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Any Preemies with Diabetes?

Hello everyone, I haven't been on here for quite a while, too many internet/ computer problems have kept me off here and things just got a bit overwhelming. My name is Deborah and my daughter, Eleanor~Rose was born on 11-10-99 at 27 weeks, but because she suffered from IUGR, she was the size of a 23 weeker, and on the small size, she weighed 405 grams(14.3 oz)and was 9 3/4 inches long. She was suspected of having NEC at 2 days and was transferred to Children's Hospital Los Angeles and was treated without needing any surgeries. She spent 108 days in 2 NICUS, came home on Feb. 26, 2000, 3 weeks after her EDD weighing 4 1/2 pounds and 15 1/4 inches long. She had BPD, CLD, needed nebulizer treatments cause a cold would go straight to her lungs, her heart murmur was closed off in 2003 by her long time cardiologist via a catheter based procedure. She was always slow to gain weight and grow, was labeled as "failure to thrive" then one day she started eating more and gaining weight. Problem was since she was short for her age she did get to be a bit chunky, then had a fatty liver. The past couple of years, she has lost q good amount of weight, nothing dramatic(not to my knowledge) but at our new doctor's check up in early December is that she was diagnosed with diabetes. She was very shaken up over this. Now type 2 diabetes runs on both sides of her family. My father has it, his mother had it, a few of his sisters and brothers have or had it(some are deceased)many of my cousins have it and are being diagnosed with it, one of my younger brothers has it and now I do. My mother had it but her's was brought on by stress, there was only 1 case in her family, her uncle(her dad's brother)cause he ate lots of sweets as a child and young adult) Also my daughter's father had diabetes when he was older(he is now deceased to stomach cancer)and her three aunts have it. I never felt so guilty in my life except when she was born premature. So although at first she was being treated as a type 1 diabetic, they took blood test to determine what type diabetes she had, because of the strong hereditary for type 2 on both my side and her dad's it was possible that she could have that. Now as all kids, my child hates needles and freaked when she heard that she was diabetic, she dreaded the poking the finger for blood and the insulin, but as time has gone by she's dealing with it a bit better these days. I had to call in her blood glucose numbers and insulin dosages daily to her nurse, she then told me that from what she saw on her blood test results that Eleanor~Rose looked as if she had type 2 diabetes and if that was true, she may eventually start on pills and more than likely be weaned off of the insulin and she should be able to reverse it with her new way of eating healthier, monitoring her carb count and exercise. But when we went to CHLA on Monday her doctor told me that in the test they look out for 3 antigens that attack the pancreas and see how high they are, two of them were very low and the third one was over 10, so he said that although she shows some symptoms of type 2 diabetes, she is a type 1 diabetic, meaning that she will be insulin dependent for the rest of her life. I think that Eleanor~Rose was being brave when she heard the news, she asked the doctor again what type was she, cause her PE teacher wanted to know, and he said that as far as he was concerned by what he saw on the test, she is a type 1 diabetic. We then met with a fantastic team who alleviated her fears and as well as mine's about high numbers and adjusting insulin if she ever wants to eat some high carb junk foods once in a while. I think after trying to be brave and dealing with this through out Christmas when we normally eat home made cookies that I make, and having junk food although my brother is an ex chef and he makes us delicious well balanced meals, she finally cracked last night about her new diagnosis. I guess the realization of having to inject yourself with insulin on an everyday basis besides checking your blood sugars between 6-8 times a day got to her. I know that she's scared and I am trying my best to be strong for her, I thought that after the NICU roller coaster we'd be done, but I see now that God has other plans. She is also being checked for something called Turner's Syndrome, at 13 years old she is only about 4 feet 5 inches, I've done some research on Turner Syndrome and although I do not think that she has the physical attributes with the exception of short stature, some other descriptions sound like her, but I am trying not to dwell on it. I am just reading up on it just in case to be better informed and be able to ask questions. I do not know where this path is leading to, but I have faith and believe that God will always be with my daughter and me and that whatever happens it will work out and be all for his glory, this is his promise that gets me through the trials that I have been facing. I was just wondering if any other parents premature baby or child has been diagnosed with diabetes. If not I just needed to get this off my chest. Thank you all and hope that you all have a wonderful day. Take care and God bless. P.S. I am also dealing with trying to get her the 504 plan at her school, and it's getting frustrating, the social worker at CHLA recommended requesting and IEP, she was in RSP from Kindergarten til 5th grade, tested well at her tri annual IEP in the 6th grade and was put into mainstream, and although she can do the work it takes her longer to complete but has troubles during test, so I am trying my best to get her more help, but everything is taking forever, now I need to get her diabetes diagnosis on the 504 plan or even the IEP, and the other kicker is that her school hasn't even notified her teachers about her condition, I had to email them and let them know. It's crazy.
Mommy2Eleanor~Rose

23 Replies

  • Mommy2Eleanor~Rose
    I hope that everyone had a wonderful Valentine's Day, mine's was nice just quiet. My dad got me a box of See's candies, I know that's going to be a challenge for me to spread them out. LOL!

    He also got my daughter a small box of some of her favorite candies, but when we got home my oldest brother who lives with us, looked at the box of candy, rolled his eyes, and shook his head as he asked her "you got candy?" Ugh, now my brother reads up on world events, his Bible and knows everything that is going on in the world, can you please tell me why he doesn't know the difference between a type 1 and type 2 diabetic? I tired to explain but it's like he doesn't want to know, he's so used to seeing our parents and knowing other with type 2 that I guess he thinks that everyone is the same.

    Personally I think my dad made the mistake getting me the 1 pound box and my daughter just the half pound. She has a much stronger will power than I do, I'm only on Metformin and I know just how easy it is to fall into the traps and pit falls of cheating here and there if your numbers are okay, I've seen my father do this for many years since he's been diagnosed and I'm really struggling with this.

    My daughter can get a bit "testy" with me at times, like the other night she pouted for two sandwiches late at night, but all in all she has been doing good with her eating habits, carb checking and her BG checks and insulin. So she should be entitled to a couple of candies or cookies every once in a while and not have her uncle thinking that she can't eat the candy anymore. Now my dad had given my daughter some Ferrero Rocher candies at Christmas, but she gave those to her big sister because he had also given us chocolate cookies from Costco and so she didn't want all the sugar.

    Sorry for the rant, but it's so frustrating that I am doing all I can to encourage my daughter, support her and be there for her only to have her own uncle question some of the foods that she eats. Between him and my dad who at times forgets and offers her food with carbs on the spot with no blood check or insulin drives me a little batty. I know that things will get better, but man I so wish that I had my whole family on track with me about this, it would make it a bit more bearable.
  • esgf
    It sounds like Eleanor Rose is quite the fighter but sometimes it can just be too many things at once and we all need a good cry sometimes. I wish you luck with the testing. We went through alot of testing with my daughter b/c she was failure to thrive, short and her feet and hands never grew (still don't). Finally they said enjoy the savings on the shoes. However, it bothers my daughter since she is in the second grade and can't get the "cool shoes".

    She sounds so responsible with her diabetes. I can't imagine how heartbreaking it is to have all of this happen at once. We think once their out of the NICU, their lives will bea easier but sometimes it is only the beginning. Good luck and please keep us updated.

    Take care,
    Ellen
  • Mommy2Eleanor~Rose
    Hello Jackie and Jami, thank you so much for your stories, it's been a pretty eye opening experience for us.

    Eleanor~Rose is doing as good as she can, she still pretty closed mouth about talking about it with people, and she grumped at me when I mentioned a chat board for kids with type 1 diabetes, so I just have to let her be and she'll decide what she wants to do as time goes by.

    I know that she's going to have good days, bad days and in between times, and her moods and BG levels will go up and down as she gets older and goes through changes. I noticed that she gets bad cramps now when she get her period as opposed to when she started it last year, but we're still learning.

    I feel for you Jackie and friends taking away your food. They should read about it before they try to do something like that. I would never do that to my daughter. When she started taking lunch to school and she had told her close friends, one day she had some ranch dressing with her lunch and her friend asked why did she have that cause it has fat in it.

    My daughter said that we measured it and as long as she eats the serving size indicated on the jar, it's fine to have once in a while. LOL! I told her that if she were to have a whole cup of dressing at every meal, then there would be a problem, but 2 TBSPs once in a while will not bother her.

    The other night at my dad's, her aunt and uncle bought pizza, and so we just checked out Calorie King and got the carb count, she only wanted 1 slice and she was happy. Thank you, I will keep you in mind because I want to get as much helpful info as I can, but also know that everyone's blood glucose's are different.

    Jami, my heart goes out to you for your daughter. I have a friend who has PCOS, so I have heard of it but I have never heard of a young girl having it. She's had it for over 10 years and been on Metformin as a pre diabetic, she found out while she and her husband were trying for their third child, but it never happened although she is very thankful to be blessed with a son and daughter.

    I don't know if her having diabetes is caused by her being born premature, my daughter doesn't have asthma per se, it's asthmatic bronchitis, it's that if someone is sick and they are around her, she can get sick and it affects her breathing and she used to have nebulizer treatments, the weird thing was, after the treatments she'd be wiped out and sleepy while I have heard the doctors and nurses tell me that the treatments usually make the kids hyper, so she was already different there.

    As I said I do not know if she would have Turner's Syndrome, one of the problems the girls has, is that her reproductive system will not develop, they will not grow breasts, or have a period and are infertile unless they get treatment, but my daughter is growing, in fact she has had *** since she was a baby even when she didn't have any fat or meat on her bones. Her pediatrician would crack up over that. And she does get her monthly period regularly, so I don't know if she could still have Turner's Syndrome despite this.

    All I know is that she is 4 feet 5 inches at 13 years old, and wears a size 2 1/2 shoe in the kids size, her foot rarely grows so I do save money on shoes. LOL! But we will not know anything until we go back in April, so I will keep you informed, and if I need to know anything else, I will mot hesitate to ask. As I said I think that she would do well with a pump, but I know that she has to decide what she feels is best for her and I understand her feelings of being embarrassed if they were to see the pump on her and worrying if they'd make fun of her, but I also know that her school has a zero tolerance for bullies and she's good friends with the security lady who has known the principal for years and will catch those kids in the act so they will deal with the consequences, she told me once when she caught a boy bullying another boy, he ended up getting suspended by the principal, so I know that she'd be okay, but I'll let her do what she wants, as long as she is checking her BG and giving herself her insulin, she knows that if she doesn't do it, the BG monitor and her A1C test will tell on her. LOL! I'm just so thankful that she is a good kid and is doing it and even eating healthier foods, plus she doesn't sneak(for now)so I just tell her how awesome she is and what a great job she's doing and just how proud I am of her and how she's much stronger in her will power than I am, and she just smiles and hugs me.

    Thank you all so much for all your, advice, stories and help, I truly appreciate it. Have a great evening and wonderful week.
  • Jami H
    Hi Deborah,

    I have a 29 weeker who is now 11 almost 12. She has been diagnosed with PCOS (Poly Cystic Ovarian Syndrome) Insulin Resistance, and they are still trying to determine if she is actually truly diabetic or not. Her A1C's are elevated and her insulin levels are low. She see's an endocrinologist and has blood work done every 3 months. The first time we saw her new Endo she did discuss with me the amount of steroids Lexi was on when she was younger for her Asthma and the role that could have played in some of her current health problems. Not sure if any of that could have a role in the issues with her blood sugars but I can't help but wonder how much her prematurity as a whole has had on her health. As of right now Lexi's issues seem to be type 2 if they are even diabetes at all which they probably are. She is on Metformin XR 1500mg.
    Like Stacy said I think a pump sounds like a great option for Eleanor-Rose, and you are right. We think we're out of the woods when we leave the NICU and then our poor babies have to keep fighting. I sure hope that you and your sweet girl get answers. In the meantime it sounds like your doing an amazing job handling all the curve balls thrown your way.

    Praying for you guys
    Jami
  • Jackie G
    Hi Deborah,
    I don't have a child with diabetes, but I myself have it. They questioned what type I had too because I was not diagnosed until I was an adult. Although I didn't fit the bill for Type 2, that was immediately what they thought it was because of my age. However they did a C-peptide test which determined that I was not making insulin (type 1) and while my insulin resistance was probably a little high it was not the contributing factor to my diabetes. So I was diagnosed as Type 1 and given insulin.

    It sucks, no doubt about it. I wake up in the morning, *** my finger, and take my Lantus insulin. I eat breakfast and take Novolog insulin with my meal. I workout, *** my finger, eat lunch, and take another shot of Novolog with my meal. Then dinner requires another *** and another shot. I wake up in the middle of the night and have to go get snacks if I've miscalculated my insulin. It sucks, truly, sucks.

    It took me a long time to get comfortable with giving myself shots. But honestly, when you are diabetic, you have no choice. (Unless you want to go to a pump, which it looks like you are holding off on).

    While diabetes is nothing to be ashamed of, I do understand her fear of letting other people know. I have had people comment on what I'm eating and take food away from me. It makes me so angry. I have learned how to adjust my insulin so I can eat that stuff from time to time - So it just makes you feel worse. I've learned to tell people "thanks for your concern, but I know how to take care of myself".

    I was diabetic through my pregnancies with no issues. The only time I had a problem was this past year when I was trying to lose weight. I was having so many lows I stopped checking my sugars and taking as much insulin. In October I had the stomach flu and got so dehydrated it sent me into DKA. I spent 2 days at the hospital because of it and it has scared me back into control. I have started testing frequently again and taking insulin with all my meals again. I felt horrible and ashamed. :frown: But I'm human and I just got tired of having to work so hard at it. So when I had lots of lows I used it as an excuse to get sloppy. Unfortunately, diabetes is not forgiving. Please let Eleanor~Rose know that she's not alone and her feelings are normal. It's all about making the "new normal" just that.... normal.

    If you have any questions, I'm happy to answer them.

    Hugs,
    Jackie
  • liz loschinskey
    Hi Deborah,

    I'm sorry you and your little girl are going through this. I do not have any advice as I have not been through anything you mentioned.

    Know I am here to listen and pray for you and Eleanor~Rose!

    Love and light,
    Liz
  • Mommy2Eleanor~Rose
    Hi Stacy,

    Thank you so much, right now she is using an insulin pen, it looks like a actual pen, and you twist on the needle, remove the cap, and twist the bottom of the pen for the unit dosage that she needs. She is on Humalog for when she eats meals with carbs as it is a fast acting insulin, then in the evening she takes another insulin called Lantus as it works for a 24 hour period to help keep the blood sugar at a stable level while they are sleeping.

    In the basics class we attended, the woman who was teaching has type 1 diabetes so she relates with the kids very well. She has the insulin pump,but she has told us that when she was first diagnosed when she was like 12 or 13, she had to do the syringes. They still want us to learn how to use a syringe as you never know what can happen with a pump or even an insulin pen, it's always good to know how to use the basics.

    I have asked Eleanor~Rose if she'd like to eventually switch over to the pump, but she said no because in Jr. high she has to dress for PE and she doesn't want the other girls to see the pump on her, she's very private about her diabetes, she's only told three of her close friends, and the fact that she is the only in her school that has diabetes, she's struggling and so I will let her do the pens for now and hope that later on down the line she will decide to get a pump, but for now the thought of it just makes her feel as if everyone will point her out.

    Prayers for your friend's son, hope that he is doing well.
  • stacyat
    Oh gosh, I'm so sorry for your sweet girls' diagnosis! I'm sure your heart is breaking having to see her go through all of this on a daily basis. I know of one friend that had her little boy diagnosed with diabetes last year, he was born at 27-28 weeks or so and he's got an insulin pump now. Would that maybe be an option for Eleanor-Rose? I don't remember if it tests the blood sugar automatically but I know it administers the insulin without the extra needle sticks. Maybe that's something to bring up to your doctor? Tons of hugs!
    Stacy
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