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New to Forum, newly diagnosed 13 year old - J's story

CarolinAlaska

Holding It Together
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:sign0085:
 

Catherine

Moderator
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.
 
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
 
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.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
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!
 

CarolinAlaska

Holding It Together
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.
:rosette1:

Carol
 
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
.
 
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.
 
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.
 

CarolinAlaska

Holding It Together
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?:shifty-t:
 
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.
 
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.
 
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.
 

CarolinAlaska

Holding It Together
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?
 
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.
 
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.
 

crohnsinct

Well-known member
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.
 
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.
 

crohnsinct

Well-known member
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.
 
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.
 
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 :)
 
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))))))
 
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/showthread.php?p=478529#post478529

All the best
 
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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
 
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
 

DustyKat

Super Moderator
Hi Carol and :welcome:

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. :hug: 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
 

CarolinAlaska

Holding It Together
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 I’d 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 don’t want to do prednisone. We won’t completely rule out ever doing it, but we’d 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 hasn’t 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.

I’ve talked a lot to Jaedyn and she is committed to getting better. We’ve 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 she’d 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 Crohn’s. 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.:cheers: My little girl is growing up!
 

DustyKat

Super Moderator
EEN is a very good viable alternative. :) I hope it works wonderfully well for you girl, bless her. :heart:

Dusty. xxx
 

crohnsinct

Well-known member
Can I just say that I am totally impressed with J but whoa mama totally and incredibly impressed with YOU! You have taken such control of the situation and done your research and intelligently processed all the information set before you. Give yourself a big giant pat on the back!

Now, just telling you what our doc says...EEN means nothing but the formula and water. He says for it to really work you have to go exclusive. He agrees there are some docs seeing results with 90/10 or 80/20 schedules but he clings to the old school so don't be surprised if your doc goes old school as well. We did exclusive for 6 weeks. O had all the different flavors and never got bored. After the six weeks it was a bit of a slow introduction of food. She visably got better and labs improved and we saw some weight gain. However, the true big gain and energy came after she was healed (the committee still wonders if doc had her on enough calories of formula). So be patient. Forward progress is good...don't get discouraged if weight gain is slow.

Good luck and keep us posted. Isn't having email access to docs the bomb?!
 
Yeah no kidding. I'd have mistaken you for a very experienced IBD/Crohn's parent and not a newcomer. You've come up to speed insanely quickly.

I think Dr. B is sick of my emails, but he still responds.. ;-)
 

CarolinAlaska

Holding It Together
Can I just say that I am totally impressed with J but whoa mama totally and incredibly impressed with YOU! You have taken such control of the situation and done your research and intelligently processed all the information set before you. Give yourself a big giant pat on the back!

Now, just telling you what our doc says...EEN means nothing but the formula and water. He says for it to really work you have to go exclusive. He agrees there are some docs seeing results with 90/10 or 80/20 schedules but he clings to the old school so don't be surprised if your doc goes old school as well. We did exclusive for 6 weeks. O had all the different flavors and never got bored. After the six weeks it was a bit of a slow introduction of food. She visably got better and labs improved and we saw some weight gain. However, the true big gain and energy came after she was healed (the committee still wonders if doc had her on enough calories of formula). So be patient. Forward progress is good...don't get discouraged if weight gain is slow.

Good luck and keep us posted. Isn't having email access to docs the bomb?!
Thanks. I agree with all of the above.

It's funny. I found her email on the internet. She doesn't email me back, but the one other time I emailed her, she called back a few evenings later. This way, I'm hoping, she can see my questions ahead of time, and I'm not caught off guard and unprepared. Hopefully I'll have access to my email when she calls so I can be sure we cover all the Qs!
 

CarolinAlaska

Holding It Together
Yeah no kidding. I'd have mistaken you for a very experienced IBD/Crohn's parent and not a newcomer. You've come up to speed insanely quickly.

I think Dr. B is sick of my emails, but he still responds.. ;-)
I've done little except think about this since her diagnosis was nailed down... I also have the benefit of having access to medical info myself as I am a family practitioner (PA). This board has been very helpful too.
 

CarolinAlaska

Holding It Together
I'll admit that until I found this board and read the experience of other parents I was in denial that she has this chronic disease. Now I see the experience she is having is similar to others and realize that yes, it can present like her and all the tests can be normal, etc.

Sometimes knowing a little (as a PA) can be detrimental in that I read all the horrible things that can happen... Maybe this is the reason the Lord wanted me to be a PA, so I could help my dd, so we would have good insurance during this time in her life, etc... I am very cerebral and have to understand it all and figure out the whys and hows and so forth. As a mom I'm finding that I am waking with a burning stomach ever since the diagnosis - I know it is worry from all the processing my subconscious mind does during the night... The down side of being a medical practitioner is that I think sometimes my daughter's doctor thinks I know more than I do. Sometimes I think she is leaving the figuring out what to do up to me. I appreciate her not pushing, but sometimes I just want her to say, "Carol, I really think it would be best if we do this... and here's why." Honestly I have gotten much more understanding about this Crohn's disease from this board, my own research and other websites... I don't blame her, it's just the way it is, and she's a very busy doc being one of the only Peds GIs in the state...
 

crohnsinct

Well-known member
Hmmm God does work in mysterious ways. And this experience will make you a better practitioner also!

If you want a doc to tell you their opinion and dictate things come use my doc...Muppet will tell you...he never holds back on his opinion. Hard call. We want them to tell us their opinion but listen to us also. I think it is a rare doc who could walk that line gracefully.

I wouldn't hesitate asking the doc either, "what would you do if she were your child" They are usually pretty clear on that one.
 
This way, I'm hoping, she can see my questions ahead of time, and I'm not caught off guard and unprepared. Hopefully I'll have access to my email when she calls so I can be sure we cover all the Qs!
I wonder if this is why Jack's GI always calls me after hours, he knows it will not be a 2 minute conversation
 

CarolinAlaska

Holding It Together
Keep Jaedyn in your prayers. She looks so thin. She got all dressed to go to a special tea party at a church with her sisters and friends then I had her drink an Ensure. She started feeling sick and had to go lay down... She decided to go anyway. I cried in the car after I dropped them off. I keep hoping that the diagnosis is wrong and that she'll just get better. Then I stop and pay attention and it hits me hard. This monster I'm fighting is not going to go away without a fight and supernatural help...
 

my little penguin

Moderator
Staff member
Hugs. ..... It will get better the darkest days are before the dawn.
I know last January - 4 months after dx - I was still in tears. DS was still sick and thin and I had a hard time thinking it would get better.
It was very hard . But after months of trying different scary drugs - lots of tests a second time . I can say by October of last year DS had gained 20lbs and was basically pain free .
He now looks healthy , is swimming competitvely again.
Life is good .
I can say boost was enough to get DS to gain weight in the beginning prior to dx but soon it didn't work any more probably from inflammation.
It wasn't until he was on pred and peptamen jr ( semi elemental peptide based formula ) that he was able to gain weight.

Please look at the pediatric research section it has many papers on EEN as well as management in children
 

Catherine

Moderator
My daughter Sarah always been a thin girl at 5ft 8 we had to work very hard to keep her weight above 55kg.

We had been treating for low iron, then anemia for two years. Then 7 months prior to dx the stomach ache which were every couple months got close together, the anemia worsed a ultrasound was miss read.

This misread meant further testing was done for a further 6-7 months, in this time her weight dropped to 44kg, hemoglobin to 90, she gave up swimming, she sleeped 16 hours a day and was in constant severe pain.

At this we had no choice but to go the pred route. Her pain gone 4 days are starting pred and she was back at school 6 days later.

I will also,wonder whether this delay in treatment caused the problems in are having now.
 
Hugs
We've all been where you are and some of us are still there.:cool:
I'll pray that things get going in the right direction soon.:rosette2:
 

CarolinAlaska

Holding It Together
She's back from the tea party and had a nice time. Had to sit down once not feeling well, but now she seems more of her perky self... We got some cute pictures earlier, maybe I'll post a couple later.

Thanks for your support... :thumleft:
 
Glad she had a good time!

Sometimes when my son has something to do with friends but just isn't feeling great I'll send him anyway. He usually ends up having a great time and I think it keeps his mind off not feeling good.
 
Glad she had fun, I love tea parties. It's hard to see them so thin, you go along knowing they are thin but not really processing how thin until something shoves it right in your face, at least that is where we are at. Soon we will have them both feeling well and gaining weight - power of positive thinking :thumleft:
 

DustyKat

Super Moderator
So fab to hear Jaedyn had a good time. :):):)

If there is one thing this disease does it's that gives you a whole new appreciation of two very innocuous words...normal and boring!

Dusty. :hug:
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
I'm glad she had a good time!! What the heck happens at a "tea" party anyway? Alaska is still in the US last time I checked. When we have "tea" parties, we pump our fists and say things like "don't tread on me":)

Carol, a while back, Dusty started a thread about grieving on here and you could count the steps we all went through when our kids were dx'ed. It's a process, you'll never stop grieving for her but you will get better! I promise:)
 

crohnsinct

Well-known member
You don't need super natural intervention...you have YOU, you have J, the missing part is the right treatment and you are on your way to finding that. It is so hard to have the effects of the disease stare you down like that and watch your child suffer but it won't be long till you are posting your suucess story with gobs of weight gain and all the amazing activities she is doing.

For now rejoice in the fact that your 13 year old is still even remotely interested in tea parties! Glad she had a good time!
 
Location
Canada
:welcome: Carol

So sorry to hear of your daughter's diagnosis but glad you have found the forum.

Just wanted to let you know that my son did EEN via night feeds using a NG tube for 6 weeks, he was 10 years old at the time. I was extremely worried about how horrible it would be for him to insert the NG tube and was completely amazed when he learned how to do it in under an hour and within a few days could insert it himself in about 12 seconds! The tube size he used was 6FR and it was not weighted. I think the size of the tube has a large bearing on how comfortable it is.

Good luck with whatever path you choose and keep us posted on how she is doing.
 

CarolinAlaska

Holding It Together
I'm glad she had a good time!! What the heck happens at a "tea" party anyway? Alaska is still in the US last time I checked. When we have "tea" parties, we pump our fists and say things like "don't tread on me":)

Carol, a while back, Dusty started a thread about grieving on here and you could count the steps we all went through when our kids were dx'ed. It's a process, you'll never stop grieving for her but you will get better! I promise:)
Thanks.

This kind of tea party is an affair for dressing up in formal and semi-formal wear, drink hot beverages (this time they had hot apple cider) from fancy tea pots and pretty cups, and eat dainty dishes of fancy treats (Jaedyn was able to eat a white chocolate snowflake with icing and colored sugar, but they also had powdered donut holes but she is gluten free and wasn't able to eat them). They got a charm-bracelet and charms from this particular club that invited them and did a craft where they made pretty snowflake decorations.

In the past I took the girls to a tea party when they were little where they got to wear beautiful dresses, get their hair done and makeup put on, and got their pictures taken. They also drank the tea from pretty sets and had special dainties to eat. I think these tea parties are nice, and even my teenage girls liked to take part in it.
 

CarolinAlaska

Holding It Together
You don't need super natural intervention...you have YOU, you have J, the missing part is the right treatment and you are on your way to finding that. It is so hard to have the effects of the disease stare you down like that and watch your child suffer but it won't be long till you are posting your suucess story with gobs of weight gain and all the amazing activities she is doing.

For now rejoice in the fact that your 13 year old is still even remotely interested in tea parties! Glad she had a good time!
Kim, I would never presume to not need God in this battle. He is my strongest anchor, my Healer, my hope, my Warrior, my shelter... He has brought healing in our family from seizures (my oldest daughter), from scoliosis (my youngest daughter) and from depression (me in my early adulthood). Sometimes I forget Who is my Healer, and look at it from a human perspective, but when I put my faith where it belongs, I am a much stronger person and I can stand back and see what He will do. This doesn't mean I'm not human anymore, but it is a relationship that means everything to me... :)

As for tea parties, my girls aren't the typical teens. They stand out in the crowd and don't fit in the usual molds, but I wouldn't have it any other way. :p
 

CarolinAlaska

Holding It Together
:welcome: Carol

So sorry to hear of your daughter's diagnosis but glad you have found the forum.

Just wanted to let you know that my son did EEN via night feeds using a NG tube for 6 weeks, he was 10 years old at the time. I was extremely worried about how horrible it would be for him to insert the NG tube and was completely amazed when he learned how to do it in under an hour and within a few days could insert it himself in about 12 seconds! The tube size he used was 6FR and it was not weighted. I think the size of the tube has a large bearing on how comfortable it is.

Good luck with whatever path you choose and keep us posted on how she is doing.
Twiggy, what was your son's experience with EEN? Was it helpful? Did it bring him to remission? Was it difficult? Thanks for your support :)
 
Sometimes knowing a little (as a PA) can be detrimental in that I read all the horrible things that can happen... The down side of being a medical practitioner is that I think sometimes my daughter's doctor thinks I know more than I do. Sometimes I think she is leaving the figuring out what to do up to me. I appreciate her not pushing, but sometimes I just want her to say, "Carol, I really think it would be best if we do this... and here's why." Honestly I have gotten much more understanding about this Crohn's disease from this board, my own research and other websites... I don't blame her, it's just the way it is, and she's a very busy doc being one of the only Peds GIs in the state...
I really relate to what you are saying about the doctor's thinking you know more than you do and treating you differently than they would most other parents/patients, leaving out important info because they assume you know it already.

Can't count the number of times I've been asked if I'm a medical professional because I know what's in a CBC w/diff or can do the riff on the Comprehensive Metabolic Panel and can tell you all the different parts of the intestines in the right order. When I say No I get weird looks.

I tell them I am just a mom with lots of experience with kids w/medical conditions. This seems to be a category they can recognize and handle. Sometimes I add that I know a lot about what I know and not much about everything else.

Rarely I call myself an expert caregiver - usually when I'm having to have a confrontation with a disrespectful or uncooperative medical professional. Which I think is an accurate description. But using the word expert sets the docs off, since of course you can't be an expert if you don't have little letters behind your name. But when it comes to our son with Osteogenesis Imperfecta I am damn well a bigger expert than 99.9% of the world's doctors will ever be.

I have learned to flat out ask doctors" what do you recommend" when they seem to think I can mind-read or when they appear to believe that I am so set on a course of action I can't be swayed. Usually this is because I have asked lots of critical questions. Asking questions makes them defensive and they jump to conclusions about my decision.

Talking their lingo isn't what they're used to and I think they switch to "you're another doctor" mode and drop into medical shorthand and again make assumptions about my knowledge and ability to make decisions.

So I totally get what you mean about that. It's good that you recognize it. Do you think telling the docs - just treat me like any other shell-shocked parent of a newly diagnosed kid - would be helpful?

And, as one cerebral person to another, you might want to spend some time drawing, coloring or writing about this experience. I found those things helpful in coping with the grief that at first seemed to be non-existent but eventually became very intense. You might ask yourself - what is my face feeling?
 
Hi!

You have had some fabulous advice on here! My daughter is 19 and as yet she has a coeliacs diagnosis, and is being investigated for IBD.

She has been on Pred since mid November and when on between 30-40 mg she seems really well, but as soon as she tapers down lower she becomes sick. This is hard to watch!

Your GI seems on the ball with all the tests he did so quickly!

Good luck :goodluck:
 
Location
Canada
Carol,

My son did EEN when the initial round of prednisone that was prescribed at diagnosis was not seeming to bring him into remission. When I say that the pred was not bringing him into remission I should point out that his blood work was improving (CRP) but he was still having significant pain and his BMs were still not solid (although they had greatly reduced in number). So we decided to do EEN, which was a treatment they recommended we do at diagnosis but at that moment in time both my son and my husband and I felt like we weren't up for that challenge. My son started EEN while he was weening off prednisone.

While on EEN my son's blood work continued to show improvements and he finally started having solid BMs. However, he continued to have significant abdominal pain on a regular basis. We did the EEN for the full 6 weeks and then started to slowly reintroduce foods. EEN didn't solve his issues with abdominal pain but I think it greatly improved his ability to ween from the prednisone and it sure helped him nutritionally.

My son found dealing with the NG tube no problem at all. I really couldn't believe it. He did find not eating challenging. For the most part he was not hungry but just wanted to eat, especially at meal times. He was allowed to consume clear fluids (apple juice, Sprite, Gatorade, broth, etc.), jello, hard clear candies and a small amount of gummy bears. If he did get hungry during the day he was allowed to drink some of the formula, we used Modulen in the NG tube at night but he would usually have Boost during the day as it is tastier. We also used distraction and bribery to get him through the 6 weeks with no food. He was suddenly allowed to play video games downstairs while we all ate dinner and his reward for completing the EEN was a tank of piranhas (he had to do all the piranha care research which we also used as a distraction).

In the end, if/when we have to treat another flare I think he would likely choose EEN over prednisone. It is a mighty hard thing to have to watch your child do but I did find some relief in knowing exactly what nutrients he was getting. I used to lie in bed at night and listen to the pump churning across the hall and feel comforted, like something concrete was being done to fix all this. Weird I know.
 

crohnsinct

Well-known member
Whoa! I didn't mean to imply you didn't need God! I am a believer as well. I was reading super natural in the spacey wizardry sense of the word. God is very natural and real to me. Just a different way of looking at it I guess.

Yeah, he made an imoperable brain tumor that gave my daughter 18 months to live disappear on it's own. Even hte neurologist admits there are miracles among us!
 
CarolinAlaska-

I too am very new to this group, my daughter was diagnosed last week, but my daughter like yours showed very few signs of Crohn's. She actually is very tall, but painfully thin. Since August, she lost 20 lbs. She's now 5'8" and 104 lbs. Her only signs of disease were weight loss, hemeroids, and constipation. I guess looking back, she did nap a lot, but she's also very active (pitcher for her fastpitch team, rides horses) so didn't think twice about her fatigue, I just thougth it was a typical lazy teenager. I'm very lucky that her pediatrician kept at the tests and referrals until we figured out what was causing her weight loss. I am trying the prednisone route only because she was losing about 1-2 lbs every few weeks and I couldn't watch it anymore. She's now eating like a horse, but I'm watching for other side effects. Our plan is to start aza. this week if the enzyme test comes back right and go from there. I mentioned the EEN route to my daughter and she wanted to try other things first. I know every person has a difference preference and there isn't one way to treat things so I hope whatever method you end up choosing gives your daughter the relief and recovery she needs.

Prayers-

Erinsmom
 

CarolinAlaska

Holding It Together
I thought this study was interesting. To a large degree because it seems counterintuitive. Patients who knew they were being prayed for got sicker:

www.m.webmd.com/heart-disease/news/20060331/praying-for-health-study-stirs-debate
Wierd, huh. I've seen studies that proved prayer worked. I don't see how many people were prayed for in each group, but how could anyone be in a group where definitely no one was praying for them. Doesn't everyone have someone in their circle of family or friends who would pray for them?
 

CarolinAlaska

Holding It Together
Hi Erin, how old is your daughter? My 15 yo (not crohn's) is 5'8, but I don't remember what she weighs. It will be interesting to compare how long our two girls take to reach remission on the two different pathways. Mine is not losing weight, but she doesn't have any to lose as she is only 70 lbs.
 

CarolinAlaska

Holding It Together
Twiggy, things for sharing your son's experience with EEN. I know it will be a challenge, but at this time I think were all ready for something to change. Fortunately her labs are not too bad. Her inflammatory markers are normal right now.

I found out yesterday that my husband took her to McDonald's on Friday. That may have caused her problems. I don't know what they were thinking! Ugh! French fries and milk shake. :emot-cop:
 
I bet she enjoyed them while she was eating them though! I love McDonalds fries, however I don't like how they end up on my hips :)
 
Wierd, huh. I've seen studies that proved prayer worked. I don't see how many people were prayed for in each group, but how could anyone be in a group where definitely no one was praying for them. Doesn't everyone have someone in their circle of family or friends who would pray for them?
No. I can think of one person in my social circle who would, and that's my wife. I know plenty of people for whom prayer is meaningless and would neither pray nor ask to be prayed for.
 
Erinsmom,

We choose Prednisone for the same reason. It was like our son couldn't eat anymore. He was starving himself. Once he was on the Prednisone he ate everything and it was so awesome. I was afraid with EN that it would be hard for him to transition back to food. I think it was the right call for us. Hoping your beautiful girl is healthy soon. It was a process for us but our son is doing so much better now. (((((Hugs)))))
 

my little penguin

Moderator
Staff member
I can say that although EEN did not completely fix DS .
He still continues EN daily in addition to food. He is staying at the 70% weight fir his age from the 25th at dx. He was initially 75% from age two on.
I highly recommend some form of EN in addition to other meds just to level the playing field on easily absorbed nutrients regardless of disease activity.
Too many kids with crohn's and uc are constantly trying to catch up on weight since flares and just having crohn's /uc increases caloric need.
EN takes care of that so you only have to concentrate on the meds/ infkammation part.

DS is proof with a 20 lbs weight gain after none for over two years and slow weight gain since then .

Polymeric formulas - ensure / boost are whole proteins and take work for the body to absorb- but taste good
Semi- elemental formula - vital jr and peptamen jr are peptide based so only required a few inches of healthy intestines to absorb - still drinkable
Elemental - are amino acid based - easiest to absorb. - most broken down.
Neocate, eo28 splash , elecare - usually require a ng tube for older kids - younger children can tolerate it better orally.

Good luck
 
Thanks, I'm writing all these down for our appt.
Carol I'd be interested if you go with EEN or even just to supplement nutrition which one you choose.
 
We definitely don't have any issues putting on weight here, but I do worry about balanced nutrition and consistent hydration.
 

my little penguin

Moderator
Staff member
Jmrogers4
Just get as many samples as possible to try from the Gi .
Whichever one he drinks - was the rule our Gi went with since we wanted long term.
If its just ng tube then elemental - but that is pricey.

Make sure they put the prescription through a durable medical equipment company.
Most insurance does not cover formula or supplements.

Most do have durable equipment clause and will cover medical infusion supplies ( aka formula).

Good luck
 

CarolinAlaska

Holding It Together
No. I can think of one person in my social circle who would, and that's my wife. I know plenty of people for whom prayer is meaningless and would neither pray nor ask to be prayed for.
Really? I figured everyone had a granny or auntie or family friend who would pray for them whether they wanted it or not :(. Shows what I know...
 

crohnsinct

Well-known member
OH Muppet: I would totally pray for you! As a matter of fact i DID pray for you when you were in the ER and again when Sarah was impatient. Just call me Auntie Fairfield!

Erinsmom: we did prednisone at dx and it worked wonders. Worked so well that some days we are looking for the prednisone like a druggie looking for a fix!. Problem for us was as we tapered symptoms came back...even though she was also on Remicade (Still have a nice supply in the cupbaord waiting to attack the next flare). So doc said add MTX and we said try EN. EN worked. All this just to say, there is no one right or wrong and like MLP says don't get so tied to one method you won't see when it is time to try others. Bob and weave!
 

CarolinAlaska

Holding It Together
Here's an update: We spoke to the GI and she is in agreement to start EEN as her initial therapy. She is going to work up a plan for her and then call J's pediatrician to have her start her. We may have to go inpatient for the initial set-up. I envision the process taking a couple of days to get insurance prior approval, get all the supplies, etc. I think she will be using Ensure and going on a 16-18 hour a day feeding plan. Nothing by mouth except Ensure and water. We'll see how it looks when she gives us the final plan. I think I will have J be sure and get weighed and measured before we start. She is due for that anyway. Tonight she is going to eat some cookies, and she may have some steak, mac and cheese and potatoes tomorrow before we start, because those are her favorite foods and we don't know when she'll be able to eat solids again - it will be a weeks or months...
 
Sounds like a plan.

Glad your kiddo is on board with it. If she's drinking it (like it sounds) try using covered cups, straw, and stick to the same flavor for at least 3 days before moving on to the next one. Some people like it ice cold but this can cause stomach cramps in some people when it hits the tummy.

Sending healing and hope your way.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
She's the same age as my son so it'll be interesting to see how she handles the total EEN. Good luck Carol! I hope it does wonders!!
 

crohnsinct

Well-known member
Carol, I really hope this is your ticket! I remember O's good bye to food pig out. Hilarious combos.

Believe me when she starts feeling better and gaining weight she won't even miss it. O's was 6 weeks exclusive and slow reintro. Did the GI hint at what she was thinking for maintenance? On and off EN as needed? If drugs some need time to build up to therapeutic levels so you may want to start them now so when EN is complete they can take over.

Good Luck!
 
Carol-

My daugher just turned 14 last month. In August she was 5'6 and 125-130, now she's 5'8" and 104. It's scary how fast it came on, but last night she was definitley eating. I had to stop her from eating her third dessert. :)

Michele
 
Wow, there really are quite a few of us just starting these teen years, Jack will be exactly 13.5 on Thursday. These kiddos are amazing with all the regular teen stuff they have to deal with having this on top of it and they so rarely complain. They truly inspire me.
 

CarolinAlaska

Holding It Together
This is what I know so far: we will be doing NG tube with constant feeding most of the day since she doesn't go to school (16-18 hours/day) using Ensure so that it is the same formula when she takes it orally if she wants to do that too. There will be nothing else except water. I don't know how long she will be doing it yet. I asked about maintenance meds for after and she seemed unprepared for this question. I think perhaps we'll see how it goes and if it works well, may do periodic EN for maintenance?

Jaedyn is 5'3" and 70 lbs which height seems "in the normal range" but she is a child of 6'0" parents and a 7'0" grandfather. Her sister (19 months older) is 5'8". I am hoping she grows taller and reaches at least 5'8" before she's done. I am also hoping for her to be able to be in the normal range for weight... perhaps 50%? Is this asking too much?
 
Wow, there really are quite a few of us just starting these teen years, Jack will be exactly 13.5 on Thursday. These kiddos are amazing with all the regular teen stuff they have to deal with having this on top of it and they so rarely complain. They truly inspire me.
Hmmm... I think my daughter missed the memo on "rarely complain", but for the most part, she's a tough cookie. :)
 
Hope she gains and grows. I hear you on the height I'm not very tall but dad is 6'1" and his brother is the same height at 11 and Jack just hit 5'0" in the last few months His brother is growing like a weed and seems to eat every 15 minutes and I think will pass him in height within the next month or so.
Glad you are moving forward with the EN. I have to say I'm a little worried about no maintenance med as I was under the assumption that EN is a start but you need a little help to keep them there. I hope she feels better and starts growing like a flower (we'll leave the weeds to the boys :ybiggrin:)
 
Muppet - Oh Jack complains about how I never let him have enough xbox time, computer time. Make him do the dishes, clean his room, shovel snow, mow the lawn and on and on and on.
But rarely complains about taking his meds, or going for tests. The only thing he complains about is having to drink an Ensure as he is leaning over the sink taking a drinking then washing his mouth out with water 3 times for each sip. It's not that bad I've tried them. The only one I thought was awful was the Boost 1.5 as I felt like I was drinking pudding.
 

my little penguin

Moderator
Staff member
^^^ yeah that
EEN is good to get into remission but and but time while maintenance meds try to work.
Most start with 6-mp or Aza since growth/weight issues put you in the moderate category .
Ask the Gi about maintence drugs since the minute she has a bite of food inflammation tends to start again
 
Muppet - Oh Jack complains about how I never let him have enough xbox time, computer time. Make him do the dishes, clean his room, shovel snow, mow the lawn and on and on and on.
But rarely complains about taking his meds, or going for tests. The only thing he complains about is having to drink an Ensure as he is leaning over the sink taking a drinking then washing his mouth out with water 3 times for each sip. It's not that bad I've tried them. The only one I thought was awful was the Boost 1.5 as I felt like I was drinking pudding.
Ah, OK. Yes, Sarah complains endlessly about chores, lack of time to talk to her internet boyfriend, on and on and on. I still boggle that whining seems to be such an instinctual thing for teens, in that they seem to think it will get them what they want, while it drives us up a wall and makes us want to strangle, not accommodate, them.

LOL @ the ensure melodrama.

OK, so we're on the same page then. Sarah is pretty stoic about hospital visits, doc appointments, tests, etc, but she's definitely not shy about reminding me of her joint pain (regardless of how bad it is at the moment) when there's a chore she'd rather not do, etc.
 

CarolinAlaska

Holding It Together
Regarding maintenance meds... I think I caught my GI offguard with that question. She isn't used to doing EEN, and I imagine she is doing research now regarding the answer to that. "Jaedyn isn't your typical Crohn's patient," she keeps reminding me. I guess I'll be keeping her on her toes.

For those who are doing/have done EEN by tube feeding... Did you have to go inpatient to get it started? That was one of the GI doc's recommendations...
 
Some do and some don't. Her GI had a home health care nurse come to or house to put the n-g tube in. Grace's stays in all the time. Given her young age, it's just easier.
Will she be doing feedings at night? I would take it that way.
You said she's not the typical patient, what did you mean by that?
 

CarolinAlaska

Holding It Together
Some do and some don't. Her GI had a home health care nurse come to or house to put the n-g tube in. Grace's stays in all the time. Given her young age, it's just easier.
Will she be doing feedings at night? I would take it that way.
You said she's not the typical patient, what did you mean by that?
She will be having her feedings day and night since she doesn't go to school with the option of taking it out for short periods to do social events, etc.

I think she keeps saying that because maybe she isn't convinced of her own diagnosis? I'm not sure... She has been a little wishy-washy. I think maybe because she doesn't have rectal bleeding, diarrhea, fevers, etc? Since Jaedyn is presenting with delayed onset puberty and failure to gain weight/thrive, I wonder if that throws off her decision making. She even suggested that an option might be wait to see if she gets worse. Um, no, I'm not willing to leave her untreated just to make you more comfortable with the picture. If you think she has Crohn's, let's move on and treat it!!!:frown:
 
Many of these kids don't have bleeding.
Grace's GI said once she can't have IBD because she doesn't have diarrhea.
Well.......she does.
In his defense he did say sorry when he called with the dx.
 

my little penguin

Moderator
Staff member
No diarrhea here either just constipation.
Only minor bleeding until recently.
Please look at the ped research section
Many papers to give to your Gi.
On treatment course drugs classifications etc...
I would recommend a second opinion at a major ped Ibd center
We had to do that .
But since she is the only ped Gi I the state not seeing that happen. :(
Failure to grow puts her in the moderate category period.
She needs a maintence med.

EEN can not keep her there because she will go back to food.
Push for a maintence med .
 

CarolinAlaska

Holding It Together
One thing at a time. We need to get her treatment started, then I will talk to her further about starting the maintenance meds. I did bring in up, so I hope the wheels are churning without my having to do anything more, but the way things are going now, it may not happen without my pushing.

J's peds GI is the one that diagnosed her, and fairly quickly. She suspected Crohns from our first visit. Why she is not being as aggressive as people are recommending on here is what I'm trying to figure out. It may be because I dragged my feet about the prednisone in the beginning and because she isn't used to doing the EEN, but I think the wheels are moving. I do appreciate that she wants this to be a team effort between us and her in figuring out where to go. I just wish she showed a little more forwardness in helping us to understand our options.
 

CarolinAlaska

Holding It Together
I wonder how many other cases of ped. IBD she has? She may be learning as she goes…?
I don't know how many, but she is an older physician and has been practicing a long while. I think that EEN is just something she hasn't had to do much of. She said it usually isn't wanted by patients so it isn't used much. When you read about it, it seems that Americans in general don't want it. I wonder if that is because they don't see it as a valid alternative to drugs. She admitted that "most" of her patients go right to prednisone when diagnosed. That may be because they present differently? Or it may be because she doesn't offer any alternatives. She didn't offer anything else to me until I read up on it myself and asked.
 

my little penguin

Moderator
Staff member
Nope std US is prednisolone .
The studies on EEN use in peds are recent past 10 years.
Our Gi had never tried it before DS .
Pred is easy , cheap, and fast so they know the kid will improve.
EEN is expensive - most insurance will not cover it.
Parents can not fathom an ng tube for their child.
Most parents will not make their kids drink it or will let them cheat " just a little bit"
Plus EEN is more effective in small bowel vs colonic disease.

So that is probably why they go with what they know works since compliance is a big factor.
The reality is EEN heals things up in mild disease by reducing inflammation so the maintence meds can keep things under control.

Some docs like to try pred get things under control and if the child flares again
Then start all over again with the pred but add maintence meds this time.
This process is very old school.
Even cchmc recommendations which are 5 years olds by the way do not follow this

http://www.cincinnatichildrens.org/...9199/488d3bf6-5f6b-47ca-b263-9805277ba18b.pdf
 
Dr. B has already told us that EEN is really unlikely to work for Sarah's UC, but has still scheduled us to come in two weeks from now for an NG tube in-service and to talk with a nutritionist about EEN... which doesn't seem to make sense. I haven't asked him about it because I think the answer will be "well if you don't want to pursue it we'll cancel" which I don't think is productive.. kinda confused right now.
 

CarolinAlaska

Holding It Together
Muppet, even if EEN doesn't work in UC, supplemental EN could be very valuable for helping her get the nutrition she needs, help with growth and regaining her weight... It may not be a stand alone solution for her, but still could be very beneficial. Don't throw the baby out with the bath...
 
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