The story of Holly
We were living in Okinawa, Japan, where my husband was stationed. While I was getting a regular pre-natal check up they noticed an irregular heart beat. They in turn gave me steroid shots to develop the baby’s lungs because they thought they would have to induce labor. I began to get the baby monitored and then 2 weeks later I went into labor. They never checked to make sure everything was ok with her heart. At her two month check up I had brought up that I felt something was wrong with her and they said I had post pardom depression. I said I did not and asked about the lesions and loss of pigment spots on her skin. She said it could be indicative of Tuberous Sclerosis and she ordered some tests. She had an ultasound done on her soft spot and they saw a SEGA (benign tumor) Some doctors said she could not have one at her age. We left and went to Tripler Army Medical Center in Hawaii and there she was diagnosed and started having infantile spasms. After being on sabril they stopped. We moved to California where she began receiving therapies to try to get her on track. After her first birthday she had a partial complex seizure that lasted half an hour and had to have medication to get her out of it. She was still delayed a litle bit. We moved to Georgia where we now reside and she started up her therapies again. She was behind in speech and started that as well. Her neurologist said that she needed to be on medication for her tumor or operation, She also stopped taking all seizure medication. After nothing being scheduled about her tumor we went to Tennessee to get a second opinion. He reccomemded same thing but ASAP. She started taking medication to shrink it that make her sick so she had to stop. She had brain surgery in September of 2017. She recovered fast and started talking a lot more after the tumor was removed. We also found out she had cysts on her kidneys and a small tumor. She also has on in her eye that was misdiagnosed by another doctor. Today she is 4 and doing incrediably well. She hasn’t had a seizure in over a year and we love her new team of doctors at Lebonheur. I hope this helps to know that things do get better and there is support out there and if you ever feel like things aren’t right with you or your child’s healthcare, always go with your gut!