Sandifer Syndrome

Hi im Katy, Lottie’s mummy and I would be so grateful if you would take a few minutes to read Lottie’s story. When Lottie was just 7 months old we experience an extremely worrying time with our precious little girl. She began an unusual movement with her head and arm which gradually became worse over the course of a few weeks. We decided to go over to Kettering A&E in which we were told they thought she may be having infantile spasms which are clusters of mini seizures and with this it is a race against time. Our whole world fell apart. We were admitted to the children’s ward and thanks to the quick acting of the Drs they got her in for an EEG scan the following morning which monitors the brainwaves and thankfully it showed that she was not having these seizures… following this were booked for an Emergancy MRI scan which too came back normal, we had a glimmer of hope but we’re still concerned as to what was causing these movements. After the longest 2 weeks of our lives she was diagnosed with Sandifer Syndrome (SS).

Sandifer Syndrome is a type of movement disorder that constitutes paroxysmal spasms of head, neck, and back arching but spares the limbs which mimics infantile spasms hence the misdiagnosis in the beginning. SS is often associated with gastroesophageal reflux (GERD) in children. It is an extremely rare disorder affecting less that 1% of babies with reflux. Thankfully as the esophagus lengthens, strengthens & as the child gets older they do grow out of this condition. She is doing great and showing barely any signs now at 14 months which is why we are able to share this now as our main priority was to make sure we were managing her condition first.

Due to its rare nature many Drs haven’t even heard of this condition let alone new parents. We want to raise awareness of this condition and also raise some money to donate to the Skylar Children’s Ward at Kettering General Hospital. Any donations would be hugely appreciated. Thankyou x

Symptoms of Sandifers;

-Dystonic movement of the neck and back. These are involuntary muscle spasms that lead to repetitive and twisting movements. ...

-Acid reflux. ...

-Hiatal hernias. ...

-Vomiting. ...

-Anemia. ...

-Malnutrition. ...

-Rumination. ...

-Abnormal eye movements. …