# Friday Update on Little Farm Girl



## Farmwife (Dec 7, 2012)

:heart:I hope you don't mind one and all that I start a weekly update on Grace.:heart:

:ywow:60 pages were sent to Mott's hospital for her second opinion. WOW. Keep in mind I forgot to give them my symptom journal. So now we wait to here.:shifty: 

We heard about a wonderful new GP for Grace. She has the reputation of being on top of test, hospitals, and insurance and not backing down in a fight.:dance: She's not taking new patients.:voodoo: Called my nurse she said, we'll maybe if I call they would reconsider taking her.:dance: So now I wait.:shifty::heart: Please pray she does take Grace.:heart: We have another name of a women doctor that might work also but I would prefer to have this one.

Our family doc wasn't happy with all her Miralax and senacot that don't seem to be working. He upped her Zantac and with in two days no more belly pains and we had to cut back her miralax also.:dance: Seems to be working like a charm. She's put on 2 lbs.

Also I started Grace on a homiopathic remedy for joint pain and it seems to be making a big deferents so far!:dance:


On the down side Grace got a cold that hit her way harder than us. But she's is recovering nicely but her tiredness is staying and her paleness has yet to leave. Labs haven't been done yet:voodoo:. I need to find out the hold up.

:redface:On a side note again:redface:
Sorry in my last thread for bailing out so abruptly. I guess the stress of it all got to me.:kiss: Mental break down is over and I'm back.:wink:


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## upsetmom (Dec 7, 2012)

Welcome back farmwife....:hug:

Glad things are finally going in the right direction.


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## dannysmom (Dec 7, 2012)

Hi. Good luck with the new GP and Motts. When Danny gets a cold it hits him MUCH harder too.


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## Stressed Mom (Dec 7, 2012)

Will send prayers your way in hopes this great sounding GP will take her on.

I hope her cold passes soon and she feels much better, my son is recovering from surgery so I can totally understand your stress level and send hugz your way.

I am new to the site but am quite sure you have no need to apologize, everyone here completely understands and I am sure were all very concerned about you and Grace.

It's a great idea to do a weekly update 

Welcome back and I am very happy Grace (besides this nasty cold) is doing better and gaining weight :heart: and that you also are feeling a little better :hug:


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## polly13 (Dec 7, 2012)

Farm wife glad you are back - I was thinking about you this morning and was worried that you hadn't been on in a few days.  Glad to hear grace is doing better with her belly pain and sorry to hear she has a cold.  
Hope you get your new gp I think if she hears your story she will take you on.  Hope you get your second opinion soon.

After the week we have had I can totally empathise with your stress level, 18 months ago we were going through what you are going through girl and it ain't easy, the not knowing is worse than the knowing in a strange sort of way.  By the way you are awesome you are doing everything humanly possible for you little Grace and you won't stop until you get answers.  Huge hugs to you and Grace.   Is she getting excited about santa - Lucy is beside herald with excitement at this stage.


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## Farmwife (Dec 7, 2012)

Oh my polly13, anything Grace see's the the store with a princess on it or that a princess needs she clings to for dear life and think she needs it for Christmas.
Then I made the mistake and pointed out that her birthday is next month, so now she thinks that from x-mass to her B-day should be continues presents given. GREAT!

How's your girl doing? It's so much fun to see holiday's through children's eye's again.


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## izzi'smom (Dec 7, 2012)

Here's hoping that you get in with the new doc...and I *LOVE* that Gracie is doing well...yay!!

I think that sometimes we all need to step back for a bit. I did For a while...it allowed me to focus on something other than my dd's disease.

At any rate, glad to have to here, fw...muah!! and :ghug:


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## muppet (Dec 7, 2012)

What's going on with the current GP's effort to get her into Mott's? Is the GI involved in that? Did you end up switching GIs? I've gotten a bit cross-eyed from all the updates on poor Grace.

Zantac is helping with her stomach pain, but how is her constipation recently on reduced Miralax?

Can you call the social worker who was helping you with the Mott's transfer a month ago and send him/her the symptom journal?

Is the scope still on the calendar? 27th?


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## Farmwife (Dec 7, 2012)

Hi muppet. now you know why I started a new thread. Everything has been given for medical review to Mott's. It's FULL panel review meaning more than just a GI will be reviewing her case.  Our family doctor is doing the review transferor NOT the GI from Devos. I have reasons for that and I'm good with it. The scopes are still the 27th. We will NOT be changing that. 

How's your girls doing?

Heading out the door for Grace to have a play date. YA


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## imaboveitall (Dec 7, 2012)

Hey FW :kiss:
So glad to hear that little dolly shall be getting a case review soon by a TEAM.
I'll be interested in what comes of it all.
I hate hate hate to hear /read about the preschoolers, dammit :stinks: 
It's sad enough with the overgrown galoots like V.

Get her anything she wants for Christmas :clown:
When V was first sick, she asked for parakeets.
I had to get a massive cage ya know. Not cheap.
She now says the make too much noise.


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## muppet (Dec 7, 2012)

Watch out on the spoiling the poor sick kid route. My 14 year old now has a minium $500 "buy-in" for Christmas gifts or she thinks we don't love her anymore. 

Kid has a laptop, iPhone (with internet plan, of course), desktop computer, expensive trail bike, name brand clothes... and doesn't understand what we mean when we try to explain to her about entitlement. 

My fault. Well I remember the year of the $100 Amazing Amanda doll, that I pulled from the shelf at Target seconds before a mother arrived on the scene and tried to wrest it from my hands by force . On Christmas Day Sarah removed Amazing Amanda from the box, turned her on, declared her "creepy", and put it in her closet where it remained until it was donated to Goodwill some years later...


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## polly13 (Dec 7, 2012)

Oh yea fw same here Lucy wants everything she sees, Disney princess, Barrie and my little pony are top of the list and the latest edition to the list is an iPad!!!!!!si she can play games...... Haven't caved yet but ther are still 2.5 weeks to go......... It's great to go and about this time of year and see the excitement in their faces helps to take the mind off the horror of ibd also and let them be like everybody else for a while .  Lucy is practicing for her play school nativity at the moment as well really funny!


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## Jmrogers4 (Dec 7, 2012)

Glad Grace is feeling better and putting on a little weight.  Hope she is over her cold soon.  Praying that you get the new doctor.
Little sad I never got to do the princess stuff I do have a niece who is 17 now, who had every disney princess dress they had at the time and a Dorothy from Wizard of Oz complete with Ruby slippers (I bought her the ruby slippers couldn't resist - I have a shoe thing).  
Although now I even miss the little boy things - hot wheels, army men, star wars, etc.  They only want video games, ipods and money.... I get sad every time a commercial comes on TV for some cool new "boy" toy.


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## muppet (Dec 7, 2012)

I never did get the boy I thought I wanted, so Sarah had to grow up with Matchbox, Transformers, and Star Wars alongside her Barbies, play kitchen, and ponies...


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## Clash (Dec 7, 2012)

Jmrogers, I can relate, C is all about his xbox and of course now, girls! I miss the days of matchbox cars and army men. I don't miss legos because they detroyed by vaccuum and my bare feet!! Legos were a case of my Mother always being right, I begged for them as a child but she refused because she'd spend all day finding stray legos everywhere, she was right C got them and I despised them. Play-doh would be another example of Mom's wisdom!


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## Jmrogers4 (Dec 7, 2012)

We did have a play kitchen and they both love to cook.  No Barbies however.  In fact at one point we were at my sister's who has 3 girls and there were naked Barbies every where.  My younger son James looked at one, covered his eyes and said "that is inappropriate!"  We all died laughing.


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## muppet (Dec 7, 2012)

Oh c'mon LEGOs can be a pain for parents but they are SUCH an educational toy, they really shouldn't be discounted.

Sarah has a ton of them, but I admit they do tend to sit in the closet most of the time. Every so often she is stricken with inspiration and goes to town with them. Less as she gets older. She had a Mindstorms LEGO robot kit which led to her joining the robotics team in middle school. Unfortunately our town doesn't have a "real" robotics team (First League) at the high school level to continue the experience for those kids...


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## Jmrogers4 (Dec 7, 2012)

Clash said:


> Jmrogers, I can relate, C is all about his xbox and of course now, girls! I miss the days of matchbox cars and army men. I don't miss legos because they detroyed by vaccuum and my bare feet!! Legos were a case of my Mother always being right, I begged for them as a child but she refused because she'd spend all day finding stray legos everywhere, she was right C got them and I despised them. Play-doh would be another example of Mom's wisdom!


And slime!  We did the legos, James (my younger son) was obsessed with them!  We still have 3 huge massive tubs of them and I regularly vacuum them up.  I was just saying to my husband I will be vacuuming lego pieces until they day they take me from this home.  He hasn't played with them in at least a year. He would get a set, put it all together then the next day take it apart and build his own design.  He does still like the architect sets and he puts those together and puts them on a shelf now.

Sorry fw seems like we hijacked your thread.  Again I'm glad Grace is feeling better


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## Clash (Dec 7, 2012)

Oh I completely forgot about slime and the elementary teacher that taught the kids how to make homemade slime, she obviously did not have mischievous kids as mine would abscond with ingredients(ugghh food coloring!!) and ziplock bags and have slime creating extravaganzas in their room!!!


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## Jmrogers4 (Dec 7, 2012)

:rof::rof:  Evil Teacher, probably thought I'll get back at you parents :voodoo::voodoo:


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## Tesscorm (Dec 7, 2012)

Oh my!  Homemade slime!!   I don't think my kids were so 'creative'  :lol:  (or, maybe I've just blocked it from my memories!  :lol

We did once find toothpaste all over the carpet, bed, etc. with Emily's and Stephen's arms covered in toothpaste beyond their elbows!!  Yet, no one knew how that toothpaste got on the furniture????? (They were about 3 or 4 years old... )


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## crohnsinct (Dec 7, 2012)

MOON SAND!  The cross I have to carry!  They didn't even have that when we were young (yes FW which was when Christ was a child) so no motherly warning on that one. 

3 girls here and we have every lego, matchbox and nerf gun known to man.  A princess wouldn't survive a day in this house!


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## Clash (Dec 7, 2012)

Awww...yeah Moon Sand...and bracelet beads, for J, we had like trunks of these beads that she would always beg for then they would sit in her closet untouched until a friend came over. It was a ratio of 2 bracelets for every 100 teeny weeny beads my vac ate up!!!!!


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## Farmwife (Dec 7, 2012)

I HATE PLAY-DO. There I said. I HATE PLAY-DO AND I DON'T LET MY KIDS PLAY WITH IT! MEAN MOMMY!:stinks:

So when my son started school I gave as a present to his teacher a large play-do play kit for him to do at school!

Grace had a great play time at McDonald's. At least this time she  didn't pee-pee:ywow: at the top of the slide again.:shifty:


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## muppet (Dec 7, 2012)

Oh God the beads. The beads, and the string everywhere. The string one of the cats swallowed, costing us hundreds in vet bills. (Almost as bad as the time my daughter's cat ate my exotic, poisonous fish. The cat recovered. The fish, not so much.)


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## jmckinley (Dec 7, 2012)

Yay   :dance::dance: for Grace feeling better. I hope the cold goes away soon! I will keep everything crossed that this great new GP is looking for a challenge and decides to take Grace. Glad for the team review at Mott's also! 

Don't worry about bolting for a bit :runaway: We all have those days when we feel smothered by it all and the instinct is to run! I'd be in Iceland by now if I followed my impulses!

Tess, this is for you in case you're feeling crafty!
http://www.sciencebob.com/experiments/polymer.php

Ryan had a kitchen, dishes, etc right along side the hot wheels, transformers, and legos! Boy, he could cook some good hot wheels! Clash, we are in the age of video games and girls too! I miss my little chef!


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## Clash (Dec 7, 2012)

jmckinley, C pretty much stays attached to the headset for xbox live, the only time he takes them off is to talk to his girlfriend, and rarely then because they mostly communicate by text.

If I have to hear one more time the best maneuveur to get your platoon in place for attack or how we need more MS points so he can purchase this hidden whatever...not to mention all the hollaring and jumping around, whoever said kids weren't active on video games has never seen my son play. He might as well be the soldier in battle!!!


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## my little penguin (Dec 7, 2012)

Glad she is feeling better FW
All Legos matchbox stars wars ninjago and dinosaurs here.
We Also had to stop major toy trip for large procedures .
Thankfully we stopped a few years ago .
We still give apps for the overindulgence iPod given at age 4 which he still has and kept in good condition 5 years later.


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## muppet (Dec 7, 2012)

At least your kid takes a break for video games. My daughter is online with her internet boyfriend so often that I had to bring back the computer time limits she hasn't had since she was 7.

I had one friend in High School. One. I did just fine. OK, not super happy as a kid, but I turned out all right. Most of Sarah's complaints and drama seem to come from having too large a social circle and unable to manage how popular she is. Boo hoo.


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## Clash (Dec 7, 2012)

Muppet that is my daughter and she hates drama!! She prioritizes friends by their drama level. But she is always on the go, when she got her DL she was constantly up and down the roads. Not C, he is either at his girlfriends house or playing xbox live, he'll make the occasional party, he says to keep up appearances HA!


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## Clash (Dec 7, 2012)

Teenagers are hilarious to me, their logic is so skewed at times, I keep thinking is that how my brain really worked at that age???


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## Farmwife (Dec 7, 2012)

Sascot is having a hard time on her thread just to let you all know!!!


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## muppet (Dec 7, 2012)

Sarah definitely SCORES her friends by drama level, but to date isn't terribly good at pruning the worst of them.


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## muppet (Dec 7, 2012)

Clash said:


> Teenagers are hilarious to me, their logic is so skewed at times, I keep thinking is that how my brain really worked at that age???


I maintain that teenage girls are far worse than teenage boys, based on the fact that there's no way I was ever as crazy at 14 as my daughter is. :dance:


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## Clash (Dec 7, 2012)

Oh yeah girls are all about drama and they are catty, luckily J wasn't every into to the cattiness but let a hair cut go wrong or weekend plans fail and she is full blown Drama Queen!

Boys, aren't catty, they don't hold grudges, and they seem to be way more laid back, easy come, easy go! Although, I do have to say C is way more high strung than J.


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## Tesscorm (Dec 7, 2012)

Chase and Stephen sound so much alike! :lol:  Although Stephen's lightened up a bit with the computer warfare, a couple of years back I do remember his stress and volume levels during 'wars'...  'left, left, left!!!!!  Coming in, coming in, coming in...  back, back!!!!!!"  :ybatty:  And, then, every once in a while, we'd hear the chair fly back as he'd jump up and knock the chair over!  We truly believe(d) his pre-diagnosis back pain was partially caused by his very tense, slouched over posture over this computer screen during wars!  

Emily... well, drama for sure...  again, outgrowing it 'a bit' but, there were times, you were afraid to look at her because you might be looking at her 'wrong'!  :lol:


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## Clash (Dec 7, 2012)

Haha Tess our kids mirror each other so much, the boys and girls!! 

Incoming...Incoming...sniper left...and yep the furniture has been all the worse for the wear. Oh and C has this pretty good size flatscreen that he will move from room to room with the xbox when friends come over. I'll walk in and there will be three flatscreens, two xbox and a laptop, and they'll all be shouting directives...insane!


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## Tesscorm (Dec 7, 2012)

Just remembered another memorable moment...  they were a bit younger, maybe 6 or 7ish, both were sitting in the back seat of the car, with their seatbelts on, with at least a foot between them... and one (can't remember which, but let's say Emily...) says *"mom, tell Stephen to stop looking out my window!"*  hmmm...  so??? Stephen had turned his head the wrong way???



Clash...  yes, OMG, the multiple screens!  And the one-on-one bonding, sitting side by side, through the computer! :yfaint:


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## Clash (Dec 7, 2012)

LMAO...and the ever classic..."*Mom C's breathing on me...tell him to stop looking at me and breathing on me!!!* Umm...ok C hold your breath and look away...seriously?


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## muppet (Dec 7, 2012)

Lucky for me, mine are 11 years apart. Sarah is more of an assistant parent to Izzy than an antagonist, and Izzy acts more like Sarah's kid than her kid sister. They're very good together.


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## Tesscorm (Dec 7, 2012)

I remember another instance when they both wanted the TV in the family room (we have like 5 tvs in the house!), they both had reason (sort of) for wanting that tv...  I tried everything to get them to compromise, etc. to no avail, so I finally told them I couldn't solve THEIR problem but, I could solve MINE and I sent them both to their rooms! :thumright:


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## Clash (Dec 7, 2012)

HA...same here and still a problems, when J comes home from college to visit, they fight over the playroom TV(same as you we have 5)!! I'll have to employ your tactic next time!

Lucky you, Muppet. That is how it was with me and my half sister. She was eight years older than me and toted me around on her hip and I adored and idolized her! Good times and sweet memories for sure!


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## Jmrogers4 (Dec 7, 2012)

Clash...  yes said:


> Texting your friend sitting next to you while 3 of them headphones on playing another group at another house - "Quit Shooting me!" "Get that weapon"


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## Clash (Dec 7, 2012)

Aha...yep Jmrogers sounds like you're on the same ride!!! "Quit shooting me!" haha I've hear that one a thousand times!!


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## Jmrogers4 (Dec 7, 2012)

I remember one time being frustrated with their constant bickering and wrestling and my neighbor was over her kids came running in from back yard to say Jack and James are fighting I look at the back door and they are once again wrestling around on the ground.  I opened the back door screamed "If that is the way you are going to choose to solve your problem, don't come to me when somebody is hurt unless somebody's arm is hanging by a string!" and shut the door.  The looks on their faces (as well as my neighbors)was priceless and they actually stopped. She was amazed that it actually worked, good thing she is such a good friend she could tell what kind of day it had been and went a brought a bottle of wine from her house to share.


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## Tesscorm (Dec 7, 2012)

Something that I found worked well (am just sorry I can't still do it! :lol was, when they were bickering about something, I would make them sit in the dining room, on the chairs with no armrests, pull the chairs out from the table so they couldn't lean on the table and they had to sit there (opposite ends of the table ) until they came to some sort of solution.  There was no set time, if it took 5 minutes - GREAT, if it took 2 hours - OH WELL...(never did take that long ).  More often than not, they actually came out smiling with a solution they were both happy with.  Sometimes, though, I did sort of feel sorry for one because you could definitely see who was the more forceful personality and who was the more accommodating.


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## Clash (Dec 7, 2012)

Same here, Tesscorm. I would employ a similar tactic but I would feel sorry that one was always more accomodating due to their personality. I think the other one was well aware at some point too as to just the level they could be forcefull and unaccomodating and still get the outcome that ended the punishment.


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## Tesscorm (Dec 7, 2012)

:thumright:


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## Farmwife (Dec 7, 2012)

Ready to get this thread back to Grace?????????
:dance::dance::dance:
I just got the message.......Drum roll PLease..........

The new GP would be HAPPY to see Grace. By the time we see her next week she'll be caught up on her case. 
:dance:HAPPY DANCE OVER HERE!!!:dance:


Oh BTW, my twin and I could finish each other's sentence. 
She would get mad at me and just stare :shifty: and I would YELL over and over again....
stop thinking that!!!!!
Drove my poor parents insane!


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## upsetmom (Dec 7, 2012)

That's great..:dance:


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## Jmrogers4 (Dec 7, 2012)

:dance::dance::dance::dance::dance::dance::dance:
Nothing really needs to be said. the dancing banana says it all.  Happy for you


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## polly13 (Dec 7, 2012)

Hey farm wife great news so glad you got that sorted


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## jmckinley (Dec 7, 2012)

:dance::dance::dance::dance::dance:

HAPPY DANCING IN ALABAMA!!!!


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## Sascot (Dec 7, 2012)

Wow, that was some thread hijacking .  Happy tired dancing over here for the new GP! :dance:


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## Catherine (Dec 7, 2012)

Happy for you all


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## AZMOM (Dec 7, 2012)

I'm holding all my dancing bananas for GI. 



J.


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## muppet (Dec 7, 2012)

Or Motts.


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## crohnsinct (Dec 7, 2012)

Farmwife said:


> The new GP would be HAPPY to see Grace.


Oh so she hasn't met you yet......I knew she would want to see Grace...just hope she realizes you are a package deal.  

Yeah, I will save my dancing pole and all for down the road a bit.  This doc has to earn it!


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## Farmwife (Dec 8, 2012)

crohnsinct said:


> Oh so she hasn't met you yet.....!


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## DustyKat (Dec 8, 2012)

Bloody Norah! This thread is just 24 hours old and I'm already lost! :lol: 

Okay, I think have I have this straight but I take no responsibility if I don't... 

You have a new GP that you are seeing next week.  That being the case I hope you are able to get solid answers and lasting relief for your little princess, bless her. :hug: 

:goodluck: and healing thoughts headed your way! 

Dusty. xxx


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## Farmwife (Dec 8, 2012)

Yes DustyKat you got it right.:thumleft:


Next thing I know my thread is being used for memories lane!:yfaint:

:lol2:


Have a good week-end everyone!:thumleft:


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## DustyKat (Dec 8, 2012)

Yay for me! :lol: 

No memory lane for this chickadee cause I have decking dementia! :eek2: 

Dusty.


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## izzi'smom (Dec 8, 2012)

Yay for sweet Grace!! :heart:


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## my little penguin (Dec 8, 2012)

Hope the new gp can push the new gi


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## Tesscorm (Dec 8, 2012)

Good luck with the new GP.   We switched Stephen's GP over the summer and i'm soooo happy - he's been so great!  Hope it turns out as well for you!! :ghug:


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## Farmwife (Dec 10, 2012)

Sorry early update because I'm so happy!

Called the new GP and the secretary made her appointment for NEXT WEEK!
The lady asked her age and what's going on and the lady said,.............
OH NO THAT'S TO LONG.
We're in tomorrow at 2.
BTW-This GP is well versed with auto-immune diseases or so said the secretary. YA!!!!!!


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## Jmrogers4 (Dec 10, 2012)

Fabulous news FW!


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## muppet (Dec 10, 2012)

So is there any news from the panel at Mott's? How will this transfer to the new GP affect that?


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## Farmwife (Dec 10, 2012)

ummmmm muppet, That their is a might good question. :ybatty:
I'm heading to the old GP to pick up her transcript and I'll have to ask.
No word from Mott's BUT we knew it was going to be a week or two. 
I'll have to get the new nurses on that one.:ghug:


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## kimmidwife (Dec 10, 2012)

Great news! Keeping my fingers crossed that he is good!


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## Tesscorm (Dec 10, 2012)

Great news!!!


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## AZMOM (Dec 10, 2012)

Push push push!! 

J.


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## izzi'smom (Dec 10, 2012)

Yippee!!!


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## Catherine (Dec 10, 2012)

Love gp secretary already.


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## upsetmom (Dec 10, 2012)

That's great news..hope all goes well


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## Sascot (Dec 10, 2012)

Fantastic news - you must have just about fainted!! :ylol2:.  Good luck with the appointment, the new GP sounds great.


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## jmckinley (Dec 11, 2012)

Yay! Sounds like this new GP might be the ticket!!! Keep us posted!


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## DustyKat (Dec 11, 2012)

Yeehaw! Fab news FW! 

Sending loads and loads and loads of love and luck that this may well be the turning point for your little Grace and she soon has lasting peace and relief...:ghug: 

Dusty. xxx


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## upsetmom (Dec 11, 2012)

How did the appointment go?


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## Farmwife (Dec 11, 2012)

:thumright:Good new GP appointment! Thanks for asking!:thumleft:


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## Crohn's Mom (Dec 11, 2012)

FW how did you like the new GP?
Was he/she compassionate and caring ?
Did they try and answer all of your questions ?

I'm so curious 
Please share when you have a moment ~
and let us know how Grace is feeling lately too ! :heart:
I'm sure you're busy with the holidays and life, but when you have time...it would be much appreciated by your online family


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## Momto2girls (Dec 11, 2012)

Good news! Sounds like things are on the right track?


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## AZMOM (Dec 11, 2012)

What did the GP say? Wait for the scope? What'd the doc think about her labs? What'd he/she say about Motts?

We're hoping for Grace that you see progress. You all have been in limbo too long......love your hearts. 

J.


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## Farmwife (Dec 11, 2012)

Thanks Crohns Mom,
It was a almost 2 hour appointment.
She was nice and Grace was a hand full. 
A princess she may think she is but a little stinker is what she is. A nice man asked her name and she said Cinderella.:blush: I told him the rest of us call her Grace.
My head is trying to take it all in.:redface:

Three thing for sure concerned her.....
1- Iron level - low
2- Past LDH levels being so high for long periods of time.
3- Mott's needs to be contacted every few days until we get the answers.

I'll type more about what she said after my endless research is completed.:voodoo:


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## Charleigh (Dec 11, 2012)

2 hours!  That is awesome.  It sounds like you have been blessed with a great new GP ~ how wonderful is that?  Hopefully this will be the person to really help you get to the very bottom of all of this and find real answers for Grace.  

I am so excited for you


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## polly13 (Dec 12, 2012)

That's sounds promising waiting for full update


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## Farmwife (Dec 12, 2012)

Alright, more info.

Update:
Grace no poo for two days and on Sunday had to to put a make shift brace to support her left leg. It was just to weak. Today is better. But she's still tired. 

The new GP was wonderful with Grace. Shes very kind yet intelligent and has an authoritative demeanor. I like her a lot. Her secretary is also on the ball.

She said at first she wasn't sue if it really is and auto-immunes problem.:eek2: (Started to freak mentally) However by the end she never mentioned that again.
She wants the scopes done. Mott's is a good idea. 
Not happy that Grace was on Zantack at 1 and no one tired to find out why.
She said to call Devos and find out if I need to take her off or Zantack (that's working, GREAT BTW). She said we want the scopes to see her inside the way they would be with out meds.
She started asking questions about her LDH and the pattern we've noticed and about her joint/weakness/pains in her legs. 
Asked if she drops things a lot. Yes she does but I guess until she mentioned it, it didn't seem odd. 
She asked about a history of these thing in the family and I said no one else has IBD in the family. She said NO, I mean auto-immunes of any kind. MS on my mother's side and my nephew MIGHT have it but were not sure. 
She asked more and when we finished I felt so scared because this was different. 
I said to her we are NOT the kind of parents you keep thing from. We would rather be prepaid and then thank the GOOD LORD if we miss it.
 She said MS. She said I'm not saying she has it but I think it's worth looking into it. No mom should have to put a brace on a leg to stabilize it! I agree.
So there you have it. I came home in shock and am praying she's wrong. 
I talk to my twin and she freaked (didn't mean to do that:ybatty about her son and maybe he does have it. I tried to tell her it's not for sure yet.

So know you know what I've been doing in the way of research.
She said that LDH = tissue death which can cause it to elevate in the blood when it comes from the brain or spine. She also mentioned spinal fluid diseases but MS was focused on more.
My hubby is home for a few hours and is going to take us out to town. Cheer us up. Going to do some x-mas shopping to.

Hugs to all:hug:


----------



## my little penguin (Dec 12, 2012)

Glad your new gp is on the case.
Hopefully answers soon so you can work to get her better


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## Charleigh (Dec 12, 2012)

I know it will be almost impossible not to let your mind go crazy with the mention of MS, but try your best not to think about it.  Focus on Christmas and doing fun things with Grace.  Find double joy in the good days!  You already know this and I am sure many here can remind you that sometimes you go through many possibilities before you reach an answer.  We were told possible lupus with E, then Jr. Rheum., then they thought they had it for sure ~ celiacs.  It turned out to be none of those. 

I will be praying for you to have peace and for you to get a solid diagnosis soon.  HUGS


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## AZMOM (Dec 12, 2012)

So did she order an MRI? Or refer to peds Neuro? Because of Claires ATM episode, she's closely monitored for any sign of new spinal cord and brain lesions. We've been down this path too. 

J.


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## David (Dec 12, 2012)

What was her specific vitamin D level (you mentioned in another thread she was low) and when was the test done?


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## Patricia56 (Dec 12, 2012)

It sounds like this GP is trying to look at the big picture. Which is really good.

I'm sorry her picture includes such a scary possibility. But it's better to know that to just keep on the way you were I think.

Hugs.


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## upsetmom (Dec 12, 2012)

Hopefully you get some answers soon


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## polly13 (Dec 12, 2012)

Oh farm wife I hope your ok- that can't have been easy for you. Am thinking about you and grace tonight give her a big hug from me and Lucy


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## imaboveitall (Dec 12, 2012)

FWife, thank you for the update.
I am curious as to what she said re: gut symptoms which would not be found with MS. Head MRI needs done if they suspect this.
Ask her about mitochondrial disease. Worth investigating. Also metabolic disorders.
I am thrilled she agrees with scoping her. WTF, I cannot fathom that the former doc refused.

That little dolly...another hurtful post I read today, this makes like...four?
I am really pissed that we all are in this place. Really upset actually. F**k this.

Much love :heart:


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## Farmwife (Dec 12, 2012)

David her vitamin levels were checked in Oct. 17th and her level was 28. Sorry I'm going off memory here ( I'll check later). It was low enough the she was surprise it wasn't caught yet.
She gave us Vit. D drops by the time we left.

The GP was very good and we trust her but never mentioned a MRI right off the back. Of course she was hoping that we would get to Mott's around the first of the year.
 I should find out more in the coming days.
Thanks for all your help.


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## Farmwife (Dec 12, 2012)

Yes bowels problems do happen with MS. Brain controls everything.
The study I read said they tend toward constipation.

Keep in mind it doesn't mean she has this! Come on Poeple, help me keep my sanity!


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## Farmwife (Dec 12, 2012)

muppet what have you done? :ywow:Was kermmy?:blush: Where's the gun?:shifty: You look like you type.:ytongue:
Thanks that just made me laugh!:medal1:


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## imaboveitall (Dec 12, 2012)

The type of bowel issues seen with MS are motility related, yes; as demyelination occurs and muscles can no longer work effectively.
But I thought Princess Grace's gut stuff was more pain, not eating, FTT etc. I probably have it wrong in my recall :ywow:


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## Suzysu (Dec 12, 2012)

:ymad::ymad::ymad::ymad:
Seriously FW how DARE you start a threat without telling me!! I didn't have time to check the whole forum so had been watching for forum emails like a hawk thinkking nouthing from FW there MUST be something wrong with Grace - worry worry worry - and here you are chatting away merrily :ywow:
I'm gonna have to seriously think about outing you off my friends list 

All that aside I am glad that my worries were not true and glad you have the referral to the new hospital, and glad the scope date is still the 27th, and glad Grace is feeling ok. How long before you hear back from the other hospital?

xxxx


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## Suzysu (Dec 12, 2012)

just caught up with the rest of the posts :hug::ghug:


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## Farmwife (Dec 12, 2012)

imaboveitall said:


> The type of bowel issues seen with MS are motility related, yes; as demyelination occurs and muscles can no longer work effectively.
> But I thought Princess Grace's gut stuff was more pain, not eating, FTT etc. I probably have it wrong in my recall :ywow:


No you don't have it wrong! Hubby and I keep thinking about every symptom and trying figure out where it all fits. Why does she have days of being normal and then days of symptoms? She had normal BM's and going almost day 3 of no poo.!
Questions, Questions, Questions.:shifty:
The fact of the matter is she need to be scoped and more to get the big picture.:heart:


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## Farmwife (Dec 12, 2012)

Thanks TangieC

This is the new thread. Not much has change from the confusion:yrolleyes: of helping my lttle girl.:yfaint:

Who has your kiddo been doing?:ghug:


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## Jmrogers4 (Dec 12, 2012)

Getting caught up and checking up on your little Grace.  Glad you like the new GP she sounds like she is on the ball and will get you answers.  Scary stuff to think about but try not to worry too much (we're moms, I know that is hard).  Concentrate on hugging that little cutie and spending time enjoying the holidays.  They are so fun at that age with their joy of all the holiday happenings.  Hugs to you


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## Charleigh (Dec 12, 2012)

Farmwife said:


> muppet what have you done? :ywow:Was kermmy?:blush: Where's the gun?:shifty: You look like you type.:ytongue:


:rof:


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## kimmidwife (Dec 12, 2012)

FW,
thanks for the update. i had a super difficult past two days myself. I will post in a new thread about it. As always keeping Grace in my prayers. My one big question if it was MS why then would she have some normal days with no medication or assistance? Kind of does not fit the big picture of MS. Just trying to look at the positives. :smile:


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## Farmwife (Dec 12, 2012)

kimmidwife said:


> FW,
> . My one big question if it was MS why then would she have some normal days with no medication or assistance? Kind of does not fit the big picture of MS. Just trying to look at the positives. :smile:


I holding to that! It doesn't make sense to me.
 Unless someone knows more about MS and is that normal at early stages?:yrolleyes:

My hubby and I feel that she thinks it's something and we'll go from there.:ghug:


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## Catherine (Dec 13, 2012)

They are doing trail on use vitamin d supplement for the threatment of early MS in Australia.    Still at the recuiting stage.  The aim is see weather vitamin d, is the reason why rates of MS in Tasmania (most southern state Australia) is up to 10 times higher than Darwin (far north Australia). Darwin lots of sun all year round, Tassie not much sun at all.

Just wondering out aloud about vitamin d and Grace.


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## Farmwife (Dec 13, 2012)

Catherine her vit. is low. She started vit D drops three days ago. I hope it helps perk her up to. Thanks


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## Catherine (Dec 13, 2012)

I am hoping along with everyone it not MS.  Just felt it was interesting in light of Grace low vitmain d that these researchers are looking at whether there is a link between vitamin d and MS.


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## izzi'smom (Dec 14, 2012)

Sending you love...:heart:

"Cinderella" :ylol2::ylol2::ylol2::rof::rof::rof:


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## polly13 (Dec 14, 2012)

How is she today farm wife sending you hugs from ireland


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## Tesscorm (Dec 14, 2012)

Just catching up FW...    I'm so sorry that you have to explore this path!!!  It's all so scary! :ghug:  But, keep in mind, many possibilities need to be explored to be ruled out!  Last year, Emily's blood results were a bit off and with Stephen's diagnosis, our GP sent her to a rheumi to rule out RA and/or Lupus...  a very scary time until it was RULED OUT!

Sending you lots of hugs and good thoughts!!! :ghug:  :ghug:  :ghug:


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## Farmwife (Dec 14, 2012)

Friday Update:

Since upping Zantac she's been doing a lot better.:dance:
Still constipated again and some rectum pain but overall I'm very happy.

My hubby and I feel a lot better about it not being MS but I know the GP still needs to explore those avenues.
What I liked about her (GP) is she came up with plans IF the scopes come back clear, It's nice to know that everything hopefully be covered.

Bad news, Nurse called Mott's and since were out of network we might be denied:redface: but she said we can reapply. Also doc came up with some back-ups.

Son and I have a bad intestinal bug. It makes me having this, that much more sympathies on all of the IBD'er.:kiss:

Love to all


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## jmckinley (Dec 15, 2012)

So glad the new GP sounds great! Instead of worrying about the possible diagnosis, I want you to be happy that this new GP sounds like she is going to explore every possibility! Leave no stone unturned! That's exactly what you guys need. 

Hugs and prayers for answers and some great days coming up! Enjoy the holidays!


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## Suzysu (Dec 15, 2012)

The new GP sounds great, fingers crossed Grace can get some answers xxxx


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## Sascot (Dec 15, 2012)

Wow, I had alot to catch up on.  Was missing you guys while in hospital.  Hope your bubble is staying in tact for now so you can enjoy the run up to Christmas and the day itself.  At least it's not long before the scopes now.  Sounds like the GP is great, nice to know she is being thorough.  Best to get everything checked then you can heave a sigh of relief when something is cleared!


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## my little penguin (Dec 15, 2012)

Just keep at it - you will get there.


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## Patricia56 (Dec 15, 2012)

There may be more than one thing going on so it's harder to sort out.

Our GI insists that abd pain like you are describing is due to stretching of the intestines - like you get from having a bunch of gas (think balloon) or constipation causing a bulge. Wonder if that applies to the pain Grace is having.

I used to keep track of sx with a checklist. It was a lot easier to just make a check mark or write in a number than have to write a bunch of stuff out. I don't remember if you do this already but if not you might want to try to do it now that her sx seem to be changing some. 

Glad she's feeling better since the Zantac increase. Hope everyone gets over the stomach bug quick.


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## AZMOM (Dec 15, 2012)

Re Motts - didn't Rowan's mom have some advice about secondary insurance for kids in your state that might help?  Just a thought......

I know you'll be glad for the 12/27 scopes. 

Hang in!  Hope Everyone at your house feels well enough to enjoy Christmas. 

J.


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## QueenGothel (Dec 15, 2012)

Just getting caught up on your thread. Glad to hear new GP is working well for your family.  Sorry that Motts might not get to help her though.  i think it is such crap you cant choose the best in the state if this is what is needed for her.  Idk what to do in the case except trying for the CSHC through the state.  Idk if they would have to be in network or not to cover it as a secondary it wasn't an issue for us bc they were in our network.

Graces scope is coming up quickly, I am very eager to hear what it shows.  Glad to get caught up on you and hear good news sorry I wasn't checking in.  I am sure you understand. 

Keep searching Farmwife your doing a great job. :hug:


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## izzi'smom (Dec 16, 2012)

Feel better soon, mama!!


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## DustyKat (Dec 16, 2012)

Thinking of you and your little Princess Grace hun and sending loads and love and healing thoughts your way...:ghug::heart::ghug: 

Dusty. xxx


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## Suzysu (Dec 18, 2012)

Hows things?? xxxx


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## Farmwife (Dec 18, 2012)

Thanks,:hug:

Grace is ill. On  FULL meds she at a 103 degrees for temp.
Waiting for new GP to call. I THINK it's the flu. 
Just kind of different. :shifty:
She's vomiting right after coughing for awhile. This has been going on since 5:00 am. Poor Kid!!!:stinks:


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## AZMOM (Dec 18, 2012)

Poor thing. Hopefully it's just a virus.


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## Farmwife (Dec 18, 2012)

The new GP called and wants her on TamaFlu (I don't know if I spelled that right). crohnsinct knows which one.

She doesn't want to run the risk of no scopes for Grace.

She scheduled her for Thursday appointment. She's a little concerned about the vomiting.
 She called the Infectious Disease (love this new GP) department and asked about the flu and they reported, it is starting already.

Have to go. Grace still doesn't like to vomit in bowls.:stinks:


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## crohnsinct (Dec 18, 2012)

Yep. Flu started here early and strong.  The good news is they think the vaccine they have this year is the right one.  Yep.  Tamiflu.  Remember though our ped told us it does tend to cause GI upset so if you see a pick up in diarhrea, nausea etc that could be the cause.  Our GI does not advocate Tamiflu unless confirmed flu because of the GI upset but that is for kids with a clear dx and no impending scopes.  

Poor pumpkin.  I hope she feels better soon!  I will just scream if the scopes have to be moved I could only imagine what you are feeling like.


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## Stressed Mom (Dec 18, 2012)

Awwww Farmwife  I'm so sorry things seem to keep piling up on you. Your such an amazing mom and very strong woman I have no doubt you will get poor Grace through this and feeling better soon.

Healing thoughts, prayers and hugz to you and Grace :hug:


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## my little penguin (Dec 18, 2012)

Since she has asthma she is at higher risk of complications.
Both boys had tamiflu because of asthma and the flu.
DS needed pred as well since his breathing got so bad.
Any trouble breathing make sure to call the gp and or head to the ER .
Asthma and the flu do not mix at ALL.

So in our case any GI upset is over ruled by the need to breathe and avoiding complications like pneumonia .

Hope she feels better


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## Sascot (Dec 18, 2012)

Oh no!  Poor Grace, hope the Tamiflu works really quickly so she gets better soon! The new GP does sound great - you deserve some good luck getting a really good GP!


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## Jmrogers4 (Dec 18, 2012)

Poor little Grace :stinks: Hope the Tamiflu kicks in quickly and she is feeling better soon, yep heard about the flu starting to hit around here.  I've been meaning to take the boys in for flu shots it just seems like everytime I think of it is about 11:00 at night.  We used to get a call from the ped office in September to set up flu shots since he was on aza but they have recently been bought by the local hospital so I'm imagining some things have changed.  Although I do like that they moved into the same building as Jack's GI, now his Ped Dr. is on the 4th floor and his GI is on the 3rd.


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## my little penguin (Dec 18, 2012)

Flu shots takes at least two weeks to start working.


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## Jmrogers4 (Dec 18, 2012)

Thanks for the reminder, maybe if I get them now and we are out of school for 2 weeks in 2 more days.  Think I should keep them home and not let them go anywhere or be around anybody :ycool:  I think they would drive me insane!  Well I think I will call the doctor, get them and hope they kick in before they are exposed.


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## Clash (Dec 18, 2012)

:ybatty:Ok MLP you are bursting my bubble with the two weeks to work info. C got his today, and I thought oh this will be great for all the holiday break family visits...the first of which start Thursday!!:ybatty:


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## polly13 (Dec 18, 2012)

Hope grace gets over this quickly hugs


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## my little penguin (Dec 18, 2012)

No more bubble bursting
I am done....


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## Clash (Dec 18, 2012)

haha...don't stop posting info MLP, you are my best source of info...I'll just put C in a bubble suit for the weekend!!! That way we'll have matching outfits, my anti reality bubble and his anti-flu bubble...you think they sell those at a medical appliance store?:eek2:


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## Crohn's Mom (Dec 18, 2012)

Hope she feels better quick!


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## crohnsinct (Dec 18, 2012)

No No No MLP...burst away!  You keep us all grounded! We tease because we love!  Don't you just wish we loved you a little less?


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## my little penguin (Dec 18, 2012)

with friends like you guys ....
who needs enemies:ack:

just kidding:lol2:

Can't get rid of my bubble bursting "PIN"
:hallo3: that easily.


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## kimmidwife (Dec 18, 2012)

So sorry to hear about Grace! Sophia and I have had this flu for almost a week already and it is taking its time going so it is good they are getting her on Tamiflu. Remember the sooner you start it the better it will work. It really does work. Hope she gets better real fast!


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## jmckinley (Dec 19, 2012)

Oh Farmwife! So sorry that Grace has the flu on top of everything else. I hope the Tamiflu kicks in ang she is better soon! She's gotta feel better for Christmas (and scopes).

Flu has been going strong here for about a month now. The private school actually closed last week and isn't having finals!


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## Suzysu (Dec 19, 2012)

Oh dear - Poor Grace and poor you - Hope things improve soon and fingers crossed she doesn't miss out on the scopes - sending big hugs xxxx


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## Crohn's Mom (Dec 19, 2012)

How's grace
Doing today? Has her fever broken?


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## Johnnysmom (Dec 19, 2012)

Hope Grace is doing better!  Let me know how Tamiflu  works for you, Brooke did not respond well at all.  

Praying she is feeling better by Christmas.  Hang in there momma and enjoy all that snow!  I am so jealous, Cincinnati has no snow


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## Farmwife (Dec 19, 2012)

Thanks everyone. Crohn's Mom tell me what your avatar is? I feel so stupid. I think I should know but I don't.


Update:

Questioning the flu now. :shifty:
Other children you would say virus of some sort, which it still could be but, the vomiting stoped, the fevers are still here and going higher.
 Her neck hurts and now she JUST started saying her tummy hurts, she hasn't poo'ed in two days. 
My son and I had an intestinal bug. That could be it BUT we never had such high fevers. 
My DH and I are a bit worried because her intestines don't work right.
 I already called the GP nurse and filled her in on the update. 
Never got the Tamaflu because the Drug store ran out of it. :voodoo:
I'm holding off on it because I believe she doesn't have the flu.
Nothing ever is simple.
 So when the meds are working she seems happy but not moving much and sleeping a lot.


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## Crohn's Mom (Dec 19, 2012)

The fevers are higher than 103?? 
I would take her in to the GP ASAP and not make a phone call. 

My avatar is a picture of a canvas that kids with crohns got to paint at the last take steps fund raiser we attended


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## Farmwife (Dec 19, 2012)

That's neat Crohn's Mom. :heart:
Yes fevers near 103 BUT I never let it go beyond and Motrin (I know it's not the best but it works quickly) and I alternate with Tylenol bring it down with in 15 minutes. 
The GP's nurse said (love the new GP) said call back in 4 hours. 
The GP is off today but the nurse is keeping her in the loop.
 I have an apt. tomorrow at 3 if need be. 
I'm still hoping this will all go away,:shifty: I'm also hoping to be a size 8 by Christmas too.:dance:


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## Farmwife (Dec 19, 2012)

Johnnysmom said:


> Hope Grace is doing better!  Let me know how Tamiflu  works for you, Brooke did not respond well at all.
> 
> Praying she is feeling better by Christmas.  Hang in there momma and _*enjoy all that snow*_!  I am so jealous, Cincinnati has no snow




:heart::heart:

Say the word Tiff and I'll pray with all my heart Y'ALL get this snow instead of us.:voodoo:

All though I would like a white x-mas but the scopes are two days later. So if it melted all by then I would be sooooooooooo happy.:dance:


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## Johnnysmom (Dec 19, 2012)

Is she very lethargic or some what playful?  Little ones can get high fever and still be pretty playful but if she is just laying around, no playing, eating, or doing much of anything I would get her in.  

Maybe it was good they ran out of  Tamiful, it made my daughter sooooo sick. 

(((((Hugs)))))


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## Farmwife (Dec 19, 2012)

Normally yes, but not playful right now. Next dose of meds need to be given.


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## Johnnysmom (Dec 19, 2012)

Maybe it is just her taking more time to get over the flu then??  I know Johnny actually had a harder time recovering before he was diagnosed.  His immune system wasn't suppressed by meds but he was so malnourished that it took him forever to get better.

Hope little Grace is better very soon.


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## my little penguin (Dec 19, 2012)

Bubble burster
Tamiflu typically works best if given within 
48 hours of onset .


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## muppet (Dec 19, 2012)

I do not understand why impaction and vomiting with a high fever are not being treated as a medical emergency. That your doctor hasn't got Grace in the ER or inpatient is boggling to me. This makes no sense. She's so small and these symptoms have been going on so long. That she wouldn't be at least under observation getting IV fluids makes no sense. A kid can't go days and days without passing stool, throwing everything up, without consequences.


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## Suzysu (Dec 19, 2012)

keep that GP appointment tomorrow to get her checked out - fingers crossed she (and you) have a good night. xxxx


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## my little penguin (Dec 19, 2012)

Is your Gi in Devos aware of the current situation ?
If not call asap


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## Farmwife (Dec 19, 2012)

No, I thought it was more a GP issue. 
But.....I'll be right back.


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## Catherine (Dec 19, 2012)

Does she have any other symptoms of flu?

Vomiting and high fevers in my middle kid are actually symptoms of a kidney infection.


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## Farmwife (Dec 19, 2012)

Called and waiting,

Her symptoms_
Fever on full meds at 100-101. With out up to a 103. I never let it go higher.
Legs pains, neck pains and cold (watery eyes, cough). Tired and grumpy now.
Any normal kid you would say virus.
I'm not to worried, yet.


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## my little penguin (Dec 19, 2012)

Good kid with a scope scheduled needs to have the Gi in the loop for any fever and vomiting
Add in constipation well...
Just make them aware


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## Farmwife (Dec 19, 2012)

Is there a chance the scopes will be canceled?
I'm hoping their's still time to get over this.
It's 8 days away. I will just CRY if it gets canceled.


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## Suzysu (Dec 19, 2012)

If it is a virus the likelyhood is she will get over it in time for the scopes - I think everyone is just a bit worried in case it's not a virus and maybe she needs the scopes and/or other investigations sooner - I think you should definatly call thet GI and also keep your appointment with the GP. Hope things improve soon xxxx


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## Farmwife (Dec 19, 2012)

Thanks,
GI nurse called and they wants an update on what her poo looks like when it comes out. She's updating the GI now. She also hopes it's a virus.

The GP nurse (love the new GP) call just to check in. She said the doc wants a call first thing in the morning. We have a big storm hitting tomorrow and the GP nurse said we can talk over the phone if we can't make it in.

Grace is still asking for food and drinking a little. So let's all hope this is a virus and she'll get over it quick. Oh, hope for poo with no blood!!!!!!!!!


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## Catherine (Dec 19, 2012)

It does sound like flu.  Does anyone else in the family have symptoms as well?


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## Farmwife (Dec 19, 2012)

No Catherine. No one but she was at Sunday school class on Sunday. So who knows!


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## EthanClark (Dec 19, 2012)

FarmWife, Can you let me know what natural remedy you have found successful for joint pain? We are trying the natural route with my 3 year old son Clark but haven't had alot of success thus far so we are starting EN on the 23rd to try and get him in remission before we consider the BIG GUN(methotrexate). He has Crohn's and also arthritis in his joints that he is constantly complaining about. The poor little guy is pretty miserable. Thank you for your help::ghug:


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## Farmwife (Dec 19, 2012)

I'll pm you EthanClark.
 One thing I started right away way rotating ice and heat. 1o minutes of icing the joint (for Grace it is her left knee) and 10 heating pad. I do this 2 or 3 times in a row. This was done in by my sports trainer when I was in volley ball. I believe it helps blood flow and aids in healing faster. Grace seems to enjoy it, until she no longer wants to set.
Also Tiger Balm, I use Icy hot rub works good for Grace. Some won't use it because it has NSAID's in it. I never use much and never use it after a hot bath. Tesscorm or Twiggy930 told me about this. Works great.


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## David (Dec 19, 2012)

You mention the neck pain.  Is she able to touch her chin to her chest or is her neck stiff?


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## Farmwife (Dec 19, 2012)

David
Yes she can move it with out pain.
She does say her brain hurts so I think it's a head ache (her first) and maybe a pulled muscle. But it was one of her first symptoms.


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## Sascot (Dec 19, 2012)

Really hope she gets better soon! I'm sure 8 days is long enough to get better.  I believe the main worry with anaesthetics is if they have a cough because they may cough with the tube in their throat.  My mom has had anaesthetics with sore throats/colds.  Keeping fingers and toes crossed for you!


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## Tesscorm (Dec 19, 2012)

I hope poor little Grace begins to feel better soon!!!   Praying that this doesn't have an impact on her scope date!!!  But love hearing your comments about the new GP - so glad she's on top of it!!


EthanClark - yes, my son used Tiger Balm when he had/has a sore back and swears by it.  FW, I'm not sure why you're saying it has nsaids in it???  Have I missed something?   Tiger Balm ingredients are below (just from Wikipedia...).  Did you mean the Icy Hot Rub?  I know Stephen also used Voltaren SPARINGLY which is also an anti-inflammatory gel which does have nsaids???


Tiger Balm Composition

Ingredient[3]	Red	White
Menthol	10%	8%
Camphor	11%	11%
Dementholised mint oil	6%	16%
Cajuput oil	7%	13%
Clove bud oil	5%	1.5%
Cassia oil	5%	 
The remainder is a petroleum jelly and paraffin base. The packaging label states that the active ingredients are menthol and camphor.
The original Tiger Balm Red and Tiger Balm White have 25% of Camphor.[4] A new product named Tiger Balm White HR uses Eucalyptus oil instead of Cajuput oil.[4]

And, repeat what FW said - do NOT use Tiger Balm immediately after a bath, can be very irritating to skin at that time.


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## Farmwife (Dec 19, 2012)

Maybe that's it Tesscorm! Who know any more. I'm just happy to remember my name.


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## Tesscorm (Dec 19, 2012)

Well... just as long as hubby remembers it, all is good!


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## Farmwife (Dec 20, 2012)

Grace is feeling a bit better.
She went poo last night and.......
this morning no fever! INTERESTING!!!!!:yrolleyes:
I'll still be watching for any sings of the virus.
 Last night I started with a cough and:yfaint:
 this morning I seem to be coughing up stuff but NO fevers.


Edit::ybatty: Just as I type this Grace is coughing up a HUGE amount. It's in her lungs for sure! Time to get her nubulizer out. I just hope I still have some meds for it!


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## imaboveitall (Dec 20, 2012)

Hey, Fwife,
just checking on Princess Grace.

Poor dolly. :heart:
I hope she gets a ton of great Christmas gifts


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## crohnsinct (Dec 20, 2012)

Did you take her to the GP today?


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## jmckinley (Dec 21, 2012)

Ugh! So sorry to hear that Grace has been feeling so bad! I hope she feels better soon...and while I hope it was a virus, I hope you do not have it!

(((Hugs!!!)))


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## DustyKat (Dec 21, 2012)

Oh my Farmwife...:hug:...I hope your little princess is feeling better. :heart:

How is she today? 

Dusty. xxx


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## Farmwife (Dec 21, 2012)

I'm officially worried.:shifty:
It's in her chest pretty bad.
She can still breath for the most part 
and she still wants to play but the coughing is starting to get physically hard on her.
 She's still coughing though, 
it's when it's stops that I need to be worried.
 I've been through this before with her.


Plus we're officially snowed in.
 We lost power last night and it's only getting worse.
 My hubby doesn't even know if the tractor will be able to get through this icy/slush/snow mix, :ywow: 3 feet of it and more coming.
So getting new meds for her nebulizer won't happen till early afternoon. Hopefully the new GP will be able to help. 
I would hate to end up in the hospital during Christmas. 
I'll be calling the GI too. 
Her fever has started to go up and this will be day two of no poo.:voodoo:
If scopes get canceled I will just scream.:voodoo:
BTW my son got the virus last night and I'm still feeling horrible.
We'll see what the day brings.:kiss:


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## Catherine (Dec 21, 2012)

Sorry Grace is worse.  Have you tried asthma releiver for the cough?  It may make her lungs a little clearer.


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## Farmwife (Dec 21, 2012)

Catherine what is asthma reliever?


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## Catherine (Dec 21, 2012)

Sarah uses ventolin, its a puffer.  Normally given to stop an asthma attack.  When Sarah has cold she uses her puffer to help with her breathing as it reduces the cough when exercising.

Forgive my spelling its after midnight and I can't sleep.


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## Farmwife (Dec 21, 2012)

OK, I thought that's what you meant.
 Yes Grace has meds like that, that we put in her nebulizer. She's to young to use a puffer. However.....she's out of the med or should I say it (Arbuterol) expired in April (bad mama).
 I'm calling GP to make sure it's OK to use. 
She out of Budesonide completely but that's more of a rescue med.


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## imaboveitall (Dec 21, 2012)

Oh Fwife :kiss:
I am sad to read this.
V was asthmatic from ages 2-4 and used a nebulizer but always needed pred to stop an attack, 3-5 days at 30mg.
Remember inflammation is a component in asthma, not just bronchospasm and sometimes the bronchodilators don't do it.
I got nervous just reading that you are snowed in with a tiny child who is in respiratory "distress" to a degree.
Will be watching this thread; may be a good idea for her to be in hosp as she can get a full assessment by a TEAM, scoped etc all in one admission. :heart:

Edited to add:
drugs are "good" up to 12mos post expiry.
Albuterol IS also a rescue med.


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## Catherine (Dec 21, 2012)

When sarah little we used puffer + spacer + mask which went over the face and nose.

We were told if any asthma involved with the cough the puffer will stop or reduce the cough.  Sarah has asthma but does not have asthma attacks (3 in total only) has constant cough without medication.

If she cough is worsing with exercise it could be exercise induced asthma.  Just thought from our experience with asthma and colds.


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## Farmwife (Dec 21, 2012)

Thanks imaboveitall, unfortunately Albuterol was the only med the doc felt safe enough to use on her multiple times a day, until her flares went away. Nothing else worked and she was only 1 1/2. She hasn't had much of a problem for 2 years. A flare up every now and then. We've been very fortunate.

I'm off to rest with my sick household. What a Christmas break!!!


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## Farmwife (Dec 21, 2012)

Catherine said:


> When Sarah little we used puffer + spacer + mask which went over the face and nose.
> 
> QUOTE]
> 
> ...


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## Catherine (Dec 21, 2012)

As the med can be used many times a day, its the same type of med as we use.

off to bed myself as its almost 1 am.


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## Suzysu (Dec 21, 2012)

Oh my goodness - I totally feel for you guys - If you can get through the snow can you get to see the GP? Maybe Grace should have some antibiotics for her chest - really need to make sure it is clear for the scopes.
I am hoping you all start to feel better soon and that the snow stops so you can get Grace her meds xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
(In the meantime try lots of steam inhalation to try to shift the mucus - it may make her breathing a little easier since you don't have the meds).


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## muppet (Dec 21, 2012)

Black coffee is a bronchodilater if she has an attack and you can't get out in the snow. It's no replacement for albuterol but it beats nothing. Sweeten it up so she'll drink it. It might even help her pass stool.

That kid should have been in a hospital a month or three ago.


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## Farmwife (Dec 21, 2012)

Oh my muppet!!!

You just brought back so many memories of my brother at age 5 drinking coffee. That's right 5! People would get mad at my mom or dad if they saw this and my dad would smile and say, doctors orders!!!
 I think that's why I'm addict to the stuff. I never got any till I was 18, dads' orders.


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## Suzysu (Dec 21, 2012)

My middle child (now aged 4) is on a beclomethasone inhaler (twice daily), and ventolin inhaler (when he needs it) both used with a spacer. He also has montelukast - with all of these he now only suffers when he has a cold - maybe Grace needs some of these? Your GP will know best but they have made an amazing difference to his life. - I am thinking of you guys xxxx


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## my little penguin (Dec 21, 2012)

Hugs....
Two things albuterol is the generic name for ventolin.
It is a rescue med meant to be given during an asthma exacerbation ( flare).
It is a bronchodilator . It can be given typically every fours hours.( talk to you doc)
If you see no response or improvement after 20 minutes of giving it head to the ER.
The ER docs can up the dose etc but monitor other things when doing so.

Buesonide is an Inhaled corticosteroid ( ICS) so is pulmocort / Flovent.
Pulmocort can be used with a neb Flovent uses a chamber mask.
These are used to reduce inflammation in the lungs  so the extra inflammation from a cold flu etc... Still let air in for asthmatics.
ICS has less side effects than pred since they only effect the lungs but take two-6 weeks to reach optimum levels.
Both are maintence drugs to prevent flares and can be used in infants.
They do not replace rescue meds since they take weeks to work.

Cough can be as serious as wheezing in an asthmatic. 
If the albuterol does not improve things she needs to go to the ER.

If she had the flu bad things can piggy back on it for an asthmatic so at least the gp needs to see her.
Again I am not a doctor just mommy advice so ask your doctor what is best for her case.


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## muppet (Dec 21, 2012)

Yep inhaled steroids used chronically are better for keeping the airway open during cold/flu season, and that's what I do. Albuterol can still be useful for an intractable cough, though, but typically shouldn't be the primary method of treating one.

I've never been totally clear on the consequences of using inhaled steroids when you have a bacterial resp infection but I imagine antibiotics are a must in that situation. I know you are supposed to rinse and spit after using one of those inhalers and I always do but many (most?) patients don't (and that's bad).


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## my little penguin (Dec 21, 2012)

http://www.cdc.gov/asthma/tools_for_control.htm


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## my little penguin (Dec 21, 2012)

http://www.healthychildcare.org/pdf/MedAdmin/AR_AsthmaAction0-5.pdf

Print these for your doc it explains asthma more


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## Farmwife (Dec 21, 2012)

Thanks all!


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## izzi'smom (Dec 21, 2012)

Just catching up/ sending along some love and healthy wishes...hope Grace is feeling her best soon and you and your son are doing better in time for Christmas (or well before ). C'mon power company, get farm fam some electricity~!


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## Farmwife (Dec 21, 2012)

Thanks the power came back on! YA!!!!:dance:
Thank God I had the frame of mind to fill the bath tub up.
Never, I say NEVER will I go with out flushing my potty on this farm.
My hubby teases me and says when have two big outhouse on the property.:voodoo:
I said good here a roll of TP and try not to fall in!!:wink:


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## kimmidwife (Dec 21, 2012)

Just catching up sorry I have been sick myself and have fallen behind. How is Grace feeling today? Does she still have fever? How is her cough?


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## Catherine (Dec 21, 2012)

Going ask the wonderful Dusty post what this puffer + spacer + mask looks likes as I can't work out how to post pictures ect.


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## DustyKat (Dec 21, 2012)

This is a paediatric one, hence the dalmatian face mask.


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## DustyKat (Dec 21, 2012)

Addit: The inhaler fits into the other end of the spacer.


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## Farmwife (Dec 21, 2012)

Thanks Dusty! That's just cute is a sad kind of was!

Grace's cough is better:dance: but.....
 stomach cramps have started up and liquid poo. :ywow: New for her.
Welcome to that time of year. I hope.:shifty:
The smell reminds me of c diff. I tell ya Mary, if you sent this to us because were State fans, your gonna get it!!!!:voodoo:


Scopes 6 days and counting!:dance:


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## Catherine (Dec 21, 2012)

We don't use ventilon as Sarah as primary treatment of her asthma cough now.  Both Sarah and my sister had these coughs as 3-7 years which were dx as nervous coughs.

But  a gp who Sarah saw as 8 year felt that it was asthma at that time she had never had an asthma attack.  She took ventolin 3 times a day  a month  to find out..  The cough went away and we moved on to seredite  her as maintenance ped.

My sister on the other hand had this untreated cough  her whole childhood with my parents being told she was putting on the cough.  She was always sick with colds, flu, etc.  When she in her 30s she referred to a chest? specialist who dx her the most severe case of asthma he has ever since in a person who had never had an asthma attack.

This is my family experience with asthma.


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## Catherine (Dec 21, 2012)

Glad Grace's cough is better.  No you can't move on with clear scopies without some other test that shows the rest of the small bowel.

Farmwife what are we hoping for?

Eg. Scopies find something bad but Grace get treatment and starts getting better.

Or nothing found and it not ibd disease which is great but Grace is still sick with no answers.


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## Farmwife (Dec 21, 2012)

Oh my dearest Catherine,
I hope for the best and plan for the worst. 
Her new GP is wonderful and I told her my fear of what if the scope come back clear. With all she's been through and the disappointment of not getting answers, that's a real fear. Not that, that would be a bad thing but Grace still NEEDS answers!!! She said theirs avenues then we will take. I also said what if they come back with "something". I'll need help deciphering the best choices for her. She agreed to take her on so that's a good thing.


So when I say I want clear scope it's because in my mind, maybe we can move onto something less scary. Make sence?:shifty: Sorry I didn't mean to upset you!:heart:


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## kimmidwife (Dec 21, 2012)

Fw,
Sending you and Grace hugs! I know what you mean about the scopes. It is so tough. I hope either way you just get some answers! Even if she does not have IBD you know we will always welcome you here so you better not find another forum to bug!


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## Catherine (Dec 21, 2012)

You didn't upset me.  

I think I maybe the only parent on here who reaction to dx of Crohn's straight after scope was relief.

The only little dent in my relief was having to wait while they ruled out cancer.:voodoo::voodoo:

Plus I dont want you to go anywhere.


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## QueenGothel (Dec 21, 2012)

Farmwife said:


> Thanks Dusty! That's just cute is a sad kind of was!
> 
> Grace's cough is better:dance: but.....
> stomach cramps have started up and liquid poo. :ywow: New for her.
> ...


I bleach everything.  Even this very iPad I am typing on.


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## Farmwife (Dec 21, 2012)

Myreinhard said:


> I bleach everything.  Even this very iPad I am typing on.


:ywow:

You just reminded my to clean my laptop.


I'm off for a few days. 
2 x-mas party, church, x-mas eve candlelit service, Dad coming to stay, 80 treats to put together for church, Christmas day and then two days later scopes! All this while being sick.:dance: Merry Christmas one and all.
 I bought (didn't have time to make it) Grace a fancy Cinderella dress.
 I'll take a pic x-mas morning and try to post it.:kiss:


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## Sascot (Dec 21, 2012)

Hope the cough and the liquid poo stop!!  Enjoy the parties, etc and try to have some fun inbetween everyone feeling ill.  It's the extra cleaning that kills me when someone is sick!  Amy's friend came round today (one day after having been throwing up) - she left and I ran round with my dettol spray cleaning anything she could have touched


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## Crohn's Mom (Dec 22, 2012)

Glad Grace's cough is better 

I am curious as to what prep was prescribed for Graces scopes ? And what day do you have to start it ?  
I am of course assuming that you have the prescription since it's only 5 more days 
It's always interesting to see which avenue different GI's take with little ones.


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## Farmwife (Dec 22, 2012)

Well Crohn's Mom they never sent it to me.
 I called 3 times and said it's still not here.:ybatty:
So here it is 2 in the morning (to sick to sleep,:confused2: going to the walk-in to get some antibiotics in the morning) and I'm going to try to get on Devos' site and see if it has an outline for it there. I have 3-30oz bottles of Miralax already. Hopefully that will be enough. 

Matter of fact if anyone has in detail what their children did can you give it to me. Just for a back up.

The next day there in the office is Wednesday. Her scope is Thursday.

I pray it comes in the mail today!


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## Lewiss mum (Dec 22, 2012)

sickness is not what u need riht now is it . bloody bugs... we were prescibed 8 senokpt for the am light foods a piecebof wchicken for dinner and clear soup then at 2 we had a prep similr to movicol but stronger thenbit was clear foods all he way till 10 pm the nit before then had to use the movicol type prep . they did it of lewis weight and heiht when we went for our pre op they gave us ours then i no when i had mine done i got it when the appointment came in the post. i would ring them monday as they should be open if not ring first thing weds and put grave on a clear broth diet and no coloured foods especially red and green the day before . i bet u cant wait for some answers so u can move onto the next phase . happy xmas by the wa .xx


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## AZMOM (Dec 22, 2012)

Two things....

1.  Catherine - I too was RELIEVED to have a diagnosis and a plan. So you're not alone on that one. 

2.  Farmwife - That GI practice will have someone on call - even for Christmas. If the office is closed Monday, there will be directions on how to reach the doc on call. They can tell you what you need to know. Don't let a closed office keep you from getting what Grace needs!

And..... I hope everyone at your house is taking a turn for the better. 

Julie

PS Vanderbilt children's just gives you a sheet of prep instructions. Everything can be purchased without prescription from the local pharmacy or even Walmart for that matter.


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## Farmwife (Dec 22, 2012)

I'm hoping it comes today, if not I'm calling the after hours lady and telling her what I need.
For crying out load all they have to do is e-mail it to me.

Grace seems better:dance: but more tired.
  She's lost to much weight because of this virus so I will be picking up some shakes for her.
Off to the Christmas Party. I'm so sick...... if anyone shoves a camera in my face......well you get my point.:voodoo:


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## my little penguin (Dec 22, 2012)

Yeah that !
They tend to call before the scope as well to find out how the prep is going.
We were emailed a prep sheet Gi signed off on but all over the counter.
There were two types one for little kids and one for older kids.
Even though DS was younger for the first one they still gave him the one for older kids since constipation was an issue.
Call email first thing Monday


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## Johnnysmom (Dec 22, 2012)

Farmwife, I can tell you what our prep was (same dr.) but Johnny was 11 at the time so yours might be different.

First 24 hours- stop eating seeds, popcorn, nuts, whole grain and high fiber.
Mix 4 capfuls of Miralax in 30 ounces of Gatorade 
No solid food after midnight

Second 24 hours Day 2
Clear liquid diet only
11am Take 2 Dulcolax Laxative Tablets (5 mg)
1pm Mix 6 capfuls of Miralax in 50 ounces of Gatorade
5pm (if older than 6 years) Take 1 Dulcolax Tab

If Grace can swallow little pills I would highly recommend you letting them know as it made the prep a lot easier. 

It also said 7 days before the procedure to stop taking iron supplements.  And 2 days before no anti-inflammatory meds but tylenol is okay)

I hope all goes well and you are feeling better soon!   We are sick too, no fun


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## Johnnysmom (Dec 22, 2012)

I just found my sheet that has instructions for 3-10 years
2 Days before:
Mix 3 capfuls of Miralax in 20 ounces Gatorade
1 Day before the procedure:
1 Dulcolax tab (5mg), can crush and give in applesauce

Mix 4 capfuls of Miralax in 30 ounces of Gatorade

My sheet had times written in based on the time the scope was but that should at least give you an idea of what to have on hand.


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## Crohn's Mom (Dec 22, 2012)

I would just like to insert my personal opinion here - 
There are probably a lot of us here that could give you the instructions on out our clean outs were ordered - however, I think it's highly important that you do NOT attempt to use anyone else's prep instructions for Grace and you ONlY go by her GI's instructions. 

Are you sure the GI didn't give you printed out prep instructions at the visit when it was ordered months ago- maybe you misplaced it? Or it's in your stack of records you keep and you didn't realize it? 
We have always received it the day of the visit before we left the office. And if we had to use movieprep or similar that required a prescription, then we were given the prescription at the same time.


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## AZMOM (Dec 22, 2012)

I agree with crohns mom. Get in touch with your doc!!!!!!!!!! Claire's docs instructions are tailored to age range. We have always received our instructions when the appt is made. 

J.


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## my little penguin (Dec 22, 2012)

Yes please talk to your doc . That us why they write the script of instructions specific to your child and their history.
The prep I described above is an adult prep not to be used in a child. You need to call your Gi office 
I don't see how you can have a scope scheduled with no prep. The minute they scheduled ours we were given an email that day.


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## Farmwife (Dec 22, 2012)

Don't worry one and all, I'll call Monday.
Thanks Johnnysmom
I just wanted to get an idea of what to buy at the store. 
I have NO desirer to go the day before Christmas!!! 
Our town here is a nightmare before Christmas.
To get out of the mall can take up to an hour. I'll never make that mistake again!


As for me, had to go to the walk-in; sinus infection, beginnings of a lung infection and adult croup is what I have. Have to go rest a while


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## Tesscorm (Dec 22, 2012)

Hope you are all beginning to feel better!  :ghug:   I agree that you should speak to your doctor to confirm instructions...  Grace's age, history, etc. may all factor into the doctors instructions.  Glad the scope was finally scheduled and is only days away but, having it during the holidays (and with the snow blowing!!!) does make it a bit more complicated for you   Thinking of you... :ghug:


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## QueenGothel (Dec 22, 2012)

We got our prep the day before via email.  They will send it to you.  Just call.  I think they went about Rowans prep totally wrong.  I was kinda annoyed with DMC another reason I am glad we switched hospitals.


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## Dexky (Dec 22, 2012)

I feel for you Farm!  Any kind of prep is gonna be tough with a 3 yr old. 




AZMOM said:


> PS Vanderbilt children's just gives you a sheet of prep instructions. Everything can be purchased without prescription from the local pharmacy or even Walmart for that matter.


It's funny J!  EJ saw Acra on Thursday and they scheduled his annual scope for next June.  They still sent him home with a bottle of "very low sodium" Centroma brand magnesium citrate.  Uhm, thanks…I hope we can find it in 6 months!


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## Momto2girls (Dec 22, 2012)

I think we just did like 10-12 capfuls of miralax -- one every hour for the entire day. I do remember seeing on the test results sheet, where they summarized everything, it said "cleanout: FAIR" or "prep: FAIR" or whatever and I was like, HELLO! I did everything you said to! (Totally offended, ha, ha!) GL! It really wasn't that bad.


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## Suzysu (Dec 23, 2012)

Freddy's prep wasn't as bad as I thought - but he was in nappies - which helped a great deal!!!! good uck and also hope you all feel better soon xxxx


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## kimmidwife (Dec 23, 2012)

FW,
Definitly call tomorrow. One thing have her avoid any red foods or drinks for several days beforehand that is important as they say it can falsely appear as blood in the gut.


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## QueenGothel (Dec 23, 2012)

Is she still loose now or is she back to her old constipated symptoms?  I hope this goes well.  It is tough getting a kid to drink all that and keeping food from them.  Rowan is kinda use to being NPO now.  Her preps are nothing bc of the jpouch now.  A jpouch prep is no food after 6pm and enema the morning of... That's it. Kinda crazy how quickly we can clean her out.  I hope all goes well and the get the pictures they need to get an obvious Dx.  Hugs and if I don't log on again.  MERRY CHRISTMAS!


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## Farmwife (Dec 23, 2012)

She's had no poo today. So hopefully it was just virus. She is getting sicker again with the cold.
I think to be on the safe side, I'm going to have to start the clean out on Christmas day. 
So by Thursday hopefully everything will be running clear. 

I just got thinking about how the nurses told me that after her barium enema she would have to poo right away. So two DAYS later and a lot of worried people she went poo. Better safe then sorry!

Since the kids and I am so sick I've canecelled most of Christmas. Well the party and my Dad coming over. No need to make them all sick and frankly I'm just to tired to do much.


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## AZMOM (Dec 23, 2012)

Did you get the instructions? Do they call for 48 hr prep?  Both my little one and my teenager started preps at 4pm the night before scope. 

Just want what's best for you and Grace. We are all well-intentioned souls around here but don't "go around" your doc and prep based on Internet advice. 

J.


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## my little penguin (Dec 23, 2012)

Yeah that ^^^
Everyone is different ours only started the morning before the scope.
It is very doc/child specific.


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## Farmwife (Dec 23, 2012)

Nothing in the mail. I'll be calling tomorrow. There closed until Wednesday but nurse will be there. They have to send it e-mail.

 Don't worry.....I know ya'll only play doctor on forums.


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## DustyKat (Dec 24, 2012)

@Catherine - Add me to the...Phew! what a relief we finally have an answer club! :lol: 

@Farmwife - I hope you get the prep instructions today hun. :hug: And roll on the 27th for some solid answers either way. Fingers, toes and everything else crossed! Your poor baby has been suffering long enough, bless her. :heart: 

Dusty. xxx


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## dannysmom (Dec 26, 2012)

Good luck with the prep today. I hope you are feeling better today.


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## my little penguin (Dec 26, 2012)

Good luck on prep


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## Farmwife (Dec 26, 2012)

Operation prepping Grace


Went through all my mail looking for something else and guess what?????
There was the prepping instruction from Devos. MY BAD!:blush:

Start of day two and she HATES IT ALL! 
Threw up at the table. Tummy hurts and NO POO YET!:ywow: 
Just sitting here waiting for the damn to break.
 I have to call Devos today and find out if the clean out doesn't happen to their liking is there something they can give her when we get to the hospital tomorrow.


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## Sascot (Dec 26, 2012)

Poor Grace! I'm sure they could give her an enema at hospital once you are there. So glad it's finally got to scope day tomorrow!


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## Tesscorm (Dec 26, 2012)

Good luck!!!!!!  I hope she can get through the clean out successfully!!!  Ugghhh! :ymad:  Stephen had a really horrible time with the prep, vomiting, tummy and anal pains, ended up having two or three enemas and, by 2 am, the nurse (he was inpatient at the time) still didn't think he'd cleaned out enough...    They thought it was because he was backed up (this was pretreatment).   

I don't know if this is commonly done :redface: but as this scope is soooo important, if you don't see that she is cleaned out by tonight (ie late, late...  2, 3 am), perhaps it would be worth taking her to ER to have them use enemas to ensure the scope will be successful???  IDK, just a suggestion???  If you haven't called Devos yet, might be worth asking...


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## Farmwife (Dec 26, 2012)

The damn broke! Followed by vomiting! Now she's tired! Off and on the potty.


 I did call the nurse and she said we might have to add three more cap fulls of Miralax.
 It all depends how much she goes now. Here soon she gets 4 cupfuls of Miralax in 30 oz. of Gatorade. 

I don't understand why kids this young don't get cleaned out at the hospital. You can't tell me it's not a traumatic as vomiting and your mother forcing you to drink all this stuff.

Sorry a little stressed.:wink: The nurse also said if they feel she's still fighting her cold they'll call it off. So know I'm worried because we'll get down their and she'll start coughing and they'll say NO to the scopes.


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## Johnnysmom (Dec 26, 2012)

Ugh!   It is so traumatic for them.  I remember how horrible Johnny felt.  But you are almost there!

Johnny never got totally cleaned out.  They found some stool during the scope but were able to see what they needed to.  Just do the best you can mom 

Hang in there.


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## Tesscorm (Dec 26, 2012)

Praying for you that doesn't happen!!!! :ghug:


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## my little penguin (Dec 26, 2012)

Hugs clean is hard.
As far as the cold - and no scope
Even though she really needs the scope 
A compromised respiratory system Ana anethesisa is not a good combo
I have watched the conversation in the waiting room of crying parents because their kids could not be extubated due to respiratory distress.
Good luck


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## kimmidwife (Dec 26, 2012)

If it is just a leftover cough, ( which can drag on a few weeks after a cold) and she is otherwise stable they should hopefully go through with it. The clean out is certainly no fun 
 but hopefully the worst is over. The good news is the scope itself usually is much easier then the clean out part. I do agree with you though about admitting young kids the night beofre to do the clean out in the hospital it would make it a lot easier. However I guess our insurance companies would not care for that plan to much LOL. Good luck, thinking of you guys!


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## Farmwife (Dec 26, 2012)

Grace has been throwing up for a couple hours now. Lots of yellow coming up. 
Also her cough has picked up which I think is because she's so worked up.
 My hubby thinks it should be canceled because of the cold and cough.
 I can definitely say if she was at Devos now they would say no to the scopes but otherwise I think she could do it.

I'm calling the GI nurse soon. This is so frustrating to be so close but so far.


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## Sascot (Dec 26, 2012)

How very frustrating!!   I wish I could make her all better so she can go get the scopes done with no problems.  Thinking of you both!  I agree it is bad they are making you do this at home - at least in the hospital it's the nurses "making her drink that stuff".  Hope the cough goes away soon!


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## crohnsinct (Dec 26, 2012)

HA!  Not our hospital!  O was inpatient and our nurses hit and ran.  Left me in the room fighting, negotiating and bribing O to choke it all down and then dealing with her throwing it all back up. Oh they were sure to tell me what a great mom I was and how good I was at taking an active role in her care.  Tranlation "sucker...thanks for doing our job"

So mad I didn't know you all back then.  If I did, I would have been smart enough to tell them to put in an ng tube and be done with it. 

Keep us posted fw.  This is definitely the worse part the young ones, so young who have no understanding of what is going and the teenager with their wills of steel and death stares.... It all sucks!


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## crohnsinct (Dec 26, 2012)

I am so sorry she is so ill but be prepared for the long drive down and fighting that horrible city only to be told no scopes.  I can't imagine they would just cancel them without seeing her first so they could truly judge the situation.  It would be a huge inconvenience for you but silver lining is she would get in front of that doc one more time and maybe just maybe he would have another trick up his sleeve.


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## Farmwife (Dec 26, 2012)

:dance:GI ORDERS!!!! Grace is to come in no matter what!:dance:

So there you go, big bad city here I come. :voodoo:

My son is running a high fever again so hubby will stay with him and my twin will come with Grace and I.
 Girls trip!!!!
 I wonder if we'll get lost and end up at the two story mall down there? :rof:


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## izzi'smom (Dec 26, 2012)

I'm glad she has to go...this way she isn't doing all this for nothing. 
Sending <3 and bunches of luck...can't wait to get it done and over with!
I know prep is torture, sorry mama!


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## Johnnysmom (Dec 26, 2012)

:dance::dance::dance::dance::dance::dance::dance::dance:


Good Call G.I.!!!!!!

Grace needs some time and attention asap from those Doctors!

Have a save drive and don't forget that rolling pin!!!


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## my little penguin (Dec 26, 2012)

Woohoo!!!
Good luck on the trip 
Just get lost at the mall on the way home after you have answers 
Shopping therapy is approved and needed often


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## Crohn's Mom (Dec 26, 2012)

Good luck! 
Is she having an upper and lower done?


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## Stressed Mom (Dec 26, 2012)

Wishing you and Grace all the best tomorrow :ghug:


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## QueenGothel (Dec 26, 2012)

Good luck I am hoping you were able to get the prep done and she is pooping clear. Keep us posted. Hugs to you Farmwife!


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## Farmwife (Dec 26, 2012)

Crohn's Mom she's having both.:rosette2:

I don't know how good of a clean out it was. 
She vomited a lot. She was suppose to be done by 4 but we finished at 7.
 I tried but I think her tummy can only take so much at a time.:frown: 
At least she was smiling when she went to bed,:rosette1: so she doesn't totally hate me!:ack:
She has poo'ed one more time and it looked clearish. So that's good. :thumleft:
Her tummy looks HUGE but she hasn't complained of tummy pains lately.
They had me give her a full Senokot tonight so we'll see if that does anything.

Have to go and pack for tomorrow. For a one day trip I pack at least four bags. I leave the rolling pin close by the drivers seat.:ack:

Good bye and I hope to talk to you all soon. :shifty-t:


:soledance:


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## my little penguin (Dec 26, 2012)

Have safe trip 
Update when you can Friday


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## Jmrogers4 (Dec 26, 2012)

Have a safe trip, sending loads of love support and prays your way. I'll be on pins and needles waiting to hear how it all went


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## Farmwife (Dec 26, 2012)

HELP!!!!!


Grace just started some serious cramping!

If they last for awhile I will be calling the GI on-call.

_* I just want to know does this happen during clean out???*_


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## muppet (Dec 26, 2012)

Call the on-call now. Severe cramps are bad news. With mild cramping you could just slow the prep but for severe distress you should call.


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## my little penguin (Dec 26, 2012)

Yes yes and more yes
Still call though to get the Gi take since this is new for her
DS was curled up in a ball on the floor crying at one point last clean out .
We did update the Gi though and were given instructions what to do


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## my little penguin (Dec 26, 2012)

Don't wait call NOW  since you said her stomach was distended as well .


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## kimmidwife (Dec 26, 2012)

Caitlyn also had some bad cramping last clean out but as MLP said call and tell them especially with a distended stomach. Keeping my fingers crossed that everything will go smoothly from here on out. Sending hugs to you and Grace.


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## QueenGothel (Dec 26, 2012)

Rowan gets the cramping too but not usually from drinking it but from enemas.


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## QueenGothel (Dec 26, 2012)

Ohh wait I remember magnesium citrate causing some major cramping but once she pooped it was gone.  I don't know what your prep is.  Just an FYI I think it said it on the bottle also.


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## Catherine (Dec 26, 2012)

How Grace?  Wishing you all the best.


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## AZMOM (Dec 26, 2012)

Did u reach anyone? We're all thinking of you all. Hoping Grace feels better and gets what she needs. 

J.


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## Stressed Mom (Dec 26, 2012)

Poor Grace  I really hope she is feeling better......sending many many hugz, prayers and best wishes :ghug:


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## upsetmom (Dec 27, 2012)

Good luck ..i hope things settled down


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## Sascot (Dec 27, 2012)

Good luck! Thinking of you. So glad the Gi told you to go in no matter what!


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## polly13 (Dec 27, 2012)

Good luck today farm wife thinking if you and grace


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## Dexky (Dec 27, 2012)

I hope things are getting better for her!  Any news?


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## Farmwife (Dec 27, 2012)

:dance:Grace slept good last night. The pains went away!
 She's happy and dancing around this morning on her :dance:glass (plastic) slippers.:hug:
She however is the ONLY one in this house that's motivated.
My DH, DS and myself are just to tired to care much.
Funny...she's the one that's going through all this but we're the ones suffering!!!:voodoo:


Heading downstate in a couple hours. We will be technology free. 
We have no smarty pants phone or gadget thing-a-ma-bobs to communicate with. Ya know like the OLD DAYS! 


:ghug:


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## Catherine (Dec 27, 2012)

Glad Grace is happy.  Drive safely.


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## Dexky (Dec 27, 2012)

I hope the snow's not an issue for your drive!  Good luck today FW and Grace!


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## AZMOM (Dec 27, 2012)

Drive safely and I hope all goes well.


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## Momto2girls (Dec 27, 2012)

Good luck and be safe!


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## my little penguin (Dec 27, 2012)

Good luck
Have a safe drive


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## Tink572 (Dec 27, 2012)

Thinking of you all today!  Good luck with the scopes.  Have a safe drive.


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## Johnnysmom (Dec 27, 2012)

Good luck and drive safely.

So happy to hear Grace is feeling good this morning. 

Well done mom!


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## kimmidwife (Dec 27, 2012)

Good luck and drive safely! Be waiting anxiously to hear your update!


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## Tesscorm (Dec 27, 2012)

^^^  Ditto all the abov e ^^^  Hope all goes well and you leave with some answers!!! :ghug:


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## muppet (Dec 27, 2012)

Good luck with the scopes. If you're still sick, you might offer to wear a mask while you're in the outpatient surgery area. Some of those kids might be very susceptible.

I hope Grace gets some answers for this long, long road she's been on.


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## crohnsinct (Dec 27, 2012)

Good news and B.S. I know your sister has one of those fancy pants phones...you used it when you spilled water on your laptop and since she is driving you we expect hourly updates....Just kidding...you can update us every other hour:tongue:


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## DustyKat (Dec 27, 2012)

^^^^:lol:

I hope all goes well today Farmwife and you are able to get solid answers for Grace, bless her :heart: 

Good luck and be safe. :ghug: 

Thinking of you all and sending love and well wishes your way. 
Dusty. xxx


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## EthanClark (Dec 27, 2012)

FW-Good Luck to Grace! I know this is hard with such a little one. I am hoping for great results. The little princess will be in my thoughts. I am also hoping that she comes out of anethesia well. The first scope with Clark was horrible as they gave him versat before to calm him down. He was very disoriented when he woke. Second time no versat and much better after. Lots of hugs :ghug:


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## QueenGothel (Dec 27, 2012)

Waiting patiently...  (Tap tap tapping my fingers).


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## DustyKat (Dec 27, 2012)

^^^^Amen to that! I'm glad you posted Mary cause my brain goes into meltdown every time I have to think about the time difference!


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## muppet (Dec 27, 2012)

Yep it's nearly dinner time. We know you have your sister's smartphone anyway, FW. Time for an update on that scope!!


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## DustyKat (Dec 27, 2012)

See, Friday morning here. Little wonder my brained is smashed. :lol:


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## Farmwife (Dec 27, 2012)

We're back. Be on in awhile. Grace is not feeling well!


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## crohnsinct (Dec 27, 2012)

Another shameless ploy to get more views of your thread!!!!!  Go ahead.  Take care of Grace.  We will wait.........


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## my little penguin (Dec 27, 2012)

^^^^ yeah that


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## Farmwife (Dec 27, 2012)

Started two hours late.
Lasted an hour .
The doc come and got us.

Upper GI looks good. No active inflammation. Relieved and shocked all at the same time. I felt this was going to be the area of problems.

Lower GI. Colon and rectum showed no active inflammation but......rectum has some scarring.

I was going to start questioning the GI but Grace started to have problems coming out of sedation. So I was with her trying to get her to wake up and breath normal.

My hubby asked about the bleeding and the GI said if it came from her stomach he would have seen it for sure.
The GI took 6 biopsy. They should be back in 7-10 days.


OK, so here's what I need to know.........

If the bleeding and pains are not coming from her stomach, where in Sam Hill is it coming from?

The scarring in the rectum........... How did it get there?

Can you have active inflammation that goes and comes without leaving scars or problems.


Let me line list here symptoms to put everything into perspective. 

Belly pains-Ongoing
Right flank pains-Ongoing
bloating-ongoing
constipation with soft stool-ongoing
Black blood and stool-Past
Joint pains-Ongoing
Eye pains-Ongoing
Skin rashes
Low wbc
HIGH LDH Total- Off and on for months at a time.



Things my hubby and I know for sure!!!!!
She did bleed. She is in pain. She is tired to much. We are not making this up.

I wished I had had more time to question the GI but things got in the way.
I will be calling Grace's GP tomorrow to fill her in. 

I will also be calling the GI on Monday to state what we want done.

Here I thought my hubby would be happy but he is even more worked up than me.:eek2:

BTW-Hubby went with me at the last minute. So no smart phone!


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## Momto2girls (Dec 27, 2012)

Glad you're back safe & sound!! I am not an expert but I will say that just b/c it LOOKS OK (except for the rectum) doesn't mean it is. The biopsies could show the inflammation -- which is what happened in our case and isn't unusual at all. So, it doesn't mean you're in the clear just b/c they couldn't see it today.

I don't know much about the rest. But hang in there and take care of your cutie!


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## my little penguin (Dec 27, 2012)

Hugs....
Glad it's done
The biopsies will be the key - they always are.
DS scope last sept showed no visual signs of active inflammation.
But ...  Biopsies told a different story. Gi actually told us right after the scope no colitis and once biopsies were officially back we could start med xyz for functional disorder or we could start it then and there since he was sure there wasn't an Ibd issue ....
We decided to wait .

As far as scarring it mAkes sense with her issues
Proctitis does not raise sed rate or crp
There are many different causes Ibd being one of them.
There are other causes .

Inflammation can wax and wane all on its own without treatment even in someone so young . As the disease becomes more active there are less periods of calm.

You can bleed from constipation . You can have a functional gut disorder and be in severe pain but not have structural damage to the gut.
You can have food intolerances which also cause severe pain and bleeding but not be Ibd.
Did she have any oral pred at all in the last 7 weeks ?
DS first scope three years ago was completely clean because of pred taken prior- Gi didn't realize it since he didn't prescribe it kwim.

The biopsy wait is long
Did the Gi give a date for a follow up appt to discuss the biopsy results and what the plan would be ?
Hugs


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## Farmwife (Dec 27, 2012)

No pred for Grace. BUT she is on full Zantak. She that might explain the normal stomach lining, RIGHT?

As far as food allergies. We tried for YEARS to figure this out. We would take a food away and she would seem to get better, than BAM she was worse again!!! Over and over we went with different foods.


Also mlp the blood she has is almost black not bright red.


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## Tesscorm (Dec 27, 2012)

I'm glad it's all over with but I'm sorry you didn't come away with firmer answers!  I hope the biopsies give you those answers!

I hope Grace is beginning to feel better! :ghug:


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## my little penguin (Dec 27, 2012)

IMO Zantac would not heal the stomach . It reduces acid not eliminating it.
Prevacid or another ppi at a high dose maybe.
Any abx ?
If it was h pylori then maybe it fixed it .
Doesn't really matter since in the end the biopsies will tell the story of what is really going on at least in the colon and small bowel 
You said they only took 6 biopsies ?????
Did they not take any from the upper scope esophagus etc... ?
DS had 20 slides on his last upper lower scope.
When he only had an upper egd three years ago it was 8 slides .

Only six?????


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## Farmwife (Dec 27, 2012)

Mlp the nurse said he took biopsy from both upper and lower. 6 is what she said.


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## crohnsinct (Dec 27, 2012)

So we wait for biopsy results.  I am curious to know if GI is going to make an appointment to go over biopsy results and if it isn't IBD what ideas he can come up with.  Since you didn't get much time today, make sure you get that time down the road.  

Hope Gracie feels better tonight.


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## Farmwife (Dec 27, 2012)

My hubby and I are going to ask to get that second at Cincinnati (if the scope come back clear) like he wanted awhile ago. No matter what, whether it's IBD or not it's still something that has to be figured out. 

I'm off for the night. Been a long day and I never know how the night will go with Grace.

Thanks all! Your all the best, even crohnsinct!


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## Tesscorm (Dec 27, 2012)

FW - re the number of biopsies... I'm thinking it might be possible you misunderstood the nurse (or she misunderstood something along the way) and Grace actually had 6 biopsies from each scope (upper and lower)???  Stephen had 14 biopsies during his scopes at diagnosis - 7 from upper, 7 lower.


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## Johnnysmom (Dec 27, 2012)

Is it possible to have a clean scope but have inflammation in an area of the small intestine that isn't shown on scopes?  I would assume pill cam or MRI would need to be done to check those areas?  

I think our biopsy took about a week to get back.  I would ask for a copy of the report with biopsies once it's in.  

I hope you get a chance to follow up soon and get those questions answered.  Johnny had issues coming out of sedation too and we didn't get a chance to talk much after the scope either.  Of course I always think of a million questions as soon as I leave!  

How is Grace feeling?


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## Stressed Mom (Dec 27, 2012)

I'm sorry you didn't get any answers today to help understand what's going on but like everyone else has said I'm sure the biopsies are the key. 

Hang in there Farmwife, get some rest the answers will come. I hope Grace is feeling better and you both get a good nights sleep :ghug:


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## kimmidwife (Dec 27, 2012)

Glad to finally read your update. I have been trying to get my little ones to bed for the past three hours and they keep coming out. I finally gave up and sat down to look at the forum. I am sorry you did not get more firm results. Like the others said hopefully the biopsies will give some more answers. Did they give an idea how long they will take? Hope Grace and you both have a restful night.


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## jmckinley (Dec 28, 2012)

Checking in on you. Sorry the scope didn't show some visible answers. I hope the test results come back with answers! Rest up and give Grace some big hugs from us! So glad you finally had the scopes.


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## Twiggy930 (Dec 28, 2012)

Ugh!  Wishing you had more solid answers.  Hopefully you don't have to wait too long for the biopsy results.

:hang:


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## Catherine (Dec 28, 2012)

Thinking of you.  Hoping Grace has a peaceful night.


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## Sascot (Dec 28, 2012)

Hope you had a reasonable night with Grace.  Glad it's all over - the preparation is horrible.  Sorry you aren't any closer to finding out answers, although it is good they couldn't see active inflammation.  When we went for scopes, they said they can only go down so far and up so far so there would be an area in the middle that they maybe couldn't get to that is causing the bleeding?


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## Dexky (Dec 28, 2012)

I can't imagine how horrible it is to know there is something profoundly wrong with your child's health and be unable to pinpoint the problem.  I know you have no choice but to keep searching!  Hugs to you all!!


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## Farmwife (Dec 28, 2012)

Grace had a good night. Her leg was a bother but she went back to sleep.
 She's happy this morning and playing. 

So after a long sleepless night I decided perhaps it's best to move on and try to more actively search out other possibilities for her condition.

I hate the idea of MS but maybe. Mobilities issues, maybe? Some strange food allergies, maybe? Some weird syndrome, maybe. Who knows but answers have to be gotten.

Biopsies will be back in 7-10. I guess I'm not thinking they'll show anything. 

Tesscorm I asked my hubby and he thought also it was 6. That's it! The GI never felt it was IBD so he might not have felt the need to take that many.



:heart:I hope y'all don't mind but I'll still be around and check in with y'all. What would crohnsinct do with out me. Poor thing would be lost!:heart:

I've said it before and I'll say it again. 
This is a very special forum.
 You all have been there for me and many others in our time of trials, hardships, frustrations and even the blessings. 
Your kindness is the true strength of this forum. 
David you should be very proud this forum. Your hard work and endless devotion to others is the greatest value this place has.

:heart:Our love and thanks from Farmwife and farmgirl!:heart:


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## Suzysu (Dec 28, 2012)

Glad you all survived the trip to the big city and sorry there are still no clear cut answers. I believe I am right in saying that they cannot visualise the whole of the intestine with the scopes, so I guess it is possible that they just can't see the bit that is causing the problem - after Freddy's scopes they gave us a report that told us which bits they could see and which bits they couldn't - can you check with the GI? 
Your food allergy adventures seem just like Freddy's take a food away he improves for a few weeks then gets worse again even though nothing has changed!
As eeryone else says just because it looks normal doesn't mean it is - just got to wait and see what the biopsies say - when is your follow up appointment? xxxx


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## Suzysu (Dec 28, 2012)

PS off to London to visit the other side of the family! - so off grid again for a few days xxxx


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## QueenGothel (Dec 28, 2012)

Glad you at least got the pictures taken and you know more about what is not happening in the gut. I hope you find what answers you need quickly. We love you too Farmwife, you have been a great support to us as well!  Hugs from downstate, who knows in the end I might become a Ohio State fan!  :ywow:


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## Suzysu (Dec 28, 2012)

PPS - I only seem to get to see a lot of the recent posts after I have posted so appologies if I have just repeated what everyone else has been saying!! xx


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## dannysmom (Dec 28, 2012)

Thanks for the update. We all look forward ot the biopsy results. If they are negative, I'd want an MRE and/or pillcam just to finish out the major testing. Couldn't the black blood be coming from the small intestines (if the stomach appear normal)? Danny's last scopes they took ~21 biopsies ... several from every area (esophagus, stomach, duodenum, TI, cecum, tranverse colon, other colon (?), rectum). OF course they did not give us any answers either tho.  Good luck!!


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## imaboveitall (Dec 28, 2012)

Fwife, as you know from V's thread...sm bowel can be a mess and scopes NORMAL, both grossly and histologically as V's always are.
She needs MRE or a pillcam. What if her sm bowel is wherein the problem lies as for V?


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## Johnnysmom (Dec 28, 2012)

I was just reading over Johnny's biopsies report and there where ten areas listed but 3-5 samples from each area.  Maybe that is what they did.  I would think if they are going to go through the trouble of scoping they would cover their bases.


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## QueenGothel (Dec 28, 2012)

Has her blacken stools been tested for blood?  I am just remembering back to Rowans coffee ground like stools and everyone kept saying blood but it turned out to be extreme constipation and her poop and not blood.  Just courious if it was tested for blood.  I don't want to make assumptions since I know all to well how weird it can be dealing with the blacked stools and cronic constipation.


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## Farmwife (Dec 28, 2012)

I don't know how to type this.

The GI got the biopsies already. Inflammation in the TI and colon. We're starting EEN with a tube on Monday or Tuesday.


I feel like screaming. I feel like dancing. I feel like over eating. I feel like shaking my fit a the world and yell ...I told you so.

The GI is going to call it Colitis for now. He said he still wants to take his time and make sure the dx is right. He gave the name of two other diseases that it could be but he focused on IBD the most. No matter what, right now her dx is Colitis.



So, if you don't mind your STUCK with us for now. 

BTW, the GI said sorry. He just didn't think a she would have this. I think that speaks a lot for him.


I'm starting a new thread called Farm Girl and Colitis. I t help me remember why all the info I need is.


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## Jmrogers4 (Dec 28, 2012)

Oh Farmwife!  I hate to say welcome to the club but at least you have some kind of answer and can move towards making Grace feel better.  Hope the EEN works wonders and she is soon pain free.


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## EthanClark (Dec 28, 2012)

Farm Wife,
I am glad you have some answers but also sad at the same time. If you ever need to chat about the EN just let me know as we started our son Clark on it DEC 23rd. It's been a rough week but we are crossing our fingers that this will be what he needs to heal. Give little Grace a love from our family.:ghug:


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## QueenGothel (Dec 28, 2012)

Welcome to the club no one wants to be a part of.  I also have mixed emotions for you, it is nice to have an answer but sucks it is a life long commitment at such a young age.  I was there just over a years ago and I remember thinking omg how will I deal with this.  I have learn its best to cross each bridge as I got to it.  I think you already have a leg up compared to me at that time, your more well versed than I was at the initial diagnosis and you have an idea of all the different treatments out there. 

I hope EN will help her... do they think you could achieve remission even though it is a colitis diagnosis.  Obviously it is healthy for her, but will it reduce her symptoms?  All questions I am sure you have asked. 

Sorry :heart:

Take care and if you ever need me feel free to pm me anytime.  Hugs


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## my little penguin (Dec 28, 2012)

^^^^ yeah that
I forgot EEN fixed a lot of things for DS but not the lower colon rectum area .
Hugs


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