A lot of updates...

It is so hard being Owen’s only advocate. Sometimes I wonder if I am imagining everything. It’s nice to have Chad by my side. He has seen what I have and he reminds me I am not nuts.

We got Owen’s blood work back – the blood he had drawn after his biopsy. In this panel they were looking for “two things”. And, if they were there, he would have been classified as a true, and very young, Celiac. Well guess what?? One was there and the other wasn’t. He has the genes needed to even ever contract the disease. But the serology test was negative. This very well could have been a false negative (this particular test is not the most reliable) because he didn’t have gluten in his system when he was tested.

We have spoken to countless people in the Celiac community. Everyone tells me that since the biopsy was positive, then he is a Celiac. The only one who wants to give him gluten and then test him again is his GI doctor.

I get that it wouldn’t be fair to eliminate gluten from his diet if it wasn’t necessary. But considering all the gluten free friendly food out there, it honestly would not be as hard or burdensome as one thinks.

I have struggled with what to do. I am continually bugging the Houston Celiac Support Group Chairman and our Nutritionist and even a specialist in Los Angeles. Chad and I have decided, that at least for the next few years, Owen will be gluten free. I don’t want to see him in pain and until he can intelligently tell me what he feels like after ingesting the stuff, I won’t knowingly give it to him.

We have also decided to go gluten free as a family. It has been three weeks…and we were excellent the first two weeks…man are the holidays making being “good” hard.

I am a pasta freak. I could honestly eat some form of it for every meal. Thanks to those who have traveled this road before me, we haven’t had to try all the gross gluten free pastas…we get to jump right in to Tinkyada. You can barely tell a difference. Oh, and of course Amy’s. The one thing I have yet to find that I like is a pizza. But we are just starting this journey and I am confident there will be a tasty product out there.

Hello Whole Foods. We are going to get to know each other quite well!

Food Update: as I have posted earlier, we started with chicken. It went well the first two days, but we took an unintended break and then when we picked back up it didn’t look too good. Some days we had awesome diapers but others…well, let’s just say it could have been better.

Thankfully, since Thanksgiving, the night screams have dwindled. I know the acid reflux medication is working!

We have also introduced avocado, and 100% organic rice. I have to prepare it myself. The first time we tried rice cereal, back in August, I bought Earth’s Best…bad reaction. But so far, he isn’t reacting to the rice I make…

This kid has jaws of steal and if he doesn’t want to eat, which he doesn’t want to do most of the time, he doesn’t. The Nutritionist thinks it is an emotional thing now. So far his experience with food has been painful. We just have to show him that not everything hurts.

I am starting to suspect that one or two days of a food are fine but any more than that is not. Avocado for example, he did okay at first but by day three we started to see signs of old Owen.

Since he hasn’t been a big fan of food, once I found something he liked and would eat, it’s all I want or trust to give him…it is rice, chicken and a little of his formula puréed together. It smells horrible but he likes it. Last night was day three and so far, so good.

Another big change has been the formula. He has been on Nutramigen AA since January 2010. We tried to drop down to regular Nutramigen a few months back but saw blood in his stools. So back to AA it was. But this last time we went to order our month’s supply, the manufacturer was ALL OUT! And they couldn’t ship again until December 28. This meant that we had to find it elsewhere and that was not easy, nor was it cheap! This stuff is already expensive as it is, to have to pay even more for it physically hurts. So we decided that we would try regular Nutramigen again; but this time, we would introduce it gradually. We first started with 1 oz of regular to 9 oz of AA. Now we are up to 50/50. And no blood visible to the naked eye!!! We will need to take a stool sample in for testing but I am very hopeful he has or is beginning to grow out of his dairy allergy. They said this would probably happen after his first birthday. And he is almost 14 months old! The difference between regular and AA is this: AA has dairy and soy proteins but they are broken down to their most elemental form – this makes it easier for someone with a severe allergy to digest. Regular is highly broken down, but not as much.

We are making progress!! Oh, I got gusty one day last week and gave him carrots…I wanted him to have something “sweet”. Um, bad mommy. I won’t be doing that again! He didn’t care for it anyway so no big loss there.

Thankful.

Thanksgiving is my all time, favorite holiday. So, in the spirit of the day, I thought I would list what I am thankful for…and then my list started to get too long. Below is a short list, and the most important:

Grace
My husband
Healthy Children
Family
MLS
Nutramigen AA
My job

We have had such an interesting year. Lots of ups and downs but all in all, 2010 has been one of my favorites.

The first goes without saying, but it is so important to me, so I had to share. In 2010, Chad has stepped up to be a fantastic father and husband. Not that he wasn’t before, but before he didn’t have the sleepless nights and a working wife like he does now. He encourages me in my career and carries the burden of childrearing equally. In 2010, we found Nutramigen AA. Without it, I don’t know how Owen would have survived. He is thriving despite having not been able to eat. This truly has sustained him. I got a new job, which I absolutely love. I enjoy what I do every step of the way and I know I am respected and appreciated. With this new job, I have met new people who I know will be dear friends for rest of my life. We found the most amazing school ever. The teachers there have taken our children under their wings and prayed for them as if they were their own. And to top all that off, it looks as if we are closer to solving Owen’s GI issues.

I am so excited and full of hope. I can’t wait to turn my computer off tonight and go into a long weekend spent with my mom, dad, grandmother, husband and children (oh, and try chicken on Owen!).

Happy Thanksgiving everyone.

Excited & Hopeful!

I am excited and encouraged; more so than I have been in some time. Last week I had a conference call with Catherine Kruppa, registered dietician. She was so sweet and sympathetic and sounded as if she wanted to relieve Owen of his pain as much as Chad and I do. I can’t even begin to express how excited I am to be working with her! Our first face-to-face meeting is November 30th. This past weekend she took it upon herself to check into some things for Owen and consult with others in her field and friends of hers in different fields. While she suspected sugar too from our initial conversation, it looks as if she is leaning towards a severe case of Celiac as his problem. Won’t that be wonderful? Celiac is no fun but it is way, way better than a sugar intolerance. Over the holiday weekend, we are going to try 100% natural chicken. Maybe even at the Thanksgiving table. It’s fun to think he will sit down and eat with us for the first time!!! Catherine is hopeful as we are, that chicken will work.

I also met a new friend this past weekend who has been struggling herself with GI and other issues. No one could figure it out and then she, on her own, eliminated gluten from her diet and she is doing so much better now. The things she was telling me about Celiac just blew me away…there is so much I don’t know.

Hopefully we get his final blood work-up back this week. While he already tested positive for Celiac, I think this test will just be a confirmation.

Chad and I have been thinking seriously about changing our diet as a family and not just accommodating Owen. And we have decided, as hard as it will be, our home will be a safe home for him. He should be able to eat whatever is in our home.

What? I need a new Dr., ASAP.

Something has really been bothering me. When we were in our ‘consult’ with Dr. K about Owen’s biopsy results, he kept referring to skin rashes. Yes, Owen has Eczema and I have mentioned that to him and asked if there was any correlation to a break out and his diet but by no means have I ever relayed to him that that was why we came to him in the first place. Always, from day one, it has been about Owen curling up in a bawl, crying out in pain, and his slimy, bloody diapers. And at the very end of our last meeting, if I remember correctly, he said in doing the food challenges, I should ignore the skin rashes and just push through. I had both kids with me, it was half past six in the evening and they were tired and cranky to say the least. We had already been there for 2.5 hours and I was ready to leave. What he said stuck with me, but honestly, in the moment, I didn’t have the energy to make him clarify.

So over the weekend I reviewed the biopsy results. And right there at the bottom, clear as day, the lab was told “child breaks out in skin rash with the consumption of food.”

What the hell????????????

What about everything else. The big stuff? I don’t care about a minor case of Eczema. That is the least of my worries. And honestly, so long as I am good about coating him with Cetaphil three times a day, it isn’t that bad.

I have been putting off finding another doctor. One, we are supposedly with the best pediatric GI in town. Two, I don’t want to start from the beginning. Three, our regular pediatrician said Dr. K had the best ‘bedside’ manner and all the others were basically jerks. But it has gotten to the point of ridiculousness.

Any recommendation for a pediatric gastroenterologist in the Houston area is greatly welcomed.

I suspect sugar even more now...

We met with the GI doc on November 10. I relayed the results to everyone on the 11th. By that afternoon, Owen had come down with something and we were headed for a long weekend of hunkering down. Over the past few months we have determined that Tylenol doesn't affect his GI tract but we suspect that Motrin does. But when his fever spiked to 104.7, I had no choice. I had to alternate between the two just to make him comfortable. AND, he was put on Amoxicillin. Oh, that is a lot of sugar and I cringe just thinking about it. But, we had JUST BEEN TOLD he didn’t suffer from sugar problems. Guess what, last night he reacted. I am just that much more convinced it is sugar. Or at least a certain amount of sugar. Maybe if we come up with a good rotation schedule he can have sugar???

A diagnosis for Owen. Or lack thereof.

Diagnosis =

“I am just as baffled as you are.”

The above, I think, is one of the most frustrating things I have ever heard. Even more so that it came from Owen’s gastroenterologist.

His biopsy results are in and they are a bit confusing and inconclusive. He does not suffer from a sugar problem. He does suffer from a pretty severe case of acid reflux (which is interesting because he doesn’t show any physical signs of it). His villi are blunted and he tested positive for Celiac Disease. The first and the last are the most confusing. One, there is no gluten in all the foods he reacted badly to (i.e., fruit) but there is fructose. In fact, Owen has had no gluten in his diet that I know of. And the doctor’s answer to that…“just as baffled as you are.” So, we are going to look into the Celiac diagnosis a little more AND we are going back to the food challenges. Despite the fact that I did not go to med school, I am convinced it is the sugar in food that causes him so much difficulty – it is the one common in all the foods we have tried to date (other than rice). During our food challenges over the next two months, I am going to steer clear of any food that has sugar in it (naturally or artificially). The doctor seemed okay with this but he wasn’t too encouraging as to whether he thought it would work.

As for Celiac Disease, apparently there is more to it than I initially thought. At least for someone who has it and goes on with life undiagnosed. Celiac can lead to diabetes, colon cancer and more. So, before the doctor severely limits Owen’s life by prohibiting gluten (we already eliminate casein and whey) he is going to run one more test. This test will look for two identifying factors that without a doubt say, yes he has Celiac, and yes, he should never, ever eat gluten. If those two things show up, I will then proceed to be tested. Celiac is hereditary and I have presented symptoms of it in the past. If those two things do not show up, we will include gluten, whey and casein in his diet and he will have another biopsy in 6 months to see what damage, if any, has been caused by it. Owen is also going to be tested for diabetes. He will be tested immediately if the test results come back positive and if negative, during the biopsy six months from now.

Owen will start acid reflux medicine and after 6 months of being on it the doctor will determine if and when he can be taken off the medicine.