Normal Blood Sugars... Why So Sad?

My 6-year-old was diagnosed  on January 20th.  I guess that means today marks three months.  Lately he's been going low, particularly before lunch.  We kept cutting the ratio to give less insulin, but he was still going low.  Then this weekend we started no insulin after breakfast... still going into the 50's.

Talked to the endo nurse today, and she said that this could be related to his honeymoon.  She suggested taking him off insulin entirely to see how he does.  We talked about whether he could potentially have monogenic diabetes, not type 1.  Anyway, we're trying a week off insulin (unless BG starts to spike).

I should be happy, right?  For some reason I feel this knot in my stomach about it.  Maybe I felt we adjusted, and now I'm concerned that there are more unknowns in the picture.  I don't know.  God knows that I wouldn't be feeling uneasy if I thought that this was the beginning of life without diabetes.

So many questions... is it possible he doesn't have diabetes?  Does he have one of the more rare types that isn't type 1 or 2? Am I scared to let us feel "normal" lest the world come crashing down on us when the honeymoon ends?  He had cookies a half hour ago, and his BG is now 157.  That's good, right?  Maybe I'm just scared to let my guard down.   I'm sure some of you have been through this before.  Any thoughts?

Ann... i have high hopes for you.. you seem like a good person.. remember that everything happens for a reason... if nothng happened after those cookies then there is a possiblility hes not a diabetic.. but im not a doctor.. haaha... good luck

i wouldn't worry if he's honeymooning and doesn't need insulin, it's pretty common and just means you get to put off giving him shots! everyone goes through a honeymoon stage, though the length varies from person to person.

It's interesting to hear the he's having a significant honeymoon, even though he's young.  I was diagnosed a month before my 5th birthday and my honeymoon, if I had one, was practically nonexistent.  I've heard it's more common to have a prolonged, more obvious honeymoon if you are diagnosed at an older age (I guess upwards of 13 or so). 

It makes sense to me why you don't want to get his hopes up about not having to take shots, count carbs, etc. only to have to start the routine all over again.  I think it's important to let him know that this is only temporary and that he will most likely have to take shots again, although also enjoy the honeymoon while it's there!  Good luck with everything!

Well... so much for no insulin.  Went to 271 today, so I guess we're back onthe roller coaster.

Thanks for all the comments.  It helps me to understand the "normal" if there is one.

Hopefully, hs honeymoon will let you have an easier time managing his BG's even if he does have to take insulin? I'm sure at each new "stage" after the diagnosis, it feels hard and there are issues to work through!

Hi, I'm new here - just joined tonight.  I just wanted to let you know that my son is in a similar situation.  He was also diagnosed about 3 months ago.  He goes low (between 55-65) pretty consistently between 11am-12pm.  He takes no insulin at all with breakfast, because it just exacerbates the low, and he often needs a snack around 11am to avoid having a low while at pre-school - after which he still goes low at lunchtime.  I came here hoping for further information on the issue, too!

 

I was diagnosed when I was almost 6 and I'm now 23. I don't remember having much of a honeymoon, but I also wouldn't really know since my parents were doing all the work at that point. When I was younger and taking shots, I had to have a snack around mid-morning or else I would go low. My school had a snack time already, so my teachers were awesome about working with my schedule. I realize that I was very lucky to have such a good experience because I have read about the struggles some parents have with schools that are just terrible.

It's tricky because you want to avoid a high after breakfast, but not have that low either. Pumps can help a lot with this because you could change his basal rate to accommodate the low. Working with a dietitian may help too, help find foods that last longer to help keep him steady and he will actually eat.

As I got older, that morning low eventually stopped happening. Keep working at it, it sounds like you are doing all the right things. :)

Best of luck!!!

I was diagnosed in December, so I am coming up on 6 months and I have not been taking any insulin for 2 months now.  I have an occasional inexplicable spike to the 200's or sometimes even the 300's, but overall I stay in the 70-110 range, and I have tried taking insulin but it always drops me low very fast.  The "maybe I'm not diabetic" thoughts have gone through my head too, but I've been assured I am.  This disease is just very different for every person and you just have to do what seems right for you...

I believe it's a rollercoaster ride for everyone but there are a wide range of tracks.  My son was off insulin for only a day, and then we started spiking again... One day I got a call from the nurse because his BG was 462.  I told her to retest, and it was still 450!!!!  Thankfully, negative for ketones and the correction kicked in fast.  The day before, I got a call that he was in the 50's.  Who knows....  Not only is everyone different, but it seems each day is different.  The good news is, I've figured out I'm not going to "break" my son.  We monitor and treat.

It's good to know that we are not alone.  My husband has been T1 since a teenager, and he was really worried about the lows, which he never personally experienced, even early on - and of course this worried me!  My son's preschool has no nurse and no prior experience with diabetics - everyone, especially his teachers, were all very concerned about how to handle the situation.  However, they have really stepped up to the plate for us and are doing a great job.  We feel quite lucky.

All of this does make me wonder, though - how long can honeymoon periods last?  We are rooting for a long one! :)

Thanks, Megan519!  We were doing pretty well in the mornings with cheese toast, but he got sick of it.  I just do the best I can to try to slow things down with more complex carbs and maybe a little sausage or something, but some days are still better than others.

ps.  We think he'd fiddle with the pump and/or CGM right now, so we are waiting, but I am looking forward to being able to transition over.

Hey! I have been diabetic for 10 years and I was diagnosed when I was 11...I know several years older than your son. One thing that you have to remember is that there really is no normal, there will always be good days and bad days, but it will be okay. The beginning is hard but it does get easier. This is not the end of the world just keep your head up and understand that you, your son, and your family will figure things out just be patient and stay calm. :)

With Riley's honeymoon if you can call it that she just needed less insulin. For about maybe two weeks. We slowly knocked it back then bam she needed more. I was bummed and wanted a good long insulin free period for her. Just so she could have that gift.

Sorry so late in responding to this , just joined this group. ......  I have 2 children with type 1 diabetes - having been diagnosed 2 years almost to the day from each other.  We have been dealing with this desease for over 4 years now. 

Both of my kiddos had about a 1 year honeymoon.  It started quickly with needing very little to no insulin about 6 weeks into the onset of their first dose of insulin.   But the honeymoon ending was very gradual.  They just started gradually needing increases slowly over time.  I found it very frustrating and just wanted the honeymoon to end so we could get on with things.

I remember feeling just like you - hoping that maybe they didn't really have type 1.  But unfortunately they do.  This feeling is apparenly VERY normal during the honeymoon phase.  But the honeymoon is a pain because they still have to test and you have to make constant changes to ratios. 

I hope things get better for you soon.   Maybe soon your child can go on the pump - we find it much easier.