New to boards. 12 yr old son dxed w/ Crohns with negative biopsy and no diarrhea symptom

[chefmommaof6]

Hello. My dh and I just received the Crohns dx for our 12 year old son the start of the year, and I have been trying to read and educate myself as much as possible as we are trying to make decisions regarding treatment, diet, and medications. My son's main symptoms are headaches, intermittent low gradefevers, excessive fatigue, tummy aches, and he has quit growing in the last two years or so, falling off the growth charts. Family doc originally sent to an infectious disease doc last winter, but they never found anything, so we quit looking hoping it would just resolve itself. Around thanksgiving, I realized he seemed small compared to his friends, and asked doc to chart growth. Doc was then concerned, recommended we see an endocrinologist, but I pushed to see a ped GI dr as well, thankfully. GI initially thought my son was probably a txtbook celiac, but decided to colonoscopy to check for Crohns at the same time as endoscopy. Blood test and biopsy results for celiac were negative, but he found inflammation at the terminal ileum, and immediately after thought biopsy would confirm crohns disease. However, biopsy was negative. But he still diagnosed with crohns after checking blood for some sort of markers some crohns patients have. My son was off the charts high with these. So he believes it is crohns and his recommendation is to put son on immunosuppressants for life, in addition to asacol and Entocort for atleast three months for the flare. With no diarrhea and neg biopsy, we are wondering if this is a solid diagnosis orif there is possibility of another dx we are missing, also if we go on meds how will we know if they are working or not, with no diarrhea symptom to monitor? We have started the asacol, omeprazole, and Entocort, but have held off for short term on immunosuppressants( doc recommends 6mp, I think) until we could get a second opinion.I was wondering how many kids on here also exhibit no diarheaa symptoms, how they judge when their kid is having a flare up, and how often kids do the immunosuppressants or not. We are also attempting gluten free diet to see if it helps, though I am not sure how long a test of dietary changes will need to be to be telling if it is helping or not. Thanks in advance for any info. All of this is stilll pretty over whelming.

 

[Clash]

Welcome to the forum! My son was diagnosed early last year at 15. His CD was also located at his TI. Our was confirmed by biopsy, though. C, 16 now, never had a problem with D he had fatigue, fevers and mouth ulcer and growth issues as well. His CD was severe and we went straight to remicade and recently added methotrexate. He is doing well right now(touch wood).

I hope the second opinion goes well and I'm sure other parents will be along soon with their experiences.

 

[my little penguin]

Hugs and welcome
My DS was dx at age 7 without any signs of diarrhea .
He also had not gained weight in over two years . Growth was starting to stall as well .
He was placed on pentasa first. It did nothing for his stomach pain or fatigue.
We quickly switched to EEN and 6-mp.
We did get a second opinion on whether he had crohn's or not prior to 6-mp since he did not have classic signs ( bloody diarrhea) .
He did have multiple granulomas and inflammation present on his biopsy slides.
Second Gi agreed DS had crohn's.
We knew DS was not flaring when his symptoms went away.
No more
Fatigue
Stomach cramps /aches
Temenusus (sp?)
Rectal prolapse
Vasculitis( this presented later)
Chronic vomiting
Constipation
Joint pain
Leg pain
Night sweats
Nausea
Lack of appetite

He also gained weight close to 20 lbs and grew some.
DS had to be on pred for close to 5 months and switch from 6-mp
To methotrexate to remicade ( got another opinion once this was Putin place )
He finally is back to normal .

It took DS over a year to get to normal and find the right drug combo

Www.improvecarenow.org
Has a list of top Ibd docs
For kids in the us .

 

[my little penguin]

https://improvecarenow.org/about/who-we-are

 

[xmdmom]

Hi there! Welcome to the forum.

You asked a great question "With no diarrhea and neg biopsy, we are wondering if this is a solid diagnosis orif there is possibility of another dx we are missing, also if we go on meds how will we know if they are working or not, with no diarrhea symptom to monitor? "

It's hard to know if it's a solid diagnosis without knowing what the biopsy showed, and what lab markers for Crohn's he had. Your doctor thought it was Crohn's by endoscopy so if he's an experienced Gi, that's pretty supportive of the diagnosis by itself.

I'm wondering what you mean by a negative biopsy. Do you mean no granulomas or no inflammation? Many people with Crohn's have biopsies w/o granulomas but they do have inflammation on biopsy.

There are other causes of ileitis, but most can be ruled out by the clinical history I think http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2914216/

Did your son have an upper endoscopy and a small bowel study or MRE to check for inflammation in other areas of his gi system? Finding inflammation in other areas is often helpful in making the diagnosis.

I do know some people with Crohn's do not have diarrhea at diagnosis but I don't know what %.

Since your son didn't have diarrhea, I'd think your son's doctor would follow labs (CRP,ESR, HgB, etc), especially if they were off at diagnosis, and weight gain and statural growth and energy level, and of course watch for GI symptoms.

Getting a second opinion before starting on immunosuppressants makes sense to me.

How long has your son been on meds? Is he feeling any better?

 

[Sascot]

Hi and welcome. Sorry to hear about your son's diagnosis. I know exactly how you feel. My son has no symptoms at all at the moment apart from one peri anal fistula, so I also feel it hard to put him on the 6mp when I can't "see" if they are working or not since he has not diarhhea, no pain, no weight loss, etc. Also his bloods never show anything either which doesn't help.
Unfortunately one has to trust the doctors at some point and immunosuppresants are the way to go at the moment. Hoping in the near future they will find something a little less scary that will work!

 

[Dexky]

Welcome! I certainly don't blame you for wanting the 2nd opinion. Crohns can obviously present in many ways. I know how frightening it can be to accept these meds. I don't blame you for wanting to be sure. Good luck!

 

[AZMOM]

I don't blame you for wanting a second opinion. If you need that, do it! Even those of us whose children had a more 'classic' presentation have questioned. It's very natural.

The important thing is to keep moving forward and ether confirm or rule out what you've been told. Id suggest you get a copy of the labs and pathology report and read them yourself. This will help you either understand and accept the diagnosis or confirm your wish to get another doc.

If you poke around these boards at all, youll find that what most of these kids have in common is that they are all different. . Please let us know what we can do to support you.

Big hug -

J.

 

[dodie74]

hi and welcome to the forum. My son shows no symtoms either apart from anal fistula which he had over 2 years ago. he was diagnosed after endoscopy, colonoscopy and cam capsule. it is scary but my son seems to be doing fine on 6mp so far, touch wood. just want to wish u good luck, this forum is superb when we feel anxious and worried about things. xxxx

 

[Crohn's Mom]

Hi Chef and welcome

I can't blame you for wanting a second opinion either; you all need piece of mind. Although, it sounds like your current GI is pretty positive of what is going on.
I assume the blood test he did was the Prometheus test to confirm Crohn's?

My daughter never had the classic diarrhea either, but she did have positive biopsies showing Crohn's.

However, my son (currently undiagnosed), doesn't have classic symptoms either but this sentence about your son caught my eye and sounds just like him

My son's main symptoms are headaches, intermittent low gradefevers, excessive fatigue, tummy aches, and he has quit growing in the last two years or so, falling off the growth charts.

He also had non-specific chronic inflammation on biopsies, but our doctor didn't seemed concerned with that.
He's getting ready to have a pill cam done ~ were just settling insurance issues first ~ and hopefully something will show on that and give us more solid answers.

Hopefully the "signs" you'll see as to whether or not he's feeling better is lack of stomach aches, headaches, etc...but also, I would think that if the diagnosis is correct, and the medications lesson the inflammation than you will begin to see his growth restart again rather quickly.

Best of luck, and please stick around and let us know how he does ! :hug:

 

[Tink572]

Hi! Welcome to the forum!

My son didn't have diarrhea either. He had more of a problem with constipation. The biggest thing for him was also lack of growth. He is by far smaller than his friends. I insisted on going to an endocrinologist (GI and myself thought his Crohn's was well controlled because he wasn't having typical Crohn's symptoms). The endocrinologist wasn't convinced so we went to a different GI who ordered scopes and found out he had severe disease in his terminal ileum. He has since started on Remicade and had surgery to have about 4 inches of the terminal ileum removed and has gained about 18 pounds and grown about 3.5 inches since surgery about 5 months ago.

We really watch his blood work now to determine if he might be in a flare since in the past he really has not had much in the way of diarrhea or pain when he was really bad off. He has done well since surgery. I think the best indicator for him that he is not flaring is that he is very active, has a great appetite and is growing and gaining weight.

Best wishes to your son!!

 

[Aniuko]

Welcome to the forum. My daughter was diagnosed when she was 7 (12 now). We were looking for diagnosis for 6 months as she had no diarrhoea, no abdominal pain, no constipation, no headaches. She was just tired in the afternoon, had low fever and wasn't growing much. After blood tests we saw low haemoglobin and low iron and that led a very wise paediatrician (not even Gasto) to think she might have Crohns. The biopsy however made it clear it was Crohns. I can tell that she has a flare-up (so far two) when she just gets a bit more tired, her skin gets this funny greyish colour, then I do blood test and we can see CRP elevated, haemoglobin and iron low - that is usually a sign. Also our favourite paediatrician does ultrasound and in both cases he saw the inflammation before we went to Gasto 100 km further. Hope it helps a bit.

Ania

 

[SoccerMom]

Welcome! I am sorry to hear about your son's experience, and I think your feelings of overwhelm are probably understood by many here. My son is also 12 and was diagnosed with CD seven months ago via endoscopy/colonoscopy (confirmed by positive biopsy). He had the same symptoms you described which were linked to anemia caused by the disease, as well as loss of appetite and weight loss. He had just one day of diarrhea more than a month after the headache, lethargy, etc. started. After diagnosis, he was started on Entocort for 8 weeks, exclusive enteral nutrition for almost 9 weeks, and remains on Pentasa as well as enteral feeds 5x week. He started feeling better almost immediately (started back to sports and great energy level weeks later) and blood values (CRP, ESR, hemoglobin, hematocrit, etc.) that were way out of normal range all returned to normal, indicating remission. He has gained 25lbs and at least 1 inch. We have been experimenting with the Specific Carbohydrate Diet since he went back on solid foods.

Once you feel that you have a confirmed diagnosis, there may be value in asking about enteral nutrition. Some physicians don't recommend it because they believe it is difficult for the child and family; however, we have been so grateful for it. There are groups on this forum for enteral nutrition, several articles cited in the research section of the forum, and a good intro book titled, Beat Crohn's: Getting to remission with Enteral Nutrition by Oppenheimer.

Stay strong!

 

[Jenn]

Welcome and sorry to hear of your son's dx. My son also is dx with Crohn's and had the same presentation. We started on 6mp first, it's a good first step but it takes several months to become effective. I think the biopsy is pretty gold standard, maybe the negative result is just that his disease hasn't progressed far into the stomach or large intestine where they biopsy in endocsopy/colonoscopy - can't do scopes or biopsy of the small intestine and that's where all the absorption of nutrients is done. To confirm Crohn's, they might do an MRI or capsule pill-camera to see the small intestine better.

It is very overwhelming. Going gluten free is a huge commitment and there's not much evidence that it helps Crohn's. You could check with his GI to see if they tested for Celiac before investing the time. EEN would be more effective than gluten-free, I think.

Hope you get him turned around soon.

 

[jmckinley]

Hello from Tuscaloosa and welcome to the forum. I am sorry you've had to find your way here, but if you need help or support, this is the place to be. My first question is "Are you going to Children's?". That's the place to go for IBD in Alabama even though I know it's a drive.

My son was also 12 at Dx. It is very hard to wrap your mind around having a child that will possibly have to struggle with an illness for the rest of his life. The name of the game with IBD is get the inflammation under control. We know our meds are working by bloodwork and physical growth. He also tends toward very high CRP and SED rate (the inflammation markers in bloodwork) when he is sick. Our kids sound very similar. Ryan has never had horrible diarrhea to contend with, so it's been hard to keep an eye on his disease. I've learned some other first symptoms like attention span, dry-cracked hands, skin color, that tell me to get some blood work done. There are some kids though, who have regular bloodwork despite terrible symptoms.


We did 6mp for 2 years with very good results. I know all about reading the possible effects of the drugs, but it really did work. Our only side effect was hair loss which was just a nuisance to clean up and not noticeable. We tried a Paleo type diet also with no results. It works for some, but we found no help. We do try to eat a limited, heathy diet, but that's just in addition to our meds.

Some other suggestions: a good probiotic (we use Ultimate Flora Extra Care from CVS), fish oil, and a multivitamin.

Is he taking prednisone to get the inflammation under control?


You are welcome to message me if you have any questions or need to talk. Since we are so close, I'd be happy to help!

Hugs! It will get better!

 

[chefmommaof6]

Thanks, all. I am still learning to speak some of this medical lab lingo, so please bear with me. Lol The GI told us after the colonoscopy, that his initial impression based on visual exam of the gut was crohns at the terminal ileum, expecting the biopsy to confirm it. However, my husband said the doc said the biopsy was inconclusive, not that it was negative. So I misunderstood about that. And the tests he did for markers in the blood had to do with levels of some sort of antigen/antibody in the blood against yeast and something else. I wish I had got a copy of all the labwork; suppose I will now ask for it when we go back in two weeks. Also, he has been anemic in the past, but his actual bloodwork the day of the colonoscopy/ endoscopy looked IMPROVEd from what it was a year ago, and no noticable vitamin deficiencies ---kind of weird, it seems. Asked my son about constipation; he said he does deal with it maybe once or twice a week. He has never noticed blood in the stool. Right now, we have been thinking of going to Vandy for the second opinion, or less likely to Cincinatti since its six hours away. Our son is already in the Vandy system, but our ped gi mentioned he has referred people to Cincinatti before for a second opinion, that there is a really good crohns center there? Anyone here dealt with either hospital have a doctor they really like? Or is Childrens in Alabama better?

 

[AZMOM]

Just fyi Two of us on the forum see the head of peds GI at Vandy and are pleased. Feel free to PM me for more info!

Julie

 

[chefmommaof6]

I should also mention they did a CT scan of the middle of his stomach region/small intestines to look at what they couldn't see by endoscopy and colonoscopy, and it was normal.

 

[my little penguin]

We got our second opinion from Cincy Ibd center.
They are very good there
We were pleased .
Pm me if you want details.
Inconclusive biopsies may have meant they did not find a granuloma
Dusty's children both have crohn's but do not have conclusive biopsies
Pathologist need certain features to check the crohn's box
As a dx.
If there are granulomas then the box gets checked if not then no check.
Get a copy of the biopsy report it will help you .

 

[xmdmom]

My son didn't have granulomas but had ileitis. The head of IBD at Cleveland Clinic agreed it was Crohn's w/o any question. My son's clinical history (diarrhea, weight loss) and labs (elevated Crp , anemia) were typical.

 

[jmckinley]

Children's at Cincinnatti was ranked #4 I believe. One of the GI's there used to be the head of the GI dept at Birmingham Children's. I am still friends with him and talk to him occasionally. My son deals with constipation occasionally too. For a long while, he had to take miralax daily. We had a test that was sent to Prometheus labs that came back inconclusive for Crohn's, so we are never sure. It was just that his symptoms and colonoscopy results made Crohn's the best dx. It's an odd disease that has so many different presentations.

Keep a journal of some kind with blood test results, med/dosages. Start now. We have an excel spreadsheet with all of our info. GI hates to see the folder coming

 

[DustyKat]

Hi and :welcome:

I'm so very sorry to hear about you boy, bless him...:hug:

You have received wonderful advice and guidance so I don't have much to add except to answer a couple of your original questions...

Neither of my children had diarrhoea or blood as a symptom of their Crohn's and they both suffer with Ileal Crohn's, like your lad.

My daughter was diagnosed during emergency surgery. Her symptoms leading up to her diagnosis were much like your son's...headaches (with or without accompanying vomiting), stomach/upper abdomen pain, tendency to constipation, eye pain, knee pain, fatigue and delayed puberty.

My son was diagnosed very quickly and with few symptoms, his sister's legacy no doubt, but the pain he had was more classic than that of his sister's. His diagnosis was made during a colonoscopy based on what he GI saw in the TI. When the biopsy results were received they did not support a diagnosis of Crohn's as there were no granuloma's present. A few months later he required resection surgery and again pathology did support a diagnosis of Crohn's because of an absence of granuloma's. The surgeon also stated that is was Crohn's nonetheless and I do agree with what the GI and surgeon have said.

If you have time on your side and have doubts as to the diagnosis and/or treatment being prescribed then I would always recommend getting a second opinion. It is difficult enough to make decisions for ourselves let alone on behalf of the person in our lives that we hold so very dear. Even if the second opinion recommends the same treatment the validation is priceless.

As to judging a flare, diarrhoea is but one symptom of Crohn's and if your child doesn't have that then you look to what is characteristic of their flares. Then you look to the clinical signs...bloods, feacal tests, imaging and so on.

Both of my children are on Imuran which the parent drug of 6MP. They are on it as a maintenance medication following surgery. They are both in remission, 6.5 years and 21 months respectively.

Good luck and welcome aboard!

Dusty. xxx

 

[Dexky]

I wish I had got a copy of all the labwork; suppose I will now ask for it when we go back in two weeks.

My son is the other one AZMOM was talking about. I'm not trying to sell Vandy but I can go online and get all EJ's lab results at any time. I would think all the major hospitals would do this nowadays.

 

[Patricia56]

My son has never had diarrhea. He gets constipated instead. Don't know if that's an issue for your child.

I would go for a 2nd opinion if you feel it would be helpful but there aren't very many things that would explain your son's symptoms plus the TI inflammation besides Crohn's. The only couple of things I know of are worse (in my opinion) and have lots of other symptoms that he doesn't have.

Growth failure is a sign of moderate to severe disease - no matter what his other symptoms might be.

Moderate to severe disease is normally treated with immune suppressants. Typically 6-MP or one of it's variants, Methotrexate or a biologic like Remicade.

I would not say that your son will be on these meds "for life". You make it sound like he's been sentenced to prison.

First of all, he can stop them at any time. If he gets into solid remission and you or he wants to stop the meds you can certainly do so.

Second, there are new treatments in the pipeline and you don't know what might be available next year or 5 years from now that will replace the meds we're using now.

Third, when he is better thanks to these meds and you have your son back - with all the energy, exuberance and joy that he should have, no more headaches, pains, fevers - you will probably say - why didn't we do this sooner.

It is very hard to accept that this disease is eating away at our child's insides for reasons that are kind of mystifying to me. If someone had told me my child had cancer I would not have questioned the diagnosis, I would have braced myself for difficult treatment decisions, I would have accepted that something invisible was threatening my child's life and health. Why I couldn't do that when my son was diagnosed with Crohn's I don't know.

But in many ways it's the same. Crohn's can kill and it used to kill before immune suppressant medication was available. Before 6-MP the average life span of someone with Crohn's was 56 or 57 I think. 80% had major abdominal surgery. 50% had more than one major abdominal surgery. The majority lived on prednisone - a horrible drug that can destroy your physical and mental health.

It's a shock - brand new. You need time to grieve and come to grips with this change. Let the future take care of itself, my grandma used to say. Don't borrow trouble my mom would say. Make the best, wisest choices you can today. None of them are set in stone.