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Wow, still not sure how I managed to miss quite so many posts - feel like I'm in a time warp or something! ;)
That's great they want to get Grace seen at a big hospital, and hopefully a good team of docs will get to the bottom of everything!! Admitted - well, here's hoping :ysmile:. Hope you don't have to cancel the scopes and then wait too long.
 
I agree with Crohn'sinct. Do NOT cancel the scopes. Have the scopes. The new GI can deal, and if she has to be re-scoped, so be it. What's a re-scope next to all the pain she's already been in?

If you cancel and God forbid Mott falls through somehow, then you'll have been REALLY delayed...
 
Yay for a wonderful nurse! I am so glad Grace is finally going to get some treatment!

Secret I learned when my son was in the hospital.....don't piss off the nurses! Ok, I already knew that and I'm sure you do to!

Hope you get some answers and Grace gets some much needed relief.
 
You will probably be on the 12th floor. 12 East has the best nurses. Love them and they have a union so no funny business they each usually only have a few patients each. I hope you get to me Chris Dickinson, he was awesome, by far my favorite GI.
 
Hopefully this new direction will be get thing moving forward for Grace.

Thinking of the whole family.
 
Finally had a chance to get back on here! So glad for good news! yay for the new hospital and GI docs. I am so glad she will be evaluated by a team. Have they given any timeline for when they're admitting her? The truth is once she is admitted it is usuall y easier to get the insurance to agree for her to continue treatment with those doctors when she leaves.
 
Isn't doubt horrible!:ymad:
For some reason last night I was freaking out about changing my mind and wondering if I'm making to much out of this. I mean for the most part she's very HAPPY. She's not in dire pains all the day, she's not SICK like most of yours! She has gone a day or two or maybe even three in almost perfect health(not lately).

Then........

In the middle of the night her knees start to bother her, by morning time her ankles hurt to walk on, then at breakfast food not sitting well and she's cramping for awhile. But now it's all gone (for the time being).

Doubt is horrible!:ymad:

Sorry just reflecting a bit before my overly busy day gets started.:hug:
 
Calling the nurse this morning. My twin who takes my nephew their for what's now being called rare brain disease said that she was told also that you HAVE to go through the ER if you haven't been seen. My doc is going to try to let them KNOW about Grace. We'll see what happens. The reg, nurse that handles the scheduling is off till Tuesday. Hopefully when she's back maybe she'll know more tricks of the trade. Of course they can call her I know she wants answers for Grace as much as us. I tell ya, I wish he wasn't retiring. There the best.
 
...so they're saying that her admission will be Tuesday, at earliest?

If it were me I would not accept that, but you do what you have to do.

It's best not to go through the ER, but if it seems like doing so will clear the log jam and get her in there, then, again, you do what you have to do.
 
Actually Muppett we have had very good experiences when we went through the ER several times. It was the way we got Caitlyn scoped so quickly and diagnosed so quickly. Farmwife I sent you a PM last night don't know if you saw it yet.
 
I guess it will depend on the facility. Here in CT the ERs are slow, backlogged, and staffed by people of questionable competence. Still, if it means getting admitted 3 days earlier, I'd go there in a heartbeat.
 
We hope soon but even the nurse admitted she has no idea.
When I called Mott's she said they were booked out till January. No GOOD!
But she was so sweet when I explain and she took my doc's fax number and said she would get the ball rolling for the GI appointment. But of course she couldn't say when the appointment would be. My Twin is also going to make a call to a doctor their and see is he can help. A lot of people are helping Grace which I appreciate. :kiss:

Grace woke up on her own and is now laughing a Curious George Christmas Monkey. I fear now she will try to swing from our x-mas tree.:rof:
 
What I'm hearing is this ER is very good but my doc hopes if they hear about Grace before hand that might help.
 
Farmwife said:
What I'm hearing is this ER is very good but my doc hopes if they hear about Grace before hand that might help.
Click to expand...

All your doctor should have to do is call them and tell them you're coming. Does he not have admission privileges there?
 
Did they tell you whose service they are admitting you too or does the GP have privileges?

I would not under any circumstances cancel anything until you have a clear path.

I know the nurse said admit her. Did y'all ever see the doc?

Prayers for Grace & your family-

J.
 
muppet said:
All your doctor should have to do is call them and tell them you're coming. Does he not have admission privileges there?
Click to expand...


:(
Things are changing so darn fast in our medical system.
Primary Doctors don't have the authority they use to. He hates that.
Which is one of the reasons he's retiring.
 
Farmwife said:
:(
Things are changing so darn fast in our medical system.
Primary Doctors don't have the authority they use to. He hates that.
Which is one of the reasons he's retiring.
Click to expand...
I wonder if that's some policy change local to your area, because this is news to me.

Lucky for us, in the past, Sarah's doctors have clinics right in the children's hospital and we go from the clinic right up to an inpatient floor, but there have been other times where I've simply called the pediatrician on the way to the ER to say "We're on our way there, please call ahead of us."
 
AZMOM said:
Did they tell you whose service they are admitting you too or does the GP have privileges?

I would not under any circumstances cancel anything until you have a clear path.

I know the nurse said admit her. Did y'all ever see the doc?

Prayers for Grace & your family-

J.
Click to expand...

:hug:
Yes the doc saw her last week and I've talk to him or he's called me a couple times in the last two weeks. I've talk to him more then my hubby.:confused2:

Not canceling anything! I do believe the GI she still has wants what's best for her but......Grace needs head to toe evaluation. It might not be IBD but we do need to figure out what this is. Mott's is a University hospital and teaching hospital, they take the hard cases. Which is why the doc feels that this is the best place for now.
 
Like Muppet my only worry for you is if you head to an ER with no prior arrangements and she's not experiencing acute symptoms, she may not qualify for admission....even at children's teaching hospitals. Just want to prevent that for you!

J.
 
In my experience U of M does very well with transfers. Unfortunately she is not a transfer since she is not currently admitted. Also I think it is nearly impossible to get a direct admit at a new hospital without being transferred as an inpatient. I say let the doctor figure it out. Hopefully he has some strings he can pull and get her admitted via ER. We have had great support through U of M ER in the past. Rowan has saw a few GIs in the ER. Of course we have never not been admitted. I hope they can get her case bumped up as planned via doctor to doctor referral. Otherwise they wouldn't admit Grace I don't think.
 
You have said before that you have a second Pediatric GP - if an adult family GP can't for some reason (which is news to me too yikes) get her admitted, than surely your pediatric one can.
I'm sure you've already called them - just thinking out loud here :)
 
OK saw doc and head nurse.
They've already been in talks with Mott's, YA.
They (Mott's) think she's very interesting case and want her whole history.:eek2:
The 5 page write up I did for the GI, I never gave to GP and of course when the laptop got fried I lost the whole thing. So today will be spent going over forum and the nurse said I'm to go back to when I was PREGNANT and start from there. WOW! She said bombard us with every little detail and make sure we send along her symptom journal as well. She said she's already putting together a file from there notes. Mott's wants it all!
BUT.... I and they still have no idea about timing.
Still we'll keep the scope date.
Their's an interesting angle that my GP is going at but if it works then so be it.:ghug:
 
This is good good good. Get writing!! Also, if Grace was ever in an ER or admitted anywhere else, try to list that so that your doc(s) can get those records, as well!!

About not knowing about the timing: :ymad::ymad::ymad: PUSH PUSH PUSH get that girl in there so that they can see what's up with her. All that fatigue is bad news.

Most of all Good Luck and keep on top of those people!!
 
My goodness, what a whirlwind - thinking of you and Grace today and hope she gets admitted asap - sending big hugs xxxx
 
Just saying if they are asking for all her history then it may be a while before she is seen.
You get the entire timeline together and give it to your doc.
( 1 day if your quick if not Monday)
Your doc reads it and makes their own doc notes to add making it official ( at least 1 day so Tuesday .
They get the info to the administrative side at Motts who will have a whole team reviewing it ( in a rush 1-2 days since they need to discuss opinions and how they would want her there action plan etc)
So if your very lucky next Friday.
CIC was right unless your gp has some tricks getting her admitted from the ER when her symptoms are not as obvious right now may cause an issue for you and the insurance . But since they are reviewing her records they could just open up a slot for her to be seen on day X.
I have seen it before when the doc wants the patient to be seen vs you trying to schedule an appt.

Either way I hope she can get seen quickly and you can finally have some answers.
Good luck Motts.
 
Thanks everyone,
I got her whole history recorded and in there hands already.
:thumright:
Yes going to the ER won't happen unless it's an emergency.:frown: Even then I would probably go up here. I've had horrible battles with the insurance before. They decline me because of a pre-exciting condition-HEAD ACHES! That's right they said since I've had a head ache before they won't cover it. My doc still won't charge me because their still fighting it for me!
Grace had a wonderful day except some joint pain. She's more alert. Woke up from nap be her self! YA!!!
See maybe I can get my bubble put back together by Sunday!

:ack:This smiley will be used when I have to tell crohnsinct something she disagrees with!:ytongue:
 
Sorry no bubble allowed.
Does any ped near you in your network have privledges at Motts?
That may be something to look into .
Also will your insurance change at all for the new year.
Per the new crazy health care laws they can not deny a child for a pre existing condition so at least that is in your favor for now.
Hugs but NO Bubble you still have a lot of work to do.
 
my little penguin said:
Does any pead near you in your network have privileges at Motts?
That may be something to look into .
Click to expand...



I don't know!:ack:

When I start looking for a GP (because I haven't:ack:) I'll ask.

I'll start when my bubble is construed!:ack:

David since you have all time in the world. :ack:
Could a smiley in a bubble be added to the group. :biggrin:
I would like it to be named the mlp smiley! :ack:
 
You can run but you can't hide.
There is this thing called the "Internet"
You put in your Health plan website and pick specialty "peds"
Miraculously --->>> wait for it
A few mere seconds and .......
Out pops a list of providers
A few more clicks. On the peds website and you have a list.:ack:

No mlp bubbles - I think FW bubble since you want to stay there.:ytongue:
 
Like this?

emoticon-living-in-a-bubble.gif


smilelivinginabubble.png
 
Do it for me mlp, your a doll.:ack::ack:


:ytongue:When I have time AFTER, my bubble making revamp I'll be happy to do it.
I decided to place my bay window on the south side over looking the meadow. It's going to be an all day project.:biggrin: Bye-Bye
 
Oh Farmwife,
If I were in your shoes (which I have been) I would be carrying a machete, instead of a rolling pin, and slicing any sign of a bubble ~ There's no time for bubbles
The only bubbles you should be seeing should be coming from princess Grace's little magic wand, as she's blowing bubbles out side, while she patiently waits for you to type in a few words into your search engine :ghug:
 
Thank you Crohn's Mom, your right!
I'll do it right now!
Thanks your a doll and a real treasure to this forum.
 
I'll play with it, but not just now. It is almost midday and I haven't yet taken the dog for a walk or gone down to the shop to pick up my Saturday newspapers. :rolleyes:
 
Type click call
Don't want to see you till you do.

Of course for crohn's mom you do it ...
Me I get all sorts of $@#%.
You are suppose to respect your elders.
Now go type
 
I saw you used my smiley and good thing you did because that bubble making comment really had me going!

Only bubbles allowed are in the champagns (yes had to bring it back to wine..didn't want to let you all down) that you pop when you get a dx!!!! Or of course the bubbles in your convertible car bath!

Have you left yet?
 
Oh, I don't know - a bubble sounds good to me along with a hefty dose of denial :rof:. Pity real life won't let us :(.
Make sure you do your homework or these gals will be mighty cross!
 
Grace had a great night no pain and I got to sleep in! YA
Wow, I feel so lazy getting up at 6:00 am. :eek:
I'm off to spend a wonderful week-end with the hubby and kids.
Christmas decoration, hot coco, restaurant, church and family fun are our plans this week-end.:hug:
Y'all have a good week-end and pray for Grace to have a good one too.
I started her on a natural supplement for joint pain and it seems to making a little but of a deferents. YA!
 
Ok smartalic,

CHILDREN'S SPECIAL HEALTH CARE???! Did you talk to anyone about this yet? Secondary insurance through the state we are fortunate to have it most states do not. This would stop all this network work around crap happening. At least ask someone at Devos about it.
 
I think it's wonderful that you are going to have a fun filled weekend with your beautiful famiy ! I bet those don't come around too often these days :hug:

Enjoy floating in your bubble for a couple of days ~ pretend its a hot air balloon and when the weekend is over, it's time to break out that machete and burst that (safety) bubble and get some much needed answers ! :hug:

Oh and hey ~ share some pics with us of little Grace decorating that Christmas tree ! We would all love it ~ and YES I AM speaking for the rest ! :rof:
 
Wow, has Grace been through the wringer.

Here's hoping that Motts gets you in ASAP to get some answers.

...and how did you find my bubble??

I am also anti-ER unless needed...it may mean a full workup for G that she doesn't need...to r/o things you already know she doesn't have.

(((HUGS)))
 
You can run but you can't hide. I saw your posts on other people's threads...I know you are out there...Are you avoiding Mary? Not smart...she lives in your state...no airfare necessary. I have your address..I can be bribed...
 
Just checking in! I hope Grace had a good weekend and that you are getting some answers soon! We went the ER route with Ryan...positive thing - we got admitted and got answers, found a great GI doctor. Negative thing...I felt like Ryan had to go through some tests there that weren't necessary and then they repeated them upstairs.

Found out anything about that insurance yet? This should be a bubble-free zone for a little while :nonono:


:hang:
 
crohnsinct said:
You can run but you can't hide. I saw your posts on other people's threads...I know you are out there...Are you avoiding Mary? Not smart...she lives in your state...no airfare necessary. I have your address..I can be bribed...
Click to expand...

I KNOW YOUR FULL NAME AND ADDRESS AND WHAT YOU LOOK LIKE IN A CONVERTIBLE COVERED IN BUBBLES AND I"M WILLING TO GO TO THE HIGHEST BIDDER ALSO!:ybiggrin:


What a great week-end. We had a good time. My dear hubby took a second job so these family time is even more sought after.

Update:
Grace was constipated for 4 days. No real bad pains or EIM's during these times but she is very tired STILL.
She went poo yesterday. By evening I saw joint, belly pain creep back in.
Does anyone have a thought as to WHY?

Why whens she backed up, she has little pain but when she's pooping daily the pain of her different EIM's are back?

I did nothing with medical stuff yesterday.:ack:
Today I will be on the ball again and seeing where things stand.
We decided which new GP to go with and hopefully with in the week we should be seeing him.
Labs need to be done but I have to see which GP (old or new) needs to do them.
Does anyone know if during the scopes they will run a panels on Grace. If that's the case I might wait but my GP said the tiredness can't carry on for to long without doing them.
So there you have it.
I' m off for the day! I have to get the wall paper for my bubble.:ack:
 
Oh! Is that your new M.O. Hit and run?

Is the new GP a GP or a pediatrician? Pretty sure the committee voted pediatrician.

I vote get the bloods done now. I don't know if they do them at colonoscopy as O had hers impatient and they were constantly drawing blood. You could call the GI's office but 12/27 is still three weeks away so I would draw now if they are saying she needs them.

I see my smileys and you are using them correctly!!!

Go get that appointment with new GP and go finish calling on that state insurance and call about the Mott's decision. No time to spend decorating a bubble we all popped days ago!
 
crohnsinct
:thumright:This GP is an Internist Pediatric Doctor. The guy we went to last time.:ack: Yes I will state everything again and tell the new things that are happening also. We'll see what he says this time. There's only two of these guys in our town and they both work in the same office.

I will ask today for the labs like I said but if we can get into the new GP this week I would like him to do it. That way I can see what he orders and how seriously he's taking this. See my thinking?
 
Yes. I see your thinking. I just wanted to make sure you were getting it done now and not waiting until 12/27. So at 9 you are calling for that appointment...and at appointment asking for their help getting the Motts decision pushed through...right?

I thought you guys didn't like that doc?
 
Farmwife - Just a thought - you should be able to take copies of your labs anywhere for an opinion. Unless some symptom is "new" or the new doc wants to draw something different, Im not sure labs for labs' sake are going to get you anywhere.

I hope you can work on the admission to the new GI team. Having a GP/pediatrician is great for the illnesses that come up, check ups, etc. But for GI issues, you need a pediatric GI as captain of the ship. With Claire and our multiple specialists, they work as a team and our pediatrician is part of that team but everyone talks to GI before making changes. Make sense? Got get you a captain for the ship!!

This is officially a bubble free zone! Lol

J.
 
Well we didn't hate the guy but we walked away felling like he didn't get it. But now I think it's because we didn't stand our ground. Lord willing I will do that now!!!!

AZMOM,
If he (Possible new GP) only orders that basic labs and not the full panels like she needs, than I would wonder if he really gets it. Does that make sense? We have a GI but are seeking a medical review from a different hospital. Yes a new GI would be involved.
 
Your gp doesn't have to get it nor should he.
This is the Gi domain.
His concern should be to get her seen period at Motts .
Does he have privledges there?
Gp do not have the exp which is why you see a Gi .
They just help coordinate with the Gi which is why it is critical they have admitting privledges at the hospital she is being seen at and then can share records easily.
No bubbles allowed - get moving and searching.
 
Farm wife - I understand what you are saying. I just wouldn't really put a lot of time into someone that can't captain the ship for Grace.

J.
 
Thanks for reminding me mlp.

When I call up the new GP, can I just ask the secretary if he has admitting privileges at Mott's or even Devos? I take it, I could.

My wonderful old GP doesn't BTW.
 
Something's got to give! Glad your seeing a pediatrician. Even though Rowans situation is unlike any other kid my pediatrician sees, she has learned to get very informed about J-pouches and always asks me before sending labwork to make sure I don't want anything else ran. Because she know I know more she doesn't have an ego. She works hard to make sure we get everything covered in our checkup that makes me nervous. (She doesnt want me calling her back worried:confused2:) I hope your new GP takes the time to do their homework and really understands you want to be complete in her dx. No rock unturned. Before I even start talking about Rowan I pull them aside and fill them in on how I am a control freak and need to be informed and I require a plan B. I think some might have found this annoying but now that we know each other, they realize I am easier to deal with if I have all the cards laid out for me.

Can you make an appointment even though it is out of network to go to Motts? If you can I would make an appointment anyway even if it is January and a on a cancelation list.
 
Just a reminder that it's almost 9. ;)
I have said this before, and I know my relationship with my GI is different :blush: but I tell him what labs to order. I tell him why I want them, and because most of us here do our research and nothing is in left field (they are reasonable requests), they get done. I didn't like the kidney function labs (they were at the upper range of normal) and the Peds glomerular function rate requires a cystatin c level. The lab didn't even know how to draw it, but it got drawn lol! If I didn't have a doc that would take my (reasonable) requests for my childs healthcare into consideration, I would move on.

Loads of luck...hoping today is a good day on the farm.

:ghug:
 
Which doctor was it that was working on the admission to Mott's? I thought that was a done deal in terms of making the decision to get her in there, and only footwork was left? What's changed since then? I'm confused?

If either of my daughters had half the trouble Grace is having I'd have been in the ER already. Not judging here, but I think you may be in need of an assertiveness upgrade if you're going to get Grace the help she needs. I'm really worried to hear about all her symptoms and the apparent lack of urgency amongst her doctors if admission to Mott's is somehow off the table since late last week..?
 
If you are considering admission to DeVos, the G.I. would be the quickest way in. If he was willing to do the referral to Mott's I would say he should be willing to get her in quickly to DeVos. Then if they found something but felt it was out of their expertise, they could transfer to Mott's. Sounds like that would be quicker.
 
Thanks everyone!

My GP is doing this and on the phone a second ago with them she said, she's working on it NOW.
We don't know if she'll be admitted. OUR GP WANT"S HER TO BE ADMITTED. I'm sorry IF I confused anyone.
No matter what.... the scopes will take place.

talk to some new GP's sectaries. I'm really excited to meet with them.



Just a side note.:ghug:
I'm sorry if I've put to much info out there to cause a ruckus. I know y'all care what happens to Grace and I love you all for it. However, I feel like this thread is becoming a little to stressful (again that's my fault) for me.

I value each of your wonderful opinions and will continue to be on the forum, if that's OK, I'll still update but maybe not as much for awhile.
I defiantly want answers for my little lady and I know this will be a great place to fellowship and wish you all the best.

My love as always.:hug:
 
Last edited:
Been MIA for a while, but I'm glad that you're going to get the scopes done!!! Finally :) (Hope I didn't miss anything...I didn't have time to catch up on every post!) Still praying for you! Send me a PM if you need a vent!
 
Hi! I am new to the forum. I am a parent of a child diagnosed with Crohn's. However, his case is a little unusual. I believe he may have a Mast Cell Disorder, possibly myocysitc enterocolitis? Please read the (long) story that I have posted about my son's situation. Let me know what you think! Thanks.
 

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