Little Farm Girl and a New Journey

Crohn's Disease Forum

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I hope everyone in the USA had a great Thanksgiving.

Update:

No black Friday shopping for me.:blush:
Nothing to do with Grace, it has everything to do with the bone chilling wind outside.;)
Ciber Monday is the was to go for me!
Grace had a great day. She was tired and sat for most of it but still happy.
She had some canker sores pop up so she just had a shake and lots of cookies and pie.
Poor kid, how she suffers.:D
She did have a BM. YA!:soledance:
 
Glad she enjoyed her day. I am wondering if those are not canker sores but crohns related mouth ulcers? I know several people on here have mentioned that their kids get them. thank G-d that is not something we have dealt with but the doctor also had mentioned them as something to watch out for.
 
Thanks Kim but she doesn't get many of them but when she does, their painful and last forever.
Her dad gets them horrible and
I mean horrible ones. My son gets them also
Thank God I don't get them.
 
I decided last night not to give her Miralax at night because the loose stools is worse.
She had semi-soft stool this morning:dance: with dark blood.:voodoo:
I won't do that again.
She had another major knee pains last night. That pimple like bumps are popping up again.
Down 4 lbs. She says she's tired and other then those things she still the picture of happiness.


YES, I' will be calling the GI tomorrow.:redface:
 
That is a lot of weight to loose for a little one. Glad you are calling the GI in the morning, hopefully they will move the scopes up and you can get some answers. Hope she feels well today
 
Have you been journaling her weight loss? How about her nutrition intake? The weight loss, fatigue, and bleeding would have me thinking of hospitalization and IV feeding.
 
Sometimes something as simple as a heating pad does wonders for joint and abdominal pain. Helps Claire with both......might be worth a shot.

J.
 
Im gonna tag Cat-a-tonic here... I think ? she (or sunshine?) bought some cute stuffed animal heating pads a long while back and said they worked really well ~ and of course they are cute and the kids would love them.
Maybe they can post the link here :)
 
AZMOM we've used a heating pad for awhile. It does work...most of the time or did.

muppet,yes I'm an avid note taker on everything. Grace is still running around and laughing.
My hubby and I are watching her like a hawk. I think the weight problem is happening because I think in her mind she thinks eating causes tummy pain. She wants the shakes most of the time. Bouncing between both is not working for her. The Zantak is working, so I think it MIGHT be mental. Of course she nows her body better.
I will be talking to the GI about all these things.
 
Definitely heating pads. For me they're best on lower to mid back or even to sit on. Just mind sshe doesn't get flushed shes a little kiddo.
 
Oh I,:shifty: or should I say Grace :Dwould love that!

Heating pads shaped like animals. What will they think of next.:dance:
 
4lb - that is a HELL of a lot for a 3year old - call that GI and don't let him go till they agree to do something - thinking of you guys xxxx
 
Update:
Getting a bit scared. Grace woke up from a 12 hrs. of sleep and looked at me most of the morning and said she was tired. Just sat around an played by herself. Then put her down for long nap and she didn't want to wake up. Meaning I put on her winter coat, pair of tights and shoes and carried her out to the car. She still laid there and we went to the food store where she sat quietly in the CART. Didn't even want to walk. She perked up a bit when we watch Cinderella 2 but she was in bed by 8. Her tummy pain creped in after she ate. No poo. She still is not on deaths door step. Still no majors pain or anything today.

Here's the thing she had her labs tested 2 weeks ago. Her iron is at normal levels. She did have blood in her poo on Sunday morning but I've seen a whole lot more come out.
Yes I did call the GI in the morning but NO call back. I will call again tomorrow in the morning, mid-morning, afternoon, mid-afternoon and the evening until I get someone.
I will also call my GP and fill him in.
I don't know if labs will be worth it because she just had them?
I hate to have her poked for nothing.:(
Don't get me wrong I will if I have too.:hug:
 
The lethargy could be a medical emergency. You should get the on call GI on the phone and if that fails, if it were me I'd be on the way to the ER. So much weight loss, bleeding, and extreme lethargy would scare me silly.
 
She's still can do things. She can still smile and laugh and walk but you can tell her spunk has gone but YES this is not right. I guess when your told over and over again this is normal until....(fill in the blanks) you start to believe it.
I will call in the AM, maybe BEFORE the clinic opens so I can get the on-call GI to phone.
 
muppet I sent you a freinds request. :eek2:I think you would be the first guy on my list. Don't worry us girls will be nice. Well........ DustyKat:voodoo: is on my list but she likes you already, so your safe.:rof:
 
please stay safe tonight-I agree with muppet on this.
you could call the on call gi tonight at least - it wouldnt hurt .
 
I really, really think you should get the on-call on the phone now, but it's your call as you're there and I'm not.

The thing you have to understand about chronically ill little kids is that they mask symptoms, sort of like pets (but they're obviously not pets.) Kids tend to normalize whatever it is that's happening to them because they lack a strong basis for comparison because of the limits of their experience. They'll keep on playing while their insides cramp into knots, as they get dizzy from blood loss, until they literally collapse. They may complain about symptoms but will take their cues from you. If you don't flip out, they won't flip out.

When I was a kid I was severely epileptic on top of my Crohn's and Asthma (thanks to meds). I continued to play on several occasions as I went totally blind in both eyes from epileptic auras obscuring my vision, while compensating for the severe vertigo I was feeling so well that nobody could even tell I was dizzy. I mentioned to my mom that I was "seeing spots" before I collapsed in a playground and woke up in an ambulance.

Not trying to panic you or scare you but if I were in your place I think I'd be a lot more worried and I've got 40 years of Crohn's under my belt between myself and my oldest daughter.

Not judging, but definitely worried.
 
muppet said:
When I was a kid I was severely epileptic on top of my Crohn's and Asthma (thanks to meds). I continued to play on several occasions as I went totally blind in both eyes from epileptic auras obscuring my vision, while compensating for the severe vertigo I was feeling so well that nobody could even tell I was dizzy. I mentioned to my mom that I was "seeing spots" before I collapsed in a playground and woke up in an ambulance.



QUOTE]

Oh my:eek2:, How is that not suppose to freak me out??? No wonder Dusty likes you!:rof:

Called the GI office and am waiting for the call back.
I guess I figured it serves them right for not calling during the day.:voodoo:
Click to expand...
 
Thank you so much for not waiting to call. I already feel a little better. :p

If he doesn't call back, call the service again. Don't let up on that guy. I can't believe he didn't get back to you already.

I just wanted it to hit home how severely little kids can mask symptoms. They're really, really good at it. Sorry, not trying to induce panic, just give perspective. :)
 
When to Call Your Healthcare Provider
Your healthcare provider needs to know if your child has any of the symptoms in this list.

temperature above 101 degrees F
stomach pain or cramps that are worse than usual and do not go away
more than the usual number bowel movements in a day
a change in the consistency of your child's bowel movements
blood in the bowel movement or a change in the amount of blood
new rectal pain
throwing up for more than 3-4 hours
vomit that has bile in it (yellow/green color)
bloated stomach
tiredness that doesn't go away
rashes, especially on the lower legs
swelling or pain in the joints
swollen or red eyes
mouth sores and ulcers
Click to expand...

Glad you called.:dance:
 
He called.
He said there's not much he can do for tiredness. Make sure she rest.
He still feels we can weight a month for the scopes because cause her labs are fine, for the most part.

I know, don't type it!!!!!

I'm going to bed and will be calling the GP in the morning.
 
:voodoo::voodoo::voodoo::voodoo::voodoo::voodoo::voodoo::voodoo::voodoo::voodoo::voodoo::voodoo::voodoo::voodoo:

:stinks:

:hug: to you
 
How long ago were labs? Did you tell him about sleeping 12 hours and being difficult to rouse from a nap or did you just say "tired"? He sounds way too cavalier for me. :-(

Good you called. Keep us updated.
 
O.K. I will spare you my rant and just send loads of love and support your way.

But also want to add what to what everyone else has already said...keep in mind our O only had diarhrea and blood for two weeks and swam in a three day meet over the weekend and bested her fly time (a hard event) and on Tuesday was in the ICU getting blood transfusion, on parenternal nutrition and fighting for her life. Of course we know now that her inflammation was simmering away for years before and that this was a one time crisis because we had no idea she had IBD but it does show you how well kids adapt and how quickly things can turn.

I sure hope this doc is right about waiting a month because if anything happens while you are waiting he will have the whole wrath of this forum coming to Michigan all toting our vices and rolling pins.
 
Where are you on the other approval? Was it Mott? Remember we are not calling it a second opinion visit now...we are calling it an opinion visit period. At this point I would put my energy into getting that pushed through A.S.A.P. and hopefully getting her seen sooner there. Then you can cancel with the current GI. You don't owe them anything.
 
Okay, this GI doc seems way to cavalier for me. Did you make sure he understood that this was a change from her normal? Was this your regular GI or just someone on call covering for you doctor? For a child being this tired is not normal! I don't care what he says. Please continue to keep a close watch on her overnight and if anything changes do not hesitate to take her to the ER.:stinks:
 
This is our led up to dx, sarah was anemia, began to lose weight end of November had dropped from 7-8 swimming session a week to 4-6 December come around hemoglobin dropped to mid 90, not swimming at all, sleeping 16 hours a day and pain all the time.

Sarah swum a 1.5 km ocean swim on the 15 December.

January come round a we couldnot stop the weight loss, lost 7 kg in under 4 weeks.

Sarah main symptoms were pain, sleeping all the time and anemia.

I would start weighting Grace daily.

Grace can't afford to loss weight like Sarah did.
 
:voodoo::voodoo::voodoo::voodoo::voodoo: There, a few more for you! Sending lots of hugs your way! No idea what else you can do - lots of cuddles and "patience"! :hug:
 
Update:)
Grace is good during the night. She's coloring at the table now. We'll see how the day goes.

So the scopes are a month away. Here's to waiting patiently.:voodoo:

I still will call the GP this morning and fill him in on my talk with the GI.:eek2:

To top this off we need to switch Grace and all of us to a new GP because ours is retiring the first of the year.:ybatty:
 
If you like him, tell him he's not allowed to retire :ylol2:.
:ybatty: Am thinking this looks just like me just now.
 
I dunno what I'm gonna do when my GP retires. He's 70+ and he's the only GP in the state whose advice and expertise I have any faith in. Only doctor I know who will actually spend an hour diagnosing you instead of just writing out pills for symptoms.

Farmwife if I were you I'd try to expedite that appointment at the university hospital you were talking about. What's the hurdle there..?
 
Oh my goodness - call that GI every 5 mins until he calls you back - or just go to the hospital - sending calm thoughts your way xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 
Muppet the hold up is insurance, timing of the scope, and for some reason in the state of Michigan every GI has a waiting list.:ybatty:

Ok muppet on to you avatar.:eek2:

I love it. I saw a poster with Kermit holding his riffle over his shoulder as Ms. Piggy is nagging him to death and his thought was,......... Pork anyone.:rof:
My hubby favorite pic.
 
I know how the waiting list thing goes. Here in CT every developmental pediatrician for 200 miles has a year waiting list, while apparently in the midwest you can just go to one the next day. We had a heck of a time with Izzy.

My avatar suits my personality, especially when dealing with doctors and their intransigent staff. :p

I'm so sorry to hear you've got annoying insurance. We're very lucky in that ours covers basically anywhere in the area we'd care to go. If we had to rely on the insurance my wife is offered we'd have to do everything at the hospital she works for. Such a pain.
 
Aw poor Grace. The worry alone has got to be tiring you also. I still cannot believe it is taking this long. If she were in the hospital she would be getting more attention. Rowan bleed for a month before her scope. Her hemo was 12 when in the ER for the first time and one month later she was an 8 for her scope. Bleeding was only during bm's at the time and once a day.

Where are you with the insurance deal? Is someone working on it? Did you talk to anyone about CSHC? A social worker would be a good place to start. Hugs to you. I would say her GI is a jerk.
nutkick.gif
 
Was just going through your thread again trying to "catch" up with all that poor Grace has gone through ~ :(
Just curious tho, what ever happened with the Barium Enema study that the GI ordered when you first met him back in October ? What results were there ?

And also, what has become of the Candida problem? Has she had follow up stool tests to check on the status of this? Or antibody testing ? Has it completely gone ?

Sorry for all the questions ~ just brainstorming and trying to help you put the pieces together :)
 
I haven't read through this whole thread, but I see that Crohn's Mom tagged me in this thread in regards to stuffed animal heating pads. Yes, I have 3 of them and I love them. :) The brand name is Cozy Hugs, and the animals look just like stuffed animals but are microwaveable. You pop it in the microwave, it heats up and it stays nice and warm for up to an hour or so. I like them because, unlike a traditional heating pad, there's no cords so they're great for car rides and things like that. You can buy them on Amazon (when you search for Cozy Hugs on Amazon, make sure to read the description - sometimes regular stuffed animals come up in the search along with the microwaveable animals, so make sure the one you get is microwaveable). I see you're in the midwest too - if you have a Menard's store near you, they also sometimes sell them there - that's where I got mine, and they're often on sale at this time of year (kind of random that they sell heat therapy stuffed animals at a hardware store, ha ha!). They're really cute, too. I have a cow, a lamb, and a cat. I have given several as gifts to friends with chronic health conditions too and they also really like them. Hope that helps and that your little girl feels better soon!
 
Glad she seems to be feeling better this morning, I'm still hoping and praying that the scopes get moved up sooner. Hope Grace has a good day.
 
Crohn's Mom said:
Was just going through your thread again trying to "catch" up with all that poor Grace has gone through ~ :(
Just curious tho, what ever happened with the Barium Enema study that the GI ordered when you first met him back in October ? What results were there ?

And also, what has become of the Candida problem? Has she had follow up stool tests to check on the status of this? Or antibody testing ? Has it completely gone ?

Sorry for all the questions ~ just brainstorming and trying to help you put the pieces together :)
Click to expand...


The study came out clear as far as they could see. However, Grace didn't pass the barium like most people, but they still took the after pictures. The note said she was parietal full of stool but other than that it's clear. Our GP wasn't impressed with that at all. But we have always felt her problem is upper GI.
Candida I was told by the GI is nothing and until you brought it up I totally forgot about it.

Update: Grace is happy and a "little" more spunky.
Haven't called GP yet. I'm torn about when to switch her. Do it now so IF the new GP doesn't work at least the old GP is still around to call and get help. Theirs about three GP's in town that specialize in kids like Grace and their Internist at our hospital. I like that! We'll see.:hug:
I think a new blood test might be worth it.
 
I'd be pretty eager to hear what her GP has to say about her lethargy and difficulty rousing the other day...
 
What a rollercoaster - I just can't believe that the GI was so 'meh' keep a close eye on her and if she looks like she is going down hill call him again and don't take no for an answer if you know what I mean!
Have you talked to your GP about changing GP's - is there one that he would recommend? then maybe switch now and like you say the old GP is still on hand for a few weeks if things don't work out?
big hugs xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 
Suzysu
Yes, he did suggest a new GP. We went to him 6-8 months ago. We weren't to impressed because he also said she was so young and we might just have to WAIT and see what it turns into.:ybatty: Well it's turn into a whole lot more. I'm willing to meet with him again and be more forceful about what we want. If he side steps the issues then we'll move onto another.
 
Ugh! I say don't bother and just go with a different one right out of the gate. Start calling the ones on your plan and interview them. Ask how many of their current patients are dx'd with IBD...that may give you some idea of their repoire with specialists and their exposure to GI issues...of course this is all still assuming Grace has IBD. I know our pediatricians experience with IBD and relationship with the specialist has certainly come in handy.

Oh and can I ask are you just looking at GP's or pediatricians as well. I would encourage pediatrician.
 
So sorry for all that you are going through.

My son started having joint pain at 2 and continued to fight joint pain and fatigue on and off. No one would look into it or take it seriously until he started having the diarrhea, blood, weight loss, and elevated lab results (9 years later). Until then, it was whatever they felt like chalking it up to at the time (growth spurt, mild ADD, etc). I knew something was not right but I couldn't put my finger on it. I would have never guessed Crohn's. I see that what he has now was probably festering at a young age, but without such clear markers no one could really do anything. It is a frustrating place to be ~ knowing that your child is struggling and not having a name for it.

I think the worst demons to fight are those that are unknown. It leaves a lot to the imagination. :(
 
Second the pediatrician .
Some hospitals have diagnostic pediatrician a who specialize in kids who have a few things going on:
In Grace's case asthma, allergy and gi
 
yes I agree go with another GP straight away - the one you swa 6 months ago is not worth bothering with even if your old GP reccomended him!
 
Talk to my head nurse about Grace and her tiredness.
We're to bring her in any time we notice the server tiredness.
They said they'll do the finger pricks anytime.
Try to incorporate more foods with iron.
We do already but I'll try harder.
Grace since birth CAN NOT take iron supplement. She vomits like clock work. So do I. We get our iron from foods. She and I have been tested and we are never low.

So onto the new GP.
I guess my hubby wants to try the one we went to last. We will tell him what we think and what we want. His reaction my hubby said we'll tell us what to do. We did like him last time even through he didn't get the seriousness, but at least he wanted to see her every two months for awhile. Now she has bleeding and more issues. We'll see if that has changed.

Update:
After a great day yesterday, Grace is tired again. More pale.
Tummy pains this morning but went a way after a while.
Her poo is soft to liquid again
Poo comes out now, even when she's trying to pee.
Well, at least she's not crying each time she goes, eh?
 
I'm not sure what the GP seeing her be tired will do for him/her, but at least they're not totally brushing you off.
 
I don't know what you mean muppet but...:shifty:

Our GP is going to do the finger pick to test her HB.
Is that what you meant or do I need to go take a rest?:D

Never mind a rest sounds nice anyway.:medal1:
 
I haven't gone yet. Ms. Pushy.:ytongue:
She's napping. AGAIN!:ywow:
Hubby's home so we'll all go together.
:heart:AWWWWW! Family time!:heart:
 
Ok now don't get mad crohnsinct. Ok, remember your husband's blood pressure and how you over eat when your mad.
My hubby ran out of time and we had to come home.
We will go tomorrow. OK

I do have some news. I will put it on a different thread. So future forum member can find it easier.
 
Number one rule of a chronically ill child is learning to travel, drive etc...
to the doctor 's alone without your DH.
Whatever is going on is going to take lots of visits which means it will become a necessity.
DS has over 5 specialist plus a pediatrician there is no waiting around for when DH has time. Otherwise DS would never get seen. So far this week he has seen 3 different docs .

You'll figure it out but getting to the docs when she is having symptoms is key and letting your DH work when he needs to also key.
 
Yes MOM (my little penguin) and DAD(muppet):ywow:

BUT...DH actually got time off to spend with his family, which being a farmer he NEVER does.
The 5 car pile-up on the road was unforeseen and making it to the doc wasn't going to happen it time.
My DH aging father who looks like his on a verge of a stoke needs help on the farm to start chores.
Seeing we weren't going to make it across town and not wanting his dear dad to die why he was working, we came home.
Remember my hubby loves my girl just as much as me.
He would have never come if he knew what the hold up would be.
I would have gone back to town if their was enough time. OK!!!!:thumright:
 
I'm still operating on the concern that your daughter has an emergency going on that isn't being addressed. Way too much weight loss, continued, apparently mysterious bleeding, and extreme lethargy make me wonder why she isn't in an ICU, to put it frankly.

Maybe I've got a totally incorrect picture of what's going on, but from here it sounds pretty nerve wracking and I'm worried that your doctor's apathy might be contagious. It's hard to stay worried when a lousy doctor is minimizing the seriousness of the situation and telling you everything's fine. I think a lot of us have been there and that's why we're concerned.
 
muppet, never take my "typing" as a lack of concern for my girl.

:heart::heart:I appreciate the knowledge, concern and the friendship I have gained from everyone here.
To the which I will never be able to pay back any of you the way you deserve to be payed back.:heart::heart:

I have also been through this awhile with her and perhaps I am laid back compare to some but I will get my answer whether a "farm wife rolling pin of defense" has to be used or not!;)

Thank you once again one and all.
 
Nonono not what I mean at all. Of course you're concerned. Its hard to not feel hysterical or like you should chill out or back off when the doc is downplaying everything, is what I mean. Sometimes its the doc that's nuts.
 
Hey Farmwife,
Just checking in. Sounds like you guys had a rough day. I had a question for you. I was speaking with a friend whose daughter is having very similar issues to Grace. She went through three GIs the third one is finally listening. Anyway she mentioned something which I wanted to ask if Grace has this issue. She said her daughter often does not feel when she has to poo and has accidents. I was wondering of this has ever been an issue?
 
Sorry muppet, I'm still trying to learn you personality. Your a shot from the hip kind of guy. Nothing wrong with that, just have to get use to it.

Charleigh, lost 4-5 lbs this time around. Took about 3-5 days. She's put 2lbs back on once I upped her shakes (Boost Kids). Grace is still a good size (weight) but our GP wants to keep her weight up for times like these.

Grace was tired but easily perked up. Good.
Docs tomorrow for finger prick and maybe labs, but I'm not telling Grace. Poor kid.

Then my Grandpa is having problems at his new home so Grandma needs some help. I will try all I can to help them. That will be good for Grace and Grandpa. She's his little angle. Just when I thought I'd have a slow winter.

Off for the night.
 
No kimmidwife she can tell when she needs to poo (Thank God) but...her urine accidents are a complete surprise to her. They usual happen around the constipation times.
Why, what did your friend's child find out?
 
They are testing her for Hirschprungs diseas(spelling?) I have not had a chance to look it up yet to see exactly what that is. But will probably tomorrow. Have to go to bed. Had a rough day. I will write about it tomorrow.
 
Yes kimmidwife that what they tested Grace for. and the PA who did the study said point blank, she doesn't have it. YA!


Update:
Grace had a great night.
Off this morning to GP's. Hopefully before the slush hits.
I can take snowy road, rainy road but icy slush scares me to death.
I hope to be back by the time it comes in.

Busy day, hope to be tonight or tomorrow.:eek:

Life once again is getting in between my forum obsessing.:sign0085:
 
So is she up? Is she dresses? Are you in the car? Are you saying we have to wait until tonight to find out finger poke results? Well, glad you told us because the delay in info would definitely have me thinking she was admitted.

Also, I can't get back on until tonight anyway as O's infusion is today and after that swimming. I won't be home until after 9 so you are safe from the wrath of CIC for a while. Cover me muppet.

DRIVING?! UGH! I have a long drive to our doc and infusions and of course infusions never coincide with appointments. Anyway, it is a fine drive but there is one part that is hair raising and it freaks me out everytime. Swimming actually got me over my hesitation with a lot of driving situations, then youngest with learning disability had to go to far away private school and now O and docs. It is amazing what we would do for our kids. HATE ICE!!!!!!

Have you left yet Farmwife?
 
crohnsinct said:
So is she up? Is she dresses? Are you in the car? Are you saying we have to wait until tonight to find out finger poke results? Well, glad you told us because the delay in info would definitely have me thinking she was admitted.

Also, I can't get back on until tonight anyway as O's infusion is today and after that swimming. I won't be home until after 9 so you are safe from the wrath of CIC for a while. Cover me muppet.

DRIVING?! UGH! I have a long drive to our doc and infusions and of course infusions never coincide with appointments. Anyway, it is a fine drive but there is one part that is hair raising and it freaks me out everytime. Swimming actually got me over my hesitation with a lot of driving situations, then youngest with learning disability had to go to far away private school and now O and docs. It is amazing what we would do for our kids. HATE ICE!!!!!!

Have you left yet Farmwife?
Click to expand...

:rof:
 
Farmwife,

Not that you need another voice chiming in but.....

Johnny lost weight like that too. He would lose 5 lbs then gain back 2 or 3 after feeling better and eating better. But the over all trend was weight loss of 3 lbs from 9 year check up to 10 year check up. Before that he was gaining 14 lbs per year. It was subtle to see him go from 97 lbs to 95 lbs over a year but considering he was suppose to be gaining as a growing child, it was unacceptable. What is her weight like from year to year? Is she gaining at each check up?

Hope the roads are better! I know those Michigan roads can be awful!

(((((Hugs)))))))))
 
Update:

No we haven't left.:redface:
The nurse called and they want her for an appointment TODAY.:ywow:
Not just a fly by visit. They want a pow-wow (brain storm) some possible changes.:blush:
I'm totally nervous. I never get nervous. What could it be???:shifty:
It did sound like they wanted labs no matter what.
 
It sounds like they may finally be taking this seriously and are ready to be proactive about whatever's going on with that poor girl. This can only be a good thing. Definitely get out there and let them do their thing!! :thumleft:
 
This sounds like good news! Sounds like they want to get to the bottom of this too. Maybe they will move up the scopes :thumleft: I'll be waiting impatiently for an update all day :shifty-t:
 
Still a good step. He can put some doctor-level pressure on the GI and light a fire under him, or maybe write you a pre-auth for your insurance to a better GI and get things moving.
 
Her HB is 11. Very good.

She slept from 7 last night till 7;30 this morning. Than nap from 10:45 till 2:30 Not good.

So, are you ready for the news my hubby has yet to hear?

Our wonderful family doc's head nurse, whom I love said (Doc was in other room with an emergancy).........Onto C.S Mott's children's Hospital!

They feel that Grace needs a team of docs to evaluate her.
They feel she would best evaluated at a large university hospital like Mott's.
She said they would prefers us to cancel scopes :eek:with the other GI because GI's are very picky on how they do the test and would not want Grace to be set back by that. It's better to wait an extra month and have it done to our liking. (SCARED)
She said that it's true that Grace might be "slipping into something" but that does not mean to let it go till then. She said we might still leave without a clear answer BUT we should have a direction and a picture of what it might be. I'm happy with that!

Ok, more or are you tired of reading? I'll tell you later. I'm tired of typing and Grace is having belly pains.

Here's a hint. They want Grace admitted!
But it doesn't mean it will happen so don't get excited till it does.
 
Well being that she is so constipated I really would think being admitted would be better to do the prep, then you know you can get the tube inserted, being that you cannot guarantee she will clean out like everyone would for a scope. If you get admitted you won't have to wait long for a scope at all. Rowan got her MRE 10 hours after being admitted to Motts. The hospital is very nice and doesn't have that hospital smell at all. Also when admitted there is a team... Like 8 people, Attending, Fellow, residents, and medical students. It all is pretty amazing I think.
 
Yay for moving on to Mott's! I think a team is exactly what you need. I know you don't necessarily want to be admitted, but it helps so much. I finally called and begged the GI to admit Ryan this summer. They did and in 5 days, we had a plan! It took until now to get it all going in the right direction, but being in-hospital, allows the team to brainstorm and come back to you as needed with ideas and for tests. Plus, you can rest a little knowing there are people a button away to help you!

I am so sorry that Grace (and thus you and DH) are going through all of this! Endless Hugs and Kisses!!!
 
Um O.K. I'll start (haha thought you were in the clear..nope! hubby home early and taking swim duty).

11? Well o.k. but our doc looks for at least 12. 11 not worth freaking out over but I would watch it and if she isn't admitted anytime soon bring her back for another poke.

Do NOT under any circumstance cancel scopes with current GI!!!!!!!! You still do not have approval from insurance company (and if I recall correctly that approval request was cancelled) to go to Motts. Do not cancel scopes until she is actually in the Motts building!

Better to wait an extra month than have to rescope? I would debate that but it is your call. With the weight she is losing another month could be detrimental. What about all that blood you were seeing? What about the pain. Wait another month? Thanks but no thanks. If she can't be seen by Motts until the end of January, I would take scope with current GI (and I am not his biggest fan). Things we Grace change drastically and although she may "seem" well now, I shutter to think what she will be like in a month...heck or even a week.

Admit? Yes! But where? Local hospital? Blech! Aren't they the people who sent you home twice (or was it once) already? Mott? YES! Do it! Do it now! Have you left yet?
 
I hope you get into Mott's soon. Being admitted sounds like a good plan so they can escalate the testing. Good luck!
 
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:
 

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