Author: Eri’s mom

…that Eri just MAY be on the path to better health.

Her bgl’s have been pretty good(the highest lately has been in the low 200’s and that was a few days ago).
She’s been having more lows(like in the 50’s) but she’s good about getting her bgl to around 70-80 w/o a problem.

Her attitude is a LOT better and she’s not so on edge.

Now, I think there are a few things that are helping with this:
(she’d kill me if she knew I mentioned this, but…) she hadn’t had a period since last March, and last week she FINALLY started, which I think is what may have spiked her before she went in(she gets nausea and anxiety beforehand)…she’s on a really good schedule and she’s actually really happy. Her boyfriend(new) has been a good influence, so that helps.
She’s feeling better about herself, has actually been approached to model, etc…AND, she’s finally seeing a psychologist that she likes.

I’m holding my breath, but I really need to believe that she is heading in the right direction.
She does smell of ketones every so often but her bgl’s are either normal or low and she’s not showing any ketones at all. It’s just that dang smell.

So, it’s all good now, and like I said, I’m really believing that it will continue to be 🙂

…does she have to have low bgl’s and moderate ketones?
It’s frustrating as ever.

Yes, she is getting her insulin, she is eating right and taking care of herself.
Her body just has a mind of its own.

…regarding Eri’s CGMS and about Joslin.

They said that the CGMS was all over the place, not easy to read. They want to try it again next month.
As for Joslin, the social worker told me that she spoke to people there(and ppl around) and that it is really no different from the team that Eri has here. OK, yes, I understand that they are all endo’s and what not, but different opinions, etc…

Eri was in the hospital again. She just got out last night. The endo said to look at the positive…it’s been just about a month since she was last in(which, ok, I can understand being positive, I LIKE positive).(ok, last in for DKA, she was in last week for something else completely…nothing diabetes related).

She is still on the NPH and novolog regimen, with some more tweaking, so we’ll see. It all happened so fast. She woke up Sunday morning with an upset stomach(she had one for a few days, thought it was a new med she was on)…her bgl was 65, but we smelled ketones. She tested…no ketones(annoying)…so, she went to lie down and an hour or so later it was 175…still no ketones showing up, but she got 2 u of novolog and took a shower bc water calms her.
We checked her bgl an hour later and she was up to 268…more insulin and then her NPH(36u). She wasn’t able to eat anything as she was really nauseous, so I got ready and told her she had to go in bc the vomiting wouldn’t stop.
By that time, her bgl went to 438…she made it to the other bathroom and couldn’t move…I had to call 911. She was throwing up blood at this point.
They couldn’t get an IV in(the paramedics) so when we got to the hospital they finally got one in.
Her labs came back, her bgl was up to the 500’s and her co2 was at 3.
They transferred her to ACH to their ICU, again.
They are treating her stomach for gastritis and whatnot and we’re watching her bgl’s(obviously) to see if we have to up her NPH again.

Yes, I am frustrated and I am still looking for more info and answers. Believe me, I’m doing all that I can and so is she. It’s part of what pushed her over the edge last week.

…I was so glad they switched her off NPH.
Her bgl’s are ALL over the place, and she’s had so many "HI"’s it’s ridiculous(w/o any of the symptoms she had while on Lantus, like DKA and ketone smells emitting from her body so strong the house reeked of them).
I spoke with the one CDE yesterday and they said I could change her correction from the 150-200 1u(and upwards, one u per 50) to 125-150 1u, 151-200 2u, etc)
It’s CRAZY!
She does drop lower(like 60’s) but the higher readings, from 200-HI are more common.
She just went to bed about an hour ago and she had taken her correction and I heard her get up for the bathroom and asked if she was ok and she said "No, I need cheese and I need cheese NOW"…ummm, ok…she sounded like she was low, so I tested her and her bgl was 523! That was with 15u of humalog about an hour or so before that.(her NPH was at dinner time around 6:30).
She is talking a lot about the pump(I know, NOT a miracle worker, but it is something new to try).
I just want her to be normal and healthy…well, a healthy normal…

OK, I’ll stop ranting here.
It’s Christmas and I shouldn’t rant…sorry …

Merry Christmas to all!

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.

Hi again,
Eri’s bgl’s are crazy, no matter what, and DKA just hits so quickly with her.
The docs have said that she is one of the most sensitive they’ve seen, which isn’t really comforting.
We’ll be talking to the docs later this morning to see about a referral to Joslin, although a couple docs suggested either Orlando or the hospital in Miami.
We’ll see.
They have to put a port in bc they got the last vein in her arm and the other IV is in her neck.

They have her chart from her CGMS, and she’s been keeping it going even after taking it off yesterday. The docs can see how she fluctuates no matter what is done. It’s beyond frustrating for her…not to mention my husband and myself.

Hi again,

Thursday, when Eri got her CGMS, her bgl’s were great, up until about 3pm…then they were in the 50’s(with eating).
After the whole day of them staying between 55-60, they went up to HI(a little after midnight). She had no ketones at that time.
When she woke up in the morning(after she and I both checking her bgl throughout the night and insulin)…she was still HI and had a trace of ketones.
Finally, around noon(and a call in to her CDE) her bgl dropped to 203. It finally went down after that to around 103 and is now 88, but she now has moderate ketones. It’s beyond frustrating!
She at a good dinner of chicken and some potato and salad last night, but she had the heart palps like crazy.
No vomiting, thank God.
The CDE said she was glad that Eri at least has the CGMS so that they can go by that as well as her glucometer and her patient log that she is keeping. She’s been extremely thorough with that.
She’s beyond frustrated bc she has no symptoms of lows anymore and she is a bit scared bc she never has symptoms of Hi’s until she’s vomiting.

Here’s to hoping she won’t end up in the hospital and that she can just correct herself.
She’s drinking gatorade and bolusing in, so hopefully the insulin will start working.
The other night, w/ all the HI readings, it took about 12 hours bc it went down to 201(and about 40 units of humalog and her 38 of lantus and 18 of NPH).

Eri now has a CGMS. Hopefully, this will help show them something w/ her bgl’s since they have been so odd.