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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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. :)

 

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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!

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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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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One Day

The Dream:

• Four whole weeks with all four kids in different camps
  
• Being alone with Nick
  
• Getting caught up with paperwork, housework, decluttering, homeschool planning, and ripping out carpeting to make it safer for our dust allergy kiddos
  
• Maybe even going out and doing something fun with Nick

The Reality:

• One day alone with Nick
  

Last Monday was the big day. GracieGirl and E went to camp, and Nate and J went to my in-laws' house at the beach. Nick and I went for a quick swim together after being ordered by our therapist to do something fun! The rest of the day was spent on paperwork.


And, as of last Thursday, Nate is the only one still going to camp.


That was the day that Nick went to pick up GracieGirl and E at the YMCA camp. All of the kids were down at the little public park at the bottom of the hill. As Nick parked, he watched GracieGirl and E run through the parking lot (which is a shared parking lot for other businesses and is also a narrow back street), alone, up to the office. The building was unlocked, and when he got there, he found both children in there, alone. He signed out both kids and started to leave with them, without any staff members present.

He was not happy,
and after gathering up their backpacks,
he spotted E's EpiPen bag in the office!!!

After our initial fiasco with E's EpiPen, the camp director held a meeting and assigned someone to carry E's EpiPen bag so that it was with him at all times, no exceptions. They put up signs and made it a peanut-free facility. They sent home notices to the parents. There are two other kids there with peanut allergies and we were happy to see those changes implemented.

After all of that, I was shocked to hear that it had happened again. Nick said that we simply couldn't send them back, so we withdrew both kids. Once again, I contacted the camp director, who was appalled, apologetic, and furious with her staff.

So...we had our one day this summer. The house is still a dust-filled, disorganized mess, the paperwork still out of control, and Nick and I often resort to emailing each other because there's no time to talk. E is back to life at home without the structure of camp, which is always an adventure. But, he's alive and healthy, and we're thankful for that. I was so skeptical about sending him to camp because it's really hard to trust strangers with your child's life. It was the first time the kids ever went to camp, and it may be the last. We'll see.

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1-2-3 Gluten-Free

I tried a gluten-free cake mix from 1-2-3 Gluten-Free for E's birthday. The mix is free of gluten, wheat, dairy, casein, peanuts, tree nuts, corn, sugar, eggs, and soy. I had both chocolate and yellow, and decided to try the chocolate first.

The mix calls for eggs, but also has an egg-free version using flaxseed. Since E can eat eggs in baked goods that have been baked for at least 30 minutes, I used eggs and made a 9 x 13" cake. It rose beautifully and although we didn't get a single picture of it, it was a great looking cake!

I'd never used a cake mix to which you have to add your own sugar, but I ended up liking it because they have an option for making it with agave syrup and maple syrup. It was very sweet and I don't think that anyone would guess that there was no refined sugar in it.

Everyone who tried the cake really liked it, and these are people who aren't necessarily used to GFCF, refined-sugar-free cakes!

Personally, I like the chocolate cake I make from scratch better, because I think it's just a bit moister. This was very good for a mix, though, and I'll definitely make it again. Next time, I'll try making 9" round cakes because I think I'd like it better with the extra icing in-between the layers.

Ingredients: Rice flour, potato starch, tapioca starch, aluminum-free corn-free baking powder, natural flavor, xanthan gum, salt. Manufactured in a dedicated allergen-free facility (NO gluten, wheat dairy, casein, peanuts, tree nuts, eggs, and soy!).

E's Meds and Allergies

E had his first follow-up visit with the psychiatrist recently. She seemed as surprised as we are that the meds are working so well for him. I know that it's not common for the very first med we've tried to have such an effect. I also know that chances are that it won't always work so well. So, we appreciate the positive changes in him while they last.

Overall, E has calmed down a lot. For the first time ever, he plays alone, using his imagination. For the first time ever, he'll sit down and let us read stories to him. He plays house with his sister, and he sits through most of a video. He is more compliant, and generally nicer.

The meds aren't a cure-all, and I'm glad that I wasn't expecting that they would be. He's had very few rages, but he still routinely hits, destroys things, antagonizes people, and refuses to obey. He also seems to be even more obsessive than he used to be. Yesterday and today's obsession is that his ears are scratchy and he wants them massaged. He becomes more and more frantic as he talks about it, until he's hysterical. This started yesterday, continued through much of the night, and resumed as soon as he woke up this morning. It's exhausting, for all of us!

We're experimenting with different dosages, seeing if there's any change in his nighttime craziness. We also have a consult for another sleep study in a few weeks.

All of E's bloodwork came back normal, with the exception of his low white blood cell count, which is because of his Neutropenia.

E also had more allergy testing done. The good news is that his egg allergy has improved, so we're going to schedule an egg challenge to see if he can tolerate scrambled eggs. It's funny because they called yesterday with the results, right after E had been talking about his egg allergy. He told me that it was okay if he was still allergic to regular eggs, but he really, really hoped that he wouldn't be allergic to green eggs! We've been reading Dr. Suess recently, and he and GracieGirl keep begging for green eggs and ham!

The not so good news is that his peanut allergy actually worsened, and the nurse described his test results to cashews as "unbelievable."

So, we continue on our quest to keep him safe from those allergens. There haven't been any more incidents at camp, except when one of the parents sent a peanut butter sandwich to a camp field trip last week, even though the camp is now peanut-free.

There was also an incident at church on Sunday when he was given a snack. We'd had incidents before when they had a bowl of candy (with nuts) out in the classroom every Wednesday night. Every Wednesday, Nick would take the bowl and tell them that they couldn't have them out because there were children with nut allergies. Every Wednesday, they would tell Nick that the candy was for the adults, not the children. Every Wednesday, Nick would tell them that it didn't matter who they were for; any of the kids could reach them and the ones with allergies could potentially die if they ate them. Sigh. We'd never had a problem on Sundays, though. This past Sunday was simply a lack of communication. The thing with allergies is that all it takes is one little lack of communication.

For now, we continue to make people aware, while trying to keep E safe, resisting the urge to never let him out of the house!

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First Week of Camp

My kids have never been to day camp before, but after seeing how much better E functioned in preschool, I realized that camp would be a good thing for him. So, I signed up all four kids!

Yes, I had dreams of being alone all day long, and having some time to actually get things accomplished. No, I didn't believe that it would ever really happen.

Camp started on Tuesday. J fell apart Monday night and I knew he wasn't going to make it. Day One went well for the other kids; Day Two, not so much.

Nick went to pick them up, and discovered that E's EpiPen bag was gone. Turns out they'd left it at the pool, a couple of miles away!

It's a good thing that it was Nick and not me, because I probably would have had a coronary right then and there. Especially since he'd discovered the day before that they'd locked up E's EpiPen with the other meds, so he didn't have it when they went off to the playground down the street. Nick explained that, if E were to have a reaction at the playground, it would be too late by the time someone ran back to the building to get the EpiPen!

Then E told us that they'd given him a snack. He told them he has allergies and brings his own snack. They told him to eat it anyway. And, for once in his life, my little non-compliant child did as he was told.

One more way to send this momma over the edge...


I spent a few minutes pulling myself together and then I called the director. No answer. So, I sent her a lengthy email. I was polite but didn't pull any punches.

My phone rang five minutes later.

The director took it very seriously, saying that she felt sick to her stomach after reading my email.

Yeah, I can relate.

I told her that we'd done everything we were supposed to do. Everything was in place, but somewhere along the line, there was a communications breakdown. I was angry because we're not talking about a Tylenol here; we're talking about something that can make the difference between life and death in the event of an allergic reaction! And, since it's supposed to be a peanut-free facility, but in fact is not, the potential for E to have had a reaction is very real!

In spite of my desire to take him home and never let him leave the house again, he returned to camp yesterday. He now has an adult buddy who is responsible for carrying his EpiPen and supervising lunch and snacks. (His PCAs also go with him, but those things happened in the short period of time when they weren't there with him!) The director held a meeting with the staff, and also sent out notices to the parents, banning peanuts from the facility, so I feel like this won't happen again.

I'm sure praying it doesn't!

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Allergies and Asthma and Eczema...oh My!

I took GracieGirl and E to the allergist today. We borrowed a van from a friend (thank you!!) so that Nick could pick Jay up from his autism class, while I took the kids. I was a little bit nervous about E getting out of control, so I pulled Nate away from his friends to come along and help. He was not thrilled.

I love our allergist, and he always keeps the kids entertained and in line. He pretended to hypnotize E with his stethoscope, and I told him that if he pulled that off, that stethoscope was coming home with me! He said that of course E couldn't sleep; he has too much energy to sleep!

He was happy with GracieGirl, except for the eczema that covers the backs of both of her legs. He wasn't happy with E at all, saying that we need to get his asthma under better control. He started him on a new med and wants to see him in three months. He also wants to do another blood test and then possibly another egg challenge, depending on the results of the blood test.

I came home with a whoppin' 14 scripts! Fourteen meds for two little kids! Unbelievable.

E was good, for the most part. He did tell the doctor that he didn't look like a doctor; he looked like he married a man. Huh?? I finally figured out that he meant that the doctor looked like a man who was getting married because he was wearing a tie! Apparently, he didn't look like a doctor because he doesn't wear a lab coat!

E did run out of the office as I was scheduling his next appointment, and then tore out of the building as we left. Couldn't have done it without Nate...

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Faces of Food Allergies: Food Allergy Awareness

From our favorite food allergy group, Kids with Food Allergies:

Faces of Food Allergies: Food Allergy Awareness

Look for E in there!

Update: I can't believe how many pictures they've added! I scrolled through, looking for E's picture, and the thing that stands out is the wide bottom of a bright yellow slide that he's sitting on!

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Allergy Progress!

E passed his egg challenge!

This means that he can now eat baked goods with eggs in them, as long as they have been baked for at least a half-hour at a temperature of at least 325 degrees.

I was thinking (mistakenly) that he would now be allowed to have pancakes and waffles, but that's not the case. But at least he can have birthday cakes and bar cookies...as long as there aren't any nuts in them!

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Full

They say that humans use only 10% or less of our brains' capacity, but apparently I am the exception. I'm convinced that I have used 100%. My brain is full. I simply cannot remember or deal with one more thing!

Last night, Nick went to the store for an Angel Food cake mix. I had to make a cake for E to take to the allergist's office today for an Egg Challenge. The store didn't sell a mix! I didn't want to make it from scratch because we bake gluten-free and I don't even keep wheat flour or white sugar in the house. I didn't have a choice, so I asked Nick to get a small box of cake flour and a small box of white sugar.

As is typical, I didn't have the energy to bake last night, so I procrastinated. I ended up beating a dozen egg whites at 1:00AM and trying to sift the flour and sugar five times! I don't even own a sifter so Nick pulled one out of the kids' play kitchen stuff. :)

So...I got the cake in the oven and let it bake for an hour.

Since I had a bunch of egg yolks staring at me, I decided to make a banana cream pie. I rarely bake anymore and J had commented awhile ago that he'd never really had pie except pumpkin pie on Thanksgiving and he doesn't even like pumpkin pie! My mom used to bake all the time and I baked when I was growing up, and I felt sad that my kids hadn't even tried some of these homemade baked goods!

Nick had gotten a premade pie crust, so I stirred away and made the filling. I was hurting and was getting cranky, so I asked him to come back downstairs and help. We baked and worked on the computer together...and I think it was going on 4:00 AM when we got to bed.

This morning, shortly before E's appointment, Nick looked at me and said, "E had to be off of antihistamines before this challenge, right?"

My jaw dropped. I'd completely forgotten about that!

I begged him to call the doctor for me, but he refused. So I called the office and left a ranting message about how I'd stayed up half the night making the cake but that my brain just doesn't work anymore and I'd forgotten to stop E's allergy meds! Thankfully, the nurse was so nice and said that I was actually the second person that had called today saying that they'd forgotten to stop the meds.

I used to be efficient and organized. Those days are long gone. Thankfully, we'll be finished with school tomorrow which takes away so much pressure. Maybe my brain start functioning again over the summer. I have to hope so...

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Weekend Sleep and Test Results

Nick and I have had a much-needed relaxing weekend. I knew I needed a break when I went to call my in-laws and couldn't remember their last name! Thankfully, my son reminded me that I share a last name with them, so I was able to call them. :) They picked up the children on Friday and took them to their house for a long weekend. I'd forgotten what it was like to sleep all night long, without being woken up by screams in the night or being kicked in the side or hit in the face while sleeping. Amazing how much better I feel after a good night's sleep...

We did some crazy things like order Vietnamese takeout, which meant that we ate PEANUTS in the house!!! Honestly, I felt like we were doing something illegal! We also worked on the business, visited my mom in the hospital, and cleaned up/organized the house. Nothing exciting, but I'm happy!

We did get some test results last week. The allergist called and said that E's blood tests showed the same thing as the skin tests: he's extremely allergic to peanuts, all tree nuts (sadly, even almonds), and sesame seeds. Eggs were also high, but he wants to do a cooked egg challenge in his office. He said that I have to make angel food cake, making sure to bring in enough for the entire staff. (He's so funny!) He assured me that he would have any needed meds right there, and he'd start by touching the cake to E's lips and then waiting to see if there's a reaction. Then he'll touch it to his tongue and wait again. Next, E will actually eat a little bit of it. Not only will this determine if E can handle cooked eggs, it may also help him outgrow his egg allergy sooner. So, we'll see what happens. My gut tells me that he'll be able to handle cooked eggs, but that may just be wishful thinking, especially since our grocery store just stopped carrying Egg Replacer!

GracieGirl's Celiac test came back a few days later. Negative. I was really surprised. So was her allergist. She's going back to see him this week, so we'll find out what to do next. I, of course, started researching online and came across this info on NCGS (Non-Celiac Gluten Sensitivity). The logical solution seems to be to take her off of all gluten again but I want to get as much medical information as I can before doing so.

I'm thankful that we continue to get answers, even when they're not always the answers we'd like to hear! :)

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Catching Up

Our business, Truly Pure & Natural is finally up and running. We've had a good time working on it, even though Nick has done the vast majority of the work. Some people have asked if it's a Multi-Level Marketing company, such as Shaklee or Arbonne, and it definitely is not! It's simply an eclectic collection of natural products that we use and that work for us. We're slowly adding new products that we want to share with others.

GracieGirl and E both had to have bloodwork at the beginning of the week. I dreaded it because last time, E's screams could be heard three counties away! So, I did the wise thing this time...and stayed in the car while Nick took him in. :) Amazingly, he didn't struggle or cry. Nick brought him out to the car and took GracieGirl in. Same result, not even a whimper. I want to get that tech's name and ask for her every time!

E was having blood tests to confirm the skin tests for his allergies. I was hoping and praying that he wouldn't be allergic to almonds because I'd love to be able to use almond flour as an alternative to wheat and other grains. No such luck. The doctor will call us on Monday but the nurse said that he is highly allergic to all tree nuts and eggs. Unfortunately, in E's head, the doctor said he won't die if he eats nuts! So, I've been working on convincing him that the doctor most definitely did not say that. He's been really good about asking before eating anything, and I want him to continue doing that!

GracieGirl's Celiac test didn't come back yet. I'm hoping to hear something on Monday. She's been complaining of a hurt tummy for the past few days, so I'm just praying that the test shows whether or not it's Celiac.

Jay got his sleep study results and he does not have sleep apnea and his adenoids do not need to come out. So...back to the drawing board. I'm still waiting to hear back from the sleep specialist, and he sees his autism doctor in a few days, so we continue trying to find some answers!

I don't even know what to say about E. His behavior continues to worsen. I asked Nick if it was me, thinking that maybe I'm just getting too old and burnt out for all of this. He said that it definitely was not me! (I knew that, but I just had to confirm it!) The good news is that I'm getting support, which means so much. People have suggested things like bi-polar, RAD, and ODD. Hard to hear at first, but now I just want answers. I filled out a 15-page request for evaluation and sent that off. It's just hard because he has such a wonderful side, so I keep thinking that I must have been exaggerating his other behavior, and it really wasn't that bad. But then he gets violent, often without warning, and I'm reminded that things really are bad. I'm just praying that we can find the right help for him because there's a side of him that really is so sweet.

Besides being busy, the other reason that I don't generally blog during the day is that I pay for it afterwards. This time, GracieGirl and E have gotten into the crafts box. Judging by the creative mess they've made so far, I really should be focused on them, rather than on this blog! Off to survey the rest of the damage... ;)

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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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A Visit to See the Allergist

Nick and I took Jay and E in to Children's Hospital today to see a new allergist. We were gone for seven hours, and spent 3 1/2 hours in the office! Thankfully, the boys were well behaved, even as it approached the magic meltdown hour of 5:00pm.

Jay was tested for 13 different things. I really wish they'd given me a list of what those 13 things were. He came up quite allergic to shellfish, cats, and trees.

I think that E was tested for more than 20 things. His positives were peanuts, tree nuts (especially cashews), eggs, sesame, shellfish, fish, cats, dogs, horses, trees, and grasses. We already knew about some of those things, but he'd tested negative to horses in the past. We'd been avoiding sesame and all fish just because they're highly allergenic, and now I'm glad that we did!

We'd originally been told that kids generally aren't tested for environmental allergies until they're at least three years old, but they told us today that they've started seeing environmental allergies in younger children, so they went ahead and tested E after we told the doctor about the time he was sitting out in the grass and came in with hives all over the back of his legs!

Both boys were very brave, even though I was cringing as I saw the welts on little E's arms. A couple of them (peanuts and cashews) were so large that they merged with the welts next to them!

We walked away with 13 prescriptions, and now have two children carrying EpiPens!

The doctor wants to see E again in September since his asthma has gotten bad enough in past Septembers that he had to be hospitalized.

She wants Jay to go to a clinic at the hospital that they hold once a month where both allergist and dermatologists are present, and work together to come up with solutions for kids with allergies and eczema. I'm excited about that and am praying that they can help my itchy little guy!

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