Eri's in ICU

[Eri's mom]

Hi ...
Eri was doing great w/ her readings lately, especially the past few days. Then, around 9:30 tonight, she jumped up and started puking...well, we took her right in b/c the weather stinks and I didn't feel it was good to wait.
Her bgl that they got from her bloodwork was 736mg/dL(she was 153 a couple hours b/f that...no food, we ate at 6 and all lantus and novolog was taken)...her CO2 is at 5...she has like prickly skin all over and her heartrate got up to 150bpm. She is at a "resting" rate of around 134bpm.
Anyhow, after they moved her to ICU, informing me that she had now been in DKA twice in two months, all the sudden, out of nowhere, she starts screaming w/ tears rolling down her face...in complete pain...her upper right side. They gave her a pain med and had an xray taken. He doesn't think it is appendicitis, not sure if it is gallbladder related and is trying to rule out pancreatitis.
She's like a wild woman...telling me she may just go meet up w/ Aunt Deb(who passed in '04) and then was angry w/ me b/c I wouldn't give her water(she's not allowed anything by mouth)...she actually told me not to show my face around her if I wouldn't give her water!
Then, bf we left, I kissed her and she said she loved me and to remember to bring dad's heart pillow he got from his open heart surgery and a water bottle to hold on her chest.

I'll see her in a few hours...I have to get my other kids off to school, get that stuff she wants and try to get a bit of rest...plus we have some ppl coming to look at the house, but we dont have to be here.

So, that's where we are at now.
If you can, please keep her in prayer...I've never seen it hit this fast...I mean, she was GREAT and then just instantly went down.

I'll keep you posted!
Thanks :)

[2high]

Praying for sure, Robin... let us know.

xox

[ant hill]

WOW!!! That's not good at all and so I will have you in my thoughts.
Bid you well.

[thomas mum]

Thinking of you all. Good luck and prayers. xxxx

[Cyborg]

That poor girl... God bless. I hope and pray she will be ok.

It sounds like she a CGMS may be helpful.

[caswellhb]

You are all in my thoughts. Let her know we are here for her please.

Heather.

[Holly]

Thinking of you both.

[WAMB00]

In my thoughts and prayers.

[shockme]

poor eri! i will keep you 2 in my thoughts! (((((HUGS))))) trish

[davef]

My prayers and thoughts are with you all, will make sure my children include Eri in their prayers.

[shabbie]

oh my goodness! what a year youve all had!

my thoughts and prayers are with eri for a speedy recovery.

[belyro]

Keeping you and Eri (and the whole family) in my thoughts and prayers. So sorry this is happening to you. :(

[Jan B]

I am praying for Eri and you. I hope a satisfying answer comes to you soon about why this was so fast and extreme.

Infections can do mean things, including skyrocket the bg.

Sending you strength & love --

[valc3]

Keeping Eri and your family in my prayers. Keep us posted.

[Dewey]

Robin, I'm so sorry this is happening. :( I hope & pray that you, Eri & everyone in your family will be alright, and that Eri will recover very soon! (((((Hugs!!!)))))

That poor girl... God bless. I hope and pray she will be ok.

It sounds like she a CGMS may be helpful.
I totally agree, Cyborg. Maybe she can be put on one? Have the doctors offered something like this to you/her, Robin? It may not provide all the answers (i.e. the "why"), but it will at least give forewarnings of high sugars & can possibly prevent issues like this from occurring.

[Carwy]

Robin,
I so sorry this has happened again. Please know that you and eri and your whole family are always in my thoughts and prayers.

[Twisted]

I'm sorry to hear about Eri. I'll keep you all in my prayers.

[kstreeter513]

Im sorry about what is going on with Eri. Ill be thinking of you all.

[Lizzy]

Robin, you are all in my thoughts and prayers. Be sure to take care of yourself too.

[gettingby]

Poor Eri. I have watched Eri grow and saw all of the things that I've happened to her since I've been on this forum. She's like the DF kid. Robin, you and your entire family are in my thoughts and prayers. (((hugs))) and love to you and Eri.

[mg_2204]

Keeping Eri, yourself and the whole family in my thoughts and prayers. Eri has been through so much already and she's so young.

Take good care!

[TenderVittleS]

Wishing your family peace and a healthy New Year and prayers for Eri. God Bless.

[Eri's mom]

Hi all...
Thank you all so much for your kind words and prayers...they help more than you know!

OK, I got back there by 10 this morning, maybe 10:30...she hadn't slept much and she still looked all puffy and her splotches were still really visible.
Her bgl went to 75, and she was still on ice chips and then, ppl came around handing out gifts...Eri asked for just a cup of water...lol...but they gave her a soccer ball(she loves soccer, wants to play again). THEN, if that wasn't cool enough, two of the Buffalo Sabres were there and she got autographed pics written out to her and a photo...
Well, we finally THOUGHT she was doing better and all the sudden that stupid pain in her abdomen started. They had to give her more pain meds and then she slept, thank God. The endo's showed up then and they think she is isulin resistant. They said it makes the most sense...and they actually were really nice saying I was taking great care of her...amazing.
They also want her to see a doc about anti-anxiety meds...they think that has something to do with it as well.
Ok, here's a pic of Eri w/ the Sabres...she looks horrible and would freak out if she knew I posted it...lol. You can see how swollen she is and how out of it she looks...
http://i4.photobucket.com/albums/y139/Crow309/IMG_0227.jpg

She tried to eat, but she got sick(thank God she didn't throw up)...and then later she was able to get down a popsicle and a piece of wheat bread. Her bgl went down to 69, but then it shot up to 149. So, she is now out of ICU and in a freshly painted room on the one floor.
I feel terrible for leaving her there, but I hurt so bad all over, feel like I'm getting sick b/c I was freezing all day, but I'll get over it. I'll be there bright and early tomorrow bf the docs do rounds.

So, now I have a question: they mentioned changing her regimine...said that the pump probably won't work too well b/c of the resistance and what not, so does anyone have any ideas as to what they will do with her?
The weird thing(and she would KILL me if she knew I was saying this) is that every time we've been in w/ her DKA(especially the past year), it has been 2 weeks after her period.

OK, I'm probably not even making much sense...I'm wiped out. I will say she was actually really sweet and wanted me by her at all times today/night.

I'll update more when I find out what's going on. They are hoping she will be able to come home tomorrow...who knows....we have to see how her bgl's and stomach do.

OK, serioulsy shutting up!
Thanks and God bless :)

[Funnygrl]

Is she on V10? I just got off there. The new floors on V10 are definitely nice.

Glad she's doing better.

[SueM]

Robin have you asked the Drs if there is a chance she is allergic to the Lantus? There is another lad who used to post on this board who's blood sugars would go through the roof then bottom out He had something like 14 DKA within a short period of time.
He is now on different insulins. No more DKA or violent swings in bs or mood swings.
His control is far from ideal now but most of that is down to him from reading between the lines :(
RE the periods mention it to the Drs if there is a set pattern it all helps sort out this mess.
Hope Eri feels better soon.

[ant hill]

Hey! It's good that she is doing well, Also a great picture too, So this is great news and now a better Christmas to Eri and mom.
So a great Christmas for everyone to us and mom & daughter. :T :D

[Eri's mom]

We actually did ask if she could be allergic to the Lantus...I am going to get more answers today. We met w/ one of the endo's that we have never met. She was really nice.

Yes, she's on V10...it looks great :) That was the first floor they ever put her on when we moved up here(first went in 1/05)...they said they were doing a lot of work to it, and they really have. The ICU filled up really quick...

We appreciate all the well wishes.
I'm leaving to go up there in about 15 minutes :)

[caswellhb]

Robin, get them to do some hormone testing. If this is happening mid-cycle it could well be that she producing too much of a hormone and it is sending her numbers up.
I'm so glad she is doing better. She looks like a lovely young lady.
Keeping you all in my thoughts.

Heather.

[Lizzy]

What a great picture and Eri is beautiful even if she isn't feeling her best. I hope they solve the problems very soon.

[Cyborg]

Glad to hear she is feeling a little bit better. I'm afraid the doctors are just guessing at the problem. The pain in her abdomen should be looked into further by a specialist.

The comment about this being caused by insulin resistance and the need to change from the pump I think is very wrong. I would get a second or third opinion from an endocrinologist. High insulin resistance never interfered with the control I get from pumping and it certainly never shot my bg up to 400! Perhaps a bad set, but I really think something else is happening here...

Best wishes. :flowers:

[Funnygrl]

Cyborg- she's not pumping, and I believe the pain was evaluated by a specialist and dx'ed as pancreatitis, which actually could have caused the DKA.

[andypoo]

I hope she gets better soon,she's an adorable looking little girl,looks a little like my oldest granddaughter,who's soon to be thirteen. She'll be better before you know it,hang in there!

[Altair]

The endo's showed up then and they think she is isulin resistant. So, now I have a question: they mentioned changing her regimine...said that the pump probably won't work too well b/c of the resistance and what not, so does anyone have any ideas as to what they will do with her?


I hate to even offer my opinion against that of an endo, but from looking at your old posts your daugther's symptoms seem unusual enough in her bf fluctuations that I wonder if something more is going on than just type 1 plus insulin resistance.

For example, you've written about how her bg will spike up dramatically (above 600 IIRC) late at night and early in the morning even when she hasn't had anything to eat. That almost sounds like some kind of issue with the liver/gluconeogenesis more so than just insulin resistance along with Type 1.

Massive amounts of glucose are being released in her bloodstream even when it can't be accounted for by eating (correct me if I'm wrong in my understanding of her symptoms). That suggests gluconeogenesis might be the cause- some especially severe version of the dawn phenomemon. But what do I know? Just trying to think of something.

I do know that your daughter is very cute and you seem like a great mom- hang in there.

[BlueSky]

... the pain was evaluated by a specialist and dx'ed as pancreatitis, which actually could have caused the DKA.
It sounds like blood glucose was fine just hours earlier. And she injects insulin .... So how could pancreatitis have caused DKA?

[JediSkipdogg]

Wow, sorry to hear about everything going on. Since you've been in the area up there have you always gone to the same hospital? I just wonder if maybe going somewhere else for some tests would be more helpful since they can't seem to figure out what is causing all her problems.

My prayers are with you and your family.

[Alice]

Thanks for keeping us up to date...Eri never knew how many "aunts & uncles" she had!!!

I'm sure that the staff there is very capable. But, I keep wishing you could get her to the Joslin Clinic for further evaluation. They really helped a family that I know from Oklahoma that dealt with a different, yet equally frustrating situation...

My best to your family...love the photo! I think she looks rather pulled together considering what she's been through! Reminds me of when my mouth was packed after having my wisdom teeth removed (college years) and my dentist asked me if I wanted to go out with his intern...who was standing over my swollen face! I just snorted at them both!

[Eri's mom]

You all so so amazing :) Thank you for everything!...and Eri is home! She did have ketones this morning and her bgl shot up to 254, but it went down by lunch...with no ketones :)

Let's see, the endo today said that w/ the insulin resistance, that the lantus is the best bet for her, and to work towards going on the pump.

They think that some has to do w/ ger panic anxiety, and told me that when we get to FL to have a doc perscribe her something for it. It seems as though that when her heart starts racing, she starts panicing more and ends up puking.

I did ask, and the resident also asked, why they weren't running a CT or ultrasound on her abdomen. It is swollen right now, she had some sushi and broth, but, as the endo said and one other resident, it is gastritis.
When we get to FL I will request a thorough run through of her.
Oh, I was also told that between the ages of 11&17 are the worst.

I do want her checked out for the horomone testing as well. We'll keep her old docs in FL busy when we get back... :)

Oh, and yes, for the past three years, since she has had so many hospital visits, she has been to the same hospital. A lot of the staff remembers her every time we go back.

[gettingby]

Robin, I'm glad to hear that Eri is home. Now, get back to Florida. It seems like her problems have gotten worse since you moved to New York. No offense to anyone who lives in that state. :)

[mg_2204]

a great mom-

I agree! Eri has a great mom who cares and looks after her. That's a blessing.

I'm happy Eri is finally home and hoping your family and yourself will be able to have a good Christmas and some peace of mind. Lots of good health for Eri in 2008!!! :)

[lisa821]

My gosh, what a nightmare! I'm so sorry you all have been going through this.

I wonder if it could have something to do with her ovaries? When my appendix burst a few years ago and no one could seem to figure out what was going on, one of the first tests they ran, believe it or not, was an ultrasound on my ovaries, thinking it was a cyst due to the pain in my abdomen. When I read Heather's suggestion about Eri getting hormone testing, it reminded me of that ultrasound. I'm grasping at straws here, but I thought I'd throw the info your way.

She is an adorable girl. Beautiful eyes.

~Lisa

[TenderVittleS]

She looks 1000x times better than me when I was diagnosed! I think we were about the same age too. Hope she continues to get better. The anxiety will always be there. The body gets conflicting signals and anxiety is the result. Hope your Christmas turns out okay. Through Christ all things are possible.

[davef]

You guys have really been throught the mill, it's great to hear that Eri's back home, often the best cure!

My mother suffered from panic/anxiety attacks (not sure if that's what Eri is getting), she say somebody about them and he felt that it was a delayed reaction to my Father's heart attack followed by quadruple bypass 4 months earlier. Coincidentally my parents were in Florida when it happened and he was rushed to Broward Medical Center. The medical staff were the best, so here's hoping that the Florida sun and medical people will help you all get to the bottom of this.

Eri sounds like a wonderful girl and I'm sure she appreciates just how great her mom is!

Wishing you and yours a very happy and peaceful Christmas & a healthy New Year.

[Eri's mom]

Thanks all :)

Yeah, after almost 8 yrs(hard to believe it will be 8 yrs we've been dealing w/ this on 1/3!)...they finally come up w/ not just the "oh, she's a brittle diabetic" but the insulin resistance.

They've known about the panic anxiety disorder since she was 11...they've always told her to basically mediatate(she is calmed by water, but not enough latley). Basically, they told us to wait until we move so she can have the docs there follow her.

She sorta flipped on me when she saw I posted that pic...lol...oh well, at least I didn't take a pic while she was throwing up, right? (and I don't think she's ever seen the other pics I posted a few years ago when she was out of it in the hospital...lol).

Anyhow, she's still home sick...this cold and stomach pain she has is kicking her butt, and I MAY have to take her dad back to the hospital bc of his chest pain and breathing. They warned us if he was to get pneumonia, he would be in the hospital for a while...UGH...so definitely believing that it is NOT pneumonia and he'll be fine. I think it's just all backdrip, but both he and Eri are concerned for themselves(I am, too) b/c one of the kids in ICU right next to her had pneumonia.

We shall see. I am waiting for a return call from one of the nurses from his doctor.
I just have to believe that 2008 will be a LOT better!

[caswellhb]

You and your family remain in my thoughts.
I so hope things get better for you all soon.

Heather.

[Funnygrl]

It sounds like blood glucose was fine just hours earlier. And she injects insulin .... So how could pancreatitis have caused DKA?
It's an inflammation. Inflammation = raised glucose.

Robin, are you actually giving her her shots yourself? Something still seems fishy here. I feel like they're missing something, still.

[morrisma]

Yikes, what a tough week!

Years ago, I worked with a lady (much older than eri) who had the devil of a time convincing her endo (top guy at a local hospital in Wilm, DE) that her cycle played havoc with her insulin needs and bg readings. She had to graph everything in excel for several cycles and through several office visits before she was taken seriously.

You may want to do the same thing to see if there really is a correlation. If I remember correctly, my friend's insulin resistance went up dramatically during part of her cycle. If you know how to do it, graph bg's and total insulin each day through as many cycles as you can muster the energy and see if that shows anything.

BTW, Eri looks great in the picture. If that's a bad one, she's doing wonderfully!
Luck,
Mike

[Eri's mom]

Yes, I give Eri her shots or I draw the insulin and watch her inject so I can dispose of the needle(s).

As for the hormones, I can't wait to see how the testing turns out...hopefully w/in the next few months.

[mortis505]

Just out of curiosity, has Eri been checked for endometriosis, or other gynecological issues? I only as because one of my co-workers has this.

[momof1n1onway]

Hi eri's mom i'm a new member. I was reading the story about your daughter my lance how her blood sugar went up so fast. A few years ago i was put in the hospital for ketonacidosis. That was really a bad experience and never want to go through that again. But before i had that episode i could go the day without insulin and be fine. After that episode once i'm out of insulin i have to have it right then and there cause i will start throwing up and gettting dehydrated my blood sugars will go sky high.

I'm very sorry to hear about your daughter i hope she is doing better. I will keep her in my prayers.

[michaeldboyer]

We're praying for you and your family!

[Cyborg]

Yes, I give Eri her shots or I draw the insulin and watch her inject so I can dispose of the needle(s).

As for the hormones, I can't wait to see how the testing turns out...hopefully w/in the next few months.

I take it the pump idea never got off the ground?