Reflecting on my daughter’s first experience with IVIG therapy

Note: This column describes the author’s own experiences with IVIG therapy. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

Our family learned the gravity of words when our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 15. Those four little words weighed heavily on us as we tried to imagine what Grace’s life would look like in light of this diagnosis.

Although the condition has no cure, we were soon given the good news that treatments are available. This was music to my ears. I exhaled for what seemed like the first time in months.

Our community is blessed to have medications, such as Firdapse (amifampridine), approved specifically for the treatment of LEMS. Many rare disease communities cannot say the same. But medication alone was not enough for Grace.

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Firdapse improved her abilities tremendously, but she still fought serious fatigue. Grace continued to fall often due to muscle weakness, and she was still very limited in her ability to walk.

We needed more.

The doctor suggested Grace try intravenous immunoglobulin (IVIG) therapy in light of her continued severe symptoms. We were told it would be administered over two six-hour days at our children’s day hospital.

As we prepared for Grace’s first infusion, many people in the LEMS community told us the most common side effects were headaches, flu-like symptoms, and fatigue.

Day 1

We were told to keep Grace hydrated throughout the procedure, so we began pushing fluids the day before. As soon as we arrived that first morning, the nurses began prepping Grace for the infusion.

First, they gave her Benadryl and Tylenol to preempt any allergic reactions or headaches. Then they began the difficult task of running her IV.

The nurses quickly realized her veins were not cooperating. After four attempts, they decided to use a guided ultrasound in order to hit her vein.

Due to Grace’s age, the nurses ran her infusion very slowly. Overall, we were there for about seven hours the first day.

At the end of the day, Grace decided to leave her IV in overnight so they wouldn’t have to run a new one the next day. The nurses wrapped her arm in gauze and sent us home for the night.

The only side effect I observed that day was extreme fatigue, which I assumed was from the Benadryl.

Day 2

The next morning, I woke Grace in time to take her morning meds. She was fighting a pretty severe headache.

Normally she starts to notice her Firdapse working about 20 minutes after she takes it. On this morning, she called me back into her room more than 40 minutes later and said her medication still hadn’t kicked in.

Overall, it took more than an hour for her medication to take effect. That was quite unusual, but we attributed the lag time to the IVIG fluids.

Our second day at the hospital was much easier since the nurses didn’t have to run another IV.

The following days

We noticed Grace was pretty lethargic for a solid three days after IVIG therapy. During this time, she fought sporadic headaches and had less energy than before.

Then, miraculously, four days after the infusion, she got a burst of energy that lasted about three weeks.

IVIG definitely made a difference. However, the ups and downs she experienced in terms of energy, strength, and side effects eventually led us to seek an alternative treatment.

Overall, IVIG was a huge blessing for Grace. The therapy flooded her with good antibodies, reducing the damage to her body and helping her fight common illnesses. Although we eventually pursued another treatment, we’re grateful that IVIG jump-started Grace’s body back toward better health.

Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenic syndrome.