Annie has Sandifer's Syndrome

June 6, 2008


It's been a long six weeks for Miss Annie. She has been struggling to eat the entire time. I saw a lactation consultant on Tuesday who said that Annie did not know how to suck. That explained half of her problem and we now know why breastfeeding was not going well. Annie still had some really strange head gestures, rolling her eyes back, and constant crying. She also wanted her binkie constantly, which was problematic given that she doesn't know how to suck. The LC also said that we should keep reflux in the back of our minds. Between the LC and another mom in our breastfeeding class, we started teaching Annie how to suck and switched her to soy formula to help with reducing gas. We visited Dr. Lisa this morning and she confirmed our concerns.

Sandifer's sounds much worse than it is and she will outgrow it. I included the information from the website the LC gave me. I think we just assumed that since Annie was not constantly spewing like Emma was that she didn't have reflux. Annie is on Zantac - same as Emma was - and we've been referred to First Steps (http://www.in.gov/fssa/ddrs/4964.htm) for some therapy for Annie. They'll come to our house to assess and help with the feeding issues as well as physical therapy to work on her neck.

It's been a stressful six weeks but we are hopefully headed in the right direction. The LC has me trying some herbs to boost milk supply so we'll see how that goes. We'll keep everyone posted.

SANDIFER'S SYNDROME AND INFANT GERD

RMacLean
January 2007

WHAT IS SANDIFER'S SYNDROME?
Sandifer's Syndrome is described as spastic ¹torticollis and ²dystonic body movements found in infants and children and associated with Gastroesophageal Reflux Disease. Sandifer's syndrome is commonly mistaken for seizures but thankfully, has no neurological basis whatsoever. Usually you can tell the difference between Sandifer's and seizures as Sandifer's syndrome symptoms will generally appear after feeding time.


WHAT ARE THE SYMPTOMS OF SANDIFER'S SYNDROME?

* Nodding and rotation of the limbs
* Neck extension
* Gurgling sounds
* Writhing movements of the limbs
* Severe ³hypotonia
* Seizure like appearance and apparent altered mental state
* Torticollis

The child may have a sudden rotation of the head and neck to one side and the legs to the other with a stretched out appearance. Typically, the back is arched backwards with hyperextension of the spine. Elbows may be flexed and held backwards with hyperextended hips. During the posture, the infant may become quiet and fussiness will generally start as the posture lessens.

True Sandifer's syndrome is not to be confused with the regular type of back arching that is common in babies with reflux and GERD. It is quite common for babies with reflux to arch their necks and backs in a backward position but this type of back arching is quite different than true Sandifer's syndrome as it doesn't include the above mentioned postures as well.

WHAT CAUSES SANDIFER'S SYNDROME?
It is thought to be somewhat of a defense mechanism some babies develop in effort to cope with the pain of repeated acid reflux. It's been suggested that tilting the head to one side is an unconscious effort to reduce reflux episodes or simply provide relief from discomfort. Esophageal manometry has also shown improvements in peristalsis (gastric contractions) when the head is tilted. It's also thought that this posturing may help to clear acid from the bottom of the esophagus.

HOW IS SANDIFER'S SYNDROME DIAGNOSED?
Parental report of symptoms may be enough to diagnose Sandifer's. Some parents report taking video tapes of their child's posturing to their doctor and receiving a diagnosis in this manner. If seizures are suspected an EEG and/or CT-scan may be performed to rule out the possibility of seizures or other neurological abnormalities. As well, a ph-probe may be conducted to positively identify acid exposure to the esophagus.

HOW IS SANDIFER'S SYNDROME TREATED?
Treating Sandifer's syndrome must be done by treating the underlying cause, the baby's reflux or GERD. Once a successful treatment regimen is put into place for the child's GER, and the baby begins to feel relief from the discomfort and pain of acid in the esophagus, the symptoms and thus, syndrome will diminish with no long term side effects.

¹ a twisting of the neck to one side that results in abnormal carriage of the head and is usually caused by muscle spasms -- called also wryneck
² disordered muscle tone
³ low muscle tone