Sandifer Syndrome Help

[Anonymous]

Hi Everyone,

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.

[hellbennt]

my son had Sandifers. Once he was on the right dose of medication it went away.

I am not a doctor but I have been on this board for seven (&!) yrs now & I know that there are babies who need a higher dose of PPI

this is information overload but

https://www.infantreflux.org/forum/forum_posts.asp?TID=6026

read through here & also, from here, look for PREVACID 101

there’s a LINK to the marci-kids dosing chart in Prevacid 101

dashing out the door-

hang in there!

[Anonymous]

Hello,

All I am Daisys mum and to add to my husbands comments above……..Daisy has really poor head control and delayed development does anybody have hope for us that this will improve with the right meds or surgery!?

x

[hellbennt]

proper medication (PPI), proper DOSE of PPI and proper ADMINISTRATION of PPI will help. Physical Therapy should help, too!

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