Allergies

2 years old

It’s amazing to think that my baby is 2 years old! He has grown so much in this past year! And it is such a miracle to still have him here with us.

We had a great time celebrating his birthday. Since it fell on a Sunday, we spent the morning at church. We dressed him up in a new little sport coat. They sang to him in his Primary class and he got to go get a treat from the bishop.

After church and naps, it was time to get ready for the party. Since Sunday dinner is a tradition for both sides of the family, we decided to invite all of them to dinner together. I worked all the week before shopping and preparing food… ironic for a child who doesn’t eat. We did our best to pick foods he could share, though… and that wouldn’t take the party too long to eat so Patrick wouldn’t have to wait for them.

Patrick’s birthday dinner was simple, but his favorites. We bought him a personal sized bag of Baked Lays potato chips and a little cup with a bendy straw that we filled with water. Patrick LOVES eating chips out of the bag, so having his own was the perfect birthday treat and he had fun getting them EVERYWHERE around him.

After dinner, we gathered to sing Happy Birthday and blow out candles. Because Patrick can’t have milk, eggs, or sugar, I decided to make a non-food cake this year. I painted a round box and decorated it like a cake with cars everywhere, one of Patrick’s favorite things right now.

The street signs all had birthday messages on them. After blowing out the candle, we opened the cake instead of cutting it. It was filled with toy cars for all the kids to share.

Then we opened presents. Patrick made off like a bandit with about 20 small toy cars and a few big ones, shape sorters, balls, toy instruments and tools, books, puzzles, pop-up-pals and more.

Brian and I gave him our big present the day before so he could take it trick or treating… his very own Radio Flyer wagon. He wanted to help build it, so I gave him his toy hammer and soon he and daddy were both banging away.

It took me most of a day to clean up and make room for it all, but he plays with all the new toys almost every day… getting them out himself. He couldn’t be happier!

And the wagon – oh the wagon – has taught him a new independence. I can put his backpack in the wagon and he will push it around the yard all by himself for an hour or more. Just try to end this game before he’s tired and he’ll cry inconsolably.

Many thanks to those who helped to make Patrick’s birthday party a success. Those who helped cook, host, setup or cleanup. Those who made extra effort to come. And those far away who couldn’t come, but sent presents.

We all know what an absolute miracle this 2nd birthday is! Thank you for sharing with us in celebrating a momentous day!

As of yesterday, we are the proud owners of an EpiPen Jr.

A few months ago we started to notice that with some foods, Patrick got little red spots on his cheeks and chin. He also had a really odd habit of sticking his fingers in his mouth after eating. When he discovered french toast, I learned that the spots always came with that meal, so I started watching ingredients. Pasta produced the same results. Scrambled eggs turned his lips, cheeks and chin bright red. That’s when I stopped wondering and knew. Patrick is allergic to eggs.

So I called his dietician, who gave me a simple answer.. don’t feed him eggs. It sounded easy enough, but the spots appeared at other times, too. On top of that, I knew he’d need a flu shot and other immunizations and that those shots are often egg based.

3 weeks ago, when we saw the fabulous Dr. Jackson, Patrick’s GI, I requested a blood test for allergies to confirm the egg allergy.

Not only did that test come back definitively positive for egg white, but also for 9 other foods including egg yolk, wheat, oats, corn, peanuts, milk, soy, and even a trace positive for carrots.

I had heard that kids with Short Gut easily develop food allergies. The weak intestinal walls allow proteins to leak into the bloodstream, just like they let bacteria through. The extra exposure to undigested proteins can cause allergies. I just didn’t expect to be hit with so many positives at once.

I called his dietician again for answers, and she explained that not all the positives represent real allergies. They just represent a probability of an allergy. Therefore, I should avoid feeding Patrick foods that I knew he was allergic to, but there was no need to withhold ALL of the foods.

So I started cutting back on glutens to see if those might be contributing to a recent unexplained bout of stomach upset I was seeing in him. Patrick was pleased to be moving up to grown-up cereal instead of baby cereal, but not so happy with the fact that all the cereals I was now offering were rice. I bought rice noodles so that he could have pasta without eggs.

And I still felt lost.

I sent messages to his docs and dieticians here and in Seattle, but the common consensus seemed to be “we can’t really say.” I wasn’t sure which foods he could safely have, and I didn’t have any answer still about how to give him a flu shot. When you’re waiting for transplant, you’re preparing to be immune suppressed. Therefore, you should have every immunization possible.

Finally, I called Patrick’s pediatrician. (Don’t know why I didn’t try this before.) She said she thought it best for Patrick to see an allergist who could at least determine the safety of the flu shot. She gave me the name of one she knew and urged me to push to get an appointment ASAP.

When I called for an appointment, their version of ASAP was “our next opening is in December.” I tried Primary Children’s Allergy Clinic and was told: “We’re not taking any more appointments for this calendar year, and don’t have a calendar yet for next.”

So, I told Patrick’s practically-magic insurance case manager about the problem and she mentioned an allergy clinic that she knew our insurance covered. She said she’d heard good things about them, including short wait times. I called them on a Thursday afternoon and…drum roll please…scheduled an appointment for the next Tuesday.

That was yesterday at 9:15 a.m.

Over the weekend, Patrick had his most severe allergic reaction yet to banana pudding, which I shouldn’t have given him because of the sugar content, but am glad I did cuz it clued us in to allergies I would have otherwise missed. He also had a reaction to playing with a spoon that had been put into my Traci’s Peanut Butter Cup ice cream at Leatherby’s, even though he didn’t eat any food there.

I got up with Brian yesterday. This is, in itself, an accomplishment. But I knew I’d need time. Getting Patrick ready and out the door before 9 requires near superhuman effort, but we managed it, even with time to spare.

Knowing it would be a long appointment, I came with the essentials: a bag of toys, books, and videos; a diaper bag of medical supplies and emergency kits; their 8 page medical history questionairre; an 8 page “condensed” medical history of my own; my purse; and Patrick.

It took a while for the allergist to appear. I was grateful for the wait, as Patrick started to spit up yellow goo right after we arrived in the room. I dug tubes out of my emergency kit, found that his button had been plugged overnight, and coaxed enough drainage from his stomach to avoid him getting sick in the office… finishing just as the doctor arrived.

He apologized for making me wait, but explained that it took a time to catch up on the history I’d brought. Can’t fault him for that.
We talked about why I’d come and the questions I hoped to find answers for. He went through the results of the blood test and explained that for most of the allergens tested, the blood test does only reveal a probability. For most of the low scores, the probability of a reaction was pretty low. He did his best to assure me that these were most likely not a concern. If I hadn’t seen reactions, he was most likely not allergic.

Then we talked about the eggs, the pudding, and the ice cream spoon. He scratch tested for all of the ingredients I thought might be related – 7 allergens in all, including the specific isolated proteins of milk. They also did a scratch from the vial of flu shot that he was intented to have.
Patrick wasn’t happy with the scratches, but otherwise enjoyed sitting shirtless in the office watching Elmo on TV and playing with his backpack full of farm animals. (Thank you to my neighbor who provided Elmo in VHS.) I sat and watched the reaction.

The nurse explained the two “control” scratches at the top that represented no reaction and his worst reaction. (Scratched with saline and histimine respectively.) And I watched the hives that formed at each of the scratches. Only 3 scratches didn’t react. Patrick is not allergic to banana, lactalbumin (a milk protein), or the flu shot. All the rest, he did.

Patrick is allergic to eggs (yolk and white), milk, peanuts, and corn.

His reaction on all of these was a 2 of 5. This means that at present, the reaction is not deadly, but a 2 today can be a 5 with the next exposure, so we are to assume that all of these are.

Next, they gave a partial dose of the flu shot, watched for a reaction for half an hour, and then completed the dose.

While we waited, we got to talk to the doctor about what the results mean, complete some forms, and watch more Elmo. Since we were the longest appointment of the morning, Patrick also was free to take a pantsless walking tour of the halls of the office.

So, now the punchline… what do these results mean?

Patrick can outgrow all of the allergies, except perhaps the peanut allergies IF he avoids contact with the allergens. So for safety, comfort, and future improvement, Patrick should not be exposed to any of the above listed allergens on their own, or as an ingredient.

This means reading a lot of food labels.Some of the ingredients are listed under different names. For help in interpreting labels, check out this site: https://www.foodallergy.org/section/allergens

It’s also possible that he could have a reaction to something that you don’t expect.. either by accidental contact with one of these allergens or by coming in contact with something we don’t know he’s allergic to. (Like I said, Short Gut can lead to food allergies, so it’s possible there are allergies we haven’t discovered.)

Enter the EpiPen. We’ll make sure to train all you caregivers on how to use it. He’ll also carry benadryl for milder reactions.

And so, the adventure of having a child with food allergies begins. Please feel free to ask questions. Either we’ll help you understand, or you’ll help us know what more we need to learn.

All too familiar

Here we are again. Back at Primary Children’s hospital – battling yeast yet again.

Sunday morning, Patrick developed a fever. It started low, but after a couple of hours, it was evident that he didn’t feel well. It seemed to both Brian and myself that he was trying to communicate with us that he wasn’t feeling well and needed help.

We’d made it through 2 hours of church, but decided it best to leave before Sacrament meeting was over. We got home, took his temperature – 101.4 – and he was starting to have chills. So we packed up and headed to the E.R. as quickly as possible.

Once we arrived, things were pretty much the usual drill.. they gave him some Motrin, took his history, drew blood cultures and started antibiotics and antifungals.

It didn’t take long for us to get into a room. But we started out right away with excitement. Before the nurse had even finished her initial assessment, Brian noticed hives forming next to Patrick’s ears. Within 5 minutes he was covered with hives from head to toe and his lips and eyes were starting to swell. They turned off the antifungal medicine and the reaction stopped and started to reverse. We think that they ran that medicine faster than his body’s used to and it caused the reaction, but it was a very scary moment to think that our preferred antifungal medication might suddenly have become off limits.

That night, Patrick was really, really sick. His fever reached over 104 degrees and he was sick to his stomach. We barely slept at all. The only rest he got was if he had both Tylenol and Motrin in his system. The problems continued through the next day and the antibiotics and antifungals didn’t seem to be making much difference until afternoon when his fever finally broke for the first time.. But his blood cultures stayed negative all day.

Around 8 p.m. a doctor came to visit us, though, and gave us results. Patrick has yeast in his bloodstream again.

The rest isn’t unexpected, but that doesn’t make it easier. Today’s been scary, stressful, and exhausting. Especially since Patrick is not cooperating with me about sleeping in his bed and neither one of us has had a good night’s sleep since we got here.

We talked to the doctors early and they confirmed that we needed to pull out his line. They also explained that Patrick’s spleen, yet again, is sequestering platelets and his blood counts are falling to dangerous levels. This means transfusions again with all the potential complications that come with that.

We spent the morning getting a little more settled in. Social work and child life came to visit. Child life talked about ways that we can help Patrick to be less afraid while he’s here. They brought him a baby doll with a little oxygen mask and blood pressure cuff to show him that they’re ok. He gave the doll lots of kisses and snuggles.. But took the blood pressure cuff off.. I think he was protecting it. They came along to all the following tests and surgery, too, to help minimize the trauma of these procedures. This was a new experience, but he seemed to enjoy it.

We went down to ultrasound around noon. They were looking for fungal balls in his organs. The poor radiology tech and radiologist were very confused trying to understand the anatomy they were seeing. I tried to explain that his gut looks funny and that his gall bladder is so small it’s almost invisible.. but they still were pretty sure his small intestine was his gall bladder. As we were leaving, the technician said “He looks so healthy, though”.. implying that on the insides he looks far from healthy.

When we got back from ultrasound Brian was waiting for us. He’d been given the afternoon off of work to come help. I was so grateful he was here!

We hurried and got ready for surgery. Just as we were about ready, the resident from the infectious disease team came to examine Patrick and take a history. Surgery showed up to take us down before he’d finished his exam. Patrick was jumping on the bed. I said to Brian “He’s just jumping because he knows he’s about to loose his foot”, referring to the fact that he’d come back from surgery with an IV in at least one foot. The guy from surgery looked up and said “Wait. What? Do I have the wrong kid?” We had a good laugh after that.

We went down to surgery with the child life specialist and infectious disease doctor in tow. After talking to the anesthesiologist, we sent Patrick on his way in a crib full of toys. Then we sat down to finish the history with infectious disease. Before we finished, Patrick’s surgeon came in.

Dr. Rollins, the surgeon, talked to us about what a dangerous situation we are in as Patrick is running out of more and more places to put lines. We’re aware of this, but hearing it vocalized by our surgeon made it all the more real.

Worse yet, he called from the OR as they were trying to place peripheral IV’s to tell us that they couldn’t get them in and to ask my permission to put in a “shallow central” line in his leg or neck. Apparently, they’d stuck him 8 times attempting to place a peripheral IV.

In the end, though, they got 2 peripheral IV’s in. Infectious disease didn’t like the idea of using a central line at all and asked them not to leave one in. So we find ourselves in a scary position now. Patrick needs IV’s for his nutrition and medication. He also needs to have labwork drawn to keep a close eye on his fragile health.. and we don’t know where else they can get needles in.

After talking to the surgeon, they let me go back to the recovery room where I found Patrick just by following his screams. He was hysterical and they told me that the anesthesiologist had prescribed me as his pain medicine. So I sat and rocked him and eventually got from screams to whimpers to sleeping.. But that was the situation for the next 5 hours or so. Patrick screamed bloody murder whenever anyone but me or Brian touched him. He was only content being held and rocked by one of us.

He just woke up about half an hour ago, though.. and for once seems back to himself. They gave him medicine for nausea and started his last transfusion of the day and it seems to have him finally feeling better. The best news is that he doesn’t have a fever.

Right now, he and his daddy and playing with toys in his crib. He’s not 100%, but doing ok for now.

Prayers for IV’s to last, for veins to be found when needed, and for Patrick to feel comfort in a very scary situation would be appreciated.

The attending from infectious disease explained that they don’t think this is the result of an untreated infection. The previous infection didn’t grow back. Instead they think these infections are coming from his gut.. and we don’t know how to stop that for now.

A lot is still up in the air. I’ll post more as I know it.