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



## CarolinAlaska

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:


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## Catherine

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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## Hope345

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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## Patricia56

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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## Dexky

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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## CarolinAlaska

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


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## Hope345

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
.


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## jmckinley

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.


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## Clash

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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## CarolinAlaska

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:


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## Farmwife

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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## CarolinAlaska

Does anyone know a good goal for weight gain/growth?  2 lbs a month?  4 lbs a month?  1 inch/month?


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## muppet

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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## Clash

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.


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## CarolinAlaska

muppet said:


> 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?


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## Tink572

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.


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## muppet

CarolinAlaska said:


> 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.


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## crohnsinct

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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## Jmrogers4

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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## crohnsinct

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.


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## Sascot

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.


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## jmckinley

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


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## Johnnysmom

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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## Patricia56

> 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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## Hope345

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


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## kimmidwife

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

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

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

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

Dusty. xxx


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## Farmwife

My Grace is doing EN. I love it. I hope she does well!


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## crohnsinct

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?!


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## muppet

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

crohnsinct said:


> 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

muppet said:


> 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.


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## CarolinAlaska

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...


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## crohnsinct

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.


----------



## Jmrogers4

CarolinAlaska said:


> 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


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## CarolinAlaska

That is what I've wondered too


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## CarolinAlaska

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

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


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## Catherine

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.


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## Farmwife

Hugs
We've all been where you are and some of us are still there.
I'll pray that things get going in the right direction soon.:rosette2:


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## kimmidwife

Sending hugs and prayers! It is hard but once you get her on the right path hopefully you will see quick improvement.


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## CarolinAlaska

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:


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## Tink572

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.


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## Jmrogers4

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:


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## DustyKat

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:


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## Dexky

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

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!


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## Twiggy930

: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.


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## CarolinAlaska

DustyKat said:


> 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:


So true!


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## CarolinAlaska

Dexky said:


> 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.


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## CarolinAlaska

crohnsinct said:


> 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.


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## CarolinAlaska

Twiggy930 said:


> :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


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## Patricia56

CarolinAlaska said:


> 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?


----------



## Niks

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:


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## Twiggy930

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

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!


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## erinsmom

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


----------



## muppet

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


----------



## CarolinAlaska

muppet said:


> 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

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

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:


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## Jmrogers4

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


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## muppet

CarolinAlaska said:


> 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.


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## Johnnysmom

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)))))


----------



## muppet

We're going in 3 weeks to discuss EEN with the Boston folks. Can't wait.


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## my little penguin

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


----------



## Jmrogers4

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.


----------



## muppet

We definitely don't have any issues putting on weight here, but I do worry about balanced nutrition and consistent hydration.


----------



## Jmrogers4

FYI - Vital Jr. has been renamed to Pediasure Peptide according to the website.


----------



## my little penguin

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

muppet said:


> 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

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

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...


----------



## Hope345

Carol,
I wish your daughter the best.


----------



## Patricia56

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

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

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!


----------



## kimmidwife

Good luck! Glad the doctor is on board with trying EN! It is nice when you find a good doctor that is willing to listen.


----------



## erinsmom

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


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## Jmrogers4

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

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?


----------



## muppet

Jmrogers4 said:


> 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.


----------



## Jmrogers4

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


----------



## Jmrogers4

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

^^^ 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

Jmrogers4 said:


> 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

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...


----------



## Farmwife

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

Farmwife said:


> 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:


----------



## Farmwife

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.


----------



## Twiggy930

My son was given NG tube instruction as an outpatient.  It only took about 1 hour.


----------



## my little penguin

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

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.


----------



## Dexky

I wonder how many other cases of ped. IBD she has?  She may be learning as she goes…?


----------



## CarolinAlaska

Dexky said:


> 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

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


----------



## muppet

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

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...


----------



## CarolinAlaska

my little penguin said:


> Nope std US is prednisolone .
> http://www.cincinnatichildrens.org/...9199/488d3bf6-5f6b-47ca-b263-9805277ba18b.pdf


Thank you, thank you, thank you for this link!!!  Thanks for the other info as well.  I'm drooling over it now, but have to go see a pt...


----------



## muppet

CarolinAlaska said:


> 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...


In Sarah's case there's no failure to thrive. She's around 5' 6", maybe 5' 7" and if anything, she's very slightly overweight. Definitely not a stick.


----------



## Dexky

CarolinAlaska said:


> 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.


I think you nailed it Carol!  It was certainly never mentioned to us as an alternative to pred!


----------



## kimmidwife

it was never mentioned to us either. If it wasnt for this forum we never would have heard of it. When I asked the doctor why it was not mentioned or offered he said exactly what you did most Americans have no interest in it they only want to go straight to drugs. I think this is an unfair presumption on the part of physicians and it should be offered to parents and let them make the choice. Problem is like MLP said prednisone is cheap and easy to use. EN is more expensive and requires more effort on the part of the physician as well as the parents.


----------



## CarolinAlaska

Muppet, glad to hear it.  I made an assumption, but glad to hear I was wrong.  For us the weight issue is the biggest problem.


----------



## CarolinAlaska

I sure hope my GI and ped come up with a plan tomorrow.  I've waited two days for the GI to call the Ped with a plan so we can start the EEN.  Crohn's is definitely a waiting disease...

I've also had a few wonderings.  Does anyone know if recurrent lymph node swelling in the neck/recurrent sore throats has anything to do with J's Crohn's?


----------



## Dexky

Have they tested for strep?  What does your ped say about the sore throats and lymph nodes?


----------



## CarolinAlaska

Yes, off and on we've checked for strep.  I guess I'm just looking for correlations now that I have a diagnosis.  She isn't having fevers or much problem with it now, but had recurrent problems this year...  leads to antibiotics about 3 times a year.


----------



## Clash

My son had lymph node(neck) swelling pre-dx, I think that is part of the reason the GP kept saying infection, viral blah blah blah. Then shortly after starting remicade he had it again which flipped me out a bit. I've gotten it checked each time and never seems to be any rhyme or reason to it. Although, C has told me he always knows when his allergies are going to flare because his lymph nodes swell.


----------



## Sascot

No idea on the lymph nodes, sorry.  Just wanted to wish you luck with the EN!  My son managed the 8 weeks fine via the NG tube, he actually coped alot better than I thought!


----------



## CarolinAlaska

Well, we have a date now.  Next Tuesday they are going to start J on her EEN.  It will start as inpatient so we will have support in the start, get through questions of "is this right", make sure we can do it on our own, start 1/2 dose and advance slowly, etc


----------



## Farmwife

I'm glad you got a date. 
I hope it helps. 

HUGS


----------



## Hope345

I'm happy to hear it is all in the makings..
Hopefully this will get her feeling well and gaining some weight


----------



## Jmrogers4

Glad you got a date, will be waiting to hear how it goes on Tuesday


----------



## Catherine

Also glad you have a date.


----------



## my little penguin

Woohoo
Good luck Tuesday !!!


----------



## CarolinAlaska

I'm going to update on Jae.  Many of you saw on another post that Jae was in the hospital on Tuesday and this morning to get her NG tube placed and EEN started.  It was a disaster from the start.  We ended up coming home before noon today with no NG tube.  Couldn't get it started, Jaedyn was traumatized by the first efforts, tried two other times then decided it wasn't for her.  She has changed her mind that she can drink all the Ensure, and kept a really good attitude today.  She only had 5 to finish today, but it is the most she has ever drank in one day.  Tomorrow she will have 6, then from Friday on for 8 weeks she'll have 7 a day.  The pediatrician is watching her for refeeding syndrome since she doesn't typically get that much nutrition.  Tomorrow they will draw blood and check some electrolytes.

I'm wondering what is helping my daughter so much in what we've been doing since her diagnosis...  she hasn't had joint pain since last November or December come to think of it.  I'm wondering if it is the Vitamin D3...  hmm!  Or perhaps bringing her home to homeschool (decreased stress)  Or is it completely getting her off the gluten since she got her Crohn's diagnosis - that is definitely a trigger of her GI sxs...  She still cycles and has bad days of abdominal pain without rhyme or reason, but she seems to be having more good days than bad.  For example, many of you saw that Jae was able to eat a steak dinner on Monday night with corn and beets for her "last supper" (before starting EEN).  She tolerated it well, but did have a little pain on Tuesday at hospital (may also have been the stress of the day).  At any rate, today I am much more hopeful that tomorrow brings more healing, weight gain and a healthy girl in remission with this EEN too.

Now, I'll go to bed since it's 10 oclock and I'm pooped from the past two days at the hospital, working this afternoon, and coming home to my 3 kids I hadn't got to see much of while in hospital with Jae...  Lovely bed!


----------



## Maree.

Fantastic to hear that things are back on track.


----------



## Sascot

That's a shame she struggled with the tube.  I hope she continues to manage to drink it herself.  Love my own bed too!


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## Jmrogers4

Glad she is doing so well.
Had to google refeeding syndrome I had never heard of it.  
Hope you had a good rest and let me be the first to say Good Morning!


----------



## Hope345

Carol, I am so sorry to hear that your daughter had such a rough couple of days.  At least you know that is not the route that is best for her and she is willing to try the drinks at home.   I wish her the very best.
I noticed you asked about swollen glands.  Does she still have them:  b's neck felt sore to her for a day or too also.   Not sure why?  flu season, so I didnt worry.

Prednisone treatment: When our daughter was first treated, we did not know about other treatments available.  After treatment started, I saw that our GI followed the standard procedure in the U.S. at the Mayo clinic, and another major clinic in Israel.  I am not sure if it is outdated to use Prednisone first, but  when you are in a severe flare, Prednisone acts quickly.  I still have no regrets.  It was short term and because of the fast acting Prednisone, there has not been any major damage done to B's colon, thankfully.

Joint pain:  that is so great she is not experiencing joint pain now.
I attribute a lot of B's pain to growing at this age, and usually it is.   Not always true when you have Crohns though.  As moms we cant help but worry 

Let us know how she is doing ...


----------



## my little penguin

Hugs
Glad she is drinking
After she has been on feeds for a few weeks ask about upping her calories.
DS was on 7-8 shakes last year when he was EEN only.
He weighed about 50lbs at the time .
Now weighs 70lbs .


----------



## CarolinAlaska

Jaedyn has drank a new personal best - 6 cans in one day!  

MLP - She says she is not hungry during the day.  She'll be doing weekly weight checks with the pediatrician, and will discuss increasing her Ensure if she needs to.

Julie - she doesn't have swollen glands really now, but she did in the fall when she was having a lot more problems.  I was just trying to connect the dots.


----------



## CarolinAlaska

Well, she's made it through 2 days of the full dose of 7 Ensures.  She has to drink one can every 2 hours, which she only does if reminded.  She's done it though.  Yesterday she felt sick to her stomach, but not as much today.  Both yesterday and today she had diarrhea - yesterday's was painful.  I'm sorry about this as she hasn't had to deal with diarrhea since her cleanouts for scopes in December.  I hope she doesn't have 8 weeks of it now.  She is also having a lot of gurgling since starting the Ensure.  Is this normal?  Tonight she is having joint pain in her knees.  I hope it is just from sitting wrong or from helping with the snow shoveling yesterday...  sigh.


----------



## Sascot

She is doing so well drinking all those cans.  I remember Andrew feeling a little sick on and off if he felt he had taken too much Modulen. His tummy gurgled too.  As for the diarrhea, I don't think he had that problem.  I know his stool was softer than usual (and maybe a different colour) but he still only went twice a day as usual.  Hope her knees settle down, I'm sure it's just from the shovelling - thinking positive for you .


----------



## Tesscorm

These kids are so strong!  It can't be easy having 6 or 7 shakes in a day! :ghug:

Stephen did have diarrhea throughout his six weeks of EEN (dietitien said it sometimes happens) but he had no pain or urgency associated with it.  I hope it settles for her, as well as the knee pain! :ghug:


----------



## my little penguin

Yeah that 
DS was all liquid or very loose but only once a day .
Glad she is drinking

Drinking too fast or too much at once made it swishy.


----------



## Jmrogers4

Yep, Jack complained about stomach pain about 2nd day of 7 bottles (we still haven't made it to 8 per Rx) said it wasn't bad just uncomfortable after my 1000 questions he said he just thought it might be because his stomach was so full.  I don't know if he has felt that in years.  He stayed the night at a friends for a birthday party and brough all his drinks with him.
Hope the joint pain is from shoveling snow as well and it goes away quickly


----------



## CarolinAlaska

I started a blog regarding Jae's journey with Crohn's if anyone is interested in reading it:  http://apathnotchosen.blogspot.com


----------



## CarolinAlaska

Well Jaedyn is not adjusting well to the 7 cans a day.  She is still getting them in, but she feels sick whenever she drinks the stuff and spends a lot of time laying around waiting for her stomach to feel better.  Poor girl.  She thinks now if she drinks water when she is drinking the Ensure that it settles her tummy better, but I am not so sure that is isn't making her feel fuller.  I have asked the nutritionist to get us some samples of other formulas that might be easier for her to digest.  I hope we get them soon.

Today she gave a stool sample for DH to take in for the fecal calprotectin test.  That was a hoot.  It was so slimy and runny he had to use a spoon to scoop it into the container.  He asked Jaedyn if she would just catch it in the container, and she said because she doesn't know if it is going to come out calmly and obediantly or all in a rush getting all over.  Apparently this one was all in a rush...  Ew!  Good thing we had the "hat" to put in the stool to catch it!


----------



## CarolinAlaska

She has made it to her 2 weeks (on EEN with Ensure) point today.  She is up 2.5 lbs from the start and 1 lb from last week.  She no longer feels sick when she drinks and usually her stools are partially formed (described as shaped like little worms) although yesterday and today she had diarrhea.  No abdominal pain for almost a week (except when examined).  Fecal calprotectin from last week still pending.  She has had some stinky gas the entire time on Ensure.  Right now Jaedyn and her dad are meeting with the nutritionist to discuss whether she is getting enough, giving a trial of Peptamen Jr, and water intake.


----------



## Jmrogers4

Yay! for weight gain. Wish I had answers for you on stinky gas.  Jack's has always been extremely stinky but then so has his brothers and of course they like to try and out stink each other. (The joys of boys).  Let us know how the nutritionist visit went.


----------



## CarolinAlaska

No changes with the nutritionist.  We got two cases of Peptamen Junior, but Jae says it tastes like vomited hot chocolate (makes sense since it is predigested, right?!) and so far it is a no-go.  Will stay on same number of Ensure for now.  Everyone seems pleased with the pound a week progress...

Jaedyn admits the stinky gas is not new but has been consistent throughout the time of EEN.  I guess that is somewhat reassuring.


----------



## Jmrogers4

Jack didn't like the Peptamen Jr. either he didn't try the chocolate as he doesn't like regular chocolate so that would have worked.  He doesn't mind the Peptide, doesn't really like the ensure, his favorite if you could call it that would be Boost.  Glad she is okay with ensure.  I figure if you can find one they will drink then we are one step ahead.


----------



## CarolinAlaska

Jmrogers4 said:


> Jack didn't like the Peptamen Jr. either he didn't try the chocolate as he doesn't like regular chocolate so that would have worked.  He doesn't mind the Peptide, doesn't really like the ensure, his favorite if you could call it that would be Boost.  Glad she is okay with ensure.  I figure if you can find one they will drink then we are one step ahead.


Especially since Jack and Jaedyn are drinking the stuff instead of putting it down a tube.  We are very limited on what they can tolerate to drink...  I wish we had other ones to try, but since we're rural we don't get a lot of reps here encouraging with samples...


----------



## my little penguin

Glad she is still drinking it.
That was all our Gi wanted as well just one he would drink .
He couldn't stand peptide , never tried ensure ( due to soy protein)
Loved boost but Gi wanted at least semielemental for EEN .
So peptamen it was.

One pound a week is a good start.


----------



## crohnsinct

Ditto one pound a week is a good start.  As the EEN heals inflammation she will absorb more and more.  GO JAE!


----------



## CarolinAlaska

So here we are, 2 1/2 weeks into the 8 weeks of EEN, and Jaedyn is having too much abdominal pain to finish 7 cans a day.  So far today she has only drank about 2 cans.  She said she is willing to let us put her under to get the tube down her, but I am wondering if that is going to work now.  Why is she not getting better?  Is a different formula going to make the difference, or should we go to prednisone now and let it back off the inflammation so the EN will help?  I feel we haven't made any progress and I'm very frustrated.  My little bit of hope is sopped down by all these what ifs again...   Add to this the fact that our GI doc just went on vacation until 3-9-2013.


----------



## Jmrogers4

OH! Big hugs Carol.  I certainly wouldn't rule out a formula change.  Jack complained of random stomach pain with the Boost but hasn't at all with the Peptide.  We tried to get him to drink an Ensure or two a couple years ago and he couldn't do it, said they made his tummy hurt and I didn't push as it was more of a you could try this if you are worried from his doctor, as opposed to now when it is a you need to do this or else kind of thing.
That being said I don't know if I would have changed the initial dose of pred we did when Jack was first diagnosed it certainly got things under control quickly and after he had been sick so long it was so nice to see him with some energy and hungry.  You could do both as well, pred to get inflammation under control and EN to get the weight up.  Just an idea.
It is so hard when you know it will help them and they need the nutrition but if it is causing pain when they have already dealt with some much pain you don't want to push it.


----------



## Farmwife

I know how your feeling, FIRST HAND.

My suggestions
1- New formula like Slash that Grace gets
2-Is she on Zantac or a PPI. I've heard the formulas can cause a lot of acid or something to that effect. We had to put Grace on these.
3-Can they sedate or give Valium to help calm her during the NG tube placements???


We HAD to add the pred but.........we are still doing EN. Maybe she could have a low dose for a short amount of time to get things settled down.


----------



## my little penguin

Hugs...
Have you tried the peptamen ?
Fwiw for DS 
He was on supplemental kids boost from march 2011 to oct 2011.
It really didn't help and he kept getting worse.
He did EEN on peptamen jr + 6-mp from nov 2011-feb 2012.
He got a little better. Sed rate /crp went down but he didn't feel good at all.
Even two weeks of high dose pred then taper in feb - didn't take it all away.

Unfortunately - she didn't get this way over night and it takes alot of time to undo the damage.

Personally ( again not a doc just a mom)-
I would start whatever maintenance med your going to do ASAP.
I would also start peptamen since its easier on the gut with pred to just get her better .


----------



## Clash

Just wanted to send hugs and support. We really have no experience with EN. C was trying to supplement with Ensure for weight gain and like Jack he complained of the occasional tummy aches or cramps. Trying pepten Jr might help. Hugs!


----------



## CarolinAlaska

Jaedyn says Peptamen Jr tastes like vomit.  She won't drink it.  Does Peptamen taste better?  We tried some Digestzen (essential oil) on her tummy and that helped. I think she is on her can #6 now of Ensure.  We see the GI on March 13 and I'm pretty sure they are going to start her on 6-MP at that time.  I just don't know if we are going to make it on what we are currently doing that long, or whether we will have to put her under to intubate her so we can use peptamen junior, or if we can find another formula she will be able to drink and tolerate... sigh.  I just want her to start feeling better and be one of those ones who responds quickly to this untoxic way to do things and to gain weight and grow...   Is that too much for a mom to ask?

Thanks everyone for your support... I knew I could count on you!  :heart:


----------



## my little penguin

Peptamen junior is for those under 13 for complete nutrition.
Peptamen is for over 13 so ..... She is in between . As far as taste 
Both are horrid but I am not trying to sound mean but... 
This is her health not a choice of whether she wants to eat her vegetables at dinner or not.
Doctor ordered meds including peptamen are taken period.
Ask jmrogers 
I sat for three days - all day with a screaming crying kid who threatened to vomit 
Plugging his nose to get him to take a sip of peptamen jr.
Every few minutes "drink" -day one resulted in one shake down
Over many many hours .
Now he can chug one if needed in five minutes. He still prefers straws to by pass the taste buds.
To put it bluntly increased weight increases her chances with this disease .
From what you stated she is severely underweight.
Things in life are not fair and having to drink foul formula is one of them but it just is.
Either it goes in by mouth or tube period.
I don't understand how she was allowed to leave without the tube.
When your nutrition is so compromised the body starts to protect itself by stalling things like weight gain/growth.
Next comes organs including the brain.... So very important to get fixed .
Jmrogers can give you tips as well since her son was older and would not drink boost ensure etc...
But when push came to shove and it was a plan per the Gi then he had to drink it.

I know its hard but TPN is harder and not I place I ever want to have to go with DS..
So foul tasting peptamen is that insurance to keep him healthy growing developing and give us a cushion in the next flare .


----------



## Jmrogers4

Pepatem and Pepatem Jr. are yucky.  We use Pediasure Peptide.  Jack's GI gave us samples of all 3 and none of them were good but the Peptide was by far the least offensive and so we went with that.  I can tell you that from my perspective as well because I tried them all as well.

I gave him the samples and said this is not optional so you have to find one of these you can stand to drink.  He still stood over the sink taking a sip and then rinsing his mouth with water and both of us crying the first day or so.  I went out and bought him a Thermos just like this and it kept it cold and he was able to sip from it.  It still took him an hour to drink one but after a couple of days he got used to the taste and can now drink one in about 5 minutes.  We would also hand them to him to drink when he was preoccupied with something else.  We wouldn't say anything, just hand him one and he would drink it.

It is all worth it when I look at him and see cheeks instead of guant hollows where they should be and some color in them and some sparkle back in his eyes instead of dark circles beneath.  We are seeing a decrease in the fatigue, he is not waking up just as tired as when he went to bed.

Yes we did have the issue about drinking them at school earlier this week and I asked him for a solution as he had to drink them no matter what we just needed to figure out how to make it work.  He came up with the solution and it has been working.  I think it was a teenage thing and he was feeling like too many things were happening that were out of his control.
I told him he needed to find a way to make it work and we would back him whatever that may be but this was just like his medicine it is non-negotiable.  He could come home with purple hair and we would negotiate if he would get to keep that as a teenager but when it came to his health and safety those would non-negotiable items.

Sorry this is so long.  I hope you find a solution that works for her.  We didn't go the EEN route from the start we did prednisone.  We are not trying to get him in to remission but the GI and his Ped are exceedingly worried about his weight and are concerned it may start effecting his organs and are under the firm belief as I am that we will not see any signs of puberty unless and until we get some nutrition in him and some weight on him.


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## CarolinAlaska

Heading to the hospital tomorrow morning to get the NG tube under anesthesia.  Jae isn't getting more than 5 cans of Ensure down a day right now and having a lot of belly aches, diarrhea, nausea, etc.  Hopefully with the tube, she'll be able to get more nutrition, and better formula into her.  Pray all goes well!


----------



## Sascot

Good luck!  Sorry to hear she hasn't been managing to feel better on that formula.  Don't know if you have it there but I was told that Modulen has anti-inflammatory properties as well.


----------



## upsetmom

Good luck i hope everything goes well.


----------



## kimmidwife

Good luck today. Definitly ask about trying other formulas that are less harsh on the stomach especially as she won't have to taste it now. If you end up needing steroids ask about budesonide also called entocort. It has a lot less side effects then prednisone and seems to work very well for a lot of kids. It is mainly absorbed by the gut which is why it gives less side effects.


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## CarolinAlaska

Tube is in.  It went well.  She says it feels a little scratchy.  The nurse and anesthesiologist said they understood why they couldn't get it in the first go round because they found they had to work it with a lot of twisting and turning to get it down.  Thankfully her nose doesn't hurt now like it did last time after trying. 

We're getting samples of different formulas to try.  Will start with peptamen junior as that is what we have on hand.


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## Jmrogers4

Oh I'm glad it went well and tube is in.  Hope this makes all the difference for her and she can start feeling better and gaining weight.
Keep us updated please.


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## Bubbly

Wow what a time you have had, both of you. My son is 14, very small, in height and weight, sombody thought he was 10 last week!! He was diagnosed 18 months ago, put on modulen, was supposed to drink 8 a day, only managed 5 a day, lasted a week, refused to drink them, ended up in A&E!! Put straight on steroids, developed moon face, and gained weight, tapered down over 12 weeks, however ended up with strictuplasty surgery last may, everything seemed ok, however its all gone wrong again, just had scopes and mri, find out treatment plan on thursday, think it will be surgery, resection, we have read and read so much, and it is a very frustrating time, a steep learning curve for all, and the worse bit is alot of people dont understand the first thing about crohns!!

NJ tube wasnt suggested to us at all in the UK, it doesnt seem to be used very much at all for teenagers.

As said in previous post by somebody, all children react differently to different treatment plans, so it does take a while to find something to suit your child.

I really wish you both well and that you find a formula that suits.

Good luck and look forward to hearing progress report x


----------



## my little penguin

Hugs glad the tube is in.
Really hope it works for her.
As far as pred vs Entocort .
Entocort only works on the lower Gi tract . If she has any inflammation higher up - then the doc will probably go with regular pred.


----------



## CarolinAlaska

my little penguin said:


> Hugs glad the tube is in.
> Really hope it works for her.
> As far as pred vs Entocort .
> Entocort only works on the lower Gi tract . If she has any inflammation higher up - then the doc will probably go with regular pred.


Lower than what point?


----------



## my little penguin

http://www.medsafe.govt.nz/profs/datasheet/e/Entocortcap.htm

For DS it wouldn't work since he has /had inflammation in his duodenum , stomach and esophagus . 


If she is small bowel only then maybe


----------



## Tesscorm

Carole, I'm so sorry I've missed so much here!!   Poor Jae, so sorry she's had to go through so much!

I am glad the tube is in!  Hopefully, this will help!  And, if necessary, makes it so much easier to change up formulas as taste will no longer be an issue.

Lots of luck! :heart:


----------



## Clash

I've missed alot, so sorry she continued to have trouble but so glad she was able to get the tube down.

If this becomes the treatment for C we may have a bit of trouble since he vomited with the first one in and it came out his mouth. I've tried to tell him it isn't the medical emergency he felt it was but I think it was just tramatizing with everything else that was going on that week. But I'll cross that bridge when we get there if it is necessary then he'll just have to adjust.

I hope the EN goes well and she is healing quickly now! Hugs and Support!!


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## CarolinAlaska

She is feeling pretty sore in the nose and throat right now.  They say it takes about 3 days to get used to it before you don't notice it any longer. 

She is sleeping in the recliner tonight so that she can keep her body at a 30 degree incline, per a site we read on the internet...  I hope she has a good night.  Tomorrow we can get her a wedge pillow.  Is this something other GIs are having their EN patients do who get 24 hour or night feedings?

She has not had any tummy aches on the new formula (Peptamen Junior right now) and had one soft but formed stool.  Yes!

This was a pretty hard day on her 15 year old sister, who worried about her all day.  She ended up crying in choir because the stress of it all was too much.  She pulled out her journal that she hasn't written in for a year to help get things off her chest before bed tonight.

No one at the hospital knew who was supposed to be showing DH how to do the feedings once the tube was in.  I was at work, but having never done this sort of thing, wouldn't have been much help.  The people at the medical equipment store gave him a DVD about the pump, which he said was helpful, but left a lot of unanswered questions.  Our nutritionist was sick at home, but called me this morning and told me there was a nurse at the hospital who would show her how to do it - no one at the hospital knew who it was or could figure it out.  This is life in rural Alaska with chronic health issues, I suppose.  

Thank God for the internet!  DH, once he found out, found some good sites that walked him through the procedure of how to hook up the tube to the pump and so forth.  Jae was pretty hungry by the time the food started to flow around 1:30 pm! :ysmile:


----------



## Tesscorm

Glad you were able to figure out the pump!! 

Be prepared for 'flow errors'!  Murphy's Law applied, of course, seemed to happen to us tons of times at the beginning when we didn't know what to do, hasn't happened in ages now!  :lol:  

I am assuming your pump/set-up is similar to ours...

Causes - tube is kinked (simply unkink) or 'squeezed' - (excuse the completely 'unmedical' terms that follow!  :lol If you leave the wheel in the closed position for a long while (the little wheel that moves up and down and is used to open/close the tube), can sometimes leave the tube 'squeezed' even when you open the wheel.  Slide the wheel mechanism up or down the tube and simply unsqueeze the tube with your fingers.  (You'll know what I mean when/if it happens...)

Particles on the 'eye' of the pump - where the chamber sits (chamber is where the formula drips), there are one or two sensors that 'see' the drip and beep (flow error) if the drips stop, make sure the 'eye' is clean - dust particles, etc. can cause the pump to indicate a problem.

Make sure to open the wheel when you want to start the flow - when you fill the bag/bottle with the formula, the wheel is in a closed position, don't forget to open it.

Pillows, elevated sleep - Stephen's never done this and it hasn't been a problem, however, it does make sense that the elevation would help.  There is a flap (again, medical terminology here! :lol between your stomach and esophagus that blocks acid from escaping into your esophagus, when the tube is in place, it forces that flap to remain a bit open.  Being elevated probably helps minimize the acid from moving up.  Also, Stephen takes a nexium each night before the feeding - has had heartburn on the nights he's forgotten to take the nexium (we were told this is why he was prescribed nexium).

The sensation of the tube - yes, Stephen said it bothered him the first couple of days and then became accustomed to it.

To help keep the tube in place at night, I would loosely clip the tube to his t-shirt with a small hairclip. Again, something that helped at the beginning but the tube doesn't bother him now... 

Noise of pump - this really bothered Stephen at the beginning...  you can try to muffle the sound with towels wrapped around the pump (but don't kink tube).  I actually removed the pump from the stand, positioned it in his night table drawer and covered it with the towel (leaving space for the tubes) - this seemed to muffle it enough.

As she's not ingesting the formula through the tube, you can try to give it to her at room temperature (taste isn't an issue), I think it's easier on the stomach rather than cold from the fridge.

Hope some of this helps!


----------



## Maree.

If the sound of the pump is an issue, one of the best ways to deal with annoying/irritating sound is to blend them with relaxing comforting sounds.  A soothing CD played on repeat can be good for this.  Merging sounds you like with irritating ones if the main approach to treating tinitus (where ear generates sounds that aren't there) & hyperacusis (extreme sound sensitivity) and there is really strong research to support it as a way to address stressful noise.  I have a recording of storm in a forest which I always play for a few days when I'm in a new environment with noises that irritate me (buzzy airconditioning etc), blending the sound really speeds up the process of getting comfortable with the annoying ones.


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## Hope345

sending hugs to your daughter. :heart: what a trooper she is!!
I hope this gives her all the nutrients she needs


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## Jmrogers4

Carol,
Just wanted to say love the new avatar and picture of Jaedyn.  She looks super cute with the NG tube.  As my son would say she is rockin' it.


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## CarolinAlaska

I was really proud of Jaedyn yesterday.  She went with me to the hair salon.  On the way she was hiding in her coat and hood so no one would see her tube.  As the time went on, she came out of her shell.  We both got short haircuts  and when she walked out, she listened to my encouragement to not be ashamed of her tube and to not cover up her supercute haircut.  She even let me take her pic!  I wish you could see the tape - she has painted little characters from her favorite Wii game (Legend of Zelda) onto the Hyfix tape to attach it to her face.  She is very creative that way.  I think she could make a business of it!


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## CarolinAlaska

by the way, she got her first fecal calprotectin test back - it was 639.  It was done the first week of her EEN.  Since her other inflammatory markers have been normal, I think this test will be helpful to monitor how effective her treatment will be.


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## Hope345

Carol,

tell Jayden she is an inspiration to all of us!!   Post her new haircut if she is okay with that...  hugs to you both.


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## CarolinAlaska

Julie, it is now my sig pic - scroll up and you should see it somewhere.


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## Hope345

so cute, she looks like her mama:heart:


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## CarolinAlaska

Especially now, but I do hear that alot.  Only I am huge and she's petite from her Crohn's.


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## upsetmom

Nice pictures Carol....she looks exactly like you.


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## Twiggy930

Love to hear that Jaedyn is getting more comfortable being out and about with the tube.  These kids are so strong!  LOVE the haircut. 

I hope the new formula is making her feel better.


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## CarolinAlaska

Jaedyn had a formed, hard stool today.  I don't even think she had one in February and I don't know when she had the last one before today.  Unfortunately, it was on the hard side, then she had diarrhea a few times.  An awful thing that happened today is that we got her throat culture back from Wednesday.  She has group A strep after all.  She had to go back in and get a big shot of bicillin.  They broke it up and gave it in two shots into her legs.  Is this going to mess up her EEN?


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## Sascot

Sounds like she is doing so well!  Cute picture.  That's a shame about the strep.  I don't think it would mess up the EN - it might be off for a couple days but since she will be continuing the EN it should go back to full effectiveness.


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## Dexky

julie345 said:


> so cute, she looks like her mama:heart:


Wow, she really does!

Hope the strep gets sorted quickly and ab causes no problems!


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## my little penguin

DS had strep three times it did not effect his en .


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## CarolinAlaska

MLP, did he do oral antibiotics or injectible?  Did his EN bring him to remission?


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## CarolinAlaska

Jaedyn had a weigh-in today.  She is up 12 oz (about a kilo).  She sometimes has formed stools now and only having 1-2 stools a day.  She still has abdominal pain, but it doesn't seem too bad.  Her throat is much better and she seems happier most of the time.  You should see her cute pics she makes on her tape for her NG tube on her face.  Next week we see the GI for the first time since diagnosis and starting EEN.  I think we're doing to discuss meds for maintenance, but not sure what she is going to say about Jae not being in remission yet on EEN.  Perhaps she'll suggest pred again (she hasn't had any yet).


----------



## Jmrogers4

Carol,
I'm so glad she is feeling a little better, It's been a month on EEN now right?  Are they going to do any labs to see if things are improving?


----------



## Niks

Glad she's feeling a little better Carol!  Gorgeous pic!!  :kiss:


----------



## my little penguin

DS did not get to remission on EEN.
He was on 6-mp concurrently and did not get into remission so after 9 weeks EEN was stopped and pred /asacol/ 6-mp/allopurinol was started.
Weaned from pred 
More tweaks to 6-mp
Still no remission
So go did another scope and then changed pred + Mtx/asacol
Things got worse so 
Changed again to 
Pred + remicade/asacol
remission
After 6 weeks of remicade .

Time frame from nov 2011 to oct 2012


----------



## CarolinAlaska

Yes, 4 weeks today, but she failed the Ensure just 1 week ago.  She's only been on the new formula 1 week


----------



## Jmrogers4

That is what I was thinking so it is almost like you have just started a week ago.  Most of the improvement has been in the last week, correct? So maybe she will improve even more this next week before appt with the formula change.


----------



## Gingermom

Wow so many great responses! Just wanted to add that my son is 12 and we did one round of prednisone and it really helped bring down inflammation and he gained weight. I would choose that route again.


----------



## CarolinAlaska

She has gained about a lb a week except for the 3 week where she lost a half lb.  We are up 3 lbs in 4 weeks.  (She has gone from the 0.25% to the 0.75% in weight LOL).  That is the only solid improvement we've had.  Stools still go from diarrhea to hard to normal from day to day.  Still experiencing abdominal pain.  The weight gain and the having formed stools are my most encouragement, but not sure it's enough .  I think we'll do labs on the weekend and hold off the fecal calprotectin until we go to Anchorage since it took 16 days to get it back last time.


----------



## CarolinAlaska

Here's another update.  We've finished 5 weeks of EEN.  The first 3 weeks were with Ensure by exclusively drinking it.  She gained 2 lbs during that time, but then started having a lot of GI upset, diarrhea, anorexia, etc and couldn't keep up with it.  She got an NG tube 2 weeks ago and had gained 1 more lb. 

Today we went and had our first followup with Dr Wilson who is her peds GI.  She was pleased with how well Jae is doing and she is starting Jae with 6MP (for maintenance) as soon as Jae gets over this nasty cold that she has right now.  She also increased the flow rate and amt of Peptamen Jr that Jae is getting so hopefully she'll gain a little more consistently.  

In 3 weeks Jae will start reintroducing foods, but will need to stay on the supplementation for nutritional reasons.  We talked about NG tube replacement vs mickey or minnie buttons in 3 weeks when it is time for Jae to replace the tube she currently has.  We also talked about getting a Fecal Calprotectin level in 2-3 weeks to see how much she has improved on EEN.

Jae's bloodwork remains pretty normal.  CBC, CMP, ESR and CRP all normal, except her % neutrophils were high, which suprised me given that Jae has a bad cold (I'd expect her lymphocytes to be high, but perhaps they were suppressed so the %neutrophils was high)...

We were in the doctor's office for a little over 2 hours...  I suppose when you drive 3 hours every 3-4 months, you gotta cover a lot while you can.  It was a very thorough visit.


----------



## Tesscorm

Sounds like a very productive apptmt! :thumright:  I think it's always a relief when you know you have a plan going forward!

Really glad it seems Jae is doing well with the 'normal' bloodwork and gaining a little weight.  

EEN eliminated quite a bit of Stephen's inflammation but, unfortunately, the supplemental EN was not enough to eliminate ALL inflammation, however, I do believe it played a part in controlling what inflammation there was.  While taking no meds, Stephen's inflammation did not increase in almost two years, unimportant now why meds weren't added, but my point is that if you can keep Jae on supplemental EN for as long as possible, I think it can only help - not only for nutrition but also as a aid to control inflammation!

When you're ready to reintroduce foods, let me know if you have any questions.  Stephen's ped hospital were very experienced with EN - I can pass along the reintro diet we were given (I've posted it a number of times so you may have seen it already).

Hope all continues to improve for Jae!!


----------



## Clash

Sounds like it was a very productive visit! 2 hours, wow that is awesome for face time with the Doc we usually average around 45 minutes maybe an hour. The main problem is the doc always side tracks me!! I have my little list of questions and one of them invariably sends him off on a tangent that I have a hard time bringing him back from, out come the charts, graphs, studies when I was looking for a yes or no answer!! HA at least he's thorough.

I hope the improvement continues and that Jae's levels have come down when you do the FC test. I think it is great you are doing supplemental EN, so many have had great benefit from it nutritionally and growth wise!


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## Jmrogers4

Clash said:


> we usually average around 45 minutes maybe an hour. The main problem is the doc always side tracks me!! I have my little list of questions and one of them invariably sends him off on a tangent that I have a hard time bringing him back from, out come the charts, graphs, studies when I was looking for a yes or no answer!! HA at least he's thorough.


That is Jack's doc as well, then he starts talking in medical language and we have to go Whoa! we need you to dumb down what you just said.  I think he believes we know more than we do only because I've read or heard about something (usually on here  )

Carol - I'm so glad Jae's visit went well and you got to spend lots of time with the doc.  I have obviously become a firm believer in EN, Jack has never felt so well since we started.


----------



## CarolinAlaska

Tesscorm said:


> When you're ready to reintroduce foods, let me know if you have any questions.  Stephen's ped hospital were very experienced with EN - I can pass along the reintro diet we were given (I've posted it a number of times so you may have seen it already).


Tess, thank you.  I have seen it, but can't remember where.  I would love to see it again.  We'll be doing the reintro diet in 2.5 weeks.


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## CarolinAlaska

Believe it or not Jaedyn gained 2 lbs 4 oz this week  (over 4 kilos!).  Yahoo! :thumright::biggrin:


----------



## Dexky

Has she started the 6mp Carol?

Glad to hear she's gaining


----------



## Tesscorm

Woohoo on the weight gain! :banana:

Before I forget, the reintro diet we were given was:

Food is introduced in stages, each stage was to last 3-5 days (I stuck to the five days).

Stage 1 - 'white' foods - rice, pasta, bread (any type), potatos, plain muffins, rice krispies (no milk).  A little bit of toppings are allowed (low fat cream cheese, butter, strained tomato sauce, etc. - but just a bit!)

2 - proteins - any type - I stuck with fish, chicken and eggs but we were told pork, beef, lamb, etc. would be fine.

3 - veggies/fruits - soft veggies/fruits, no skin, no seeds (includes poppy, sesame, tomato, seeds in/on berries, etc.), no membranes (ie 'skin' around orange segments).

4 - dairy - low fat dairy, any type

All else as tolerated.  Permanent restrictions are:

- Seeds - Stephen is careful when ordering out to ask if bread comes with seeds, etc., we're careful at home straining tomato sauce/salsa but when ordering pizza, we haven't worried overly about seeds in their tomato sauces and it's been fine
- Popcorn - 'may' also have been corn in general but foods made with corn have been fine and Stephen doesn't like 'real' corn anyway, so we haven't tried corn kernals
- Fruit/veggie skins - GI says we can try skins but, 'pickiness' again comes into play, he doesn't eat many fruits/veggies so hasn't been an issue - we peel apples and he primarily sticks with melons, oranges, etc.

I believe we were told to extend or back up a stage if we encountered any problems - he didn't have any issues, so don't remember exactly what their instructions were regarding issues.

I did go slow with foods that I thought might be a problem, giving him just one questionable food at a time and just a little to begin with, ie steak, beans, granola bars, etc.

Good luck with the reintro!!!  Jae will be soooo happy!  EVERYTHING will taste great at the beginning!


----------



## Niks

Woo Hoo on the weight gain!!  That is amazing :lol2:

What formula is she on? Jaime now on Fortisip Compact which is only 125mls but still 300 calories, she is coping much better with this!

Good luck with re-introducing food.  

:ghug:


----------



## Jmrogers4

Yahoo for weight gain!!  Hope it keeps up.  How is she feeling otherwise?


----------



## kimmidwife

Yahoo for weight gain! Have her symptoms continued to improve as well?


----------



## Clash

Yay for the weight gain!!! Way to go J!!


----------



## my little penguin

:soledance::soledance::soledance:


----------



## CarolinAlaska

Dexky said:


> Has she started the 6mp Carol?
> 
> Glad to hear she's gaining


Not yet, Mark.  She had a bad cold.  The doc wanted her to get over it first, then today got the stomach flu.  I hope soon we can get her healthy enough to start it without wondering what is what!


----------



## DustyKat

Is there anything better than seeing your kids gain weight? I think not!  

I hope it just keeps getting and better for Jaedyn! :heart: 

Dusty. xxx


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## CarolinAlaska

Today Jaedyn had a weigh-in and she gained 3 lbs in 1 week (total gain so far has been 9 lbs in 2.5 months) and has grown .75 inches in past week.  This is the most gain ever.  She is on real food plus 8 cans supplement/day.  She is also on 6MP.


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## my little penguin

let the gaining and growing beginning-
glad she increased-
we saw similar results with DS-
good luck


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## Jmrogers4

Wooohoooo!!!! Long may it continue!
:dance::dance::dance::dance::dance::dance::dance::dance:


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## upsetmom

Great news!!!:dance:


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## crohnsinct

Yep!  O did most of her  gaining and growing post EN.  All healed up and ready to go!  Great news!

P.S. I saw your joint pain thread.  O recently grew 3/4" and has been complaining of joint pain.  Doc says could be cd, coupld be psoriatic arthritis, could be growing pains!


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## Sascot

Yay, that sounds promising, hope it continues!


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## Dexky

crohnsinct said:


> P.S. I saw your joint pain thread.  O recently grew 3/4" and has been complaining of joint pain.  Doc says could be cd, coupld be psoriatic arthritis, could be growing pains!


Yeah, was 3/4 inch in one week a typo?  Even puppies don't grow that fast!!


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## Johnnysmom

Great news!!!!!!

Since all of you weigh your kids (maybe) as much as I do, do you find a big fluctuation in their weight?

Johnny can weigh 126 one day and 132 the next and then back to 123.  The over all trend is up, but maybe I just weigh him too often??:biggrin:


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## Farmwife

Ya!!!!!!!


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## Tesscorm

Great news Carol!!! :banana:  Like Crohnsinct's daughter, Stephen gained more weight once the exclusive period ended and he on supplemental EN plus a regular diet.

Johnnysmom, Stephen's weight fluctuates by 6 to 7 pounds regularly.  Do you weigh him at the same time each day?  I don't mean to say that you should weigh him daily but, if you do, there can be a difference in weight between morning and evening weighings - not 7 or eight pounds but a pound or two plus the normal fluctuations could seem like a lot.


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## Josephine

Great news about weight and her over all health.


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## crohnsinct

3/4" in a week...hahaha didn't catch that.  Maybe they feed em some miracle grow in Alaska! 

Yep!  Obsessive compulsive weighers here in CT also.  O fluctuates only a pound or two though but she only weighs 85 pounds so as a percentage of weight maybe the same.  I think as long as you are trending up that is a good thing.


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## CarolinAlaska

We only weigh once a week with similar clothes, similar time of day in the doctor's office where I work.  That way we don't see the day to day fluctuations, but the overall picture.  The height change was pretty specific because the MA who was measuring her had adjusted her height last week due to measuring it wrong and had double checked it.  Another MA measured her this week and the first MA went to the scale and remeasured her because she didn't believe it, but it was right.  Maybe that is why Jaedyn's been having some joint pains!  She does have a lot of catching up to do.

Did I mention that with 3 more pounds she'll actually be on the growth chart (in the colored part?)!  She hasn't been "in the blue" since she was a baby...  Her current growth in height has put her at 50% (she was at 28% last October)! Her weight in percentiles has gone from 0.25% to 2.4%!  Can you tell I'm really proud of her?


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## my little penguin

We weigh DS every night same place same time it is within a pound or two.
Only because we supplement and have gotten to the point of not wanting him to gain too much....(see it can happen)- we adjust his shakes if he seems to be adding too much too fast.


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## ChampsMom

:banana::banana::banana: Yaaaaa-hoooooooooooo!!!!!!!!!!! :banana::banana::banana:


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## Catherine

Where at the same point as MLP, in trying for no more weigh gain.  Sarah has gain 16kg 
(35 pound) since dx.


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## DustyKat

Thanks so much for the fab update Carol!  Happy, happy, happy for you! 

Onwards and Upwards Jaedyn! :heart:

Dusty. xxx


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## kimmidwife

Nice to hear good news! Thanks for the update!


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## Clash

Awesome news on the growth! We also weigh at the same time and in similar clothes, we used to weigh daily but now just once a week(well I record once a week, I think C actually weighs every time he goes to take a shower...habit I suppose!)


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## Jmrogers4

We weigh once a week now as well instead of daily, athletic shorts at 8pm Thursday night, seems to be maintaining between 98-101.  Drinking 2-3 a day now. 
So glad Jaedyn is gaining and growing.  I probably annoy people with my "look at his cheeks, he has cheeks!" remarks but I've had to listen and bite my tongue for the last 3 years as they have given me "advice" on how to fatten him up.


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## crohnsinct

Catherine said:


> Where at the same point as MLP, in trying for no more weigh gain.  Sarah has gain 16kg
> (35 pound) since dx.


Ummm..yeah o.k. Catherine.  Hard to imagine a girl who swims a 5K race in open water for fun has to worry about weight gain.  Guess that goes to show how good she is doing.  She looks great in the pictures you posted!


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## Catherine

I don't think it a real issue but before her dx.  Sarah could eat anything she liked and never gain any weight.  My daughter eats like a teenager boy.

It more like learning to eat like a normal person again.  Also at 17 and half she has stopped growing.


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## CarolinAlaska

That is a cruel trick of nature, Catherine!  Just when she has an appetite, now she has to watch her waistline!


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## Catherine

Carolin, Sarah has always eaten like a teenager boy.  We were forcing extra food into her prior dx on medical advice.  3 main meals plus 4 snacks, no eating fruit as snack as too low in calories.  Now she unlearning this way of eating.  A good problem to have.


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## crohnsinct

I hear ya Catherine.  Docs are telling us a milkshake a day for Olivia because all the healthy food doesn't have enough calories.  Young fast metabolism plus all that swimming just burns it all off.  Unfortunately my older girl learned the hard way that when the swimming stops you have to stop that eating.  She went to a college without a swim team and is really paying the price.


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## CarolinAlaska

Up another 4.5 lbs in 2 weeks.  Maybe at this rate by the end of the summer she'll be able to take the safetypins out of her swimming suit bottoms!


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## Jane and Nick

Oh that is just wonderful ! I truly needed some positive news, my Nick is loosing fast and it's scary to see. I am so afraid to know what to feed him incase it ends up causing him pain. Well done to the both of you !!!!!!


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## kimmidwife

Such good news! I am so glad the EN is working for her! It is nice to have some good news!


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## Farmwife

I'm so glad she's better with her weight. Do you think a g-tube is worth it now?
How many does she drink now?


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## my little penguin

Woohoo
Glad you are seeing good results
Long may it continue


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## CarolinAlaska

Farmwife said:


> I'm so glad she's better with her weight. Do you think a g-tube is worth it now?
> How many does she drink now?


We mix 4 cans Ensure Plus (Vanilla or Dark Chocolate) with 3 Peptamen Juniors (vanilla) into a pitcher every morning.  She can't drink either drink straight, but can drink it in combo - go figure.  Anyway, she sips on it out of a tall glass with a straw all day.

The MICkey button is on hold indefinitely now, since this is working.  As long as we can find a combo that she can and will drink, we'll avoid the surgery...  I'm so glad we went this route!  She's been pain free for a couple weeks now and gaining weight like crazy!  I don't even ask about her stools anymore!  I guess we'll see how tomorrow goes.  We'll be driving to Anchorage.  That usually makes her sick...  The one thing that isn't happening much is that she still isn't hungry for much of anything else, and I don't think she eats much more than one or two small meals a day - but she can pretty much eat what she wants.  We haven't done steak, raw fruits or veggies yet though.


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## Maree.

Amusingly we use the Vanilla Ensure Powder and Liam loves it (despite the fact it makes his reflux much worse).  Initially I mixed it in to smoothies but then discovered he really likes it straight.  He has managed to convince his 14 year old big brother that it's a special treat!

If we've had a particularly tough day or Owen (the 14 year old) has been particularly fantastic, I'll sometimes let him have an Ensure, which makes him feel very spoilt.


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## Twiggy930

Maree. said:


> He has managed to convince his 14 year old big brother that it's a special treat!
> 
> If we've had a particularly tough day or Owen (the 14 year old) has been particularly fantastic, I'll sometimes let him have an Ensure, which makes him feel very spoilt.


LOL.  My non-Crohnie daughter also thinks of these drinks as a treat!


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## CarolinAlaska

Here's an update.  Jaedyn lost 3 lbs after a bad cold, but has managed to gain them back.  She still has very little appetite most of the time.  Our docs had her check her zinc level because this can cause anorexia and inability to taste food.  Hers was low.  We are going to start her on Zinc supplements (Zinc Chelate 30 mg/day).  The pediatrician recommended 1 mg/kg/day, but that makes 38 mg, and the doses come in 30 or 50 mg.  I'm not sure whether her recommendation was for Zinc sulfate or what - she just said zinc.  I am reading that Zinc chelate is better absorbed.  For any other crohnies out there with skin rashes or hair falling out, zinc deficiency seems to cause various skin conditions, and I'd recommend having your child's zinc checked.

Camp Oasis is coming up in 2 weeks.  She's looking forward to that.

Jaedyn did a 2 week drama camp and made it through (after deciding the next morning that she wasn't going to come back!).  All 3 of my girls went to it and they had a play on Friday evening.  It was a success!  Jaedyn decided to overcome her fears and did great.


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## Jmrogers4

hmmmm.  zinc?  I don't think we have ever had zinc checked.  We pulled Jack off the periactin to see if he maintained his appetite and it has definitely dropped off he is back to eating very little.  He has GI appt after they get back from camp so I'll put it on my list to ask about.
Glad Jadeyn is feeling good and getting out there doing things, good for her you must be proud.
We got our camp packet yesterday and Jack was looking at the map and talking about the different cabins, He thinks Jaedyn will be in Sleem based on her grade.  Jack is also very excited for camp.


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## DustyKat

Thanks for the update Carol!  

It is so good to hear that Jaedyn is getting on top of things again. :biggrin:

Well done to your girls for doing so at drama camp and an extra kudos to Jaedyn for overcoming her fears! :thumleft: 

I hope all goes well with Camp Oasis and she has an absolutely fab time! 

I had Matt's Zinc checked last November, at David's recommendation, and his was also low. Our GP prescribed Zinc Citrate 30mg daily and from what I have read that is also a well absorbed form of Zinc. He now has zinc regularly tested along with his other bloods and it is now at the upper end of the normal range. David did state this to me re dosage: 



> Cool, 30mg once a day should be fine. 50mg and above you start to worry about potential toxicity.


Dusty. xxx


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## momoftwinboys

H was tested for zinc in march 2012 and was low. Dr suggested 15 mg per day for him. The rash on the side if his nose cleared soon after supplementing. Dr tested zinc again this winter and he was normal. Dr said keep him at 15. 


Here is a link that I found at the time 
http://www.bcm.edu/cnrc/consumer/archives/zinc-Crohn's.htm
Link between low zinc and Crohn's disease symptoms studied

A pilot study designed to determine why children with Crohn's disease have low levels of zinc might lead to more effective treatments for this chronic inflammatory bowel disease.

"Many symptoms seen in Crohn's disease, such as stunted growth, a poor sense of taste and skin rashes, are also characteristic of a zinc deficiency.  Because most individuals with Crohn's disease have low serum zinc levels, many question whether a zinc deficiency might be the cause of at least some symptoms," said Dr. Steven Abrams of the USDA/ARS Children's Nutrition Research Center at Baylor College of Medicine in Houston and the study's principal investigator.

Crohn's disease is a chronic condition that can affect the entire gastrointestinal tract.  Flare-ups are characterized by intestinal inflammation, fever, abdominal pain, severe diarrhea, and bloody stools.  Even when the disease is under control, many individuals continue to experience poor appetite and chronic diarrhea, which can affect their nutritional status.

"No one knows whether the low serum zinc levels seen in Crohn's disease is due to diet, poor absorption, or increased losses caused by the disease.  But, because zinc is involved in over 70 physiological processes, including cell division and protein formation, it's clear that a zinc deficiency during growth periods can have serious and life-long repercussions," said Dr. Sandra Kim, a Baylor research fellow who is also working on the study.

Abrams and Kim believe that pinpointing where abnormalities in zinc metabolism occur could help determine whether supplementation relieves some Crohn's symptoms.  If so, this knowledge might also help researchers identify the best methods for administering supplemental zinc and for monitoring zinc levels.

According to Kim, approximately 10 to 15 percent of the nearly one million individuals with Crohn's disease are diagnosed in childhood.  Caucasians suffer most frequently from the disease, but the incidence among Hispanics and blacks living in Westernized cultures is on the rise. 

Although the cause is unknown, many believe that the disease is initially triggered by a gastrointestinal infection.  One theory suggests that the body somehow fails to properly "turn off" the normal inflammatory immune response once the infection is resolved, which sets up a vicious cycle of intestinal inflammations, diarrhea and other symptoms.

"Understanding how zinc metabolism is affected by Crohn's disease could lead to an improved quality of life for these children," Abrams said.


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## DustyKat

^^^^ Thanks for posting!


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## CarolinAlaska

Good information, everyone, thanks!

I forgot to mention that Jaedyn's sed rate was also up a little bit (normal CRP).  We are now waiting for results of a fecal calprotectin test to see if that is the cause.

Jacqui, I think that your son's use of periactin started this, as I knew he was doing well on it.  I asked our GI if that would be something Jaedyn can try.  She said we should check the zinc first, and now I see it was for good reason.  I think it would sure be with a try in checking it on your son.  I hope it makes a big difference.  I'm still not sure as to the dose in the form she has, but I hope it works.  I guess we can always give her more if it doesn't.  Today she had her first dose of zinc and didn't seem to have any problems with it. 

Have a good night.


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## CarolinAlaska

I guess it is time for another update.  Jaedyn just got back from Camp Oasis and had a fabulous time.  She wants to go back next year.  Before she left, she began slacking off on her formulas, and is only getting about 1200 calories (4 cans) in a day with that.  

We haven't weighed her for a couple weeks, but before she started slacking off she was fitting her swimming suit without the safety pin!  

I don't know how well she drank at camp, and they effectively cut the parents off from contact with the kids during the week, which I'm not sure I like too well.  They didn't tell me how well she did or anything either, since I couldn't drop her off or pick her up from the camp.  She went with a chaperone from the Anchorage airport.  Her appetite isn't impressing me too much yet with the zinc, but Jaedyn seems to think it is helping a little.  

She is playing soccer and seems to tire quicker than the other kids, but that doesn't surprise me much because she doesn't exercise much.  I think I'm going to get her back into swimming lessons again soon to help her increase her activity now that Camp Oasis is over.  Soccer is only twice a week...  

She had an appt with her GI two weeks ago and she was very impressed with Jaedyn's growth and weight gain.  She won't be seeing her again for 4 months, but sees the pediatrician July 11.


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## Dexky

Hey Carol, doesn't Camp Oasis have to follow the med protocol as set by the parents?


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## Jmrogers4

Glad she had a great time, Jack was full of stories yesterday. Yes Dex they are supposed to follow parent protocol and the nurses are there to make sure it gets done on time. Jack usually does better at camp eating because they are on such a schedule and everybody else is eating as well.
Hope her Ped appt goes well and she hasn't lost any weight.  Jack goes for GI check in on the 9th.


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## CarolinAlaska

Dexky said:


> Hey Carol, doesn't Camp Oasis have to follow the med protocol as set by the parents?


Giving the meds is the easy part.  Getting a Crohn's child to drink 48 oz of a formula mixture with no appetite and a busy schedule is a different issue.  We have a hard time making it happen at home.  She was the only one having to drink the formula and no one else in her cabin even did nightly feedings with NG tube or any kind of enteral nutrition.  Frankly, looking at the pics, she seemed to be the only child who was underweight in her cabin!  I was really hoping that she would see that she wasn't alone out there in doing the enteral nutrition thing, but she says no one else at camp was doing it, that she could see...  Of course I'm sure there were others, but it wasn't obvious enough that she could see it, and none of the other girls were encouraging or said things like, "oh I had to do that once..."  sigh.


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## DustyKat

Thanks for the update Carol.  

It is so good to hear that Jaedyn had a fab time at camp! :dusty: But I do hear your concerns too. :ghug: 

Good luck with the appointment and I hope your lass is continuing to hold her own. :goodluck: 

Dusty. xxx


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## CarolinAlaska

Jaedyn and I had a talk about her formula.  She needed some motivation to do it.  Right now if she drinks her 6 cans a day, she gets a dollar.  If she doesn't, she gives up her right to electronics the next day (TV, computer, Wii).  It is really a double motivator, and doesn't cost me much.  It was her plan and so far she failed the first day, but met it yesterday...  This could cost me $365/year, but that would be so worth it for $365 days less of nagging!


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## Clash

The lack of nutritional feeds may be due to the fact that the US tends to utilize Pred more?

It is always had to get C to get in supplemental drinks into him and we a whole system of bribes/takeaways. Just wanted to send some hugs your way!!


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## crohnsinct

Remind me Carolin...is she just supplementing at this point?  Does she have a problem with milk?  Just wondering as for just simple nutrition and weight gain there are a bunch of other options out there...but...if it is for trying to knock down inflammation maybe not so much. 

If just for nutrients and weight gain, do you know a good registered dietician?  If not maybe find someone with experience with patients who have anorexia nervosa.  They are well adept at helping kids pack in a lot of good nutrition and some pretty yummy sneaky ways.  We were seeing one of those for O and O was her easy patient as she liked to eat!


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## Jmrogers4

Same here we are still having problems with adherence but I can see how much better he is, how much more energy he has when he does have a couple a day at this point


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## my little penguin

No issues here yet - but he is still only nine  . I am sure its a matter of time.
I can say the vsl#3 taste far worse than the peptamen according to DS which I didn't think was possible .
Is she eating as well ?
Once DS was back on foods we were able to cutback to two to three a day so less of an issue .


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## CarolinAlaska

The good news:  Jaedyn reached her 20 lb weight gain a few weeks ago!  She weighed 90 lbs even!

The bad news:  Jaedyn got strep throat again and was on 10 days of antibiotics then caught a bad cold that turned into a sinus infection for which she was put on a second antibiotic after 6 days of fever...  Now she's lost 6 of the above 20 lbs and won't drink her formulas any more.  She's finally starting to eat again (had 4 meatballs and some cooked cabbage at supper!).  Yesterday we started school but she had to stop to lay down due to belly pain, and she's had orange stools with diarrhea since starting the second antibiotic - hoping this is a side effect of the antibiotic!  I guess my rose colored glasses have been broken, and we haven't beaten this thing yet!


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## Jane and Nick

I hope this is just a bump in the road and Jaedyn will feel well again soon. It's like riding a roller coaster having a IBD member in the family. You are doing and have done such a wonderful job, keep your chin up and this to will pass.
Sending hugs to both of you.
Ps. Great news about the weight gain, fingers crossed it will come back plus more !


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## upsetmom

:ghug:..I hope she gets better soon.


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## Tesscorm

Sorry she's not feeling better!   But, great news on the weight gain!   Hopefully, once she's feeling better, she'll get that weight back!


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## Jmrogers4

Sorry she is not feeling well, hopefully it is just a small bump in the road and she can quickly get back those pounds she lost.  Awesome on the weight gain though!


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## Mehita

How much longer will she be on the antibiotics? And she's on 6MP, right?

Like the others said, maybe it's just a bump in the road.


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## CarolinAlaska

Thanks everyone.  She has lost 6 lbs so far, but seems to be on the mend.  Her appetite is starting to improve and she drank 3 ensure plus formulas made into "Orange Julius" type drinks yesterday in addition to food.  She was doing 6 drinks previously, but at least she is drinking it again .  She felt good enough to start soccer yesterday too!


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## kimmidwife

Glad to hear she is doing a little better. Is she on a probiotic? I don't remember. If she's not make sure to get her on one. It will definitely help with some of those antibiotic side effects.


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## DustyKat

So good to hear about the weight gain! :dusty::dusty::dusty: 

I am sorry about the setbacks though......and sending loads of luck and well wishes that the turnaround continues for your lass, bless her. :heart: 

Onwards and Upwards!

Dusty. xxx


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