Friday Update on Little Farm Girl

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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:
 
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!
 
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.
 
Farmwife said:
Thanks Dusty! That's just cute is a sad kind of was!:D

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:
Click to expand...

I bleach everything. Even this very iPad I am typing on.
 
Myreinhard said:
I bleach everything. Even this very iPad I am typing on.
Click to expand...

:ywow:

You just reminded my to clean my laptop.:D


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:
 
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 :D
 
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.
 
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!
 
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
 
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.
 
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:
 
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
 
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 :(
 
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.
 
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.
 
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.
 
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.
 
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
 
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:
 
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.
 
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.
Click to expand...

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!
 
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.
 
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
 
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.
 
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!
 
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.
 
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.
 
Yeah that ^^^
Everyone is different ours only started the morning before the scope.
It is very doc/child specific.
 
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.
 
@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
 
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.
 
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!
 
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...
 
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.
 
Last edited:
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.
 
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
 
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!
 
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.
 
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!
 
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!
 
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.
 
: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:
 
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!
 
: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!!!
 
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
 
Crohn's Mom she's having both.:rosette2:

I don't know how good of a clean out it was.
She vomited a lot.:cool: 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:
 
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
 
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???
 
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.
 
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
 
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.
 
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.
 
Did u reach anyone? We're all thinking of you all. Hoping Grace feels better and gets what she needs.

J.
 
: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:
 
^^^ Ditto all the abov e ^^^ Hope all goes well and you leave with some answers!!! :ghug:
 
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.
 
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:
 
^^^^: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
 
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:
 
^^^^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!
 
Yep it's nearly dinner time. We know you have your sister's smartphone anyway, FW. Time for an update on that scope!!
 
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!:(
 
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!
 
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
 
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.
 
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:
 
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?????
 
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.
 
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!
 
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.
 
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?
 
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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