Thursday, January 2, 2014

Adventures in Celiac

In July 2013, I took Ethan to his doctor because his stomach was distended and he had a "hard-as-a-rock" spot on the lower right side. He was complaining of pain and acted really uncomfortable. Naturally, by the time we arrived, his stomach was back to normal. She said to give him some Miralax to help with constipation. I was skeptical because he has a pretty regular schedule, but nonetheless, I do trust my doctor and didn't want to do anything more invasive like send him for x-rays to confirm.

Move along a few weeks. Ethan experienced a sudden fever and headache. I gave him Tylenol and within two hours, both symptoms were gone. Ethan later complained of pain around his anus, which was red. Ethan threw up twice at school and was sent home. Dylan tested positive for strep right before this happened, so I took Ethan in as well. He, too, tested positive for strep. Apparently, strep can manifest in a variety of ways, so it COULD explain all the symptoms.

Fast forward a few more weeks. Ethan had a bout of tummy issues at school and was sent home. When I picked him up, he was obviously fine. He most certainly was not sick and did not have any more bouts, but because he was sent home, he had to stay home for 24 hours.

Fast forward a few more weeks. Ethan was again sent home for tummy issues. I took him to the doctor, but I couldn't get in with his doctor because she was booked up. The doctor we saw basically blew me off as an over reactive parent that brought my child in for two bouts of tummy issues. Um. No.

Fast forward again. I took Ethan to urgent care because he was complaining about his butt hurting again and was pretty uncomfortable. It was red, which is how Dylan's strep presented, so I wanted to make sure we started antibiotics over the weekend if he had strep. I'd been out so much from work between the two boys and didn't need a call to pick him up mid-week. The on-call doctor refused to do a strep test because he didn't think that was the problem. He gave me a prescription for some cream, which I never filled because that wasn't the problem.

Fast forward yet again. Ethan came home with bouts of tummy issues again. I took him to the doctor again because I knew, I just KNEW, this wasn't normal. He was complaining about his tummy hurting that morning and his bottom. When I picked him up, he was fine. I explained all the symptoms and said I wanted to know what was going on. She (again not my doctor) said there were a lot of viruses going around. I said, "But he's not sick. You can see he's not sick." She looked at his bottom and diagnosed a fissure that she attributed to the diarrhea. I explained that his bottom complaints happened BEFORE the episodes. I explained how many times I had been in. I told her all the symptoms. I said, "I didn't just bring my kid in for two bouts of diarrhea. I know kids catch viruses. I wouldn't bring him in for that!" She blew me off. When I asked, "Can you explain all the other things?" She said, "Kids get sick." I left angry with a perfectly UNsick child.

Fast forward one more time. Ethan had yet another bout at school and was sent home. At this point, I had enough. I was leaving work yet again and had been home with a feverish baby just a week earlier. A job will only take so much before it starts reflecting poorly. And I knew that Ethan would be FINE when I got there. And he was. Perfectly. Fine. So I tried to get him in with HIS doctor, but she was out of the office. Luckily, so luckily, her nurse practitioner was in. I love her as well. She came to us from the Children's Hospital in Little Rock. One of the best. She agreed--finally someone agreed with me--that these things weren't normal and shouldn't be happening with such frequency. She ordered a CBC panel and more blood tests that would look for things like food allergies and Celiac Disease. She ordered stool sample tests, which is the most disgusting thing I've ever had to do!

About a week after the blood test, we got the news that Ethan's test suggested Celiac Disease and we would have to go to St. Louis to see a specialist. Alas, we did go, and his numbers are high. Tomorrow, he will undergo an endoscopy to determine a more accurate diagnosis, but all signs point to celiac. She said the bouts are likely due to mal absorption, meaning his body isn't getting what it needs from the foods he's eating. We'll have a 100% answer soon. After all this time, I have mixed emotions. While I don't want Ethan to have a disease that he'll have to deal with for his entire life, I am also relieved that we're finally getting some answers. And I am ever more confident in the knowledge that mothers really DO know when something isn't right and that as mothers, we must fight continually for our children. We must be persistent even when people make us feel ignorant and small and over reactive.

I don't know yet where this new journey will lead us, but at least I know there will be a path. And while I am beside myself nervous over Ethan going under tomorrow morning, I also am anxious to get the results and begin moving forward!

2 comments:

  1. Prayers sent for Ethan and you . Props to you for not giving up, I'm so happy you are getting some answers I'm a firm believer that especially with certain kids diet and stomach issues can cause a whole myriad of issues, everything is so connected. I hope when his diet gets adjusted (after the results) that he feels better quickly.

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  2. I am so glad you continued to bring him into the doctor and thankful for that nurse practitioner. Keeping you and Ethan in my thoughts and prayers. Hopefully getting him on a gluten free diet will help also.

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