Luke's Tuberous Sclerosis Page
Madison's Story |
 Our daughter, Madison, is almost 3 years old. She was diagnosed with TSC one week after her first birthday. Like Luke, her seizures looked like she was straining or pooping her pants. But they continued, so I really thought they were probably seizures. Her pediatrician wasn't certain they were actually seizures, so he had us do an EEG. It came back normal, but she was still having them. We were sent to Lubbock Tx, (we live in Midland) to a neurologist who could tell by the many white spots on her body that she probably had Tuberous Sclerosis. Needless to say, after a MRI and renal ultrasound, we did have a diagnosis of TS. Madi has the complex-partial seizures. She has been on several medications and currently on two. We have yet to control them completely. We have been taking Madison to the Scottish Rite Hospital in Dallas for over a year now. We have been truly blessed by them. We are seriously considering the ketogenic diet. Don't know if it will work, but I feel like we should do everything we can to help her. Madi has a big sister, Megan. She is 5. We don't believe she has TS, no spots. My husband and I were tested by CAT scans and ultrasounds. Nothing indicating TS. Megan is a big help with Madi. They sure do love eachother. We are blessed. We sure do have our ups and downs. Some days I am real positive, then others I'm down. I do pray alot for strength. I know God gave us this special child for a reason. I'm so happy that He did! She has developed normally, despite the seizures, but lately seems to be falling behind in her development. We are looking into special education programs in our area. Hopefully we can get her a little help before her kindergarten year. If you would like to correspond with Madison's family they can be contacted at Min14mad@juno.com This home page is intended to be a family resource for families affected by Tuberous Sclerosis. It does not intend to constitute medical advise. Viewers are warned not to take any action with regard to medical treatment relying on the information provided on this page without first consulting the patient's physician.
Deanna Runyan-Wall E-mail address: deannadawn@lukets.org Last updated: April 5, 2008 Created: December 5, 1996 |
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A SPECIAL NEEDS MOM BLOG JOYFUL & JUGGLING
WATCH LUKE'S FOOTBALL TOUCHDOWN ON INSIDE EDITION
LUKE'S Tuberous Sclerosis LIFE STORY
A MOTHER'S JOURNAL of Accepting Tuberous Sclerosis
PRACTICAL FAMILY RESOURCES |
