When does it get easier?

Hi everyone!  My name is Kelly, my daughter was diagnosed a year ago, just 2 days after her 3rd birthday.  The week leading up to her diagnosis she seemed to be comming down with a cold.  She was still potty training and  had a few diapers that leaked through during nap time.  On the night of her Birthday, a Thursday, she was extreemly irritable, we thought WOW bIrthday overload.  The next day she was sent home from daycare for vomiting and with what was suspected to be a stomach virus, it was going around.

That night my husband and I slept in the living room with her trying to keep fluids down, giving her gingerale (not knowing) and keeping a close eye on her.  By the next morning she had started to keep some fluids down, I called her pediatrician at 8:30 to let them know what was going on and they said, keep an eye on her sounds like maybe the virus is making its way through, but if anything changes we are here until 2.  

Shortly after that things started to change, all of a sudden her words didn't make sense and she looked off.  I thougth, no i don't like this, I'm taking her to the Dr, i packed her in the car and called the pediatrician on the way.  In the 10 minutes it took to get to their office, her breathing had become a bit labored and she did not look well at all.  I walked in holding her, the NP came in looked at her, didn't examine her and said to me 'OK, I am going to call Winthrop and you are going to head to the ER".  

On my way to the ER, still thinking that my poor baby was dehydrated and how was I going to handle them sticking an IV in her to hydrate her.

When we arrived at the ER, I ran in with her in my arms, at this point she was lathargic, barely awake and her breating was extreemly labored, all this downfall in less than 2 hours.  They took us right into the pediatric ER.

EVERYDAY I THANK GOD for the attending physician that was on that day. As I walked by with her he asked the nurse to get a blood sugar.  While others were already checking my daughter out and already determing they were going to need to start a line, the nurse came over with this huge hospital meter and all it would register was "CRITICAL HIGH"  It was at that moment the Trauma Team arrived and I didn't know what was happening.

Before I had time to think, the Dr grabbed my with both hands and said, "It is 99% likely this is the onset of diabetes, and she will be ok".  

Every Dr. in the ER was working on my little girl, trying to get an IV started, trying to get an actual Blood Sugar, she was so little and so dehydrated they were having trouble and finally the Dr went right into her vein, no asking, he needed to save her life, AND HE DID.   Her blood sugar was 975.

The incredible doctors there did their jobs incredibly, at no point during our stay did I even know that my daughter was listed in gravely critical condition, I found this out later from family.  They just worked dilegently to save my daughter.  

We later found out that they did have her worried, they weren't sure she was going to make it, but she was a little fighter.  We were told that it was likely that a virus had caused the sudden onset, though she would have developed at some point.

When all of this happened, something else in me took over, becasue I didn't really CRY until a few weeks later.  I just focused on learning everything I was going to need to take care of my daughter.

And now, a year later, I ask DOES IT GET EASIER?

Some days we go through so many strips determining is this her being a 4 year old or is this a low/high?  We have battles about food, I know thats normal with any 4 year old but it can't just be she'll eat when she's hungry, she needs to eat.  

And you could wake up with the same #, have the same breakfast, the same insulin dose, the same activity and one day your next check will be ok and the following off the charts.

My daughter is in daycare full time, and they are wonderful about it, but sometimes its hard because eveyone else isn't watching her for symptoms like I watch her.  I have educated many of their staff, but theres always the fill in.  Everytime the phone rings when I'm at work and I see the daycare number my heart skips a beat.  

I find it difficult sometimes to come up with meals that she will eat.  

I know people say it does get easier, and maybe I am just venting a little, and for that I thank anyone who does read my whole rant. I guess I am just looking for someone who understands.

Oh, we walked a similar path with my daughter whe she was also three. My daughter, Anna Claire, was three months from her 4th birthday when she was diagnosed. She is now 9. I am lucky, I guess, that I work in the medical field and my Mom is a type 2. I recognized the symptoms of extreme thirst and frequent urination. The problem is that I was dealing with the possibility that my baby girl could be diabetic. I checked her on my Mom’s meter and it was too hi to read. I brought her to my work( I’m a lab tech) and we checked her on our meter. Still too high to read. We then drew blood and found that she was 734. Funny that I haven’t forgotten that Glu value in 5 1/2 years!! Luckily she wasn’t in ketosis yet and we were able to drive her to the nearest children’s hospital through communication with our pedi. I didn’t know that much about type 1. Would she outgrow this? Would she be on insulin? I remember the ER physician telling me in a very similar way to the dr telling you, that he was pretty sure she was diabetic. He looked me in the eyes and said but this is not a death sentence for her. She’s gonna be fine! When I read your story it was like it all came back to me and I was right back there in that ER!! Things do get some better. As they mature it gets some easier. The pump really changed our lives for the better. My daughter got one after two years of injections. Oh, what freedom it has given her! The CGM is also a very useful tool. We can see the trends happening with her blood sugars and prevent lows and highs. My daughter was finally old enough for camp last year when she was 8. That is pretty life changing too. Believe me, the wacky sugars still happen for no reason and out of nowhere, but things do get easier and become so routine. There are still days that watching her have to deal with this disease breaks my heart, but I see it as a grieving process. I grieved for my daughter’s perfect health and I was angry at times. I cried a lot those first couple if years. These kids are tough and it amazes me how much they go through and think nothing of it. Hang in there!!!

Hi Kelly,

I am so glad to hear that your daughter is alright as 975 is quite the high blood sugar.  It does get easier but your daughter is still young so it may remain challenging until she is a bit older and can begin to understand how her body feels when she is high or low and be able to verbalize this to you.  My son was dx at age 8 but my dad was 18 months in 1941 when he was diagnosed.  It was VERY hard on my grandmother to have such a young diabetic child and my brother was 12 when he became Type 1 and they are both doing wonderfully.  I am also Type 1 but late onset during my pregnancy.  

It may be tough during cold and flu season as any virus will likely have an impact on your daughters blood sugar.  My son has had two colds in the past 6 weeks and each time he ends up with high blood sugars.  However, the most dangerous is the stomach flu or the flu so at least make sure your daughter gets a flu shot.  Since my son also has asthma, he has taken a flu shot every year since he was a baby and this has helped a lot as he either never gets the flu and if he did, it last two days and is so mild we are not even aware it is the flu.

I understand about unstable blood sugar as we have this with my son.  He literally eats the same food everyday and the same level of activity and his blood sugars are rarely consistant.  My dad always says don't fret because that is the nature of being a diabetic.  

My son also has ADHD and Aspergers and I have other health issues so this makes it tough but we move forward as moms are superheroes!!!!  I wake up almost every other night at 3a.m. to check my sons blood sugar if at midnite when I check him his sugars are heading down but I don't want to feed him if he does not need it so I set my alarm for 3am and recheck and usually he is stable and does not require any carbs.

Do you have any other children?  Do you work?  Do you have any support groups in your area?  Sadly, my biggest supporter was my mom as she also had a child with diabetes (my brother and a husband -my dad- so she really understood the disease but sadly she passed away last December :-( so it is hard not having her around.  

I hope things go smoother for you and just know you are doing the best you can.  This is a treatable but tiring disease that is 24/7 so parents especially can feel overwhelmed and stressed.  

Please feel free to vent ANYTIME...someone is always here to read your comments and reply.

Be well,

Jodi

Depend on your definition of easier.  =)

No diabetic I've ever heard of has perfect blood sugars all the time.  The variables are always changing.  It doesn't mean you're failing.  Highs and lows happen, but over time you usually can understand what caused them and have fewer.  With shots is especially hard because multiple injections don't match what your body actually needs.  It's better with insulin pumps, but never perfect.  

Over time you will learn not to stress over highs and lows so much.  Just treat them and go on.  And just because your daughter had diabetes doesn't mean she'll want to eat healthy or not mind testing and taking shots.  She's still a normal person.  Do you dose your daughter's insulin to the carbs she eats?  If not, ask your doctor about doing this so you can have some flexibiity.  And though you're supposed to give insulin before a meal, in real life I find it easier to dose after eating, especially with a child so you know how much is consumed.  

I would not have chosen diabetes for myself, but I also see it as a blessing in disguise.  It brings a compassion and a strenght of character to anyone who lives with it day in and day out.  It will make your daughter into a person able to solve problems quickly and creatively.  It's never fun, but it will create some downright comical moments (I'm sure you already have a few from trying to get a toddler to give a urine sample).

I was diagnosed at age 4 and am now almost 40.  I'm a wife, a mom, an employee, and a friend.  I have a busy and truly blessed life.  Your daughter will be okay and she will build a good life too.  It's going to be okay.  

Susan thanks for your words of encouragement.  I know that we have learned a lot and come a long way.  Where you home with your daughter when she started on the pump?  Emma's Dr's are talking about starting it summer before kindergarten, which is this comming summer.  That will mean she is in school during the day and we'll be relaying on the school nurse and a 5 year old.  Scares me a little.  She is in daycrae all day right now and they do not have a nurse on staff so although they are wonderful and they check her sugar several times a day, I do not see them managing her pump.  

Thanks Jodi.  You certainly have your hands full, and I am so sorry you lost your mom.  My mother and sisters are very supportive, but Emma is the first on my side of the family so it is new to us.  My husband is the youngest of 13 and his grandfather had T1, he passed away when my husband was young.  His brother is a T1 who was diagnosed at 21 and he is another story all together.  There are others in his family with T1 but they are not a close family so there is not much by way of support or guidance there.  

I do have another daughter, she's 2.  And yes, I do work full time.  I have done a few things with the local JDRF chapter, its just hard to get a sitter sometimes and get out.  

It is nice to be able to talk to other moms who do this everyday.

Jenna thanks so much!  My daughter is actually on Novolog, NPH and Levemir (fast, medium and slow acting).  She gets NPH in the morning to cover her through the day becuase she goes to daycare all day.  When we first came home, she was dosing on an insulin to carb ratio, now she is on a sliding scale for her novolog as well, which more and more i am wondering if thats best.  And we do actually give it at the end of her meal so that we can make sure she gets in all the carbs, she can be quite the picky eater sometimes.  

When I took her to daycare this morning they had a chart hanging on the wall, they had asked each of the children what they wanted to be when they grow up, my daughter said 'A doctor, so I can fix people when they are sick", and who knows maybe she will, she already knows what it is to be cared for by so many .

And you are so right with the stories.  Recently we had our first battle with positive keytones in the urine (since her onset of course), and I had to check everytime she urinated.  My family was rotating staying home with her and my mom was home one morning and she wouldn't go to the bathroom unless my mother collected a urine sample, because "mommy has to check it".

Hi Kelly

the first few months were also awful, awful, awful, awful for us. Our son was 7 at the time and it felt like the world was ending. We couldn't conceive of living with the stress and anxiety, and couldn't bear the thought that *he* would have to deal with it his whole life. Now about 2 and a half years later it's mostly the new normal. Which is not to say that we aren't sometimes struck anew with the horror of 'betes (his name for it - he hates hearing the whole word), or that many nights aren't filled with stress. The pump was definitely a big part of the improvement. It gave him back a lot of the freedom he had lost. Handling it at school is not that hard if you have a competent nurse. He even has playdates at other people's houses. Originally what we would do is have them call and we would walk them through the whole procedure - telling them what buttons to push, etc.... (it was made possible by the fact that he has always been willing to test himself). I don't know what it's like to have such a young kid with it, but by the time they are 7 or 8 they will be partners in taking care of themselves, which can be a huge help. Now we just do it with him on the phone. Definitely the hardest thing about the pump is calibrating it in the beginning, but now having gotten used to it I can't imagine going back. NPH in particular was a big problem. I remember walking up to his school every hour to test him at afterschool when he was on NPH, and having him go from 180 to 59 between tests!

The other thing I would say is that it really helps if you can find some other parents of kids with Type I, particularly if the kids are around your daughter's age. They are the only people who can really get what it's like to have a kid with it - the constant pressure, stress and massive responsibility.

Good luck and take care, and definitely don't worry about venting! We all know exactly what you are feeling.

Bruce

Kelly,

Kelly, when Anna Claire was first diagnosed, she had just finished three year preschool. She started pre k that next Aug. it was only 8-12 M-F. She went through Kindergarten on injections. We got her pump the summer between K and 1st grade. It was a good time for us to train a d get used to the pump before school started back. She was on the Omipod for three years and recently started using the Medtronic Revel. I would recommend either of these. They are both great pumps. We liked the Omnipod for her being only 5 yrs old. It was nice not to have a pump with tubing and such for an active little girl. Hope this helps!! Have a great day!!

Hi Susan,

I was just wondering although your daughter was on Omnipod and you liked it, you still switched to Medtronics.  I use Medtronics Veo pump (that is the Canadian version of the Revel) but I am looking at a pump for my son.  While I like the idea of no tubes, I have read complaints on its reliability.  Can you give me any feedback?  If you liked the Omnipod why did you switch (if you don't mindmy asking).  My son is ten now and can be wild at times and he is open to the idea of a pump.  It is funny but I think in the case of the pump, it is easier to but a young child on the pump as the will get used to it and not remember life without a pump yet an older child sometimes is more reluctant to change as they have more awareness.  Glad your daughter is doing well.

Take care,

Jodi

Jodi, we liked the Omnipod, but yes, it does have its issues with reliability. They malfunction sometimes. When that happens, depending on when, you lose the insulin, plus having to take the time to set ip a new one. It really wasn’t too bad though, and they replace the defective ones. We switched to the Medtronic because of the integrated CGM and the My Sentry, which displays all of her values on a bedside monitor, and alarms when she is trending hi or low. It has given us peace of mind. It was difficult for her to get used to tubing, and how to wear it so that its"hidden" . She was so used to the pod being pretty much hidden under clothing. She’s just funny about that. We love the Medtronic pump and go through many many fewer site changes. I have honestly only seen her lose a site once or twice and that was from swimming for extended periods. Also, it is nice to suspend it when needed too. Hope this helps!!!

Bruce,

What kind of pump is your son on?  I have been starting to research the different options and looking for feedback on them to have some basis when we really start going over it with her physicians.  The one they initially sent us home with, just to see and touch and play with, was the Omnipod.  

Hi Kelly

we use a medtronics minimed. At the time that we started our DNE had stopped recommending the omnipod because of reliability issues. That said, the first couple of months were a real struggle for us. In retrospect it was probably due to the fact that our son is very lean and athletic. The infusion sets we started with would fail randomly sometime within a day of changing them. We would test him before bed and he would be 400 and we would have to change him and hope the new set worked. We finally settled on the SureT, which is the set in which the needle stays in his body. That works *much* better, and is reliable for at least 36 hours, but frequently will lose effectiveness after that, although sometimes we can go to 2.5 days. Not sure why it starts to fail as others don't have that experience and can use them for 3 days, but with us it's completely clear that the set is not as effective. After we change him he will come right down.

If you do start on a pump the thing that is absolutely critical is getting the basals right. Until they are correct it's really hard to get any of the other settings right. You can set the basals if you can get your daughter to avoid carbs for some hours (hard to do), or by observing patterns over a number of days. If she is high every day at the same time for several days it's likely her basal is too high etc....

The tubes on the medtronic are a bit of a pain, and we have had knots in them that forced us to change him, but the omnipod with its one remote seemed too precarious to us and too much responsibility to put on him not to lose it at school. If they gave you two or three we might have considered it. It's also nice to be able to take off, which we do during soccer games and such. There is a new pump that just came out that looks a lot like an iphone, and I'm hoping it will drive medtronic to make their pump smaller, as it's pretty bulky for a kid to cart around. But it sure beats shots, and the anxiety that NPH always gave us.

Good luck and feel free to keep posting questions if you have them.

take care,

Bruce

kelly, in a word, No. It never seems to get easier. i've had T1D for 30 years and my daughter was dx 2 days before her 7th birthday. "Being diabetic for so long should have made things easier" is what a lot of family and friends have said to us. I say, WRONG! All it helped with was that we were already versed on the whole carb-insulin-sensitivity thing. I have an insulin pump and it has been a life saver for me. My daughter who is now 9, thinks she can control hers without one. I have no problem with that but, I will lobby for one if her A1c's start getting out-of-hand.

There are many arguments about meals, snack, & dinner partys at my house. And it is becoming more routine to check bg's count carbs, & eat within the 40 min time frame but, unexplained highs and lows are all a part of T1D. Don't stress about it too much, you'll drive yourself crazy, When my daughter thinks no one is watching she sneaks snacks and of course her BG's show it. We have had many conversations with her about these things but nothing seems to help. All we can do is correct her BG anhd hope and pray she doen't sneak something between meals.

With that being said, be very careful accusing any diabetic of sneaking when an unexpected high happens with out proof. Accusations do nothing to help. All they do is add to the problem. I know this because my parents did it to me and I cheated on a regular basis. I figured "well, no one believes me, why try" which of course made things really bad for me in the end. T1D managment never ends, its 24-7, it will wear a person out and if a diabetic doesnt feel that they are being supported, well, bad things can happen.

Maybe I didnt help, maybe I did, I do not know. Just wanted to pass along a little advice. Good luck to you, and good health to your daughter.

kelly, in a word, No. It never seems to get easier. i've had T1D for 30 years and my daughter was dx 2 days before her 7th birthday. "Being diabetic for so long should have made things easier" is what a lot of family and friends have said to us. I say, WRONG! All it helped with was that we were already versed on the whole carb-insulin-sensitivity thing. I have an insulin pump and it has been a life saver for me. My daughter who is now 9, thinks she can control hers without one. I have no problem with that but, I will lobby for one if her A1c's start getting out-of-hand.

There are many arguments about meals, snack, & dinner partys at my house. And it is becoming more routine to check bg's count carbs, & eat within the 40 min time frame but, unexplained highs and lows are all a part of T1D. Don't stress about it too much, you'll drive yourself crazy, When my daughter thinks no one is watching she sneaks snacks and of course her BG's show it. We have had many conversations with her about these things but nothing seems to help. All we can do is correct her BG anhd hope and pray she doen't sneak something between meals.

With that being said, be very careful accusing any diabetic of sneaking when an unexpected high happens with out proof. Accusations do nothing to help. All they do is add to the problem. I know this because my parents did it to me and I cheated on a regular basis. I figured "well, no one believes me, why try" which of course made things really bad for me in the end. T1D managment never ends, its 24-7, it will wear a person out and if a diabetic doesnt feel that they are being supported, well, bad things can happen.

Maybe I didnt help, maybe I did, I do not know. Just wanted to pass along a little advice. Good luck to you, and good health to your daughter.

I just wanted to add in on the pump questions.  My 4yr old has been pumping with omnipod for about 5 months now, so we are still relatively new to pumping.  In that time, we have had no issues with the pods.  We have only lost one pod early and thats because she was wearing it on her arm and got it caught on the chain of the swing of the playground when she was jumping off.  Since then we bought "bands for life" for when its on her arm and we've had no further issues.  We had 2 pods fail during the priming process, but thats before they are put on so no extra pokes happened, and omnipod replaced both of them. I draw the insulin back out of these, so we haven't lost any. (But if you do, omnipod has a lost insulin program where they will reimburse you for your cost) We always get the full 3 days out of them and sometimes I wish we could not change and keep going.  I love the tubless and waterproof.  I like that she is not missing any basal when we go swimming b/c there is no disconnecting.  I know animas has a waterproof pump, not sure about medtronic but we do a lot of boating and skiing so even if it was waterproof I would still be disconnecting b/c if it fell off its still a $7000+ piece of equiptment at the bottom of a lake.  If the pod comes off (which it hasn't yet) its not a big deal. I am very happy with our choice, but its certainly a personal one.  I would reccommend omnipod. (FYI Jodi, we are also in Canada)

Kelly I understand what it is like.  I can't imagine how it must be with one that little.  My son was almost 6 1/2 when he was dx.  But it was the first time he had ever been in the hospital so it was quite traumatic.  And over the years I've just decided that his #'s will never be perfect and all we can do is try to deal with the lows and highs as they come.  And it is perfectly ok to vent.  And it is a blessing to have other moms that are going through the same things.  Just 3 weeks ago my son finally got put on the pump and it has made it so much easier for us to not have all the shots to do. But now we have another issue ahead of us trying to keep his sites sticking for more than a day.  But if you ever need anyone to chat with I will be glad to be your understanding ear.

Jodi my son also has asthma and we get the flu shot every year.  And although he really dreads it it is nice not having the flu for a week.  And he also has allergies. And I know how it is to get up everynight at midnite and 3 am just to make sure he isn't having a low.  But it does help me to sleep better knowing where his numbers are at.  I've actually caught a lot of lows during the night that I wouldn't have had I not got up and checked.  He recently got on the pump and we haven't had too many lows during the night but I still do bs during the night just to make sure.

Bruce my son recently got the Medtronic Paradigm and he uses the QuickSet sites.  Some of them stick for 3 days and others don't.  He is very active.  Was wondering what other sets you used and if you tried any of the kind of tapes they have to use with the sets? My son plays baseball in the spring and summer and I don't want to have to worry about it coming off on the field.  And I have to agree it sure does beat doing the shots.  My son would not have a snack just so he wouldn't have  to have a shot and he absolutely hated to have his Lantus.