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CarlyesHope

New Onset Diabetes at the age of 12

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CarlyesHope

Hi!

 

Please forgive me; I am a new to this forum because we, my family, my daughter, are new to diabetes. We were just diagnosed on Tuesday, March 8th, and after spending 4 days in the hospital we have been set free to contend with this on our own. Unfortunately, all I want to do is cry. You see, my daughter blames herself, she believe her life is ruined now. I see a once happy-go-lucky, not a care in the world child crying for the first time. I hear stories about schools that don't comply, I hear stories about how terrible low blood sugar is (hers right now is very high and has never been low) and I am so overwhelmed, and inundated with information that I don't know if I will ever see the light at the end of the tunnel.....Please tell me it gets better, please tell me they will accept it.....

 

Kelly

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gettingby

Hi Kelly,

First off, Welcome. It will get better :D . I have been battling this disease since I was 13 (I'm currently 33). I want to say that I believe that you have found the BEST place for support. Everyone on this site is either a diabetic or the caregiver of one. It won't be an easy road but I know that you and your family (esp your daughter) can make it through this. Times will be tough but that's why we are here. Ask any questions that you may have and we will happily answer them for you. We are all here to support each other. We are one big family. Feel free to PM or email me if I can help in any way. Hang in there. Everything will be ok. :D

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duck

I was diagnosed in 1990 during 11th grade exam week--Not a good time to get such news! And my Geometry teacher still made me sit the exam when classes started again for senior year!

 

If you weren't freaked out, something would be wrong. At some point, when you are ready, all of you will need to deal with this disease. Don't let it get to you, you can think of it as an excuse to embrace healthy living.

 

Find a support group in your area; I wish there were online forums back in the day for me. Things got a little better for me in college when I became acquainted with other diabetics in my junior year--It was relieving to know that other people were going through this crap as well, and were actually normal people and not some hormone-dependant freak like I thought I was...

 

It gets better. Life threw you a curve-ball, either you watch it sail by you, or you go down swinging. Whether or not you hit it is really up to you. Read EVERYTHING you can about this disease. There is a lot to know, and after a while it becomes second-nature. But at first you'll wonder how you're going to survive, and that's normal too.

 

A couple of things: Don't count on a cure. I've been hearing for as long as I've been diabetic how a cure is "just around the corner". It's not, and that sounds negative, but there are many treatments for this disease that makes life bearable. Second, READ READ and READ about this disease, I can't say it enough. Be supportive like anything else you did as a parent--You'll worry and worry, but that's part of being a parent. And don't let your daughter get down on herself. There's nothing she could have done about this, and there are at least 10 Million others who can commiserate with her.

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Belinda

WELCOME!!!!!!! I was the same age when I was diagnosed it wasn't easy then either. Her life is not ruined, friends will accept her and the schools have too take all students. I am not sure where you live but in the USA there is a section 504 that you must request from your principal. This in essence gives her the ability to carry her meter on her person if she so desires, leave class for extra bathroom breaks (high sugars cause frequent urination), snacks as needed and several other things. If the school is very understanding they will do these things without the paper work but if there is a problem then request one. I have a former student that is a freshman in high school that has one due to the fact that she stresses out during test and bs go through the roof, the 504 allows her to have more time and to not take the test if her BS is above a certain number because she does not focus well at that point.

 

You need to focus on one thing at a time. There is a tremendous amount of information when one becomes a diabetic.....take it in slowly, ask lots of questions, write them down due to the fact you may forget them by the time your next doctor visit comes around.

 

Just remind your daughter it wasn't anything she ate, drank or did. Someone above thinks she can handle it or as someone once told me...your only given what you can handle.

 

Teenage years are hard enough without all this "diabetes" stuff to add. She can do all that she did before but know she has to be aware of what she is doing and how her body is feeling and checking her blood sugars.

 

 

As if you didn't have enough to worry about....This is a wonderful place for support and advice. Just ask questions...someone here has probably experienced it along the way too. I have learned so much from the "forum family".

 

Welcome and you and your family will make it through this......

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duck

...Let me amend something I said...Maybe a cure is forthcoming, but don't count on it. You have to live with this disease with current treatment options and modalities, do not rely on a cure that may or may not be forthcoming. If this is cured tomorrow, hallelujah, but in the meantime I will check my blood sugars and use my insulin pump in order to protect my health.

 

I don't want to sound negative, and your daughter will be fine once she comes to terms with this.

 

BTW, welcome!

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Dewey

Hi Kelley, and welcome.

 

Duck, Bel and Cin all put it quite well...

 

I've had Type I Diabetes since 1982 (was diagnosed just before my 10th birthday, and just before moving to FL.). It is a hard road at times, but educating yourself (as you are doing here and elsewhere I'm sure) will benefit you and your family in countless ways. My mom used to attend local support groups and took me to the teaching hospital for checkups. To this day, she consistently reads about new innovations and other info. about the latest and greatest for folks like us. As Duck has said, I wish I had this forum when growing up (and am very grateful to have it now). Please know that it will get better (though it may take some time), and that we're here for you.

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CarlyesHope

Thanks for the support, I really feel like I need it right now. I feel like my whole life, which was once full of many different things is now occupied only with thoughts of diabetes and my daughter. Tomorrow she goes back to school for the first time since we found out, and it is taking all the energy I have not to go to the classes with her. Sending her off to kindergarten was easier, letting her stay home alone for the first time was easier, letting her baby-sit down the street until midnight was easier. At the same time, I have my own classes to attend, how will I ever concentrate???

 

The Doctors told us that her bs is too high - still usually in the 400 range, so he is increasing the lantus (spelling??)(long lasting) to try and induce a "crash" to bring her bs down to below 120, however, they don't know exactly how she will respond and the "crash" could be a very low one 50-60 bs range. well, she has never experienced this, so she doesn't know the signs or symptoms, sure we told her what they are, but she doesn't know how they feel and this makes me very, very nervous.... have any of you have dangerous, unexpected lows? How about your first time lows? How did you handle them?? The Drs. say the lows are worse then the highs. One more thing, you all mention the pumps, but our dr. says they are not that great just yet, what are your thoughts??

 

Kelly

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am1977

welcome :)

 

Sorry to hear your news...I know that that can't be easy to hear. A new diagnosis of Diabetes IS scary, sad, and overwhelming. I think most of us have experienced those emotions and feelings and many, many others. I know I felt very, very overwhelmed when I first was dx'ed with Type 1, almost 3 years ago (at age 24). I've told this story before, but the day I came home (one day after being dx'ed) I went to bed that nite and almost hoped I wouldn't wake up the next day...very morbid thoughts, I know, but I think that tells you exactly how I felt. Now looking back on that, I think I was way overreacting. It does get better...so please, please give it time and don't worry!

 

My suggestions for you would be to keep educating yourself and your daughter about her disease. The more you learn, the better off you both will be. I truly believe knowledge is power.

 

I would work closely with her doctor. I don't know if she will be seeing an endocrinologist, but I would suggest that (they are the medical experts), as well as a certified diabetes educator, and a dietician. This team can really help you to start her on a good treatment plan including insulin doseages, meal planning, testing, and they can answer all your questions.

 

Like someone mentioned, I think finding a support group or even a group online like this one, can help wonders. :) (It has for me!) . For me, it helps me realize that I am not alone...many others go through similar experiences as me and understand. It may really help her. Also encourage her to talk to you about her feelings, concerns, and questions. Knowing that you are there for her is one of the best things you could do.

 

I think that's most of the basics. It takes time, but it will get easier. Soon it will be just another part of her day. I know testing, injections, and following a diet pretty much suck, but she will get used to it. In a way, managing her diabetes is really just maintaining a healthy lifestyle.

 

I wish you the best and please feel free to pop in anytime with any of your questions or just to say hi.

 

Take care! :)

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David

Hi Kelly, I was also diagnosed at 12 (I'm 46 now). I know I didn't cause my diabetes and your daughter couldn't have caused hers. While things have sometimes been tough, my life certainly hasn't been ruined by diabetes. In some ways, it's made me stronger and more determined to succeed in spite of it.

There are a lot of resources available to you. Get in contact with your local ADA and JDRF chapters. They can help you cope and connect you with others who've gone through what you're going through now. Your doc may also be able to connect you with others locally (w HIPA compliance). There may be a diabetes group that meets at your local hospital although it may be more geared for Type 2s.

Yeah, you're being inaundated with information. Absorb what you can, and don't worry, if you don't get something the first time, you'll have another opportunity to later. Take your time, it does get easier.

David

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duck
One more thing, you all mention the pumps, but our dr. says they are not that great just yet, what are your thoughts??

 

Kelly

 

Your doctors are full of it. You should get a new one.

 

(now I'll go back and read what the rest of the responses said)

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CarlyesHope

I can see it now, going into my first doctor's visit and telling him he is full of it.... Can anyone elaborate on the pro v con of the pump?

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Dewey
our dr. says they are not that great just yet, what are your thoughts??

 

Kelly

Kelly,

 

Did your doctor mean that pumps are not that great, or just not a great idea for your daughter yet? If they meant that pump technology isn't that good, then I'd be inclined to agree with Duck (about getting a new one). If they meant that it's too soon to determine whether or not your daughter needs one, then I'd understand their point. Hope that helps you some.

 

As for low sugars, I've experienced quite a share of them growing up. Yes, they can be quite scary, but if there are people around who are aware of her condition, the likelihood of it becoming dangerously low will decrease. Not to say that others will always know what to do or how to handle the situation, but once they learn about it, they can be more aware what to look for if she does experience a drop in sugar levels.

 

Hope this helps, and keep asking questions. We'll offer any info. we can to assist.

(by the way, sorry I misspelled your name earlier :o )

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duck
Your doctors are full of ****. You should get a new one.

 

(now I'll go back and read what the rest of the responses said)

 

 

Tony, Mods, I tried to edit my above message but the board only allows edits within ten minutes--If it bugs anyone, please clean up my language.

 

Carlye's Mom, the doctor pisses me off--That is DINOSAUR thinking, and you can let them know I said that. Tell them I assume they are smart since they have an MD, maybe they should use those smarts and do some research.

 

In my mind, pumping is the best therapy available for Type-1 diabetics. But I also think your daughter should first get comfortable with Multiple Daily Injections (MDI), and here's my reasoning: MDI will be her fall-back if anything should happen to her pump (they can break, fail, etc., though not often). Also, MDI will get her thinking about insulin and how it works. She needs to know how to use MDI as a matter of course and so she can appreciate the pump. LOL :P

 

What your doctor said really aggravates me (as you may be able to tell). There was a time when pumps were very experimental (maybe 1980 or so), but now they are incredible pieces of technology. Visit their sites: minimed.com, cozmore.com and animas.com. They are not for everyone, but from what I can tell, only one pump user here on this site stopped using theirs, and only one other says they did as well on MDI as on the pump. I for one would shoot anyone who tried to take mine from me--If I didn't shoot them, the wife would, it made that much of a difference in my life.

 

Knowing what I know about Lantus, increasing it may not do what you are expecting, but there is so much more detail needed, like what did she eat last, how much insulin did she take and what kind, etc. Do you carb count yet? It's a bit harder when you are a teen or pre-teen, but it's do-able.

 

What kind of insulin are you all taking and how much and when?

 

Oh, get an endocrinologist as your doctor if you have not already--Others advised this already, and I have to concur.

 

Here's something about me: Since I was diagnosed, I have graduated high school, graduated college, flown to Europe, started a real career, bought (two) homes, bought many cars, dated, gotten married, had kids--I even bench-pressed 305 pounds. I've accomplished more since becoming diabetic than before. So there is more than a little ray of sunshine. :)

 

About insulin reactions (lows): YOU have had them, everyone has. You get shakey and feel weird. When I came home from the hospital, I had my first reaction that night and I remember thinking "I've had these before"...Have your daughter carry cake icing or something really sugary around with her at all times.

 

Again, sorry for using the S-word, but man-oh-mighty does that make me mad about the doc... :mad:

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CarlyesHope

Congrats, you made me laugh for the first time in 5 days.... you should be proud, even my husband couldn’t do that!

 

Lets see, Carlye's specifics, as I can recall them:

We live in Michigan

She has 3 endocrinologists

A diabetes educator

A dietitian

And a partridge in a pear tree....

 

We count carbs:

Breakfast ratio = 12:1 Novolog (think that’s it)

Lunch/Dinner = 15:1 Novolog

Dinner gets the added bonus of Lantus 20 units

 

We get three snacks a day, all under 15 grams of carbs to avoid shots - Carlye avoids the shots by eating 3 hot dogs at snack time

**She lost 30 pounds in 3 weeks, this is how we discovered the diabetes**

 

We check her Blood Sugar 5 times a day! Before Bfast, before lunch, Before Dinner, Before Bed and at 2 AM.

 

Her target BS is 200 most reading she is between 300 - 400

 

She entered the hospital with a BS reading over 1000

 

Basically, the only thing the dr said about the pump is that she still has to give herself a shot (though only once every three days) and that the sight of injection tends to get infected very often. Since we saw all three of her docs only for a short period of time while in the hospital, I suppose they wanted to focus on more important topics. Perhaps you can assist me in some questions I should ask the dr. with regards to the pump, this Thursday for her first appointment.

 

I do want her to get used to this way first, but more importantly, I need her to come to terms with what she has before we make any changes, I was just surprised to hear so much about the pump when the drs appeared to care so little for it. Perhaps, it was like I said, there were more important issues at hand.

 

I’m sitting here trying to figure out lunch for her school, and what to have for dinner, and her snacks, things I never gave a second thought too oh and the section 504 - - good thing I enter law school in the fall - - too bad I intend to go for product liability.....

 

Did any kids get treated differently at school? Any lose any friends?

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duck

Your doctors need to teach you the ins and outs of taking a corrective bolus: For instance, if the last time she ate was three hours ago, and you took Novolog four ago and her sugars are still 300, she needs more Novolog NOW--the trick is calculating how much.

 

She is very new to this: whereas high blood sugars are damaging, since she is a new diabetic there is a difference between being high for a month and being high for two years. Most of us here are very stringent, being high for two hours is two hours too long, but since your daughter is new both you and her, AND her team will need a little patience while figuring out and adjusting her ratios.

 

I've had two infected insertion sites in three years. On the other hand, I had multiple infected sites from MDI monthly--one cannot always bust out the alcohol swab at all times when taking two, three shots a day/upwards of 75 shots a month!

 

Sounds like you need a little more lantus and maybe take shots of Novolog to cover snacks--Listen, five units of carbs can increase BS if there is no insulin covering for it.

 

Visit the pump company websites and call them or write them for literature--They will all be happy to send you videos and brochures, and if you call them tomorrow I can almost guarantee they will get you the material before your doctor's appointment. You may review it all and say "No way, that's not going to work." Or you may think "Who do I have to bribe to get this stuff?" That will be up to her and you to decide. Also, browse through the Pumping section of this forum, you'll see what kind of trials and tribulations we go through, and the passion we have for them.

 

At least you are on "good" insulins. Insulin is so much better now that Novolog/Humalog are out, and Lantus (soooo much better than NPH).

 

Just make sure your kid has sugar with her!

 

My friends were all cool with my diabetes--I had more of an issue with it than they did. But, I haven't been a teen since 1992, though my wife says I act like one still (using curse words, listening to Limp Bizkit and Jay-z...)

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koblenz

Hi Kelly and Welcome. Like everyone else has said, I am sorry to hear about this but you found a great place for info. I will skip the usual obligitory advice, as the others have pretty much covered it. On to your questions:

 

The Pump:

I also think pumps are great, just started mine about 3 months ago. But I enthusiastically agree that you should wait at least several months before you start looking into that. Carley needs to come to grips with this disease, and get used to the daily routine. Once she has mastered the basics, then it may be a fantastic idea for her treatment. I love mine and hope I don't have to go back to MDI anytime soon!

 

Lantus:

As you know, Lantus is the "long" acting insulin that covers her day and night. I am a little confused why they thought that extra Lantus would bring down a persistent high reading.... unless it is that high consistently without eating. If you have not done so, or were not told to do so, you may want to inquire about doing a "test". Basically you take your lantus as normal, and then you test several times overnight. On another day, you skip breakfast and test frequently. Same for lunch, and dinner. This should show you if the amount of Lantus she is taking cover's here overnight and between meal periods. Remember, DON'T do this without first consulting your doctor. They may have special insight I am not privy to. When I started on the Lantus/Novolog combination, it took me about a month to get it fine tuned. I understand it can sometimes be a little more difficult to get nailed down for youngsters. Once you get the Lantus dose "tuned", then you can start tuning here Novolog injections.

 

Friends:

Well, I was not diagnosed as a child, so I have no insight there. I was diagnosed at age 35 with type 1. I don't imagine she should have too many problems with that. In my humble opinion, I would not want people as friends that treated me badly or stopped talking to me just because of this. Reminder her that she is still the same person she has always been; this disease didn't change that, just mades life a little more inconvenient (sp?). Also, encourage her to sign up and get a member name on this forum or another place. She can ask her own questions, make friends with some of our younger members, and see that she is not alone. (with proper internet supervision by Mom of course). :D;)

 

OK, I will leave you to it. Check back in and let us know how you both are doing and ask questions. It sounds like you are going to do just fine; one day at a time. Before long, I can just hear her saying "Geez Mom, I know I have to test my blood sugar, I am not a baby you know!" :D

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gettingby

I worried about losing friends too but I didn't. Actually, I gained more. :D My guidance counselor actually introduced me to a fellow student who was also diabetic and he served as a mentor for me for many, many years. Maybe the school could do that for Carlye. My biggest fear was losing my best friend. I was terrified to tell her and her parents. Know what they did? They came to my house, sat down with me and my mom and said, "Teach us what we need to know. These kids have been friends forever and diabetes ain't gonna come between them". I have to say that I loved her and her parents even more after that. :D

PS Koblenz is right. If her friends let this come between them, then she doesn't need friends like that. Sorry if that sounds harsh.

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Dewey
Perhaps you can assist me in some questions I should ask the dr. with regards to the pump, this Thursday for her first appointment.
Following are some good questions to ask with regards to the pump:

 

1. Explain that pump therapy may be the best way to regulate your daughter and ask if he has a working knowledge of the different pumps (currently available - i.e. Animas, Deltec Cozmore and Medtronic Minimed).

 

2. Ask how to start the process (with his or another clinic) to start pump therapy for your daughter. Since each doctor is different, his or her requirements or pre-requisites may differ from other endos.

 

3. Ask about any local Pump support groups or Diabetes classes that you and your daughter can attend, to learn more about how it.

 

4. Go to various pump sites, and review pump comparison sites as well. A good comparison site to check out is:

 

Diabetes Net

 

Animas' site is: AnimasCorp

 

Deltec's: Deltec Cozmore

 

Minimed's: Minimed

 

Children With Diabetes: Children With Diabetes - Pumps

 

These sites provide some decent info about the currently available pumps. Hope this helps.

 

Did any kids get treated differently at school? Any lose any friends?

No, actually, my friends were really cool about it, and because I moved (and took the Diabetes with me ;) ), the new friends I met had to just get used to the fact that I had it (which many asked questions and wanted to learn about it). As the others said, If Carlye's "friends" treat her any differently (or stop being close) after finding out she has Diabetes, Were they truly friends to begin with? No! :thumbsup:

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Brent44a

Hi Kelly, Welcome. Sorry you had to find us under these circumstances. I was diagnosed as an adult so I do not have the experience that some others here do. The only advice I can give is to make sure you use the services of an endocrinologist you trust. I waited several years to do so and, for me, it was a huge mistake not to do so right away. Thank God, I found a good endo I trust. I think you'll know when you do. Also, read and research to get to know what you and Carlye are dealing with. Again, sorry to meet under these circumstances, but welcome. Come any time for support and info. I'm looking forward to hear how it goes.

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David

Hi Kelly, Pumps are the platinum standard for diabetes care. I agree with the others about what your doctor said, but some doctors want you to wait for 6 months to a year so you know the basics of diabetes first. Getting a pump involves even more learning than you're getting now and some feel that it's just too overwhelming too soon and that its better to wait. I'm not sure that's valid, but it's a common attitude, even among pro-pump endos. I see that you're in Michigan. If you're in the Detroit area, theres a monthly pumper group that meets in Troy. I say this because I'm just across the border near Toledo and attend occasionally. (PM me for more info) I believe that Ann Arbor also has a group.

Infected pump infusion sites are a possibility, but rare. Just be sure to use aseptic techniques. In my 4+ years with a pump, I've had one infection, and it was a minor one.

My first low was induced deliberately while I was still in the hospital under controlled conditions. That was so I would get to know the feeling so my parents could see how I acted and how quickly I recovered with proper action. Maybe that's still a possibility for you?

David

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buzzborne

I just wanted to say hey.. and welcome to the forums.. you have found a great place, and you will find alot of support here :)

 

I was diagnosed at the age of 11, now aged 19, to begin with yes it was a shock, even though my Father and Uncle are diabetic, but it does get easier, and the best thing is the support that you give eachother through the rough times.

 

Did any kids get treated differently at school? Any lose any friends?

 

Just after I was diagnosed there was a trip to France that I was supposed to go on, parents and tht Dr's thought it best that I didnt go as I was still coming to terms with injecting etc, but everyone in my school was really supportive, and they all wrote me letters to cheer me up, and I knew from that there wouldnt be a problem when I went back, sure I was still scared, I was the only person in school with this disease, who wouldnt be, but as time went on, my friends used to be able to tell when I was having a hypo before I was (my eyes used to glaze over...) they were a god send!

Yes you do get the occasional few ppl that will cause trouble, and this may be the case with your daughter, but I doubt that she will lose her friends over this, I am pretty sure that they will stick by her.

 

If you like, PM or email me, or if your daughter would like someone to talk to, I dont mind in the slightest.

 

Take care of yourself, and your family it will get better! :)

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CarlyesHope

I was in no way prepared for what happened this morning. Today was Carlye’s first day back to school, or should I say, should have been her first day back, we got up as usual, but she claimed she had a stomach ache (something she never does) she claimed she couldn't go to school, (something she never does) she wouldn't eat breakfast, and she began to cry. The school had not been notified of her diabetes yet (they were closed on Thursday and Friday of last week) so we felt we had to take her in and we had to get things straightened out. We forced her to go. She cried (something she never does) she talked, through tears about how she is never going to be a normal kid. After an hour in the office, we finally got her got her to go to a class but on her way she broke my heart "I hate my life, I hate school, I hate this” Carlye has never (I swear on her life) ever said hate in those terms. She is a straight A student who loves school, loves learning, loves life and now she hates it?? It took all my energy not to run out of the school with her in my arms....

 

Two hours later she was back in the office complaining of a stomach ache, headache and shaky. I thought okay, this is her low - we took her BS but it was 215. How when she hasn't eaten since last night at 10pm? And hasn't had a shot since 7pm yesterday? Anyway I tried to get her to eat a snack, no go. Finally after 25 minutes in the office and her crying some more I figured it was just too exhausting and I signed her out.... god I hope I did the right thing...should I have made her stay at school? Part of me says yes, she needs to face it, and part of me says enough is enough what good is sitting in the office all day? This is so much worse than I expected it to be....please tell me all of you cried for days on end....

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HeatherP

Welcome Kelly. I'm a little late to the party, but everyone before me has given great advice. It might help to have your daughter start talking to some other young folks who have diabetes also. It may be too soon at the moment though. She has a lot of emotions to work thru (I know I did) and that's normal. Give her some space to feel them, but not get bogged down. It's very easy to get stuck in the "why me" mode and not move on to a more optimistic and healthy attitude. I was 24 when dx'd, so I can only imagine what it would feel like at that age.

 

She should know that at the moment if feels like her whole life is just all upside down. But with time, information, and support she can do anything anyone else can do, it's just going to take a little more planning. This is actually the best time to be diabetic - we have so much technology and knowledge. Diabetes CAN be managed and life WILL go on.

 

**hugs for you and your daughter**

 

HeatherP

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dixiepixie64

Kelly,

I cannot even pretend to know how you are feeling. I live in fear of my 12 year old daughter developing diabetes through some genetic statistic because of my type 1.

 

Everyone has given you good advice here. About all I can add is that I know you can get her through this time - hang in there. She can do it - kids are resilient, just give her time to adjust and hopefully you can find another diabetic her age either through this forum or in person to befriend. Be careful of not being too overprotective in your support (I know that's hard). I got some good advice on parenting once in that regard - in essence that you can actually undermine your child's strength & confidence by overprotecting them to the point that they actually believe you don't think they are strong enough to deal with something. Make sure she knows you are absolutely positive that she is strong & going to be able to deal with this setback.

 

I too believe a pump would be a good idea once she adjusts.

 

Thinking of you and sending prayers your way.

Gale

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