Sandifer Syndrome Help

This is my first post on the site so sorry if it goes on a bit. You might want to get a cup of tea first..lol

My Little girl was born in August last year by emergency section due to her being breach. She needed to be resuscitated for a few minutes and her APGAR scores for very low so she was taken to SCBU (Special Care Baby Unit) to be monitored.

Within a few hours she started with some abnormal movements which they quickly diagnosed as neonatal seizures and began her on Phenobarb to control these but they continued and was put on Phenytoin. She had an EEG and MRI done as well as full bloods and everything came back as normal apart from the EEG showing a couple of unusual movements.

After 6 weeks in hospital she was allowed home and was still being treated for epileptic seizures which had not stopped.

She was getting increasing difficulty to settle and started with the back arching/Screaming/etc. All the usual reflux symptoms. Our Ped put her on gaviscon and domperidone to start with which did very little so omeprazole was added which has eased things slightly.

At this point we were told to keep a diary of all her seizures and it suddenly clicked that all her seizures were happening during or straight after a feed.

We discussed this with our Neuro consultant who mentioned sandifers so we had another EEG performed while she was feeding and luckily she had some seizures while on the EEG and the results all came back as being perfectly normal. Everyone was a little confused at this point.

Daisy has just been in for a 24hr PH study doing which we are waiting the results back.

Daisy’s seizures/movements are VERY subtle and she will stiffen her head to one side and her arm stiffens litterly for a couple of seconds then back to normal again. her eyes also flicker slightly sometimes.

We are pretty convinced that we are dealing with sandifers now and not epilepsy seizures.

Daisy is also very delayed in her development. She is 6 months now and is not holding her head up straight on her own yet and not really grabbing for objects.

She is due to go for another MRI just to make absolutely certain they have not missed anything the first time round.

Has anyone else had a similar experience to us at all?? I know upon reading some other stories there are some very similar symptoms to what Daisy has.

I look forward to hearing from you.

Matt.