# Little Farm Girl and Colitis



## Farmwife

Another new journey starts for us....again.:wink:

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 guess the moral to this story for all parents is.............
Don't give up! Fight for the answers your looking for!


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## my little penguin

Ok so now you have a dx .... Breathe
But even with EEN to get down the inflammation 
What maintence med are they putting her on? To keep the inflammation at bay since these meds take time to work ???
Are they doing an mre and or pillcam to throughly document the extent if her disease?
Keep pushing
You are getting there


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## polly13

I am so relieved you have got a working diagnosis that is good news.  Onwards and upwards from here - now you know what you are dealing with
Polly


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## Farmwife

No, mlp he's not.:ack: I ask about the MRE but he said, right now it's not needed. 
Maintenance meds????? No mention after talking about EN. :ack:
Originally he wanted the steroid approach. I forget but I thought he said 10 burst with a couple months of a lesser amount then a step down. 

I'm the one that said EN. I think he about fell over. He said are you willing to do that? I said...ya! I asked about a tube this time and again...I think he fell over. He said are you willing to do the tube for her....I said, ya! He said the reason I didn't bring that up first is most parents are worked up about the dx. The tube is hard for them to hear about at first.
He said it sounds like I'm a pro!:biggrin: I said I've been fighting for my daughter for years. I already knew what this was. That's when he said SORRY!

 I like him know!:medal1:


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## upsetmom

Sorry to hear the news....:hug:

At least you finally have an answer and can start treating her..

How is Grace ?


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## upsetmom

Sorry i just read your other post ....glad Grace is good and happy.


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## imaboveitall

Ack, another tiny one with this fu**ing disease now confirmed.
Another delayed dx due to docs misperception of how IBD can present.
Another doc NOT OFFERING EEN and the MOTHER has to ask for it...WTeffingF

Make sure, Fwife, Princess G gets a broken down formula. Peptide or amino acid based.
If her sm bowel is involved she'll absorb the formula far better.
If you plan to keep her on feeds long term as V is ask about a PEG tube as she is too small to remove/insert an NG tube nightly like V does.
One of the biggest mistakes mothers seem to make is stopping the EN as soon as the kid is stable. If it works, WHY stop it?


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## Tesscorm

Wow, quick turnaround with the biopsies!!  I'm glad you finally have a diagnosis and can move ahead!

As far as an MRE, Stephen was diagnosed in May by scope and only had his first MRE in Nov - not sure its the best protocol but I guess it's not unusual to wait for further testing like an MRE.

Someone correct me if I'm wrong but 'colitis' means inflammation of the colon - can't inflammation be caused by something other than IBD??  What I'm suggesting is that perhaps maintenance meds weren't mentioned because the GI believes it's an inflammation that can be treated (such as diverticulitis is inflammation but can be treated).   But, FW, I'm just thinking out loud here...

:ghug:  :ghug:  :ghug:


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## upsetmom

Tess after my daughter had her colonoscopy the DR told me she had colititis but he wouldn't know what caused it till biopsies came...so if it were something else i would think they'd know....i could be wrong


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## Farmwife

Your right Tesscorm. He called it "non-specific" inflammation. He stated that a few other things can cause this BUT he focused (for the fist time) on her EIM'S. He said he has another 4 yr. old boy like Grace and feels that their "coming possible into IBD". But he said he want to make sure of her dx and not just start her on meds that won't help. I respect that!

 So yes I'm trying feverishly to find my bubble and make believe this Colitis can be healed!:dance:


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## dannysmom

Thanks for the update ... Danny had the non-specific inflammation on biopsies in several parts on both of his scopes ... but the 3 GIs we saw would not definitively call it Crohn's either. I sure hope the EN helps.


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## Farmwife

Well at least dannysmom, we're in good company.:ysmile:

I'm just happy for two things. A dx and no visible sigh of damage yet. Well....in the part he saw. 
I know what MIGHT come down the road but now I feel like I'm the best mommy in the WORLD!:biggrin: 
Tomorrow that will change for sure.:ytongue:


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## Tink572

That has to be some sort of record for quickest results ever!

Sorry about the diagnosis, but so glad you have some answers and can start treating your sweet little girl.

Good job to you for knowing something wasn't right, sticking with it, and pushing to get some answers.  Hope EN works for her and can get her feeling better.


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## my little penguin

Highly recommend you get a second opinion at cchmc.
No one told us to get a second opinion at first.
But here is why you need it .
If you schedule now they will not need to rescope.
Your Gi sounds very conservative which can be good but ...
He doesn't seem to want to still believe its Ibd so
For your sake and hers a second Gi stating this is Ibd would go a long way in getting her the proper care.
Also if its not truly Ibd then this will help.
Some gi's like to stay stagnant since they really don't want another child to have this horrible disease so will do everything to slowly rule out other causes .
A 2nd opinion speeds up this process since its independent .
They may have the ability there to do an mre without sedation making it a useful test with less risk.
A pillcam can't be done since she would not be able to swallow the pillcam . Placement would require more anethesisa so that could be the hestitation.
Ct requires radiation. 
Second the elemental formula - elecare or neocate since it is the most broken down 
Good luck


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## Farmwife

I know Tink572!

I had just resolved myself to the fact that amybe we'll never find out. I was totally depressed.
Then I get the call with him on the other end telling me all this and all I was thinking is........hey:ymad: you told me 7-10 days!:rof:


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## Sascot

That was really quick on the biopsies.  It's great that he's finally given you a diagnosis even if not definitive.  You are a fab mom - after all this fighting on Grace's behalf, it's finally been justified.  Glad he apologised!!  Good luck with the EN - I truly hope it helps tons!


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## Farmwife

A question for y'all.

How long after scopes did it take for the kids to have normal BM's?

Grace is having diarrhea. Changed her undies three times today. Poor kid.


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## Dexky

What did she eat afterwards?  EJ has always been fairly cleaned-out by the preps so there's been no problems afterward.  His poop was normal almost immediately after commencing Asacol which was prescribed the day of his first scopes.  It was the first solid poop he'd had in 3 months.

Sorry and happy for you at the same time FW!  At least you have a name for the devil now!!


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## Devynnsmom

I'm glad you finally got some answers! Always trust your gut 
Devynn was pretty much cleaned out just from the prep of a scope, but she would think she had gas and let a bit go after a scope. I think it was better by the next day.


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## crohnsinct

I am afraid to ask but did they stain the whatevers to test for ME?


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## my little penguin

DS was not normal afterwards but that was due to the rectal inflammation on him.
Since he didn't get normal until recently not a good example
.


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## my little penguin

CIC that staining process takes a long time so ......


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## Momto2girls

You are SO luckyyyy they are diagnosing her and taking this seriously. Gracie had inflammation (with no damage) in the same exact spots and they called it "non-specific" with NO diagnosis. And while they did give us meds they stopped them short after a few months. It is CRAZY frustrating, so yay for you for not having an a$$hole doctor like ours.

It is amazing how varied the care can be...I am super glad for you even though I am sorry!! :heart:


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## Farmwife

crohnsinct.........

That's the first thing you ask?:ywow:  Not even welcome to the club. Not even a happy your staying. Well I see how it is. You only miss me when you think I'm going to leave you. Typical women!:ytongue:

Ironically I was just thinking that. No he (GI) doesn't stain for ME. We would have to have that sent else where. I think Boston stains for that. However now that she has inflammation, I don't know if that goes beyond the microscopic level? Interesting thought. I'll have to ask the new GP.


Grace is having some bad knee pain and it's in her neck on the right side of her spine. I thought it was because of her cold but know that's gone but the neck pain has stayed. 

Could the scope have "stirred" something up? The runs is new for her and now the joint pain flared back up. We'll see how tomorrow goes. At least we have a direction. Makes all the different.:wink:


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## Catherine

Welcome to club.  Happy that you have a way forward.


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## Farmwife

Momto2girls said:


> You are SO luckyyyy they are diagnosing her and taking this seriously. Gracie had inflammation (with no damage) in the same exact spots and they called it "non-specific" with NO diagnosis. And while they did give us meds they stopped them short after a few months. It is CRAZY frustrating, so yay for you for not having an a$$hole doctor like ours.
> 
> It is amazing how varied the care can be...I am super glad for you even though I am sorry!! :heart:



Momto2girls,
Don't give up! I did and know I feel guilty. Don't give up!!!


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## my little penguin

FW you did the best you could considering - how many docs were not thinking she had anything remotely close to Ibd .
:hug:

Mom2girls-
Just keep pushing most of us here had too.
Take a break when needed regroup and push on if it doesn't seem right.

Biopsies will be unspecified inflammation unless they find a certain type of granuloma or ulceration etc pathologists don't like to label Ibd unless certain things are found .
Dusty's kid did not. Have biopsy results consistent with crohn's but clearly has crohn's.
It's just they need to find xyz then they put the label on.


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## QueenGothel

I welcomed you on your other thread.  :ghug:

Awww... our kids are scope sisters. They both got scoped on the same day and both got our biopsy results the next day. Yay Michigan!!!  At least they got something accomplished this time around at my hospital.  Grrrr... big jerks. 

Oh and they had EMU basketball players visiting yesterday and Rowan got to meet some very tall men she was amazed with their height being over 7 feet tall.  Silly kid. 

Nothing to add I know you'll figure it out.  Smart Cookie!:highfive:


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## izzi'smom

glad tha t you finally have an answer, however obscure.  are you doing an indwelling ng tube? also, there is gross (visual) and microscopic inflammation... I would get copies of both the scope report and the pathology report from the biopsies. sending my . love...<3


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## Farmwife

Myreinhard said:


> Oh and they had EMU basketball players visiting yesterday and Rowan got to meet some very tall men she was amazed with their height being over 7 feet tall.  Silly kid.



Mary how funny!
That reminds me of my son when he was 4. We had a singing quartet come to our church. One of the men was 7+ feet. My son started to wave his arm in a circle over his head. I wispered...:shifty:son what are you doing? He said....:voodoo:.momma his a giant and I'm gonna stone him like David did.:rof:


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## Dexky

Myreinhard said:


> Oh and they had EMU basketball players visiting yesterday and Rowan got to meet some very tall men she was amazed with their height being over 7 feet tall.  Silly kid.


What's silly about that??  I'm 48 and it's still pretty doggone rare to see 7+footers outside of an NBA arena


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## David

They're calling it colitis even though there is ileal involvement as well?  Weird.

Can you please post a copy of the biopsy results?  If you don't have it, get it.  These are the kind of things you absolutely want a copy of.  Sometimes a pathologist isn't as familiar with signs that hint towards or away from IBD as they should be and we have a couple people here that can review results for such indicators.

What were the "two other diseases" he mentioned?


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## David

Like someone else mentioned, are they scheduling her for a pill cam or MRE?  That they found inflammation AND she has dark blood in her stool (which suggests the bleeding is much higher than a colonoscopy can reach) says they absolutely need to check higher up to see what's going on.


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## Johnnysmom

Sorry FW ......:ghug:

I know this has been a very long road.  But I am glad you have some answers now and that the Dr.'s are looking into more answers for Grace.  

Dr. K didn't order an MRE for about 2 weeks after Johnny's scope.  We had many follow up conversations about treatment after our first conversation about the Prednisone.  I am sure they are busy brainstorming about what they have found and best way to treat Grace.  

I think the scope can "stir things up" it did for Johnny, at least as far as the tummy issues.  I am not sure about the joint/neck pain.


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## my little penguin

Fwiw DS had his ct scan ordered during the same phone call about the biopsy results for Ibd dx.
In fact the Gi had us call right then to schedule and when the hospital wouldn't get us in for three weeks Gi took over and called back within an hour with a new date a few days from then .
So dx call to imaging was a few short period of time


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## Johnnysmom

Sorry, I don't actually know when the MRE was ordered but Johnny got one about 2 weeks after diagnosis.


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## Farmwife

David I don't have a copy yet but I will ask for one. Our appointment with Grace's new GP is the 11th. She on vacation. I know the GP's nurse told me yesterday she will seeking all information about her scopes and biopsies.

OK, now I've had time to think. keep in mind I was in shock when he called.

Also keep in mind he's from India with a heavy accent and a bad cold on top of it.

I know he said that infections can cause Colitis BUT...he also stated that Grace has suffered for way to long to have that be the main source. Also he knows she's been on Flagly with no affect. So he discredit it soon after he said it.

I started asking about the bleeding. The scope never showed scarring in the stomach. I said the blood was dark as was the stool that means small bowel. I asked about a MRE but he said he doesn't feel that's need yet.

The GI asked if we're coming in soon but I said the next apt. is in February.:ywow: So I assume he'll want to move that up? Who know maybe that's fine for him.

He stated the TI inflammation was moderate. I THINK he said he found inflammation also in the transverse colon. He never said anything about the rectum, even though theirs scarring already.

So here's what we know. their's inflammation at the microscopic level. The TI has the most. Rectum has scarring already. The GI is now concerned about her EIM's.

So here's my question for David or anyone.

WHY does Zantak seem to be working for a girl that has a no sings of inflammation or scarring in her stomach? Matter of fact I asked if we can up it again as her tummy pains seem to be increasing.


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## my little penguin

Feb is way too far out.
Ask for a sooner appt mon/ wed
Zantac can be treating underlying reflux or Ibd of the stomach.
She may need a ppi - something to discuss with your Gi. 
DS has been at this for over a year and it wasn't until he was under control that we were able to move out scheduled appt passed 4-6 weeks.

Even then I was on the phone weekly or more with the Gi .
Still were seen in the office for emergency visits a lot in between.
DS is finally at 2-3 month check ups.


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## my little penguin

Meant to be clear the Zantac would treat the Ibd/ gastris ( mild )so no scarring since age has been on and off it for years.
Stomach pain could be due to inflammation In the small bowel not seen by the scope .
Hence the need for mre / pill cam
To determine how bad her disease is then plan the meds accordingly.

As an aside DS 's Gi told us it is common for children to have an EIM with Ibd however only kids with more severe disease do they tend to see more than one EIM in his experience.
So joint pain only ok but more than that indicates more investigation is needed to determine the extent of the disease.
Fix the gut inflammation and the EIM will go away as well.
Hugs
It's a lot to process at once .
We will give you a few days at least before you have to put on your "big girl panties"
Sulk at least until wed
With a warm bath cabana boy and some chocolate 
Virtual pizza if necessary


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## Tesscorm

Just one note before I leave ...  If you start using the NG tube, Stephen does have heartburn if he doesn't take Nexium on the nights he uses the tube.  This may be redundant as she's already on these meds but, keep in mind the tube keeps the 'flap' open that is usually closed between the stomach and esophagus and this allows a little bit of stomach fluid to seep up (this is probably a painfully 'layman's' description :redface: but it's how it was described to me ).  And, I would imagine this is even more of an issue when you have the formula laying down (as Stephen does).

Good luck!!!


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## QueenGothel

Sorry to say it... but if it was mostly the TI and not as bad as the remainder of the colon it isn't UC.  UC always always involves the rectum the only time it is spared is if enemas such as 5 Asa or steroids clears the area up.  It starts in the rectum and continues effecting more and more continuously without being patchy or starting and stopping.  Yes UC can have the TI involvement (pretty rare) but these are usually cases of severe disease like pancolitis.  Rowan had very severe disease but never had TI involvement. 

Hope they get you more dx soon.


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## my little penguin

^^^^ yeah that cd is patchy
Send her reports records for a second review even if they don't see her .


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## Farmwife

Yes I agree. The Colitis have to be challenged IF that's what the GI sticks with.
 The GI was clear though, he said he want to take his time and make SURE of the finial dx.

The problem I would have is....what is HIS time line. I mean the pains are in her neck now. Her rash is coming back and now the right side flank pain is picking up. His time better be some what fast timing. But again he was VERY concerned about her EIM's now. That's good.

Johnnysmom:ghug:
Dr. K brought up the meds first but I'm the one that said EEN. He explained that most parents have a hard time hearing the dx of colitis, so he tends to bring up the medicine route first because hearing liquid nutrition with a tube tends to freak most parents out even more. Did Johnny do EEN?

Tesscorm
I'm starting to get worried because last time she did the EEN, as you all remember, we ended up at the hospital because she bleed out. I think I'm going to ask for a better med than Zantak.

MLP:yrolleyes:
What is PPI? Would a PPI be better than Zantac?
:smile:Mlp don't worrie about me needing time to soke this in. Been there, done that, time to get things moving!:ymad:


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## Farmwife

What do you mean by "patchy" mlp?

I guess I don't understand the full picture of Crohn's vs. UC.


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## my little penguin

Uc is continuous meaning if she has inflammation in her rectum ( ie scar tissue) then there would be continuos inflammation to her TI .
As was stated TI involvement in uc is rare.
Ppi - is stronger Prevacid is an example or nexium.
It is a proton pump inhibitor ( ppi)- stops acid production - nothing to wash up
Zantac is an acid reducer it changes the ph of the stomach so what washes up should not do as much damage 

Go on to ccfa to find out the list of differences for uc vs crohn's at the basic level.
The only reason I can think if uc dx would be it is more common In those her age 
And from what you said so far they did not take a lot of biopsies to determine if it was continuous in her colon.
Please send her records biopsies out .
It will take every bit of two months to get a review and at that point you may need it  to push for real meds .

EEN wil induce remission in some but once she starts to eat it will all come back 
Given her EIM and age she probably has severe disease 
So you will be back to square one in 6 weeks .
Only needing pred this time to give med x time to work .
Not saying she does but she really needs someone who will believe what it is and not drag their feet.
Sometimes the extra eyes "help" give the local Gi the push they need to get things going


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## Farmwife

Ya, I need to call him and have a further talk. Now that I have my thoughts somewhat together I can start asking. So muppet , I'm going to steal your idea and just line list.
Y'all can add if I forget one.

1-Where was the inflammation again?
2-If it's patchy and in the TI why do you feel it's Colitis and not Crohns?
3-She needs a PPI.
4-Move up next visit.
5- Labs need to be done.


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## QueenGothel

When he said colitis he might have meant Crohns Colitis.

Not trying to scare you but make sure she is on Florastor if taking a PPI the risk for c.diff re-infestation is higher in IBD and even higher with IBD/PPI involvement.  I did a lot of research on this'd just recently. I put it in that c.diff thread I started and never finished.  We used it for Rowan bc of the steroids messing up her belly.  The good thing about them is they actually help heal things. But every good has a bad.


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## David

Farmwife said:


> 1-Where was the inflammation again?
> 2-If it's patchy and in the TI why do you feel it's Colitis and not Crohns?
> 3-She needs a PPI.
> 4-Move up next visit.
> 5- Labs need to be done.


1.  "And was it acute or chronic?  And can I have a copy of the biopsy report?  My email address to send it to is..."

2.  "Colitis" simply means inflammation of the colon.  It can be acute or chronic and there are TONS of different causes.  If there is inflammation of the ileum, it is, "Ileitis".  That simply means inflammation of the ileum.  It too can be chronic or acute and there are TONS of potential causes.  IF Crohn's disease is the cause of the inflammation in the ileum and it's not present anywhere else, then it would be, "Crohn's Ileitis".  If the Crohn's was in the ileum and colon, then it would be "Crohn's Ileocolitis".   If it was just in the colon, it would be, "Crohn's Colitis".

Many causes of ileitis and colitis are self-limiting (go away on their own) and aren't that big of a deal.  Heck, even the colonoscopy prep can cause "itis".  Others are easily or somewhat easy to treat or manage once the cause is found.  The intestinal itis's you REALLY don't want are Crohn's or Ulcerative.

3.  Don't tell your doctor she needs a PPI.  If you really want to bring up the PPI thing, something along the lines of, "Grace is on Zantac, do you think a PPI would suit her better?" would go over better.  PPIs can lead to a whole host of problems on their own though, especially with prolonged use so you don't want her on it unless she really needs it.

4.  Good.

5.  What labs are you going to request?


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## QueenGothel

Wow David we are thinking in rhythm? :mario2:

I actually feel like a smart cookie not as smart as you of course but another 10 years and just maybe I will be and administrator?


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## David

Myreinhard said:


> just maybe I will be an administrator?


You can have the job now if you like   I find myself dealing with the administrative side of the community MUCH MORE as we get bigger and prefer the research side and talking with all of you.


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## Farmwife

David said:


> Many causes of ileitis and colitis are self-limiting (go away on their own) and aren't that big of a deal.  Heck, even the colonoscopy prep can cause "itis".  Others are easily or somewhat easy to treat or manage once the cause is found.  The intestinal itis's you REALLY don't want are Crohn's or Ulcerative.


:eek2:
This statement David makes me think! She's had this for YEARS and it has yet to go away and is only getting worse.:confused2:

As far as labs, all of them! The new GP was less than happy with her Vit. D levels and I would think she would do all vit. levels. I think her B-12 (It was B something) was low but I need to check again.
I think her LDH differently needs to be monitored more.


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## David

Farmwife said:


> As far as labs, all of them! The new GP was less than happy with her Vit. D levels and I would think she would do all vit. levels. I think her B-12 (It was B something) was low but I need to check again.
> I think her LDH differently needs to be monitored more.


If I was a doctor and you called me on the phone and said, "We need her labs done" and I responded with, "Which ones?" and you said, "All of them" I would start to rub my temples and sigh.  You don't want to be that person.  Yes, you absolutely want to advocate for your daughter, but you need to be able to do so in an educated manner where you're working WITH your doctor rather than them ending up avoiding your phone calls.  You want to request things and have your doctor say, "That's a good idea" or, "Why" and you be able to present hard data showcasing why it's a good idea.


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## Clash

I agree with David and each time I have asked for certain labs, I provided my reasoning(which I usually obtained from the forum, thanks guys!) and I have gotten each lab I requested. When I requested, vitamin D and B, the GI said I think that is a good idea and I'm going to add zinc and a couple of others.

I think I still get the temple rub with all my questions but at least he knows I'm fully engaged...ha!

Good luck with the appt.


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## Farmwife

Thanks David that's good advice. More research has to be done.:smile:


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## my little penguin

Yep same here ....
Only asked for b12 - as in did he know if DS levels were normal which prompted 
" I don't know but that would be a good idea to check "
All about the presentation and limit to those things you really want./need


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## QueenGothel

You'd also be surprised with how much getting some of these vitamin deficiencies fixed can have a effect on the EIMs and the disease in general?  b complex is so huge for everyone and Vit D we supplement hugely.


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## David

Myreinhard said:


> You'd also be surprised with how much getting some of these vitamin deficiencies fixed can have a effect on the EIMs and the disease in general?  b complex is so huge for everyone and Vit D we supplement hugely.


Magnesium is the new flavor of the month.


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## my little penguin

One thing to take into acct when she is formula - her vitamin levels should go up since these are very easily absorbed from amino acid or peptide based formulas.


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## Farmwife

How often does labs get run on EEN?

Right now Grace has labs an average of every two months.

That's a good point MLP about vitimans in the EEN. I wouldn't want to to have to much of one vitamins or not enough of another.


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## DustyKat

WOW! I have missed so much. :yfaint: 

First up, it is so good to hear that you are finally starting to get answers for your little girl Farmwife. :hug: 

Now I have read over the thread but I take no responsibility for repeating what has already been said or for being a total dork and being way off the mark. I simply can't retain all that has been said. :lol: So I will just pull out what stood out for me. 

Moderate inflammation in the ileum: This is something I would pursue as a priority. It does not match the diagnosis of Colitis and so needs clarification. I personally believe that inflammation located here does warrant imaging simply because no one can confidently say there is no extension beyond what the scope can reach. 

Pain: Pain is not normal state for the body. Having said that it can be both a blessing and burden when it comes to a diagnosis. For Matt it was a blessing. His pain was very specific in both location and presentation and was one of the main factors that led to his very quick diagnosis on the back of extremely mild symptoms. For Sarah though it was a burden and in her case one of the main barriers that led to her not receiving a diagnosis earlier. 
I don't know if you have ever read Sarah's story Farmwife but her pain was a red herring for so long. Sarah's disease was located in her terminal ileum but for nigh on all of the 18 months she was undiagnosed it presented as stomach pain and as a result IBD wasn't on the radar. I must state here though that Sarah did not have bleeding and although she tended to constipation it was not to the degree that Grace suffers with. No doubt these lack of symptoms also added to the burden of non diagnosis. 

You have received fab advice about EEN and supplementation so I have nothing to add there. The one thing I will chime in with though is the need to obtain copies of all test results. They will be invaluable to you as you navigate the system and it also allows to you keep on top of things without the need to rely on the information of others, as in medical professionals. 

Good luck! 

Dusty. xxx


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## Farmwife

Thanks DustyKat

Can someone help me understand microscopic inflammation vs. visual inflammation with a scope. 
I'm not asking about the part we can't see. This has to do with the part that was seen with the scopes.


The reason I ask is, and I'm NOT trying to make lite of Grace's situation, but looking at her pictures of the upper and lower track they look normal. The GI was sooooo sure nothing was wrong when we left the hospital. Now we know different. 
BUT........in my mind since it's still microscopic inflammation, that's better then visual inflammation. Less damage right?


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## my little penguin

Not necessarily....
Visually you can look very bad but only have acute changes in the cells meaning the damage being done on the cellular level was only recent and not ongoing.
You can conversely have a good looking scope meaning she wasn't actively flaring everywhere but have "marked" chronic inflammation -
Meaning just like when someone is 9 months pregnant you are going to know "marked"
Or you can look horrid visually and also be horrid microscopically .

To really figure out what is going on and severity etc you need to talk to your Gi and get copies of the pathology report.

Guessing will get you no where .
We assumed DS was mild since we also left the hospital with all is normal kid.

However before we got into see our Gi we took DS to his 2nd opinion gi( it had been scheduled long before the scope)

This Gi explained even though visually DS looked good 
His system was really a mess and had been for sometime given the changes they saw on the biopsies . Since those changes take a long time to occur .


----------



## my little penguin

http://www.hopkins-gi.org/GDL_Disea...DL_DC_ID=D03119D7-57A3-4890-A717-CF1E7426C8BA
This should help


----------



## Farmwife

Thanks mlp.:ghug:
I love the way you put it. If you don't mind I'm going to read that to my hubby.


----------



## my little penguin

I found  with my DH
the comic book "pete has crohn's " was the best to explain things.

this one was also good.

https://improvecarenow.org/patients/self-management-handbook

cant find the really good one
I have a paper copy but  :ack:


----------



## Johnnysmom

Farmwife,

We did not do EEN and it was not presented to us.   But we flew to Florida the day after the scope and we were suppose to discuss treatment options the next week.  Johnny started bleeding the next day and I called and spoke to Dr. K.  He wanted him started on Prednisone that day, so because things got moved up we never had a chance to have that conversation.   

Also Johnny had involvement in his esophagus, stomach, small bowel and large so I think the Prednisone was a more effective choice for his disease.   

Would Grace's EIM's be better treated with Prednisone as oppose to EEN?


----------



## Farmwife

Well.........Johnnysmom
I know he brought that up first. However, when I brought up EEN, he was all for it.
I'm calling on Monday. I want to set up a conference call with him and make sure my hubby is around.


----------



## my little penguin

Regardless of drugs ( pred or EEN)
Once the inflammation is reduced then the EIM will go away.
EEN works in 80% of kids and is as effective as pred. The first time.
It is the second time that the numbers favor pred more since EEN becomes less effective with time and disease .
There are more than a few papers in the pediatric research section at the top of the forum stating the studies and effectiveness of EEN


----------



## my little penguin

> These pediatric trials, along with a pediatric meta-analysis (38) consisting of 5 randomized controlled trials involving 147 children, which determined that EEN and corticosteroids were equally effective (pooled relative risk 0.95, 95% CI 0.67% – 1.34%), may suggest that the benefits of EEN differ in children from adults with a more favorable effect in children. Additionally, a meta-analysis of pooled data from 4 randomized controlled trials in 144 children found no significant difference in remission rates at 8 to 10 weeks between EEN and corticosteroids (relative risk 0.97, 95% CI 0.7% – 1.4%, random effects model) (39). Day et al (32) cited intolerance to the formula and inadequate volume as possible reasons why some patients did not achieve remission.


From:
http://www.naspghan.org/user-assets...nteral_Nutrition_for_the_Control_of.29[1].pdf




> nfluence of Disease Location
> Whether EEN provides a better outcome in colonic or small bowel disease is unclear, although some evidence tends to favor EEN in small bowel disease rather than in active colonic disease (55). Afzal et al (55) have shown that isolated colonic disease does not respond to EEN as well as ileocolonic or ileal disease (11/12 patients with ileal disease achieved remission, 32/39 with ileoco- lonic disease achieved remission, 7/ 14 with isolated colonic disease achieved remission, P 1⁄4 0.021). Other investigators have not shown support for this (10/13 patients with isolated small bowel disease achieved remission at 4 weeks compared with 15/19 patients with isolated colonic disease, P 1⁄4 0.88) (56). The meta-analysis by Zachos et al (36) was unable to make definitive conclusions on this aspect because of a lack of power. Until the importance of disease location on response to EEN is definitively delineated, it would seem reasonable to consider its use for all patients with CD





> Two Canadian groups have considered the first 2 approaches. A report from the Hospital for Sick Children, Toronto, described 28 children provided with elemental formula delivered overnight by an NG tube while consuming a normal diet in the daytime compared with 19 children in whom EEN successfully induced remission but who opted to discontinue nocturnal elemental feedings (14). At 12 months, 43% (12/28) of patients receiving nocturnal elemental feedings had relapsed compared with 79% (15/19) who had dis- continued supplemental elemental feedings (P < 0.02). Investi- gators from Quebec used an alternate approach in another cohort of 8 children with CD and growth failure (15). These children received periods of NG elemental formula (70% of energy require- ments) for 1 of 4 months during a 1-year period. Significant height and weight gains, decrease in the Crohn’s Disease Activity Index, and decrease in prednisone use were noted


----------



## QueenGothel

If Rowan had Crohns and not UC I would have totally did the NG tube feedings.  Very proud that your willing to do it.  I remember seeing izzi when she had hers and thinking that poor baby but if I knew then what I know now.  I now think it was awesome! :medal1:


----------



## kimmidwife

FW,
Wow I am away for a day and so much has happened. I can't believe they got you the results that fast! That is unbelieveable. Did he say if these are the preliminary readings or the final pathology report? I am glad you finally have some answers. I am so glad he is allowing you to try EN.


----------



## kimmidwife

Sorry I got cut off in the middle of my thoughts Sophia came out of bed for the tenth time tonight. Anyway I am so happy you finally have some answers. I think the others have given very good advice. Please post the pathology results when you get them so we can see what the findings were and maybe some of the experts on here can give some advice. I think MLPs advice about getting a second opinion still is a good one.
Anyway welcome to the club! Sorry you have to join it but glad you are getting some answers finally!


----------



## Johnnysmom

I would hope our options for treatment were not limited because our Dr. thought we would "freak out" or not want to bother.   These decisions are excruciatingly difficult and we all make the best choice we can for our children.  In the end it is very personal and very complicated. 

I know you will figure this all out and make the best decision for your Grace.:heart:


----------



## my little penguin

Johnnysmom said:


> I would hope our options for treatment were not limited because our Dr. thought we would "freak out" or not want to bother.


 
I know for a fact our GI did not mention EEN to us because of this - and He didn't think people would "stick" to it. That they would give in if it got too hard or their child put up a fuss.
WE had to ask about it.  ( found out about EEN from here:ybiggrin.
Our GI had never had anyone actually do it although he knew about it.
 The only reason he let us try it was he knew we were very strict with DS's foods due to severe food allergies and asked us to treat EEN the same way.

Judging by what I have seen on here and other places I feel this is a valid concern- most parents do not want to battle with their kids anymore than necessary when they are sick and most state- they wont drink it or its too hard.
not judging because if it was my oldest - I would have been in the same boat and would never have suggested it. Not a battle I would have wanted to fight.:ack:

DS has been restricted on foods since birth so he never has the same food as everyone else- he knows others will be eating x dessert and he can't have it.
he also knows that sometimes we have to eat or drink things we don't like when a doc says so..THis is his "norm" so going to school and not eating when all the other kids were was hard for him but not so far out of the norm KWIM.

I am not saying its right to not offer parents the choice but sometimes docs go with what they know will work.


----------



## QueenGothel

It is pretty dumb in fact.  It wasn't an option for us but I would take that everyday instead of having to do some of the crap I've done now.  I would defiantly say that using adult sized Suppositorys and enemas was the worse treatments I ever had to do.  Though recently I almost had to do an at home fecal transplant, thank god she came up negative for the c.diff. I would have totally did it and was on board but my god can I quit playing with the poop please. 

Sorry I digressutahere:


----------



## Clash

C was finally able to get three supplement shakes down today with minimal gagging and fuss and I was on the verge of climbing on the rooftop and announcing it! It has been a battle and wears us both down quickly. I don't think there will be a time when he doesn't gag or fight to keep it down, the texture creates this immediate reaction and he dreads it each time. MLP, I think our GI thought the same way although C was already on pred when we first saw him so it was a non-issue then I suppose.


----------



## kimmidwife

We also had to ask our doctor for it. He also told us he did not mention it because kids don't want to do it and parents don't want to fight them for it. I told our doctor that I thought all options should be given to parents not just the easy ones. I also told him that from what I have read and heard in many other countries this is the first line of treatment used. I really think it is backwards that doctors here do not want to consider what may be one of the safest treatments with the least side effects there is. If it wasn't for this fantastic forum I never would have even heard of EN and wouldn't have known to give it a try.


----------



## crohnsinct

FW: O.K. sorry but totally confused.  Doc called you with Colitis and said he wanted her on meds but agreed to EN with a tube but isn't seeing you until February?  When are you suposed to go in and learn how to insert said tube and work the equipment etc?  I just assumed you were going back there for that and that was starting on Monday.  lease don't tell me this doc is slipping back to his old ways.

And as for me not welcoming you...I did that way back when you joined and have been tryng to get rid of you ever since:ytongue: Literally, nothing would make me happier than for you to find out that all this was some very innocent easy to fix thing and to have you just lurk on Much Ado just for fun! 

I am learning so much reading this thread.  Seems like I have still been operating in my dx fog.  

David: why is long term use of PPI's troubling?  O has been on Prevacid for a year now.  I actually didn't know why she was on it.  I asked about 4 months in and he said because there was inflammation in her stomach but he never told me that at dx.  He also said there was rectal inflammation but at dx said all the Crohns was in here colon which has always made me wonder if she really has UC and before you all ask no I do not know if granuloma's were present on the biopsy...guess I will be asking in April huh? Along with hy wasn't there imaging of her small bowel?

Magnesium rocks!  Fixes skin issues too!


----------



## AZMOM

Glad things are moving for your baby. You're getting some great advice. So I'll just say "ditto". 

J.


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## kimmidwife

Crohnsintinct 
Long term use of PPIs can cause osteoporosis. I asked Caitlyn's doctor about it as she has been on it a long time and she was going to switch her to Zantac it is safer with less side effects overall.


----------



## crohnsinct

As for EN...same here..learned about it here!  When asked doc why he didn't bring it up...same thing..no one wants to do it or stick it out but he added that he is tired of watching children go another two to three weeks un treated while the parents and kids "try" EN only to abandon it.  So he goes drugs first.  Not saying he is right but I guess I understand why they present the drugs first.  In our case O was already on Remicade so I am sure that is why he was so willing but if she hadn't been on anything I doubt he would have been so agreeable.  

He also said she was one of only three patients to actually make it through the whole 8 weeks.


----------



## crohnsinct

Kimmidwife: Oh yay!  So between the Prednisone, Remicade and Prevacid I should get the kid a walker and bubble suit because she is a broken hip waiting to happen:wink:  They did a bone density test on her in the hospital and doc explained they would do them periodically to monitor so I am not really scared.  She broke her finger back in April and they were askig all kinds of questions.  I told them they couldn't really blame Remicade or Prednisone because they girl is a clutz.  Seriously can fall out of a chair sh is already sitting in.


----------



## kimmidwife

Crohnsintinct 
I agree I worry about that risk as well, plus Caitlyn is not a milk drinker and hates vitamins as well.


----------



## my little penguin

Tums
TUMS
TUMS
when I had to be dairy free for DS while breastfeeding-
lots of tums easiest form of calcium

not too worried about DS- peptamen has some crazy calcium lock thing put into it for crohn's kids
who knows if it works...but at least he is getting extra calcium


----------



## Clash

Tums here too, GP reccomended it for daily calcium intake if C wasn't getting it through dairy. And for me too, since I'm not crazy about dairy.


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## David

crohnsinct said:


> David: why is long term use of PPI's troubling?  O has been on Prevacid for a year now.  I actually didn't know why she was on it.
> 
> Magnesium rocks!  Fixes skin issues too!


That magnesium that rocks?  PPIs can lead to low levels of it.  Considering most with Crohn's are already low, that's no good.  Same with vitamin B12, iron, calcium, and it can cause issues with a whole host of other stuff.  We're meant to have lots of acid in our stomach.

I think sometimes PPIs are called for but we need to be aware of the side effects and get off of them if/when possible (and be aware of the potential for the rebound effect).


----------



## QueenGothel

David we found it hard to kick the PPIs.  It took a while and lots of bananas. Works for me bc bananas reduce acid and makes for better poops.  Then we titrated down the bananas too.  She would get terrible stomach aches before dinner without the PPIs and she didn't need them, they were only prescribed for the steroids.  I started using calcium when she need more help then and it really helped a lot.  Sometimes they just prescribe pills when they think we are too lazy to do the nutritionally sound thing.  My biggest problem with western medicine is the fact that many doctor do not care about nutrition and are just all about the pharmaceuticals.  SOME DOCTORS, NOT ALL DOCTORS.  Of course.


----------



## DustyKat

my little penguin said:


> Biopsies will be unspecified inflammation unless they find a certain type of granuloma or ulceration etc pathologists don't like to label Ibd unless certain things are found .
> Dusty's kid did not. Have biopsy results consistent with crohn's but clearly has crohn's.
> It's just they need to find xyz then they put the label on.


Sorry, just picked up on this notification. 

mlp is spot on.  Matt's biopsies, from both scopes and surgery, did not support a diagnosis of Crohn's. An absence of granuloma's mean't all the boxes could not be ticked and so the pathologist was not happy to label it as Crohn's. The GI and surgeon were both adamant that it was though and so did not require the supporting evidence. I think we were fortunate in three areas: Sarah's history, Matt's presentation and doctors that were experienced and confident in what they saw. 

Dusty. xxx


----------



## Farmwife

crohnsinct said:


> And as for me not welcoming you...I did that way back when you joined and have been trying to get rid of you ever since:ytongue:
> 
> QUOTE]
> 
> 
> crohnsinct :kissgrits:
> 
> The GI is sending a home heath care nurse to come to the farm and put the tube in and teach me how to do the feedings. He wanted this to happen Friday:ywow: but it was 4 already and it's new years week-end so he wants it to happen on Monday or Tuesday. However, I think since New years is on Monday, I don't think anything will happen until Tuesday or Wednesday.
> 
> Wow, I go to bed early and y'all have discussions.
> Johnnysmom I don't think him not bring up EEN right away was a bad thing. The fact the Devos even does this and is happy it's done is a good thing. Right! Let's face it. Meds will be in her future at some point. Let's avoid it as long as possible.:wink:


----------



## Sascot

That's what you get for going to bed early. Don't you know you're supposed to be on this forum 24/7


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## izzi'smom

Make sure you can get the supplements before getting the tube put in. Most of the peptide based ones have to be ordered but our office didn't know this because they hadn't ever done at home ng feedings for Crohns before. 
Also, we weren't given fantastic teaching. Be sure to ask about tube placement (how to do it, how often to do it), the rate of infusion, and flushing the tube. 
GOod luck, mama! Hoping it does the trick!
A side note on fecal transplants (Mary mentioned them)-Izz's doc is planning on doing his first soon for a recurrent c diff infection. I can't wait to hear how it goes!!


----------



## my little penguin

Yeah that^^^^
It took two days to get peptamen jr since your doc has to order them from the durable medical supply place then they have to get it approved through your insurance .
Then you have to have the DME deliver it which takes about 24 hours sometimes less more if that company doesn't carry the kind you/doc wants
Also choosing a formula try to get one that is amino acid or peptide based but that she may drink orally so you can do half dose later without a tube if needed.
Once it's approved through the inssurrance it tends to stay approved.
Plus she may want to drink some during the day which is faster than the pump.
High pump rate = vomiting
But for whatever reason gulping 8 oz down by mouth in 5 seconds does not.
Make sure they give you a back pack so she can be mobile.
You may want to look for a bucket or small wagon or bag on wheels so she can pull it behind her so she is not stuck to one place.

Tubey 101 is helpful on KFA
As well as the section for no foods or few foods for kids

Here are the links
http://community.kidswithfoodallergies.org/displayForumTopic/content/3682717251787386

They talk about feed rates
Bleeping


----------



## my little penguin

More links
http://community.kidswithfoodallergies.org/displayForum/forum/elemental_diet

Let me know if you need more info


----------



## QueenGothel

I know I am a total nag.  Per redundancy protocol... Did you ever talk to them about Childrens Special Health Care???  It will cover all that your regular insurance won't cover even you gas back and forth to her appointment.

I am beings so pushy bc Rowans Peptamin costs are very expensive without it.  $170.00 for 24 cans and 3 a day so... $630.00 for one months supply.  Our yearly CSHC fee is like $400.00 and you can pay monthly.  Totally is worth it.  Then all the other meds that might come on board. Medical supplies, gas and co-pays.


----------



## Crohn's Mom

Happy to hear you are finally starting to get some answers 
Good luck with the EN treatment !


----------



## David

Myreinhard said:


> David we found it hard to kick the PPIs.  It took a while and lots of bananas. Works for me bc bananas reduce acid and makes for better poops.  Then we titrated down the bananas too.  She would get terrible stomach aches before dinner without the PPIs and she didn't need them, they were only prescribed for the steroids.  I started using calcium when she need more help then and it really helped a lot.


Great tip on the bananas!  Thank you!

Regarding the calcium, you used that to help with the acid or because you felt she was low in it?


----------



## Crohn's Mom

> Regarding the calcium, you used that to help with the acid or because you felt she was low in it


I don't know about Mary, but Gab takes Calcium twice a day, per her GI's recommendation, because she's on 40mg of Omeprazole, twice per day, and he's concerned with osteoporosis.


----------



## AZMOM

We do calc/D combo per the doc even when not on PPI. 

J


----------



## David

Crohn's Mom said:


> I don't know about Mary, but Gab takes Calcium twice a day, per her GI's recommendation, because she's on 40mg of Omeprazole, twice per day, and he's concerned with osteoporosis.


I'd talk to your doctor about magnesium as well since PPIs AND Crohn's can lead to deficiency.  While magnesium deficiency causes a whole host of problems, if he's worried about osteoporosis:


> Several human studies have suggested that magnesium supplementation may improve bone mineral density [4]. In a study of older adults, a greater magnesium intake maintained bone mineral density to a greater degree than a lower magnesium intake [56]. Diets that provide recommended levels of magnesium are beneficial for bone health, but further investigation on the role of magnesium in bone metabolism and osteoporosis is needed.


Source

Here's some additional very interesting reading from an MD that is highly pertinent, especially since she's supplementing calcium.


----------



## kimmidwife

David,
Have you found an easy to take magnesium supplement? I was looking for one for me and they were all horse pills which I couldn't swallow.


----------



## David

I actually rotate between three different forms taking one in the morning and one in the evening.  I plan to go down to one a day and am working to greatly increase my dietary magnesium intake.  They're all pretty big pills though 

There are liquid magnesium's out there but I've never tried them and know nothing about them.  After opening one of my Mg pills and adding some of it into a liter of water in an effort to make "electrolyte enhanced water" and the subsequent disgusting taste of that, I'm concerned they might not be too palatable but who knows for sure.

What happens when you take the large pills?  Do they fill like they get stuck in your throat?


----------



## my little penguin

Just be careful with magnesium 

The Neuro wanted DS to be put on that plus b2 for migraines.
Gi stated it can cause stomach upset/pain and diarrhea


----------



## David

HIGH doses of magnesium can indeed have a laxative effect, especially chloride.  Of course, magnesium deficiency can cause all those symptoms as well, along with countless other issues.  And I bet money that the vast majority of people with Crohn's disease are not getting enough Mg in their diet and those who are flaring or had an ileal resection aren't absorbing enough and are losing more than their fair share as well.  The more I read about Mg, the more I feel it plays a critical role in the pathogenesis of Crohn's disease.

The best solution is consuming foods high in magnesium throughout the day.  But that's tough without juicing.  So I personally take some in the morning and some in the evening and have been testing the various forms.

If the neurologist wanted DS on those supplements and your GI scared you off, I think your GI did you a huge disservice.


----------



## my little penguin

No Gi did not scare us off- DS has constipation as his main crohn's symptom.
Gi said he was ok with because of DS symptoms since they were not typical .
We just found his migraines were worse due to a pred wean and lack of crohn's under control.
Once the crohn's was under control and he was off the pred  no more migraines .


----------



## kimmidwife

David,
I just can't swallow big pills and Caitlyn won't even try them. I wake up in the middle of the night sometimes with those laryngospasms where you feel like you are choking and can't breathe. I read that magnesium helps prevent them so have been trying to find one I can take GNC sells a powder but it is very expensive.


----------



## QueenGothel

David said:


> Great tip on the bananas!  Thank you!
> 
> Regarding the calcium, you used that to help with the acid or because you felt she was low in it?


She gets her calcium from her Peptemin Jr., cheese and LF milk now so just on occasion when she eats something that might have irritated her belly... Too much sauce on her spaghetti.  It is a rare occurrence now.  Keep them in my purse though just in case.


----------



## QueenGothel

Thank god her Peptamin has a good source of magnesium bc I am glad she isn't deficient.  Can't really hit her with magnesium bc the lack of colon and magnesium really would make her loose. I have to have the correct ratio of calcium or she can get pretty messed up pretty quickly.


----------



## my little penguin

Peptamen is one of the reasons we worry less with DS .
It has kept all his numbers up since he drinks two -3 a day.


----------



## David

The magnesium in enteral nutrition is one of the reasons I think many do so well with it and then have issues when they go off.

Out of curiosity, does it say how much Mg is in each Peptamen?  

Could you elaborate on the, "calcium ratio" you speak of?  Thanks!


----------



## Farmwife

How many of your kids had blood in there stool 4 days after scopes?????????
It looks like spaghetti sauce. She has been having more EIM's the last two days. Also some belly pains too. Could red gateraid cause this? I did get a sample!

Yes I'm calling her GI!


----------



## Farmwife

Called the GI on-call. He said we might have to bring her down if she continues the blood loss or she just gets so uncomfortable. GREAT!


----------



## QueenGothel

The biopsies do bleed.  Keep that in mind that they removed tissue.yes red Gatorade can cause red looking poo if her transit time is faster than normal.  Rowan is still having some blood from it and had less biopsies taken.  Always better to be cautious though, glad you called the doctor.


----------



## Farmwife

That's good to know Mary but she's had normal stool since thursday. Would it still be the same?

David or Dusty or anyone,:biggrin:

Her inflammation was in her TI. What vitimans might be low through this area?


----------



## QueenGothel

David said:


> The magnesium in enteral nutrition is one of the reasons I think many do so well with it and then have issues when they go off.
> 
> Out of curiosity, does it say how much Mg is in each Peptamen?
> 
> Could you elaborate on the, "calcium ratio" you speak of?  Thanks!


It is not the ideal 2:1 ratio that I take but we try to avoid the bowel dumping.


----------



## AZMOM

I'd avoid all red foods for the time being. 

J.


----------



## Farmwife

Ya AZMOM I thought of that after the fact.
 I know it's blood but if I could live in denial I would.:rosette1:
See even with a DX I still am trying to put the bubble back together!:ack:


----------



## AZMOM

Are you having her use a hat so you can see it or are you looking in the water?  Im with Mary. Could be the Gatorade. Just avoid all reds and keep tracking.


----------



## AZMOM

And keep talking to the doc of course


----------



## Farmwife

UMMMMMM.......I forgot the hat!

But I did fish out a sample. I don't think it's the Gateraid. In the same stool was the blood part and then normal stool. She's picking up in pain this evening. We'll see how it goes tonight.

BTW, the on-call GI said there off until Wednesday. I don't think our GI thought of that!!!
The on-call GI said she might need meds until the EEN kicks in.


----------



## David

Myreinhard said:


>


This drives me crazy.  Here we have an incredibly nutrient dense concoction that provides just about every vitamin and mineral that you need and consuming it exclusively leads to remission at rates on par with prednisone.  And there is evidence that our food is 5-40% less nutrient dense than it once was and the typical western diet is often low in a variety of those nutrients.  And yet, despite the fact there are plenty of studies that showcase people with Crohn's disease are commonly deficient in various vitamins and minerals and when you provide a concoction of those vitamins and minerals it leads to remission in a high percentage of those cases, nobody is exploring the role of vitamin and mineral deficiency in the pathogenesis of Crohn's disease.

What am I missing?  What do I not understand?


----------



## QueenGothel

Sometimes red food coloring can change the food too.  I have saw apples that are stained like blood from it.  Thought I was seeing clots.  Rowan recently ate a lot of purple Popsicles and it all came out completely black and I was absolutely positive she was having a upper GI bleed.  I was wrong.  Not saying your wrong just saying don't flip your lid just yet. She has to lose a lot of blood for it to required a hospital stay. A couple of tablespoons twice a day isn't going to effect her terribly so long as she wasn't anemic... What was her HgB when she was scoped? They did do a CBC right?


----------



## Farmwife

Thanks Mary!:heart:

No labs were done!:ack:

The GI said our GP can do that and I said our GP said the GI can do that when she's scoped.
She didn't get labs yet. Our GP is on vacation until next week. Now that Grace has the DX when I talk to the GI, I'll ask for some.

I'm off for awhile. Grace is starting with the pain again. This time I'll make sure the hat is in place!


----------



## QueenGothel

They saw such little inflammation that they didn't even think she had IBD visually and she has never been anemic before right.  Just keep an eye on her.  The on call GI is probably a fellow and doesn't know your case. They always tell me to bring Rowan into the ER. They always do bc they cannot properly do diagnosis over the phone they could be sued for telling you the wrong thing. Up to you of course, you know her best.  How much blood are you seeing?  Catch it in the hat bc blood in water alway ALWAYS looks like a lot of bleeding.  Keep us posted.


----------



## QueenGothel

So surprised they did not do at least a CBC. She got an IV right?  It would have been the perfect time to get the labs then.  It is the GIs job to do her labs for he is who knows the IBD world. He can pawn off her nutrition onto the GP if he wants to but why bother doing more than one poke if you don't have to. Just saying they kinda dropped the ball there.


----------



## kimmidwife

David
being a retired medical person I feel qualified to answer that question.doctors are trained to treat disease not the whole person.as a nurse practitioner we were trained in holistic medicine not just to look at the illness and treat the illness but to look at the person as a whole.now they are trying to change that in medical school the posh now is to look at the whole person and try to take a more wholistic approach and a preventative approach. but as they say it is very hard to teach an old dog new tricks and who are the teachers in medicine? it is the old dogs!


----------



## my little penguin

David
The problem with EN is they are not sure why or how it works.
The researchers know it works well in children early on when they are first dx.
They know they have less success at remission with EN in adults ( could be type of disease - fistula, structuring etc vs inflammatory )
I am of the theory of more than one subset of Ibd -especially since my kid doesn't fit the mold.
Partial en continued in children lowers the rate of relapse.

FW
Talk to the on call Gi- listen to the Gi especially since this is new
Watch her ..... You know your child - if your not comfortable take her in.
It's a learning curve .
There things now like Mary - I am less freaked out about .
Definitely things about his asthma - I know when to hit that panic button.

But medical advice from the Internet not matter how well intentioned is not something you should be doing.....
Talk to her doc , listen to her doc 
And update us as you can .
We are here for support and hugs
Your docs are there for her care.


----------



## Farmwife

MLP 
So true about not seeking medical advice here. I didn't feel I was. I was seeking forum friends opinions. I do know all to well that her docs and us have to make the medical choices for her. I will however try to word things in a different way. Thanks for the insight!


Grace had some more knee and neck pain at church tonight but no tummy pains! YA!

Mary I did apply for the insurance. It will be a couple months before we know.


----------



## QueenGothel

Yay!  I am sooooo very happy you applied.  They approve all IBDers so I am sure you will get it.  It really is a Huge help!  

FW glad you realise I am not giving any medical advice.  I was just giving my opinion specific to biopsies and bleeding.  It does happen and can be intermittent and should be expected.  It is considered normal after a scope.  Did they tell you that to expect it?  I am just saying it bc our kids were scoped and biopsies the same day. 

And yes MLP I am a mom that knows what too much blood looks like bc Rowan was a bleeder.  But it is my kid and not hers so it is different bc Grace has different issues also.  It is weird how it can become normal to be use to seeing blood.  Rowan has been pooping a tsp of blood 3 times a day for 7 months now and she is not anemic. With that being said I also give her a heavy dose of iron and VitC.  So I know she is building too. 

I remember when this all started and the blood would scare me so much I wouldn't sleep and couldn't watch scary movies without having nightmares.


----------



## my little penguin

Mary and FW - I realize you were just stating your mommy opinions etc...
But I wanted to make sure all ( the Millions of FW readers  ) were aware 
That our opinions were not replacing those of her  Gi since she spoke with her Gi tonight 
Specifically on what to do In this case about the bleeding .
Especially since some ( not the regulars here ) only use the Internet for advice without consulting a doc .


----------



## crohnsinct

PPI's: I have been trying to dump O's for about 6 months.  At first it was she needed it because of the Prednisone, then when she stopped Pred and  I was told she had stomach inflammation during scope, then it was the EN, I wonder what his excuse since July is?  We are moving down though.  But here is the funny thing...O forgets this one all the time and not one single complaint!!!!! I am really going to push dropping this as soon as possible. 

Magnesium: I have been told by our derm that magnesium is key to skin issues (didn't know about the headaches...good to know as my younger one suffers terribly from those).  Our sourse for Magnesium is Hemp Hearts.  They come from teeny tiny seeds (she has no seed restrictions) and taste like sunflower seeds.  3 tbs a day gives you 45% of daily recommended allowance of Magnesium and also has 20% iron, Zinc 20%, Thiamin 25%,Folate 8%, Manganese 110% and is supposedly a great source of protein.  O sprinkles them on salad, yogurt, in smoothies and really just eats them right out of the bag.   

Calcium: O takes two Adora's a day.  They are gourmet chocolates (that happen to come from CT but they are marketed nationwide) and are fortified with Calcium and vit d3.   

David: so right there with you on the food supply and EN!!!   

FWIW we purchased a vitamix type machine and are pulvarizing lots of veggies and fruits for O to drink.  The rest of the family also.  Lots of vitamins and minerals going in and seeds are chopped super duper small.  Don't know if it is helping yet but I feel better having her drink these if she won't drink an EN shake a day mine as well be this. 

Infusion tomorrow and the extra blood being pulled and weight taken...here's hoping the holidays with the Grandma's fattened her up a bit!


----------



## David

Whoa, hemp hearts sound amazing!  Where do you get yours?


----------



## crohnsinct

I think they are. On O's thread I mentioned a lot of fatigue.  Since she has been eating these she has been back to her old self.  There is a bunch of stuff out there about the Omega's in them and the protein and what a great source of energy and nutrition etc.  Could be coincidence that she rebounded at the same time but just in case we aren't stopping.  

We get them at  Whole Foods.  The Hemp Hearts are from Manitoba Harvest (orangish bag) maybe you could find a retailer by checking on their website. manitobaharvest.com.


----------



## David

I found them on Amazon.com here and just ordered some.  I'm super excited about this, thank you so much crohnsinct!  I've been trying to find good sources of magnesium to add to my diet AND this has tons of manganese which I've been looking for as well.  Great stuff!  Thank you thank you thank you!


----------



## crohnsinct

You are so welcome.  I at least owed you that and a whole lot more!  Let me know how you like them and how they work for you.  They are really yummy!


----------



## kimmidwife

Crohns instinct thanks so much! I am going to go to Whole Foods this week and pick some of those seeds up as well. They sound like just what we need!


----------



## Farmwife

my little penguin said:


> But I wanted to make sure all ( the Millions of FW readers  ) .





Come now mlp. Millions???? Thousands maybe.:rof:


Grace is not eating and the pain is there.
 Hoping the day will settle down for her.:hug:

Today is my big clean day. Holiday/Travel/Sickness=Dirty House:voodoo:


----------



## DustyKat

Farmwife said:


> Her inflammation was in her TI. What vitimans might be low through this area?


When you have bloods drawn ensure they add: 

B12, Folate, Iron Studies, Vit D, Calcium, Magnesium and Zinc. 

Dusty. xxx


----------



## Farmwife

Thanks DustyKat.

Now what is "iron studies"? She had iron level taken before. Is there more than one?


----------



## DustyKat

Yes, it is more than one and it estimates the amount of elemental iron carried in the blood and stored in the body tissues.

Dusty. xxx


----------



## QueenGothel

Hope she is feeling better today and 2013 is a great year for Grace! Ill be back to check you guys later on.


----------



## izzi'smom

Just checking in to send some love Gracie's way! :heart:


----------



## QueenGothel

Any more blood today?  How is she compared to yesterday?


----------



## Farmwife

No more blood but no poo either. 
She's diffidently more.....worked up, tired and keeps trying to poo but can't.
 More leg pain and now weakness of the left leg.

No call from Devos.:voodoo: I'll call tomorrow.:ysmile:


I'm tired and have told my 5 yr. old he can stay up with daddy until midnight.
Now I don't feel so guilty when I go to bed and leave the hubby alone!


----------



## Farmwife

my little penguin

Is there a video on n-g tubes and feeding. I want to see it!
 I told ya I can't navigate new web-sites. I JUST figured out this one.:voodoo:

To tell ya the truth I'm getting a little nevus over using the tube.
 I'm getting nerves over the whole thing. It might be because of seeing her get worse and now that I know what this is I feel a little stressed. MAKE SENSE? If it does to y'all, explain it to me PLEASE! :shifty:

I need to sleep. Good night and good New Years! Who knows what the future holds. 

If I disappear for a few day it's because we're downstate and I still have no fancy pant phone to type on. Enjoy the silence while I'm gone!:dance:


----------



## my little penguin

http://www.apfed.org/downloads/Feeding_Tubes.pdf


----------



## my little penguin

> We are dealing with an NG tube - which involves some different education than the G tube. Here are two very important points:
> 
> Do not go home from having the NG tube inserted without someone teaching you how to check that the tube is in the proper place. There are two methods to do this, and one involves drawing out a small bit of stomach contents with a syringe, and the other involves pushing in a tiny amount of air with a syringe and listening to the stomach with a stethoscope for a bubbling or burping sound. Please get specific instructions from your doctor or nurse and have them show you how to do it before doing it on your own - do not take my advice as medical instruction. There are specific details and amounts to know before doing this. Instructions on checking placement that I have found vary from doing it before each and every feed to doing it once a day - please check with your own doctor.
> 
> The NG tube will need to be flushed with water using a syringe. For us, it is before and after every feed. Again, please check with your own doctor as to when they want you to do it and what amount of water they would like for you to use.
> 
> Both of these things are quite important, and I just want to make sure that everyone has this knowledge when they come home with a new NG tube. Sounds like common sense stuff - yet I did not know either of these things and if not for KFA I still might not know about them.


From:
http://community.kidswithfoodallergies.org/displayForumTopic/content/3682717251787386


----------



## my little penguin

http://www.cincinnatichildrens.org/health/i/silastic-feeding-tube/


----------



## DustyKat

Farmwife said:


> I'm getting nerves over the whole thing. It might be because of seeing her get worse and now that I know what this is I feel a little stressed. MAKE SENSE? If it does to y'all, explain it to me PLEASE! :shifty:


I sooooo know that feeling...

You have a child that is visibly ill and only getting worse. No one has answers and you find yourself living on your nerves. You are wound up like a spring and ready to take flight like a gazelle at any moment. Then finally you have an answer! At the same time you realise you have been holding your breath for so long that the relief of letting it go is heaven. 

This heavenly feeling lasts not nearly long enough because as the cold hard light of dawn strikes so does reality and the uncertainty of the unknown becomes the uncertainty of the known. There are many differences but just as many similarities and yet it all equals the same thing...continued stress, worry and heartache for the precious child in your life that you hold so dear. 

There is one constant unchanging thing though: You are not alone, you are among friends that know exactly what you are experiencing and that is priceless.  

Dusty. :heart:


----------



## Lewiss mum

Hi farm wife I just wanted to say I'm glad you've got some answers about Gracie and your mummy instinct was correct . My instinct kepted pushing for Lewis to , hope her bleeding settles down lew had some streaky  bleeding for about a week after but they took lots of biopsies and one from were his scar tissue was in his rectum. Hope you have a settled new year , I'm currently  up at 3.30 am u.k time with lew he's having a rough time at the minute let's hope now we have our diagnosis we start to get our babies better


----------



## izzi'smom

Ditto to MLP's post re: being sure that you feel comfortable checking tube placement. And Dusty always puts it so eloquently. So I have nothing to adsd but love. Happy New year, mama, and may 2013 be the year that sweet Grace finds relief. :heart:


----------



## Suzysu

I haven't had time to catch up on all the threads - I ust wanted to say I am both sorry and relieved that they found the inflammation. I hope the EN gives her some relief and is not too tricky - sending lots of good thoughts and hugs your way xxxxxxxxxxxxxxxxxxxxx


----------



## xmdmom

I'm sorry you and Grace have been having such a difficult time. My only advice would be to take it one day at a time.  You need to find out what the biopsy report says and whether the inflammation that was seen means Grace has IBD.  As David has pointed out, you can have inflammation in the GI tract for other reasons than IBD which could be BETTER for Grace. You can get inflammation due to colonoscopy prep, infections and NSAIDs and some inflammation may resolve by itself.  So I know it is difficult to be patient for a diagnosis when your child is sick but it's best to have the correct one!  In terms of NSAIDS, when was the last time Grace took them and did she use them a lot in the past for her pains?  NSAIDs can cause inflammation in the gi tract and also aggravate IBD.

Hope Grace will be feeling well soon!


----------



## Sascot

Sorry to hear Grace keeps getting pains.  I hope she has managed to go poo and the blood is stopping. Frustrating when the docs are off for holidays.  Always amazes me how much manages to happen at weekends just when there are fewer people to help.


----------



## Farmwife

Dark blood in her poo again.:voodoo::voodoo::voodoo:
But normal came behind it. Hopefully that will be it.:shifty:





xmdmom said:


> In terms of NSAIDS, when was the last time Grace took them and did she use them a lot in the past for her pains?  NSAIDs can cause inflammation in the gi tract and also aggravate IBD.
> !



xmdmom Grace hasn't use those in a year or so. Even before that she never really used them to much. We've always favored Tylenol for all of us here.:heart:
I've looked at the hubby twice and said the inflammation could be from something else. He smiles and said...you optimism is cute!


Called again and NO ONE IS IN UNTIL WEDNESDAY!:voodoo:
I can't believe this. She has a dx and still have to wait.:voodoo::voodoo:



Good news. I got a new pair of cowgirl boots. :dance:
 Happy New Year to mommy!!!!!:wink:


----------



## QueenGothel

Call Devos and ask for the On-call if your are worried. They change so often during the Holidays I have lucked out and gotten Rowans actual Surgeon. There should be an attending GI at the hospital during the day.  There always is @ Mott's so hoping this holds true at Devos.


----------



## Farmwife

When I called before the nice GI said that it's to be expected because of her dx. If she has fevers or "goes down hill" to bring her down. I'm not worried yet. I think it's just left over from the colonoscopy.


----------



## Johnnysmom

I remember when Johnny was first diagnosed.  I kept thinking "maybe they made a mistake and they will find out it's really just some sort of infection" ...   I really wanted it to be something else but Johnny's diagnosis was pretty cut and dry.  I think it is absolutely normal for you to have a certain amount of disbelief.  I know too once you settle on a course of treatment you worry "will it work?", "what if it gets worse?", "how long will it work for?", "what is our next option?".   No wonder your head is spinning.  But somehow you find a way to live with all of these questions because I don't think they ever go away.  It's just part of this disease.

There are so many things to be grateful for.   Grace is getting great care, two parents who love her and will take care of her.   She also has lots of treatments options available to her and new ones being developed.  My heart breaks when I think of some small child in some 3rd world country somewhere suffering from this terrible disease with no medical care.  You will figure this out.  And you will learn to live with this new reality.  Some questions will be answered and some probably won't for now.  But one thing is for sure that you are doing everything in your power right now for your little girl and that is all any of us can do.  :heart:


----------



## Twiggy930

So sorry to hear that you are still having to wait for responses from the docs.  I hate waiting to start treatments and I hate waiting for treatments to work. :voodoo:

Is the hospital not going to teach you and Grace how to insert the NG tube???  I think it would be helpful to have someone who is used to inserting them (preferably in children) show you how to do it the first time.  If the GI docs aren't willing to set this up for you maybe you could call the hospital and set it up yourself.  Or maybe there is a community health nurse who could come to your house to help you with it.  Or maybe you know a nurse who could help you with it the first time.  I am not doubting your abilities, I just know I would have wanted someone who had done it before around to teach me how to do it. 

One tip we used when starting my son on the NG tube was to coat the end of the tube in the numbing gel you use on teething baby's gums to numb the inside of the nose.  It worked pretty well and after a few times he didn't need it any more.

chronnsinct or tesscorm once posted a GREAT video of a girl inserting an NG tube.  I will try to find it.

:hang: it will get better


----------



## Farmwife

Twiggy930
Her GI said he would set up a home Heath care nurse to come the farm and show me how to do it. I was under the understanding it would be a permanent placement of the tube.

I've been thinking though....I would prefer to go down there. I'd rather have a nurse that's worked with children and put the tubes in. Also I want to talk to the GI face to face. I have more questions. It's just last time we tried this EN she bleed a lot. That's what got us the scopes in the first place. The GI never found where the bleed came from during the scopes. Meaning it's in the part of the GI track the scopes can't reach. MRE, in my mind should be done. I asked him but he didn't think that needed to be done yet. I guess I don't agree and he has to explain it to me better. Lots of questions in my mind. It could just be nerves?:smile:


----------



## my little penguin

Hugs
Ng tubes are NOT permanent placement.
Grace will and can pull it out/ cough it out etc...
You need to be prepared on how to put it back in.
You will need to learn how to care for it ( flushing , checking tube placement etc...)
Since she bled badly on boost kids you may want to ask for an amino acid based one without milk protein ( neocate or elecare jr.) discuss with your gi
You will need a kitchen gram scale for these measure the formula by the gram NOT with the scope it can make a big difference.
Or just order the juice boxes e028 splash
That way if she wants to drink them she can and no mixeing on your part.


----------



## my little penguin

E028 splash is amino acid as well- no juice 

I think it's good you want to go see the Gi .
Just be prepared it may be up to a another full week until you get all your ducks in a row with insurance coverage etc... Since its already Tuesday


----------



## izzi'smom

NG tubes can stay in as long as 6 weeks, but placement should be checked at least daily, as it can come out of place when she coughs or if she vomits. 

(Although Izz vomited when she first got hers...I believe it came out of the stomach and went into the esophagus at this point. I believed I was checking placement but because I wasn't ever properly taught, I was probably hearing air whooshing into her esophagus, not her belly). The imperative thing is that it isn't in her lungs-and yes, I would go to the hospital to get it done, preferably by someone who has done them in peds. Ask for the throat numbing spray.  We were told we could go back in to get it put back in if necessary.


----------



## QueenGothel

Nothing's permanent.  But once you watch and learn a few times it you will feel more confident than the home nurse.  That is how I was with the home vac changes. I was instructing the nurse before long. Kinda crazy how quickly your new normal can set in.  You'll do great. Rowan didnt have a feeding tube but a suction tube I am sure the placement is similar and in just sleeping it got moved, granted hers was a way bigger of a tube I am sure, but she needed two replaced during her takedown bc if this fact. I learned how to get the suction working how to hook it up how to switch to a portable without needing the nurse to help me.  It became my new normal pretty quickly.  Granted I never had to put one in but there were issues where it had moved in her stomach and was sucking on the side wall instead of in the middle where it was supposed to be.


----------



## my little penguin

http://community.kidswithfoodallerg...nt/3682717251787386/reply/lastReply#lastReply



> If you are not sure about NG placement and the things that Amanda suggested aren't giving you anything, you can open the port and hold it in a small cup of water. If it is in or near the lungs, you will get little bubbles coming out of it. I often can't hear the little "woosh" from the air going into the tube and sometimes don't get stomach contents back. This is what they told me to try.


Ask your Gi about this - not sure ....


----------



## Farmwife

my little penguin said:


> E028 splash is amino acid as well- no juice
> 
> I think it's good you want to go see the Gi .
> Just be prepared it may be up to a another full week until you get all your ducks in a row with insurance coverage etc... Since its already Tuesday


MLP this is it. I knew the kind he said ended with a splash.  :hug:

He also said a kind of drink that started with a P I think. Keep in mind I was in shock at the fact that the biopsies came back so quick and that they saw something and the her GI was concerned now. 

He also said I could keep her on Boost until the EN happens. I might go get some more. She's constantly hungry but only wants a few bites. The shakes might help fill her up.:kiss:

The GI I talk to said going down there might get things moving faster.
I'll ask tomorrow. I'm OK with going if it would be the best. I just want to learn to do it right. She's only three and I know mentally she's already dealing with so much. Each time she goes poo she begs me not to put the medicine in her butt. Poor girl. I hate this!

Thanks everyone!:hug:


----------



## my little penguin

Peptamen  junior  is the other one that starts with a P.
But it has milk protein just in peptide form.
Call neocate in. The am they will send you a six pack of three flavored ( 2 each)
So she can try them
You want one she is willing to drink so you can continue at half dose once she is done.
Orange is the best I think but I am an adult.


----------



## my little penguin

https://www.neocate.com/shop/p-24-e028-splash.aspx


----------



## Farmwife

my little penguin said:


> Peptamen  junior  is the other one that starts with a P.
> But it has milk protein just in peptide form.
> Call neocate in. The am they will send you a six pack of three flavored ( 2 each)
> So she can try them
> You want one she is willing to drink so you can continue at half dose once she is done.
> Orange is the best I think but I am an adult.


What mlp?


----------



## my little penguin

1-800-365-7354

Call neocate - the company they will ship 6 juice boxes to your house to try.
For free
Two of each flavor
Your Gi may have samples as well.


----------



## Farmwife

I called already. Left a message. Thanks.
 If she could drink it, then a tube won't be necessary right?
She was able to drink 6 boost a day before. But then again over time she might stop. HMMMMM........


----------



## Dexky

Did she just get tired of Boost?


----------



## Farmwife

No Dexky but she bleed after two days and her GP said stop!


----------



## Dexky

Which Boost was it?


----------



## Farmwife

Boost Kids Plus- Or was it Boost Kids Complete 
I forget. I hit my thirties and am just happy if I remember my name!:rof:


----------



## Dexky

30!!  Pup!!

I was only asking because if I'm not mistaken they all have gluten and milk protein except for Boost High-protein.  We buy those for EJ to try to add nutrition.

Actually, after looking at their web-site, that is not the case!  Eh well, just grasping at straws!


----------



## crohnsinct

Hey FW: weren't you using some NSAIDS recently when Gracie was doing very poorly with fevers and such?  Maybe just maybe that could help explain the inflammation.  See I am in that bubble with you...BUT about to drag you out...honey, you really do not have a dx yet.  Maybe that is why you are still feeling so nervous.  Basically all they have told you is yes there is inflammation...not really the definitive cause...so cut yourself some slack..of course you are nervous. 

I hope the EN works and the girl inserting the ng tube video was on O's thread.  Will try to go get it for you.


----------



## Farmwife

Your right! Shocking I know.:tongue:

I gave her a dose of mortin when her knee was hurting for hours on end. I think I did that once or twice. That was awhile ago. 

Ohhhhhhh......maybe the bubble can come back! You can have the rocker next to mine.:hug: My front porch looks over a beautiful meadow and lake.


----------



## xmdmom

Farmwife

In terms of the ibuprofen, I'm confused because your earliest post said you were giving it to her in April.  Is that when you stopped?

It's still a mystery as to where the blood is coming from if there were no ulcers seen.  I don't think microscopic inflammation causes visible blood -- does anyone else know?  Please ask your doctors about this, ok?

In terms of the EEN,  it's helpful in Crohn's but apparently not in UC.   I'm sort of surprised your doctor wants you to do this giving a clear diagnosis of Crohn's, or perhaps I missed it. If so, forgive me.  I could imagine Enteral Nutrition if Grace is underweight-- is that the issue?

Hugs to you and your family.


----------



## my little penguin

If she is willing to drink the splash then no tube needed.
Splash let your Gi bypass a whole lot of "stuff" to fix her since as others said you know right now she has inflammation which can be caused by lots including food.
Good luck


----------



## Farmwife

Nope xmdmom your not confused I forgot that I DID give her ibuprofen for knee pains. I'm looking over my journal as we speak to see when and how much. I tell ya this is what happens when your a older mother. I'm just happy if I can remember my kids name!

Good question about the blood. When the scopes came back clear in the stomach (where we assumed the blood had come from) my hubby asked about where the blood came from. The GI didn't have an answer. Remember he didn't think she had anything wrong in the first place. When I asked him on the phone after hearing the biopsy report he still didn't give a clear answers which is why I asked for the MRE. I believe her problem is small bowel that the scope can't get to? Does that make sense? The GI said no to the MRE.


----------



## crohnsinct

HA!  Found it!  Do I get a prize? 

Here is the video of that dearheart inserting her tube.  IT was on the EN thtread. 

http://www.youtube.com/watch?v=YJIFOCbPTjo


----------



## my little penguin

CIC chocolate wine for you


----------



## Farmwife

:ghug:Thanks crohnsinct I watched the video with Grace.  Thanks that girl did a great job.

If she could drink this I would be so much happier!:yrolleyes:

 I'm off for a few days.:hug:
 We've been so sick that we've had NO Christmas break.
 I'm planning some sledding parties, mall trip and crafts. 
Also visits with some friends and family.
 I'm really looking forward to it.
 I just pray Grace holds out. She needs some fun too.


----------



## my little penguin

:ymad:One thing to also keep in mind some insurance's only cover formula if its taken by tube

So at  four boxes  a day ....a case would last 6 days .
So 8 weeks = 9 cases


----------



## QueenGothel

Not true with the Children's Special Health Care through the state of Michigan she will have and they will go back 3 months.  Mine are covered and Rowan drinks them.  The office will have to go through a pre authorization process pushing it through the first one showing it was not covered by her primary and then the secondary will send her a letter and for how many months they will cover it.  It took about two weeks.


----------



## my little penguin

Mary wasn't yours only going to cover peptamen but not the amino acid one?
That may be something else.
Ours covers DS 100% regardless of kind without a tube but most don't .
Some won't even cover with a tube .


----------



## QueenGothel

That was hearsay that the dietician told me about elecare only.  So far we did get Peptamen Jr, Nutren Jr, and PediaSure Peptide covered.  I don't think the ladie wanted to give me her Elecare from the milk room. She was being pushy kind of about the PediaSure Peptide, said Rowan would waste it bc it doesn't taste as good.  She had never actually even checked with our insurance.  Just was stating her opinion.


----------



## kimmidwife

I think most insurances will cover it as long as the doctor writes a letter of medical necessity that is what our doctor had to do. It took a few days but was covered in the end.


----------



## Sascot

Hope you have a really nice few days catching up on shopping and visiting friends.  Glad you are all feeling a bit better again!


----------



## Dexky

my little penguin said:


> CIC chocolate wine for you


Yuck!!  You'll need a feeding tube for that too!!


----------



## izzi'smom

Dexky said:


> Yuck!!  You'll need a feeding tube for that too!!


A feeding tube???? BAH! and waste tasting the delectable combination of chocolate and alcohol?? Surely you jest, Dex!

FW...enjoy your time off with thoselittle ones...:heart:


----------



## crohnsinct

Trust us Dex...this is just one of those things that sounds gross but is really very good!


----------



## QueenGothel

Accidentally hit unsubscribe. So just posting to get the updates back, hope Grace is feeling better, let us know how the doctors appointment goes as I am sure you will.


----------



## Farmwife

Quick update! Sorry this might be vague as I'm heading out the door.:rosette2:

JUST hear from GI nurse.


Inflammation is Chronic and acute.

The rectum had no inflammation but had (sorry forget the name) something that had to do with allergic reactions that's normally seen in the blood.

He took 6 total biopsies. That's it! :yfrown: 3 from upper GI and 3 from lower GI track. TI, colon and rectum for the lower.

They sent the report to her GP. I'll try to get that soon.

NG tube for 1 month and then a phone consult with the GI to judge how it's going.

_Could this be Allergic Colitis_? I've heard of it before. That's along the lines of ME.
Any thoughts?:shifty-t: I know your not doctors!:ybiggrin: Well most of you!


:soledance:We're having a great time. She's sleeping through most of it but she's such an angle when she sleeps.:biggrin:

Sledding, cookie making and friends visit tomorrow.:thumright:


----------



## Jmrogers4

Thanks for the update. Go have some fun with Grace and hope you get all your questions answered soon and she is back to a healthy happy little girl


----------



## my little penguin

Get the biopsy 
May be eosinophilic colitis - they would have found EOS in the rectum
Basically - used to be called allergic colitis - since infants couldn't handle milk and would bleed.
This what Gi was convinced DS had before he was dx.
If its allergic colitis - the fix is no milk
But if its EC it is much more complex
You can also have EC and IBD.


Treatment for EC is steriods and elimination of food triggers
The EOS cause the inflammation and scarring.
There are no real drugs.
Just steriods ....
Most opt for a diet free of the top eight allergens 
Milk wheat soy eggs tree nuts peanuts fish and shellfish
75% clear on this diet meaning they rescope and there are no EOS present
If not they go in an elemental diet ( aka splash or neocate or elecare)
For 8 - 12 weeks and rescope
If that's clear then ...
Slowly trial in 1-3 foods every two to three months then scope to confirm no EOS .
Once you get enough food back the. No more formula.

If she had EC you need to schedule an appt with Cincy cced today .
The wait list is close to a year- maybe less now- they hire another Gi so maybe two months again for their week long program
Kids from around the world try to get in --- yes it is that good

Or national Jewish hospital in Denver .

EC is very rare and fewer Gi know how to properly treat it.

It can cause a lot of damage if not treated properly.

Links you will need


----------



## my little penguin

> Eosinophilic Colitis (EC)
> 
> 
> 
> Eosinophilic colitis is a rare disease in which a type of white blood cell, the eosinophil, causes injury and inflammation to the colon. Eosinophilic colitis may affect both adults and children. The cause is unknown in many patients. Some infants may have milk-soy protein intolerance which may look like eosinophilic colitis but is typically outgrown.
> 
> 
> 
> Symptoms:
> 
> Vomiting, nausea, diarrhea
> Difficulty feeding and/or gaining weight
> Poor growth and weight loss
> Abdominal pain
> Bloody diarrhea
> Anemia (low blood counts)
> Malnutrition
> Fatigue
> 
> 
> Associated Diseases:
> 
> Environmental and/or food allergies in some
> May occur in conjunction with other EGIDs
> 
> 
> Causes:
> 
> Unknown
> 
> 
> Diagnosis:
> 
> Lower endoscopy or colonoscopy (placement of a lighted tube into the anus, rectum and large intestine)
> Biopsies of the large intestine are necessary to make the diagnosis. Eosinophils causing injury on biopsy, in the context of symptoms consistent with EC
> 
> 
> Findings:
> 
> Endoscopy may show erosions, ulcers or irritated areas of the large intestine
> Biopsy: Eosinophils invading the large intestine. Biopsy may show chronic inflammation. No consensus recommendations on definition or diagnosis.
> 
> 
> Allergy Testing
> 
> Allergy testing may be helpful in some patients to identify and remove offending food allergens.
> 
> 
> Treatment:
> 
> Avoid known food allergens or triggers
> Systemic Steroids (prednisone)
> Elemental diet (avoid all food protein and obtain all nutrition from a special formula)
> Iron supplementation if iron deficient
> Nutritional support as needed
> Anti-inflammatory medications for the large intestine
> Topical steroids (


From:
http://apfed.org/drupal/drupal/Eosinophilic_Colitis_Quick_Facts


----------



## my little penguin

http://community.kidswithfoodallergies.org/displayForum/forum/eosinophilic_disorders

And 

http://www.naspghan.org/user-assets/Documents/pdf/WG Reports 2008/EGID.pdf


----------



## kimmidwife

Thanks for the update! Hope you get to relax a bit and enjoy!


----------



## Sascot

Glad you are having a good time.  At least it's not long till you can discuss everything about the biopsies.  My super brain has no info on allergic colitis - sorry :blush:


----------



## Farmwife

OK David and MLP and everyone else.:dance: I have the biopsy results.:shifty: I just have to figure out how to scan them get it on the forum.:ywow: I should be able to post the results in a year or two.


----------



## Farmwife

I hope this worked!

If you give me good news I'll send you a farm wife fantastic home-made apple pie.:dance:  Good news means you tell me this is a easy fix!:kiss:


----------



## Farmwife

It worked. I can't bloody believe it!

So David or whoever can read these. Please remember Grace has had this (problems) for years!

MLP we had Grace off of milk and all dairy products since she was 3 months old. At three the GI had her go back on dairy to see if it flared thing further and it NEVER changed anything. Also she's had allergy testing twice and It never showed any allergy.
But still I'll be more than willing to take her off of anything if it will heal and or help her body in any way!


----------



## xmdmom

Good news! "The chronic changes are minimal."


----------



## Farmwife

Yes:dance:Yes:dance:Yes:dance:

I'm very happy about that.


BUT:shifty: The hubby said.....what does the rest of the track look like?

The bad constipation and rectal pain has just started in the last 6 months.
 The rest (abdomen pain, flank pain, joint pains, eye pain and skin rash) have been happening for years.:ywow: So in my hubby's mind and a guess a bit in mine:wink: is what does the rest of the track look like.


Still at least that's a bit of good news. My bubble is looking better and better


----------



## my little penguin

Ok mommy opinion not doc opinion
So you need to talk you yours....
EOS - the eosinophils they found through out her colon and rectum would indicate EC which is different than allergic colitis.
The hard part is there is expected to be some EOS in the Gi tract ( about 30) but that can vary by location also to make matters more confusing you can have some EOS with Ibd .

Even if you pulled milk for a while that would not necessarily been all of her triggers.
See top eight allergens above
Plus if you cooked with it or gave her Anything that was produced on the same line or in the same facility as other products containing milk ( ie crackers, cookies etc)
Then her body would still be getting trace amounts and react.
EC is a mixed IgE reaction so the reaction can be days later and can take compounding amounts to build to a full fled flare.
That is why most kids with egids have to trial a single ingredient for up to 3 weeks - some fail within a week.

This would explain the extreme pain etc when she went boost only .

You really need to call cchmc cced TODAY
Talk to the intake coordinator - they can help you figure out how to get in and have her take part of their weeklong program .
This is a life long thing and 4 weeks of formula will not fix it.
That is only the beginning
But if you can identify all her food triggers in a few years ok ten she should be close to normal no drugs.
KFA has a large group of moms who live and breathe egids
I do not so they could tell you more of whAt to expect and which hospital is best.

EC makes more sense given her age and issues from birth


----------



## my little penguin

http://www.cincinnatichildrens.org/...sorders&utm_medium=shortcut&utm_campaign=cced

Call the wait list is long and she need help


----------



## my little penguin

The top egid doc there would be DR Putnam .
That is who you want


----------



## my little penguin

Btw if they read her biopsy report and don't think it's egid related they will not waste your time and schedule you in the cced.


----------



## my little penguin

> Eosinophilic Gastroenteritis
> • Gastrointestinal eosinophilia in 2 or more locations of the gastrointestinal tract:
> Esophagus
> Stomach
> Duodenum
> Right Colon
> Left Colon
> Eosinophilic colitis
> >15 per HPF >10 per HPF >10 per HPF >20 per HPF >10 per HPF
> • Eosinophilia limited to the colon
> • Exclude other causes (parasites, IBD, medications,
> systemic disorders)


Ok just look at the table from here- her numbers are above 
Read the paper to your DH

http://www.parentsown.co.uk/files/Eosinophilic Disease.pdf


----------



## Farmwife

Thanks MLP!

My hubby is here with me and we're trying to figure out your last post.
Sorry I relay should be smarter.

Her numbers?


----------



## my little penguin

In the path report her numbers are 30-50 EOS
Or eosinophils (EOS) in her colon and TI
But are 10-20 in her rectum
So above the 10-20 range seen in the lowr Gi tract normally per table 2
More than one area so EGE 
Not just EC


----------



## Mylittlesunshine

Hi farmwife
I've just been reading ur story about ur lovely
Little grace. How is she? My little girl is also 3 
4 in a couple of months.


----------



## crohnsinct

MLP can I just say that you totally and completely rock!  I literally have tears in my eyes seeing all this awesome information and help you are giving farmwife not to mention every one else here.  You are truly an angel deserving of your own fan club!


----------



## Farmwife

Mylittlesunshine said:


> Hi farmwife
> I've just been reading ur story about ur lovely
> Little grace. How is she? My little girl is also 3
> 4 in a couple of months.


First Mylittlesunshine I love the name!:heart:

I was thinking since I'm from northern Michigan about my name being Mylittlesnowflake but that's just to long to write.

Well you know how it goes. It's hard enough having a spirited 3 yr. old but have one with health problems....I need a lot of Tylenol!:wink:

We've been very blessed that Grace has never showed her sickness.  A blessing and a curse. She however, she is ill and I'm trying to wrangle all the people in place for her health care:voodoo:. She' about to start EEN for what could now be awhile.:shifty:

How is your little one?


----------



## AZMOM

FW - am I remembering that EN starts next week? Does the biopsy result change the plan at all?  

Thinking of you all and hoping Grace is ok. MLP is giving you some great advice!

Julie


----------



## Farmwife

AZMOM
No the GI knew the biopsy results and that's why he wanted her on it right away.
Their coming tomorrow. I just got off the phone with the equipment company. I'm just waiting for the home nurse to call and tell me the time.

I'm just thinking out loud MLP but do you think the GI thinks this to?

How will we know if it's IBD or EGE?

Does anyone on the forum have both?

We meet with the GP on Tuesday and will be discussing this all. We are more then willing to go to Cinny if that is what it takes.


All I know is Grace is going to sleep herself into a coma soon. I hope the EEN helps perk her up.


----------



## AZMOM

I don't know of anyone with both. 

Let us know how it goes tomorrow. 

Hugs,

J.


----------



## my little penguin

I know of two on KFA
EC & uc
Other crohn's EGE


----------



## Mylittlesunshine

Farmwife I hope the NG tube feeding goes well
My daughter has had it a few times when been in 
Hospital, it gives a lot of relief we found. 
Thinking of you both


----------



## Sascot

Good luck getting the NG tube in and the EN started.  I truly hope it does wonders for her, she (and you) deserve a break!


----------



## my little penguin

FW
The problem is EGIDs are rare and new ( 10 years or less )
Given all that she has going on you need to take her somewhere that they are experts in egid/Ibd 
Where she would not be one of 
But more routine for the docs .
I don't know what your Gi is thinking
But given he only took 6 biopsies - total .......grrr
In order to rule out EoE which is what effects the esophagus you need to take a minimum of at least 3 biopsies usually more so that could be coming into play as well.
I just feel for you.
I do not know how they rule out Ibd and egid but I do know cchmc was able to do it easily for my son without even seeing him .
We sent all the records and scans and biopsies - including a picture of the child so the docs connect better.
They hold an interdisplinary team meeting on each kid - discuss each kid and then determine the likelihood of egid - if its high then and only then so they schedule an appt.
They have the same process for the Ibd clinic so when you arrive they really know your child and they do not waste any time .

If it were my child I would call cced try to get ask about the process for dr Putnam 
He is the best Gi hands down  and DS has seen him - but not as a egid patient .
Thankfully that was ruled out by phone .

They have financial specialists who are used to nothing but out of town/ state / country patients so they are a whiz at insurance .

Top Ibd places you already know
Bch
Chop
Cincy

Top egid places
Cincy
Chop 
National Jewish in Denver 

Your family deserves a doc who is going to get a great care plan together
So either your local one can follow it you can do the long distance thing.

Chop and Denver would be a trip for you but Cincy is drivable
They have a Ronald McDonald house so lodging is cheaper or free as well as medical discounts at a large portion of the hotel and long term stays so you can cook in.
Guest services will give you free passes to the local things like zoos and museum to make it a mini vacation

You are in my thoughts and prayers


----------



## kimmidwife

FW
Happy you guys are finally getting some answers. So glad MLP is so knowledgable about all this. I agree with her to push to see that specialist Dr. Putnam. When you are dealing with something more on the rare side you definitly are better off going with a doctor who is experience in that area especially when dealing with a child.


----------



## Farmwife

Nurse is coming soon!


If I want this tube to stay in what is that special tape called? I thought it was called plaster?


----------



## Mylittlesunshine

Farmwife I hope everything goes well with the tube
When my dd had the NG tube they used 
Micropore tape it's a white tape or u can use plaster
But micropore tape we found better on the skin x


----------



## Johnnysmom

MLP, I am confused about the EOS and EGIDs.  Is the difference the eosinophils count?  Johnny's were elevated in his stomach, duodenum, terminal ileum, cecum, ascending colon, transverse colon and descending colon.  I thought this was normal with crohn's or does this show some sort of allergy?

Sorry I know you have already explained this but I am not getting it.


----------



## Farmwife

It's in! The tube is in. Poor Grace! Just doesn't understand! I'm off for the night! Hugs to all.:hug:


----------



## Mylittlesunshine

Aw poor grace .it will take a few days for her
To get used to it x
Thinking of u both x


----------



## QueenGothel

Hope she comes to terms with it quickly.  Rowan wouldn't talk with one in I hope that doesn't become an issue. Granted her tube was much larger than the normal tube.  Poor Grace.


----------



## poppets mum

Wishing you luck with the tube. It maybe overwhelming at first but keep reminding yourselves that this is the best possible decision.


----------



## Dexky

I hope it makes her feel so much better that she loves it!!


----------



## DustyKat

Phew! I can't believe how much I had missed in a couple days! :yfaint: 

I hope the feeds go wonderfully well Farmwife, bless little Grace...:heart: 

How is it going? 

Dusty. xxx


----------



## Sascot

Glad to hear the tube is in.  Hope it wasn't too traumatic!  A couple of days and she will probably not notice it any more!


----------



## izzi'smom

Thinking of you and Grace...hoping today is a good one. :ghug:


----------



## my little penguin

Hugs
Hope it helps


----------



## Johnnysmom

I bet little Grace will be a pro in no time at all.  ((((Hugs)))) momma.


----------



## Crohn's Mom

Hope she's feeling better today....
Tell her she's wearing that tube like its THE new fashion for 2013 princesses ! :hug:


----------



## Suzysu

bless her - hope it starts working its magic soon! sending lots of hugs xxxx


----------



## my little penguin

Johnnysmom- EOS are found typically when there is inflammation. due to an egid .
However they can also be present some times in Ibd patients.
I am not sure How they distinguish between those kids that have components of both diseases and those that have Ibd vs egid .
That is well beyond anything I read .
I do know of a few children dx with both and they are seen at the BIG hospitals .

Since cchmc is known for both and their pathologists routine check for Egids - I would think they would have flagged it if it was a concern.
However it truly does not hurt to ask since you have the resources right there kwim .


----------



## Johnnysmom

Thank you MLP.  

I was thinking that they would have noticed something was off when they reviewed his records.   The pathologists were from our old hospital but I know they went over the biopsies when we transferred. I also didn't find a satisfactory explanation concerning exactly how the two are distinguished.  It was the most remarkable thing found on his biopsy though.  And I read that EOS react quickly to steroids.  Johnny CRP and ESR were normal 6 days after starting Prednisone.  I remember our G.I. being shocked that he reacted so quickly.  

I will make sure to ask them at his next appointment.

Thank you again.  Hope things are settling for you.  Praying for good results on those fecal tests.


----------



## my little penguin

Get a copy of cchmc biopsy results.
Any images or biopsy slides that were sent when you transferred would have been re read and would have a report.
Just ask they printed out DS reports in 30 seconds .

Egid have food triggers so that would explain the weight issues .
One if the children with both actually sees two gi's one for egids and one for Ibd  at the same hospital .
Good luck johnny'smom


----------



## Farmwife

I   hope all goes well mlp.


my little penguin does EGID's have EIM's like Grace has?


----------



## Clash

FW, what did the doc say about the mild plasmacytosis found in Princess Grace's stomach? Does that infer that there is gastritis? I was just wondering, maybe MLP knows.


----------



## my little penguin

http://m.gut.bmj.com/content/27/10/1219.full.pdf

Paper on EC


----------



## my little penguin

> At 3 years of age, the patient had a recurrence of gastrointestinal symptoms, protein-losing enteropathy, and asthma. At this time, his absolute eosinophil count was 1,550, and the repeat jejunal biopsy was normal. However, a gastric antral biopsy showed an intense inflammatory infiltrate of the mucosa with a marked predominance of eosinophils, consistent with a diagnosis of eosinophilic gastroenteropathy


http://mobile.journals.lww.com/jpgn...ewer.aspx?year=1996&issue=07000&article=00014


----------



## Farmwife

I feel soooo stupid but my little peguin and Clash...what???????


----------



## Johnnysmom

Something that I was just thinking about FW...

When Johnny was having joint pain while under Dr. K's care, Dr. K said he felt it was not crohn's related because he SED and CRP were at that time normal.  He really didn't offer us any options for treating his knee pain.  When we went to Cincinnati children's we talked about Johnny's knee pain and they said it absolutely could be treated and they often need to be treated separately.   When I told him that other G.I. felt pain was not related to crohn's because that was in remission he just shook his head no.  So if you find they aren't addressing Grace's EIM's you might want to look at that second opinion.  

Just a thought.


----------



## Clash

FW, I don't know I just really caught up on this thread, didn't know you had posted those reports. In reading the reports it said mild plasmacytosis in the stomach(unless I completely misread, which is possible!!!!!) I just wondered what that meant, if it had to do with gastritis or inflammation??


----------



## my little penguin

Didn't see clash post .... 
FW 
Egid do involve leg pain in a lot of kids when they are flaring.


----------



## my little penguin

Second johnny'smom
DS had joint pain while his blood levels were normal.
Rheumo treats it - since we have found for him it is an indicator his crohn's is not under control.


----------



## my little penguin

> Plasmacytosis is the presence of large numbers of plasma cells in bone or other tissue where doctors would not normally expect to encounter them. This condition can be the result of disease or infection, or it might be a sign of a spreading malignancy. If a doctor identifies plasmacytosis in a patient, he or she might recommend follow-up testing to determine the cause. If necessary, the doctor can provide treatment to address the issue


From:
http://m.wisegeek.com/what-is-plasmacytosis.htm


----------



## my little penguin

> Conditions such as multiple myeloma and cutaneous B-cell lymphoma are also associated with plasmacytosis. In these cases, the patient might experience symptoms such as fatigue, anemia and swelling along with the high numbers of plasma cells. Medical evaluation can include imaging studies, analysis of tissue samples under a microscope and a careful patient interview. Treatment might include chemotherapy, radiation and other measures to get the malignancy under control.


From:
http://m.wisegeek.com/what-is-plasmacytosis.htm


----------



## my little penguin

> www.unboundmedicine.com/.../ ...The topic [Plasmacytoma of the stomach (author's transl)]. was found in Unbound MEDLINE along with ™ is ... On gastroscopy and biopsy, the diagnosis of superficial gastritis was made.


So I got nothing
.....


----------



## my little penguin

Ok so upon further reading it could be really bad. 
Or just fromh pylori or mild gastris ....
In other words ASK you doc
I haven't got a clue


----------



## Farmwife

my little penguin said:


> Didn't see clash post ....
> FW
> Egid do involve leg pain in a lot of kids when they are flaring.


Thanks mlp. That make me feel better, But NOT the cancer thing!:ywow:


Clash I can only say how embarrassed:ytongue: I am about not even seeing that. I've looked at the report so many time and never thought about it!


----------



## Clash

I tried to google and found basically what you did including one about mild plasmacytosis and gastritis. FW, just thought you might want to give it consideration before upping her EN feed, but not sure how one would really affect the other.


----------



## Farmwife

my little penguin said:


> OK so upon further reading it could be really bad.
> Or just fromh pylori or mild gastris ....
> In other words ASK you doc
> I haven't got a clue


I'll write more once I pick myself off the floor!


----------



## Clash

Sorry you guys are posting alot quicker than me. But yeah, I would check with the doc FW before upping EN. I know C had gastritis and it bothered him alot.


----------



## Farmwife

I already turned it down Clash. She's ill tonight. 
I'm close to hitting myself in the head for being so impatient.
 I just want her to eat and feel better. 
In 7 days she's down 6 lbs. She all most four and is now 31 lbs.
I'm off for the night. My bachelor of a brother just came for food and to do laundry.


----------



## my little penguin

FW - if it was a real issue I would assume your Gi would have her having more tests quickly as in last week......
So get off the floor - 
The Zantac she is taking would treat the gastris but since it was still present it my or may not have been enough...
See not a doc just a confused mom
I only know what my kid has had very well ...
Other stuff not so much 
No off the floor and back to work


----------



## my little penguin

Hugs ... Sorry about the ill feeling
I was worried about that - refeeding syndrome
You lose a lot of weight the body can't handle it all at once really fast 
Call the nurse in the am


----------



## Clash

FW I agree with MLP I think if it was serious the GI would have scheduled her for more testing right away, I just felt it must have to do with gastritis. Hope Grace feels better quickly.


----------



## Farmwife

It's all right guys.:wink: It's my fault for upping to quick. The fact is she's not handling it well at all and neither am I. It's just hard to watch the one you love suffer. You all know this.:hug:

The thing about the GI is......I want to be told every possibility out there so I can prepare. I know that's unrealistic but it's still a dream.

Johnnysmom:heart:
Well apparently he's changed a bit. Once the dx was made then he was concerned about her joint pain, big time. Next day got a call and she has a rheumy apt. on Feb 14th. Keep in mind their backed up till March. THANK YOU GI!!!!!:soledance:

:ywow:Have to go my brother is doing my dishes.
 Does that tell you how messy my house is. :awe:
:biggrinon't get me wrong I'm going to sneak of to bed!utahere:


----------



## Johnnysmom

Feb. 14th is a miracle!   There is only one rheumy that serves half the state.  They laughed at me when I tried to get Johnny on a cancelation list.  We never did end up seeing him.

I am going through Johnny's biopsy report too,  googling things and all that scary stuff comes up.  But I have to believe that these Dr.'s know what they are doing.  If they thought there was even a chance something really bad was going on with Grace I know they would react.  They might not know what it was but they would admit her and figure it out now.  That much I am very sure of.  So I am assuming that there is just a lot of this we just don't understand (not going to medical school and all) but I think it helps to have so many eyes looking over the report and asking questions.  

Hoping EN goes better tomorrow ((((Hugs)))))


----------



## xmdmom

I wouldn't get excited  or worried about the mild plasmacytosis.  Plasma cells are characteristically seen in chronic gastritis.


----------



## Farmwife

Johnnysmom said:


> Feb. 14th is a miracle!   There is only one rheumy that serves half the state.  They laughed at me when I tried to get Johnny on a cancellation list.  We never did end up seeing him.
> 
> QUOTE]
> 
> 
> 
> I don't mean to brag Johnnysmom but:tongue:............
> When they called and gave me the date the nurse also said we were on the cancellation list!:hug: Maybe it's because Grace looks cuter than Johnny siting on his lap.:lol2:
> 
> 
> 
> Grace had a bad night. Lots of abdomen pain.
> We have church today. That should keep her mind occupied.
> Have a good day one and all!:hug:


----------



## Sascot

That's a shame it was a bad night.  Hope she improves through the day.  All these lovely people doing all this googling and coming up with all the info - puts me to shame :confused2:.
Sending lots of hugs :hug:


----------



## Farmwife

my little penguin said:


> The top egid doc there would be DR Putnam .
> That is who you want




my little penguin
Which Doctor Putnam????? Their's three!:sign0085:


----------



## my little penguin

http://www.cincinnatichildrens.org/bio/p/philip-putnam/

There you go


----------



## Farmwife

Thanks MLP. I'm printing everything for the new GP. Boy if she didn't think I was research freak before, she will now.

Why oh why do I wait till the last minute for everything!


----------



## Johnnysmom

Farmwife said:


> Why oh why do I wait till the last minute for everything!


Um....because your busy cleaning stomach contents off your couch?!?  Go easy on yourself FW.  You are doing a great job.  :rosette2:


----------



## my little penguin

http://www.cincinnatichildrens.org/service/c/eosinophilic-disorders/default/

You may need this


----------



## Farmwife

Thanks I got that. Also I'm taking the two case studies.
 Also I'm taking the quick overview of EGID. 
She's not going to have time to read the case studies so I figured the overview would be more practical to sit and talk about.


----------



## Farmwife

Johnnysmom said:


> Um....because your busy cleaning stomach contents off your couch?!?  Go easy on yourself FW.  You are doing a great job.  :rosette2:



Oh, your sweet. :rosette2:When and if M and I come down, I'll have M get you a nice suite at a fancy hotel for us to enjoy!:thumleft:


----------



## Farmwife

Update:

Second visit with the new GP for Grace.

She feels that colitis is the right dx but is leaning on Crohn's from the biopsies.
She's awesome with her knowledge of vitamins and is going to test for all I asked for and even said if I forget one call and she'll order it.
She thinks the MRE can wait. Not happy but at least I got the labs ordered.
She wants to see Grace every 4-6 weeks. Labs if their normal (which they have been) every two months. Now if something should pop up on the labs closer together.

OK MLP I know your waiting for this.
She knew what the EOS were and started talking about a specialist at John Hopkins.
I tried to speak about Cinny but she was fixed on her guy. The conversation dropped soon after. I'll try later. So no go there for now.:voodoo:


The GP agreed the brace would help support the leg. She ordered a soft brace which Grace has to have fitted.

I'm off. 
Tomorrow will be filled with town trip and phone calls and maybe I'll clean the house. But I'm not sure on that!:tongue:


----------



## my little penguin

John Hopkins really ... For EOS 

Sorry but most kids from MD travel to cchmc with egid ...
Not hopkins which is great for alot of things 

Do you have to have a referral for insurance ????


----------



## Farmwife

MLP
When she pushed her guy (which a world renown nutrientist), I dropped the conversation.
I have no plan on going their, second will be at cchms. I just have to get her on board. Which I believe she will be when this settle and we can focus a bit more.
This appointment seemed a bit overwhelming for us and her. Lots to talk about so we weren't able to go in depth about anything.
In the coming conversations I will be saying what I want in the way of second opinions again.


----------



## kimmidwife

FW
Glad to hear the visit went well and the new GP is so supportive. How is Grace doing with the tube? Is she getting used to it?


----------



## Tesscorm

Gosh FW, just catching up here...  you really have had lots of ups and downs! :yfaint:

but, it sounds like the new GP is good to talk with and is responsive to your concerns! :thumright:

How is Grace doing with the tube, pains, etc.??


----------



## Johnnysmom

Dr.K did our referral to Cincinnati.  Would he be willing to do one for you?  It was technically a transfer of care but they said it was handled just like a second opinion.


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## Farmwife

They did it for Mott's and then found out about the insurance. I don't want to change Gi's at this point. I want the EOS "thing" looked at Cincinnati. However our GP felt it was all crohn's related. Keep in mind we still don't know if it's crohn's or UC. But I think she felt and rightfully so, because the TI has active ileitis (with eosinophilia) it's crohn's.
We'll see.


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## my little penguin

What has the Gi said???
If anything about the EOS ???
Or overall dx except generic colitis


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## Farmwife

I feel like it was a general colitis. He (GI) said that he feels that she's "coming into it". :shifty:

I told the new GP this but she said she feels it already crohn's. BUT she's NOT the GI.
I want more proof than just a feeling! 

Right now I'm going with the flow. :wink:I'm just thankful for EN.:heart: I just hope it's enough to help. I'll push when the time comes! Who knows it could be tomorrow!

Off to bed! I hope it's a restful night!


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## Farmwife

:voodoo:Grace has taken a turn.
BAD pains in her right side last night. About rushed her to the ER, but the pains stopped.
Stomach pains. Her neck pain is now two inches lower.

Call her GP secretary said she fax the GI her labs. I asked for the levels that are off but she was resistant on telling me. I begged and she did say...Low B12 and zinc levels, elevated LDH (AGAIN) and VERY LOW WBC counts. 

I told the GI nurse that I would like to give it the week-end. She agreed as long as the pains stays low.

I know and want to give EN more time to work. I just hope she can wait.

That LDH bothers me.:voodoo: That means tissue death. She's been having high levels off and on for a year. This just proves to me that I should be pushing for an MRE.


I'm off. Y'all have a good and safe week-end.


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## jmckinley

Catching up on things Farmwife. I am glad to hear that there's finally some action on the GP and GI's side of things and a possible DX (even though you were already pretty sure about it!). I am sorry that poor Grace is having so many ups and downs! She sure deserves a medal for all that she's endured.

I hope that she has a better weekend (so you don't have to go to the ER) and you get some answers about that bloodwork from the GI.

By the way, that photo is adorable!

Hugs to you and "Way to Go" for your persistence with these docs!

:medal1:


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## QueenGothel

With you momma!  Hang in there. :ghug:


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## Sascot

Sorry to hear about the bad turn!  It makes sense wanting to give the EN more time, wish it would hurry up and make the pains go away.  Hope the weekend is nice and she settles down so you don't have to phone in.


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## my little penguin

FW just a thought concerning the leg ... Did anyone ever have her evaluated by Neuro when she was done at Devos .???
Sudden leg issues usually needs a Neuro rule out ( including ms) add tissue death and well ....
Please talk to your Gi ask him for a Neuro referral..
When DS complained of numbness or tingling in his arms Neuro saw him within a few days even after peds had signed off on it.

Hope she is doing better


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## Suzysu

How is Grace today? any improvement? thinking of you guys xxxx


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## jmckinley

Checking in on Grace today. I hope she is feeling better!


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## upsetmom

Just checking to see how yous are going. I hope everything's ok.


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## Farmwife

Thanks everyone!:hug:

Update: Grace seems to be holding her own for now. 
Low-grade fevers, joint pains still bothering her and the occasional belly pains are building up.

 I've been in talks with her GP and GI nurse and it sounds like some imagining will be done soon. What it will be, I know not. I'll find out more tomorrow. 

It's already been suggested about adding the pred. by the GI nurse.
 I however want the imagining (hoping MRE) first so I can get the "big" picture of her body.
 I wont let them throw meds at my kid without giving a clear reason of why her body is acting this why to microscopic inflammation. :eek2:
That doesn't make sense, if it does to you then let me know in child-like language.:tongue:

Sorry I won't be around much. Tax season starting on the farm.:voodoo:
Son starting full time K and Grandparents that no longer drive but have busier lives than I do. Oh and let's not forget caring for a chronically ill child.

Hugs to all. I hope to check in soon. 
To all the new parents welcome aboard and welcome to my thread about a roller coaster I want off!:voodoo: 
Well at least we're all in the same car.:stinks::rof:


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## my little penguin

Sorry about the pain etc.....
Fwiw DS had microscopic inflammation 
We did en and he STILL needed pred x 5 months
Imaging was picture perfect too btw.
Not saying not to do the imaging 
Just that all the studies state en works best for kids with mild disease.
Which grace may or may not have.. 
En doesn't hurt and is worth the effort but more may be needed to help her.
Also it would help if they were sure what they are dealing with..  
Have they told you yet or is it still we are not sure


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## Farmwife

Thanks MLP. You truly are a treasure to this forum.:hug:

I told the GI nurse....we will stay on EN until we have more clear answers. 
I have a lot going on and it's nice to know she's getting all her nutritional needs meant.
Grace hasn't even asked for food. What does that tell you!

So your ds had ONLY microscopic inflammation?:eek2:


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## crohnsinct

And the plus side to the Prednisone is it is the protocol (or at least I think I remember reading that somewhere) for what Dr. Penguin suggesed this could be...so at least you won't be out in left field should this turn out to not be IBD at all.


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## my little penguin

His scope in sept 2011 was visually NORMAL.
So much so Gi had a script for meds for functional disorder all ready - we waited for biopsy results.
He had alot inflammation including marked inflammation with multiple granulomas in the TI.
He aslo had inflammation in the caecum, duodenum , stomach , esophagus - but it could only be seen in the biopsies so microscopic .
Ct only showed mild thickening of the TI . Which radiologist thought was not true thickening.
Hence why our gi wasn't completely sure and our 2nd opinion at Cincy
.

Egids are typically treated with EEN -
Only steriods if its EGE or EC ...


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## AZMOM

I'm sure you've read plenty. But found this so thought Id pass along. 

http://digestive.niddk.nih.gov/ddiseases/pubs/microcolitis/


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## crohnsinct

...so MLP would she have it all covered if she stays on EEN and adds the Prednisone?  I am obviously not a cheerleader for drugs but just sayin' don't hate on the Prednisone.  It could be a very helpful drug and has its time and place.


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## AZMOM

That's what I was thinking when I read the article. I'll defer to MLPs thoughts though.

J.


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## Crohn's Mom

So with you there cic ! I'm (we're) not a fan of prednisone either -
It's the drug we all love to hate - but when it's needed it does do wonders ! 

Hang in there FW and don't brush off pred just because you're scared of the "possible" side effects


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## my little penguin

Yep
Pred and EN would cover it all.
Another thing to remember -
Microscopic colitis or Ibd found in adults is different from finding it in a child.
The younger the child at dx the more likely the inflammatory pattern will change ( grow in severity )
Most kids go from inflammation to fistulas / strictures in the span of 10 years ( at least on the old drugs pred and 6-mp - no one know  what course biologics will do).
So if your are microscopic now odds are not in your favor to stay microscopic even with treatment.
Case in point DS second scope last June visually showed inflammation so...  
Expect changes ..... 

We love to hate pred here as well but ... It help heal DS so..


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## AZMOM

I understand the wanting to know why but like MLP said, if ya gotta have prednisone ya gotta have some prednisone - even with EN. 

We've been there done that not only with crohns but early in the arthritis days. 

J.


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## Suzysu

slightly unrelated question - but it seems that lots of people have problems in the terminal Ileium - On Freddy's scope it says that the TI was not visualised - at the time I thought that this was just the bit that they couldn't see on scopes but it seems like lots of people have had it looked at and there is a problem there - is it normal not to see it on the scope? Sorry to hijack the post!
Hows Grace doing today? xx


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## jmckinley

Suzy,
Yes, the TI can be seen on a colonoscopy. I think that's as far as they can go. Both of my son's scopes had photos and biopsies of that area and yes, inflammation there too.


Checking in on you FW! I know you need another couch DR, but I agree with the EN plus prednisone. The faster you get the inflammation under control, the better. We all hate prednisone!


(((HUGS)))


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## Tesscorm

Suzysu - just a guess on my part but if there was inflammation leading to the TI, perhaps the scope couldn't go beyond the inflammation??

FW - I hope Grace is feeling better!!!   How is she managing with the EN?


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## jmckinley

That's a good thought Tess.


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## Farmwife

Suzysu said:


> slightly unrelated question - but it seems that lots of people have problems in the terminal Ileium - On Freddy's scope it says that the TI was not visualised - at the time I thought that this was just the bit that they couldn't see on scopes but it seems like lots of people have had it looked at and there is a problem there - is it normal not to see it on the scope? Sorry to hijack the post!
> Hows Grace doing today? xx


Suzysu dear I'm going to hand that question over to Dusty or some one that is in the "know".:shifty: How's Freddy?:heart:

I'm not going to withhold pred from Grace. I might hate drugs in gereral:voodoo:.
But they do have their place. :kiss: I still hate it :voodoo::voodoo:and will stomps my feet like a kid:wink: but I'll do what's best for Grace.:heart:

I called the GI nurse and update her. I guess the nurse did also. She told them that Grace was/is more pale, increasing joint pains, eye pains, belly pains and lethargy starting to worsen again. I guess when a nurse tells them then they take it seriously.:voodoo: They never called back. :voodoo:I guess I'll be calling and nagging tomorrow.:voodoo: I feel the stabbie kind of mood today. 
Between Grace's pains causing sleepless night, tax season and my dear most beloved Grandpa in in ICU, I feel like a stabbie:voodoo::voodoo::voodoo:

Good night y'all.:kiss:


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## jmckinley

Wow Farmwife! I am so sorry things are piling up on you. I will certainly keep you in my prayers. I don't doubt for one second that you will take that rolling pin and straighten somebody out! I hope you get a call back tomorrow and Grace gets better soon. I hope you have a restful night!


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## kimmidwife

Wishing you guys a restful night and sending hugs!


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## Jmrogers4

Hoping you are sound asleep enjoying a peaceful night.  Haven't had a lot of time to post lately but know that you and princess Grace and the rest of your family are in my prayers.  Hope grandpa is okay.  We just moved my grandmother into a home on Friday, so I've been helping my mother and telling her not to feel guilty (grandma has lived with them and they have taken care of her for the last 8 years)


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## Suzysu

oh no, poor Grace - From a veterinary point of view I hate using pred and avoid it if I can - However it can give great relief and I think when youv'e tried a few other things and there are still inflammatory problems then you have no choice - and as I said it really can make a world of difference (plus it's not necessarily forever - she may just need a nudge in the right direction and a course of pred combined with the EN may help her no end).
I will be thinking of your Grandpa also at what must me a very difficult time for all of you.
Sending big hugs xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
PS - dont worry about my TI question! I had wanted to ask it a few days ago and just thought of it again yesterday - was a bit random and really not important!!!!


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## crohnsinct

Suzysu - not sure about the TI question but when our doc was going over results of scope he said and I quote, "I was  able to get to th TI which is good and there was no inflammation in what I could see of the TI". 

So from what he said it sounds like he doesn't always get a look at the TI.  But of course I am no expert. My daughter also had severe inflammation in her entire colon so that wouls also support Tess's theory.


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## Sascot

So sorry to hear Grace is getting worse.  It is horrible sitting round waiting for the phone to ring, hoping someone will help.  Hope they ring soon.  Hope your Grandpa is ok and gets out of ICU.


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## dannysmom

Suzysu said:


> slightly unrelated question - but it seems that lots of people have problems in the terminal Ileium - On Freddy's scope it says that the TI was not visualised - at the time I thought that this was just the bit that they couldn't see on scopes but it seems like lots of people have had it looked at and there is a problem there - is it normal not to see it on the scope? Sorry to hijack the post!
> Hows Grace doing today? xx


On Danny's first colonoscopy the TI was not visualized either. I asked the GI and he said sometimes it is just to hard to get to. His second colonoscopy was dnoe by a different GI, and since he really wanted to make sure the TI was accessed, he brought in a second GI in case he could not get to it ... but he did.  So ... I do not think it is terribly uncommon to NOT reach it. Danny's TI was normal on his second colonoscopy.


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## Farmwife

I was at the hospital all day with my Grandpa. He's doing better!:dance:
The social worker called to give my hubby an update on the special insurance for Grace.  The nice lady told my hubby, now that Grace has been dx with IBD and EOS she will get this insurance. WHAT?????? HELLO???????? WHAT???????? When did it go from Colitis to IBD and EOS????? :eek2:

_*I will be calling tomorrow*_. 

The GI nurse NEVER called again and Grace has some of her worst pains yet. She struggled to get four cartons of Splash in her tube today. She kept saying she was full and it hurt. I'm ready for the pred if it helps.:hug:


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## Tesscorm

Poor princess!!!   I'm so sorry she's still in pain - you must also be so frustrated, worried, tired! :ghug: :ghug:  :ghug:

Is it possible to change formulas?  Perhaps she's having problems with that particular formula??  I don't know if this is adviseable...  just a thought. If the pains don't improve, might be worth asking the doctor. Is the formula cold or at room temperature?  Cold formula may also cause tummy ache. Also, can you give her some while she's sleeping?  It might be easier for her to tolerate and you wouldn't have to worry about giving her so much during the day. But, if you do give it to her at night, I would try to elevate her a bit to reduce any reflux. 

Glad to hear your grandpas doing better!!


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## my little penguin

Second the cold in a tube - room temp for tubing
Cold for drinking .
She may need unflavored elecare or plain neocate
Alot of egid kids can not. Tolerate the eo28 splash btw.
99% can tolerate neocate or elecare .
Unless they have a lot more issues going on 
Hugs


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## Farmwife

Dx has been officially changed to..........................

IBD and Eosinophilic Disease


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## my little penguin

At work
Join www.kidswithfoodallergies.org
There is a forum for egid kids read a d read
Call Cincy today
Cced program is needed ASAP as well as ibd clinc
Read apfed 
Www.apfed.org


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## Momto2girls

I'm sorry FW -- I'm on kids with food allergies, too. Haven't visited in a long time but the help was invaluable when Gracie has her anaphylactic reaction and was diagnosed with her allergies. It is a really great group -- like here. I sure hope you can get Grace the help she needs quickly!


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## QueenGothel

Probably bc colitis isn't really a UC or Crohns diagnosis. It is just general IBD at this point glad that you got the insurance though.  Really glad for her too. :wink:


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## jmckinley

Hugs Farmwife! I am sorry, but I am glad you have a diagnosis. I hope you get to Cinci and get a great plan in place for Grace very soon!


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## DustyKat

Suzysu said:


> slightly unrelated question - but it seems that lots of people have problems in the terminal Ileium - On Freddy's scope it says that the TI was not visualised - at the time I thought that this was just the bit that they couldn't see on scopes but it seems like lots of people have had it looked at and there is a problem there - is it normal not to see it on the scope? Sorry to hijack the post!
> Hows Grace doing today? xx


@Suzysu: 

The Terminal Ileum is literally the end of the end of ileum. It is the area where the small bowel connects the large bowel via the ileocaecal valve and the caecum.

During a colonoscopy it is normal procedure to progress the scope through the ileocaecal valve and into the terminal ileum/ileum. It will only reach a small way into the ileum. 

The terminology they have used could mean one of two things - 

1. They did not progress through the ileocaecal valve for no other reason than they decided not to. 

or

2. They were unable to progress the scope through the valve due to inflammation. Sometimes a doctor will not push through inflammation as the tissue is very fragile when it swollen and inflamed and that increases the chances of perforation. 

Was there inflammation at the valve? 

Dusty. xxx


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## Suzysu

Sorry I've not been on much - I am not recieveing my email alerts!! - I thought it had gone a bit quiet!!

FW - How's your Grampa today?, and How's Grace - are they thinking of changing formula or maybe starting pred? I hope she gets some relief soon xxxx

Thanks so much everyone for answering my TI question - All of Freddy's scope was normal but it just said that the TI was not visualised and I just wondered if it were possible that he could only have inflammation at the TI or the middle part of intestine that they cant see - its just he passes so much mucus (just mucus no poo) sometimes I find it hard to believe that there isn't some inflammation somewhere - There was a few weeks between deciding to do the scopes and doing them and although he was certainly not 100% he was a bit better than he had been.


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## DustyKat

It is possible to have inflammation at the TI only.  

Both of my kids have ileitis so their disease is isolated to the ileum and so did not affect the valve or the large bowel. It is also possible to have disease isolated further up the GI tract as well. 

Dusty. xxx


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