After dropping my oldest off at preschool, I walked home to our apartment. The baby had fallen asleep in the stroller, so I left him there to nap in the entryway of our unit. When he woke, he was screaming. It was not the volume of it that made my heart skip a beat, but rather the quality. He sounded just like his older brother did at this age. It was a cry that was part whimper, part pain. I knew this cry well. However, I had never heard it from the baby. I dropped my coffee on the floor and ran to him. Sure enough, even with the straps of the seat buckles snugly against his chest, the shaking and the arching of his back was undeniable.
I couldn’t get him out of the stroller fast enough. I felt an immediate sense of panic and confusion when I saw him. He was frozen just like his older brother. But he did not have his brother’s condition. We were told that GERD was causing a rare neurological response called Sandifer’s Syndrome in our older son. Sandifer’s causes tremors with arching and twisting of the back. We were told he should outgrow it by age two. But, he did not, and he was still struggling.
What concerned me now was our new baby did not not have the slightest sign of GERD. How could he have Sandifer’s Syndrome and not GERD? I picked him up and held him. He was stiff as a board. He was shaking. He was confused. He was scared. He was in pain. He looked at me for help, yet I knew there was nothing I could do. I sat on the step holding my screaming child and just cried. “No, no, no, not you too. Please, not you too,” I prayed. I prayed so hard. But, I knew it was no use. My heart sank as I looked at my baby and I knew he was wondering why mommy wouldn’t help him.
That afternoon when I picked up my toddler from school, the teacher asked me to hang around so she could talk to me. I immediately wondered what he had done. Did he hit or push some one? I thought maybe they wanted me to work on grabbing. Did he have an accident? He was a rambunctious three year old, so I was imagining all the age appropriate issues that could have arose. I was not expecting the actual reason for the meeting.
The teacher was loving and serious. “He is cognitively right on track,” she told me, “We are not worried about any developmental delay issues at this time.” I just looked at her. I couldn’t help but wonder, If everything was normal why were we having this conversation? “Ok,” I said, “so what’s wrong?” She had a serious but loving look on her face as she explained, “It’s his legs. He keeps falling. More than what is typical for his age. He says his feet don’t work. He seems to be in pain.” I explained to the teacher that he had bad foot cramps sometimes. It was a recent thing and we were not sure what was causing it. The doctor thought it was probably growing pains. I stressed to her that he was in pain and I was sorry. I didn’t realize it had gotten so bad it would affect him at school. She was sweet and asked what they could to to help him. “Nothing,” I said, “Just make sure he is not at the bottom of the slide or some place he can get hurt. Otherwise, just hold his hand and wait it out.”
I got home 45 minutes later. It should have taken 10 minutes, but my four-year old couldn’t walk. Things were going downhill fast and I was scared. Really scared. I watched my little boy lay on the sidewalk and cry. “Mama, mama, make it stop. Why don’t my legs work. Why won’t you help me mama!?” He was scared too. I tried to carry him but he was heavy and his body was stiff and stuck in an awkward position. His leg was turned in and bent at the knee. His other leg jetted out stiff and straight. His back was arched and stiff. He was unable to change his position and putting him on my hip was impossible. I had his backpack, the stroller and his baby brother who was freaking out in his seat arching and screaming too. The fear and helplessness I felt that day is impossible to describe. I sat on the sidewalk, holding my three-year old with one hand while I tried to comfort the baby with the the other. Once the episode passed we would make it 100 feet and then we would do it again. All I could think the whole way home was, “What is going on!? Why is this happening?!”
My afternoon was filled with my boys screams and pleas for help. But, I could not help. So the three of us sat in my bed and we all cried together. At various points my oldest would ask, “Mama, rub my feet.” And I would. Every time I was met with a frustrated, “No mom! Do it like daddy!” I had no idea what dad did, I mean, how many ways are there to rub a foot? When my husband got home our son was still crying over his feet and it was the first thing I talked to him about.
“Hon, you have to show me how you rub his feet,” I demanded. “I don’t know, I just rub them,” he said. He seemed confused that I would need such direction. “Just show me. Okay!?” I insisted. He walked over to the little feet that were being presented to him. “What part this time?” He asked. My little boy was crying too hard to answer and just pointed. My husband nodded and instinctively tilted the foot back at the ankle then rotated the foot outward 45 degrees. He pulled his big toe back and pressed between his first and second metatarsal. He then dragged his other thumb over the arch of the foot pressing firmly into the muscle.
Instant relief! The cramp was still there but this was helping. In a few minutes his crying stopped. “What the hell!!?” I exclaimed, “How in the world did your figure that out!?” It seemed the only logical question. His reaction was one of surprise. “What do you mean!?” He asked looking confused, “What do you do when your feet do this?”
“Wait, what!? Your feet cramp like this?!” I asked looking at him bewildered. We had been together 14 years and I could not believe this was the first time I was hearing this. “Yeaaaaah,” he said slowly and apprehensively, “yours don’t?” I was shocked. “NO!” I yelled. “What is going on! You have the same thing? Why didn’t you tell me?” I was so confused. We’d been struggling for years and I was upset this was just now coming to light. My husband knew exactly what I was thinking. “But I don’t arch and twist and vomit, he explained, “I can’t imagine foot cramps and GERD are related.” I told him about the baby…and his new symptoms even though he did not have GERD. “Something’s going on,” I said, “This is not normal and I don’t think it’s just Reflux.”
Over the next 30 minutes my husband and I discussed all the ways he felt twitching and cramping. “How long have you been like this,” I asked. I was still in disbelief. “As long as I can remember,” he said after a minute of thinking. I was now feeling sad that he had been in pain and discomfort for so long. “Honestly, I can’t ever remember not being like this. I always thought everyone else was the same, to varying degrees,” he said. You could tell he was absorbing this whole situation. “We were told all his symptoms were from GERD and that he would outgrow it,” he said gesturing to our son, “I never put the two things together. Honest. Not one person asked me if I had twitches or cramps. It never occurred to me that his GERD and my foot cramps were related!” He looked dejected and sad and it made me feel sad too. But I knew he was right. My husband often moved funny. Especially in his hands, legs and neck. We had a running joke because sometimes he was pigeon toed and couldn’t walk normal and other times he was fine. We both found it odd that his legs randomly twisted in. The more I thought about it the more I realized that I too had failed to connect my son’s symptoms with my husband’s. My boys seemed undeniably more severe and so identifying their specific movements was easier. I hugged my husband, “Your are not normal,” I said, “Something is wrong with all of you. I’m calling the doctor in the morning. We need a referral to neurology.” He nodded in agreement and we each picked up a child and carried them to bed.
Walking down the hall I looked at my husband. I smirked at him and said, “You know, I always knew there was something wrong with you.” He chuckled. But then his smile turned serious and he said, “I really hope I have not given this to our kids.” And with that, we all crawled into one bed together and we snuggled our crying boys to sleep.