Izzy has not improved with the new med. She may actually be
doing worse. It is so hard to tell. She is still not eating. She
feels full frequently. She is in a lot of pain pretty much
constantly. So, basically, since the end of the school year, Izzy
has not been eating at least 2 meals out of her day. She's not even
finishing ice cream and hasn't been since May (I think).
Last week, she went days without eating anything, so we had to do something. Unfortunately, Izzy's gastroenterologist was out of town, so Izzy ended up at the primary care doctor. Our fears were confirmed: Izzy had lost 3 pounds--10% of her body weight--in three weeks! Do you know how long it takes for us to get Izzy to even gain a pound?????? Losing three pounds in three weeks is crazy!!!!!!! And she is carrying extra water weight, so she has lost even more.
Primary care doc ran all kinds of tests and everything came back basically clean. Izzy did have an ear infection, but that didn't explain anything. She was started on an antibiotic for the ear, but that was it.
Inexplicably, Izzy seemed to do better the next two days. She actually ate like an Izzy (not as much as a typical six year old would eat, but better than Izzy had been eating). I was so excited, thinking that maybe Izzy had a GI infection that was being helped by the antibiotics for the ear. But, after two days, she wasn't eating again--leaving almost entirely full cups of ice cream untouched. It is heartbreaking to watch her want to eat and then she can't. She is in so much pain and just lays her head on the table during meal times.
Thankfully, Izzy saw her gastroenterologist today. We love him!! Unfortunately, his answer was that he had to think. This was too complicated. One of the reasons that we love him is because he is honest. He wants to do what is best for Izzy without needlessly putting her through procedures. So, he is thinking. In the meantime, Izzy will get an ultrasound of her belly tomorrow. Dr. Gebara wants to rule out ascites (build-up of fluid in the space between the lining of the abdomen and abdominal organs) and see what else may be going on. Once he gets those results and has thought more, we will formulate more of a plan.
I'm hoping Dr. G finds something that is easy to fix so Izzy can eat again (and stop vomiting--she vomited at least 3 times on the way to see Dr. G just this morning). She doesn't need to eat as much as a typical kid her size, just eat like an Izzy. If you've ever seen Izzy eat, you would know how weird it is that I am wishing she would just return to her prior baseline. She really can't afford to lose any more weight. She simply doesn't have any to lose.
While we wait, Dale and I are trying everything we can to get Izzy to eat. This weekend, she only had to eat a couple bites of her breakfast to get ice cream afterward. Tonight, she had the gluten free sweet and sour shrimp from Pei Wei. She didn't eat much, but she did eat a little. Whatever we can get into her, we are trying. (And no, she won't drink more than a sip or two of shakes, smoothies, or anything like that.)
No matter what she is going through though, she still has a smile. This pic is from both kids tonight.
Mel
Last week, she went days without eating anything, so we had to do something. Unfortunately, Izzy's gastroenterologist was out of town, so Izzy ended up at the primary care doctor. Our fears were confirmed: Izzy had lost 3 pounds--10% of her body weight--in three weeks! Do you know how long it takes for us to get Izzy to even gain a pound?????? Losing three pounds in three weeks is crazy!!!!!!! And she is carrying extra water weight, so she has lost even more.
Primary care doc ran all kinds of tests and everything came back basically clean. Izzy did have an ear infection, but that didn't explain anything. She was started on an antibiotic for the ear, but that was it.
Inexplicably, Izzy seemed to do better the next two days. She actually ate like an Izzy (not as much as a typical six year old would eat, but better than Izzy had been eating). I was so excited, thinking that maybe Izzy had a GI infection that was being helped by the antibiotics for the ear. But, after two days, she wasn't eating again--leaving almost entirely full cups of ice cream untouched. It is heartbreaking to watch her want to eat and then she can't. She is in so much pain and just lays her head on the table during meal times.
Thankfully, Izzy saw her gastroenterologist today. We love him!! Unfortunately, his answer was that he had to think. This was too complicated. One of the reasons that we love him is because he is honest. He wants to do what is best for Izzy without needlessly putting her through procedures. So, he is thinking. In the meantime, Izzy will get an ultrasound of her belly tomorrow. Dr. Gebara wants to rule out ascites (build-up of fluid in the space between the lining of the abdomen and abdominal organs) and see what else may be going on. Once he gets those results and has thought more, we will formulate more of a plan.
I'm hoping Dr. G finds something that is easy to fix so Izzy can eat again (and stop vomiting--she vomited at least 3 times on the way to see Dr. G just this morning). She doesn't need to eat as much as a typical kid her size, just eat like an Izzy. If you've ever seen Izzy eat, you would know how weird it is that I am wishing she would just return to her prior baseline. She really can't afford to lose any more weight. She simply doesn't have any to lose.
While we wait, Dale and I are trying everything we can to get Izzy to eat. This weekend, she only had to eat a couple bites of her breakfast to get ice cream afterward. Tonight, she had the gluten free sweet and sour shrimp from Pei Wei. She didn't eat much, but she did eat a little. Whatever we can get into her, we are trying. (And no, she won't drink more than a sip or two of shakes, smoothies, or anything like that.)
No matter what she is going through though, she still has a smile. This pic is from both kids tonight.
Mel
13 Message(s) from carepage
by June Spriggs
by Melody Vandee
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