Searching for a diagnosis: this time we're not giving up

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Momto2girls

Momto2girls

Joined
May 18, 2012
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313
My 5. 5 year old daughter has been sick/undiagnosed for over 2.5 years now. It started with urology and then nephrology and we moved on to GI oh and of course opthalmology and rheumatology, and a couple of new pediatricians along the way. :rof: :ybatty: :ybatty:

To be honest, all of the "ologies" started to get to me :eek2: and we "learned to live with" the daily stomach aches and constipation and picky eating and borderline asthma and eczema flares here and there and just made do. I mean, she's not losing weight, she hasn't had blood in her stools for several months, and she's generally a happy kid (except when she isn't), and she started all day kindergarten this year and who wants to be "sick" all the time?

So believe it or not, it has now been 9 months since our last round of sulfasalazine, and our last labwork and our last GI visit. And well, it is getting unlivable again.

I mean a child shouldn't have abdominal pain every single time they eat, right? Even if they aren't losing weight or having blood or vomitting -- daily pain still isn't normal, right? And her major meltdowns over tiny things b/c her stomach is always hurting? And she curls up in the fetal position after every meal? I mean, I am her mom and I'm not supposed to let that happen, right?

So, here I am. Just made a new GI appointment and couldn't get in until Jan. 30. And left a message for this nurse about a fecal calprotectin (though last march the fecal lactoferrin was the only choice). And so at least it is a starting place?

A lot of people have talked about the Mayo Clinic lately -- which is actually driving distance for us. I wonder if it would be worth a try?

I am hope to suggestions! I am awful at this and I need to not give up this time!
 
Good luck! It took us a year and a half to get my son diagnosed so I can understand your frustration. For my daughter it took 4 years of fighting. Might be worth trying the mayo as they seem to be good.
 
I'm so sorry she's feeling so awful again :( I hope they can get you in a lot sooner than your appt! That's ridiculous! If the Mayo clinic is close enough, I would prob try either calling or going in to emerg the next time she's feeling bad.
 
Good news! The nurse called back and said the nurse practitioner could see us tomorrow morning at 8 AM. I have heard good things about this particular nurse practitioner, so that should be good.
 
That is great news and if you are not happy I would think about Mayo clininc. If we were nearby I would definitely be taking my daughter there.
 
I would still call mayo .
Second set of eyes is always helpful in a tricky case.
That way the local GI can handle it but mayo can turn things around quickly for a dx.
 
Has she been tested for Celiac disease? She sounds exactly like my son before he was diagnosed! Unfortunately, we got the double whammy of Celiac and Crohn's. Good luck tomorrow!
 
Hi

I'm so sorry to hear she is hurting so badly. My son has many of those same symptoms and I know he has just given up on telling us it hurts sometimes because he knows we can't do anything about it, anything to help him, and that is a terrible feeling as a parent.

We're new here on the forums, but we've been working with Mayo for just about a month now and they made more progress in our first 5 day visit than 9 different -ologists over the first 3 years of my son's life. Granted, they had that history of failures to build on, but I just wanted to say it has been an amazing experience. My husband was skeptical at first but he is now a believer.

Now, Mayo has not yet solved all of our medical mysteries and I don't know that they will, but they did turn up 2 very key findings through testing and are pushing forward where others literally gave up, "well, something is wrong but we don't know what it is." So even if we don't get our diagnosis (should be coming this week), then we have still made progress. Part of our issues are that we may be in that gray area of unmapped genetic diseases.

Best of luck tomorrow morning, I hope you find some relief for your Dd, and if its in your means, I do suggest you work on going to Mayo.
 
Mehta, she has been testes three times for celiac and they have all been negative? And the scope biopsies were negative, too?

Emilie,,I saw your other posting -- big hugs to you. It is so hard when they are so little!

So I found this article about FAC (focal active colitis) which I think is the same as focal cryptitis which is what Gracie had in her scope. I always asked if they thought it was a pre-cursor to IBD and they always said they didn't know. This article say up to 26% of kids with this do end up with a diagnosis of IBD. I was kind of shocked to see that.

http://www.miracalifesciences.com/p...does-this-histologic-pattern-mean-clinically/
 
Here is something else kind of interesting. Over the years people here have suggested and we've wondered about MAST cell causes like mastocytosis or ME. I was recently tested and had an elevated tryptase so maybe if it is genetic she could too? So here is an article about how much the two things look alike?
http://www.ncbi.nlm.nih.gov/pubmed/17063092
 
We thought of ME for Grace. Something to think about.

I guess I got to where you were and just decided that no matter what toes I had to step on I was going to get answers for Grace.
When it comes down to it, no matter the dx, she needs answers.

HUGS, Did you get the pic of the IV tower with the your design on it? Or am I thinking of someone else?
 
So I think it was a good visit. She wants to do the fecal lactoferrin -- they don't do the calprotectin. And they are also doing some other fecal test to see if the h. pylori has gotten worse as she thinks she could be so of peptic or something, like maybe an ulcer? I am not sure, but her pain is sometimes a little higher which could point to the stomach. And she did have gastritis/h/ pylori in her scope they never treated. (She seemed surprised they never treated it).

Then, she wants to try her on Levsin -- a drug basically for IBS -- because they think with her inflammation, etc. her gut has become very sensitive to pain. So this is like an anti-spasmatic drug to calm her gut so that it can recover from the pain.

After that she does want to try an anti-acid med -- but we're going to do one thing at a time so we know what's working and what's not.

Obviously, if either fecal test comes back positive, then that could change the game plan. But, in the meantime I think this is a good next step.
 
Ok
DS tried all the "Ibs" meds for the same reason-
Over sensitive pain due to inflammation blah blah blah .
Antispasmodics stop/ slow the contractions of the gut .

Levsin
Bentyl
Elavil
Amyntripyline
Periactin

Only when DS was on the right Ibd meds did the mystery stomach pain stop.
Ibd meds only helped ( levsin) for brief severe spasms ( once in a great while )not daily
stuff

Gastris can be caused by crohn's .

If they are not willing to try and figure it out and only going the simple Ibs route ...
That is concerning

Have you called mayo since that will take a while to get in?
 
Yes that is the exact same blah blah blah story they gave us!! Ugh! But don't you think if something were going on it would come up in the lactoferrin test? I guess we'll have to wait and see.
 
my little penguin said:
Ok
DS tried all the "Ibs" meds for the same reason-
Over sensitive pain due to inflammation blah blah blah .
Antispasmodics stop/ slow the contractions of the gut .

Levsin
Bentyl
Elavil
Amyntripyline
Periactin

Only when DS was on the right Ibd meds did the mystery stomach pain stop.
Ibd meds only helped ( levsin) for brief severe spasms ( once in a great while )not daily
stuff

Gastris can be caused by crohn's .

If they are not willing to try and figure it out and only going the simple Ibs route ...
That is concerning

Have you called mayo since that will take a while to get in?
Click to expand...

This is interesting. We have not (yet) been led to try-on an IBS diagnosis, but we are using Periactin for headaches and it worked. However, it did not touch the stomach/chest/lower abdom. pains. Omperazole did help with chest pain and improved eating/willingness to eat significantly for us.

It sounds like your meeting was a mixed bag. I'll cross my fingers for you that the fecal lactoferrin test brings back a sign for them to take seriously and that you quickly find some drugs that will bring her relief.
Mayo ordered the fecal calprotectin for us and the results have made people sit up and take notice. I know I read elsewhere on this forum that people have had fecal cal. done privately and paid out of pocket when they thought it might be an important/significant finding.
 
Momto2girls; Sorry your little one is suffering so. Her symptoms sound similar to my son's at dx. He has always suffered from constipation, but was getting a lot of pain around his belly button, which increased after eating. There was a host of other symptoms too, however. We have been lucky to get a quick dx, but then again, in this area we have the highest number of people with CD in the world, so maybe in a sick way that gives us the edge. I know yours is a common story though. Hang in there. I do know of people who have sent their medical files from here to the mayo clinic in Boston for 2nd opinions for various conditions. I hope you have good luck and a clear dx soon.
 
Levsin was the first IBS drug we tried for my daughter. It did absolutely nothing. Not even close. I may as well have been giving her tic tacs. There are other medications though and if Levsin doesn't work maybe some of the others will. Our GI seems to like Neurontin (it did nothing for my daughter and taking it 3x a day was a pain) and another GI in our clinic prefers Bentyl (it may have helped the first 2-3 times we used it). Periactin did help my daughter gain weight but it didn't make her feel any better. I tend to think if the IBS drugs don't help then you don't have IBS. But I'm no doctor.....
 
SO interesting that you all have all had Levsin or something similar at some point. I am totally unfamiliar with it. And honestly, I am just hoping it works. Because if it does then we won't have to worry about IBD and we might just dodge the bullet, right!?

Also, I am interested to hear so many of your children have had similar symptoms -- I keep thinking hers are mild compared to everyone else. Now I can't even do the lactoferrin until she poops and of course she hasn't sine I got the supplies! Shocker!

And of course the medicine was supposed to be a melt under the tongue and it wasn't! So need to get that fixed today. Duuuude.
 
Yep, I think most of us have heard the IBS thing at one time or another. And our GI felt that A had IBS on top of IBD (basically because her symptoms seemed so much worse than her test results).

I really hope the Levsin works for your daughter. If so, what an easy fix!
 
Well the Levsin is maybe helping? But not a ton...but maybe a little? And I finally got a stool sample and dropped off the h pylori and lactoferrin at the hospital today. Whew! So now to hurry up and wait for results.
 
Well, the h. pylori is negative. So that is great. I am glad to have the ruled out. The lactoferrin isn't in yet. So we will wait and see. I know from reading these forums that it is common for kids to have normal bloodwork and still have Crohn's, but I am thinking kids generally do not have a normal lactoferrin or calprotectin and still end up with Crohn's, correct? So, if that comes back negative then I think we have to move on to looking at something else.

Her tummy might be a bit better? It is hard to know for sure. Over the weekend we traveled in the car to visit my grandma and her car sickness was SO much worse than usual -- threw up several times, just felt awful, etc. That is always how my brother was as a child -- and he has Crohn's. Wondering if other Crohn's kids are that way, too?
 
That's great news but also tough. I'm not sure I'm the best source since we also don't have a confirmed diagnosis but here goes. We have abnormal calprotectin but normal blood work (CRP, ESR, and most everything else). It was the abnormal fecal cal. that pointed to IBD. Given what you describe, I think the possibility for Crohn's would be slim because those tests, as I understand them, are supposed to highlight the presence of inflammation in the GI tract. So, if your Dd is experiencing symptoms and the inflammation is there, then those numbers should be off. Then again, so should the bloodwork but those are less specific indicators of inflammation somewhere in the body. There is a genetic element to CD so I wouldn't let them dismiss it quickly despite the mixed results.
Our f. cal is abnormal and the scan shows inflammation but the bloodwork is normal and for us Crohn's is on the table but now waaaay down the current list because our Drs. see the normal bloodwork as being unsupportive of an IBD diagnosis. Then again, I don't think the other lead prospects fit all his symptoms quite as well.

I'm sorry but I don't recall if you mentioned where they had tested for or considered EE/EoE or else other things like food protein intolerance?
 
Yes, when they scoped they looked for eosinophils and didn't find any. We haven't gotten the neg. on the fecal lactoferrin just yet, but I am preparing for if we do. I'm pretty much assuming we will. The doctors have never mentioned food protein intol. She does have IgE allergies. But I thought the FPI was more for infants?
 
Hi Emilie,
It's true the FC stool test is a good indicator but that's not perfect in all cases.
My DD GI said as much. He said some might fluctuate by 100's when some might fluctuate by 10's.
Also IBD in children seems to be a different ballgame all together. Our second opinion from the mayo clinic said some kids like my girl get the EIM's first and then after some time the crohn's part flares up.

Also I thinks she's a little old for FPIES? I could be wrong. I have to deal with the EGID's side of things more.
 
DS had normal fecal cal more than a few times but biopsies still showed inflammation on scopes taken during the same time ;)
Some kids don't get the crohn's memo
 
my little penguin said:
Some kids don't get the crohn's memo
Click to expand...
:rof:

We had a GI appt today and were discussing the different tests... CRP, Fecal Cal, etc trying to determine if DS had one or two that seem to be reliable indicators for him. Our GI said the only predictable thing is that it's all unpredictable, especially in kids.
 
Farmwife said:
Hi Emilie,
It's true the FC stool test is a good indicator but that's not perfect in all cases.
My DD GI said as much. He said some might fluctuate by 100's when some might fluctuate by 10's.
Also IBD in children seems to be a different ballgame all together. Our second opinion from the mayo clinic said some kids like my girl get the EIM's first and then after some time the crohn's part flares up.

Also I thinks she's a little old for FPIES? I could be wrong. I have to deal with the EGID's side of things more.
Click to expand...

Thanks for the information. I am still learning.
You can have FPI without it being FPIES. Its a little bit like EGID without the eosinophilles being present, at least in terms of symptoms/presentation....or so I have been told. Its a diagnosis of exclusion.
 
The annoying thing is FC at least gives you a number so you can be normal-ish. With lactoferrin it is pos or neg and that's the only test my GI will run. And for some reason our GI didn't get the memo about kids being unpredictable on tests. She seems to think it is pretty black and white.

The other thing they love to tell me is that she is still gaining weight in which case it can't be Crohn's.

And at our most recent appointment she gave me the "we've done extensive testing..." And then they are thinking "and woman you are crazy. Leave us alone and be grateful to have a healthy kid and go home."
 
So Gracie has had one little/medium sore under her tongue for a couple of weeks, but I didn't want to get alarmed as kids do get these things. But, this morning when she was eating an apple I noticed she's got two little sores on her gum right above her tooth. What is this? Should I just start with the dentist? Call the ped? Could it be related?

Still no lactoferrin results.
 
Yes, little ulcers or sores like that can happen with a Crohn's flare. When DS gets them it's a big indication that something's up.
 
I just asked our GI this question on Tuesday because I saw a few in Ds' mouth. They said common with Crohn's and Celiac.
 
So, lactoferrin normal.

Not sure what to think -- thrilled of course that we don't have an obvious big problem, but really stuck now b/c I promised I wouldn't give up and I feel like I am at a standstill now. The nurse asked if I wanted her to ask the GI about moving forward with bloodwork, but I said I don't. I am so tired of poking her for normal test results. And with normal lactoferrin don't you think it is unlikely that anything else would come back?

Maybe we really are barking up the wrong tree? Is it possible that something could hurt your tummy that isn't celiac or crohn's or "functional gut"??? I mean, really, there has to be something else, because it is NOT NOTHING and it is NOT functional -- at all!!
 
My son had mouth ulcers at the time of his dx. We found that if he ate something that bothered the ulcers in his mouth, the same food would give him increased abdominal pain. Seemed to be a bit of a connection, which I guess makes sense.
 
DS had normal fecal and blood results .

I would ask the Gi to explain why there was inflammation present in here biopsies.
There must be an explanation since functional gut does not create inflammation in the gut.
Why she continues to have symptoms and what was the Gi going to do to fix it.


The reality is she needs a second opinion from a gi whose has a fresh set of eyes
Mayo is close to you as are a few other but she needs a major center .

Sometimes after a certain point of normal ....
A second set of eyes are needed to move forward .


We had good luck at cchmc .
 
We had normal bloods and stool tests too.....of course we also don't have a definite IBD diagnosis either. But our GI promised us from day 1 that he wouldn't stop until he had a definite diagnosis and my daughter felt better and I'm holding him to that.
 
My son has normal CRP and fecal calprotectin but still has chronic severe abdominal pain. We have been given the IBS in addition to Crohn's label. It is a hard dual diagnosis to fully buy into. I don't have any magic answers but I would look into the FODMAP diet while GI figures out what they are going to do about the situation. I tried it with my son about 18 months ago and had no luck but I don't think I was that strict with it. I am now trying the diet again with him and we are following it to the letter. So far he has been feeling MUCH better while on this diet. It might be worth a try. At the very least trying this diet has given me, as a mother, a sense of control over this disease (IBD and/or IBS). And I think it has given my son a sense of control over it all too. Aside from missing wheat my son doesn't mind it too much.

I hope you find some answers soon. I know the despair a parent feels when docs seem out of ideas. And I too have been made to feel like a CRAZY mom for pushing them to look harder for the cause of my son's pain.
 
Thanks so much everyone. I don't mind pushing the doctors -- I really don't. What I don't want to do is unnecessarily push my daughter. My little sweet 5 year old who will have to go through all of these tests and scopes and bloodwork and doctor's offices and what if I'm wrong? She's fine and I put her through all of that?!

And secondarily, the money. We have insurance and yet we are still paying off the scopes from 1.5 years ago. Without really good indication that we need to it is hard to justify doing all of this out of network, which is even more expensive. And what if I'm wrong? We're in debt and we still have gotten nowhere.

This would all be close to $10,000 out of pocket for us, and just to have yet another doc say "Shea's fine." ????

I don't know.
 
I would push for a FC stool test. I know your doc doesn't do those but Grace's old GP didn't either and his nurse found the code (insurance) and order one for her. It can be done.


Hugs, how is she today?
 
They don't do FC at Children's Mercy at all. Gah I can't believe how bad that GI dept. is. If we went somewhere it'd have to be mayo as we could drive. I wonder if they could just do a record review. I need to look it up.
 
How frustrating. I know how you feel. When Jae was little we did the same and kept getting negative results and so I gave up. I kept myself in denial for years and we just jumped through all kinds of hoops to get her to eat, but it got really bad and finally when she didn't go into puberty I had to admit that it wasn't nothing like they told me when she was 2... Doesn't your insurance have a cap? Also could you talk to your hospital about "charity care" discounts for people who can't afford the services?
 
So she's still getting worse...she has woken up thirsty the past couple of nights, and has been thirtstier overall. She's had a few potty accidents which seems to happen when she feels bad -- I guess due to constipation? She's got a bad "corner" of her mouth now, too. And he mouth sores from lately seem to have been blisters as in some areas the skin is now peeling on her gums? Also, her eczema is flaring and she s's got some really sore spots on her bum.

Emotionally she's a wreck, she's been in time out at school which is very unusual for her. She wouldn't stay yesterday for Girl Scouts after school and then later had a huge fit about it. When I asked her if she went poopie at school she says yes, she usually goes at lunch as that is when her tummy hurts. So abdominal pain still seems to go along with meals.

With a normal lactoferrin and with her allergies, and with the eczema involvement, what about back to something mast cell related? Is that something worth looking into? I just am this close to taking her to some sort of naturopath or something as these regular docs are not helping. Or maybe we just move onto mayo?
 
I'm sorry that she isn't getting better. It is so hard to watch our kids suffer. We spent a few years trying to get somewhere with all the local Drs. and made more progress in a week at Mayo than in all that time. I only wish we had gone sooner! We didn't leave with a diagnosis, but that is because we had to leave. We should have planned ahead to stay longer.

We left with loads more information about his health, some real leads on the causes, and a treatment plan to help figure things out. We aren't seeing major relief of symptoms, yet, but that is teaching us something too. Mayo isn't the answer for everyone. Cincinnati may a better place for you, but I would encourage you to seek a second, third, fourth opinions.
 
I keep going back to the Mayo idea because it is driveable in a day which makes it more doable for us financially. So how long do you think we need there? My hubby and I both work so we have a limited amount of time off. We also both work for magazines which means constant deadlines, too, so no way to be gone for extended amounts of time.

I am not sure her symptoms are "severe" enough to warrant the Mayo -- but I am just tired of going round in circles and having docs tell me how common abdominal pain is in childhood -- ya know?
 
Also, what's the children's hospital in Denver? That's not quite as close as Mayo but still a day's drive. And I know they are really good with allergies, too.
 
My son suffered terribly with mouth ulcers before diagnosis. He also had sores in the corners of his mouth - angular chelitis - an oral manifestation of IBD as it turns out although we were told many times by various GPs that they were dry skin or cold sores!
 
I know, and my brother who has Crohn's had the sores in the corners of his mouth horribly for years! He was CONSTANTLY putting vasaline or chapstick on them and they never got better and I feel just terrible for him that no one ever got to the bottom of it. Ya know? I just don't want that to happen to Gracie.
 
We suspected coeliac initially and so my son went gluten-free. This really helped with the ulcers and mouth sores but he was diagnosed with Crohn's after scopes. Apologies if I've missed this but have ferritin and B12 levels been checked?
 
So she's been tested for Celiac 3 times and it was negative. The GI was convinced it was Celiac -- and "knocked sideways" when they found inflammation on scopes. We haven't done bloodwork in 9 months -- and when we did I'm not even sure they checked these things? In fact I'm not even sure what ferritin checks for?
 
Ferritin measures the amount of iron stored in the body. It wasn't until I finally got our GP to test this that we started to get taken seriously as they then realised that my son was very anaemic. CRP was fine at that point though.
 
Have you seen a Rheumatologist/Immunologist? We started seeing one a few months ago and have found him to be very helpful. In fact, he's now "driving our ship" as the GI puts it. I wish we'd been referred a long time ago actually.
 
Second the Rheumo
ours has helped DS a lot-
GI is still steering the ship but rheumo is up there too.

I think for any where you have to plan one to two weeks off at least even Denver.
WE have done two day trips for Cincy but Ds was already dx and freshly scoped at the time so only doc appts needed no tests or scans or scopes.

I understand time off and two working parents but sick kids are sick kids ....
and you can save time away from work by getting to the bottom of it to fix it before it becomes a major issue requiring hospital stay.

not saying that is the case but things to think about....


You do the best you can - call and ask questions at Mayo and National Jewish National Jewish has day programs so maybe a few shorter mini trips ...
but
the only way to know would be to call and see what is involved since each case for kids is different kwim.

good luck
 
So the GI did send us to the rheumie who said she was fine. Buh-bye. I'm pretty sure they were only talking about the possibility of arthritis, though. Yeah more than a week at a time just isn't possible. I'll see what I can find out. Thanks!!
 
One thing to consider
We would treat those visits as our vacation trip for the year.
So if you take a week off for a normal vacation you do this instead with evening to the museum , zoo etc.. Since most childrens hospital have lots of free tickets to all the local fun places ...
 
Momto2girls,
I would definitely consider Mayo clinic. If we still lived in St. Louis that is where we would have gone next. I think you need to plan for a week but make sure they get you in with the GI team first. I think that was the issue Farmwife had is they saw the GI last and then they had to leave and couldn't do the testing she wanted. If they had seen her first I think it would have been better. Also make sure they have all the records a dr review them prior so no time is wasted doing things that have already been done. Finally about the fecal calprotectin would it be possible to ask her regular pediatrician to write a prescription to have it done and then you just take it to the lab (we use quest) they give you the cup to take home and then you bring it back to them. I have two other kids with stomach issues and our regular pediatrician sent FC's on them ands aid the. If they were elevated she would send them to see the GI doc. That way we did not have to waste a visit.
 
All great ideas, thanks! I do think our insurance does use quest and I do like our new ped. I think I'll ask her to order that. She is so much easier to deal with than GI which is a total nightmare. I keep thinking if we could just get GZi here to take us seriously we wouldn't have to travel. I think all we need is a test to come back that shows something!?
 
So the nurse at GI called to follow up and we're giving up on the levsin -- isn't helping and I do think it is constipating. Now they want to try an acid reducer, and I can't remember what they said she was prescribing, but I am going to pick it up this afternoon.

And they said to check with her pediatrician on her mouth sores -- so I am thinking about doing that so that they are noted somewhere -- and who knows maybe her doc will actually have something to say about them? Not sure.
 

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