Tuesday, June 23, 2009

Hunger strike?

Well our little pumpkin is deciding she doesn't want to eat much lately and we are not sure what the cause is. She has also been sleeping a lot more and either pulling on her ears, or the back of her head on the left side, and getting upset easily. We have no idea if the extra sleep and getting upset so easily is due to coming off the meds, or what the deal is. She started all of this on Sunday, and is either not nursing, taking a bottle, or eating her solids (any combination of those).

Let's see on Sunday, she had a total of 10 oz of my milk in a bottle, nursed for 2 minutes, and had a total of 1 jar of solids. Monday, 6 oz of my milk in a bottle, nursed for around 10 minutes, and 1/2 jar of solids. We are still working on today, so I won't post those stats. Hmm...this is odd to say the least since she is such a good eater. Matt called the pediatrician yesterday and they had us come on in...

...well, we visited the pediatrician (6/22), and everything looked normal, except for a red throat. We are hoping she just has a sore throat and that nothing more serious is going on. The ped's office contacted the neurology clinic, and they ordered some additional blood work to check her sugar and electrolytes and whatever else...this would let them know if her adrenal system was okay (the injections of ACTH causes the adrenal system to work harder and pump out more cortisol, so there was a possibility that her adrenal system was out of wack with recently coming off of the ACTH). Her labs were good..woohoo!! The neurologist also ordered an EEG for Kylie and that is scheduled for tomorrow at 9:30am.

Today I tried a sippy cup, and she got about 1/2 an ounce of pedialyte, but then she spit it back up. I think she only drank from the sippy cup because it was something new, and then she was quickly disappointed that it wasn't a new toy...just mom trying another avenue to getting some fluids down her. We tried a popsicle at lunch time, and she liked it for about 3 seconds, before deciding she didn't want that either. Oh, and we tried a syringe too..no way. At her 4pm feeding today I tried some of my milk in a cup and she drank about 3 oz (well, I'm sure at least 1/2 oz or more ended up down her chin), she was trying to chew on the cup most of the time, but also she kind of liked that she was getting some nourishment out of it..at least I liked that she did. So no idea what's going on right now, just praying it is nothing serious.

Our ped's office is having us call in and let them know what her intake is. We do pray that we don't have to get admitted to CM or anything like that to get fluids in her. Oh, baby girl you are so sweet and still smiling away, but how about a bottle so mom and dad can breathe a little easier.

3 comments:

Anonymous said...

Got my fingers crossed that you're dealing with no more than a sore throat bug. Hang in there.

Barb

baby trevor's mommy said...

So here's my two vetern cents...

I've heard many post ACTH parents (myself included) note the same exact thing. While the doctors won't officially link it...I think most IS parents would. And I certainly would.

Now every child is different...and in Trevy's case he eventually did start eating again. Our pediatrician said it was probably his body's natural response to the weight gain...and he was just recalibrating. Which I was okay with...as long as he had enough diapers. But he weighed exactly 24lbs for 10 months! And our neuro actually had referred us to see a GI doctor...when we had to do a second round of ACTH. And well...he puffed up again! The second time around he didn't have the eating issues after the wean.

I have also heard of children who do need medical intervention.

And I wouldn't let your pedi make you feel like you should just blow it off. Follow your mommy gut...

Easier said than done...I know. *smile*

Hope she's having a fabulous seizure free tummy filled day!

((((((((hugs))))))))

...danielle

MJStump said...

Danielle,

Our pediatrician's office is absolutely amazing so they are totally following up with thing and have been calling us to see how things are going. So that is never a worry for us...we are blessed with such great doctors that are very in tune to how Kylie is doing and really care about her.

Thanks for letting me know about this seeming to be somewhat normal, we have no idea, so it is comforting.

You are more than welcome to add Kylie's blog to Trevor's.

Thanks again ;)

 

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