Special Needs

My baby has Tuberous Sclerosis Complex

Does anyone here have this?

It is a rare incurable genetic disease.  It is rarely fatal, but can be associated with developmental delays, and unfortunately due to the early onset of his seizures, may be quite severe.  We are going to be starting some medications soon to help control the seizures.  Wish us luck.  We need all the good wishes we can get.
imageimageimageimageimage 9/07 m/c baby boy @ 18wks, 4/09 m/c @ 4.5wks

Re: My baby has Tuberous Sclerosis Complex

  • Linc is beautiful! GL to you!

  • I agree that Linc is absolutely handsome and unfortunately can not offer any advice. I didn't even know what it was until I googled it. I wish ypu luck with finding the right dose and meds for Linc.

    This is a great group to belong to, keep us updated and welcome to the group. My son Cash has a rare gene mutation and I found comfort in going to the website they had established and saw that they had one for TSC hopefully you csn find comfort there as well as here among your peers.

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  • I have never heard of this syndrome, but my DD also has a rare, incurable genetic disease so I know a little of what you're going through. I am wishing you a lot of good luck. My DD also has developmental delays and we have been working with Early Start (beginning at 2 months). It's a great resource and has been so helpful in helping her reach her developmental milestones. Get in touch with them as soon as possible.
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  •  I have a very special little girl in my life that has this. She has come a long long way. I met her about 3 years ago. She did not really communicate at all and now she has language. It's limited to requesting what she wants and saying "Hi" to those she loves but it is beautiful to hear her talk and she understands so much!  Good Luck to you and your family, there is a lot to take in and hopefully you find all the info you need!

  • I am so sorry you have to go through this. Your little boys is beautiful, best of luck and well wishes to your family.
  • Your son is beautiful! I don't have any children...I'm a foster parent who had a child with special needs and used to work in spec ed.

    I had a 13 year old in my class with tuberous sclerosis. She had seizures and developmental delays. She had been in residential care most of her life and I don't believe she recd the individual attention she needed. I really do feel that had she gotten more 1:1 attention, she would have been more advanced than she was. She was the sweetest, most affectionate child. She connected with everyone around her and giggled and smiled contently. Her medication was adjusted every so often to reduce seizures and communication and toilet training were challenges. I wish you the and your little guy the best of luck with the meds.
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