Roller Coasters

While in the hospital, B started to have more trouble with his stomach. I called the pediatric GI from my hospital room, and when he returned the call he was far more concerned with why I was calling from the hospital (and why was my family not taking the role of caregiver to the baby while I was in?). After he got B’s information down, and told me he’d change the formula and to come by to pick it up the next Monday, he asked why I was in.


He was more than alarmed and explained to me that infants can have a form of MG if they are born to mothers with it. B definitely fit the profile of a myasthenic baby and I needed to let the neurologist know. So, I called the neuro who said that his trouble swallowing was, in part, due to the MG as were the eyes that would not open. The antibodies are out of the baby’s body by 6 weeks and we are probably not seeing any more residual effects, but rather whatever is the cause of his delays. However, he said he wanted to apologize for thinking me to cold and uncaring when I was so sick I could barely move. As a neurologist, he felt bad because he should have been able to spot it. Hind sight, he realized he was looking at a myasthenic in serious condition sitting in his office. For that, he deeply apologized.



I stayed for 2 more days while they played with dosages and made sure I was tolerating it well. They discharged me with an Rx for Mestinon, and had even called around to find a pharmacy that had it in stock. That was my first cue that this is an awfully rare disease.

We got home and things seemed so utterly normal. Able to chew, dress myself and walk seemed so normal. It was kind of odd to fight with something day in and day out for well over 2 years and yet, it feel so normal when it was gone. To this day, the MG feels odd and never normal, the strength feels ‘normal’.

The Tuesday after I got out of the hospital we took B to see both the pediatric neurologist and the pediatric GI doctor. In between visits, they’d had a chance to talk and when we met with the GI doctor, we were told they wanted to admit B to the hospital for testing.

April 6, 1992 we took B to the “Pink Palace” a local hospital, not the one we normally dealt with. The irony of it’s nickname of a palace was not lost on me … no amount of pink could mask that they were about to make my son incredibly uncomfortable.

He was admitted and a “Child Life Specialist” came into the room to explain what we’d be dealing with. She explained the tests we were having done “Polysomnogram” included 5 different tests and would continue waking and sleeping. (Poly =5 and somno = sleep gram= test). They would take him from us and have him go through yet another EEG. Then they would sedate him, do an EDG and place a tube from his nose into his stomach. There would be a piece of tape on the tube so that it could be measured to ensure that the tube was staying in place. He would also have leads checking for heart and pulse the entire time, and a pulse ox on as well as running an IV during part of the time.

Shortly after, the doctors came in together, and made sure we understood what was happening. We were told that during the next 3 days at some point they would be drawing us out of the room to take Infant/Child CPR. Up to that moment in time, it is one of the scariest things I’ve ever been told. Something was so wrong with my child that I would need to know CPR. I also did not understand how I was supposed to absorb all of the information.

They came and took him away and after a couple of hours brought back a very alert baby. They were somewhat concerned because they could not seem to sedate him fully, but even more bothersome, they never heard him cry. As the girl laid him down, he started going “eh eh eh eh” and I told her that was his version of crying. That, alarmed them. (though trust me, not as much as it did me!)

They gave us a picture of him with EEG wires attached. I sat down and held him, and stared at the picture for about 2 hours. A nurse came in and said they needed to feed him while a certain test was being run. So, they handed me a bottle, while the nurse evaluated everything that was going on. She kept writing on the EKG lead … and then, as usual when the feeding was over I pulled the bottle out and he decided to show the nurse what the cause of all this was ..he threw up all over me, all over her and all over her shoes.

We lasted the 72 hours on the testing. We managed to get through the Infant Child CPR classes, but during that class, I kept tearing up. I was fighting crying. I knew I needed to hear everything that was said. We had no way of knowing this at the time, but it would not be B that we needed this information for!

They asked if they could monitor him one more night. While the doctors were in the room, my mom called. S had 105 fever. They decided to forgo the extra night and send us home. We got home from the pink palace to turn right back around and take S to the ER at another hospital. The primary care doctor had been told by the specialists what was going on and he met us at the hospital.

Samuel had another ear infection. He’d had tubes put in his ears in January, but one of them had turned and was causing an infection. It isn’t a normal complication, but apparently did happen. The primary doc called the ENT and he came up the hospital to remove the tube and scheduled S for a replacement in the morning. We spent the night at that hospital, S had the tube replaced and then we went home. All told 5 days in the hospital with 2 children in 2 hospitals.

I had arranged a follow up appt at the medical school. The doctor that they had me see (resident rather) said that her goal was to get me off the medicine as soon as possible and that she felt the surgery was not called for. She said I was much too young to have that drastic of a surgery.

I left very confused because I’d been told that the medications I was taking were not like some meds, they needed to be taken and unless I went into remission (which I’ve never done) they would be taken for a lifetime. They had also told me the thymectomy was being done because I was under 30. If I’d been over 30 they would not be able to do that surgery. (they now do thymectomies regardless of your age).

I called the neurologist that they’d had me see in the hospital who was more than happy to take me on as a patient. I would be his 7th Myasthenic in his practice over his career. (which doesn’t sound like a lot, but it is a lot for a neurologist in a non medical school setting). Since then, he’s had over 20 with people coming from all over the state to see him. It’s been 18 years and I’m still with him.

I went into see him and we brought B with us. He became fascinated with him because he didn’t ‘look right’ . I told him what was going on and he gave him a cursory exam (more out of curiosity than anything, also looking to see if there might be some connection to his issues with mine beside the neonatal MG). He did not say much, other than he was sorry and he understood how difficult it was to have a child with issues. (I found out later that his son had had a stroke at birth …just 8 months before B was born.)

He gave me a neuro exam and he watched me walk. A series of ‘tests’ I’d go through every 6 weeks for several years to come. He made some adjustments on my medications and got me scheduled to go see the surgeon that would be doing the thymectomy. Dr M (yes, this does make the third Dr. M .. family, pediatric neuro and neuro were all Dr. M) said he’d see me in the hospital June 1.

The next day we met up with the surgeon. A FOUR hour wait in the waiting room left me worn out and tired and realizing that leaving the house without my Mestinon was not a smart idea. By the time he saw me, I was having trouble breathing and walking. The doctor asked how far away we lived. Told my husband I’d be longer than that, to please go home and bring back the Mestinon. He did, when he brought it back, they gave me some and then proceeded with the testing. By the time I left his office, I was exhausted, but feeling better than when he’d first called me back.

On the way home from his office, I told D that I needed to see my Dad before the surgery. We decided to take a trip to California to see my Dad. The idea of having my chest cut open was leaving me scared. I needed the familiarity of my father, and my home.