Jack's Experience with Infant Positional Vertigo

     I wanted to share this story in hopes that it may help someone else in this very rare situation.  When all of this was happening, there was very little information out there and the doctors were all baffled by this case.

     One year ago today, Doug and I experienced the scariest day of our lives.  We were temporarily living in a hotel while our house was being renovated due to a flood, and we woke up to our 3 month old son acting very strange.  Jack's eyes were rolling around in different directions (back and forth, to the back of his head, in opposite directions, etc.) and he threw up twice.  We rushed him to Children's Healthcare of Atlanta, and they immediately suspected that he was having seizures.  They admitted Jack and did an EEG, CT, MRI, and hearing test.

     During our time in the ER, we realized that the eye movements only happened when you sat him up or laid him down.  These "episodes" lasted anywhere from 3-10 seconds and he looked very disoriented and uncomfortable during them.  But once the episode was over, Jack was happy and back to normal.  

     In the EEG, Jack was hooked up for probably 4 hours.  We were able to recreate these episodes by laying him down and sitting him up, and it showed no unusual brain activity on the EEG, which the neurologist told us ruled out seizures.  The CT came back clear, he passed the hearing test, and the neurologist said his MRI looked great, despite there being a small spot of blood in his cerebellum.

While we were in the ER, my mom and mother-in-law were in the waiting room and decided to do a little research of their own. They found a forum online where one mom described this exact situation happening with her baby, and it was eventually diagnosed as infant positional vertigo. We told the neurologist about this, and she said she had never heard of it but that Jack's symptoms seemed to fit the description.

Since they had ruled out seizures but still weren't sure what was going on, they kept us there for the night so we could meet with the ENT and Ophthalmologist the next day. The ENT agreed that it looked like vertigo but he wasn’t sure what was causing it because it is so rare at this age (he had never seen it before in someone so young).  The ophthalmologist did a thorough eye exam and said his eyes looked great. He told us that the eye movement is called nystagmus and it definitely appeared to be positional.  They both wanted us to follow up with them within a week, and we were sent home that night.

After we left the hospital, I posted this story on Facebook in hopes that someone we know would have information on this situation.  A high school friend of my husband’s is now an audiologist and told us that she had just seen a case presented at a conference last month of this exact situation- an infant with positional vertigo.  The infant was successfully treated using the Gufoni Maneuver.

I took Jack to a highly recommended Vestibular Therapist, and she actually had the most experience out of all of the doctors with this specific diagnosis. She said it looked exactly like Infant Benign Paroxysmal Positional Vertigo. The youngest patient she'd ever seen with this was 10 months old, until Jack. She showed me different positions and maneuvers to do with him to help alleviate his symptoms.

Jack's first bout of vertigo lasted two days. Two weeks later, he had another bout that lasted just over a week, and it gradually went away. He had a third bout the next month and it lasted two days. Thankfully, Jack has gone almost a year without any signs of vertigo. The doctors assumed he would outgrow it but they thought it could potentially go on for years, so we are very thankful that it seems Jack has already outgrown it.

  At our follow up with the ENT, he told me that he felt very uneasy about Jack's MRI results and wanted us to see a neurosurgeon. Because the neurologist at CHOA told us that the small blood spot wasn't anything to worry about, I wasn't concerned but thought it wouldn't hurt to get another opinion. We found out from the neurosurgeon that Jack has two small cavernous malformations on his cerebellum. He's already had one follow up MRI and will continue to have them yearly for at least the next several years to make sure they don't bleed. These aren't related to the vertigo, but I'm glad we are now aware of them.

Because infant positional vertigo is so rare, there was basically no information available to us. None of our specialists had experience with this, so they couldn't tell us how long it would last, if or when he would outgrow it, or if it would have any impact on his development. So I hope that if a mom or dad finds themselves in this situation, this post will offer a little bit of help or guidance. If you do find your way here, don't hesitate to email me (jminton22@gmail.com) with any questions.

We will always be concerned about the cavernous malformations and their potential to bleed and cause issues, but we are very thankful for how well Jack is doing- he's a perfect, happy, and spunky 15 month old boy!

Jack now- 15 months old