Just Found Out 4 Year Old Has Type 1 Diabetes.

Updated on July 03, 2011
M.H. asks from Pine Bluff, AR
23 answers

Hi ladies,
We just found out that my youngest daughter has type 1 (juvenille) diabetes. She just turned 4 about 2 weeks ago, so she is still very much a baby. We were at Childrens Hospital and went through all of the classes they have to teach parents how to deal with the disease. However now that we are home, I am terrified that I am going to do something wrong. My husband keeps telling me that I am overthinking everything. But I can't help it. I mean, I took my daughter for her four year old check up, told the doctor that she had been having alot of accidents at night, and ended up in the hospital for 4 days. I honestly thought they were going to tell me that it was normal for children her age to wet the bed. Instead they tell me that my baby has a life threatening disease that will never go away. Now I have to check her bloog sugar about 7 times per day and give her insulin shots 4 times a day. The whole time she screams " No Mommy! I don't want it. I'll be good." because she thinks that it is some kind of punishment (she doesn't understand). And afterwards she screams, "I hate you!". I can't say that I blame her. I guess after saying all of this, I was just wondering if there was anyone else out there who has been through this? Of so how did you deal with it? Any advice would be helpful. Thank you.
M.

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So What Happened?

Thank you all for your prayers and support. Things are finally starting to get easier. She still cries when we give her the injections, but it isn't as bad. She isn't screaming that she hates us now. I am learning as much as possible, as fast as I possibly can. I am still worried constantly, but that is getting better too. I guess it is just going to take time. Please keep us in your prayers, and thanks again.
M.

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E.A.

answers from Oklahoma City on

Marci,

I can only imagine how overwhelmed you must feel. One of my best friends is going through this too. Her daughter was 5 when she was diagnosed 6 months ago. It does get easier, I know that is easy for me to say. I know Reagan has finally accepted it as a routine thing. They got her on the pump about one or two months ago and I think that is what has helped the most. You have a lot to think about and concentrate on. I know they also joined a support group, where she could go and meet other children with diabetes. I am not being much help, but just wanted to let you know I think the support group is what helped Angela (the Mom) the most! Best of Luck!!!!

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M.M.

answers from Fayetteville on

My heart goes out to you. I do not have any children but I want you to know that you have moral support here.

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S.B.

answers from Oklahoma City on

How frightening for you! No wonder you are "over-thinking" things. I want to add my encouragement to those who have mentioned nutritional supplements. The Mannatech company has terrific, standardized products and they provide them at cost to children with chronic diseases. Check out my Web site at susanjordanbrown.com. I'll put a link there to MannaRelief where the products are provided. Doctors with the company will set up a protocol for her. I'll be glad to help you in any way if you are interested. By the way, this is my home business (and a terrific one!) but I don't make money on sick kids, and neither does anyone else in the company. They are terrific folks!
S. B.

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A.K.

answers from Elmira on

Hello my Friend, My name is Angie and my 2 year old daughter Ava Rain has just been diagnosed with Type 1 diabetes 10 days ago, so I can truly relate to your post. Yes, it is truly frightening and causes me much anxiety 24/7. I have been contacting the JDRF and found support groups and others just like yourself with newly diagnosed little ones.
My daughter has a stuffed puppy that she pretends to check blood sugars and give insulin too. We snipped the needle off a syringe and she uses this to give him insulin and asks ""puppy feel better now??"
She insists we check the puppy's sugar first before hers, now she sometimes tells us what finger to use.
There are continuous glucose monitors out there for about $1000 without insurance but not FDA approved for children. I would still use one for piece of mine ...especially during the night hours. Our daughter will be a good canidate for an insulin pump too sometime in the near future.
I'm thinkin of you and your daughter tonight and will say a prayer for the two of you. The only thing that keeps me going right now is by telling myself...""this is manageable, not terminal"..
God Bless you,
angie

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S.B.

answers from Oklahoma City on

Hi M.,

Just wanted to say that I am so, so sorry that you and your family are having to go through this. As a Type I diabetic myself (since I was 8), I am intimately familiar with all the difficulties of this disease, and as a mom of a 2 year old now, I can only imagine how heartbreaking it must have been for my mom to go through my diagnosis...so again, I'm so sorry for your pain.

I think some of the other responders have a great idea in searching the internet for kid-focused information for your daughter, and for a counselor of some sort that she can talk to about it. If you had someone you could talk to about all your feelings and struggles dealing with this disease, I bet that would help too.

Also, I suggest you try to make contact with the diabetes bloggers' world because there you will find so many caring people, support, and maybe most importantly, people who have been there before.

In addition to the great ADA website, there's The Diabetes OC (online community) at http://diabetesoc.blogspot.com/ and Dlife is pretty great too (http://www.dlife.com/). And maybe Diabetes Self-Management (http://www.diabetesselfmanagement.com/) will have some good ideas to help you learn to manage your daughter's health, and eventually, help her learn to manage her own health.

I'm sorry I don't have more advice for your daily life, but I have faith that you'll find the right balance...You're her parent, you will know best how to help her! =) My parents didn't keep my blood sugars absolutely perfect, but they did the absolute best they could, and never made me feel bad for highs or lows that were out of my control, taught me to strive to be proactive instead of guilty, showed me how much better I feel if I take great care of myself, and I am very grateful to them for all they did.

By the way, is a pump a possibility for your daughter? One shot every third day instead of several a day can make a huge difference.

I know it's a huge amount of information to take in and a huge physical and emotional adjustment to your lives. Your daughter is so lucky to have you on her side. Best of luck and God bless!

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J.B.

answers from Montgomery on

Hi M.:
Just wanted to offer my support! I am Type 1 diabetic (24yrs diagnosed), but fortunately my daughter is free of the disease for now.
There is a camp (Camp ASCAA) near Auburn that holds diabetes camps called Camp Seale Harris. There are family weekends throughout the year. This would be a great place to go and meet others in your same boat. I think there is also Camp Sugar Falls somewhere around Birminham, but I don't know much about it.
Somewhere on the web (i'm sorry I don't have the website address) there is a kids diabetes website. Maybe there is a link from the American Diabetes Association website. I believe there is a kids section there.
We have had our daughter tested several times, so I have experienced the fear of the diagnosis. God Bless you and your family!

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S.H.

answers from Gadsden on

My daughter was diagnosed w/Type 1 Diabetes right after her 2nd birthday. My father had passed away 2 years prior due to complications of diabetes. And I was four months pregnant w/our second child. It was devastating to say the least. I couldn't believe that they just let us leave the hospital w/her and her long list of what to dos and what not. The shots, checking sugar and counting carbs was a total life change. She was so tiny and did not understand what was going on. Just the thought that her sugar was 806 and she should have been in a coma was more than I could bear. Then if I didn't keep her in check she could still be there?? I had to physically hold her over my knee and with one arm and stick her w/the other - all with her wrestling me! She would scream like I was killing her!
Okay with all that said, yes you are going through a truly tramatic, life changing situation. As a mom we are supposed to take care of our children. As a mom it is hard to give our children shots and check their sugar. When my daughter gets out of the tub and her fingers look like raisins - I can see tons of holes in her fingers from all of the sugar checking. It breaks my heart! When her sugar is high or low and she is acting horrible, I want to get so mad at her - but she can't help it.
However, God has entrusted your child to you and as He has mine, b/c he knows that we will go to Him for strength and support when we are weak. And He knows that we are weak. He puts other people in our paths that have walked it before that can help us.
We are almost 7 years into our "disease" and we are okay. Things will settle down a bit in a couple of months. You just have to get over the shock of it and change your lifestyle. I hope this is somewhat helpful to you.
(And about the little holes in her fingers - they don't even bother her!)

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A.C.

answers from Little Rock on

There is a website called caringbridge.(you can google it, I can't remember the actual address!!--sorry!!)..you really need to check that out!! It is for the family of sick children--you can get advice from parents in the exact same situation you are in!! It is wonderful!! You may even find people near where you are!! I recommend this site to everyone with a child with some type of illness

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C.G.

answers from Huntsville on

I can't identify with your situation from my own experience, but I DO feel your pain!
You and your daughter will be in my prayers that things will get better!
Hugs,
C.

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L.C.

answers from Monroe on

Hi! hope all is well for you and baby girl. U just lit my heart reading this. I have not had to deal with this, but i'm saying to you, be strong and take care of baby girl, tell her it's for her own good. give her a sugar free treat when u finish. I hate this for you all at early age on. just love her and continue to ask the Lord to remove this illness she may have. feed her right and exercise, she will get away from this insulin soon. take care.

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B.L.

answers from Oklahoma City on

Wow! So much to deal with all at once. Call the hospital and ask about support groups for children with diabetes. You need to learn from all the info those other parents have and your daughter will enjoy meeting other kids that have to get shots too. (especially when she is a little older, she will like having peers dealing with the same thing.) There are day camps and sleep away camps for kids with diabetes too.

it is overwhelming right now, but there has to be people you can get connected to.

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S.B.

answers from Phoenix on

Hi:
My Son and Daughter in law just found out their 4 year old son, Amos, has Type 1 Diabetes. He doesn't cry at the shots, usually, and is very brave, but it is so HARD! Nadia, my daughter in law is pregnant, sometimes suffers from depression, and my son works long hours. They don't have any insurance, and right now she could really, really use a friend who is in the same situation. Do you know of any support groups or friends groups for young mothers facing this challenge. She lives in Phoenix, Az.

Thanks,
S.

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D.D.

answers from Oklahoma City on

Hi M.,
Wow! What a bad week! However, At least you found out before your baby got worse. I do have some nutritional suggestions. There are nutritional supplements out there that can help people regulate their blood sugars, sometimes they help a lot. It just depends on the person and how bad the diabetes is. You might look around for some nutrionists in your area.
I know that there are some really great companies out there that have products, you just have to find some that help you and that you can trust. Many times the diseases that we have come from imbalances in our diet. This does NOT mean that you were a bad mom. Let me set that straight right now.
With our culture the way it is, everyone wants everything right now. This includes our fruits and vegetables. Therefore, almost everything is harvested early before the fruits and vegetables are ready. They do not get the last boost of nutrients, but even if they did, it wouldn't help. Most of our country has overworked the ground to such a point that many of the nutrients are lost.
You can find magazine articles, newspaper articles, college and university studies that prove this is true. You won't hear about this in the mainstream media. You can feed your child all the right things while she has this disease, but it will still get worse because of circumstances beyond your control. Doctors will blow this information off unless they have done nutritional studies.
You and your family still get nutrients in your food or you would not be alive, but you are also getting a lot of other things as well. Many crops are dusted with pesticides and fertilizers. Most animals are given steroids and antibiotics. These chemicals stay in the food to some extent.
Therefore not only are you getting a little nutrition that you need, but you are also getting these chemicals that you don't need! This creates free radical damage in the bodies and causes many of the diseases that we have.
This is why it is so important to find a really good nutritional company that knows how to use nutrition to help you and your family with this problem. So saying, Let me make this statement..... NUTRITIONAL SUPPLEMENTS DO NOT CURE A DISEASE!!!!!!!
Nutritional supplements allow the body to have the nutrients that it needs so that it can take care of the body functions. Some supplements help more than others. Each persons body is unique. What may work for one family may not work for another.
Personally for our family, we use two companies. One is called Goldshield Elite. It also has the very old W.T. Rawleigh company with it. We love the food that Rawleigh has produced for years, and that is one of the reasons that we joined. The other reason is that we know the quality of the Goldshield Elite Company. They research everything out before they jump on a band wagon of the nutritional supplements. These are only sold through authorized distributors.
The second company that we use products from is called Professional Botanicals. We found these products about ten years ago when our youngest son was having a LOT of earaches. We started using their ear drops and then this last year we started using other products from this company. We didn't know that they sold other items until we had to go search on a source for the ear drops since our other source went out of business. These are also only sold through authorized distributors.
Most really good supplements are sold through authorized distributors. Sometimes this is individuals and sometimes it is through nutritional stores. I would highly suggest that you find something that works for your darling little baby. I know how hard it is to have to deal with the poking and sticking! When my baby girl was born(now three years ago), the nurses told me that her biliruben was way too high. They took my baby twice a day to have her little foot poked and blood drawn. Her feet looked like raw meat when they were done. We had to stay a whole eight days in the hospital just for her! Then our pediatrician said that the hospital where we were at didn't need to do that and that my baby girl would live and be just fine! I had thought till then that she was going to die! I lived each day dreading and wondering when it would happen! The thing that I still hate the worst though was making my baby girl go through all the sticking for the blood drawing.
I hope that this will help you to understand that this situation was not caused by you and that you are NOT a bad mommy. Most people just don't know how this can happen to a little baby. This is how and why. We can still turn our situations around though. There is hope!
Have a wonderful life with your darling little girl!

Sincerely,

D. Douglass
wife to Terry, mother of four
Distributor for Goldshield Elite and
Professional Botanicals

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A.W.

answers from Mobile on

Dr. Mercola may be able to offer some alternatives.
Have you ever checked out his website?
You can sign up for his newletter and search heaps of great info on his site.

I also love Jon Barron's website.

They are both such fantastic natural alternative resources.

Sooo sorry for what you are going through.
Praying for you and your family right now.

Please keep us posted.

Blessings,
AnneMarie

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A.P.

answers from Birmingham on

Hey M.,
25 years as a juvenile diabetic have taught me a lot of things. First, nobody knows your child like you do, BUT some of her inconsistent behavior, mood swings, anger... can all be tied back to having diabetes with uncontrolled blood sugar. No, she doesn't hate you, she just doesn't understand. Camp Seale Harris and Camp ASCCA are wonderful places. I've been going there for the past 25 years, from camper to senior staff. This particular one has a family week, but after I pulled your history and saw that you were from AZ, that is probably out. There are several other camps out there as well as websites, books, etc. I just had to send one out to a friend that is in the same situation, so I'm going to post several here for you. The insulin pump is an exceptional way to go. I didn't go to it till I had my second child and only b/c of what my blood sugars were doing at night. I had very good control, but now it's ranking as if I'm not even diabetic. I wouldn't go back to shots now unless the pump died, but that's an individual decision for everyone. Good luck with everything and let us know if you need any more, or more specific help.

American Diabetes Association: http://www.diabetes.org/home.jsp
Juvenile Diabetes Research Foundation: http://www.jdrf.org/
Diabetes Camps: http://www.childrenwithdiabetes.com/camps/
Children With Diabetes: http://www.childrenwithdiabetes.com/
Insulin Pumps: http://www.diabetesnet.com/diabetes_technology/insulin_pu... (Minimed & Animas)
Diabetes Life: http://www.dlife.com/
Teen site: http://www.diabetesteentalk.com/
Research & Product News: http://www.diatribe.us/home.php

A support group would benefit you greatly. It gives you a group to pull ideas from as a parent, plus gives your daughter some friends that are in the same boat. Sometimes it helps to see all the other diabetic kids having to do the same thing. I learned more of what I know about being diabetic and dealing with it from going to camp (started at age 7 for 2 weeks) than I ever did from any doctor out there. Kids learn better from kids, and don't fight it as hard.

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R.C.

answers from Montgomery on

Hi,

I'm sorry to hear that your daughter has diabetes. I've never had to deal with my children being type 1 diabetic, but I am. I can totally understand your daughter's attitude toward everything. I understand what's going on and have been doing this a long time and I still am not crazy about checking my blood sugar or my insulin shots! I guess you just have to look at it as you do their immunizations. Not something you want to do, but you know in the long run that it's neccessary. I've never really thought about it before, but do they not make a video on a child's level to help them understand? May be worth doing some research on. I can tell you that I went to church with a woman who has a diabetic child. She is now a grown, well-adjusted, married woman. She uses a pump now and has been for years. Her condition also inspired her older sister to become a nurse-and a very good one at that. My thoughts and prayers are with you. Just keep up the good work. Read, read, read, everything you can get your hands on about diabetes. The more you understand, I think the more comfortable you'll feel about everything. But whatever you do, make sure that any of your sitters are well educated in how to take care of her. Insulin can be a dangerous tool in the wrong hands. I am glad that she was diagnosed so early. I was grown before I was diagnosed and it's extremely hard to break bad eating habits! You can do this-ya' know why? Cause you're the mom!

Take care and good luck,
Rachae

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G.F.

answers from Tulsa on

You might check with your doctor and see if there is a better way to draw her blood that might be less painful for her and instead of shots see if they can give her insulin pills. You might also check with your local library to see if they have a book that you can show her and read to her to help her to understand what you are doing and why. As her mother I know it is hard, but if you will relax and start to treat it as if it is no big deal, maybe even poke your own finger in front of her to show her it is ok, that may help her to relax as well. Best of Luck to you
G.

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M.G.

answers from Biloxi on

No advise for you M., just wanted to let you know that you are doing a great job and try not to let it get to you too much. You are doing what is best for your baby's helath. Hang in there.

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L.J.

answers from Birmingham on

Mother's do always tend to worry about caregiving more than dads so you are doing the typical mommy thing. We are so consumed with love for our children, that it's hard to feel any other way. Please remember this is a disease that can be monitored and treated. What a blessing. I have seen stuffed animals for sale at Walmart that have medical kits with them and they have to be cared for. Maybe this would help her to act like a nurse and care for them. I know when children get shots at the dr. they get a sticker or something. Can you order/buy one a sticker book and let her put one on the back of her bedroom door each time she gets a shot. (You can paint over them in years to come!) It sounds trivial but it is some sort of reward system and she can see how well she's done each time. I have to agree, if my daughter had to receive daily shots, she too would fight me terribly so my heart breaks for you to do this. We will pray for this transition to go more smoothly.

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K.K.

answers from Huntsville on

M.,

I don't have a child with diabetes, but I do have one with potentially life-threatening food allergies. At one point, she could not come into any contact with peanuts, tree nuts or eggs/egg products. The allergies were diagnosed at about 15 months and I, too, was terrified that I would do something that would threaten her life. I educated myself, and eventually adjusted to the changes that were required in our family life. But, the most importanat thing I did was to inform my child of her allergies. By age 3, she would tell anyone that gave her food that she had allergies and would ask specifically if any of her allergens were on the ingredient list. By age 5 or 6, she would check the ingredient list herself. I think that your doaughter can understand more than you think. Some simple explanation would go a long way to help her deal with the daily routine. We explained that this world is imperfect and that all people are imperfect - one of her particular imperfections just happened to be allergies. Your daughter's is diabetes. We have never over-protected or babied our daughter. We have been straight with her regarding the dangers, and have also been clear about her future. She is not likely to ever outgrow her peanut allergy (which is the worst one), but there are lots of things in this world worse than a peanut allergy - and even worse than diabetes. Help her to understand the seriousness of what she has, but also the positive prognosis when she follows her treatment.

I am so sorry that you are having to go through this. I have several friends living full, healthy lives that were diagnosed as young children with type 1 diabetes. Keep that future in mind and don't get all caught up in the negative aspects. Help your family to be thankful that there is a treatment. How you deal with this will have a huge impact on how your child deals with it.

God bless.

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L.S.

answers from Little Rock on

First M., you are so courageous. It's always a challenge with our little ones to be aware of what they are going through daily. I'd like to applaud you for your great attention to this issue and your caring towards your daughter. Here are a couple of websites that I found that hopefully will be helpful for you:

http://kidshealth.org/parent/medical/endocrine/type1.html
http://www.healthsystem.virginia.edu/uvahealth/peds_diabe...

I would also encourage you to keep telling your child that there is absolutely nothing that she did to get this disease and continue to keep loving her.

Good luck to you!

L.
www.stcmemoriesfriends.ning.com

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M.L.

answers from Tulsa on

M., 4 seems to be a challenging year for a lot of kids. When my son was 4 he ended up in the hospital for 10 days because of a ruptured and then abscessed appendix. He never complained and was so brave. Later though- when I took him for a follow up CBC he screamed and begged. It was horrible.

I would suggest outside intervention and counseling for your daughter. I know she is only 4 but she needs someone other than Mom & Dad to tell her that what Mom is doing is necessary. There are some great pediatric nurses and other support people out there.

Good luck. Keep searching. M

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K.S.

answers from New Orleans on

Dear M.,

I understand what you're going through. Our son's had a lot of medical needs over his lifetime and was terrified every time we had to have blood work (which was often). He'd run away down the hall and the lab tech and I would have to chase him.

I can tell you it does get better and she doesn't really hate you. We worked very hard at getting my son to be part of his team when we needed medical procedures done. He has Down syndrome so getting him to understand was difficult, but finally, when we tapped into his desires to "do a good job" and get praise, he became cooperative although still upset.

He's 7 now and walks into the blood lab and sits on the chair without running away. He cries, but he is very brave and tells me that he did a good job when he's all done.

Regarding your child's diabetes and "over thinking" it. It will take you some time to adjust so give yourself some slack. It's okay to over think now. You will adjust.

I am the Program Supervisor for the Louisiana Family to Family Health Information Center. I have information I can send you on what schools need to do for children with Diabetes, getting medical needs paid for and connecting you to other parents of children with diabetes for support. If you are interested, Please call me at ###-###-#### or 800-331-5570.

We can also help you navigate the medical insurance and payment system with advocacy support if you need to appeal something and we have a lot of other resources for familes.

We are a non-profit and all of our information and services are free of charge to families.

K. Scallan
Program Supervisor
Louisiana Family to Family Health Information Center
A Statewide Program of Bayou Land Families Helping Families
204 East Bayou Road
Thibodaux, LA 70301
###-###-#### or (800) 331-5570
Fax: ###-###-####
Email: ____@____.com
Website: www.blfhf.org click on "F2FHIC" at the left

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