Sunday, July 30, 2017

The G Word

This has been a crazy, crazy time in our family. We have found new answers to old problems and our world has kind of exploded. But, before I get into all of that, let me back up to the beginning. WAY BACK ...

Our older son stopped feeling hunger about 6 1/2 years ago. It started slowly with just a lessening of food at each meal. Then came the "I feel sick in my neck" comments. It got worse until the obvious thing happened, he ended up with a feeding tube.

We tried feeding therapy and he graduated. I was told the sensory side of his issue was taken care of, but you can't fix "hunger" via therapy. I didn't understand why our son didn't care if he ate, felt very little hunger, and refluxed so much.

As we were moving through this time the exact same thing happened to our younger son. That was it. This made no sense. One day he ate a full meal, the next he didn't. What was going on? I started to research even more. Nothing. I found nothing that really fully explained their issues.

Our GI ran the tests she should. We had scopes, swallow studies, x-rays, gastric emptying scans, the works. Everything was clear for the most part. The things that weren't didn't cause this issue. We had almost resigned ourselves to never knowing why our sons didn't eat.


Then one day, about 7 1/2 weeks ago, our older son got sick. We ate at a restaurant, he had a milkshake, he got food poisoning. Oh it was fast and bad. That lasted about 2 days. But something odd happened. He stopped being able to keep food down. Yes, he had thrown up with the food poisoning, but this new throwing up was different than that. I couldn't explain it, but it was very different. I called our GI after 5 days of it and said we needed to be seen. We came in, she took a look at him, asked lots of questions, and said she felt he had "post infectious gastroparesis".

OK, let's stop there. What does this mean?

Post-infectious is pretty simple. It simply means after an infection. It can also come with non-infection issues, but means it's tied to a cause (like our son's food poisoning) and is very often short lived (meaning acute, not chronic).

Gastroparesis that's a bit harder. Gastroparesis is literally paralysis of the stomach. It is a disease where your stomach doesn't empty after having a meal. This can be for only a few hours, or it can be days that the food sits there. Each person is different and sometimes each meal is different.

Now that we understand what our GI just said, let's keep going. She decided to put him on a motility medication to help the food move from his stomach into his intestines in a more normal manner. She said we would come back in 6-8 weeks and see where we were. Great. See ya then, doc!

Except I am not one to just "see ya then, doc" and forget about it. I came home and did some research. Since this would be a short term gig, I didn't put a lot of time into it, but I wanted to know more. Wow. I started to read about Gastroparesis and my mind was blown. This sounded EXACTLY like our son. It sounded like his issues from day 1. I remember his huge belly, his early satiety, his reflux with every meal, his inability to tolerate fatty meals or lots of fiber, the list goes on.

As we watched the medication work like near magic, my husband and I started to have discussions. I asked one day, "what if this isn't a new disease? What if this is what he's always had and this food poisoning just made it worse so we could find it?" He said it sounded logical. We couldn't deny what we were seeing with the meds.

I emailed our GI and asked her if our thoughts could be right. I figured she would kindly tell me I was nuts and move on. I mean we had a gastric emptying scan (not done to standard I now know and not a great indicator in children). She didn't tell me I had gone off the deep end. She said she would actually consider it after we saw what our son did while on the trial of medication.

I researched even more and learned about lifestyle and diet changes that are common with GP. We began to implement those on our own. They were simple enough that we didn't need medical input. He just got better with each thing we changed.

We then decided to go really rogue and approach her about our younger son since his symptoms were so similar and the outcome the same (feeding tube due to early satiety, reflux, etc). We asked if we could simply do a trial of the medication before we came back in to see her. She quickly agreed that it made sense with his symptoms and we started him that day on medication.

We finally had our follow up appointment and spent a lot of time telling her what we saw, what changes had happened, etc. She couldn't deny our older son's weight gain either. He grew taller and gained weight in that trial period because he was finally actually digesting and using his food. It was shocking to see. Our younger son weighed more than he ever had before. Getting weight on him had been so hard.

We walked out with a new label, one that fits their issues so well. Our sons have Gastroparesis. This is not post-infectious like we first thought. It's simply Gastroparesis that was worsened during a health issue which enabled us to find it.

Are we happy our sons have this issue? No. Absolutely not. It's not an easy one to deal with. I am learning new things about how to help them each week. BUT, and it's a big one, they had SOMETHING. Not having a name didn't make that something go away. It just made it nearly impossible to treat and really hard on us as we saw our kids health doing poorly. Knowing a name allows us to say "aha, there it is, this is why we were seeing this". In this case it also allowed us some treatment options we didn't have when we didn't know what was causing it.

There is no cure for Gastroparesis ... yet. Medical science is learning new things all the time. The natural side of medicine is always growing in knowledge. I hope one day there is a cure.

But, until then, we are treating our sons and they are doing so well. No, they are not fully eating by mouth. Not even close. But the medication isn't an appetite stimulant. They weren't hungry because their bellies were always full of food, even hours after eating. But, some of the changes we have seen are incredible. Instead of giving our older son a tiny bit of blended food and him getting nauseated or refluxing, he can have a bolus of an entire meal comfortably. Instead of having to give him one meal over many hours via a pump with his tube, he's having a meal in 30 minutes via a syringe in his tube. Instead of our younger son saying, after only 1/4 or less of his tube feeding, "Momma, please stop, I am so full. I feel like I am going to be sick" he's feeding himself his blends via tube and finishing the whole meal.

We are in a really good place right now. But, I know with GP this can all change. We can see worsening of symptoms, changes in symptoms, meds can stop working and you need something different, etc. We have already seen that with our younger son. We had to add a bedtime dose most of the time for him because he was massively urping up after laying down, no matter how early we had eaten. Our GI said this isn't uncommon and to add that extra dose to help him at night time. Worked like a charm.

We did do some diet changes. For example, all carbonated drinks are gone. ALL of them. High fat foods are gone (red meats are the hardest, our older son doesn't do well with them. That made no sense to me before this diagnosis). We spread our sons fats out during the day. We also walk after a meal, don't lay down for a good hour after eating, the list goes on.

So this is life now. It's always an adventure. But we are so happy to have another piece of the puzzle that helps us understand our kids.


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