Sterling's Story:
Living with Myasthenia Gravis
by Josette

Sterling was born with what the doctors were initially diagnosing as mild hypotonia (muscle weakness). By the time he was four months old, I could tell there was something much more serious wrong. I had this constant awful feeling that if I didn't keep him glued to me, he was going to die, so I kept him with me always.

He slept with me in my bed so I could monitor his breathing, because at times and maybe, some of you mothers can relate, I could hear his heart beating so loudly, that he could be several inches away and I could still hear it. Every so often, it would skip a beat.

I used to lay him on my chest so he could hear me breath and hear my heartbeat. I asked the doctors to check his breathing and heart and told them my concerns. They told me repeatedly there was nothing wrong. Still, he was still unable to hold his head up on his own at five months and would choke on saliva and formula.

By the time he was 15 months, he still had not taken his first steps, although, I was so happy he could finally pull himself up to standing position holding onto something for a few seconds.

The doctors did recommend physical therapy for the overall muscle weakness, occupational therapy for a little of everything, and speech therapy for very delayed speech. This happened four days a week with still only the diagnosis of hypotonia.

The choking and the aspirating worsened and I pleaded for help from his doctors. They did tests upon tests and still said there was nothing they could find.

Dr. White looked at his throat and said these tonsils have to come out for one. He ordered a sleep study done before sending us onto the pulmanologist.

The results of the sleep study were shocking. Sterling was diagnosed with severe obstructive sleep apnea. He had stopped breathing over 90 TIMES within a four-hour period. (The lab tech said he quit counting after 90 times.) HIS HEART BEAT WAS IRREGULAR!

Next, we went to the pulmanologist, Dr. Graham (our angel), who wanted to do a few more tests after hearing Sterling's history.

They admitted him to the Children's Hospital. After a forty-five minute examination and reviewing his charts, he said, "I think I know what's wrong with him." Dr. Graham ordered an additional sleep study and a ph probe. Diagnosis: gastrointestinal reflux disease and Barrettes esophagus!!!

The reflux disease had actually gotten so bad that it had eroded his esophagus. After additional testing it was also discovered that Sterling's adenoids were so large that they closed off the naso pharynx. The tonsils and adenoids needed to be removed!

Dr. Graham, still seeking to diagnose the many other symptoms, brought in a pediatric neurologist. Within an hour, Sterling was diagnosed with MYASTHENIA GRAVIS, a form of muscular dystrophy. This was a life saving discovery. Had they attempted to remove the tonsils and adenoids, Sterling would in all likelihood have gone into respiratory failure from the sedation.

Now, with the seven medications he takes daily, he can sleep through the night! Our lives have improved dramatically. It was such a relief to finally know what was wrong. Three years of doctors telling me it was nothing but my imagination, to diagnosis, after diagnosis, after diagnosis.

It's so difficult to take care of a child as a single mom, but taking care of a child that is ill is very, very difficult both financially and emotionally because you are solely responsible to provide everything your child needs.