Kennedy Krieger Leukodystrophy Clinic

My wife and I have plans to travel across the country to Baltimore to see the specialists at Kennedy Krieger. On their leukodystrophy clinic days, you are able to see specialists in neurology, endocrinology, physical therapy, rehabilitation, social work, and urology. I am very interested in hearing the thoughts of those who have been out there.

What part of the visit was most beneficial for you? Were they any elements that were difficult for you? Do you have any recommendations for how to get the most out of this visit?

Thank you in advance for your advice and for sharing your experiences. Stay strong, and have a blessed day!

7 Replies

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  • Hello! I picked up my iPad and found your question.

    My first suggestion is that you take with you a complete list of meds - any that didn't work for you and all supplements.

    Take a list of all questions! Anything you'd like them to answer or consider.

    Ask for info on studies you may be eligible for, that aren't too invasive for you - they usually let you know and have you sign off for them anyway. Someone, if not you, may benefit from it.

    Depending on how long you plan to be there, we stay near to the Inner Harbor. Wonderful restaurants, aquarium, etc.

    I SO enjoy these trips! I get to see people that have been a huge part of my diagnosis and subsequent care. My experience has been really good!

    Best of luck on your trip! I'll be in touch soon!

    Best to Katie and you,

    JoAnn

  • I write down all of my questions. Even now, and I see my neurologist every chance I get.

    I used to (secretly) record it all as well, just in case I missed something, but I stopped when I realised that I never bothered to listen to it.

  • I know of two folks who go to Kennedy Krieger and travel major distances to get there. One is from Canada where I am from. There are no doctors here to help us adults. I will be interested to hear your feedback too. Good luck.

  • Hi nan17, I am CDN also with high VLCFA on KK test. I would love to go down there for consults etc. Does your medical cover any of it? I have great extended medical but getting them to approve anything has proven impossible.

    Cheers and thanks

  • There is a conference this year I think in Minesota. That's where you would get more information on upcomming treatments. Look on the ULF website Pat 60 yearsnold 30 years i the battle

  • You will not be disappointed. Our family was diagnosed and treated at Kennedy Krieger. They have an outstanding , caring staff and Dr. Ali Fatemi is a kind, compassionate doctor specializing in ALD. Throughout the year , they are always accessible by phone if you have any questions or need someone to read an MRI. Good luck and have a safe trip .

  • I apologize for not replying sooner. The past few weeks have been absolutely crazy as we prepare for our trip and try to coordinate everything. Thanks to everyone for your responses. I look forward to this visit and finding out some information that I did not have before.

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