Crohn's Disease Forum » Parents of Kids with IBD » L update and question

01-03-2018, 12:37 PM   #1
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GirlwiththeCurl's Avatar
Join Date: Jun 2015
Location: Wyoming
L update and question

Hi, All!

It's been a while since I've posted, but I kind of hang around reading posts. Even though I don't post often, I feel like I get a lot of good advice.

Overall L is doing okay. Her bloods are good, though her LFTs are rising just a bit (not unexpected with PSC). She eats enough to gain weight and grow. She gets through her daily activities without much problem.

However, she also still tends to have adominal pain, especially in the morning right after breakfast. Her appetite seems low to me, though she is still gaining weight (I think she lost weight over Christmas, but a stomach virus ran through the family so I'm waiting to see if she'll catch back up). She is EXTREMELY picky about what she will eat and will go hungry rather than eat something she doesn't like. Her stools constantly (every two or three days) go back and forth between normal and Bristol 6 (that's the weird fluffy/raggedy/mushy stools, right?). I've brought this up with her GI (liver specialist) at a couple of appointments and am always met with "She's gaining weight and growing. There are no inflammation markers in her blood. She's fine." I'm dissatisfied enough with this (especially since she has NEVER had elevated inflammation markers except for her LFTs--even before she was diagnosed when she had been having bloody diarrhea for ten weeks and was having the onset of AIH/PSC) that I've been toying with the idea of a second opinion. But I have questions. Right now L is seen at Children's Colorado which is the best regional place for GI/liver. If I get a second opinion at Boston or CHOP or Cleveland, and I agree with what they say, what then? Do I have to look for a new regionally local doctor? Do we have to transfer her care to the doctor at Boston/CHOP/Cleveland? We cannot afford to travel across the country for care. Also, if her PSC suddenly progresses and she needs a liver transplant, I don't want to have ditched her liver doc here, since Children's Colorado is a good place for pediatric liver transplants. I mean, I'm sure her current doc is not the transplant surgeon, but she would presumably oversee her care.

If someone could tell me how it works, I'd be very grateful.

(Also, my underweight son, S, is finally starting to eat and gain weight, and it seems to be tied to his constipation. We're attacking that and he's doing well so far. He got a little behind over Christmas (we traveled) but we're getting back on the Miralax horse. )

Primary sclerosing cholangitis
Autoimmune hepatitis
PSC-related inflammatory bowel disease

Azathioprine 20mg
Ursodiol 125 mg x2
Concerta 27mg (ADHD)
01-03-2018, 02:38 PM   #2
my little penguin
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Join Date: Apr 2012

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If you get a second opinion
The second opinion GI contacts your current GI to discuss the case
Then your child is either seen in person or a records review is done
Once that is complete
The second opinion simply tells you what is going on and recommended treatment/tests
They send this to your current GI as well
They donít cover on going care
Just one review

If at some point later you need another second option in a year or two
Same process

They may also do their own tests as well

They have staff who set up cheaper plan tickets and discounted hotels /Ronald McDonald House to stay

We have had 2 second opinions over the years .
DS - -Crohn's -Stelara -mtx
01-03-2018, 05:14 PM   #3
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Maya142's Avatar
Yes, that's how it has worked for us too - it's an opinion and they provide recommendations. We live close to one of the big pediatric IBD centers that you mentioned, so we actually switched care to there.

Any good doctor will not be offended by a second opinion. We have had doctors who have even suggested it. I think a second set of eyes always help. You don't have to follow their recommendations.

You can travel there and sometimes they will redo the tests (like they will do their own scopes) or they will have your tests looked at again.

Like MLP said, you can often stay at Ronald McDonald House or the hospital will have suggestions for places to stay cheaply. We have stayed at Ronald McDonald in Cleveland and it was wonderful.

The other place you didn't mention is Cincinnati Children's - that's actually better known than Cleveland Clinic for pediatric IBD (not sure about PSC though).

We have done MANY second opinions for my daughter's juvenile arthritis since it has been severe and hard to control. Most of them have been very worth it. Each rheumatologist has had a few new ideas to give us and a new take on her situation.
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
01-03-2018, 11:12 PM   #4
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Join Date: Mar 2012
Location: California

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Sorry I can't help you with the logistics because I have only been to a hospital for a second opinion and I could travel to that hospital if I wanted to switch.

MLP and Maya are experts at second and third opinions.

I just wanted to add that AIH/Liver issues and IBD are very different and I find that most GI's specialize in one or the other. This is not to say that they don't have experience in both but at most major pediatric centers there are specialists in each. Perhaps there is a dedicated IBD specialist at your center who can work with the liver specialist on your daughter's case?

Oh AND in addition to blood labs I would be asking for a fecal calprotectin test to look for inflammation.
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Vit d 2000IU
Multi vitamin plus iron

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet

Last edited by crohnsinct; 01-03-2018 at 11:14 PM. Reason: calpro menton
01-04-2018, 11:28 AM   #5
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GirlwiththeCurl's Avatar
Join Date: Jun 2015
Location: Wyoming
CIC--L's GI actually sees two different populations in the hospital, both liver patients AND regular GI patients (are there such things as "regular" GI issues? Ha!). 80% of PSCers also have a form of IBD, and I think that's why we were "assigned" to her when we were referred. But I have wondered if perhaps we should be seeing two different docs.

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