Mystery Hives

To all my loyal followers (I think there's 4 of you now!), as well as those who happen upon my blog by chance, I would sincerely like to apologize for the lack of posts. Spring is busy for us, and as the title suggests, I'm about to call in Scooby Doo and the gang to help solve our mystery...hives!!!

It was Easter sunday, we had attended a few small family gatherings, and closely monitored not only what Connor ate, but also what everyone else was eating around him. By now, my mommy senses are pretty keen, and both grandmas had consulted me on menu options, so I was pretty confident the day could be enjoyed by all. In true Connor style, he wanted no part of the foods prepared especially for him, and instead went for his old standby - hot dogs and Oreos. Like a college kid lives on Ramen, my toddler lives on Oreos and hot dogs. Strangely enough, he's still small for his age/height. Do you have any idea how big I'd be if I gorged myself on hot dogs and Oreos everyday????

Back to the mystery. While visiting my mon that afternoon, Connor had been digging at his arm, and after closer inspection, we figured it was a contact reaction, such as cat hair or dog licking. Gave him some Benadryl and all was well. Fast forward through the evening, we get him ready for bed, and put him down for the night. Or so we thought. He kept whining and squirming for over 2 hours, which is not normal for him. I went to check on him, noticed he was scratching again, and unzipped his jammies to find he was absolutely covered in hives. Keep in mind this is a good 8 hours after he last ate, and that was safe food. I was ready to call the nurse line or take him to the ER as we had never seen hives present on him like this. My husband said to give him Benadryl and see what happened. He didn't seem to be having any respiratory distress, so I reluctantly decided to monitor at home for a while. About 20 minutes later the hives subsided, so we changed him and his bedding and he was fine for the rest of the night. I wanted to make an appointment with the allergist, my husband disagreed, saying it was an isolated incident. I made the appointment anyway, and when I told my husband the next afternoon that the hives were back, he agreed Connor needed to be seen. Now, I don't make it a habit to go against what my husband says, but I am Connor's primary caretaker, and I'm the one who deals with all of the issues surrounding the allergy, so I think (and my husband is in total agreement) that I have complete carte blanche when it comes to Connor's allergy care, simply because I know more about it, the reactions, the connections, all that good stuff.

We couldn't get in for four days, but I caught the doc before he left that Monday and he had me do an aggressive round of Benadryl and steroids to keep him under control until he could be seen, and he asked me to bring the photos that I had the presence of mind to take as documentation. Four days, $550 (insurance covered a good chunk of that) and a few dozen allergen pinpricks later, we had no idea what was causing the hives. Or why they show up so randomly. We were instructed to give him an anthistimine daily, and we were given a standing order for children's oral prednisone for when he gets really bar. Now prednisone is a nasty drug, both in terms of taste and side effects, but they have a new chewable children's version that tastes way better (and costs WAY more!). So for now, we're managing, but the mystery deepens...

Yesterday he was covered in itchy little pinprick bumps, not hives. What the $#%*?!?!?!

Connor Update

I apologize for not updating sooner, but there was really not a lot to update on. The test results we were waiting on FINALLY came back after a little more than two weeks of waiting, which, if you've ever waited on important test results you know it feels like an eternity. Only problem was the expensive blood test that we had to have done said he wasn't allergic to peanuts. Or eggs. Time to jump for joy, right? Wrong. Anyone who's ever dealt with allergies and allergy testing knows it's not that easy.

With peanuts, there are six different proteins you can be allergic to. They tested for one. No wonder it didn't show he was allergic, there was only a 1 in 6 chance that they were testing for the right protein. And they didn't even test for eggs, so of course the level of IgE was zero. So where do we go from here? Back to the drawing board? No, not quite. Back in the car, out to Tigard to pick up a vial, then to the office where they do the actual blood draw, back to the allergist's office again, then back home to wait. And wait. And wait. Again.

After what seemed like forever we finally got some answers. Connor is allergic to a strand of peanut protein that he could possibly grow out of. Yay! If he doesn't grow out of it by age 5 or 6, then we'll know it's a life-long issue. Boo, but yay for knowing at a relatively young age if it's going to last forever. And he is allergic to egg whites, with significantly higher IgE levels than with the peanut test. So I'm assuming that means he's more allergic to eggs than to peanuts, but I'm not 100%. The plan is to re-test every year to see if the IgE levels go down over time, which is a good indicator of how likely it is that he'll grow out of the allergy(ies). But the good news is we made it through the holidays without any reactions, and are coming up on the 1-year anniversary of when we became PA parents, so far without any reactions that required more than benadryl. In addition to the peanuts and eggs, the initial test results showed that he's allergic to milk, which was shown on his skin test at his first visit, cats, and dogs. Dogs. After the skin test said he wasn't, the allergist suggested we get a dog to be around him so it could help bolster his immune system. Now we've adopted this dog, whom we've grown quite fond of, and Connor is actually allergic? Turns out he's only allergic to Max's saliva, so if he gets licked he breaks out, but it's only a contact reaction and not systemic or anaphylactic. So we get to keep the dog, and just have to try to keep him from licking, which is sometimes a challenge!

And now, we wait...

Since the egg allergy's progression was really concerning us, I made an appointment for Connor to see his allergist to find out what was going on. They had originally predicted that he would outgrow the egg allergy by his first birthday, but now, at almost 15 months old, his egg allergy is getting more sensitive and the symptoms are more severe. The doctor really didn't know why it was doing that, and he told us that it wasn't common for this to happen. I had a list of questions with me, many of which the he didn't have the answers to. And don't get me wrong, we are very happy with our allergist, and it wasn't because of a lack of interest or knowledge that he didn't have the answers. He suggested further testing to find out exactly what was going on.

We also discussed Connor's respiratory issues. He asked if he's ever had croup or bronchitis, which is a common thing among young boys, especially those with allergies. I told him that this winter he had two or three different bouts of croup and has been treated a few times for early bronchitis. He gave us some Singulair to try the next time he has a cold. He says that if we give him the Singulair once a day at the first signs of a cold it can help keep the virus from going to his respiratory system and help prevent croup and bronchitis. He gave us some sample packs to try, and if it works we have a prescription that we can fill later. Hopefully that will make this coming cold and flu season a lot less eventful than the previous one. ER visits, nebulizer treatments, antibiotics, doctor's appointments, sleepless nights, will hopefully not be nearly as frequent for us this time around!

So back to the testing that the doctor wanted us to do. He suggested getting a comprehensive blood test done to find out exactly what's going on now and what we can expect for the future. I'm not sure exactly what the test is called, I don't know if it's the RAST test or a different one. Apparently there's only one lab in the country that does this test, so we have to wait two weeks for the results. I'm not overly thrilled about that, but the wait will definitely be worth it in the end. We had to go to a lab down the street to have the blood drawn, and it took myself, my daughter, and a nurse to hold him still long enough for the other nurse to draw the blood. Thankfully they only took a tiny little bit, because he was not happy about having to be held still, and I wasn't happy about having to hold him. We took the blood back to the allergist's office, and they were having it FedExed overnight to Michigan to the lab where it would be tested for 150 different things. We should find out exactly what Connor's allergic to, which strains and proteins of each allergen, egg yolk or egg white, or both, if he's likely to outgrow his peanut allergy and if he's allergic to the protein that causes severe reactions or one that we can possible treat with exposure therapy when he gets older. So all in all the test is a going to be a good thing to have, I just hate that it takes so long to get the results.

This is going to be a long 2 weeks...

Our Trip To Shari's

After a weekend away with just myself and the kids (hubby had to work all weekend), we decided to go to Shari's for dinner. We hadn't been there with Connor since his allergies were diagnosed, so I was a little nervous about the safety of the foods, especially with the in-house bakery and the full-spectrum menu. I talked to our server, and she said that her little one also had a peanut allergy and he always ordered pancakes and never had a problem. That sounds like a great idea, right? Well, if your little one isn't allergic to milk or eggs, that's perfect. But for us, with a little one who is allergic to both milk AND eggs, it was not an option.

She then told us that they have a food allergy binder with a complete ingredient list for every item on their menu, as well as possible allergen contamination. It was very easy to follow, and it saved us from making a huge mistake. I figured that the rice pilaf would be a good option as a side dish, and the binder told us it contained or could contain milk, eggs, peanuts, tree nuts, as well as four or five other allergens, none of which pertained to us. We ended up sticking with fruit and sausage links, but I think there may have been some close contact with eggs, because he did end up with a few little bumps around his mouth, but not enough to need any kind of medication, and they didn't seem to bother him.

All in all I would say Shari's is a good option for people with allergies given they have a binder with all the information, but for those of us who have to worry about cross-contact contamination, it is a little hard to trust cooks when you don't really know how much experience or knowledge they have with food allergies and the possible spread of allergens. I don't know if we'll go back, but not because of anything Shari's did. There's just not a lot of options for my little guy there. If it were just peanuts we had to worry about it would be one of our top restaurants. But when your kid can't have pancakes, waffles, scrambled eggs, grilled cheese, omelets, french toast, or anything from the fryer, it really limits your options. I do feel comfortable with Shari's allergen policies and willingness to work with customers with allergies.

Hives, Hives, Hives!!!!

As careful as we try to be, there are occasional slip-ups (usually related to milk, never peanut) that cause a little stomach upset and then it's done, most of the time Connor doesn't even seem to notice. However, after visiting McDonald's one morning, the poor baby had hives covering the front of his neck. I rushed him home and got him some Benadryl, which thankfully worked very quickly at getting rid of the hives. I called his allergist to ask them what they thought the problem was, since I was reasonably sure that there was no peanut contamination, although they had forgotten to leave the cheese off.

For those who may not be familiar with our situation, my little guy is allergic to milk, eggs, almonds, and peanuts, with the peanuts being the most severe. After his skin prick test we were told that he would probably outgrow his egg allergy by his first birthday, milk could take a little longer, and it would remain to be seen with the nut allergies, though we weren't holding out hope. Connor seemed to do fine if eggs were baked into something, such as cookies, but we didn't test it much with more plentiful forms, such as scrambled eggs, potato salad,  etc.

So, back to the phonecall to the allergist. I asked them if his milk allergy was severe enough to cause hives, and such a big patch of them (the biggest he's ever had). They told me that, according to his chart, milk was his least sensitive allergy and would only cause stomach issues. They figured that the sausage on his sandwich was cooked in close proximity to eggs and that the contact had transferred enough egg to cause a reaction. He had eaten breakfast sandwiches from McDonald's several times before, and never had a problem. So either they put egg on the sandwich and then took it off, or his allergy is becoming more and more sensitive. He also had a reaction to a flavor of Pop Tarts that had egg listed on the allergen warning, and broke out after having just a piece of one. So I think he's becoming more sensitive.

I was also unaware of the severity of symptoms that egg allergy could cause. I was under the impression that, like milk products, eggs would just cause gastrointestinal issues. I realize that by saying "just" implies that stomach pain and diarrhea isn't a big deal, but believe me, it is. I say "just" in the sense that the gastrointestinal issues are much less dangerous than hives and anaphylaxis. Apparently, egg allergies, if severe enough can cause the same symptoms of peanut allergy; hives, swelling, trouble breathing, and can need Epi-Pens to relieve the symptoms and prevent a very bad situation.

This conversation with the nurse was full of information that I was previously not given. I did not know that every time he had hives I was to give him Benadryl, and if they hives did not subside within 15 minutes to call a medical professional for advice. I was also told that if he ever has hives on or near his face and he starts coughing, to give him his Epi-Pen and take him to the hospital. They say this because since he is so young he cannot communicate his symptoms to us (he's only 15 months old), and that coughing is a sign of internal swelling and narrowing airways. Talk about scary, especially after thinking that eggs were not a huge danger, and were probably getting less and less sensitive, therefore becoming less and less of an issue. Wrong!

So we have now had to re-evaluate our safe foods lists, again, and had to modify what we allow ourselves to have in the house, and will be visiting the allergist again soon to try and come up with a new game plan and some answers as to whether or not this means that his peanut allergy is going to be a lifelong issue. I mean, if the one that was supposed to be outgrown the earliest is in fact getting worse, wouldn't it stand to reason that the most severe isn't going anywhere? We'll keep you posted. For now, eggs are out!

Is soy milk safe for PA (peanut allergy) kids?

So in addition to having a life-threatening peanut/almond allergy, Connor is also allergic to milk. Seems like an easy fix. Give him soy milk. They even make vanilla and chocolate flavored soy milk for a treat. And soy ice cream. Problem solved, right? I wish.

I had planned to keep Connor on his soy toddler formula for a while longer because it was better for him, easier to tote around with us, and I knew it was safe. Only problem is the nearest store that carries it is over 60 miles away. Not so convenient. So I called his allergist and asked if it was okay to switch him over to soy milk, since he is still pretty sensitive to dairy. They said it was fine, so off to the grocery store I went.

Now I myself am a big fan of Silk's chocolate soy milk, so I reached for a carton of their vanilla flavored to try him out on. For some reason my mommy alarms started going off, which prompted me to read the label. I was glad I did when I saw that it may contain almonds because Silk also makes almond milk and apparently there's enough of a chance of cross-contamination for them to put a warning on their label. I'm glad they did, though, otherwise our evening could have been frighteningly eventful.

I put the Silk back and reached for the brand next to it, which was Safeway Organics, distributed by Safeway's dairy brand, Lucerne. The label didn't list any allergens, including soy (hello, it's soy milk!)*I didn't want to take any chances, so I called the customer service number on the side. While circling the store with two kids in tow listening to elevator music while on hold. Twenty, count them, TWENTY minutes later the lady that has placed me on hold off and on while researching this told me that the information was not available to her and she would have to contact the distributor and get back to me within 2 business days. So, what, I'm supposed to camp out with my kids and my grocery cart in the dairy section of Safeway and not give my one-year-old a bottle until you find the information that's supposed to be clearly labeled on all of your cartons? Sounds fantastic. Not!

By this time I am incredibly frustrated, the kids are getting restless, and I still have no soy milk. I return to the dairy case to put the Safeway carton back, after all I'm not going to chance it, and I see this little carton with a sunshine on it, and lo and behold, it's soy milk. I cross my fingers and dial the customer service number, where a cheery gal tells me she doesn't think it's an issue but would like to double check. Less than two minutes later she's back on the line saying she's confirmed that there are no nuts anywhere in their facilities, and then asked if I would like for her to send me some coupons in the mail. She also referred me to their website for more information on their products and where I can find them. I think I've found our solution. Finally.

Connor made the switch to soy milk that night without any problems, gave up the formula cold turkey. I was even able to mix in some Nesquik powder and give him a chocolate milk treat when he wasn't feeling well. We've gone through several cartons already, and thankfully there are at least two different stores in our small town that carry it, so we'll always have a back-up.

In case you're wondering what our miracle soy milk brand is, it's 8th Continent Soy Milk and I have been nothing but pleased with it. Visit their website at www.8thcontinent.com for more information and to find out where you can find their products in your town.

Whew. All this drama in the dairy section makes me want a snack. Ooh, a Reese's Peanut Butter Cup would really hit the spot right now. I'll just grab a few...oh wait, I can't do that. Check please!

*I'm not 100% clear on allergen labeling laws and regulations, but I think if a product contains enough of any of the major allergens it has to be clearly labeled below the ingredients list. There may be exceptions for things that are obvious, i.e. cheese doesn't need a milk label, soy milk doesn't need a soy label, but I'm not sure. Most of the other brands I checked listed soy as an allergen, so if it doesn't list something that I know for sure is in it, I can't help but wonder what else they're not listing, so when in doubt, check 'em out!

Where It All Began

For my son's first Valentine's Day, my mother-in-law got him an adorable puppy-shaped box of chocolate covered animal crackers. Since he finally got a few chompers, and the cookies were small (about the size of a quarter), I decided to let him have one during playtime. A few minutes later I noticed my usually laid-back boy was fussing and clawing at his face and eyes. Upon closer examination I saw his face was covered ear to ear with little raised bumps, and his hands and eyes were puffy. I got him to the doctor's office right away, and they said it was an allergic reaction to something he ate and to see his regular doctor the next day. They also said that as bad as this reaction was and as quick as it happened, the first reaction is never the worst. It's the second and subsequent reactions that are far more severe than the initial reaction. I took the box of cookies with us, and on the ingredients list it said Contains: Milk. It then had a little disclaimer that said "Manufactured in the same facility that processes peanuts." His regular doctor referred us to an allergist in the city, and we had an appointment the next week. This is when my life changed forever.

On his big sister's sixth birthday, my little man was being poked in the back dozens of times for an allergy test. Within minutes I was told that he was allergic to milk, eggs, almonds, and peanuts. Peanuts. The one allergen we had been dreading since the whole ordeal started. Keep in mind that the cookie Connor reacted to didn't actually have any nuts in it. It touched something that also touched a product with nuts in it. The doctor told us the importance of keeping Connor away from not only peanuts and almonds, but all nuts, as they are usually processed in the same facilities, which leads to cross-contamination. He then gave me a prescription for Epi-Pens. Notice the plurality. We don't get just one. We have two. And it's not so we can keep one at home and one in the car. We have to keep them together at all times because if he ever needs them and we are more than 25-30 minutes away from a hospital, he will need a second dose. And did I mention you have about 30 seconds to get the first dose into him before he goes into anaphylactic shock? Keep in mind we're talking about a baby. MY baby.

That night I picked up his prescription and sat my husband down with the informational DVD and training devices to learn how to use the pens appropriately and become comfortable with them so we would be ready, willing, and able to perform the heart wrenching job were it ever necessary. After the initial shock wore off, I had time to sit down and think some harrowing thoughts:

- If the cookie only came into contact with the same surface as a cookie with nuts, what would have happened to him if I had shared a peanut butter cookie with him at a coffee shop?

- If the reaction to cross-contamination would be more severe next time and the times after, how severe is contact with an actual peanut product going to be?

- I am now going to have to rely on the honesty and completeness of big corporations and their nutrition labels. And that could determine whether or not my son stays out of the hospital, or worse.

I don't know if reaction by cross-contamination is less severe than a reaction with say, a peanut butter cookie, but I do know that with my little one, even the slightest trace of peanut breaks him out in hives pretty quickly. We haven't had to use the Epi-Pens, and my hope is that we never will. From now on I will have to be vigilant in reading, contacting, and even cooking and baking my own safe-foods at home to prevent any kind of reactions.

And you have no idea how bad you start jonesing for a peanut butter sandwich or some chocolate peanut butter ice cream after four months of not being able to touch the stuff. Not to mention peanut butter cups, peanut or peanut butter M&Ms, Hershey's with Almonds, etc.