STARS US

My name is Regina Faught and I’m writing this to help other parents and children. My son Landon, the youngest of five, has Neurocardiogenic Syncope and suffers from Reflex Anoxic Seizures. This feels so good to write because for 15 months we did not know what our baby was suffering from.
During his first vaccinations he lost all color, became limp and disoriented, breathing stopped but he recovered very quickly on his own. We knew it was not your typical reaction to a shot but we figured he was so young and all babies are different. At 9 weeks old Landon became sick, it being a Sunday we had to take him to an Immediate Care Center. The nurse laid the baby down and he became cyanotic. As he cried his breathing seemed to stop and he turned blue. 911 was called and he was put into PICU. We were told lots of different possible ailments; Tracheal Mylasia, Acid Reflux, possible cardiac problems, Asthma, Pneumonia, Croup, Cystic Fibrosis.
Together with our pediatrician we began to notice how complex Landon’s situation was. A lot of small things began to come together. He was a horrible sleeper, sleeping only 1 ½ hours and only if he was sitting upright. We could not lay him flat or he would fuss then panic and start to turn dusky. He couldn’t tolerate heat. He was always sweaty. He was always constipated. His color always seemed pale or dusky. He would have lots of small blue episodes we call “spells” usually brought on by an injury, excitement, a sudden fright, or regular daily crying. These “spells” did warrant a few hospital stays but they were always blamed on his congestion (Landon was always congested). While in the hospital he was placed on breathing treatments and sent home. Although they did improve his breathing we knew something was not right. We looked into metabolic disorders, we were sent to neurologists, cardiologist, pulmonologists, you name it we saw them. We were told Landon was a “breath holder” and has allergies. The allergies we were sure of but felt it was deeper and more serious than just allergies. And Landon’s always loyal pediatrician agreed.
When Landon was 12 weeks old he had his first seizure caused by the cold air after a warm bath. As my husband and I watched we felt helpless and terrified. Landon became still, turned blue very quickly, I tried to stimulate him to breathe, his eyes became fixed, his body became ridged his arms and legs stretched straight as a board. We were at the end of our rope, not knowing what to do or where to turn. With the help of STARS and our pediatrician, Landon was able to see Dr. Blair Grubb a world renowned specialist. We packed our van with hope and desperation and traveled from Chicago to the University of Toledo to meet with Dr. Grubb. Landon was given every test under the sun which helped Dr. Grubb make his diagnosis in October, 2008.
Now Landon has a chance at a normal life, a better quality of life. His episodes come in bunches, he is usually disoriented afterwards and then falls into an unnaturally long deep sleep. We have found that keeping him well rested, well hydrated and as healthy as possible lessens the frequency of his “spells”. When he has a cold he can have several episodes a day and rarely does a day go by without at least one. But thanks to a great specialist, Dr. Grubb, there are options for Landon. Just educating ourselves on what goes on inside Landon’s body helps more than anything. We learn to recognize the triggers and avoid them, which gets harder as Landon grows and like a typical toddler is into everything. It has been a long road, and Landon has rolled with the punches. He is a sweet loving baby that melts everyone’s hearts.
STARS led us to Landon’s diagnosis. We are forever thankful. I remember reading one of the case studies on their website, tears running down my face because I felt it was our life that I was reading and there was, for the first time, hope. We could help him!! STARS and Dr. Grubb gave us the answers and direction we needed.
One good thing has come from this, we can tell Landon how many people truly loved and care for him, his family, our extended family, his dad’s fellow firefighters, his pediatrician. All have left a permanent imprint on our hearts.
The Faught Family