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Old 11-13-2006, 08:01 PM   #1
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LadyLaine1985 HB User
My 3 year old daughter just diagnosed with Type 1

Hi, everyone I am hoping to find a good support group here. My 3 year old daughter was diagnosed with type 1 diabetes a week ago.

On November 1st she started to become ill. I thought she was getting the flew. She threw up a couple of times in a 3 day stretch. So then I called her pediatrician and was told to give her clear liquids. Last Saturday she was feeling a lot better, but then that night she started trowing up a lot and couldn't keep anything down. Durring the night she started breathing weird. And I thought she was dehydrated and I was worried about her weight, she will be four in January and She only weighed 27 pounds before she got sick and during the time of being sick she was down to 24 pounds.

So I took her to the ER thinking she would be admitted for dehydration from having the flu. Well it was a shock to me when they told me her blood sugar was 1100 . We had a time of it because her veins were so tiny the could not get an IV into her and she was crying just for a drink of water. They tried her hands a few times and her feet and arms and then finally got one in the bone in her leg. Then She was life Flighted to the Childrens Hospital. I had my mom and my 6 month old son with me. I called my husband at work and told him what was happening and we picked him up on the way down there. By the time we got there she was in the Pedeiatric Intensive Care unit and now had the IV in her neck she was on fluids and insulin.

They then told us that she had type 1 diabetes and was insulin dependent and would require insulin injections for the rest of her life to live. I was completely devestated. Though I was happy that they knew was wrong with her and acted so quickly. So we all took turns with my 6 mos old son in the waiting room while someone stayed with my daughter. I had to keep him with me in the hospital because he is still breastfeeding and will not take a bottle.

She was really week for about a day and just wanted to be held. Her sugar was stableized in about a day. Then was transferred to the childrens and spent four more days recovering. While my husband and I were pumped full of all the diabetes info we needed to know. My son and I stayed in the Ronald McDonald House, which was really nice since it is far to drive everyday and I couldn't room in with her because he still nurses twice a night.

She's home and acting just like her normal self. She is really good about getting her finger poked, but still fighting about every shot. But she's so cute about the carb counting. She says stuff like ''hot dog don't have carbies. I can eat hot dog and you don't give me shot.'' I was surprised by how much she does understand about it.

She gets four units of Lantis in the morning. She is on .25 diluted humalog.

She has a sliding scale to cover high blood sugar and then a unit for every five grams of carbs she eats for breakfast lunch and dinner plus snack. Getting the right dosage seems to be an issue. She started out on one unit for every 15 grams of carbs and then 10 because her sugar was always under 180 in the morning but all day it is high ranging from 280 to 550. Now she is on 1 unit every 5 grams. Hopefully that will bring it down now.

Any information would be appreciated I have only begun being educated on diabetes for a week. Thanks everyone.

 
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Old 11-14-2006, 01:11 AM   #2
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rickst29 HB User
Lightbulb Re: My 3 year old daughter just diagnosed with Type 1

I'm sorry to hear that she has joined our club.

I can only offer ideas and GUESSES, I'm not qualified to give medical advice (even if I were, Healthboards rules wouldn't allow me to say so).

Here's a guess: A unit per just five grams is quite low. If you're gonna do only a SINGLE Lantus shot (many parents do TWO per day), shooting at BED TIME is gonna have better activity during the early and middle day (when bG is INCREASING) than shooting in the morning. Check out the graph of activity on the package insert in the insulin bottle packages.

Another possibility is, she's eating carbs when you're not counting them and shooting. She DOESN'T like shots, so it wouldn't be surprising if she isn't 'volunteering' for pain she doesn't like (but needs to put up with). If there's a cheating problem, be nice but aggressively firm: cheating children often grow into cheating teenagers, TOTALLY skipping insulin so that they can eat "anything they like" and not gain weight. They frequently end up with devastating complications at a young age (20s), but the damage can't be undone.

I think your advising MDs have come up with a VERY good plan, and you understand it well. 500s should be avoided, do you also have a "sliding scale" for shots to "adjust" highs?

Mine, for example is shoot 1 unit per 30 points. ABSOLUTELY, POSITIVELY DON'T DREAM OF TRYING MY NUMBER!!!! This is weight dependent, I'm a full grown man of almost 200 lbs. But if she's reaching numbers 350+ in the daytime, and staying this high more than 3 hours after meals are finished, I think (*** I can't give medical advice, I only THINK***) that most endos would want you to apply a small shot, WITHOUT food, to correct this excessively "high" reading. But you would be using a MUCH smaller shot to "adjust for" for a given number of "excessively high" mg/dL , my dosing could easily kill her.

I'm explaining the treatment, I have no idea what "sliding scale" is correct for her. But my scale would be horribly wrong, maybe 10x, 20x, maybe 30 TIMES too much insulin.

Now, I hope this doesn't get me banned for referring visitors to other places. Healthboards-Diabetes is a general diabetes board, and MOST of us are adults with type-2. Your daughter has type one, and being only 3 years old, has a case with VERY special issues. It really ought to be OK for situations in which this site is SO OBVIOUSLY NOT THE BEST, and never can be. There really is a better place for parents of newly diagnosed small CHILDREN WITH DIABETES. Even if I can't post a web address, maybe you can Google for it.

I am T1 with long experience of insulin-dependent diabetes. I'm sorry that your daughter, and you, have joined my special club (the 5% of Diabetics with T1, rather than the far more common "adult" T2-- which also frequently happens to kids these days). I hope to hear from you again-- here, or both places, but especially there, where you will find lots of parents in the same boat.

I hope I don't get banned for this post, but frankly, if I do, it was worth it. Let me know if you find another place by posting "thanks". The Guesses which I have posted ---> DO <--- need to be reviewed with your treating MD; *NEVER* use advice from the Internet without having it confirmed and modified by your own treating Medical Professional.

 
Old 11-14-2006, 04:56 AM   #3
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Re: My 3 year old daughter just diagnosed with Type 1

OK, brace yourself. I have a lot to say. I have had T1 since 1966. I was 2.5 years old at diagnosis. You did a terrific job getting her to the hospital. Most kids that age are brought in in a coma. You obviously take great care of your daughter and are very observant about how she feels and acts. That is going to stand you in good stead.

Now, the good news. I am going to tell you what my pediatric endo told my mom when I was diagnosed. She can lead a healthy, happy life and there isn't anything she can't do if she sets her mind to it. Always remember that.

You are always going to have to put in a lot of work regarding her basal insulin requirements and her carb ratios. These are going to change very regularly. First, because she may still be producing a bit of insulin in fits and spurts (honeymoon period) but that will end. And secondly because as she grows, her body will always be changing. Remember too that her carb ratio may be different at different times of day. You will have to find what works for her. The goal is to keep her blood sugar as stable as possible. There are a number of studies that show that complications due to high blood sugar generally only start after puberty. Something about being pre-pubescent seems to be protective. But that is not a license to slack off.

My parents did me the greatest favor they could possibly do. They took care of me. It is great to make sure that she knows everything, but remember that it is your job to do most of the work. Do it for as long as you can. Diabetes is a huge responsibility. One that she will have for a very, very long time. The longer you can take the burden off her shoulders, the better she will be. I'm not trying to take away your hope, but they have been telling parents about a cure in 10 years or so since the 1950s, and it hasn't happened yet. So don't hold your breath.

My first endo told my mom something that made my mom think the doc was a monster. But in retrospect, she was right. She told my mom that in a way it was easier for her to get it so young. And I agree. She doesn't have a lot of habits like running to the corner store on her own with her allowance to buy a chocolate bar. So she won't have to be making huge changes in her life like a 10 year old would. So don't worry about her too much. She is resilient.

Have you thought about a pump? I have met parents on other sites who children are your daughter's age and they are on a pump. It can be a great thing for her because she won't have to inject and you can lock it so she won't accidentally give her self too much.It is a great option for kids.

Anyway, I'm sure I'll think of other things later, but in the meantime, as as many questions as you like and please keep us posted.

Cora
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Dxd T1 1966, 2001 dialysis, 2002 kidney transplant, 2003 insulin pump, 2008 pancreas transplant

 
Old 11-14-2006, 05:28 PM   #4
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LadyLaine1985 HB User
Re: My 3 year old daughter just diagnosed with Type 1

Thanks for the responses! She is on a sliding scale for highs

180 1 unit and every 50 another unit.

We did the every 5 grams 1 unit of insulin and it seems to be a good dose for right now because her sugar before dinner was 75.

Is type 1 hereditary. No one in my family has type 1 and I am just wondering what the chances are of my son getting it to or is it just a fluke thing?

Cora, I am interested to know the long term of diabetes since you have had it a while and since around my daughters age. Are there any side effects, some where along the line I heard that they are prone to foot and eye problems. If you know what kind and does that just happen if you do not take care of the diabetes. I don't know anything about the pump. Do you have one? Can you tell me the benefits and how it works?

Rickst29, you didn't say when you were diagnosed or how long you've had it but thanks for the info, every thing helps. I am sure she does not sneak anything, she barely eats anyway and nothing is in her reach. Theu said she gets lantis in the morn because she is a toddler, not exactly sure the difference, but thats what they told me to do, and the lantis dose seems to be correct when looking at her am reading.I will have to remember what you said about cheating teens, we have history of eating disorders in our family anyway. I will also look into a type 1 board.

Thanks so much. We seem to be figuring out the dosing and getting things under control. I just want to know everything I can to keep her as healthy as possible.

Also in case you guys don't know in Wegmans I found this great milk called Calorie Countdown, has only 2 carbs per 8 once. they have chocolate too for 5 grams. My daughter is a milkaholic, I don't know what I would have done if I didn't find this. Thanks again.

 
Old 11-14-2006, 10:12 PM   #5
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rickst29 HB User
Arrow Re: Who is rickst29? (What is *my* case like)

Rickst29, you didn't say when you were diagnosed or how long you've had it... I am sure she does not sneak anything, she barely eats anyway and nothing is in her reach.[/QUOTE]I wondered about "sneaking" food when I read about bG readings as high as 550 while under treatment. That's extremely high, and caused me to wonder how she might have gotten there.

I am at nearly 30 years of T1, with no complications except for a shoulder injury sustained in a fall (while "low"). It's all fixed now. Cora and I are both pumpers. I also have another gadget, a continuous glucose monitor, which tests and displays a reading automatically every 5 minutes (even while I'm asleep). It makes a loud "buzzer" alarm, waking me up, if I fall below 80 or go above 160. (Although *MY* alarm limits are way too tight and too low for a young child.) I know of a VERY small number of young children whose parents use one of these devices successfully.. but this list includes a 27-month old girl. And her mom, just today,

(drum roll here)

GOT A LETTER, SAYING THEIR INSURANCE **WILL** COVER IT!
Other kids I know a lot about are boys of 4 and 6 years, a bit older than your daughter.

Last edited by moderator2; 01-29-2008 at 05:40 AM. Reason: posted commercial website

 
Old 11-15-2006, 05:15 AM   #6
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Re: My 3 year old daughter just diagnosed with Type 1

As a person who was diagnosed at a very young age I just wanted to add that the worst thing you can do is accuse your child of "cheating" (hate that word) without any proof. Unfortunately, huge jumps in glucose levels, up or down, can happen for no apparent reason in young growing bodies. The bottom line is that you treat the high appropriately. You can destroy a lot of trust with your child if you are constantly accusing them of being "bad".

Gee, do I sound like I have a chip on my shoulder? You bet. I still get unexpected highs and it doesn't come from eating the wrong things. It just happens. I'm not saying don't monitor what she eats. Yes, you should. But sometimes things just happen and there is no apparent cause. My mother had the awful habit of telling me that if I ate something I shouldn't, I should just tell her and we would fix it (more insulin, or whatever) but when I did she just started screaming at me and telling me how awful I was.

The bottom line is that there are a great many different hormones shooting through the body of a young child and that can change blood sugar dramatically. So can emotions. When I am upset, or sad, my glucose shoots up too. If I get frightened or really happy, I drop.

By focussing too much on the food and the "cheating" you can create a severe dysfunction regarding food in your child. So be careful.

Cora
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Dxd T1 1966, 2001 dialysis, 2002 kidney transplant, 2003 insulin pump, 2008 pancreas transplant

 
Old 11-15-2006, 10:33 AM   #7
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rickst29 HB User
Cora



Thanks for the reminder-- some kids fly around EVEN MORE than I do, and *I* go balistic when people say "there's no such thing as brittle, you're just not paying attention".

You and I both know that brittle DOES exist. I was using my personal experience (200 or 300 for no reason YES, but not 550) to make a (very likely) unfair assumption.

Thanks for the gentle head-slap

 
Old 11-20-2006, 12:50 AM   #8
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MadisonMutiny HB User
Re: My 3 year old daughter just diagnosed with Type 1

Hi, I saw your post and haf to comment because I was diagnosed at age five with T1.
If she fights you with taking her shots (According to the folks I had this problem BAD) I suggest a "Star Chart." Make a chart and each day she has a "Good day" and takes her shot without too much drama give her a star and let her know when she gets so many stars she gets a treat. <---I loved it, I rarely threw temper tantrums after my parents did that I'd sit still for them.

what also helps with shot taking^is if you let your daughter give you a shot some time. you can use saline. it helps, kinda like if 'Mommy can let me give her a shot and it was no big deal then I can let her give me a shot.'

Also I absolutely agree with Cora, for a very long time my parents were incredibly strict with what I ate, which led to a lot of sneaking food around, which isn't good for anyone. let her have sweets every now and then and just make sure you account for the carbs/sugar.

Medical ID bracelets are also incredibly important and have saved my life a few times, there are some sites that specially design the bracelets to look cute. But yea, I can't stress enough how important this one is, the effects of low blood sugars can be extremely over whelming and becoming non-responsive, "out of it", or unconcious are an extremely common effect of being low, so your daughter might not always be able to tell an adult what's happening to her, for an example: preschool.


(Oh! also always tell all teachers/babysitters anyone who is watching her how to care for her and that she's diabetic, have a plan written up with what to do in case of an emergency.)

Lastly, it's going to be okay. It may seem like it's taking over your life right now, but it really does get better and just becomes another part of a daily routine. As long as your daughter's blood sugars stay under control, there's no reason she can't grow up to lead a normal life. As for optimism, Scientists are incredibly close to finding a cure through stem cell reseach and each day the technology for Diabetic gear improves, like the insulin pump such as the paradigm. I highly recommend it for kids. It makes counting and figuring out carbs MUCH easier(it calculates everything for you, and also accounts for how much carbs or sugar is currently working in your system) and this way they can eat what they want and just use a sliding scale to bolus for what they eat. also you only have to stick them with a needle once every 2-3 days to insert the catheter, instead of being stuck daily. You might want to look into it after your daughter leaves the honeymoon stage (this is what newbie diabetics are called for the first few months of being diagnosed and your blood sugars don't need too much insulin and are really well maintained, but your doctor probably already told you about that)

Good Luck

Last edited by moderator2; 01-29-2008 at 05:39 AM. Reason: posted commercial website

 
Old 11-20-2006, 09:18 AM   #9
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Re: My 3 year old daughter just diagnosed with Type 1

Hi, and welcome to the group! I'm sorry you have a reason to be here

I don't have time to write a lengthy reply at the moment, but it sounds like you have a great doctor and are a great mother.

I also have a pump, and just wanted to put in another vote for the pump! I think it helps kids so much because it avoids the shots they dread, and lets you give really small doses.

 
Old 01-24-2008, 06:35 AM   #10
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bobwrench26 HB User
Re: My 3 year old daughter just diagnosed with Type 1

Hi. I have two daughters with Type 1 diabetes, a 6-year-old diagnosed when she was 2, and a 2-year-old diagnosed three months ago. Our 6-year-old has been on an insulin pump since March '06, and we're generally happy with how that's working out. Yes, she has highs and lows, and a graph of her weekly blood sugars would look like a roller-coaster, but bit by bit we're getting her A1C down. Still a lot of work to do, but that's diabetes for you. Nobody said it would be easy! My issue, and my question for anyone out there with a similarly aged child on the pump, is with changing the infusion set every couple of days. One of the main advantages of the pump is not having to inject two or three times a day, so one injection every couple of days to change the infusion site should be a doddle, right? Wrong. Our daughter goes ballistic, more so than she ever did on the regular daily insulin injections. It's not so bad that we'd consider taking her off the pump, and she recovers very quickly, but still, anything we could do to improve the experience would be a huge help. Our 2-year-old is on regular insulin injections for now and is amazing about them. Rarely complains. This helps tremendously, but at some point in the future we would like to get her on the pump too so we can have both children on the same regime. Has anyone else experienced the same issue with a child when changing the insulin pump infusion site? Our doctor and nurses tell us is doesn't and shouldn't hurt much, or no more than a standard injection, and personal experience when training ourselves on the pump (with saline) before she went on it would back that up. It's a little uncomfortable for a short while, but that's about it. Perhaps it's more psychological, and her own 6-year-old way of railing against diabetes in general, but if anyone has had the same experience and has any advice it'd be greatly appreciated.

 
Old 01-24-2008, 05:37 PM   #11
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sharon1030 HB User
Smile Re: My 3 year old daughter just diagnosed with Type 1

Hi Bobwrench,

I don't have a child with T1 (I've had it for 25 years and use a pump), but I do have experience with a topical cream called "Emla Cream" which works really well to numb the skin so the insertion of the infusion set shouldn't hurt. Hope this helps you.

Sharon

 
Old 01-25-2008, 06:51 AM   #12
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bobwrench26 HB User
Re: My 3 year old daughter just diagnosed with Type 1

Sharon, many thanks! I'll check out that cream.

 
Old 01-25-2008, 03:58 PM   #13
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sharon1030 HB User
Smile Re: My 3 year old daughter just diagnosed with Type 1

Hi Bob,

You're very welcome. Let us know how it works for you. I have an implanted pump (for another problem I have) and it needs to be filled every 6 weeks or so. It's deeper than the needle for the insulin pump has to go and hurts a bit so that's how I found out about Emla and it REALLY works. HOpe it works for you guys too. It's also great for having blood drawn. I used it on my niece when she was 2 years and she didn't feel a thing!

Sharon

 
Old 01-26-2008, 07:35 AM   #14
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Citycotton HB User
Re: My 3 year old daughter just diagnosed with Type 1

LadyLaine... Have you thought of using an insulin pen? I was diagnosed T1 2 years ago at the age of 36. I started using the pens (Lantus and Novolog) about 3 months after I was diagnosed. I really prefered the pens, they are easier to carry around and the needle tips are not as big or "scary" as a regular needle. I am now on a pump and you could not pry it out of my hands, I LOVE IT!!!! I went thru the holidays new with the pump and did some bad things (cookies, cakes etc..) my A1C last week was 5.5 YEAH!!! If I can say it again I Love My Pump!!! As a diabetic you can do anything and everything, I even got my motorcyle license a few months ago.. Good luck to you and your daughter it's a tough battle but one that can be managed.

Renee'

 
Old 01-28-2008, 08:53 PM   #15
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Curlzzz2002 HB User
Re: My 3 year old daughter just diagnosed with Type 1

Lady,

I have been a T1 for 23 years....I remember like it was yesterday being in your little one's shoes. I can also remember seeing my parent's faces being overwhelmed with information and tons of questions. The good thing about being diagnosed with this disease in 2008.....there will be a cure in your daughter's lifetime. I'm 100&#37; sure of that.

Last edited by moderator2; 01-29-2008 at 05:38 AM.

 
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