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Crohn's Disease Forum » Parents of Kids with IBD » The Little Farm Girl, LDN, Full EEN & Mayo Clinic


 
10-14-2013, 08:18 PM   #1
Farmwife
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The Little Farm Girl, LDN, Full EEN & Mayo Clinic

After much debate with doctors (I'm sure they hate me now) and wanting what's best for my little farm girl
we've decided to remove all foods and leave her on full EEN.

She will still be on LDN and once her weight gets stable we will up her dose to 2.0mg.

This current flare up brings-

Abdominal cramp
constipation with fissures
vomiting
loss of appetite (she's back to using her pump full time)
Asthma
Eczema
Bladder inflammation
Blood sugar problems
Joint weakness and pain
Low vit D, low zinc and magnesium

Now if you can't tell what's being caused from her IBD or EGID's, don't worry...neither can her doctors.

So we all felt full EEN would be the best for both diseases at this point in time.

New medications
Phenergan for nausea
Tramadol- if I want it for her.


I started the first steps today of seeking an urgent second opinion from Mayo Clinic in Minnesota USA,
It's not just for a GI reasons but for an overall approach.
She has so many area's that are going haywire.

My mommy gut is telling me it's all linked.


On a good note:

We bought our first snow cone machine and I found artificial flavoring and we made some and she LOVED it.
I mean I have to be the COOLEST MOM EVER, who else lets their kids eat sugary snow cones for dinner.
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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
10-14-2013, 08:38 PM   #2
my little penguin
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I did
You can use Kool aud packets plus sugar to make cheap flavors
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DS - -Crohn's -Stelara
10-15-2013, 11:35 AM   #3
araceli
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Don't worry, you are not the only mom a Doctor hate. I know they are the ones that study all those years, but we are the ones that see our kids everyday. I learned with my daughter that I have to follow my gut. Look for answers until you find them, it does not mater if is 2 or 3 or 4 opinions. I wish you the best with your appointment at Mayo.
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Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
10-15-2013, 03:48 PM   #4
EthanClark
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Good Luck Farmwife. I hope they are able to find what will work best for Grace to treat all her different conditions. Clark has been on EEN since December last year. I believe we will keep him this way until he is no longer in remission. Hopefully it will last a very long time. It is hard at times to keep doing the EEN as he asks to smell our food when he is having a hard time but he has been such a trooper throughout all of this. He knows if he eats then he hurts so as long as it is working we will keep it up.
10-15-2013, 04:35 PM   #5
Kev
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IBD by itself is a nightmare. What you are going through is beyond description. All I can do is offer my prayers and well wishes.
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KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
10-15-2013, 08:44 PM   #6
kimmidwife
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I really hope mayo clinic can give you some good answers. I have heard very good things about it!!!
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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.
10-15-2013, 11:38 PM   #7
Mehita
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Welcome to Minnesota
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
10-16-2013, 08:42 AM   #8
Sascot
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Sending you hugs all the way from Amsterdam! Hope the full EEN helps and the appointment comes through quickly.
10-16-2013, 03:05 PM   #9
Malgrave
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Sounds so hard but I know how you feel!
We had to seek for help from another country last year and it was worth all the trouble.
Good luck in Minnesota!
Have they ever done basic immunological tests for Grace to rule out posiible immune dificiencies?
10-16-2013, 04:38 PM   #10
Brian'sMom
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Good luck at Mayo. You should be able to get in quickly...we did. Going with your mommy gut is always a good start!
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
10-16-2013, 04:41 PM   #11
Farmwife
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We got in the first part of November. That was quick!
Malgrave, she's never had that kind of testing. I'll have to ask them about it.
10-17-2013, 09:35 AM   #12
Jmrogers4
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Glad they got her in pretty quickly. Hope you get some more answers.
Meant to write earlier but things kept getting in the way. I would think full EEN would be a little of a relief even though it will be hard but almost like one less thing to worry about kwim. You will know she is getting all the nutrition that she needs and don't have to worry about reactions to different foods.
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Jacqui

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
10-17-2013, 10:36 AM   #13
Farmwife
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Yes right now the full EEN is a good thing. She now will only finish a few bites of her snow cone but then says she's full.

I'm thinking this flare has to do with IBD ONLY.
6 wks before the last scopes she was EEN only. She did have a couple weeks of food after that but not to much and then she stopped eating. By now if it was an EDIG's thing it would have stopped because of full EEN.

I want her to have an MRE!
I've asked for an MRE three times. I've always been told no.
I have always felt that the problems are where we can't see them with scopes.

I just pray The Mayo will help.
10-17-2013, 01:10 PM   #14
Mehita
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Have they said why they don't want to do an MRE? That always annoys me. If they refuse do a certain test, tell me why. Sometimes it's for really, really DUMB reasons.
10-17-2013, 05:09 PM   #15
my little penguin
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It may be your insurance
Alot of times that can be the reason for a NO.
10-17-2013, 05:18 PM   #16
Niks
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Poor Grace and poor you

Really hope Mayo Clinic comes up with some solid answers and solutions.

I have everything crossed for you xxx
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Daughter 22, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteopenia bordering on osteoporosis



Peristeen Irrigation every other day.
Citramag/Picolax

Waiting for bowel stimulator!
10-18-2013, 07:14 PM   #17
Jfarrelly
 
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My little boy is 4 yoa and was diagnosed with Crohn's 4 months ago we've been on Pentasa, Sulfalizine, Rowasa, Cortifoam, and multiple times on Pred. We seeked a second opinion at CHOP today and they suggested enteral feedings. We have yet to be in any form of remission how is little one doing with the enteral feedings? Did you start taking it orally, or by NG tube? I know where you are coming from hugs to you and your little one.
10-31-2013, 09:53 PM   #18
Farmwife
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My little boy is 4 yoa and was diagnosed with Crohn's 4 months ago we've been on Pentasa, Sulfalizine, Rowasa, Cortifoam, and multiple times on Pred. We seeked a second opinion at CHOP today and they suggested enteral feedings. We have yet to be in any form of remission how is little one doing with the enteral feedings? Did you start taking it orally, or by NG tube? I know where you are coming from hugs to you and your little one.
Sorry it took so long to get back to this.
Corn season in full swing + planning for a trip + plus a sick girl + one tired mama.

Grace started with an n-g tube. We had a home health care nurse came and put it in every 4 weeks. Grace has another disease where here body fights food protein as if it's a invader. So EEN for her is a must to survive. She now has a g-tube.
My son was on EEN for 3 weeks and did it orally and still drinks 2 a day.
I think EEN should be a must for treatment.
Even if it's just for growth it's worth it.
She also does LDN.

Off until after the trip. I hope all is well.
11-01-2013, 10:00 AM   #19
Mehita
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Do you have a date yet, FW?
11-01-2013, 07:35 PM   #20
Farmwife
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Do you have a date yet, FW?
Yes, it's sooner than later,
Still have so much to do.

Update:
Grace's pain in her belly has started again Her pain radiates to her back.

She's on Zofran everyday.
She would vomit in the evening and half the day's formula would come out.
The Zofran is helping but no one knows why
her stomach isn't draining in the evenings and sometimes in the morning.

The most upsetting is the fact the my sweet baby girl has decided
she hates her formula, hates her medicine, hates her backpack and calls it evil. hates telling me when she hurts and last but not least she hates her g-tube. She took her extra g-tube out of her Teddy and said to sew it back up to normal.
She ask for food that she's never been able to have and says I'm being mean to her when I say NO.

I'm glad we're going to the Mayo. Can't get their quick enough.

Bye y'all.
11-02-2013, 04:12 AM   #21
Sascot
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So sorry to hear that. Really hard to watch kids when they are not happy about treatment. Thinking of you!
11-02-2013, 04:41 AM   #22
DustyKat
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Sending much love and hugs your way FW and mega loads of luck that the Mayo clinic is able to provide you with solid answers and your princess lasting relief! Bless her.

Thinking of you both, always.

Dusty. xxx
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Mum of 2 kids with Crohn's.
11-02-2013, 07:13 PM   #23
crohnsinct
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Aw! Poor pumpkin. Might be time to ask about a therapist. She is dealing with A LOT and it couldn't hurt to talk to someone. You are also dealing with a lot and a little help here might go a long way.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
11-03-2013, 09:36 AM   #24
dannysmom
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I just want to wish you best of luck at Mayo. I hope they can help Grace more. HUGS!
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Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
11-03-2013, 10:37 AM   #25
khollmann
 
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I wish you the best of luck! The Mayo in Jacksonville, FL has been amazing to my father and I. The overall approach is the best. I live in NY, so I get a similar approach at Stony Brook University Medical Hospital.

I was diagnosed finally, when I was 15, and my Mom fought with all the dr.'s too. Had too. And boy am I forever grateful that she did. Hugs to you! You are a wonderful MOM.
11-06-2013, 06:08 PM   #26
Mehita
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Any news Farmwife? Been thinking of you. And it did snow after all!
11-06-2013, 06:12 PM   #27
Niks
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Thinking of you and Grace too FW. Hoping everything is going well xxx
11-08-2013, 10:52 PM   #28
Brian'sMom
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You will like Mayo. I hope you get some answers. And your sweetie gets some relief soon.
11-09-2013, 05:30 PM   #29
Sascot
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Was also thinking of you today. Hope Grace is doing alright.
11-09-2013, 08:31 PM   #30
Farmwife
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We're back.
Mayo was AMAZING. So much help from everyone. From the hotel to the hospital it was all first class.

Over 10 doctors, over 4 days. Every doc we meant took time and asked detail questions.

Meant with the GI, she was amazing. Loved her.
She said she would want to do a ct scan, scopes, pill cam and mobility test. She said she would want to get the FULL picture in order to give her opinion on what's causing these flares.
Sounds like a dream right?????
Well we didn't get to see her until Thursday and we were flying out on Saturday. She asked if we could stay but that wasn't a possibility.

Grace had a bone-age scan of her hand which showed her bone was younger than her real age. Her Endocrinologist said he will call me with his opinion next week.
What does the younger bone age mean???

Grace is also anemic now.

During the big appointment on Friday to discuss all the findings they do wonder if her EEN is causing a problem with her pancreas. Her blood sugar is going to low and they think it's the EEN and being continual tube fed is the problem BUT they all agree she has to stay on it.

Overall I'm very happy and am considering going back but not sure yet.
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Crohn's Disease Forum » Parents of Kids with IBD » The Little Farm Girl, LDN, Full EEN & Mayo Clinic
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