Shining Epilepsy Star – Theresa Romeo and Ryan
Shining Epilepsy Stars: Theresa Romeo (mother, advocate, and speaker) and her son, Ryan. Theresa Romeo is a mother and epilepsy star in all that she has done for her son, Ryan, and for the Dravet’s Syndrome community. She has used the short amount of time she has available to her to do wonders for epilepsy, working with the Northeast Regional Epilepsy Group to teach and talk about Dravet’s syndrome, the ketogenic diet and epilepsy through a YouTube video which is now also on TV. For this reason, she is this issue's Epilepsy Star and we salute her.
Tell us a little about you, your family. How did epilepsy come into your life?
My name is Theresa Romeo and my son, Ryan had his first seizure when he was 7 months old. His symptoms were typical of Dravet’s Syndrome but there was such a lack of knowledge about Dravet’s that doctors were not able to diagnose him. By the time Ryan was 15, we arrived at the Northeast Regional Epilepsy Group. After a battery of tests, Dr. Evan Fertig, epileptologist, suggested we have a genetic test done via blood test. Through this test we were able to determine that Ryan had been suffering from Dravet’s Syndrome this entire time and he was finally been able to get the help he so desperately needed.
Tell us a little about Ryan's life with epilepsy and some of the treatments tried
Since Ryan was a baby he has had horrible, uncontrollable seizures. He has been on several different drugs in an effort to try and combat the seizures but with little to no advancement. In fact the anti-seizure medicine would often make Ryan so lethargic you wouldn’t be able to recognize his true personality. It wasn’t until Dr. Fertig determined it was indeed Dravet’s that we began to wean Ryan off of the myriad of drugs and start him on the Ketogenic diet (like a modified Atkins).
How has Ryan responded to the Ketogenic diet?
He’s doing great! Its so wonderful for him to be taking less anti-seizure medicine. He is his more authentic self on the diet. And he is so great at staying on top of it. Surely, every now and again he will want to eat something that is not ok but we all struggle with that from time to time. He remains strong because he realizes how great his life is now with having less seizures. His body utilizes the fat and protein for energy. Ryan understands this and sticks to the diet like it’s his job!
What have some of the biggest challenges been to be the mom of a special needs child?
You’re invisible. Growing up Ryan and I would both be treated differently: teachers, parents, etc. When you have a child with special needs people tend to stay away from opening up conversations and befriending you. Maybe they feel awkward and don’t want to say the wrong thing. Either way, it’s terrible to feel so lonely when you need so much support.
Not too long ago, you volunteered to do a filmed testimonial about your son's Dravet's syndrome and the ketogenic diet. That film is now on YouTube and has also been shown on TV-what moved you to do this?
After realizing that Ryan had Dravet’s Syndrome all this time without anyone even knowing to test for it, I knew that I had to get the word out. Other parents could be sitting at home with so many questions, unable to find the right mix of meds to help their child when maybe they should be requesting a genetics test be performed. I don’t have a great deal of time to volunteer and what not. We do what we can, when we can but I knew this video was important to get the word out that there is hope and there are solutions! Ryan is an amazing success story and if it can happen to him then its possible for others as well!
Why is it important for you to get the word out to other patients and parents?
It’s important to have all the information possible when you are trying to solve a problem like this. Unfortunately, Dravet’s is not a very talked about syndrome. More patients, parents and even medical professionals need to know about this debilitating disorder so that future patients can have all the available treatment options. Only when you know the problem can you find the solution so if parents and patients know to check for Dravet’s, they may be able to start a more accurate treatment plan sooner.
Recently Ryan participated in the Epilepsy Life Links Yoga program with specialized yoga instructor, Anjali Jacoby. How did Ryan respond to this treatment? Is he interested in more programs like this?
Ryan loved it! It is an activity that he could participate in and it relaxed him so much! When you have special needs it can limit some of the activities you participate in. Anjali was able to modify his yoga practice to make sure all positions were safe and that he would be able to replicate them at home. We are both very interested in the Wellness Program and realize that the more you put into your own wellness the more you get out of it. Patients with epilepsy have a tendency to stay home and avoid activities but it is so important to get out there! Live your life with your epilepsy! Stay social! Stay active! Participate! We look forward to continuing with the yoga program and any other programs fit to Ryan’s interests.
What plans do you have for the future and epilepsy?
We definitely plan to remain connected to the Northeast Regional Epilepsy Group, Epilepsy Life Links, the walks, the Purple Pumpkin Project, the Wellness Programs. Wherever I can find my niche and be a useful addition to helping those with Dravet’s and epilepsy in general, I certainly hope to contribute.
