Anyone know of any Ped GI's in the US who specialize in upper crohn's??

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my little penguin

my little penguin

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So DS is still have symptoms and I find out he also has crohn's in his esophagus.

So he has crohn's in :
esophagus
stomach
duodenum
terminal ileum
cecum

Not sure how to treat his upper crohn's and I don't think his GI has enough experience so even if we just get a plan somewhere and head back.
:sign0085:

I feel like we are going in circles right now
 
My son has Crohn's in his esophagus too. At diagnosis the number and size of the ulcers in his esophagus shocked the GI. He was put on a proton pump inhibitor (Prevacid) along with all the other meds. It seems to be working as he no longer complains of heartburn.
 
mylittlepenguin - Claire was mouth to rectum at diagnosis. To my knowledge, it isn't treated differently........ Anyone heard to the contrary?

J.
 
Thanks- Julie -Just me hoping for something- not sure what
to say do X and things will be good. KWIM.

Twiggy-The esophagus showed chronic inflammation while on prevacid so ....

Just gave the second MTX shot tonight
hope it starts to work soon.
then I will feel better.
Just had to deal with a lot of hospital "oops" things today so not thrilled with them in general.
 
I have heard some of the drugs are formulated differently...for instance Pentasa is coated to be released in the colon, which wouldn't help esophageal disease any. Izzi's Crohns colitis is treated more like UC as she presents like UC. IDK of any specialists, though, MLP; best of luck finding one!
 
I guess it's possible but I would lean toward not so much a Paed GI that specialises in upper Crohn's but rather one that specialises in Crohn's full stop. I think with the spread of Crohn's that your DS has a holistic approach might be preferable. A decent Crohn's specialist should well be able to deal confidently with whatever presents from top to bottom.

Good luck hun! I hope someone is able to recommend a fab Crohn's specialist to you. :hug:

Dusty. xxx
 
Right now just not trusting our current facility-

So here is the problem-
1.)GI does not specialize in IBD- but does have colleagues that do and regularly consults when things pop up. He is more than willing to research anything I ask- LDN, mastocytic disease etc... plus regularly available to call/see quickly.
WE adore him as a doc.

2.) Just found out yesterday the path report from his scope from Sept 2011 is different from 2 different hospitals :facepalm:
I am waiting for a copy in the mail from the 2nd opinion place we saw in Nov 2011.
OUr current hospital's path report said his esophagus was normal. Hospital #2 said chronic esophagitis :ywow:. Once I get the full report I can compare the two and see what else was different.:ymad:

3.) His last CT report (hospital #1) had the wrong patient history on the top.:voodoo:. So I am still questioning if that was even the right report. The hospital did re-read it but still.

This makes me less trusting of the current path report June 2012. I was told it was normal. I will get a copy next week.


So that leaves us with a very long drive/flight/hotel stay to the remaining ones in the US(including our 2nd opinion hospital) and considering we have not gone more than 6 weeks without seeing the GI:frown:
 
MLP, so sorry you have so many concerns - ugghh, so frustrating when you have concerns over doctors, test results, etc. on top of worries over your son!

I'm sure you've done this already but, have you looked through the doctor's directory here? Also try the site www.ratemds.com, you can enter your city and doctor's specialty and you will get a list of doctors with patient reviews. Can't vouch for the reviews but it may be a starting point.

Good luck! :ghug:
 
Oh MLP I am so sorry:( Stinks to not have complete confidence in your practice and hospital and to have to manage them on top of taking care of your child?!

Can't remember if your son has been on Remicade (rushing to get packed and obviously not doing a good job of it) but I know our doc who specializes in IBD uses it for quite a few patients with Crohns throughout the system.

I hope you can get answers soon and get on your way!!!:ghug:
 
I was 12 when I caught Crohn's in the esophagus and my GI put me on Carafate. This huge horse pill. yuck. Since then, I've been ok. What state are you from?


Can you contact your local CCFA chapter and ask the members if there are any good GI pads in your area? worth a shot as we have GIs and surgeons who support our chapter where I live.
 
OUR local CCFA chapter has about 4 kids under 15 total including my son.
One of the other parents with a younger child also see the same GI as we do.

The hospital we are seen at parents drive from all over many hours to get to and they have all the CCFA booklets etc..

There are other docs there with IBD experience (lots of patients, trained at Toronto's sick children other "good" ped ibd hospitals etc...) - who our GI consults with-- just having a hard time getting over the pathology dept. KWIM.

IF the path is wrong - no doc is going to be able to treat properly.

DS is currently on Methotrexate. He had his second shot last night.
He got facial flushing (lasted 2 hours ) and was extremely tired out today.
I hope that means it will start working soon.

Crohnsinst-
He is not on remicade. GI didn't think he was bad enough- he discussed this with his colleagues. Scope looked red inflamed but pathology :)voodoo:) was normal. His sed rate/crp has been normal for a few months.
So we changed from 6-mp/allopurinol/asacol/prevacid/miralax to methotrexate/asacol/prevacid/miralax + pred taper.
in hopes to stop his symptoms so far nothing and we have been on pred ( 30mg first week- now at 25mg). Just not sure if his stomach aches LRQ ,constantly feeling like he has to go and constipation are from his crohn's.

WE are looking at mast cell activation disorders since they "Fit" his over the top allergic profile. Which is why I was calling the second opinion place about the past pathology.


I want my manual on how to proceed now.:ybatty:


Thanks for all your help- it has been great to "Talk" this through with everyone.
still not sure what we are going to do just yet.

If we didn't like our GI this would be a lot easier.
 
You've been quiet as to how things are going...how are they going? Did you come to a decision about a second opinion and how to proceed? How is the Methotrexate going? Did the pill cam ever get approved?

Maybe you posted and I missed something between being away and the crazy return. If so I apologize. Just thinking of you:ghug:
 
UGH! How utterly frustrating and the poor dear heart continues to suffer! How is your pediatrician? Can you use them as a resource to get you in to another GI quickly? Ours is great. They do all the calling etc and bam you are in. I also can't believe your current practice is not appealing with the insurance. It must be exhausting taking care of a sick child, worrying and now having to manage all the minute insurance and scheduling details. You are an awesome mom! :kiss:
 
HEY! Where did your response go? Are you trying to make me look crazy responding to something that isn't there?
 
Pill cam denied- off to 2nd opinion GI
The office did appeal - but nada.
MTX really bad fatigue the day after- otherwise nothing

He continues to get stomach aches which are getting worse even waking him during the middle of the night multiple times a week.
We will find out soon when we can get in to the GI.
We are going out of state and depending on how sick he is depends on how fast he will get in.
 
Oh, I'm sorry he's still not feeling any better! :ymad: I hope you can get the apptmt soon and that something (metho or other) can begin to make him feel better! :ghug:
 
Oh mlp, I'm so sorry to hear this. :(

Good luck with the new GI, I hope the wait isn't too long, bless him...:hug:

Dusty. xxx
 

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