Hello!
Caitlin is doing much better lately! Eating is still off, however, I notice the 'junk food' seems to go down just fine so I guess I won't worry too much. Still is pooping good too so yay for that! I'm going to stick with 1/2 cap of miralax every other day....more than that is just too much for her. I don't want to fear putting white shorts on her! LOL! Anyway....I always love when I can beat the system, lol. I got an email yesterday that her test results loaded into the online system...these were from July 31, two weeks old data. Well, hadn't heard anything from the doctors about them so I checked them out and her depakote was a bit low. There is a function where you can chart or graph data from that test result...just need to click on the button. So I did that just so I could see all her depakote values over time....and it pulled ALL the data including the newest from one week ago and yesterdays draw!! So COOL!!! This means I don't HAVE to wait 2 weeks or call around to get the info, just log in, look at an older date and click chart/graph and it will pull ALL the data including the newest results even though they are not supposed to load non-system doctors until 2 weeks after the fact. YAY!! Even better, last week she said she felt 'shaky' two different times. Both times she was not observed to be seizuring but in the past when she has said that she typically would have a big one shortly after. Well, after seeing last weeks depakote level, it explains that! It was down to 72 last week! Her happy range is in the 80-90's. I had suspected the depakote was off when she told us that and was debating calling neuro and asking to go up on her evening dose but now seeing that yesterday's depakote level was 81, I am glad I don't have to call. And she has seemed much better this week so that explains it all. I am thinking it was just adjusting yet to going up and down on all the meds. Hopefully it has evened out and will remain in the proper range, and I am so glad that I have a way to easily monitor those ups and downs. She is also now halfway off of the topamax, and have not had ANY psycho rages since getting to the halfway point! I KNEW it was the cause of the behavior issues. It was just like with the keppra rage she had on keppra. She had early PT this morning and did great! PT said this was the hardest C worked in a long time. I was glad to hear it. I am glad things are leveling out and she can start school on a good note this year! Excited to be getting her new AFO's next week, hoping I can find 'off the shelf' shoes to go over them. We had good luck last yr at payless, they have a lot of wide shoes there. Gotta go work on piano with Tyler, that is a whole 'nother struggle....
Lisa O.
Caitlin is doing much better lately! Eating is still off, however, I notice the 'junk food' seems to go down just fine so I guess I won't worry too much. Still is pooping good too so yay for that! I'm going to stick with 1/2 cap of miralax every other day....more than that is just too much for her. I don't want to fear putting white shorts on her! LOL! Anyway....I always love when I can beat the system, lol. I got an email yesterday that her test results loaded into the online system...these were from July 31, two weeks old data. Well, hadn't heard anything from the doctors about them so I checked them out and her depakote was a bit low. There is a function where you can chart or graph data from that test result...just need to click on the button. So I did that just so I could see all her depakote values over time....and it pulled ALL the data including the newest from one week ago and yesterdays draw!! So COOL!!! This means I don't HAVE to wait 2 weeks or call around to get the info, just log in, look at an older date and click chart/graph and it will pull ALL the data including the newest results even though they are not supposed to load non-system doctors until 2 weeks after the fact. YAY!! Even better, last week she said she felt 'shaky' two different times. Both times she was not observed to be seizuring but in the past when she has said that she typically would have a big one shortly after. Well, after seeing last weeks depakote level, it explains that! It was down to 72 last week! Her happy range is in the 80-90's. I had suspected the depakote was off when she told us that and was debating calling neuro and asking to go up on her evening dose but now seeing that yesterday's depakote level was 81, I am glad I don't have to call. And she has seemed much better this week so that explains it all. I am thinking it was just adjusting yet to going up and down on all the meds. Hopefully it has evened out and will remain in the proper range, and I am so glad that I have a way to easily monitor those ups and downs. She is also now halfway off of the topamax, and have not had ANY psycho rages since getting to the halfway point! I KNEW it was the cause of the behavior issues. It was just like with the keppra rage she had on keppra. She had early PT this morning and did great! PT said this was the hardest C worked in a long time. I was glad to hear it. I am glad things are leveling out and she can start school on a good note this year! Excited to be getting her new AFO's next week, hoping I can find 'off the shelf' shoes to go over them. We had good luck last yr at payless, they have a lot of wide shoes there. Gotta go work on piano with Tyler, that is a whole 'nother struggle....
Lisa O.
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