Update on Gav's EOE

If you haven't read my previous updates on Gav, he has a condition called Eosinophilic Esophagitis. It's a food allergy that does not immediately present itself, but causes a delayed reaction.  We found out about this due to him swallowing a piece of plastic that he was chewing on, and it getting stuck in his esophagus.

The Dr. put him on a very strict diet and Protonix after that event. No wheat, no soy, no dairy, no corn, no peanuts, and no sesame. We had him scoped again back in November and the Dr. gave us great news that it had significantly improved with diet restrictions. This was very comforting because had it gotten worse, then we would have had to restrict his diet even more. I'm sure you can understand how hard it is for a child to drastically change their diet. I mean this kid loved PB&J sandwiches and we had to cut them out completely! After the scope, the Dr. said that he could have everything in small amounts or spread out except dairy and wheat. This did make it a bit easier to feed him. We went through a period that I wasn't even sure what to feed him!

After the visit today, the Dr. did not think that we needed to scope him again anytime soon! He was super excited to see that Gav has not had any issues with food getting stuck at all since the diet changes. He is going to keep him on the meds for another 6 months and we will decide to go from there. Gav does have a lot of acid reflux, so we will need to see if that improves.

It has not been easy trying to make sure that he follows the diet to a T. I mean he's 11 and sometimes he doesn't pay attention to ALL of the ingredients. I have to constantly check ingredients because sometimes foods contain things like wheat and dairy, and you would never even think about it. Although it can be a struggle sometimes, it's not the end of the world. At the end of the day, Gav can have any kind of fruit, vegetable, and meat he wants. He's just picky! Thank goodness he loves apples because for awhile that's about all he would snack on! We have been able to find great substitutes for treats such as coconut milk ice cream. We have also found that Lara Bars are perfect for him. They are also healthy, so I don't mind him eating them. Finding things he likes has become a little easier now that we've been dealing with this for awhile, and have learned a few things about it.

So, we go back in six months and we will update then. I know that if he wants to add in foods a little at a time, the Dr will scope him to see how he reacts to each. It may be something we consider later on. It just depends on how things go in six months.

Thanks for all of the prayers!

Gavin's 2nd Scope was today..

If you recall about 2 months ago, my 11 year old son, Gavin, was diagnosed with a condition called Eoe. This is caused by food allergies that end up attacking his esophagus. He was having symptoms of food becoming "stuck" in his esophagus, but we had always chalked it up to him not chewing properly. The actual problem was that he had a build up in his esophagus that was causing his food to get stuck. The doctor put him on a strict diet since he was allergic to wheat, soy, dairy, sesame, peanuts, and corn. He also put him on daily Protonix. It hasn't been easy for Gav because he had to give up a lot of the foods that he loves, but we have found some great things to use as a replacement.

Today he went back for his 2nd scope, and he did very well. The doctor said that his esophagus is moving in the right direction, and that it looks better. He also took some biopsies to see what the number of eosinophils is now compared to last time. He explained to us that Gavin's allergic reaction to things isn't immediate. It takes about 3 to 5 days for him to react in his esophagus. So, in order to keep this in check we have to continue the strict diet, and medication. If he doesn't eat correctly, then he will get the build up, and have to have his esophagus stretched. This is definitely something that we are trying to avoid.

So, we are going to keep on with what we are doing, and keep praying that the number of eosinophils continues to go down. We will know those results in a couple of weeks.

Our New Journey ~ Gavin and Eosinophilic Esophagitis

If you remember a little while back, I posted that Gavin had been in the hospital because he swallowed a piece of a toy gun, and that while they were in there, they found out he had a disorder in his esophagus. This past week we went to the Dr. and found out exactly what it is. Eosinophilic Esophagitis, or Eoe. It's a fairly new disease that they have found that affects the esophagus due to food allergies.

While he was in the hospital, they did some biopsies of his esophagus and also ran allergy testing. We found out he is allergic to milk, soy, wheat, corn, peanuts, and sesame. What happens is when he eats those things, his body fights it and he builds up white blood cells in his esophagus called eosinophils. This is what has been causing his food to get stuck. A lot of times this is passed off as not chewing well. That is exactly what I told Gav for so long.

So, we are on a new journey with food allergies, and he has to be on a pretty strict diet and acid blockers. The funny thing about it is when he was born, he seemed to have allergies from the start. When I switched him over to formula when I couldn't keep up with breast milk, he broke out in hives all over his little body. They had to give him an epi shot at the hospital to counteract the reaction. From here they switched him to soy formula. I never gave him milk again, unless it was spread out in a cake or something like that because that's what they told me to do. Who knew the entire time, I was giving him something that he was also allergic to. About 2 years ago, we switched his milk to almond milk, but I still gave it to him spread out.

When he was about 7 we had allergy testing done, and they told me he was absolutely NOT allergic to milk, and he really didn't have any food allergies because they were mainly environmental.  I am not sure if the difference showed because this was a blood test and that was the skin test or what, but the recent blood tests assured us he was very allergic to dairy.

I have already had people say, well he has never had any kind of reaction before (other than when he was a baby) so I don't understand why you're being so strict on his diet. Well, because his reaction isn't like a typical allergic reaction. His is on the inside of his body, and yes he HAS been having a reaction all of this time. It's like his body thinks that the food is attacking him so it attacks back. A vicious cycle. That's the reason his food gets stuck at times. The only way to ensure that his body can heal is to completely eliminate his allergens and keep him on the acid blockers.

Let me tell you, this isn't easy for anyone, but to an 11 year old boy it's pretty devastating. He has to have gluten free, dairy free, soy free, peanut free, and sesame free foods. He's allergic to corn, but the Dr. said he could have that in small amounts. I'm still trying to cut it as much as I can, so that he can be healed. Go take a look at labels and the majority has at least one of those foods in there. We try to have a pretty healthy diet, but of course he's the picky one who doesn't like salad, or even many veggies. Eating out will be a challenge...simple cooking can be a challenge these days. I am blessed to have a grocery store here with a large isle full of allergy free foods, even if they are completely outrageously priced, so I can still make him some of his favorites like pizza (no cheese) and pancakes with maple syrup.

We are really going to try and keep his diet as close to whole foods as we can. I don't want this to get progressively worse as he gets older. I have been able to find some great groups on Facebook that have helped me understand this confusing disease a little bit more. I feel bad for him because he feels like this is just something he has to deal with for the rest of his life. They say don't let these things consume you, but this is my child's food and his health. I will always let that consume me, because if I don't help him live with this, then who will? Of course it could always be worse. There are so many kids that have to deal with a lot more than this.

I will keep you posted on how this goes. He's been almost completely food allergen free for just about a week, and we go back for another scope on November 14th. Praying we can see a difference! If not, the diet gets restricted even more.

I hope everyone has a great week coming up!

Tasha