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Crohn's Disease Forum » Parents of Kids with IBD » New to Forum, newly diagnosed 13 year old - J's story


 
01-24-2013, 03:35 AM   #1
CarolinAlaska
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New to Forum, newly diagnosed 13 year old - J's story

Hi. I'm mom to J, who is 13 and just diagnosed with Crohn's.

She has had issues since infancy - diagnosed with failure to thrive in childhood and never really became healthy since. Never had a colonoscopy until last month although they did do a workup then and said she "was a petite girl with big parents". In her early childhood she had chronic diarrhea and abdominal pain after meals - had her bent over a chair during meals holding her stomach. At age 4 she developed seizures (I think now may have been result of malnutrition). Seizure meds were a nightmare (another story). I found that gluten-insensitivity could cause seizures at about age 6 so we went on a gluten free diet. This was a miracle for us as she stopped having so much abdominal pain and diarrhea. (Her celiac tests were always negative). She's always sat at about the 5th % for weight since she dropped from 50th % at birth in infancy. Gluten free diet didn't do everything, but helped so much and has off and on gotten us off the seizure meds which make her GI problems worse. Currently she's been seizure free since 2010 and off meds since last August.

Last April I noticed that she was not going into puberty at all and took her to a peds endocrinologist again (she saw one in infancy for her failure to thrive). She did a workup for her and found that she was pubertally delayed and growth delayed and less than 1 % for weight and height had dropped to less 25th % (had been 50 % for many years). I told her J's story and she gave her 6 months to grow. No changes in that time, but I told her in followup that I thought it had to do with J's GI problems. She asked about joint problems, and at that time she had been complaining of knee pain and other joint problems. She got a sed rate and found it to be high. She immediately thought of Crohn's/IBD and sent her to peds GI.

In December we saw the peds GI doc and had colonoscopy, MR endoscopy, upper endoscopy and 9 days later capsule endoscopy. (That's a lot of prep in a 10 day period to be sure!). The endoscopies showed one small area of her colon that was inflamed. She took 17 biopsies throughout her GI tract (but couldn't see in small bowel) and only that one small area showed anything abnormal (inflammation possibly due to bacterial infection or early Crohn's). 9 days later the capsule endoscopy showed ulcers throughout her colon and inflammation throughout her small bowel. GI doc thinks it is Crohn's and wants to start her on prednisone.

My biggest concern is that J's main problem is not diarrhea or pain for the most part but lack of appetite and failure to gain weight. Fortunately, she is now finally starting puberty. Over the past month while waiting for results we have been pushing Ensure (2-3 cans a day) and going with a completely gluten-free diet. For the past 3-4 days she has been pain free, diarrhea free and this month has gained 2 lbs (as well as started puberty). She is only 70 lbs. I don't know about prednisone followed by these heavy duty meds. Is it really necessary? Isn't the treatment worse than the disease in her case? I think I am leaning toward asking the GI doc if we can try to continue the diet and Ensure for awhile to see how she does, or go on total enteral nutrition as an alternative. I think at one point she was open to this.

Does anyone have a story of a child similar to ours that doesn't have severe Crohn's, no bloody diarrhea, pain controlled with diet and Ensure or similar, who did well without the big gun meds? I really need some support, and really appreciate the support I've seen for others who have posted.

Thanks,
Carol
01-24-2013, 03:47 AM   #2
Catherine
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Welcome to forum, sorry you had to find us.

I know from the forum that EN is standard first treatment in a number of countries.

I personally haven't experience with it but there are many parents here who have. I'm sure they will be long shortly.
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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)
01-24-2013, 04:15 AM   #3
Hope345
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Hi and welcome to the forum. Our daughters story is different, but they are about the same age.

The discovery that stands out with your daughter is the ulcers and inflammation. If you believe that the ensure is actually reducing the inflammation, then there is no need for Prednisone. It is so good that she is starting to gain weight.

Even though she does not have the diarrhea and blood, she sounds like she is in a severe flare, and may have been for a lwhile. It is good that she is not in any pain.

The Prednisone, is not something we liked giving to our daughter either, but to get her inflammation down quickly, we knew Prednisone was our best option. It is only a short term medication, to help while other meds start working.

The blood tests should also show if your daughter is still in a flare. At least they are a helpful tool to consider.

All treatment is your decision. Our daughter was bleeding, and pain had started. She has never had diarrhea, but we knew we needed to take on the medications to get in under control

I wish you and your daughter the very best. If I can help in any way, let me know. Our daughter is baylee and she is 14. After a year, she is doing well.

take care
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Daughter (age 17) diagnosed with Crohns Colitis/UC 1/2012 Mod/severe changed to U.C.: 11/7/2014 anemia:blood transfusion current: Flare, weaning from Prednisone, still bloating: Meds ,Pentesa: 2000mg twice daily, Vegan diet, mesalamine enemas .Previous: mercaptopurine, Remicade (13 treatments), Imuran, prednisone ), Flagyl, iron infusions, cortifoam,
Continue to be hopeful
Daughter: age 21, undiagnosed: GI issues
01-24-2013, 04:52 AM   #4
Patricia56
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Welcome to the forum. I am glad your daughter was finally diagnosed. It sounds like she may have been sick for a long time.

So I will do my best to break this to you gently but it does not sound to me like she has a "mild" case of Crohn's.

Those cases do exist but they do not present the way you are describing.

Significant growth delay generally automatically places a child in the moderate to severe disease level. Because for there to be such severe signs of malnutrition (1% for weight) she has/had significant small intestine inflammation for a long time.

Finding very little inflammation in the colon is good.

Finding ulcerations and inflammation throughout the small bowel is bad.

The problem with Crohn's is that it can become very bad very fast with lots of drama to tell you what's going on. Big bad numbers in the labwork, lots of pain, blood, etc.

Or it can appear to be gone, cured, in remission only to show up as fistulas and abscesses or perianal/vaginal disease. And near perfect labs.

Sometimes everything seems fine and the next day you are in ER waiting for emergency surgery for an obstruction or perforation.

My point is not so much to scare you as to help you understand that this disease is unpredictable and the worst case scenario, while unusual, is really bad and to be avoided if at all possible.

There are two options to talk over with your doctor as alternatives to prednisone. But your daughter may really need prednisone so I suggest that you don't completely rule it out at this point.

1. Exclusive enteral nutrition - you are already half way there and you are right to think it is probably why she is doing so much better. EEN may get her all the way to remission or at least to the point where she is nutritionally and medically really stable. But. Unless she wants to stay on it for forever she is going to need maintenance medication of some kind and it's usually best to start maintenance meds while she's on EEN.

2. Budesonide - this is also a steroid; it is taken orally but it is topical - coats the inside of the gut - and only 20% or less is absorbed into the body so there are far fewer side effects. But it can be very effective in suppressing inflammation in the gut. Provided the inflammation is located where the medicine releases. This is something you will need to talk to the doc about since she knows where your daughter's inflammation is the worst.

3. Actually you can do both EEN and Budesonide together.

Prednisone is incredibly powerful and is a life-saving medication. Doctors generally do not use it lightly especially in kids because it suppresses growth among other things. You can shoot for as low a dose as the doc will do (usually not lower than 20 mg, most start at 40 mg) and a definite plan to wean her - which is the part that takes forever. If the doctor feels strongly about using prednisone here are some things to know/talk over with doc.

Important factors to be considered include:
  • strong family history of diabetes - prednisone can cause diabetes which may or may not go away after stopping the pred
  • strong family history of mood disorders - even "normal" people w/o this can flip out on pred and require psychiatric hospitalization although it's rare. Most people get moody and difficult. If there's a strong family history of mood disorders then you are almost certainly risking triggering significant mental health problems and do NOT let the GI tell you otherwise.
  • history of frequent, persistent or unusual infections - could indicate an underlying immune deficiency. Pred makes you more vulnerable to infection so it's important to know this.
  • history of fractures - pred weakens kids bones, not fast but it does. Given her nutritional history and weight she may already have osteoporosis. If she has a history of fractures that may also argue against prednisone if there are alternatives.
Ideally she should have a DXA scan done before or soon after starting steroids to check her bone density.

Take a breath. It's an enormous amount of information to take in at the same time you are grieving the diagnosis and feeling anxious about all the unknowns.

We'll be here to help you through it.
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Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
01-24-2013, 05:42 AM   #5
Dexky
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Welcome Carol!

Wow, you rock Patricia!

I can only add our experience. My 13 yr old son has had two pred tapers in the last 3 years and other than the typical moon-face(that soon disappears) and the drive you up the wall energy they get from it, we've had good results both times. Our GI is not a fan of EEN but many on here are.

I wish you all the best! Are you near your ped GI? I know Alaska tends to be a little stretched out to say the least!
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01-24-2013, 11:47 AM   #6
CarolinAlaska
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Julie/Patricia, how can you say she is in a severe flare and has been for a while if 16/17 biopsies show no disease even after a lifetime of her problems? We just got some bloodwork yesterday so maybe the sed rate will help show us. What other blood work do you all do that helps to know whether she is in a "severe" flare? What are the goals of the meds? Weight gain, being able to eat, not having pain? How do you assess this? If she's had this all her life, why hasn't she had the bad things that people describe that goes along with this? (ie fistulas, abscesses, blockage, etc?). I agree that it isn't good that she isn't growing and that she is malnourished. If by diet we can get rid of the inflammation and help increase her appetite, isn't that good enough?

Mark, we live 3 hours from Anchorage where our peds GI is.

On a good note, we have a nutritionist who is well versed in Crohn's that we just met yesterday and that is giving me hope that we have alternatives. I will consider the budesonide. My peds GI suggested that too.

Thanks for all the good information. I will keep praying and processing.


Carol
01-24-2013, 12:10 PM   #7
Hope345
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Carol,
When you indicated that, "9 days later the capsule endoscopy showed ulcers throughout her colon and inflammation throughout her small bowel. GI doc thinks it is Crohn's and wants to start her on prednisone. " is what indicates a severe flare. A lot of people with Crohns dont bleed, and some dont have diarrhea.

It is the small intestines that is responsible for nutrition intake. It sounds like your nutritionist is going to be a big help to you.

There is so much to process, and talking with her doctor and reading will give you even more information. With Crohns, the most important part, is getting rid of the inflammation because it can cause harm to the intestines,colon

I know there is so much information coming your way. You are doing such a good job getting all the help you need to help your daughter. I wish you the VERY best. prayers for you both.
julie
.
01-24-2013, 12:22 PM   #8
jmckinley
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Welcome Carol! Sorry that you had to find us but it's a great place to be for info and support.

My son has Crohn's but does not have prolific diarrhea. He is 15. His symptoms are more failure to absorb/gain weight, abdominal pain, some blood and loose stool/some constipation, pale, tired and cranky and emotional. The worst for us is the weight. He is 5'6" and 108...nothing but bones.

We tried diet, but that hasn't solely controlled it. He took prednisone then 6mp for 2 years with great success. That stopped working then we went remicade-failed, methotrexate shots are working now, but not beautifully.

I think you are on the right track with the EN idea. Many people say the EN works as well as steroids. If the GI will postpone the steroids, just be sure to check bloodwork often. Crohn's activity can be silent, but the inflammation and ulcers are in there causing damage that will hurt her in the long run. So just because she looks better doesn't mean that she is better. That's what happened to us with diet. He felt better, but inside it was a volcano. Never again. The more you let it fester, the more it increases the chances they will have surgery in the future.

I hope the EN/diet works and you can get her crohn's under control without meds. That would be awesome! Let us know how it's going.
01-24-2013, 12:36 PM   #9
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Welcome to the forum, Carol.

My son's story is similar to jmckinley, no prolific D, failure to absorb/gain weight, very little to no blood, constipation etc. He is 16, 5'6" and 113 so really skinny and it could be stunting his growth.

EN has studies behind it that show that it can be as effective as pred at quelling the inflammation. Supplementing with formula can also ensure they are getting the nutrition and calorie intake they need.

Hope it all improves for you little one.
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
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PAST MEDS: remicade, oral mtx, humira
01-24-2013, 12:42 PM   #10
CarolinAlaska
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Julie and J,

Thanks for the encouragement. Julie, I guess my thought is that the ulcers were perhaps the biopsy sites, and couldn't the 2 preps in 9 days make it look like inflammation/irritate the bowels? The endoscopy did not show it nor did the biopsies.

What I am accepting is that she does have extensive disease in her small bowel. That is why we did the capsule endoscopy and that is now what we know. I think that I am going to have to try the nutritional route, because it seems so much more healthy and less risky. I spoke to her pediatrician this morning, and she is on board with me. We will do q 2 week weight checks.

J had some blood work yesterday. Her CRP is < 0.5 and her ESR is 11. Her AST is mildly elevated at 29 (I think it has been up to 39 in past). No CBC done, but she's never shown anemia even at her worst. Her B12 is 674 without supplementation (other than her daily vitamins and Ensure).

Do any of you wish you hadn't gone to prednisone/meds so quickly? Anyone hem and haw like me wish you had?
01-24-2013, 12:44 PM   #11
Farmwife
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Hi and welcome,
Same here for Grace. No D, little blood. She also has absorption problems. She's on EN and I swear by it. For the first time she's getting all she needs. My girl is 4 and also has had issues since birth. I hope all goes well.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
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dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
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Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
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01-24-2013, 12:46 PM   #12
CarolinAlaska
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Does anyone know a good goal for weight gain/growth? 2 lbs a month? 4 lbs a month? 1 inch/month?
01-24-2013, 12:49 PM   #13
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Biopsies can be very hit and miss. Doctors try to grab them from likely looking places, but the patchy nature of Crohn's makes every biopsy site sort of a coin flip. The visually noted pathology is plenty, as others have said, to diagnose a severe IBD, with Crohn's being likely due to the location, quality, and severity of the inflammation.

It's great that enteral nutrition is working for her, and you should continue it, but it would be a very bad mistake to rule out effective maintenance drug therapy only to find that her disease has been quietly worsening while you tried to avoid rare and unlikely side effects of this or that medication. remission is a thing to be nailed down and clung to, not taken for granted.
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01-24-2013, 01:03 PM   #14
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If you do try the nutritional path you might want to have a look through our Diets Forum(<---click here) as there are a variety of diets and supplements members have utilized and posted their experience with. I think the parent, Charleigh of a little boy, E, I think, has thread with her son's experience with one of the diets.
01-24-2013, 01:04 PM   #15
CarolinAlaska
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Biopsies can be very hit and miss. Doctors try to grab them from likely looking places, but the patchy nature of Crohn's makes every biopsy site sort of a coin flip. The visually noted pathology is plenty, as others have said, to diagnose a severe IBD, with Crohn's being likely due to the location, quality, and severity of the inflammation.

It's great that enteral nutrition is working for her, and you should continue it, but it would be a very bad mistake to rule out effective maintenance drug therapy only to find that her disease has been quietly worsening while you tried to avoid rare and unlikely side effects of this or that medication. remission is a thing to be nailed down and clung to, not taken for granted.
Yes, I agree. But are meds the only way to achieve this?
01-24-2013, 01:10 PM   #16
Tink572
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I was very against these medications in the beginning.

My son was 9 at diagnosis. We started him on a short taper of predisone when he was first diagnosed and Imuran and later Lialda. After a year and a half or so, he was having no pain or diarrhea so I thought he was doing ok (major denial!!) and eventually his doctor and I decided to try him off of medications.

Fast forward about 3 years later, around age 12, he was not growing and not gaining weight (he was under 1% for height and at 3% for weight on the growth charts). I took him to an endocrinologist for his lack of growth. His first question was "Is his Crohn's really in control?" We went to a new GI doctor who ordered blood work and eventually scopes. SED rate was 58. Scopes showed "pretty significant" disease in his terminal ileum. Boy did I feel awful for thinking he was doing better than he was. He was started on Remicade and had to have surgery a year later for a stricture that the Remicade just could not fix. He is still on Remicade and I will never ask to take him off as long as he is doing good on it!!

One thing I have learned from this is that while you think things are going good, it can really be festering and making a mess. Since having surgery and truly getting his disease in control, he has gained about 18 pounds and grown about 3.5 inches in 5 months.

I know the medicines are scary, but what can happen without them is really scary too. I hope EN continues to work for your daughter, but please don't totally rule out medications.
01-24-2013, 01:11 PM   #17
muppet
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Yes, I agree. But are meds the only way to achieve this?
Some rare few claim a lot of success with diet alone, but I'm always skeptical of this. I managed to stay asymptomatic myself for 7 years, but ended up with a very bad abscess/fistula at the end of that period, and ended up back on medication.

I've had Crohn's for 30 years, and my daughter for 11 years, and while there do seem to be "mild" cases out there and people can get away without medication for quite awhile in seemingly good health, there are also cases of people suffering pretty severe incremental damage from quiet inflammation that was asymptomatic until the point of surgery being required.

Try diet if you want, but be incredibly vigilant and careful. It's a very, very difficult thing for an inexperienced sufferer/caregiver to maintain a remission with diet alone. For some patients, I think it's simply impossible, although I know there are at least a handful of people on this forum who would disagree with me.

Ultimately what you decide to do for your child is up to you but having nearly lost my 14 year old twice since age 3, once when we tried reducing her meds in favor of nutritional solutions due to her disease being so quiet, I can't help but say that if it were me I'd take the meds. My daughter went from apparently full remission to inpatient and receiving blood transfusions in under a week once. Crohn's is cyclical and random. You can easily misinterpret a passing quiet period as being the result of this or that regimen when really it's just the disease doing what it does.

I use Lialda, which is a 5-ASA, and while 5-ASA is generally considered not "beefy" enough for Crohn's, I've been using some form of ASA (with occasional prednisone to get me through intermittent flares) for 30 years now and have never "upgraded" to a "real" Crohn's drug. I credit my diet choices for that, but I'd never try to go med-free again.
01-24-2013, 01:11 PM   #18
crohnsinct
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Welcome Alaska! I went there on my honeymoon and fell in love with it...truly God's Country!

I am sorry to hear about your daughter's dx but wanted to share with you my daughter's journey. She was always thin but I am thin, shoe size didn't change for almost three years, never a stomach problem, triathlete and the only symptom we sorta kinda noticed was her times slowing down.

Last January she went to the the mall ate chinese food from the food court and came home with severe diarhrea that lasted two weeks. At first we thought it was food poisoning but when I really looked at her and saw how thin she was (4' 8" 65 pounds) I took her to the ped. At ped's office her HGB was a 7 and we were admitted that day. 2 blood transfusions, TPN right away and within the first 24 hours she was in ICU. They told me they figured she had the disease for about two years and that it was silently doing it's damage until all you know what broke loose. Severity is judged not only on symptoms but effects of disease, age, etc.

I tell you this not to scare you because this diesease most definitely can be managed and half the battle is knowing you have it. But want to stress that it can often be silent and only rear its head obviously when things are very serious.

I think it is great that you have a diagnosis and are carefully considering all your options.

My daughter did EEN and had great success with it. The thing to keep in mind is that EEN only works while you are using it. Once you complete it you may stay in remission for awhile (for some a month, others 3 months and still others 6 months or more). There is no way of knowing how long the remission will last. Subesquent trials of EEN are not as successful as the first but many do succeeed. For this reason many people choose a maintenance med (Azathioprine, Methotrexate, Biologics etc). Some choose to hop on and off EEN as needed. My only concern would be with very few symptoms my daughter's disease would be progressing without us knowing and the damage from the inflammation would be done and we would be back where we started. Our doc put our daughter on remicade and prednisone while in patient. It worked but didn't get her all the way there. Our doc wanted to add Methotrexate but we asked to use EEN first. Luckily it worked for us and gave us the added bonus of good nutrition.

I was not happy about Remicade but now my daughter has grown 4 inches, gained 2o pounds and is improving in her athletic endeavors so Remicade is my new best friend. Still no signs of puberty though.

I would think signs of puberty are a good indication you are getting ahead of the disease and are at a good point to act. Good luck with whatever you decide. The parents here are a great resource so keep those questions coming...there is always someone here who has tried that, done that or been there.
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Daughter O dx 2/1/12 at age 12
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Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
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Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
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01-24-2013, 01:54 PM   #19
Jmrogers4
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Welcome to the forum My son is 13 as well and we have thought we were doing great for the last couple of years, just went to the Ped's the other day for possible flu and he is 1% for weight as well 5' - 77lbs. Never really had D. no blood in stools. His main symptoms were failure to grow/gain weight. He says he feels great, however we suspect that there is ongoing inflammation. Bloodwork comes back good he has the same CRP and ESR .5 and 11. We have an appt. next week to schedule scopes. So even when you are on the big guns (First Imuran, Methotrexate, now LDN) this disease can still be silently doing damage. Still his only symptom is failure to grow, gain weight.
I'm glad your daughter will drink Ensure, Jack will not. We are looking at EEN if his GI says prednisone. It sounds like you are 1/2 there in that respect.
Hope you find what works for you and your daughter and we can offer support when you need it.
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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
01-24-2013, 02:07 PM   #20
crohnsinct
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Forgot to mention my daughter drank Ensure and Boost 6-10 cans a day for 6 weeks as her EEN. Nothing else other than water and one piece of chewing gum a day. Gradually added food back so back on full diet after about 10 weeks.
01-24-2013, 03:49 PM   #21
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Hi and welcome! I can understand your reluctance to starting the stronger meds. My son has no symptoms at all at the moment (he did the 8 weeks EN a year and a half ago), however he has a fistula in his bottom which the surgeons are reluctant to operate on. So we will be starting with 6mp in a couple weeks - I soooo don't want to! I find it hard to justify it in my mind since there is nothing else wrong with him, however if the fistula got worse and he ended up needing a bigger operation, I would feel awful that I didn't try the meds. So I put it off for as long as they will let me and we are going to try the 6mp and hope for the best.
Good luck with your decision. This is a hard disease to keep track of because so much happens inside that we cannot see.
01-24-2013, 05:38 PM   #22
jmckinley
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Yes, I hemmed and hawed from October 2011 to March 2012 on remicade. Then I did the same over adding the methotrexate and tried the paleo diet for 10 weeks. I finally ended up calling the GI and asking him to admit Ryan and get things under control. In hindsight, I wish I had started things much sooner because we lost valuable time and he suffered for months. He did feel better on the diet, but his crohn's was silently brewing underneath. His CRP and SED rate were horrible upon admission. GI pretty much chewed my tail. We are speaking again :-)
01-24-2013, 08:09 PM   #23
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My son was diagnosed at age 11 in Oct 2011. He had the same symptoms as your daughter weight loss and lack of growth. He also has constipation.

When someone is labeled with crohn's as mild/moderate/severe it is based on how they look during the scope that day. Which is not always a good indicator of future disease course. The fact that she was diagnosed as a child is a very good indicator her disease will not be mild. Only 20% of crohn's is diagnosed in childhood. Also, the level of growth delay, weight percentile, and delay in puberty you describe does not sound mild.

My son was put on Prednisone and his labs were normal in 6 days. Short term prednisone will not effect growth. He gained 30lbs while on it. He took the full dose for 6 weeks then started to taper so he really wasn't on it all that long.

The longer you wait and try different things the harder it will be to get your daughter into remission.

I hated the thought of my son taking 6mp at first and now I pray he can stay on it as long as possible. This medication has given me my son back.

I can only tell you that it is hard to explain to you the huge difference I see in my son now that his crohn's is treated. I look at pictures of him before diagnosis and my heart breaks at how thin he was. He was literally starving. He is a totally different kid now.

These doctors have treated this disease for years and they have seen it all. Trust them if they tell you diet alone won't control her.

I know this is all very hard to take in and come to terms with. Praying you find the right treatment for your girl and she is growing and gaining weight soon. (((((Hugs))))))
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Mom of Johnny
Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
Multi Vitamin
Vitamin D3 1000mg
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01-24-2013, 08:52 PM   #24
Patricia56
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Julie/Patricia, how can you say she is in a severe flare and has been for a while if 16/17 biopsies show no disease even after a lifetime of her problems?
The biopsies only sampled the colon. And they only sampled a very small part of the colon. The colon is important but a person can survive pretty well without it. The part that's absolutely essential is the small intestine. And it sounds like the small intestine showed extensive inflammation and ulcers.

Her disease may have been quiet/remission at times and flaring at other times. Crohn's doesn't affect everyone in the same ways at the same rate or to the same degree. It's not unusual for the colon to be spared while the small intestine is badly inflamed.

We just got some bloodwork yesterday so maybe the sed rate will help show us. What other blood work do you all do that helps to know whether she is in a "severe" flare?
Blood work doesn't always serve as a good guide to the severity of a flare - at least not until the kid is so sick you don't need a blood test to tell you they should be in the hospital. My son is one of those. His CrP never became elevated even when he was bleeding from severe inflammation in the sigmoid colon and rectal vault, bleeding ulcers in his small intestine and his intestines had completely stopped moving anything through them (obstipation). And his ESR was only elevated to 20 with the normal level 15.

Wish I could promise you that her bloodwork is going to be a reliable guide. It might - you and your doctor will have to figure that out and sometimes it takes a while to discern a pattern.

Her CRP is < 0.5 and her ESR is 11.
Both of these are unreliable measures of illness for my son. Our leading indicator is ferritin. When his ferritin level falls we know he is starting to have trouble.

Each GI has their own preferences about what labs to run. The ones our GI orders are very comprehensive and I know a lot of GI's do not order all of these every 3 months.

CBC w/Diff
Comprehensive Metabolic Panel
Chemistry Panel
GGT
ESR
CrP
Ferritin

at least once a year we also do a Lipid panel.

What are the goals of the meds?
I think you mean prednisone and/or budesonide. Prednisone is to suppress the inflammation so that she doesn't develop a perforated ulcer or blockage due to swelling of the intestines either trapping food or the intestinal walls swelling closed. The goal is the same with budesonide.

Weight gain, being able to eat, not having pain? How do you assess this? If she's had this all her life, why hasn't she had the bad things that people describe that goes along with this? (ie fistulas, abscesses, blockage, etc?). I agree that it isn't good that she isn't growing and that she is malnourished.
No one can say for sure that she's had it all her life - at least not to the degree that she has it now. The history you report is certainly suspicious but that doesn't mean she had it the whole time. As I said before she may have had periods of remission that helped her heal and catch up. I don't know.

For example, the severe pain she had as a 4 yr old may have been partial blockages - or something else altogether.

If by diet we can get rid of the inflammation and help increase her appetite, isn't that good enough?
No. It is not good enough. Because the inflammation will come back. And you may be underestimating the degree to which her malnutrition has affected her body and it's development. She is going to need a lot of time to recover nutritionally and then get back onto the growth curve. If she is starting puberty she is entering a period of even greater nutritional demands. You can talk to your nutritionist and doctor about this - it's great that you have a nutritionist on your team.

There are many alternative treatments of other diseases but with Crohn's you are working with a limited palette of meds that we know for a fact promote mucosal healing in most chidlren with Crohn's.

Like all of us here, you want the lowest risk treatments to achieve the maximum benefit - remission. Sometimes it works out that way but it almost never turns out that way when your child has mod/severe disease.

You may want to read a short version of our story here:

http://www.crohnsforum.com/showthrea...529#post478529

All the best

Last edited by Patricia56; 01-25-2013 at 01:17 AM.
01-24-2013, 08:56 PM   #25
Hope345
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Carol,

To answer your question about the biopsies: they would not appear as ulcers. The biopsies are so small.

It was one of the hardest decision we made to put our daughter on Prednisone, and then on Remicade. But I have no regrets. it did take almost a year, but today she is doing so well. And today, January 24th, 2013 is the best day she has had since being diagnosed. There have been many highs and lows over this last year; There are trials, there are good days and bad days... and some tears. and I am careful to say it is today that she is doing well, because this disease is so unpredictable.

there are other treatments you can consider too, usually in addition to a medication, until remisison is achieved: Fecal infusion and Anti-M.A.P treatment., and there is so much research being done, that more treatments may be available some day.

wishing you and your daughter the best
01-24-2013, 09:11 PM   #26
kimmidwife
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Hi Carol,
You have been given so much good advice already. The only thing I wanted to add is that boost and ensure are not always considered true EN and may not do the full job. Most doctors reccomend special prescription formulas in which the ingredients are so broken down that the body has to do very little to process them. This allows the bowel to rest and heal. If you decide to go the EN route you may want to discuss this with your doctor.
Also the alternative steroid Patricia mentioned budesonide also called entocort is a good option to consider. Our daughter has almost no side effects from it when she has used it. Good luck in whatever you decide and let keep us posted!

Kim
__________________

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.
01-26-2013, 04:34 AM   #27
DustyKat
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Hi Carol and

There are two things about this disease that I think are paramount.

1. Beware the sleeping dragon. In other words...never underestimate what inflammation silently simmering away is capable of.

2. No matter the path you choose now, tomorrow or ten years down the track. Never hold so tightly to it that you don't see the forest for the trees.
There are no wrong decisions when it comes to treatment, just different ones. Above all else you must be prepared to be honest with what you see whether it be physically and/or clinically and change tact if it is called for.

I well understand your fear and dread of the medications, we all do. I think one of the ways I managed to get my head around it is to reason with myself what I would do if my child had a different disorder. What if they were diabetic or asthmatic? Would I not give medication due to potential side effects? No, because these diseases have the potential to kill if left untreated or under treated. Unfortunately Crohn's is no different.
I experienced this with my daughter. I must point out that she was undiagnosed at the time but her untreated Crohn's resulted in emergency surgery for a perforated and infarcted bowel and we came within a whiskers breadth of losing her. The main reason she went so long without a diagnosis is that Crohn's wasn't even on the radar so scopes were not done. She did not have the 'classic symptoms' and for both of my children blood and diarrhoea were never a symptom. For my daughter another red herring was that imaging and bloods consistently returned normal results until very, very late in the game.

You have been given wonderful advice about EN, LDN and Budesonide so I have nothing to add there. I would like to wish you every success in whatever path you choose hun and remember to keep asking questions as knowledge certainly is power.

Good luck and welcome aboard!

Dusty. xxx
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01-26-2013, 05:20 AM   #28
CarolinAlaska
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Hi Dusty. Thanks for the post. I think I am starting to get it. The more I read on this board, the more I start to see the nature of this beast we are beginning to fight. Below is a copy of an email I sent to my peds GI today. She seemed positive about EEN for Jaedyn when I first talked to her a few weeks ago, before we had a final diagnosis. She seemed to say that it was viable alternative and she was glad we would consider it.

Dear Dr. Wilson,

I thought Id write you to give you a little update on Jaedyn. I know you are waiting to hear what we decided about prednisone.

For now, we dont want to do prednisone. We wont completely rule out ever doing it, but wed like to try alternatives first.

Jaedyn is doing fairly well now. She states that she is not having pain or diarrhea at this time, and hasnt had pain for a week or diarrhea for maybe 2 weeks. She does state that she feels sick after meals and nauseated. Sometimes she stops eating during a meal due to these feelings, but can finish it if she waits 20 minutes or so. Her servings are pretty small and she is eating regularly. She is also drinking, right now, about 2 Ensures a day. As of last week (or was it the week before?) when she saw Dr. Bailey, she had gained 2 lbs and grown an inch. She weighed 70.4 lbs, and I think this increase was since she saw you in December.

Ive talked a lot to Jaedyn and she is committed to getting better. Weve talked about the prednisone and about EEN. She is willing to try EEN if necessary. Would it be possible to try a period of doing supplemental Ensure (say 4-6 cans you tell me how much) orally in addition to her foods to see if she will continue to get better, or do you feel that would be a waste of time? We could go see Dr Schramm every 2 weeks for weight and growth checks.

If she starts EEN or not, when would you recommend that she start a maintenance medication? Is budesonide only used for induction? What maintenance medication would you want her to do and when would you want her to start?

If we do total EEN, I would like a plan spelled out for us, such as recommended formula to use, how much, how long (or when do we check in with you, etc). Could she eat/drink anything else? Jaedyn will try doing it orally, but already she is getting tired of the Ensure. She said shed be willing to try the nighttime feedings with the NG tube if necessary also.

We do seem to have a dietician here who is knowledgeable about Crohns. Her name is Shea Brumley and she is associated with Central Peninsula Hospital. Tim (her dad) and Jaedyn met with her once and she is working with us to help Jaedyn increase her calories and improve her nutrition.

Jaedyn had some bloodwork done on Wednesday, including some vitamin levels, CMP, Sed Rate and ESR. I assume Dr. Schramm is planning to forward it to you when she gets everything back. The sed rate and CRP were normal. B-12 was in the upper 600s, AST still a little high at 29, but otherwise things were mostly normal. The other vitamin/ferritin levels were still pending. No CBC was done.

Thanks for your time. I hope you have a good weekend.

Carol
I showed Jaedyn the video of the little girl on Youtube (link from the EEN thread - second post) showing how to insert an NG tube. She was impressed by this and saw that it was really no big deal. I'm so proud that she is showing maturity in this. She's come a long way in the last six weeks. Six weeks ago, I almost had to pry her out of the van to go get a blood draw. This week she came willingly to my office after seeing the nutritionist, let me put lidocaine/prilocaine on her arms and gave her daddy no grief about getting the blood draw, even though they ended up having to stick her twice. My little girl is growing up!
01-26-2013, 07:45 AM   #29
DustyKat
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EEN is a very good viable alternative. I hope it works wonderfully well for you girl, bless her.

Dusty. xxx
01-26-2013, 07:46 AM   #30
Farmwife
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My Grace is doing EN. I love it. I hope she does well!
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