“My Daughter, My Hero”: Young Child Overcomes Multiple Treatments for Myasthenia Gravis

April 8, 2013

It all started in August 2010 when at 10-months old, my daughter Allissondra, started having problems with her eyes. They were turning in to her nose and out to the sides. She was admitted to the hospital in early September 2010 but was discharged after a week of testing.

We had been told she only had a lazy eye and to follow up with an eye doctor. Less than a week later, her symptoms started to worsen. She had the eye laziness (deviation) and now her eyelids were half closed. Her eye doctor refused to see us sooner than her appointment which was still a month away.

We went to her pediatrician out of desperation and she immediately got us in with a different eye doctor. Six hours later, Allissondra was admitted into the hospital again for more testing. She was finally diagnosed with an autoimmune disease called Myasthenia Gravis. They immediately started an oral medication called Mestinon and also started her on a treatment of IVIG.

‘Myasthenia gravis is a neuromuscular disorder. Neuromuscular disorders involve the muscles and the nerves that control them.”

-National Library of Medicine

Allissondra was in and out of the hospital all winter and then through summer for her unpredictable symptoms. She was started on steroids in February due to worsening symptoms and ineffective treatments.

Allissondra was diagnosed with Type 1 Diabetes one year later (September 2011) when she went into Diabetic Ketoacidosis and ended up in the PICU. A month (October 2011) after her diagnosis, she had a Hypoglycemic Seizure and was back in the hospital just days after turning two years old.

Her new diagnosis of Type 1 put a strain on her Myasthenia Gravis, worsening her symptoms. She was admitted into the hospital again in November 2011 for another IVIG treatment. After the week long treatment where no improvement was seen, we were told our next option was surgery.

On December 28th, 2011, Allissondra had a full sternal Thymectomy. They went through her breastbone to remove the thymus. The surgery did wonders for her symptoms, and she was almost completely symptom free the rest of the winter and most of the summer.

Allissondra was readmitted to the hospital in July 2012 for a maintenance dose of IVIG. During sedation for her PICC line, they found an anomaly in her heart rate. She was kept under observation until finally a cardiologist informed us that she had a heart condition and would need oral medication immediately.

Allissondra has been doing decently well since July. She had another Hypoglycemic Seizure in October 2012, but otherwise, she has been mostly healthy. She still endures Myasthenia Gravis symptoms and will be hospitalized again this spring/summer for IVIG.

My daughter is three years old and is my hero. She has gone through more in her little life than most adults experience in their whole lives.

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