ZiZi's Story: Panic at 23 Months

On April 20, 2009 ZiZi woke a little later than usual. Ani had already gone to school and my mom was over to take care of ZiZi so I could work. Zi woke up crying (not uncommon given her wet diaper every morning) so I went up to get her. I leaned over the crib and saw something that freaked me out. Her forehead was swollen, and I mean SWOLLEN. Think Worf from Star Trek: The Next Generation.

Panic
I called my mom who also gasped and said, "That is really odd." So we called the pediatrician, fed her breakfast, and took her in. By the time we got to the pediatrician's office her head swelling was down to 1" x 1". Our fantastic Pediatric Nurse Practitioner (we had switched to her after the doctor who missed the "failure to thrive" situation) asked a lot of excellent questions and called in the physician for a consult. We only then, when being asked questions to assess the situation, noticed that ZiZi was losing her balance. Not only that, upon reflecting, we realized that for the prior two weeks ZiZi had been more "clumsy" than usual.

In an abundance of precaution we went downstairs at the hospital for an Xray. While we were in the waiting room her balance was so poor that she dropped to her hands and knees, fussing because she couldn't stand up and keep her balance. When she was crawling she looked up at me and fell over as well. That was it. My poor baby who had worked so hard to walk could no longer walk and was falling over while she crawled as well. I started freaking out.

The next few days are a blur and yet seared in my memory. There were two visits to the pediatric ER at VCU's Medical College of Virginia. There was an MRI. We consulted with a doctor about the possibility her hip (she had always crawled a little funny on the one hip) could be a contributing cause. We consulted with a neurosurgeon about the results of the MRI. He said the MRI was read as normal but that he saw something in a temporal lobe. However, that should manifest as seizures, not as ataxia (losing your balance). That did NOT make me feel any better.

We consulted with a neurologist who then set her up for more tests and put her back into physical therapy for a few weeks so she could get a thorough assessment from the physical therapist. The swelling in her forehead would come and go and her ataxia would come and go. The physical therapist saw the same thing we were seeing and wrote up a lengthy report for the neurologist. Just for fun, here is a short excerpt:

Zoe has had 6 weeks of PT where during four of those sessions she was noted to have significant balance issues resulting in her inability to stand without support, walk across a room, kick a ball, catch a ball, pick up items off the floor and return to standing, and walk up and down the steps safely and without support. During all 6 sessions, the PT repeated many of the same games and skill tests to determine if it was the skill that was the problem or if it was Zoe’s balance issue that made it hard to complete the task. It was determined that on the 4 weeks where Zoe had a very difficult time keeping her balance during any task including PT, it was not the task that was the issue but whatever was causing her to lose her balance. During the 2 weeks where Zoe had minimal to no issues with balance, She was able to complete all the above mentioned tasks with ease and more than 10-20 times each without support and without falling. This PT concludes that Zoe’s trouble with balance that has her family so worried and is affecting her daily play and life is not due to an issue that is correctable by PT at this time. There seems to be some underlying cause creating these issues with balance and swelling of Zoe’s forehead. The PT at this time refers Zoe back to her pediatrician and neurologist for further consultation.

The months of April and May for the year 2009 were the worst of my life. I was still traveling two days a week for work and constantly worried that my baby could succumb to whatever bizarre thing was going on in her body and slip away entirely. She was working so hard for minimal progress in speech therapy and then suddenly she lost her ability to stand still. It was dramatic but the answers were slow to come.