Top 3 for parents of a T!D


(Diana) #1

We have a 6 year old first grader who was just diagnosed with T1D three weeks ago.

  • If you are a parent of a T1D, what advice would you give for coping with initial diagnosis and navigating the first few months?

  • What do you wish you knew at the time?

  • What about school?

Thanks much - more questions to come.


(Dennis J. Dacey, PwD) #2

Hi Dianna @DLK,
I feel for you and can only imaging the feelings, thoughts and the confusion you are experiencing; although I’ve had diabetes for over 60 years I do not have any children or grandchildren [yet] diagnosed with diabetes - but just recently two of my sisters were relating to me that worry, concern and the “trying to learn” that My mother [and my father and my 6 siblings] went through back then - I was unaware, but I had their full, caring support.

The good news: there isn’t anything that your daughter will not be able to accomplish just because she has diabetes. As a mother, being caring and understanding will be most important, and don’t expect to learn everything right away; I’m still learning and over the most recent 20 years management techniques have moved ahead more than in the previous 3,000 years.

One thing you could do is look into the “Resources” & “Event” Tabs at the top of this page. Near the bottom of the Events Tab there is a place for you to enter your ZIP Code and find activities and gatherings near you. Monthly I attend a morning coffee near me just to support and encourage others who are going through what you are now experiencing - many of the attendees are parents and grandparents of children who have all sorts of questions to ask, and just last week the topic was how to approach doctors to get YOUR specific needs met.

My best wishes for you, and please stay in touch.


(Wendy Spencer) #3

Hi Diana

I am mom to Kate who is now 15 and who was diagnosed three and a half years ago.

  1. Coping with initial diagnosis: I found it useful to find the right support team. This included an endo I could trust completely, a dietician who could communicate with Kate, a GP with a knowledge of diabetes, a good friend to have tea with. It can feel overwhelming as a parent, as not only is there a lot to learn, but it also feels like every decision will have a huge impact. Sleep. Eat. Try to have a little fun as a family. Know there is a world wide community of people who are very happy to support you!!
  2. I wish I had known more about the relationship between emotions and stress and glucose levels. I wish I had known more about the mechanics of diabetes, especially ketones. I wish I had known how strong we all are, and that we would all be fine. You will be too!
  3. Kate was old enough to do all her own testing and injecting. We spoke to her teachers, typed instructions about T1 (what lows look like, and highs, how to treat, when to worry…) with all the phone numbers clearly marked. Each teacher had a copy at her desk. It was scary letting her go each morning, but it got easier.

I hope things go well - best wishes to you and your family


(Hillary103) #4

Hi Diana,

My son was also diagnosed in first grade. He is now 9 yrs old and in 4th grade.

Initial Diagnosis: What helped me the most was finding another like minded mom with a Type 1 child and connecting regularly with her. I was lucky enough to find her in my hometown and would text her a lot! We were on the same page with nutrition and we’re both pretty on top of things. She was a godsend. Someone like that can help you in ways that a doctor can’t. She gave me tips and tricks and helped me on the frontline with navigating new situations.

I remember so well being so completely overwhelmed and crying often. I felt such an awesome responsibility and even though we went through the training at the hospital, I felt so unprepared. So…my heart goes out to you! Hang in there, I’d does get easier to navigate.

School: I’ve been extremely fortunate to have awesome schools that would work with me. Hopefully you have an excellent nurse that will listen to you and your child and be willing adjust as needed. Managing Type 1 can’t always be by the book. Be willing and prepared to advocate for your child and speak up if you need them to do something they aren’t doing. When do the 504 plan beginning in second grade.

What I wish I knew: Just do your best, don’t worry so much. Pray often! Cut your child a lot of slack! We can’t understand what it feels like to be them. Respect her feelings and let her control what she is able to (ie if she doesn’t want other kids to know right now than that’s ok, if she wants to check her sugar and get insulin in private that’s ok too.)

Hope this is helpful! Let me know if I can help further.


(Elizabeth) #5

Hi, so sorry to hear about your child’s diagnosis. My daughter was diagnosed at the age of 3 and she is now 8. We always make appointment days special by doing a little shopping or out to eat together. There is so much to learn and I wish I would have joined more Facebook groups right away. It is so helpful having other parents to reach out to who are going through the same things. As far as school, good communication with the nurse is key. Never be afraid to check in during the day or feel like you are bothering them!


(Diana) #6

Thanks for the responses and words of encouragement. I’ve passed them along to my daughter as I’m actually the Grandma of the six year old. I’m trying to gather reliable resources and information. You all know how totally overwhelmed they are. I figured that this forum would have people who can relate. My daughter has joined, but has been just trying to keep things together and hasn’t explored the website.
I’m also a T1D, but not diagnosed til age 40. I’ve been amazed at how well the family is adjusting, but it seems like they are kind of on their own. Maybe the info was presented to them during their 2 1/2 day hospital stay, but their learning curve was pretty steep. Things like treating a severe low not only with juice, but pairing it with a protein and fat to sustain her. Or how to help a little one recognize what a low feels like. Or suggestions for sharing data between school and home. We developed a google spreadsheet which has been a lifesaver, but why wasn’t it suggested by the experts? They are in the process of developing a 504 plan, but it’s a work in progress. The school nursing staff has been fabulous, but there should also be explicit training for her teachers. I plan to develop a folder/guide and personally share the information with school staff at the beginning of each school year. There are way too many misunderstandings about T1D.
Thanks to all for continuing to share


(Dennis J. Dacey, PwD) #7

Hi Dianna @DLK ,
It is good to hear that you, your daughter and your granddaughter are making progress.
You mention about training / information school staff / teaches; our local JDRF Chapter has outreach people who visit local schools and provide whatever information is needed. I suggest that you reach out to your JDRF Chapter and ask that someone visit your granddaughter’s school.


(msab) #8

all I can say is never tell your child the cure is just around the corner, cause its not, early egicate on the complications that may arise from lax control, been type 1 60 years now so it is possible to live a good life but the key it tight control to keep her blood sugars level and in line with dr orders as in school she will not be able to keep up with her peers as low/high blood glucose readings will affect how she absorbes knowledge, its a hard hill, but if you consider all things a blessing it will get better


(Laura) #9

Hi there Diana - I’m so sorry for you and your baby - I was there two years ago. My daughter was in second grade then. Happy to help as I can. Where are you?

Advice: Focus on following the treatment plan. Keep life simple otherwise. Learn managing this really well. There will always be times numbers swing out of control, so only patient focus can help.

Wish I knew: Community is super important, especially to the child. Join local facebook and meetup groups, and setup playdates as soon as possible with new T1D friends.

School: Establish a meeting with the school and district nurse, and get plans in place for her BG check/snacktime/lunchtime/bolus schedule. Have the nurse consider checking her in or just outside of her class in order to minimize disruptions (for bolusing at times when blood sugars look in range). Plan to check in with school nurse one day per week.

Hope this helps!

Laura


(Diana) #10

Thanks so very much for the thoughtful response and suggestions, Laura. Our newest T1D is my granddaughter so I’ve cc’d my daughter Katie. The family is hanging in there, but as you know it’s a long, not always stable journey. It’s been a learning curve for the school as well, but the nursing staff had been wonderful.

Diana K.


(RichardV) #11

Hello Diana, I was also diagnosed in first grade, in 1945. I am now age 78 with 72 years of T1D. I do not have any serious diabetes complications. With your help, a good doctor (preferably a pediatric endocrinologist) and the online help you can get, newly diagnosed children can have very long, healthy and happy lives.


(Bill) #12

Hi, Diana. Some good thoughts appear above. I will add a couple based on my history of work with people who have T1, and from my 60 years of living with this disorder.

First, let me correct a comment above that is not completely correct. It is only when blood glucose levels fall below about 60mg/dl (an acute “emergency”) or persist at >240 or higher for several days (which may lead to DKA) that learning really shows much impairment. With T1 diabetes blood glucose levels are prone to “bounce around” between about 80mg/dl and 240mg/dl during the course of the day even when management efforts are excellent. So don’t worry about blood glucose levels causing a child to lag behind his/her peers in school unless the child is persistently hypoglycemic or is persistently very hyperglycemic.

Now, during an acute hypoglycemic episode useful learning is interrupted. And for about thirty minutes after the episode the youngster may have difficulty attending to information that is presented (he/she may appear somewhat obtunded). But that will resolve and the youngster will return to “normal.” So the key is to avoid hypoglycemic episodes and persistent (days-in-a-row) hyperglycemia.

As far as the emotional side of this issue is concerned, I would suggest two things. First, dispel the idea that anyone did anything wrong (i.e., did anything that made the child develop diabetes). Guilt can really hamper successful management of diabetes. No one is at fault. Diabetes “just happens.” I can’t count on two hands the number of children who told me they thought they developed diabetes because of something they did. And the same is true for parents of children who have diabetes. (This is a complex topic that is too involved to adequately address in a social media post). The point is, no one is at fault.

The second thing I would suggest is this; lots of hugs! You might be amazed at how much it means to a youngster when mom, dad, siblings, or whoever sits down with the affected child, gives them a hug, and asks, “How ya’ doin’?” The conversation can start from there, include “We’re gonna’ wrestle this bear together,” discuss the mechanics of painful shots (e.g., where shots hurt less, don’t stick your fingers in the pads - use the sides, etc.) and help the child know he/she is not alone (they learn people are truly interested). When these kinds of conversations start in grade school it makes it much easier for the child when he/she hits the teenage years - it opens lines of communication that will stay open as those tough teenage issues begin to surface. The self-confidence and self-worth that they develop will support them the rest of their lives.

But, after a “hug session,” get up and “do normal stuff.” In other words, get up and do those things that you would normally do with the child if he/she did not have Type 1. Consciously develop the sense that “we’re in it together and we’re normal.” If you allow the hug session to go on for too long the youngster may develop the impression that “being sick” is the way to get attention. That doesn’t work well, for anyone. So plan what you are going to do after a “hug session” well before you sit down with the child to ask how he/she is doing. You’re shaping functional behavior - that’s what we do as parents. You’re just having to add in the “extra” of managing diabetes. (These “hug sessions” can actually bring families closer together, but that’s another topic.)

Hope this makes sense. And good luck!

Bill


(janmosso) #13

Hi. I was diagnosed with diabetes at age 6 way back in the olden days - 1963. My parents were cool, calm, and collected, or so I thought. They were very good actors because I imagine they were freaked out at first. They learned as much as they could about diabetes and taught me all about it. They spoke with my teacher and the school nurse and taught them as much as they could. My mom helped me put together a presentation about diabetes for my class. I made a big poster with words and pictures and gave a first grader’s rendition of diabetes and how to manage it. Afterward I answered my classmates’ questions like a little professor. It was fun for me and I liked being the center of attention for the day. Kids continued to ask me questions throughout the school year. Doing the presentation made all my classmates aware, increased my teacher’s awareness, and taught me how to talk about diabetes to people who knew very little to nothing about it. My parents had a positive attitude about my diabetes management and this was reflected in my attitude about it and in the way I shared my experience with others. I continued to give presentations on diabetes in my subsequent grade levels. Over time I became more adept at taking care of myself, and my parents could relax more. I will say that I could have used more of a firm hand in resisting childhood impulses to eat junk food and candy. I knew better, and was sneaky about it. While you don’t want to scare your child, I would have done better if I had known at an earlier age about the complications of high blood sugar. But all in all I have done pretty well and am alive to tell about it. I hope this helps.