Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » Searching for a diagnosis: this time we're not giving up


 
11-13-2013, 12:40 PM   #1
Momto2girls
Senior Member
 
Momto2girls's Avatar
 
Join Date: May 2012
Location: Kansas
Searching for a diagnosis: this time we're not giving up

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.

To be honest, all of the "ologies" started to get to me 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!
__________________
Supermom to 2 girls: Little Girl (4) & Big Girl (7)

Little Girl: Undiagnosed (scope 4/12: non-specific inflammation in TI & colon, gastritis & h. pylori in stomach), Asthma, Food Allergies
Sulfasalazine, Miralax, Folic Acid, Zyrtec, inhalers
11-13-2013, 01:33 PM   #2
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
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.
11-13-2013, 01:39 PM   #3
Devynnsmom
Forum Monitor
 
Devynnsmom's Avatar
 
Join Date: Jan 2012
Location: Toronto, Ontario
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.
__________________
Samantha, AKA Devynn's mom


Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
11-13-2013, 02:02 PM   #4
Momto2girls
Senior Member
 
Momto2girls's Avatar
 
Join Date: May 2012
Location: Kansas
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.
11-13-2013, 02:18 PM   #5
Devynnsmom
Forum Monitor
 
Devynnsmom's Avatar
 
Join Date: Jan 2012
Location: Toronto, Ontario
Thats GREAT news!!! Good luck!!
11-13-2013, 02:54 PM   #6
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
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.
__________________

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
11-13-2013, 06:59 PM   #7
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
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.
__________________
DS - -Crohn's -Stelara
11-13-2013, 08:33 PM   #8
Mehita
Forum Monitor
 
Mehita's Avatar
 
Join Date: Nov 2011
Location: Minnesota

My Support Groups:
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!
__________________
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
11-13-2013, 08:35 PM   #9
Emilie
 
Join Date: Nov 2013
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.
11-13-2013, 08:47 PM   #10
Momto2girls
Senior Member
 
Momto2girls's Avatar
 
Join Date: May 2012
Location: Kansas
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/pu...an-clinically/
11-13-2013, 09:12 PM   #11
Momto2girls
Senior Member
 
Momto2girls's Avatar
 
Join Date: May 2012
Location: Kansas
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
11-14-2013, 08:01 AM   #12
dannysmom
Forum Monitor
 
Join Date: Oct 2010
Location: NY

My Support Groups:
Good luck today! I really hope you get answers ... she should not have to suffer everyday.
__________________
Jeanne
Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
11-14-2013, 08:07 AM   #13
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
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?
__________________
I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
11-14-2013, 03:01 PM   #14
Momto2girls
Senior Member
 
Momto2girls's Avatar
 
Join Date: May 2012
Location: Kansas
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.
11-14-2013, 03:54 PM   #15
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Levsin causes constipation
More later
11-14-2013, 04:04 PM   #16
Momto2girls
Senior Member
 
Momto2girls's Avatar
 
Join Date: May 2012
Location: Kansas
Oh fabulous. So why would a GI doc give her this knowing her primary issue is constipation!?
11-14-2013, 08:57 PM   #17
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
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?
11-14-2013, 09:15 PM   #18
Momto2girls
Senior Member
 
Momto2girls's Avatar
 
Join Date: May 2012
Location: Kansas
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.
11-14-2013, 09:15 PM   #19
Momto2girls
Senior Member
 
Momto2girls's Avatar
 
Join Date: May 2012
Location: Kansas
And I haven't called mayo yet...hopefully tomorrow.
11-14-2013, 09:37 PM   #20
Emilie
 
Join Date: Nov 2013
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?
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.
11-15-2013, 09:44 AM   #21
CrohnsKidMom
Senior Member
 
CrohnsKidMom's Avatar
 
Join Date: Mar 2013
Location: (Canada), Nova Scotia

My Support Groups:
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.
11-15-2013, 12:01 PM   #22
DanceMom
Senior Member
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.....
__________________
A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
11-15-2013, 12:20 PM   #23
Momto2girls
Senior Member
 
Momto2girls's Avatar
 
Join Date: May 2012
Location: Kansas
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.
11-15-2013, 02:05 PM   #24
DanceMom
Senior Member
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!
11-20-2013, 08:21 PM   #25
Momto2girls
Senior Member
 
Momto2girls's Avatar
 
Join Date: May 2012
Location: Kansas
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.
11-25-2013, 03:30 PM   #26
Momto2girls
Senior Member
 
Momto2girls's Avatar
 
Join Date: May 2012
Location: Kansas
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?
11-25-2013, 07:15 PM   #27
Emilie
 
Join Date: Nov 2013
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?
11-25-2013, 07:24 PM   #28
Momto2girls
Senior Member
 
Momto2girls's Avatar
 
Join Date: May 2012
Location: Kansas
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?
11-25-2013, 07:25 PM   #29
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
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.
11-25-2013, 07:47 PM   #30
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
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
Reply

Crohn's Disease Forum » Parents of Kids with IBD » Searching for a diagnosis: this time we're not giving up
Thread Tools


All times are GMT -5. The time now is 08:59 PM.
Copyright 2006-2017 Crohnsforum.com