He Doesn't Have Celiac!

Yay! Sean's doctor just called with the initial lab results and he does NOT have celiac disease! She also feels he does NOT have reflux and doesn't need to be on Prevacid for it.

However, the red spot in his stomach tested positive for a bacteria infection called Hemicobactor Pylori. The treatment is a course of 2 antibiotics taken with Prevacid for 10 days 14 days. I'm not sure if he will need some sort of repeat test (blood work?) to see if it clears up. She said it appears to be in the early stages so hopefully we can treat it easily.

I asked her if she felt she needed to see him again or doing any other testing to look for physical causes for his feeding issues and she said no. She thinks it is something he will have to overcome thru feeding therapy. Sigh.

While I am somewhat disappointed that there wasn't a clear medical answer found, I guess I am also relieved that he doesn't have a life-long disease. The thought of living with those restrictions was overwhelming.

I guess we are back to square one- praying for him to overcome these aversions and encouraging his therapy. Thanks for everyone thoughts, prayers and advice.

Edited to add: I just picked up his prescriptions from the pharmacy and he is actually taking 2 different antibiotics 2x a day and Prevacid 1x a day for a course of 14 days. Wow! That will be fun.

Scope is Done, Researching Celiac Disease

Sorry I didn't get this typed up faster, but here's update about the endoscopy Sean had done this past Thursday.

Sean handled the stay at the Same Day Surgery Center pretty well. Mostly I just had to work on distracting him all morning from eating or drinking, as the surgery wasn't until 11:15 and he hadn't eaten since 9 the night before. I heard "Momma! Eat! Drink Milkies!" at least a hundred times in the 4 hours he was awake before the surgery. This is what Sean looks like when you tell him, "Sorry, baby, no eat yet."

Doug took Aidan and Ella to his office to try to watch while he worked and I took Sean to the hospital by myself. I packed his backpack full of things to try to distract him with while we waited. I thought it might be useful to list them here and I'd love to hear what fun things you pack for your kids in these situations. I always find out that I should bring x and maybe not y next time.

1. pull ups and wipes
2. food, spoon and sippy cup for after surgery- important to keep this hidden in a separate bag within the backpack. Otherwise it's just plain mean torture!
3. his lovey blanket, given to use when he was an infant at the Denver Children's Hospital. We use it for naps and it's been to every hospital stay.
4. a few favorite books. This time: Chicka Chicka Boom Boom, Brown Bear, Brown Bear, and The Big Red Barn.
5. 2 Disney Cars toys (McQueen and Filmore.)
6. 3 Madagascar action figure toys.
7. Woody
8. Blank sheets of paper and 4 washable markers.

I also tucked my keys, wallet and cell phone in there. I grabbed about $3 in quarters in case I needed to get a vending machine snack/drink for myself. Sean's favorite item this time was the markers and paper. He just loves coloring and having me draw things for him.

Anyway, the nursing staff was very nice and Sean charmed them. He throws a huge fit about those hospital bracelets, so I put them on his ankle so he doesn't obsess over it. They said he didn't need to wear a gown (very strange! never heard of that!) so he just went back in his clothes & shoes with his blanket. They didn't have to do an IV, just gave him a bit of gas and then did the test.

His doctor came out to see me about 30 mins after they took him and gave me photos she took to tell me what she saw. She said his esophagus looked wonderful and healthy- no signs of food allergy irritation or reflux damage. His stomach also looked pretty good, but had a small red spot that she took a biopsy from. She said it did not look like an ulcer and wasn't too concerned about that. She did find a bit of paper that Sean swallowed (he loves to eat books and must of chewed a bit off while we were waiting!) She said they suctioned it out and moved past it.

Then she got to the short bowels aka small intestine. She said "His short bowels are not healthy. I don't like what I see there." She pointed to white areas and said that she took 6 biopsies from there. She didn't say she knew exactly what it is, but is leaning towards Celiac Disease. She said she should have the blood screening results back on Monday or Tuesday and will call me right away. The pathology results take 10 days, so we won't know anything for certain for awhile.

When the nurses let me back to get Sean he was crying and asking for me. As soon as I held him he said "Momma Milkies! Drink Milkies!" I picked him up and wrapped him in his blanket and they had us move to a semi-private waiting area with recliners. He was also very upset because one of his shoes had come off and he wanted it back on. :)

We had a nice snuggle and milkies, then he ate 2 packs of food and snuggled a bit more. After about 20 mins he was alert and ready to move around. He wanted to look out the window, play peek-a-boo with a nurse, and say hi to everyone that walked by. Meanwhile, the other kids coming out of surgery are crying and generally very upset. I was having a hard time keeping Sean "resting" so they let us check out in less than an hour.

He did fine on the drive home and had no ill effects from the test other than being extra tooty from the air they pumped in him.

So now we are waiting to see what happens next. Of course I have been reading up on Celiac disease like crazy. I particularly like this link. I found this part of that article interesting:

The length of time a person is breastfed, the age a person started eating gluten-containing foods, and the amount of gluten containing foods one eats are three factors thought to play a role in when and how celiac appears. Some studies have shown, for example, that the longer a person was breastfed, the later the symptoms of celiac disease appear and the more uncommon the symptoms.

We are having a busy weekend with family visiting to celebrate Eleanor's birthday, so that is helping take my mind off of the wait. I will try to post photos of her party soon!

So What's Going on in There?

Today, we took Sean to meet with a Pediatric Gastroenterologist. For some reason, in spite of his years battling GERD and his feeding issues, this was our first time seeing this type of specialist. It was really reassuring to talk with her, discuss Sean's history and hear "I think it's time we find out what's going on in there."

Interesting questions she asked:

Dr: Does he eat a lot of carrots, squash and sweet potatoes?
Me: Actually the only vegetable he eats is sweet potatoes and yes, he eats it twice a day.
Dr: That's explains why his coloring is so orange.

Dr: So how did he react with you first introduced milk to him?
Me: We first gave him cow's milk around 15 months old and he'd drink it then spit up cottage cheese. So we tried Lactaid milk and that had the same effect. Then we tried Goat's Milk and that stayed down a little better. Finally around 2- 2 1/2 he started keeping cow's milk down.
Dr: So what did he drink before he tolerated cow's milk?
Me: Breastmilk, almost exclusively. We used the Goat's Milk for minimal supplements since he digested breastmilk the best.

Dr: Does he drink Pediasure or some other fortified milk for nutrients?
Me: No, he refuses them.
Dr: So he's just been growing on the few baby foods and milk?
Me: Yes.
Dr: That is why he is on the smaller side of the growth charts. Those foods are not providing enough variety and nutrients to sustain long term growth.

(FTR, Sean is one month shy of his 5th birthday, weighs 34 lbs and is about 39.5" tall. He wears size 4 clothing for the most part, though he is tiny in the britches.)

Sean was super good for the appointment (he usually is good at appointments, must be a benefit of frequent Dr visits.) She brought up that food allergies can cause reflux-like symptoms and feeding issues. We also discussed Celiac Disease as a possible trigger for feeding aversions. She had us take Sean for a blood draw and scheduled us to return on Thursday for a sedated endoscopy. She said she will have the initial results of the endoscopy within a couple of days.

The best thing about the appointment was that she feels there is a physical reason Sean has developed his feeding aversions and she is going to be active in finding it. YES!!!!

We want to see more of this (ignore the fact that his shirt is soaking wet from his fabric chewing addiction):


And we'd love to see this disappear (btw, that is about a week's worth of food for Sean. He makes up in quantity what he lacks in variety.)