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This is a blog for my son. He has a rare auto immune disease that causes his body to attack food like it would a virus making it impossible for him to eat most any foods with out getting very very sick. This is a record of our ups and downs, doctor visits and procedures. Our trial and error life of finding out what foods are safe for our son to eat and eliminating the ones that are not from his life.

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Wednesday, February 29, 2012

weigh in

Yesterday John weighed in at 17lbs 14oz.
That's only half an ounce in a week. He is still staying right on the line of the 3rd percentile curve.
It's not great or even good but it's acceptable which is all I've come to expect anymore. I would love to see him jump up on that chart but until we get some safe foods for him to eat that will not be happening. So for now I am happy just to see him maintaining and not losing.
Come on March 21st!!!

Monday, February 27, 2012

We're in!

We had a great weekend! It was so relaxing and I got to take a ton of great pictures (about 500 of them!)! It was just what we needed. To take some time away and not think about doctors and hospitals and tests. To have fun and live life. I think a lot of the time we get so busy surviving that we forget to LIVE! Don't let that happen. Take a step back and breath every now and again and remember that this is our one life we have to live, so don't just survive, live your life and enjoy it!

John has been eating well and the steroids seem to be working because his vomiting has decreased but we are still experiencing a lot of gagging and coughing a long with the occasional vomiting. I can't understand this because John is solely elemental! He is not being exposed to any allergen that we are aware of food wise. That makes us wonder if he doesn't also have some environmental allergies that are causing him to have EE flair ups. I hope we will get some answers soon.
We got some great news today too! We got into Greenville Children's Hospital to see Dr. Markowitz! We will be going to Greenville SC on the 21st of March. We were expecting a wait time of at least 4 weeks if not longer since we wanted to see Dr. Markowitz (from now on referred to as 'Dr. M.'). We are so thankful that we only have to wait 3 weeks!

Friday, February 24, 2012

Taking a Break

We have decided that since we are playing the waiting game with Greenville Children's Hospital that we would spend the weekend doing something fun and shake things up a bit. Doug came home last night and surprised me by telling me he thought we should just pack up and go to Charleston for the weekend. He knew we needed a break and that I've been dying to break out the new photography gear he got for me for Valentines Day.

John's weight this week was 17 lbs and 13.5oz

Have a great weekend! I know we will!!

Friday, February 17, 2012

New Direction

So much has happened this week! Where to start....

Last post I had said how we weren't 100% on board with re-introducing rice, but that I felt like I would need to start trusting John's doctors at some point. Well I'm going to start listening to my gut from now on!!!
John has been having severe symptoms since THE DAY we started rice cereal. I called his GI Doctor to notify him of this and he advised me to reduce the amount he was getting and if that didn't help to cut it out all together. Well I was only giving John one serving everyday and some days none at all, so I just cut it out all together.
Then I bought a different brand of PolyVisol vitamin because I couldn't find the Enfamil brand at our store. John started to throw up his first bottle every morning! I looked at the ingredients and the ONLY difference between the two brands is 'Oil of Orange'!! I threw that out and went in search of the Enfamil brand. This means that there is a pretty good chance that John is also allergic to citrus or maybe just oranges.
John is still having severe symptoms. Even after removing the rice and orange oil. The GI Doctor called in another round of steroids. (This is the same Doctor that tells us every time he actually sees us that he does not like to prescribe steroids and only uses them as a last resort and has now called them in twice in two months over the phone with out even looking at our son)

Yesterday, the day I was supposed to pick up said steroids, John is throwing up again and coughing, gagging, the usual EoE symptoms for him, when I notice that his lips look blue! He has not stopped breathing and is acting normal, aside from the gagging/coughing. I watched him for a bit and his lips turned back to pink but I was worried so I called Doug to come home. I called his pediatrician and they said to come in. While waiting for Doug to get home with the car it happened again after a coughing/gagging episode. I called back the pediatrician and told them to cancel our appointment, that we were just going to head to the ER. So Doug get's home and off we go. They did some xrays of his chest and naturally it doesnt happen while we were there. He didn't even gag or throw up after eating!!! They diagnosed him with 'reactive airway disease' which pretty much means he has inflamed airways. That could be caused by a cold, bronchitis, the flu, or just excess coughing due to reflux or excessive vomiting. So we took John home with advice to bring him back if his lips turned blue again and his tongue did too, that if it was just his lips he was okay.
That night I had a meeting set up with another local Mom who's eight year old son has EoE. The longer I talked about our experience, especially lately with the re-introduction of rice before a clear scope, the more she got agitated and upset! She said she has never met a family dealing with EoE who has been happy with their treatment with this GI Doctor. She strongly recommended we  get John in at Cincinnati or Greenville, where they have more experience with Eosinophilic Esophagitus. She also confirmed our ideas that because John is allergic to corn that he could also react to the corn starch in the 'hypoallergenic' Nutra and Duocal. Something I have questioned the Nutritionalist about over and over again. It's rare, but it is possible for a person like John to have a reaction to the whole food rather than just the protein of that particular food. The thing with Nutra and Duocal is that the proteins are already processed out of the corn starch before the person ingests it. John may be one of those rare cases who reacts anyway.

We decided that doing this scope on the 27th is pointless. We would be putting John under anesthesia for no good reason. With out the steroids we would know it would come back positive because he is still having symptoms, with the steroids we know it would come back clear because he just had a round of steroids!! Why do it then??
I also had to cancel his speech therapy session because we no longer have the rice and we are stopping the Nutra too so that the steroids we are giving him now don't end up being a wasted effort too. This means we are back to an elemental formula diet.
I am so frustrated that we have been set back probably another three months because this Doctor advised us to start rice too soon! The Doctors at CCH (Cincinnati Children's Hospital) do not allow their patients that fail corn to have anything with corn starch in it. If we had been there or with a competent Doctor here we would not have been given Nutra or Duocal after we found out that John is allergic to corn! I hope that GCH (Greenville Children's Hospital) can get us in quickly. I've been told they are comparable to CCH.
I have called his pediatrician to get a referral to GCH because right now we can not afford to go to Cincinnati and there is an 8-12 week wait to get in there.

Now, here is a picture from John's 14 month photo shoot!

Monday, February 13, 2012


John is going to have his second endoscopy on the 27th. The first scope he had was to diagnose the EE. Now every three months or so we will have another scope to check on the disease. As of now that is the only way to check on the count of eosinophils is to do a biopsy of his esophagus. The only way to know for sure if we have found a safe food for John is to check the count of eosinophils. If there arent any eosinophils built up then that means that whatever food we were trialing are safe foods. If there is a build up, then we have failed that particular food(s).
I don't know right now what the next step is if we fail a food. I think we can either just go back elemental and wait it out, or we might be able to rush things a long a little bit by doing another round of steroids. Once we are symptom free again we can start trialing again. If he is all clear then we can add another food or two. And we will continue with this routine over and over .....and over.
With the endoscopy they will put him to sleep with general anesthesia, place a tube with a camera on it down his throat and take a sample from his eosphagus to do a biopsy on. 
Last time they did this he started to wake up before he should have, we werent in the room like we normally would have been so he got scared and fought everything and everyone. It was heart wrenching. As soon as they opened the doors to the long hall way that is the recovery area I could hear him screaming and knew with out a doubt that it was my baby making that noise and that he needed me. A nurse was holding him and rocking him, trying to calm him down. I took him from her and he fought me too. He couldnt open his eyes, he couldnt make his body work, because he was still half asleep but he was fighting it. He gushed blood when they took his iv out too! After about 20 minutes of him throwing up and pushing me away while we both cried he finally fell asleep. We had to stay there for 20 minutes with out him throwing up before we could leave. I carried him all the way to the car and he slept while I put him in his car seat and all the way home. By the time we got home he was fine. A little loopy and wobbly but his normal happy self. By the next day it was like it never happened. 
Obviously this is not something I am looking forward to doing every three months! Everyone kept telling me how this wasn't normal, he shouldnt have been reacting that way, he was okay! It shouldn't happen that way again but who knows? Maybe his body just doesnt react well to the anesthesia. I guess we will see in a couple of weeks. Maybe one day they will come up with a better way to check his eosinphil count. Until then this is what we have to do. It sucks, but there ya go. I'm really concerned about this particular scope because we already introduced rice before this scope and he's been having a lot more symptoms but we won't know if any build up is from the rice alone or if we never got rid of them all in the first place.  

Ready for the good news?
Me too
John has always had some sensory and texture issues plus the oral aversion. Meaning, he wouldnt touch food or anything wet, cold, gooey or feed himself in anyway. He doesn't pick up things and put them in his mouth. Now that we are doing the Nutra I've been putting a small spoon full on his high chair tray and giving him the opportunity to play with it and feed himself. We are making progress! He has started to put his fingers in his mouth and lick the Nutra off his hands! I am beyond excited by this improvement that we've made even before his first therapy session!
Also! John is starting to walk!!! EEeek!! He took two steps today with out my support. He doesn't know he did it but he did! 
Speech therapy is on Thursday the 23rd and we will also see the Nutritionalist and get another weight check. 

Thursday, February 2, 2012

blood work and weigh in

John's appointment with the GI Specialist was yesterday and while he really didn't tell us anything new he was able to give us the results of the blood work the allergist did to re-test the negative results from the prick test.
As we suspected, even though it didn't show up on the prick test, John is also allergic to soy. So that's six foods on the 'no go' list. Milk, Soy, Wheat, Eggs, Beef, and Corn.
That leaves A LOT of foods to chose from when starting our food trials and tells us know what to save for the end too because with EoE he might react to one food this month and not react at all the next month. So there is a small chance I suppose, from what I've read, that in a few years one or more of those six foods might be acceptable. But also one or more of his 'safe' foods may no longer be safe. It goes both ways. It's not predictable like normal food allergies and his body doesn't react to the offending foods the same way either.
The GI Specialist suggested that we introduce rice cereal back into his diet before his scope which surprised me and Doug. I plan on talking to the nutritionalist about this before we do it but I guess at some point, regardless of how John's original pediatrician was, I'm going to have to learn to trust his Doctors.
We are scheduling another scope for some time this month and John will get one every three months while we do food trials. I will write another post on food trials, I know I said that last time!
So, the game plan now is at least 8 ounces of 1.5 cal/ml formula, at least 14 ounces of 1 cal/ml formula, 1 feeding of Nutra, and one of rice cereal every day. Got to chunk that baby up!
And now the big news!!
Yesterday John weighed in at ..........

18.2 lbs !!

After his scope results come back all clear (cross fingers) then we will talk to the nutritionalist and the speech therapist and get going on the food trials and his therapy!