I think the honeymoon is ending

[Tamara Gamble]

Hi guys, It's four in the morning and I'm here posting. I had one of those feelings. You know, I woke up thinking about Tylers diabetes so I figured I should check him. He was at 350 mg/dl, no ketones. I changed his infusion site, did a correction and will check him in about an hour and a half.

I would love to hear about how the honeymoon phase ended for you or your child. It seems like we were doing really well, then his numbers started creeping up. Adjusted his basals and his insulin to carb ratios, within a day we were back to normal, well for diabetes anyway. This lasted for about two days. Here we are again climbing in the day as well as at night again. How long does this last for? A month, two months?

I looked back at everything and now that I see his numbers for a longer period (I just got the connector for the computer for his pump) I can see that we have actually been doing a steady incline for about two months. His once 140 average is now about 190. I'm so frustrated. (by the way, I recommend spending the 50 bucks on the connector, love it)

We make alot of changes all of the time like most of you probably just to keep up. I call his endo and brain storm each week so we haven't let anything go, but geeze, we just made a bunch of changes last Wednesday and here we are again.

I am so concerned with how this will affect him in the future as everyone is I'm sure. It's driving me a little batty lately. We let him eat what he wants within reason of coarse. If he had his way he would be living with a small treat each day. (ie candy) Not happening.

I think his diet is excellent for the most part. When he was diagnosed about 11 months ago the nutritionist was impressed with what he was eating. I felt a little awkward at the time thinking gosh I hope his diet is ample. She was thrilled and said, this is going to be a piece of cake for him. (no pun intended)

He is eleven, almost five feet tall and 76 pounds, so pretty lean. He's naturally that way. He is starting to go through puberty, not fast but starting. I know this will have some bearing but it's making me a little nuts. One day in the 120-140 range, next day in the 290-410 range. Ugh!

We are changing endo's Sept 5th, I think the new dr will be more interested in helping. I have to push and say look, if I have to correct at each meal because he is above 200 it's not right. I know we just changed his basals etc but he needs it again. I was making changes myself but it's coming on hard and fast so I have reinstated their advice over the last month or so.

Would love some advice. Thank you in advance! God Bless! Tami

[selketine]

From what I remember William's insulin needs crept up slowly. At diagnosis he didn't need insulin overnight at all - whatever number we put him to bed with he was when he woke up pretty much. That started changing slowly and when he started hitting the 200's in the morning we knew we had to start giving overnight insulin (he was 26 months at diagnosis so his ranges were higher than for older kids).

After that point I don't remember as much variation - I think by 4 months he was done with the honeymoon pretty much. He was on lantus for awhile before going to the pump.

I still find that William's insulin needs go through cycles - sometimes higher and sometimes lower and I don't think that has anything to do with honeymooning at this point. Perhaps hormones. It seems consistent enough not to be due to exercise, etc.

[Boo]

I think it is always best to consult your endo when you seem overwhelmed by the numbers. As Ellen said in another post, they are great at seeing trends that we may be missing. They also may suggest an approach that we may not have even thought of before. So, I think you are doing the right thing by checking back in with them.

My son just turned 11, though no signs of puberty yet. Between puberty and just normal growth hormones, we will have our hands full for the next 5 years (at least). My son is about 5'2'', and just under 100 lbs. (98% for height, and 97% for weight - I always tease him that it is a good thing the diabetes stunted his growth, or he'd be the Jolly Green Giant!). Last month, at our endo appointment, she mentioned that "he has had quite a nice homeymoon" and that he still does not use quite the amount of insulin normal for his size. He was diagnosed over 2 years ago, and his insulin needs have gradually increased. It always seems to be a " 2 steps forward, one step backwards" kind of thing when it comes to making insulin adjustments for us. He started 2 years ago on a DAILY total of about 5 units of NPH and 2 of humalog (at age 8). He is now up to 28 units of NPH daily and about 10-11 units of humalog.

I think the "honeymoon" is such a vague term and so different for every person!

[Animan]

Adam came out of the honeymoon gradually but not consistently. I had it explained to me that the beta cells are not killed-off steadily or consistently, that their rate of production of insulin can vary, but, of course, continue to decline. Once this levels off it becomes much easier to manage bg, but insulin needs go way up. I remember having some really mixed feelings when he finally stopped making insulin....Life got "easier" in managing him, but sad too for obvious reasons.

[Tamara Gamble]

Hey Animan, I love your name. We have a buddy of Ty's that we call Antman. His name is Anthony and he's a small one. Antman. They love it at hockey.

I don't feel sad. I guess I had never looked at it the way that you do. It's interesting though. I can see why you would have felt that way. For me, I just want him stable period. I know there will be glitches. Last year was horrible for him up and down extremes almost every day and school was a nightmare. So if getting something over with will make him more stable, hooray!

We have puberty coming, yikes! Let's get the honeymoon done with. It makes sense that it doesn't happen all at once though. It wouldn't be safe if it did. But man, right before school just stinks. I'm just frustrated.

Ty has started calling me the nag. His dad squelched that one but truthfully I feel like one and I hate that. There was a time that I didn't have to always remind him. I think summer has made him lazy because I'm always on it so he doesn't have to be. It will be a rude awakening for him come next Tuesday when he goes back to school. Unfortuantely, they are pretty clueless so he's going to have to stay on top of things. I have no doubt he will. Last year when he didn't trust them he would say may I please speak with my mother and we would work it out by phone.

You know, it will all be good! It's just going to take time. Somewhere along the line I left my patience behind. I need to run back and get it.

We speak with the endo once a week always. It's just I would fine tune things. I know him better than they do. You know what I mean. We always go every three months so I didn't mean that we fired him or anything just that we are having to rely on him more now.

Good Luck to all and God Bless! Tami

[Animan]

Tami:

It was a long time ago he came out of the honeymoon. I was still kinda in "pretend-land" hoping somehow a miracle would happen and that's why it hit me harder. I think its called denial. Got over that fast.

Patience: ha, what's that? The very hardest thing for me with the school is to shut my mouth, don't critiscze, and offer "helpful" solutions in a non-thretening way. Easier said than done.

[EmmasMom]

For me, I just want him stable period. I know there will be glitches. Last year was horrible for him up and down extremes almost every day and school was a nightmare. So if getting something over with will make him more stable, hooray!



I hope that ending the honeymoon makes life easier, I hear that from time to time. But in our case it was far from true. The end of the honeymoon meant a much harder time keeping numbers under control because there is no "safety net" anymore. Ketones come on faster, your counter regulatory system isn't as good about preventing lows, etc. Ick!! Her numbers may have been slightly more random before it, but we rarely had the ketone problems and hypo unawareness that we had after. It's scary. I know her age has a lot to do with it, but it didn't make things any easier at our house.
Her honeymoon ended very soon after dx's, which is common for babies. But we still make insulin adjustments almost weekly based on growth, and when she has a growth spurt the hormones are very difficult to manage. I'm sure it's similar to puberty. God bless us all!;)

[georgia]

I really relate to animan about feeling sad, we are still honeymooning, only 2 months in and we've gone way down on the lantus so our humalog needs have really increased. I hate to admit it, or geez I hate to feel this way but it was so nice for a while when we didn't have to have a shot at every meal. For about two weeks we didn't have a shot a dinner, wow that was just a deep breath for me. Now as our humalog needs are going up I find it hard, sad, scarey to inject a larger volume of insulin. We are still on small amounts 1.5 u of lantus and 1-2 u of humalog at meals, but this is up from 0.5 humalog. I spoke with a woman from jdrf the other day, she said it is easier to manage her 6 year old now that the honeymoon is done, but then she mentioned that he is on 11 u of lantus. I know this sounds horrible, and I WILL do whatever is necessary, but it will be hard, heck it is hard to think about injecting that much into my little 3 year old. I know I should probably think of it differently, but injecting my child with insulin( and I know it keeps her alive and healthy) is a hard thing to do. Maybe it will get easier. We'll see.
just my 2 cents.

[Tamara Gamble]

Thanks, everyone for the advice. I know this disease is a sneaky little bugger. We all know the frustration. Someone mentioned more ketone problems at the end. I hope not. We dealt with that enough last year when they were still trying to get him stable. Poor kid. For him ketones sneak up so fast it's unreal.

I can't imagine having to do all of this on the little one's. I feel kinda lucky that Ty was older. I think the term nurotic would have suited me had this been the case. Oh, wait, I think nurotic sometimes fits me now anyway.

Yeah Animan, I get really worked up with school etc. as you all know but truthfully God has granted me with a great deal of restraint when I'm dealing with them so I am able to come accross effectively, for Ty's sake. Ty is the reason that I do what I do anyway so I always try to keep this in mind. Of coarse once I get to the car I'm on the phone venting to someone. (my poor hubby)

Hey Georgia, it does get easier. It's just part of everyday life for us now, there are just moments of frustration and it's normal to have recurrent depression for child and parents with any chronic disease. Keeping it in perspective is the best thing and will carry you through this. Give yourself time. It's only been two months. For us it's only eleven but it's so much better now. So hang tough.

I just spoke to someone the other day who's child has an incurable brain tumor and will die from it soon. This gave me a slap on the back of the head and helped me to see things a little more clearly. I'm not saying that diabetes is easy. If it was none of us would be here on this board. I'm just saying that it's treatable thank God. I am so grateful there is insulin. I am so grateful. We all know what the alternative would be.

The pump is such an awesome little device, I can't say enough about it. This changed our lives for the better that is for sure. I also feel blessed that we have this forum. Thank you everyone for your support, it means alot to me and to my family.

God Bless all of you! Tami