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Old 10-14-2008, 09:18 PM   #1
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Join Date: Nov 2004
Location: Central Wisconsin
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Brenygirl HB User
Post Juvenile T1, some questions & mostly venting I guess...

Hi (Sorry this is so long, I am just so frustrated tonight) my daughter was diagnosed at the age of 9 in January of this year. We just got her on the pump. It seems to work so well, BUT she is a wild sleeper & kinked her pump twice. The first time we caught it. But Monday morning I got her ready for school & took her to school to update the nurse on the pump. She was high but they told me to get concerned if she had a BG of 350 or over for no reason. She was just at 300 and she said she thought she remembered getting up & eating a snack. Once in awhile she will not remember what she does if she is not fully awake so I did not think much of it. Programmed the pump for a correction & off we went.

We got to school & she was soooooo crabby! The nurse and I checked & her BG had gone up but it was not near 350. The nurse suggested I take her home & check keytones. They were high! I called our doctors nurse & she helped me get her nursed back to health over the phone. It took all day & my daughter was so drained. I stayed up all last night & checked her BG every 2 hours. Its so sad to see them so healthy & then all of a sudden so sick.

When my daughters BG gets high she gets so crabby. The mood swings get to me but the best thing I found to control them is to do a correction. Usually within 10 - 15 min she is smiling and happy. Her mood swings get very bad...mostly she gets so angry when her bg is high. Has anyone else experienced these? I was visiting my dad & my dad told me it was an act! I know its not an act or she would not turn into her normal sweet self once her insulin starts working. I found a couple articles about mood swings with diabetes, they are ok articles, I wish I could find a really good article about it, but there doesnt seem to be anything out there devoted to that topic alone. I am going to print the article and highlight the pertinent parts & give it to my dad. I know all ready he will say that she has to learn to control herself . GRRR! But maybe just maybe he might gain a bit of understanding to what she goes through by reading them. I could always hope

I get so frustrated with people in general when it comes to her diabetes. Some of the people at my work do not understand when I have to take off to go to her doctor appointments, or she gets sick. I have also noticed that she gets sick easier since being diagnosed. I am trying not to let these things get to me but sometimes I just want to crawl in a hole.

I am joinging a local support group for parents. I wish they had a local support group for kids themselves with diabetes. I think that would be great in helping them discuss what they are going thru & their feelings with others who are going thru the same thing.

Thanks for reading. I would love to hear other peoples experiences & or what helps them with coping. Again I am sorry this is so long.

Brenygirl

 
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Old 10-14-2008, 10:29 PM   #2
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Join Date: Mar 2008
Location: CA, USA
Posts: 576
Wallis86 HB User
Re: Juvenile T1, some questions & mostly venting I guess...

It's very common to have mood swings, especially irritability with high blood sugar.

You might look into the pajamas that have the pump pocket build in. This will prevent some of those nighttime cord kinks. You can also use the pump "belt". But there are lots of products for kids to use at night.

When your daughter's BG is over 350 for more than a couple hours, you should always change the pump site to avoid DKA. YOu're better off wasting a pump set than waiting it out for too long, repeatedly bolusing with no effect.

There ARE support groups for kids. I work at diabetes camp in CA. The kids love it, love spending time with kids like them. Most of the counselors are T1 also. You might find kids penpal programs or something through the JDRF or the Diabetic Youth Foundation or program like that near you. I DEFINITELY suggest diabetes camp, though. It is a great experience for the kids, teaches diabetes management, independence, and creates GREAT friends who have the same experiences. THey have them all over the country.

 
Old 10-16-2008, 10:31 PM   #3
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Join Date: Nov 2004
Location: Central Wisconsin
Posts: 211
Brenygirl HB User
Re: Juvenile T1, some questions & mostly venting I guess...

Hi thanks for writing. We did suggest her going to Diabetes camp this year but she was 9 at the time and just not ready to leave home for a week. Her first diabetes educator that she had before going to Childrens to the Endo called & said her daughter was going to be a counselor and she wanted my daughter to meet her ahead of time and that way she would feel comfortable going and have someone there that she knew. Well she didnt want to go. We decided it would be best if we wait and maybe next year she will feel more comfortable going.

We didnt make the support group tonight. She was not feeling well & was home from school today. Thanks for the ideas for the pajamas. I will look into them when we have some extra cash. Hubby is working 2 jobs right now as it is to make up for the time I have to take off work when she is sick.

 
Old 10-16-2008, 10:46 PM   #4
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Join Date: Mar 2008
Location: CA, USA
Posts: 576
Wallis86 HB User
Re: Juvenile T1, some questions & mostly venting I guess...

The other thing you could do is literally sew a pocket into the inside of the PJ top or bottom out of spare fabric, maybe with a velcro closure. It would probably work fine. I'd just sew it into a location that isn't where your daughter lies to sleep, ie. if she's a stomach sleeper, maybe sew it into the back or side instead of the front.

 
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