Hello Kanaaz I contacted coordinator of clinical trial 20314533 at Mayo. I was informed is only available to CG patients who are seen at Mayo and have Endoscopy/Colonoscopy there.
Disappointing as CG is so rare there will never be significant number of patients at any one facility.

Hello @mindi,

I've just sent you a Connect PM (private message) with some information; I hope that helps.

That is not helpful at all but we can redo all of the testing if Mayo will pay for it....what is the likelihood of the happening? Our pathology has been confirmed by one of the best pathologists in the country at MUSC...so frustrating. WE have hit every wall.
Thank you for the information.

How do I get to pm?

Can you send me the same info?

I share your frustration. I would be at Mayo Clinic on the next plane but the testing policy - as near as I can tell - is giving them a blank check. Luckily, we live near some great facilities. Not everyone is that lucky.

OMG...I am so stressed out and saddened for my kid. I was referred to a dr. here but have not made the call yet. I do not have a blank check but will do anything for my child. This is his entire life and NO ONE in SC has heard of CG. Where is the assistance???

@kellye5 I don't know if this will help or not but you may find more information here:

Here is information about Mayo Clinic's Billing and Insurance which includes information about Charitable Care and Financial Assistance at Mayo Clinic

-- http://www.mayoclinic.org/patient-visitor-guide/billing-insurance
-- http://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance

John

I'd love that info too. I've considered contacting the Mayo Clinic, as my daughter will likely need another Endoscope in 6 months to a year to see how things are progressing and my thought is why not have the Mayo Clinic do it so she and others could be helped? We have a great Children's Hospital here in Columbus, OH, but there isn't anyone too familiar with CG. I have good insurance, but would need to know the details about what is covered financially speaking. Also I am very cautious and do not want her going through more scopes and procedures than necessary for her. Doctors here have talked about extra scopes and MRIs with contrast "just to make sure we're not missing something". I'm not for putting people, especially kids, through procedures for the sake of putting them through procedures and on my dime. Even with insurance the last scope and visits were thousands.
@kellye5 - You and your son are in my prayers. Zofran was a life saver for me during pregnancy as I was hospitalized for dehydration with both my kids. I sure hope you will be able to get what you need to help him get through this. Don't give up fighting and searching. My daughter is doing really well and has been a trooper with severe diet changes. Hard to tell yet how much it's helping, but she is gaining weight, hungry often (which hasn't been the case)...so both of those good signs. Keep the hope we'll find some answers together!

I am sorry Kanaaz but I don't know where to go to find Connect PM (private message) you mention. Can you re post on this page please. Other members may find information helpful too. Thank you.