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My son Jacob 13, was diag. at 10 and we have followed up at Umass, I will just say esp. as of late we are not happy with the level of care he is recieving. He is relatively stable and we feel very comfortable with "self" managing him. However I was hoping for a little more compassion and support for him as he is coming into the teen years. Any suggestions would be greatly appreciated! Amy
My name is Geoff. I was diagnosed with diabetes at 5 years. I am entering my 60th year. I have nothing but compliments about Joslin. I would credit them for as well as I am doing. Please go to Joslin.org. You will find a wealth of information there. You should be able to either talk with someone or get information to get an appointment with a pediactric Diabetes specialist. Best of luck
The folks at the Pediatric Specialty Care Group here in Portland (at Maine Med.) are second to none. My son Eric's endocrinologist, Jerrold Olshan (not coincidentally, the coauthor of my book too), not only is head of the group, he also acted as a foster parent to a T1 teen who was having diabetes control issues. So if anyone gets the teen thing, he does. I can't recommend him highly enough. I realize it's probably a bit of a hike for you, though. Perhaps I can drop him a line and see who he'd recommend for you.
Hi Elizabeth, I probably wouldnt mind driving to Maine for a wonderful doctor but i'm not sure how Jacob would feel about it, plus i think closer to home would be better god forbid he needs to be hospitalized. Dr. Olshan sounds amazing how lucky for you and your son. Since jacob really doesnt talk to anyone other than his immediate family about his diabetes, I think it is important for him to have a compassionate doctor and team that takes a genuine interest in Jacob and his well being. If any names come up in conversation that would be great, no urgency we were just seen this week at Umass. i just dont want to blindly go into a visit and have another bad experience! thanks for your concern! amy
OK, well, I dropped a note to Maryann Waterman, my CDE at PedSpec, and I would not be surprised if she could give me a name or two on Monday. I do know that the Joslin specialist for adolescents with T1 is a woman by the name of Lori Laffel (info here: http://www.joslin.org/phs/lori_laffel.html) because before they agreed to let me work with Dr. Olshan, my publisher tried to get her interested in the book project — she was just too busy. I do not know if she's taking new patients but it's certainly worth a try to contact Joslin and ask.
On another note, have you ever gone to any of the ADA events in Massachusetts? I assume they have Family Link events like the ones up here. It might do Jacob good to attend one and find out how many other kids there are just like him, who "get it" so that he doesn't feel as though family members are the only one he can talk to about his condition—but, unlike a diabetes camp, a Family Link event is just a few hours, so it's more like dipping a toe in the water and not plunging in up to your neck. Who knows, if he likes going to those, maybe the next step would be a diabetes camp? It's important for teens to have peers they can relate to, so if he can't talk to anyone but family, then in addition to finding a better doc, perhaps you should consider trying some of these. The last Family Link event I attended was an ice skating party followed by a presentation that featured a 17-year-old who had undertaken the challenge of doing an Outward Bound program in Washington state, managing his own diabetes with absolutely no parental backup and very little adult supervision. There were a fair number of teens & pre-teens in the audience and I think it may have been inspirational to them. So you may want to visit the ADA's web site and see if you can find anything about Family Link in Mass.