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My Daughter Has Type I Diabetes

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One mom shares her emotional journey.

Brynn

Christina Coleman: Last week, my daughter, Brynn, was diagnosed with diabetes. I had almost missed the warning signs ... and want to share my experience with other moms so they don't do the same.

Several "things" had been going on with Brynn for the past 3-4 weeks, all of which seemed essentially unrelated:

(1) She was always complaining about being tired. Our response to this was to keep trying to get her to bed early.

(2) She was eating a lot at meals, but she was looking really skinny. We thought she was having a growth spurt, which might also explain the fatigue. We figured her little body was just burning through the calories so fast and hard that she was exhausted.

(3) She was thirsty a lot and drank a lot, and then she was having to pee a lot (from what we could see). We told her to quit drinking so much and she wouldn't have to pee so much.

(4) She seemed to have started sleepwalking, where she would get up about an hour or so after she went to bed and have to go to the bathroom, but she'd be disoriented and stumbling around, and sometimes would have trouble finding the bathroom and had a few accidents. We kept making her pee before she went to bed (we did anyway), but we figured this was caused by the fact that we'd just moved back into our newly remodeled house, since the parental websites indicated sleep disorders were often triggered by big changes. Once, though, about 1.5 weeks ago, she got up twice in one night, the second time only half an hour after the first, and I was in her room both times, I heard how much she peed both times, and I thought, how is it possible that her little body made so much pee in half an hour when she didn't drink anything?

Last weekend, we went to the 1st birthday party for my cousin's daughter, and Brynn was lethargic, and didn't want to run around and play with the other kids. It was really hot outside, so I figured maybe that was it. Or maybe she was just being grouchy.

She also looked stick-thin in her little bikini. I began to think that maybe she had a thyroid condition, which I was diagnosed with around the age of 19-20. I had been told that it was very hereditary, especially from mothers to daughters, and I'd been very fatigued as a result. We were planning on taking Brynn in to see the doctor the following week if we could get an appointment.

The very next day, with some of our other cousins, we dragged 8 kids between us to a perfect day at the beach. We had decided to go to Zuma instead of Santa Monica, and the traffic was horrific, so we spent a long time in the car. Brynn had to pee so bad she was crying, and we had to walk up to the bathroom while my husband, Bryce, was in the parking line. I actually chastised her for not peeing before we left the house.

That day, for the first time ever, I was able to see just how frequently she was going to the bathroom, because she had to ask me to either take her or watch her walk over to the bathroom. Normally she is at school, and even when we're home, she doesn't tell us every time she has to pee, so we didn't know. But we did on Sunday. She was going like every half hour. When we were leaving, we made her pee before we left, but half an hour later on the PCH, stuck in traffic, she was crying she had to go so bad, and when we pulled over and I took her to the side of the road, another torrent of pee.

When we got home, I did a search on the Internet for "frequent urination" and "fatigue" and what popped up was hyperglycemia. When I looked through the other symptoms -- big appetite, losing weight, among others -- I knew that's what she had, but I did not know for sure what that meant.

The very next morning, Monday, Bryce took her to the doctor, who confirmed my suspicions and charted her glucose at 477 (normal is about 75-120). She had also lost an alarming 10 lbs. since her checkup at the end of April, nearly 20% of her overall body weight.

Bryce was told to take her to the ER immediately, which we did, and we didn't leave until Thursday. Brynn was diagnosed with type 1 diabetes (the genetic kind, not type 2, which is caused by lifestyle factors, obesity, and/or age) and spent the first 24 hours in intensive care because she had been running hyperglycemic for long enough that she had ketones built up in her body (which I understand are essentially poisons) and, in the words of the ER doctor, "I'm not going to lie to you, she is a very sick girl."

Brynn

The first few days were horrible and tough, and Bryce and I were beating ourselves up for not realizing sooner, and for actually chastising her for things that were the result of her poor little body failing her (I'm still having trouble with that last part). There is zero history of type 1 diabetes on either side of our families, so to say we were caught off guard is a gross understatement. Bryce and I alternated being wrecks, but we supported each other and kept a brave face in front of Brynn at all times. Those were the days the prayers and thoughts of friends and family helped the most, because I have never been so scared in my life or felt like a worse parent.

The good news is, with the IV and insulin drip, Brynn regained her strength and flushed out the ketones faster than expected, and only had to spend 24 hours in the ICU before she was able to be transferred to the regular pediatric ward. Every day, she had more and more energy, and we had our old Brynn back. It had come on so gradually, we had almost forgotten how vibrant and silly she used to be.

And Brave. It has been less than a week since this nightmare started for us, and Brynn is already pricking her own finger and testing her own glucose; she doesn't cry or even flinch anymore when she has to take her insulin, and she doesn't complain about anything. She said the other day, "I wish I didn't have diabetes," and I told her that if I could take it away and have diabetes instead of her, I would, but I can't. Later she said she's glad she has diabetes because now she gets treats all the time, and we had to snap her back to reality on that one too, and tell her that no, she doesn't get treats all the time. Sorry, missy! (We did find out though that we DO get to jump the lines at Disneyland and Magic Mountain, etc., from now on, as will those who are in our group, so she'll be the most popular kid in school once word gets out on that one!)

I wanted to share my experience with other moms in case your kids ever have the same symptoms. If any of you have kids with diabetes, I'd love to hear your experiences or advice. Please share them by commenting below.


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28 comments so far | Post a comment now
Belinda July 23, 2009, 7:59 AM

Thank you for sharing your story.

Kristen July 23, 2009, 8:27 AM

Great story, definately something all moms should read. I don’t think I would have connected the dots either. Best of luck to her and your family.

Anonymous July 23, 2009, 9:08 AM

Thank you for sharing your story. Don’t blame yourself for missing the warning signs, I would have also.

Sara Jane July 23, 2009, 12:46 PM

This was an awesome story - one of the very best that I have ever read on MomLogic!

Go Brynn!

Thank you Christina and Brice!

MrsDesperate July 23, 2009, 1:34 PM

Your poor little girl. My husband has diabetes and it is a sneaky, tricky disease to get right. At least you managed to get her help before her condition worsened. I’m so glad she is doing better and is returning to health. What a brave little girl. My husband has also found an advantage to diabetes: He gets to jump the queue at airports! All the best to you.

Magan Boyle July 23, 2009, 2:25 PM

I too have to tell you our story. I am a mom of 7 girls and a new baby boy. My 11 year old daughter Kaitlyn had been complaining of tummy aches for a month, she started coming home early from sleep overs because she was so miserable, I did notice she was drinking alot of milk but I didn’t notice much else I have 8 kids so I didn’t notice any change in eating or drinking until it was almost too late in a matter of days Kaitlyn nearly died monday july 6th she was tired and not feeling well, she was also sleep walking alot, neighbors found her wondering around at 1 am after 4th of july. Tuesday she was vomiting and drinking a ton, I take her the pediatrition thinking its flu, she tells me its probably an ulcer, she prescribes pepcid and sends up home, by wed morning july 8th kaitlyn is unresponsive and struggeling to breath, once in the ambulance I asked the paramedic to humour me and check her blood sugar, it was so high it could not be read on the meter. Once we were at the hospital, we were told her sugars were 762! she was by then in pretty severe ketoacidosis, she was in the icu for 3 days, and was hospitalized for 6. I also feel bad that I got after her about what I felt was poor choices regarding going to bed earlier. Its been a huge adjustment and we were just told yesterday that she also has celiac disease which mens her body cannot break down wheat and gluten. I often feel alone with all of this and would love to talk to anyone going threw it. Darlingmeggy@gmail.com

Pete Lindemann July 23, 2009, 3:16 PM

My son, now 14, was diagnosed in Oct of 2007. He was peeing alot having night accidents etc.. so we thought he might have a UTI. We wished it was that simple. It’s pretty tough in the beginning but it does get better to manage. He now has an OmniPod insulin pump which is way better than injections. There are lots of good resources of help out there. One good one we joined is Children With Diabetes and Friends For Life they have conferences every year that are very helpful

Nancy July 23, 2009, 5:52 PM

I had similar story as you have. My daughter was diagnosed type 1 diabetes last year when she was 11 after having chicken pox. I noticed all the obvious symptoms but never linked them to diabetes. No history of any type of diabetes on either side of our families.

After I noticed all the symptoms, I brought her to doctor and but was told her body weight was still in an accepted range. It seemed doctor was not being convinced by my describing her frequently going to bathroom and taking lots drink and losing weight. I asked for urine test but showing normal(Doctor didn’t test her ketone!). I was released a bit. Then I asked for blood test. As I was released so I booked blood test to the time my daughter having school holiday which was nearly 3 weeks late. The blood test showing her sugar level was 28(UK) which is equivalent to 504 in USA. She was asked to go to hospital immediately.

Watching her injecting herself burst me into tear. It took me a few months to calm.Now I add myself to “Google alert - type 1 diabetes” list. I am following the latest type 1 diabetes news and research progress and wish my daughter will not be missed by possible cure if there is one break through.

Claresa Levetan, MD July 23, 2009, 6:50 PM

Wonderful story. I hope and pray and spend all of my working days and nights on a new treatment for type 1 diabetes. It is my committment to Brynn that she get off of insulin sooner than thought humanly possible.

Sincerely,
Claresa Levetan, MD
www.curedm.com

merry July 23, 2009, 9:06 PM

Thank you for posting this story. I work with children in a school setting, and so I am always glad to read stories that can help in regards to health issues. Who knows, your story may end up saving some lives down the road! I wish you and Brynn all the best.

Laura H July 23, 2009, 9:58 PM

I don’t have a child with diabetes, but I was one. I was diagnosed at the age of 3. I’m 37 now, have had two beautiful children of my own and am in great health with no complications as of yet. My biggest piece of advice is to find a diabetes camp and send her next summer. I attended camp from ages 9-16. It was the best week of every year. IT’s wonderful to be surrounded by other kids who have to go through the same things you do (shots, bloodtests, pumps etc). Plus they do a great job of educating kids in a way they get. I credit my health today to my mom and diabetes camp.

Vicki F July 24, 2009, 12:15 AM

Your story brought back lots of terrifying (and very similar!) memories. No Type l in our families either til my son was diagnosed at age 12 after a bout with stomach flu. He is now 27 and in great health, by God’s grace! He takes good care of himself & is faithful about testing. You have a beautiful daughter! After a while, you learn to work everything into your normal routine, like showering or brushing your teeth,and it won’t seem so complicated or inconvenient. But for now, well, TRY to relax, learn all you can, and watch her grow up!

Stacey Simms July 24, 2009, 4:46 AM

Thank you so much for sharing your story and helping spread the word about type 1 diabetes. My son was diagnosed at 23 months (he’s now 4). I’m a radio host in Charlotte, NC and I keep a blog about diabetes. If you like, you can see it at www.staceysimms.com. Yes, I’m also selling a book (for JDRF) on that site, but you can just click on the blog to see our journey over the past 2 1/2 years. Best to you and your family!

Michelle July 25, 2009, 12:35 PM

I’m glad she’s feeling better. I wouldn’t beat yourself up about not figuring it out sooner. Both of my parents are pharmacists and thought she had a series of UTI’s. The urine analysis showed high ketones, and she was admitted into the hospital soon afterward. Diabetes is tricky— it’s the last thing you’d think of a 9 year old having.

My sister was diagnosed at age 9 with Type 1. She’s 19 now and doing well for herself. That’s not to say that it hasn’t been hard, especially when she was going through puberty because of all the hormones involved and the fact that her body doesn’t produce one (insulin).

As a sibling, I agree with the other postee’s that say to take her to a diabetes camp. The one in our area was sponsored by The Lion’s Club. There should also be Type 1 Diabetes support groups for kids. My sister belonged to an active one in our area— it was a group of moms who met with their diabetic children and did different activities/trips.

Lindsey Kelly July 26, 2009, 1:14 AM

so long i thought i was the only one out there with type one diabetes im going to be 16 year old in august. i have, had diabetes since i was three month old. i have no paques, because i was so young the doctor where able to remove it.the doctor told my mom and my dad she might not make it. i proved them wrong! when i see your daughter i think how brave she is to do her shots and check her blood sugar. this diabetes is all i no and always will. i no what she saying about the snacks it make her a little bit different from her friends and plus she get to eat when everyone else is hungary haha thats kinda of a good thing. i no that this is different for you and your daughter. there will be lows and high at time but that only going to make here understand more and stronger. im am happy that you posted this. i wish i could meet her :) she is a very pretty girl good luck to you both. if you have any question im your girl i no more then most doctor!!!

Poonam Yadav July 29, 2009, 2:12 AM

Yes the sufferings for the parent and the patient are same the world over. My seven year old daughter underwnt same. Imagine our plight here in India, where there is so little awareness about type 1 diabetese. But only thing that can keep( Now) the diabetese related complications is ALERTNESS and a FIGHTING SPIRIT, Dont feel wrecked, instead face it. I am sure a cure is not far off in the form of STEM CELL. I appeal to all and sundry to FREE STEM CELL RESEARCH for the sake of these Lil KIDS.

AnotherOne July 30, 2009, 1:02 AM

Heh.

That is exactly the way it went down for my 5 year old only it happened the ONE and ONLY time my /hubby and I had to leave her for more than a day.

And that was an obligatory business trip.

Ugh, life, ain’t it grand?

Benjamin July 31, 2009, 1:43 PM

This story is very similar to ours. Emma was diagnosed on April 3rd 2009. She was getting ready to turn 6. We had pretty much all the symptoms you mentioned and we even once had a doctor tell us it was nothing. After the school nurse called for the third time convinced something was not right, we got a second opinion and within 10 minutes we were on our way to Childrens Hospital in St Louis. Four months almost and it is still all so hard to deal with. I wish you all the best. I think I need to find a support group or something because it really causes alot of new stress at home. Stay strong and remember how nice it is to have your silly playful little girl back, that is what I tell myself. If my little girl feels better then I can monitor all the carbs and insulin, even though it is a huge lifestyle change.

Christina August 6, 2009, 1:10 PM

I haven’t looked at the posts in a while, and I am overwhelmed by the response for my story and the well wishes for Brynn. We are still learning so much every day, but are coping well, and optimistic about the advancements in technology and medical research. Thank you all for sharing, and offering such great advice. When Brynn gets older, I’m going to show her this article and everyone’s kind words and shared experiences, and I know she will also be so grateful. THANK YOU!

Christina (Brynn’s mom)

rh August 10, 2009, 6:57 PM

“the genetic kind, not type 2, which is caused by lifestyle factors, obesity, and/or age”

You are wrong about Type 2, my 12 year old has it. Please check your facts about how Type 1 and Type 2 differ, and that children can have Type 2 and adults can find they have Type 1. My 12 year old is thin, he has a genetic link because Type 2 is resistance to insulin which is considered autoimmune, and he is an excellent athlete who eats well.

You are new to the diabetes world, as are we, but check your facts before you write an article. You yourself say that there is no one in your family with Type 1, so you better be on the lookout for another illness like an underlying mitochondrial or autoimmune disease causing the diabetes.


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