Parent AND Child with type 1 - Recent Threads

Parents of 10-18yo T1 children - I NEED YOUR HELP!

Ashley — Fri, 25 Jan 2013 19:26:47 GMT

Hello!

I am a graduate student conducting research on the relationship between nutrition counseling & blood glucose control in type 1 adolescents and teens.

If you are the parent of a child between 10-18 years old with type 1 diabetes, I need you!

The link below will take you to a short survey -- it should take no more than 5 minutes and will greatly help to identify whether nutrition counseling helps children maintain their BG levels.

SURVEY: http://www.surveymonkey.com/s/QH57FGQ

If you have any questions, feel free to contact me on this site or via e-mail (msu-agilles@student.mcneese.edu).

Thank you in advance for your participation!

-Ashley

whatever happened to my diabetes-compliant daughter??

FreeHappyHolly — Tue, 02 Oct 2012 21:57:39 GMT

I'm frustrated. Both my daughter and I have T1. My daughter was diagnosed right after she turned 3. She will be 10 next month. I never really had any issues when we would checking her blood sugar or when we would have to give her insulin via her pump when she was younger. Over the past couple years things have slowly been going down hill. She has been taking on more and more of her diabetes care since she's had it close to 7 years now. She goes to a smaller school that doesn't have a nurse there all the time and, of course, she is the only child with diabetes in the school. She has been struggling with attention issues. We were going to take her in and have her tested for ADD but she started crying begging not to be tested. She already feels like an outsider because of her diabetes. She didn't want one more thing that makes her feel different. Her attention has gotten worse and her diabetes care has been affected because of it. I can remind her 100 times to check her blood sugar or give herself a bolus. I've noticed she is sneaking food more often, will lie to me that she gave herself a bolus, etc. Now today I was going to look at her pump to see when the last time we changed it and she actually grabbed it from me and said "excuse me, but that has my own personal information in it!" My question is this - given her attention issues, does anyone have any ideas of how I can help her remember to check her blood sugar and give herself insulin when she eats? I have even tried giving her a dime for every time she checks her blood sugar in hopes that would keep her motivated. I feel like I'm running my tail off working full time, taking care of my daughters, taking care of my mother, taking care of my diabetes plus all the other things that go along with being a mom. I have just run out of ideas on how to get her to take better care of herself when I'm not with her. I try to watch what I say to her because I don't want to attach any shame to her about not taking care of herself because I know how it feels to think that my blood sugar numbers are somehow related to me being a "good diabetic" or "bad diabetic". I know I am ultimately responsible for my daughter so it's hard not to beat up on myself that if I were a better mother her diabetes control would be better.

wants to eat more at bedtime snack -what to do?

prayn4cure — Sat, 09 Jun 2012 04:39:19 GMT

my 6 year old duaghter was diagnosed with type 1 few months ago. She is on multiple injection. She used to eat 20-25 carbs as a bed time snack. lately she has been wanting to eat more~ about 40 carbs? what should i do? increase the humlin or give her some humlog in addition to her regular humlin?

New mom diabetes blog! www.everydayhighsandlows.com

everydayhighsandlows — Mon, 09 Jan 2012 18:28:59 GMT

Hi everyone,

I started a blog on raising twins. One of my guys has Type 1 diabetes and one does not.

I would love for you all to come check it out.

I keep it pretty light and easy to read because, let's face it, our days can get pretty heavy at times.

Feel free to become a member and/or leave a comment. My readers would love to hear your story too.

The website is www.everydayhighsandlows.com

Thanks,

Shari

Type 1 Emergency Planning

Vanessa — Wed, 24 Aug 2011 14:15:56 GMT

I'm on the East Coast and was one of many who felt the earth shaking yesterday, wasn't anything to serious for us, but can't get the thought outta my head "What if it was?" Are you prepared for any of Mother Natures wrath? Or any of human stupidity? Do you have a plan set in place with your child? Well if not, I came up with some ways to maybe help with the planning. Please visit my blog & tell me what you think, or even if you have anything to add.

diabeteswontstoprial.blogspot.com/.../type-1-emergency-planning.html (hopefully this will work as a hyperlink, if not please copy & paste in your URL.)

Stop Juvenile Diabetes

Vanessa — Tue, 19 Jul 2011 19:45:45 GMT

Hi Everyone,

I hope everyone's well, with normal BS numbers! I am a mother of a 10 year old with Type 1 and my son & I have set up a Facebook page for parents/ and or those living with Type 1 to join together, answer each others questions and just be there for one another. I know this page is WONDERFUL for that as well, I just seem to gravitate to Facebook more often. For me it's been therapeutic and for my son, it just shows that he not the only one.

I had seen a spike in fans and hope to gain more, as more and more people like my page, more and more seem to have questions that I am not always the best equipped to answer. I hope one day for our page to be a spot where people can come ask questions or just post whats going on in their lives and we as a group can be there to uplift or answer any questions people may have, especially those who are newly diagnosed and or parents who just need a lil encouragement for their newly diagnosed children. Coming from that situation myself, I know the heartache and confusion that causes and if I can just help one parent or newly diagnosed person through that difficult time then I will feel good about that.

So I hope you will connect with us, share your stories and help out others in our quest for a cure & understanding: Facebookpage http://www.facebook.com/pages/Stop-juvenile-diabetes/108065249284832

Diabetes Binder

Jaimie Rosaile Chaffin — Fri, 01 Oct 2010 23:20:03 GMT

I have posted this in other place's but I thought that this time I would go to the parents and children with type 1 diabetes and ask what u parents put in your kid's diabetes binder or your own diabetes binder what is in your kids and your's diabetes binder if u have one?

Just asking...

Amie Meenk — Mon, 28 Jun 2010 18:26:45 GMT

As adults with T1 whom also have children with T1, do you find that you are more relaxed towards your childs diabetes? I am finding a hard time putting it into words so I will babble on a bit more. My daughter is 5, has been T1 for 2 years. She checks her own blood sugar, changes her own pump sites and is learning to count carbs. By no means is she unsupervised while doing any of this, but I let her pick her site for her site change, I help her get it ready and she sticks herself and I just make sure she has it attached good. We were at a JDRF function a week or so ago and some of the parents were just shocked that I let her do her own shot. But I was diagnosed at 6 and started doing it myself back then so why not. And as I said, I always watch to make sure it goes good, and if she decides she does not want to do it herself, which rarely happens, I do it for her. I have been told by a family member that I put too much responsibility on her, but I don't agree.

I very much want Courtney to feel in control of her disease but I am the parent and do help her as much as I can and as much as she wants me to. I help her with everything but feel that if she wants to tackle it now, why not. Is that so wrong? Why do others want me to feel bad for letting my little girl feel good about doing things for herself? She is very proud when she does her shot and we make a big deal out of it because we are just as proud.

How common is it for a parent AND child to have type 1??

Candace — Wed, 27 Jan 2010 04:21:23 GMT

I know what all the statistics say - 3% chance if the mother has it, 7% chance if the father has it...but I also know that statistics don't always tell the whole story. A little background on me: my younger brother was diagnosed at age 9 and has had it for 16 years. I was diagnosed at age 26 and have had it for 3 years. Neither of our parents (or anyone else in our extended family) has it. I have a 15 month old daughter and worry almost every day that she'll end up with diabetes. So I have a few questions:

How many of you out there have type 1 and also have a child with it?

How old were you when you were diagnosed? How old was your child when he/she was diagnosed?

Did you enroll your child in any type of diabetes-related study? (such as the TEDDY study) If the answer is yes, do you ever wish that you hadn't? (Sometimes too much information can be a bad thing...)

Thank you in advance for sharing your stories!

Peer Support for Adolescents with Type 1 diabetes

mrcaswell — Thu, 10 Dec 2009 01:39:59 GMT

Are you an adolescent (12-16 yrs old) with type 1 diabetes?
Have you also been diagnosed with type 1 diabetes for 6 months or more?
Are you a parent of an adolescent with type 1 diabetes?
Would you be interested in participating in a project on peer support?

If you answered YES to any of these questions, please participate in a project examining peer support for adolescents with type 1 diabetes.*

Hello, my name is Meghan Caswell-Pohl and I have been a type 1 diabetic for 14 years. I am a student at Central Michigan University and am interested in learning how to help children and adolescents with diabetes. My project is trying to measure the amount of peer support that adolescents with diabetes receive. You will also be asked to nominate a friend to participate in the study. All of your information will be kept confidential and in a secure, locked storage unit. As a token of appreciation for your participation, you will receive a gift certificate.

If you are interested in participating in the study and you are a/an…

Adolescent with diabetes: Please share this posting and your interest with your parents. Your parents will also have to give their permission for you to participate in this project.

Parent of adolescent with diabetes: Please share this posting and your interest with your son/daughter with diabetes. In addition to your consent, your son/daughter will be asked to give their assent to participate in the project.

Please contact Meghan Caswell-Pohl at mrcaswell@gmail.com with the following information:

· Subject: Diabetes Project

· Adolescent name

· Parent(s) name

· Contact email and/or phone number

*This blog does not guarantee participation in the project.

Boy I feel good today.

Amie Meenk — Tue, 01 Sep 2009 19:28:26 GMT

Hello everyone in this wonderful group of parents and children with T1,

I am sure we all have days or weeks where we feel overwhelmed with diabetes in every way and wonder if we are really doing well. I have been having those feelings lately and have been dreading taking Courtney into Children's this week. I feel like I have had a few too many missed boluses and was worried her A1C would be higher than we want it. And we all know we expect perfection even though it is somewhat out of our control. Well after all my worrying her A1C was 7.1!!!! Yeah. It is just a small number but it really made me feel like I am taking care of her, even with a few missed boluses from time to time.

Just wanted to share some good news as I am sure we all have the same worries.

anyone have sleep issues from your type 1 and your child's type 1??

FreeHappyHolly — Mon, 13 Jul 2009 18:01:18 GMT

I am so tired of being exhausted in the mornings when I wake up. It seems like I can't actually fall into a deep sleep because my mind has been "trained" to always been aware of what my body is feeling so I don't get low. I'm always thinking about my daughter's (she's 6) blood sugars at night time too. If I wake up it's like "I need to go check her bg".....then I think "you're being too paranoid...she is fine, go back to sleep"....then it's like "I woke up for a reason....my sixth sense is telling me she is low so I need to go check her". I go check her bg and she IS actually low so this totally reinforces my crazy behavior. I have done this with my diabetes and my daughter for soooo long that I can't get a restful night sleep. I won't take any sleeping pills because I need to always be in tune with my body to make sure it's not low and I need to be alert and ready to take care of my daughter if she gets up in the middle of the night having to use the bathroom and drink water. I've been using my sensor more lately in hopes that I can rest a little better. There are some nights were I hit the lights and don't even remember walking across the room to crawl in bed. My mind is always active but my body is dead to the world. Some mornings nothing can wake me up.....when I get up in the morning and check my daughter's bg when she's still asleep it's low. I then beat up on myself for being a "bad mom"and not on top of things by actually sleeping through the night! I have 5 alarms clocks set to wake me up....I'm not kidding either. I am dead to the world in the morning like I haven't slept all night. Just wondering if I'm the only one or if other people have sleep issues related to their child's and their diabetes.

Frustrating lows and guilt

Amie Meenk — Wed, 03 Jun 2009 23:34:19 GMT

Hello all,

I am new to the group. I have been a T1 for 30 years and we found out a year ago that our now 4 year old daughter is also. I really just need to vent because I am getting overwhelmed by taking care of myself, her, a new born and everyone else. my husband helps as much as he can but he just doesn't feel the guilt I do. Tonight my Courtney was behaving badly and I thought it was the jealousy from the baby. So we were kind of bickering when all of a sudden her eyes rolled back and she tipped over on me. I instantly grabbed the blood checker and she was 23. I can almost always tell when she is low but not this time. she was going in and out of it and we gave her glucagon. She came out of it quickly but I had to walk away and cry. I feel so guilty sharing this stinking disease with her. And I know she can't understand alot of it yet but I just keep thinking that she had to know she was low.

Anyways, we are all fine now. Not sure what caused her to have a low because she wears a pump and is usually pretty well within target. i guess it was just one of those goofy things I'll call "a diabetes thing" that just happens for no reason. I really just needed to vent more than anything to others who may also feel what I am feeling right now. Thanks for listening!

Letting Go: When Your Diabetic Child leaves for College

Ann Bartlett — Fri, 22 May 2009 02:56:23 GMT

This post is on Healthcentral.com/diabetes, by Dr. Fran Cogan, MD, she is head of pediatric endocrinology for Children's National Medical Center in Washington DC.

It is May and our high school seniors have received those thin and fat envelopes determining their educational fate for the next academic year. Many will be living on their own for the very first time and have to become independent without the immediate support of parents. This task of "letting go" is a major developmental milestone for both the child and family members, especially parents (and even more typically - mothers). This transition is exceedingly tough and emotionally stressful. It is hard enough to send your child to a new environment away from the nest, but it is even harder to leave your child with diabetes in the midst of a bustling college dormitory! I certainly was no exception. After bidding farewell to my then 18-year-old son in the middle of the Arts Quad of Cornell University, I began sobbing and did not stop until arriving home 6 hours later. That first month was extremely difficult.

Now, add the additional layers of complexity in children and teens with diabetes, in which the family has played a major supportive role for many years. MAJOR STRESS!

1. Who ensures that your child is checking blood sugars at least four times/day?

2. Are they bolusing insulin for their carbs correctly?

3. Are they correcting blood sugars?

4. Do they have rapid acting carbohydrates available at all times?

5. What if they go low overnight?

6. Who is going to check their blood sugars at 3 am? (I know that parents will want to, and would if at all humanely possible! Maybe a remote blood glucose meter?)

7. Does that Resident Advisor know how to administer glucagon?

8. Who will check if my teen drinks alcohol and goes "low?"

9. What if they run out of insulin and forget to get refills?

10. Etc., Etc., Etc.

I am sure that parents could add at least 100 more concerns to this very short list. And, you do have merit in your anxieties about your young adult. So, how do the child, siblings, and parents emerge from this major transition without having severe emotional repercussions?

I have written past blogs about Developmental milestones in infants, toddlers, elementary schoolchildren, and adolescents. This particular developmental milestone (leaving the family environment) occurs as your adolescent becomes a young adult. How does one prepare for this disruption?

As with any change in family dynamics, it helps to be informed about "what to expect" in terms of child development. It is important to be prepared ahead of time so that reactions are not unexpected. Take advantage of your diabetes team to help prepare your young adult (and your family) for this major transition. As my students go through their senior year in high school, I begin to discuss different issues during each of my diabetes follow-up visits (with or without parent in the exam room):

1. The choice of the best college fit for their unique needs and personalities

2. Barriers that might occur as they move from home to college

Here are some other topics she has written on:

Getting your kids safely through airport security

Diabetes and Insulin: Types and Application

Diabetes treatment and development: Adolescence

Diabetes and PlayDates

Parent Blog: another Item to your daily list

Ann Bartlett — Fri, 22 May 2009 02:42:35 GMT

This blog is posted on HealthCentral.com/diabetes.

Beth's blog:

All parents have a "Do You Have" list of items that we bark to our kids as they rush out the door for school each morning: "Do you have your backpack? Lunch? House key? Shoes? Homework? Gym Clothes? History project requiring 1500 popsicle sticks that we stayed up to 3 a.m. to finish? How about a hug?"

If your kid has Type 1 Diabetes, the list continues: "Do you have snacks? How many? Glucose tabs? Cell phone? Glucose monitor? Insulin pen? Extra needles? Alcohol wipes? Hall pass for the clinic? Now, how about that hug?"

Yet when your diabetic child walks out the door, onto the bus and off to school, the real worry begins. You worry about if your kid has gym and if she'll be running the suicide sprints that always dip her blood sugar. Or about the science teacher that asks your child to leave the classroom and go to the clinic to check his blood glucose, meaning he'll miss more of his lab work and fall even further behind. Or that militant hall monitor who won't let your daughter go to her locker for her glucose tabs because she forgot a hall pass at home, even if she's displaying her medic alert tag. The list is endless and makes parents of a diabetic kid weak with apprehension.

To read more click here.

New Diagnosis??

Sarah — Sat, 14 Mar 2009 02:27:04 GMT

I was just looking for some parents of newly diagnosed young children to share some experiences and ideas on getting through this rough time.

What's the best way to teach our type 1 children?

John Sherman — Tue, 03 Mar 2009 22:03:45 GMT

I'm Type1 & my 8yr daughter is recently diagnosed with Type1. I have 4 other children but I notice that I "gravitate" to my Type1 child and worry I'm neglecting the others. My dad was Type 1 and I recall when I was diagnosed thinking "Oh good - Dad will know what to do". Now that I'm on the other side of the fence, I feel that I fail miserably in many respects. I'd be interested in hearing how you manage the emotional & time aspect of a child becoming Type 1 when you are Type 1. Thanks in advance for your thoughts...More later...John

The club I never expected to join

Katie Clark — Sat, 17 Jan 2009 22:31:06 GMT

Before I got married and then again before my husband and I decided to try to have a child, I talked to my endocrinologists (two different ones) and both said that the risk of me having a child with type 1 were just slightly more than the general public. This was in the mid to late 90's and just at the start of the Internet as we now know it: finding information was extremely difficult.

Those discussions made what happened in the summer of 2004 extremely shocking to me. We moved to a new city at the end of July, just a week after our oldest daughter turned four. Our old house had not sold yet, and we were in the starting stages of building a new home in our new city, so we rented a two bedroom apartment. The girls (youngest was two and a half) started at a new daycare the first week of August and both my husband and I started new full time jobs.

After the first week of August, we noticed Ellie started waking up in the middle of the night asking for water. We wrote it off to sharing a small room with her sister and being in a completely new environment. Over the next two weeks, the waking up in the middle of the night turned into waking up multiple times per night. She developed a habit and got hysterical when we refused to give her water.

The weekend of August 28th, we went up to my parents house to celebrate my 30th birthday coming up that week. We had lunch on the deck looking over White Lake and I mentioned in passing Ellie waking up asking for water. One of my mom's friends was really concerned, but I assured them that it was soooo unlikely to be diabetes, that was just silly. She had just a slightly higher risk than their grand-daughter. I told my mom and her friend we would be sure to mention it to Ellie's new pediatrician at her first visit there for her 4-year appointment.

We setup a dinner date to meet my husband's father to celebrate my birthday at 5:30pm on Monday night. Ellie had her appointment at 4:30pm that afternoon. The entire family went to the appointment to meet our new pediatrician. I mentioned to the nurse the extreme thirst and they had Ellie urinate into a cup and then we waited for the doctor. About 15 minutes later, there was a knock on the door and a man I had never met said to us: "I'm sorry, there is glucose in her urine. Your daughter has type 1 diabetes." The first words our pediatrician ever said to us and my world crumbled.

We spent that night in the hospital, and the next day, August 31st in a pediatric endocrinologist clinic. It was my 30th birthday.

This group is for those people out there, living with type 1 who lived through having their child diagnosed.