New insulin regimen

[Eri's mom]

Hi again!

Eri is back home. She was discharged today.
So, they took her off the lantus and now she is just on NPH and humalog. She gets 30u of NPH at breakfast and then another 30u of NPH at dinner. She takes the humalog when she has a bgl over 150.
We're a little bit concerned bc they don't want her to take any for any carbs and they cut her correction scale to 150-200 1u, 201-250 2u, etc...
She had a really hard time last night ... her bgl dropped to 53 and they couldn't get it corrected w/ even juice, so they had to put her on a dextrose drip.
Even from the IV in her arm, it took 3 tries to get blood, so that site ran it's course.
They are completely against a port(the endos), but the other docs think it is a great idea. We have surgical consult coming up for that for an outpatient procedure.

Her bgl's are now in the 200's, but they aren't too concerned about that...they want her around 180.

In other news, her GI doc had an xray done. She MAY need to be flushed out again bc of such slow motility, but we'll find out more about that next week.

She's in a pretty good mood now that she is home, just gets a bit nervous about the lows.

This is VERY similiar to the regimen she was on when first dx'd, which wasn't too bad bc her A1c was about 6.1 then.

I guess looking back at this whole thing, maybe the lantus wasn't good for her bc she's been on it since she was 11, and that is when all her DKA's started. I don't know, it just makes sense.

OK, so that's about it for now.
Hopefully her body will get used to this and she can have a healthy, DKA-free life from now on.

[gettingby]

Robin, I'll be praying that this works really well for Eri. Give her my love. (((Hugs)))

[jer.lawrence]

Good luck to you and your daughter! I hope it works out for you guys, it sounds like she's had a rough run lately.

[MMJ]

I volunteer my time/money in support of Juvenile Diabetes. These kids have to be so brave and strong.
Best of luck to you and Eri..
Stay strong and brave for her~

[Subby]

I'm not getting how she can have such a bad hypo from her insulin to be need a drip one night, and they release her the next day. Did they know what went wrong, and did they change and test the insulin regimen to be sure it is suitable and not causing issues?

I really want things to work. Just from what you have written, I don't get the approach from the doctors as to how that is being worked towards methodically and carefully.

[mortis505]

Here is hoping that things work out for Eri. Hugs to you both.

[SueM]

So, they took her off the lantus and now she is just on NPH and humalog. She gets 30u of NPH at breakfast and then another 30u of NPH at dinner. She takes the humalog when she has a bgl over 150.
We're a little bit concerned bc they don't want her to take any for any carbs and they cut her correction scale to 150-200 1u, 201-250 2u, etc...
She had a really hard time last night ... her bgl dropped to 53 and they couldn't get it corrected w/ even juice, so they had to put her on a dextrose drip.

Pardon me for stating the obvious, but if she has gone hypo to that extent, why not cut the NPH right the way back?
Then build it up until on the right dose.

[Eri's mom]

Thanks all...

Believe me, I questioned them about that as well, but for some reason, it just doesn't mean anything to them.
Earlier in the morning, before I drove up there, I received a call from Eri's roommates mom(we were roomies w/ them when Eri had her gall bladder out)...and she told me she couldn't believe how rude the nurse was to Eri or how strong Eri was bc she didn't cry or yell or argue back, she tried telling her just in a normal tone. Well, I called the nurse right away(bc the hospital is an hour away) and acted like I was just calling for info on Eri. Then I asked about the port. Well, firstly, she asked me just WHY Eri had dinner so late the night before. I told her that the endo's told her to eat whenever, plus she had a snack (that they want her to have) so she wasn't very hungry by then. Then, regarding the port, she told me that she thought it was wrong and that endo didn't want her to have one. I told her that endo is not her parent and that the emergency care team here requested it. They can't do it bc it has to be done at ACH, and she said, well, you won't be able to access it at home. DUH! I said she needs it bc all her veins are shot in her arms...it took them three tries to even get blood from the IV was in her arm bf any came out.
I did cut back her dose at night last night from 30 to 25 and the lowest she went was 65 with that. I told them I thought that 30 was too high.
We're truly hopeful that now DKA won't be an issue and that she will no longer be hospital bound.

Her attitude is doing a lot better as well(so far) so that is always a blessing!

[inkvisitor]

I'm a little late to the game here but I know that this has been a long difficult road for her and everyone involved.

Is she on the CGMS still? And how often are her blood sugars logged? Are they plotted on any type of graph? I know from what I've read that her BS is erratic but I wonder what could be found out if there were some strong constants (food, etc) and meticulous BS plotting to see *some* sort of pattern.
Forgive me if this has been done before - it just seems like the doctors are all over the place (which is one good reason to ditch them)!

[Eri's mom]

She had the CGMS on for 3 days and I gave them the monitor back personally and it was supposed to be ready today, but it's not. I called and they said probably next week.
I'm really interested to see the results.

Her bgl's are still off a bit. This morning she was 65 and she took her 30 u of NPH, ate around 830(pancake w/ no syrup...she hates syrup...and water. It is now 320, no ketones, but frustrating.
So, she will get the 5u of humalog, and then eat lunch.

We go back to the endo on January 10, so we'll see what they have to say then.
Eri wants to go to a different endo and we're still working on that.
They never got back to us about Joslin, so if I don't hear back from them by the end of today, we will contact on our own Monday.

[inkvisitor]

Well, just to put this out there...

Is there any way she can try a lower carb regimen for a little while? It might help narrow down stuff until things get a bit better.

I remember you saying that she was *not* supposed to bolus for meals? Did this happen when she at the pancake? I'd be about 320 too, probably!

I mean ****, when I was diagnosed no one EVER treated non *sugary* carbs like other ones (cookies were bad but bread wasn't, and so on). What a crock!

[SueM]

Her bgl's are still off a bit. This morning she was 65 and she took her 30 u of NPH, ate around 830(pancake w/ no syrup...she hates syrup...and water. It is now 320, no ketones, but frustrating.
So, she will get the 5u of humalog, and then eat lunch.

I am assuming you are joking by not giving Eri insulin to cover the carbs she is eating?
Even to a village idiot it must be obvious that a type 1 needs to cover carbs with insulin.
So stating the obvious, carbs eaten no insulin = massive rise in blood sugars.
NPH is nothing but a basal insulin. I very much doubt any Doctor would risk his license by giving such bad advice s/he is open to being sued for mal practice I would have thought.

[Jan B]

Then, regarding the port, she told me that she thought it was wrong and that endo didn't want her to have one. I told her that endo is not her parent and that the emergency care team here requested it. They can't do it bc it has to be done at ACH, and she said, well, you won't be able to access it at home. DUH! I said she needs it bc all her veins are shot in her arms...it took them three tries to even get blood from the IV was in her arm bf any came out.

For some reason I started thinking about this port idea. It sounds like someone is planning to continually be in the ER! I understand not wanting lots of sticks (and unsuccessful ones) while there, but it sounds very extreme overall. Like branding Eri as more ill than she is . . . when it's not necessary.

[Eri's mom]

The doctor does NOT want her to bolus in for eating...the only time she wants her to take humalog is if she has a bgl of 150 or higher.
Neither Eri or myself agree with that, and her dad actually ran after the endo to see if he actually heard her right.
She did cover for the pancake, her bgl still spiked.
I'm not an idiot, I do understand she needs insulin...we're sort of just going on our own gut and giving insulin as we know she needs it. Believe me, we are just as baffled as anyone with the endo telling her NOT to bolus in for eating, I even question each shift of nurses and the floor doctors...and the endo herself each time we saw her.

It's even more frustrating bc they haven't even called to see how she is(after I called them) and she wasn't even planning no coming in to talk with her again while she was in the hospital yesterday, she just passed along what she wanted said to her through the nurses and floor doctor(s).

Now Eri's bgl is 138 and that was with lunch with chicken and a small potato. (it's a LOT better than what it has been...and I don't even want to imagine what it would have been w/o the humalog given to her for eating).
As I mentioned b/f, the endo says she wants Eri around 180(I seriously cannot understand that)...and Eri(and myself) are both quite baffled by that.

As for the port, I know it sounds like they expect her to be in there a lot. Personally, I have a feeling she won't be bc I think the NPH will help more, for some reason lantus just did not seem to work very well(after 5 yrs of it)...
She is a VERY hard stick, so I can understand them wanting it to be more convenient for them and Eri, but who knows now?

Still no word back from them yet, they have another 45 minutes...
If not, we will be searching for a new endo.

[inkvisitor]

If I were you I'd ditch that doctor immediately and start filing some complaints. Even though I don't know every detail of the situation and I know that the situation is difficult, the basic things you have relayed about this endo seem absolutely ridiculous! Did your endo give any other reason for not bolusing for meals? Or does he/she think that eating would really have no effect? My goodness.

Glad you went against it, though...that's a straight ticket to trouble!