Andy had mentioned Maggie's thumbs and hands acting funny. My mind after seeing this began racing to all the places it shouldn't. However, yesterday after doing a blood test, they found that Maggie's calcium level was very low. We read that low calcium can create numbness and tingling in your hands and feet. So, we think this might have been the reason why she was acting this way. Thankfully in the evening her thumbs were back to normal, though today she is still a little low, but not dangerously low.
So, now, for the next 3-4 weeks, we will be carrying a bag with us wherever we go. To begin with, Maggie will be hooked up to 24 hour "feeds." By next week they will try to bring it down to 18 and then eventually only overnight. They will measure Maggie's weight, height, and her pre-albumin (a measurement of protein and your body's overall nutrition). When her pre-albumin has been above 20 for sometime (it is currently at 17) they will take her off.
I don't see this as a solution, but only a temporary treatment to bring her nutrition up. I have a feeling we will be dealing with diarrhea until the end of treatment. We need to just maintain her nutrition and hydration until that time. And though TPN can be harsh on the liver, we think it's the best option for her, as we can already see a difference in her attitude. Now hopefully we'll see Maggie start growing and the diarrhea subside.
6 comments:
Well this sounds good. I'm happy to hear that she is feeling a little better. I'm sure that brings a little relief to your system. We had fun with you guys the other night, as I'm sure you got your workout in :) Hang in there. We are praying everyday for you all. Jess
Glad to hear Maggie's spirits were up. I'm also glad you were able to figure out about the hands and thumbs. Tell Maggie that I will show her my "trick" next time I see her. With no thyroid, I struggle with my calcium levels, and when I tap my hand to my cheek, my lip twitches. I'm the only one in the family with the "problem," and they all think is it's hilarious.
yay for TPN!
Don't feel too bad about TPN being hard on the liver. Though TPN has risks to it, keeping a child's nutrition up produces better outcomes for her with her disease!
I'm sure you are totally sick of hearing people's suggestions.... but does she eat (when eating) applesauce, oatmeal, bananas, rice, even marshmallows! Those are all supposed to "help" form stools to some extent.
Also, I was reading about probiotics. I don't know much about this w/ kids, so you'd have to ask your doctor/RD. One probiotic called VSL #3 has been shown to help w/ chemo-induced diarrhea. (I think its been studied in kids too) Here was one article - http://www.medscape.com/viewarticle/587386
I'm just not sure about dosage for a young child. Might be worth exploring????
With some probiotic I give my kids when they take antibiotics, I break open the capsule and pour it into their drink/yogurt/applesauce.
This might be a dumb question - have they given her an anti-motility medication to slow down the diarrhea. I know that is another method of lessening chemo-related diarrhea.
HTH. Sorry if these were all annoying suggestions to add to your "we're sick of people asking us dumb questions and giving us dumb suggestions list". I'll keep waiting for an excellent non-diarrhea report!!! One of these days, right? :) :)
This is GREAT news! So happy to hear a good report, and that Maggie seems like her old self. AWESOME!
Thinking of you all,
Monica Miyashita
You wondered if the TPN could work that fast.
For what it's worth, I have plenty of experience of what it feels like to live on the knife edge of hunger. I.e., carefully counting how many calories I need to stave off uncontrollable hunger but also allow me to lose a little weight, however slowly.
And I can tell you that just a few calories over or under that line can make a huge difference not only in how you feel physically but also psychologically.
Clearly, Maggie's body has not been getting the nourishment she needs. And so I'm guessing that pushing her even a little closer to satisfying that need could make a big difference in how she feels and thus in her behavior.
I hope you continue to see improvement in all ways with the TPN!!
Love and prayers always,
Great Aunt Phyllis
Seeing Maggie happy and playful must make you feel so good! I so hope it lasts!
Hoping you have/had a good weekend and were able to get outside and enjoy the weather with your sweet Maggie.
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