New School!

As of yesterday, we have four kiddos in four different schools.  Nothing like complicating things!

It just wasn't working with E at school.  Their solution to his allergies was to have tables in the classroom with several children at each table...and E at a desk by himself.  Last year, he ate at a desk by himself, but he was allowed to choose a lunch buddy each day, as long as the child hadn't brought nuts or fish for lunch.  He loved it!  Well, they no longer allowed that this year.  The students also move around a lot each day, from table to table, which was one of the things we liked for our active little guy.  This year, they no longer allowed him to do that, either; he had to sit at his desk, alone, all day long.

The result was suppressed anger.  E has had a lot of emotional stuff going on at home over the years, but he has never, ever acted out at school or camp.  Ever.

This year, he started out with 'happy faces' on his weekly report, especially when it came to respecting his teachers and peers.  His teacher even wrote in "Always!" under the 'Respects Teachers' column.  It went from that to E being written up almost every day.  When he was written up, he had to write what he had done, why he did it, why he shouldn't have done it, and what he could do differently.  He was written up for things like breaking the eraser off of his pencil, and when asked why he did it, he said that it was because he was mad.  His teacher told me he had no reason to be mad.  I totally disagree!

Another time, he said that the reason he was being distractive was because he wanted to make his teacher mad!  I knew that his teacher was sometimes frustrated with him, and I asked him how he felt about her.  He lit up and said that he really liked her!  So, he was just angry with being isolated and left out, and he was acting out because of that.

So, we've been communicating with the local public school, where he will be in a peanut-free classroom (because they have a cafeteria, whereas his other school didn't), and will also receive the behavioral and special education support he needs.  He's excited about it, and I'm praying for the best.

E has been home all week with asthma, and next week is vacation.  He was scheduled to have an EEG on Monday to rule out seizures, but they couldn't do it because his asthma was so bad, so we had to reschedule.  It's been a long week at home because he's out of his routine and is struggling emotionally.  I'm trying to make the best of it, but I'm drained.  I've been dreaming about a vacation...

Nick is so angry about the whole school situation.  I understand his anger and frustration.  The directors of the school clearly think that we're over the top, and they've made comments about the fact that no other parents are so strict with how their child's allergies are handled, and how nothing the school does will ever be enough for us.

It's easy to start feeling like we're trouble makers...and then I read the story about yet another child who died from eating peanuts.  I'd heard about it when he passed away last month, after being in a coma for quite awhile, but it wasn't nearly as publicized as some of the other recent allergy deaths.  The article I read today highlighted his parents urging other parents to have an allergy plan and to take their children's allergies seriously. 

It just drove home how serious this really is.  One of the final straws was last week, when E informed me that they were having a 'Snack Shack' and asked if he could take in money to buy a snack.  He knew that they were selling Doritos, which are safe for him.  So I put his money in a bag, along with a note to his teacher, telling her that he was allowed to buy Doritos.

Well, he came home from school with two empty bags, neither of which were Doritos.  I asked E what happened, and he just said that he was trying to look on the labels to see if there were any peanut symbols on them.  He'd decided that he didn't want Doritos so he bought two things that looked like things he'd eaten before.

He never should have done that, and I spoke to him about it, but how on earth did it happen?  Why hadn't his teacher made sure that he bought the Doritos?  I called the school, spoke with the principal, who said that she would look into it.

Apparently, the food was sold by older students to raise money.  E told his teacher about the Doritos and showed her the note, and she told him to put the money in his pocket.  When it was time for Snack Shack, the children who had brought money left the classroom, without an adult, and went to purchase the foods, unsupervised.  E was able to purchase whatever he wanted, and no one checked on him.

True to form, the principal blew it all off as no big deal, which to me was a clear indication that she just does not get it.  Maybe it takes an allergy parent to see that that's the kind of slip up that can quickly go bad and lead to a catastrophe.  All I know is that we couldn't keep taking chance after chance...and there had been quite a few incidents since school started.

I realized that I'm angry, too., but maybe my anger's just buried a little deeper, or clouded by all of the other things that go on in this family each day.  I'm worried for other children with severe food allergies, in that school and other places where people aren't aware or don't understand the seriousness.

For now, I'm looking ahead.  We toured E's school, and it seems really nice.  It's bigger than his current school, which is very small, but is still a reasonable size.  I was so impressed with the staff we met and how they connected with E right away.  E was excited because there were a lot of pictures of students outside their classrooms, and he recognized quite a few of them from church, summer camp, and the Boys & Girls Club.

I'm sure it will be challenging at times, dealing with the schedules and activities of four different schools.  I'm also sure that it won't be as stressful as what we've been dealing with so far this school year!

E's Allergy Testing

E had allergy testing done recently, just to see if there were any changes.

His peanut allergy remains at the highest level (Level VI), and cashews, also a Level VI, are off the chart!  Pistachios are a Level VI, too.  The other tree nuts came way down, so we've scheduled an almond challenge for the end of the month.  I'm not going to get my hopes up, but I will be happy if he passes it.  When he was first diagnosed, I told Nick that if there was just one nut that he wasn't allergic to, I hoped it was almonds.  No such luck.  But that may change!

The lab didn't do the fish/shellfish testing, so we don't know where that stands.  We're just going to wait, rather than putting him through another test.  Anyone living within a hundred mile radius of the lab may have heard him while he was being tested.  It wasn't pretty...

Unfortunately, we're still trying to get a 504 Plan in effect at school.  We had a meeting at the beginning of last month, but the plan they sent us to sign was so far from what we had in mind, that I actually did the research and wrote a 504 Plan myself!  What they sent us was basically the minutes from our meeting, with a brief accommodations section at the end.

I think that the school personnel find us to be over the top, but we take this very seriously, as we should.  They eat peanuts and tree nuts in E's classroom, and we have to make sure that every precaution is in place so that he doesn't get exposed to it.

I'm all for peanut-free classrooms, although his school won't even entertain that.  What concerns me is that they can remove peanuts, but E could still die from a cashew!  There are so many kids who have life-threatening allergies to dairy, eggs, and other foods, that it's next to impossible to remove all allergenic foods from the schools.

So, we just do what we can to keep our little guy safe...and pray for a cure!

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E's Allergies and School

E is back at the same school but in a new class with new teachers.  We got off to a bit of a rocky start with school.  First of all, the transportation department said that they wouldn't transport him.  We went through this last year because we live 1.5 miles from the school, and in order to ride the bus, we have to live 1.51 miles from school!  We got a letter from his allergist stating that he has serious asthma and would be better off riding a bus than walking a total of three miles each day.  Surprisingly, as soon as transportation received the letter, the assigned a bus to both E and GracieGirl.

Then we had the allergy situation.  The school is small and doesn't have a cafeteria, so the kids eat in their classroom.  E always had a special table and he could invite a friend who wasn't eating peanuts for lunch to sit with him.  After lunch, the kids were responsible for wiping down the tables.  What I hadn't realized was that the kids then moved from table to table, meaning that E could be sitting at a table where someone had just eaten peanut butter and then entrusted a kindergartner to adequately clean the table!

So, their solution this year was to have all of the kids at their tables...and then have E at his own desk, all alone, apart from the others.  Let's just say that I wasn't happy with that solution!

We decided to create a 504 Plan for him, just to make sure that the school is doing everything they can to keep him safe.  He was bullied once last year by a kid who lunged at him with peanut butter on his hands.  He was also told by his reading partner (the younger kids partner with older students in the school to practice reading) that no one could get sick or die from peanuts and that he was making it up.  She didn't mean anything, of course, but it really upset him.  The 504 Plan will ensure that anyone working with him in any classroom will be aware of his allergies, know where his EpiPen is kept, and there will always be a designated teacher to administer the EpiPen and call 911.

It's obvious that they think that we're over the top about the allergies (we were pulled aside and spoken to by the directors of the school for upsetting E's teacher by telling her how serious his allergies are), but I don't really care what they think of me.  My job is to keep my son safe.  I want to have a good relationship with his teachers and staff, but he is my number one priority!

Food Allergies at Disney World

Many people have told me, when getting ready for vacation or an afternoon out, to just throw everything in a bag or suitcase and go.  Believe me, nothing could be further from our reality.

For our vacation, I spent a huge chunk of time just making sure that all of the prescriptions were refilled, E's and J's EpiPens were in date, the large array of allergy meds were refilled.  It's never as simple as just calling in a refill; several of the meds require prior auths, some meds couldn't be refilled because it was too early, others were expired and needed a doctor's call...  Once everything was in order, I had to pack all of them.  We fill an entire carry-on with prescription meds!

Aside from the meds, meal planning is even more time consuming.  I researched menus for all of the counter service restaurants at Disney, as well as the table service restaurants.  I made extensive lists of which ones served meals that would be safe for E, and which ones (almost all of the counter service restaurants) served peanut butter, nuts, and other unsafe foods.  I packed lots of wipes so that we could clean the area where E would eat, in case the person who ate there before him had eaten nuts.  We called Disney and made sure that all of our dinner reservations noted all of E's allergies.  Then Nick made up business cards with E's name on them, with a list of the foods that he cannot eat.

 

I read blogs written by other parents of kids with allergies, and learned which restaurants and chefs were most accommodating, which had more options than others, and which to avoid.  Another good resource is the Allergy Free Mouse, which is definitely worth checking out.

 

All of the preparation made for an easier trip, but the thing that made it the best was that Disney, as a whole, really knows had to deal with food allergies!  On the blogs, I'd read that many families with children with multiple food allergies vacation at Disney exclusively because it's the only place where they can relax a little bit, and take a much-needed week off from vigilant food planning and prepping!

There are certain restaurants that we just plain avoid: those that serve Chinese and Thai foods because of peanuts, Moroccan and Indian restaurants because of tahini, and seafood restaurants, to name a few.  The restaurants that we did choose were amazing.  At each restaurant, we gave the server E's allergy card, which he or she passed on to the chef.  One of the chefs would then come out to the table, confirm the allergies, and tell us what they could make that would be safe for E, whether it was on the menu or a custom meal.  They all explained that the food would be prepared on a dedicated grill, away from all potential allergens.  When the meal was served, they came out to check to make sure that we approved.  After the meal, they discussed dessert options, which were usually something custom made, since most of the desserts have possible cross contamination with nuts. 

I can't even explain how amazing it is to have food allergies treated as seriously as they are, and to have some peace of mind while traveling and eating out.  While I don't consciously worry every time we eat out, there's always that underlying stress, wondering if the food is indeed safe for E to eat.

The food allergy world is reeling after two deaths of children with food allergies in the past weeks.  One was 19-year-old Cameron Groezinger-Fitzpatrick in Massachusetts, who was home for spring break and died after eating half of a cookie.  The other was 12-year-old Maia Santarelli-Gallo, who died after eating ice cream at a Toronto mall with her father and sister.  This, of course, is the worst nightmare of every parent of a food allergic child.

I sometimes feel like people get tired of listening to me talk about food allergies, but if it can save my child's or someone else's child's life, I'm going to keep on talking.  Awareness is key.  Disney is definitely aware, and I commend them for that!

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Dealing with Eczema

I wrote this on our Truly Pure & Natural blog, but wanted to share it here, too.  It seems like there are so many people suffering with eczema, and I wanted to share a few things that have worked for us over the years.


We've received many questions about eczema recently. I sure don't have all the answers, in spite of having suffered with eczema myself, and having three kids who have had it.

What I do know about eczema is that it's complex and there doesn't seem to be any simple answer. I've tried different diets, changing their environment, homeopathy, herbal remedies, and prescription meds when there didn't seem to be any other choices. Some things worked beautifully...for awhile. My son was off of all carbs and was taking different herbal supplements and his skin cleared up, only to break out again when the season changed.

Some kids do better in cooler weather; others improve in hot weather. Some kids are helped by swimming in pools or the ocean; other kids' skin is aggravated by chlorine and/or salt.

Elimination diets can be very helpful. Some of the common allergens that may contribute to eczema flares are:

wheat and gluten

dairy

soy

eggs

shellfish

citrus

chocolate

corn

peanuts and other legumes

artificial colors

artificial flavors

artificial sweeteners

preservatives

and more!

It's helpful to find out if the child has environmental allergies. One of our sons is extremely allergic to dust mites. Once we removed the carpeting from his bedroom, covered the mattresses and pillows, took down the blinds, and removed all stuffed animals and books, his skin improved. We sanitize his bedding in the washer and dryer, and we dust and damp mop frequently. There's also an air purifier going in his room at all times.

We avoid personal care and cleaning products that have artificial dyes, preservatives, and fragrances in them. The children wear cotton clothes and avoid polyester as much as possible. When we do laundry, we use a natural, fragrance-free detergent, and we always do a double rinse when we wash their clothes, bedding, and towels. We turn their clothes inside-out when we wash them so that the clothing that touches their skin gets extra clean.

As far as TPN's products go, we use different products, depending on the severity of the eczema.

One thing that we like to use is plain coconut oil. Coconut oil has healing properties, absorbs quickly into the skin, and is very beneficial for eczema. We offer two types: Raw Organic Cold Pressed Extra Virgin, which has a coconut smell, and Organic Expeller Pressed, which is slightly more processed but still good for the skin, and does not have a coconut smell. In warm weather, we keep the coconut oil in the fridge where it solidifies and is easier to apply than when in the liquid form.

We also use Oria's O'shay Nature's Butter. It's very healing and soothing, and feels so good on very dry skin with eczema.

For mild eczema with dry skin, we use Tate's Conditioner. It's marketed primarily as a hair conditioner, but it's also used as a skin conditioner. (Click here for a huge list of different uses for the conditioner.) It works well for dry, irritated skin, providing light moisturizing.

Other things we do are to bathe infrequently with very mild soaps. We offer Coconut Milk Bar Soap, and the Lavender in particular often helps eczema.

One thing that helped a lot when my one son's eczema was severe was wet wraps. He didn't like them at all (he also has sensory issues, but I don't think that they would be particularly comfortable for anyone!), so we had to get creative and use a little motivation (okay, bribery!) to get him to follow through.

I first heard about this being done at National Jewish, and we then did it under the guidance of our physicians at our local children's hospital. It should always be done under a doctor's supervision because, if the eczema is open, the treatment could lead to infection.

The child soaks in the tub, filled with warm water, for 15 or 20 minutes, and then is quickly patted (never rubbed) dry with a towel (leaving the skin slightly damp), and a moisturizer is applied immediately. A physician may recommend a steroid or other prescription cream; we had good results just using a thick moisturizer or salve. Next, wet cloths or wet clothing are put on the child. We wet long underwear with warm water, wrung them out well, and then put them on. Over the wet layer, goes a dry layer. We used oversized sweat pants and sweat shirts or cotton pajamas.

The child can then lie in bed, under a warm blanket and watch a movie or do something to keep him or her occupied for the next two hours. Check periodically to make sure that the clothes next to the child's body are still damp. If not, spray them with warm water from a clean spray bottle.

After a minimum of two hours, remove the wet clothing, apply an additional layer of moisturizer to the child, and dress as usual.

In cases of severe eczema, I've heard it recommended to do this several times a day and then once before bedtime, when the child will then sleep in the wet wraps.

That never happened here, but we still saw results when we did it during the day.

For less severe eczema, another option is to simply bathe daily as described above, towel off as above, and slather the child well with a salve or moisturizer immediately, within three minutes of getting out of the tub. This process helps to seal in the moisture from the bath. With this, I've always used my salve or a homemade body butter because my son said that every single cream that the dermatologist suggested either burned his skin or made it itch even worse.

~~~~~~~~~~~~~~~~

Allergies and More Allergies!

It's common for E to frantically run to me, crying about his eyes or ears itching. He gets so worked up that it's often difficult to tell if it's real or imagined.

I get a cold compress for his eyes, rub his ears for him, and try to calm him down. I also give B-dryl if I think he needs it.

Last week, when he ran in, I did all of those things, and he eventually calmed down, only to return a couple of minutes later. This is what he looked like when he returned:

Nick took this a couple of hours after the initial reaction.

E had calmed down a lot, but the side of his face had not.

I still don't know what he ate or touched. He'd had a bite of GracieGirl's GF pizza, that he was really nervous about eating. He asked three times if it was okay. It was a leftover slice from a frozen pizza that Nick had bought, so I hadn't actually seen the ingredients. Nick's really good about checking, but it was just strange that E was so worried about it. He didn't want any more after the first bite.

He also touched a latex balloon. He's been around balloons before, so I don't think that he's allergic to latex, but he'd had a really severe asthma attack after playing with these particular balloons, so I'd put them away, just to be safe. One of the kids found them and got them out, and E touched one.

I didn't know it, but I found out that he'd gone downstairs and pet one of the cats. He goes down there occasionally, but I always make him wash up thoroughly afterwards. Since I didn't know that he'd gone down there, I hadn't made him wash his hands.

So, I don't know what it was, but his meds didn't touch it. His eye stayed swollen for the next 24 or so hours, and then graduated to looking like this:

The swelling is finally gone now, but he has a nice scar under his eye.

The next day, GracieGirl had a reaction to something, and itched from head to toe. A bath usually helps, but not this time. She just got more upset and wanted to get out. B-dryl didn't seem to do much, so I just smoothed the body butter I make all over her, and tried to calm her down.

Jay was next. He gets this strange, painful rash that only happens when we travel, usually to the beach. His dermatologist thought it might be an allergy to the sun, but he's not sure. This time, he got it while we were at the Chesapeake. It was unbearably hot for a couple of days, and he was outside a lot (in his long-sleeved shirts and jeans, of course). He went right from the Chesapeake to the beach, and now his entire face, except for his eyelids, is covered, as is most of the rest of his body. I haven't found anything that helps, and his dermatologist doesn't seem to be able to help him.

I dream of a life without any allergies!

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The Soft Pretzel

Last year, we had all sorts of problems with the YMCA camp, mostly to do with E's allergies. They left his EpiPen at the pool, a mile away. They didn't take it with him when they walked to the park. One time, they forced him to eat a snack, saying that he was being disrespectful to the camp counselor by telling her that he was allergic and couldn't eat their snacks.

This year, he's back at the Y, but at a different location. The staff is well aware of who we are, and their EpiPen and allergy policy has been completely revamped.

E had a great week at camp, but today he came running up to me when he got home today, saying, "Mommy! They forced me to eat a soft pretzel at camp!"

My jaw dropped, and I became irate as he told me how they forced him to eat it, even when he stomped his foot and said that he was allergic. He was very animated as he relayed how he told them that he couldn't eat their snacks, but they just told him to "chew, chew, chew!"

I asked him what Daddy said, and Jay told me that he pulled over and stopped the van because he was so mad.

E's PCA was with him today, but E told me that he hadn't seen what happened. I told E that he has to tell his PCA immediately when something like that happens. Nick walked in at that point, and I started going off about how they forced E to eat the pretzel, telling him to just chew it up.

Nick said that E hadn't told him that.

E then admitted that they hadn't actually put it in his mouth or told him to chew it up. I asked him why he'd told me that, and he said that he didn't know.

Meanwhile, Nick was on the phone with the camp director. I could hear him calmly and firmly telling her about the dangers of cross-contamination, especially with E being so allergic to sesame seeds, and about really having no clue what's in the pretzels, and how they can't just assume that they're flour, yeast, and salt.

When he got off the phone, he told me that E did eat a soft pretzel...but only after he asked for it! He asked, they figured that it was okay because it didn't have nuts in it, and they gave it to him!

Granted, they shouldn't have given it to him, and his PCA should have seen it and stopped it, but I cannot believe that he totally made the whole thing up about them forcing him to eat it, based on something that he remembered from a year ago!

That child never ceases to amaze me. I'm amazed by his memory, by his ceaseless ability to create drama, and by the fact that I can never, ever let my guard down with him or believe anything he says! As crazy as he makes me, I am really, really impressed with his memory. :)

 

*****************

Food Allergy Awareness Week

Look at the cute little guy on this flier

for Food Allergy Awareness Week

from Kids With Food Allergies!

This year, they're giving away

prizes, and our picture won a

classroom pack of

Surf Sweets Organic Gummy Candy!

We'd never had them before, but the kids

love them.  Best of all, they're safe for them!

So appreciative of all that Kids With Food Allergies

does for our kids...

*******************

Sucks to Be You

From Food Allergy Fun


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Allergy Season!

It's allergy season. Jay gets two allergy injections every week, and he's had some bad reactions, so he's taking additional meds prior to the shots. The shots aren't helping with his symptoms yet, and he, along with E, got hit a few weeks ago. As of this past weekend, Nate and GracieGirl are ready to rip their eyes out, too. I didn't even think about it, but E's PCA was here today, and she said that the trampoline is covered with pollen. What a way to kick it up, by jumping on it! No wonder the kids started hurting yesterday!

E just screams because his eyes are so swollen and itchy. He rubbed them so hard that he actually broke the skin and has scabs under his eye. He's had a number of asthma flares, and he also broke out in an itchy rash on his wrists. He wakes up crying and screaming during the night, and I know he's exhausted.

Spring was always my favorite season, but it's hard to enjoy it when I have to watch all four of my kiddos suffer. I'd love to open the windows, but that's out of the question. So, we have the a/c running in April. Even so, Jay just took five ice packs up to bed because he's so hot. Of course, he won't change out of his ever-present long sleeves and jeans. There's no point in arguing with him, so I just hope that he falls asleep soon!

Allergy Shots and Springtime

Jay got his first allergy shots on Tuesday. He got shots for dogs and cats on his right arm, and trees and dust mites on his left. His right arm is fine; his left arm is not. It's actually so swollen, hot, and itchy that it kept him awake until 3:00 this morning. Two days after receiving the shot, the swelling has not gone down at all.

I called the allergist today, and the nurse recommended tying an ice-filled bag around his arm, giving him B-dryl (which we've been doing), using hydrocortisone cream, and giving ibuprofen. She was going to ask the doctor about possibly increasing his dose of regular allergy meds, and also about taking something on the day he receives his weekly shots. She didn't get back to me.

Needless to say, Jay is not thrilled to get another shot next Tuesday. I just hope the swelling goes down before then.

Meanwhile, spring is here and it's warmer than usual. For the most part, we're keeping the windows closed because tree pollen is very high and grasses have started, too. All four kids are responding with sneezing, itchy, watery eyes, and runny noses.

Let the fun begin!

Liebster Award

From Life in Joyful Chaos:

I was very surprised and very happy to receive
the Liebster Award from Anu at
Allergy Foodie -
thrive with the top 8 food allergies!

Honestly, on the day she told me, I'd been kind of down, overwhelmed, and toying with the idea of not blogging anymore, thinking that I could focus on other things if I wasn't blogging. Well, I can't even say how this award brightened my day! It just changed my whole outlook on everything! Thank you so much, Anu! :)

I love Anu's blog because she is so upbeat! Her son has sooooo many more allergies than my kiddos do, and still, her recipes look delicious, many full of the wonderful aromatic spices that I love. She explains ingredients that may be new to people who are just starting out on the allergy adventure, and she does great product reviews. She makes food fun for her son, and for anyone else who tries her recipes. Check out her blog; you won't be disappointed!

Oh, and if you want to find some other great allergy blogs,
be sure to check out Anu's other recipients of the award!

There are rules to receiving and accepting this award.

1. Thank the giver and link back to the blogger who gave it to you.

2. Reveal your top 5 picks and let them know by leaving a comment on their blog.

3. Copy and Paste the Award to your blog.

4. Have faith that your followers will spread the word and love to other bloggers.

5. Have fun.

I like #5 the best, since I don't do well with rules!
As a matter of fact, I don't normally
follow the rules at all,
but I'm going to make an exception this time. :)

So, here are my picks.
They aren't specifically allergy blogs,
but they are all blogs by women whose
familes deal with allergies and food restrictions:

1. Andy, Kiara & Family: Kiara's son, Keandre not only deals with many food allergies, he also has Eosinophilic Gastrointestinal Disease. Kiara writes about Keandre's struggles with that disease, and life as a busy mom to her four beautiful children!

2. My 4 Sweetums: Dawn has a child with a very restricted diet and writes about homeschooling and parenting children with special needs. Dawn is a wealth of information when it comes to homeschooling ideas; she's the homeschool mom I would love to be!

3. The Chaos and the Clutter: Sharla has a large family, including a child with allergies, and she writes about homeschooling, special needs parenting, and, of course, chaos and clutter! She also has a great site called Adoption Magazine, where she and guest bloggers share all aspects of adoption. Sharla just published her first book, That These Two Will Live, which I will be reading very soon! It's the story of their fight to bring two of her children home from Ethiopia under very trying circumstances.

4. GFCF Allows Coffee: Kari feeds her children a gluten-free, casein-free diet to help alleviate some of the symptoms of FASD (Fetal Alcohol Spectrum Disorder). Kari has a great sense of humor and some great recipes! That's a great combination, in my opinion!

5. Life With Food Allergies - I only started reading this blog fairly recently but it's by a mom who has children with life-threatening food allergies, asthma, eczema, environmental allergies, and more. She has some delicious-sounding recipes and lots of great information on food allergies.

Living with allergies and food restrictions
is sometimes daunting,
but I can't even imagine doing it without these ladies.
Even if they don't blog specifically about food,
I know that they understand, and that, when frustrated,
I can always shoot them an email
saying:

"I just want to be able to go to a drive-through
instead of always having to
plan every last detail of our food!"

That way, I've gotten it off my chest,
I feel better, and I can go about my day again!

So, a big thank you to all of you!

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Another (Gluten-Free) Birthday Party!

Yesterday, in the final day of celebration
for GracieGirl's birthday,
we had a family party at our house.

GracieGirl loved this dress from her aunt,
especially because it came with a
matching dress for her baby doll.



GracieGirl was actually tired of cupcakes
after having them several times this week,
so we opted for gluten-free brownies.
We cheated and used Betty Crocker Gluten-Free
Brownie Mix. Everyone thought that they were
really good and couldn't tell that they were gluten-free.





I don't have a picture, but we also had
Food by George's Brownies, which are a
longstanding favorite. They're premade,
so we try to keep them in the freezer
for emergencies. They are also soy and
corn-free, unlike the Betty Crocker's.
They are, however, processed with products
containing tree nuts, so they're not safe for E.

We tried Let's Do Gluten-Free
Ice Cream Cones for the first time,
and even the picky eaters ate them!
They are also soy-free.



One of GracieGirl's newest loves
is Lego Friends. She got several
sets for her birthday, and I was amazed
at how she built every one without
any help at all. This was the largest set,
almost 200 tiny pieces. She was very
proud of her accomplishment!



She loved her new dress so much that she
wore it to church today with a sweater.

As crazy as it's been with all of the celebrations, it was so worth it because GracieGirl is so sweet and appreciative. Every little thing made her happy, and I loved seeing her face light up at each show of attention. Birthdays haven't always been easy in our house, so we didn't take any of this for granted!

Now I'm ready for a quiet week...except that tomorrow is the 100th Day of School party, and Tuesday is the Valentine's Party and GracieGirl's Gotcha Day!

I should know better than to expect a quiet week! :)

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Candies and Parties and Fears

I've lost count of the number of emails that have gone back and forth between E's and GracieGirl's teachers and myself this past week.

Why?

In our case, it's complicated by the fact that both children are in multiple classrooms, so there are several Valentine's Day parties and lots of teachers involved.

Once again, I'm wishing I could be one of those moms who just send their kids off to school without a second thought about parties and Valentine's candy. On that note, I read a really good article today:

10 Things to Know about Food Allergies in the Classroom
by Gina Clowes of Allergy Moms

One of the things that really resounded with me was the Balancing Act, where she talks about how we, as parents, have to do everything we can to keep our children safe, while also letting them have as much of a normal childhood as possible, adding that, with kids with severe allergies, there are no do-overs.

With GracieGirl, if she eats wheat, she'll be itchy and uncomfortable and may have a stomach ache. With E, if he eats tree nuts or peanuts, he can die. So yes, I am a pain in the butt when it comes to checking and rechecking what he eats at school. It may look different for you and your child, if your child has mild allergies, but it's a whole different ballgame with a kiddo with life-threatening allergies.

The article also talks about people feeling that we're overly anxious when we won't let our kids eat baked goods. I remember, shortly after E was diagnosed, being at a party and someone offering him a rice crispy treat. I said that I didn't know what was in it and that he was allergic to nuts. She gave me a "you are being way too over-protective" look, saying that no one ever puts nuts in rice crispy treats. I felt bad because, like I said, E had just been diagnosed and this was all new to me. Now I don't bat an eye if someone makes a comment like that. He doesn't eat baked goods; end of story. Oh, and people certainly do put peanut butter in rice crispy treats! ;)

I just stopped to reply to another email from a teacher about Valentine's candy. I love that my kids' teachers go the extra mile, but that doesn't mean that my kids are safe. I'd mentioned the story of the boy who survived an allergic reaction to peanut butter at school by being put on a heart-lung bypass machine; here is another story with more details, including how he came to eat the peanut butter. In both his case, and in the tragic case of the little girl who died in Virginia, the foods were brought in by another student.

On Valentine's Day, I have to worry about the candy that E's classmates may give him. His school is peanut-free, but tree nuts are allowed. I don't even want him touching anything that has tree nuts in it. In addition, we also have to take away most, if not all, of the candy that his classmates give him, which leaves us with one sad little boy.

The article ends by saying, "If you are one of those parents who goes the extra mile to bring the “safe” brand of chips or chocolate, or who tapes trinkets to your child’s Valentine cards instead of candy, then you are my hero too."

I couldn't agree more!

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Bribery Week

We've learned that the key to successful parenting is bribery.

Some people may judge, but for us, it's all about survival. :)

Monday was the allergist for Jay and GracieGirl. Jay's dust mite allergy is off the charts. I haven't found a free housekeeper yet and allergy meds aren't cutting it, so the good doctor (he's one of the few that I actually like, even if we don't always agree) once again suggested allergy shots. I'd told him before that we will never again attempt anything involving a needle unless general anesthesia is involved. However, with the use of bribery, Jay actually had a "test run" shot in the office, and agreed to weekly allergy shots. Unbelievable.

Next was GracieGirl. The doctor is now thinking wheat allergy rather than celiac disease. He ordered another blood test, and then wants to do skin tests again. Bribery will be involved because GracieGirl has had both tests before and knows what she's in for!

E didn't have an appointment but he went along for the ride, and the allergist was very happy that he was in such good shape, just a week after being so sick.

Tuesday morning was E's fasting blood draw morning. He remembered the lab and wanted no part of it. There were tears but no screaming, so it could have (and has been) worse. Thank you, bribery.

Tuesday afternoon was Jay's appointment with his autism doctor. There have been many issues recently, but the doctor didn't get to witness any of them. Why? Because Jay knew that, after this appointment, he was getting his reward for surviving the allergy shot the day before!

One of the behavior therapists is here every Tuesday evening for Jay and E, and last week, she pushed Jay a little bit too hard for his liking. So he was not at all cooperative with her this week (understatement). She appreciates bribery and my guess is that she'll need to start using it again with him!

Wednesday was reading support and then the chiropractor for Jay, but he actually tolerates those two, so it was all good. He also had reading support on Monday and again yesterday. He's doing amazingly well, and even though he doesn't love going there (his teacher stopped giving him chocolate after each lesson!), I know that he's proud of his accomplishments.

Right now, Nate and Jay are seeing the orthodontist. Nate's appointment won't be fun, but this will be a particularly tough appointment for Jay. I had to figure out that fine line between telling him enough so that he's prepared without telling him so much that he's riddled with anxiety. He took two doses of a sedative prior to the appointment, so I'm just praying that it works.

Nick gets Father of the Year Award for taking the kids to every single one of these appointments (I was conference called in for a few of them), in addition to social skills classes, a school board meeting, two homeschool classes, youth groups, kids' groups, and soccer!

Finally, I have the quote of the week. I'm going to keep it anonymous, although most people who know my kids could easily guess who said it. It was said at an appointment to one of the doctors who loves to inquire about bowel issues. Every single time, the response has been that there are no problems. This response: "Well, yesterday I had a poop that was the size of a wedding cake!"

All I can say is that if we ever lose our sense of humor, we're in trouble!

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Vanilla!

I love using vanilla beans and am always on the lookout for recipes with vanilla that suit our allergies.

I got this one for vanilla pudding from Kari's blog, and adapted it.


GFCF Vanilla Pudding

2 2/3 cups coconut milk, divided
1/2 cup vanilla sugar*
1/4 cup organic cornstarch
1/4 teaspoon sea salt
2 vanilla beans, seeds removed
1 large organic free-range egg

Slice down the sides of the vanilla beans and scrape out the seeds. Save the beans.

Combine vanilla sugar, cornstarch, sea salt, and vanilla seeds in the bottom of a medium-sized, heatproof bowl. Gradually whisk in 2/3 cup of the coconut milk, a little at a time; then whisk in the egg. Set aside.

Bring the remaining 2 cups coconut milk and the vanilla beans to a boil in a medium saucepan. Once it is boiling, remove vanilla pods, and very gradually add the coconut milk to the mixture in the bowl, whisking constantly.

Return the mixture to the saucepan, stirring constantly with a wooden spoon. Once it comes to a simmer, cook one minute longer.

Pour into a bowl. Place a piece of waxed paper on top of pudding to prevent a film from forming. Cover and chill in refrigerator until set, about 2 hours.

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Another vanilla treat we had recently is Hot Vanilla. So good on a cold day...

GFCF Hot Vanilla

1 c coconut milk
2 tsp vanilla sugar*
½ tsp cinnamon
2 tsp vanilla extract

Mix vanilla sugar and cinnamon in a small saucepan.
Add vanilla extract, stirring until dissolved.
Add coconut milk; stir. Heat gently until warm, stirring occasionally.
Pour into a large mug and enjoy!

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*Vanilla Sugar

2 vanilla beans
2 cups organic sugar

Place sugar in a large mason jar.

Slice down the sides of the vanilla beans and scrape out the seeds. Add to the sugar. Add the beans to the sugar. Cover the jar and shake well. Let sit for a couple of weeks, shaking the jar occasionally to mix.

If you don't want to wait for weeks, Kari also shared in this post how to make instant vanilla sugar. I made it and it's wonderful, but I didn't use it in the pudding because I already had vanilla sugar made up. I don't see why it wouldn't work in the pudding recipe, though.

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Food Allergies and School

I read this story today about a seven-year-old boy who was allergic to peanuts and nearly died after eating them at school.

I know I talk about food allergies a lot but I didn't fully understand the seriousness of them until we started living with them, and I want to help others understand, too. Even if you don't have a child with allergies, you could be instrumental in helping an allergic child, which could save his or her life.

This boy's mom did everything right. She sent her child to a peanut-free classroom. She went in and approved the snacks that were safe for him. Still, while eating a snack and watching a movie in his classroom, he ate peanuts. Another child had a peanut butter granola bar and it somehow ended up on this boy's plate. In the dark, he reached for it and took a small bite.

He was fortunate because he initially reacted with only an itchy tongue and a stomach ache, and then had a delayed reaction, which is extremely rare. Usually, reactions occur almost immediately. Only after arriving at the hospital did this particular boy break out in hives, his throat tightened, and his lungs started shutting down. He was put on life support, a heart-lung bypass machine, and he survived.

Tragically, a little girl, also seven years old, didn't survive when she ate peanuts given to her at school by a classmate, just a couple of weeks ago. Again, her mother did the right things. She had an allergy action plan at school for her daughter.

I'm thankful that the people at E's school understand the severity of his allergies and take them seriously. His school is peanut-free, he takes his own food and has a supply of snacks at school. The school contacts us regularly to check on ingredients for projects or special occasions.

Still, I worry. His school is peanut-free, but he's just as allergic to cashews and other tree nuts as he is to peanuts. And, all it takes is a classmate to give him a bite of something. It's a fear that every parent of an extremely allergic child lives with.

What strikes me in the case of the two children I mentioned is that an EpiPen and Benadryl weren't administered. In the case of the little boy, 911 wasn't called and he went to the hospital with his mother, rather than in an ambulance.

It seems to me that, with more and more children having life-threatening allergies, there should be consistent allergy plans in all schools. They're trying to pass a bill in Virginia that would put EpiPens in all schools. Why aren't all states doing this? EpiPens can mean the difference between life and death. The EpiPens and Benadryl need to be easily and quickly accessible, and all school personnel, including substitute teachers, should have a clear understanding of which children are allergic, and how and when to administer the necessary meds, and to call 911 first and the parents second.

When E first reacted, I instinctively gave Benadryl and called his pediatrician, who told me to take him to the hospital. If, God forbid, he ever has another reaction, I will give the Benadryl and EpiPen and then call an ambulance, rather than taking him to the hospital myself. Even though I was very familiar with food allergies, I had no clue about how serious they could be. Now I know. Educating more people about them can mean fewer little lives lost to them.

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Fun Junk Food

GracieGirl was having a tough time not eating wheat when there were so many goodies around over the holidays. I wasn't feeling well enough to do any baking, but I decided to try this quick and easy idea, knowing that we'd pay for the effects of the artificial colors later! We did, but they had so much fun that it was worth it.

We made Marshmallow Pops by inserting extra long
lollipop sticks into marshmallows and dipping
them in melted white and/or dark chocolate.
The kids then rolled them in their choice of sprinkles.

Easy enough for me to handle, and the kids loved them!

If I was a wealthy purist, I would have made homemade
marshmallows and used natural sprinkles.

But I'm not,
so I didn't.
:)

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Adventures in Cookie-Making

I continue to hang on to Normal Rockwell imagines, especially when it comes to the holidays. One would think that I would have given up on that years ago.

We decided to make Christmas cookies. Roll-out cookies, to be precise. I pictured candles burning, Christmas music playing, the family gathered around the table, laughing and making cookies together.

It was originally Jay's idea to make cookies, and he'd searched online for a recipe. He found one and printed it out, and was later devastated to learn that it was a regular sugar cookies recipe, not a roll-out recipe. (Totally not his fault; the recipe pictured roll-out cookies!)

Meltdown #1.

That was a couple of days ago. We made them anyway, with the promise that we'd also make roll-out cookies.

It took me two days (recovering from making the first batch) to make the roll-out cookies. Jay and I made the recipe, and then we all sat down to roll out the cookies. Within minutes, I noticed that GracieGirl became agitated. Then, she started flipping out, scratching at her arms, crying because they itched so badly. It was driving her crazy, and we quickly gave her medicine and took her upstairs for a bath.

As a baby, GracieGirl couldn't handle gluten. She didn't have gluten for several years, and then we reintroduced wheat. It wasn't a conscious effort, really, more just laziness on my part. She seemed to do fine with it, but slowly started having some symptoms again. The allergist was sure that she had Celiac Disease, and he ordered a blood test. He was very surprised when she tested negative.

In the past week, she's had some symptoms again, although we hadn't associated them with gluten. One day, she came in with a huge hive on her face. I gave her medicine and it went away. The same thing happened the following day, again, just one hive. Another time, she started crying because she said that she itched all over. Again, we gave her medicine and a bath, and she seemed to be okay. The backs of both of her legs are covered with eczema, which comes and goes but is currently back with a vengeance. She's also had a lot of GI issues.

This latest incident just kind of firmed up that it must be the wheat. She was fine until she started rolling out the cookies, using wheat flour to roll them out.

She's feeling better now. I made some Monkey Munch for her, so she wasn't too sad about not having the Christmas cookies.

Time to go pull out my GF cookies recipes!


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E's Egg Challenge

E finally had his egg challenge yesterday. I scrambled up six eggs and sent them, along with a bottle of ketchup (yes, E is one of those people who puts ketchup on everything!), with Nick and E to the appointment.

The appointment generally lasts for about two hours, while they expose E to more and more of the eggs. At one point, he started gagging and had some trouble eating them, so the doctor kept him for an extra hour, just to watch for any more reactions.

In the end, he sent E home, saying that he's no longer allergic to eggs and can go ahead and eat them.

Last night, E announced that he had to throw up. He was finished by the time I got in there, and I asked him if he threw up his dinner. He said no, he'd just thrown up his germs.

Sure, whatever.

So...as the sun was just rising this morning, I was awakened by: "Mommy! Daddy! Wake up! It's time for me to have my eggs for breakfast!"

Then he had a meltdown because he didn't want them cooked; he wanted to crack them and eat them raw!

Give me strength. ;)


We had two eggs left in the house, and Nick fried them up. E was thrilled! He sat at the table, while Nick grabbed the camera to record the momentous occasion. E took his first bite...

and promptly threw it up!

I called the allergist, who felt that it was more of a taste/texture issue than an allergic reaction. He said not to give E any more plain eggs, but to try them in pancakes or french toast.

E is excited about the pancakes...but now says that he doesn't like eggs!

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