Anyone heard of Sandifers Syndrome.

Comment by Lisa Alexander on July 27, 2009 at 9:36am

Hi Emma,

Nice to hear from you. I don't know anybody else who has a child with Sandifer syndrome as it is so rare. Evie's peadiatrican has only ever had 3 children with it and he has worked in Great Ormond Street and the Royal Alexandra Hospital in Brighton for many years.

Sandifer sydrome is a bit of a nightmare before it is diagnosed but can be quite managable once you understand that it isn't a neurological condition and she should grow out of it. Evie is now on omeprazole and domperidone and hasn't had a dystonic episode since she was first diagnosed and medicated. She still head tilts, but this is only when she is brewing for an illness. Apparently the head tilt helps to lengthen the oesphogus and reduce the acid. She had a barium swallow which showed that she had a really easy reflux but no hernia. I am hoping that when she starts to walk the head tilt will disappear. Her consultant has mentioned fundoplacation if the head tilt doesn't go but we hope that it doesn't come to this.

would love to hear from you to share experiences

lisa

Comment by emma short on July 27, 2009 at 10:44am

Hi lisa,
Im so glad your on here, i saw your post last night and sent you a message. It is a nightmare to live with, we have really been through hell with this. Getting the diagnosis was a nightmare i did most of the research myself, as the doctors also susspected seizures.

Holly started having these head tilting body movements at 3 months old, we are now at 7 months and she is on Omeprazole also, weve also been given Domperidone i have been wary to start it though, How do you find it?

The Pedatrician has suggested More Solids and less formula, Holly is on Neocate too. How old is Evie?

Sorry for all he questions, but it is nice to talk to someone who understands...x

Comment by Julie King on July 27, 2009 at 9:42pm

Hi Emma,

Just read your post and thought I would tell you our experience of Sandifer's. This is my first post here... I joined a couple of months ago whilst trawling the net for more information on Sandifer's and reflux. Our LO, Mia, had what we thought was a seizure at 3 months old. She had been head tilting and back arching for a while but I didn't think it was too concerning and didn't link it to reflux as she wasn't being sick. One evening she had a series of eye-flickering episodes over an hour with each episode lasting around 10-15 secs and coming in every 5 mins or so. It scared the life out of us and we ended up dialling 999. Anyway, we did all the tests in the hosp - eeg, ct scan etc and all came back clear. The hosp paed was completely clueless about Sandifer's and told me her head tilt was down to her being lazy. Anyway, long story short we were discharged from hospital and ended up going back in as she was still tilting her head, arching and pawing at her face and throat. We never got a diagnosis from the hosp but were told that there might be a link between reflux and 'seizure' type episodes but they had never seen it. Like you, we did all the research on this and made the suggestion to them. I didn't get a firm diagnosis of Sandifer's until I saw Dr Shah privately at GOSH. He has seen it all before - head tilting, neck arching, eye flickering etc, so that was extremely reassuring for us.

The hosp put Mia on ranitidine, domperidone and gaviscon. The ranitidine and domperidone both made her extremely miserable and did nothing for her pain and the gaviscon added to her woes by making her constipated. I asked the hosp for omeprazole but they said no. Dr Shah suggested I go dairy-free as still BF and this has made a huge difference. On his advice we stopped her medication (all okay so far) and have just started her on Neocate too. Mia is now 5 months old and now, (touch wood), very happy. So far, no other eye-flickering episodes to date and no more head tilting. She does still occasionally arch her neck in her sleep but am hoping this will subside in time. We have just started weaning but told to stick to bland foods in the meantime. Am waiting for our appt with the dietician.

Sorry for long post but wanted to say I know what you're going through and how worrying it is, particularly as no-one seems to know anything about Sandifers. All we wanted was a firm diagnosis and the reassurance that it's not neurological and the right medication to ease her pain.

Julie x

Comment by emma short on July 27, 2009 at 10:36pm

Hi Julie.

I am so happy about your long post, Holly is on Neocate, However our pedatrician has suggested we introduce more solids and less formula.
She is also on Omeprazole and just started on Domperidone this week...Is Mia on Neocate only with no meds?

Im not seeing much improvement in Holly, she is still tilting her head and arching like crazy. Today has been a nightmare, she cant tolerate the carseat, buggy, etc..without having sandifer episodes.

I have put her episodes on youtube, they were a few months back though..take a look if you have a spare 5 mins..There are four videos, Under the name confirmed sandifers, and episode 1 2 i think. My screen name is emelish74, so you will know they are my videos,

She is also a silent refluxer, so far i think this has been the most difficult thing i have ever had to deal with, it is so nice to talk to someone who understands...i would love to stay in touch, and swap notes with you xx

Comment by emma short on July 27, 2009 at 10:42pm

Julie i am also on babycentre uk, i have wrtten down my worries and frustrations here, and started my own board, the problem is sandifers is so rare, i have 2 members, LOL..again take a look if you have a minute, i know thats hard with a baby, especially a refluxer lol..

http://community.babycentre.co.uk/groups/a2717305/sandifers_syndromerefluxgerd_board

Thanks for getting in touch..xx

Comment by Julie King on July 28, 2009 at 8:53pm

Hi Emma,

Sorry for the delay, it's been a hectic day today. Yes, Mia is just on Neocate at the moment. We stopped the ranitidine a few days ago so I guess might be too early to say if we don't have to reach for it again but so far, so good (she was on 2ml a day). She has been on Neocate for past 9 days and we did have initial problems with getting her to accept the taste but now she is so much better. She doesn't always finish the bottle and might still have the odd retch or two but least she is drinking it! How are you getting on with it? I think i might stop breastfeeding now as sure that some dairy proteins are still sneaking through. Am wary of putting this in writing in case I jinx myself but I can honestly say that we are a million miles away from when she was admitted to hospital. Probably not 100% yet but we are getting there. We have just had 6 good days in a row, Mia is happy, smiling and laughing and a joy to be with. Re the domperidone, we stopped this quite early as she was utterly miserable on her meds. The hosp paed thought the most likely culprit was the domperidone rather that ranitidine. Also, I was cautious about giving her this as I had read that some motility meds can cause worsening of dystonic movements. There is a website which is very informative on reflux meds and how they work and has some info on dystonic movement and sandifers. They also have an animated illustration of what dystonic movements your baby may make - be it from reflux or from motility meds. The link is http://www.marci-kids.com/rigidbodyposturing.html. Had a look at your vids of little Holly and Mia used to do something similar whilst sat in her bouncy chair. She would constantly do what looked like little tummy crunches and wring her hands together. Her eyes would also be watery and red-rimmed. This would go on for ages or until I picked her up. At the time I got very worried and depressed about the whole sandifer's label but I try to remember that it is really just a physical reaction to the pain they are experiencing - albeit a very strange reaction. As soon as you get the meds right, the symptoms disappear.

Another long post!! Sorry. x

Comment by emma short on July 28, 2009 at 10:37pm

Julie, Hi..

its so great to hear from you, its so nice to hear you explain what i am going through. A big concern of mine has been Domperidone. The leaflet says that a side effect is dystonic movements as you described, and also strange tounge movement and twisted neck. Well Holly was doing this to begin with. I have had the day from HELL today. I gave holly domperidone twice today 15 mins before food and her sandifer episodes went crazy.
I feel like i am cracking up, none of the meds she are on are working for her. The Omeprazole is not much better. I left out the 3rd dose of Domperindone as it has made her worse. Im tempted to start weaning her off Omeprazole myself, but i dont want to play around with her medication.

I also feel frustrated with Her pedatrician as she wont change to another PPI, she said the next step would likely be surgery. Ive heard some mums do well with Nexium. However she is ok with the Neocate. She has always taken it no problems...The poos stink dont they LOL. She also has carobel thickener with the neocate which can be quite constipating.
I am so confused i dont know whether to wean her off meds like i said earlier or ring her pedatrician tommorow and insist on a PH probe. Has Mia had one yet.
Im so glad you are seeing results, i am at the end of my tether with all this its been going on since she was 3 months old.
I have been on the Marcikids site before but i havent seen the dystonic body movements, i wil try again.
Did you say you were at great ormand street with Mia. I have been thinking about going there myself if things dont improve. Do you have to go privatley or can you be refered..I just want to stop seeing her in so much pain.

Its been great to talk with you, keep in touch xx

Comment by Julie King on July 29, 2009 at 10:47pm

Hi Emma,

We had a PH probe in the hospital (horrible. I couldn't bear to watch). The hosp said she had reflux but nothing significant and also her ph for acid was normal but it didn't measure alkaline. They didn't really explain more than that so not sure if it is relevant. Dr Shah said he would do this test again after she has been on Neocate for a while and again when I will have to give her normal formula. Am not looking forward to that! We now have a lovely pediatrician who we saw after we came out of the hospital (he was recommended by a friend) and he happens to work with Dr Shah at Viveka. He referred us on and we were lucky to get an appt within a week. I went to GOSH first time round but have the follow-up appts at the Viveka clinic in St. Johns Wood. Luckily we are able to use my husband's private medical as the appts are not cheap (£260 then £200 for follow ups). I think it would definitely be worth seeing him if things don't get better for Holly. I think there was another thread a few weeks back with everyone singing Dr Shah's praises! He also discussed using ketitofen antihistimine if no joy with Neocate only but so far we are still okay.

Sorry to hear you had a bad day yesterday, I know what it is like, it used to really get me down. Hope today has been better. Did you call your paediatrician? x

Comment by Julie King on July 29, 2009 at 11:07pm

Hi Emma, me again! Getting my posts in whilst Mia's asleep. Just wanted to say that I read your recent posting on Babycentre re breathing/excited thing. Mia used to do that too and would have what looks like a panicked look on her face. It was kind of like she was excited but holding her breath at the same time. She was always sick afterwards and I think it her panicking in anticipation of the pain she was going to feel. She stopped doing it for a while whilst on ranitidine (then came back again) but has stopped doing it now. Has Holly been sick through her nose? x

Comment by emma short on July 30, 2009 at 10:24am

Hi Julie, i found a local pedatrician yesterday, she is a GI so i rang her secretary, and she told me she is on leave for a week. So her secretary told me she would get in touch with my pedatrician, and see what could be done. Ive told them i want to go private, as i want her seen too quick, as i cannot cope watching her like this anymore. I am waiting for her to get back to me.
Ive started to cut holys meds down too, as i really dont believe they are helping, i will see how she goes in the next few days. I know of another mum, whos daughter s sandifers was solved by neocate alone.

Holly is a silent refluxer, Although, i know the acid is deffinatley going up her nose, She has also had choking episodes in her car seat. She has been having a lot more of the arm flinging thing to..You know with that suprised look on her face. Its a difficult time as well knowing what foods to give, and what she is going to react to, as her sandifers is not under control its difficult to tell.

You are lucky your daughters is under control now, before you start weaning, finding the right consultant is a neccesity. I hope and pray this next consultant will be good, as london is quite a trek, for us, i cant imagine how we would manage taking holly all that way as she cannot tolerate the carseat, without choking.

Im glad you went on babycentre and had a look, ive logged most of my journals, just incase another mum, finds herself in the same position, like you i did all my research on this myself. I knew it was sandifers way before the doctors told me.

Thank you also for the Marcikids link, ive never seen the dystonic body movements on there before.

Im back to work in a fortnight, I am really dreading leaving holly, as i work nights..I would love to see her better, before i go back, as i dont think family and friends understand how much reflux can turn your life upside down.

Im hoping they do the probe next, i dont want to see her go through the discomfort, but i want to get ot the bottom of this now, Sorry if i am rambling here, its just nice to speak to someone who gets it,

Holly also was strange on ranitidine, she had worse movements, she would contort herself in her sleep, and it loked like invisible hands were around her throat, and she would stretch her neck out as far is it would go.

Thanks for listening Julie, I hope Mia, continues to improve. xx

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