# J having a hideous "honeymoon"!



## Kei (Apr 29, 2010)

Yesterday I had a call from J's DSN to say that the consultant wanted him taken off all insulin from yesterday evening. Just for a short while. It's unusual, but not unheard-of, to do this. They're worried that he's exhausting his liver's store of glycogen (?) with all the extreme hypos, and he's on the lowest amount of insulin he could possibly have at the moment! The poor boy is worn out with all the lows, but I'm not looking forward to what usually happens with the highs if his blood sugars do go up (agression, bedwetting...). 

We're to keep monitoring him and if he stays under 15 and his ketones are under 1, not to worry. If he goes above 15 and his ketones go over 1, they'll probably put him on 1 unit of background insulin.  I'm in daily contact with the DSNs at the moment, and they're fantastic.

He had no insulin at all yesterday dinnertime/night, and still went hypo by suppertime.  In the night I checked him twice and he was going down steadily.  By 06:30 this morning he was hypo again.

School haven't phoned so far, so I'm guessing his lunchtime blood sugars were below 15.


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## smile4loubie (Apr 29, 2010)

Awwww Im sorry he is having such a rough time, well all of you. I hope his levels settle down soon xx hugs xx


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## SacredHeart (Apr 29, 2010)

This sounds hauntingly familiar. I got taken off all insulin about 2 months after diagnosis. It's not an easy time, it lasted about a month or so, and I'm still working with really large carb to insulin ratios (morning 1:20, lunch 1:25, evening 1:35), a year in. So you're right, it's not unheard of! I don't know if there's anything I can help with, but give me a yell if there is


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## gewatts (Apr 29, 2010)

How stressful for you both. I've never heard of being taken off insulin but it obviously does happen and I think I know very little! Good luck with it xx


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## rspence (Apr 29, 2010)

*sorry for you*

I'm finding the diabetes so tiring, relentless and draining and thats without added complications such as the honeymoon period.

JP's Bm's are nearly always high at the moment - hardly ever below 13.

I don't think I really get what the honeymoon period means or is but I can tell from your post it is really frustrating and nerve racking.

take care and be gentle on yourself at this tough time,
rachel


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## smile4loubie (Apr 29, 2010)

the honeymoon period is when you start taking insulin and it kind of kick starts your pancreas to produce the tiny amount of insulin it can before it stops producing it completely.


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## gewatts (Apr 29, 2010)

I never really got the honeymoon period thing either. Think it's when you are first dxd, your pancreas is still producing some insulin but eventually this will stop ( I may be wrong here) . We were told it would be obvious when the honeymoon period was over but to be honest , we are 4 years in and never noticed anything! x


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## jimmysmum (Apr 29, 2010)

Hiya hun,
I know weve spoke anyway but just wanted to say huggles to little man (and you) it must be so difficult, lucky him not having no injections for a while tho and he could prob get away with few yummy treats  
Both my 2 are still in honeymoons, my son has been in it since Dec and D since March, they are on tiny amounts of insulin xx


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## Kei (Apr 29, 2010)

SacredHeart said:


> This sounds hauntingly familiar. I got taken off all insulin about 2 months after diagnosis. It's not an easy time, it lasted about a month or so, and I'm still working with really large carb to insulin ratios (morning 1:20, lunch 1:25, evening 1:35), a year in. So you're right, it's not unheard of! I don't know if there's anything I can help with, but give me a yell if there is



Thank you!  It's nice to hear from someone who has done this themselves.


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## Kei (Apr 29, 2010)

F never seemed to have a honeymoon period really, and it's 9 months since she was diagnosed.  She has been on what seems to be a fairly substantial dose ever since coming out of hospital.  I don't know whether having the bad DKA before diagnosis would mean that she wouldn't have one?

J is loving not having to have the injections, but was jealous today that his sister went hypo and he didn't, because he loves glucose tablets!!  Kids, eh?!


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## sofaraway (Apr 30, 2010)

From what I have read on other forums it seems that this isn't too uncommon in kids who are caught early. I'm sure your team is keeping a bery close eye on him and will restart insulin once it is needed.


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## Kei (Apr 30, 2010)

They're being great.  The DSN is going to keep her mobile on for us this weekend in case I need to contact her (rather than us having to ring the children's ward, which is the usual procedure at the weekend).  

J is still waking up hypo, but his daytime numbers yesterday were a bit better.


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## Patricia (Apr 30, 2010)

Good grief, how stressful, as others have said. Thank goodness you have a good team. It must be making you tear your hair out though.

You always sound so incredibly sensible and sorted. Whether you are or not (!), this is how you sound, so something is working well for you and your family. Hang in there.


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## Kei (Apr 30, 2010)

Patricia said:


> You always sound so incredibly sensible and sorted. Whether you are or not (!), this is how you sound, so something is working well for you and your family. Hang in there.



Thanks.    I certainly don't feel that way, but both my diabetic kids and my non-diabetic one seem to be growing, healthy and happy so, despite feeling like I'm in a constant muddle, I can't be too far out.


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## Kei (Apr 30, 2010)

Weirdly enough, instead of going high (as I was expecting) J has actually been low all day today!!  He woke up hypo, was 2.4 at lunch and 2.9 at dinnertime.  7.4 at supper.  I'll be night checking tonight, I think!


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## glodee (Apr 30, 2010)

Just a note to say how much I admire you coping with 2 young kids with D. I have a 14yrs old type 1 and I often wondered how mums cope when the kids are very young. You are doing marvellously. By the time Gemma was Dx'd she was 12 so able to tell me when she felt hypo. I dont think I could've managed if she'd been younger.
Hope things settle soon for J. 
Glodee


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## Gemma444 (May 1, 2010)

hya kei 

sorry to hear you have been having a rough time with J. Glad your DSN is keeping her phone on for you. Hows things going? x


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## Kei (May 1, 2010)

Not great today.  :-/  He was 23.5 in the night, but only 0.2 ketones, and he went down to 3.1 by morning without any assistance.  

Lunchtime - he's back up to 19ish again, but so far 0.0 ketones.  Have you ever tried telling a 5-year-old that he has to sit still and drink lots, when what he really wants is to run round the garden with his sisters?


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## Kei (May 5, 2010)

After a week of increasingly high numbers, wet beds, etc... we had clinic today.  The consultant has put J onto MDI.  1 unit of Levemir in the morning and Novorapid at 1:25 with meals.  I'm going in to school tomorrow and Friday to do his lunchtime Novorapid.  The DSN will go in on Monday to do it and train staff and she'll go in every day for the rest of the week (and beyond if needed) to oversee them doing the lunch injection.

Fingers crossed this gives him better levels.


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## rspence (May 5, 2010)

*Kei - MDI's*

Kei - hope the MDI's don't tire you to omuch! Is your other Diabetic child on MDI?

JP is on 4 units levemir n the morning and we do 1:20 at breakfast, 1:25 at dinner and tea. And we do a sliding corrective scale for when his levels are more than 12 - which they ar emost of the time!

Why did he have to sit still and not run around? I know you're rght but I don't know what effect it has? Yes and drinking lots is a challenge too - JP has started to refuse  water and so i'm annoyed about that!

hope the school get the hang of injections quickly for you.

It must be such a headache having 2 diabetic kids - YOU ARE AMAZING and DOING A FAB JOB - make sure you read that and believe it! in fact read it again with the word I at the beginning.

much love

rachel


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## rspence (May 5, 2010)

*PS a jjust in case...*

Kei - just in case you stll find his numbers are all over the place don't beat yourself up over it (please don't blame yourself) I really hope of course it works but if its still chaotic (like it is with JP) don't carry any guilt. But like i say we are all rooting for you and him on this


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## Northerner (May 5, 2010)

rspence said:


> ...
> Why did he have to sit still and not run around? I know you're rght but I don't know what effect it has? Yes and drinking lots is a challenge too - JP has started to refuse  water and so i'm annoyed about that!
> ...



Hi Rachel, running around when levels are already that high (19) will probably cause them to go higher, so have to stay still until levels come down


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## rspence (May 6, 2010)

*thanks northener*

maybe thats dentified the problem with my JP - i thought if levels were high they had to activate the insulin by running around so his levels are often in the 20's! maybe I've been making his sugar levels worse. oh dear.


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## Kei (May 6, 2010)

Yes, Northener is right.  It can send their levels up, and if they already have ketones in their bloodstream, running around can increase the ketones too.    I have a little card for J's teachers in his testing kit.  It basically says ...

_Below 4
*J will need orange juice or 2 - 3 glucose tablets (both in his emergency box in class 1)
Test 10 - 15 mins later.  If numbers are up give a starchy food (necessary).
If still low, repeat from *
If it is lunchtime, starchy = sandwich. At any other time a Digestive biscuit from his emergency box.

4 - 7  
Blood sugars fine.  Take no action.

8 - 12
Make sure J is active and drinking enough water.

12 +
Sit J down with a glass of water.  Phone Mum if J feels ill or strange.
Otherwise just re-test after 30 minutes to check it?s going down.

18+
Sit J down with a glass of water and phone Mum, Dad or diabetes nurse straight away._

That's pretty much what we do at home too.  Anything below 12 he moves about a bit and drinks lots.  If it's over 12 I make him sit down with some water until it goes down a bit.

No, F isn't on MDI yet.  She's still on Mixtard twice daily.  It WAS working quite well for her, but her numbers are a bit erratic at the moment.  If we can't get them levelled out again by her next appointment, she'll probably go onto MDI too.


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## rspence (May 6, 2010)

*Kei*

thats a brilliant rundown - i'm wondering why I haven't got that sort of thing in my head??!! thank so much for taking time to type it out. I'll follow it up for the right kiind of one for JP. 

have good day,
rach


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## Kei (May 6, 2010)

rspence said:


> thats a brilliant rundown - i'm wondering why I haven't got that sort of thing in my head??!! thank so much for taking time to type it out. I'll follow it up for the right kiind of one for JP.
> 
> have good day,
> rach



Here's the document I made for my two at school.  http://www.mediafire.com/?jzenmmmdxmg

I print it out, cut out the two rectangles, put them back-to-back and laminate them.  That stays with each child's monitor at school so that whoever helps them knows what to do.  The staff find it a very useful reminder.  If you want I can send you a MS Word copy, so you could just alter the bits you want.


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## Gemma444 (May 6, 2010)

hya kei 

hows j doing on MDI? are the school helping out ok? At least you already know how to carb count. Havent asked how F's doing with all the issues you are having with J.

gem xx


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## Kei (May 6, 2010)

It has only been one day so it's difficult to tell, and J only ate half his lunch, then wondered why he was hypo by 4:30!  I explained again why he needs to eat the full 60 carbs if we've injected for it.    I'm just glad he only dropped to 2.7!  His big sister decided not to eat her apple at lunch too, but actually went high - probably because she's coming down with a cold.  I'm going to have to remind the teachers tomorrow to have a word with their dinner ladies to make sure my kids eat ALL their lunch before they're allowed out to play.  Normally they always do.  I'm not sure what got into them today!

The injection at lunchtime went well.  DH and I both went in.  J's teacher watched while we did the injection, and said that her dad (who has type 2) uses a similar pen for his insulin too.  She was very positive and keen to get the DSN in on Monday to train everyone.

The good news is that both kids were within good levels by suppertime (F was 6.2 and J was 5.2).  That was only achieved by giving F a correction dose of Novorapid at dinnertime, but hey, good levels are good levels!  

I think the MDI may work well for J when we're into the swing of it and have worked out the correct ratios for him.

F is glad she's not getting the 4 injections a day, but was a bit miffed that J was getting all the attention yesterday!  She tends to get bruises and bumpy injection sites more easily than J, so I can see MDI is going to be harder on her.


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## Gemma444 (May 7, 2010)

Hya Kei 

God that must get confusing with whos on what dose etc, it would confuse the hell out of me. I think as F gets older she will prob want more fredom with things and mybe choose herself to go on MDI you never know. I just told J he can get more of what he wants ashe hates me saying snack time etc and he doesnt always want anything. But if F's levels are wokring on mixes then there no need to change. We went to the clinic 2 weeks ago and the doctor agreed that Js bloods were very variable and his hba1c was 9.0 he was 9.6 then 8.9 and now 9.0 so nothing has improved for us so thats why we are changing. Good luck with it all you must be knackered.. x


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## gewatts (May 7, 2010)

Kei - Katie has recently moved to MDI. We inject after she has eaten so that she doesn't have to eat everything on her plate. It seems to be working so far. It certainly means that we no longer have to battle over her eating all of her meal. Life is a lot easier!


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## Kei (May 8, 2010)

gewatts said:


> Kei - Katie has recently moved to MDI. We inject after she has eaten so that she doesn't have to eat everything on her plate. It seems to be working so far. It certainly means that we no longer have to battle over her eating all of her meal. Life is a lot easier!



That's what we do at dinnertime, but at school they need to do the injection before he eats, so he needs to eat the whole meal.  The dinnerladies are now aware of this and checked him on Friday.  

Mind you - I still insist that he eats everything on his plate at dinnertime.  It would be hardly fair to have one rule for him and another for F!  

Great levels yesterday and NO HYPO this morning!


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