A year of reflect..My name is Traci and our family is from N.J. My husband Chris and I have five children: one girl and four boys, the youngest are twins. Cayden was was diagnosed with moderate to severe apraxia at age 3. He has been working so hard to overcome his speech and language problem with intense therapy for the last three years. He also has OT for low tone and has done amazing. We had been so focused on him but then Christopher, his twin was diagnosed with HH in April 2012. He had started having complex partial seizures in December 2012. It was during our Town’s Holiday Celebration. It was in front of the whole town. He was rushed by ambulance to the hospital and admitted for six days with abnormal EEG activityand a normal MRI. He seemed fine but then Christopher’s complex partials continued. We eventually started Keppra after another seizure in February and still constantly abnormal EEG studies. But despite all hospitalizations he could not wait to get back to school to see his friends and especially to his teacher, Miss Johanssen. She has been amazing and has been beyond a preschool teacher. She recognized his seizures and immediately made sure he was safe.
Mrs. Johanssen was the first person I called after my mom when our neurologist called us with the results of the repeated MRI confirming my suspicions of HH. This all came about after our school nurse had scheduled an inservice on seizures. Christopher managed to have two at school that lasted more than three minutes. So because he would eventually go into kindergarten from preschool at the school he is has been in, she felt an inservice from The NJ Epilepsy Foundation would be good start. This way the teachers and staff would have plan for his treatment so everyone would be on board. I asked if I could go to the inservice and the school nurse said sure. Although I have been an ER Nurse for over 20 years you need to take yourself out of a role to be a mother. That night I went on the epilepsy website to read up. What I hit upon changed my life forever..I read about gelastic and dacrystic seizures. It all made sense. He had been doing this giggling thing before bed and when he appeared tired. Also when we thought he was nervous and anxious upset this weird crying thing. I continued to read on and eventually found the link to The Hope for Hypothalmic Hamartoma website. I began to read it, and it all made sense. The onset of the complex partial seizure seizures combined what we had been seeing I knew he had HH. I was never so sure in my life. The next day with tears in my eyes I thanked Mrs Nazzaretta our nurse for that inservice as it lead me to the answer of what was going on. I also told Christopher’s teacher.
We had a follow up appointment scheduled with his neurologist two days later so I approached her with my concerns. I requested a repeat MRI with small cuts to the hypothalamic region. We had it done on a Saturday. She called us two days later to let us know what I already knew — that he had HH. Also, when they compared it to the MRI in December it was also there and missed. I had done my homework and called Erica Webster the next day. She is amazing and after all she has been through she was able to help me. I believe Grace is Christopher’s angel. I know she is so proud of her mother helping others through her life and experience.
We were able to see Dr. Rekate the very next week because he had a cancellation. It was a hard consult and as Christopher sat on the floor playing cars while we consulted, I felt sick. Dr. Rekate mentioned the ablation as well as did Erica. Dr. Rekate asked how I knew so much I told him Hope for HH website and speaking to Erica. He had tears in his eyes, and we spoke about how rare this is and how he personally remembers all his HH patients. It was emotional. He talked about the new procedure as well and he mentioned he would be happy to help Christopher but again mentioned Texas Children’s. I told him we had reached out there as well.
We had sent his MRI to TCH in Houston and they called that he was indeed a candidate for the ablation! After speaking with Truzella Benton we secured a consult. We flew down June 11th 2012 and had our consult. We were sold immediately that this treatment may be the way to go.
We had so much ahead of us! It was so overwhelming! Travel expenses, insurance not covering all of it, planning travel, child care, all the things you never think about or about or plan for! It was an emotional time! Our family and community made it happen! It was a very overwhelming feeling to have your child be loved by so many! People wanted to help us and him. I cried to see all the support for him and our family! First a Walk a thon, Candy gram sales, car washes, bake sales, our local fire department helping, our co workers, neighbors, friends and of course our wonderful family! They all made it happen.
With heavy hearts and not sure what was ahead of us we left for Texas the end of July. Then on Friday August 3rd 2012 he went in for the procedure. It was the longest 9 hours of a parent’s life–a very long day. Although the ablation itself doesn’t take very long it is the mapping and planning that takes time. After multiple updates all day eventually both doctors came out with big smiles. Dr. Wilfong with tears saying that they were able to laser the whole HH with no problems! He was optimistic yhat seizures should be gone immediately and then Dr. Curry came out. He waited to see the post op MRI after the catheter was removed. He said they had to heat a bit of his memory circuit area to destroy the entire HH but was confident he did well otherwise! We saw him about 45 minutes later! He had two holes from the frame with bacitracin on his forehead and on the occipital right side of his head dermabond glue holding the tiny spot closed. He was awake and hungry. He then was tired and slept. But immediately seizure free, and his behavior changed. His post op recovery was amazing. A bit forgetful and some weight gain. (An expected side effect of steroids to prevent brain swelling) all resolved about 4 weeks after.
He walked out of the hospital 2 days later. He wanted to eat out that night so we did and the next day after we went to the NASA Space Museum in Houston. He was tired and hungry but never had any pain. Just soreness to the site the next day. One dose of Tylenol and that was it. He has been seizure free and all his EEG’s are now normal. He was weaned off Keppra officially on June 26th 2012.
He has been given a miracle. I just wish in my heart this was available so much sooner. As a RN I know technology and medicine evolves and he was just the right place and right time. I am very thankful for that. We had a very busy last two weeks with our block party and then off to Disney to celebrate his one year seizure free anniversary!
Then he started kindergarten yesterday! The place I dreamed about him reaching last year! It has been a great year and again I am just happy for him. He recovered fully by October last year. His learning has improved and his same teacher stayed by his side all last year again in preschool. We opted to do a half day kindergarten and to see how he did. He has exceeded all his goals and left school already reading a bit and writing!
I hope this treatment will continue to provide others with the same success. I will say again, I do wish this was available years ago. I hope his story will let people know that maybe this diagnosis has hope after all. I have gotten mine back for him. He knows nothing except that he had a special MRI with Dr. Curry and Dr. Wilfong. He can now hopefully have a normal life.
Although I am in a good place now, this is still new and no guarantees except time which had been our gauge. So we take everyday of seizure/rage free as a gift and hope it will continue forever…but so far I am very happy what we have seen. I am optimistic as more time goes on each day. He has been off all medication for 2 1/2 months so far and his 48 hour EEG off meds was still normal. So do I feel as a parent that he is in a good place without a doubt yes. Yet as a parent you never not worry about your kids, so now I try to worry about other things like him not getting hurt playing football or ice hockey. He always looks back and says I love you mommy and I know in my heart we made a big choice for him. One that I will always have to live with. But to this day I will never regret it!!! I hope by doing this at a young age he will continue to have memories of good times and not all his testing and hospital visits. He never complained once and loves Houston. He is now even a Texans fan lol. Hard from NJ to say that lol!
They say it takes a village to raise a child, and this year has really proven to be true. Our family will always be so thankful for everyone who helped us. It is a hard spot to be in, and you never feel you can Thank people enough! I also have to say out of this whole experience we have met so many families and people whom if Christopher had not had this diagnosis I would not have ever met. Their support and the support given to us and Christopher has taught me so much. I look forward to sharing this experience and speaking to people who are affected by this, as many have done for me. You all know who you are our new HH family! Thank you for helping me deal with all the emotions and concerns this past year. And well for Christopher kindergarten on Monday was just another normal day. I like those days again…..