tuberous sclerosis

[angie789]

I live in fort walton beach  my daughter is 3 and she was just diagnosed with tsc. I am trying to find out as much as I can but no one here knows alot. she has 4 noduals on her brain and she has the ash leafs on her back and legs. Will she get worse with the skin lesions?  I read you can develope autism is that at anytime of life?   She has had 2 seizures the second one was last week. That was when she got diagnosed.  They put her on cepro anti-seizure medicine does this help or prevent? I am a scared parent trying to find out all the info. I can.   thank you. angie

[BeccaBoo1983]

I am a 29 year old mother of 1. I was diagnosed with TSC when I was 2 years old after having a grand mal seizure. I think I lead a pretty normal life. The doctors back then did not know what it really was. They told her I would not live past 12 or 13 years, but now here I am. TSC is a genetic mutation I do know that. My mother is not the carrier of TSC. Not quite sure about my father as I have never really had a relationship with said father. I see a neurologist regularly. I also have a regular doctor, a dermatologist,and a urologist. I have had said laser surgery to remove skin abrasions on face, but it is not a permanent thing. At least it was not with me, but it does help. I do have epilepsy as well,and I have skin lesions such as the white skin patches the skin tumors on internal organs as well as angiomyolypomas on my kidneys. I also have the skin tags,and tumors under fingernails and toenails. Although I did not develop those until later in my teens. I have also gotten support from the TSC alliance. They are a great group and I usually find answers to my Tuberous Sclerosis inquiries. Take care and god bless you and your daughter. I know its hard with this but having strength will get you through this. Believe me I live with this disease everyday.

[Dr Santos]

How are you? How is your daughter? For individuals with TSC, the prognosis depends on the severity of symptoms.   Those with mild symptoms generally do well and live long productive lives.With appropriate medical care, individuals with the more severe form can look forward to normal life expectancy. In addition to the benign tumors that frequently occur in TSC, other common symptoms include seizures, mental retardation, behavior problems, and skin abnormalities, which may take some time to develop. Surgery, including dermabrasion and laser treatment, may be useful for treatment of skin lesions. It is important that your daughter be regularly monitored by her doctor. These links may be helpfu:
http://www.ninds.nih.gov/disorders/tuberous_sclerosis/tuberous_sclerosis.htm
http://www.tsalliance.org/
http://www.tsctalk.org/
http://www.aafp.org/afp/20000201/703.html

Take care and joining tsc support groups will provide the much needed strength that will carry you through. I know it's very hard for a mother to see her 3 year old be afflicted with any disease. Take care and God bless. Kisses to your daughter and keep us posted.