Who is your doctor?

[andrea]

Hi, everybody!!!
I would like to Know where you are been treated; is there some specialized center?? Some of you Know Dr Dean Tolan?? I´m sorry about these questions, but it is important to me to Know if there is a Medical Center with knowledge enough about this disease in another Country.

[Tammy]

Finding a good doctor is probably the biggest problem for most everyone here. There isn't any one medical center that knows it all.
Fred has a good Dr in Canada.
Dr Dean Tolan is probably the most knowlegdable in the US. Regina goes to one in Danville, PA. Her Dr sent blood samples to Dr Tolan, but I have never met him, only corresponded with him through e-mail.
I was fortunate that Regina's ped had heard of a case of HFI one time and thought about it. Before he moved to this town, all her Dr's were just like everyone elses here.....Just scratching their heads saying I just don't know.

Since Regina was officially DX, Dr Tolan will answer my e-mail questions when I have one, but only about HFI. Her Dr's here take care of all her tests, well being, etc.

This is probably not much help, but as you can probably tell from a lot of other posts, Most of the mothers here are having the same problems with finding a good Dr.

[kristen]

Dr. Tolan does not see patients. He is a scientist. I have asked him for names of Drs 'knowledgeable' about fructose intolerances, but he does not have any suggestions.

We saw a Dr that we like at Children's Hospital Boston, but she no longer is seeing patients. We were transfered to a Dr that basically facilatated our move to a new one at Mass General Hospital in Boston. So far we like her, but she honestly admits that this is not something that she has expertise with.

Hope that helps,
KJ

[andrea]

Thanks Tammy and Kristen. You help - me a lot. I´m seeing that it doesn´t matter where you are, the difficulties are the same...
Kisses,
Andréa

[Chelsea]

depts.washington.edu/genediv/mraff.shtml

I really like Dr Raff. He has been very honest and upfront about his experience with HFI, which he says he has seen before but rarely. He immediately sent tests off to Boston (though there was some confusion about this intially). He has been very kind and has good follow though. He has never doubted her diagnosis or denied her having issues. He also hasn't pushed for a liver biopsy until recently which so many other issues in the mix.

Having said all these wonderful things about him, I don't think he knows much about it. I think he is learning as we go as well.