Update on Eri

[Eri's mom]

Hi all :)

First off, thank you all for all your encouragement and prayers and thoughts :)
We really appreciate it!!!

OK, I didn't get to post after we had our visit w/ the endo(Eri had the computer so she could watch some dvds)....

Well, one of her endo's came in, and told us that Eri was really close to death when she came in, her carbon dioxide was down lower than 5, and it's supposed to be at 25, her potassium was out of whack(of course), and she was on her way back in b/c Eri was doing so bad, but her numbers started to get better, so that's why she let the other docs deal w/it. She also said that they are taking her OFF the lantus and humalog regimine(I'm not happy w/ that) b/c they think that 5(+) shots a day are stressful(Eri can care less about shots)...also, b/c her A1c is 10.4...I told them to remember that she has PAD and gastritis, plus recently got over a sinus and ear infection. They don't think we are controlling her well, but we are counting carbs, bolusing and checking her sugars...and they have been a lot better than just the NPH and humalog routine they want her on.
Well, they started her on THAT yesterday, and her sugars have been 288 and upwards into the 300's, AFTER we had her down to 141 yesterday morning. She(endo) said the pump was out of the question. I just do NOT understand all this. Can't they see there are other contributing factors to this? I mean, it's not like we have NOT given her insulin and have NOT watched her and taken care of this w/ her...they can not see her body is just going through changes, and the past year has been totally stressful.
I'm not saying I know it all, but I do know that my daughter has been doing great w/ the lantus, and we were REALLY looking forward to the pump. It's like a never ending battle w/ this. I'm so frustrated...I feel as though I am the one in the wrong, but I know the lantus was working a LOT better w/ her(and I will admit, this past month has been bumpy due to the illnesses and what has been going on at school and now all this)...but I KNOW the lantus was making a difference. Why are some doc's so determined not to let her go on the pump?
She's supposed to get another echocardiogram today, I pray they check out her stomach and do SOMETHING for the PAD, b/c that triggers a LOT of her vomiting...anxiety stinks. I KNOW that is contributing to higher readings between those two other things.

OK...I'm sorry for venting, sorry if I sound really stupid, it's just frustration...waiting for her sugar to get to normal while in here, and finding the right regimine for her.

Thanks again all :)

[nantomsuethom]

Robin, I am so glad to hear Eri is feeling better!

I am also sorry to hear that they changed her insulin regimen and not allowing her to be on the pump.

You all have been through so much, even before your move. Soon school will be out and hopefully you will get the much needed rest/break that you all need.

I continue to pray for you and your family.

[am1977]

Robin,
Thanks so much for letting us know how Eri is doing, I know we were all wondering and hoping that she is doing better. It sounds like her wanting to watch DVDs is a good sign that she is on the mend ;). And that is really good to hear :thumbsup: .

I am very shocked that they want to take her off the Lantus/Humalog combination. Most doctors, I think, would prefer this combination b/c of how well it works to control blood sugars. Yes, it means taking many shots a day, but if Eri doesn't mind shots, what's the problem? It's more important to have good control than to worry about an extra shot. I'm guessing they think the pump is too much for Eri too....too much testing, too much prep work, too much involved in general. Yes, there is some work involved, but once she gets used to it, it can make her life easier, not harder, for the most part. And it could really help her gain control, more importantly.
I understand your frustration completely. You did see a noticable difference with her sugars on Lantus, and to go back to NPH is like taking a step backwards. If the doctor doesn't see that, I would switch doctors. Doctors are supposed to help and work with their patients, and if that isn't happening then they are not really helping at all.

I hope Eri is feeling better today and continues with recovery... How scary for you both (and your family) to go through all this. But, I think this shows how strong she is. Tell her to keep fighting and get well ASAP :thumbsup:

[Eri's mom]

Thanks Nancy and Andrea :)

That's exactly where my frustration lies...yes, there's been an awful lot going on with Eri, between her half brother, the move, being sick, etc...and school. Not to mention the PAD and gastritis. The pediatrician has said that if the prevacid isn't working as well, then to get her gallbladder checked. They said it's not common, but not UNcommon for a child to have a bad gall bladder. She complains of pain in the right side, like right where my pain was. Oh well...the nurse said the endo should be up a little later. At least no ketones still!!! Third test in a row w/ no ketones...yea!!!

She just got back from the echocardiogram(she said it hurt, that dang right side pain).
The just gave her 18u NPH and 9u of humalog...I do feel like it's taking a step back.
I don't know, I'm not an endocrinologist, but I am her mom and have seen improvement up until this gastritis, especially, kicked in, and her numbers were really good. Maybe the endo will at least hear me out on my views...
I guess I can only pray for that.

Will update after we meet with the endo :)

[HeatherP]

Robin, you have a right to get a copy of everything in her medical file, and to get a second or even third opinion. It may be time to consider doing just that.

I'm certainly not qualified to give medical advice, and I don't know how her other medical conditions would be affected, but the shots don't seem to be working well. If you've already got the pump in your hands (I think you said that before) then why not give it a try? Maybe just for a couple of days on saline to see how it goes?

I can only imagine your fustration. I hope you can find a solution soon so that her difficulties will pass and she can live a more "regular" kid's life!

[camjen1]

Thanks Nancy and Andrea :)

That's exactly where my frustration lies...yes, there's been an awful lot going on with Eri, between her half brother, the move, being sick, etc...and school. Not to mention the PAD and gastritis. The pediatrician has said that if the prevacid isn't working as well, then to get her gallbladder checked. They said it's not common, but not UNcommon for a child to have a bad gall bladder. She complains of pain in the right side, like right where my pain was. Oh well...the nurse said the endo should be up a little later. At least no ketones still!!! Third test in a row w/ no ketones...yea!!!

She just got back from the echocardiogram(she said it hurt, that dang right side pain).
The just gave her 18u NPH and 9u of humalog...I do feel like it's taking a step back.
I don't know, I'm not an endocrinologist, but I am her mom and have seen improvement up until this gastritis, especially, kicked in, and her numbers were really good. Maybe the endo will at least hear me out on my views...
I guess I can only pray for that.

Will update after we meet with the endo :)

Robin,

I am glad she is on her way to getting better. One thing you should do is get a complete medical report after she gets out so you can see for yourself what all the ranges she should have been in. When I was in DKA I recieved my medical records and boy were they a shock. After the above mentioned range for her carbon dioxide I looked at my results and I was sitting at 7. You should find out what her PH Blood was as that is what ultimately determines whether a person is in DKA. Any slight decrease or increase in the PH can make a person really sick. Also what was her sugars upon arrival?

[Eri's mom]

I was told the ph and all that, but they go so fast, it was just a blaze of numbers, she just kept re-iterating her carbon dioxide...
I know when she left for the pediatrician, it was 571, she was HI at the the ER.....
Her echocardiogram results came back...her murmur was shown, or whatever...it's in the lower left chamber of the heart, exactly where my mom's is.

We're home now...she's on novolog and novalin...8 of novolog in the am mixed w/ 18units of novalin before breakfast, then before dinner, 8 units of novolog and at bedtime, 9 units novolin.

Oh....her A1c came back from when they took it Monday...11.1....great, but, she's been sick on and off since January and was dx'd w/ the gastritis, and her anxiety has been hitting a LOT...and we all know that being sick, having anxiety and the gastritis will raise the bg's...they just haven't done anything about the anxiety...they want her to just go through counseling(which we started already)..
Anyhow, that's about the gist of it for now...I get more info as we go along still..
I'm so tired ....have to set my alarm for 3 am so I can check and make sure she's not dropping...they are concerned about hypoglycemia now. No biggie..I wake up at that time anyway if I'm not already awake(have not gone to bed)...

Thank you all so much...
Have a great night, will update w/ how she is doing tomorrow:)
God bless...

[duck]

Get a second opinion even if it costs you real money. Was the endo old(er)? I have found in my most recent dealings with doctors that the old(er) endos are used to dealing with (old)er diabetics who typically were not exposed to "technology" growing up, and therefore there was a greater instance of not catching on with a pump. Kids today, and younger adults seem to be performing better with pumps--I would love to know what MM and Animas have to say about that. ANYWAY, demand a second opinion, a complete review of her records, etc., and keep insisting on a pump--Ask the endo for a good medical reason why Eri should not be on a pump, ask for evidence that pumps are not a better mode of treatment.

good luck!

[Eri's mom]

Yes, this endo was older...has been in endocrinology for 20 yrs or more.
She is TOTALLY against Eri even attempting the pump, doesn't think she is mature enough for it, etc, etc, b/c she let herself(and we let her) get so out of control....

I asked, and I know I keep reiterating this...WHY aren't they taking into consideration that:1) she is totally stressed(labeled w/ stress), 2) has gastritis, 3) has been sick on and off since we got here, and just got over a sinus and ear infection, and 4) had food poisoning? I mean, being sick and stressed rises your BG's, correct? I KNOW she's been stressed...it breaks my heart when I have my 11 yo come up to me and tell me that her heart is racing and hurts and she feels sick, but they don't tel lme what to do for that with her.

Eri goes back on June 2, so then I'll ask for her records....

Thanks agan all :)

[Cinnabon]

I agree with getting a 2nd opinion. I have had my share with Endos that are used to dealing with older patients. Boy, was that a bad experience!!!

[zookeeper671]

Scroll down and look to the left of this page (http://www.pumpwearinc.com/pumppaks.htm). If a 17 month old and 3 year olds can pump, I don't see why Eri shouldn't. I'm surprised that her endo didn't consider that (1)maybe pumping would help her gain better control, and (2)the entire time she's been out of control, she's been on MDI. I feel like saying "duh!" to the docs.

[Eri's mom]

That's how I feel...I mean..it's like COME ON!!!
The thing I can't stand about this novolog and novolin routine is this:
Last night I was just totally worn out and fell asleep on the couch...her dad gave her her bedtime shot(oh yeah, the endo wants US to do ALL the shots and testing, NOT Eri...they don't believe that we've been monitoring her)....anyhow, I said, did you give her the shot, and he said, yes, 9 units of novolog..I said, that was TOTALLY wrong, it's supposed to be the novolin!!! So, he gave her the novolin(her bg was 303)...she ate a jolly rancher, went to bed, her middle of the night reading was 101, then this am it was 167.
The novolog and novolin are just so close together(name wise)...
UGH...can you tell I am a bit frustrated? She was just 267 and we are following everything to the "T"...

I'm shutting up....

[buzzborne]

Robin, feel free to vent all you want, I cant imagine how frustrating all this is for you... My heart goes out to you and your family.

[Eri's mom]

Thanks Sarah...I feel bad venting, but this whole experience, while it was scary as heck, was EXTREMELY frustrating.
It's like, how DARE they accuse us of not monitoring her. Yes, I know her HbA1c was 11.1...but, as I stated b/f...this move TOTALLY stressed her, she's been sick as a dog at least every other week, the PAD and the gastritis does not help(especially w/ vomitting)...and I am told I am not monitoring her? They totally took away all her responsibilites for testing and giving shots...they are treating her(and us) like she is a 2 yo.

Gosh, this frustration is just eating away at me and by taking away HER responsibilty for this is not helping her in any way....

OK, I'll shut up again b/f I really go off and turn this into a novel...lol....

[Belinda]

Get another endo or second opinion. She has the pump (if I remember correctly). Ask them how the heck is she going to learn how to take care of herself if she is not allowed to be accountable. Hats off to you Robin for not losing complete control with them. Hope she is doing better.

[Eri's mom]

Yes, she does have the pump, since, what was it, end of November, beginning of December...
I had to really bite my tongue yesterday, although while the psychiatrist and endo were both there, I DID blurt something out...I guess the looks of shock on my husbands and the docs faces meant I probably should have kept my mouth shut, but it is MY daughter. Yes, I understand that this endo has done this for 20+ yrs, and I have only dealt w/ this for 5 1/2 yrs, but I have learned some things along the way, and I DO know my daughter and the situations going on(oh yeah, keep forgetting the adolescence part too)...

I honestly thought she'd be made more accountable. Not to keep reiterating this, but how is she going to learn anything w/ either me or her dad doing all this for her???

[Belinda]

Tell the doctor that you have made the decision for Eri to take some respondsibility and leave it at that....if he/she doesn't like your decision then start the search immediatly for a new one. You are taking care of her, if not then why did you bother taking her to the doctor in the first place. Good Luck Robin and keep your head up.... ;)

[CarlyesHope]

That's how I feel...I mean..it's like COME ON!!!
The thing I can't stand about this novolog and novolin routine is this:
Last night I was just totally worn out and fell asleep on the couch...her dad gave her her bedtime shot(oh yeah, the endo wants US to do ALL the shots and testing, NOT Eri...they don't believe that we've been monitoring her)....anyhow, I said, did you give her the shot, and he said, yes, 9 units of novolog..I said, that was TOTALLY wrong, it's supposed to be the novolin!!! So, he gave her the novolin(her bg was 303)...she ate a jolly rancher, went to bed, her middle of the night reading was 101, then this am it was 167.
The novolog and novolin are just so close together(name wise)...
UGH...can you tell I am a bit frustrated? She was just 267 and we are following everything to the "T"

I am so irritated by what you say about these doctors. You, and only you know your child, I wouldn't wait till the 2nd for another appointment, I would find one now, I would also walk into the office and ask for my childs records, and then I would let them know why (loud enough, but not rude, so that those sitting in the lobby would hear your concerns - I would also expect to pay for the copies - I have to here in MI)

As for the pump, here is my $.02 from everything that I have researched (at library and on the net), the pump WILL improve her condition, when you get the diabetes under good control you can start dealing with the other medical concerns but right now you are just going in a cirlce: the gastritis is irritating the stress which is irritating the diabetes which is irritating the gastritis and so on. Get one under control and the other can be manageable. The pump seems like the most logical place to start.

Be strong, put your foot down, if in your heart, you know that Eri is responsible and ready for the pump, then do it - find a doctor that agrees with your gut feelings and get it done. I am sure that you are correct because as I have stated, no one knows their child better than you!!

I hope Eri is feeling 100% soon!

[Eri's mom]

TY for all the advice...I am actually calling the doctor's office in a few minutes.

Eri is still home(she just can't keep her eyes open, and her stomach/chest still hurt, but I think she strained it a lot w/ how sick she was.)

Her middle of the night reading was 271 and the am was 267...

I would like to see the doc she saw originally...and that's what I am going to request. I know they have the issues w/ the HbA1c, heck, so do I, but as even mentioned above, the gastritis, PAD, etc., it's like HELLOOOO!!! Please do something about this(so she is on prevacid for the gastritis and they have her seeing a psychiatrist for everything else...hmmm)...

OK..getting ready to call :)

[Carwy]

I do hope and pray Eri is getting better every minute. As for the Dr. not wanting to listen to you and her. Find a new Dr. I was forced into finding a new oncologist and now I'm in remission. So this tells me that sometimes the first Dr. is not always the right one.

[MarkMunday]

Robin,

This all sounds really unpleasant. But don't let your frustration cloud your judgement. I agree that using a pump is the best control system. And that it makes the user accountable, which is the ultimate outcome you really want. But I am not sure that switching to it now would be in Eri's best interests.

I can understand the endo's reluctance to switch to the pump while other complicating factors are intervening. Using a pump in these circumstances is risky because, if something goes wrong, it could get out of hand very quickly. You really need to get the gastritis and PAD out of the way first.

Sticking to MDI until the situation is stabilised would be a more conservative approach. But I really can't understand why the endo is switching her back to NPH. Achieving stability and preparing for moving to the pump would be a lot easier with Lantus.

Cheers,

Mark;)

[Eri's mom]

Thanks Carwy and Mark :)

It is so nice to hear that your new oncologist at least must have listened to you and knows what they are doing!!!

W/ Eri, well, now I just have to wait for a return call.

You are right, Mark, I know the gastritis and PAD need to get in control, and I'm going to work w/ the pediatrician on that, b/c the endo doesn't want to...(you'd THINK they would help, but oh well)...I was TOTALLY shocked when she took her off the Lantus. I let her know as well, but that's when things started to get heated between she and I. (and that was w/ the psychiatrist and my husband and Eri in the room)...

I'll get there, Eri will get there...things WILL work out...I'm determined and so is Eri. (it's just getting over this frustration!!!lol)

[Dewey]

Hi Robin,

I'm really sorry and sad to hear what you, Eri and your family have experienced lately. :( I sure hope things look up. Like the others, I agree that Lantus is the best choice...I think Duck said in another thread something about how the thought of having to take NPH made him cringe. I totally agree with him on that, and cannot fathom why any endo would use that as a drug of choice on a child who needs a more stable insulin. Lantus and Ultralente are more steady, and don't have the harsh peaks that NPH provides. It may work for some, but it definitely sounds like it's Not working for Eri. :( I sure hope and pray that you can find a better endo in your area to get Eri the proper treatment she needs. Please know you're in our thoughts, hearts and prayers.

[KrisinNM]

I feel your frustration, seems like it never ends.
Just a thought: the Prevacid may be interfering with Eri's insulin. I know I can't take Zantac for that reason.

[Eri's mom]

Thanks Dewey and Kris....

Wow Kris...the zantec really interferred w/ the insulin? I will DEFINITELY bring that up to them this week...even though I TOLD the endo that, but she wants the peds to deal w/ the PAD and gastritis, so we'll see how that goes!!!

As for the Novolin and Novolog...well, put it this way...I'VE been doing ALL her testing AND all the injectining...(she already has the attitude, where we were both sitting there and I asked her to take her own sugar, and she said, you KNOW I'm not allowed, YOU do it...I mean, how aggravating is that? Not that I am not here to help here, but I was right next to her, watching every move...she did it herself, but it's like ....good LORD!!!)...anyhow, she hasn't had a reading below the 200's now since Thursday. Go figure...and we are right where they want us to be w/ the carbs(60g for breakfast, no lunch snack), 75 for lunch and 60 for dinner and 45 for a bedtime snack. She IS having a hard time consuming that much, and she won't always eat the required amount(just too much for her, and the CDE said that the nutritionist will be back this week and will adjust her numbers for her w/ that).
To me, it seems as though the novolin is not working...Eri even said she misses the lantus and missed bolusing at meal time.
Then again, w/ these higher readings, it's still going to be my fault...regardless of all other conditions, and not forgetting puberty...but oh well.....I'll do what I have to do to bring her sugars to the right level and get her down to her targeted 7% HbA1c.

OK, rambled on there...sorry 'bout that!!!

[Belinda]

Just a thought here...are you keeping a journal of everything she eats, exercise, meds, and bs? also adding to that how she is feeling? I do that on occasions and bring it in to the Endo. He likes seeing it and has gotten to the point of asking me to do it now. Your endo needs to take a step back and ask Eri how she is feeling and what she is thinking. Anyone in their right mind would not need a psychiatrist for that. I am so glad my doctor ask me that and tells me he is the "coach" and I am the "player" in this disease.
good luck with it all, you have more patience than me because I would have already lost control with the doctor...nah....I just would never go back.

[Eri's mom]

As a matter of fact, yes, I am :)

Eri(and the family) are going to start seeing a psychiatrist, to help w/ all this stress, etc(a lot from moving from what the psychiatrist told us in the hospital)...so I am praying that helps as well!!!

We see him on the 24th of this month, so we'll get a better feel of things then :)(and then the June 2 appt. w/ the endo...her sugars are STILL in the 200's!!!)....frustrated, but dealing w/ it!!!