Interview with Parents

Do you have any tips for dealing with doctors?

Mom: I actually have 3 tips

1. Find a doctor that is a true advocate. We were fortunate that our pediatrician was steadfast in getting to the bottom of the situation despite several trips to specialists who told us to wait it out as the sickness was likely viral myositis.
2. Come prepared for each doctor visit with questions. For the morning briefing with the panel of doctors, it was helpful to ask about different tests and treatments that we had researched the night before. We relied on the doctors' care, but took time to do as much research as we could.
3. Remember that you have options. When we were discharged from the hospital, we had the option to admit you to a rehabilitation hospital for continued care or to our home. We were scared to bring you home without the on call medical support, but thankful that, in your case, you did better in the comfort of your room. Others may need more support in longer-term care, but remember you have choices.

Dad: The doctors at the hospital will not be an advocate for your child - only you can be. In our case, the neurologists kept pushing back on performing a spinal tap to confirm the diagnosis. They hypothesized that our daughter suffered from everything from fatigue to mental issues. Thankfully, our pediatrician, who had a long history with our daughter, knew it was a serious neurological issue. She kept pushing as did we - taking our daughter back and forth to the hospital as her condition worsened. Finally, the spinal tap and an electromyography procedure confirmed the diagnosis.

Also, it was critical to confirm the diagnosis. We were warned that electromyography would be a painful procedure for our daughter and at first were cautious about submitting her to it. The procedure involves inserting thin-needle electrodes into her legs and then painful electric shocks are applied. Although it was heartbreaking watching her go through the procedure, getting the diagnosis enabled the doctors to begin a standard treatment. Mentally, it also gave everyone peace of mind that we now knew what we were battling. The uncertainty prior to the diagnosis was immensely stressful for all of us. 

What are your tips for how to deal with recovery?

Mom: Remember to take things slowly but do not stop pushing forward for progress. You hated physical and occupational therapy at first (with a lot of screaming in pain), but you made progress each and every day. Parents need to accept help from others and stay strong through personal care (sleeping and eating healthy). 

Dad: After recovery, we noticed our daughter went through subtle but noticeable behavioral changes. She stopped bathing, combing her hair, and caring about what she was wearing - in fact, often she began to prefer wearing the oldest most worn out clothing in her closet. Her tastes in food also changed, our adventurous eater became extremely picky, not only avoiding certain flavors, but she began to dislike sweets. This was challenging because it was difficult for her to regain the signifiant weight she had lost during the battle with GBS without the ability to give her milk shakes, ice cream and other high calorie fats.

Obviously these behavioral changes were a concern us, but we gave her room and focused on being supportive. Eventually, after 4-6 months, her taste for food variety resumed and personal hygiene returned.

Any tips for how to cope with the overall situation?

Mom: Each case is different. Do the research and find an advocate. Do not give up hope. We read so many scary articles during the late nights in the hospital, which is also why we hope this blog provides others affected with some inspiration.