Tuberous Sclerosis (TSC) Support Group

Do you have TSC? My son is 2 and 1/2 and has TSC.

I don't, but my twenty-four year old brother does. Severely, and with autism and epilepsy also. How severe is your son's TSC?

Well...he's so young it's hard to tell, but he has 100s of tubers in the brain, 1 in the heart (there used to be 4), one in each eye (one on of which is on the optic nerve), a few of the red skin things, a bunch of the white skin things. He is mainly non-verbal. He does say a few words but mainly when really pushed to do so. Like "more" "milk" "peez" (please). He does say MAAAA MAAAA on occasion and DA (for daddy) on occasion. We actully go to meet with the school system next week to see about getting him tested to see what offical label they will give him. He so sweet and loving. He's really a doll. (He's the youngest of three) How is your brother? I love to hear how older people with TSC are doing....hopefully he is well and happy. That is my biggest dream for Joe is that he is happy and well!

I have a myspace page www.myspace.com/heatherandthebaird... I have a ton of pics and videos of the kids up there.

The link to our page isn't working..I think because there is a . at the end of it...Let me try again.

www.myspace.com/heatherandthebaird...

Keep me updated on how Joe's tests went, I'm interested in hearing. The pictures are adorable--it looks like you have some really great kids! :)

Forgive me, I know no technical names for really anything that goes along with this disorder--so I'll do my best in describing my brother! Zach is almost completely nonverbal--he makes some noises once in a while to express anger, frustration, happiness, etc...We're at the dinner table, he can say "MA, MA" and points..that means more food, please. :) There are other ways he communicates with us which we have learned to understand and respond to. Zach has had tumors throughout his body off and on, beginning with one in his heart--right now it isn't appearing on the MRI scan, and hasn't for a few years now. About five years ago, we went to Cincinnati and had a brain tumor the size of a golf ball removed--the doctor used a new method of extracting the tumor, used some sort of balloon-instrument to open the brain apart to cause the least amount of trama as possible. Surgery went beautifully and Zach suffered from a remarkably less amount of seizures. I believe I know what you mean when you say "red and white things"--on the face? Zach's face is covered with them--red little bumps, most severely on the bridge of his nose and cheeks. We've been told that they are of no harm to him, but are definitely something to keep an eye on. I know it makes it difficult for my parents to shave him. Zach also develops growths on his toes, underneath the nailbeds--looking at them, they are extremely noticeable and look to me that they are getting so large that it might be uncomfortable to wear shoes. We're not sure why this happens, but again..they have so far not been harmful to Zach, but is something we have looked at the regular yearly check-ups.

Zach went to a special school near our home until the age of twenty-one--he was around others with disabilities and disorders similar to his, but there was not another case of TSC in the school. For the past three years he's been going to a day camp for mentally handicapped adults. I'm pretty un-impressed with the camp and don't feel that they have the proper amount of teachers for how many people attend the camp. I also don't feel as if they do much during the day besides sit around and watch TV. As I said before--un-impressed. There aren't many options, though, it seems...it's terribly frustrating. But he seems happy on a day-to-day basis. He smiles, he laughs. Ah, I forgot to mention! He also has a respite-worker come to visit four hours both on Tuesday and Thursday to take him out into the community. They go swimming, out to eat, run errands--ANYTHING, just so long as he's out in the community and interacting with others. It's something we've been doing for as long as I can remember, and it's been a really great thing for him.

I did my best on explaining--hope it's been somewhat helpful. If you have questions, I'd be happy to ask my mom about it.

Thanks for sharing. It sounds like yall take good care of him! I sometimes wonder what will Joe be like when he is a grown man. That is the stinkiest thing about it...You just never know! I'm not good with technical terms either...LOL. Joe is starting to get the red bumps on the face (nose area) and he has the forehead plaque things...One on the side of his head kinda under the hair line. Everyone always says, "O my gosh did he bump his head?" LOL SO you saw our MySpace page? Yeah! I put all kinds of stuff on there. I love it. It helps our family all over the place kinda keep up with our daily craziness with three kids. LOL

Joe has got a new therapist coming today! He already has a music therapist and a speech therapist. This is an additional one. She does Brushing Therapy. We think Joe has some sensitivity issues...like he drags his face on the carpet on occasion and if he gets excited he'll slap you in the face. Not mean, just doesn't know how to express himself. When did yall start the person coming to take your brother out? I've never even heard of that. For now, Joe is pretty good when we go out. I take him everywhere of course...I have gotten ugly comments at Wal-mart. I was waiting for a guy to mix paint and Joe ran off and I had to go catch him. Then when we got back he was rolling on the floor and laying there. He likes shiny cold floors. He even licks them on occasion. I think I have broken that habit though. So anyhow, the paint mixer man says, "How old is he?"

I say, "Two and a half"

The workers says, "You think he'd be learning to behave by now wouldn't ya?"

WHAT????!!!!

Luckily I am a very calm girl. I just looked at him and said, "Well, one would think, but he is handicapped. He has this thing called..."

I then calmly and slowly explained all his medical problems, his tumors, his possible autism....

Then I said, "So that is why he is rolling on the floor....I do wish he did behave better, but I'm doing the best I can."

I think the man wanted to crawl in a hole and die. LOL

Thank you for sharing, also! It's interesting and helpful to hear about other people's experiences with TSC.

We've had a respite worker come to take Zach out for (approx?) fourteen years. One man, Dave, came for about twelve of the fourteen years--he and Zach became really good friends. It was extremely upsetting and difficult to see him leave the respite establishment--he'd bettered many people's lives in his time working there. Zach has been going out with a new guy for about a year now. We know he still has a good time going out and that it's important for him to do so--but it just isn't the same without Dave..he was so good with Zach. Respite care is definitely something I suggest looking into. I know that for my family, we get so many hours of care a year that is funded by the government. It's a really great thing for the child--they get out into the community, interact with others, learn--and it gives the family some down time to relax!! It might be something that'd be beneficial for Joe and for your family...I'd check it out!

As for the Walmart guy--I think eventually there comes a time when you just get used to the stares, the rude comments. You have to. Those people just don't understand what an amazing person your son really, truly is....and that's no loss to anyone but them. Ignore them. They deserve no explanation.

How did the brushing therapy go? And did you have the tests done?--Any results yet?

Hi my name is Rachael and i also have a 3 year old with tsc he was diagnosed when he was a year old it has been really difficult for my family and sometimes i dont know how where going to make it through all these trying times but we keep our chins up and hope for better days .

Hi Everyone,
My daugther's name is Kari. She started out pretty much the same as I am hearing her. She was normal for the first year, but then some infantial seizures and then later mental delays. But I recognize now she was such a gift to us. Such a strong teacher. If you would like I can share much more. Just know..by chance, not the disorder/disease that caused her to pass over but she simply had an accident and choked on an orange slice at an outing in the park. However, from her passing we learned so much about what she actually knew that we thought she did not. She communicated with us on in her last days in the hospital and also afterward. She is back in heaven as a child, happy and gleeful. We understand now she came her to teach others humility. This crosses some people's beliefs, but for us we have tons of evidence and are writing a book for parents, like us, to know just how special, brave and strong these seemingly helpless children/adults are. So you were selected to be the brave parents and siblings. Be proud of that and share your experiences with others.
Lance, Kari's father.