Results from MRE....

[sarah02]

I am beyond upset....the MRE showed nothing! The peds GI from Hopkins told us to get a second opinion. What dr tells you to look elsewhere??? Especially from Hopkins???

I don't know what to do now...The Dr suggested CHOP, or Cleveland Clinic. But won't they do the same test and find the same things??

My daughter had her first therapist appt. this afternoon, and the therapist agrees with me that this is medically based, and that she is doing well emotionally through out all this..

So...basically the Hopkins Dr won't treat her anymore, because she believes nothing is wrong. She cancelled her scope for Friday even...

Thank you all so much for understanding and being so supportive...I am doing my best to be strong for her, as I know me getting upset doesn't help anything.

Sarah

 

[Sascot]

Wow that must be so frustrating! I don't understand why she would cancel the scope. When my son was being diagnosed - all the imaging came back fine apart from the scope which showed tiny ulcers. Maybe another hospital will do the scope without having to do any of the tests she's had done all ready. Keep trying, you know your child best.

 

[dannysmom]

I cannot believe the scope is canceled. (I take it you are seeing the head ped GI there? Uggh!) I am so sorry. How frustrating. "She believes nothing is wrong." ... Ugghh! (We had the same feeling with her!)

CHOP and Cleveland clinic are both very good.

Danny's most recent tests (for neuroendocrine tumors) also came back normal. So we do not have our next stpe planned ... but at least we have doctors that believe something is wrong and admit he is a tough case and are still trying to think of something. You really need to find a doctor to support you. I am glad the therapist agrees with you.

 

[Lilmamma]

I really hope you can find a Dr that will give you some answers quickly.
With my daughter, the only thing that showed Crohn's Disease was her colonoscopy. Everything else came back completely normal.
:ghug:

 

[imaboveitall]

Sarah, have they said anything about a capsule endoscopy? That reveals all in the small bowel.
I don't understand docs giving up on diagnosing symptomatic kids...:yrolleyes:

 

[sarah02]

I am also shocked to hear she cancelled the scope. At this point I am glad though, because if the Dr doesn't believe her, then is she really going to take her time and look for tiny little ulcers?? I have lost faith in her, and can't go back anyways.

I asked about the capsule endoscopy, and she said it was not medically needed.

I guess tomorrow its time to try and get an appt. at either of the hospitals.

Do you all have any other ideas as far as places to go that are somewhat close to PA? At this point driving to Cleveland, or Phili sounds like my only options...

 

[my little penguin]

From PA here.
Cincinatti Children's is number 1 in the country next to CHOP for ped GI stuff.
WE got our second opinion there.
I agree with the others a scope is the way to confirm. All of my son's other tests were clean/normal.

It takes 6-8 weeks to get in so I would call now then you have "time" to change your mind if your want to.
They have a very extensive IBD clinic that lasts a few days to fully evaluate the kiddo.
:goodluck:

 

[Mallory's Mum]

I second Cincinnati. That is where we go and where we live. We are lucky. We are actually impatient right now with iv steroids in hopes of something working. Hugs.

 

[izzi'smom]

I am shocked that she cancelled the scope...the MRE shows the small bowel, which is NOT looked at during a scope. SMH.
The Cleveland clinic is #1, followed closely by CHOP and Boston Childrens in peds GI care, according to my research. We narraowed it down to Boston/PA for ease of travel (they are closer), then Boston because we love to visit there.

FWIW, Every peds GI that I have discussed my daughter's case has asked if we have gotten a second opinion. I think it is commonplace in cases that are clearcut. I do hope you get the answers you are seeking. :heart:

 

[sarah02]

From PA here.
Cincinatti Children's is number 1 in the country next to CHOP for ped GI stuff.
WE got our second opinion there.
I agree with the others a scope is the way to confirm. All of my son's other tests were clean/normal.

It takes 6-8 weeks to get in so I would call now then you have "time" to change your mind if your want to.
They have a very extensive IBD clinic that lasts a few days to fully evaluate the kiddo.
:goodluck:

Where did you go? CHOP or Cincinatti Children's..

We have decided to call and see who can get us in first, and go from there. I am just confused because if we go, will I have to drive back and forth all the time doing tests and what not??? Do I tell them when I call I am driving 8 hours to this appt, so can we plan ahead?

This is when winning the lottery would be so nice....money is so tight trying to deal with all this. I can bearly work, and we are a 2 income family. I don't want my daughter stressing about this so I don't really say much about missing work. But I have NO idea how we are going to pay for all of this.. Insurance is a NIGHTMARE!!!

Thanks for all of your replies and thoughts..
Sarah

 

[izzi'smom]

When we went to Boston, they required that we send all of our results/reports/biopsy slides to them before even scheduling an appointment for us. They knew insurance was an issue for us. We didn't get any testing done there.
I know in Boston, there is a house for any child treated at Childrens that is $30/night. Availability is limited, but there is also another program that provides free/low cost housing in Boston for the same reason.
I can understand...I will be taking unpaid leave for Izz's surgery under FMLA but fortunately her dad has plenty of sick time banked that he can draw on while she is out...this will support us both temporarily.

 

[my little penguin]

WE went to Cincy since Ds did not have typical presentation and has lots of "other" things going on.
Most of the patients are out of state or country.
There is a Ronald mcDonald house .
They also will set up medically discounted hotels/condos.
WE only went once since our current GI had worked with the second opinion doc at Cincy before. DOc #2 just wrote a nice letter of recommended treatment plan to doc#1. We did not have a scope there since Ds got worse before our appt out there and had to be scoped quickly.

 

[DustyKat]

Hey Sarah...well that just sucks big time! :voodoo: IIRC your daughter vomited up the majority of the contrast so the test was hardly reliable anyway. For the GI to cancel a scope based on that is deplorable, not to mention that scopes are still the gold standard when it comes to diagnosis. It doesn't make it any easier but it sounds as if you will be much better off to be well away from her!

Well it goes without saying that I can't recommend docs to you, :lol:, but as far as the distance thing goes...yes, tell them that getting there is not a matter of jumping in the car and popping around the corner. In our case I found over the years that for those that have grown up and stayed in Sydney the majority have no concept of life or distances outside of it, so I have no hesitation in ramming the point home that I LIVE 600kms AWAY! :ylol:

Good luck hun!

Dusty. xxx