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Crohn's Disease Forum » Parents of Kids with IBD » Hold my hand for a second opinion


08-24-2016, 06:12 PM   #1
malorymug
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Hold my hand for a second opinion

You all have been telling me for months that we need a second opinion. I have resisted; why? It feels like I'm being disloyal and it seems like so much work. But, now, I've had it. I don't believe we are getting the best care and that is what matters. My boy has been in the hospital for a week and looks like his internal sphincter is at risk because the disease has been left unchecked for too long.

Will someone help me get a second opinion? I don't know where to go or how to start the process.
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Mom to: 15 year old boy
Crohn's in stomach, small intestine, large intestine, and perianal disease
Diagnosed April 2014, at age 13

Currently taking:
Remicade 10mg/kg every 6 wks
Methotrexate 7.5 mg/wk
Cipro
Augmentin
Miralax

previous meds:
6mp 50mg
Flagyl
Cipro
Prednisone 30 mg
08-24-2016, 06:46 PM   #2
Maya142
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Oh no!!! I'm so sorry to hear that. Your poor boy.

I'm going to tag some parents: my little penguin, crohnsinct, Clash.

We have done several second opinions. We usually just make an appt. wherever we want to go. There are numbers on the websites. Usually there is a wait -- it can be up to 3-4 months.

The three big IBD centers are Boston Children's, CHOP or Cincinnati Children's. They are all far from you, but it is probably worth traveling for a second opinion considering what shape he is in.

You can also just do a record's review if you don't want to travel.

If you actually want to switch his care to a different hospital, then it would make sense to look for one that is closer to you.
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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
08-24-2016, 06:56 PM   #3
malorymug
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Thank you. I guess I need a records review because really there isn't much to see on the outside. Last imaging shows the progression of the disease quite clearly.

I filled out the form for CHOP, so hopefully I'll hear from them soon. Will they tell me how to get records or do I just go to the medical record desk and ask for them?
08-24-2016, 07:00 PM   #4
Maya142
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You get them from medical records typically. At least, that's what we did.

We have never done a record's review but hopefully someone will chime in soon. The advantage of going there is being able to talk to the doctor in person and discuss the possibilities. They also might be able to get you in with a surgeon if necessary, to discuss the possible surgical options.

For example, when we went to Boston Children's (for rheumatology), we saw pain management, rheumatology and a jaw doctor. When we went there a second time, they also did an MRI while we were there and steroid shots the next day.

I think (and someone should correct me if I'm wrong), you would just get recommendations with a record's review.
08-24-2016, 07:16 PM   #5
malorymug
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That makes sense, to talk about the possibilities. I wonder how long after this hospitalization will we be able to get the records. Do they give them straight to us or straight to the second opinion doctor?
08-24-2016, 07:23 PM   #6
Maya142
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I think you would be able to get the records as soon as he is discharged. They can do either -- give you a copy or send them straight to the doctor you want them to be sent to. We have done both and have even gotten pictures of the scope images. They can even put images on a CD.
08-24-2016, 07:26 PM   #7
Maya142
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Also, in some places you can stay at Ronald McDonald House to cut costs. Not sure how the one by CHOP works -- some of them let all patients/family stay and others are only for pediatric cancer patients (not sure why).
08-24-2016, 07:40 PM   #8
my little penguin
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We have done two second opinions
The question is do you want an evaluation that comes up with a plan and sends that plan to your current team( we have done this option )
Second option is evaluation but with intent of switching providers - we were told they typically want the Gi office /hospital within 3 hours of your home .


Getting a second opinion at your current hospital is not recommended
You can get a second opinion at far away place and then based on the results decide if your staying or leaving your current provider


Simple to get a second opinion. Just call and ask
They will tell you what records they need and where to have them sent
Then go online to your hospital's medical records dept
Fill out the form include imaging and biopsy slides on the form
Plus all progress notes pathology reports imaging reports and outpatient summary
Then send it
Call the imaging sept and get the images on disk sent to 2nd opinion place
Call the pathology dept and have all biopsy slides sent

That's it
They will call you with any questions

You can choose to tell your Gi or not
Our Gi welcomes a second set of eyes and encourages lots of second opinions so we all know everyone agrees


Sorry your Ds in the hospital
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08-24-2016, 08:59 PM   #9
DanceMom
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Our GI says that any doctor that is offended by a second opinion is not a doctor you want to have. He arranged a second opinion at Atlanta's IBD clinic for us, and also arranged a second opinion Immunology appointment at another nearby children's hospital. Our Immunologist made it clear he didn't like that we saw her so I promptly fired him and switched her care. You do what you need to do for your child and don't worry about offending anyone.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
08-25-2016, 09:20 AM   #10
CrohnsKidMom
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I would recommend checking with your private insurance coverage. We did not require a second opinion for our son, but if we had, all our medical evidence that had been given to the insurance company would have been forwarded to Boston Children's for a second opinion by a GI there. It may be a possible way to get another GI's eyes on your child's file without the commitment of switching doctors.
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08-25-2016, 04:31 PM   #11
Farmwife
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I agree with the above.
We went to Mayo Clinic for Grace's second opinion.
Matter of fact this last flare, her rheumatologist asked if we could go back to Mayo for more advice.
I learned that once you have doubts about the gi, it's best to move on to someone else.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
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