What if scopes come back "off"?

[Farmwife]

I thought this would be a good thread to offer advice to those of us with with children going through the process of getting a dx!

What IF the initially scopes come back with signs of IBD (scarring, inflammation and such)
. What questions should be asked?

 

[Tesscorm]

Some of the more knowledgeable will give you some more detailed info but to start...

Where is the inflammation
Does it indicate crohns - cobblestone appearance, patchiness/skip pattern
What cud be causing inflammation - something other than crohns?
What do biopsies show
Because scopes don't reach in small bowel, I'm not sure it can show stricturing/wall thickening??? If it can, can they tell if its scarring or inflammation (this isn't always clear on an MRE)
Sas scopes show just a bit at the TI - did she have an MRE (sorry, I've forgotten), if not, shud she have one (if no, why not?)

But I'm sure these are only the 'basic' questions...:redface:

(By the way, great question! I'll be taking notes too!! :thumright

 

[my little penguin]

If they find ibd typicalky the child is scheduled for an mre or ct right away and sometimes a pill cam as well to determine the full extrent of the disease Prior to starting meds. as a precaution in the us they may be started on pentasa / 5-asa plus pred prior to the scans.
1,Where is the disease located?
2. What is the severity?
3. Meds? Why? How long?
4. When to follow up ?
5. When to call?
6 when to go to ER?
7. What does the doc consider as remission
8. How long till meds work?
If not plan b or c are ?
9. Any blood work needed? How often?
10. Trial of EEN?

 

[Tesscorm]

Thought I'd post these questions here instead of Stephen's thread as it may interest FW and others as well...

1. Are biopsies ALWAYS done with scopes?
2. What is the purpose of the biopsies? ie are they done because inflammation can sometimes not be visualized and the biopsies indicate miscroscopic inflammation activity?
3. Granulomas - are these found through biopsies or just the scope? I believe you can have crohns but no granulomas but does the presence of granulomas give absolute certainty of crohns?
4. Is there a typical number of biopsies that are done during a scope? Are they done just where/if inflammation is seen or randomly?
5. Is there any other info that should come from biopsy results?

 

[kimmidwife]

Make sure to ask for copies of the pictures and start to keep a file. I have copies of all of Caitlyns.

 

[David]

In addition to the great responses above, ask for a copy of the biopsy report. It's extremely important to have this kind of stuff in your file at home.

 

[Dexky]

EJ had eosonophils show up in his last scope. I may not be able to spell it but because of this forum, I knew what they were when mentioned. It took us down the path of allergy tests that revealed squat. Nevertheless, it's good to be pre-educated!

 

[my little penguin]

Dexky-
How many eosinphils and where?
Allergy testing ( IgE) and patch testing does not typically reveal what is causing the Eos.
EGID are mixed meaning IgE and non-IgE responses.

Here is link:
http://apfed.org/drupal/drupal/diagnosis_of_EGIDs

There is EoE ( esophagus ) EGE- stomach small intestine, EC - Colon
Typically 75% of children clear on a diet free of the top 8 allergens ( milk, wheat, eggs, peanuts, tree nuts, soy, fish, and shellfish).

Some need to go Elemental formula ( Neocate and Elecare are amino acid based - typically needed)

Once you have been on formula for 6-8 weeks then they rescope
If the scope is clean no Eos then you slowly trial in food 1-3 at a time until you have a complete diet back and can remove the elemental formula.

Some Eos are expected in the small intestine /colon etc... but if it made the biopsy report then he may have had EGID

Most GI do not specialize in EGID NAtional Jewish Hospital in Denver Co is good and so is CCHMC ( Cincinnati Center for Eosinophilic Disorders)

http://www.cincinnatichildrens.org/service/c/eosinophilic-disorders/default/


Here is a support group for Kids with EGID including EGE, EC, and EoE.

http://community.kidswithfoodallergies.org/displayForum/forum/eosinophilic_disorders

Let me know if I can help.

 

[Dexky]

Will have to get back to you on the how many and where as I'm not sure. EJ definitely has a shellfish allergy and our gi suggested trying gluten free following the scopes. I very much trust his judgement. EJ has had no major complications this year so we will continue gluten free at least until his scopes next June. If eosinophils are still in the picture we will investigate in more detail I presume.

We are currently waiting on his latest bloods from the 20th. The EGID is certainly worth considering. Thanks MLP!!

 

[my little penguin]

Dexky
If they are citing EOS found in the biopsy report then unfortunately it is an EGID - those are triggered by food . This is a relatively new disease ( 10 years or so).
Left untreated damage will continue to to the gut/ Gi tract even without obvious symptoms some kids only know by scopes.
Finding the trigger is the key.
The other thing to note- any oral steriods within 7 weeks of the scope will clear the EOS and give a false clean scope.
With as much as your kiddo has going on - I would really reccomend cchmc eosinophilic center .
This disease can have serious ramifications if left untreated.
The center has a one year wait list .
The head doctor there is Dr. Putnam who is a expert in the field .
Please get a copy of the biopsy report - at the very least send the slides and medical report for a record review . Cchmc will not schedule your child an appt unless there is a very clear dx of egids . They do not have extra time slots to waste .
Before they schedule they will do a complete review of all records , have their pathologist re. Read the slides for EOS among other things, plus talk to you.
If they deem the EOS is at play then they will schedule your kid in the week long program .

I only know because for a while our Gi was convinced this was DS problem - we didn't know about the Ibd yet.
Fwiw cchmc would not see DS since he did not have egid after they reviewed his records .( prior to his lower scope confirming Ibd ).

Wish you the best of luck - just not something to leave cause damage unseen.

 

[upsetmom]

What's happening with the scopes.....are they still on?

 

[Farmwife]

Yes!!!!!

 

[upsetmom]

I wish you all the luck in the world.....:hug:

Hope you finally get some answers.

 

[Misty-Eyed]

If they take biopsies which they should do, you should actually have a firm diagnosis from the path reports. When I had my first colonoscopy they knew for sure that I have Crohn's or UC just from what they could see. After that it was just a matter of time to wait to see which it was from the path results.

Questions I would ask after that include ones that people have mentioned before include severity, location and most of all, where to go from there regarding treatment.

 

[my little penguin]

Goodluck FW enjoy your Christmas