Our Story

Friday, March 11, 2011

I'm to my limit and then some

I've blogged a lot about what medical problems Zac has guess what it's more about him. Zac has never taken a bottle ever, he just wouldn't, even lately I've tried pumping and giving it to him with no success. At around 4-5 months we tried feeding him rice cereal and he had no interest in it. At his 6 month visit they said not to be concerned that this is normal. We continued to try different baby foods solids and he had no interest in any. He would randomly break out in hives and sometimes it was as much as daily. At his nine month visit we heard more of the same it's not uncommon just keep trying.

At his 1 year visit he had gained no weight since his 9 month which caused concern, it's called failure to thrive. At that point blood work was taken to run a RAST (a blood allergy test). It came back that he was allergic to milk, eggs, soy, wheat, and peanuts. We were then told to take him to a nutrionist. Who gave us some wonderful ideas and who referred us to an allergist.

We then saw Dr. Taylor (the allergist) who discovered that Zac had an allergy to milk, egg, and tree nuts. And that he only had an intolerance to soy, gluten, and peanuts. Dr. Taylor said although he does have allergies they wouldn't cause him to lose weight and definelty would not have to do with his lack of sleep so he referred us to Louis Mizzel (a gastroenterologist).

Dr. Mizzel scheduled us for an upper GI and a colonoscopy to see if he had eosinophilic esophagitis. When we got the results back we found out that yes he did indeed have it and a pretty bad case. Dr. Mizzel said it wasn't THE worst case he had seen but pretty close. So he was put on a round of steriods and previcid. The round of steriods didn't help his willingness to eat and in fact he was sleeping worse and screaming more which I didn't think was possible.

It's now a few weeks later and Zac is to the point where he won't even let something touch his lips before he starts bawling. Often times he struggles with swallowing his own spit. He was really sick last week and I couldn't get him to take tylenol. He had a fever for 4 days that I couldn't break because I couldn't get enough meds in him.

Zac went into his 15 month well check today and he hasn't gained weight in 6 months. So we are now being faced with the decision of using a feeding tube. The concern with a feeding tube is they aren't mean't to be long term and he will just pull it out, so we would have to keep reinsterting it. So there is talk about putting a tube straight into his stomach. We are also contacting the dysphagia clinic to see if they can help with his complete inability or willingness to swallow.


  1. I found your blog through GSG (so I'm not a TOTAL stranger - eh, sort of). :) That breaks my heart to hear about Zac. I have no knowledge of eosinophilic esophagitis Zac has, but I know about the dysphagia part, which my son has. He is 16 months, we have been attending therapy since he was 6 weeks, and although he still isn't chewing foods yet like a normal toddler would, his swallowing has improved and some of his other mouth issues have gotten better. I'm sure you feel WAY more buried in all of this than even I did, and in the middle of it all it just feels like there is NO. END. IN. SIGHT. But press onward! When you feel like you can't go any more, take one more baby step, and then maybe just one more. :) I will pray for your family and especially little Zac. Keep going girl!


  2. oh that is horrible!
    I don't have children's tylenol in my house, when my babes get sick which isn't too often lucky for us, I use essential oils, I use doterra oils. YOu can rub them on children's feet, I also gave my babe a vinegar bath to break his fever. Good luck- here is oil info but I bet you've heard about them they are big in Utah http://www.doterra.myvoffice.com/sunflowerradiantlove/

  3. When I read your "intro" on GSG blog I noted in my comments about EE (eosinophilic esophagitis) as your son's symptoms are very similar to my daughters. She is 13 months old and will be having the same testing in the next few months for EE.

    I'm sorry that its been so rough for your little man. We did the feeding therapy for our daughter and quit going because it made things worse. Even now she'll only eat a few cookies (YAY progress) and that's about it.

  4. Two of my children have been diagnosed with EE too but they are in their 20's. One is more severe than the other but both had their esophagus stretched so they could swallow more--in fact, it took a couple of times for the esophagus to stay stretched for them but it did help them to be able to eat better. My daughter's esophagus was so closed up that it was a wonder she could swallow anything. She still can't eat alot of foods for fear she will choke. I assume that was looked at by your gastroenterologist?

    My heart goes out to you. It's been such a mystery to me as to how this disease came upon my kids in their late teens and how to cope with it. I can't imagine having to cope with it with a young baby. Good luck in finding answers on how to treat this.

    Also...I am assuming you live in Utah. Is it Dr. Scott Taylor that is your allergist? We went to him too.