Aug 29, 2012 • 4:36 AM
Welcome to the list, I hope you will find what you are looking for here! It is scary dealing with this, more so alone I'm sure. Hope you and your daughter are overall doing well.
Cristy
Aug 29, 2012 • 11:58 AM
Hello, welcome to the list. This list is a great support resource, I hope you'll think so too.
0 ReactionsAug 29, 2012 • 12:00 PM
Welcome!! TS is overwhelming for everyone, that is for sure. Consider reaching out to your community for additional support. We recently moved and have had great success with our county developmental disability agency. We now have a speech therapist coming to our home each week and over the summer we had a tutor. There are so many other things they can help with. They can help with co-pays, or gymnastics class or respite care or modifications to your home etc. Our county support person even attending our daughter's IEP meeting! And it's at NO COST to you.
Stay strong, as Madelyn needs her Mom :)
Best Wishes~
Tomasean
Aug 29, 2012 • 12:09 PM
Welcome to the group. I found these wonderful families in my time of need. The families that are on here have become like my family and my support thru all our tough times. My son Alex just turned three and was diagnosed two years ago 10/1. It's been a rough journey this far but with the right support I think it's better. One thing I have learned is that all these families on here have experienced something that my family has gone thru so they all understand and can support or give advice when needed. If you needed anything ever just post we are always here.
0 ReactionsAug 29, 2012 • 1:07 PM
Hi Amanda,
Finding people who understand the issues you have to address living with TSC is always a huge help. This site can be a good tool for getting a variety of experiences but also for getting that unconditional support as well.
Where do you and Madelyn live? There may be a local Community Alliance that can offer additional opportunities for meeting other families and connecting with people. They can also be great connections for identifying resources specific to your area.
If you are a FB user you may want to join groups there like the Tuberous Sclerosis Alliance or you can definitely get a number of us to accept friend requests! It's all about how comfortable you are connecting and how much information you want to get.
My son, Griffin, is almost 15 years old so I've been connecting with TSC affected families in a lot of ways for a lot of years. I've found that there is no single source of all the information and support - it really helps to have multiple connections ~~ after all we are dealing with a complex and highly variable disorder! You will find that there are people around the world that can connect and provide insights and support.
Continue to arm yourself with the latest information and seek the support that other families can certainly provide. Great progress is being made in understanding TSC and in being able to head off or treat the manifestations. You can have great hope for Madelyn's future and maybe ease some of your fears.
Debora Moritz
Griffin's mom
Aug 29, 2012 • 5:22 PM
Hi! Thank you so much. I am very grateful to each one of you that replied..,i live i kodak tn but travel between knoxville sevierville and kodak. The closest clinic to us is nashville (TS clinic). Is anyone near my area? Madelyn has recently started headstart but her teacher has suggested she is too far behind the other children for her to learn much so shes connecting us with someone who can work one on one with her. I have made flashcards of numbers and shapes and colors that I am dilligently working on,with her.. I guess my biggest fear is that when she gets to school some kid is going to call er retarded. She is such a beautiful and strong sweet little girl and she makes my life worth living. She gives me a reason to smile and wake up everyday. I just cannot believe that her father could ab an don such an amazing child. ( thats all ill say on that..) I hav wc my good days where I try not to worry about the things I c anno tcontrol (like what could happen to her health in th e future) but somedays I feel overwhelmed and like im not the best person mom in the world. All I do know is that child is my world and I will do whatever I need to to give her the best opportunities she can have. I refuse to give up. My facebook is facebook.com/amandaeliese. I would love to get to know some of you and have some support from someone who really knows what were going through. Best wishes to you and your children.
0 ReactionsAug 30, 2012 • 1:39 AM
Hi Amanda,
You sound like a very kind person and a WONDERFUL mom! Madelyn is lucky to have you, and you her. As earlier stated, TS is very overwhelming, and I'm sure that it must be very difficult doing it alone........... I hope that you consider yourself alone no more. This site will provide you with good information and support. I do believe there are people here who go to Nashville, so I hope they reply. Welcome to the site!
Laura
Aug 30, 2012 • 9:45 PM
Hi Amanda:
Welcome to a great site. The people here are really fantastic. There is a wide variety of parents/caregivers, folks with TSC, siblings of those with the disorder, grandparents etc. The point is that there are so many different perspectives with countless experiences that there is rarely a shortage of individuals who can't relate in someway and offer up their best advice.
I've found posting to be somewhat therapeutic. Almost like a diary or journal that just so happens to write back to you with many of the answers one seeks when answers are at there hardest to come by. You won't always find the answer here, but there is always someone here to lend a sympathetic ear at the very least.
TSC can often be so frustrating and so overwhelming, but sometimes just hearing that you are not the only person that has been in your position can ease some of that loneliness just knowing some one understands you.
I can see that you are still pretty young, ( I wish I was 24) and there is nothing wrong with asking questions that are less about TSC and more about life.
Best of luck you and your daughter,
Aug 30, 2012 • 9:49 PM
Also, take what I say with a grain of salt, for I am not technically a "TSC Mom".....for everyone knows that the moms, both on this site and around the world, are the ones who know best ;-)
0 ReactionsAug 30, 2012 • 11:35 PM
Hello and welcome to this support group. This Is a very good place to be connected to.
0 ReactionsAug 31, 2012 • 12:44 AM
In reply to Daddyoftwo's comment
DaddyofTwo makes a very good point...................You must have a sense of humor when living with a chronic disorder. And you must remember to appreciate the joy that your daughter brings. TSC can take up a lot of time and energy but not all your time and not all your positive energy.
Thanks Daddyoftwo for reminding us all to "smile". :)
Aug 31, 2012 • 3:23 AM
Hi amanda, I just found this site today myself. I'm glad I did. I have had so many questions about afintor and segas and its nice to know i can find answers here. I live in Va. My son Jared was diagnosed at 15 months old, he's 11 now. I cant imagine having to go through this alone. I'm here if you need a shoulder to lean on :)
0 ReactionsAug 31, 2012 • 10:11 AM
Welcome. Feel free to friend me and ask any questions. My daughter, Freya, is 3 with TSC 2 and we live in the UK and have just been to Cincinnati to see the specialists there.
Catie
x
Aug 31, 2012 • 11:49 AM
Hi welcome. I am not a parent with a child with TSC. I was a child with TSC, now a
Parent. I am 49. I have had TSC since the age of 6 months when I was dx. I can maybe
Help you answer questions from both ends. I have found alot of support myself on
This site
Aug 31, 2012 • 11:10 PM
Welcome. It can definitely be a hard time dealing with this disease. My son was dx when he was 15 months. After the first few months we were used to the chaos of dealing with tsc. What I would suggest is to try and be as clearheaded as you can be. Realize that while having tsc is hard, it is not the end of the world. With strong support and a strong will, your daughter will be ok. Remember that her victories will come, but they may just be a little delayed is all. Remember to take a little time for yourself when you can. If that means having a hot bath after she goes to bed, take it. You and your daughter will be better for it.
0 Reactions