Friday, February 4, 2011

What a week

In case you didn’t know, Ella lives on carbs. Everything she eats is packed full of flour. Chicken nuggets, fish sticks, Cheerios, mac and cheese, spaghetti, sandwiches, etc. The girl loves her some carbs. So Saturday night Ella had a bowl of cheerios and 3 chocolate chip cookies (they were small…don’t judge). After she finished eating, Joe and I noticed that her stomach was sticking out. It looked swollen, almost like she was a malnourished kid. We’ve noticed it before but always wrote it off as nothing, but for some reason on Saturday it really started concerning me. I guess there’s a chance she could be malnourished, but I would be shocked. She eats a lot and takes vitamins every day.

I decided that the best thing to do was google it…after all, doesn’t google always have all the right answers? So I did a search and immediately there was a theme in all the information that popped up…Celiac. For those of you who don’t know, celiac is when a person isn’t able to tolerate gluten. Joe’s mom and 2 of his sisters have celiac, and it’s a genetic disease. Obviously, given those factors I took a closer look at the symptoms of celiac. Several pieces of the puzzle started coming together. Whenever Ella eats she has a hard time standing up afterward. I always just assumed that her legs were stiff, but what if it was actually her stomach hurting? And one of the biggest symptoms in kids is that they can’t gain weight. Ella has always been small, but she’s lost 1 pound since starting school, and I was completely shocked because she eats all the time…but if she’s eating things that her body can’t process then she wouldn’t be gaining weight. Anemia is also a big symptom because the body can’t absorb iron, but anemia is also really common in EB kids, so I wasn’t too concerned about that (Ella has been on iron supplements since she was a baby).

Given the above information, I decided that until we could take her to the doctor I was going to cut gluten out of her diet. It wouldn’t hurt her to reduce her gluten intake, so it wasn’t a big deal. Sunday was her first gluten-free day and both Joe and I noticed a huge difference. She no longer complained about things hurting when she stood up after dinner, she didn’t walk hunched over anymore, and it almost seemed that her appetite increased. We ordered pizza for lunch and got her a special gluten-free pizza. The girl ate 3 slices!

Then at school on Tuesday Ella’s teacher noticed that she was having a hard time standing up and at one point almost fell. Both Metti and I noticed that Ella just wasn’t acting like herself, so add that to her stomach issues and I put a call into the doctor. Fortunately she was able to see us that night.

Far and away we have the best pediatrician on the planet! I won’t say her name here, but if anyone in Northern VA is having a baby, you need to go to our clinic for all your pediatric needs. All of the doctors there are amazing…but ours is the best (of course). She listened to all I had to say about Ella and all of her symptoms, etc. But what really struck me was that she took one look at Ella and said, “She’s anemic. We need to test her hemoglobin (basically the same thing as testing her iron).” So the nurse came in and tested Ella’s hemoglobin (in Ella’s words, “She gave me a chuge boo boo!”) and Ella was at a 7.5…at 3 years old she should be at an 11. Ok, so this explains a lot of her symptoms and further reaffirms my celiac suspicions, especially since she was taking double the average dose of her iron supplement and is still only at a 7.5.

We have now doubled her dosage of iron (yeah, that’s a lot of iron) and are keeping her on a gluten free diet until I can get her in to see a GI. Already she is looking better and has more color in her face. It’s going to be awhile before we see the long term effects of either of these changes, but I feel confident that she’s already feeling better and that we’ll see some significant improvement before long.

Wednesday Ella had to go back to the eye doctor. This is the most dreaded doctors appointment. The doctor is great, but how the appointment goes is fully contingent on how cooperative Ella chooses to be. If she won’t cooperate, then things go very badly. If she does cooperate then we all leave with smiles and make a stop at McDonalds on the way home. Ella’s mood often depends on how long we have to wait before actually getting to see the doctor. The last time we went we arrived at 9 and got home around 1…that makes for a VERY long day. This time things went much smoother. We were in the exam room within 30 minutes of our arrival, and saw the doctor shortly after that. Ella was mostly cooperative. She didn’t shut her eyes (which is always fun when you’re trying to do an EYE exam), and she told them what pictures were on the screen. Unfortunately we have to be more aggressive in patching her left eye. Her right eye still isn’t up to par and the minimal patching we’ve been doing hasn’t worked enough, so now our poor girl has to wear a patch a minimum of 6 hours a day…ugh.

I guess the good news is that we’ve had our fill of doctor visits for awhile. It’s never fun to have 2 in one week, and especially 2 in 2 days. Ella was a champ, though, and she told me all about how brave she was and how proud I must be. And I know you’re probably feeling really bad for Ella with all this stuff. Don’t worry, she’s doing fine. The truth is that she hasn’t even really noticed that she’s on a gluten-free diet and thank heavens she hasn’t asked for any of the foods she’s not allowed to eat. She does hate the eye patch and complains whenever I put it on, but she deals with it. I am always so amazed at how strong she is, even after all the junk she has to go through. She is an amazing little girl.


Paige said...

Ella is one amazing little girl! Trader Joe's has a lot of gluten free food that is really yummy, just in case you need some fun ideas for Ella. =)

Linda said...

Hi Katie: You are right, Ella is an amazing little girl. So sorry about the anemia. You guys will figure what is best.
I laughed when you told the eye patch story. Meg (Leah's Mommy) had a lazy eye and we did all the eye patching and the zebra stripes on the glasses. Meg hated it but she did what she had to do. Kids are amazing, aren't they?
Give that precious Ella a big hug for me. Love and Peace Leah's Nana

Steph C. said...

My daughter was supposed to wear the eye patch too at about two years old. We fought it and fought it and never could keep it on long enough. Our pediatric opthamologist finally decided to use dilating drops daily in her good eye to make the weak eye work harder and take the place of the patch. We did this for six or seven weeks. Claire rarely complained about the drops, and it worked wonders! I don't know if this is possible for Ella, but you might ask. I have followed your blog for awhile and think your Ella is amazing!

Heidi said...


I really enjoy reading your blog! Your little girl Ella is so adorable!! I love the name Ella, it's my mothers middle name and my great-grandmothers name! I am really sorry to hear about her diagnosis. Especially for children at that age it's hard if they can't eat all the same yummi things that her friends are eating. But there really is so much alternative gluten free food, so I guess it's just a questions of getting used to it. All the best to you! :0)

Anonymous said...

Hey Katie!

I have cut gluten out of my diet for the sake of eating better, and it has been an easy transition. Trader Joe's has great waffles that are gluten free, and Giant caries a whole slew of products that are wheat free...even Mac and Cheese!!! Giant also has cookies and snack crackers that are wheat free.

Janel said...

Have you noticed if her skin is better since cutting out the glutten?

I noticed that whenever I eat whole wheat (bread or pasta or even brown rice) my mouth breaks out - I've considered cutting out gluten too. When I've done a "low" carb diet my skin gets better too - I was just wondering if you've noticed a difference.

RDEB - 36