Eri's appt.

[Eri's mom]

Hi again...
We finally got to see the GI that both Eri's endo's and ped's referred yesterday right after the funeral.
They said they think she has a type of gastroparesis.
They are going to try her, first, on one routine, and if that doesn't work, she is going to be admitted to the hospital to have it done w/ a tube that will be inserted through her nose and down. We're obviously hoping this first way works!!!
Nobody is telling me why her hands are so swollen...no exact reasoning anyway, so hopefully, I'll get some answers to that soon.
Her bsl's have been a bit crazy lately, but they think it is b/c of stress and what's going on with her physically as well.
We should know by next week if she will be going to the hospital or not.

[gettingby]

Hey Robin!! Thanks for keeping us in the loop. Let us know how it goes. I am hoping and praying that the first way works. Take care and hang in there.

[Littlebit63_99]

Eri's Mom,

First, if her hands are swollen, have her lift them above her head OFTEN.

I can't tell you why that happens......I wouldn't even try, I'm not a doc.

Second, I had to respond to this. Dr. Sutherland (a world renowned transplant surgeon) told Jeff and I that 90 0/0 of diabetics diagnosed with gastroperisis.....don't actually have it. It is the colon that is damaged. I am about to go thru a battery of test at the U of MN to re-diagnose my gastroperis. I have lived with it for 10 years...........If Dr. Sutherland is right(in my case)-------that's VERY important, cuz all cases vary. Then, I will have a surgery for my colon. He said their success rate if VERY high.

Robin, I had a test done in '97 that should have told them that it was NOT gastroperisis. They had me come in at 6am with an empty stomach and eat a breakfast. They had dye in it. They followed the food thru my digestive system. It moved just fine. I just can't have bowel movements............
Dr. Sutherland said the gastro diagnosis is a blanket diagnosis.

I had to tell you all of this.........I was misdiagnosed for over 10 years. And, I didn't have to go thru all the pain and bloating that I have for all that time.

[Cinnabon]

I hope this turns out well on the first try. YOu r with us all!

We will be waiting for your post.;)

[am1977]

Thanks for the update, Robin.

I certainly hope it's not Gastroparesis. From what I know, that condition, not only is a pain in the a$$ with blood sugar control, but is very painful. After reading what Liz said, maybe it's a good idea to get a second opinion. YOu don't want to put her through all that testing for nothing.

Hopefully, whatever the situation is, it's very easily treated and Eri will start feeling and doing better.

Keep us posted. :)

[Eri's mom]

Thanks all :)

I had gastroparesis...went through that gastric emptying test, hidescan, endoscopy...all that fun stuff(talk about BORING)...although they gave me the dinty moore beef stew to drink w/ that stuff in it to watch the digestion, so that was pretty good....lol.
Her GI doc was like, YOU have GP? I said, yes,well, USED to, I did a homeopathic cleanout and it's gone... and he said, so, you're a diabetic as well? I said, uh, no. He was like, interesting. Ah well, so I'm just weird I guess...lol.

As for Eri, I just hope all works out the first time around ...

[Funnygrl]

It sounds like you may actually be getting somewhere. I had gastroparesis, and it is not the end of the world. Is Eri on reglan now?

I also did the tube down my nose twice and buffalo children's and it's not too bad if you do end up needing that.

[Eri's mom]

Actually, she's not on it now, but I am...lol.

She's doing all that mirolax now, well, starting tomorrow b/c we've had a TON of company from out of town for the funeral, and now the house is quieting down.

That is good to hear that it isn't so bad, b/c the doc had Eri kind of really worried!!! :)

[Funnygrl]

I am on Miralax too. It works well. I hope they can get Eri better :)

[Carwy]

Thanks for the update Robin. Keeping her in my prayers.

[Eri's mom]

Thanks all... :)

OK, I had to take both my girls in today...Eri's totally out of it 90% of the day and Elle sounds like a seal when she coughs and has an ear infection, they think, possibly strep as well, but they are covering her w/ the amox.

Eri's strep test came back neg....which, of course stumps all...b/c her throat is red and irritated(she is not coughing), her sinus cavity is sensitive along w/ the back of her head, so they are first sending us to the Allergist and Immunology and then to an E.N.T. doc. They told me I should have my name put on a chair out there b/c we are there so much and we aren't getting the answers as fast as we'd like(OK, so I'm impatient...I just want my daughter well!!!)...
Her stomach is still hard and tender(sore to touch)...so that's a concern, pointing more and more to the stay at CHOB's...whatever it takes, right?

Her bg's aren't doing that well lately...so she is battling something. She's just always totally thirsty, barely hungry...and I'm doing everything they are telling me. She has the most stubborn system!!!

I'm determined to get her 120% better though :)

[gettingby]

Hang in there Robin !! Do whatever it takes to get our favorite gal better !!

[Eri's mom]

Thanks Cin :)
I just wish I knew WHY her system was so stubborn!!!

She had just veggies for dinner and a couple crackers...and her sugar was 427!!! She's drinking water like a fiend as well. No ketones, so that's a good thing, but at the same time, I'm just getting so frustrated w/ myself b/c you'd think I could control this.

To make things more annoying, I have that ear infection still, which has turned into a sore throat and is moving to my chest(wonderfunkle!!!)...I need to be healthy so I can get these **** wisdom teeth yanked out!!!...it's the kind of ear infection where if I open my mouth to eat it sends a searing pain right to my ear and down my throat.

[sydneya]

Your prayers are with me Eri and Robin and Elle. You three are my example. :nurse: Hope all three of you get better and are able to withstand everything that has been handed to you in the past few months. Life will seem so good when this is over that you won't even care about the normal diabetic things. I hope and pray that the easiest way works for Eri and that you are able to get enough rest to fight anything off from you, and that Elle knocks the ear infection and bad throat in the bud. Just keep supporting each other and it will come together. Know we are thinking of you!!

[Eri's mom]

Thanks!!! :)

I'm a wee bit peturbed right now...I called for Eri's allergist appt...they won't see her until APRIL 21st...regardless of the pain she is in...I'm just so annoyed with all that. I mean, I DID get her on the cancellation list as well, but still, I just want her WELL. I can care less about me...I just want my kids healthy.

Have a great day :)