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11-03-2012, 08:06 AM   #1
Farmwife
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Farm Girl and EN

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.

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.

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?
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
11-03-2012, 09:39 AM   #2
Tesscorm
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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!!!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
11-03-2012, 10:10 AM   #3
poppets mum
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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.
11-03-2012, 10:54 AM   #4
Jmrogers4
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We have not had to do EN but I hope it will make Grace feel better.
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Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
11-03-2012, 11:31 AM   #5
Sascot
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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!
11-03-2012, 04:03 PM   #6
DustyKat
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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!

Dusty. xxx
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11-03-2012, 04:25 PM   #7
Farmwife
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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.
11-03-2012, 04:29 PM   #8
upsetmom
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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....
11-03-2012, 04:41 PM   #9
DustyKat
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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!

Dusty.
11-03-2012, 05:00 PM   #10
Catherine
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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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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
11-03-2012, 05:21 PM   #11
Crohn's Mom
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Here's to healing !

Little farmgirl needs a break !
(and answers !)



ps: I think the NG tube would be much easier in the long term for her
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DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
11-03-2012, 06:30 PM   #12
my little penguin
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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/...=pediatric.2.2

http://www.abbottstore.com/child-nut...iasurepeptide/



http://www.abbottstore.com/child-nut...r,elecarechild


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


feeding tubes 101

http://community.kidswithfoodallergi...82717251787386

good luck
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DS - -Crohn's -Stelara
11-03-2012, 07:14 PM   #13
kimmidwife
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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!
__________________

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
11-04-2012, 05:00 AM   #14
Malgrave
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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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*Son (9 years) with severe Crohn's diagnosed at the age of 26 months, currently UC or Crohn's colitis
*Current mediacation: IVIG, Humira, Azathpriorine, Eusaprim
(Tested but failed: Modulen IBD, Neocate advance, Budenofalk, Remicade, Azathpriorine, MTX, Jerusalem cocktail, cycklosporine, pentasa,...)
11-04-2012, 07:00 AM   #15
Farmwife
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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.
11-04-2012, 07:47 AM   #16
Malgrave
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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...
11-04-2012, 07:57 AM   #17
Farmwife
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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?
11-04-2012, 09:11 AM   #18
my little penguin
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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.kidswithfoodallergi...elemental_diet
11-04-2012, 09:57 AM   #19
my little penguin
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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 .
11-04-2012, 10:37 AM   #20
Tesscorm
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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!
11-04-2012, 11:19 AM   #21
Malgrave
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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.
11-04-2012, 11:50 AM   #22
my little penguin
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One mom said it might be the stomach acid.
Glad you are checking with your doc
11-04-2012, 11:54 AM   #23
Twiggy930
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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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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
11-04-2012, 12:58 PM   #24
Sascot
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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.
11-05-2012, 06:28 AM   #25
DustyKat
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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
11-05-2012, 08:13 AM   #26
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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.
11-05-2012, 08:17 AM   #27
Farmwife
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Thanks Mumof4

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.
11-05-2012, 08:18 AM   #28
Farmwife
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Paging Malgrave ,

Did you ever get an answer to the black stops?
11-05-2012, 11:27 AM   #29
Malgrave
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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
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!
11-05-2012, 11:35 AM   #30
Farmwife
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Thanks a bunch.

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