New to type 1 diabetes

Shanelle - posted on 01/04/2013

I am experiencing the same thing. My son will be six in a few week and last month i learn that he has type 1 diabetic . I am so worried because i am living in jamaica and the health care system is a mess . i don't know anyone with this type of decease and depending on the internet to guide me . please if anyone would like to share tips with me i would be great full.

Staciemarie - posted on 07/13/2010

My daughter is 9 and a type 1 .. She was Diagnosed in February 2009 before her 8th bday. My advice is if your child is going to be starting school, meet with the school and set up a 504 plan as well as a personal health plan. BOTH ARE neccessary!!! They may say they aren't but you are ENTITLED to it.. and it is super important you get it. I listened to the school when they told me that it wasn't neccessary and my child almost DIED as a result of it. MAke certain the school and it's staff are ALL educated and informed of your situation. JDRG.org has many resources to help you educate yourself and help you learn how to deal with the world and educating people that are in your everyday life. Best of luck!! From one type 1 Mom to another. *HUGS*

Kristen - posted on 06/25/2010

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Melanie - posted on 06/18/2010

Keep smiling and keep up the good work! My son was diagnosed when he was 4 and he's now a very happy, healthy and tall 10 year old. There will be good and bad days that will follow without any apparent pattern, you have to learn that doing your best is the best that you can do. I've learned to accept that there is no such thing as perfection in diabetes because sometimes what worked yesterday is not working today. I can give him the exact same breakfast with the same carb ratio with the same insulin cartridge two days in a row and have a different outcome. But most of the time things are good! Once a certain routine has begun you'll feel more comfortable and things will be more managable. I still keep a chart of all his blood sugars, food intake, carb ratio, activity level ect.. It helps me and the diabetes team figure out what is working and what is not so we can reajust. I have the chance to speak with his diabetes nurse once a week (phone call, email etc..) this makes me feel that I'm doing all that I can and also a 2nd opinon helps. I'm a single mom of three (10, 8 and 6) and I've been flying solo for almost 2 years now, so I really appreciate that I have the opportunity to consult someone else for my son's diabetes care, that way I'm not shouldering the full load. Please know that I am cheering you on and that if ever you need help there is a whole community of moms that know what your going through and will help shoulder your load! Take care.

Heidi - posted on 06/15/2010

My daughter is 8 1/2 and she was diagnosed when she was 4 yrs old. I keep a spare sugar checker and also Gluco tablets in my purse along with extra strips and a injector pen. (we haven't gone to the pump yet) My daughter use to scream and fight come shot time. But we have always taught her as she grows. She has been able to recognize high/lows since she was 5 yrs old. She even knows she can't eat candy/cakes unless myself or her dad say its ok. She is open and not embarrassed to tell her friends she is diabetic and can't have sugar. When she was smaller i asked the teacher to send a letter home to the parents stating there is a diabetic in the classroom so if they bring stuff in it needs to be acceptable for all the kids. I even had a parent track me down and ask me if sugar free candy was ok for my daughter. I thought it was so sweet of her! The parents were really understanding and I haven't had any issues with it at school. Though she starts a new school this year so I am hoping I won't have any issues.

Any questions ask away.

Kimberly - posted on 05/23/2010

Hi Tiffany,
How did she do with her first sleepover? I hope she had fun! I bet you didn't sleep much. I give you a lot of credit for letting her go. My son was diagnose at the end of March this year so we are dealing with similar issues right now. Matthew went as low as 44 too and that scared me. He said he felt fine but was really hungry. He doesn't always tell me that he is hungry because he doesn't want to stop playing to sit down and eat. So I've been watching the clock and making sure he eats about every two hours. I've been telling Matthew that I am so proud of him A LOT!!! and it seems to help with some of the attitude that I was getting from him. They are going through a lot of changes and they have to have some way of dealing with their emotions as do we. Keep in touch.

Tiffany - posted on 05/22/2010

My daughter Zoey was diagnosed March 4th of this year and I'm right there with you. It can be frustrating for me because I could give her the same food/drink at the same time of day yet her sugar levels aren't the same. Tonight is her first sleepover and I'm very nervous. Luckily it's at her friends that lives in the apartment building right next to mine so I'm close but I'm still nervous. With my daughter though she has gotten down to 45 before and said she felt fine so I'm trying to figure that one out and to what I can do to make sure she's really feeling her body for signs. And to Kathleen's comment about the "attitude", I'm dealing with that as well. Zoey will be 10 this July.

Amy - posted on 05/07/2010

ugh, i feel ur pain. my daughter was only 2 when she was dx (august 09) some days i feel like i'm going from meal to meal and that's it. and now w/ the summer coming, i'm worried about carbinn her for playtime etc. she has started realizing her lows which is good. she'll tell me that her legs hurt. i also know that she gets really crabby and defiant if her number is really low. i just check often during these times. it seems overwhelming sometimes. there are nights when i barely sleep b/c she's had a low during the night. then there are night she's fine but i drive myself crazy wondering why she's sleeping so well. lol. i've read a lot of websites and books, etc. and found that it's good talking to other mothers and her endocronology nurse frequently (via email) my daughter is on insulin shots. i'm not a fan of a pump right now. like everyone else said, it gets easier. but i'm still pretty new to this and her numbers are still all over the map. and the honeymoon period can last for a year so we're never really sure what the reason for her numbers being out of whack is. there are times when i measure her food down to the last tenth of an ounce before and after she eats, and she still ends up high or low for the next check. i've found a few tricks out from talking to some other moms and through trial and error on my own. i'll give u my email address if u want and we can freak out together. lol. safety in numbers even when ur having ur own meltdown. lol.

Denise - posted on 05/01/2010

I can't say managing diabetes ever gets easier but it does become more routine and less stressful. My son was 3 and a half when diagnosed and went on the pump 5 months later. He is 5 yrs old now (t1 for year and a half) I have learned that we do the best we can and that is all we can do. Having T1 is not the end of the world (as I thought at dx) Be strong...you will soon figure out your own groove.

Christy - posted on 05/01/2010

Jackie, my son also has special needs. He is developmentally delayed so mentally he is about 3 years old in a 5 year old's body. I do have some issues sometimes with him when checking his blood sugar. It can be really hard because I can't really explain to him why I need to check him or why he needs to eat all of his food, etc. I try to just take it one day at a time and pray that God will give me the patience.

Jackie - posted on 05/01/2010

My 10 year old son was just diagnosed on Wednesday (3 days ago) got out of the hospital late on Friday. Just entering this new world of Type 1 and looking forward to learning from the experiences of others...especially those who have children with special needs and how to deal with the combination of the two issues.

Jesusa - posted on 04/27/2010

I scanned your posts and felt sorry that you moms have to deal with diabetes this early with your babies. Mine was diagnosed when he was 12. It's been 12 years since then and he is now working as a media buyer. I wish all of you good luck in dealing with this for the first few years. It will also help if you meet with a dietician who can suggest meals fit for your young ones.

Rachel - posted on 04/27/2010

hi - my son 2yrs 6m was dx 4 weeks ago. its all so dauntng isn't t? i find myself being on here when i should be writing my essays for degree - like right now! but equally i find it helpful to have normal things to focus on not ust carbs and insulin.



talking and sharing and gleaning fomr other parents is such a relief.



keep seeking help as you have done.



good luck,

Christy - posted on 04/25/2010

Kimberly, my son is 5 too. Even though he has a different type of diabetes and is not on insulin, he can still have highs and lows (though not as extreme as when he was on insulin). Just know that you will learn his signs. I still have issues with getting him to eat enough, especially in the mornings. I think he's going through a rebelling phase, wanting to do everything on his own and it's hard to reason with him. It does get easier to recognize the signs of highs and lows after a little while, but sometimes I think he is and it turns out his blood sugar is fine and it's just a behavioral temper tantrum. It's hard when they are little, but from talking to other parents, it seems to get a little easier as they get older and can tell you how they feel. Best to you and your son.

Kimberly - posted on 04/23/2010

Thanks to all of you who have posted. This has been a really hard week because we've been dealing with A LOT of low BS. I've been on the phone with my son's Endo doctor every day this week reporting all of his readings. They say his pancreas is still producing some insulin and have reduced his insulin. I feel so awful having to give him a shot with only .5 unit of insulin three times a day. I'm just amazing at how well he is adjusting to his new way of life.

Sherry - posted on 04/20/2010

Hi Kimberly! Welcome to the group!

My daughter was diagnosed 6 months ago at her 5 year checkup. We still feel like we're brand new & learning some days. Like right now, she's coming down with a cold so her blood sugar has been quite a bit higher than normal. But when she's feeling ok, now that the weather's nicer & she's out playing a lot she's been on the low side.

The best advice I can give right now is to chart every thing. We set up an excel spreadsheet to document every meal & snack, amount of carbs & units of insulin given, BS number, & time. That way it's easy to remember a snack every two hours. We also (still!) write down every thing she eats, trying to find a pattern of what foods raise her levels. Also, we learned that it's ok to have a 0 carb snack (her fav is pickles, cheese & a slim jim. lol) We must be doing something right, her A1C at diagnosis was 15.6, and 4 1/2 months later it was 6.7. Woot!

Learn the signs of highs & lows. My doctor said its much better to be high than to be low, and it's easier to fix a high. Don't be afraid to do a check, ever, or call your doctor if you have a question.
Do you have a good support system? Use them. I will tell you that one of the worst days for me was several weeks into it...I cried to my mom that I breastfed, gave organic milk, fed fruits & veggies, she never had a soda, so why did my kid get diabetes when these other kids who eat like crap & are already overweight have no problems, or these families like the Duggars who (at the time) had 18 kids and not one of them even wore glasses, but my one & only got sick? I needed someone to tell me that those feelings were normal and to say "this really sucks" with me. And someone to remind me that this is manageable & she'll live a long life because we're teaching her good habits now. Even though some days diabetes was all I thought about, she's still here & healthy & I know there are lots of parents that would be happy to trade places with me.

Another thing...try to get your son involved as much as possible. When we check Amanda's BS we ask her if she feels low, high, or normal, she guesses, then we go over what the number really is & what range it's in. We remind her that if she feels "funny" to tell us. Amanda can tell us when she's low--her thing is her stomach will ache, she can usually tell us around 60. The lowest she's been is 40 and she's told us each time that she wanted to be checked. Emphasize that every one is different & special in their own way. (I do this because I know a type 1 who grew up thinking diabetes was shameful, and now she's having parts of her feet amputated & vision problems at 35). Amanda is proud to show her preschool class that she can do a check by herself and we've even heard her explain to other kids what diabetes is & that her pancreas are broken.

Sorry to write a book! I really needed someone to tell me this stuff in the beginning. Check out JDRF & the ADA to see if there is a support group in your area. I'm in the process of working with JDRF now to set one up in my area. :)

Good luck to you & your family! Like every one else said, it does get easier...it's just a new way of life.

Natalie - posted on 04/19/2010

Hi my daughter was only just 4 when she got diagnosed, I agree with the other mums it does get easier!! My daughter is just about to turn 10. i remember I couldn`t bear to be in home for about a week after she was diagnosed because I was so stressed about it all!! Firstly that she`d actually got diabetes & secondly that there was so much info to take in about it & keeping her well!! As far as school goes don`t let them make light of it, I actually got the nurses from clinic at the hospital to go into the school 2/3 times because I felt they weren`t looking after my dughter properly with her diabetes!! It actually took the headmistress nearly calling for an ambulance for her that made them realise how serious diabetes can be!! At the end of the day all i can say in hind sight is it does get better, try not to stress too much, & get yourself a rucksack instead of a handbag to carry snacks/dextrose/blood check kit etc whenever you go out that made me relax a lot more about it aswell!! Knowing I was prepared!! Hope all goes well for you all!!
Natalie
xx

Aimee - posted on 04/18/2010

My son is 4 and has had type 1 for bout 15 months now. It does get easier and its so much information to take on in such a short space of time. Try not to stress and just take every piece of info as you can handle it. I still have notes and info that I am going through now. Im still learning but i couldnt handle it all at once! Its really hard to figure out when they are high or low at the start. My boys low signs are exactly the same as his tired ones so the first time i nearly missed him having a hypo cos i just thought he was tired! Its a constant journey which does get easier!

Kathleen - posted on 04/18/2010

My daughter, who is 9, was diagnosed at 18 months. so its been 7 1/2 years. It does become easier only because its repetition. I still check some overnights. Her A1c is 7. and she does everything herself except the injections. She does real well. The hard times is when she is in school and they have parties or her regular nurse is out. Holidays will definatly get easier with the carb counting. Its ok to have cheat days. I have a real problem with her tempermant though. When she gets really bad, i have her test her sugar. If its real high/low then I make sure to take it a little easy with her. Its hard to not make it an excuse. She needs to realize even though she's high/low, she is still responsible how she acts and says. Any questions just ask!

Karen - posted on 04/16/2010

My son Adam was diagnosed just bebore he turned 5 and the first time he felt low I paniced. I was running around like a chicken with my head cut off trying to find his tester and juice. It got easier. He is really good at telling me when he is low. And is very resposable about checking his blood when he needs too. He is 7 now. We still have our ups and downs of course. I am so proud of how t1 kids adjust to this hard life.