Sarah Gets Crohn's Disease

I've been writing this post for quite awhile ... editing here and there. Adding, mostly. Sorry if it rambles.

Sarah's saga started back in May, while school was still in session. She appeared thinner and had dark circles under her eyes. I thought maybe she was dehydrated and encouraged her to drink more water. Later she started complaining of abdominal pain - but not often - and she got her first pimple. Right in the middle of her nose. So I thought maybe she had early onset puberty. We had a menstruation talk in preparation but nothing materialized. Since the abdominal pains continued - sudden and strong - but only about once a week, we took her to the pediatrician.

Dehydration and puberty were ruled out. She had gone from the 75th percentile in weight to the 25th. She had a urine test and a blood test. The urine test results came back that she was slightly anemic and that she didn't have a UTI, but there were signs that it might become one, so she was given antibiotics and put on a multivitamin with iron.

Results from the blood test came back negative for Celiac disease, Crohn's disease, and some other things. But she was still having abdominal pain, occasional vomiting and diarrhea. And she was obviously not her energetic usual self. Easily fatigued and not interested in her usual activities, even though by this time summer vacation had officially started. The doctor ordered another round of urine and blood tests and also requested a stool sample.

Then came the diagnosis of a C.diff infection. Her symptoms were textbook and we were relieved to be treating the right thing with the right medication, Flagyl. She also started a probiotic called Florajen.

During the course of Flagyl, Sarah complained of a sore throat. We went to the doctor again, expecting strep, but she was diagnosed with herpangina, common in the summer months, and even on the local news as being prevalent in the area. In younger kids, it's commonly referred to as Hand, Foot & Mouth Disease. There can be ulcer sores in the mouth and blistering on the palms and feet. There's no treatment given for that - just Tylenol or Motrin for pain, and her throat pain stopped relatively quickly.

After her Flagyl was finished, we went back to the doctor for a follow up visit with another stool sample. This time, the C.diff appeared to be gone, but she was still anemic and still had a few lingering mouth sores. They recommended a new yeast-based probiotic called Florastor. She was also still having fatigue, diarrhea and occasional vomiting, so we got referred to a pediatric gastroenterologist.

After her initial exam with the gastroenterologist, Sarah needed an upper endoscopy and a colonoscopy with biopsies. Four days later, she was under general anesthesia for both procedures which took less than an hour. The doctor took many interior photos of her digestive tract and concluded that Sarah had Crohn's disease, an auto-immune disease of the digestive system, even though earlier blood work for that came back negative. The mouth sores from herpangina may have in fact been a Crohn's symptom, as the disease can strike anywhere in the digestive tract, from the mouth to the lower bowel. She was put on a steroid to reduce inflammation and Prevacid for stomach irritation.

Sarah followed these procedures with a tuberculosis skin test and an upper GI with small bowel x-ray series to help determine which medicines might work best for her. It was a five-hour process to drink the barium "shake" and wait for the fluid to pass through her system, with x-rays every 30-45 minutes. Her TB skin test was negative, as expected.

After about two months on the steroid, she had gained almost 15 pounds. Her low at the time of the scopes was 59 lbs. and, as of last Friday, she's up to 74 lbs. and in the 50th percentile. Some of her energy has returned and she's no longer having diarrhea or vomiting. She does deal with constipation, hiccups, heartburn, and frequent trips to the restroom.

She is now on a maintenance medicine called Azathioprine and on a reduction plan for the steroid. She continues to take iron, a probiotic, a children's multivitamin, and Prevacid. Hopefully in a month or so, we'll be able to drop the steroid completely and she may lose a little water weight. Her cheeks have swollen to the point that she has "chipmunk cheeks" but luckily her friends at school are kind and don't tease her about it. We have to get blood drawn every two months or so. Her current diet does not allow popcorn or any ultra-fibrous foods. Other than that, she can eat like her siblings during remission.

The more people we've told about her diagnosis, the more people have said that someone they know has Crohn's. However, most of these cases are in adults. We take comfort in the fact that Sarah's gastroenterologist also has a daughter Sarah's age and can say "if it were my daughter..." with a relevant perspective. And yet another reason to be thankful that this house "waited" for us - our next-door neighbor, Ricky, has suffered from Crohn's for years. He's been on countless medications and even had a portion of his bowel removed about six years ago. He has a great outlook and lots of experience and is willing to share all of the ups and downs.

Her gastro doctor, pediatrician, and we are all pleased with her progress this summer. We hope this disease will stay in remission for a long time and flare-ups will be few and far between. We'll keep you posted...

Please send me any questions via email and I'll do my best to answer them.

Sarah's 10th birthday

Sarah selected BJ's for her birthday dinner. The food wasn't good and the service was as slow as ever, but it was a nice way to stretch out her birthday dinner!

Two days later, we had her birthday party. I had suggested a fashion designer sleepover party at home. She wanted a LEGO Friends party at Chuck E Cheese and a cookie cake (gasp!). She ended up with a non-themed party with Funfetti cupcakes at Main Event, the same place Ethan had his birthday in April. *head spin*

Ali & Sarah

Cara & Sarah

Sarah & Kamryn

Grace & Sarah

Flag Ceremony

Ethan got to be a flag bearer during the closing ceremony of the scout meeting. Lucas became a Tiger scout!

Perot Museum of Nature & Science

The Perot Museum of Nature & Science just opened last year and we needed something to do on a rainy Labor Day weekend. It also completed a science belt loop for both Ethan and Lucas, so it was definitely worth facing the crowds.

Dinosaur bones.

Sarah pretending to be a bird in a 3D simulator.

Machines area

Sarah racing a world class sprinter.

Jacob racing a T-Rex.

First Day of School 2013

First day, and we're not the NEW kids anymore. Hallelujah! Sarah (4th grade), Ethan (3rd grade) and Lucas (1st grade). Jacob is in 7th grade and pictures are mortifying to him. LOL.

Lucas' birthday

In our house, when it's your birthday, you get to pick the restaurant we go to for dinner. Lucas had selected Wendy's, but somehow dad finagled his way into Texas Roadhouse. At least Lucas likes throwing peanut shells on the floor! They sang to him and let him ride the birthday saddle, so it wasn't a total loss. 

Lucas' birthday party was going to be a Minecraft theme (just like Ethan's). Since the game is relatively new, it hasn't been picked up by all the party manufacturers and you pretty much have to make everything yourself. I spent a lot of time trying to make sure Lucas' party wasn't an exact replica of Ethan's party, UNTIL ...

Two days before his party - as we are shopping for plates and cups and goodie bag contents - Lucas changes his mind and says he wants a Spiderman party! So I change all the green items in my cart for red and blue UNTIL ...

He sees the Teenage Mutant Ninja Turtle supplies! That's what he wants. So I explain that once we leave the birthday aisle, he can no longer change is mind. He'll be stuck with TMNT. And that was fine with him. We change all the red and blue items back to green. And it turned out to be a blessing in disguise because Target makes a TMNT cake AND the turtles love to eat pizza! Dinner at the party...solved!

One of those rare moments that last minute chaos worked into my favor!

His party was held at an indoor playground called the Ark. Two stories of climbing and tunnels and ramps and obstacles - similar to one of our favorite places in MN, Edinborough Park.

Hot and sweaty, but smiling, kiddos!

Outtakes

Just to show you how a Nault photo session usually goes down...

Fun visits from friends!

My college (and beyond) roommate, Connie, came to visit for a couple days. She is the one who met a Tunisian man in Houston, moved with him to Paris, got married there, and has since moved to Cairo. It's a challenge to see her geographically, but when it works out, it's fantastic!

We didn't do much - wasn't necessary. We just needed to catch up. Ethan said "You and my mom, you just talk all the time!" That's right, Ethan. That's what friends do. 

Later that week, we had a visit from an old San Antonio playgroup friend. She brought her three kids and we got Pam's here too, and enjoyed a nice lunch like good ol' times! They've all grown so much!