# Farm Girl and EN



## Farmwife (Nov 3, 2012)

Our GP called at 7 at night and I informed him that Grace's BM's are getting worse and low grade fevers (99-101) and mucus in her stool and I saw blood mix with the water when I flushed it again. He said he has placed calls to the GI and the specialist in Florida but no call backs yet.:voodoo:

Then he asked my hubby and I if we would consider EN as a possibility.


My hubby said YES before I could open my mouth.

The doc is going to dx her with an Autoimmune Disease to see if our insurance will cover the shakes.:dance:

The doc will do weekly check-ups and weigh-ins. Plus labs half way through.
The Doc said he is STILL going to talk it over with the specialist from Florida.
Since she knows more about ME (or now it's going by MIBD) than him.

So Monday we meet with him and he'll let us know what EN shake to use.

Any advice about how to get Grace through this would be great?:kiss:


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## Tesscorm (Nov 3, 2012)

I so hope the EN can bring her (and you) some relief!!!

Just some some things to consider...

If you go with the shakes, this will help alleviate hunger during the day and can easily be taken with you if you go somewhere.  However, she will probably tire of them at some point and it may be a battle to make sure she gets the necessary quantity.

If you go with the NG tube, given her age, she may have a tough time having the tube inserted but, as far as I know, the tube can remain in place for the duration (I don't think daily removal would be an option given her age).  The tube does not 'get in the way' of normal day-to-day activities.  As Stephen ingested the full amount while sleeping, he did feel hunger as the day went on - could be tough with someone as young as Grace.  If you use a formula that is 'drinkable' (even if using the tube), I suppose she could drink a shake or two during the day to alleviate hunger.  And, apparently, the hunger may increase as her body heals.  Stephen found the sensation of the tube in his throat bothersome for the first couple of days but quickly became accustomed to it.  If you go with a tube, make sure it's a small tube!!  Stephen's size is 6-FR (I think most people on here use bigger tubes???).

Ask if she can have clear fluids with the formula.  Stephen was allowed broth, clear/no fibre juices (the dietitien said the sugary stuff you would normally NEVER give your kids - Tang, etc.), clear pop (no coke, pepsi, etc.), jello, popsicles, hard clear candies (like lifesavers) and gummy bears.  Be careful of all the sugar - you don't want to end up with cavities, etc.!  The broth was a huge help for Stephen...  it was a bit like having 'real' food...  (I also changed up the flavour by warming up the broth with spices like rosemary, basil, etc. and then straining.)

Stephen's formula is Tolerex (Nestle).  He had diarrhea (but no real urgency) for the entire six weeks (but, apparently this is normal for some...  but have read of others who haven't had this reaction).

Hope this helps a bit...


And I soooooo hope the EN can help Grace!!!  :ghug:


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## poppets mum (Nov 3, 2012)

Without an Ng tube the shakes are quite hard to do. Amy at first tried doing them over night but she had many problems with too much formula going in making her vomit and tube coming out again or bedwetting, and when sheets have to be changed 3 times a night or more it can be tiring for everyone. We eventually settled into a routine of daytime feeds with her telling me if formula was going in too quickly and keeping tube in constantly. I think they give you a month before they have to be changed. We put little nail stickers on Tegaderm tape  on her face around and on tube to make her feel better about the whole 
thing.   Good luck.


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## Jmrogers4 (Nov 3, 2012)

We have not had to do EN but I hope it will make Grace feel better.


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## Sascot (Nov 3, 2012)

That's really fab!  If she doesn't like the shakes the NG tube is no problem.  Andrew kept his in for the whole 8 weeks and I just used the bolus to feed him (I never had a pump to deal with) at his regular meal and snack times.  
I remember worrying that the plaster on his face would leave a mark after 8 weeks on his cheek, but although there was a small patch of irritated skin, it went away after a couple of weeks.
It wasn't nice getting the tube in but only took seconds and after a few days he didn't feel it anymore.  I believe the Modulen is supposed to be anti-inflammatory as well as have all the necessary nutrition, so that would be a good choice if you are given one.
At least they are finally trying something - hope they get it sorted soon so she can start asap!


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## DustyKat (Nov 3, 2012)

We only had a week of EN so I am of no help Farmwife but lordy, lordy, lordy I so hope that beautiful little Grace is able to tolerate and them and they soon have her feeling fab!  

Sending loads of love and luck across the pond! :heart: 

Dusty. xxx


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## Farmwife (Nov 3, 2012)

Thanks everyone. I was hoping to avoid the tube but now that I think of it, she is sooooo picky when it comes to eating. Defiantly something to talk to the Doc about.

I trying to come up with a back up plan if insurance won't cover EN. 
Will Boost or Ensure or something of that nature work for 6 weeks of EN?

To tell you the truth my Doc and Hubby are both hoping with will "heal" her completely and the ongoing roller coaster will stop. I hope their right.  I know the future will tell but right now I'm pretty happy just to be doing SOMETHING to help.:heart:


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## upsetmom (Nov 3, 2012)

Farmwife said:


> To tell you the truth my Doc and Hubby are both hoping with will "heal" her completely and the ongoing roller coaster will stop. I hope their right.


I hope they're right too....:ghug:


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## DustyKat (Nov 3, 2012)

> To tell you the truth my Doc and Hubby are both hoping with will "heal" her completely and the ongoing roller coaster will stop. I hope their right.  I know the future will tell but right now I'm pretty happy just to be doing SOMETHING to help.


Amen to all that Farmwife! :heart::heart::heart:

Dusty. :hug:


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## Catherine (Nov 3, 2012)

I think we are all hoping their right.

Not that have any experience all with this treatment.  I think the tube would be easier for little Grace.


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## Crohn's Mom (Nov 3, 2012)

Here's to healing ! :beerchug:

Little farmgirl needs a break ! 
(and answers !)

:hug::hug:

ps: I think the NG tube would be much easier in the long term for her


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## my little penguin (Nov 3, 2012)

:soledance: Glad they are helping.

Peptamen jr. is the closest thing to "modlen" in the US. Nestle makes both but does not sell modlen here,
Peptamen is semi-elemental- lactose free but does contains whey.


most studies state that polymeric ( boost ensure etc..) have the same rate of remission as elemental.

However it depends on how much damage there is and where.
COlonic damage does not respond as well as small bowel. It still works but...

Pepatmen jr comes in three flavors and is drinkable. Again your durable medical supply company usually only carries one flavor vanilla
and since they are the ones your insurance is usually willing to pay you have to go with it.

For her age  I would ask for samples and see which one she was willing to drink.
Nestle has a version peptamen.
abbott has peptide
Nutrica has neocate - E028 splash.
E028 splash comes in juice boxes in grape, pineapple and orange flavor so very do able this is an amino acid based formula ( easiest pre digested)
Neocate Junior is formula for those over one.
Comes in tropical choc, vanilla and unflavored.
Elecare  by aboot is vanilla and unflavored.

Neocate junior and elecare do not taste as good iIMO.

Samples will be your friend.

Ask the doc how many oz they want her to drink a day .
DS needed 7 shakes  so about 56 oz or 1750 cal a day.

Be careful about higher concentrated formula 1.5 cal vs 1 cal.
it can cause stomach issues.
find out about pure sugar.
you have holidays to think about and at age 4 she will not understand - no foods.
pure sugar gives you plain cotton candy and  pure sugar "cookies" at christmas.
cotton candy can be made into cupcakes or real cakes.
dum dum lollipos can typically be used to flavor the cotton candy if needed.
shredded ice for her to chew is important to maintain oral skills.
there are also "Chew" tubes.
If she doesn't drink enough afte a few days (set a time limit with doc) then consider the ng tube.
I have more than a few links on tubey 101 pumps etc... for little ones such as backpacks, carts to carry them in etc... let me know if you need them.
different feed rates can make all the difference.

most leave a tube in- get the kiddo to drink as much as they are willing during the day and tube the rest at night - less battle of wills.

here are the links to the formula companies.
https://www.neocate.com/shop/c-6-nutricia-category.aspx

http://www.nestlenutritionstore.com...on?rank=6&v1=rank&asc=1&catpath=pediatric.2.2

http://www.abbottstore.com/child-nutrition/pediasure+reg-peptide/icat/pediasurepeptide/



http://www.abbottstore.com/child-nu...ld/&bklist=icat,4,shop,childnutr,elecarechild


ideas for little ones -who are no foods - toddlers
has tubey pictures, ng tubes jg tubes etc...
http://community.kidswithfoodallergies.org/displayForum/forum/elemental_diet


feeding tubes 101

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

good luck:medal1:


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## kimmidwife (Nov 3, 2012)

Hi Farmwife,
Had a crazy week and haven't been on the computer so I am just catching up.good news about the EN. Caitlyn used the pediasure peptide. It came in strawberry and vanilla. She liked the strawberry better.i think they also make chocolate but the place we got it from did not carry it. I am sooo praying this works for Grace. That poor baby has been through so much! I agree with the others to try the tube as it is hard to drink it all. Keeping my fingers triple crossed that it works for her!


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## Malgrave (Nov 4, 2012)

My 5 year old started the Neocate Advance with the NG tube 3 weeks ago. After 2 days he started to vomit but apparently he was having a gastro virus. Due to the vomiting the solution was changed to Aptamil Pregomin and he tolerated it well. Now we will change to Neocate Junior. Neocate is purely amino acid based.

My son has gained maybe half a kilo by now compared to the starting point (he lost almost one kilo in the beginning due to vomiting...).

In our case the same tube is on all the time and it took 2 days for him to get used to it. We use plasters on his nose and cheek, since he really hates if the tube moves, even a bit. We have a pump which helps a lot.

So in all we are quite happy with this experiment. He doesn't complain any stomach pain anymore and there has been no rectal bleeding in 5 days (previously he was bleeding every day). *The only thing I am a bit worried is that the the inner layer of the tube is getting "dirty", there seems to be some black stuff inside. Does anybody know if this is normal?*


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## Farmwife (Nov 4, 2012)

That's a great question Malgrave! I'm not sure what would cause the black spot.
I'll tag, Tesscorm , Sascot , DustyKat or MLP on this one.:hug:


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## Malgrave (Nov 4, 2012)

Thanks a lot Farmwife!

In fact the whole tube is full of these black spots. It is so strange since the solution is running almost all the time (i.e. there is no liquid "standing" inside for a long time so that it would get decayed).

He will have exclusive EN for 7 weeks and we were told that the same tube can be used for the whole period, but still I am a bit worried...


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## Farmwife (Nov 4, 2012)

Malgrave,
I know on the farm with all the plastic tubbing we have in the milking barn that if black spots showed up we know it's mold and have to clean it right away.
Can you call and ask some one? Doctor or manufacture?


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## my little penguin (Nov 4, 2012)

Was the tube cleaned or changed with the vomiting?
Do you flush the tube regularly ?
I would definitely call now
I know the outside has black marks to show placement.
I put up a flag on another site where kids are routinely no foods .
Here is the link:

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


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## my little penguin (Nov 4, 2012)

I ran it by the Tubey moms.
Their ng tubes were changed every two weeks so no time to get black but 
Other peg tubes have gotten black.
I would still check with your Gi Monday .


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## Tesscorm (Nov 4, 2012)

No advice...  Stephen's NG tube is not transparent so I've never seen any black spots.  But, I would check with the GI too!


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## Malgrave (Nov 4, 2012)

Thank you very very much for you prompt replies!
I will contact his GI first thing in the morning and we have an appointment tomorrow with our family doctor anyway, so I will ask her as well!

I will let you know when I know more.


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## my little penguin (Nov 4, 2012)

One mom said it might be the stomach acid.
Glad you are checking with your doc


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## Twiggy930 (Nov 4, 2012)

Farmwife - good luck with the EN.  I hope it brings you and your daughter some much deserved relief!  My son is a picky eater and I don't think he could have done the EN without the tube.  Once in they get used to it really quick.  Like Tess we used a 6Fr size which is tiny.  We used Modulen (at my request) but most kids at our hospital use Ensure or Boost.  I definitely think the chocolate Ensure is the most palatable.


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## Sascot (Nov 4, 2012)

Malgrave - my son's tube never seemed to have any black spots inside.  We had to flush it with a syringe full of cooled boiled water after every "meal" and we never had any issues.


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## DustyKat (Nov 5, 2012)

I have not seen any issues with build up in an NG tube but this is a hospital setting and the tubes are changed every at least every 2 weeks. 

The tube is flushed after ever every feed, are you doing this? 

Dusty. xxx


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## Mumof4 (Nov 5, 2012)

Farm wife my Matthew was on modulen  and he managed it without the need for a tube.  The things which helped him where to drink it through a straw or better still from a sports bottle so he could not smell it.  We also flavoured it, I am not sure if the one you will be using comes already flavoured but if not we were told to use crusha milk shake syrup or nestle.  Matt only liked the banana flavour nestle so had that flavour the entire time!  We noticed a vast improvement within two to three weeks with much improved energy levels even earlier than that.  He grew and put weight on and his symptoms stopped completely by the end of the course.  He was on it the first time for twelve weeks I think and then once more for eight weeks last April.  He has actually chosen to supplement his food with two shakes a day at the minute for a month to see if he will grow (his friends are all getting their growth spurts and he is worried about being left behind).  I don't know if it will work for that but it is not going to do him any harm!  I really hope it helps your little girl get some relief from her symptoms.


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## Farmwife (Nov 5, 2012)

Thanks Mumof4:thumleft:

I forgot the straw idea. I could get those crazy straws or a princess straw. She would love it!
I'm still hoping she can drink them but I want to be prepared if she can't.:yfaint:


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## Farmwife (Nov 5, 2012)

Paging Malgrave ,

Did you ever get an answer to the black stops?


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## Malgrave (Nov 5, 2012)

Yes, his GI's first reaction was that it could be blood and asked if my son has been complaining stomach pain etc (he has not). He asked me to suck some liquid out and see if there were some stained fluid coming out.  I did it and the result was totally white fluid with no traces or blood. Then I injected 30 ml of water, waited half an hour and sucked again 10 ml. The result was dirty looking water with black stuff, no blood. After that the tube looked cleaner already but still of course some black areas here and there...

So personally I think now that it is some sort of residue from the nutrition solution or the medication that we give via the tube. I must admit that we flush the tube with water only when we give him his medication in the morning :redface:
We have not even realised to do that more often, since the nutrition solution is normally running all the time (with only short breaks). Maybe we should indeed have flushed it more...

Anyway, now I am waiting more instructions from our GI (we are communicating with emails).

I'll keep you informed!


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## Farmwife (Nov 5, 2012)

Thanks a bunch.

Don't you love it when you realize after the fact it should have been done.:ybatty:
Never mind you think a professional should have said something!:ymad:


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## Malgrave (Nov 5, 2012)

Indeed!!!

We spent 3 weeks in the hospital with the tube and it was never flushed by the nurses either (except with the medication of course) so no wonder I didn't realize to do it at home! But now I see how essential it must be...

Although I am already quite a professional in stoma care, I never thought that some day the same would apply for EN as well


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## Farmwife (Nov 5, 2012)

Boost Plus is the EN our doc wants her on!

He said she needs about 1200-1300 calories per day.
1 Shake is 350 calories. She'll need 4 shakes a day.
NO to sugar or anything else other than water.
He said she needs to be FREE of all the sugar possible.
He's NOT happy with the amount of sugar that's already in Boost.

He's concerned with the blood in the stool  and ....
I had to CARRY Grace out of the store AGAIN because her left leg bothered her too much. :thumbdown: 
He said he's going to try AGAIN to call the specialist in Florida.

I sure hope this EN works. :shifty-t:
My twin is trying to find me the cheapest price to get a couple cases of Boost Plus.
So tomorrow afternoon is the start of what I call operation 
"Keep Grace occupied so she doesn't feel hungry".:lol2:

I'm tired all ready!:yfaint:


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## Mom2oneboy (Nov 5, 2012)

Good luck!  I hate to hear that Grace is still not doing well.  I hope EN helps her!


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## my little penguin (Nov 5, 2012)

http://www.nestlenutritionstore.com...nk?rank=1&v1=rank&asc=1&catpath=pediatric.2.1

20.00 for 16 boxes of regular kids essentials so she would have to drink 5 a day.
10% discount 

3 days worth so
50.00 per week


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## my little penguin (Nov 5, 2012)

http://www.nestlenutritionstore.com...nk?rank=2&v1=rank&asc=1&catpath=pediatric.2.1

70.00 per case ( 27) =6 days

So more per week and harder on her system plus with the plus we were told we would really have to watch water intake since the formula is more concentrated so find out the exact amount she is required to drink of water per day


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## Clash (Nov 5, 2012)

FWIW, our GI when going over EN mentioned being careful with young kids on Boost Plus, something about too much protein. Sorry, I don't remember the specifics since it didn't apply to C.

I hope the EN has her feeling better quickly.


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## my little penguin (Nov 5, 2012)

Yeah that you need the kids essential version of plus.
Since she is under 13.


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## Jmrogers4 (Nov 5, 2012)

Jack tried the kids essential Boost plus, he said it was like drinking pudding which might be a good thing with Grace she gets to have pudding for breakfast, lunch and dinner.  We all tasted it and it is pretty thick but the taste wasn't too bad, he wouldn't drink them because of the texture/thickness.  I think a pretty princess straw would be great, like getting a milkshake.
Hope she starts feeling better soon.


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## Tesscorm (Nov 5, 2012)

I hope the EN helps her!!!!  And, yes, distraction is BIG!!  Even at Stephen's age, it's what helped him when he'd get hungry in the evening (before his feeding started).


Jacqui - great new pics!!  He's such a good looking boy! (Obviously takes after his mom!)


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## Farmwife (Nov 5, 2012)

my little penguin said:


> Yeah that you need the kids essential version of plus.
> Since she is under 13.


:ybatty:
????????????????????????????????????????????????

MLP,
Can I buy this from a store? 
We NEED to start this sooooooon!!!!!!:voodoo:


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## my little penguin (Nov 5, 2012)

You can get regular kids boost essential from the grocery store - more pricey that way about $6 -7 for 4 . She would need to drink 5 of those .
The 1.5 version which is kids boost essential plus ( link) above you can get from a durable medical supply place with next day delivery but they increase the price and add infusion fees . That method is only cheaper if your insurance will cover x %.
Buying direct from nestle store - shipping is free and they have three versions.
Hospital grade ( juice box style) kids boost essentials ( 1.0) or kids boost essential plus ( 1.5). Or kids boost esstential retail grade( still 1.0 and same as hospital grade)
The retail tends to be a tiny bit cheaper from nestle since they tend to run it more on sale than the official hospital version. The hospital version 1.0 or 1.5 ( plus) are both sent in large quantities to Dme or hospitals for use.
DS has used both retail and hospital version interchangeable before he was dx last sept.
I talked the company they are the same only the box is different.
Just remember she will need 5 boxes of regular minimum or 4 boxes plus x% of water with plus - your doc needs to tell you that.
Before I would buy a whole case - I would go to Walmart or target etc... And pick up a 4 pack for the am if regular and make sure she will drink it.


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## Twiggy930 (Nov 5, 2012)

I would recommend drinking it well chilled and through a wide straw, the ones from McDonalds are good.  If she is getting enough calories she shouldn't actually get hungry but the urge to chew food and have a meal will still be there.

Some kind of reward system also works well.

Good luck!


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## kimmidwife (Nov 5, 2012)

Good luck!


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## DustyKat (Nov 6, 2012)

Not wanting to throw a spanner in the works, just thinking out loud...

Since EN can have the potential to heal the mucosa I would be concerned about not having a diagnosis prior to commencement. Ugh, I don't want Grace to suffer one second longer than she has to but I also don't want the waters muddied any further if they are going to continue to investigate. If only they would do a bloody scope! 

Dusty. xxx


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## Farmwife (Nov 6, 2012)

DustyKat said:


> .
> 
> Since EN can have the potential to heal the mucosa I would be concerned about not having a diagnosis prior to commencement.
> 
> Dusty. xxx


 DustyKat

Well my Aussie friend, now you knew my first thoughts after it was mentioned!:yfaint:

But I quickly relieved that my hubby and doctor were actually hopefully for a change. 
I decided that what will come might come. Right now my hubby is so happy to think this is the answer. He can be reassured that if this (EN) fails to heal her, at least we tried. So their's your answer! :rosette2:


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## Farmwife (Nov 6, 2012)

Also MLP,:rosette2: my doc brought up the water intake and also ice chips. He said a mother use to add food coloring to her ice so the kid would feel like maybe it's special treat. Love it!!!!:thumleft:
Even through he said no to sugar, we still will do something for Thanksgiving. Also Sunday night is always a special treat night so I think a few organic gummy bears will be fine!:thumleft:


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## Tesscorm (Nov 6, 2012)

Maybe ask about some decaf flavoured tea...  apple cinnamon, etc.  After a certain point, she will want something 'different'   I'm hoping this brings her some relief!! :ghug: :ghug:


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## my little penguin (Nov 6, 2012)

Please do not add any food even gummies- it has to be very strict or it will not work.
Even thanksgiving no food.
More later on why


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## crohnsinct (Nov 6, 2012)

I'm back on the grid!!!!!  Not allowed out of the area yet (wonder if that has to do with the storm or just me in general). Also internet is sloooooooow.  

Glad to hear you are trying something with Grace even if it will muddy the waters.  This sitting around watching her suffer just has to stop!  

Boost is what O used but she used the regular old Boost and was also allowed to use Ensure.  I agree with cold and large McDonalds straws!!!  THere are enough different flavors also so it helps with the boredom although I am not sure about all this "essentials" stuff.  If you could go regular and add another shake or two the stores are ALWAYS having sales.  Boost and Ensure are in a huge marketing war and the two of them are often on sale at CVS, Walgreens, Rite Aid etc.  I also usually have a ton of coupons for them only someone recently wiped me out.  

Our doc was super strict o food an beverages saying water only.  But to help O with the chewing issue he O.K.'d 1 piece of sugarless gum a day.  Maybe your doc will O.K that?  

In the end he did mention that there is a lot of research coming out that perhaps you don't have to be so strict but that the most he would approve was a cup of plain pasta and 2-3 ounces of boiled chicken a day. Boring but after 6 weeks exclusive that was a gourmet meal for O. 

The only other thing I will add is that if you allow little cheats it might wet the appetite for more so maybe not worth it. 

Oh yeah and if you are getting it covered by insurance and getting case shipments I agree with MLP...go to the store and get a 4 pack of all the flavors and have her try them first. 

Good luck!  

What is the status of scopes?


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## crohnsinct (Nov 6, 2012)

Ugh!  Rethinking the muddy the waters thing and as much as I hate to admit it Dusty has a point and it isn't just at the top of her hat (admit it...you missed me).  

Our hospital just had an IBD symposium and while the doc said EN is great and works and all he stressed that it is used to get the kids into remission but not a maintenance strategy.  He said think of it like prednisone...used to get the kids into remission while waiting for the maintenane meds to kick in. 

I am afraid that without knowing what caused this all to begin with when Grace comes off EN she will be better for a time and thten symptoms may resurface 

But I still totally understand and support getting her some relief NOW!


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## Sascot (Nov 6, 2012)

Hope they taste ok so that she can drink them!  Good luck, hope it works well.


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## Farmwife (Nov 6, 2012)

Glad your back crohnsinct!

Went to walmart with 3 coupons for 3 dollars off of Boost.
I bought the 2 flavors they had. Choc and vanilla.

My doc doesn't want Grace on anything but Boost and water!

I guess I'm surprised that I'm nerves starting this. I just want some relief for her and us.

I  also hope this might work and heal her up but no matter what........we can say we tried! It might make the finally outcome a little easier to take. Does that make sense???
 I STILL believe in miracles! My Grace was born deaf and a hole in the heart. Two weeks later the nurses and DOCTORS were amazed that it a went away. They couldn't explain how it happened but I sure could. PRAYER. I'll stick by that statement to the day I die! PRAISE GOD!:rosette2:


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## Tesscorm (Nov 6, 2012)

Wow, amazing that she has come through so much!!!  Truly an amazing little girl!

I agree that using EN now _may _muddy the waters BUT she's had so much pain lately, it absolutely has to be taking a toll on her!  If it can bring some relief now and give her some nutritional strength, let her have that relief.  If she does respond to EN and there is a definite improvement, that, in itself, may help direct more testing. 

Crohnsinct - so glad you're back!!!  I hope you didn't find too much devastation at your home/neighbourhood!!  :ghug:


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## Robs a (Nov 6, 2012)

Just to add my 5 cents worth here.  My son is on his 3rd week of EN, taking Modulen orally.  Both nutritionist and GI are adamant that besides the shake, he is only to drink water.  a piece or two of sugarfree gum is allowed!  Crohnsint you mentioned a symposium you attended regarding EN as a maintenance therapy.... Doe your son not defy this theory, has EN not been his maintenance therapy for some years.  I read a very interesting article published by The Cochrane Collaboration  www.thecolchranelibrary.com on EN for maintenance of remission in Crohn's.  The article was published in their Issue 4, 2009 which might make the content outdated.  Interesting nonetheless.  Good Luck Farmwife, sending positive thoughts to Grace!


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## crohnsinct (Nov 6, 2012)

Miracles?!  Yes indeed!  I know you know O's story from when she was 4.  If they were right you all would have never met us!  Now stop that!  I know what you are all thinking.  

O didn't mind the Boost.  She rather liked the chocolate.  The other thing I wanted to say was it is amazing how they will stick with the EN when they see it makes them feel better.  As excited as O was to eat again she was a little hesitant. 

Dang!  I am going to go look again to see if I have any more Boost coupons.  Can she drink the clear drinks? doc said they were the same and to mix things up O could have one of those a day.  We never got around to trying them but I do have a lot of Q's for those.  

I also have two cases of the boxes (like little juice boxes) of Boost vanilla that expires in January.  They are allowing us out of disaster zone to go vote so maybe I could swing by the post office and get an estimate on how much it would cost to ship to you.  Right after I swing by the liquor store...priorities!


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## Farmwife (Nov 6, 2012)

*crohnsinct hold off on sending anything for Boost.* Grace had her first one for lunch and is now in bad stomach pains.:thumbdown: I tell ya I can't take this.:sign0085: I guess I'll see by tonight if she has more pains after she finishes 2 more drinks by bedtime.:yfaint:


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## Crohn's Mom (Nov 6, 2012)

Oh goodness Farmwife 

I hope it's just a "fluke" and it's just going to take a day or two to get the solids out of her and then the EN won't give her pain 

:hug::hug::hug:


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## Tesscorm (Nov 6, 2012)

Robs a - I think you're thinking of my son...  exclusive EN was used to induce remission and supplemental EN has been his maintenance treatment ever since.  But, from what I've learned, Crohnsinct is right...  EN is not as successful as meds to maintain remission long term.  As my son has virtually no symptoms (only minor glitches irregularly), I believe he would be considered to be in clinical remission, however, his blood work does continue to show some raised CRP and ESR rates and MREs do show some inflammation.  So, we will be adding meds in the near future.


Crohnsinct - Umm, helllloooo - I don't know O's story!!!  I like miracles!!!  Why aren't you sharing!?!?    And, OMG, don't you start looting the liquor stores!   We all now know what you look like - we don't want to see some crazed woman running around with a buggy full of liquor, trying to hide behind a bunch of white balloons on the 11pm news!


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## Clash (Nov 6, 2012)

Or better yet....a woman riding around in a convertable covered with white balloons and wine bottles all the while singing...Splish splash I was taking a bath...

Glad to see you checking in Crohnsinct! Been sending thoughts and prayers your way.

Farmwife, haven't I seen you posting that Grace has been following the clean eating diet. If you have been cutting out copious amounts of sugars then it could just be that Boost is way too sugary for her clean system. I know when C goes off track and has something extra surgary he will get a tummy ache but says it doesn't feel Crohnsie like.


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## my little penguin (Nov 6, 2012)

Also realize she had pain before the en .
It really takes about 10 days to two weeks to see any difference.
The gut takes about 6 weeks to heal.
The difference between regular boost adult version and kids essentials is mainly the protein.
Little kids under 13 can not tolerate the protein at that high of a level.
It can cause issues with the kidneys .

I can tell you - be prepared for trash can diving.
Hide it.
Tears when you eat.
Thanksgiving pull out a new foam craft or doll etc...during dinner.
Sonic sells crushed ice plain which a lot of no food kids adore.
Make Sunday special craft night or game night
Steer your activities away from a food focus for the next nine weeks.
Have a scavenger hunt 
Bed bath beyond sells the milkshake straws 
But they don't bend
Do not freeze or cook the formula unless it is an extra for they day ( not part of her. Calories) then you could have slushy or Popsicle boost.
They bad thing about doing it before a scope is once you stop
The disease will come back but there may not be as much endoscopic evidence so she would still have to suffer longer to get to the bottom of it.
That was one reason why we waited for DS.
Also EEN treats a multitude of Gi diseases  which some require EEN basically for life until food trials are slowly passed via scope.


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## Suzysu (Nov 6, 2012)

I hope the EN gives her a break - and maybe even sorts everything out full stop!! xxxx


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## Farmwife (Nov 6, 2012)

Thanks everyone. The second shake went well. I had her drink slowly. Which for  three year old is hard!:smile:

Suzysu how's your boy?:hug:


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## crohnsinct (Nov 6, 2012)

Well I wasn't going to tell you all lest you crash MY party but there are lots of National Guardsmen, Firefighters and Police in the area gaurding from looters, checking for gas leaks etc...all here to keep little ole me safe....or are they here to keep the others safe from me? :shifty-t: The neighborhood is planning a nice home cooked meal for these guys...really they are here round the clock and have done soooo much a nice home cooked meal is the least we could do.  I have gas so I can cook...or can I? 

Rob:  well actually the way my doc explains it...EN is very good at achieving remission and it is "possible" (read possible not likely) to stay in remission for a long while.  If you are lucky and stay in remision for a nice long while say 6 months and then start experiencing symptoms then you hop back on EN for the 6-12 weeks and then off and see how long remission lasts. As long as the remission period is long enough yes EN can be your sole therapy but it can not be "maintenance" as you have to satrt  eating sometime.   Unfortunately, in his experience with kids (stressing kids as he said adults are very different) the kids do not stay in remission very long...say maybe 3 months and symptoms return and it is another 6-12 weeks of EN and at that point it isn't worth hopping on and off because children need to eat.   Our daughter is on Remicade and was still experiencing symptoms, rather than add another drug we added EN and right now the plan is to hit any future flares with EN rather than prednisone.  She has been 3 month symptom free so far...spit spit, turn around three times, salt over the shoulder, give me those crows!  

All: It was my intention to brain dump everything I learned at the symposium but then my friend Sandy came to visit.  So you will just have to wait as the topics come up and I spew forth my pearly words as they are called for.  

Farmwife: I agree with MLP!  Give it a day or two...maybe it is actually the formula working?  The sugar content is high though so Clash also has a point but hang in there and try to gove it a chance.  My cases will be here if you need them...O has abandoned them.  Haha actually while everyone was worried about gettig shelf stable food etc. our family wasn't worried in the least...4 cases of Boost and 6 of Ensure at the ready...barforama!


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## Suzysu (Nov 6, 2012)

:ghug::ghug::ghug::ghug:
sending you many hugs and much strength xxxx


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## crohnsinct (Nov 7, 2012)

How is the princess todday?


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## Sascot (Nov 7, 2012)

Hope Grace is coping with the shakes so far!


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## Farmwife (Nov 7, 2012)

Thanks crohnsinct and Sascot and everyone

It's still exciting that mom is giving her shakes. She's hungry but not asking to much for food.

*I think I'll use this thread for ideas on EN for LITTLE kids*.
 Some great ideas have already been give but please if you have more write them down here!

We started the reward system of stickers. My dear mother-in-law got Grace a HUGE book of girl stickers. Each page has a theme. Last night in a special note book she go to pick out a scene and decorated it. It was call a tea party with dolls, tea cups flower and cupcakes. The sticker are beautiful. It looked great.


The only thing I'm seeing is she's tired, very tired. Can EN cause that? Or is it something else? Her stool yesterday was hard and not very much. Keep in mind it was three days no BM's before that movement. I'm pushing water like crazy. She willing drink it. 
So we'll see what the future holds yet again.


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## crohnsinct (Nov 7, 2012)

Wow!  Enjoy it while their young and stickers do the trick cuz the EN bribes only get more expensive.  O got weekly mani pedi's...couple of new tops...you get the idea.  

So no more stomach aches?  I never got to the post office to get an estimate on shipping those cases?  Do you need me to brave the snow and noreaster storm today to check on that?


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## crohnsinct (Nov 7, 2012)

Hey just checked my coupon database and oost Kids Essentials is on sale at Walmart.  4 pack for $3.48 (30% off).  CVS has the regular 6 pack for $6.99 (19% off). 

Oh yeah and sometimes we would zip O's shakes in the blender...no addition of ice or anything like that...just zip it up to make it frothy and look more like a treat.


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## Tesscorm (Nov 7, 2012)

Poor Stephen...  Trying to remember... but I don't remember bribing him!   Although I do remember telling my daughter to 'let it go, he can't eat for six weeks!'...  so we must have let him get away with at least a couple of things!  :lol:

Another 'reward system' I had when my kids were young was a Treasure Chest.  I filled it with small, inexpensive things and they could choose whatever they wanted when they got the reward.  Warning!, it eventually backfires as they take the best first and then don't really want what's left!

One thing I just remembered that my kids really liked!  They went to tutoring for a while and this tutoring school gave them 'money' as rewards.  The school then had a showcase in the waiting area with items with different values and kids could use their money to 'buy' things.  So the kids would see these items every day and build their excitement at 'buying' something they wanted.  My kids, deprived as they were , anxiously saved to purchase those cheap plastic toys! :ybatty:

If I were you and tried this, make sure you also offer your little boy some rewards or you'll end up with BIG problems! :lol:  And, to give yourself a treat, I would make a standing offer to double Grace's reward if she drinks the shake without debate (because the debates will come!)!

Good luck!  I hope you don't have a tough time with this!  Stephen was so much older so I really have no idea how easy or tough it'll be with a little one like Grace! :ghug:


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## Farmwife (Nov 7, 2012)

crohnsinct
Grace is still getting upset stomach. She was having this problem before EN.
So I tell her to drink slow and have her color something for a few minutes after and that seems to help. :thumleft:


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## Robs a (Nov 7, 2012)

Farmwife, my son has been doing EN for 3 weeks and I must say the first week and a half was really tough.  He suffered with constipation and did not feel very well at first.  But once his body got used to the shake he started to feel a lot better, and he increased his water intake tremendously which has made a huge difference to his BM.  We have made an effort not to eat or have food around my son, we don't sit down for family meals and at least this takes the focus away from food.  I bought a small hand blender which is great for foaming up the shake especialy with cold water.  Makes it more palatable.  Good Luck, encourage Grace to persevere!  Thiking of you!


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## my little penguin (Nov 7, 2012)

We also let DS watch tv or a show while drinking since this was a special treat.
We gave him shaved ice at dinner were he sat for the first 5 minutes for conversation then he was allowed up to play.


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## Farmwife (Nov 7, 2012)

MLP,
Shaved ice?????:sign0085:
Never heard of it!
Is that like crushed ice?

At meal times,
I make Grace drink SLOWLY because of her stomach pains thumbdown:WHICH ARE GETTING WORSE TONIGHT:thumbdown so by the time she finishes were about done. Farm families might eat a lot but we eat quick!:ylol:


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## jmckinley (Nov 7, 2012)

So sorry Grace's tummy still hurts!

Shaved ice would be like a snowcone maker. You can get those at Walmart. 

We eat much faster than Ryan too. He is always the last to finish. We just sit at the table and talk with him till he's done!


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## Farmwife (Nov 7, 2012)

jmckinley said:


> So sorry Grace's tummy still hurts!
> 
> Shaved ice would be like a snowcone maker. You can get those at Walmart.
> 
> ...


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## my little penguin (Nov 7, 2012)

Sunbeam makes a cheap version.
It helps keep up the oral and tongue skills .
Sonic ( fast food place) also sells it plain ( aka just ice)


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## crohnsinct (Nov 7, 2012)

Ah yes...we have a Black and Decker shaved ice machine.

What is this about sitting around a table and talking at dinner?  Obviously not swim families (multiple swimmers)...We eat around the dashboard running from swim practice to swim practice...holla Catherine!


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## jmckinley (Nov 7, 2012)

Farmwife,

I have some Boost Kid Essentials 1.5 (almost a whole case). I could stuff them in a priority mail box (IF IT FITS IT SHIPS!) and send them to you . Chocolate flavored!

  No Crohnsinct, you know we're a band family! We spend most of our time saying "Stop drumming on the table!"  :headbang:

I wonder if the EN would heat up like hot chocolate?


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## crohnsinct (Nov 7, 2012)

Oh I love the percussion line but Ryan blows brass right? (get your mind outta the gutters girls)!  Yep!  A band geek here..well actually I was guard.  LOVE DCI,,,still youtube videos here and there.  

I am pretty sure you are not supposed to mess with heating the shakes.

Great idea, if it fits it ships....I could ship a bunch of my regular boost also....large box only $15.  Lemmeno!


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## Jmrogers4 (Nov 7, 2012)

No heating, no freezing - does something to the protein I think mlp told me that when we were trying to make them into popsicles to get Jack to eat/drink.  We have a case of Breeze berry flavor we could send for a different flavor if you want, hate that they are just sitting in the garage.


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## jmckinley (Nov 7, 2012)

Makes sense on the heating/freezing.

Ryan plays saxophone (woodwind). Yes, he loves DCI!! They are playing Gangnam Style too! Whole stands going crazy, even the other side!


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## crohnsinct (Nov 7, 2012)

NO WAY!  Do you have video?  Is it on youtube?  If so send me the link in a pm...would love to see that...oh yeah sax...you know what they say...sax= s_x!


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## my little penguin (Nov 7, 2012)

Breeze is a supplement not complete nutrition .
So good as extra but she would still need the 5 shakes of kid version.
No cooking or freezing unless it is an extra one for the day.
Regular boost has high protein for little kids .
Please google the website.
Ok lab coat off.

For t day
Decorate a box ( cheap white ones at craft store ) with foam.
MAke it look like a cake.
Then wrap tiny  cheap toys in tissue so she can have lots of presents to open and play during dinner.
We got fancy coffee disposable cups for the holidays to put DS's shake in.
Micheal's craft store sells straws with paper things that form on them like penguins , Santa etc...
We did a sticker chart for each day finished on a calendar.
Each week worth of stickers he got cash.
Fwiw DS got better on EEN but not completely. He had too many areas involved I think .
Good luck


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## Catherine (Nov 7, 2012)

We sit around the table when my husband cooks.  Our swimming is 6 mornings a week from 5 to 7 am which leaves the afternoons mostly free.  Sarah health has not returned enough for anymore sessions.  Also she doing about 3 hour study/homework night.


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## crohnsinct (Nov 8, 2012)

Catherine said:


> We sit around the table when my husband cooks.  Our swimming is 6 mornings a week from 5 to 7 am which leaves the afternoons mostly free.  Sarah health has not returned enough for anymore sessions.  Also she doing about 3 hour study/homework night.


SLACKERS!  :wink:  

I hope she gets better soon!


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## Crohn's Mom (Nov 8, 2012)

Farmwife, I just noticed in your signature that Grace is taking Hyoscyamine.
I am curious (and too lazy to go searching lol), how long has she been taking that ?
I'm just thinking out loud here...she also takes Miralax for constipation.  I know that Hyoscyamine is used for "spasms" of the intestines, cramping, etc ? However, it slows down the gi tract as well and can cause constipation, which can lead to more pain; which I know from following your threads lil Grace has lots of pain, and lots of problems with constipation.

Maybe I'm not making any sense and I'm just talking in circles. LOL
I also noticed she takes multivitamins, which can also cause constipation in some.

Like I said...just thinking out loud...maybe you can put my thoughts together LOL.  Just something to consider in your search for reason  :soledance:


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## Farmwife (Nov 8, 2012)

Good eye.:rosette1:
However due to my severe laziness I forgot to take that out of my Sig.
My GP didn't like that med because her GI hasn't yet dx her. He thought it would be to hard on her track which was slowing down back then. Even worse now.
 Also when she was on her stomach med, started with a Z, she got better well......... until lately.
 So my doc was thinking what your thinking. Which is why he brought up EN. We're getting to a point of NEEDING meds to control her pains. So he said let's try this EN once and see.

:medal1:
Update:
Grace is still liking the shakes but reality of no food has started to sink in.
I make her drink water before she can have a shake, which she gladly does.
She seems more energetic to day.:thumright:
Down side she still hasn't had a good BM's in 5 days.:frown: The pains are starting to hit and soon I'll be giving the suppository to help.


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## Farmwife (Nov 8, 2012)

The only vitamin I heard that can cause constipation is iron. No iron in her supplements. They make her ill if they have iron. I make sure she gets hers from food. The last lads she had said iron was ok.


*Oh that reminds me I'm NOT giving vitamins right now because of EN.
Is that right????*


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## crohnsinct (Nov 8, 2012)

Depends what your doc says.  We gave multi with iron, vit d and prevacid all throughout EEN.

What's the status on scopes?


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## Tesscorm (Nov 8, 2012)

Yes, as the doctor.  We were told Stephen didn't need a multivitamin and that he should take only a calcium supplement and some vit D.  But, as formulas are different, best for the doctor to say...


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## Farmwife (Nov 8, 2012)

Thanks.
Friday is the weekly check in.
 I'd asked the doc if I could just call since I can weigh her here.
He said yes but still Would like to see her once or twice before the end of EN.
I'll ask him tomorrow.


:rosette1:Update::rosette1:
:medal1:Grace went POO!!!!!:medal1:
Lot's of it and hard.:soledance: Good get the old stuff out :ybiggrin:and the drinks I pray will keep things moving!!!:thumright:


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## my little penguin (Nov 8, 2012)

You need to ask the doc.
DS 's formula had extra calcium since it was designed for crohn's.
He did still take a flintstone's gummy.

If the stomach pain gets too bad drive her to the kiddie hospital er .
( scopes tend to happen faster at the er)


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## Tesscorm (Nov 8, 2012)

:banana:  Yay for the poo!!! :banana:    I know it's not the case for everyone but, going by Stephen's experience, he had diarrhea throughout the six weeks... not that I wish that on Grace but, maybe it'll balance out and she won't have to deal with the constipation any more!!! :ghug:

We were also told Stephen had to take Nexium (antacid) - we were told this was because he used a tube and the tube keeps the 'flap' between the stomach and esophagus open, allowing some acid to come out...  but, Crohnsinct said O was also on an antacid and she didn't use the tube???  Maybe just keep in mind that heartburn could be an issue if she's not on an antacid???


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## my little penguin (Nov 8, 2012)

You probably want to take her in to get weighed since then it is part of her medical record.
Weights recorded at home ( doc/ Gi ) will not count on her growth chart.
Insist on the same scale in the same room since they can be off by 1-2 pounds.
These weights may help you in the long run.
I know it's a pain to do - DS had weigh in every two weeks for months but it really helped us get a dx.


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## crohnsinct (Nov 8, 2012)

Poop Poop A Dooooo!!!

Has anyone else noticed thaht when you click on the dancing poo the name is Dustykat's poo? 

Tess: good point.  As a matter of fact, O was supposed to come off the Prevacid just prior to starting the EN and when I asked if we were stopping it the doc very specifically said no I want her on it because of the EN.


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## jmckinley (Nov 8, 2012)

Poo Poo pee doo!

:thumright::thumright:


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## Crohn's Mom (Nov 8, 2012)

Yeah for Poo ! 

And ok, I'm glad she's not taking the Hyoscyamine right now...at least I don't feel like my scattered thoughts are too "off" :shifty-t:
I'll just go crawl back under my rock now and leave you to the experts...utahere: :lol2:


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## Farmwife (Nov 8, 2012)

Feel free to crawl under the rock Crohn's Mom, but first let me move over, we can both fit.:lol2:



:rosette2:


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## Sascot (Nov 8, 2012)

Yay for poo!!  Hope it really gets going now.  Aaah the things we wish for!


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## upsetmom (Nov 8, 2012)

I HOPE THINGS START IMPROVING


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## DustyKat (Nov 8, 2012)

OMG! I never noticed that with the dancing poop! Ya snuck that one in didn't cha David!  

How is Grace going today Farmwife? 

Dusty. xxx


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## Malgrave (Nov 9, 2012)

We were told to stop all the vitamins supplements during the EN. 
What comes to the stools, they warned us that Neocate will make them green and loose. And yes, they are like water, sometimes green but mainly yellow. But my son has ileostomy so maybe it is a bit different case with him...


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## Farmwife (Nov 9, 2012)

:ywow:GRACE IS OFF  EN!!!!!!:ywow:

That's right! Welcome to my life on a roller coaster! 
Highs and lows, all the mean while I'm screaming I want OFF!!

Grace got MUCH worse today!!! Belly pains beyond bad while drinking the stuff!

My doc just called and said take her off and put her on just meat, veg. and rice for now.
See how it goes during the week-end and we'll recoup on Monday at his office. He said it could be an allergen or since her tummy pains were coming before starting EN, it aggravate something further. We both DON'T want her back on ulcer meds UNTIL we find out what's causing it!!! Doc said something about the GI and calling on Monday and get a final yes or no. I think he meant he would do it! :shifty:I think???:shifty:

:rosette1:Anyway thank you all for contributing to Grace's short lived EN experience.:medal1: 
BTW the shakes are easier for her then veg. and rice which she HATES. 
Tell me can I fit those things in a tube????

Yes I brought up EN's out there that are made for people with allergens but right now he feels another coarse of action is need!

:shifty:My poor hubby doesn't even know this. I have some brownies with frosting to soften the blow.:wink:


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## Catherine (Nov 9, 2012)

Poor Grace

Hope meat and vegetable work.

Thinking of you all.


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## Catherine (Nov 9, 2012)

I wait your new thead, meat, veg & rice.


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## Farmwife (Nov 9, 2012)

Catherine,
I will have to call it 


MEAT,VEGS, RICE and THE HORRORS OF IT ALL!:ytongue:

I tell y'a she HATES veggies and any kind of rice! Has since 1 yr. old.
If I could just cover those things in chocolate we would be covered!


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## my little penguin (Nov 9, 2012)

Hahaha just for you
http://www.nestlenutritionstore.com...la?rank=0&v1=rank&asc=1&catpath=pediatric.2.2

Real food in a tube


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## Susan2 (Nov 9, 2012)

Farmwife said:


> BTW the shakes are easier for her then veg. and rice which she HATES.
> Tell me can I fit those things in a tube????


Perhaps you could blend them up really fine and soft and send them down the tube.:ytongue:


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## Farmwife (Nov 9, 2012)

Susan2
  A wonderful idea. Now I wonder if I could do that to my hubby and son?????


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## upsetmom (Nov 9, 2012)

Poor little Grace .....she just can't get a break....:ghug:


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## Susan2 (Nov 9, 2012)

Farmwife said:


> Susan2
> A wonderful idea. Now I wonder if I could do that to my hubby and son?????


After I had my proctocolectomy, my gastroenterologist said that pureeing it finely would be the best thing for me to do with my food because I would get more nutrition that way. He did admit, however, that it might take all the pleasure out of eating. :eek2:

Needless to say, I didn't follow his suggestion.


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## Susan2 (Nov 10, 2012)

On a serious note, I have no large intestine and only about 2/3 of my small intestine left, so I have some problems digesting vegetables. When I am making a casserole or stew, I do grate some of the vegetables (carrots, parsnips, beetroot, ginger) and cut the others (leek, celery, fennel, etc) very finely. With long, slow cooking these end up almost as a sauce, which you could, in fact, puree if you wanted it even less identifiable as vegetables. The meat will flavour it and help to disguise the vegetables, too. (I have a casserole of gravy beef - osso bucco without the bone - in the oven at the moment 

	
	
		
		
	


	




).

This won't work with green vegetables, of course, but might even fool hubby and your son.


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## Sascot (Nov 10, 2012)

Oh no!!  Sorry to hear the EN made her worse.  How did the poor husband take it?  I was also going to suggest making a kind of soup/casserole with the meat, rice and veg, but some people beat me to it! :thumleft: Hope she isn't too bad over the weekend.


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## DustyKat (Nov 10, 2012)

Since it is only for a couple of days maybe go to a lighter type of diet?? 

Does she like soups? 

Dusty. xxx


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## Farmwife (Nov 10, 2012)

DustyKat my girl is soooooo picky. Always has been. 
Very WILLING to go to bed HUNGRY to not eat what's on her plate.:ywow:


_*OK NEW thought out of desperation*_!:frown:

She had a shake this morning and NO pain yet. :thumright:
She still is not going poo normally. 
If she could go poo every day would that help the shake to get through her stomach with out causing problems????

As far as my hubby, he wishes we could leave her on it.
 But he also know she can't be in that amount of pain everyday.
 Soon she would be scared to drink them.


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## my little penguin (Nov 10, 2012)

One thought
You said she didn't drink milk regular ( cow version) due to lactose .
But if she is milk protein intolerant then you would have to slowly increase the number of shakes over a number of days .
With my older son we had to do this around age one.
1/8 cup milk the rest water for a few days then increase until he got to a full glass .
When we put DS on EEN we were told by the Gi to slowly increase it and to not go from all food ( with one or two boost a day) to 7 peptamen jr a day overnight since that would make him sick. We slowly doubled his intake while still on food until he was able to drink all 7 in a day . Just something to consider.

For DS at least when he is not doing well veggies come out the way they go in so it was really pointless.

Some kid friendly veggie idea 
Plum kids makes squeeze friendly veggie fruit smoothie things which could get you through the weekend- target carries them

http://www.plumorganics.com/products#kids

Other ideas
Chicken and rice soup
Rice bread with strawberry 
Rice crispy cereal/ puffs
Is she allowed eggs?
Make a eggie bake with purée veggies in it.
Rice flour/ potato/ soughum etc muffins with blueberries
And sweet potato or squash dinner rolls( no milk required )
Hugs


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## Farmwife (Nov 10, 2012)

UPDATE:

She went poo and blood dipping out as she pushed and stool that's jet black.

Alright I've had enough!


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## my little penguin (Nov 10, 2012)

Call the on call Gi
Now not Monday
Explain grace is a patient of dr xyz
And now has blood and black stool.
Our Gi is ok watching and waiting many things but black stool is not one if them.
If they don't call in a timely manner
Take her to the kiddie er where the Gi is or another kiddie hospital to been seen.
If she doesn't look right your mommy gut is telling you it's not right take her to the kiddie er.


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## Susan2 (Nov 10, 2012)

Did you save the stool to take with you?


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## Johnnysmom (Nov 10, 2012)

Agree with mlp.  They might scope her as well and figure this out once and for all. Can't stress enough how important the Children's hospital is.  We learned that lesson the hard way 

Good Luck :ghug:


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## Farmwife (Nov 10, 2012)

Called the GI on-call and he said to get her to our local hospital (Which is the the largest in our area and highly rated) and he wants them to run labs and take vitals. He said HE will be in talks with them and if something sounds wrong to me ask them if the GI OK it.
He said the distance is just long enough that he doesn't want something to happen on the road. He did say that it sounded like a MAJOR internal bleed somewhere.

Grace is happy but she can't sit. POOR BABY!


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## Suzysu (Nov 10, 2012)

ER NOW? xxxx


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## my little penguin (Nov 10, 2012)

Good luck at the hospital


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## Crohn's Mom (Nov 10, 2012)

Best of luck !! 
Hopefully they will finally get your sweet baby girl some answers and help !


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## Tesscorm (Nov 10, 2012)

Thinking of you!!! :ghug:


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## Lewiss mum (Nov 10, 2012)

Omg farmwife , I nope everything is o,k I havnt been on for a while , thinking of u and Gracie lots ov lve,xx


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## QueenGothel (Nov 10, 2012)

Holy crap.  Omg I hope she is not having an internal bleed.  Is she on any iron for her bleeding? I am hoping this is the source of the blackened stools. On pins and needles keep us posted.  Where are you taking her?  Praying it is a children's hospital.  A hospital that doesn't specialize with kids can be a nightmare for kids.  They don't have the right needles for IVs or gowns or the knowledge.  Scared for you guys.:shifty-t:


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## Malgrave (Nov 10, 2012)

Oh no! I know what you are going through. I hope everything goes well and Grace gets some relief very soon!

I am thinking of you.


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## momoftwinboys (Nov 10, 2012)

Sending positive thoughts and prayers that grace gets answers and feeling better today


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## DustyKat (Nov 10, 2012)

Oh my goodness Farmwife! Poor you and poor little Grace...:hug::hug::hug: 

I hope you are being well looked after hun and Grace is getting the care and attention she needs from the doctors and nurses. 

When the dust settles a little hun it may well be the right time to push for the scope if they don't suggest it.

Sending loads and loads and loads of love, luck and healing thoughts your way! 

Dusty. :Karl:


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## Suzysu (Nov 10, 2012)

thinking of you and Grace xxxx


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## Farmwife (Nov 10, 2012)

Thanks everyone!
Were home now and torn.:frown:
I told the ER doc and nurses to call the GI 3 times. Never did!
They took Grace's labs. All but three came back fine.
Grace was happy and full of ...ya know!
Sent home because it's clear to SEE she's not suffering.
They saw the pain when she drank WATER!!!!
Rectum to swollen for exam.
But hey, she's happy!:medal1:

Called GI and he said our GI is gone all week long but since labs look good..... call on Monday and see what the covering GI wants to do. He said if it gets worse come on down. I ASKED for scopes but he said that's up to the on call GI's evaluation of Grace.
So here I type again in disappointment. Still don't know what to do. 
Her WBC is the lowest it's been. 
Her Lymphocytes our so low it's called something now. Forget the name.
MCV is way up there also. But don't worry she looks HAPPY!!!!
She was dripping a little blood again when she just tried to poo.

I have to get everything ready for Sunday Church. 
Yes it takes me a whole day to do it.:ybiggrin:
99 percent of preparing is for the kids and hubby.


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## Catherine (Nov 10, 2012)

Poor baby.

is lymhopenia the word your looking for.


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## Sascot (Nov 10, 2012)

So very sorry to hear all this!  I sympathise with the "she can't be that bad, she looks happy" :ywow:  Ridiculous they sent you home again.  I am very angry on your behalf!  Hope the GI does something on Monday - rolling pin ready!


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## DustyKat (Nov 10, 2012)

Sending loads of these your way Farmwife...:hug::heart::ghug:

Ugh! It is just this sort of thing that makes having an invisible disease so frustrating, heartbreaking and damnable.  

Thinking of you and your Princess, always. :Karl: 
Dusty. xxx


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## upsetmom (Nov 10, 2012)

Thinking of you.....:hug:

Can't believe they sent you home...:confused2:


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## Farmwife (Nov 10, 2012)

Catherine said:


> Poor baby.
> 
> is lymhopenia the word your looking for.



Yes Catherine I think thats what it was. Do you know anything about it? How low does the level have to be to be call that???
The ER doc said our GP can handle it. 


Update: 
Grace had another BM with no dripping blood but stool is very black still.:ywow:
I did get a sample of that!


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## Sascot (Nov 10, 2012)

Definately time for a scope - not quite sure what other motivation they might need other than dripping blood and black stool!!  Glad you managed to catch some of the latest poo.  Why don't you try writing absolutely everything down for the whole of tomorrow. When Amy was in hospital last week we were told to write down every time she was in pain (including the time) - it certainly made them take notice (not that it helped us).
You could make a note of every time she seems really sore, what her level of pain is, where the pain is, bowel movements, joint pains, etc.  Then when they see Grace, you can present them with an itemised list of what happens in just one day.


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## Farmwife (Nov 10, 2012)

Thanks Sascot.
I'm doing that already. 
I didn't think to take it to the ER.
 I will take when we go down state.


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## my little penguin (Nov 10, 2012)

Hugs- if for any reason she gets worse take her down state to the Gi .
And call the on call Gi .
Hope the covering Gi wants to get to the bottom of her issues.


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## Catherine (Nov 10, 2012)

Sarah has had low lymphocytes for over 12 months but in August they started call it mild lymphopenia.  The first time word appear it was combined with a bordineline white cell count.

Action taken by our gi repeat full bloods.

With the repeated blood the lympocytes when up slightly,but white cells no longer bordine low so no need to worry.  Still mild lymhopenia.

GET THE TEST REPEATED.


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## Catherine (Nov 10, 2012)

I think high mvc has something to do with b12, will get back to you on that after I complete one of my many trip to dancing today.

Called David as B12 is his thing.


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## Farmwife (Nov 10, 2012)

Interesting about B12. 
Grace is low but not low enough that my doc thought she need supplements.


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## Catherine (Nov 10, 2012)

High mvc means the red blood cell are too big.  You gp needs to work out cause, one cause is low b12.  

Low mvc means the red blood cells are too small.  This can be caused by low iron.

The little research I have done says that high mvc always requires the cause being found and treated.

GET B12 and folate done as well.


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## Catherine (Nov 10, 2012)

I have bumped my b12 thread for you.

We need one of those people good at explaining like Dusty or Aussie.

This is my understand you could two things at play with the MCV..  We know that Grace is bleeding which can cause the MCV to decrease but also low B12 which could cause the MCV to rise.  So the MCV is being pulling in both directions.

Does explaination make any sense.


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## kimmidwife (Nov 10, 2012)

Thinking of Grace and you! I hope she is doing okay now, I am anxious for you both. Please continue to keep us updated!


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## Aussie (Nov 11, 2012)

Hi Farmwife and Catherine,

Firstly to the lymphopaenia - your white cell count is made up of a number of different white cells (principally neutrophils and lymphocytes). If one of these are low, then they may cause the over white cell count to drop below the normal range.

When the lymphocytes are low (lymphopaenia) there are a number of things you need to look for. Firstly how low, then compare to previous results to get a trend. There are a number of things that can cause to lymphocytes to drop - stress, infections, drugs, etc. Always worth repeating the test and see if it's still dropping or starting to improve. A short lived drop is much less concerning than a prolonged lymphopaenia which would need further investigation.

In regards to the MCV (mean cell volume - how big the red blood cells are), there are a number of factors that can both increase and decrease the size of the red cells, and you can have two competing factors at play which will lead to an "inappropriately normal" MCV. When looking at the MCV, need to look at the number, how far out of range is it, then look at previous results to get a trend of what the MCV is doing, is it a sudden rise or a slow one, etc. 

As stated previously, B12 and folate deficiency (and thiopurines) can lead to a rise in the MCV, as iron deficiency (and thalassemia) can lead to a fall.

GI bleeding is a little tricky, long term GI bleeding can lead to iron deficiency as the red cells are full of iron, which will cause a fall in the MCV. However, acute GI bleeding, depending on the severity, can cause a reticulocytosis (immature red cells (reticulocytes) are pushed out of the bone marrow into the blood stream to make up for the blood loss), these immature cells are larger then normal red cells, leading to a rise in the MCV.

Given that Grace has black stool, which is concerning for melaena (when blood is digested, it turns black, usually from higher in the GI tract, as bleeding in the colon tends to come out red, darker red if earlier in the colon, and bright red as you get closer to the end), then the higher MCV could indicate acute blood loss, which should be addressed reasonably promptly. Is Grace anaemic? Important to keep a close eye the haemoglobin when there is active bleeding.

Good luck, hope it all turns out well.


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## Suzysu (Nov 11, 2012)

OMG - I can't believe they just sent her home!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I really feel for you and totally hate the 'well she looks happy so she must be 100% healthy' attitude - we have that with Freddy also - I hope and pray that your GI orders some scopes as the others have said - what more evidence does he need to order them!!!!!!!!!!!!!!!!
sending big hugs xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx


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## Tesscorm (Nov 11, 2012)

So sorry they still haven't taken this seriously...  I can imagine how frustrated you are.  Really don't understand what they're seeing or not seeing that's leading them to believe it's okay to send her home?!?!?  :ghug:


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## Farmwife (Nov 11, 2012)

Update:

Bad belly pains last night and blood in her stool this morning.:confused2:
Second BM in afternoon but NO blood and no stomach pains before hand. 
Any thought as to WHY?:ghug:
Still plan on heading early tomorrow morning. 
Of course we all know how fast plans can change.
 My son is starting to get a barking cough. OF COURSE!!!:yfaint:


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## David (Nov 11, 2012)

Elevated MCV can indeed be a symptom of B12 deficiency (and plenty of other causes as well of course).  What was her B12 level last time she was tested and when was the test done?

*edit*  Boy am I late to the party!  Sorry


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## Farmwife (Nov 11, 2012)

Thanks David. Her level was the lowest of the low end. Sorry I don't have the paper with me. Crazy around here.

Update:
Leaving Tuesday with a new plan in mind.
Thanks everyone for the support it means the world to me.


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## Aussie (Nov 12, 2012)

Farmwife said:


> Update:
> 
> Bad belly pains last night and blood in her stool this morning.:confused2:
> Second BM in afternoon but NO blood and no stomach pains before hand.
> Any thought as to WHY


Hi Farmwife, when you have a GI bleed, the blood in the intestines isn't well tolerated, causing pain and cramping, acts as a strong laxative too (if you bleed enough). Might explain the pain with the bleeding.


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## Farmwife (Nov 12, 2012)

Thanks Aussie and everyone!:hug:

Grace had no blood in the stool this morning but now the stool is runny.:yrolleyes:
The stool however had a lot of mucus.:confused2:

Lots to do today to get ready for a trip in which I have no idea how long I'll be down there. I think I'll take each of us a change of cloths just to be on the safe side.:smile:




:ghug:

Good bye y'all for now. 
Stay safe and pray I make it out of the city alive. 
Of course my trusty rolling pin of defense (Patten still pending) will be attached to my side.:rof:


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## Catherine (Nov 12, 2012)

Good luck with the trip to the big city.


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## Tink572 (Nov 12, 2012)

Poor Grace.  Be safe on your trip to the city.  I hope you can finally get some answers.


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## Twiggy930 (Nov 12, 2012)

Just caught up on this thread.  What a roller coaster!  I am thinking of you and your family and hoping that the docs get on top of this soon.  FWIW we had to camp out at the Children's Hospital a few times to get timely care.

:hang:


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## Sascot (Nov 12, 2012)

Thinking of you! Hope they do something!


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## Tesscorm (Nov 12, 2012)

Good luck!!!! :ghug:


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## Farmwife (Nov 12, 2012)

Just heard from the GI nurse and the Doc on-call wants me to go to the closest lab tomorrow and pick up stick to test for blood in the stool and a sample to test for white blood cells in the stool. Of course go to the ER if blood gets bad again they said. That's it right now.
 So my day has not gone according to plan and my night will involve tears as I hold Grace as she poo's or tries to eat.
 Sorry feeling quite low tonight.:frown:
:heart:Talk to everyone in a day or two or three or more.:heart:


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## Sascot (Nov 12, 2012)

My heart is hurting for you and Grace!  Hope she manages to go poo so you can get that sample without too much pain!  Will be sending warm thoughts across to you.  Hope Gunner's cough hasn't got any worse.


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## jmckinley (Nov 12, 2012)

:hug::hug:  Hugs Farmwife! I am so sorry about the rollercoaster for you and Grace! This is so frustrating and I know how awful it is to watch your child suffer. 

I say take your suitcase and your rolling pin...sit down in the ER/GI office and and with anger and tears in your eyes...tell them you aren't going anywhere until they do SOMETHING! Believe it or not, that does work! Been there, done that! And if they try to get you out...you know what that rolling pin is for!!!  :voodoo::voodoo:  Picture all of us protesting right there with you! Tell them they don't want you to call up your Posse!

I hope you get some relief soon!


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## my little penguin (Nov 12, 2012)

Second that- I have told the Gi something has to change since what we are currently doing is not work then explain how you have to hold her to have a BM .
The tears etc...
Sometimes they only hear symptoms xyz not child in pain.
So go into detail as necessary.
Hugs


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## kimmidwife (Nov 12, 2012)

Hugs! Just wanted to say thinking of you guys and praying these doctors listen and help Grace find some relief! Like MLP said keep pushing and make them listen!


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## crohnsinct (Nov 12, 2012)

If she will let you, video her going and let them see first hand the agony she is in then let them tell you to wait more.  Just show her face...nothing else needed.  And if you have to keep the tape running so they also see how long.  I am shocked you aren't in a straight jacket or jail by now!


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## QueenGothel (Nov 12, 2012)

I regards to the stool test.  If she poops catch it in a hat and fill a clean pill bottle, brown bag it and store in refrigerator and take it with you if she goes.  They can test it right in front of you.


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## DustyKat (Nov 13, 2012)

Thinking of you and your little Princess and sending loads of love, luck and healing thoughts across the pond...:hug::heart::hug::heart::hug: 

Dusty. xxx


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## Suzysu (Nov 13, 2012)

ARRRRRRRRRG! - I ust can't believe they are not doing more for little grace - I think you should just go and camp out in ER or the GI office untill they do something - big hugs xxxx


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## crohnsinct (Nov 13, 2012)

I can't remember but did you grab that motility test appointment?   What was that date?  Just thinking maybe you should grab it  because if they still aren't doing anything and that is the thing the GI wants then at least it is something and if it reveals her issues great, if not then maybe that is what he will need to move on to scopes.


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## Jmrogers4 (Nov 13, 2012)

Poor Grace, just getting caught up after the weekend in the big city and I was hoping to hear Grace was feeling better.  Praying for you and sending loads of hugs your way


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## jmckinley (Nov 13, 2012)

Just stopping in to check on you and little Farmgirl! I hope that your absence means something is getting done! Hugs!


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## Lewiss mum (Nov 14, 2012)

Hope all is going well and your getting some answers,xx


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## Farmwife (Nov 15, 2012)

Update:

Grace has 3 wonderfully days. Not so much as a knee pain or belly pain.
We started more Miralax and put her back on Zantack. All seems well so far.
She did have some black in her stool but we don't need to think on that right now.

We are seeking a second opinion from UofM Hospital called C.S. Mott's children's hospital. 
The hospital in Ohio had a six month waiting list.
Her GI said in his notes that he wanted Cincinnati to give a second opinion on Grace's case. He wrote the Grace is a "hard case". I'm glad he see's that but I just wish he would have told me!!!! Just to hear the words we know something is wrong and he will figure this out, is something that would have made a huge deferents in my outlook.
Any way six month waiting is to long so we're hoping to get in to Mott's soon.
Devos social worker has been great and working with me every day to get stuff transferred to Mott's. She even said we're welcome back anytime. That made me happy to hear. I'm calling my doc to see if we can go to the rheumy at the same time at Mott's.

So there ya go. I'm happy and Grace is happy and drinking 3 shakes a day to put her weight back on.

:ghug:

Now if you don't mind I see another thread that's debating meds vs nutrition. I shall add my Farmwife advice to heat things up!:rof: I'm bbbbbaaaaacccckkkkk!


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## my little penguin (Nov 15, 2012)

One piece of advice
Go to Motts
But also make the appt at cchmc
A lot can change in 6 months 
And you can always cancel closer to the date if you don't need it
But at least you won't be another 
6 months out.


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## Tesscorm (Nov 15, 2012)

I'm so glad she's feeling better!!!  May the good days continue! :medal1:

And it does sound like things are moving along...   more waiting :ymad: but at least moving in the right direction! :banana:

I hope she has more good days than bad while you're waiting for the appointment!!!


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## crohnsinct (Nov 15, 2012)

I second that MLP!  Always be prepared is my motto.  If you have to cancel you make someone ele's day.  Grab those appointments.  So motility study on hold until you hear wehat Mott's GI wants or are you going foward with that?


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## Farmwife (Nov 15, 2012)

The mobilities study is six months down the road at Ohio. To long.
Which is why we want Mott's now. Rowen went to Mott's. 
It's very highly rated. My twin is heading back their to get more care for my dear nephew that has a rare form of epilepsy that was triggered by a strep infection that got in his brain. Poor kid!


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## QueenGothel (Nov 15, 2012)

I hope you get to meet Chris Dickinson.  He was wonderful.  At the time he was the Director of the Department.  He is one of the Attending GIs now.  The man is so smart you can feel it when he enters the room. I really hope they help her.  Best in the state.  They do great too with making the kids comfortable.  Everything is designed with kids in mind. Very high tech, and you never share a room when admitted. I pray they give you a second opinion that gets Grace a diagnosis.

I think yes on the getting the Cleveland appointment you might need that in your back pocket in 6 months.  

Glad she has had some good days.  :rosette2:


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## jmckinley (Nov 15, 2012)

Sooooo glad to hear that Grace is feeling better and that answers are hopefully headed your way! I third that you should go for Mott's but keep the Cincinnatti appointment. Get on their cancellation list too! You never know. Ryan's first GI (who we just loved) works at Cincinnatti Children's now.

I feel for your nephew. I have some friends here who had a similar thing happen with Strept.

So glad you are back!


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## Crohn's Mom (Nov 15, 2012)

So happy to hear grace is doing good at the moment - and drinking her shakes and maintaining weight  

Keep up the good work momma!!


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## Sebestian (Jan 4, 2016)

Hello All,

I just bought rice cereal with banana pear & milk for my kid from 
How much would you recommend this product for your kid? 
Need genuine suggestions, guys!
Regards,
Sebastian


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## CarolinAlaska (Jan 4, 2016)

Hi Sebestian, how old is your child?  What are you trying to do with the product/what seems to be the issues you are facing?


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