A parent with an 8 year type 1 diabetic

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kimmieo Posted: Wed, Jan 21 2009 2:45 PM

I just found out at the end for September that my 8 year old is a diabetic. It's been a long road and I get frustrated everyday. I know that she is going to be ok but as a parent I feel like I have done something wrong. I know it's not my fault but I can't help think that it is. I have been trying so hard to not let her see how much I hurt for her. How has everyone else with children who are diabetics deal with this?

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Terri replied on Wed, Jan 21 2009 5:01 PM

I have a 16yr. old who was diagnosed 4 years ago. My experience is it is up and down, and can only speak as a Mom. Days go by and we "deal" and there are days were i want to scream at the syringes. Also up and down on she will be ok, and occasionally get depressed on how it changes her life; like going to college will not be the same. That stuff I keep to myself, because she's dealing with enough and in 4 years she has verbally complained about it twice.  Unfortunately I have found that only parents of children with diseases like this can understand.

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dmmom replied on Wed, Jan 21 2009 6:30 PM

I've been told by many that this will get better with time. My daughter was diagnosed in August '08 and I can totally relate to your comments. We are just starting to think about getting her a pump so I logged on tonight to learn more. Two of her classmates have been diagnosed with Type I also. Strange and sad yet it does help to have folks who understand what you're dealing with. 

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Short-Jan replied on Thu, Jan 22 2009 12:26 AM

Please allow me to add a few comments. I was diagnosed with type 1 at the age of 8, 53 years ago. I'm also a mother and grandmother, so I certainly understand your concerns for your children.

Be honest with your kids. Your anxiety and confusion isn't something you can hide. Establish a solid relationship with a Certified Diabetes Educator and ask questions. Allow your kids to ask questions at appointments. It's their disease and they will need to be as responsible for the management of it as they are able. Join and participate in a parent/child type 1 support group. Be sure to communicate with your child's school. It's absolutely necessary that the school administration knows to contact you with any concerns or issues. Low blood sugars happen even when all the rules and regulations are being followed. Be persistent and make sure that both the administration, teachers and coaches  know how to correctly treat a low.

And remember to keep breathing. Although it takes diligence and attention to many details, it's certainly possible for you and your kids to enjoy life.

Take care,

Jan

type 1 dx. 1955

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First of all I want to reassure you that you did nothing wrong and there is nothing that you could have done to prevent your daughter from having diabetes.  When your child is diagnosed with diabetes it is very common to experience a lot of different emotions including feeling frustrated.  Diabetes can be a very tiring and challenging disease to manage.  There are things you can do now though to take care of your daughter to help make sure she leads a long healthy normal life with diabetes.  One of the most important things you can do for your daughter is to make sure that you find a health care team that is knowledgeable about pediatric diabetes.  At the Joslin we are lucky to have a multidisciplinary team that includes doctors, nurse educators, nutritionists, family support staff and child life specialists.  You may want to ask your daughter’s health care team if there is a family support specialist that you can meet with like a clinical social worker or psychologist to talk about some of your frustrations and feelings.  I am also glad that you found these discussion boards so you can talk to other parents as well and you may also want to consider joining a local support group. Good luck!

-Debbie Butler, LICSW, CDE

 

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Terri replied on Thu, Jan 22 2009 1:05 PM

Debbie, just the person I was hoping would chime in. Just got off the phone with the Pediatric at Joslin to make an appointment for the 16 yr. old for complete evauation and second opinion. Not sure message board is place to chat, never used one before.....but was hoping to talk to someone about what you do, and where we are currently. Terri 

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At the Joslin in Boston we have a behavioral and mental health unit composed of clinical social workers, psychologists and psychiatrists. Our job is to meet with patients and families about the emotional side of diabetes and to discuss ways to cope with both diabetes and non diabetes specific stressors.  I am the clinical social worker in Pediatrics and we also have a psychology fellow that works in pediatrics as well.  If you would like to make an appointment with myself or our psychologist you can call 617-732-2603 and you should be able to make an appointment on the same day as your medical appointment.  We look forward to meeting with you.

 

-Debbie Butler, LICSW, CDE

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Terri replied on Thu, Jan 22 2009 1:27 PM

only looking for the medical side. emotionally she's good.

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That is great that she is doing well emotionally.  You can still call 617-732-2603 and just tell the person that answers the phone that you would like to bring your child here for a consultation and you would like to meet with different members of the medical team (doctor, nurse educator, and nutritionist).  You should be able to get all of the appointments on the same day.   The providers that you meet with will discuss and evaluate your child's current diabetes regimen and discuss any concerns that you have.  After the consultation you can decide whether you would like to transfer your care to Joslin or continue meeting with your daughter's current provider.  We also have 2 great child life specialists that your daughter can meet with before or during her appointments. Good luck!

 

-Debbie Butler, LICSW, CDE

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Kimmie,

I'm sure you are right that most of us can't imagine the day to day toll that being the parent of a diabetic kid must take.  I found parenting to be taxing enough with a perfectly healthy little girl.  Still, her prospects are very good in this modern age.  If she has any interest in football,  make her familiar with Jeff Cutler, quarterback with the Denver Broncos, who earned a Pro Bowl spot this year despite being a type I diabetic.  I'm sure that your daughter does not aspire to a career in the NFL, but I think he's just one of many examples of high performers in competitive, demanding areas who succeed despite being type I diabetics.  This is of course, a recent phenomenon, it wouldn't have been possible fifty years ago.

I'd also urge you to see if your library has any of the books by Dr. Richard Bernstein.  He was diagnosed as a type I diabetic at age 12, became the first known patient to monitor his blood sugar, and in doing so, discovered that a low carb diet produced the best blood sugars.  As a result of frustration in no one listening to his experiences in self monitoring blood sugars and eating a low carb diet with exercise, he went to medical school relatively late in life.  He is still practicing medicine as a diabetologist though he is in his 70s.  He sometimes appears on the DLife TV series.  His book is much more than about diet, and he has useful information about injecting insulin and exercise.

 

 

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amy replied on Sun, Mar 1 2009 3:52 PM

hi,

my 8 year old daughter was just diagnosed in the middle of January so I know exactly where you are.  i think i am still in shock.  it seems like ie has been a year and it has only ben a little over a month.  is that possible?  I am exhausted and am constantly scared that i am going to do something wrong and hurt her.  her sugars have been great she is down to 3 units per meal and she is doing great so i know we are doing the right things but it is still scary.  i think i am also still angry at this whole thing because it is not fair.  all we heard in the hospital was how she is a normal kid and she can do all the same things her friends do.  In one since she is but she really isn't.  they don't have to do finger sticks and get shots 3 or four times a day, they don't have to count their food and eat at certain times.  they  don't have to go to the nurse twice a day.  again she is doing great with it most days.  there are times when she gets angry and says why am i different but we just hold her and tell her it will be ok and she goes on about her day.  it is very hard.  i want to ask for help from family but i am afraid they won't do it right.  i know that sounds crazy but it does worry me.  i have gotten out to have my hair done but other than her being in school i am with her.  she doesn't even want her dad to do the shots and he has done them but she only wants mommy.  i am so very proud of her though for the job she has done with all of this.  just thought i would let you know you are not alone, i share your pain.  i almost cried when i read your post to know that i was ok and my feelings were normal.

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Spirit replied on Sun, Mar 1 2009 8:50 PM

Amy:  I am a Mom, but not the mother of a diabetic child.  However, I know two T1 children well and have subbed in classrooms with kids who are T1.  As another poster pointed out, parenthood by itself can be a roller coaster adventure as the child enters each new phase of development.  And then you add in another component like a chronic disease...WHEW!  However, as you go along you will probably come to appreciate how truly adaptable kids are.  True, most of your child's classmates will not have to  monitor their food intake or visit the office/nurse with great regularity.  The odd thing is, after a while, this IS normal for them and neither they nor their friends think anything of it.  Usually, the kids get to this level of acceptance before Mom and Dad do.  One first grader was showing off her pump to her classmates, who thought having such a high tech gizmo was the height of coolness!  And going to the school office to check her glucose level with her Mom by phone...her classmates were jealous of that special privilege.  It does take a while to get to this level of everyday dealing with this disease.  In the meantime, the parents I know who had to deal with this cried a bit, worried a lot, had a hard time letting go of the responsibility of shots/food/readings and wanted to be with their child 24/7 to deal themselves with any issues that came up.  Little by little, they settled into a routine and so did their child.  Little by little they let their child assume more responsibilty for day to day management (with clear understanding that parents were only a phone call away if questions needed to be asked).  Give yourself and your child time to adjust to this new curve ball thrown your way.  But realize that adjust you truly will!  Having a support group or CDE (Certified Diabetes Educator) available to you can be a godsend, even if you do not realize it quite yet.  There are many steps to making this thing work and sometimes you need someone else with a more long range vision to guide you to that next step, even if you don't quite see it yourself.  Learn to rely on the professionals for this guidance.  Take heart, it is a tough road, but you can navigate it!

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Molly replied on Mon, Mar 2 2009 10:30 AM

I have an eight year old with Type 1 and he's was diagnosed in October 07. The best advice the doctors gave us in the first few months was to just act like this was part of everyday stuff just like brushing your teeth. He said that if we wanted to be upset not to show the child. I thought this was a little cold at first but it has worked well for our son. As far as age goes 8 has been a good age to tackle this. My son is really strong and I have learned a lot from him. He is proud of how well he manages his diabetes and he just got the pump and now he really has control. Take it one day at a time and next year this will be old hat!

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kimmieo replied on Mon, Mar 2 2009 3:48 PM

Hi Amy,

I thought I was alone at first too but as I kept reading different books and articles, I felt better about everything. No parent wants their child to go through what our children are going through. Ask your family for help and no it doesn't sound crazy. I felt the same way and sometimes I still do but the more support you have, the better you can handle this more. My daughter still hasn't had a sleepover at her grandmother's house because I don't want her to be away from me. I still have a hard time and I think as parents it takes us a lot longer to realize this is our child's way of life now then they do. Also in my case it's different because her father and I are not together and we have to rely on each other more now than before. The phase with her father will change. Anytime a child gets hurt, sick or when something is wrong, they always want their mommys and that's ok. She just needs some time. For awhile my daughter wouldn't let my husband give her a shot, so one day as hard as it was, I went out with a friend. I left about an hour before she needed to get her shot. When it was time she had no choice but to have him do it. I know it might seem a little mean and cruel but I had to do it, not just for her but for myself too because I was getting exhausted and was drained of all energy. I was still getting through the after wedding things that had to be finished when we first found out.  As time goes on it will be much easier and she won't know the difference. There will be days when she'll ask why me and get angry and they way you are handling that is great. as long as she doesn't see you get upset about it, everyone will be fine. Anytime you feel like you just don't know what to do or what to yell at the world for what's happened to your daughter, please send me a message and I will help you and we can do this together. No one needs to do this alone even if they feel like they are. Stay strong and know that she is much healthier than before because her body wasn't functioning like it should have been.

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