Tuesday, December 14, 2010
For those who are interested in making it, the recipe is below. I made a couple of changes: it calls for warm water & instant coffee granules, I just put in warm coffee. Bethany is allergic to honey so we use agave nectar - both work well. I make it in my mini-loaf bread maker and it works great. You can make it either in a regular bread maker or the traditional way of making bread. I put the ingredients in the bread machine in the order they are listed, then do it on the light crust setting for basic bread:
1 c. bread flour (I use a 100% wheat all-purpose flour)
1 c. whole wheat flour
1 T. sugar
1 T. unsweetened cocoa
1/2 t. salt
1 T. softened butter
1/4 c. agave nectar
3/4 c. warm coffee (I use decaf just in case it doesn't cook out!)
2 t. yeast
Monday, November 29, 2010
(And thankfully, Pirate's Booty is still a safe food - woohoo! It has sunflower oil in the ingredients, but the rep I spoke to said they haven't used sunflower oil in ages)
The other day at the doctor's office, he offered a "sucker" to both of my girls. Needing them to be distracted for a few minutes more I said sure. All lollipops so far have been safe. Well, he brought in a Tootsie pop. As Bethany had the thing unwrapped by her mouth, I'm reading the tiny tiny print on the wrapper. Sure enough, it has soy. In a fit of desperation, though, I'm assuming it is the tootsie center that has the soy, so I tell her she can just lick the outside. If worse comes to worse, her only reaction would be she would be a snot for a few days. She just gave me this look and wouldn't lick it. The doctor kept telling her to go ahead, just don't eat the middle. Finally I said, "Honey, you don't have to eat it if you don't want to," and she gratefully handed me the lollipop and went back to her coloring. No regrets about not getting one - and here I was prepared to tell her she could have one when we got home (I have an emergency stash for bribes). She amazes me - she knows how it makes her feel and would much rather go without than get that treat and feel awful! It never seems to bug her that she can't have what other people are having. If I ever have a day where I am stressed about it, I just need to look at her and her attitude towards it all.
And my picky eater is feeling adventurous! She has been talking for ages about trying to make a pizza that she can eat. And yesterday I was eating some potstickers and she wanted to try them. When I explained all the things in them that she can't have she said, "Maybe you can try to make me some that don't have all of those things in it?" This is the child who NEVER wanted to try anything new, ever!
We just took a trip cross-country and I kept thinking of how much harder it would have been to have taken it last year. She was content and happy throughout the whole trip. People ask me how I manage to deal with her diet with so many restrictions, and all I can say is I'd do anything to keep this little girl around...managing her diet is worth it a thousand times over!
Saturday, November 27, 2010
Lately, though, I've been enjoying her so much (and not enjoying my third pregnancy) that I haven't been very diligent in testing new foods. So I was a little blindsided when she started having behavior problems again.
We spent Thanksgiving on the opposite coast at my parents' house. They had the big name-brand raisin bran and Bethany wanted to try it. I couldn't see anything in the ingredients that she couldn't have, so we let her try it. She loved it and ate it the whole trip with no problems.
When we came home, I promptly restocked my pantry and bought some raisin bran - same brand. Bethany started having behavior issues that day, but since we had just spent a week in a time zone with a 3 hour time difference, and had several late nights and skipped naps, I just assumed she was worn out. By the 3rd or 4th day of nonstop whining and a few crying jags where she would tell me things like, "I'm just so sad, I don't know why," a red flag went up. She also started refusing to do things herself, like get dressed or use the restroom. The only thing I knew that she had that was not part of her normal diet was the raisin bran, but she had had it the entire week of Thanksgiving with no problems. I was stumped. In any case, I checked the ingredients again and noticed one ingredient I knew nothing about: malt flavoring. When I googled it, I noticed it was most often made from barley. We took her off the raisin bran right away and I contacted the company to see what they used in their malt flavoring.
A few days later, with my daughter's demeanor restored, I received a reply that said they sometimes used barley and sometimes used corn for their malt flavoring. So, that might explain why one box was ok and the next box caused problems. And now I know she can't have barley. Or malt flavoring.
Wednesday, October 27, 2010
Ammonium Lauryl Sulphate
Organic Sodium Cocoate
PEG - 7 Glyceryl Cocoate
Sodium Cocoyl Isethionate
Sodium Laureth Sulfate
Sodium Lauroyl Sarcosinat
Sodium Lauryl Sulfate
Vegetable Cetearyl Glucos
Yeah, good luck memorizing that one! I looked at all the soaps, shampoos, toothpastes, etc. that we use and they ALL have some sort of coconut derivative! Basically you have to find a list of products that is known to NOT have coconut in it and go with that. So I'll call the allergist with my above questions. Sheesh, I sure hope I don't have to cut out topicals.
My other item is I am going to have to post a complaint in our neighborhood newsletter. Somebody has been smearing some unknown substance on our jungle gyms at our neighborhood park. From what I can tell, it is chocolate icing...but a lot of icing has eggs. What if she touched it and had a severe reaction? I also know people in our neighborhood put out whole peanuts for the wildlife. Which means animals drag peanut shells all over the place. Luckily we don't have to worry about that but I have a friend who is moving into our neighborhood who does! People just need to be more aware of the consequences to actions like this. Unfortunately, there is still a population out there that thinks this food allergy stuff is all bogus and we are neurotic mothers getting our panties in a twist over nothing.
What has happened in the past several months?
The Sniffles: The allergist was very interested in her constant sniffling. We had to endure two different nasal swabs, a sinus x-ray, and 3 different medications. The third medication did the trick and no more sniffles - although it REALLY affected her behavior so fingers crossed we don't have to go through that again! Who knows what the cause was, but we'll keep an eye on it.
Food changes: As I am learning, food allergies are an ever changing and evolving entity as you discover what does and doesn't work. We noticed Bethany's behavior was still being affected by something but we weren't sure what. One theory I had was she was sensitive to annatto - which is used as a food coloring but is derived from a seed. With her watermelon weird thing and the questionable latex issues, we went back in July for more testing. What we learned: watermelon is ok. Annatto is ok. Latex is ok. Cumin is not. So not only seeds but spices that are made from seeds are out. But what is still affecting her behavior?
Food trials: we successfully added peanuts back into her diet. The first day I gave her peanut butter she wanted to put it on everything! We also successfully got wheat back in her diet again. That is a huge relief: things like mac & cheese, chicken nuggets, etc. were added back in. I am still holding off on annatto because I'm not 100% convinced but we'll add it back in eventually. We are currently adding green peas back in her diet (she is SO excited to eat them again, atta girl!) and so far, so good. It looks like all of the things in the "low" category may be just fine. Fingers crossed.
There were still some behavior issues - usually after snack products like chips or popcorn - so on a whim I tried eliminating seed oils. Within a couple of days her behavior improved. So...even though the doc says they should be fine, I'm going without for now.
We had another big reaction to a dessert I made the other night - fresh peach pie with local peaches with coconut ice cream (since I am dairy intolerant). Big reaction for her - no epi pen needed, but it was out and ready to go! The Benadryl luckily did the trick. But back we go for more testing. It was the coconut (not the peaches, cinnamon, or nutmeg) - HUGE reaction to coconut and coconut milk!
I also asked about the seed oils, and the doctor said if it is a major company, it should be ok because they have to pasteurize the giant vats of oil. If it's a more "natural" product, it may have expeller pressed or cold-pressed seed oils which means the protein allergen is still in the oil. I can't believe the learning curve for all of this! So for now we will be trying one product at a time to see if it elicits any behavior issues.
Looking back on my old posts, I do have to say we've come a long way! Bethany is more likely to try new things than she ever has in the past - although it's taking me a while to catch up to this idea...I still assume anything new on her plate will constitute a global meltdown. She is much more likely to eat what I put in front of her instead of having me cajole her into eating through the entire meal. Her behavior is also much more predictable and what you would expect from her age. Life seems much more "normal" with her now!
She also started pre-K in September. I take a snack for her everyday instead of her eating what is supplied. Bless her heart - even if the teacher offers her what the other kids are having, like apples, Bethany tells her she has to eat HER snack because the other things might have eggs in them. :-) Also, the class moms know to call me if there is going to be any sort of special snack for birthdays or holidays. I want her to have as normal as a childhood as possible, and I can just see it now, "Mom! All the kids had cupcakes and I had to eat carrots!"
Again, I am so lucky that she is not as sensitive to some of these foods as other kids are that you hear about in the news and such. It means she can be around these other foods without too much fear of a major reaction.
That's all my brain can regurgitate for now from the past few months. I'm off to see if I can figure out how to make "sticky" posts so I can make one that keeps her allergy list current...
Thursday, June 10, 2010
We were having dinner the other night and Bethany was eating a watermelon slice. She had juice all over her face, and then I started noticing it wasn't just juice. I tried to wipe it off and she had little pinpoint hives all over her face. Argh. Who knows what it was...watermelon? Or reacting to the fact that Matt & I were eating mustard even though we were being super-duper careful?
I was convincing myself it was watermelon, since that is a common one. But we gave her some more yesterday and no hives. BUT...I had just given her Benadryl because she got one big hive while playing at a friend's house and then 30mins later had a bunch of little ones all over her face...so who knows if the Benadryl was masking a reaction to the watermelon?
This stuff really makes one mental some days.
So we have another allergist appointment. Not until July because 1) the doctor is booked out far and 2) I promised her no doctor appointments on this month's calendar.
The allergist wanted us back in, anyway, because she has a constant nasal drip. There were no white blood cells in her nasal mucosa (which I believe would indicate an inhalant allergy??) so we tried a steroid nasal spray for two weeks. She still has the sniffles so back we go. Until then I have a food journal to see if we can figure out these mysterious hives.
So no wheat for now. But wait, there's more...we started tree nuts at the same time as wheat so it could be that instead. I have a book that goes in depth into elimination diets, and even breaks it out to single food elimination diets versus multiple food elimination diets versus rotation diets (whatever that is). So I will read up on that and then try wheat and tree nuts separately.
Tuesday, June 1, 2010
So we tried noodles. She doesn't want them (they're different). She doesn't want anymore of that homemade bread. She doesn't want any different cereals. FINALLY we get her to eat some tortillas. So far, so good. We'll see what 24 hours shows us.
Everything I've tried making her has been rejected. I'm getting frustrated, but continue to hope that her picky eating has been because eating has made her feel bad in the past .
I also started giving her tree nuts again, since the allergist said she had no signs of being allergic to them (we didn't test them, just from anecdotal evidence). So I worry about if adding tree nuts to her diet at the same time as wheat might be an issue - if she starts having behavioral issues again do I blame the nuts or the wheat?
And then I noticed one of the nut containers said they might be roasted in cottonseed oil. That's a seed, but the allergist said oils are ok. But then I read some oils are ok, some aren't - it depends on if the seed was cold or hot pressed when processing the oil. Huh?? Really??
And then she complained a while back of her mouth itching after playing with some balloons. And after she had a bandaid she had a rather mad-looking rashy area underneath. So now do I suspect latex?
Seriously, your mind can start going overboard until steam comes out of your ears when you deal with this stuff! It is like a "what-if?" game that your mind continuously plays with itself. And then every little behavioral hiccup she has sets my brain off again ("Was it the wheat? Is she just tired?")...some days I wish we could just go back to the allergist and have her tested for ALL major allergens. Just poke her with EVERYTHING. And then I ran into a friend that said the skin tests aren't always 100% reliable - people can have false positives. Honestly.
Monday, May 24, 2010
We didn't tell Bethany where we were going - she is so freaked out about needle pokes now, and she has been adamant that there were no more doctor appointments on the calendar. So we went to her preschool to do school photos, and then tried to sneak our way downtown to the allergist's office. She did start to ask in the car and we were honest with her, and she just cried and insisted that she was all done with doctor's visits because she went THREE times already and there were only TWO on her calendar! We were able to tell her we were mostly just going to ask questions about what she could eat, and we would ask when we got there if she was going to get pokes...that definitely calmed her down. I'm amazed at how much more she is able to grasp things now - she used to seem so confused by a simple conversation like that.
I saw a 6-month old baby in the waiting room. Poor parents, I should have said hello but was too chicken.
Bethany did great, she was a champ through the whole thing. She was a bit emotional when the nurse brought in the materials for the testing, and Bethany was frantic trying to get her attention: "Excuse me, excuse me, excuse me...um...doctor?? Doctor? I have to ask you something!" She just wanted to make sure she was going to get a band-aid afterward! Bless her heart! This is amazing to me...a couple of months ago and she would have just been whining and wailing (and yes, she got THREE band-aids!).
The good news: we get to reintroduce the foods that she tested super-low for, starting with wheat! WOOHOO! My mind just started reeling with all of the foods I could give her again: chicken nuggets, fish sticks, GOOD bread, noodles, cereals, etc. etc. You probably have no clue how much wheat is in your diet until you try to cut it out.
The bad news: she tested positive - strongly - for all of the seeds we tested. So all seeds and members of the seed family (mustard) are out. But...after hearing I can get wheat back, I can handle seeds!
So the idea is to slowly give her wheat in her diet and wait a couple of weeks to see if we see any behavior changes or reverting back to who she was a couple of months ago. Which can be tricky because if she's having a bad day we'll now wonder, "Is she having a bad day or is it because we fed her wheat?" The mental process of all of this can be exhausting in and of itself. If we see no response, we can try another food she tested low for, probably peanuts next. The allergist wants us to start with the "big" allergen foods first to get them back in her diet if we can.
And my allergist is great. She is like a dream doctor. She sits in there and answers all your questions, chats about things, she is GREAT with kiddos, etc. etc. I love it when I can find a great doctor! She even joked as we left, "Thanks for staying the whole day with me!" It was only an hour and a half, but in the medical world that is a HUGE amount of time for one patient!
Bethany had fishsticks for lunch. :-)
She gave me quite a scare the other day in Target - she ran off and then got lost for a long enough time that we both were quite freaked out and I was 2 seconds away from trying to find a staff person to sound the alarm. Then that same evening we attempted our first restaurant visit (taking her own food with us) and while my husband was walking the girls around with all of their pent-up energy, she ran out of the restaurant! It feels kind of odd having to teach a 4 year old about not running away from her parents! It was never in her nature to do this before, so have never been conscientious about keeping tabs on her before now.
She also has developed a big opinion about what clothes she wants to wear. I know most people deal with this battle daily, and at a much younger age, but I was blissfully dressing my child in whatever I wanted. And...I was the one dressing her! It used to be a daily battle just to get her to put on her clothes by herself. Now she wants to pick them out and put them on without a lick of help. And lately all she wants to wear are dresses. She owned all of ONE dress when this started! And, of course, it is still 40 degrees in the morning when she wants to put on her sundress.
I know some might think this could just be normal developmental changes, but I have a hard time believing all of these behaviors started during the same month...who knows?
Unfortunately, we were met with failure after failure. I gave up after 6 loaves. Most of the time the baby would eat it, but one loaf even the dog didn't want.
One of the recipes my husband and I both loved - but alas Bethany did not. Well..she SAID she liked it but we could never get her to eat another bite. I think part of the problem was it had a lot of air pockets and a slightly sour after-taste, which I believe both happen from yeast. So I am going to mess around with the recipe a bit and lower the yeast and maybe add more baking powder. Anybody out there have any ideas?? The other bonus to this recipe was it was the easiest to make!
Also, my picky eater tried EVERY ONE of my breads! Who knew she had no qualms about trying something new so long as it resembled bread?
In any case, the recipe I loved was Mark Engelberg's Gluten-free, Soy-Free, Dairy-Free, Egg-free Vegan bread. Another blogger wrote about it: http://aprovechar.danandsally.com/?p=228 - if you need to know my adjustments for the mini breadmaker, shoot me an email!
Here is the recipe:
Mark Engelberg’s Gluten-Free, Vegan Bread
Recipe for 2 loaves—it is okay to halve the recipe if you want to make just one
Note: If you are using a mixer that doesn’t have a great engine, you may want to mix it by hand at the end to ensure it’s all mixed. Since there’s no gluten to get tough from overmixing, you can mix until you’re confident.
In a large mixing bowl combine:
1 1/2 cups millet flour
1/2 cup teff flour
1 cup sorghum flour
1 cup cornstarch (or double the potato starch if you can’t eat corn)
1 cup potato starch
1 cup tapioca flour
4 tsp xanthan gum
1 Tbsp salt
1/2 cup sugar
2 Tbsp active dry yeast (not rapid rise)
4 tsp olive oil
3 1/4 cup warm water (not hot)
Mix with electric mixer–using paddle attachment, NOT regular beaters or bread hook–for two minutes. The bread dough will be more like cake batter than traditional bread dough.
Two options for the rising:
For the best rising: While mixing the bread, create a proofing box from your microwave. Microwave a small mug or ramekin with water until the water boils. Leave the water in the microwave. Pour the bread dough into two nonstick or well-greased pans. Tuck the loaves into the microwave with the water—the container of water should not be touching the pans. (I have to remove the turntable in my microwave to do this.) Allow to rise until batter extends a bit over the top of the pans–generally 30-50 minutes.
Standard method: Pour into two nonstick or well-greased loaf pans, place on a warm surface (such as on top of the pre-heated oven), and cover with a towel. Allow to rise until batter extends a bit over the top of the pan–generally 50-70 minutes. (Batter should take up about half the loaf pan before rising.)
Bake at 400 degrees for 10 minutes. Remove loaf pans from oven and cover with aluminum foil. Return to oven and bake for an additional 35-45 minutes, depending on your oven. (Insert a toothpick or knife into the center to see if it comes out clean or doughy, if you aren’t sure when you pull out the bread.)
As with most breads, it is easiest to slice if you allow it to fully cool. But who can wait that long? I usually let it cool for a little bit, and then remove the loaves from the pans and place them on a rack to cool more while I slice it up. The bread tastes delicious warm, dipped in olive oil and herbs or spread with honey and ghee. It also works well for sandwiches after it has cooled. If you won’t be eating it within 2 days, after it’s cooled, slice it, wrap it in a couple of layers of plastic wrap, and freeze it. Never refrigerate this or other bread—it will get dry and hard if you do. If you leave the bread on the counter (wrapped), it will be good for all purposes for a couple of days. After that, it will be best used for bread pudding, French toast, croutons, etc.
Monday, May 17, 2010
Thursday, May 13, 2010
Others have noticed it as well. Her school has commented on how happy she is, and our church nursery workers commented on how much more energetic & talkative she was. The other moms in the playgroup saw it firsthand, and told me they had thought maybe I was exaggerating but now they saw I wasn't!
The other good news is the Celiac testing is NEGATIVE! It was just the screening blood test, but knowing this is a big relief. In my internet browsing last night, however, I found one gal's blog who said multiple allergies still mean some sort of GI disorder. So I might dig around more to see if I can find anything on that (because you know bloggers know EVERYTHING, right??).
I feel like Bethany's eating has improved as well. So far we have only had success with quiona & corn noodles with butter (she won't try a mac & cheese sauce with them), but she is asking for more foods than she ever did before. Could she be realizing (even if subconsciously) that food doesn't hurt her anymore? Is she actually getting more hungry now that her body is healing? She wanted blueberries the other night for dinner, and she has refused to eat blueberries for ages. At lunch she wanted apple, pineapple & yogurt - foods I usually have to really push on her! She is also happy to eat, which I usually have to really coerce her to do. And the other thing that just seems bizarre to me - she wants milk ALL the time! We used to have to really push a few ounces of milk at bedtime, now she just wants a cup of it around all day to sip on. Weird, but good!
Other changes: she wants to play outside a lot now - we used to have to drag her out. She still likes watching TV but wants to bounce on the couch the whole time. She wants to dress herself, put her own shoes on, and do bathroom duties all on her own...she used to whine and whine for me to do them for her! She wants to hug and kiss and snuggle with everybody all day long. Dare I say I even see attempts to be nice to her little sister? :-)
The biggest struggle with her behavior now is she has so much energy it is hard to get her to come down a notch to do things I am asking her to do, but I won't complain about that! And I certainly am willing to do ANYTHING with her diet if it means I get to keep this little girl! I feel like I am falling in love with her all over again.
I'm still hunting for foods (other than snacks & cereal) that she will try. We over-did the bacon a bit at first so she's not really wanting that at the moment. I tried a new bread recipe but remembered AFTER I made it that the egg substitute the recipe called for was tofu - made with soy. DUH moment for Mommy! Two store brands have gotten thumbs down as well, and I don't blame her (at least she is trying them!). I can't wait for my bread maker so I can go crazy trying bread recipes. I am going to try a pumpkin loaf next, in the hopes that something more dessert-like will go over better.
I continue to be amazed at the wonderful support from all of my friends. They are sending us links to recipes to try and articles to read. I got a great bottle of wine from another friend - initially it was to help me deal with the stress but now I feel like it will be imbibed to celebrate! I'm still trying to hunt down whomever left those cookbooks for us. Our neighbors said they saw a guy taking them to the door, and was driving a white car...oh sure, that narrows it down! ;-)
I am having a last-minute trip this weekend to visit my brother. Wish my husband good luck in dealing with all of this on his own for two days. I figure, even if she just eats cereal for two days, it's all good! Mommy will enjoy her time off!!
Tuesday, May 11, 2010
I have a completely, totally, 100% different child. She is not even close to the same child she was 5 days ago! She is sooo happy and easy going and listens well and doesn't throw tantrums and isn't whining nonstop, etc. etc. I will slave over a stove for 10 hours a day if it means I get to keep this child!! She has always preferred quiet activities - reading books, coloring, puzzles, etc. but lately I haven't been able to get her away from the TV or the computer. She still wants to watch tv, but she does it while bouncing on the couch nonstop! She sounds so much more her age - I was starting to wonder about her development even. She wasn't absorbing new information, or learning about the world around her much. Now I feel like she is a massive sponge. She is talking nonstop. She is happy almost all day. She is showering me with love constantly (hugs, snuggles, kisses, "I love you, Mommy!") -- one of our neighbor friends defined her previous personality as akin to "Sybil" and now she's back to the sweetest girl. I am on cloud 9!
And...dare I say it? I might not have the pickiest eater after all? Usually every meal but breakfast is a battle. Trying to get her to eat has been a daily stressor for 3 years now. Tonight she was happy to eat her entire meal without fuss, and she ate a TON. She even said she wanted to try blueberries, which she has refused to eat in ages. My jaw just about fell open. She is more agreeable to trying something that looks different. Dare I hope???
Monday, May 10, 2010
This morning I poured over recipes - THANK YOU to whomever left those cookbooks on my doorstep for me! Fess up, who are you?? :-) I'm learning about all of the other grains out there: teff, quinoa, flax, sourghum, tapioca, potato starch versus flour, garbanzo bean flour, cracked brown rice, etc. etc. Who heard of these things? I'm learning about complete proteins, since that is the hardest thing to get Bethany to eat. She's not a huge milk drinker, and doesn't eat much meat. She recently swore off my super-yummy beans & rice recipe, which is a shame because it would be perfect. I'm learning about food groups: legumes, different types of grains, etc. etc. I'm learning about different types of yeast, vinegars & egg replacements (tofu, flax, vinegar, bananas). It is overwhelming, because I feel I need to know this NOW in order to get Bethany to eat something other than cereal! And I need to spend an hour in the store, which is extremely difficult with two kiddos.
And then there's the issue of cooking. It takes longer to cook mac & cheese from scratch than from a box. Most recipes with flours have separate recipes for the flour mixture - they all are different mixtures of flours to try to create the best flavor & texture for that recipe. So first you have to make a flour mixture, then the food from scratch. And then after all of this, your child refuses to taste it.
There is the stress of your child not eating.
And then there's the stress of grief. Your child isn't normal. Your child won't have a normal childhood as far as food goes - playgroup snacks, birthday parties, snacks at school...even being conscious of things like playdough! There is a grieving process to go through, an adjustment period. I went through it with the initial egg allergy, but that felt much more manageable than 10 allergies! I am lucky she understands that eggs make her sick, so I can tell her she can't have something because it will make her sick and she is ok with that.
And then you start to think about everything in your house, and I mean everything. What is canola, exactly? Is it related to the grains she is allergic to and could she be allergic to it as well? If she's allergic to legumes like peanuts, peas & soy, does that mean we have to avoid all beans & legume products? Or if those allergies are low do I not have to worry about them? I can't wait until the allergy appointment.
I can do this!
Now, today, I got a call from the pediatrician. He is agreeable to doing the blood test for celiac's disease. Which means another blood poke. And we need to go today, because you can get a false negative if you are off gluten--which she has been since last Thursday. So now I have to take her to get another poke AND explain again that she still has her allergist appointment where they do the scratches. I feel so bad for her, she is such a brave girl but she has been bringing up "no more pokes" daily now.
Her last blood draw was precious and heartbreaking, she spent the rest of the day holding her bandaid. It didn't matter that we told her it was all better, she just wanted to hold it. And she got ice cream afterwards...luckily we still have some birthday cake--that might just be today's reward!
The good news: we got a printout of the results in the mail. The results are on a huge scale from 0.35 to 100. Four of them are super low: wheat, rye, barley, & peas. They all tested ~0.40, just barely showing. I discussed the results with the pediatrician and we both have hope that the allergist may just say not to worry about those foods. Or maybe they are showing up because they are related to other foods she is allergic to. Or maybe we don't have to worry about cross-contamination as much? I am so frustrated that we have 3 more weeks until her allergist appointment. I feel so lost without all of my questions answered, and my pediatrician understandably wants to leave all of those decisions to her.
Thankfully, egg continues to be her only life-threatening allergy. So even if we have exposure, the worst we might deal with would be hives or behavior issues. The worry is if the allergies are new, and her egg allergy gets worse every year, what if these get worse or she develops more? Today she complained of itching on her face and wanted medicine, but all she was doing was playing with some balloons from her party. So of course I start to worry about a latex allergy. Honestly.
One day at a time. I can do this.
Cereal - yes
Noodles - sometimes
Cake - YES
Biscuits - no
Fish sticks - no (they're yellow instead of brown)
Pasta salad - no
Rice toast - no
Homemade white cheddar mac n cheese - no
Score: Me, 2...Bethany, 6
I'll keep trying! I ordered a bread maker and have a ton of bread recipes to try. She won't try anything new, which makes it hard. So I'm starting with just substitutes of what she already likes, only if they are not EXACTLY the same she still doesn't want to try it.
There is a speech therapist in town that is good with picky eaters, after we get through all of Bethany's testing, we might just try her out. But in the meantime, I'll keep trying new recipes!
1. Great friends and family, who provide wonderful thoughts, input, advice & support. I am one of those people that needs to interact with others when I am stressed, and I am so grateful to have a wonderful support group.
2. A wonderful husband - after being exhausted Saturday night after the party and Bethany not eating anything but cereal and cake all day, I had a bit of a breakdown. My husband tucked me into bed with a good book, a bowl of popcorn, and a glass of wine...and proceeded to take care of everything--dishes, kids, etc.
3. As selfish as it sounds, everybody else's allergies! Today it is SO much easier with all of the products out there, cookbooks, website, internet support groups, etc. to deal with this. I can't imagine trying to do this pre-internet and pre-allergy days.
4. She isn't allergic to dairy. She might just be able to survive on cereal and fruit alone...maybe?
5. She isn't allergic to chocolate. If only I could find chocolate-flavored meat we might be in good shape!
6. Her preschool is AWESOME with food allergies!
7. Did I mention my friends? One sent me links to food cookbooks, another left some on my doorstep. One brought flowers, another brought homemade almond butter. Others have called and offered support and advice. Bethany's playgroup agreed to meet at a park instead of my house to give me a little break, and all are bringing their own snacks (that burden is usually on the hostess, which is me this week). Another gave me an uplifting mother's day card. I am so blessed with the people in my life.
8. My Mom, who taught me how to cook, who I can call when I'm upset and get support, who called a family friend who has a teenager with multiple allergies and a husband with celiac, who is looking up recipes for me, and gave me the self-confidence that will get me through this.
9. My church group that is rallying around us with prayers.
10. Bacon! Who doesn't like bacon? Even picky preschoolers will eat bacon!
11. BUT...the most important blessing: MY DAUGHTER IS BACK! Every day she is changing literally before my eyes. Her behavior is a thousand times better! She has more energy - she used to be able to sit in front of the TV all day, easily (if I let her, which I didn't usually!). She still is a TV addict, but she bounces around and gets bored quickly. She is talkative, laughing, silly, dancing, etc. etc. I didn't realize how much I was losing that girl until I saw her bound back. She even LOOKS healthier to me, but maybe that is just wishful thinking?? :-)
Bethany wanted a unicorn party, thanks to her recent re-discovery of a stuffed unicorn my aunt gave her. So we did a unicorn hat craft, wore unicorn tails, colored unicorn pages & played musical chairs (galloping around the chairs, of course!). I decorated the cake with a unicorn, which I am very proud of. I am NOT a cake person, or a crafty person, so I was happy to pull this off. Thanks to one of my friends for coming over early to help with the star border on the cake! The other parents at the party said the cake tasted great - but perhaps they were just being super nice. :-) I didn't think it was too bad, and the kids certainly didn't notice one bit!
My hat and Bethany's hat...not bad for a non-crafty mom!
Bethany wearing her unicorn tail.
It was nice to have a "normal" day, but stressful as little kid birthday parties often are. Bethany only had one small bowl of cereal before the party, so we had a little bit of a blood sugar issue part way through that a box of yogurt-covered raisins fixed! All in all, a great party!
Again, thank God I ran into my friend at the store! We had some cereal that
Another friend came over this morning – I was watching her kids while she ran some errands. I asked if I could run to the grocery store later to get the items I needed for her cake. She and I poured over the recipe and ingredients. Then it occurred to me – what about our oil that is in the recipe? Nope, vegetable oil has soy in it. What about the vinegar? (many egg-free recipes use oil & vinegar) The ingredients just said vinegar from grains. What grains? My whole way of thinking had to change. Everything was suspect. I had to call the 1-800 number on the bottle of vinegar to see what it was made out of - luckily it was made from beets so we were good to go!
I went to our local health food store that has tons of organic and vegan and gluten-free items. I was so mentally drained at this point that when a store employee asked me if I needed help – I blanked! I just said, “I don’t know.” She laughed and said, “Um, ok…do you need help finding anything or do you just want to browse?” I said, “Both?” and after an awkward silence I said I would browse for now but ask her if I needed help. I then started my search for these bizarre items on my grocery list…potato starch (NOT potato flour), xantham gum, etc. etc. I briefly looked through other items and found some rice bread & fish sticks made with corn flakes, not wheat. Success!
Well, no. Remember how she is the world’s pickiest eater? The bread was dry, even when toasted. It had a bit of a sour aftertaste, kind of like an alcohol flavor. I didn’t blame her for rejecting that. Not wanting to waste it, I gave it to my 1 year old. She tasted it and promptly fed it to the dog. My friend brought almond butter to try on the bread that she made from scratch at home (remember I mentioned I have the BEST friends?)…um, no go on that one, but it could have been the bread. I also learned rice noodles are not as good reheated, so I tried sprinkling a little salt on them. I accidentally got a ton on one noodle, which I didn’t realize until
Oh, and did I mention she gets low blood sugars? So we have always catered to her picky eating because letting her not eat out of protest is NOT an option…she ends up in a blubbering heap of tears. There have been times I have literally had to make her eat chocolate to get her blood sugar up enough to eat real food. We always have juice on hand. It has definitely added to our struggle with getting her to eat, because you can’t just tell her, “Well if you don’t eat it, you can go hungry.” Unless you really like self-torture in the form of a sobbing child for hours.
I called the pediatrician today, and left a message asking the nurses to pull up her blood tests and wave it under the doctor’s nose. I was worried about celiac disease, and something I read saying she needed to be eating wheat at the time of the test, otherwise you might have a false negative. He didn’t call back until ; the poor guy had a busy day! And bless his heart for staying late on a Friday night to call patients back! Alas, we missed the call…so we were now on our own for the weekend to figure things out. I also called the allergist’s office to see if we could move our appointment up. They just about laughed at me – the allergist was booked 2 months out. She just returned from maternity leave and was only working 3 days a week. Good for her! But bad for us – we were just going to have to wait.
Like I said, everything was suspect. She got some birthday presents in the mail – what was in silly putty? What was in the dinosaur egg that you could chisel away at like a fossil? Was I going overboard, or did I really have to worry about these things? How was I going to wait 3 weeks to see the allergist? My husband and I pour over the internet, which we all know is SO full of reliable information! (in case you didn’t notice, that was sarcasm there…)
Add to this all the other daily stressors of being a mom. My one year old learned she can open the toilet lid, and I found her brushing her teeth with toilet water. My house is a mess and I have a birthday party to throw tomorrow. My daughter barely ate today. But you know what? My little girl is back. Her behavior changes are DRASTIC. The low blood sugars were in full-force today, but when I could get her to eat, she was so much happier, talkative, energetic, etc. I will do ANYTHING in the world to keep this little girl!
One day at a time. I can do this.
Let’s start at the beginning – a few months ago…no, further than that. A few years ago we discovered our first daughter, Bethany, had a somewhat severe egg allergy. Many people ask how we discovered the allergy – well, the same way many people do – she ate one! She was just over a year old, and I was elated because she didn’t eat a lot of protein. She devoured that egg and quickly signed for more. The next thing I knew, she was covered in hives and crying. My husband was installing a window air conditioner unit with lots of swearing, so I was frantically trying to find some Benadryl for her. I’m a nurse, so I knew what this meant! I found some old liquid Benadryl we had given our dog, and pulled out some reference books I had to find her dosage. She started throwing up and having diarrhea as well. Then she started coughing and had a lot of congestion. Looking back, we should have called 911 and gotten her to the ER. But…she was a very regimented baby as far as naps go and she was due for a nap. My brain wasn’t working. So we gave her the Benadryl and put her down – and I frequently checked on her with a stethoscope.
We quickly learned the ins and outs of dealing with an egg allergy in a toddler, went to doctor’s appointments, learned of food labels, etc. etc. An egg allergy is actually easier to adapt to than people think – many pastas and breads are egg-free, and many recipes are adaptable with commercial egg replacer. Plus, our allergist was confident it was something she would outgrow. After the initial adjustment period, we were feeling pretty good about it all.
Flash forward to a year ago. Looking back, I realize now all of this was allergy-related, but we didn’t know it at the time. We started having a lot of behavioral issues with
Last fall, she broke out in hives a couple of times. Her behavior was at her all-time worst. She had toast when she broke out in hives so we were thinking it was something with the bread and her egg allergy. One day she did have an exposure to eggs, and when she got Benadryl, her behavior was greatly improved – that’s when the light bulb went off in my head that she was reacting to something else (duh, took me long enough!). The second time she broke into hives, my husband said, “Oh, it’s the honey on her toast.” MAJOR lightbulb! Everything she loved had honey in it – cereal, breakfast bars, toast with honey, graham crackers, etc. She ate these regularly. The other thing that made her break out into hives was Utz’s pub mix – lo and behold it had honey in it!
We made an appointment with the allergist’s nurse practitioner and told her our suspicions. To which she replied, “Well, I doubt it. People usually aren’t allergic to honey.” But they scratch tested her with it and she reacted strongly to two different types of honey. It’s one of those mixed feelings – happy that you figured it out but sad that another allergy manifested. And then when we took honey out of her diet – she was a different child! We were literally having screaming tantrums with slamming doors and her screaming, “I don’t LIKE you!!” – which may be the norm in some kiddos but not
Then at a birthday party she broke out in hives and complained of her mouth hurting after eating a cracker. It had no eggs, no honey, and was not produced in a facility that manufactures products with eggs. We were stumped, but life was busy and I didn’t know what to do about it. I also noticed at this time her nose was constantly dripping. Spring allergies, perhaps? Then when both girls got a virus that developed into croup, they both were put on steroids. I saw my little girl that I hadn’t seen in over a year! Another light bulb – steroids decrease inflammation and decrease your body’s reaction to allergens! I started reading stuff on the internet, digging around. One theory for allergic people is they actually crave the foods they are allergic to. So I started thinking, what does she crave? Oatmeal, Cheerios, granola bars (we found one brand without honey), toast…oats, maybe? So on a whim, we cut out oats. Her behavior changes were amazing!
Two weeks ago I called the allergist – we were due for her annual checkup, and her annual blood draw to check her egg allergy levels. I asked if we could do the full food panel again, which they said yes to. She then had her pediatrician’s appointment – and her weight was in the 15th percentile – the highest yet! I was shocked because she is rail-thin (she IS the world’s pickiest eater, after all!) – her waist fits 18 month clothes but she is a 3T in length. The pediatrician checked but the results weren’t in. We discussed allergies but he seemed to think it was just her being a moody kid and a picky eater.
Then, THE DAY hit. I called to see if the results were in. The nurse read off the list of what tested positive: wheat, oats, rye, barley, peanuts, soy, peas, & tomatoes. What?? Really?? I was in shock. She said some things about how the doctor saw the results and wanted to make sure we had an appointment – which we did – and then said to avoid those foods until then. That was it.
I was reeling. Everything that we could manage to get in her had these things in it. And peanuts? That’s a scary one. Soy? That’s in everything these days! Wheat? What? Everything she eats has these things in it!
It was one of those pivotal moments in my life – you hear people talk about those moments but you don’t understand what they mean until you go through it yourself. I was devastated. I didn’t know if I should scream or cry or pull out my hair or what.
So, I did what most people do when they are stressed…I called my Mom. :-) We commiserated over the news. I tried calling my husband, but he was unreachable at work.
The rest of the day was a blur of emotions and stress. I tried to talk to
I was grateful to have had a “God moment” the weekend before. Since I had decided to cut out oats, I was browsing the organic area in our local Fred Meyer. I just happened to be in the same aisle at the same time as one of my friends from church who has a son with multiple allergies. She started pulling products off the shelf and telling me which ones taste good and which ones her kids liked. If I hadn’t just happened to run into her, we would have had nothing to feed
I was thinking of all the paths in my life that led up to that moment. Is this why I became a nurse? Is this why I am friends with another mom who’s kid has allergies? Is this why I’m a stay-at-home mom? Did all the choices in my life lead up to point of taking care of this child, that God led me this way so I raise a child with special dietary needs?
And then there is a grieving process. Your child is not normal. Food is entirely social, especially for kids. She had a birthday party in 2 days, what was I going to do? And seriously – she is the worst eater out of all the kids I have ever met. What was she going to eat? What does this mean for the rest of her life? What does this mean for our family?
I posted on Facebook – I truly have the best friends. I got an outpouring of support. I got the most responses on my status than ever before! But there was still this feeling of being all alone in this. I am her Mom--the problem of feeding her falls solely on my shoulders. While I have great support from friends and family, the actual process of grocery shopping & cooking falls on me. I feel overwhelmed, and stressed, and I have a million questions. My allergist’s appointment isn’t for 3 weeks. What do I do?
I can’t sleep, I’m up at all odd hours of the night researching online. I find great websites, and I start to worry about celiac disease. I find recipes, and I feel like I have done all that I can on the first day. I fall asleep after midnight after searching all sorts of sites that get me stressed and relieved and full of even more questions than I thought possible.
One day at a time. I can do this.