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Crohn's Disease Forum » Parents of Kids with IBD » Update on Clark with EN


02-19-2013, 04:43 PM   #1
EthanClark
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Update on Clark with EN

I wanted to share a happy update on Clark and his last appointment. We started Clark on EN Dec 23rd and have now just hit 8 weeks. We had a follow up appointment Friday with his GI to see how his labs,height and weight were doing. Great news all around! His SED rate went from 68 to 15. It hasn't been even close to this low since he got sick a year ago. The doctors are very estatic. He has gained about 8lbs in the 8 weeks and is starting to look chubby again His energy is through the roof and he hasn't complained of any pains lately.The doctors say that they proboaly wouldn't have seen this good of results had we chosed to do the drugs. As Clark is the first one at this hospital to do EN for treatment of Crohn's I beleive the doctors will recommend it more now do to his success. We couldn't be happier that he is doing so well. Most of his others labs that were abnormal are heading the right direction too. We will continue the EN for 4 more weeks then gradually introduce foods a gain. At that time we will watch to see how he does to decide what to do next. The doctors were hestitant with our no meds approach but now seem very happy to be onboard. We have discussed putting him back on EN if he starts to flare or to look into a G tube if he needs supplementation for the long run. Hopefully he will stay so healthy we won't need it(a mother can dream right?) I wanted to say thank you to all the wonderful parents on this thread for your advice and support. I don't know if we would be where we are at today without the knowledge you have shared. I will continue to keep all your precious children in my thoughts.
02-19-2013, 05:21 PM   #2
Jmrogers4
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What great news, hope it keeps on improving!
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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
02-19-2013, 05:27 PM   #3
Sascot
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Fantastic news
02-19-2013, 05:39 PM   #4
Johnnysmom
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That is great news!!!!!

EN is proven to work to attain remission and I think that is awesome that the GI's in your area are exposed to a healthy treatment that works. Good Job mom!

Studies do show that the symptoms and inflammation return once foods are introduced. It is not meant to be a long term solution. I don't know how many other parents on the forum have chosen no meds but hopefully they are able to share their experiences and give you some advice.

((((((Hugs)))))) and I hope Clark's good health continues!!
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02-19-2013, 06:21 PM   #5
my little penguin
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Hugs
Glad things improved
One thing to keep in mind EEN does put kids in remission but once food is introduced remission rate is typically less than 50%
Additionally going back on EEN does not tend to put kids back into remission as often the second time around.
Please discuss this with your doc
Leaving your child off all meds after introduction of food will permit the inflammation to come back and then he may need high dose pred to get under control again .
If you are trying to avoid pred please discuss med options with your Gi now.

Things that are a given the younger the age the more severe the disease tends to be .
Children tend to have disease that spreads over 10 years.
These two reasons alone are reason enough to try meds and try to kept his disease under control for as long as possible.

I am not a doc but you really need to have a long talk with yours .
This is only my mommy opinion
I would hate. For your lo to have to go through being sick again if he didn't have to.
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02-19-2013, 06:27 PM   #6
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Amazing news!!



Hope he continues to be so well
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02-19-2013, 06:49 PM   #7
upsetmom
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Glad to hear some good news..
02-21-2013, 08:57 PM   #8
CarolinAlaska
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I'm glad it worked so well for him. Another option I've read to retain remission is nighttime enteral nutrition 5 days a week, or total EN one month on and 3 months off. We've been considering all these things as our dd is doing EEN now too. I hope we have such good news in 6 more weeks!
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02-21-2013, 09:40 PM   #9
kimmidwife
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Glad to hear such great news! I know tesscorm's son used only EN for many years hopefully she will be around to give some of her experiences with it. .ike CarolonAlaska said some people have had success with continuing to use partial EN at night. But also as MLP said medication may have to be considered at some point and I would definitly read as much as you can and arm yourself with as much knowledge as you can to discuss with your doctors.
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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.
02-22-2013, 09:20 AM   #10
Tesscorm
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Great news!!! Glad to hear Clark is doing so well!

As Kim mentioned, Stephen has been on only EN as his treatment since diagnosis. He was put on EEN for six weeks to induce remission (May-July 2011) and he did very well, he then continued it as his maintenance treatment at 1/2 dose, 5 nights per week and has continued with this until now.

It has kept him in clinical remission and other than the random day or symptom, he has not had any problems. When diagnosed, he had inflammation in his stomach, duodenum, colon and TI; the inflammation has continued in his TI but has cleared from all other areas (ironic as EN is supposed to be most successful in the small intestine! ). However, as MREs continue to show inflammation in his TI, his GI is strongly recommending remicade. We will be commencing remicade in the next couple of weeks.

EN has been fantastic for Stephen in so many ways - while not eliminating all inflammation, it has kept him stable for almost two years with no meds; as a picky eater, it has significantly reduced my concerns over his diet; and, as he feels and looks so good (and doesn't hear me nag about his diet), he has asked to continue EN while on remicade.

However, keep in mind, Stephen was almost 17 when he was diagnosed and, when he was diagnosed, the GIs did mention that that the younger the patient, the more likely crohns will continue to develop (as MLP said above). I'm not sure what factors affect the progression of crohns (age, size, hormones, etc.) but, prior to becoming sick (and losing weight), Stephen was already 5'10" and 150 lbs, so past the majority of his physical development. I don't know if this was a factor in EN controlling his crohns for so long???

I hate the thought of adding meds and my only regret is that while Stephen was doing well, I didn't push to make any changes... if I could go back, I would push more to try LDN or Pentasa together with EN. At the time, the ped GI said EN was ok and neither LDN nor Pentasa would be effective, as Stephen looked and felt well, I was relieved to add no meds so was happy to accept their recommendation. It is his new adult GI who is adamant that we need to add remicade to avoid the risk of surgery due to chronic inflammation... perhaps a milder drug (even when it didn't seem necessary) together with the EN could have helped avoid the remicade now???

As you mention that Clark is the first to try EN at your hospital, I'll pass along our food reintroduction schedule given to us by the hospital's nutritionist (Stephen's hospital are big supporters and have quite a bit of experience with EN). Food was introduced in stages, with each stage lasting 3-5 days.

1. 'White' foods - bread (any type), pasta, rice, potatos, plain cereal (ie rice krispies but NO milk), plain muffins, etc. He was allowed a very little bit of toppings like strained tomato sauce for pasta, butter or light cream cheese, etc.

2. proteins - any type but I stuck with chicken, eggs, fish

3. fruits/veggies - soft or cooked, no skins, seeds or membranes (skin around orange segments)

4. dairy - low fat

5. all else as tolerated

We were told to always avoid popcorn or corn kernals, seeds (sesame, sunflower, etc., also seeds in berries, tomatos, ets., no multi-grain bread, no seeds on buns, etc.) and pieces of nuts (smooth nut butters are fine). While I strain all tomato sauces at home, I haven't worried about the few seeds that would be on pizza or sauce eaten outside - it hasn't been an problem for Stephen. We were also told to limit veggie/fruit skins.

Hope some of this can help you!
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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

Last edited by Tesscorm; 02-22-2013 at 09:42 AM.
02-22-2013, 06:55 PM   #11
EthanClark
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Thank you all for your advice and support. I truly do appreciate it. I have researched and discussed all the different drugs and options with the doctors already as I have Crohn's disease as well so I knew alot of the options before Clark got sick. I am going to start LDN myself in a few weeks because I will not do the regular drugs anymore. I have chronic bronchitis and am very worried about lowering my immune system any further, plus stritcuring of my bile ducts in liver so I have decided to go the natural medicine route as long as I can. I have thought about LDN for Clark but will cross that bridge when it comes. I want to make sure Clark is as healthy as he can be but I want to start with the less serious treatments first to see if we can get lucky and be one of the few that remission lasts quite some time. I don't believe there is one correct way to treat a disease like this and everyone is just doing what they think is best for their children. I know the drugs they use are the best ones they have for right now but they are far from perfect and I truly hope that I will not have to decide which one to choose.(Trying to dream a little) Again thank you for all your support and I do hope that your children continue to improve and grow!!!!!
02-22-2013, 08:13 PM   #12
Johnnysmom
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I am truly grateful that parents choose so many different options for their kids because it gives us the ability to share and learn from each other. That being said there are no good options or easy choices with this disease. We all just do the best we can.

I am hoping for some much better treatment options by the time our boys are grown.

Please let us know how Clark gets along. I will pray for a long and healthy remission for you both. ((((hugs))))
02-22-2013, 08:56 PM   #13
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I'm kind of jealous but so happy for him.
I think you have a solid plan that has hopes of working.
Just a slight warning, be open to changing plans. Here I am giving pred and EEN together. I'm still in slight disbelief. Still EEN is they way to go for kids I believe and hopefully LDN will be in her future.

I wish you all the best!
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02-28-2013, 10:36 PM   #14
LJS
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I'm new to the boards, but wanted to chime in.. my DS, who will be 9 in 2 weeks, will be doing EN as soon as insurance approves. He's currently on Azathioprine with allopurinal, but cannot achieve clinical remission. Dr was pushing for remicade or humira, but after presenting my son's case to the board at Children's (they meet every Wednesday) they feel EN is the way to go for now.. funny, they do NOT do EEN here at Children's.. they feel that EN through NG tube at night, and eating during the day, is the way to go.. we'll gve it a try..

I did ask about LDN and was pretty much shut down - was told they don't have enough data for it to be accepted here.. aahh!

But great news about Clark!! I hope he continues to improve!

Lin
03-12-2013, 09:57 AM   #15
EthanClark
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We are 2 weeks away from our 12 weeks of EEN with Clark. Our plan is to reintroduce foods and pull the tube at the end of the month. We will keep him on 3 cans of peptamen jr a day and allow any foods he will eat. If he isn't able to drink the peptamen then we will have to either retube him or think about having a G tube placed. I hope he will just drink them. He is still doing amazing and will have blood work done at the end of April to see how he is doing once off EEN. The doctors seem very optomistic that with him staying on partial formula that we will be able to keep him in remission for quite a while. I am sure hoping so as my hubby and I are so damn scared of taking him off the tube and having him get worse again. Keeping my fingers crossed. i will update in another month to let you all know how he is doing.
03-12-2013, 10:01 AM   #16
Farmwife
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Thanks for the update.
I'm so glad about the happy news.
Did your doc offer the g tube ?

We are thinking Grace might (I hope not) have to get a g-tube.
03-12-2013, 10:10 AM   #17
EthanClark
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Farmwife,
Yes he did. He sent us home with a teddy bear that had one sewn into it to get Clark used to the idea in case we have to go that route. He sleeps with it at night I was able to talk to a nice couple in the waiting room before our last appointment. They saw Clarks tube and asked why he had it as there 1 1/2 year old had one for 5 months before they did a G tube. There son doesn't have IBD but has a cyst in his throat which prevents him from eating. They told me how much easier it is with a G tube and they wished they hadn't waited so long to have it done. That made me feel alot better about the idea but it still is a little scary but with Clark starting preschool this year I really don't want him to have to have the tube as kids are curious and I don't want him to develope a complex about it. My hubby is pretty freaked out about it as he does not deal with things as well so hopefully we will not have to go that route but at least the option is there if we need it. I sure hope that whatever you end up doing will help little Grace get better. Good Luck
03-12-2013, 11:13 AM   #18
Farmwife
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Thanks, I hope if we have to get one it's sooner than later.

How is the LDN going for you? Have you thought about that as a back up for Ethan?
03-12-2013, 12:45 PM   #19
EthanClark
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I started out slow per Dr's instructions and have just barely increased to the 4.5mg. I haven't noticed an improvement yet but have been told it can take a while so I am hoping it will do some good as my pain level from both RA and Crohn's has gotted worse lately. I am sure we will try LDN with Clark well before we try the other drugs as it has little side effects. i have had alot of dreams but that is it. I truly am hoping we are just lucky enough that we won't have to make any of those decisions for quite some time. Trying to stay in my little bubble as long as possible.
03-12-2013, 01:16 PM   #20
Jmrogers4
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If I remember right you are not quite a month into LDN? That is about when Jack started to feel worse, lasted about 2 weeks then started feeling well. Hope it is the same for you.
03-12-2013, 01:34 PM   #21
EthanClark
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Thanks.I sure hope so. I feel like I might die today.
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