We Have To Remove Pump....

[zimbie45]

Hi all..

Well as you know we have been having lots of problems with charlzie blood sugar levels.. And at this point untill further notice have to remove the pump...I talked to the CDE"S at her endos office. and a group of them where already goign over charlize #'s as of friday.. SO i updated them on our horrible weekend adn adv what change i already did.. (carb ratio increase from 17/1 to 25/1 decreased all basels by 50%) MOst day perfect at school.. WOO HOO... then at 1 pm she went for a check and was 95..... ok not bad.. nurse happy but new better and decided to give charlize a glucose tablet ( 4 carbs quick sugar ).. rechecked charlzie 15 min later and she DROPPED to 70.... WHAT............ no clue had to end up giving her 1 more tablet and a 14 carbs juice to get her back in normal range....

The nurse's and doctors have no idea what is going on... they have never had this happen befor.... SO we have to remove pump.. go back to shots for a while till her #'s stabelize.. We are also not goign back to school untill she is stabelized either, becasue tech we dont know if going to shots will help or not.... we dont knwo if something else is going on.. we dont know if she has some how changed and is even more sensitive to insulin than befor.. we dont know if the pump is broken... who knows.. so the doctors,nurse and pump company are going to talk and come up with a plan..

I am heart broken.. sad.. mad, scared.. angry... UGH:mad: :eek: and i just want to cry and make all better for my girl.. this is not fair.......

[selketine]

I don't know how shots can make it easier but I hope it does! Did they consider just getting another pump overnighted to you and let you try that one? I've not heard of a pump malfunctioning that way but no doubt it could happen. Always safe to check it out and rule out anything you can and go from there.

I hope she is able to get back to school and with good numbers very soon!

[wendyc]

Chandra,
You're right, this isn't fair. So much for a 5yr old to have to deal with. Why we were all picked for this is beyond me!
I'm so sorry to hear about your problems since school started. I hope by taking C off the pump for a bit, it will stabilize her. Will the docs let her stay on the pump for just bolus, and not have any basal (don't know if the pump allows this)? It would just be a shame that C has to go back to MDI (at least she's used to it, but what a bummer).

My thoughts are with you. You are doing a great job managing!

[Mom2rh]

I'm so sorry. I hope they get this figured out....{{{HUGS******

[dmconrad]

I am so sorry that this is what is happening for all of you. None of this is fair, especially to the little ones (and their parents!!!) I know this is so frustrating for you and for C. It sounds like you have a great team of folks working for you and for her and hopefully they will get this resolved and you will have something to teach all of us about pump use and care?! :confused: Please know that we are all thinking about you!

take care,

[bkfkmc]

Geez, Chandra. This is all very puzzling and frustrating I know. I certainly hope that you all can figure out what is going on soon. Starting kindergarten is adjustment enough without all this chaos. I have come to the conclusion that the motto for D should be Always Expect the Unexpected because every time I think "OK, I think we've got a handle on this thing" then WHAM something crazy happens to keep us on our toes. Hope all gets straighted out very soon!

[hold48398]

Ugh. Chandra, I am sooo sorry to hear that :(. I don't think Mia would even let me take her pump again...ever!! I really really hope they can figure out quickly what's happening to Charlize and get her back to a routine day with routine numbers... (We had a small puzzle ourselved this weekend but nothing like you are going through.) Please let us know how things are going... Best of luck!!

[bethdou]

Chandra,
I'm so sorry to hear that! Which doc did you talk to - Hahnke? I wouldn't be surprised if it's one of the "old school" docs, but I would expect Hahnke or Dajani to try something else....but then again, what do I know - we aren't pumping (yet). It stinks that she has to stay home, too - are you going to work every day or having to call in sick and stay with her? If you have to stay home from work, then maybe you could just go with her to school. It does sound like she's best off having LOTS of monitoring, though, more than they can do at school. TOOOOO weird!!!

More {{{Hugs****** and good, positive, evened-out-number thoughts coming your way!

Call me if I can do anything or if you want to vent "in person"....

[EmmasMom]

I'm so sorry!:(

I just wanted to share that this happened to my husband months after his dx's. He had everything stable for months and then suddenly had very erratic numbers and a lot of lows for no reason. It was a second honeymoon of sorts. His body would produce small amounts of insulin sporadically, and it was impossible to know what to do. Very frustrating an scary!
Most people don't realize that your body can grow new beta cells for a long time after the honeymoon is over, but your immune system kills them before they can produce insulin... usually. If those cells manage to survive long enough you have some serious blood sugar problems!!!

I don't know if this is what's happening with Charlize, but it sounds like it could be. I hope you get it back under control quickly! :cwds:

[Tamara Gamble]

Hey Chandra, I am so sorry that all of this has happened. I can't really see how using shots would give you more control either but I certainly hope it works. They may be assesing the choices that they have made for basals etc and need to take a step back. Hope all goes well.

God Bless your little one! Hang tough. Tami

[zimbie45]

Hi
Well its 2 am.. im still stressed adn cant sleep... # where ok for a while but high all night so far ( 250-350 range, atleast its not 400-500 like befor).. sucks having to give shots in the middle of the night :eek: .. BUt Charlize is handling this much better than i expected... To answer a few questions... IM not entirely sure why they are switching to lantus/novalog or what info they expect ot get from in.. i assum how she reacts and to see if its is the pump or not...??? They are hopeing it will level her out and give her a break form this up and down............the doc i talk to this weekend was a brand new resident!!! not one of the more tenur docs.....WE knew about the 2nd honeymoon thing becuase it has happened to charlzie last december and we had to take almost completely off insulin for almost 3 weeks.. WEIRD, but she was always low and no HIGHS... To kinda give a better description of what has been going on is simply this.... SHe is having sudden, frequent unexplainable lows that will bottom her out somewhere in the 30's to 40's..... or she will have Extream HIGHS )400-500's) that wont break.... ALso there are times when her body will do the oppisted of what you basically tell it to do.............. ( ie.... GIve insulin... she will go high not lower, be low and treat with glucose, and cont to go low!!!! rather than go back to normal, she will eat and go low... )


We dont knwo if there is somethign going on that none of us can figure out? We dont know if besideds school and the cold, that maybe seh is having a growth spurt.. she has been eating alot lately but it seems its due to the HIGHS and lows and not anything else ( charlize will get extream hunger with either one ).. they dont know if her pumps not working properly, SImply none of it makes since and we all have no clue...

[zimbie45]

oh yeah

To everyone thank you so much for your support, THis site has ment the world to me adn has helped in this process so much.. It means lot to me thanks you

[Tamara Gamble]

Hey Chandra, I'm up with ya girl. Of coarse it's 5:48 here. Just wanted you to know you aren't alone. Soon Charlize will be back in the game, just sit tight. Thinking of you both.

God Bless! Tami

[Becky]

I just wanted to share that this happened to my husband months after his dx's. He had everything stable for months and then suddenly had very erratic numbers and a lot of lows for no reason. It was a second honeymoon of sorts. His body would produce small amounts of insulin sporadically, and it was impossible to know what to do. Very frustrating an scary! :cwds:


I had a similar experience when I started pumping. Lots of lows, and an inability to get the basals right without crashing. My doc and pump trainer decided to try using U-50 (diluted) insulin in my pump to see if we could stabilize things. I spent about 6 months on U-50 before my numbers started creeping up, much like they do when a honeymoon ends, and I could switch back to U-100. The diluted insulin was a nuisance because I had to go to a compounding pharmacy 30 minutes away, but it made the whole transition so much easier. From what I understand, this is an "off-label" use of both the Humalog and the pump, but I was lucky to have a doctor willing to try it.

Good luck Chandra- don't give up on the pump! It has truly transformed my life and was worth the effort to get things straightened out.

Becky
T1 since 1998

[hartpukas]

Big hugs to you and Charlize! I hope it all gets figured out and she can get back into her routine again. Prayers and positive energy are being sent your way.:cwds:

[sheila]

I hope you get everything figured out quickly.
((((hugs))))

[Mary Lou]

I'm really new to this web site:cwds: , but would like to add my thoughts and best wishes to you, too. I hope that everything settles down for you. it's so frustrating to see your little one have to struggle so much, all the time.

[jeep_bluetj]

Sorry to hear about your difficulty. I too, want to hear the exact reason the endo thinks that MDI is going to give better results than a pump. Possibly using lantus for basal, but how is an injection of novolog different via syringe/pen/pump?

I had a similar experience when I started pumping. Lots of lows, and an inability to get the basals right without crashing. My doc and pump trainer decided to try using U-50 (diluted) insulin in my pump to see if we could stabilize things. I spent about 6 months on U-50 before my numbers started creeping up, much like they do when a honeymoon ends, and I could switch back to U-100.

This is a good idea, imho.

[zimbie45]

So far still HIGH 455.. and nothing we have been on the phone with the doct's they are still baffelled... I am antisipating a crash here or somethign.. i just dont know.. we are already increasing lantus sine she increased thru the night and i had to give her a shot.. since putting her on shots yesterday at 5:30 she has had 6 shots already for normal care and such.. ( OUCH).. I forgot how much rules are really involved with the shots and We want our pump back..... keep you all posted...

[zimbie45]

just an update.. We broke 400's and got down to 135 woo hoooo.... Also we are goig to go to see the doctors tomarrow to see if they can figure something out.. And the school will not allow charlzie back till she has a doctor's note...

[hold48398]

oh good, i hope things continue to improve... too bad you guys aren't around the corner from us...couldve invited you over for a playdate to take charlize's mind off things..we are all home from school too till the hurricane/storm passes.

please continue to update us on charlize's progress so we don't worry too much, ok!!

[zimbie45]

oh i hope the storm is not going to go any where near you....

[golfermom]

Hi Chandra,

Have you considered giving a daily shot of Lantus and using the pump for carb boluses and corrections? This would eliminate alot of pokes for your daughter. I know that you said you were questioning the accuracy of the pump. Have you contacted the pump company for a replacement?

My teen-age son plays football and takes the pump off for about three hours at a time, five days a week. We have not been able to keep up with the highs, even though he replaces the basals. So we are back on Lantus for his background, long-lasting insulin and then he boluses for carbs and corrections. We only do this for football season and it has worked out quite well. Just a thought! Good luck to you and your little one with this issue.

[Kelly]

Oh no! That is awful. I hope they can figure out whats going on to the poor lil chicken! You are in our thoughts. Big Hugs! :cwds:

[lisamomtotwins]

How is she doing now? i really dont understand why they took her off the pump. I would think you would have much better control with the pump then shots esp since she was used to that. I dont know, sometimes dr;s do crazy things!!! When on the pump did you try basal and bolus testing with fasting??

[zimbie45]

Hi WE temp took off pump to make sure that was not the problem.. still dont know all whats going on.. but we re attached the pump last night... im going to post more on the updated verson..