Wednesday, August 25, 2010

Tuesday, August 24, 2010

Feeding the Nut/Egg/Sesame Allergic Child

One of the hardest obstacles I have encountered since becoming a parent of a food allergy kid is what to feed him. My oldest lived off of peanut butter before the PB debacle - many days it was the only true protein that I got into him. PB&J, PB & Banana, PB & baby carrots, PB & apples, and so on. Just before learning of Luke's nut allergy I was starting to think about letting him try peanut butter, as I was desperate for an easy meal solution. Since Cody did so well with it, I had high hopes that I could turn to peanut butter for both boys.

Now that we know about his allergy, peanut butter is out completely. We don't keep anything that mentions the word "nut" on the label. So not only is it lacking as a meal idea for Luke, it's also not a meal idea for Cody. There are peanut butter alternatives out there - soy nut butter, sunflower seed butter, almond and cashew butters, etc. The nut butters are a definite no, I have no desire to discover if Luke is anaphylactic to them as well. Soy butter is out, as I am trying to limit our soy intake. We do use Sunflower Seed Butter. I don't particularly care for it -the consistency is similar to natural peanut butter, but it leaves an aftertaste that I'm not crazy about. At first Cody refused to eat it, but now he will occasionally ask for it. I don't give it to Luke. First, as he gets older, I don't want to confuse him. I don't want him to see peanut butter and think it's something that is safe for him. Second, emotionally, I have a hard time giving him something that resembles a food that could have killed him. When I make Cody's sunflower sandwich, seeing the sunbutter on the knife gives me the heebie jeebies, it's a bad reminder.

Of course Luke's other allergy, egg, is just as difficult. Egg is in a lot, from salad dressings to frozen french toast, pastas, etc. Sesame seed is in more and more foods, and the worst part is it's not a Top 8 Allergen, so companies don't even have to list it as a food ingredient. Anything that has "spices" in their ingredients could include sesame. It's scary, and frustrating. Especially since we don't know if it's truly an allergen for him.

The hardest part is not being able to just give him whatever is handy. When we're out, I have to be careful about where we stop to eat if we need to grab something fast. McDonalds is out of the picture until October when they're supposed to stop serving the Reese's McFlurries. Chik-Fil-A, a former favorite, is out because they use peanut oil. Panera Bread serves peanut butter, and doesn't give me a warm feeling about eliminating cross contamination.

This is a sample of what I feed him, while avoiding all nuts, eggs, sesame. We're also currently avoiding barley, rice, oats and banana as a trial. It's a short list, but it works for us for now. Most items are portable, which is nice for going to playdates or to the mall.

Fresh Fruit (strawberries, pears, nectarines and watermelon are his favorites)
Steamed Veggies (broccoli and carrots are favorites)
Nature's Own 100% Whole Wheat Bread
Organic String Cheese
Wheat Crackers
Gold Fish crackers
Organic Butter
YoBaby Yogurt
Trader Joe's Mini Cheese Pizzas
Chex Corn Cereal
Sliced American Cheese
Kirkland Mickey Mouse Chicken Nuggets
Wegman's Pasta (marked as vegan - no egg and not processed with egg! This is literally the only reason I shop there)
Classico Pasta Sauce
Whipped Cream Cheese
Cheese Quesadillas

I try to do organic as much as I can, within reason. My budget doesn't allow everything to be organic. I focus on the things that both boys eat the most, dairy and fruit. Trader Joe's has an awesome selection of organic products at very good prices - most of the time what I pay for organic there is comparable to what I would pay for conventional at the grocery store.

Luke is not a sweets kind of kid, at least not yet. I was lucky enough to win the new The Divvies Bakery Cookbook: No Nuts. No Eggs. No Dairy. Just Delicious! cookbook recently, and am looking forward to trying some of the treats in there. Maybe having a yummy eggless cookie or cupcake will convert him =)

Wednesday, August 18, 2010

Another Trip to the Allergist

Today was the follow up visit to the allergist for the endoscopy. When I last posted about this, I was trying to decide which allergist to see. I ended up making an appointment in the same office as the allergist we had been previously seeing, but with a different doctor. The doctor that we saw today was mentored by Dr. Robert Wood. Dr. Wood is considered by many to be the food allergy "guru". His office is in Johns Hopkins University Hospital, and the wait to get in to see him is pretty close to a year out. Many people in our area have a local allergist, and then travel to see Dr. Wood yearly. I'm not at that point, but I find it interesting.

First, I have decided that I really like the new allergist. She started out by having me go through Luke's previous reactions. She sat and listened. Even my two boys acting like little monkeys didn't seem to bother her. She asked questions and seemed to be genuinely interested. I came away with quite a few interesting things...

1. Because Luke's RAST results for peanuts was relatively low, he has a better chance of outgrowing the allergy in the next couple of years(!!!).

2. Luke's reaction after eating at Burger King awhile back was indeed anaphylactic. I knew it, based on what I read in Food Allergies For Dummies. She used the reasoning that two parts of the body were affected (vomiting and sneezing/congestion). We should have used an epi pen that night.

3. I was given very clear instructions on when to use the Epi vs. Benadryl. Basically any reaction with 2 areas affected, a reaction involving breathing troubles, or a reaction where hives cover a large portion of the body requires using the Epi Pen. A few hives, or just one symptom (vomiting alone for instance) we can either give Benadryl or wait and see what happens.

4. Luke having pneumonia 3 times in 9 months could be a result of food allergies in the form that he could be aspirating when he reacts to foods. Or it could be a result of his immune system not developing properly. Blood tests will be done for the immune system.

5. We're going to be avoiding bananas (easy because Luke won't eat them), rice, barley and oats for 4 weeks to see if it fixes his delayed allergy symptoms. I'm not sure it will help, as he doesn't really eat any of those things. He used to be a Cheerios fanatic, but hasn't had them in quite some time. I don't think he has had rice since 4 or 5 months old (rice cereal), and the only barley he has is in foods, such as barley malt in his favorite pretzels. But we'll see.

6. She wants him to come in for somewhat regular growth checks, as he is less than 5 percentile for height and weight. He has been since birth though, so it's not something I'm particularly concerned about.

All in all, I learned more from her in the hour (yes, hour...when was the last time a doctor spent an hour talking to you? It's been awhile for me!) that we talked than in the previous 4 appointments with the other allergist.

If you're in the Northern Virginia area and would like info about the allergist that we saw today, please feel free to send me a message. I would be more than happy to pass her contact information on.


Tuesday, August 17, 2010

Food Allergy Fatality on Cruise Ship

21 Year Old Cruise Passenger Dies Hours into Trip

A 21 year old man, someone's son, brother and grandchild, passed away just hours into a cruise. Something that he no doubtably had been looking forward to, something his family was excited to be on. According to a response, someone that appears to know the person, the man had a peanut allergy and had eaten chocolate chip cookies before he became ill.

This is why Luke's food allergies terrify me. Danger lurks everywhere when you have a severe food allergy. Something that you would consider to be safe, such as a peanut-free cookie, has the potential of being fatal. Eating anything that wasn't prepared by yourself is scary - no matter how much it is promised to be safe, you can't be 100% sure. People that don't deal with it on a daily basis don't understand. Someone may use the same bowl to make sugar cookies after making peanut butter ones. They might even rinse the bowl out. But unless that bowl is properly cleaned, it still contains the dangerous protein.

This is why I don't take chances. People might think I'm crazy. People might think I go overboard and am overly protective. That's ok, I can handle that. What I can't handle is the thought of Luke suffering because I wasn't protective enough.

The young man on the cruise passed away from a heart attack due to the food allergy reaction. Severe reactions are real. Severe reactions won't just leave someone with itchy hives or a tummy ache. Severe reactions can cause anyone, at any age, to go into cardiac arrest.

When Luke had his anaphylactic reaction to peanuts his throat didn't close. His tongue didn't swell. He didn't wheeze or cough. Instead his blood pressure dropped dangerously low. Low enough that he began turning blue and was white as a sheet. Low enough that he couldn't stay awake - he passed out twice. Low enough that his oxygen levels when we got to the ER were in the 60's. What happens when blood pressure is affected during an anaphylactic reaction? It can eventually lead to cardiac arrest. My 15 month old baby could have suffered the same result as this young man. My heart goes out to his family. I pray for them. And I pray that I will continue to have the guidance to keep Luke safe.

Thursday, August 12, 2010

GI Follow Up Visit

Today was the follow up visit from the endoscopy that Luke had in July. He said that it showed very little inflammation, so no further testing, etc needs to be done. Excellent news! I told him that the allergist's office mentioned talking about an avoidance diet and he wasn't against the idea - I guess the thought is that something is causing his delayed allergic reactions, so going through an avoidance diet may help figure out what it is. My issue of course is, I don't think I want to go back to the same allergist. At this point I have to decide if I'm going to try another allergist in the same office office, or start over completely with a different office.

I asked him about the blood test results, and I left there even more confused. Apparantly he has some kind of result from it - except whoever entered the results in did it incorrectly. So instead of an IgE result for egg, and one for sesame there is a combined number. He said the number wasn't alarmingly large, but in the food allergy world, it doesn't really matter how high or low it is. Someone can be off the charts and have no reaction, or someone can have a fairly low number (like Luke's IgE to peanuts) and be anaphylactic to it. The fact that there was some kind of result makes me want to get to the bottom of it even more. Did it dawn on me at the time to ask him for the total number? No. And I'm kicking myself for that, even though it wouldn't really tell me much. So, I guess I'll be calling the allergist office and telling them that the GI doctor has some kind of result from the test, even if it's not the most helpful one. Maybe they can get it straightened out. The GI doctor felt that since Luke was so difficult to get blood from, it wouldn't be worth sending him to a lab to have it done again. I disagree - yes, I hate to put him through that. And I'm not excited about the idea of holding him down while they look for a vein. But not knowing what could possibly cause another allergic reaction is difficult. The more answers I have, the more confident I am in keeping him safe.

Wednesday, August 11, 2010

Dentist Trip




I'm proud to say that Cody did great at the dentist! I told him about the appointment an hour before we had to leave - he wasn't happy. There was a lot of crying, begging and pleading. I finally told him that I had to take him, or it would mean that I was a bad mommy and I'd get in trouble. That convinced him, although he still wasn't happy.

He walked into the room without any drama though, and other than demanding that they only take one picture of his tooth, he did well. They took one xray, and the dentist came in to look. No trauma, no infection. I have to take him back in 6 months for a follow up, and for the first *real* dentist visit. Hopefully that visit will be just as easy!

Headboard Re-Do

I've been looking at headboards for quite awhile. I wasn't happy with the color scheme of my room - the wall color, while ok, was too close to the color of my bedding. I'm too lazy busy to repaint, so I started looking into what I could do to break the color up a little. Insert headboard. Everything I liked was out of my price range though, and I wasn't interested in getting something cheaper, that I knew I'd end up not being happy with. So when I saw the post for a queen size headboard on freecycle, I jumped on it, figuring the worst that could happen would be that I wouldn't like it, and I'd have to freecycle it on. This is what it looked like when my husband brought it home (ignore the torn up look of the room, another post on that another day)...



Notice the globes? One of the top ones fell off when my husband picked it up, and shattered. But that was ok, because I would have removed them anyway. I primered it...




...and painted it with Rustoleum's Hammered Copper spray paint. And Voila!




Friday, August 6, 2010

Burger King Reaction Revisited, Scope Results, Frustration and Teeth

1. I'm not convinced that Luke's reaction in June after eating at Burger King wasn't anaphylactic. An anaphylactic reaction is defined by having 2 or more different areas of the body affected. Luke reacted that night with vomiting twice (GI Tract), sneezing and major nose congestion (Respiratory Tract), and severe sleepyness (either Cardiovascular or Neurological depending on if it was due to low blood pressure which would be cardio, or loss of consciousness which would be neuro). This chart here shows the grading of reactions - http://the-clarkes.org/stuff/ana.html. According to the chart, Luke's reaction that day could be either a 4 or a 5, depending on how his consciousness would be classified. His peanut reaction was a 4. I feel that his allergist is giving me wrong information, and possibly not listening to me as well as he should. I am also unhappy with the "emergency action plan" that he gave me (scribbled on a prescription pad), so we are in the process of finding another allergist.

2. We haven't met with the GI doctor for the follow up yet, but I did hear from the allergist's office, and the results are in. It showed some inflammation of the eosinophils, and they are recommending an avoidance diet. We see the GI doctor on Thursday, and from there we will be making an appointment with a new allergist.

3. Fairfax Hospital doesn't have any record of Luke's blood draw to test for egg and sesame allergies. None whatsoever. Super! So I guess that means we'll have to re-do it. Which will be fun, considering it took the hospital lab people forever to find a vein on Luke, and ended up having to take he blood from his neck. Not to mention I've waited 3 weeks for the results and still have nothing to show for it. I'm completely frustrated right now.

4. Cody has a tooth that is turning gray. He bumped it on Luke's head a few weeks ago, and last night I noticed that it is gray. So Monday will be his first trip to the dentist. Good times!

Thursday, August 5, 2010

Pneumonia

Pneumonia has hit our house again. A few days ago Luke's nose became runny again. My husband and Cody had both had a slight cold earlier in the week, so I figured it was Luke's turn. But again, it's not unusual for Luke to have a congested/runny nose. That's just how it has been for him since he was a few weeks old. Tuesday night he started a mild dry cough. Nothing major - just an occasional cough. Within 30 minutes of waking up Wednesday his breathing was very ragged, and he was coughing a lot. I didn't want to over-react, so I called my best friend who is a nurse in the ER. Told her what all was going on, she listened to him over the phone, and she said she'd take him in. During on conversation he went downhill a bit more - refused to eat breakfast, and started this constant whine. It was the same sound he made the first time he had pneumonia, so that was the deciding factor for me.

By the time we got into the doctor's office his breathing was very rough. The nurses were concerned as soon as we came in. The NP listened to him, watched him breathe without his shirt on, and decided he needed a breathing treatment. She mentioned at that point that he may need to go to the ER.

The breathing treatment did great, so they sent us on our way with an order for a Xray, and 4 prescriptions (2 breathing treatments, antibiotic and steroid). The xray wasn't much fun, but it went quick. Once we were home he sounded even worse, so I gave him his 2 prescriptions. He fell asleep sitting up on the couch, which is really unlike him. Watching him sleep was scary for me - he was so pale, and his breathing was so hard. When he exhaled it rocked his whole body. The NP called at 5pm to tell me that he did have pneumonia, and upped his meds a bit.

Thankfully he's sounding much better today. Still has an occasional cough, and is still a little ragged sounding. But not nearly as bad as he did yesterday.

So now I'm left with, why does he keep getting this? It's the 3rd time he has had it since Nov 2009. Of course reading online just makes things more confusing - reflux can be a cause. "Atopic" child is another one. Food allergies apparently can play a part. So my hope is that we will be able to figure out what the cause is, and soon, so that he won't have to go through it again.

Tuesday, August 3, 2010

Follow Me Back Tuesday

I came across this today and thought it was a great idea as I'm always on the lookout for new blogs to stalk follow.