Crohns with no symptoms?

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BoyMama2000

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Sep 3, 2011
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Hi Everyone,

My 13 year old son has not gained weight in 2 years and fell off of his growth curve. He was worked up by an endocrinologist with many of the more common growth conditions ruled out. The final condition to rule out before we would just determine that he is a "late bloomer" was celiac disease.

He had an endoscopy on Thursday and the doctor called me today to say that the pathologist thinks he has Chron's disease. His stomach is swollen and had a granuloma as well as ulcers. His duodenum was also swollen. They do not feel it is celiac disease.

The strange thing is that he has normal bowels, no stomach pain, no acid indigestion, normal SED rate and iron levels on blood work. This was just an incidental finding on the endoscopy looking for Celiac.

They will call us on Tuesday to schedule a colonoscopy and do a blood panel for inflammatory bowel disease. They will also likely do a barium swallow and the endoscopy where he swallows a small camera to view the area of the colon that cannot be viewed by a normal scope.

So my questions is, have any of you been diagnosed with no symptoms of this disease. Could diminished growth and weight gain be the only sign? Do we put him on meds for this without any symptoms. I know it is important to put it in remission.

Any insight would be greatly appreciated.

Regards,
Concerned mom in Colorado
 
My Crohn's is like this. I am totally asymptomatic while flaring. Which is awful, because I was eventually diagnosed because I developed a very tight stricture (caused by years of inflammation) that caused a bowel obstruction.

After that obstruction, I had a colonoscopy. I felt great going into it, as usual. I was sure they'd find nothing. But there was so much inflammation the doctor could not get the scope around the first bend of intestine. I was completely closed up owing to inflammation. I had tons of ulcerations and internal hemorrhoids as well. Crohn's!

If I had had symptoms and been treated, I might not have developed the stricture, which has pretty much ruined my life. Even after surgery (which happened right after my diagnosis), I still can eat almost nothing, and suffer repeated bowel obstructions. I wish I had been diagnosed before my intestines were destroyed. Trust me . . . even if he has no symptoms, if he has Crohn's your son absolutely should be treated.
 
Hi and :welcome:

As Stella has said, yes it is possible to have the failure to thrive as the only symptom. The tests he has already had done are showing physical changes to the bowel so I think it would only be a matter of time before those changes presented themselves to you in a more obvious manner...perhaps pain, nausea, vomiting...that sort of thing.

Chronic inflammation, such as that with IBD, will postpone the onset of puberty and it is possible for the inflammation to be present for quite a period of time before symptoms do present. Even without outward symptoms damage will be happening on the inside, so yes, I would start treatment based on the upcoming test results.
My son, diagnosed last December, had next to no symptoms of Crohns and if his sister hadn't been diagnosed with it I wouldn't have even taken him to the doctor and asked for bloods to be done. At the time he had no pain, normal bowel motions, was growing, wasn't losing weight, just had a couple of random vomits and off his food for a week, that was it. Two weeks later he had his diagnosis but it had obviously been present for many, many months, perhaps even a year. It was his raised CRP (inflammatory marker) that set the alarms bell off.

I hope all goes well for your boy with the tests Mum and you get some solid answers. Granulomas are often a positive sign of Crohns disease and biopsies will be able to determine if coeliac is present.

Good luck and welcome aboard!

Thinking of you, :hug:
Dusty. xxx
 
PS. Does he have suffer with any other problems e.g. headaches, rashes, eye problems, joint aches?

Dusty. xxx
 
Good luck with all the tests coming up - it is certainly better knowing earlier rather than later. My son's only symptom was a sore tummy once every couple of months and a bit of tiredness (which I put down to hormones). My son is growing fine and has never lost weight but I am glad it is now being treated so that the other symptoms won't happen now.
 
Thanks and more info...

DS has normal Sed rate and CRP. He had hives once when he was 5 and went through some time where he had canker sores in his mouth but has not had any in 2 years. He also got migraines but not in several years. So no real significant things in the recent past.

If he has this, growth delay would be the only sign. His doctor is ordering the IBD blood panel when we do the colonoscopy so maybe something will show up then.

How did you all present this to your kids? How do they tolerate the meds?

Thanks for your input and support.
 
Hi BoyMama2000, your story sounds exactly like my son too. MY son was diagnosed last year with crohns after tests including barium, colonoscopy, endoscopy and camera capsule. He showed no signs either, his poos were normal and regular and had the odd sore tum. He did have an abcess by his anus which he had surgery for and at that time i didnt realise that is a link to crohns too ( few years back i had same problem and i dont have crohns) also, his tummy would swell up so thats when i took him straight to doctors who referred him to a chidrens hospital ( i should mention my husband has crohns so thats why it all moved so quickly, thank goodness). Looking back now when i think of the swollen tum and alot of gas it all makes sense. He is currently on meds for his crohns and is so full of energy and no more swollen tummys etc. I hope your son gets on ok too. take care. xx
 
Growth

If DS does end up with Chrons, have any of you had kids with growth delay? How did the treatment help with growth. Although he has no stomach pain or symptoms really anywhere, his growth started to slow 2 years ago. He has not gained any weight in 2 years but has not lost either. He has only grown about an inch a year. He had a growth hormone stimulation test because his IGF-1 was on the low side.

I was just curious if the treatment will help growth if they do determine this is Chrons. Does anyone have kids with involvement in their stomach like him?

As you can see, I am full of questions....sorry!


Thanks again for your input!
 
yea my son is small for his age and like your son he hasnt lost any weight, maybe gained couple of ounces but thats it. He also had a dexa scan which looked at his bones, all lookes ok, thank goodness. My son has a bit of crohns in his stomach too but as i said before he seems to be doing fine at the moment. I dont know if the meds help with growth but all i know is that kids with crohns just develop more slowly than others. x
 
Thanks for your information. May I ask how your husband is doing and how old he was when he was diagnosed?

Where was the Chrons disease found in your son other than the small amount in his stomach?

Thanks.
 
My husband was about 29 when he was diagnosed, he is now 35 and doing great, he is only on pentasa and calcium tablets. he cant eat egg white as that triggers a flare for him. My son has an area in his stomach, ileum and his anus. He can eat almost anything as i cant pinpoint any foods that trigger flares as he doesnt show symtoms, is very hard to understand because he looks n feels well. x
 
Hi BoyMama, welcome! My son stopped growing as well but after nearing two years of treatments, he has caught up quite a bit. He does have a way to go to match most kids his age but he is nearly the oldest in his class so that helps even things out some.
 
My son was a small kindergartner and after an antibiotic he had a couple month bout with diarrhea, but then it cleared up. He wasn't having any bowel issues so we thought he was fine. He seemed to slow down in growth, but it didn't really become noticeable until beginning of 4th grade (all the other boys were having growth spurts.) Before we just thought he was small because I'm small. End of 4th grade he started having cramps and diarrhea that persisted again. We took him in and they did tests, low and behold, he was having damage in his large intestine...he had crohn's and we didn't even know it. Probably, looking back, his size was his only symptom that we could 'see' the first few years. But a lot of people in my family tree are small and skinny, but no one has crohn's. That's the scary thing about crohn's...you can think everything is ok, but it isn't. A colonoscopy and blood work is the really only way to tell if everything is ok.

ps. I also noticed (and thought it was wierd, but ignored) his shoe size didn't change. I'd buy him new shoes, and they'd be the same size as year before. His clothes sizes changed slightly.
 
So glad to know that if it is Chrons, he can have catch up growth. We won't get the colonoscopy until Sept 22nd. Wish it was sooner. I am hoping to get his blood work done tomorrow morning so it will be done at the time of the colonoscopy.

Do any of your kids have Chrons in their stomach? I know it is an unusual location. That is one of the reasons they are questioning it.

How did your kids do on the medications?

Thanks for your input. My son's shoe size hasn't changed much either. He is older but it is still strange. I am not sure but he may have had a little growth spurt recently. His height at the Endocrine doctor in early July was 3/4 inch shorter than at the GI doc in mid-August. They both use the bubble measures that seem pretty accurate and were taken the same time of day so perhaps he is growing.

So many questions, so few answers right now.

Again, thanks for your feedback.
 
Sarah didn't even look like going through puberty prior to her diagnosis at 14 1/2. She was thin as stick and the shortest in her year. She did require emergency surgery and as a result went straight into remission, the first 6 months post op there wasn't a lot of change but I didn't expect there would be. The next 12 months however was like fitting 3 or 4 years into 1, the change was jaw dropping!

My children don't have Crohns in their stomach but I know there have been others here with children that do.

Both of my children have had surgery and post operatively have responded well to maintenance medication. My son is early days yet but my daughter has now been in remission for 5 years.

Keep asking Mum and we will do our best to help you out! :)

Dusty. xxx
 
Thanks so much for all of your help. I wanted to give you the results of our visit to the specialist today. I am curious what you all think.

This doctor does not feel the need to aggressively look for Crohn’s disease at this time. He felt that with no signs or symptoms of the disease, he had other things he wants to look at before doing a bunch of invasive tests. He said that granulomas can occur with other things and that even if they saw some inflammation on colonoscopy right now, they still may not do anything about it at this time. He talked about the struggle they have these days when we learn so much more about what is going on in the body and have to decide if it really is something that needs to be treated when there are no clinical signs of a problem.

So, the initial plan is this:
1- He did another blood test for Celiac disease (IgG assays, deamidated gliadin peptide and tta). He still feels this is a possibility. If the blood work is positive, he will go on a gluten free diet. Once he is on the diet if his growth pattern changes, it would confirm Celiac disease. This still would not 100% rule out Crohns however but would help his growth.
2- He ordered another test for chronic granulomatous disease. This is an illness that can be horrible but don’t be alarmed if you google it. There are some mild forms of this and my DS never gets sick so it will likely be something just good for us to know about. Time will tell on that one. Hopefully this is not an issue if it could become as serious as the internet states!
3- He is having his bone age x-ray looked at again since one doctor said it was age 13 and the other said it was 10.5. He asked for a specific radiologist to review it.
4- He will also have Sean follow up with an endocrinologist at Childrens.

If the bone age is 10.5 and the above tests are negative, he will want to give things some time before doing more testing.
If the bone age is closer to his true age, he will want to be more aggressive and will do some more stool studies, capsule endoscopy and possibly colonoscopy like the first doctor was planning to do. This is because we will need to be more aggressive to take advantage of the time his bones have to grow.

My take was that he was less concerned about diagnosing Crohn’s disease right now than the first GI doctor and would only do so if he develops symptoms or if his bone age is around 13. He did not feel that the granuloma eliminated the possibility of Celiac disease like his first GI doc. He also still thinks that simple delay of growth and puberty is a possibility.

We should get the results of the blood work and bone x-ray in about a week.

My son seemed fine with everything. His main focus was would we get out of there quick enough so he could eat lunch in a restaurant before he had to get back to school!

What do you all think? I did ask him about fistula's developing without symptoms and he said that that some type of symptoms will happen before fistula's develop.

I guess I am glad in a way that he is less convinced of Crohn's but I also would feel better knowing and not playing a waiting game. I guess we do need to really know about Celiac Disease because that is a fairly common reason for growth and puberty delay and the sooner he goes gluten free, then sooner we can see if he will grow!

Thanks again
 
Oh man, this is a tricky question only for the fact that many here have waited, myself included, and wished we hadn't, but then again we were perhaps looking at symptoms your son isn't experiencing.

After being through what I have I am biased and would most likely always say push ahead and go on the offensive.

I would imagine the pathologist thought it was Crohn's over Coeliac not only due to the granuloma but because of the structures affected. I always thought Coeliac was a disease of the small bowel, not stomach. A colonoscopy is invasive, the same as the endoscopy, but I wouldn't regard it as aggressive and by having one done small bowel biopsies can be collected that can rule both Crohns and Coeliac in or out. I think I would prefer to go this way rather than than wait.

Dusty. xxx
 
I agree with Dusty! Keep pushing for a definite dx. As Dusty can certainly attest, things can go very wrong even while remaining symptomless!
 
Thanks, I hope to hear in the next day or so about the blood work and bone age x-ray.

I do plan to ask more questions if the blood work does not show Celiac and the bone age is young. That is when they wanted to do the "wait and see" approach.

I will push for the stool testing and possible colonoscopy. I would feel better really knowing what may (or may not) be going on inside of him.

I did read about a case or two where a gluten free diet did cause granuloma and ulcers in the stomach so if he tests positive for Celiac, I will do the gluten free diet with him and then ask for another endoscopy in a few months to see if that made a difference. I guess if he grows a lot or if the blood work normalized, we may be able to avoid endoscopy but since Crohns and Celiac can be found together, I think I would still push for a 2nd endoscopy.

Do you know if anyone gets treatment paid for by their insurance for Crohns in they don't have symptoms. That could be another battle but I guess I am getting a little too far ahead of myself.

The waiting game is no fun! I try to slow my brain down, but it is hard sometimes!

Thanks for all of your help and support!
 
My son has no symptoms other than slowed growth. In the past six years he has had varying degrees of what we only now know and recognize as symptoms "for him" of crohn's disease.

He was just recently diagnosed (July/Aug) through colonoscopy/endoscopy....but ALL of his blood work was within normal ranges.....his sed rate was only a 17. The IBD panel came back positive on one marker....and it too was very mild. He has normal stools and complains of nothing bothering him whatsoever. Over the long journey to put his medical puzzle together he has had minor extraintestinal symptoms.....but his blood work has always been normal just as your son. We are currently in the process of deciding a treatment plan.

His Gastro would like him on Apriso (5-ASA), but we are struggling with the same thing you are.....it is very hard to medicate your child when they appear to be in great health, just on the small side. We have consulted with other physicians, nutritionists and researched like crazy and still we are struggling with the decision before us.....But you have come to the right place in visiting this board.....I love to read the advice from people going through this process, either as a patient or a support person. What I have learned is that none of us are alone.....and that one treatment doesn't fit all people....this is a very personal disease....it is different for everyone going through it.....but it is nice to know that others are there for you and that you don't have to suffer in silence. I am sorry if I was not helpful to you....I just read your post and totally identified with what you are living......

Hugs :)
 
Our stories do sound very similar. If you don't mind my asking, what did they find on colonoscopy/endoscopy that lead them to this diagnosis. Did they ever test your son for Celiac, growth hormone etc?

It would be interesting to see if he does start on medication, if that effects his growth. That would let you know he needs the treatment. If he remained symptom free through puberty, you could always try taking him and and see how he does.

How old is your son?

Thanks for posting. It is very helpful to hear real stories that are similar. I appreciate all of your time.
 
BoyMama2000,

My son is 10 years old.
The first time he was scoped, although the Gastro thought his intestines looked inflamed and abnormal the pathology was not positive.....that was when he was about 4/5 yrs old....In July his new Doctor was able to access the terminal ileum and that was not previously done....it is apparently very difficult to get to....but it is one of the more common places for Crohn's disease to be found.....his Dr. saw ulcerations and inflammation present there and only there....so it could have been present 6 yrs ago but that Gastro did not check that location. His pathology came back positive from this location in his intestines. If you are to follow through with the scopes on your son, I would encourage you to make sure your child's doctor checks his terminal ileum during the scope. My son, has been tested for everything under the sun including celiac disease (my mother has Celiac so we have had him tested several times and has been negative) He has also had the bone scans done to determine his bone age (which was that of an 8 1/2 yr old)....and is under the care of an endocronologist as well.....literally, he has been through the ringer to get this diagnosis...all while appearing to be the picture of health....other than being the smallest kiddo in 5th grade!

His father and I, have also wondered if the Apriso would help cut down the inflammation in order for him to grow....we have been told that the terminal ileum is where all the nutrients are absorbed....so if we could get the inflammation under control he may begin to grow....possibly catch up to his peers. It is just the side effects and unknowns of the meds in children that scare us.....he seems so healthy and I refuse to medicate out of fear.....but, at the same time the fear of not knowing what is actually going on inside of him is so frightening.....this is without a doubt the hardest thing about all of this.....his doctor wants him on the 5 ASA for a min of 5 years.....but he can't explain why the 5 years...and told us that there really is no way to know if it is making a difference unless we scope him again....and none of us want to keep doing that to him....but his blood work is fine now....so being on medicine won't really tell us anything more in that respect either......such a confusing process.
 
I would advise you to keep pushing for a colonoscopy. You need to rule crohn's out if nothing else so you know there is no ongoing damage going on while it is not being treated. My son is small for his age, did not grow for ages and had the same shoe size for almost two years. He did have lots of symptoms of crohn's but i was told it was all in his head and really had to push after basically diagnosing him myself. You are his best advocate and you need to be active on his behalf. Good luck I hope you get some answers soon.
 
I know this would be very hard to do but have you guys considered an entereal diet? There is a lot of info about this on here. It seems to work as well as predinisone in many cases to reduce inflammation. It also may be even better for growth since he will get added nutrition.

If that changed his growth, you would know the inflammation in his iliem was effecting his growth without the side effects of the meds. I know it would be hard to explain to a 10 year old (I have one who just turned 11) that he has to stop eating regular food for a while, but it could be worth a try. Your doctor could prescribe the drinks. I know it is done a lot in England and there are a lot of people on here who could help.

My son does have an excellent doctor who did say he would need to see the terminal ilieum. My son's bone age x-rays were read totally differently by 2 different doctors so we are waiting for a 3rd opinion today or tomorrow.

The radiologist said it was 13 (he is 13) and the endocrinologist said it was 10.5 years old! Quite a difference!
 
Don't you just love hearing drastically different info from 2 professionals....geez...it is hard enough just to muddle through all of the research out there without having to question your doctor too!

We have considered the EN....his doctor mentioned that, but cautioned us that it would drastically change his quality of life...and felt that this would be an extreme way of treating our son.....this doc is our 2nd opinion doc and he is top in his field at the Children's hospital we are with.....but, we do feel like he is pro-pill at this point. We don't disagree about the medication.....just weighing all our options. We currently have our son on prevacid, and he takes several supplements and vitamins.....we meet with his Gastro next week to finalize a plan.....however, we are consulting with a nutritionist that specializing in "healing the gut," and will most likely continue to see her on the side for alternative treatments. She has him taking a supplement called Inflammacore it is supposed to reduce inflammation in the gut....I mix in it a smoothie for him every day....he gets some extra calories this way as well....we'll see....just started this routine last week.

I am glad to hear that your son's doctor already mentioned the Terminal ileum to you....if we had known that 6 years ago.....we may have avoided the goose chase! It sounds like you have a good doc, and you are on your way to an answer. When will you decide about your son's scope...or are you waiting on the 3rd opinion on bone age?
 
I forgot to mention that if his bone age is older (13 or so), he will do more aggressive testing right now without me needed to ask because we will want to take advantage of the time he has left to grow.
 
I am not sure if this will help but my husband was diagnosed with ulcerative colitis at age 22. He was hospitalized for 2 weeks and it was so severe they considered a colectomy at that young age!

He was discharged with sulfasalazine which he took for a year (when I first started dating him), he then took it PRN for about 6 months. He had absolutely no side effects with this med at all.

After that, his symptoms never returned (bloody D), he never took it again and repeat colonoscopies at age 32 and 40 were completely normal with no signs of UC. His life insurance actually went down at age 40 when we submitted his colonoscopy records to our insurance company.

His GI doc at age 40 told us it probably wasn't UC but some infectious agent but now we wonder!

I also have a friend with Crohns who was diagnosed with it at age 17. He has been on sulfasalazine for 25 years, has had 4 healthy kids (so far) and no side effects. The newer forms of 5-ASA seem even better. His doc is afraid to change him since he has done so well for so many years. He only had 1 flare in college when he stopped taking his meds for a while.

So, there are people who can tolerate these meds very well!
 
Oh wow! I'm going through something similar right now...My daughter has had some joint pain, low grade temps and conjuctivitis that caused a scleral bleed in both eyes. Took her to a Rheumatologist...who called last week and said he spoke with a GI doc who wants to see her....the thing that has tipped them off the most to a possible problem is she basically hasn't grown for two years...went from 50th percentile to 3rd in height and weight. No GI symptoms...just an occasional tummy ache!

She has her appt on Nov 3rd with the Ped GI.
 
Test Results back - spoke with GI

Hi Everyone,

I heard from the GI doctor earlier today and this is what he said and the plan:

Bone Age x-ray-
The latest doctor to read his bone age x-ray felt it was near his real age. The first radiologist thought it was his real age but endocrinologist thought it was 10.5 and not 13! So now we have two that agree on 13.

IgA -
He is truly deficient in IgA.

Celiac panel that can be done with IgA deficiency -
(tissue transglutaminase antibody IgG and deamidated gliadin peptide)
They did test positive for Celiac Disease

Now for the plan....
His office will call in the next day or so to schedule a repeat endoscopy, a colonoscopy and a capsule endoscopy all to be done on the same day. He gave me the option to do the capsule on another day but I think it would be best to get it all done at once even though he won't be able to eat for a few hours after the colonoscopy.

Here is what he said.... on his prior endoscopy the villus atrophy that was seen was only a small portion of the duodenal bulb...first few inches. That can be Celiac but even with the blood work and the small amount of villus atrophy, he is not totally convinced it is Celiac and the only way to totally prove that would be a positive result from a gluten free diet. He is also not convinced that this would truly be enough damage to cause malabsorption and therefore growth issues. The rest of the duodemnum looked fine.

Granulomas can be seen a lot of other times and since he has no other signs of Crohns, he wouldn't jump to that very quickly either.

However, since the latest bone age x-ray does show his bone age is 13, we need to be more aggressive at ruling this out. If it was 10.5, he would tell me to have him go on a gluten free diet and see what happens with his growth.

I hope we can get this done quickly. I feel like we are racing against time since now it appears his bone age is older. We need to figure out why he has stopped growing! I read this forum and know this can take a while. We have been searching for a potential reason for his growth issues for 5 months now. We are extremely lucky that he feels well but I hear the clock ticking so that if he does have Crohns or Celiac, we can start treatment that will allow him to grow!

We have a good friend who is an orthopedic surgeon. He doesn't typically read bone age x-rays but he did for his own kids since they have endocrine issues. I am giving him a CD of his x-ray to see what he thinks.

So, do any of you have advice for me? Have those of you with kids with growth issues had similar experiences with bone age readings? I am glad that we are going to get all of this testing done and that we are with a doctor who truly is an expert in Celiac and Crohns. It is great that he will see my son's GI tract for himself!

Thanks for reading this long post!
 
A bone age test was never mentioned for us but EJ was quickly dxed and soon began growing after treatment started. I hope you get answers soon so he can have similar results!
 
No experience with bone scans here but I would like to wish your boy all the luck in the world with his upcoming tests...

:goodluck:........Please keep us posted!

Dusty. xxx
 
Update

Hi, I have some updates in my son's journey.

His pediatrician got him in with a different endocrine doctor since the first one read his bone age x-ray WRONG! This took us down a totally different path regarding his growth.

He had an MRI last week to rule out a brain tumor, pituitary tumor or another type of pituitary issue. They also met as a team at the teaching hospital about his cae. So far the pituitary hormone blood levels are normal for his Tanner stage but not normal for his bone age. No one seems to be able to really explain what this means to me.

Monday he will have his colonsocopy, repeat endoscopy and a video capsule endoscopy.

Then the GI team and Endocrine team will meet to discuss his case and options.

His blood work did who he could have Celiac disease but since his bone age is his chronologic age his GI doc wants to aggresively rule in or out Crohns and Celiac. Initially he would have put him on a gluten free diet after his blood work if his bone age was young like initially suspected by his first endocrine doc. Since 5 docs disagree with her on his bone age, we need to go with the 13 year old diagnosis of bone age.

We start the prep on Sunday. I have no idea how he will do! We had to put off putting his braces on because it would have caused artifacts in his pituitary MRI so he got them on today. His mouth is sore but at least he won't be eating much on Sunday.

I am not sure what I hope for after Monday. I truly only want an answer for why he stopped growing and why he is not going through puberty. I am glad it was not a tumor and pray it is something simple.

I will let you all know what we learn. You have been so supportive and have educated me so much about Crohns if that is his final diagnosis. I feel like I will be a much better mom to him because I have learned from all that I have read on this site.

Enjoy your weekends.
 
I hope for a simple, yet verifiable cause too Mom! Definitely a good solid answer! Good luck!
 
I am still being tested for GI problems at the moment, I am symptomatic but I am about his age (just turned 15) and I've been prodded and poked and tested for years for countless different things. I just want to wish him well for all these tests he's having, it is horrible having it all done. Theprep is nasty stuff but if the scopes find what's wrong it will be worth it if it saves whatever damage could have been done if untreated.
 
Thanks for the wish of a definitive and treatable answer Dexky and 14Girl96.

14Girl (or should we say 15girl!), I wish you the same. Did you have growth issues? I am sorry you have had to go through all of this too. I have a 15 year old boy who went months not knowing why he had become paralyzed. He slowly recovered without us knowing why and without any medical treatment. 7 months later he was diagnosed by a doctor at Johns Hopkins with Transverse Myelitis and is 100% now...almost 3 years later.

He too was poked and prodded. I really believe that all of you kids who have to endure the unknown and the prodding will grow up stronger and better able to appreciate the good things in life.

Thanks for your reply and hang in there. Keep pushing for answers and trying new alternative things so you don't feel hopeless! I am a physical therapist and have worked in healthcare for 22 years....we don't know it all and often learn from our patients!

All the best to you both.
 
I so hope these latest round of tests bring you closer to answer. Good luck for Monday and for solid answers!...:goodluck:

Thinking of you, :hug:
Dusty. xxxxxxxx
 
I don't think my growth has been affected, my symptoms are more pain, diarrhoea, sickness, rashes etc. I hope you find an answer so the poking and prodding will at least slow down! It can get tedious and is inconvenient at the best of times (especially the prep ugh!) I'm sorry for your other son, that sounds horrible too.

Yeah I think that too. At least you know you've got 2 sons who will be well grounded and know where their priorities are from all of this.

Thank you, good luck to your son for tomorrow and Monday. x
 
Answers soon....

Hi Everyone,

We just got home a couple of hours ago. He tolerated the procedures well and is resting with the transistor for the video capsule around his waist.

His results were very interesting. In his last endoscopy on Sept 1st he had swelling in his stomach, proximal duodenum and amphous ulcers in his stomach. He went on prilosec for 30 days and has been without meds for over a month now. His stomach looked completely normal! That being said, we have to wait for the biopsy report.

The uppder GI appeared totally normal. His colonoscopy showed a completely normal looking colon. The only abnormalitiy was the terminal ileum..sound familiar! He said it was just the first 2-3sm but they were swollen and there were ulcers there. He took a lot of biopsies there and everywhere else.

So, we should get the results later this week. He said he can't give us anything firm until then but it does most likely look like mild Crohns in the terminal ileum.

He said if it is only there that we may try a drug called budesonide (sp?). I guess it is used for asmtha and in pill form it only works in the terminal ileum. If the biopsy results show more than this, they will look at other options.

So here are my questions....

Would prilosec really totally put crohn's of the stomach in remission after 30 days or did he just have a high acid condition going on there?

Have any of you used budesonide? How about trying Asacol first to treat that area?

He does feel this could certainly be effecting his growth.

If it is confirmed as Crohns, we will be making an appt. in the inflammatory bowel clinic in a week or two and will see a doctor, nurse, social worker and nutrtitionist who will get us up and running.

We may finally have an answer after 5 months and hope and pray it is something we can treat that will allow him to grow normally. He said he wasn't surprised to see he had no symptoms since such a small amount of the bowel is likely effected.

Any of your wisdom would be greatly appreciated! Thanks for all of your support. It looks like my son and I may become offical members of the group.
 
Well an answer, even one you don't love, is an answer. I'm fond of saying, "We can deal with anything as long as we have a diagnosis and a plan" LOL.

Okay, budenoside is the generic name for Entocort. We tried it once, unsuccessfully, but I know many adults who it has worked really well for. Hopefully someone else on here will be able to relate a successful child story!

As for the stomach inflammation, it can definitely come and go. Claire' takes Nexium all the time now and at the time of diagnosis, she had inflammation and granulomas there too. That ol' insidious Crohn's can travel around sometimes I think!

Please keep us posted.....glad things went as well as they could have. Let's get to growing!

Hugs,

J.
 
Hi AZMOM,

Glad to hear from you. I had to tell you that when his GI doc was in the consult room with me discussing the scopes, he mentioned to me that another kid who played hockey (my son's all play) was admitted to their hospital with transverse myelitis yesterday. Crazy.

I was really not sure what I wanted to come out of today. If there were no findings, we would have no answers to a problem that is becoming more and more obvious. The endocrine doc really thought we would find a GI cause which was interesting. She even spoke with our GI doc to tell him that last week.

I guess I was hoping for a treatable reason that won't effect his life to much and knew whatever the outcome was today, we would still have to wait and see over time what it may lead to and if treatment helps him to grow.

If it is just a few centimeters of his terminal ileum, it will hopefully be responsive to treatment!

Thanks everyone!
 
My son is only affected in the TI....mildly so.....he was also prescribed Prilosec for 30 days due to gastritis in the stomach....he had no other symptoms other than slowed growth and his Gastro has him starting on 2 Apriso daily along with vitamin D and a multivitamin.....I am also hopeful that it will reduce the inflammation enough for him to start growing! I am not familiar with the budenoside but thankful that you were able to get a diagnosis.....now the research over treatment can begin.....which is a step in the right direction instead of worry and concern over "what" could be wrong. My prayer for your son, is the same for my own, that they respond to treatment and that they continue to have only minor manifestations of this hideous disease.....when I read others stories.....I feel lucky for my son that he hasn't suffered so much as some others on this forum.
Hugs

Farran7
10 year old son dx 7/11
apriso
prevacid
vitamin D
multivitamin
Inflammacore
Ultra Meal supplement
 
I agree that it is very lucky our boys don't have symptoms at this time.

It sounds like our stories are very similar. How did your doctor's decide to do a colonoscopy? Did he have elevated CRP or SED rate? I am asking because I wonder how they will monitor my son's disease without having a blood markers to use. I guess only growth which could take a while. I may ask them to look at his vitamin B12 and Viit D. Perhaps that can be a marker.

I guess only 3-4cm of his TI are effected. Do you know how much was effected on your son? It is amazing that this can really effect his growth and puberty.

We are hoping that he is only effected in the TI after we get the biopsy and video capsule results done.

Has your son grown much or gained weight? What tests did they do for him? I see he takes Inflammacore and an ultra meal supplement. I will have to look that up. I have not heard of either.

Great to hear from you and hope our boys grow, grow, grow!
 
Thanks for the update Mum.

It certainly does sound like Crohn's. Budesonide will only be short term and I would probably go that way to knock the inflammation on the head fast.

My daughter didn't have any blood markers either to indicate the progress of her disease but it was obvious to see the changes in her physically about 6-12 months post op. So yes, in your son's case it may well be that you look to his growth for indications that treatment is effective. Give the meds a little time to work though.

I would definitely have his B12 and Vit D levels tested.

Good luck and keep us posted!

Dusty. xxx
 
BoyMama2000,

I am not sure how much of my son's TI is effected....but it is very mild inflammation and ulceration at this point. The doctor decided to scope him for the 2nd time due to some EIM he had going on....and to actually access the TI, which wasn't done on the first scope. His Sed rate in July was only a 17....so we won't really be able to monitor his progress by his blood markers either......this was why we hesitated on a treatment plan vs watchful waiting.....but we ultimately decided that if we could start to see him grow we would know it was working.....we also took him to a nutritionist.....we get those results back this Friday....but she was the one who put him on the Inflammacore and Ultra Meal (rice)....I give him a smoothie every morning with a scoop from each....and he loves them! The Inflammacore is to reduce inflammation in the gut...and the UltraMeal is what I prefer to use instead of Ensure or Pediasure which have all the sugar/chemicals in them.....we get them through her, but I have seen both for sale online as well. We aren't expecting to see much in the way of his growth for several months....in the meantime....prayer and more prayer for his health and continued mild manifestations. I would also agree with Dusty to have his B12 and Vit D levels checked.Our Gastro has us on a 4-5 month visit schedule at this point....for bloodwork and stool checks.....unless we have any issues and need to be seen before. This is for sure a "Let go and Let God" situation for us.....because, like your son there truly isnt much to go by as far as tests.....I'll check back in after Friday and update after we get the bloodwork back from the nutritionist.

Farran7 :)
 
Thanks for your update. I guess we will be going on this journey together and waiting to see if there is growth with treatment.

The nurse from the IBD Team just called me and gave me the results:

Biopsy of terminal ileum and first few cm of ileum have inflammation consistent with Crohn's disease. He also still had some chronic gastritis in his stomach with no granulomas on biopsy. This could be from high acid or Crohn's. I am not sure how they determine this. I can't imagine a month on prilosec to lower stomach acid would reduce inflammation and ulcers from an autoimmune disease but who knows.

His video capsule and all biopsies in duodenum, esophagus and colon were normal.

So, I guess we got what we had hoped for. It is mild right now and it seems to be in the terminal ileum only.

We go to the IBD clinic on November 15th to meet with his doctor, nursing, nutrition and social work. We will leave with a treatment plan and more stool and blood studies will be done to get a baseline. I will make sure they do Vit D, Magnesium, Calcium and B12.

I guess this is my first post as a parent of a kid with Crohn's disease. I am thankful we caught it when we did and hope that he can be managed on mild meds.

I think they were thinking Budesonide to start and then I am not sure. I would rather start with Pentasa or Asacol but they did mention Imuran.

Thanks for your support and all of the knowledge you all shared.

If you have treatment opinions, please let me know. I want to be as armed with facts and information as possible to help us have the best plan for him!

Thank you again!
 
Wow....when I read your update it is like I am reading a page out of our son's story! I am sorry you have to go through all of this....but I am relieved for you to finally know what you are dealing with. It sounds as though you have a great team of physicians helping you guys. If you feel you would rather start treatment with Pentasa or Asacol, speak up, question things and be your child's best advocate! I have learned through our journey that, that is the single best advice anyone could have ever given me. There are many different approaches to treatment.....some start more aggressively and work from the top down (biologics etc).....others, like my family choose to start with the least invasive path (5ASA's or EN)....and we do consider ourselves extremely fortunate to have that choice because our son's disease is so mild at this point. I am sending you hugs because I know it is hard to wrap your head around the fact that you have a child with a chronic illness.....I have felt like I am in mourning ever since July....so I get it....and the confusion....the guilt about wanting to make the right choices on your sons behalf....all of it....and I just want you to know that first, and foremost that you are stronger than you think.....and so is your son....and that if you ever need an ear to listen or emotional support this board is a wonderful community for that! I would love to keep in touch with you and keep tabs on one another....your son and my son's stories are so similar that is is scary!

Hugs :)
Farran7
 
A close family friend was diagnosed with Crohn's with no bowel symptoms; he had hip joint pain that he thought was from playing sports. Turned out an x-ray showed ankylosing spondilitis-he was then diagnosed with Crohn's. He's now 28 and he has had very few symptoms outside joint pain, stiffness, and occasional bouts of diarrhea.
 
I know we are lucky he has no GI symptoms or any other type of symptoms with the exception of growth. I certainly hope it stays that way. Thanks again for all of your support. I am taking things one step at a time. Unfortunately, I learned to live with the unknown much better with my older son's transverse myelitis. It was a sudden onset but it took 7 months to diagnose and even longer to see how he would do long term. It helped his mom to grow up and learn better how to take things in stride. It is helping me with this issue.

I am nervous about our meeting with the team because I am not sure if it will help him or make him very nervous to learn more about Crohn's since he only knows it is effecting his growth right now!
 
What we have done as far as educating our son about his illness is to let him read the children's comic on the CCFA website.....and the Toilet Paper Flowers book by Frank Sileo....they both explain the typical presentation of Crohn;s disease....but it helped our son understand what the disease is, and then we explained more about how the disease affects him in particular. Neither book goes into detail about anything graphic or scary....mostly with symptoms and emotions and changes that may have to happen as far as treatment goes. There are a lot of resources out there that can help you explain things in a way he can better understand and accept.

I totally understand your "living in the unknown" feeling.....when we were waiting for our sons diagnosis.....over the course of 6 years it became a way of life.....now, knowing what he has, it almost seems easier to live in the darkness.....because facing some of these medical decisions is not easy....neither is the "not knowing" what can happen if you choose to medicate vs not medicate and treat alternatively......for some reason "not knowing" anything is more comforting at times than actually "knowing" and facing the next steps. Hugs :)

Farran7
 
I know what it's like

Hi
I'm very sorry about your son, I just wanted to let you know that Crohns can be controlled. I am seventeen and was lucky enough to be diagnosed when I was twelve years old. I had many of the same symptoms as your son, I was extremely small, I only just broke 100lbs as a senior in High school. I went through all the endoscopy and colonoscopies too. I had absolutely no symptoms and still dont except a few stomach aches ( I'm also lactose intolerant) and the no growth. I have been on pentasa for five years and have grown over a foot and gained over 40lbs. I do have some ulcers but I do nit show any symptoms, there is no pain. Make sure your son knows that he can live a normal life, I am lucky with my crohns and it sounds like he might be too. Crohns absolutely affects growth and as soon as it starts being treated, you will see a huge change. I hope I can help you with any questions you have, I'm not an expert but being around the same age as your son, I know what it's like.

-Alyssa
 
i have had no traditional symptoms. I have been anemic for years. I am also very short 4'9". i was dx nearly by accident. my mother now believes that more test should have been done when i was younger to see why i didn't grow (not that i would have ever been tall). but for a girl 4'9" is an acceptable height. my "growth spurt" was 2 inches.
 
Lucky0128 I just want to thank you for giving your experience with this disease....it is comforting to hear your success with treatment and having similar symptoms as my son as well! I am curious, if you can remember how long it took you to start feeling/seeing results once you began treatment?

BoyMama- Any updates to report.....how are you doing??

Farran7 :)
 
Farran7- it took about 2-3 months to really notice any change but the wait was worth it. I didn't even realize how much my stomach was affecting me until it started getting better
 
Lucky0128....thank you! I was thinking it would take at least 6 weeks....our son has only been on Apriso for about 3 weeks.....and I think I am annoying him..lol...because I keep asking him how he is feeling! ;)
 
Farran7 - We see the IBD clinic tomorrow and will meet with the doctor, nurse, nutritionist and social work and get his meds and nutrition plan. They will also draw some more blood and send us home with a kit for more stool samples.

I will update you tomorrow about what happens. Thanks for inquiring.
 
Lucky0128, Thanks so much for your reply. It does sound like you and my son are very similar. It is great you connect with those of us on this forum as I know it is probably more common to move on and not take the time to connect when you are feeling well. I do have a few questions for you.
Did they put you on steroids at first or have you been on pentasa since the diagnosis? Where is your Crohns?
Did you change they way you ate or take any supplements?

Thanks for your encouraging story.

Sean's mom
 
Hello Everyone,

We had a good first visit with the IBD team yesterday. Sean is starting on Pentasa, 1000mg 2 x day. He is also taking Omega 3 fatty acid, multivitamin and 1000 IU of Vit D. We are adding another boost smoothie to his diet. We started them about 6 weeks ago. This one will be at bed time. We may add more supplements once the blood work for micro-nutriets gets back.

They want us to follow up with his endocrine doctor and get the bone age x-ray done in December. We will see both endo and GI again in 3 months to see if things are working.

In the mean time, we will follow what they said and pray for weight gain and growth. The doctor said to expect weight gain before height gain. They also discussed his blood measures for IgG that were high. They will re-measure this. At this time he does not have Celiac disease but when this number is high they take a watch and wait approach because no one really knows what to make of it at this time unless they see damage to the villi in the duodenum. Our doc is doing a lot of research on this as we speak.

So, now the waiting game begins. It is hard to wait for growth since no other symptoms exist. I almost hope we find some nutritional deficiencies so we have something to measure to see if treatment is working.

If Pentasa does not seem to be working, we will more than likely do overnight enteral nutrition via N-G tube. They actually talked to us about this and yes we are in Colorado, USA! He would get about 90% if his calories this way and could eat during the day if he wants. Remission rates are as high as steroids with growth rates increasing more rapidly. There is a part of me that would like to do this right now but it is best to see if the most mild meds will work first. His case is mild right now, so hopefully they will.

Thanks for all of your guidance and support through this ordeal.

Sean's mom
 
I remember when EJ was first pxed Asacol! I thought it was the end of the world. Now I view his Asacol like it was a pill bottle of M and M's! I hope the Pentasa does the trick for Sean and it's all he ever needs. Good luck Mom:)
 
I am glad you have a plan and it sounds like a good one! May I ask what his blood measures with IGG were for......was he only tested for the Celiac? My son, also had a ton of tests through a nutritionist and his IGG report was off the chart for almost everything....basically said he should avoid almost all foods except pineapple, cane sugar, banana, cranberries and poultry! Is this the same kind of test Sean had? We are confused as to how he is supposed to grow and only eat these few items for 6 months!

We are taking a similar approach to our son's treatment as well....started him on the mild meds and the vitamins/smoothie for extra nutrition......but if he would ever get worse or we see no improvement.....we decided to try the EN at that point.

Here's to hoping Sean and Gavin grow, grow, grow!
Thanks for the update!

Farran 7 :)
 
We have the exact same plan! Hope this works and if not, Enteral nutrition.

They only reason we ever found out he has Crohn's is that he was IgA deficient on his blood work that his first endocrine doctor ran to rule out Celiac disease. When his growth hormone test was normal, she said the only way to rule out Celiac is to do an endoscopy. That is when they saw inflammation and we did the colonoscopy, repeat endoscopy, video capsule that showed inflammation in the terminal ileum.

So, his 2nd GI doc drew more blood for Celiac because the traditional test is not valid in people with an IgA deficiency. He is high in his gliadin IgG index. This could mean he is prone to getting Celiac but they did not relate this to any food allergies with the exception for gluten. They told us it was gluten specific.

I am not sure what to tell you about the food. Did an allergy doc do testing for him? I may go that route before taking him off of a bunch of nutritious foods. They did say we could try going gluten free but they recommend we try just this first and then they will re-measure. They said that because of the "leaky gut" phenomenon in Crohn's, this could be the reason for the high index. If it remains high and he doesn't grow, we may go gluten free at that point. There is something to be said for doing one thing at a time or we won't know what actually worked!

Let's just pray for what we are both currently doing!
 
Okay, so your test was specific to Celiac....Gavin tested negative for Celiac....but was IGG positive for gluten sensitivity. Just a side note, my mother who has Celiac disease Only tested positive upon tissue samples from her terminal illeum....all of her blood work was and is still normal. The IGG tests the nutritionist ran were to see what foods cause inflammation due to whole "leaky guy" stuff. It was shocking to see how many foods were triggers for inflammation. Our GI does not, however feel he should avoid any specific food groups.....unless they cause him GI symptoms.....so we are kinda in limbo...and I feel guilty giving him foods I now, know can cause inflammation.....but this included almost every veggie....and most fruits! We already knew he was IGE (true food allergy) allergic to Peanuts and tree nuts.....so we already have to avoid a lot of foods.

Poor kid!

Prayers are what will make the difference.....and I do pray for both of them that this mild treatment works like a charm and we both have Tall, strong boys in the new year!

Farran7
 
I wanted to update you all about Sean's progress!!!! We went back to see his endocrine doc and his GI. They were both thrilled with is progress. After 2 years with no weight gain and after growing only 1/2 inch in the past 18 months, he has gained 17 lbs and grew 3/4" after 3 months of treatment!!!! He also shared with both doctors that although he felt fine before that he feels better now. He said he can't really describe it but that he just has more energy!!!

His decline was so gradual that he didn't really notice it. His GI doc looked at me and said, "It is sort of like aging, you don't always notice the gradual stuff!"

As parents we both have notices a similar thing...he was fine and happy before but he reaches a higher level of happiness now and just seems more content now.

His endocrine doc told him that he must have a guardian angel looking over him since he was diagnosed with this with absolutely no symptoms but slowed growth and no clinical signs but an IgA deficiency.

We are truly grateful to our doctors starting with our pediatrician who noted the slowed growth to our great team at Denver Children's hospital! Of course, I am also so grateful to all of you who educated me about this illness and supported me through the scary time of waiting and wondering.

I wish I could fully explain how grateful I am but words don't do it justice. I know I have a deeper appreciation because my older son's initial care with transverse myelitis was far less than ideal. I know what it feels like to be kept in the dark more than is needed and the frustration in brings.

Thanks again for all of your support.

Nancy
 
Hi BoyMama,
I read this entire thread with a kind of fascination as I have only joined the forum a couple of days ago, and am amazed to find others with NO GUT symptoms!
My daughter's disease is also confined to her TI and she is absolutely symptom free as far as GI function.

Re: growth, it sounds like your boy has already had some catch up and you may not need to add enteral nutrition via NG but in case you ever do face that, here is Violet's synopsis of NG feeds:
Dx in 09/08 after severe weight loss 78 to 59lbs in two months. Ht 55in.
Started NG feeds, 3000cals/day
By Jan she was 99lbs and 57.5in
Now 3.5years later and still on NG feeds nightly (1200 cals) she is 128lbs 63in at age 14.
She was never restricted as to diet, she ate/eats whatever she wants to while on feeds.

She was asymptomatic from 3mo post dx until Oct of 2011 when she began having extreme weakness. Still ZERO GI sx.
I am such a fan of the formula feeds I like to share her success for any who may benefit from them.
Though she has now started a 3mo trial of Humira, (after maintining on just feeds until now) she shall continue with the formula feeds until she is sixteen and done growing.
The formula also has some effect on systemic cytokinergic response.

May I say this forum rocks.
 
We have had the NG feeds on the back burner if the current treatment doesn't work as well as we hope. I was thinking that at our next appt in May, I will ask about them if he is not catching up as much as we would like. I thought it would be easier to start as the school year ends. He has had a huge increase in appetiite and drinks supplements so I know he is getting adequate nutrition.

Great story about your daughter!
 
Now that is truly awesome! If he can maintain and have QOL and growth/development without additional stuff, heck yeah!
Just sharing that the NG thing isn't scary/awful and is very do-able. She inserts the tube at night and removes it in the morning. None of her friends know she uses it. It helped keep her med-free from dx until now, 3.5 years.

It's so interesting to me to find several on here who also had NO GI sx. I thought Violet was a rarity.

So glad your son is doing great :ybiggrin:
 
I wonder if it is more common in kids to have no GI symptoms. I see you live in Roanoke. My brotheer used to live in Lynchburg so I have been to Roanoke!
 
Wow....so encouraged to hear about your son's progress!! That is amazing! We too are hoping for similar results with our son....we go next week to both the Gastro and Endo....we notice the increase in appetite....and in height! I doubt he has gained much weight in the past 3 months....but I can totally tell he has gotten taller! Thank God for your son's progress.....here's to hoping we get similar results! So happy to read your post...so happy for your son!

Farran7
 
BoyMama,We aren't from here, we moved here from Palm Beach in 2001. It's like Mayberry to us.

Her doc says it is due to disease location not age of the pt. Pts w/TI disease often have no GI sx. He told us the average time for dx w/TI disease is THREE years! V. was dx in 2mo, but she DID have sx at dx. It was only after starting the formula feeds that her sx vanished very quickly. They literally vanished almost immediately and never returned. Since then, labs have shown that she has had active disease the entire time. The reasoning behind this is that the feeds are preventing systemic effect of cytokines. In other words, she has been living w/active inflammation but growing/developing normally and enjoying great global health while having a maelstrom in her TI.
 
Stephen is similar to Violet, he had GI symptoms prior to diagnosis (and was diagnosed in two months as well) but very little since. He has mentioned that once in a while his stool is softer but rarely diarrhea, sometimes he can 'feel' that his ab area feels 'different', no pain but just different somehow, but most of these issues resolve themselves with little to no intervention. I can usually tell when he's off more by paleness and a bit of tiredness (and, I guess, just mom instincts). Other than some lingering inflammation seen in u/s, MRI and bloodwork, he has been mainly symptom free since starting the feeding. His crohns is also mainly in the TI. Last MRI (Nov) showed some inflammation in TI, distal (sp?) ileum, last U/S (Oct.), I believe, also showed a bit in his colon. But, all areas were smaller/less than previous tests.
 
Tesscorm, he may very well get a long asymptomatic period just from the feeds like V did. The longer he can hold out without drugs, the better in my opinion. V's doc always deferred to us on that point, that as long as she had QOL w/out drugs, he understood our decision to hold off. Though he always made clear the risks we were taking thereby, i.e., stricture mostly. He had her on close f/u and scoped every year. She did/does need BIG doses of iron as she has been anemic the entire time.
It's crazy how quickly the feeds work to eliminate sx. V's doc is a big advocate of them. Many docs in the USA are not.
If Humira doesn't work to return her QOL I truly don't know what next to do. But she'll remain on feeds no matter what.
 
I'm not quite sure where Stephen's headed... over the holidays, he was feeling off and my gut said something was wrong. Took him to the walk-in clinic and requested bloodwork of iron, crp, sed rate, etc. As I suspected, his inflammation markers were higher, however, to complicate things he had a cold and was recovering from a shoulder and knee injury. We moved up his follow-up GI apptmt (to end Jan) and the results from those tests were improved from the Dec. tests but worse compared to his previous results (Aug.). His GI was tentatively suggesting methotrexate (but this was before his Jan. test results). As it stands, his GI is happy to sit still with his current results (CRP was 19, was 31 in Dec. and 12 in Aug.), next follow up is April.

His GI's comments re other options -
5-ASAs - doesn't believe they provide benefit to enough people.
LDN - doesn't believe there is sufficient confirmation or studies to justify its use.

I'm not really sure I agree with him but, as Stephen is feeling good now and as my daughter is also having issues and is seeing a rheumi in March, unfortunately, I can only deal with so much at once... :( For now, am happy with the EN, letting things continue as they are and hoping the continued inflammation will not cause problems later.


I hope you begin to see improvement in Violet very, very soon! :ghug:
 
Excellent, Tess. Your doc sounds like V's, not overaggressive with drugs and an advocate of enteral nutrition.
V's never does sed rate, and the highest her CRP has ever been is 2. BUT her lactoferrin ( sounds like I'm obsessed w/this test) is always ridiculously high, like 3000. Normal is 0-7. Fascinating how different the labs can be in pts w/the same disease. It's confounding.

Julie
 
Yes, I expect the differing symptoms, test results, etc. are why Crohn's can be so difficult to diagnose at times. From what I've learned here of others' experiences, I believe Stephen was very lucky to be diagnosed so quickly. We're also lucky to have a large, teaching children's hospital here with a large IBD clinic. We took him in to their emerg early morning, by 12, they were tentatively diagnosing him with Crohns and having him admitted. The diagnosis was confirmed a few days later after scopes.

I believe that EN is their first treatment option, where possible. While we were told about steroids, the conversation was brief and focussed on the side effects and EN was presented as the easier, safer and preferred route. Stephen's choice was EN over the steroids but, in hindsight, he was 'guided' to this decision and really just told you SHOULD do EN and you will learn to insert and remove the tube daily and it won't be hard. Stephen has had a fairly easy time with the tube and I partly credit the hospital's approach - everyone who spoke with him (GI, nurses, dietitien) came with the assumption was that he could do it and would do it easily. I think it alleviated some of his fears or uncertainties.

This has been discussed a few times here but, it still surprises me that there aren't more GIs prescribing this treatment to children. Perhaps it's not the right treatment for everyone but it seems that there are many GI's who just do not believe in its efficacy or benefits???
 
I know our clinic in the U.S. (also a large teaching hospital with an IBD clinic) offers the option to kids who require steroids. I think some of this is cultural in the U.s. I know that if they recommended steroids for our son, we would have gone the enteral nutrition route because his only symptom was growth and it is definitely better to encourage growth than steroids!! I was glad they mentioned it as an option during our first appt. if he needed steroids. They did mention that there are some insurance companies that won't pay for it so I guess that is an issue.
 
Our insurance does not cover it. Although we sent them letters from the dietitien and Head of the IBD clinic plus studies/reports, they initially said the formula was a nutritional supplement only; after receiving the documentation, they said our policy coverred only 'prescribed' meds and the formula is OTC! So far, we been lucky in that a local agency has covered the cost but I'm not sure how long that will last. I was told they only cover one repeat so I'm not sure why they are still covering it... but, i'm not asking! :)

Someone mentioned, or I read somewhere, that another issue with EN is that many patients find it a difficult treatment to maintain. To induce remission, I believe you usually have have to eliminate food for a period (not easy, especially at younger ages) and it seems that many GIs/clinics offer the option of keeping the tube in and don't strongly encourage the daily insertion/removal of the tube; I know it would have been much harder for my son to go to school, etc. with the tube. Again, another reason why patients, especially teens, would have a hard time accepting this treatment. Wearing the tube at school, at hockey, etc. would likely have been a deal-breaker for my son. He may have done the six weeks but not maintenance for the long term. Not sure if there's any validity to these issues, just my thoughts...

It's great that your son is doing so well, BoyMama! It's always such a relief when you get good news! :)
 
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It is amazing to me how many hockey players there are on this forum with Crohns! All 3 of my sons play hockey and my husband coaches. Of course, playing hockey in Canada is a given but not in Colorado!

Our clinic did tell us that our son would only use the NG tube at night and re-insert each day. They also said he could eat at the beginning but would get 90% of his calories from the feeding.

Our insurance does cover supplements if prescribed by a doctor so there is a chance this would be covered if we go this way some day.

My husband and youngest son were just in Pelham for the 2nd year in a row at the Silverstick Finals. They wanted to get up to Toronto both years to see the hockey hall of fame but ended up doing well and had no time to get there!

Let's hope you keep getting it from your foundation!
 
Congrats on getting to the finals! My son never made it that far. Has already lost in the SS local/regionals this year and, as this is his last in in the minors, he's missed his opportunity for SilverStick Stardom! :)

Too bad your son and husband weren't able to get to Toronto, however, it is still quite a drive from Pelham to Toronto (maybe another 2 hours...). Hopefully, they'll have another opportunity!
 
V's doc said the reason it isn't pushed more in USA isn't because they doubt efficacy, but because of pt noncompliance.
V did have the tube indwelling for the first three mos, and did go to school that way. Then she started taking it in and out, so easy, it takes ten seconds.

I really think it is the best thing for these kids, whether they use it as an adjunct to drugs or alone.
Note that V's doc NEVER restricted her food! She was allowed to eat right from the start, though he wanted the feeds running 24hr for the first 30 days. Then to 16hr, and on down until now it runs 8hr. She eats everything. He said food intake would NOT adversely affect the formula's benefit.

We never had any issue w/ins covering, but she is on a medical grade formula not available OTC.
 
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Interesting that the 'process' varies... my son's exclusive period was 2000 mls (3,000 calories) per night at a rate of 200 ml/hr. When introduced at the hospital, he was started at approx. 50 ml per hour and the rate was increased to 200 ml/hr within 2 days. Once he was at 200 ml/hr, it ran 10 hours overnight. He was discharged at this point. He was given the option of increasing the rate up to 300 ml per hour, assuming he was able to tolerate w/out nausea. During the day, he had only the clear fluids. Now, he ingests 1000 ml per night, rate is approx. 250 ml/hr - time is no longer an issue as, even at 200 ml/hr, would only take 5 hours. Also, he has it only 5 nights per week.

I will ask about medical grade formula if/when necessary. We do have a prescription for the formula, Tolerex, but it is also available without prescription.

Question - I'm curious..., as Violet has been using EN for over three years, how have you managed vacations? We did go away for four nights but were told to not take the two nights off the week before and after the 4 day vacation. But, we are planning on going away for a week or so this year and I'm not sure how to handle this. If necessary, we'll take the formula, pump, etc. with us but I'm also wondering if the drinkable versions would be more manageable??? However, don't want to mess with something that is working by changing the formula... Also, do you know if there any special arrangements are needed to take the formula (powder) and pump on the plane?
 
Hers isn't powder, it's bottled and ready to drink. I was paranoid about traveling with it and shipped a whole case ahead. I hate hassles when traveling and it was easier to just ship it and have it waiting upon arrival. The pump/bags I packed in checked suitcase, was freaking out thinking it would be damaged.

V never got up to the rate your boy is. She gets 1200cals now at 160ml/hr overnight.

I can't believe your ins won't cover. Ask you doc about using Vital Jr. It's peptide based, very easy to digest and comes ready to go! Super expensive but if covered, it'll be cheaper than paying for his current stuff yourself even w/copay. V tolerated it even at dx when her gastric motility was nil, and she was vomiting even water. And she gained like CRAZY on it.
 
LOL, I'm laughing because I was planning on carrying the formula, pump and bags in my carry-on!! Told my husband I'd be too paranoid to check it! Glad I'm not the only one who worries about everything!

I have a couple of gravity bags - haven't tried to use them but I may try before we go away, wouldn't have to worry about the pump.

I will ask our GI about Vital Jr. For now, I am paying nothing at all... but, as I said, I'm not sure why? :lol: I keep calling in the repeats and they keep covering the cost and sending a nurse! This is a bit silly but it seems that as long as the nurse continues coming, they continue covering the formula! Have no idea why; the dietitien said they would cover one repeat and if they covered more that I was NOT to question it. So, I go with it... :whistleinnocently: luckily, our nurse is very nice although, other than ordering supplies, I struggle to have something to discuss with her re Stephen every month. :)
 
That is good Tess that you guys have still been able to get the formula still with the insurance covering it. We had a rough time getting it had to go through a lot of hoops and then Caitlyn did not even use it. I have a ton left over and am trying to decide what to do with it.
 
Tess, I wanted the pump with me but I was afraid it would look like a weird timer device for a bomb. :lol2:

Kim, there's an organization called the Oley Foundation (they have a website) which helps tube fed pts, and connects people with unused formula to donate to folks who need it and cannot afford. Maybe they can help you get rid of it and to someone who can use it. Or you could sell it on ebay. I looked there when I was afraid ins wouldn't cover but thank God they did and still do.
 
Tess, I'm not sure about gravity feed bags but before we got our pump we gravity fed and it took 10 hours to get 5 cans in...although not that big of a deal if he does his feeds at night :)
 
Angie,

How much liquid was in the 5 cans? Right now, Stephen has 1000 ml per night. And, can you not adjust the flow rate in the gravity bags?
 
The only symptom was 30 years of chronic diarrhea. I hardly thought about it - it had become my normal. I never suffered pain nor fatigue. In fact, I ran marathons, did triathlons, climbed mountains, etc. Tons of energy! But then one night I suffered severe abdominal pain and was taken to the hospital by ambulance and was diagnosed with a small bowel obstruction caused by Crohns.

I am actually happy I wasn't diagnosed earlier because the medications available 30+ years ago would have done more damage than the disease. When I had surgery last year the doctor was expecting widespread damage, but the only sign of the disease was a 9 cm section with a stricture and a fistula between my small bowel and colon. Both were fixed and I am on no medication.

It is not always a bad thing to go undiagnosed, but then my disease is not typical.
 
Hi! I am a very very short 13.5 year old girl (about 8 inches shorter than peers) and im very very very nervous about not growing. I have not grown in 3 years AT ALL (height, weight, shoe, puberty) and we are trying to figure out why. I feel as though my family thinks its no big deal. " your FINE" they say, "i was a little short when i was young, too". However, i know this isnt normal and i BEGGED my mom to get me checked out. I also am very constipated and before the constipation i had diarrheah for YEARS! (not sure how it became the opposite?). Anyway, ive been tested for: celiec, bone age (my own age), 18 blood samples for god know what, stool tests for parsites, and a MRI for pituitary gland malfunction. Basically, everything so far is normal. However i believe i may have Crohn's. My parents arent really taking me seriously but asked the doctor about it anyway to stop my "whining" ( i just want my tummy better and to grow to be an atleast 4'10 adult because im only 4'5!). Turns out my grandma AND half sister have Crohn's (my mom told me), so that made her a little more willing to ask. Im getting tested on saturday but not with the "invasive" testing yet. They wanna see if i have any minor abnormalities that suggest Crohn's first ( i honestly have no idea which test theyre running). Anyway, does anyone have any words of adivce? Im scared.
 
Feel free to share my son's story. He was very short and stopped growing at a normal pace around age 11. From 13 to 13.5 he didn't grow at all. We started doing work up on him because of his growth chart decline over 2 years on the recommendation of our pediatrician. He had NO abnormal bowel sypmtoms at all. After a lot of normal blood test and work up for growth hormone deficiency, pituitay issues etc, they decided to do a colonscopy, video capsule endoscopy and upper GI. It turned out he had Crohn's disease in his terminal ileum only. This was enough to totally stop him from going through puberty and from growing. He was also deficient in iron. After a year on pentasa, fish oil, multivitamins and iron (no more iron now), he grew 5 inches and gained 30 pounds. He also finally started going through puberty. He had not gained any weight at all from age 11-13!

We had no family history. If your projected height is much smaller than your parents and you have not been staying on the same growthy curve percentage, I would be aggressive about ruling out Crohn's disease. You only have so much time to grow and go through puberty. Another interesting thing to share with you parents is that although my son thought he felt fine, he did report that he had more energy and actually felt better after several months of treatment. This all came on slowly and I don't think he ever realized that he wasn't feeling as well as he should.

Please keep in touch and let us know how you are doing. What tests are they performing first? Have they checked you for iron and vit D deficiency? That may help.

Take care. I think you are doing the right thing because even if they don't find anything, you will have peace of mind that you ruled things out. If it turns out that you are just going to be shorter than typical...no worries! You sound like a very bright girl who will be fine whatever way you meant to be!

Regards,
Nancy
 
Feel free to share my son's story. He was very short and stopped growing at a normal pace around age 11. From 13 to 13.5 he didn't grow at all. We started doing work up on him because of his growth chart decline over 2 years on the recommendation of our pediatrician. He had NO abnormal bowel sypmtoms at all. After a lot of normal blood test and work up for growth hormone deficiency, pituitay issues etc, they decided to do a colonscopy, video capsule endoscopy and upper GI. It turned out he had Crohn's disease in his terminal ileum only. This was enough to totally stop him from going through puberty and from growing. He was also deficient in iron. After a year on pentasa, fish oil, multivitamins and iron (no more iron now), he grew 5 inches and gained 30 pounds. He also finally started going through puberty. He had not gained any weight at all from age 11-13!

We had no family history. If your projected height is much smaller than your parents and you have not been staying on the same growthy curve percentage, I would be aggressive about ruling out Crohn's disease. You only have so much time to grow and go through puberty. Another interesting thing to share with you parents is that although my son thought he felt fine, he did report that he had more energy and actually felt better after several months of treatment. This all came on slowly and I don't think he ever realized that he wasn't feeling as well as he should.

Please keep in touch and let us know how you are doing. What tests are they performing first? Have they checked you for iron and vit D deficiency? That may help.

Take care. I think you are doing the right thing because even if they don't find anything, you will have peace of mind that you ruled things out. If it turns out that you are just going to be shorter than typical...no worries! You sound like a very bright girl who will be fine whatever way you meant to be!

Regards,
Nancy
 
Wow boymamma! Your son sounds a lot like me. I fell of the curve at 11, grew VERY slow from 11to 12, then my growth completely stopped. Here i am, at 13.5 the same exact height and weight (actually a few lbs less but i wasnt thin at all before, now im "healthy thin" according to my doc). I kinda want to have Crohn's just to have an answer. Anyway, i guess earlier i had normal complete blood count, a C-reactive at a normal level, and a second normal complete blood count. Now, im not sure what these things really are, but thats whats in my doctors email. Now, a half year later, my doctor wants to repeat the blood counts, imflammatory markers, and do a few other more obscure antibody tests that can more specifically identify of exclude Crohn's. Do you think they can just put me down as not having Crohn's without a colonoscopy? I really hope i can be like your son: having it mild and getting what sounds like great treatment and results!

BTW im typing on an ipad, forgive the little errors in my type!
 
I know my son's Endocrinologist told us that mild to moderate uncontrolled crohn's would not effect his growth. She said nutrition and his weight would. He was in the 22% for BMI and she said anything below 20% stops growth completely. She said she sees this very clearly with her patients who take Ritalin for ADHD. It suppresses the appetite, they stop eating, then stop growing. I don't know what your BMI (body mass index) is but if you are very thin I would work at gaining some weight. My son is now in the 50% (was at 75% before crohn's) and is growing again.
 
Are you saying your son is in the 50th percentile? If not, how would i go about figuring out percents for the bmi calculator? My bmi is 18.5 and i am in less than the 3rd percentile for height and weight and I think that means that 97% of kids my age are taller and bigger? Well, thats why im getting checked out in the first place! That and my stomach issues and my family history of Crohn's.
 
Mild Crohn's can effect growth depending on the location and blood levels. Chronic inflammatory diseases cause a low IGF-1 which my son had. This is what maes growth hormone work for linear growth. Interestingly it is also low with poor diets and anorexia. Crohns will effect growth in several ways, some are direct and some indirect: That being said...there are multiple other things that can effect growth that are more common!!

1. With flare, metabolism is higher and appetite is lower causing malnutrition which efffects growth.
2. Inflammation causes a leaky gut so the nutrients do not get absorbed or broken down even with a good diet.
3. There is research showing there is a direct inhibition of IGF-1 from the inflammation. It has to do with cytokines.
4. Location, location, location. If your Crohn's is in the ileum, it will effect growth more than other areas due to the nutrients that get broken down and absorbed there.

Getting Crohn's into remission assists with growth in many cases but there are still a lot of kids (especially boys) who end up shorter due to the IGF-1 and other unknown effects. If kids have low IGF-1 chronically, they can consider growth hormone to assist with catch up growth. Some insurances will cover this but not many.

If growth is an issue with a diagnosis of Crohns....remission is the goal and I know that enteral nutrition works better than steroids in this case.

If you can't eat a lot more, try nutrition drinks and supplements. Also, if you have difficuly gaining weight, eat a high fat diet. It is okay for you when you are growing if you can't put on weight.

Best of luck once again!
 

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