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!

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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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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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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