You'd THINK she'd get a break

[Eri's mom]

Hi agian...
Well, today is Eri's 6yr date of being dx'd with diabetes...and, she's sick...AGAIN. The sinusitis never went away, she still has fluid in her ear and the gastritis is acting up BAD b/c she's always in the bathroom and also throwing up. UGH!!! She went from HI last night to 55 this morning(although she was throwing up), and I gave her her full dosage shot(31units....9novolog and 22 Novolin NPH)...and she ate MAYBE 30 carbs(out of her recommended 60)...and she went up to 153 and then 194 while at the peds(I spoke to the endo earlier)....then she wanted sushi (she LOVES ginger b/c it settles her stomach). She also chugged down a water....
They put her back on the prevacid b/c her large intestine felt swollen.
Anyhow, that's the news from here...all these doctor appointments...I just hope and pray she finally gets better. She fell SOUND asleep on the way home, and she's out cold now, but w/ a reading at 353 right now.(I just gave her the 3 units of Novolog).
Have a great one all...

[lgvincent]

I feel bad that she's having such a hard time. I wonder what the underlying cause of all her trouble is? I hope you find it soon.

[am1977]

Sorry to hear this, Robin...hope she feels better soon~ :nurse:

[Georgia]

Oh no poor Eri - she really does deserve a break. I hope she feels better real soon.

[nantomsuethom]

When it rains it pours. Robin you all have to be wiped out!!
I feel really bad for you all. You will continue to be in my prayers!

I think she is allergic to NY.;)

[Penny]

Just seems like when a person is so sick, it really drains them of their ability to fight off other illnesses. I have been through this before, and she is so little, she has to fight harder. I hope she starts getting better real soon. I just hate to see a little one sick, so much.

[valc3]

Robin, I hope Eri starts to do better soon. It isn't right that she is having such a hard time. Hugs to both of you.

[Eri's mom]

Thanks all:)
She's still sick today. She went to bed again w/ a reading in the 500's...high ketones, got her shots, and went back to bed(she did attempt to vacuum her room)....b/c she ended up taking a 7+ hour nap(from the time I typed the first entry). She couldn't finish vacuuming b/c her heart was racing and her sides hurt...head was pounding.
I tested her bg at 4am and she was at 59...light ketones, made her eat something and had a capri sun, had her shot at 7:15(as always) and is up to 207...and still sleeping. It's like she can't keep her eyes open again.

Maybe she IS allergic to NY?:hmmmm:

[Eri's mom]

Well, she is STILL sick. Today her sugars changed and she woke up in the high 300's. Fun. NOT!!! I think the augmentin is starting to kick in now(since the regular amoxicillan didn't touch this sinusitis).
Ketones...still....but, as long as we keep her hydrated, the endo's said we shoud be ok, and if she went above 350mg/dL, then to adjust her novolog.
They couldn't do anything yesterday b/c they said it was "starvation" ketones.(her bg was in the 70's and low 100's).
I got a little frustrated b/c I did call endo, like they told me to, and the doc on call was really short w/ me and told me to call her pediatrician. So I called there, they saw her the day b/f and asked why I called them when ketones were my concern, and I said b/c the endo told me to call(I KNEW I didn't need to talk to the ped)...so they told me to call the endo back, which I did, but got a different one, who actually took her time and spoke to me and got all up to date on what is going on w/ Eri. (chest pains still, back...kidney...pains, headache, earache, nausea, etal....)
Soooooooooo, I pick up the rest of her school work(she's been out for a total of 2 weeks now), oh, I pick it up tomorrow so she can be all caught up by Monday. Praying she is right by then and can keep food in and stay awake.
OK, I rambled...
Have a great night/day...

[sydneya]

I am soooooo sorry for you both, Eri & Robin. What a trooper you both are. I hope you realize how much you are loved in this group Eri. Eri, You are my example of doing what you can to get well. Robin, you are my example of love, concern, empathy, and never ending service. Thanks for sharing with us, Robin. I'm sorry you have to deal with doctor that are both flustrated and flustrating.
When you get through this adjustment to New York or never ending trials, I hope you get a well deserved rest in the Bahamas or something equal.
Keep the chin up and take care of your health, too.

[Sparkle]

Is there something else wrong apart from Type 1? It is unusual isn't it, to have all these things wrong all the time? I know if you do get ill it's hard to shift it (hence flu and pnuemonia jabs) but maybe her insulin is wrong for her or something??? Must be a worry.....

[Dewey]

Is there something else wrong apart from Type 1? It is unusual isn't it, to have all these things wrong all the time? I know if you do get ill it's hard to shift it (hence flu and pnuemonia jabs) but maybe her insulin is wrong for her or something??? Must be a worry.....
Sparkle, I completely agree about the insulin possibly being wrong for her. It seems that since she's been on NPH & Novolog (at least from my outsider point of view), she's been battling more consistent illnesses & issues than before. I truly believe Eri'd benefit from a constant insulin drip (i.e. going on the pump), because if her sugars don't get under control, the cycle will remain a vicious one. :(

Robin, I had this very argument (as listed above) with Carwy's Seattle docs when they kept chasing his high sugars with shots (and weren't testing him often enough). The minute they started testing his blood sugar more & put him on an insulin drip (via IV), his sugars began to drop, the fever broke, & whatever infection that was trying to brew, began to clear up. His cells also started to engraft (the way they were supposed to). I worry very deeply about Eri & her health. :( Please keep us posted, and I say keep on the peds/endos about possibly switching her to pump therapy. You & she have nothing to lose by trying, and it seems like other avenues aren't working the way they should. I will keep you, Eri & your family in my thoughts & prayers. I'm sorry she's going through so much, and hope that things will look up for you & her very soon.

[Carwy]

Robin,
I wanted you to know that Eri is in my prayers and thoughts. Keep on the Dr. and force them to do what is right. Let them know Eri's life is more inportant then them making a dollar.:****mate:

[Eri's mom]

Thanks so much all :)
They do know that Eri has the sinus infections, gastritis flaring up and all that. They aren't taking into consideration that her heart has been pounding so bad it bothers her. It's driving me crazy and I plan on getting another follow up with both the pediatrician and the endo(her next endo appt. is the 23rd, but I'm going to try and change that).

Eri and I have been talking about the pump, and I think she's about ready to go on it.
I agree that this regimine isn't working well, honestly, it never has, but her head endo is against the lantus. I told her we were dealing w/ the whole puberty issue...which she is really going through...and exremely regularly(she'd KILL me if she knew I wrote about that). I told this endo my concerns(I wrote about that when she was in the hospital in May)...
I keep reminding them about the gastritis(her ped said that her large intestine is enflamed), and her kidneys hurting...
This morning she dropped to 37, got up to 69, and we are getting ready to test again(my dad watched them while I worked tonight...I've missed all week so far). We do get her to eat soup and she is drinking plenty of fluids...propel, water and capri sun(that brought her up a bit)...it's just a crazy ride with her and I feel as though I am actually annoying her doctors...all around.
While at her school today, the guidance counselor...and nurse...suggested maybe home instruction until she is on track(b/c she is awake until after 3am sick to her stomach)...sometimes just the pains, sometimes getting sick...and getting her to stay awake is hard!!! She sleeps 90% of the time...and I request more tests, but then I feel as though they look at me like I'm some whacked out over worried parent. The family history just freaks me out...especially since my mom had the EXACT same problem with her heart as a child and now she's had so many surgeries...and an aorta replacement...and has PVD(and lupus, amongst others).
I'm sorry for venting...there is so much hitting me from everywhere.
I'll shut up...
Thanks so much for listening!!!
I'll keep you updated on what goes on...hopefully they'll actually realize that I AM trying and Eri is REALLY trying, to get herself in great control.
(and we have been from the beginning)

[Penny]

Writing about things that cause you to stress out, helps ease the strain. We can't physically help you here on the forum, but we can listen. Rant away, that's what we are here for. This must be so hard for Eri, at her age (my Emily is 10) she just wants to worry about little girl things. Give her some extra hugs from me and Emily, and let her know we care.

[Cinnabon]

You can rant all you want, WE ARE ALL HERE TO LISTEN.
I hope so much that Eri gets her pump. Keep us posted. BIG hugs for you and Eri

[gettingby]

Oh Robin !!!!!!! {{{HUGS}}}
Both you and Eri DESERVE a break !!!!!!!!!

[sydneya]

Please don't "shut up...". We need to hear the concerns of the forum. And we realize that you have some very real concerns. I can't imagine the strength it takes to help Eri through her ordeal. If you are annoying her doctors, as you say, they need a different profession. They need to know what's going on and they need to be told again and again if it doesn't get through. If they can't tell that you and Eri are both trying, they aren't listening. It is obvious you are doing everything you can. I can imagine that Eri does sleep a lot of the time. She is going through so much. Please let her know how much I admire her. She is a real trooper. And so are you!! WE CARE!! PLEASE KEEP SHARING!!

[Eri's mom]

Thanks again everyone :)

I feel so bad about ranting, it's just so...not annoying in the sense that it seems as though it is never ending, just that there is so much and nothing is helping.

I sent her to school today(she barely slept last night, as usual, but that's b/c she doesn't feel well, it keeps her awake, and the problem is her chest pains and heart pounding.). She is ALWAYS tired.
I made an appointment with her pediatrician again today...they have a 30 minute block set aside for us. I want her to see a different cardiologist. I was wrong on the endo appt. date(my son erased my PDA...UGHHHHHHHHH...boys!!!)...it's the 19th of this month.
We've been doing everything they have told us to do. I know there is another underlying problem...who else knows their own child better than their parent? Her color has been off and she just wants sleep. I am praying that they at least figure something out so she can get through a day w/o her cheat hurting and heart pounding and kidneys feeling great. (she was 205 this morning, not bad, since she didn't eat dinner last night b/c she slept and didn't feel good).

OK, that's about it for now...as I mentioned b/f, hopefully we'll get some kind of answers w/ this doc visit!!!

[gettingby]

RANT AWAY !!!!!!!!!!!!!!
Keep us updated on the doctor visit and don't let them push your concerns aside. YOU know Eri better than they do !!!!!!!!!!
Hang in there !!!

[Eri's mom]

Thanks, Cin :)

Well, we were w/ her ped yesterday for about 2 hours. They did urine analysis', blood tests(even did a mono test...negative, thank God!)...but her heartbeat is irregular and when they touched her stomach, she was in pain...especially on her right side. Sooooooooo, she goes in on the 25th for a u/s(they KNOW she is in pain, but hey, let's wait a couple weeks)...and for the echo on the 24th(all while the regents exams are going on)...we see her endo on the 19th, so MAYBE they will get us over there either THAT day(doubtful since both the u/s place and cardiologist close at 4 and the appt. is at 2:30)...or the next day.
Honestly, I was almost hoping for mono just so we had an explanation...even the doc was shocked she didn't have mono...
At least we do have appointments(my dental for my wisdom teeth is on the 19th in the morning as well, so I can schedule having those taken out...yea, some ME time...lol)...good way to lose weight anyway!!!

That's about it...surprisingly, her grades have gone up...yes, she has missed tests in each class, BUT, she brought most grades up(math is was doing HORRID in and now she is just shy of a "B"...and science and tech, low A and high B...same w/ social...English, well, there's an issue w/ that teacher, but French she is doing well in as well...once she hands in her project in tech, her average will almost be a 100%...I am quite happy with that, since she USED to be an honor roll student.
Oh, the social worker called on Monday b/c she has missed so much school( I have the doc notes to back it all up though)...I can understand that they don't want any "educational neglect" but I did make sure I requested...and got...her assignments...so that should say something.

OK, shutting up...and thanks for listening!!!

[buzzborne]

Robin, I hope that Eri is ok... my thoughts are with you,her and the rest of your family at this worrying time. (((((HUGS))))

[Eri's mom]

Hi again :)

We just got about almost an hour and 15 minutes ago from CHOB's. The ped sent us to the ER b/c her stomach and all, so I had to go to school to get her...checked her bg in the clinic and she was 38(and was acting totally fine and normal)...believe it or not, she STILL had a small trace of ketones...so, we stopped and got her a bagel and a small hot chocolate. She went up to 96. :)
Got the the hospital around 11, discharged around 7ish...bloodwork, urinalysis and an IV drip, and she's home....they are almost positive it is mono...they think she had a false negative from the rapid mono test at the peds on Monday.
So, off to the ped again tomorrow(another missed day)...and we still have the follow ups w/ the cariologist and the ultrasound on the 24th and 25th...and still sees the endo on the 19(although they told me to make SURE that I let teh ER know it was the peds who sent her in)...
Eri's ticked b/c she wanted to go to school tomorrow, PLUS, school dance and some boy asked her to go. Ah well, such is life. There will be more dances, God willing :)
(and my son is bringing his g/f home tomorrow...he lives with my mom, but still...AHHHH!!! He's going to be 15 in February...he's FINALLY not hiding his g/f's, but I'm not there to meet her :(...)

[Carwy]

Keep your head up and know that there are a lot of people sending good thoughts and prayers her way.

[Eri's mom]

Thanks Cary :)
Most definitely...family of fighters here...been through the wringers and back again...I just get so annoyed sometimes :)
We appreciate the thoughts and prayers!!!