Numbers ALL over - on going 3 month nightmare

Type 1 and LADA Parents of Children with Type 1 Diabetes
1

my son is three and was diagnosed almost a year ago

his numbers were level and he had a great A1c when i was at home caring for him (for about 8 months)

then i went back to work and he went into daycare and the nightmare began

and it literally has been a nightmare

he has either ran high for weeks or severe lows

he is so unpredictable

no one is sleeping

we check him twice through the night

and his team and i are trying EVERYTHING and nothing is settling the numbers

every time we slowly make a change one way he shoots the opposite (either high or low)

and its really been out of control

to the point where i feel damage must be happening to him

we're making another change tomorrow

but basically i am SO tired of everything

he gets his pump in march and i just think - if he has been like this the past three months what will he be like switching to the pump

i am worried

and am contemplating going part time but feel unsure if its necessart

i could but i don't know

i would need to make the decision soon though in order to put the request in at work

i just wonder if other people out there have had this much trouble and what they tried as far as solutions

or maybe there are things i haven't thought to look at yet

2

Hi there Matilda, my son is 7 and he was diagnosed a year ago tomorrow! The first 8 months, we had great control, the last 4 months have been crazy, rarely in target. He is either high or low, yesterday, we had 4 lows. Last night I treated a low at midnight and again at 3 am. I feel like I have no control at this point and I’m a stay at home mom. Like you, we’ve tried lots of different things, from insulin increases and decreases to carb increases and decreases, feeding activity; but still it has its own mind. I’m thinking that my son’s honeymoon phase is over and that is why it’s been so crazy. Hang in there, I believe it will get better. I’ve had every emotion in the book, cannot believe it’s been a year, feel like I’ve aged 10 years! We have our next checkup just before the holidays and I hope we can discuss pumping at that appointment. We did have a day this week where he was in target all day, it was a wonderful day :slight_smile: I don’t know if you’ve read Think Like a Pancreas by Dr. Gary Scheiner but it is a great book! I’m on Facebook, Maureen Israel and I get great support on there from my tu friends! Take care.

3

Congratulations on 1 year, ours was today. Very emotional time of reflection, but glad we made it and relieved at how far we have come!

4

Matilda. I am sorry for the frustration! Unfortunately sometimes the numbers just don’t make sense. If you weren’t switching to the pump i would probably suggest trying a different insulin. My 7 y/o used to have really unpredictable numbers, and i was afraid to try anything new because anytime we made an adjustment it was scary and out of control, and would take up to a month to settle down. Finally we switched her basal and that made all the difference in the world. I am not sure that you quitting work would get you any better numbers. When our children are little sometimes the numbers are just everywhere, and it isn’t because you did anything wrong or should do anything different. I know that it is scary and frustrating, and there are times when i just want to run away for a weekend and forget, but i know that won’t work, because right now my girls need me more than i need a mental break-down! Just try not to beat yourself up about it, keep working with your doctors and i am sure that things will get better.

5

Congratulations on your one-year anniversary too! It is indeed a very emotional time, I’ve been pretty emotional for the last couple of months, thought I had dealt with everything and then whammo it hit me again! I guess it’s like a grieving process, there is no time or rhythm to it. I’m taking my family out for supper tomorrow night to celebrate the anniversary of my son’s life being saved:) I want to put a positive spin on what was the worst day of our lives, yet life-saving at the same time. Thought about having a party, but my husband had an emergency appendectomy on Saturday afternoon, so a party is out of the question, I guess there is always next year…are you pumping? We are not but I hope to do it soon. Once again, happy anniversary :slight_smile:

6

Have you discussed this with the daycare center? Are all the employees that deal with your child educated about type 1 diabetes? You would be surprised the misinformation people have. My daughter was diagnosed 3 years ago, and my step-father still thinks she should be able to eat a pretzel rod with no problem. Exercise also effects BGs very much. If they’re going out to play on the nice days and staying in doing crafts on the rainy/cold ones, that will make his BG go all over the place.

This is what I think you should do. See if you can take a few days off of work, and go into that daycare center and watch what goes on there. You may find out what’s causing his problems. They shouldn’t object. If they do then you need to find another place for your child to go.

Good luck, and sorry I couldn’t be more help!

7

i thought we were good too, but there have been a few more tears than i expected. it dredged up a lot of painful memories since my daughters dx was so traumatic (we actually now have 2 with D, our oldest was dx’d last month, but her transition has been very smooth). We did have a little party for her today, and talked a lot about what happened last year and how our lives have changed. i was suprised by how much going through the holiday routine triggered memoried from last year, i would be prepping a dish and then find my self burst into tears. and when i pulled out our thanksgiving recipes i found my daughters room and telephone number at the hospital tucked in amongst everything. that took my breath away. Sorry to hear about your husband! i am sending prayers your way!

8

If you can work part time, I would do so. If it’s not possible, financially, or for some other reason, then you will have to work more closely with your day care provider or even get another. If you have a child care provider that only works for you, you can monitor closely via phone. Blood sugar checks, questions re adjustments, increases or decreases in temp basals (this can be done once you get the pump, you will love it), so much of this can be done with frequent checks via the phone. So you have options there. We adjusted our work situation (and glad it was possible) so one of us can always be home with her. I’m not sure about the younger ages (she was dx’d at 8) but I think we had one good year, after we thought we got things figured out, then pre-puberty, puberty and early teen years. Yes, it is a roller-coaster where BS is tweaked at some point in her basal patterns every two days, with extreme adjustments evenings and sometimes overnights. For us, the days are more stable. The pump is going to help immensely in dealing with the many adjustments needed so I would not worry too much about getting the pump. I am thinking ahead to your son’s early school years which are coming up and if I were you, I would either want a one-on-one caretaker for him or a parent. There are so many after school sports issues, play dates, you may have to come to school to get him some times, etc. Things will get easier, not because diabetes gets easier, just because you will become so experienced in recognizing your son’s patterns, how he responds to certain foods, and when the patterns change again, as they will because he is a growing child, your daily observation and instinct, at times, will help you. You will know more then than the endo how better to adjust and treat your child. Just takes time.

9

I think Monica gives very good advice. Just spending a few days at the daycare observing might help give you some insights into what’s going on. If the numbers are good while you’re there, then they are either not doing something correctly when you’re not there, or your child is under stress when you’re away, causing the fluctuations. If the numbers are bad, hopefully you can pinpoint what, exactly, is causing them. Maybe they’re not actually recording every little thing he eats/drinks. Do they realize that milk also has carbs?

I will say that my daughter, who’s 2 and diagnosed at 8 mos, goes through the exact same things. When my husband has her over the summer (he’s a teacher), her numbers are much more consistent. When she’s with our parents during the school year, she’s all over the board. But, we’ve also found that even when she’s home with us 24/7 for the entire weekend or a holiday, she can still fluctuate like crazy. We had several lows and extreme highs over the Thanksgiving break with nothing really differing from one day to the next. It’s extremely frustrating to say the least. We’re looking forward to the pump in the spring to see if that helps.

One other bit of advice I can offer: If you’re not doing it already, take good notes on what he’s actually eating and when. Foods high in fat will keep the blood sugar up much longer than just a pure sugar such as juice or fruit snacks. We’ve learned that she needs to have a high-fat carb (ice cream, peanut butter) before she goes to bed in order to keep her sugar up through the night. We’ve also learned that certain foods like pizza, potatoes, and other very starchy foods will mess with the sugar levels and cause extreme lows and highs at very odd times. Having a food diary may help understand those numbers a little better. We’ve started using an app on the iPod Touch that keeps track of carbs, sugars, what foods (high fat, low-fat), time of shot, activity, naps, etc. We’re hoping to get some insight with this. We also had to move the Lantus to the morning to get rid of the nighttime lows.

I hope this helps. I know how frustrating it can be, worrying what the numbers are doing long-term to your child. Hang in there and let us know how it goes!

10

I wish I had the enegy to read what everyone else wrote but I just thought I would let you know what is happening to us. Same. No sleep.

My son was 3 when diagnosed Oct14/2009. Numbers were great in the beginning but 6 months in they went crazy. Turned out the top of his leg couldn't handle any more needles. We switched to sites he would never let us use and he went back to normal. Another few months went by and his numbers went crazy again. He has a huge Dawn Phenomenon and was going low in the middle of the night. The hospital was complaining that the morning bolus of short acting insulin was so large in comparison to the long acting insulin so they switched things around. It made things worse. We now realize Payton is extremely insulin resistant in the morning and I was right to jack up the fast acting insulin.

The hospital said we were supposed to move to 3 needles a day for more control over his numbers in the morning (Dawn Phenomenon) but instead we started the pump Aug 24/2010.

Things were great for the first couple of days, even the first month because you were expecting to lose sleep while they had you poke your son at 3am in order to calibrate the pump. We actually never used the Animas Inset 30s like the hospital recommended because the inserter is so forceful and I am freaked out about it so I ordered the Orbit Micros right away.

What I found out about those is that he goes really low the first day and then high the second day. I thought I could see a pattern but this is the 4th month and several times I have had to poke him every hour throughout the night to either give him apple juice or to correct and test Ketons. We gave up on the Orbit micros, especially since I think Health Canada is going to recommend they be discontinued due to their week tubing. Not to mention the tubing came off the cartridge 2x causing him to be almost as high as 1st diagnosis by the time I discovered it.

So, we switch to the Animas 90 teflon and things are great the first 5 or so infusion sets. Everything is different with it. My basals need to be increased, my boluses need to be decreased. Its phenomenal what a difference a set can make. So I am poking Payton 13 times a day. I wish there was a CGM in Canada that Payton could wear with the Animas ping.

On the bright side. We went to disney land after only 2 months on the pump and couldn't live without it. I am tired, pulling my hair out, and just plain confused but I am well aware the learning curve can be like this. The hospital would not take the numbers I faxed in for sick days or holidays (which adds up to a whole month) so the learning curve is lasting a little longer than 3 months for us.

One little small change with the numbers and he is either super low or super high. I can't seem to find that middle range. He is extremely sensitive to insulin changes. I think 4 year olds are super active as well making the insulin work harder than your books say it will.

Needles are a lot easier insulin wise but harder meal wise. Pumps are a lot harder insulin wise but a lot easier meal wise. Take your pick. I would rather do the leg work for my son with calculating the insulin changes so he can have it easier with the meals.

I will never go back to needles. Even if it is discovered that I have to change his infusion set every single day to see a pattern I will do that just so he can eat what he wants, when he wants it. I have seen a new happy little boy since we started the pump and not just because meals are easier. It took 2 weeks of solid good numbers all in a row for the exuberant Payton to pop out. I used to think his moodiness was just his personality. I think everyone who can handle the stress of learning an intricate device with several manipulating variables should try the pump. Too bad it is sooooo hard on the parents for several months. I can't wait until I am an expert at it.

Check out Quercetin a natural product for protecting his body from the sugar!!!!

Hope things get easier for you. At least you can correct right away with the pump when you get it. My thought to give to all the parents going through these confusing times is know that one day you will become very proficient at this.

P.s. Being on the pump, I no longer have to feed my kid a peanut butter sandwich at night. Yippee.

11

I wish I had the solve all cure all advice here but I don’t… my son is 4yrs old daignosed at 12 months. he was pumping by 18months… while on MDI his numbers were completely uncontrollable his diet was non-existant because at 13 or 14 months old he realized he gets poked less if he doens’t eat… a little bit of fighting with the insurance company and a change of D management team and we were able to get him on the pump at 18 months… he has yet to be in a day care or preschool setting although he starts kindergarden next year and frankly Im terrified!!! but what I can say is when we do have to put him in the care of others I tend to call on other D moms that live in my area first, if they are not available to watch him then we go to a long time friend who gets it… but never daycare… I would agree with something one of the other moms said… go to the daycare and watch them… see for yourself how they manage bgs… do they give him the injection for everything he eats?? Are they legally even allowed to give injections??? I know most in our area are not!! I work full time but we have the luxury of having my husband stay at home so I know I don’t know first hand what you are going through… but I could imagine… Id also look into a 504plan if the preschool or daycare gets ANYTYPE of federal funding AT ALL then they are required by law to provide you with the option of a 504 which will dictate exactly how your child’s care should be done. I would also suggest looking into the animas ping… its a pump that has the smallest basal rates available until early 2011 when the medtronic comes out with their new pump who’s basals I believe will be the same… but with younger kids their needs are often much smaller than older kids so having the option for smaller basals is a great thing, plus while trying to figure out basals you can change them by 0.005unit increments (I think its that low can’t remember at the moment basals have been good here for a while now lol) which obviously is muchmuch smaller than the changes that can be made with a syringe… but all in all Im thinking that the change to the pump will probably be a good thing for you and your son… especially when you consider that you can bolus 1.05 units or 1.25 or 1.60… thats really really hard to do with a syringe… I think having those better dosage measurements will probably give you guys much better control… Im on facebook if you’d like to chat more or have any other questions… facebook.com/egillespie2

12

Pizza is trouble. Now that we just moved to the pump we have limited pizza greatly because we found with Payton his numbers climb at hour #5 after eating it.... even after using a combo bolus that drips into him for 1.5 hours. Haven't perfected the combo boluses yet but the pump gives so much freedom once you make little rules for everything. I am currently making a rule for pizza, I have a rule for taking a bath, a rule for exercise, and for playschool. Oh, and I must mention that before getting that HIGH at hour #5 with pizza, he goes low because there are hardly any carbs to match the insulin at hour # 1,2,3,4.

Also note adrenaline will cause the liver to dump sugar into the blood. So if at playschool for whatever reason adrenaline goes into the blood..... fighting with another child, competitive game etc, then he will go high and it was no one's fault. The pump will help with correcting this on the fly.

I read "Thinking like a Pancreas" before I got the pump and I must say I was a bit overwhelmed with how many variables the pump had. I am on month 4 and I am getting quite impressed with myself, especially this morning when I changed his ISF (Insulin Sensitivity Factor) myself. Payton was 9.8 this morning which is great but he will eat soon so I wanted to lower his blood to get ready for breakfast in an hour. SO!! 9.8 - 6 (target blood) =3.8

Take 3.8 and divide by ISF (18) and you are supposed to give him 0.20 units of insulin, so we did. By the time he ate he was 5.8. Can you believe how awesome the pump is? Matilda you are going to love the pump.

The pump might be hard to calibrate to your son's body. You may have to fax in numbers to the hospital 2x a week. It takes me at least an hour to do the hospital homework. If you could lighten your work load for a few months while transitioning to the pump I would. Can you go part time for a few months and then go back full time when the pump is stable?

I am not yet at a place where I can trust someone else to take care of Payton. I am burnt out. I sit outside his playschool the whole time. I am frightened of Kindergarten next year. I commend you on being able to "let go". I will attempt to do that too.


13

I have the Animas Ping. We need those small increments because Payton is SOOO sensitive to the smallest amount of insulin. For awhile on needles he would be super high or super low. Now I can make tiny changes. I love the pump. Above that, I love the remote because I don't have to dig into his spibelt every second to give him a bolus.

I just wish that it had a CGM with it. I poke Payton 13 times a day. He has no problems with it and he says it doesn't hurt at all. He doesn't even hide his hands at night like some kids do. I don't know how this is possible because when I poke my finger it hurts for 3 hours. I can't wait until his pump is set up, then I won't have to be my own CGM.

I recommend the ping for any 0-6 year old.

14

hi Matilda, My daughter is 17 now, she was diagnosed when she was 18 months old. I have been where you are and I don’t like it any more than you do. I ended up staying at home to look after her. I tried working when she was little but after one too many times her ending up in the hospital, we decided I would stay home. I know it is a hard decision for you to make. I ended up writing it all down on paper and the pros outweighed the cons. Congrats on the one year mark. We celebrated her 15 yr mark this year.

15

Miranda has been pumping for about 4 months and she still runs high. When we were doing MDI with each test I would have a very good idea what the meter was going to show but now it’s a total crapshoot and very frustrating!! So much so I’m thinking of going to the un-tethered method and having that Lantus as her safety net. The pump is great for bolusing and the remote use is really handy in everyday life but getting the basal right is really hard. I hate not being in control of her numbers…

16

Having been through T1D with a toddler, I will tell you that my experience is that until our son hit about 7, his numbers were simply volatile. I liken this to something similar to puberty. This is a very high growth time for children and their hormones go crazy. We would have total roller coasters of a few months of great numbers and then months of craziness. I did find (after the fact, of course) that usually after the crazy period, he had grown. So, I blame a lot on the growth hormone activity for my son.

Couple this with the fact that very young children can have periods of extreme activity and are not always able to verbalize how they feel, you are walking through a mine field! I will tell you that the last couple of years have been noticeably easier for us, now that our son is older. Of course, YDMV, but this was our experience.

I would agree with previous posts about needing very small insulin increments. We were on MDI through all of those years and the difference of .5 units could mean a swing of more than 100 points. Frustrating! He could also drop 200 points in an hour, and did so regularly.

Hang in there, it will get better. I do think that as your child gets older, you will find his T1D management easier for lots of reasons.

17

Have you tried extending your pizza bolus even further? This has been a moving target for us, but we are closing in on it. Right now we do an extended bolus with 50% up front and the rest delivered over 3.5 hours. If he goes low in hours 1-4 you might even try something more dramatic, like 20 or 30% up front and the rest over 5 hours.

Good luck!

18

There are a lot of posts here so someone may have already suggested a continuous glucose monitor. Even if you do not want to purchase one I know of one family that was having number problems and the endo suggested a temporary one that you only wear for a week or two to find out what is going on. I am not sure of the name of it I don’t think that it was dexcom or minimed. My son has a dexcom and he doesn’t wear it all the time, but we put it on him for a week or so at a time when his numbers are all over and it “usually” helps me adjust his pump. He requires a lot more insulin at school than at home, stress I guess or maybe less activity. I have also noticed he seems to go in cycles he runs high I adjust, then low I adjust, eventually I usually end up where we started with his basal and bolus. Blessings!