Here's a tough one...

My 8yo daughter, dx 12/2011, doesn't show the normal symptoms but has crohn's. She doesn't BM everyday, no blood in stool right now, all tests are normal, nutrition levels normal. She takes Imuran and levels are therapeutic since May 2012. However, she doesn't eat enough. Her growth is down and her weight is down. She had an endoscopy and colonoscopy on 7.9.12 and swallowed the capsule with the camera that transmits pictures regularly as it moves through the small intestines (way cool). The results showed mild inflamation. The doc said things look so much better than they did in December when she was hospitalized for 12 days (severe case). However, we've been fighting the eating thing for months and the doc is suggesting a change in medication based only on weight loss.

We can do a lateral move to methotrexate (6 week trial) or we can escalate to remicade. I am at a loss. I'm going to ask about LDN, but I suspect the doc will not like that idea.

Does anyone have a child with similar non-traditional symptoms? Has your experience with Imuran reduced your child's appetite? Does Imuran make food taste funny?

Anyone think the mild inflamation could be left over from December?

Thanks for letting me join your community!

Nina's Mom
dx 12/11
Flinstones w/calcium no iron
Imuran .75 alternating .5
culterelle
epipen, because to top it off she's allergic to whey protein (milk)

Have you heard about EN (enteral nutrition)? It's a liquid supplements
I know more will be along to describe it.
Sorry, have to get to bed.
Kids don't care at 7 in the morning if mommy is tired. lol

Nina's mom
I would definitely look into enteral nutrition and Ldn for her! There is a lot of info on both on the site.

Yes, have a look at the information on Enteral Nutrition - it is a nutritional formula that, as far as I know, can be given together with meds with no conflict. There are no side effects, it provides necessary nutrition, is easily absorbed/digested and has as high a success rate at inducing remission as steroids. It is often used around the world as a first treatment for children but, for some reason, is not as commonly used in the U.S.

I've posted links for you for the Enteral Nutrition subforum and a thread 'Kids on EN' on the Parents with kids w/IBD forum.

http://www.crohnsforum.com/forumdisplay.php?f=161

http://www.crohnsforum.com/showthread.php?t=36345

I'm sure it will help with her weight issues.

I would also suggest EN supplementation to see if you can get her all the way into remission.

I beg off on LDN - don't know enough to have an opinion. Have "met" online a few parents who have tried it with their kids with short term but not long term success. I can say no one said there were serious side effects.

My son doesn't have traditional presentation in terms of diarrhea and weight loss. He did have significant growth delays - was down to the 11% from the 50% by the time of diagnosis. He has constipation, bloody stools, perianal disease.

We did EN twice after he was diagnosed at 10. It helped but not enough. We had to move up to Humira and 6-MP after 6-MP wasn't enough. Then we switched him to Methotrexate with Humira. He was in solid remission for a couple years and then stopped the Humira but continued the MTX.

It's been 2 years since he stopped Humira and he's been doing really well until the last 2 months. Despite the fact that he looks fine and his labs are good he is flaring now.

We know because he had 3 bloody stools, a couple episodes of belly pain and has a small painless fissure. Doesn't sound like much but we know he doesn't look sick physically or in labs until he is really sick.

His GI ordered an MRE and sure enough it showed enlarged lymph nodes, inflammation in the TI and lower colon.

Based on our experiences, I would say that your daughter is in partial but not full remission. Any inflammation is not good and will keep her from growing. The fact that she is losing weight suggests to me that she's getting worse not better. Yes she is much much better than she was - but that isn't good enough with pediatric Crohn's. That is why your doctor is wanting to change her meds. The weight loss and lack of growth, combined with the severity of her illness on diagnosis, make him suspect she needs something added or changed. He does NOT want her to get that sick ever again so he is being pro-active.

The problem with even mild inflammation is that prolonged inflammation leads to changes that foster things like scarring, fistulas and abscesses. Scarring can only be removed surgically (it's also call stricturing). Fistulas are tracks between parts of the body - in this case between sections of intestines, between the intestines and the skin, the intestines and the vagina or perianal area. Abscesses are infections that can be hard to diagnose until you are really sick and can burst causing really bad things to happen like emergency surgery.

So try the EN if she will drink it. I doubt that your insurance will cover it unless her weight is very low (5% or less). The other way to do it is via NG tube but you really have to have her doc on board with that and the insurance may still refuse coverage. It really is a very good bridge and may help get her the rest of the way into remission. It doesn't work for everyone but if it helps you should know within a couple of weeks if she drinks enough.

If you want more info and help on EN I suggest you start a new post with that in the title so it's easy for people to respond who have experience with EN. And of course follow the links that Tesscorm provided in her post.

There have been several threads recently that discuss the pros and cons of medications like Imuran and Remicade. Here's a link to one that you may find helpful:

http://www.crohnsforum.com/showthread.php?t=39231

Hang in there mom. The first couple years after diagnosis are often the worst because finding the right combination of treatment is trial and error process.

Hi, as everyone above has mentioned it would be a good idea to try the EN. If her body tolerates the Imuran it seems a shame to change it and risk other side effects. The EN is side effect free . Maybe your daughter can use it as a supplement just to help increase her weight rather than the exclusive EN, although if she could tolerate it then it would do wonders for the inflammation! Good luck whatever decision you and the docs make!

Hi Nina's mom & welcome. Seems like everyone agrees that somehow geting more nutrition into Nina seems best. Sascot's suggestion sounds good. If she is tolerating food, butnot eating enough, you should be able to supplement with the tastier nutrition drinks like Ensure, etc. Some of the really basic EN drinks taste awful according to my son.
Good luck!!

Thanks for the information! We tried 1 supplement without success because of the horrible taste. It is really hard to find supplements without whey protein. I did find the following site and may have to make my own

allthingsveganized.blogspot.com

There is a sub category called 'vegan tube feeding' and it lists a few options and a recipe.

Patricia56, I feel much better knowing that we are not alone in the symptoms category. Thank you for sharing.

Just thought I'd share my experience but... keeping in mind my son was older than your daughter when he began EN (16, at the time) but, from the beginning, he has used an NG tube and ingested the formula overnight.

I can honestly say that it has been very easy for him... he had two or three sessions with a nurse to learn to insert the tube, was 'comfortable' doing it on his own within a day or two and, within a week, found it VERY easy. At this point, after a year, it literally takes him about 5 seconds to insert (removal is very easy).

Also, he's very picky with foods/drinks - I truly do not know if he would have been able to follow EN (either with or without food) if he'd had to drink multiple shakes per day, even if he was able to follow through, it would have been much, much more difficult for him.

Convenience-wise, he has no concerns that he HAS to fit in 3 or 4 shakes per day (or more!), all the formula is ingested overnight, while he's sleeping.

Unfortunately, the NG tube doesn't work for everyone - I can certainly imagine it would be more difficult to convince a younger child to try and I have read of some who find the tube irritates their nose, throats, etc.

But, just thought I'd make the suggestion, it might be something your daughter is willing to try... :ghug:

(Another benefit is that he has taken his tube with him for MRE's to ingest the 'drink' that way )

I will post a new thread asking for suggestions on getting your kid to drink EN supplements.

I'm sure you will get lots of advice.

I start new threads in my posts when the subject of a thread drifts too far from the original subject or there's an obvious reason to start a new one - like this.

It makes me crazy to try to follow threads that have grown to hundreds of posts long because no one started a new thread. Just my little pet peeve.

Sounds familiar, we were on Imuran for 3 years with sounds like pretty much the same outcome as you. He just wouldn't eat, just small amounts and said he was full. He gained a pound and grew an inch in about a years time. My son's doctor suggested LDN we have only been on it a month but so far so good. We did switch his diet to a modified Paleo/SCD basically picked out things he would eat like meat, fruit and veggies but still let him have ketchup (I don't know if he would eat the meat otherwise) I can say he is eating more than I have seen him eat in a long time. Whether it is the medicine or the diet change I don't know. He goes back to Dr. in October for labs to see how he is progressing. Looks pretty good from the outside at least to me

I just anted to pop in and say welcome and hi. You will see our story in the EN thread but I wanted to also encourage a go at it. THere are a few different flavors on the market shelves (of Boost and Ensure - they are more palatable in shake form than the others although not as easily absorbed as the real yucky ones). FWIW our doc feels EN will heal inflammation only if it is used exclusively (no other food or drink other than water) for a period of 6 to 12 weeks. Our daughter achieved good impovements in her blood results within 6 weeks! She was also on Remicade and continues on Remicade as te doc said EN does not work as well for maintenance. We are planning to cycle on and off as needed to help the Remicade along.

Bright beginnings soy drink is whey free.
Otherwise
There is e028 splash which is elemental.
Are you avoiding whey for a milk allergy or just preference?
Peptamen jr has whey but not whole proteins so very different from milk.
It has elemental peptide chains.
So only requires the first few inches of the intestine to be absorbed.
It has more than a few studies on it.
Insurance will pay for it sometimes if you order through your durable medical equipment clause. My kiddo was 75% for weight and dropped to 25% and it is covered for us.

We are avoiding whey protein because of the milk allergy. It's not lactose intollerance it is anaphylaxis. I'm checking into bright beginnings. We tried pedia smart soy version.

Hi Nina's Mom and :welcome:

I'm so sorry to hear about your girl, bless her...:hug:

I don't have anything to add to the fab advice you have already been given but did want you to know that my kids never had 'classic' symptoms either, so you certainly aren't alone there!

I hope you are able to get her inflammation under control ASAP! Good luck!

It makes me crazy to try to follow threads that have grown to hundreds of posts long because no one started a new thread.

Click to expand...

Yikes! Don't look at some of my threads! :lol:

Dusty. xxx

I called the nurse Friday morning to talk about LDN as an option for Nina. She thought I was asking about EN and told me a story about one of her patients that has done EN for 5 years with no medication and kept his Crohn's in remission. He has the g-tube and when he starts to feel a flare coming on he ups the amount of EN and reduces regular food intake.

I explained I was really interested in LDN so she said she would ask the doctor, but I don't expect the doctor will be on board with it.

We are starting the paperwork for remicade. Although many hours reading makes me wish we had tried SCD while on the imuran.

DustyKat said:

Yikes! Don't look at some of my threads! :lol:

Dusty. xxx

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haha...I rather like the long threads...this way I can follow a perso's journey from beginning to end and see everything they have tried without having to jump around the forum...just persona; preference I guess and more proof you can't please everyone all the time:ybiggrin:

crohnsinct said:

haha...I rather like the long threads...this way I can follow a perso's journey from beginning to end and see everything they have tried without having to jump around the forum...just persona; preference I guess and more proof you can't please everyone all the time:ybiggrin:

Click to expand...

i agree...it is even nice to double check your OWN history lol! I often refer to crohns forum to double check something that we did with Izz...it would be easier if i had left it all in the same thread...

ItTakesGuts said:

I explained I was really interested in LDN so she said she would ask the doctor, but I don't expect the doctor will be on board with it.

Click to expand...

I also I'm looking into LDN. Just in case Grace does get a dx of IBD.
I looked on here and found that a study and medical paper was written by some doctor. I thought of printing that up and presenting that to the GI to give proof that LDN does work even though he has not heard of it. I don't know if it would work but I could try. Something you might want to try.


DustyKat, crohnsinct and izz's mom,
My goal is to get 10,000 hits from people on my thread:thumright: and then I'll think about a new one.:ybiggrin:
Maybe call it ......Update on Farm Girl Pt. 2. Like it?:ytongue:

OMGosh Angie! I have done the same thing!!! My ped asked me when something was done and I couldn't for the life of me remember...enter Iphone and search and voila...Of course if I actually kept copious notes and updated in a log book and carried it around with me wherever I go that would have helped but like I said, I am still new and evolving...some day I will learn but for now just as easy to bore you guys with all the details so I have my log

Farmwife...LMAO!

Okay...since we are confessing, :ybiggrin:....

Well you know how I get on my soapbox and preach about documenting everything, I know hard to believe! :lol:...well if you have ever read Matt's thread you may pick up on the fact that it is my diary! :eek2: :ylol:

You all are too funny!

This forum does make a good diary. Ha, ha!