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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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Monday, November 10, 2014

Where has the time gone?

I have fallen behind in my updates and for that I'm terribly sorry. I have no excuses, I just haven't made the time to sit down and write out what's been going on! I still cannot believe I never came back here and posted the results of John's scope and since then he's had another!! 
Let me backtrack a little bit...

We were trialing a combination of three foods which I nicknamed "zuspinoa" which is a mash-up of zucchini, spinach, and quinoa. John was tolerating eating it and not showing any signs of a flare. I called and set up an appointment with John's GI doctor in Atlanta to do another endoscopy to confirm that zuspinoa was safe. Before the scope we decided to switch pharmacies where we get John's reflux medicine compounded. I had been driving all the way into Augusta (30-45mins) to pick up his medicine every month. I found a compounding pharmacy across the street from the clinic where John gets therapy and had his prescription transferred with all the instructions on how they made it to make sure that they didn't change anything up on us and give us anything that might cause a flare up. I also went in to talk to the pharmacist and explain John's disease and known allergens, and our need to keep all dyes and flavors out of his medicine. I assured him that John has been taking this medicine for most of his life and could tolerate the natural flavor without adding anything to make it "taste better". The next day he called to tell me that the kit they ordered to compound his medicine had flavoring in it. I knew exactly what kit he was talking about because we had tried it from CVS and John reacted to it. I explained again that he couldn't have those and that he needed to just mix it the way the other pharmacy did, without the pre made kit. He told me he could "figure it out". I should have known then that this wasn't going to work and gone back to the pharmacy in Augusta but I didnt.
I go to pick up the new medicine and it's much milkier than the stuff we used to get. I gave some to John and you could tell by his reaction that it tasted different as well. Again, I should have known then that this wasn't going to work.

We went to Atlanta for the scope and John did GREAT! He didn't cry at all and was so brave. His esophagus looked really good too! That's always a good sign but not really a good indicator of what the biopsy results will be.

Two days after John's scope he started preschool. This was something that I really struggled with for a long time. After many IEP meetings and discussions I finally felt like John would be safe at school. We had a plan for him to have his formula at school and for him to be kept away from food without feeling too excluded (I hoped). John LOVED school!! He was drinking plenty while he was there and coming home asking when he could go back. He goes three days a week all day. He still has private therapy so he couldn't go 5 days a week like they wanted him to.

John's second or third day at school he threw up. I tried not to freak out and brushed it off as him just drinking too much too fast in his excitement of being at school and wanting to move on to the next thing.
We decided that since his pictures looked good and he hadn't shown any signs of a flare to go ahead and start trialing pumpkin. I found a spinach pumpkin blend and John really seemed to like it.
Over the weekend John threw up twice.

I got a phone call from Dr L himself a week after the scope. In my experience, the doctor calling is never with good news. 
John had 95 eos. He had failed this food trial. 
We were blown away. Even Dr. L was shocked because his pictures looked so good and John still hadn't had ANY symptoms at all prior to the scope. No reflux, no behavioral changes, and no vomiting whatsoever. All the symptoms started AFTER the scope. Now we had to figure out if it was the new medicine, school, or zuspinoa. I highly suspected the medicine and possibly school too. I didn't, and still dont, want to believe that it's the zuspinoa. We switched back to our old pharmacy and stopped giving John the new reflux meds. We pulled zuspinoa and pumpkin too. Now we had to wait, a whole month, before we could scope again.
John continued to throw up at school and at home. It was happening more frequently and more severely each time. The school would make me pick up him every time he threw up even though they knew he didn't have a fever and I explained that he wasn't contagious. He would be so upset every time he had to leave school early. Most days he would throw up before 9am so he missed a lot of the day at school. 
Now that we had pulled all the new foods and medicine and he was still seeming to get worse I could only think it had to be something at school. How was I going to figure this out? Should I pull him out of school? Get him homebound? Get a shadow for him at school? 
We starting mixing his formula at 1/4 strength because in the past that has helped him keep more down. Once he'd kept that down for a few days I bumped him up to 1/2 and then full strength. I normally send "extra strength" formula to school. Mixed at 1.5 calories per milliliter. He was tolerating regular strength but when I went back to 1.5 cal he would throw up again. I hoped I'd found the culprit for the vomiting!! 
We had our next scope set up and were crossing our fingers for low numbers but didn't get our hopes up too high. Given John's symptoms we and Dr. L expected to have another bad scope.

6 weeks after the last scope we scoped John again.

pre-endoscopy number 8
Dr. L talked to us while John was in recovery about what options we had if his biopsy came back with high counts of eos. The plan was to increase his steroid dose and then sort of start ignoring the numbers. The high counts of eos weren't causing any physical damage to John's esophagus and if we could control any symptoms he had and he wasn't in any pain there didn't seem to be a point in limiting his diet so strictly.
This was a HUGE decision. Not restricting John's diet so severely could drastically improve John's quality of life. We would have an easier time finding a food for feeding therapy to bridge the gap between baby food and solid food! John could possibly have a birthday cake for his 4th birthday! 
When we got home from Atlanta we started researching. Looking for foods we could introduce in therapy. Daydreaming about our son eating cake for the first time in his life. 
And waiting for the biopsy results. 

John hadn't been throwing up since I started only giving him regular strength formula. John's feeding therapist and I were fantasizing about all the doors that could be open now for therapy. 

We took John to the hospital for their food free festival. John was dressed as The Doctor. The 11th Doctor to be exact. 

He had SO much fun. He'd never been trick or treating before so it took him a few times to figure out that he could keep what he picked from EVERY person and didn't have to trade one for another. He came home with a ton of little toys and fun things. We also gave him a Halloween bucket full of fun little non food things sort of like an Easter basket. We skipped town on Halloween morning and escaped to Gatlinburg for the weekend to blow off steam and have some family time. We had a great time even though the park was closed due to a snow storm until the last day of our weekend. We were able to get to Cade's Cove from the other side of the park before we had to head home.

When we got home I started to get anxious over why we hadn't heard from GI about John's biopsy results. It had been over a week and we normally would have heard by then. I finally gave up and decided to call them. Turns out they'd called me a week before and had my old cell phone number!
John has ZERO eosinophils!!!

The plan now is to keep all his medicines the same and continue to trial as usual. One food at a time, 2-4 foods between scopes. We are starting with pumpkin because that's what John wants. Next will be rice rusks in the hopes that even if they aren't safe, he'll be able to tolerate them long enough to transition in feeding therapy to eating age appropriate foods.
These last two scopes were a roller coaster but things seem to be getting back on track. 
John is super close in therapy to making that jump to solid food and he's loving school.
Now it's time to start planning a birthday party!!!
Can't believe he's almost 4!

Hopefully I won't get so far behind again!
Thanks for reading.

Saturday, July 19, 2014

Got Peaches?

It's been almost a week since we started the "zuspinoa" trial, and so far, we have not noticed any symptoms to make us question if these three new foods are causing any problems. I plan to call John's GI doctor on Monday to schedule a scope, which will probably be 2-4 weeks out. That will give us plenty of time to ensure that his body is aware of the new food on board and for his immune system to attack it if it's going to.
John is still willingly taking at least five bites a day, but it's becoming clear that this isn't, and probably won't be, one of his favorite foods. That's okay though because just having quinoa as a safe foods brings a lot of opportunities for some variety in John's diet. 

Speaking of favorite foods, John is eating so many jars of peaches a day that we are having trouble keeping them stocked up in our pantry. He's eating 5-10 jars a day! We are having to rotate which grocery stores we go to because we buy every single jar they have, every other day. We go to two different Krogers, two different Bi-Lo's, two different Publix, and sometimes two different Wal-Marts. Most of the time we can't get more than 10-12 jars at a time. Sometimes we can only find 2-6 jars.
There have been days when I've had to go to multiple stores in one day just to scrape together 6 jars, hence the rotation of stores. We have to give them time to restock the shelves before we wipe them out again.
I totally hit the jackpot at Kroger yesterday though, and came home with 29 jars of peaches. 

I feel so silly sometimes, checking out with that many jars of peaches, especially when that's all I'm buying, but it's usually a great time to spread some awareness with the cashier and the other customers in line with me. I also feel guilty buying up, what feels like, the entire stock of Beechnut peaches in the city every week. Then I remind myself that not many kids are limited by brand like mine is. 

Hopefully this baby food stage is coming to an end for us. Feeding therapy is going great and John's making some very big strides towards eating age appropriate textures. I really think going to school and seeing other kids eating will help a lot, even if it's going to make fitting in feeding therapy difficult. 

Thursday, July 10, 2014


Zuspinoa. Yes I made up that word. It's pronounced "Zoo-spin-wah"
It's a made up word for the new food John is trialing!! YES! We are trialing again and three foods at once this time!
Zucchini, Spinach, Quinoa. 
We stopped trialing food so that John could focus on feeding therapy without the added stress of trying new foods. Trials were becoming stressful because we had exhausted Beech Nut's stage two baby foods and all the stage three had combos with ingredients that we knew or suspected to be unsafe for John. Making my own baby food wasn't working out so well sensory wise for John either.
I had been casually checking out the baby food aisle to see if they'd come up with anything new we could try and then one day, there it was.

So far the trial has been going better than I thought it would. We started on Monday with five bites and I was worried he would totally refuse to try but he was very willing! He said "I like it!" after the first bite and willingly ate four more. The next day he had about 5 bites and asked to be all done, but on Wednesday he ate half a jar! Today five bites was a big deal and I think that was because we had just gotten home from a very intense feeding therapy session. So far we've not had any new symptoms!
He has been coughing a lot after eating which is a concern but he was doing that before we started the trial so we aren't attributing it to the new food.
His feeding therapist wants another swallow study done to see if he isn't having some problems there that might be causing some food to go down the wrong way and make him cough like that.

John now has feeding/speech, occupational, and physical therapy at one place. He goes for two hours twice a week. He's improving in all three areas with feeding being the most progress!

In other news, John is going to start 3K in the fall! He's going to be going full time with an extensive IEP. I was really really hesitant and worried about sending him to school but after meeting with the school board after his evaluation and seeing the IEP they made up for him I feel a lot more comfortable. Now to decide that I am going to do with all that free time.

Monday, February 3, 2014

Shifting Focus

taken by the talented Ross Goodman Photography
To start off, John had his sixth endoscopy on Monday, January 27th. He was so brave when it was time for him to leave us and go back with the anesthesiologist. I'm so thankful that they do not do endoscopies in the hospital here and the clinic is small so that John is never very far away from us. The staff is sweet and patient. Like I said, the anesthesiologist takes John back herself every time instead of a different nurse coming to get him every time. After being gone for about 20 minutes, Dr. L came out and told us that John's esophagus looked really good and sat down in the waiting room to talk to us about next steps. He sat there and talked to us until John was awake and ready to see us. 

John waiting to see Dr. L before his sixth scope.

We were scoping for peaches and grape seed oil this time. We had originally planned to scope between every 4 foods to cut down on the frequency in which we put John under sedation. We were not anticipating the difficulties we would have in determining which reactions were EoE and which ones were due to John making himself sick because he didn't like the change. We don't want to expose John to an offending food for long periods of time if he's having any sort of negative reaction. Obviously if it's just a sensory issue causing the reaction we can deal with that, but if it's an EoE reaction that would require removing the food. It's all extremely frustrating and why it's been nearly a year since we've scoped and only have TWO foods.
After a year it was time to scope again with whatever foods we had, even if it was only two. There was always the possibility that John was rejecting the other trials because the peaches were making him sick. We had to know what was going on in his esophagus before we moved forward.

Dr. L's office called me a few days ago to let me know that John's biopsy came back 100% normal! 
That means ZERO eosinophils! 
That means that peaches and grape seed oil is SAFE!
That means we have SIX SAFE FOODS!

Which brings me to the plan that we've decided on with Dr. L as far as moving forward: We have decided that with these six foods, John can have a pretty normal life. While we've been trying to focus on feeding therapy while doing food trials there was always the concern that John couldn't tolerate age appropriate textures due to restrictions in his throat from all the foods we had been trialing over the last year. Now that we know that there is no swelling or irritation from an EoE flare, we can confidently say that his avoidance of textures is a sensory issue and/or a learned behavior. Now that we know this, we have chosen to stop food trials and focus on feeding therapy. We are not going to introduce any new foods that could cause a flare and always causes stress. It's time to buckle down, dig in, and get John to where he can comfortably eat the foods we know are safe. Getting John to eat something other than baby food would mean easier food trials in the future, more calories, and a more normal life for all of us. 

We've come to a point where we feel like focusing on feeding therapy and John eating these six safe foods is more important than adding more foods to his list of safe foods. It was a hard decision to make and it's something we've been talking about for close to a year.
We have an amazing feeding therapist on board who knows what our goals are and is working really hard with John, here in our home, to reach them.

I am so very proud of my little man. He is so brave and always unbelievably happy. No matter what life throws at him he just keeps on smiling. He makes me laugh until my sides hurt and amazes me every single day. I cannot imagine my life without him or imagine him being any different. I'm thankful for him each and every day and wonder what I ever did to deserve him. I hope one day he knows how much he is loved and admired by me, the one lucky enough to be his Mommy.