Beyond frustrated...

[Eri's mom]

Hi again...
Eri finally went back to school today...well, she went in late a bit after 10(her dad took her b/c I was having my stress test)...anyway, she was home b/c she woke up w/ a HI reading again and high ketones and then she dropped down a bit and was freaking b/c she missed Fri/Mon and Tuesday. She also has doctor appointments tomorrow, next Monday(gastric emptying), Tuesday and Wednesday(that's just this and next week)...
So, the school nurse just called. Eri is "HI" again and has high ketones again...major headache...she'll be home in about 20 minutes...and I am waiting for Endo to get back to me. OK, they just did. She is to get an extra 7 units when she gets home and then I have to call them by 4:30 to let them know if she still has ketones and we go from there. I'm so tired of the hospital. She's tired of the hospital. It's like she isn't getting better.
I'm so sick of her being sick, even though we know of the throat infection and all that, I feel like a total loser, like I'm letting her down. I watch her like a hawk and she watches herself. She told me she is so tired of being sick, my mom told me that she said the same thing to her when she spoke to her the other day, the "Nana, I'm just so tired of not feeling well. Is it always the middle child who gets sick?"(family thing)...
Thing is, she hasn't been in DKA the past couple of times we were at the hospital(readings 898 and 593...AFTER insulin)...they even just told me they can't understand her body.
The nurse said she drank a few waters there and she's gone through ...my guess...about 20 water bottles since late last night here. The ketones don't want to go away.(and, like I said, I AM watching what she is eating, she's by me constantly).

Any thoughts on this? I know infection comes into play, but this is getting ridiculous...even for the docs to say they don't understand her body(I'm repeating myself, aren't I?)

[duck]

Have you ever considered symlin? It's a bit off-topic, but at this point some creative thinking may be needed...

[SueM]

Have you ever considered symlin? It's a bit off-topic, but at this point some creative thinking may be needed...
symlin is for over 18's Eri is a school child.Also with all Eri's medical problems she would not be allowed to use it even if she was old enough.

Robin have you tried a new bottle of insulin just in case there is a problem with the one you are using for Eri?

This is prob teaching grandma to suck eggs idea but also has Eri's long acting been increased as well while she has the infection?
Hope she feels better soon.

[Eri's mom]

Thanks for the responses...

Yes, have most definitely tried new insulin bottles. There are times when she goes "somewhat normal"...but as of late, it's been so high, although she was down to 155 at one point.
All these "hi's" are starting to really concern me. I just got off the phone w/ the on call endo and she had me give Eri an extra 7 units(she normally gets 12 units of novolog for dinner)...and I'm to call back if she still has ketones in 2 hours. If not, then I have to call b/f she goes to bed for a different bedtime dosage. She also told me to get her excederine for migraines. I have to go pick up her prilosec script b/c they were out of it until today after 4...so that's no biggie.
Her new endo appt. is this coming Tuesday, and I reminded them that the last time we were there in July, they never changed her dosage. She has lost weight again, so she is actually lower than she was 6 months ago...but I still think w/ the stress of being sick(throat) and adolescence w/in it's own, that has to have something to do with it. I don't know, I'm probably just pulling at straws praying for some easy answer.
I wonder if having the tonsils taken out earlier will help to get rid of that infection?

Ahhh...going crazy...she's actually quite miserable right now and is to the point of arguing about EVERYTHING.

[kiwi]

What is her basal dose, and what type of insulin is she using?
I know that when my basal is out, no amount of bolus will shift my high numbers. I had an experience with very high numbers as a result of pre drawing lantus into plastic syringes. (My daughter is also type 1 so we shared the vial). I thought I could simply take along 5 days of pre drawn lantus to my conference. Each day my numbers climbed higher and higher. I came home, thought the lantus and humalog were both expired and started a new one. Had to go away again in 3 days for 4 days, so did the same thing. By now I was super high, but at least I was at a Diabetic Conference, so could get all kinds of great answers!! I was now feeling really sick, and was giving myself what should have been lethal amounts of rapid to absolutely no avail. And I was only eating 15gms of carbs per meal to try and get the numbers down.
I learnt how to manage high numbers. Firstly get your basal working. Increase by 1/2 unit until the morning numbers are better.
Then drink electroylte replacement drinks to rehydrate. Use the ones without carbs, but those with carbs will do if you can't find the other ones. Drinking copious amounts of water will cause you to super saturate and this is as bad as being dehydrated. For us, this is even more stress on our bodies and will cause the counter regulatory hormones to be released and therefore raise our levels. When we are high and making ketones our electrolytes go out of whack and these can be dangerous to our health especially if potassium is out as this causes heart arrythmias. Water does not replace the electrolytes, and when you are so sick you need electrolytes. The non carb ones are the best as they won't raise your numbers!.
I have since switched to Levemir as Lantus was not holding for 24 hours. Levermir is designed to be taken 2x a day which is working so amazingly well for me. Well worth the extra jab. Plus it is in a pen and doesn't need to be refridgerated. It is also cheaper than Lantus!
So sorry to read about Eri's troubles. I can totally empathise your frustrations.
Hope she feels better soon.

[Eri's mom]

Let's see...they took her off lantus when she went into DKA a year ago May. They had started her on the lantus and novolog in January of '05.
Anyway, now she is STILL on the 60grams of carbs for breakfast, lunch and dinner(she barely gets that for breakfast and lunch) and 45 grams for her afternoon snack and bedtime snack. Like she gets that as well!
Anyway, they have her on 11novolog and 21NPH for breakfast, 3 novolog after school, 10 novolog for dinner and 14NPH for bedtime. I think they are way off and I know that we'll(the one endo and I) will probably go head to head w/ switching her to lantus again(she was going on the pump b/f we moved here in the end of '04 but they cancelled that out up here b/c they want her A1c below 8%...well, ONE endo does, 3 of the others (out of I don't know how many) said the pump would be fine, but the one saying NO is the chief...UGH!
Soooooo...she's also drinking plenty of Propel(they only allow her to drink that instead of gatorade or powerade...they totally forbade her from drinking either).

I FINALLY got her prevacid. OHMEGEEE...holy scripts...it took 2 days to get it (says to give at least 3 days) and for 60 pills, $356.09! I had sticker shock. Thank GOD for small co-pays!
Hopefully this stuff will help(w/ the price of it, it should!)

I am now waiting for her to take her ketones, of COURSE she doesn't have to go, which I find amazing since she drank 2 propels and 2 waters AND a diet snapple. She's a camel.

[am1977]

Please, Please, do not beat yourself up. You are doing the best you can for that girl and that's all you can do... I know your a Mom- and mom's are known to have feelings of guilt from time to time, but your daughter is very lucky to have a mother who cares so much about her...

This is "beyond frustrating". When I saw the title of your post, I thought "OH NO! :( ". THere's no reason that this little girl should need to deal with all this at this stage of her life (or any stage for that matter).

As I've posted before, it almost sounds like she isn't even taking her insulin for her to be having numbers this extreme. But I know you said that you know she takes it. However, sometimes desperate times call for desperate measures. I know that you trust your daughter, but perhaps giving her a break from giving herself injections and having you take over really is in order. I just think that would be the best way to ensure that insulin is definitely being administered and the break may be good for Eri anyway.

Also, I know that Eri has other health considerations, but it does sound like something else is going on. It may not be my place to say this, but it sounds to me like her medical team isn't doing all they can for her. Yeah, they can change up her insulin, but it seems like they are just taking wild guesses here. No, Diabetes isn't an exact science, but I think there may be other medical providers out there who could possibly give her better care. In addition, it might be in Eri's best interest to find a doctor who will allow her to start on the pump. I think it's ridiculous that they won't let her try it- frankly, I think it could only possibly help her... Plus, it would give her the freedom and flexibility that shots don't give her. And she's a kid, every kid should have that! :top: Please keep that in consideration.

I hope I am not overstepping here, I apologize if I am, but it just breaks my heart to hear her struggling like this :bawling:. Eri should be able to be a normal, healthy kid without dealing with a lot of these health issues.

I think you have the toughest job in the world- being a mom- and it's especially hard having a child with a chronic disease like this one. I give you a world of credit for doing what you do for your daughter.

Hang in there :flowers:

[parrotletzoo]

maybe eri needs a new dr, because obviously she isnt getting the care she needs or she wouldnt be having HI's all the time. Dr would be working with you and her to get her insulin/carb ratio and basals straightend out better.

i drive 5hrs to see my drs. so please dont tell me there arent anymore in your area. your kids health is worth the drive if you ahve to go to another town.

[duck]

Robin, 60 grams seems to me to be a lot of carbs...and coming from me, I think that should say something. Have you ever tried cutting back? I'm not saying permanently, she is a growing girl after all, but "just to see" if it helps?

Everytime I read your posts, I wish I could drive up and spend a week with you guys...I hate to admit it, but I'm intrigued by all this. Obviously, puberty/hormones aren't helping a dang thing, but there's this part of me that thinks another set of eyes could help. *sigh* Hang in there. I know you're not going to bail, but I want to offer the encouragement anyway to you and Eri.

I can't believe symlin couldn't be considered in circumstances like this. I do know that childrenwithdiabetes has recommended in the past that pubescent teens consider drugs typically used for Type-2's that both supress the liver's release of glucose and help onboard insulin work better. I can find these links if you need them so you can take them to your docs for consideration.

[gettingby]

I hate that Eri must endure all of this (and that you must, too). :frown:
Robin, don't beat yourself up over this. You are doing the best you can. You've always done the best, IMHO. Hang in there and remember that we love you, Eri, Elle, Wil, and hubby (did I miss anyone? am I even close? lol).:)

[Cinnabon]

Robin,
We r here to hear all of your ranting and raving. Only thing that really comes to my mind is the age!. Eri is "hormone" sliding right now. Her body is going thru major changes. Please keep up updated on Eri. She is in my prayers, always as well as U! I just lit up a candle for her.

Great big hug for U!!!

[Eri's mom]

Thanks all :)
I am always with her when she takes her sugar and gives her shots. Lately, I've been doing it for her b/c she's so sore.
Here's the weird thing w/ the newest reading...she's 137(YEA!) but w/ moderate to high ketones...and that was tested w/ TWO different bottles of NEW ketostix!
The endo on call suggested I give her 2units of novolog along w/ her 14NPH tonight and to just keep checking her throughout the night to make sure she doesn't go too low.

Believe me, I would drive any amount of hours to get her to another team. It's annoying because as I have said, 3 of the endos suggest the pump and the chief is nixing it. She wants her below the 8%...and that won't happen this time(I voiced that today to the nurse)...I would LOVE to go back to FL and have her see her other endo there. She LOVED him...he was awesome :)

I will have to write down symline to remind myself to ask the endo (whichever one we end up with Tuesday!)..and see what they say.

Also, it is supreme torture to see that pump sitting in the hall closet w/ all her other supplies NOT being used. I want to slap her dad silly for moving us when he did b/c she was just getting ready for the pump then(in the end of '04).

I hate being so out of control b/c the docs seem to hate listening to parents "who think they know more than the doctors b/c they spend too much time on the net"...uh, excuse me, I like to be informed...maybe brainstorming would help, but no, a lot of the docs have that "God complex" and feel too threatened when a parent throws something out there, know what I mean?

Tomorrow is the appointment w/ her ped...Tuesday the endo...praying I just get an answer somewhere.

[Funnygrl]

There is a good peds endo in Niagara Falls (US) that I know is very pump friendly.

[JediSkipdogg]

Wow, you only need a stress test? I'm amazed you don't need hair transplants, stress tests, a 5 year vacation...

I wonder if Lantus would work better for her than NPH. I know they took her off of it, but some people do have different reactions to different insulins. Maybe you could also bring up Levemir (I think that's the 3rd long acting.)

As for the Ketones while running normal...keep in mind it takes quite a while (about 6 hours) to flush ketones out of the body. So they could be in there from her previously running high. Also, it could be something else with her body breaking down the fat and producing those ketones maybe if she isn't eating enough carbs for energy.

Whatever it is, good luck with it all. When you want to get rid of her and take a vacation, I'm sure someone here will deal with her for a week.

[gettingby]

Robin, how is she today?
You know that I would take her in for you to have a vacation. :)

[Cyborg]

IMO, you should find a new doctor with will help you to obtain a pump. I can't understand why these quacks require you to get your bg under control before they will let you have a tool designed specifically for that. Especially since we are talking about a kid...

[Eri's mom]

Let's see...
Eri's bgl remained pretty "ok" considering what she has been through the night(I actually only got up once, I was exhausted, horrid me!)...then, when I checked her again at 6, she was 235, and then, at 7:15(when she gets her shots) she was up to 357...and hadn't eaten yet. Moderate ketones. Annoying as heck. Puberty sucks! We see her ped at 9:45 this morning. Yea, more driving all over and in the nice, chilly rain(I'm still thin blooded from FL I guess!). It doesn't help that she'll be leaving right from swimming ...I'll bring her thicker hoodie.
As for the carbs they are allowing her, I keep telling them that I think that is a lot, so does she. She doesn't eat that much...she may for ONE meal a day, but her breakfast, lunch and snack(s)...nowhere near...except for one in a great while. They say she doesn't have to eat the 60grams of carbs in one meal, do the make up thing...but she doesn't the majority of the time. Even my dad goes ballistic when he finds out they haven't changed that(since she was dx'd!). Believe me, we question it. It didn't matter so much when she was on the lantus and novolog and was bolusing more...and it's amazing at how much she has become so helpful w/ me in the management of the diabetes. She's helped to an extent b/f, not, having her test for ketones, half the time I don't even ask and she just does it...she grabs her kit and sits next to me and tests, she is totally watching what she eats and reads all the labels in the store more(takes a while to shop sometimes)...

Believe it or not, another doc was telling me about the doctor in the Falls but she didn't remember his name(I"ll just look it up in a phone book)...BUT, she said she's not sure Eri is old enough. In FL, they at least wanted to wait until 12, (to go beyond pediatric)...so she is 13, I'll beg him if I have to.

A vacation sounds SOOO good...even if it was just from NOT having to be at the hospital once a week or w/ doctors at all...for at least a month. The upcoming month(including this week) I am bombarded w/ appointments and I need to figure out when I can schedule to have the last 2 wisdom teeth pulled by the oral surgeon b/c they are all weirdly placed(one's sideways) and so close to nerves. FUN! Bottom jaw, too, so that should be interesting. Top one was no problem(ok, the dry socket wasn't pleasant, but that's my fault for not keeping the guaze in)

Stress test ...at least I made it there! Oddly, it takes them forever to get my bp...took only 5 tries this time :)...and only 2 different nurses!
I guess I pretty much roll w/ the punches when it comes to stress. I refuse to get sick again like I was in '03 and '04...that was so NOT fun. GP sucks...and the endo on call last night(and the ENT) both thought I was diabetic as well b/c of it.

Shuttin' up!

[gettingby]

Wow Robin. Remember, me taking her in is a standing offer. LOL.

[Eri's mom]

IMO, you should find a new doctor with will help you to obtain a pump. I can't understand why these quacks require you to get your bg under control before they will let you have a tool designed specifically for that. Especially since we are talking about a kid...


My thoughts EXACTLY!
I mean, first I'm told we'll get it, then she refers Eri to the shrink, then she says she isn't responsible enough(ok, like she WANTED to be in DKA from food poisoning)...and then the same doc says that it's hard to get teens to 8% let alone BELOW it...and yet I thought the pump would be more helpful but she's always telling me it's not the cure(I know that, but it's worth a try since we've been doing everything else)...and even more frustrating when the other docs say she should go on it.

[JediSkipdogg]

My thoughts EXACTLY!
I mean, first I'm told we'll get it, then she refers Eri to the shrink, then she says she isn't responsible enough(ok, like she WANTED to be in DKA from food poisoning)...and then the same doc says that it's hard to get teens to 8% let alone BELOW it...and yet I thought the pump would be more helpful but she's always telling me it's not the cure(I know that, but it's worth a try since we've been doing everything else)...and even more frustrating when the other docs say she should go on it.

Ever thought of moving to Cincinnati? I'll get you a pump and a great Endo team at one of the top 10 ped hospital in the country, Cincinnati Children's Hospital.

[Dewey]

Nothing is more frustrating than a health care team (or "team" of one, even) who's not on the same page with one another or in this case, the family/parents. I think a switch is definitely in order (but you don't need to go to Cincinnati to make the change). I've personally found a great doctor in FL, and I'm sure there are some in NY, too. I know how frustrating this must be for you, Robin. On top of Eri experiencing all sorts of bad issues, it makes it even worse to not have the doctor on Your side. :( It sounds like my old endo, before I switched to a better one & got on the pump..."You're not being enthusiastic enough! (though I was testing 8 times a day!)...We're going to have to fudge your records in order to get you on the pump." (though, in that situation, he wanted to make them look higher at that time. I could go on...). I say switch endos if at all possible & don't look back. Hopefully, Eri will get the care & attention she needs from a health care team who puts its patients' needs first.

[duck]

My thoughts EXACTLY!
I mean, first I'm told we'll get it, then she refers Eri to the shrink, then she says she isn't responsible enough(ok, like she WANTED to be in DKA from food poisoning)...and then the same doc says that it's hard to get teens to 8% let alone BELOW it...and yet I thought the pump would be more helpful but she's always telling me it's not the cure(I know that, but it's worth a try since we've been doing everything else)...and even more frustrating when the other docs say she should go on it.

Ask to speak to the chief, Robin. Ask that one of the "supportive" endos be there too, you should request a conference. And then ask the "chief" pointedly what his medical reasoning for not allowing her on the pump is--when he is done, ask him to put it in writing. And then ask him directly how can he require that she get under control BEFORE approving a device whose very function is to allow diabetics better control?

Egad, good luck. If nothing else, at least this makes me feel better about my lot in life (small consolation to you).

[Funnygrl]

My thoughts EXACTLY!
I mean, first I'm told we'll get it, then she refers Eri to the shrink, then she says she isn't responsible enough(ok, like she WANTED to be in DKA from food poisoning)...and then the same doc says that it's hard to get teens to 8% let alone BELOW it...and yet I thought the pump would be more helpful but she's always telling me it's not the cure(I know that, but it's worth a try since we've been doing everything else)...and even more frustrating when the other docs say she should go on it.
So leave the endo at CHOB, and go to the one in Niagara Falls. I could get you his number if you want.

At the same time, I have to see some of the reasoning for with holding the pump right now. The pump increases the risk for DKA. Eri can't seem to stay out of near-DKA states for more than a week at a time as it is. I suspect Eri needs WAY more basal insulin.

[Miss Jade]

As for the Ketones while running normal...keep in mind it takes quite a while (about 6 hours) to flush ketones out of the body. So they could be in there from her previously running high. Also, it could be something else with her body breaking down the fat and producing those ketones maybe if she isn't eating enough carbs for energy.

Actually that is a good point...has anyone ever looked at testing (i'm not sure what that involves) to see if she is a phenylketonuric?

I only ask as it is another condition that could explain the production of ketones - especially if she drinks sodas etc containing phenylalanine.

Just brainstorming outloud. :)

[Eri's mom]

OK...we just got back from her pediatrician(now, to let you know what kind of day this has been...Eri's sugars and ketones continue to be about the same, then, I'm supposed to pick her up at 9:15, well, my son's counselor called and had a 30minute conversation with me, rushed to get Eri, got on the 33 and then, right b/f I got off there I thought we were hydroplaning...no, my stupid tire blew!!!...so, we were late and they rescheduled her for 11:45)...
Now...there, do the entire physical thing again, and then she did a strep and mono test again...negative. She then sent us for bloodwork...CBC, Epstein Barr, mono and 4 other ones...can't remember all the names and she faxed in the slip so I couldn't read it. She has on her paper as we leave, chronic pharyngitis, fatigue/lethargy...b/c Eri fell asleep sitting up waiting for the doc.
I'm just praying she's clear of any other type of disease...you know that look docs can give you?

Anyhow, I would LOVE the name and number of that endo in Niagara Falls... :)

I'm going to talk to the chief(she usually pops her head in when we are there) and I'll do just that, ask her to write it down...
Yes, true, w/ as close to DKA as Eri has been lately, I can somewhat see where that COULD go.
She gave up soda and drinks only propel or water or once in a while, diet snapple(peach)...which, I just noticed, contains phenylalanine....UGH!

Thank you so much everyone for all your input and everything!
I will update w/ her results as I get them!
You all are so awesome, thank you!

[Diana]

Hmm, I wish you could get things under some semblance of control, for both your sakes. I had a thought when reading your post, and I could be way out, but I'll say it anyway.

When I was Eri's age, I would sometimes fake ketones. Is she doing urine ketone tests? I used to take a bottle of nail polish remover in with me, and put a bit on the ketone strip. Wham! huge ketones. And, for that matter, I used to fake high and low blood sugars too. I'd mix a bit of spit with the blood to get a low result, and rub icing sugar on my finger to get a high one. I dont know if thats even possible with the new meters nowdays, but it worked for me with the good old glucotrend meter.

I'm probably completely wrong, but I thought I might as well say it anyway. Please dont take it the wrong way, but teenagers do funny things sometimes. :dontknow:

Has Eri ever been kept in hospital to be stabilised? That is, not just treated for DKA, but kept in for a week or a period of time, and given insulin by normal injection on a fixed schedual, specific foods at certain times, activity and everything else controlled? NOT on an IV for glucose or insulin, but just what you would be doing at home? In a best case scenario her bloodsugars would come under control and you could try to figure out what on earth is going on that she cant have 'normal' levels at home. If that doesnt happen, at least you will have proof for the docs that despite "expert" care and supervision, those bloodsugars arent doing normal things! If they could see that its not anything on your or Eri's part that is causing the fluctuations, maybe they would be more open to trying different therapies?

My only other thought is, is there anything else that could be causing all this? I have seen in your past posts that Eri has been prescribed various meds for this and that, could anything be interacting? Is she taking any non prescribed herbal/vitamin/OTC stuff that could possibly have an effect? Im sure you have already checked this out with the docs, but with so many different specialists involved in her care, maybe a wire has gotten crossed somewhere?

Good luck, and I truly hope a solution is in the near future for you both.

[TenderVittleS]

If she's taking medicine for her infection then that;s probably the problem/ No matter how much insulin you take it will not work because of certain medicines, I think penicillin and Vicodin are the worst, also elevation can play a role in high BS, hope this helps.

[Eri's mom]

Thanks for the input...
No, she wouldn't elevate her ketones b/c she loathes the hospital and becomes worse while there, plus, even if we are out and about or at the docs office or hospital and she had checked her ketones at home, they are still the same...but a good thing to remember...

She's not on any meds for this infection.
The only thing she is taking other than her insulin is previcid(15mg/2x's per day) and either advil or exedrin migraine.

[Funnygrl]

Advil and Excedrin both make my stomach waaaayyyy worse. Might want to consider looking at alternative migraine meds.