After this meeting my GP (who is another mum at school) asked me to come in and see her. Seeing Olivia a whole head shorter than the rest of her class made her a bit worried and she wanted to further investigate her failure to thrive. Failure to thrive means you can't grow. Olivia was first diagnosed with failure to thrive at 12 months. She had bone scans, thyroid tests (two now), and has been given high calorie diets. Discovering her kidney problems at 15 months and then her gastro problems at 6 years old seemed to be the answer; but now that her urologist has discharged her, and her Gastroentologist is about to discharge her (next apt. in 3 weeks) she has only gone from 'not on the growth charts--to the 5% on the growth charts'. Which only means she is now disqualified from growth hormones (because she is technically on the charts).
Dr. Chan ordered some blood tests and then called me in. Olivia is off the charts for Coeliac Serology which is bad. Celiac disease is an auto immune disease in your intestines. In Olivia's case she can't break down gluten which means it has never been absorbed it has just been clogging her up....how this was not detected YEARS ago is beyond me! This also explains her inability to break down food and having it backed up in her large intestines--so we are finding a cause to a cause maybe. We have to go into the hospital and do a procedure where they stick a tube down Olivia's throat and into her stomach. They will do a biopsy on 4 intestinal samples--keep you posted. I will meet with the gastroentologist in 3 weeks (and probably NOT be discharged, but at least we are making some progress). We are looking into where this might be coming from--any family members with a problem? Speak up now!--it is hereditary, although only 1 in 30 people with it will manifest symptoms :) As for me, I will be having to re-learn how to grocery shop and cook because EVERYTHING has gluten in it!
Ps. Hats off to Australia--they have been the only ones to figure Little Olivia out! I was on the brink of getting referred to a pediatric endocrinologist (dr.'s who help kids grow). We were doing a standard blood test for our referral letter when we found this!
12 comments:
Hope everything works out somehow! You're in our prayers, Olivia!
So happy that progress is being made. Good thing we have Oatmeal, Rice Krispies, Corn Pops, Corn Chips, Corn Tortillas, all kinds of Rice, Veggies, Fruit, Dairy and Meat etc. Good Luck! You are an awesome mom and darling Olivia has been very cooperative with whatever it takes. Love you.
That's great that you have found something concrete to help Olivia (although painful on the cooking and buying end). It's funny - eating no gluten food is such a trend now, that it's almost funny to realize that it's not just a fad, but an actual, real disease. I actually remember meeting the president of the celiac club at BYU, and never having heard of it before. The nice thing is, you get to profit off of the trend - everything is so nicely labeled now with wheat information.
makes me mad they JUST found that out. It's not that uncommon of a thing. You guys are going to be so healthy with your gluten free diet :) Good luck with everything! And had to say her baptism dress/beach pics are super cute. She is a beautiful girl. I can't believe she is 8--I still remember coming to the hopsital when she was born. Crazy how life passes.
One of my good friend's husband has celiac disease. It manifested first while he was on his mission, and it took over a year for them to diagnose it.
He has to be super careful. Eating out is really tricky, because if anything with gluten even touched the utensils the food was prepared with, he gets really sick. When we would have them over to eat, she would just email a recipe that he could handle.
Anyway, I'm so sorry that your daughter has it! But at least you know now what it is! I can put you in touch with my friend if you need.
Oh my goodness. I love that little girl. She has been through so much. It breaks my heart to think of all the tests she has had and how many times she has been poked at. I am sorry to hear her new diagnosis, but what a blessing to finally know what is going on. I hope that this is the end of Olivia's medical problems. I can't imagine how hard it must be for you to completely change your whole families lifestyle as well. You guys have been a huge support to our family and to Amelia. Please let us know if we can do anything for you and go Australia. What a blessing that you moved there. Love you guys!
WOW...can't believe it has taken this long to figure that out. But so glad you have some answers! It's a pain to go gluten free but now a days so many people are that I'm sure you'll have lots of support! You're in our prayers!
What a bummer, but glad you are finally getting answers. Hopefully, she'll be much better on a new diet.
This is great news!! I'm so happy they were able to figure things out!
I'm happy that they were able to figure things out and now you know what to focus on!! I'm so impressed with you guys- you are all amazing!!!!
My heck that girl has had about enough hasn't she? Poor thing. I am sure you are glad to know what is going on. I agree with some of the others...seems like they should have figured it out sooner!
Good luck with the gluten free!!!
Our sweet little Olivia has had to endure so much. There are many foodstuff on the market which are gluten free (breads, pancake mixes, noodles, rice, cereals).The doctor should be able to give you guidelines as to what she can and cannot eat or tolerate. Don't forget the Internet and the library for research.
Alisha, you are such an excellent Mom on keeping abreast of what is going on with your child and doing the right thing for her. Both you and Stan are outstanding.
We continue to pray for you all, especially Olivia, and for guidance in the right direction when doing your research. At times being a Mom can be heartwrenching when our child hurts. Our heavenly Father, as in the past, will help you get through this time also.
You are all loved so much!
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