Variable symptoms (undiagnosed and possibly premature)

[LittleC]

variable symptoms (undiagnosed and possibly premature)

I may be getting ahead of myself posting here. I don't really know where we stand with anything. I have an almost 6 year old with chronic diarrhea and poor weight gain. I have tried several times to write about this succinctly but I can't seem to. A variety of things have been going on since about April of last year..but the consistent thing is recurrent/chronic diarrhea and the weight.

We've tried a lot of things: eliminating milk (twice), done numerous stool studies, and tested for celiac, food allergy, cystic fibrosis, and had various other bloodwork. Nothing helpful in any of that.

The diarrhea is really variable and has been going on a long time- on and off for 10 months. One day he could have to go 10 times and the next he'll be fine. He was having a lot of stomach pain over the summer. He had an xray which showed a lot of gas but no constipation (which is what they were initially looking for). We saw a jerk GI, nothing came of it. Over the last few months he's had less stomach pain but more diarrhea. (He also is not eating much which may account for the relative lack of discomfort..(?)) The longest he's been is about 2 weeks without diarrhea, then he'll have it for a day or 3 or 4 and it disappears as suddenly as it started. Some days he has normal stool and diarrhea and some mixture all in one day. It's bizarre and completely unpredictable. When it is happening his stomach makes tons of noise (you can hear it from across the room) but he denies pain. It sounds like he's starving except it usually occurs after eating. Candy seems to precipitate this (thank you valentines day) but clearly it isn't the only trigger. He's had two episodes of extreme but very short lived lower back pain recently, not directly associated with diarrhea that I can tell.... but at this point I don't know what I know! He hasn't gained weight in a year and is now below the 5th percentile. He doesn't have any bleeding and isn't waking at night. I have long thought this must be an unidentified food issue, and I had ruled out IBD on the basis that the pain is not severe and lack of blood. Now that we are at the point of doing a colonoscopy I've read a lot more and I see that I may have been premature in ruling this out.

Believe it or not, that is the short version.

We have a new GI doctor who convinced us that we need to do scopes. This is scheduled in a couple of weeks. I was convinced when I was there talking about it, but I keep having second thoughts. I really don't want to put him through it if we don't have to (obviously). I recognize my own fickleness here. On a bad day I am sure something is wrong, but a couple of good days in a row and I'm suddenly less sure.

So my current questions: Would he not have more consistent diarrhea with IBD? How can it go back and forth in such short periods of time? what could be the offending substance in candy?

I need to get my head straight about this. Any thoughts appreciated. Thank you in advance.

 

[imaboveitall]

Hello! I see you are also in VA. Violet's GI is internationally known and has three offices around VA; PM me if you'd like his name. He is amazing and an incredible, caring human being as well as skilled clinician.

You'll hear from others on here who shall say the same: IBD can present in MANY ways.
My daughter has never had diarrhea, EVER. Her stools are as perfect as you would wish them to be. Some folks present with constipation.
Some Crohn's pts also have IBS, that may account for the come/go pattern you are seeing.
There are other things it could be, but without proper diagnostics including biopsies you cannot know.

Scopes are really necessary. Also ask about a SBFT and capsule endoscopy as scopes do not show the entire small bowel. Violet's scopes, top and bottom, are always NORMAL and only a cap endo revealed significant inflammation in her TI.

I'm new here myself; welcome and avail yourself of the knowledge here, it's awesome.

 

[Tesscorm]

Hi,

I'm sorry your son is not well. I totally understand how frustrating it is when they seem well one day and not the next! But, I do think the scopes are a good idea.

As said above, Crohns does present itself in so many ways! My son was diagnosed in May and 'some' of your son's symptoms seem similar to my son's.

When my son initially became sick, he would feel lethargic and have no or reduced appetite, looked pale, would develop a fever (up to almost 40C) and had diarrhea. The fever would last 2-3 days and the diarrhea another day or two, then all would be fine for a while. Sometimes the 'good' periods would last only 3-4 days, sometimes 2-3 weeks. This went on for approx. two months as we would test, results would be fine; he would feel 'better' and we'd think it had been just a bug, then it would return and we'd do more tests, etc. Over the two months, he lost approx. 20 lbs. Some other symptoms which we didn't relate to crohns were night sweats which would come randomly with or without a fever, canker sores and 'smelly' gas and BMs (whether or not it was diarrhea). When he had diarrhea, he was going 4-7 times a day but never had any 'urgency', never felt he had to 'rush' to the bathroom, never any blood nor any pain.

He also had a sore back most of last winter. Not sure 'which came first' but he'd hurt his back early in the fall so the soreness was blamed on that injury not healing due to repeated hockey hits/twists, sitting hunched over the computer for hours! and the fact that he'd grown about a foot in the preceding year. His GP suggested that he take an ibuprofen before games/practices when his back was sore to alleviate the inflammation. In hindsight, some months, he was probably taking 15 pills a month. I've wondered if his overuse of ibuprofen triggered the crohns, however, as his back hasn't hurt at all since beginning treatment, his GI now believes that his intestinal inflammation may have caused his back inflammation (then again, he also hasn't had any ibuprofen:yrolleyes.

My son was finally diagnosed when we took him to emergency at a children's hospital with a large IBD clinic. Within hours, he'd had bloodwork, stool tests, ultrasound, x-rays and we were given a tentative Crohns diagnosis, confirmed by endo- and colonoscopies a few days later.

But, as imaboveitall said, the scopes do not show inflammation in the small intestine although my son's ultrasound and x-rays did indicate swelling in that area. My son didn't have a SBFT or capsule endoscopy but did have an MRE to 'see' the small intestine.

Good luck! I hope you find some answers quickly! :ghug:

 

[mickey]

The trouble in candy is the sugar. You should find relief for him if you can completely eliminate sugar from his diet. Read up on the health effects of sugar and you will see how it can breed disease. A suggestion...

Secondly, yes, the back pain is related to the diarhea. Unhealthy belly, aches in back and many times allergies get worse.

Perhaps try a strong probiotic on a daily basis for him? It can balance the belly and he should see some good results in a short time (I saw it within a day). Each person is different, but when I was in worse stage of Crohns, prior to diagnosis, I began using digestive enzymes and those helped as well. I took them with each meal.

good luck!

 

[blessedw4]

Hi,
My 11 y.o. daughter has crohn's. Whenever she has anything with high fructose corn syrup (HFCS) or any corn products her symptoms get much worse (diarrhea and abdominal pain). HFCS found in about everything esp candy, pop, cereal. Eliminating that from her diet has helped a lot. But of course she is not feeling well today, because she had her valentine's party at school and ate some candy. Also dairy and a lot of sugar make things worse for her. Keeping a food diary can maybe help you figure out if it is something in the diet making things worse. I know you are hesitating having the scopes done for your son, but something is going on with no weight gain in a year (this also happened with my daughter along w bloody diarrhea). They can't treat your son, if they don't know what they are treating. Good luck to you

 

[Dexky]

I'm new here myself; welcome and avail yourself of the knowledge here, it's awesome.

That knowledge has grown exponentially of late, I'd say!!

LittleC, welcome to the forum! My number one concern would be the lack of growth and weight gain of a 6 year old for an entire year. I suspect you are already resigned to the scopes anyway but I just want to add my encouragement. Good luck and let us know how it goes!!

 

[izzi'smom]

Agreed that he needs a scope...he is suffering and you want to know why!! After weeks of bloodwork, hospitilization, stool cultures,and antibiotics they diagnosed dd with a scope. While it doesn't show the small intestine I would only do further testing if the scopes are negative. I personally avoided the ct and. Small bowel follow through because of the radiation and izzis age.
We did a mre when she started having more pain and some vomiting issues to ensure she didn't have strictures.
My general thought when considering testing is will it change her course of treatment annd is it the best possible test to find what we are looking for.
Such a hard time for you both...I will be thinking of you and hope you get some answers soon!

 

[dannysmom]

Hi. ... another member in support of the scopes. Your son should be out for the scoping, so the worst part will be the prep and morning fasting. I hope you get an early appointment. Good luck.
(Also, I read here that a couple of kids did not feel any abdominal pain yet they had Crohn's ... it seems to be different for many.)

 

[LittleC]

HI everyone. Thank you.

At this point I *have* resigned myself to the scopes. I'm trying to figure out what I think about it in the meantime...of course trying to parse the likely outcomes, even though I know it's not possible. We've bothered him a lot already and gotten no answers. I would just like to leave him alone. Of course, I would also like him to stop having diarrhea. So...

In response to posts- we've done probiotics. And I kept a detailed food diary for most of the summer. Was unable to pinpoint anything. I stopped and have recently started again but it's not really enlightening. I know candy will do it, but since candy is infrequent there must be other triggers also.

Also I did read the posts about "no symptoms" etc. Honestly it looks like someone could have practically any presentation from ultra sick to outwardly fine and still have crohn's. But I still wonder if he's too 'well' for us to really be considering this. I pretty much expect to do this scope and find absolutely nothing, at which point I will no doubt be relieved but also feel like we overreacted.

He's been good now for 3 days in a row, so I am into my doubtful mode again. LOL.

thanks

(BTW this forum is really great. I think I have read the entire thing. )

 

[imaboveitall]

Good point, Izzi'sMom, scopes if pos may eliminate need for further testing.

Scopes are not a big deal, V's prep is liquid diet for five days prior and clear liquids 24hr prior, NO LAXATIVES.
We use the same anesthesiologist every year and he puts her in a twilight sleep. Within two hours post-procedure she is back to normal; her scopes are always in Aug and she has gone swimming every time the same afternoon.
Request the FIRST procedure of the day slot. We always get this as it means they can end their fast sooner, rather than wait until midafternoon. V goes in at 7am and is out by 9.

 

[imwood]

HI everyone. Thank you.

At this point I *have* resigned myself to the scopes. I'm trying to figure out what I think about it in the meantime...of course trying to parse the likely outcomes, even though I know it's not possible. We've bothered him a lot already and gotten no answers. I would just like to leave him alone. Of course, I would also like him to stop having diarrhea. So...

In response to posts- we've done probiotics. And I kept a detailed food diary for most of the summer. Was unable to pinpoint anything. I stopped and have recently started again but it's not really enlightening. I know candy will do it, but since candy is infrequent there must be other triggers also.

Also I did read the posts about "no symptoms" etc. Honestly it looks like someone could have practically any presentation from ultra sick to outwardly fine and still have crohn's. But I still wonder if he's too 'well' for us to really be considering this. I pretty much expect to do this scope and find absolutely nothing, at which point I will no doubt be relieved but also feel like we overreacted.

He's been good now for 3 days in a row, so I am into my doubtful mode again. LOL.

thanks

(BTW this forum is really great. I think I have read the entire thing. )

No growth in a year is itself a HUGE symptom, Momma! Don't doubt yourself! And recurrent bouts of diarrhea each month are a huge symptom! He isn't well! Sounds like you had a jerk doc that was so bad he made you doubt your own motherly instincts. With monthly bouts of diarrhea that make him feel like crap *no pun intended* for days at a time, you don't want to wait for it to get worse.
My daughter is in the same boat. She has normal poops for days, sometimes 2 weeks, then a day or two of unbearable LLQ pain, moaning even in her sleep, and awful diarrhea. Then, she pops out of it and is back on top of the world. The thing is though, she's 10, and this started in November. She remembers how she felt *before.* When she wasn't slowly slipping into feeling more tired, all the time. She notices that her energy just isn't where it was before. She falls asleep in class and can't concentrate like she could, even in the intermission weeks when her gut is fine. Your son is so young, he might not be able to connect or notice or verbalize how he felt before this all started. But I guarantee if his weight and growth has dropped off (she also dropped from the 14th to the 5th % in ht/wt in the last yr) then his body is suffering in ways that are not apparent, and you don't want to wait until it is so apparent.

 

[imaboveitall]

LittleC, I posted and then saw your last post; I'll reemphasize that YES indeed, can present from totally normal to desperately sick.

V. was ASYMPTOMATIC for 3 years, though quite ill at dx. She still *looks* great though has zero energy. Don't be fooled by how good he looks or how well his GI tract functions sometimes. That is an influencing factor I can relate to. I covered every differential dx I could come up with (I have med/sci background) because V doesn't present as I felt a Crohn's pt would. We have physician friends/ex-colleagues of mine (not GI men and not treating V) who STILL question her dx and are against her treatment plan.
I'm not saying don't question or don't seek differentials as I did and you should! Just know that Crohn's CAN and DOES have atypical presentation.

Great post, Imwood!

 

[Tesscorm]

Just a thought... when Stephen was on the liquid-only diet, he was allowed clear candies, gum, etc. but his dietitien told us to avoid all gum with sorbital as it can cause diarrhea. LittleC, I'm not sure if you son sometimes has gum to in place of candy but maybe there's a correlation???

I think I was trying to find sugar-free gum for Stephen at the time but, in any case, the ONLY gum I could find without sorbital was Juicy Free.

 

[LittleC]

Honestly, we often think he seems vaguely unwell but can't pinpoint anything. I see things that might mean something but then again, they could be nothing.

Part of my frustration is just confusion. We were looking at the GI stuff over the summer before we saw Dr. Jerk. Then my son got pneumonia for the third time and we got distracted from the diarrhea as the primary issue. Suddenly we were talking about CF and immune deficiency... I never really thought CF but I let the immune issue get into my head .... I lost perspective a little bit. I do not want to lose perspective again.

When I write this he sounds sickly, but he is a cheerful and upbeat little guy, goes to school, and etc. I'm actually not even sure myself if he is sickly or not! I think he should look better, but maybe I've just been thinking about all this too much for too long. Does that even make sense?

 

[LittleC]

re: sorbitol - I think sorbitol is a trigger. I figured that one out after several summer incidents where he had huge problems ...guess what it was from! Sushi. Sushi in the packages from Pacific Tsunami (military commissary counter) and also from Trader Joe's contain sorbitol. It was the only thing I could figure out at the time and we've avoided it since. It is also in children's vitamins. I don't think he can tolerate it in even small amounts. And BTW I was horrified when read the labels on all that packaged sushi...all kinds of stuff in there that shouldn't be.

No sorbitol in the recent candy episode. Tootsie rolls, gummies, starburst.

 

[Tesscorm]

LOL, perfect sense! My son is naturally very fair skinned - I'm constantly questioning if he's pale, or more pale than yesterday, are the circles under his eyes the 'normal' ones or are they darker because of anemia???? :yrolleyes: And I'm sure sometimes it's just me thinking about it too much!

It's horribly frustrating waiting for an answer :confused2:... you read and learn so much, one moment you're absolutely sure their symptoms are a complete match for something, the next moment, you're full of doubt! :eek2: All I've found is that often my instincts are right that 'something' is wrong (so follow those instincts and check it out!), however, almost always my own unqualified 'diagnosis' is wrong (and, the end result, is usually not as bad as I've envisioned).

:ghug:


... our replies crossed... was replying to your earlier post.

 

[imaboveitall]

Here's the thing: if you do the diagnostic testing, you'll know. The wondering is the worst feeling ever. Undiagnosed and untreated IBD can be dangerous. It for sure can be life affecting as far as growth/immune system function/development. It can be insidious and silent.

I was so hesitant to use drugs for Violet I undertreated her disease for 3.5 years post-dx, knowingly so, because she felt so good and looked/looks so great. Her growth and development have been super. But now she has begun to show a symptom, i.e., extreme weakness, that has caused her to be pretty much an invalid. I argued that it must be something else, as she has had active disease for 3.5 years and been living well despite that.

I got an endo consult, a cardio consult, I requested and got tests for any possible causative factor and in the end...it is Crohn's.
Bear in mind this kid is a big healthy appearing muscular ox with red lips and bright clear eyes, who eats like a teamster.

Crohn's can be a mind f**k.

 

[DustyKat]

Fab responses guys!

LittleC, I know the feeling all too well...the second guessing...am I overreacting feelings. I know for me it was a combination of not wanting there to be anything wrong, I know none of us do, but also not wanting to hear the words I dreaded the most.

Go with your gut hun and from what I am reading it is telling you something. It doesn't matter that you can't put your finger on it, you very often can't when it's an instinct. I know you are having the thoughts of not wanting to put your boy through "unnecessary" tests but doing so is never wrong hun. If it all turns out to be nothing then you are no worse off and you can breathe easier, that sort of guilt fades fast, but I know you will carry the guilt for a very, very long time if there is something wrong and you went against your instinct and did nothing.

My daughter went undiagnosed for 18 months and I did try to find answers but to this day I do wonder if there was more I could have done. Go with the scope/tests Mum, believe you me, it is something you will never regret no matter what the outcome.

Dusty. :heart:

 

[Twiggy930]

Hi LittleC,

I am sorry to hear your son is unwell. It is very hard as a parent to deal with them being unwell when the cause is unknown.

My 10 year old son was diagnosed with Crohn's a couple of weeks ago. He had bouts of diarrhea and/or constipation for many months prior. I thought for the longest time that he just didn't want to use public toilets (i.e. the ones at school) and therefore was not going when he needed to which was then leading him to have either constipation or diarrhea. He also complained now and then of just feeling terrible but could not explain any specific symptom. Being the skeptical mom that I am I actually thought this was often a ploy to get out of doing things he didn't want to do (boy do I feel bad about that now!!!). He would even occasionally get a really low grade fever which would disappear overnight. All through this he hardly ever complained of abdominal pain.

In early January things started to get worse and he began losing weight rapidly and had severe abdominal pain. It was at this point that we were seen by a GI clinic and had a scope booked, which lead to the diagnosis. I really wish that I had taken steps sooner to get the scope done. I just couldn't believe that my healthy kid could be so sick.

As for the scope it really was not that bad. The prep day was by far worse than the actual scope and that was mainly because my son could not stand the taste of the prep drink.

Hang in there and definitely have the scope done as it will hopefully give you and the doctors the answers you need to get him on the path to getting better.

 

[LittleC]

I can't get over how many people with minimal symptoms end up with this diagnosis. It's not making me feel better.

but thank you. I appreciate anyone taking the time to think about this and respond. I think about it all the time and its nice not to be alone in that.

 

[imaboveitall]

LittleC, I'm right there with you, it is the most bizarre feeling to have a healthy looking/acting child be diagnosed with chronic illness.
V's healthy appearance/lack of symptoms STILL makes me feel strange about putting her on Humira. I obsess daily on what else may be going on. But I cannot argue with hard data. This is why you must have the diagnostics; biopsies cannot lie, nor pictures from a pillcam.

When I started reading here, just last week, I thought Violet's lack of GI symptoms was RARE, even though her doc says he sees it OFTEN.
Since reading on here, I keep finding cases that look like hers, and some like Dusty's Matt, that are even more WTF inducing.

V's GI said at her last visit that he had two teens in the last few months come to him "too late to treat or prevent their strictures" and they both ended up with bowel surgery. One was a cheerleader who was feeling fine, no appetite loss or weight loss, ended up in ER needing emergency sx.

 

[polly13]

Hi

Do the scopes they will help you find out what is wrong. When Lucy had her scopes and we were dreading it -it wasn't too bad at all. The worst think was the prep she had to take before hand, and we put that in her juice and she took it ok. She was allowed jelly and clear liquid the day before and it kept her going. We went to the hospital for 7.00am, she was in theatre by 7.30 out by 8.30 and we were out of the hospital by 10.30 having spoken at length to the GI. She was fine afterwards. I hope you get some answers soon, because in a strange way once you know what it is wrong, you can move on, start a treament plan and while you never stop worrying, the painfull anxiety around what could be wrong goes away.