"Quod me netrit me destruit."
What nourishes me also destroys me.

Saturday, February 26, 2011


Written on February 22, 2011

It has been almost three years to the day Zane was diagnosed with Eosinophilic Esophagitis.  I spent the last two and a half of those years living in fear.  Initially, I feared Zane would be allergic to all foods.  A few months after his diagnosis we learned he is, in fact, allergic to everything.  Then I feared he would never outgrow those allergies.  I feared my daughter would also have the disease.  I feared the disease would spread.  One of my biggest fears, however, was that Zane would have to be fed through a feeding tube.  I previously wrote that a feeding tube might be the one thing that “puts me over the edge.”

About forty minutes ago, I kissed Zane goodbye so he could undergo his fourth surgery and his fourteenth endoscopy.  When he returns to me he will have his peg and I will have to learn how to administer his feeds five times a day through his tube.  I will have to learn how to clean it and care for it.  I will have to learn to deal with the comments and/or ignorance from others.  Although, Zane hasn’t come back from surgery yet, I am here to tell you that there is life after the tube.  It was a long road for me to get here.  It was a long process to be okay with this decision.  But, I finally am and it is so liberating.

At Zane’s weight in on February 21st he weighed 15.6 kilos (34.95 lbs) with his clothes on.  When we were last here in Switzerland in November of 2010, Zane weighed 17.9 kilos (39.38 lbs) with his clothing off.  So, he lost quite a bit of weight.  But, it wasn’t a rapid weight loss – it was a long and agonizing process.  One which created a lot of tension between Zane and I because I was constantly nagging him to drink his formula and eat some food and he constantly refused.  His hunger slowly turned into starvation.

In the early 80s my father glued himself to the television news for weeks to watch hundreds of thousands of Ethiopians die of a famine of “Biblical” proportions, as one BBC reporter famously explained it.  I remember one scene quite vividly.  Huge flat bed trucks arrived in one refugee village to deliver bags of wheat emboldened with the American flag.  Ethiopians flocked to them to receive their share of wheat.  They quickly became aggressive and two Ethiopians began to fight over the same bag.  Each person pulled on the opposite end of the bag until it tore in half and wheat flew everywhere.  Other Ethiopians quickly flung themselves to the ground to collect what had fallen.  I remember watching thinking that they were acting like complete savages.  But, now I know better.

Hunger is quite a powerful human feeling.  It is persistent and nagging.  It will rumble in your stomach unabated with determination until it is fully satisfied.  It is enough to drive a person mad.  Our basic animal instincts kick in and you will do anything or eat anything to survive.  I’ve seen it in Zane.  He spent nearly a year on an elemental only diet.  He begged for food.  At a park once, he spotted a kid with a bag of popcorn.  Zane’s stare immediately locked in on the bag.  He ran straight for the boy and took him down with one quick unsuspecting blow to get to the popcorn.  The boy fell to the ground and was immediately stunned into compliance.  He was merely collateral damage.  The elemental only diet was too strict and harsh for me to maintain.  I wasn’t strong enough to watch my son crave food every minute of his life until it became his one and only obsession.  So, I gave up.

This time it was Zane who gave up.  It started in November when he stopped drinking his Neocate Splash.  Then by January he stopped drinking his Elecare.  By mid-January he was eating less and less food.  It was a gradual starvation until he would go a whole day without food and would only drink a few sips here and there of his nasty, foul-tasting formula.  He was so tired of it that he would gag at the site or smell of the Elecare.  Initially, he was just a bit crabby.  Then he gradually became a bit more aggressive and unpredictable.  He was angry and frequently lashed out.  Some days he would spontaneously combust into the most horrible tantrums lasting hours until he just fell asleep from exhaustion.  A few days before coming to Switzerland he became lethargic.  He didn’t want to play as much and would fall asleep in odd places at odd times.  When he wasn’t sleeping you never knew what would set off the next big melt down.  One night he asked for rice pasta with salt and butter.  I handed it to him on his favorite blue plate.

                “That’s not what I wanted,” he yelled through tears.

                “Tell me what you want, Zane,” I said.

But once the dam broke there was no holding back the deluge.  He would go from unwanted pasta to hating school to no longer liking to wear a particular shirt.  His thoughts and emotions were random and scattered.  That is what hunger does to you.  You can’t think straight anymore.  Imagine having a small itch that can never be scratched.  It starts off small but if you don’t scratch it, it eventually takes on a life of its own.  That is what hunger is to Zane and others who suffer from eosinophilic gastro-intestinal disorders.  So, an intervention was desperately needed.

So, here I am . . .  taking on what was totally unthinkable only three years ago.  It highlights the strange dichotomy that exists when dealing with a chronic illness.  On the one hand, you have to constantly battle with the disease while also learning to live with it and accept it for what it is.  I’m trying my best to be strong and accept things.  I am also trying not to fear what hasn’t or might not even happen. 

It has been a few days after surgery now.  It will take a month and a half for Zane to gain back the weight he lost.  I already see him returning to the kid he was before hunger took over his body.  For the first time in his short little life he is no longer hungry.  He actually feels full.  His energy level is slowly coming back.  He smiles more and jokes about silly things only four year old boys think are funny. 

“Mommy, look, I can eat two things at the same time,” he said as he ate a rice cake while the nurse administered his feed.

That’s my boy.


  1. Oh, Nancy.... My heart is with you. I cannot imagine what a hard time this must be for you, but food in your baby= sooooo worth it. It is hard to come to terms that this will to maybe be a reality for us, but one thing I have learned through your blog and so many others is there is no rhyme or reason to eosinaphilic disease. I hate it. You and Zane will be in my prayers. Xoxoxooxxo please keep us updated on his progress AND how you are doing! You are a hero!

  2. My 3 year old daughter just went through the same thing. It was an emergency installation after all other options failed. It's been two weeks and three days now that we've been able to feed her with the tube Mike-key button in her stomach. She is also autistic so it is we have not been able to explain things to her very well verbally, and because the site is still sore she fights when we have to attach/detach the tube and clean the site, but she submits to the feedings and has a new brightness and energy to her, her eye contact is suddenly great. She is sweet, cuddly and affectionate. I think that EE is not hurting her throat for the first time in a long time. And I am not coaxing, cajoling, bribing and threatening her to eat. We had a very hard time getting to this place too, but things really are getting better with the tube. I can see her gaining weight and it feels so good to really be able to feed my baby again. I've been blogging about the experience at www.babybabyracer.blogspot.com

  3. Hi Nancy, I just wanted to check in and see how Zane is doing with his tube. My Tallulah has had a couple of hiccups with hers, a few days of throwing up, adjusting the volume and flow rate and that is fine now, and then some granulation tissue that had to be removed from one side, but she continues to grow in weight and strength and I am so glad we took this final step. I hope that it is all working out for Zane and you as well. Best!

  4. Zane is doing ok. He has been vomiting and / or feeling nauseous the last few days. Perhaps that also has to do with flow / volume, etc. He has never had so many calories in his life. Also, he has been experiencing some pain in his lower abdomen that goes into his lower back. An ultrasound showed that his intestines looked a bit distended but that can be caused by anything really. Hopefully it won't be anything serious. Today for the first time he started to walk a bit more upright than he has the last few days so I think that is a good sign as well. It has only been 2 weeks since surgery but he is getting stronger and better. I am also really glad we got the tube. I wish I had done it sooner. My only stress now is school. They don't want to feed him through the tube. I need to figure out what the best learning environment for him will be. Thank you for following up. Very thoughtful of you. I did visit your blog as well. And I LOVE the name Tallulah.

  5. Our son was just diagnosed with EE on March 24th. This has been my worst fear for him in all of the research and learning that I have been doing that I have discovered. We are going to see an allergist on Wednesday this week and are anxious to start him on a food soon. He has been on an elemental diet since March 16th. Thank you for your blog and your encouragement! I pray that our Nathan doesn't require a feeding tube, but I am constantly telling myself that if it comes to that, he will still be with us and probably a much happier and healthier little boy for it in the end! I hope Zane is hanging in there and things are getting better for him!

    Have a great day! Dana :o)

  6. Hi Nancy... I just found your blog and read your post about getting the feeding tube and wanted to comment. I am a 19 year old college student who has EE and I too use a feeding tube. While it can be extremely difficult to adjust to at first, it has provided me with the energy and health I need to live my life and go to college like any other "normal" young adult. Hope all is well!

  7. Hi Nancy. I hope Zane has gotten better- no more vomiting from the tube. Have things worked out with school?

    Tomorrow is my Tallulah's Birthday. Next weekend will be our first Birthday Party since discovering EE. I don't know why this one thing seems so much harder than the rest, but it's hard to deprive her of birthday cake and ice cream on her birthday. I just blogged a bit about it and about National Eosinophilic Disorder Week and am sitting here at the computer crying while my girls sleep. I guess you and Zane have navigated a number of Birthdays with EE by now. I wish our kids didn't have to go through all of this. Please keep blogging when you feel up to it. It is so nice to feel like there are others out there dealing with all of this and succeeding day to day. I live in a small town and often feel very alone. My best to you and your family.

  8. Hi Nancy, I was reading your earlier post, and was wondering how you came about to discover Zane had EE to begin with. I also noticed you lived in Dubai for sometime. How did you come to have access to elemental formula? Is it readily available in the shops or will I have to order online?

  9. Hi, Lama. The process behind finding out what was wrong with Zane was a long process. It took a year to get a diagnosis. There is some elemental formula available here but only for children under a year old. I order it online and ship it in or bring it in when I come from Europe or the States. I have also had friends bring it in for me. Are you in Dubai, Lama? If so, please do contact me via facebook at Nancy Mahmoud.

  10. Hi Nancy, my son Connor is 2 and was diagnosed when he was only 10 months old. I was so fortunate that we had a Dr. who had experience with EE and when he saw it recognized exactly what to look for. We have been doing food trials for the last year and so far no luck. He is on Elecare which he actually really likes and we have recently given him the splash. Thank you for sharing Zane's story, I feel like noone really understands what it is like to have a child who can't eat anything. It is almost if they think I am exaggerating the severity of his condition. It is really nice to see that there are others who are as scared and worried as I am about their kids, and that I am not over reacting.