Juveniel Diabetes - Type 1 - Jonesboro,GA

Hi! Are you a participant in the TEDDY study? It's an international study that focuses on Type 1 diabetes - my son was tested at birth to see if he was genetically prone to develop Type 1 and he was. So we got involved in this study. They are a great group of people and may be able to provide advice and support as well as put you in touch with other parents with kids with Type 1. The study coordinator is Leigh Steed, E-mail: ____@____.com is their address and phone number:
1100 Lake Hearn Drive, Suite 300
Atlanta, GA 30342
###-###-####

Best wishes,
T.

Dear S.,

I am so very sorry to hear of your son's diagnosis. I understand exactly how you are feeling. My own son Jacob was diagnosed on July 3, 2004, when he was 4 yrs old. I too was emotionally destroyed - or so I thought. I had great feelings of guilt. What could I have done differently? How could I have prevented this?
This may sound harsh, but you have to ignore those feelings, at least for the time being, and focus on your son. He needs you & your husband now more than ever before. You have to be strong for him.
Having a child with diabetes is very difficult. At first, it can seem so totally overwhelming that you don't know how you'll make it through the day. When I had to inject my son with insulin for the 1st time, I cried. I didn't think I'd ever find the strength to do it. (It actually still brings tears to my eyes as I think about it.) We were so lucky to have an incredible diabetes educator, who is a type 1 herself. She looked at me & said, "If you don't do it, he will die." You have to make a conscious choice to do whatever needs to be done to take care of your son. It's not easy. Luckily for you, your son is young enough that he will adapt very quickly to his new lifestyle of finger pricks & insulin injections.
As he gets a little older, things will get easier & he won't ever remember life any other way.
Read every book you can get your hands on. Find every website about type 1 diabetes. Join every support group that you can - online and off. There are so many of us out here that have been where you are. Call your local chapter of JDRF. They will connect you with other type 1 parents in your area. They also send you a "Bag of Hope" filled with information & tools & a stuffed bear named Rufus, who has type 1 diabetes as well. He'll most likely become your son's new best friend because he gets shots too!
My thoughts are with you & your family. Stay strong and remember your son is counting on you! You can do this!

PS - There are some endocrinologist's offices that have a social worker on staff. If yours does, take full advantage of this service. I know our endo had one in FL & she was a tremendous help to me and the other non-d members of our family.

www.childrenwithdiabetes.com
www.jdrf.org
www.diabetes.org
www.diabeticquest.com
www.dlife.com

Have you met with a diabetes educator? Is your son seeing a pediatric endocrinologist? Do you use a meter that offers alternative site testing- you test arms, legs and fingertips. There is also a lancet out there called AccuChek multiclix that is virtually pain free- ask your doctor to write a prescription for one so ins. will pay for it. As long as your son's blood sugar is between 90-120 it is in the range of "normal", under 200 he needs a little more control. Also, check out the diabetes websites.... there are great support sites out there and camps for when your son gets older. Type 1 diabtes is not the death sentence it used to be... there is so much new information and excellent ways to treat it. Just be sure to keep appointments with the doctor and try to find a diabetes educator to help you with your questions. Check with supply companies, the local doctors, and the meter companies. They all have resources for education. Good luck!

S. -

First realize that you are not alone. Also, your son is not alone with his diagnosis. Although I was diagnosed with diabetes when I was 35, it IS emotionally destroying, with all the old thoughts out there, and the "conflicting" new things coming on the market. However, it shouldn't have been a surprise to me, since both of my parents, my grandfather, several uncles are/were diabetic, and my sister had gestational diabetes with all of her kids.

When I was in school there were a couple of kids who had diabetes. I remember one in elementary school, and then in high school one of our drum majors was diabetic. So, your son has a lot to look forward to.

Now, when I was diagnosed, I did what anyone petrified would do and looked it up on the internet. I found a wonderful forum www.dlife.com. This is for diabetics and their caregivers. There is a section there on diabetes and kids. In the "forum" section there is a specific forum for parents helping parents. If you have cable, they also have a 1/2 hour show on Sunday nights (I think 7pm) on CNN.

Another place where parents of diabetic kids interact is on the American Diabetes Association website (www.diabetes.org). This is also another site that will help you and your son as he grows older. Especially once he goes to school, what the school is required to do for him. I realize that he is only 16 months now, but kindergarten is not too far away. Also, if you put him in a day care facility, the caregivers there will need to have more information rather than just cut back his sugar intake.

Talk to your ped about a diabetic specialist. Most hospitals have them, and that person will be your guide.

I'm so sorry. My mom is a type one diabetic but she found out when she was older. Find a support group if you haven't already done so. Put him on a insulin pump as soon as the doctors say he is old enough. My mom goes to a pump class with a nurse practioner and other diabetics. I know its hard but realize his life depends on you pricking him. Remember without the insulin your son will be very sick and could die. You will know by his behavior and the finger prick results if you are giving him too much or too little insulin. As he gets older he will be able to tell you and do all this himself and the doctors will tell you to make him learn to do it himself as soon as he is able. Again I know how devasting this disease can be. I'll be praying for you. The beginning is the hardest. It will get easier for you, however, as your son grows he will deal with his own issues about what he can eat and regulating his medicine. Get your friends to financial support diabetes type I research.Hope this is of some help. Again my prayers are with you and praying for a cure. My mom has lived with this disease for 60 years.

S. - I am so sorry to hear about your son's diagnosis. I have worked for both the Juvenile Diabetes Research Foundation and the American Diabetes Association before I became a mom. I have never dealt with it personally but do understand what you are going through. Both organizations can really help you with resources, and JDRF can likely put you in contact with a local support group. The support for you and your husband will be crucial because the process of pricking and testing is emotionally and physically difficult. You will also be able to have your son interact with other kids who have the same things going on in their lives. And, you will also have he chance to see other kids who have been diagnosed who are leading near-normal lives. I know that seems impossible now but it's not. Look up your local chapter of both organizations at www.jdrf.org and www.diabetes.org. I have a close friend who was diagnosed at 16 months and is now 27. She is a beautiful, smart, active woman. You can do this. Use all the resources you can find, and don't be afraid to question your doctors - a good endocrinologist is key. Good luck!

Just follow the doctor's advice. Without a doubt, the very worst thing you can do is to NOT give him the insulin he needs when he needs it. You could ask the doctors when he would be age appropriate for getting a pump.

I completely agree. I would be so sad if my child were to be diagnosed with type 1 diabetes. But, let me tell you about a mom I know. I work in a pharmacy and see plenty of people. This mom has three children with type one diabetes. She knows EVERYTHING about the disease. She is on top of it all. She is completely organized and and has her act together. She is a warrior for her children. She stays in the forefront learning about, forging ahead, asking intelligent questions, etc. She is AWESOME. Be like that. Mourn the situation, of course. But, then, deal with in your child's very best interest. Do for your child what is best for your child.

You can do it!!!

The internet is a wonderful tool. Mamasource is too, I'm sure. The library, doctor's offices, etc.

You'll be great!

Hi S., I'm so sorry that your son has type 1 juvenile diabetes and am sorry you all have to go through this.My brother was diagnosed with type 1 when he was 2yrs old. My parents had a rough time w/it. They found support groups for parents to help cope and it helped alot.It's a hard thing to deal with,but you'll all be ok. Great that he was diagnosed early. My brother is now 17yrs old. He's doing very well and doesnt' let it stop him from doing anything.He had very good doctors since he was little.As he got older for him to understand it and everything that goes along w/type 1,my parents found him a support group w/other kids who had the same. That group helped him a great deal,he knew he wasn't alone.I can't really offer any advice that wasn't already mentioned, except there will be alot of ups & downs along the way,so when you can, find support groups so you can talk to other parents.They can give you ideas on what they're doing now for their children and what they have done. Ask your son's dr. about any groups. Best of luck to the both of you,you're very strong wonderful parents.Best of health to your son,he'll be just fine.The key is to always pay close att. to his moods as you'll learn when he's high or low.That's one of things we all learned as a family,as well as us giving him the right dose of insulin,it's scary but you'll learn. All of you take great care.

S.,
there is a wonderful organization called JDRF - Juvenile Diabetes Research Foundation and can be found on the web at www.jdrf.org

I have been affiliated with them for the past 6.5 years now helping to find a cure. My best friend's daughter was diagnosed 4.5 yrs ago with type 1 and JDRF has provided a lot of help and support. I have diabetes in my family and I understand your concern especially with a child so young.
Best wishes.
Sincerely,
T.

Hi S.: I am sorry to hear about your son's diagnosis. As a mother with a child with type 1 diabetes I can definitely understand. My son was diagnosed at age 10 and is now 18.

The important thing for you and your husband, S. is to educate yourself and join support groups online and offline, if possible to be around other people with type 1 children.

A few websites:

1. www.childrenwithdiabetes.com - Great place to start.

2. www.jdrf.org and www.diabetes.org - Get educated from these sites. The American Diabetes Association has an expo every year (Atlanta's was in March). Go there..very educational.

3. www.dlife.com - Online and if you have cable, it comes on Sundays at 7:00 p.m.

4. www.campkudzu.org - When your little one is old enough, send him to camp. It was virtually a LIFESAVER for my son, who is now a Counselor in Training and is going to college to be Dietitian and Certified Diabetes Educator.

5. Have you and your health team considered the insulin pump? That might make things easier as far as keeping up with his highs and lows. Check out this websites:

http://www.childrenwithdiabetes.com/pumps/

http://www.diabetesnet.com/diabetes_technology/insulin_pu...

Giving my son his insulin was hard, but as one of the nurses at the hospital told me when my son was diagnosed, "you will get through this", yeah right, as I was trying to find ways to kidnap her and take her home with me. But she was right...we are getting through this.

Hope this helps and your family is in my prayers.

Herschellene - Not a doctor or health care provider, just a mom with a type 1 son :-)

Hey there. I am very sorry about your son's diagnosis. It will be a difficult adjustment for all of you. I was diagnosed when I was little and I honestly think my parents were more upset than I was. I want to let you know a few things: 1) It will get better. 2) When I saw my Mom get sad or upset about it, that's when I did, too. She and my Dad learned to do a great job of putting on a "happy face" with me while they were chasing me around the house to give me shots and prick my finger. I'm sure they fell apart behind the scenes. 3) He can have an absolutely normal, fulfilling life if you help him learn to live that way. Mama and Daddy never treated me like I was fragile or incapable, so I never thought I was.... I played soccer, went on youth group mission trips to Mexico, excelled in school, backpacked around Europe...basically, I played and worked just as hard as my friends around me did. And on top of it, my diabetes had a great subject for show-and-tell and those awful science projects. My parents made sure that all of the adults around me knew how to handle emergencies and let me know that I was responsible for tending to my diabetes. Going on 20 years later, (I'm 30 now) I'm still playing and working as hard as anyone around me. I'm married, we're about to start a family.....and while having diabetes has by no means been fun, it has made me stronger, more sure of myself, more independant and at the same time, more understanding of others. And very thankful and appreciative of my parents and all of the work and worry they went through to help me stay healthy.

Please let me know if you have any questions! (I'm on an insulin pump, by the way. That may come up down the road. I love mine.)

My daughter has the genes that MAY lead to the development of T1DM (type 1 diabetes), but she hasn't developed it yet. We found out by participating in a study with the Medical College of Georgia - TEDDY. There is another program associated with TEDDY called PANDA, and they may be able to help you with any questions. Their number is ###-###-####. Please keep the faith that God doesn't give you more than you can handle!

I am sorry to hear this. When I found out that my son was allergic to just about everything under the sun, I was like you said, "emotionally destroyed" at first too. Then I did some reasearch , and as time has gone by, it has gotten better. Don't get me wrong, I still worry about my little boy, especially when he is away from me, every second of the day. But I'm not devastated about it anymore.

Give yourself some time. You just learned about this. As time goes on, you will feel a little better about it. You, your husband, and your son will all learn how to live with this disease, and you'll also become more confident living with it. I wish your son and your family the best. Just give it some time to sink in, do your research, and things will get a little better.

S.,
It is with great joy that I can respond to your request. There is hope! There are studies of using pancreas of a pig to get the insulin and it is working!! I have a friend who is 46 and she has one. Also, my sister was diagnosed with TypeI when she was 5. She is now 43 and believe it or not has not had any permanent damage. The sticking the baby comes from a mother's love of not wanting to hurt the child. You have to get over your fear of hurting him in order to help him. I know somewhat of what you are going through. My daughter is hypoglycemic which is a form of diabetis. She didn't like it when she was pricked but on more than one occassion that has helped to keep her from going into shock. It is what you have to do in order to help your child survive! I have faith in you! I will be praying for you, your son, and your family.

S.,
This is B. (deaffmommie) on the list. I am soooo sorry for this news, but Diabetes IS treatable and your son can live a full life with this disease.

I know you are in shock right now and you need to "grieve" for the lost dream of a "perfectly healthy" child.

I have Type 2 diabetes and I was so scared the first time I had to prick my finger.

I was even MORE scared when the doctoe adding insulin injections to my daily routine.

I can only offer support in saying YOU CAN DO THIS! Your son's life depends on it.

If this happened to my child, I would be the strong one and do the sticks quickly. Have your hubby hold him and take his little hand behind him so he doesn't see what you are doing... since he is a baby still. Then as he gets older explain that checking his sugar levels will help keep him healthy.

Also limit sugars in his diet... ASPARTAME is in everything diet on the market. it is Equal by brand name. I am allergic to this ingredient and so are many people I know. READ labels and try to stick will Sweet and Low or Splenda.

Limiting sweets and starchy foods is a must.

Instead of a whole candy bar he could have one of the mini candy bars like children get at Halloween...

Veggies and fruits are healthy choices for him.

If you have not been shown, the baby's thigh on the outside has more fatty tissue and that is where I do my injections.

I am in Georgia and you can email me off list. at bar345ing AT yahoo DOT com.

I will be happy to lend an ear.

Hugs,
B.
deaffmommie

Find a support system/group for really young kids with diabetes.Learn all you can make everyone in the house eat the diabetic diet(it's better for you anyway) that way it's not obvious he has to eat different.As He gets older 6-10 start teaching him how to test himself and manage his diet with guidance.He's always going to have these issues so empower him to handle it.My mother did this with my Epilepsy/seizures.I'm thankful I learned to handle it myself so as I became an adult I wasn't trying to learn my own disability.

Hi S.,
Though I do not kno your pain with a baby with diabetes,I am a diabetic my self,I was diagnose later in age,I have been around children who have this also.The one thing that I learned from them is that they hate to see their parents looking afraid to stick them or give them insulin,they want to just be happy and have their parents not worry,one little boy told me that it could be worst,he could have had cancer or something,but he has diabetes and even though it may not be fun,it beats getting chemo like some of his friends have to do.Is there a way for your childs doctor to give you the doses that is already measured out for him? Ask your doctor just how many times is really necessary for him to be prick and akso,S.,you and your husband,join a group with parents dealing with this same issue,believe me,you are not alone,I will write you again to see how you are all doing.

S. I cannot imagine how hard this is for you . My husband is 39 years old and was diagnosed very young He now wears a pump with huge success and now a way of life. I have 2 small boys and am watching them for signs . Dosing is according to the results and checking sugar levels will get easier . I am an RN also and have seen moms go from stress to relief as they get used to the system . YOu will learn quickly how to deal with it as you love hime and therefore we can do what we need to do !It will be okay and will get better . Are you dosing as needed or set amounts during the day ?You should have an RN helping also . Let me now what assistance you have from the MD etc/
J.

S.,
Don't despair! I know it is very sad to find out your child has a disease, but this is fortunately one that health care professionals know a lot about, and that is very treatable. Everything is new and raw and overwhelming now, but it will slowly get better. He has 10 little fingers and 10 little toes... that's a lot of places you can prick before you have to do the same place again. Take advantage of the diabetic nurse educator and any other assistance that is offered. When you go see the doctor/nurse educator, go armed with a written list of questions/concerns, and a tape recorder. It can be very difficult to soak everything in when there is so much information at the same time as your world is going topsy turvy, so it's good to have a back-up method of listening to what your health care provider has to say. There are also a lot of support groups for parents of Type 1 diabetics. Hang in there... you can do this!

Hello...I'm so sorry to hear about your son's diagnosis. It's just lucky that you figured it out so early! I am a type 1 diabetic with my own little type one two year old. I can tell you that it just takes time and a little experience and before you know it, it will just be a natural thing in both of your lives. I was diagnosed early on in life, and yeah...sometimes it has made my life a little bit harder...but it's never made it an unhappy one. If anything I am very thankful that there is a way for me to be happy and live as normal a life as I can. My daughter now holds out her finger for testings...she knows it as just a part of her life and luckily she is so young she will never know of any differences. If you are worried about the doses, ask a million questions and don't stop until you are satisfied with the answers. Even though I have over 20 years of experience with it, there are things that I still learn everyday. And that is something that you and your child will go through.
So what if he has diabetes...can you imagine what worse is out there? How many other things that are there that can't be treated? At least with Diabetes you can literally be in control of the disease. I'm so glad you found it early on!

You sound like a concerned parent, a loving one. Just keep doing that and the diagnosis will just become part of your lives that after time, you won't even notice.

Good luck!

I have friends at church that have a son with JD and they are wonderfull people who have taught their son to handle it so well. Since he was diagnosed at 5 (I think) he himself has learned how to test and give himself his own shots. They are a remakable family and if you send your e-mail, I can see if one of them will respond back. I am at ____@____.com

Hello S.,

I kind sort of relate to you on this subject because my Mother before she passed from another illness had Type 2 and was insulin dependent. She was also scared to have to inject herself with the needle twice a day so I had to be strong enough for her in order to give the injections. So although you seem scared and uneasy this is something that you will have to face everyday. Trust me you will find the strength and have faith that your son will grow up to be a healthy young man.