Makily is doing okay with the new med change. We are only doing 1.5 pills in the morning and two at night. She's on the apnea monitor at night and so if she has any episodes it will go off.
Mrs. Leslie at school has told me on several occasions here and there that Makily went nearly all day without a wet diaper. I noticed one day last week that she had only peed minimally and then the next day Mrs. Leslie said she hadn't peed that day at all. We have not decreased the amount she is eating at all. I can't give her extra free water because she can't tolerate the extra volume in her stomach. She starts retching. So I called Dr. Pierre and we have a consult with Nephrology for June. Emanuel Syndrome children can have kidney problems so we figured we would be safe then sorry. She had a renal ultrasound when she was in the NICU and they said it was okay but I really don't trust ANYTHING that Shands told me back then. We'll see.
Maybe she is just learning to hold her urine. I don't know.
Thursday, May 14, 2009
All is well.
Posted by Patyrish at 5/14/2009 05:09:00 PM
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5 comments:
I'm so glad her medicine is doing well so far.
Glad to hear the medicine is working for Makily...and I'll be praying that she is learning to hold her urine!
Apparently you never have a dull moment huh? Haha. Well, glad Doodles has her meds under control, but hoping that she's just learning to hold it...wouldn't be good if she has kidney problems, I'll say some prayers.
Love, Sami
samisjourney.blogspot.com
urinary retention can be an infrequent side effect of topamax..
A group I joined of people and families of people feeding blenderized foods by tube taught me that even if there are volume issues, you can still get more water in. But you have to give it before feedings - when nothing else is in the stomach, the water leaves the stomach very quickly. Like you can give water and check residual and find almost nothing in the stomach (except maybe mucus-y stuff - that doesn't look clear and watery ... like water) after 30 minutes, sometimes less.
As you know, if you give more water when you are giving something else (like formula) it's only going to increase the volume, and you say she can't tolerate that.
I feel like I know so little, but I seem to have figured out that they are right about the water clearing out so fast.
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