MARCH OF DIMES | MARCH FOR BABIES | NACERSANO

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

    Hello Everyone,

    �

    I just wanted to let you know that I started a blog page for my daughter, it's called Eleanor~Rose Blossoms. I also reposted my story of when she was first born, my story was in the Share archives as I posted it back in 2004 I believe. Hope that you enjoy it.

  • Mommy2Eleanor~Rose

       Today was my baby's first day of school, she is now in the 8th grade, it's hard to believe that this time next year she will be in high school, I don't know where the time has gone. Of course she wore her favorite color and even curled her own hair with her spiral curlers,, I thought that the white leggings were a bit much with this hot weather, but she wouldn't budge, she did however opt for her black flats instead of her pink suede fringe boots. LOL! She also took the pic in front of her sunflowers that she grew this past summer, unfortunately out of the 15 or so she had "germinated" and planted, only 3 have grown, guess the birds got to the other seeds, and one is much bigger than the others, but she loves them and wants to grow more, hopefully we'll do better next time. Hope that you enjoy the pics, I will be working on transitioning to the Blog page, I started on on Blogger but that was for friends that I have on Face Book who are not on Share, but if you'd like I can put a link, it;s still in the beginning stage and I'll add more posts as I go along, but it's great. Thank you for the advice and encouragement I truly appreciate it and I just want to help educate anyone who is interested in both premature babies and type 1 diabetes. The past few weeks while on vacation and when we got back her numbers were high, not sure if she's exiting the honeymoon, but her insulin ratios needed to be changed. Thankfully her numbers have gone back in range before school started, now I am hoping that with this heat she won't drop. If it sin't one thing it's another. LOL! Hope that you are all having a great day.

    �

  • Mommy2Eleanor~Rose

    In reply to Jami H:

    Hi Jami,

    Thank you for the sweet post. I never thought bout a Blog on here. I did write her story of when she was born years ago when I first joined Share and it's still there. My daughter did get the extensions put in, and we'll be taking them out next week before she starts school. Usually during the school year on the weekends, when she likes to put color in her hair, I use the pastel chalk, it works really cool and washes out really good. Of course I wear plastic gloves or else I will have the color all over my hands. I have a few pics, it's a little lough to spot the purple, but she got it for premature babies and the blue was too dark for diabetes, but she chose the blue because the ribbon is gray and a light blue with a drop of red blood on the end. Maybe you can give me a hand with the blogs here on Share,, usually once I start typing(or talking)about my daughter being born premature, having asthmatic bronchitis, her heart murmur closed off at almost 4 years old, always being very petite and short for her age, and now with her diabetes diagnosis and what we are dealing with I can't seem to stop. LOL!

  • Jami H

    In reply to Mommy2Eleanor~Rose:

    So glad to have an update on Eleanor. I wish that she was feeling better though. There is truly nothing worse than having your child be ill. You just sit there feeling completely helpless. I hope that they can give you some answers surrounding her test results as well.

    I vote yes for the hair color!! I always let Lexi do those kind of things in the summer. She is such a great kid and I think that kids deserve to be allowed to let their hair down (or in this case color it!) once in awhile. We used the kind that temporarily dies it for like 6-8 weeks. Our kids can't wear unnatural colors to school so only during the summer. I sure wish we could talk you into starting a blog for Eleanor Rose. I think her story would reach more of our Share community. She has such an amazing story to tell. She could pick her own blog title. :)

    Hugs to both of you,

    Jami

  • Mommy2Eleanor~Rose

    Hello,

    How is everyone doing? We had a tough day yesterday. Eleanor-Rose has been having stomach aches again and then her morning fasting blood sugar was 258, we did a keytone check and no keytones so that is good. She kept on complaining that her stomach hurt throughout the morning to afternoon. I called both CHLA and her PCP doctor, but her doctor never got back to me. Finally she told me that the pain level was a 5 or 6 and she felt nauseous and wanted to vomit.

    Took her to the ER at a hospital nerby our home cause I didn't have enough gas nor money for parking at CHLA. She ended up having a very high white blood cell count, they did a CT scan to check her appendix, but nothing showed, but they told me to keep an eye on it as it may be the culprit eventually. Right now they said it was a possible bacterial infection, she did throw up in the ER, and was quickly given an IV with meds to stop the nausea and vomiting and for the pain, she felt a bit better after she threw up, but after she had to drink the two cups of liquid for the CT scan she said that her tummy hurt her again.

    She was released with a follow up with her doctor in a couple of days, but we can't get into the office til Friday. She's taking 4 different pills and 1 liquid medicine(that makes her sleepy, oh brother)and Malox. They also told me that she may also possibly have IBS, or even Celiac's cause I have noticed that her stomach will blow up after she's eaten a meal, I know that her Endo will be testing her for Celiacs when we go back for her 3 month appointment on the 22, so we'll just have to see what the results are then.

    I did read her papers that they gave to me to give to her doctor, it has all the results of the test done on her. I did read something in the CT scan that threw me for a loop that they didn't even talk to me about, not sure if they thought that I knew or that it wasn't important to bring up. It said that the CT scan showed that Eleanor-Rose has mild scoliosis, and then it said "which could be positional" meaning that the scan may have showed a curve depending on the position she may have been in, but she was lying flat and straight on her back. So her doctor is going to have to put in for her to get x-rays of her back to see what the results will do.

    I'm trying to think positive and do as much research on scoliosis as I can, sometimes I wonder what other things she has going on with her developementally, she seems to be stiff when she runs, she has a funny way that she runs, and in dancing there are many dance steps where she needs to have a bounce or hop in the step and she can not hop or bounce, and she says that she feels as if she'll fall, but the idea of dragging her from doctor to doctor and test after test may do her more harm than good. Somedays I just wish that a light would turn on and she could do the things that other kids can do, but she's still my precious baby and I wouldn't trade watching her grow and her milestone accomplishments for anything else in the world. Have a good weekend everyone.

  • Mommy2Eleanor~Rose

    In reply to Jackie G:

    Hi Jackie,

    How re you doing? Yes, it's great that her blood sugars have been good, but leat it to this evening to be 220 at bedtime cause she had pizza and mojos from Shakey's this evening, but I know that 220 isn't a very high number, she's still in the honeymoon stage so although the re-increased her lantus dosage(she went from 6 units, down to 5, then 4, then 3 1/2, now back up to 5)I know that once the honeymoon wears off the units will go up much higher, I've been told that once her pancreas stops making insulin completely then her insulin dosages will be more steady instead of going up and down.

    Right now she is making me laugh because she wants to get some colored extensions in her hair since she can not have colored hair at school(like funky colors, not natural hair colors)and she shocked me that she wants blue and purple, she said that she wants them because those two colors represent what she fought and is fighting, Purple for being born premature and blue for diabetes.

    It made me almost cry to hear her say that, she's been so private about her diabetes, but she told me that it doesn't bother her much now, it's frustrating at times, but she knows that she can still do anything she wants and it can't stop her just like being born premature didn't stop her.

    On Tuesday we met a mom and her 16 year old daughter who was diagnosed with type 1 diabetes when she was 12. Her daughter is shy and quiet like my daughter, but it was good for both of them to meet. They stated talking about books because Eleanor-Rose took one of her favorite book series(Twilight)and so they talked about the movies, since she just got introduced to the movies in February. I am amazed, Eleanor-Rose had a very hard time learning to read, and now she loves reading, but usually it's the type of books she likes, she hasn't read a book that her teachers have required her to read, but she will this summer as they gave all upcoming 8th grade students an assignment for the summer.

    Anyways both girls had fun, and her mother and I enjoyed talking about different things besides dealing with diabetes, late night blood sugar checks and insulin dosages and what foods with carbs stick on much longer. After the girls exchanged phone numbers and hopefully they will call or text one another as often as they can. Her mom and I took a few pics and this is the two girls right here. My baby is so short for 13 and Miranda is so tall for 16 almost 17, you can't see Eleanor-Rose's hair, but she had me color her some of her hair, it was lime green(to match her outfit)and turquoise. I found videos on You Tube on how to color your hair with pastel chalk, it's pretty easy  and fun and it washes right out and  doesn't  stain the hair. This is why she wants the colored extensions for the summer. She will drive me crazy but at least  the extensions she wants have a meaning for her. Hope that you all have a lovely rest of the evening and rest of the week.

  • Jackie G

    I'm glad to hear that Eleanor Rose is still doing well with her blood sugars.

    And holy cow!  I can't believe she's going into 8th grade!  Where does the time go???

  • Mommy2Eleanor~Rose

    In reply to Mommy2Eleanor~Rose:

    Hello Everyone,

    It's taken me a while to get the hang of the new site, hope that everyone is doing well. As for us, things are going good, we just take it day by day. Eleanor-Rose's blood sugars have been good, seems to still be in the honeymoon stage, but her fasting numbers have gone up and so her lantus dosage was raised a bit, but not that much.

    She had another performance for the Cancer Society's Relay for Life, it was pretty hot and even though I had her Gatorade and her peanut butter Ritz crackers, she did drop a bit low and wasn't able to go to the second performance for a shorter show, we have another performance later on this month, then the group will be going to Disney CA Adventure Park to perform in their Community Arts Showcase, it will be fun for the kids, cause then after they are free to go on all the rides in the park.

    My baby will be starting 8th grade in the end of August, in 1 more year she heads off to high school, I still can't believe that, time has flown by so quickly,somedays I wonder how my mom or her dad would feel if they were still here with us, I still remember when she was born so early and the doctors didn't think that she'd make it, but she's still her 13 1/2 years later, God is so good.

    I hope that you all have a very wonderful 4th of July, not sure what we'll be doing, financial issues kind of bind us, but things work out. So have a lovely evening and rest of the week.

  • tucker'smom
    Hi,

    I'm so glad that you all had a great Memorial Day! I'm also glad that the recital went well!

    I can imagine how worried you were about her sugar dropping during the dances, glad that everything stayed stable!

    It's great that y'all got in touch with the JDRF they have to s of resources and information. You know how important it is to have other people who understand what your family is going through, that's very powerful.

    Hugs!
    Leigh
  • Mommy2Eleanor~Rose
    Hello,

    Hope that everyone has had a wonderful Memorial Day weekend, as for us we had a good time. Saturday my daughter had one of her dance classes, love it cause it help keep her blood sugar numbers well, she had a dance performance on May 17 and 18 this was the first time that she's danced since she's been diagnosed with diabetes, and I made sure that she was "carbed up" before she danced and was running back and forth so she would drop too low and she did well.

    She met a girl who is a good long time friend of one of our other dancers who has diabetes and they exchanged numbers and the girl told my daughter that she could ask her anything that she'd like to know, so that was nice.

    I have gotten in contact with JDRF and they have a group online so I posted on there and got many responses so I am still playing catch up on there. LOL! But it's been really great to hear from other parents who get it, just like here, we understand how it feels to have a preemie and be in the NICU, I am looking forward to being able to meet some of these parents though, so we'll see what happens.

    So far Eleanor~Rose's numbers have been okay, a few highs and lows, may need to adjust one of her insulin's since her fasting numbers in the morning are getting a little high now, but this is to be expected as her pancreas slowly starts to stop making insulin as time goes by, but as time goes by she is doing well.

    Hope that you all have a wonderful rest of the week, can't believe that June is just 5 days away, half a year down, wow how times just flies these days. Take care and God bless.
  • tucker'smom
    Oh and the carb free snacks sound yummy!! :cool:
  • tucker'smom
    Oh, thanks for sharing the pics, she is beautiful!

    I understand the struggle of thinking that the NICU and the hard days are somehow behind you, just to find out that they are definitely not. My 6 year old has several health issues, and at one point he dealt with high blood sugar as well. He actually just went to see his endo dr last week and his A1C was around 5. He said it was perfect, and Tucker doesn't need insulin shots or anything.

    That is great that she is working to make those choices about when to add her sweets into her diet. She could be like me and demand sweets at every meal. :wink: That wouldn't work! She is actually learning great life skills to take care of herself in the future, but wow, that must be hard.

    I'm glad that your brother is coming around!

    Ok, so I understand the honeymoon phrase a little better, your doc means that the pancreas finally gets a break so things level off for a short while, until it gets scary again, right?

    Has your daughter joined any diabetes support groups? Our state has summer camps and other meetings for kids and teens with diabetes, it really helps them to feel good about themselves and learn they aren't the only ones dealing with diabetes. Maybe you can look into it!

    Leigh
  • Mommy2Eleanor~Rose
    Hi Leigh,

    Thank you for your kind words, we are doing our best to keep on track since my daughter was diagnosed with her diabetes.

    Well the Endocrinologist said that the "Honeymoon" phase happens after the patient is diagnosed with diabetes and is then given insulin to bring their blood sugar numbers. The pancreas, which was working overtime to produce insulin is now getting a break and then after a while it will start to make insulin which will then cause your blood sugar to go down, but if you are taking insulin you could drop too low. This is why my daughter's insulin ratios are so low right now, but once her pancreas stops working and is no longer making insulin, then her insulin ratios will be increased.

    Her A1C hemoglobin number is very good, the Endocrinologist would like her to be between 5-7%, children who are younger, like babies, toddlers, and under their teens I guess they prefer their A1Cs to be a bit higher than 7 as too many lows can cause problems for them. The A1C test shows the doctors what has been going on in the patients blood for the past 3 months to see how much sugar is in their blood.

    My daughter doesn't necessarily say no to sweets. LOL! I am just thankful that for now she isn't a sneaker, she does like cookies, ice cream, cake and candy every once in a while, but she just now thinks things through, would she like the carb snack with insulin or have a carb free snack with no insulin and maybe just add the sweets to her dinner carb count for dessert? It's not always easy, but she is trying her best, but we were also told not to deny them, if they want the sweets they can have it, they just need insulin and as always just have it in moderation. The only things that she can't have anymore are all drinks with sugar, it causes their sugar to spike too high too quickly and even the insulin can't lower it down in time. She drinks Pepsi Max, she likes it best, Crystal Light drinks, some other sugar free drinks, but of course she needs to drink lots and lots of water.

    Her favorite low/no carb snacks are pepperoni slices, those little Bonbell cheeses, or string cheese, slices of roast beef, turkey, or ham and she love pepperoncinis, she can't get enough of them, even loves them in her omelets. Of course I make many of her omelets with egg beaters to keep her cholesterol levels good. LOL!

    I think that my brother is coming around, the other day he bought a bag of Mother's mini iced oatmeal cookies the other day and said that he bought them for the two of them, of course he scarfed most of them down with his coffee the other night, but she ate her share yesterday. LOL! We had bought some one time and she told him that she got those to share with him, he asked if she could eat them and she just said yes. Hopefully he has done some reading on it on the internet, I try not to push things but will give people info if they ask.

    Many people get type 1 and type 2 diabetes mixed up. I have type 2, my dad has it as well as many of his sisters and his mom had it, one of my younger brothers has it, type 2 diabetes can be reversed sometimes through lowering your carb intake, being physically active, weight loss and checking your blood sugar regularly.

    Type 1 Diabetes can not ever be cured or reversed, it is an autoimmune disease as I said where these antigens in your body start to attack your pancreas and it will stop making insulin altogether. This is why you need the insulin injections in order to survive.

    As I said in one of my previous posts, I thought that once we got out of the NICU and dealt with her development issues as she got older that we were done, but it looks like we have yet another mountain to climb, and this one is for life, but I look to God to see us through this as I always have, and I just keep encouraging my daughter to not let this disease control her, but to control the disease, that's half the battle there. Take care and have a blessed day. Here are a couple of pics of my baby, the first was her at 10 days old, she couldn't wrap her finger around my pinky, then the other was taken on Good Friday at our church, she's 13 no, will be 13 1/2 next month.
  • tucker'smom
    Hi,
    I was just reading over your last few posts. Wow, you all have been dealing with a lot! I remember that as a child one of my biggest fears was having diabetes because my best friend's dad had it. He had to take shots every day and had to limit his sweets, which just sounded like the worst thing to me. Kids, right? lol

    So I am proud of your daughter for saying no to sweets and carbs when she knows she's had enough. Hopefully she notices that she feels better when she takes care of herself, has that been the case?

    It sounds like such a tricky place to be in, managing her insulin and diet so that she doesn't have too high or low Blood Sugars. I agree, that is scary! It sounds like your medical team is on your side, although I don't understand the "honeymoon" term as applied to Diabetes. I only heard about the honeymoon stage in the NICU, which is the first few days after birth when the babies still have the steroids from their moms in their systems.

    I'm sorry that your whole family isn't on board, if they took the time to be educated a little then it would make things much easier on you and your daughter.

    I hope that her A1C and other numbers continue to improve and/or stay great!

    Keep us updated!
    Leigh
  • Mommy2Eleanor~Rose
    Hello,

    Hope that everyone is doing well, as for me I've just been a bit busy and out of it. I haven't seen any posts on here so I don't know what else to say.

    Eleanor~Rose had her 3 month check up with her Endo at CHLA and her Hemoglobin A1C was at 6%, this is so awesome since she was at 11% when she was first diagnosed.

    Her test for Turner's Syndrome came out fine, she's just short for her age because of her being born premature, she is being tested for Lupus now because she has low muscle tone, she has a hard time jumping, when she runs she's very stiff, and in her dance class her teacher is worried that she could hurt herself because she's isn't very loose or flexible.

    Right now she's still "Honeymooning" as they say. I find this ironic as I remember when she was born, the doctors told me that she was in the "Honeymoon" stage because she was doing so well in her first day of her birth, but then things would change. Seems like they like to use that word a lot in the medical field.

    Seems that since the insulin injections are giving her pancreas a rest, the pancreas is still making insulin, this also causes her blood sugars to drop even more with insulin and so her insulin/carb ration needed to be changed. She was getting 1/2 a unit of humalog(fast acting) insulin per 15 grams of carbs that she'd eat, now it's switched to 1/2 per 12 grams of carbs at breakfast, after school snack, and dinner, and she still is on 1/2 until per 15 grams of carbs at school during lunch. And she gets 3 1/2 units of Lantus(a slow acting insulin) at bedtime.

    I now need to keep a look out for when her morning fasting blood sugar reading start rising above 120, then they will need to up her insulin. It's a bit tedious, but we know that this is always a learning experience for us, and eventually things will start to go a little smoother.

    I do fear things though, like her blood sugar dropping too low or going too high that she'll end up in the hospital because Diabetes is just so unpredictable. And that fact that I have type 2 sometimes I am so busy dealing with my daughter's diabetes that I forget to check my blood sugars and I am such a sweet tooth, it's so hard to stay away from sweets. My daughter has a stronger will than I do, but her thing is, is that she loves, rices, pasta and potatoes, and would ask for second servings in the past, but although I don't deny her anything (except for regular sodas, punches, and juices) but has it just in moderation.

    I hope that you are all doing well and hope that you have a wonderful evening, and rest of the weekend.
Related
Related Tags