Cleveland (Clinic) Rocks!

As many of you know, my husband and daughters have a genetic disease called tuberous sclerosis complex (TSC). It is a very rare and unpredictable disease which can cause unexplained growths, or tubers, in various parts of the body. Most commonly afflicted are the brain, kidneys, heart, and eyes, and there are also various skin manifestations as well. The severity of the disease varies from person to person, and in our family, we are fortunate to have a fairly mild case. The most severe was an operation to remove a tumor from Glenn's brain in 1994, but fortunately the surgery was the end of it, and there have been no further complications.

The tricky thing with TSC is that many doctors have never heard of it before, and therefore do not understand the best ways to treat it. There are several screening tests that need to be done on a regular basis, and then, of course if something comes up, there are right ways and wrong ways to handle it.

We began addressing the girls' TSC issues in 2005 when Emma had a typical TSC growth on her her big toe. The pediatrician was pretty frank with us and said that she was not comfortable enough with handling TSC. After a referral to an orthopedic surgeon to take care of Emma's toe, she referred us to the genetics department at the Cleveland Clinic, who referred us to one of their neurologists. Lots of referrals going on here, right? We finally ended up with a neurologist by the name of Dr. Ajay Gupta. Dr. Gupta is the coordinator for a TSC "clinic" within the Cleveland Clinic system, with specialists in all areas affected by TSC, and we are so glad we found him.

We have found that Brooke and Leah do have small lesions in their brains that need to be monitored, but at this time do not seem to be growing or changing. They do not affect the girls in any way. Their other organs are fine, but Emma and Leah do have some skin manifestations that need to be addressed, so Dr. Gupta referred us to the dermatologist for the TSC clinic. Dr. Vidimos happens to be the head of dermatology at the Clinic, so I was pretty confident that our needs would be met, but still I was a little worried. When your children are affected by something like this, you want someone to step in and take over, someone who is knowledgeable and trustworthy. We had found that in Dr. Gupta--I am completely confident in his care. But then here we are, needing to see yet another doctor, and I just didn't know how she would respond. The problems that Emma and Leah have are on their face, and I wanted thing to be handled and handled well. Would I need to pull out my notes from the TSC conference I went to three years ago (I brought them with me just in case), or would Dr. Vidimos know what to do?

Our questions and concerns were all taken care of today when we headed downtown for our appointment. Not only was Dr. Vidimos extremely kind, she knew exactly what she was dealing with and how to go about taking care of it. Again, this disease is unpredictable, and while the skin lesions are pretty unnoticable to the untrained eye, everything can change once puberty hits, and this is what I wanted to nip in the bud now, or at least have a plan of attack. Dr. Vidimos offered just that, without me even needing to ask. The girls will actually be having laser treatments, which will hopefully take care of the current issue and prevent any further growths. She is also taking care of the insurance approval and letting Dr. Gupta know what the plan is. Not only that, but she is getting us in next week, when in all reality her schedule is booked through January. This is quite fortunate for us as we will not have to deal with school yet!

I just breathe a huge sigh of relief knowing that we are in such capable hands. This should be a given with doctors, right? I mean after all--they are getting paid the big bucks. But when it comes to a little-known disease and your children, I am just that much more apprehensive. I feel so fortunate to be living so close to the fourth best hospital in the country. I can rest assured knowing that our medical needs will be met with the expertise required.

I'm tellin' ya...Cleveland is THE place to be!