How to most effectively "push back" against the "functional" or IBS diagnosis?

[mom2277]

We don't have a lot of good options for GI because my DD8 has Cover Kids, which limits her to in-state providers. Her current GI is at the best teaching hospital in the state.

On her initial visit, the GI formulated a game plan: scope for EoE, Celiac, and Crohns, with a contingent plan of labeling her constant nausea as "functional" or IBS with the only treatment being a pain psychologist.

Her symptoms have lasted 6 months. Chiefly, she has 24/7 nausea. She also has headaches, joint pain, and eye pain. She developed abdominal pain, though it's not a chief symptom. Fatigue and constipation (only discovered by x-ray and despite a pretty high fiber diet). She has double-vision and blurry vision. (An ophthalmologist thought the double-vision was related to her pre-existing strabismus. She feels tired and sick, so her eyes don't focus as well.) She has asthma, which has worsened, as well as many severe food allergies. She also has had a slew of muscular-skeletal injuries/pains: low back (sacroiliac joint pain) constantly and unvarying with anything; tendonitis in her Achilles; knee joints; hamstrings.

The GI's notes indicate he's prepared to call it functional if her scopes are clean because she lacks the red flags: vomiting (only 1x); no fevers; no diarrhea; no bloody stools; no joint swelling; no rashes.

If he dismisses her, then we don't have a lot of good options. Should I push back against the "functional" diagnosis and ask him to investigate the nausea further? If so, what tests do I ask for or diagnoses do I ask him to consider? Also, how can I most effectively do so? WHEN, at what time, should I push back? Do I do it the day of the scope, telling him then I'm uncomfortable stopping her work up if the scopes are clean? Do I wait until the nurse (not him) calls with scope results? Do I wait six months or so and then reschedule an appointment?

I would love insights and suggestions on how people have pushed back against a functional dx (assuming it's advisable here) and preserved a good, working relationship with their GI.

Thank you so, so much! I've learned so much from reading the experiences everyone has shared here.

 

[Maya142]

Could you get a referral to a rheumatologist? Even if her joints aren't swollen, no child should have joint pain. Incidentally, sacroiliac joint pain was one of my daughter's first symptoms of arthritis.
I think there are a number of families here that had to go to rheumatologists to continue trying to pinpoint a rheumatologist (DanceMom comes to mind).
I would wait for the scope results (the biopsies) before telling there dr anything. My daughter's scopes did not show anything much, some redness and that's it I think, but her biopsies showed inflammation and granulomas.
Good luck with the scopes!

 

[Mehita]

What labs has she had?

 

[mom2277]

Thank you so much, Mehita. Excellent advice, I think. Her labs all have been normal, including ANA and R. Differential, with the exception of CRP, which was about 40% above the upper limit of normal. Her allergist very kindly called me when I faxed him the results with "FYI" on it to explain that the CRP measured very short term inflammation, and with a normal SED rate, it wasn't alarming, though he said it probably should be repeated in time.

I greatly appreciate the thoughts about the rheumatologist. Her (former) ped. thought a rheumatologist referral was ridiculous, but gave it to me anyway when I insisted. Her PT initiated that she wanted my daughter to see a rheumatologist because of the sacroiliac pain being unvarying and because of the innumerable joints affected. We have the referral. I pushed the appointment out until after the scopes and until after flu season. The teaching hospital where the rheum. is located has had an above-average number of lethal flu cases. My DD8 cannot vaccinate against flu because of her asthma and anaphylaxis to traces of eggs.

It's very interesting that you mention food intolerances. I spoke with someone who offered that she, too, developed lots of joint pain. She tested negative for Celiac, but by eliminating wheat, her joint pain ended. My daughter's symptoms started when I pushed dairy products (esp kefir and yogurt for their probiotic effect). Their elimination of a little over 2 1/2 weeks had no effect. This woman said she didn't get results in that time. She had to eliminate for longer. I also wonder if my daughter's symptoms may be more than milk.

Thank you so much! I appreciate your suggestions and wisdom!

 

[DanceMom]

Yep, get a Rheumatologist! Perhaps her issue is not IBD, but instead some other autoimmune disorder. Our GI and Rheumo work very closely together and have referred to other specialists (Neuro, Ophthalmology, Cardio) as necessary.

Most importantly, be patient. We've been at this game for 5 years, 14 months of that at the hospital we are currently with. Sometimes an accurate diagnosis is nearly impossible. As our GI tells me, "Some kids do not read the textbooks." I think mine spit on the textbook! lol

 

[xmdmom]

Are they doing upper and lower scopes?

 

[my little penguin]

We had the same clean scope visually at dx .
Biopsies also showed granulomas and chronic inflammation.
Our Gi told us possible functional disorder or allergic intolerance but was willing to work with us to get to the bottom of it ( not pysch).

DS aslo sees a Rheumo who helps a lot since DS does not have classic bloody diarrhea crohn's.

I would wait until the scope is finished and the biopsies are back and even then some before pushing with the Gi.
In the mean time it wouldn't hurt to setup a Rheumo appt.

Also given her atopic nature
Look into mastocystic disorders ( mast cell activation diseases or mastocystic enteritis )
The biposy slides would need to be stained for this though with a special stain.
An allergist ( dr castell at bringham women's hospital ) specializes in kids with this
http://www.jhoonline.org/content/4/1/10
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/
http://www.hindawi.com/journals/grp/2012/950582/


http://www.karger.com/Article/FullText/328760


http://m.gut.bmj.com/content/31/7/791.full.pdf



The best thing to do is breathe don't assume the worst
Wait fir the scope and biopsies

Then look fir peer reviewed papers not just websites .
Remember you know you kid well and docs know diseases well
Even if they are the best in their field you still need to be able to communicate effectively with your child s doctor .
Also state insurance will let you go out of state but I know it takes a lot of paperwork etc...
You can also have a paper review if her records out of state ( just no visit )

Breathe until the scope
Easier said than done

 

[CrohnsKidMom]

Your little girl has a lot going on, poor thing, so I would hope the scopes/biopsies would shed some light on what is causing her symptoms. My son has CD, but never vomited from it, no diarrhea, no bloody stools (except blood on wiping from large stools-constipation), and no joint swelling. He did have daily fevers and minor skin rashes, as you mention as red flags. Good luck, I hope you get some solid answers with the scope.

 

[mom2277]

Thank you so much for the sound advice, DanceMom. We are having both lower and upper scopes. I think this is the hardest part: I know (from reading here) that we may not have answers. If she has EoE, we may even have a false negative. I appreciate what you said about being patient and realizing that a diagnosis may take time. I'm pained that my DD has been sick 6 months, undiagnosed, though I'm painfully aware that is a trifle compared to many families here. I think you're so fortunate to have a GI who embraces the uncertainty of a diagnosis, instead of simply dismissing your child when a diagnosis isn't obvious. We are enlisting a psychologist who works with kids with GI issues to help in either event.

I appreciate the encouragement to see a rheum. Though her allergist also echoed that with normal ANA, R. Diff., and SED labs, rheum. disease was out, I was concerned that it might be more nuanced than that. It seems some rheum. diseases don't necessarily have pos. serology. I wanted a rheum. to make that call, not a generalist, because we're dealing with a CHILD, which I know is exactly how the parents here feel and live with every day. The rheum. appt. is actually with someone who dual specializes in food allergies and rheum. Hopefully, even if my DD doesn't have a rheum. disease, perhaps she has enough experience with kids presenting with these symptoms that she can at least point us in the right direction or offer dx. possibilities.

 

[DanceMom]

Initially my daughter's labs revealed low albumin and high eosinophils. No one got too excited over that and her first set of scopes were completely clear. Yet her growth was poor and she was labelled FTT. A year later labs were normal but scopes showed mild gastritis. Still considered FTT but our GI didn't offer any treatment plans or hope. We found a new GI.

Third set of scopes showed some non-specific inflammation in small and large intestine but labs remained normal (including fecal calprotectin). She was given a Crohn's diagnosis (though we were told it was iffy) and started on medication. Fourth set of scopes were completely normal. Medication was stopped. Now we have abnormal labs again. Calprotectin is elevated, WBC are low, Globulin is low, IgG is low....CRP and SED are still normal. For my daughter it took 8 years of symptoms to get abnormal labs. She does have all of the red flags you mentioned except joint swelling. Sometimes even those red flags take time to show. Bloody stool started a little over a year ago, fevers within the last 6 months (but have now stopped). These autoimmune disorders are tricky. Hang in there!

 

[SupportiveMom]

Thought I would share my opinion to mix in with everyone's good sound advise.

Scope is the best way both from the rectum & from the mouth. It still does miss a big section though. I am glad you are getting that done. I have't tried it, but a Pill Cam has shown promise for many. An MRE is a good choice too along with the scopes which will show better the places the scope can not.

Allergies could also be a trigger of an additional issue aggravating the crohns or whatever is going on. We had hard symptoms fast and long, so there was no questions on our diagnosis, but my dd has crohns literally from gum to bum. I hope you find answers soon & know all of us parents here are here to support. Good luck.

 

[crohnsinct]

You have been given great advice. I just also wanted to say that we all tend to go to the best of the best...teaching hospital...lots of cases etc. However, don't be afraid to go to the lesser known GI's practicing in other hospitals. There are gems everywhere and you may find a GI, Rheumy etc at one of the lesser known hospitals who you click with or who is passionate about finding a dx for your daughter and getting her to feel better. I live very close to Boston and people are surprised to hear that I don't go there. I go to a smaller hospital in my state and the director of the center there happens to have gotten all his training at Boston and we love him.

Good luck. I hope the scopes and biopsies give you some good solid answers and if not that the GI has some ideas of where else to turn.

 

[DustyKat]

You have been given fab advice mum so I will just add my thoughts to the IBS v’s IBS side of things:

*24/7 nausea - Can be present with IBS but I doubt it would be 24/. Can be a symptom of IBD.
*Headaches - These can also be present with both IBS and IBD.
*Joint pain - Away from the back these are not symptomatic of IBS. Back/pelvic pain can exist but not pain affecting the larger joints. Large joint pain is a common EIM of IBD and in the pelvic region the SI joint is a common region that is affected.
*Eye pain - This is not a symptom of IBS but is of IBD.
*Fatigue and constipation - Can be symptoms of both IBS and IBD.

The GI's notes indicate he's prepared to call it functional if her scopes are clean because she lacks the red flags:

*Vomiting (only 1x) - Not everyone with IBD vomits.
*No fevers - Inflammation doesn’t necessarily equate to fever if no infection is present.
*No diarrhoea - Loads of people with IBD don’t have diarrhoea.
*No bloody stools - Again, loads of people don’t have obvious bleeding, especially if disease is located in the small bowel. My two did not have diarrhoea or bloody stools.
*No joint swelling - My daughter had knee pain and they didn’t swell. I think you will find lots of folk here that have joint pain but the joint doesn’t swell.
*No rashes - My kids have never suffered with rashes.

I personally think you can raise the topic of further investigation if and when the scopes are clear. My reasons are:

1. There are far too many existing issues to wave it away as IBS, regardless of those that overlap.
2. Far too many people spend inordinate amounts of time in limbo land because certain ‘red flags’ aren’t present. When in actual fact it is not that uncommon not to have the said red flags.
3. It is far from rare that the intestinal symptoms/evidence of IBD don’t show themselves for months or even years.
Because of this it is important to continue to observe for changes or progression of symptoms if the scopes are clear. Do you keep a diary? If not I would start doing so after the scopes, if needed. Have a look at these suggestions…

http://www.crohnsforum.com/wiki/Diary-Inclusions

Good luck! :ghug:

Dusty. xxx

 

[dannysmom]

Hi Mom - You got great advice - blood tests, rheumi, pillcam, MRE - are all areas to explore. My son was asked to try some IBS/functional medications to see if they helped him, but they did not. Good luck!

 

[Catherine]

This is our experience.

Sarah has Crohn's she did not response to FODMAP diet.

I have IBS, I have nausea 24 hour a day if I don't severe reduce my intake of gluten and lactose. My faecal calprotectin is alway negative.

If the scopes are clear maybe a trial of FODMAP but you do need some imaging of the small bowel.

 

[mom2277]

I'm so, so touched by the huge outpouring of astute advice and insights and experiences shared. Thank you so, so much!

I was prepared to "attack" BEFORE the scopes results with the plan to schedule more if negative, so the suggestion of calmer, less emotionally involved minds to wait until the scope results before raising the issue of additional tests is especially appreciated. I'm too close, I feel, to always have a good handle on handling the politics of my daughter's care, though I'm painfully aware of the need to do so.

I especially appreciate your detailed table, DustyCat, of how her symptoms align with IBS and IBD. Thank you! I appreciate your validation that she simply has too many things, even if she lacks the red flags, to simply dismiss her.

If the scopes are negative, I, too, would like to have her small bowel tested. It's concerning that the constant nausea can be consistent with IBD of parts of the small bowel.

Thank you, too, for the reminder that sometimes practitioners NOT affiliated with teaching hospitals may be willing to really "stick with" a patient and persist until they do have an answer. Indeed, we went to a local kids GI clinic here to see a psychologist who works with kids with GI issues. One of the GIs there has a reputation for very aggressive testing. I initially eschewed him because, with my daughter's asthma, I was very concerned that she only receive tests she absolutely needed. If we're in a position with this teaching hospital where they refuse to do anything more after the colonoscopy and endoscopy, even though her nausea could be explained by IBD of the small bowel, then I'm considering whether we should see this local peds GI. I don't know if it'll be sticky because I initially had her treated elsewhere.

Again, I cannot express my appreciation enough or adequately. I don't have to tell the parents here how painful it is to see your child ill or how painful and wretching it is not to know why your child is ill, so you can hopefully start to help him or her. You've all helped immensely. I so appreciate you taking the time to share your experiences and insights. Your support has made this onerous experience much more bearable. Thank you!