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.
Tuesday, November 23, 2010
Monday, November 22, 2010
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.
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.
Saturday, November 13, 2010
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.
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???
Thursday, November 11, 2010
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.
“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.
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