So the results from biopsies the came back! AND they found that she has congenital sucrase-isomaltase deficiency. :( It is supposedly hereditary but hard to diagnose. At primaries their average diagnosis is about 2-3 kids a year. It is where your body is missing the enzymes to help digest sugar and starch. So sadly for us we have to try our hardest to put her on a diet without any sugar and starch. This could be really difficult because sugar and starch are in everything. The nice thing is there is a medicine that will help her digest sugar when she eats it. We sure hope it helps and hope we can do it. Maybe it could be good for Matt and I also! She will never grow out of it but sometimes it can get a little better! We sure hope so! We have an apt. with a dietitian on Monday so hopefully she can give us some tips and maybe give us some SWEET recipes!
Friday, April 18, 2008
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13 comments:
Hooray! I'm so glad you guys were able to find out what was causing that for her. I hope everything works well for her and gets easier for you guys too! Good luck!
Wow thats not fun.. I really like the book By Jessica Seinfield deceptivly delicous its a good cook book.. To help kids eat healthy, check it out..
I'm glad you guys know what is wrong now. That's too bad she can't have sugar and starch. Love you guys!
I'm excited that you now have a diagnosis and can start treating the problem, although I'm sorry it will be something that is going to be pretty tough to know how to work around. Good luck with finding recipes, I'll keep my eye out for you.
Is this the same thing as spru? That thing that most of Aubrey's fam has? I think it's called ciliacs?? Is this near the same thing? My nephew has that..
well, that is so good you were able to find the problem...and yes I'm sure that is hard trying to eliminate those things from her diet. I swear I need someone to tell me I can't have sugar:) I hope the dietitian is able to make it less complicated for you!!!
Wow that's rough! But I bet it's nice to finally know what is going on with the little sweetie and hopefully get her feeling better though. Cute new pictures, I love the one on her little chair, she really is way too cute!
I am glad you found out what was wrong- But I just wish it was something a little easier for you guys. We will be praying for you.
so glad that u figured our what was wrong. There is nothing worse than having a sick kid and to top it off-espescially when no one knows what is wrong.
My mom told me that Matt called Janice about Kinli's baptism. Thanks so mcuh for sharing in our excitement! We didn't invite the whole fam cause then there would have been a million people at the party. So-I only had the immediate fam. Thanks so much for being excited for us! We love you lots!
Ah, I'm so glad that everything is ok. That doesn't sound like too much fun though. Hopefully they can give you guys some great advice when you meet with the nutritionist. Hope to see you guys Tuesday, love ya!
That does not sound like much fun, I would have a hard time keeping my kids away from Sugar good luck finding good recipes. Let me know if you need anything. At least you know what is wrong. Good Luck :)
Oh I am so glad you guys finally know what the issue was. Poor little Hadlee. By the way how are you feeling?
I am glad that you atleast know what is going on with her. I remember when we didn't know what was wrong with Aidan, it was so frustrating. Luckily, knowing is half the battle. :) Good luck with the recipes. I am sure the dietician can help!
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