Our daughter was diagnosed Type 2 Diabetic leading to Type 1 on Feb 6th of this year. I myself am a Type 2 also, genetically effected as I am 5th generation. Our daughters issues however came about in a totally different way. Last March she was a normal 6yr old then started gaining weight rapidly, in April 08 they ran a battery of blood tests and couldn’t find a cause so they said she was just going through a growth spurt. Long story short, by August she had gained 56 lbs and was sitting at 111 lbs. (During this time frame I’d taken her to 3 different doctors and all refused to retest her because of the normal results in April). August 30th I finally got another doctor to agree to test her and we found out her Thyroid had stopped functioning (Hypothyroidism). She was put on medication she’ll take the rest of her life for this and things looked like they were getting better. She lost about 10 lbs in the next few weeks, then in October she was showing signs of diabetes according to blood tests so they called her pre-diabetic and said we could control with diet and exercise, so thats what we started doing but she kept gaining weight no matter what she ate. We moved in December and had to find a new Ped Endo for her Thyroid condition and met with her on Feb 6th where she was diagnosed Type 2 leading to Type 1 (which they also call Double Diabetes) . Her diet was changed drastically and she was put on Metformin. Things started going well again, she was losing weight her BG levels looked great, then we found out that blood tests revealed other issues going on. On Feb 23rd she was hospitalized and we found out after another series of tests she now has Addison’s Disease on top of everything else. The issue is, her autoimmune system is failing and causing antibodies to attack various organs as if they were infections or virus’ even though they aren’t. Because it has affected more than 1 of her organs they call this the cluster effect. So now, in just 6 months time from being diagnosed with Hypothyroid she takes 6 prescriptions (11 pills a day) to control all of these conditions which have no cures. In the meantime I can’t keep my own diabetes under control due to the stress of all of this going on with our daughter which makes it harder to be there for her when I’m not doing so great myself.
Our daughter cries a lot because of all the rules for all these different issues and wants to know why it’s happening to her…they have no answer or cause for her autoimmune failure which is frustrating for me as well. I can’t explain it to her because I don’t have the answers because the doctor’s don’t have the answers. She is sick of all the testing constantly which I explain needs to be done but at 7 she doesn’t understand it all. She’s been a trooper and does what she needs to do for each condition but she just wants to be a normal kid and mommy can’t make that happen. I know this is all necessary but it is truly too much for a 7yr old to handle.
Hang in there, Mama…I wish I had some words of wisdom for you, but I just don’t know what to say, other than it sounds like you are doing a FABULOUS job advocating for your daughter and finding as much help for her as you can. It’s hard, but just keep doing what you are doing and take it one day at a time - you can do it, and your daughter can, too.
You’re right - no child should have to bear this - but think how strong a woman she is going to be for coming out the other side of these issues and learning to live and thrive with them. We are all here to support both of you…
Robin, It sounds like you have a very full dance card. I don’t understand the other diseases, gosh, it’s enough just to have diabetes! I’m sure your love for your daughter will help her to be strong. I’m glad you’re here, and I hope you are getting some answers soon. Sending you some big hugs. Keep in touch.
Welcome home . There are 7000 of us and we are all here for you. Please cry and do all the things you need to do. I can’t begin to imagine what all you are going through, but we all love you and have our arms wrapped around you Please use everything we have got to offer and let us help in every way we can. I don’t know what to do except be here for you right now. Would your daughter like some cards sent to her? We could do that from all over the world. She would be the only kid in her class to have friends from all over. Maybe that could cheer her up a little bit. If she has to have something so astronomical, maybe having such a huge family might be able to help her feel special in this way. I don’t know how else to help right now Robin but whatever you can think of we will do our best. Prayers and loving hugs to you both and all the family.
Laura’s biggest complaint now is her weight, she gets teased at school because she is “fat” or “chubby”. This is a tough one, her thyroid condition started the weight gain, then the diabetes added to it, the addison’s and a low carb diet started making her lose weight but she is still sitting right at 100lbs. I know kids will be kids and they act upon what they see and could care less why she is bigger then other kids her age they just know its something they can tease her about. I haven’t a clue how to tell her to handle this and so all I can do is hug her and tell her I love her and it will get better. We have only lived in this state since December so it’s a new school and new classmates and such for her which doesn’t help any. At her old school it wasn’t an issue, or at least nobody ever said anything to her face about being heavier.
I appreciate the offer of the cards, however, we are also having issues with her 10yr old brother. He’s angry and jealous that his sister is getting so much attention, even though it is medical, to him we love her more than we love him. It isn’t true and we’ve tried time and time again to explain to him that its not special attention its medical but it doesn’t make him feel any better about it. If you were to send her cards that wouldn’t help him any either because then EVERYONE is treating her special and leaving him out. But thank you for the thought just the same.
We will get through this, its just so much in such a short amount of time it’s overwhelming to us all right now.
My heart goes out to you and your daughter. This is such a difficult situation.
Autoimmune diseases often come in groups, and we understand far too little about what causes them.
Has your daughter started on insulin?
Also, I am currently reading this book that explains the autoimmune epidemic and tells people’s stories who had trouble finding the right diagnoses and treatments. Also, it has tips for lifestyle and diet that may help. To order the book, click here.
Please keep us posted on how you are both doing! We’re here for you!!!
I will give you my standard advice when a kid have diabetic issues. I was a young diabetic and it caused significant issues for several years. What I suggest is that you seek counseling for both children. For your daughter she has to deal more effectively with her disease. A good third party therapist can help that. She is not to young, when kids get these diseases they have to deal with them, even if we think they are to young. We do not choose these things, these things choose us and age does not matter.
For your son, therapy is perhaps even more important. He also did not choose this and as such he is old enough to seek and get some help.
Trust me, I know this sounds a little clinical and very grown up. But, as a kid who made it through if my parents had sought therapy, I would have been so much better off.
i myself am type 1 diabetic was diagnosed at 11 . i cant imagine what it is like to be 7 & get diagnosed but trust me she will pull through & my mom used to tell me that ALL the time! the only thing you can do is be by her side and trust me she will get through it ! & let her know that god doesnt give you something you cant handle & she is a very strong litle girl & to keep her head above water!
Hi, my niece has Type 1 and Hashimotos (hypothyroid, autoimmune). In light of her other autoimmune diagnosis, I am concerned about your daughter’s diagnosis of “Type 2 leading to Type 1.” Could she have Type 1.5 or LADA, which can occur in children and is late onset Type 1? I would get a second opinion from a pediatric endocrinologist as to which type of diabetes she has. You can get a lot of support from children with diabetes online website. I find the forums, where you can ask questions, particularly helpful. There are other Moms who have experienced the bullying, problems with the schools, and they may be able to help you as well. My heart goes out to her, she truly has too much on her plate, particularly with the Addison’s. I am just concerned about the diabetes diagnosis as children are often misdiagnosed and it is very important to be sure which type of diabetes she has.
Hi Robin, I just wanted to see if the doctors have checked your daughters vitamin D levels. There is a lot of research that suggests that vitamin D deficiencies are connected to autoimmune disease and some initial research to suggest that lack of vitamin D can prevent weight loss. I just read this article and thought of you and your daughter. It would be good to ask the doctor to check this.
I will try to put a few words here to help. At 8 years old I almost died froma complete reanl failure (my kidneys quite–kinda grew shut but that is besides the point). My mother says I was always a sickly child…anyway. When I was in the hospital I had to have a lot of tests, dialysis (very painful in those days) and 2 surgeries. Life was never the same it was all about rules. I had to drink coffee or tea (back then was used as a diaretic–didn’t have all the drugs they have now).I was on all kinds of meds–antibiotics that kept me out of the sund for 6 months after my surgeries. And then the eating rules…and the drinking rules…other kids got juice and koolaid–I got water. Nothing spicy, no meat…The cortezones i had to take packed the weight on like crazy. I couldn’t go play with the other kids–no contact sports or even rough housing as a blow to my kidneys would be lethal–and the testing–IVP after IVP and bloodwork after bloodwork…I was terrified I would run out of blood. All the children I was in the hospital with (about 8) died from complications (the surgery we had was expeirmental–they do transplants now—and it was a specialized hospital–so had all the pediatric Kidney patients for the west coast)…it was a lot,but I did come out a very strong woman.
Fast forward almost 42 years…I becamea First Class Scout, backpacked the Sierras, learned to shoot, horseback ride (no “contact” sports–including teatherball) got married,had kids (yep-two healthy ones with no complications–was a lot of work–but they were worth it)
As long as you are honest about what is going on (my surgeon told me I might die–my mother was horrified–but he knoew the importatnce of that honesty…it made our relationship very easy afterwards and I was always truthful with him–even when I cheated, and could ask/tell him things I couldn’t my parents–especially when I became a teenager) you will all get through this.
We all have days that overwhelm, and this is a wonderfull place to come for support or to vent, both or to lift others. Wherever you are and whichever you need, we are here for you.
My heart goes out to you and your daughter and your family for this challange you have been given. It sounds as though you are doing a great job.
I agree with Rick. I was diagnosed w/T1 at 10 and like your daughter, I began to have multiple conditions: hypothyroidsm and autoimmune hepatitis. I wish my family had gone to theraphy, but therapy for these type of issues were not common in the late 60’s early 70’s. I know that my siblings suffered because the attention was directed at me even though is was not particularly positive. My parents (who were divorced) did not understand the issues either. I know that how you respond to what is happening to her, affects how she will be able to deal with this. However, you also need assistance and her siblings need help too. My older sister still feels that she needs to be around to take care of me…I am 50 yrs old! I can’t imagine the responsibility that was placed on her shoulder…whether is was actual or perceived, it was real to her. We have talked about all of this now that we are adults, but when one is a kid, one cannot process nor understand why one is reacting that way. There is so much grieving going on.
My best to you and your family.
Oh my gosh! how sad. I am so sorry for your family especially your daughter. It is too much for a 7 year old, but kids are so resiliant. They are capable beyond our wildest expectations. I can’t imagine what you all are going through. You will make it; one day at a time. I have a 6 year old girl; diagnosed at age 3. Maybe your daughter would like to write a note to my girl by respone to this email. Maybe she would comforted by hearing from another girl close in age. I will help my girl write her back.
hang in there…things will get better. i felt like that when i was diagnosed with type 1 D at the age of 9. all i wanted to do was be a kid but my parents were over protective and in a way it kind of stole my childhood. i think if my parents would have let me have a little more slack, id have felt more like a kid. they were just so up tight about everything i did and didnt do. id look at my older brother and say "he was allowed to do this and that at my age. why cant i?"
now, ive found my own little ways of being a kid that they actually let me do, like going to D camp and playing vball. plus, in the end, D made me so much stronger and everything your little girl is going through will make her alot stronger too.
just remember, this is not forever.
I was 15 when I was diagnosed with type 1, and my brother was 13 years at the time. He had a very hard time adjusting to it and being a teenager rebeled against anything my parents said to him with a whole lot of anger. It went on for a few years, some of it was normal teenage issues, but, even to this day, I have a problem with other auto immune diseases, and after threapy for him, a lot of it was the “attention” I was getting. He is a lot better now. I don’t live at home with my parents, he still does, so that helped us a lot. But I am almost 24 and he will be 22 next month…so we are older. But he also didn’t start going to see someone till he was 17 (maybe 16 im not sure). It helped him a lot. I would start now with your son. And with your daughter too. I did a few therapy sessions myself. Anyone dealing with a chronic illness will usually have to at some point in their life.
Hi. I am sorry you are going through all of this. That is a lot for a 7 year olds plate, much less her mom. My daughter was recently diagnosed with Juvenile Diabetes. She is 7. I am a Juvenile Diabetic, as well. My blood sugars have been completely off the wall due the stress I was feeling initially. It is better…but, I still have my moments.
Would you like our daughters to talk to each other? I will give you my phone number and we can set up a time for them to talk.
I went through a lot of anger, at first. Thinking…why my daughter. But, I realize, that God knew I could handle it. And, I do have a very good support system with my family and the summer camp which she goes through. I am a single mom, so I get very nervous sometimes. I do not sleep because I am afraid she will drop in the middle of the night.
You are very refreshing to read about. A very strong woman and a great role model for your kids.