Wow is all I can say about the past few days. Well, going on a week now.
We switched to Augmentin to clear out the nasty bacterial infection and it won. Totally won. All green goo gone, sleeping well, reasonable and rational behavior (for a 5 yr old) ... I almost forgot how much fun this kid is!!
Then has come the strangest thing of all. She is totally unconcerned about food. She has turned down/put off meals and snacks. She can suddenly go a long time between meals/snacks with no problem.
Let me attempt to put this into perspective. When ill with infection Ayden Jane struggles with PWS in ways that many kids struggle on a daily basis. The biggest of these is food. She is hungry, a lot. She cannot walk past food without it calling to her and convincing her she should have something. She may even sneak food because she just cannot resist. She will ask for things she does not typically eat and be really hopeful that today the answer will be yes.
On the amoxicillin when the infection was calmed but still surviving somewhat, AJ was better. She would not ever turn down food but was not preoccupied with it. You could see her feel the pang of wanting something when others were eating or she saw something, but she could handle a reminder that she had just finished hers... and move on.
The past week after (In my opinion) the Augmentin finally killed the infection totally, food is a total non issue. If you have a child with PWS, you know how remarkable this phrase is. Ayden Jane has turned down food in order to go play. I will give Saturday as an example of how extreme I am talking. We had breakfast around 8:30. At 10:30 we headed out of town to Mckenna's soccer tournament 3 hours away. AJ asked if I would pack a snack of nuts for her. I figured she would eat them as soon as we got in the car because that is typical. Bringing snacks can be tricky. Often I need to bring them because I need to be sure there is something she can eat, but when she knows I have them and gets bored, she wants to eat them all. She told me just to put them in the cooler in the back because she didn't need them. Jaw drop.
About 1:30 we stopped about a mile from the field to potty and get some water. Ayden Jane has still not touched her snack! I saw bananas and decided to see what she would do. AJ LOVES bananas and they are a big treat. We got one and she offered me half. I was again stunned. We got to the field and with no lunch and only a 1/2 of a banana since 8:30 she asked if she could go play on the playground before she had her snack!!! She did finally eat her small snack of nuts at 2:30.
We had dinner about 5:30 and there was no whining or concern or asking for food. Nothing after supper and no mention of it. Yep. That's the way its been for about a week now.
Times like these I just wish I could see inside of that little body. Such a dramatic difference in just a couple weeks. What is working so smoothly now that wasn't before?? How do I keep it going?? How could it help other kids with PWS???
We switched to Augmentin to clear out the nasty bacterial infection and it won. Totally won. All green goo gone, sleeping well, reasonable and rational behavior (for a 5 yr old) ... I almost forgot how much fun this kid is!!
Then has come the strangest thing of all. She is totally unconcerned about food. She has turned down/put off meals and snacks. She can suddenly go a long time between meals/snacks with no problem.
Let me attempt to put this into perspective. When ill with infection Ayden Jane struggles with PWS in ways that many kids struggle on a daily basis. The biggest of these is food. She is hungry, a lot. She cannot walk past food without it calling to her and convincing her she should have something. She may even sneak food because she just cannot resist. She will ask for things she does not typically eat and be really hopeful that today the answer will be yes.
On the amoxicillin when the infection was calmed but still surviving somewhat, AJ was better. She would not ever turn down food but was not preoccupied with it. You could see her feel the pang of wanting something when others were eating or she saw something, but she could handle a reminder that she had just finished hers... and move on.
The past week after (In my opinion) the Augmentin finally killed the infection totally, food is a total non issue. If you have a child with PWS, you know how remarkable this phrase is. Ayden Jane has turned down food in order to go play. I will give Saturday as an example of how extreme I am talking. We had breakfast around 8:30. At 10:30 we headed out of town to Mckenna's soccer tournament 3 hours away. AJ asked if I would pack a snack of nuts for her. I figured she would eat them as soon as we got in the car because that is typical. Bringing snacks can be tricky. Often I need to bring them because I need to be sure there is something she can eat, but when she knows I have them and gets bored, she wants to eat them all. She told me just to put them in the cooler in the back because she didn't need them. Jaw drop.
About 1:30 we stopped about a mile from the field to potty and get some water. Ayden Jane has still not touched her snack! I saw bananas and decided to see what she would do. AJ LOVES bananas and they are a big treat. We got one and she offered me half. I was again stunned. We got to the field and with no lunch and only a 1/2 of a banana since 8:30 she asked if she could go play on the playground before she had her snack!!! She did finally eat her small snack of nuts at 2:30.
We had dinner about 5:30 and there was no whining or concern or asking for food. Nothing after supper and no mention of it. Yep. That's the way its been for about a week now.
Times like these I just wish I could see inside of that little body. Such a dramatic difference in just a couple weeks. What is working so smoothly now that wasn't before?? How do I keep it going?? How could it help other kids with PWS???
What a difference!! It's times like that that it *would* be good to know what is going on and why is she suddenly not caring about food? Did you see the conversation going on on FB somewhere a few weeks ago about our kids' guts and immune responses and how it changes their relationship with food? Multiple people are noticing this. I think there's something to it...
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