Friday, April 9, 2010

Come What May and Love it...Celiac Disease...

I can already tell a difference in his complexion! The top picture was March 16 and the bottom picture is 3 weeks later.



On March 8, I took Ella in for her 1 year well check and at last minute ( a tender mercy from the Lord) I decided to take Brigham with me for just a quick weight check because he has always been tiny the Doctor said I could stop by and weigh him anytime. So we dropped Parley off at his cousins and went to the Doctor. Ella was a thriving 21 pounds and Brigham (2 1/2 years old) was 22.2 pounds, had gained 10 oz. in 6 months and only 4 pounds since he was 12 months old. So the Doctor asked some questions about Brig's diet and about his behavior, and I said he is a perfectly happy boy who eats like a horse! He asked if he had diarrhea, which I thought about and realized it had actually been quite a long time since I had changed a solid poop on him, they weren't always way runny just a little mushy (sorry for the details) but I figured they were always mushy because he has a diaper on and no place else for it to go. My wonderful pediatrician recommended that we have Brigham's blood taken and tested for Celiac Disease. So after a terrible experience with drawing blood from my tiny 2 year olds arm I came home and broke the news to Trav, Googled Celiac Disease and then cried and had a break down as everything I read fit Brigham perfectly and I knew he had it! A couple days later my pediatrician called with the blood results, and the number that they look for to be elevated on a celiac patient was very elevated on Brigham, normal was 0-20 and he was 247!! A sure sign of celiac but my doctor wanted to be sure so we made a trip out to SLC to see a pediatric GI specialist, She was awesome and put us at ease with Celiac. She checked Brig out and was very suprised at how happy and adorable he was, because she said usually in a child celiac they are very irritable and onery that she can't even stand to be in the same room with them and she said besides him being a little small he looked pretty healthy and happy! but she scheduled us for an endoscopy of the stomach up to Primary Children's Hospital, so on March 16 we head up to PCH, I have to say that this was the hardest day, his appt wasn't until 1:30 and he had to have an empty stomach so wasn't able to eat anything since the night before, it was terrible as my little brigham is a big breakfast eater, it was so hard holding him off, and the worst part was we waited at PCH for 1 1/2 hours before they even took him back, so finally at 3:00, I held my little brigham as they gave him the gas and I felt him go limp in my arms (a terrible feeling btw). 15 minutes later the surgery was done, the dr told us all went well and we would have to wait a couple of days for the results of the biopsy before getting the 100% diagnosis! So one day later the Dr calls me and said it was so obvious we didn't even need another day, Little Brigham has Celiac Disease!Even though in my heart I had already known, my body still sank and my heart broke for little brigham! So thus began Brigham's lifelong Gluten Free( no wheat, barley, rye, possibly oats) diet! It has been quite the learning process and I still have soooooo much to learn, gluten is in most processed foods and can be hidden in a lot of different ingredients, like malt or natural flavoring or any food starches! It has been very hard to find gluten free foods for my 2 year old, but we seem to be getting along fine. Brigham is s trooper and I believe he has had little angels with him because He has already figured out what his body can and can't have, he isn't into breads or other baked goods, but he loves Rice, potatoes, meats, and those are all gluten free, so without us knowing he had pretty much started a gluten free diet all on his own and for this I am grateful (another tender mercy ) . The only thing that he has had to give up that I think he misses the most is he BBQ chips and His daily 2 bowls of oatmeal (oats are only contaminated with gluten because they are processed in the same place as wheat). Luckily for us this disease has become more and more common and so now is a better time than ever to get it. Companies are now starting to label their foods Gluten free, such as General mills, all of their Chex cereals are gluten free and are brigham's new breakfast staple! I have had so many people give me courage and help me out with celiac websites and Blogs but right now as I start searching it is all a little overwhelming as I look through gluten free recipes and find that I haven't heard of half of the ingredients in them, so for now we are sticking to what we know brigham can have and what he likes! We found a new treat today, caramel rice cakes and he loved them, thats always a plus!

I have been very grateful for this little experience/trial in our lives, it is not an ideal thing to have as it is a lifelong disease, there is no cure and he will have to deal with it as he goes to school, scouts, dates, mission and have to explain that he is gluten free or will maybe have to take his own little treats wherever he goes. I feel bad that he doesn't get to eat cookie dough or taste the cake batter or roll out cinnamon rolls with me and enjoy them ( a childhood memory of mine). I know that eventually I will learn to make these things gluten free for him but for now we are taking it one step at a time and sticking to rice, any chex cereal, turkey and cheese roll ups etc etc. They say that we should see improvement in him right away and that he should start gaining weight right away, so I am anxious to see my little brigham put on some pounds! I have already had so many people tell me they can tell a difference in Brig! So I am so grateful for that. He still complains of tummy aches but they say that is because his stomach will take a few months to heal and then hopefully those will be gone! This has been a testimony builder for me as I have seen the Lord's hand in my life, the doctors and I believe that we caught this very early as this is something that they can be very sick from and brig didn't get too sick so I am grateful for that! I believe it was a tender mercy from the Lord and a prompting from the Holy Ghost that I took Brig to the Dr with me that day. I even spoke to my pediatrician after we found out Brig's diagnosis and he told me it was the Holy Ghost that told him to test brig for that (another tender mercy)! Ever since this all began I keep thinking of Elder Wirthlin's talk, Come What may and love it! We are trying to do just that! I feel so blessed to have little brigham in my life as he has taught me so much, I can't believe I am the lucky one to be his mom. He has the sweetest little spirit and such a tender heart, he is very unselfish and is always worried about everyone, whenever I tell him I have a head ache or something, he gives me a very sympathetic ooh and then tells me to go lay on the couch! I love Brigham and I know that heavenly father has been very aware of him and has been looking out for him! What a special little boy! Love you Briggy boy! Now its time to grow Big and Strong!!
A very hungry Brig just before his surgery, he was a trooper!

And yes he still has binky, we are working on that!
Just coming out of the surgery, he was so out of it, I didn't like seeing him like this!

Maybe in a couple of months I can post some before and after pictures of Brig and hopefully there will be a big difference!

5 comments:

Justin and Jamie said...

Suzie- Wow that is quit the experience. I had no idea about all this. You and your family are amazing! If you need any info or recipes or just need to talk about the disease, I have a friend here in Texas that has a daughter with the same thing. I work with her in the Young Womans and she tells me all about it. I know she would be more than happy to talk or help, and her daughter also who is 21. Can't wait to see pictures of Brig in a few months!!!

Heidi Openshaw said...

What a relief to finally know what's going on with your little man. You are handling it all so beautifully Sue. You're an amazing mother and little Brig is so lucky to have you.

Kyle and Ashlee said...

Sue...it is amazing how the tiniest things...like taking him to the Dr. that day with you can be a blessing in disguise. You are such a wonderful mom and you will take such good care of him. He is so lucky to have you. Your strength and faith are truly an example to all. We love you and your family!!

salmons said...

hey ashley has the same thing so i am sure you could talk with her about it. they als have a gluten free bakery in kaysville on 200 n and they have way good desserts. i am sure you will be great with helping him through his new eating habits.

The Cox's said...

Poor little guy. I did cry when Zoey got her first shots and her PKU, so I can't even imagine PCH! You are quite the chef, so gluten free or not--you'll whip up some divine meals!