The club I never expected to join

Parents
1

Before I got married and then again before my husband and I decided to try to have a child, I talked to my endocrinologists (two different ones) and both said that the risk of me having a child with type 1 were just slightly more than the general public.  This was in the mid to late 90's and just at the start of the Internet as we now know it:  finding information was extremely difficult.

Those discussions made what happened in the summer of 2004 extremely shocking to me.   We moved to a new city at the end of July, just a week after our oldest daughter turned four.   Our old house had not sold yet, and we were in the starting stages of building a new home in our new city, so we rented a two bedroom apartment.  The girls (youngest was two and a half) started at a new daycare the first week of August and both my husband and I started new full time jobs.

After the first week of August, we noticed Ellie started waking up in the middle of the night asking for water.  We wrote it off to sharing a small room with her sister and being in a completely new environment.  Over the next two weeks, the waking up in the middle of the night turned into waking up multiple times per night. She developed a habit and got hysterical when we refused to give her water.

The weekend of August 28th, we went up to my parents house to celebrate my 30th birthday coming up that week.  We had lunch on the deck looking over White Lake and I mentioned in passing Ellie waking up asking for water.  One of my mom's friends was really concerned, but I assured them that it was soooo unlikely to be diabetes, that was just silly.  She had just a slightly higher risk than their grand-daughter.   I told my mom and her friend we would be sure to mention it to Ellie's new pediatrician at her first visit there for her 4-year appointment.

We setup a dinner date to meet my husband's father to celebrate my birthday at 5:30pm on Monday night.  Ellie had her appointment at 4:30pm that afternoon.  The entire family went to the appointment to meet our new pediatrician.  I mentioned to the nurse the extreme thirst and they had Ellie urinate into a cup and then we waited for the doctor.  About 15 minutes later, there was a knock on the door and a man I had never met said to us:  "I'm sorry, there is glucose in her urine.  Your daughter has type 1 diabetes."  The first words our pediatrician ever said to us and my world crumbled.

We spent that night in the hospital, and the next day, August 31st in a pediatric endocrinologist clinic.  It was my 30th birthday.

This group is for those people out there, living with type 1 who lived through having their child diagnosed.

 

 

2

Hi Katie, I don't have diabetes but MY mother (dx'd at 13) & female cousin (dx'd at 17) do.  I was also told that my son (age 5) was far less likely to have it.  My daughter(17), born many years before has been watched since birth.  We we're always told it skips generations, stays within the sexes etc.  She so far, has not had any indications. 

All that to say, low & behold my son was diagnosed at 2 1/2.  Talk about a blow! They have no theories for this of course.  I'm learning more & more everyday from this site and can't wait to form friendships from it. 

3

[quote user="Kelly Batch"]We we're always told it skips generations, stays within the sexes etc.[/quote]

There is so much mis-information out there.  It really starts to anger me.   I'm sure your mom was devastated as you were after his diagnosis.  It's just such a shock and of course, people just don't get it:  "at least you know about diabetes", or "she's lucky to have a mom who has it too".   Yeah, Ellie's lucky alright.

4

Kelly, I totally know what you mean. I'm a pediatric nurse and have several people in my family that are nurses too. However I am the only one of the cousins or siblings that are in healthcare. I have an Aunt who told me that it was better that it was my kid over one of the other cousin's because I knew more about diabetes. The truth being that I probably didn't know any more than they did about "life" with diabetes, but you just have to take those comments in stride I guess. But I know where you have been!

5

So you have diabetes too?  our son was diagnosed in 2005 when he was 6.....I never dreamed it would happen to us either. My husband has 1 uncle who had been diagnosed at age 10.....other then that...we never thought of it as a possibility for one of our kids.......after nearly 4 years now, my son is really getting burn out.  He does great though and always talks about what we can do to find a cure.......

6

ALthough I do not have T1 - my DH does - and I am the one who does the internet thing! LOL  Anyhow - I also asked my OB/midwife and had DH ask his endo when we were planning to have kids (back in the late 90's)  and were also told it is not really confirmed that it is genetic.  Which is funny bc my DH's sister also is T1 (since age 12).  I watched DH get sick in early 90's when we were early dating.  He lost 30 poind in less than a month, and would stand at the toilet at night drinking while peeing.  It was really scary - at the time I knew very little except that his sister had t1 - but did not know symptoms or anything.  BC of his age he was told he had type 2 and was put on meds for about 2 weeks and ended up in DKA and was then put directly on insulin.  He is healthy, runs marathons and we NEVER expected that we would have a child with T1.  If anything we figured our grandchildren would - bc "it skips generations - if it is even heriditary" what we were told. 

Well last summer when Willow started showing signs - I was the one to see it.  Either DH did not notice really or saw it but did not want to see it.  Luckily I knew the signs and had been watching her for months bc she was falling off the growth charts, kept getting viruses and was just irritable and tired for months.  It was not until the last week that the frequent peeing and thirst came.  One night I asked mark to leave out his meter in the morning - I wanted to to a fasting on Willow and she was over 300.  that was the beginning of our journey . . .

It was terrible in the beginning . . .I was in tears, felt responsible, helpless and always worried . . .Mark thought he was losing me and did not know what to do and felt so guilty that "he had done this" to his daughter.  We have really grown as a family since then.  Willow's dx got Mark to consider a pump and he is now pumping with OmniPod and Willow started on the Animas Ping in Feb.  Both of them have really improved thier A1c's and I am always so amazed at how resilient and strong Willow is. 

Since her dx - mark has started counting carbs, he used to guestimate, and he tells me that he has learned so much about the disease since I am constantly reading, researching and trying to understand as much as I can so I can take care of Willow the best as we can.  She can do most of her pump functions on her own - but I never make her have to take on full responsibility - only if she wants to . . .

We are now watching our youngest daughter who is showing some early signs - not dx-able yet - but a frequent pee-er and often thirsty.  normal A1c, (5.3) and usually normal BG - her highest has been about 140 - 2 hrs after eating and fasting always normal.

I do wish that Willow could meet more kids who are like her - and I look forward to her going to camp this year . . .

Glad to be here - but wish I didn't need to be!

7

Hi Vicki - nice to meet you even though I'd rather not have needed to.    I am sorry to hear about Willow's diagnosis.  I'm sure it turned your world upside down just like it did your family.

I was wondering... have you done TrialNet with your youngest daughter?   Might give you some piece of mind instead of just her liquid consumption.  There are trials delaying the onset of type 1 and even some prevention trials.   

8

I called and signed up on line - but have not had any follow up correspondence.  I need to make another call.  the closet site to us is in Pittsburgh.  About 4 hours from our home.

We actually go to see a nephrologist and urologist for Haleigh in about a month - just to rule out any kidney, or urinary sensory issues.   She seriously has about 10-12 accidents daily - refuses to wear pull ups/diapers as she thinks she is trained.  Her nighttime pull-ups are thoroughly soaked and sometimes I have to change it by midnight bc it is so soaked and leaking out.  She just has to go so much.  I need/want to place one of those "hats" on the toilet and have her pee in it all day to see how much she is actually voiding.  Her pee smells very sweet - almost molasassy (I nkow that is not a word - lol)  I have tested her for ketones always negative - although Willow has never had ketones - Mark has only once had ketones and that was at dx. 

I try not to think too much into it  - but the knowledge that siblings can both have D - makes me worried!  Our middle child has no symptoms other than she is still a bedwetter - but no other symptoms.  Both Ava and Haleigh (our younger 2) are getting fully antibody tested.  I don;t know if that will help or not - bc I also know that some people with the D do not have the antibodies!  So who knows.  All we can do is love them where they are - and watch for any signs or symptoms and take care of it if it should develop.

And thanks for the reminder to check into the trialnet again . . .I think I'll call tomorrow!

 

 

 

 

9

Hello Katie, I am reading your story and it's like looking in the mirror. I have type 1 diabetes , and my daughter got diagnosed a month before my 30th birthday, she was 3.5 at the time. I remember the first time she went to the bathroom at night by herself, my husband and I were happy that she did it by herself and did not wake us up... she got a cold and was drinking a lot, we just thought she'll get better... After few weeks, I saw that she is not getting better and decided to check her. My husband didn't want to do it and said that it was all my imagination. BTH he is a doctor, and he was crying like I've never thought he can when I Finally checked her sugar one day, and it was 455. Can you believe that  I also called her day care and asked what were kids eating for pm snack that day, "thinking" that it might have elevated her sugar.... I know, now it sounds funny.

We spent in the hospital few days, and it was the worst time ever for me. Social worker was trying to calm me down, I was rude to her and said that she can only talk to me if she has a child with diabetes and knows what I am feeling.... On the good side, the doctor who was treating Julie had diabetes. He was the only person that I could trust at that point.

Right before and during pregnancy, my HA1C was below 6, she was born normal weight and on time. her blood sugar was 54, but the doctor told me that it was because they were giving me more insulin during delivery. I was checking her sugar  few times when she was a baby, it was normal, and I stopped when she was 2.

I was blaming myself for a long time, I stopped taking care and controlling my diabetes. Last year my hubby started talking about having another child and I got very scared. I didn't want to think about what might happen again... But lately I am re-thinking this decision.  A lot of people on this site give me hope that everything will be OK. It's a long way for me still, but I am getting there step by step.

Julie is almost 7 now, she is still on insulin shots twice a day. Twice we had low blood sugar episodes at night time, and it was unbelievably scary, I hope it will never happen again. I am on shots also (Humolog and Lantus), but will try Omnipod next month. Julie already tried the demo packs and loved it. But I want to try on myself first and learn how to use it.

Thank you for reading my story.

 

 

10

Hi Yael - we do share similar stories.   I screamed at a few people in those first few days after Ellie was diagnosed who said things like - "oh, she's so lucky to have a mom who knows".  ARE YOU KIDDING ME, PEOPLE?   And these were my friends calling, and I can see now they were trying to be nice, but then - oh, I was mad.

  I also think it's interesting how you & I who know so well the symptoms of type 1 can bury our heads in the sand and come up with so many reasons why our kids are showing those symptoms.  Really - we did catch Ellie early - her BG at diagnosis was 350, but still there were weeks (almost a month) of us seeing the symptoms (oh, and ask me why I didn't check her on my meter myself - why wait for doc?  Hello.).


I hope you like the pump.  I think you will find the insulin pump will make your control (especially if you do get pregnant) much more manageable.  I know quite a few OBs will put women with gestational diabetes on pumps for the duration of their pregnancies.   The ability to fine tune the control where needed throughout the day is especially important when pregnant. 

I have found that Ellie & my story is a bit of a shock to young women with type 1 (terrifies them of having a child with type 1), but is an inspiration to parents of newly diagnosed kids.  They see a person who has a full time job, a husband, two kids... all those things that they think have been stolen from their kids right after diagnosis.  

It's nice to meet you.

 

11

Thank you Katie. I already contacted Pumps Representatives, so it's in the works now. Since I can't use Lantus during pregnancy and will have to change insulin anyway, so I might as well try pump. I chose Omnipod for myself, and my daughter wants the same obviously. I was a little afraid that it might be too big for her body, but after she tried a demo pack for few days she was fine and it did not bother her.

Is your daughter on a pump too? Which one does she use?

At our hospital we have Support group meetings for the parents with the kids with Diabetes. We meet every 3 months and it's very helpful for the parents. Kids are playing, checking their sugars, eating snacks together and parents discuss their problems or just vent. I am the only parent with diabetes there, but I does not matter since we ARE ALL in the same boat caring for our kids...

Have a nice day!

 

12

Hi Katie,

Your first paragraph I could have written.....

I too am Type 1 (diagnosed at 12) and have two daughters (17 & 13).  I also consulted with my doctors before I became pregnant and was also told that the risk of me having a child with type 1 were just slightly higher.  I guess I had it planted in my brain that my children would never get diabetes or believed the old wives tale of skipping generations.  Anyway, my worst nightmare came true.

My youngest daughter was diagnosed 2/08.  I was devastated and couldn't believe it.  I felt guilty that I didn't reconize the symptoms earlier but the signs were not unusual for her.  Even as a toddler and young child she would drink alot so I chalked the thirst up to that.  She was not eating well...but she was picky eater.  Had headaches....but thought it was sinuses.  It wasn't until we went to a Jonas Brothers concert and my daughter bringing up Nick Jonas having diabetes that it triggered me to check her.  It was as if a light bulb went off and I was like....why didnt' I think of this earlier.  I blamed myself...and felt very guilty.

Luckily, she was diagnosed before she became really sick and her symptoms only showed up a few weeks prior.  She is adjusting but as you know it gets overwheming at times taking care of yourself along with a child.  Currently she is taking multiple injections but I'm trying to persuade her to go on a insulin pump.

Just wanted to say I'm not glad were here but glad I found there are other people in the same situation so we don't feel so alone.

Take care,

Lesia