Daughter's hospitalizations

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rorri Posted: Tue, May 12 2009 11:15 AM

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Hi,

I'm new to these boards.
I have a 15 yo daughter who was dx'd when she was 5. 
She has been in ICU 4 times this year, which, obviously, is not good.
We almost lost her in January and in February it was actually worse.
They actually Baker Acted her in February using "diabulimia" as the reason.
Here's the thing, she doesn't miss her lantus at all or her humalog. 
We want her on the pump but she doesn't want it at all.  She still hates the fact that she has diabetes and she never wants anybody to know.

She was just in last week for another upper GI and endoscopy bc of GERD and gastroparesis.  They now think "hyper sensitive" stomach as well and possibly gall bladder issues.  She throws up a lot bc of the pain she is in from her stomach(which has been going on since October of last year) and yet nothing is helping her except for when she had some pain meds that took the pain away completely.(but keeping her on pain meds wouldn't be wise...especially with the stomach issues and also on how addicting they can be).

The thing with her, actually, since January, is that her bgl's will not be above 130 and she still has high ketones.  The smell of acidocis on her breath is overwhelming.  Then, after her 9pm lantus shot, her bgl will soar...sometimes above 600, others just below it.  By the time we have gotten her in the past two times her bi-carb was 7 and then 8.  The lowest was less than 2 with a pH of less than 6.7 and her body temp(in Feb) went to 91.2 degrees.  She goes so fast it's scary. 

She's getting frustrated bc nobody has answers for her.  All it takes for her to go into DKA is vomitting and/or diarrhea and it happens so fast...all because of this pain.
She's had xrays, MRI's, cat scans, gastric emptying, bloodwork(obviously)...and still no solid answers.
She's home schooling right now bc she was so sick she missed too much school.

Basically, I am at wit's end here w/ the stress of almost losing her and the fear of it happening again.

Her A1c is DOWN to 10.3(from 15.5).  Before puberty she had pretty good A1c's...lowest being 6.1 and the highest being 8.8. 

Sorry for rambling!

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Spirit replied on Tue, May 12 2009 5:56 PM

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rorri:  I am not familair with diabetes in children and I have no answers at all for your daughter's situation. 

I just wanted you to know that if you want to come here and ramble or vent, please feel free.  How awful it must be for all of you! 

Is there a teen diabetes group your daughter could join?  Or a cyber one?  Hearing others' experiences about the pump may be helpful for her. 

Or perhaps other pumpers from this board might chime in.  Please be a bit patient with this board; we've undergone some techno changes and there still seem to be some bugs to work out.  Check back often.

In the meantime, how are you handling all of this pressure?  I have a daughter, too, and when she hurts, I hurt.  Take care of yourself as well during all of this. 

Spirit

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jen1229 replied on Tue, May 12 2009 7:48 PM

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Hi rorri:

I don't have any anwers for you either, but I want to echo what Spirit said.  We are a good group here and welcome all comers.  We will listen toyou vent and empathize with you. 

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Debbie Butler replied on Wed, May 13 2009 4:11 PM

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It sounds like you have been through so much and that things have been very stressful. I am glad you have found these discussion boards and that other individuals have been replying. I work with a lot of teenagers and their parents who are struggling with diabetes burnout and frustrations as well.  As you have found out, it can be very challenging to manage blood sugars during adolescence.  What I often suggest is that the parent(s) ask the teen if they can take over all or some diabetes management tasks for a set amount of time to give the teen a break.  Would your daughter let you give her all her injections and check her blood sugar? Would she let you help with anything else? Also you mentioned that your daughter is not interested in the pump.  If your teen is not interested in the pump I would not pressure her. The pump is a great piece of technology and at some point in the future she may be interested in the pump, but if she has a bad experience on the pump now she may never be willing to try it again.  Also switching to the pump does not guarantee that it will bring her blood sugars down.  Good luck!  I hope that her A1c continues to decrease and that things become less stressful for both of you.

-Debbie Butler, LICSW, CDE