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Farm Girl and EN

Farmwife

Farmwife

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.:D

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:
 
Tesscorm

Tesscorm

Moderator
Staff member
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:
 
poppets mum

poppets mum

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.
 
Sascot

Sascot

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!
 
DustyKat

DustyKat

Super Moderator
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
 
Farmwife

Farmwife

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. :D I know the future will tell but right now I'm pretty happy just to be doing SOMETHING to help.:heart:
 
DustyKat

DustyKat

Super Moderator
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.
Click to expand...
Amen to all that Farmwife! :heart::heart::heart:

Dusty. :hug:
 
Catherine

Catherine

Moderator
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.
 
Crohn's Mom

Crohn's Mom

Moderator
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 :)
 
my little penguin

my little penguin

Moderator
Staff member
: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:
 
kimmidwife

kimmidwife

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!
 
Malgrave

Malgrave

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?
 
Farmwife

Farmwife

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:
 
Malgrave

Malgrave

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...
 
Farmwife

Farmwife

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?
 
my little penguin

my little penguin

Moderator
Staff member
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 .
 
Tesscorm

Tesscorm

Moderator
Staff member
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!
 
Malgrave

Malgrave

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.
 
Twiggy930

Twiggy930

Location
Canada
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.
 
Sascot

Sascot

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.
 
DustyKat

DustyKat

Super Moderator
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
 
M

Mumof4

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.
 
Farmwife

Farmwife

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:
 
Malgrave

Malgrave

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!
 
Farmwife

Farmwife

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:
 
Malgrave

Malgrave

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 ;)
 
Farmwife

Farmwife

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.:cool:

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:
 
Clash

Clash

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.
 
Jmrogers4

Jmrogers4

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.
 
Tesscorm

Tesscorm

Moderator
Staff member
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!) :D
 
my little penguin

my little penguin

Moderator
Staff member
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.
 
Twiggy930

Twiggy930

Location
Canada
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!
 
DustyKat

DustyKat

Super Moderator
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
 
Farmwife

Farmwife

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
Click to expand...
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:
 
Farmwife

Farmwife

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:
 
Tesscorm

Tesscorm

Moderator
Staff member
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:
 
my little penguin

my little penguin

Moderator
Staff member
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
 
C

crohnsinct

Well-known member
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?
 
C

crohnsinct

Well-known member
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!
 
Farmwife

Farmwife

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!:cool:

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:
 
Tesscorm

Tesscorm

Moderator
Staff member
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:
 
R

Robs a

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!
 
C

crohnsinct

Well-known member
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!
 
Farmwife

Farmwife

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:
 
Crohn's Mom

Crohn's Mom

Moderator
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:
 
Tesscorm

Tesscorm

Moderator
Staff member
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! :eek: 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! :eek: :eek:
 
Clash

Clash

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.
 
my little penguin

my little penguin

Moderator
Staff member
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.
 
Farmwife

Farmwife

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:
 
C

crohnsinct

Well-known member
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!
 
Farmwife

Farmwife

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.
 
C

crohnsinct

Well-known member
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

Well-known member
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.
 
Tesscorm

Tesscorm

Moderator
Staff member
Poor Stephen... Trying to remember... but I don't remember bribing him! :cry: 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:
 
Farmwife

Farmwife

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:
 
R

Robs a

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!
 
my little penguin

my little penguin

Moderator
Staff member
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.
 
Farmwife

Farmwife

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:
 
jmckinley

jmckinley

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!
 
my little penguin

my little penguin

Moderator
Staff member
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)
 
C

crohnsinct

Well-known member
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!
 
jmckinley

jmckinley

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

Well-known member
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!
 
Jmrogers4

Jmrogers4

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.
 
jmckinley

jmckinley

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!
 
C

crohnsinct

Well-known member
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!
 
my little penguin

my little penguin

Moderator
Staff member
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
 
Catherine

Catherine

Moderator
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.
 
C

crohnsinct

Well-known member
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.
Click to expand...
SLACKERS! :wink:

I hope she gets better soon!
 
Crohn's Mom

Crohn's Mom

Moderator
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:
 
Farmwife

Farmwife

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.
 
Farmwife

Farmwife

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????
 
C

crohnsinct

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

What's the status on scopes?
 
Tesscorm

Tesscorm

Moderator
Staff member
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...
 
Farmwife

Farmwife

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:
 
my little penguin

my little penguin

Moderator
Staff member
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)
 
Tesscorm

Tesscorm

Moderator
Staff member
: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???
 
my little penguin

my little penguin

Moderator
Staff member
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.
 
C

crohnsinct

Well-known member
:poop::poop:Poop Poop A Dooooo!!!:poop::poop:

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.
 
Crohn's Mom

Crohn's Mom

Moderator
Yeah for Poo ! :poop::poop:

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...:eek:utahere: :lol2:
 
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