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!

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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Doctors and More Doctors!

We've been in full swing with doctor's appointments again. We'd switched allergists, thinking that it would be easier to have all of the children's doctors at Children's Hospital, but we decided to go back to our old allergist. Nate and E went this week and GracieGirl and J are going tomorrow. The allergist said that Nate's asthma is under control but his allergies are bothering him. E's report wasn't as good, and the poor little guy came home with a stack of prescriptions!

Jay saw the dermatologist again, too, and she thinks that some of his problems with nighttime scratching may be behavioral. I'm not sure why she would think that, since the majority of his body is covered with eczema, and I'd kind of think that that's why he's scratching! She wants us to make an appointment with a behavioral specialist through Jay's developmental pediatrician at the autism center. We'll try anything that might help; I just to get to it on my To Do list yet!

Jay had a sleep study a few nights ago. He had some trouble dealing with all of the wires, but he loved the room...the bed with a sleep number mattress, the big, comfy quilt, the large flat screen TV, and lots of snacks. Once he was settled in, he lay back and said, "Yep, I could definitely get used to this!" He paused for a second and added, "It's not because of the TV or even the snacks; it's because there's a bed in here for you, too!" He's so sweet...

He brought his sleeping bag with him because he practically lives in it at home, so that helped comfort him a bit.

Jay in his favorite sleeping bag. I don't know how he does it,
but he walks in it and goes up and down stairs in it!

So, I was selfishly thinking that I might get a decent night's sleep, being away from the nighttime drama here at home. I went to bed at around 11:00pm, got comfy, closed my eyes...and Jay's monitor started going off! The tech came in and turned it off, and once again, I settled in. Three minutes later, it went off again! This time, both techs came in, turned on the lights, started replacing parts on the machine, and finally left. I don't know what the problem was, but this went on most of the night! I was feeling far from refreshed when they woke us up at 6:00am! I'd begged asked for late checkout, just as I'd done during my sleep study, and once again, I was turned down! ;)

I was feeling sad this weekend because, for the first time ever, we missed Sesame Place with the Variety Club. E is really struggling with his asthma, so he couldn't go. He's had a few rough days (and nights!) between the asthma, allergies, hives all over his arm one night, and the little, itchy bumps that are covering his entire back! The allergist ordered blood work for him to check on some of his allergies. Nick thought that these symptoms were perhaps linked to the Cyclic Neutropenia, which makes his white count low every three weeks. If this is the low period, maybe his little body just can't handle everything. I don't know, but I sure would like to help him feel better!

Now we're just continuing to pray that E stays out of the hospital. The treatments aren't helping much, and tonight his breathing was really labored. I still don't feel confident about knowing exactly when he needs to go to the hospital, but Nick is confident that he knows. Prayers greatly appreciated for our little guy!

E decided that the only way to feed the birds is to dump the seed
all over the place, roll in it, pull up leaves and sticks,
and then sit and call the birds to come eat!


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Living with Food Allergies

As Food Allergy Awareness Week wraps up, I thought I'd share, as others have done, a bit about how food allergies affect our life. Most days, we just go with the flow, but there are times when I stop and think about how much easier our lives would be if there was a cure for food allergies.

I was allergic to hundreds of things when I was growing up, but anaphylaxis wasn't part of the picture, so I had no idea what living with life-threatening food allergies was like.

In our house, Jay is allergic to wheat and gluten (rye, barley, and most oats) and dairy. The nutritionist also has him off of soy, refined sugars, and most carbs. GracieGirl is allergic to wheat and gluten. E is allergic to peanuts and tree nuts (anaphylactic), eggs, and dairy. Nate was tested as a toddler and no foods showed up, but I suspect a dairy allergy or intolerance.

Jay has severe eczema, E has eczema and asthma, and Nate has asthma.

We make almost all of our food from scratch. There are some prepared foods we can buy but they're expensive and often don't taste as good as homemade.

Baking is an adventure. We have a cabinet and freezer full of different flours. We can't use just one flour when we bake; we have to combine several flours, such as rice, sorghum, tapioca, and potato starch. We use xanthan gum to keep baked goods from becoming a crumbly mess, and powdered egg replacer as a binder. We use olive or coconut oil instead of butter and rice milk instead of cows' milk.

We never have peanuts or tree nuts in the house. We do have eggs, and it's a bit stressful keeping E away from them. E doesn't have anaphylaxis to eggs, but he did have an immediate reaction after eating them, so we don't know what a second reaction might be like. It's sometimes challenging, especially when we're rushing, to remember who eats what. GracieGirl can't have the Ezekiel Bread; she has to have the brown rice rolls. E can't have the rolls because they have egg whites in them. Jay doesn't like meats or most vegetables and that's all he's supposed to be eating right now. Nate can't stand rice milk or gluten-free bread.

On the rare occasions that we find a meal, or even a single food, that everyone likes and can eat, it's cause for celebration!

We always plan ahead. When we leave the house, we pack food and drinks for everyone. We don't have the option of stopping to pick something up if we run late and get hungry.

We read labels, read labels, and just when we think we've read enough, we read more labels! Product ingredients change, so, just because we bought something that was safe one time doesn't mean it will be safe the next time we go to buy it. We also avoid products that were processed in facilities or on equipment that processes peanuts or tree nuts. Studies have shown that a full 10% of foods manufactured on shared equipment will actually have nuts in them.

We avoid some homeschool events, especially those centered around a meal or where a lot of snacks will be served. We opt for more of the outdoor events and field trips.

Family get-togethers are difficult. Jay has a tough time watching his cousin eat pizza and chicken nuggets and desserts that he loves but can't have. When possible, we bring our own substitutions so that he doesn't feel as left out, but it's not always possible and it usually doesn't look as good to him as the stuff his cousin is eating!

Baseball games and flying are two other things that we avoid because of nut allergies. We always carry wipes, and when we go shopping, we wipe down the cart before putting E in it, in case the child before him was eating nuts. E is at that age when he puts everything in his mouth and I worry that he'll pick up a piece of discarded candy at the park that has nuts in it. He also believes that all cups and water bottles must be his, and I worry that he'll grab one that may belong to someone who was eating nuts before drinking from it.

I'm also concerned about people not taking the children's allergies seriously, and/or thinking that we're overreacting or being overprotective. With Jay and GracieGirl, they'll get sick if they eat foods they're allergic to, but with E, he could die from eating nuts or peanuts. He doesn't have to eat a Reece's Cup; he could react from getting a kiss from someone who had eaten peanuts or from eating food that had been served with a spoon that had just a trace of nuts on it.

E can never be without his EpiPen. Thankfully, we have never had to use it. It scares me to think of using it on him, but I'm confident that I would do what I had to do if he was having an anaphylactic reaction. We have EpiPens in a bag by the door, along with a bottle of Benadryl. There are EpiPens and Benadryl in the kitchen and upstairs in our bathroom. We always have them on hand, in their designated spots, and we always make sure they're in date.

E is rarely away from us, and I wonder about sending him to friends' houses when he gets older. It's hard enough for us to keep on top of reading labels all the time; can we expect others to do it vigilantly? What if his friend gives him something, without the friend's mother knowing?

Jay, who is almost nine, knows what he can and cannot eat, and he's good at telling people that he can't eat something. GracieGirl is good, too; she knows that she can't eat bread or pasta or cookies or pizza at people's houses, but I sure can't expect her to know about all of the hidden sources of wheat. All of the kids are very protective of E and will quickly tell family or friends not to feed him certain things or eat nuts near him.

I don't worry about E all the time, but I do have concerns when he suddenly develops hives and I have no idea what caused them. When his eczema or his asthma flares, I wonder if a food allergy is involved. Recently, his eyes have been swelling and he screams and rubs them frantically. He's also been sneezing a lot, after which he also screams and holds his ears. I'm also concerned about other allergies to foods he hasn't been tested for. We haven't given him fish or sesame seeds, for instance, because they're highly allergenic foods, and we don't know if he'll react.

Maybe this is sounding whiny, but I'm not complaining about it. We do what we have to do. Yes, it's a pain, and yes, if I had a choice, I'd certainly prefer that the kids not have food allergies.

On my Fantasy Food Allergy Wish List, if I couldn't get a cure for food allergies, my next requests would be a freezer full of allergy-safe, delicious convenience foods that all of the kids loved, and a healthy, allergy-free fast food restaurant in every town.

I can dream, can't I?? :)

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Then and Now

Then:

1. Turn on oven
2. Open freezer
3. Pull out frozen pizza
4. Bake in oven
5. Slice and eat
6. Throw box in trash
7. Place dish in dishwasher
8. Sit down and relax

Now:

1. Pull out 17 different gluten-free flours (Okay, slight exaggeration...maybe not 17, but it sure looked like it!)
2. Mix them all together; add to other crust ingredients
3. Beat with mixer
4. Oil pizza stones
5. Attempt to make two large globs of very sticky dough resemble pizza crusts
6. Pre-bake crusts
7. Chop lots of garlic and sauté it in olive oil
8. Open numerous cans of different tomato products
9. Add to garlic, along with lots of spices
10. Simmer until it tastes like pizza sauce
11. Set up the food processor
12. Grate as much cheese as I can find in the refrigerator (If I’m going to clean the food processor afterwards, I'm going to make it worth my while!)
13. Spread the pizza sauce on the pizza; top with cheese
14. Listen to Nate complain that we never have pepperoni pizza anymore
15. Pop it in the oven and bake for 20 minutes
16. Answer the call from Nick who says that he’s working late…again
17. Ward off the starving kids as I take it out of the oven
18. Cut it into slices; place on plates
19. Stick the plates in the refrigerator so that the kids don’t lose the skin on the roofs of their mouths as they devour the scorching hot pizza
20. Look at the completely trashed kitchen and want to cry
21. Remember that I didn’t make any dinner for E, who's allergic to cheese
22. Feed him a pizza crust, praying that he doesn’t react to the cheese
23. Listen to the kids say that they’re still hungry because I never make enough pizza
24. Start cleaning the kitchen
25. Survey the damage to the house caused by the toddlers while I was making dinner
26. Call Nick to recommend that he put on a helmet before entering the house tonight!
27. Remember that I need to feed E something besides pizza crust for dinner
28. Make something for E to eat
29. Give in to the starving kids and serve them the rest of the pizza
30. Start thinking about what I’m going to make Nick for dinner
31. Dream about the time that I can collapse into bed...knowing that it won't be anytime in the near future!

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