We were suppose to get her test results within 4 days but after being home about an hour, Allie's nurse called with the results. To my surprise, Allie has a severe gastric emptying delay with solids. Her stomach is emptying at 16% only. It takes an average person 90 minutes to empty their stomach of solids and it takes Allie 317 minutes.
So, is this Allie's ultimate reason she doesn't eat, I don't think so but it definitely could be playing a roll in it. Since it takes Allie's stomach so long to empty her solid food, she always has a full belly and therefore never feels hungry.
Dr. Brown recommends we put Allie on Reglan to help her digest her solid foods. However, the possible side effects to that medication is too great for me to justify it. The side effects can be major and permanently life changing. An alternative medication is called Domperidone but it's not FDA approved in the United States. We can get it from Canada but since it's not FDA approved, insurance will not pay for it. There is also side effects to this medication but from my research so far, the side effects are not as severe as Reglan. There is one more medication out there called Erithyromicin that helps with stomach emptying, however Allie has been on that several times and it never helped her.
So, Matt and I need to make a decision and right now the only thing we agree on is that Reglan is not safe enough for our little Allie. I would like to try the Domperidon but Matt isn't comfortable with it not being FDA approved and with some of the side effects. So......once again, we need to make a tough decision and we are not at the decision point quite yet.
I'm very relieved to have finally heard that one of Allie's test came back abnormal. After so many years of normal test results, it's a relief to hear that something is abnormal. I know it sounds strange but all of the parents out there that continually are searching for a diagnosis will understand my thinking.
Now we have an abnormal test results and the options to fix the problem are somewhat risky. It's not what we were hoping for but it's a step in the right direction and I know things could be worse. So, we need to make a decision as to what our next step will be. In general, Allie is doing great and is continually her spunky self!!!!
Here are a couple pictures of Allie today at the hospital.
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| Allie with Mr. Balloony (the Tech made her this) |
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| Allie during her gastric emptying test with solids |
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| Another view of her gastric emptying test (this machine is a bit different than the one at CHW) |
Hey Lady,
ReplyDeleteI am glad at least you guys are aware of this now, even though we all kind of knew it was a good possibility. I want to talk to you about Domperidone, we are in Canada and Mason has the top GI specialist in Canada. He moved to BC Children's Hospital just over a year ago from Toronto Sick kids. This Dr. is ANCIENT, but he really knows tube feeding like no other Dr. we have heard of. It's all he does... takes care of complex tube fed kids. Domperidone is used out here for gastric emptying delays, but it seldom works and not more than a very short time. So just be aware, they aren't really using the drug for anything but producing Breast Milk anymore. Mason is on Cisapride, it is a stimulant and it can be hard on the heart. Mason's has his heart checked out every three months and so far so good. So good that he has just got approval to start a second stimulant, but for Mental Health reasons. I just wanted to give you my two cents and what our Dr. had told us about Domperidone. Since Mason has gone on a Stimulant (Cisapride) his oral intake has doubled, even with his aspiration issues he is doing well orally. I know every kids is different, it's a small victory in the scheme of things for us... but it is a victory non the less. Good luck Lady! And listen to your heart as you have been doing! Lots of Love, Dana
Have you looked into the connection between food allergies and intestinal paralysis?
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