The Mother of All Food Allergies

Right around the time that Raj and Asher were making their way to Cincinnati, I found the following article written by Dr. Putnam, who is Asher's main doctor at Cincinnati Children's Hospital.

"The Mother of All Food Allergies", by Dr. Putnam

It's all about me

The goal of this blog is to 1) share my children's development with family who live far away and 2) share what we have learned about their medical challenges in the hopes that it helps others.

But now I want to talk about me.

Asher's EE really scares me. I read what the experts write about it. I talk to other mothers of children with EE. I talk to Asher's doctors. The future for Asher scares me. I worry about his ability to eat food by mouth. I worry about the need for a g-tube or ng-tube. I worry about how it will affect his development - both mental and physical. I worry about his longevity - that his EE may shorten his life.

OK, I'm terrified about that last item. Will I lose my baby due to some disease that I don't understand? We always say that Asher is "freakishly strong and frighteningly smart". He is wise well beyond his two years. Is he a prophetic angel brought to us from some external being? Is there a special goal for him? Mainly, will his life be taken from us way before we're ready? That last fear sends me into a wild spin. It makes me want to hold him tight and not let him go. I want to try to protect him...except I can't. I fear this is beyond me. And that terrifies me.

The Results Are In

The results of Asher's endoscopy, colonoscopy, and allergy tests are in.

First, the bad news: the endoscopy revealed that he still has eosinophilic esophagitis and also eosinophils in his small intestine.

Next, the good news: there are no eosinophils in his colon. So, it could be worse.

This means that even with the three (yes, 3!) medicines he is taking as well as the extremely restricted diet, he is still suffering with EE.

Next we discussed a plan of action with Dr. Putnam. First, we agreed to stop giving him Flovent, because it simply masks the symptoms. Then, for the next three months, we agreed to restrict Asher's diet with everything we have already eliminated, plus eliminate all the foods to which he tested positive during the allergy testing. After three months, he will get another endoscopy to see if the eosinophils have gone away. If they have not gone away, then it means we have to put him on a liquid elemental diet. But we'll cross that bridge only if necessary.

The final allergy results also include corn. I look at the damage that corn created on poor Asher's back and it scares me to think that this kind of damage is occurring inside my son's esophagus. The skin that the corn touched is all blistered and raw - about 1.5 inches in diameter. Like poison, the corn burned poor Asher.

Immediately after the final results of the allergy test, Raj and Asher began their long drive home. Simi and I made a bet on when they would arrive. Simi bet they would return home on Friday and said that if he won, he wanted a matchbox car. I said they would return home on Saturday and if I won, I wanted a big hug and kiss from my boy.

When did they return home? Exactly midnight.

Aquarium Day

Wednesday was a day off from testing. In fact, all the tests are finished and now we're just awaiting the results.

With an entire day off, Raj and Asher headed to the aquarium. Asher has a love/hate relationships with aquariums. This is the third one he's been to (Boston and Pine Knoll Shores, NC are the other two) and he's both scared of them and awe-struck by them. He's particularly nervous about divers in the tanks, but yet he continually talks about them and is mesmerized by them. He'll probably be a marine biologist when he grows up.

After the aquarium, Raj took him back to the hotel (the Extended Stay hotel) for a nap, only to have hours upon hours of fire drills. Poor Asher couldn't nap yet he was exhausted from the long testing days. Grrrr. So Raj took him to the Dollar Store and let Asher have his pick of whatever he wanted. It must have felt like Christmas to Asher - all those toys!

This morning is our meeting with the main doctor, Dr. Putnam. We will get the results of the endoscopy and colonoscopy, talk about the preliminary results of the allergy testing, and make a plan of action. I can't wait.

Allergy Testing Day

Today was allergy testing day. They tested for 35 foods. They did the skin prick tests on Asher's arms and the patch tests on his back.

The skin prick test results show allergy to:

Turkey
Egg yolk
Wheat
Barley
Mold II
Cat

The turkey was the big surprise. Between his lunch and dinner, he eats turkey at least 3 times a week. No wonder he still struggles with his eating.

We don't really feed him barley, so we don't have any experience with it. Egg yolk and wheat are no surprise at all to us; neither is cat. I'm not really sure what mold II is; we'll have to talk with the Dr. about that one.

I'm glad he didn't test positive for rice or potatoes. He eats a lot of those.

Now, I'd bet the house that it's dairy that makes him vomit. And he's shown a reaction to corn in the past; where is that one on the list? And the formula he was on when first diagnosed was soy/corn - I don't see those anywhere. What's up with that? Lots of questions linger...

The patch tests stay on Asher's back for two days. We get the results of them on Friday.

We have officially stopped torturing Asher with all these tests. Tomorrow is a day off. Thursday we meet with Dr. Putnam to get the results of the endoscopy/colonoscopy and get a plan of action. Friday morning is the results of the patch testing, then they get to come home! I can't wait; I miss them both so much!

Endoscopy/Colonoscopy Day

Today was the endoscopy and colonoscopy. To prepare for them, Asher had to stop eating Sunday morning. That's right - no food at all for nearly two days! He was allowed clear fluids on Sunday, then nothing at all from 9:30 AM Monday until 2:30 PM when the endoscopy and colonoscopy was scheduled.

To make matters worse, Asher needed to drink 3 separate doses of bad-tasting medicine, then have four enemas to clean out his system.

Asher did great. He didn't complain at all about not eating or even not drinking. He didn't complain at all about the enemas. He just went with it.

Now for the good news: Dr. says that everything looked good. He does so many of these that he can usually tell by sight if there is eosinophils in the esophagus, intestine, etc. Of course the biopsy results are the definitive answer, but it's reassuring to know that things are looking so good.

Asher was so mature that all the nurses said he behaved like a 5 year-old. That's my boy.

And now the worst is over. It gets easier after today.

Tomorrow is allergy testing. I'll try to update again tomorrow night.

Asher's Big Adventure

I've written before about Asher's food allergies. A year ago, he was diagnosed with eosinophilic esophagitis, which is a fancy word for food allergy.

Traditionally, when you think about an allergic reaction, you think about, perhaps, watery eyes or sneezing or itching. Those are reactions that occur on the outside of your body. Asher's allergic reactions happen inside his body: his esophagus, and perhaps his intestines and bowel. The reactions do not occur immediately - we find out about them about two weeks after he's eaten a food when he vomits or stops eating. It makes diagnosing very difficult. We have some ideas, but we don't know exactly to what he's allergic.

Eosinophilic esophagitis is a relatively newly discovered disease - about 10 years old. Prior to 10 years ago, they simply thought that it was reflux that didn't respond to medicine. There is a lot that the medical profession still doesn't know about it. And there are only three centers for pediatric eosinophilc disease in the country. We've been seeking medical help nearby, but we need more. So we're taking Asher to Cincinnati Children's Hospital for further medical help.

For the past seven or eight weeks, I had been trying to make an appointment at Cincinnati Children's. I was just about to give up and make an appointment at one of the other two EE centers when I received a call late Monday afternoon. There was a cancellation next week; can we make it? A resounding YES was the reply and we've been scrambling to collect medical records, biopsy slides, arrange travel and hotel and prepare for the trip.

We decided that Raj and Asher were going to make this journey alone. Logically, it makes sense. With all kids in tow, it becomes a zoo and then we can't concentrate on Asher. We wouldn't be able to ask the questions we need of the doctors or help Asher with his medical procedures. Best for Raj to take Asher alone.

So now Raj and Asher are making their way to Cincinnati. Asher has appointments all week long there. On Monday, he'll have an endoscopy and colonoscopy - to examine the extent of the damage. (We had just assumed that the allergy is strictly in his esophagus, but as we answered the nurses questions, it seems like his allergy might also be in his intestine and bowel.) Tuesday is the allergy testing. Wednesday they have a day off, then Thursday they get the allergy tests read and get a plan of action from the doctor. Friday, is the result of the patch (allergy) tests. Then they'll make their way home on Saturday again. Phew!

For those who suffer from this disease, I'll chronicle Asher's journey here. I hope it helps you.

Leila at Four Months

Leila just had her 4 month check-up. She weighed in at 17 lbs, 4 oz. That's in the 97th percentile for weight. What a fatty!

In comparison, Simi was 17 pounds at his 9 month check-up.

I'd tell you her length, but she measured shorter at four months than she was at 2 months. Since there is an obvious mis-measurement, we'll just wait and see how long she is at 6 months.

Leila's doing great in every way. She's right on target developmentally. She's such a happy girl, so easy going, yet undeniably fights for what she needs. That's my girl.

Bad Parenting

Usually, I try to write about the good side of my children. They really and truly are good kids, although sometimes, like all children, they have their moments. Lately, however, they've been the biggest brats on the planet.

Since Leila's arrival, Simi and Asher have been spending all their time together. Seems like they're spending WAY too much time together and are starting to feed off each other's badness/get competitive with each other/get on each other's nerves/fill in the blank here.

The other night, during a celebration dinner for their Aunt, Simi and Asher turned into THE BIGGEST BRATS. They've never behaved so poorly in their lives - and they did it in front of a big audience. After the usual parenting techniques failed, I resorted to dysfunctional behavior - I screamed at them to stop. And at one point, to get Simi's attention when all else failed, I picked him up, put him on the couch, and YELLED at him to stop. I'm not proud of my behavior and the whole scene really shook me up. It shook up Simi too. He started to cry and the look on his face was just horrific. Yet it didn't stop his bad behavior. I hated the way Simi and Asher behaved and I hated the way I behaved. In a word, it was horrific.

The next day we went to a friend's 5th birthday party. While there, the mother of a little girl was screaming at her daughter. I recognized that behavior in my own actions from just the night before. So THAT'S how horrible it looks. From the outside, the screaming was as bad as it felt from the inside. I hope to never ever do that again.

Stay tuned while we figure out how best to conquer these new challenges....

Toddler Humor

Jokes by Asher (age 2):

Have you ever seen a fish go fishing?

Have you ever seen a train go training?

Toddler Soccer

Finally, Asher is playing soccer. He has been begging to go for quite awhile; ever since he realized that Simi plays and he doesn't.

Today was his second soccer session. At this age, they don't have games or even divide into teams. Instead, everyone has their own ball and they play activities designed to strengthen muscles and teach basic skills.

Toddler soccer is adorable. It's a bunch of 2 and 3 year olds who are running around clueless. Normally, some are crying, some are banging themselves into walls, and some have the potential to be the next Pele.

Considering that Asher has only kicked the ball once before, he did great. When practice first began, he ran out onto the field without me and I felt this tinge of emotion, watching my baby acting like a big boy. Emotion got me even more as he dribbled downfield and upfield and followed the coach's directions. And then, as much emotion as I felt, perhaps he felt it too. He ran up to me, took my hand, and led me to the field to continue. Together, we had a wonderful time jumping in and out of hoola hoops and weaving in and out of cones. And just about the time when he was ready to leave, the session ended and it was time to go. Perfect timing. I can't wait to do it again next week.

Next time I'll bring my camera.