we have to label everything in the house? Are we still going to have milk or soy or peanut here, or are we going to get rid of it so we don't have to worry about him? Geez, can I DO without milk on my cereal in the mornings? How are we going to train day care? Will I have to quit my job? 
There's so much to learn! But eventually, parents get to a place where they can take a breath, knowing that their house and pantry and day care situations are under control. The child has not had a reaction. They have some certainty the child will not have a future reaction without something going wrong. Which leads to...

3. Stability/Grief

For many parents, this hits right around age 5. Part of the reason is that kindergarten requires a whole new set of adaptations. However, kindergarten also signals the end of early childhood and, along with it, the hope that the allergies will be outgrown. For the first time, the thought becomes real: we may be doing this - HE may be doing this - for the rest of our/his life.

The thought can be overwhelming and sends some parents back into Stage 2. I think this is how people become immersed in over-the-top precautions. It's easier to stay in the busy adaptation stage and work to keep their kids just a little bit safer than to deal with the feelings of loss that can come from acknowledging your child will always have the sword hanging over his head and there's nothing you can do to make it better, to make him completely safe. Adapting, even if the adaptations are crazy, give parents a sense of power. Recognizing our powerlessness is much tougher.

Some moms get lost in depression at this point. A particular warning sign is obsessively searching for/reading the articles about children who have died from food allergies and imagining one's own child in their place. It's important to recognize that this loss of the ideal future for our children is a real loss and that we have to give ourselves a break while we're going through this stage and get help if we can't move through it.

But move through it most of us do. Only to arrive at:

4. Relapse/Anger

For most of us, the worst does occur again, particularly if our children have multiple allergies. Our child has a reaction. With the reaction, all our planning and defenses are tested and, usually, found wanting.

After the overwhelming fear wears off, we're left with anger. Inwardly-directed anger toward ourselves/our spouse if the oversight that caused the reaction happened on our/his watch. Or, far more enticing, outwardly-directed anger if the reaction happened at school or a friend's house or at day care. (I've seen some really crazy posts from parents who have let their anger toward other society members spiral out of control.) Advocacy efforts can be born from this anger, but it's important we don't lose perspective and only consider our child's needs.

Once the reaction is over and the bulk of the anger has been discharged, many parents move back through Stages 2 and 3. They review their precautions, "batten down the hatches" and grieve all over again for their new, often more restrictive, life.

Note: There's an alternative Stage 4 for children who do not have a reaction they remember, and that's anger toward parents who have put in place (in their minds) unreasonable restrictions. This stage can be very dangerous because teens sometimes take risks as a result of this anger. If your 9+ year old child has not had a reaction they remember, make sure you give them the opportunity to voice their doubts and anger toward you! You may be surprised, if you ask, just how angry they are.

5. Acceptance/Calm

I am clearly not the Buddha of food allergies, but I do think I spend at least some of my time now in Stage 5. But getting there requires courage, every single day.
  • Courage to say "no" to a precautions we do not need. Each family has to hone their own comfort zone. I had to learn to stand up to other mothers who told me I was "doing it wrong" because I didn't worry about the peanut butter on the playground rungs, or gave my child tree nuts he could tolerate despite the risk of cross-reaction, or let him leave his medicine bag outside the room during school testing.
  • Courage to say "yes" to precautions that work for my child. The rule in our house is that, if both parents are uneasy, it's probably a precaution that should stay on the list. 
  • Courage for food challenges. When we started these, I couldn't even be present. Having gone through almost a dozen now, a couple of which resulted in reactions, I know it's necessary. I want my son to truly know which foods are problematic and that means knowing which ones are not.  
  • Courage for treatments. As I've said elsewhere, my son passed a baked milk challenge last summer. Dosing him with milk, knowing he will have symptoms in some cases, is excruciatingly difficult.
  • Courage to add new adaptations (like college) with as little panic, grief and anger as possible. There's no way to avoid going through all the earlier stages when a new situation arises, but I like to think I've found the major pitfalls and avoid them more successfully now. I don't let the negative thoughts get out of control when I envision my child at college. I keep anger toward non-accommodating schools in perspective. 
Of course, if you've read my other blog entries here, you also know how often I fail! After all, I've stalked my teen on a lunch date, trashed my family and friends for their off-hand comments and indulged in daydreams about my child's life without food allergies.

But at least I can laugh at myself about it. And isn't that really as much as we can hope for some days?


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Saturday, March 10, 2012

Why Do Bad Allergy Doctors Stay In Business?

I recently saw a post from a mom that I've seen in various flavors, over and over, for years:

"Help! My child just went to the allergist. They performed a comprehensive panel of scratch tests and the doctor told me he's positive to tomato, soy, walnuts, pecans, peanut, kiwi, fish, potato, beans, wheat, lettuce and milk. How do I feed him now?!"

Why is it that, despite clear guidance from the AAAAI and other organizations on the limits of these tests, doctors continue to do these treasure hunts?

Dr. Wood, a noted expert in the field, has estimated that up to 60% of "positives" on a SPT are really false positives. Because of this, a skin prick test should be used to confirm an allergy to which there is already a clinical history. Allergies are confirmed by SPT and at least one other piece of evidence: a history of issues when eating the food, a positive RAST test and/or a food challenge.

I'm not excusing all mothers. There are plenty of mothers who shop for an allergist until they find one willing to do this type of shotgun testing because they have anxiety/control issues and actually want to limit what their child eats. There are other mothers who, either intentionally or unintentionally, misunderstand the information their allergist gives them after this type of a test. However, there are enough of these stories floating around the various support groups on the web that you have to wonder: why are the good allergists not policing the bad ones? Why is this type of nonsense testing happening at all? Is it going to take a "Hall of Shame" for doctors to get them to stop?

Bottom line: if your doctor has given you a long list of foods to avoid only on the basis of SPT results, find a new doctor.  Don't assume that all allergists know what they are doing when it comes to food allergy testing. Educate yourself and understand what allergy tests can -- and cannot -- tell you.

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Thursday, March 8, 2012

"But Mom, I'm NOT Allergic!"

It's my daughter's birthday today. The daughter (as she reminds me) who I rarely write about. The easy child.

When my daughter was born, we were terrified she would also have allergies. We had put off having a second child because dealing with my oldest son's allergies was sometimes overwhelming. When she was born, my "DON'T GIVE HER FORMULA UNDER ANY CIRCUMSTANCES!" message made the nurses tip-toe past my room, shaking their heads at the nut cases who were ultimately handed babies to take home.

We did have her screened before six months, just to see if anything would show up. Nothing did, but the doctor warned us that screening tests for infants were notoriously unreliable. He gave us the then en-vogue advice: introduce solids slowly and avoid allergenic foods.

What we didn't allow for was that our daughter was a different baby than our son. Completely different. She was more than 3 lbs heavier at birth. As my mother said, she came out "fully baked." And she was hungry, dammit!

Her first solid food? Rice, beans and chicken with pretty heavy Mexican spices she lifted off my plate when my back was turned in a restaurant. Not only did she not have food allergies, she managed to get that food down without teeth and without choking. The old adage about they'll reach for it when they're ready was something I wasn't willing to hear, so she had to go way over the top of her baby seat to get there.

Way over the top has been a pretty good description of life with her ever since. Second kids always have to fight harder for attention, but in our house our daughter knew our son came first and that she had to push for the things she wanted. It wasn't that we loved him more. It was that he literally came first. First in our thoughts because of safety. First to be fed because of cross-contamination worries/special needs. First to be checked on at night. There just wasn't as much room for worry left in my brain to dedicate to my second child.

There didn't need to be. There was no special meeting required for her first day of preschool; I just dropped her off. Ditto kindergarten. I never volunteered as class mother for her parties, or chaperoned her field trips.  I didn't attend birthday parties with her. It wasn't fair that she got less of my time, but it was truly necessary. At least, that's what I told myself.

The scatological diaper contents hit the rotating appliance around first grade. No peanut-free table. "Mom, Ashley gave me part of her Snickers bar at lunch today!" she announce proudly. "WHAT?" I say, marching her over to the sink and thrusting her hands under. After a few moments, she makes it clear that the Snickers bar she ate was only a Snickers bar, not a ticking time bomb she had brought into the house. Long gone. Uneventful. But she really liked it. "Can we get some for my lunches?"

After tons of badgering, we started down the slippery slope of the no-longer-peanut-free household. A party bag treat here or there. Then: why shouldn't she keep her Halloween candy? Why couldn't she have peanut butter in her lunch? We had already gone part-way down the slope with cow's milk. (The growth and health benefits of milk outweighed the risk in our opinion.) Little by little, wrapped peanut-containing candy appeared on the top of the fridge and were packed in her lunch box, along with individual peanut butter cups with disposable knives.

While safety still came first (no peanut butter eaten at home), there was no reason she shouldn't have these foods, other than my fear of a mistake and my wish to give my son a "safe haven." And you know what? The world didn't end. Apparently, the need for the totally-free-peanut house was my need, not my son's need. My son already knew there was a world of foods out there he couldn't have and pretending that it didn't exist within our house didn't magically erase this fact.

My second child is outgoing and confident. However, she's played a game all her life that makes me wonder: the "do you love me enough?" game. The questions take various forms, but the most popular one is "if you were holding both me and my brother over a cliff and you just couldn't hold both of us, who would you let go?"

"I can hold both of you," I always respond. "I am strong enough to hold you both - I promise."

"But what if you just couldn't," she always continues.

"But I CAN," I say loudly. I have to say it loudly so we're both sure we hear it.


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Tuesday, March 6, 2012

FAHF-2 Trials In Chicago!

I'm pretty excited! Just learned via the Allergist Mom that there's a clinical trial in Chicago (Chicago!) for FAHF-2, a traditional Chinese medicine made from nine herbs.

Chicago has pretty much been the final frontier for clinical trials. We've watched year after year as Duke and Mount Sinai and even Arkansas (Arkansas!) set up clinical trials. Several years back, I did call Duke to see if there was any possibility of flying in to participate, but local residency was a requirement.

We participated in the food allergy benchmarking family study at Children's Memorial Hospital several years back and it was a great experience (other than the blood draws for my then 7-year-old daughter). In addition to receiving a comprehensive work-up of my allergic son, we were also given an allergic profile of the entire family, including a measurement called Total IgE.

Total IgE is just what it sounds like - a measure of the total output of immunoglobulin E by the body, the antibody type related to allergic response. (A RAST test measures IgE for individual allergenic proteins like peanut.) Total IgE is not clinically useful so it's only measured when doctors think there may be a problem with the immune system as a whole, like hyper IgE syndrome, or for research purposes.

Interestingly, I learned during the course of the study that children with multiple food allergies often have very high total IgE levels. A normal (non-atopic) level is <130kU/L; someone with hyper IgE syndrome might clock in at more than 15,000kU/L. Here were the results from our study:

Our son
~3000
My husband
~300
Our daughter
180
Me
7

My husband has severe asthma and my daughter has environmental allergies so this made sense. More important, it allowed me to blame my husband for all the issues with my son.

I'm only half kidding.

Why am I so excited about the possibility of participating in this study? Of all the treatments looked at over the years, only FAHF-2 truly seems to have the potential to cure allergies. While the oral tolerance studies have been promising, they don't always stop allergic reactions from happening. Instead, they "stretch the balloon" so participants can tolerate more of the food to which they are allergic. Some participants increase their tolerance to so high a level that they are effectively no longer allergic; other will still react once they exceed their new tolerance.

What makes FAHF-2 different from the tolerance studies is that it appears to retrain the immune system. For whatever reason, the immune systems of kids with multiple food allergies gets off on the wrong foot. This treatment seems to essentially reset the immune system by decreasing the overall levels of IgE in the body and increasing IgG, a "good" immune molecule. The result is that the body no longer mistakes common foods for toxins or parasites. Additionally, unlike with the one-at-a-time tolerance studies, FAHF-2 can tackle all allergies as well as asthma symptoms. Best of all, the effects seem to last well after the medicine is stopped. (How long remains to be seen...but that's the point of a clinical trial.)

I have no idea if we'll get in - we're just at the information gathering stage. However, I'm sharing my thoughts in case there are other readers in the Midwest who might be interested. There's nothing I'd like better than to send my kid off to college knowing the danger from anaphylaxis was a thing of the past.


Technical Footnote For Fellow Science Nerds

As I mentioned in a 
previous post about food allergy deaths, research shows that the open loop between the IL-4 and IL-21 cytokines is at least part of the reason some people die from anaphylaxis. FAHF-2 works to "tamp down" the IL-4 cytokine response. At the same time, it increases interferon.1 (Interestingly, at least to us science nerds, hyper IgE syndrome also seems to be tied to excessive IL-4 caused by a genetic defect.2) Long after treatment, both total IgE levels and specific IgE levels for peanut  were way down and "good" IgG levels were way up3,4 , essentially modulating the helper cell immune response from Th2 to Th1. That's a big deal!

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Thursday, March 1, 2012

Are Our Food-Allergic Children Disabled?

My son and I had a rare moment of togetherness this week: filling out the forms for the College Boards. This is a joint project because, while it requires my credit card to pay the fees, there are a ton of profile questions they ask about college plans, priorities, career goals, etc.

It was the question about special needs/challenges/disabilities that stopped us cold:
Do you have a disability that requires special provisions from the educational institution? Mark the one choice that most closely describes your situation. Providing this information is entirely voluntary.
Huh. There was an option provided for "Other." Should we check it?

My son squirmed on the chair next to me, clearly uncomfortable. "Just let it go, Mom. Please just don't get into it."

Even at 17, my son is very sensitive to the idea of being different from others and asking for what he needs. But wouldn't it be a good idea to just tell all these schools up front that this student would have special requirements?

A second later, the other side of that coin hit me. Would the schools actually be prejudiced against him because of his special needs? Or, worse yet, would they see the words "food allergy" and assume the host of negative connotations that often go with it in many people's minds? Overprotected. Sheltered. Fussy. Controlling. Faking. Was the line about disclosure being "entirely voluntary" a warning?

We left it blank. There's just nothing positive that could come out of a label without further discussion, and the time for that discussion was after he had narrowed down his college list.

My son will continue to face this question on all of his applications, though. Should he try to explain the force food allergies have played in his life, perhaps even write it into his essay? Or are food allergies just a quirk in physiology, like my friend who had one leg shorter than the other and had to learn to compensate when she danced?

I have gone back and forth with this over the years. Shortly after a reaction, it can feel like the world is crashing down on us and food allergies are unbearable. Most of the time, though, they're a nuisance that we've learned to live with. The word "disabled" doesn't feel right to me because my son is quite able 99.99% of the time. However, in a world where food is social currency, he will not be as able. It's the mental and social toll that make him different, regardless of how hard we tried over the years for inclusion. He will simply never be able to eat with other people without planning in advance, and when he does eat, he will always have to consider the possibility of a reaction.

A few weeks back, I had a knock on my door. It was the wife of a local political candidate who wondered if I might be willing to put a sign in my lawn in support of her husband. I explained that I really needed to know a little more about his views before I could endorse him.

During her overview, she mentioned that a lot of the work he has been doing has been focused on rights for disabled children. (They have a daughter with autism.) I said "Wow, that's great! We have a child with a disability too, so I know how much that type of advocacy is needed."

"Really," she said. "What type of disability?"

"He has severe food allergies," I said.

She made an exclamation of...disgust? surprise? disbelieve? "God, how I WISH that was all we had to deal with!" she exclaimed.

O.k. I get it. Not visible. Only affecting us that pesky 0.01% of the time. Not the same as having a child who will never be able to marry or be on their own in the world without significant assistance. But also not nothing.

My son and I continued on with the College Board questions until we got to the page where they ask you to rank, in order, your criteria for college selection.

"I think we should put a #1 next to 'other'," I said to my son. "Food allergies are really the most important consideration."

"Oh, come on Mom!" he said. "Food allergies are maybe fourth on the list for me. What kind of a school it is and where it is and what kind of programs they have are all most important to me than stupid food allergies. Wherever I go, I know I'll be able to figure out a way to deal with it."

And you know what? He will. It may be easier at some schools, but it will be manageable at all, even if it means eating eggs cooked in an electric skillet every day.

Disabled or not, I know that food allergies have actually enabled him to deal with tough, life-threatening challenges. And isn't that ability to cope with the worst life can throw at us what we want for all our children?

I can't go so far as to say I'm thankful for food allergies. But I do think there's more able than dis overall.