7 year old blood test positive for Crohns, can't get into Peds GI for months

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vanotter

Joined
Jun 25, 2013
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Long story, but my 7 year old daughter's pediatrician ordered some labs on behalf of a Peds Rheumatologist for an upcoming new patient appointment. The labs came back fine except for the "IBD sgi Prometheus" test, which came back "Pattern consistent with IBD: Crohns Disease".
She has daily stomach pain/aches...joint stiffness in her hands, and reflux, but other than that no symptoms.
Has anyone's child been diagnoses by this blood test? I am trying not to worry until I see the doctor...but that is so far off. What should I be doing meanwhile?
Her pediatrician said she didn't know what the blood test meant, and is referring us to the Peds GI, so there is no help there.
Any thoughts or advice?
Michelle
 
Sorry I am not well versed I that test but sounds like you have a great Rheumy if they are looking at all the possibilities. I would think that if the GI is willing to have you wait to get seen then there isn't a lot to worry about right now. I have never heard of anyone getting a definitive diagnosis straight from that blood test. Scopes are usually needed I think. When is your appointment with the Rheumy? I am sure they will give you much more info. Good Luck and we are here for you if needed but I hope we aren't!
 
Thanks! The appt with Rheumy is July 24th (ish)...10 year old sister was dx with Celiac Disease in spring of 2008...Then Polyarticular Juvinile Arthritis/Enthesitis (SP)/Spondylitis in Sept. 2009....older brother dx with Juvenile Arthritis (dr. is thinking along the lines of Psoriatic Arthritis but no signs of psoriasis yet) and myself also dx with arthritis (lower back/also thinking the PsA) this past year....so we for sure have the Auto-Immune stuff going on....I just can't believe this might be happening to her...and if it is...i certainly don't want her going untreated!
 
Wow! That is a lot under one roof. They are wondering about psoriatic arthritis with my Crohnie now.

Sounds like there is no way that angel will go untreated...she has a pro as a mom. How close are you to rheumy? Any way you could call and let them know you are anxious to have a discussion about the tests? Maybe get on a cancellation list?
 
yup, i called and talked to the nurse (since the same rheumy sees me and my other two kids, i felt comfortable to call)...the nurse talked to the dr. and he is going to try and get her into the Peds GI sooner and also put us on his cancellation list, but they are all booked up. We are close to the rheumy and GI but since there is so few peds specialists in this area, we have to wait a long time. Waited 9 months for my first daughter to see the peds rheumy! Waited 3 months for get her EGD to confirm her Celiac Diagnosis after blood work came back positive. SOOOO frustrating to wait while your child is suffering!
 
Hi and welcome.

My 4 year old goes to Devos. I assume that's where you want to go?
She see's the Rheumy, GI and Dermatologist there. Yes it does take a while to get in there.:ymad:
Johnny'sMom has been there also but has since moved. She'l be along when she can.

I hope you get answers soon. Please ask questions.

HUGS
 
Yes we are at devos also...at least i will get rheumy's thoughts in july....maybe he will even order some tests while we wait for GI..I hope anyway!
 
Welcome Vanotter! My 8 yr old son was dx'd in March. His symptoms sound similar to your 7 yr old's. Initial bloodwork showed his hemoglobin was low, so they figured there was malabsorption issues. Further bloodwork was done. I'm not sure of the specifics, but I do know that the drs were 99% sure that he had either Crohn's, Colitis, or Celiac's just from that bloodwork. An indium scan, MRE, stool tests, colonoscopy, and endoscopy confirmed the dx. Take care of yourself, you've got a lot on your plate. Hope you get in to see the specialists sooner rather than later!
 
Thank u all for your responses and support....i feel like im either on the edge of a breakdown or in 'lock ur feelings away and become mama bear' mode....sigh
 
Hi Vanotter,

I don't have any helpful information or experience regarding your situation, but I wanted to say hello and welcome you to the forum. So sorry to hear about everything you all are going through.

I pray you're able to get in soon!! I have said before on other threads when getting into a GIs office is booked up - you can always head to the ER when your daughter isn't feeling well - once in, let them know she was recently diagnosed, and when they ask who's her GI - you can honestly say, "we don't have one yet - can't get an appointment." They "should" get the in house doctor to look at her and they would need/want to follow up with her/you.

It's a wee bit on the sneaky side - but eh... it's for the kids ;)

Again - good luck!!
 
Hi vanotter and :welcome:

My goodness...:ghug:...I am so very sorry to hear of all you are dealing with, you must be beside yourself!

I have no personal experience with arthritis or arthritis associated with IBD at our end. We also haven't had diagnostic bloods either. But I would like to wish you well and hope you have solid answers for your daughter very soon!

Good luck Michelle and welcome aboard. :heart:

Dusty. xxx
 
Hi and welcome. Our experience has been quite different, so no great advice - sorry. Just wanted to send best wishes - hope they manage to get an appointment sooner. If in doubt, get hold of the secretary's phone number and phone once or twice a week to try get any cancellations!
 
wow, thank you all for so much support!
I got an appt at Mott's (UofM) tomorrow morning, can you believe it?! Devos wouldn't even schedule me yet!
I will fill you all in after the appt.
wish us luck!
 
Ya I can believe it. *IF* you want they can tranferr you over to Devos once you get answers.
QueenGothel (Mary) daughter Rowan goes there. I tagged her so she will stop by in this thread.

Mott's is a great hospital. Let us know how it goes.
 
:goodluck: Michelle!

I hope the appointment is able to provide you with direction and your daughter then finds long and lasting relief from what is ailing her. :ghug:

Dusty. xxx
 
When I had trouble finding a Pediatric GI, I got a list from my insurance company of doctors offices they accepted and brought that list to my primary care physican and her medical assistant got me an "urgent referral" and I saw new GI Doctor within a week. Also, you can always go to the emergency room. Stress how sick he is and they will hopefully admit him, that bypasses a lot of appointments as they just get everything done while he's there. Good luck, the process of finding a new GI doctor is an art.
 
well, apparently i need not have worried. The nurse practioner at Mott's came into the room and already seemed to have her mind made up that nothing was wrong with Lauryn. She sad the labs that said Crohn's were unreliable and she would never even order those (the IBD sgi prometheus).....she barely laid a hand on my daughter, and funny, didnt even ask when her last BM was. She said Lauryn is constipated and told us to start her on Mirilax....if that isn't working in two weeks, call her back. And, the reflux means nothing (how is reflux "normal"??) .....All this is based on the fact that her other labs are all normal and that she has not lost any weight. Whether or not she is right, and i really hope she is, I doubt she could figure anything out about my daughter with the amount of time she spent with us and the virtual zero physical examination! Way to go U of M!!!! The best my a**!
 
Wow! Just about all I can say is wow! She didn't even feel her stomach? How could she tell she is constipated? Is there some magical look that the kids give them? A check engine light that says "constipated" That is so unreal! A first visit with all these things going on and it was that quick. No doc review? I am sure you are already on the horn to another office.

When I saw your first sentence I got so excited...ergh!

Did you happen to ask about a fecal calprotectin test? You are so new to all this you probably didn't know about it. It is very possible for the bloods to be normal but for the inflammation to show in a stool sample and the test is easy and not invasive at all. It is also pretty good at picking up bowel inflammation Definitely put that in the back of your mind for when you have to phone her in two weeks.

Sorry things didn't go better for you.
 
Argh! Sounds like she punted. Really? Not even schedule scopes? Well, I guess at least you've got a start, and the follow-ups may develop to what she needs. Does anyone have any info on the accuracy of the Promethius diagnostic tests?
 
Hugs
FWIW my now 9 year old was very constipated at age 7 ( and still is) and has crohn's :mad2:

Nothing gets me madder.
His blood work has also been mostly as well
but his scope showed multiple granulomas and chronic as well as acute inflammation in his stomach, duodenum , TI, caecum and rectum.

Just saying.......

Keep pushing
if you think something is wrong.
 
Yikes! Late to the group, Jack has had the prometheus prognostic and while from what I've been told that in and of itself does not dx Crohn's it certainly tells if there is a genetic possibility based on how many and type of markers there are. I would think along with other symptoms it would certainly warrant further investigation at least a fecal calprotectin and labs, not just oh it's constipation, there are quite a few of us here that can tell you that certainly does not preclude Crohn's. Jack has presented primarily with constipation much more than diarrhea.
Keep fighting and pushing Mom until you get definitive answers!
 
Ya, I've had the same thing happen to Grace and I countless times. I always wanted to yell, do you think I would drive ALL this way if I thought it was "just" constipation.

Don't give up if you feel something is off. Your the mom and know her better. I have and so have many of these parents pushed for YEARS to get answers.
 
Welcome to the community. I'm so sorry to hear about everything you and your family are going through.

I agree with crohnsinct, ask for a fecal calprotectin test.

A few more questions:

1. Does your family drink either distilled water or reverse osmosis water?
2. If you wear jewelry with nickel in it, do you get a rash?
3. Has any of your family ever had their vitamin D level tested? If so, what was it?

All my best to all of you.
 
Please note nickel is just a working theory of mine and there's a very good chance I'm wrong. But part of the problem is you will NEVER see it on a label yet it is in SO MUCH. That food cooked in hydrogenated oil? High levels. Stainless steel cookwear and utensils? Check. Certain vegetables? Yep. Detergent? Mmmm hmmm. It's everywhere.
 
Yikes! I know I break out within hours of wearing it and Jack certainly does as well I can always tell if a snap on pants has it because he will get a little rash there. So hmmm definitely something to think about. We got rid of the stainless steel cookware so we're okay there.
 
That rash that he gets when his skin comes in contact with nickel? Just think what might be going on with his intestines when he regularly consumes it. And by regularly I mean daily. If he gets a rash on the outside, why wouldn't he get a "rash" on the inside?
 
How frustrating! I used to get so irritated too - my son was actually overweight when diagnosed, he was growing fine and "looked well". The only thing he had was a sore tummy every couple of months.
The only test that ever showed anything was the faecal calprotectin (his blood tests were always and still are fine). We actually got an apology from our paediatrician because he had been so convinced there was nothing really wrong (and I was getting sick of the "is he happy at school or is there any trouble at home" questions!)
Keep fighting for her!
 
My son started out at Motts. They are supposed to be very good for diagnosing but, we saw a GI specialist first, not a nurse practitioner. Maybe it has to do with the way your pediatrician is communicating and handling things and/or the stage of the Crohn's. Mott's facilities are excellent and their pediatric nurses, techs, and research assistants are also excellent, especially when it comes to needle pokes. But, they are a university/training hospital and my experience was that the doctors have little time for the patients (they are just too busy and fit too much into their schedules) and the UofM system is so large that the administrative and organizational aspects are a mess. We switched to Dr Truding at Beaumont. He is very knowledgable, cares even outside of the hospital parameters (he is very involved with camp Oasis), my son Nick really likes him and looks-up to him. I have been telling my pediatrician for a little while that I am concerned that my youngest has Crohn's also because she has so many symptoms that are the same as those my son had when he was younger. Including weight loss which is very uncommon for a 5 year old, plus regular, unexplained fevers. The pediatrician had her take blood and stool tests that came out negative. But, I talked to Dr Truding about it during an appointment for Nick and he ordered a different stool test for her (it hasn't been done yet). I guess it's possible that she has it but the symptoms aren't strong enough yet for her to be diagnosed or be treated.
 
Vanotter,
I would ring the clinic and ask for a better explanation as to why they dismissed your child's case. Like was there blood work they were basing this opinion on. I would also request it come from a actual GI not a nurse since this is what you paid for was a second opinion from a GI not a nurse. If they refuse any of this... tell them you would like the email addresses to write the GIs departments social worker and Chris John Dickinson MD (Pediatric Associate Chief Medical Officer) and MacIovio James Lopez, M.D., Ph.D. (Director, Gastroenterology) about the way you were dismissed without seeing a GI. This should get you the attention and information you want. I have the address somewhere let me know if you need them. :thumright:

I do agree that the Attending GIs are excellent but the GI clinic nurse and GI fellows are quick to dismiss you. The problem being is the volume of admitted kids. The attending usually do there rounds all day long and the fellows take care of the clinic. So the inpatient care is awesome but really is terrible outpatient. I am very glad my daughter sees a pediatric surgeon there whom is an attending and is very involved and talks to me directly.

A quick vent about my bad experience from hindsight. My daughter (severe UC) appeared anemic to me. I rang the clinic worried on a early Friday morning. Because of my concern they sent a blood test for a CBC to my local hospital. The fellow didn't write it stat. When I called for the results over the weekend, I was told to quit calling so much by the fellow and if something were low the lab would have contacted both me and the him. Well on Monday I got a call from the Attending to bring my daughter in through the ER her hemoglobin was a 7.5 on Friday. She needed an emergency blood transfusion. She was admitted. When I spoke with the Attending she was beside herself that the fellow instructed me to not call unless her symptoms change. I told her I did as I though she was severely anemic. She scolded the attending and told me I did the right thing.

So talk to a Attending if you can get one. Otherwise at least a Fellow GI for a better explanation of why the case was dismissed. Or make your threats known and if they do not comply... Write the letters and send them out. My guess is you will get a GI. They will call you. They really don't like it when you complain. I have been there and done that and I love Motts. But sometimes you get a bad apple in the bunch. It happens at every hospital. Don't ever EVER go to Detroits Children's hospital DMC. That place is terrible! Worst experience ever!
 
I am hoping there was a real reason for the dismissal of the case. Bloodwork that was done maybe that you are unaware of that was sent with the medical records. I really hope you kid doesn't have IBD and your lacking a proper explanation. My assumption is a GI reviewed the case and didn't give you all the reasoning behind their dismissal.
 

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