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11-17-2011, 01:23 PM   #121
Kelly2
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Hey Kim,

Was thinking about you guys today and wondering how everything went with the MRI? Do you have to wait to see the doctor again to get the results?

Kelly
11-17-2011, 09:13 PM   #122
kimmidwife
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We have to wait for a phone call from the doctors, crossing our fingers that it'll be tomorrow.
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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.
11-17-2011, 09:47 PM   #123
Tesscorm
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Hope it's a good call!!
11-17-2011, 10:37 PM   #124
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I hope so too. I also spoke with the doctors about the Remicade and checking the antibodies. He was going to check with our insurance and if they cover it will run the test. They drew the blood at her MRI appt when she had her regular blood work done. Caitlyn said they had a different contrast at the MRI today and it tasted a little worse then usual. She also said the IV contrast made her stomach hurt. Tonight she is feeling very nauseas. I am hoping she will be able to go to school tomorrow.
11-17-2011, 11:36 PM   #125
Kelly2
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Thanks for the update. I sure do hope that you hear back before the weekend - its always frustrating when the weekend comes, and no news and then you have to wait until the following week. I'm so glad to hear that you are having the lab work done to see if Caitlyn has built up antibodies against the Remicade. Without insurance, the cost would be $225 from Prometheus. It really would be a shame to cross Remicade off the list, if it isnt necessary, as it has healed and kept so many others in remission. My daughter was on and off of Remicade for well over 10 years and it really pulled her out of some serious flare ups. In fact, she was one of the 1st pedriatric patients to test drive it back in the day. I sure do hope that Caitlyn feels much better tomorrow.
11-18-2011, 12:16 AM   #126
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Thanks Kelly2!
11-18-2011, 09:07 AM   #127
Tesscorm
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Hope Caitlyn's feeling better. Stephen had an MRE on Monday and felt unwell all evening - nausea, cramps, D, etc. He started to feel a bit better by late evening and was fine by Tuesday morning. Hopefully, Caitlyn's better now too.
11-18-2011, 11:54 AM   #128
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Hi Tesscorm,
Caitlyn is still feeling nauseas and her tummy is hurting as well. She is also feeling very dizzy. Is an MRE the same as an MRI?
ALso does anyone know if quinoa is allowed on the SCD? I am trying to get a good list of the foods allowed. I am trying to avoid buying the book as I bought the other book beat crohn's with EN just a month ago and am trying not to spend to much money right now.
11-18-2011, 08:51 PM   #129
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Posted RE MRE/MRI on your other thread...
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Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
11-19-2011, 12:11 PM   #130
Kelly2
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Kim,

Quinoa would be considered an "illegal" food on the SCD diet as it is 60 percent starch. Here is a complete list of legal and illegal foods for the SCD diet, that I think you will find very helpful.

http://www.breakingtheviciouscycle.i...llegal_a-c.htm
01-11-2012, 11:52 AM   #131
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Well we tried hard for 2 years to stick to EN as primary crohn's treatment...for now 8 year old Ben. but, alas, it has ultimately failed to keep him in remission. Ben was just not tolerating 100% of calories via his g-tube at night, nausea & vomiting episodes every week, so, he was re-scoped and did a pill cam study which shows severe inflammation all over small bowel. BTW - pill cam is still stuck almost 2 weeks later, another thread?

He starts Remicade on Friday no other meds with it to start, so I am very optimistic he will be fine....hopefully much needed relief from crohns..maybe even remission in the near future.

I would recommend folks try EN cuz it did work, well for the first year, and kept him off meds for a year...important when our crohnies are diagnosed so young and face a lifetime of treatment and scary meds. Ben did gain weight and grow several inches during the 2 years...but, it can be a weary protocol, especially if you are a single parent who works full time and have other kids and it kept him in pullups along with diaper rash, and other unpleasant side effects. We look forward to Ben getting out of pullups and growing up some now! I look forward to a low maintenance therapy, easier on us all. Maybe washing his bedding on a much less regular schedule (daily now)...
01-11-2012, 02:30 PM   #132
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Hey ben's m...

I have responded on your other post but will say again....thanks and good luck...

Dusty. xxx
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01-11-2012, 04:12 PM   #133
Tesscorm
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Sorry to hear that he hasn't been well. I hope he moves to remission quickly!!!

Agree, exclusive EN is certainly a worthwhile treatment to induce remission, however, I can't imagine how difficult it must have been for both of you to maintain for such a long time.

Sending wishes that he feels well very soon!
01-13-2012, 06:48 AM   #134
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I know you must be frustrated. But you sound at Peace with the path you are taking. Prayers that Remicade will help him quickly!

J.
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Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
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No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
01-13-2012, 05:40 PM   #135
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Sorry to hear it stopped working for him! Hopefully the remicade will work!
01-28-2012, 08:21 PM   #136
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Interesting EN story I wanted to share:
I met someone the other day whose son has crohns disease. He is now 37 yo and was diagnosed at age 16. After diagnosis he participated in a study being done at the local children's hospital (I think it was in Omaha Nebraska) on EN vs prednisone to induce remission. He was kept on exclusive EN for 6 months. He was also allowed clear liquids such as sprite, water, and Jolly Rancher Candies. AFter the 6 mod he went into remission and has been in remission since then. He does watch his diet but has really not had a flare or problem since then. I think that is amazing and again makes me mad that our doctors did not offer this to us when our daughter was first diagnosed.
01-28-2012, 08:51 PM   #137
DustyKat
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I too don't understand why the US doesn't use EN more in children. I can well understand your disappointment and frustration that this option was never suggested or offered to you.

Dusty.
01-28-2012, 09:31 PM   #138
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I really think if we were told in the beginning it was the best option that it would have been easier for Caitlyn to accept and do it. When we tried it now she was older and not as willing to listen to us being a teenager.
04-06-2014, 07:29 AM   #139
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So after a bad month and even worse weekend my D has decided she can't do this anymore. Her symptoms aren't subsiding, the prednisone taper is making things worse and all she is thinking of is spring is in sight and she can't manage another summer tied inside. She is ready for surgery. When last we visited the doc she mentioned again feeding tube, but kinda put a negative spin on it that her patients don't ask for it, it's not a favorite way of treatment for patients, etc. After our lengthy talks the last few days D is ready to try the EN before surgery. (I want to avoid surgery as much as possible) My questions after reading through the EN forum & this thread are this:

1-Is she wearing this all day except for bed, or only bed? Do you get to chose this or does the doctor decide? Do they put the 'food bag'' in a backpack they wear? or is it put on something they can secure around he waist?

2-I see Tesscom 's son did lots of activities with it. How was the energy level? Besides swimming was their anything he avoided?

3-How hard is it to put in/remove the tube? Can it just be left in 24/7 so she won't have to deal with the awkwardness or pain of removing/putting in the tube? Both D & I are nervous about this part.

4-I was told to get decent results you normally have to stick with this for a minimum of 3 months. What was peoples time doing this?

5-Can it be removed for special occasions? D is having her 8th grade graduation & is concerned with being the kid in all the pics with a tube.

6- Is there something you wish you could have done differently in this process? Any tips to start out?
Thanks for any feedback!
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Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
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04-06-2014, 07:41 AM   #140
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I'll tag in Clash as her son has started this and is older.

I'm not much help. Grace was four and had her n-g tube for four months and then has a g-tube permanently place. It's definitely worth it for us.

Your poor girl. Hugs to you both.
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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
04-06-2014, 08:58 AM   #141
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C has been doing EN with a ng tube for several weeks now. The parents on crohnsforum have been invaluable during this process. First, I guess I need to say C has not been doing exclusive enteral nutrition, his has been 90/10%(90% EN/10% food).

1. C put his in around 5pm and takes it out in the morning when he started out. How long it takes the feed is dependent on the speed at which he sets the pump. He has now worked up to a speed that allows him to put it in later in the evening and take it out in the morning. Also, he doesn't always take it out, he will sometimes leave it in and just flush it if he had nothing planned. You can get a backpack if you so desire, not sure if you purchase or the ins company does. We have an iv pole that was delivered with all the supplies but he has fitted one of his old backpacks with the equipment when we have traveled.

2. Since C takes his out and I believe Tesscorm's son did too then there are no restrictions, I can't speak to energy levels since C also deals with a form of arthritis that can zap his energy but he does swim therapy for the arthritis. One of the main reasons C was placed on EN was due to an inability to gain weight. The day before EN was started he weighed 111 lbs on our scales at home this past Friday he weighed 126 lbs so it has been great for his weight.

3. In the beginning, we had a lot of issues with putting the tube in. This was due to the fact that the dme company was sending a larger tube(8FR) and the tubes also had no stylet(guide wire). Thanks to the parents on the forum I found the right size(6FR) and knew to order with stylet. Since then it takes C no time to replace the tube(seconds for actual placement) and there is absolutely no pain.

4. C will have his in on 90% for at least 8 weeks then he will either continue 90% for 4 more weeks or gear down to maintenance which will be a lot less than 90% bit used to help him maintain weight gain.

5. In C's case he removes all the time so it would be a yes for removal for special occasions, in fact prom is next weekend and he will switch feeding times to ensure he gets all of his formula but will take it out for the day and evening for prom.

6. I wish I had known about the tubes with stylets, they are so much easier than those without. In the beginning, he would swallow water to get past the gag reflex and that helped a lot, now he doesn't have to. Also , keeping his chin to his chest helped keep the tube heading in the right direction. Due to the issues with not having tubes with stylets we had a few rough days and I am so grateful that all the knowledgeable parents on here guided us during that time. Now it really is no big deal for him to remove and place. I do notice that he will just leave in and flush during the week a lot since he attends a flex school that allows for independent study.

I hope some of this helped. I'm sure Tesscorm will be by as well and truly once you get the hang of it all it isn't a task to be dreaded at all. Good luck.
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
04-06-2014, 09:18 AM   #142
my little penguin
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One other option is drinking it orally.
DS absolutely hated the taste but really did not want a tube.
He drinks peptamen jr .
I know jmrogers son drinks peptide jr.
It took over 2 hours for him to drink the first one.

A rough couple of days then he was fine.
He did 100% EEN no food and now continue on maintence of two to three a day.
Some kids have used kids boost or pediasure without a tube -crohnsinct kiddo

Good luck
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04-06-2014, 09:42 AM   #143
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We have done the oral method to massive failure. Taste is a big issue. D has been on modulen orally and couldn't keep it up during time at home away from the hospital. This is why the doc mentioned the tube. That, and me mentioning Tesscom's son doing it with success.

D is now down 9 lbs since beginning of February when in the hospital. Weight is a big issue. She is already marked as 'fail to thrive' in her chart as she has not grown at all since all of this. 2 years and no growth at this age are big red flags. This is almost her last growth period. I am very concerned. The decision of EN is not a light one for us, but more the thought that nothing is working and we need to consider all options. This I think maybe we should have done a while ago.
04-06-2014, 10:22 AM   #144
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My son hated the taste so had the NG tube for 8 weeks. He kept it in for the full time - both of us were quite relieved not to worry about putting it in again! Energy levels were quite good while on EN and he continued sports throughout. He went to high school with the tube attached o his cheek and was fine. No one teased him and he seemed okay.
I "fed" him at mealtimes with the formula, we didn't have a pump or anything going at night.
Good luck, I definitely think it's worth it
04-06-2014, 10:38 AM   #145
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My son also used a NG tube that he inserted every evening and removed every morning. He was 10 years old when he did it. I too was very anxious about the inserting of the NG tube but somehow my son wasn't and approached the whole thing as if he was learning a fun (think 10 year old boy humor) party trick. He spent 1 hour with the GI nurses learning how to insert the tube and they just talked him through it and got him to do it himself the very first time. It was such a non issue for him I couldn't believe it. For him the hardest part was finding where the tube has to take a turn at the back of the nose. It wasn't painful but just took a bit of fiddling to find the right spot. In about 5 days he could insert the tube with absolutely no help from anyone in 12 seconds flat (he made me time him). If I told him right now he had a choice between a course of prednisone or EN via an NG tube he would choose EN without hesitation. My son is such a picky eater he would find drinking the shakes a much bigger problem than inserting the NG tube.

My son also used a 6Fr size tube but we took the guide wire out before inserting it. This was just part of the instructions that the nurses gave us from the beginning and we didn't question it as it all worked out so well. We also used some lidocane gel (the kind you can use for teething babies) on the end of the tube and he would kind of snort it up his nose just before inserting the tube. He used the gel for about the first week and then he decided that he didn't need it.

When my son was on EN he was very underweight and it was a HUGE relief for me to know that he was getting the right amount of nutrition. It was so much easier than nagging him to eat more all the time.

If your daughter is up for it have her do the inserting of the tube, even the first time, rather than someone else. I think that it is much better for the person getting the tube inserted to do the inserting as they can feel when to stop pushing and where to adjust the placement of the tube etc. If someone else is inserting the tube there is inevitably a bit of blind pushing around of the tube which I think must be uncomfortable.

Lastly my son did EEN for 8 weeks. He was allowed clear fluids (pop, broth, apple juice) and a small amount of hard clear candies (lifesavers) and gummy bears.

Good luck. I hope it all goes well!
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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.
04-06-2014, 03:31 PM   #146
crohnsinct
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Hey supportivmom,

I am so sorry that D is having such a rough time of it. I am a big advocate for EEN for achieving remission and for supplemental nutrition for weight gain and growth. However, I think the most important thing for D right now is probably getting her to remission. Once you get inflammation under control whether with drugs or EEN she will absorb more nutrition and the growth/weight gain will follow. EEN has an excellent success rate at at achieving remission and mucosal healing but once EEN is discontinued it is usually just a matter of time before the disease creeps back in. Some supplemental EN has shown some success at extended the remission period but most kids find they eventually need some maintenance meds. My daughter was having a hard time achieving remission on Remicade and with steroids because every time we tapered the steroids the disease kicked up a notch. We introduced EEN to help the Remicade along and it did just that but she stayed on Remi the whole time. Maybe just maybe D is the same and Humira just needs a little boost.

FWIW O did 8 weeks EEN then transitioned slowly to food.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
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Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
04-06-2014, 03:58 PM   #147
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Thanks CT.

I know we are in trouble when D starts giving up or willing to consider things previously turned down by her. EN has to be a better way. Tess spoke so highly of it for her son. The meds just don't seem to be enough for D and I don't think uping meds are the answer anymore. Almost 2 years and we still aren't at a manageable state. EN seems like such a natural way of treating things and maybe we should have done this a long time ago. I have to they this before I let them do surgery on her. I will kick myself if I don't look at all options before surgery.

I'm headed off to the local crohn's chapter meeting now and am looking forward to hearing some adults take too.

How long was your daughter on EEN cct?

04-06-2014, 05:24 PM   #148
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We did 8 weeks of EEN, this last fall and 6 weeks of supplemental about a year ago to try and get weight up. I'm a huge fan of it and I think whatever delivery method will work. Jack chose to drink the formula and I will say the negative to that is you really have to be on a schedule to get them all in. Jack was never hungry so he wouldn't think about them. If he slept in then we were behind the ball to get them all in, kwim. He needed 8-9 a day so it was roughly 1 every 2 hours and they needed to be cold so going anywhere you needed to plan how many do we need to bring.
He did go to his first school formal dance while on EEN dinner was interesting but he had a great time and we made it work.
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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
04-06-2014, 05:50 PM   #149
crohnsinct
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Same as above. 8 weeks EEN then a slow reintro to food. She wasn't allowed anything but water during the exclusive period. Oh wait...allowed to chew one piece of gum a day. She drank Boost and Ensure and they worked. Our doc chooses to try the most palatable formulas orally first and if they don't work he goes down the line to semi elemental and elemental but as you go to the less palatable there is a higher chance you have to use the tube. Boost and Ensure worked for O.

She did hers around the same time and there were bat and baz mitvahs galore and she walked in with her little cooler of shakes. The class took a cruise at the end of 8th grade and we sent a case of shakes. Cousin got married and shakes went to. She drank 10 a day because of her activity level.
04-06-2014, 06:20 PM   #150
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I'm on my phone now so will keep it short but everyone abv has pretty much said all I'd say. S inserted his tube nightly and after just a few days, it was no issue at all. Given the choice, he would also probably still prefer the tube trust her than drinking that same volume orally. His energy level was great - he started back with 2+ hours/day of fitness and phys ed classes plus two hockey teams within 2-3 weeks (although it took longer to regain his pre-sick stamina and muscle). And as clash's son, adjusted his schedule or pump speed to work with his schedule. I'll try to get on the computer ltr if u hv more questions.
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