Sandifer's Syndrome
Sandifer's syndrome was named after the neurologist Paul Sandifer and M. Kinsbourne in 1962. They noticed and association to whole body movements and the upper gastrointestinal tract with neurological manifestations occurring in children and adolescents. It is a combination of gastro-oesophageal reflux disease with spastic torticollis and dystonic body movements with or without hiatal hernia. The theory is that the positioning of the head provides relief from abdominal discomfort caused by acid reflux.
Sandifer
Syndrome is considered a pediatric disorder. In the infant reflux world
we consider it to be reflux taken to the next level, a neurological
one. Most
parents get scared to death once they notice it because it can resemble
seizure like symptoms. Please don't panic! This is not a life
threatening event although it can look very concerning. Some symptoms include:
- Head arching.
- Back arching.
- Torticollis and dystonia (involuntary contraction of muscles)
-
The child’s head and neck may rotate to one side and the legs and
feet to the other.
- The child may look stiff.
- May have periods of crying, less commonly they may also go very quiet.
- Dis-positioning of the arms and torso.
- Rolling eyes into, what seems the back of the head (opisthotonos).
- Spasms that resemble seizures.
- Head nodding.
- Breath spells
Sandifer's is considered a pediatric disorder. In the Infant Reflux world, we consider it to be reflux taken to the next level. A neurological one. Most parents get scared to dealth once they notice it (I DID) because it resembles seizure like symptoms.
PLEASE DON'T PANIC!
This is not a life threatening event, although it can look very concerning.
Elyse Kirby Tells Her Baby's Sandifer's Story
I made an appointment with my pediatrician here in my home town, to discuss the spasms and odd head and neck movements I was witnessing in my baby and was hoping to get some answers.
I instantly knew I wasn't being taken seriously, as her response was "Awww, she's looking at the table." I was completely dismissed as being an anxious mother and sent on my way. Something I'm sure most of you that are reading this are a bit familiar with.
A few weeks later, after many more spasms and a really rought night, I took Claire to a children's hospital emergency room and shared my videos. It was then we finally hear the words "Sandifer's Syndrome" and we were sent for testing to rule out other neurological disorders, which of course is VERY important. Just to rule out any conditions such as, epilepsy, infantile spasms, etc. Ours came back normal.
While there was some good news with clear exams, we had to realize that these spasms and contortions were caused by the nervous system being completely overwhelmed by reflux pain.
Sandifer's Treatment - MarciKids Dosing
The most important thing is to get the painful reflux symptoms under control.
The most effective way is to use a Proton Pump Inhibitor (PPI) medication under the guidance of a doctor that specializes in infant acid reflux.
We tried many different ways to treat Claire’s reflux before finding Infant Acid Reflux Solutions and MarciKids dosing. We spent many months trialing different medications and treatments such as Osteopathy, chiropractic work, Craniosacral Therapy, and she continued to get worse. We were desperate and were so thankful to finally find a caring group of doctors that helped get Claire on the right track.
Please book an appointment with the Infant Acid Reflux Solutions team to start a plan for your Sandifer’s baby or connect with me in the Facebook group if you have any questions.
Picture of Claire about a month and a half after starting Marci dosing (a baby who I could never put down, let alone be on her tummy!)
Additional Sandifer's Syndrome Resources
Sandifer’s Syndrome: a Misdiagnosed and Mysterious Disorder