Sandifers Syndrome

Stodre · July 2014

Anyone have expierence with this? I thought my 2 month old preemie has seizures or spasms so I brought her to the ER who told me she's to young for that (it wasn't even her due date at that point) and it was just normal reflexes for a preemie born 2 mos early.
She's now 9 weeks old, 12 days adjusted and has bad reflux. Coughing, gagging, spitting yo, arching back etc...
In researching her big startle reflex for no reason I came across Sandifers Syndrome. It looks just like what she does.

Hiccup15 · July 2014

DS2 is still struggling with bad reflux that was diagnosed when he was 2 months old. I recommend getting a video of her movements to show to her doctor. Does she see a GI? Looking back on videos of DS2, I can see he had the movements of Sandifers Syndrome. I didn't know what to look for when he was an infant so I never brought that up to his GI, however, I did bring up arching his back etc... Is she on any meds for the reflux?

ToastieSimons · July 2014

DS1 had sandifers. We fought with our dr's about. Neuro said it was GI related and GI said it was neurological.

He had severe reflux, spit up a TON (projectile usually), lots of screaming and arching while eating. And that typical moro reflex but exaggerated while eating.

I recommend videoing it too if you can.

What are you doing to treat the reflux? With DS1 his got a lot better when we added in a full dose of prevacid (7.5mg 2x/day) and thickened formula. Enfamil AR was our saving grace. After a while of him getting used to that (maybe 6months) we were able to switch to regular powdered formula with a scoop of oatmeal.

I know you said she was a preemie but i'm sure you could add duocal to thickened formula, or thicken her high calorie formula (if she's on that).

Stodre · July 2014

Thank you for the replies!!
She is on Zantac .7ml three times a day as well as cereal in her breast milk bottles. It doesn't seem to be helping much. She doesn't turn away from a bottle -- actually she sucks it down! But she cries when we burp her, her burps are always wet, she gags and chokes on her spit up, and has been spittin up more. She also coughs throughout the day. Her Moro reflex is usually after we eats, as she is falling asleep.
I'm actually hoping that it's this Sandifers Syndrome and not Infantile Spasms, like I origianally thought!

Stodre · July 2014

Oh .. And yes, I have video of this. I actually had video of it when I brought her to the ER and the neuro there said she's too young to have Infantile Spasms and it didn't look like anything but "normal neonate movements".
Since then her Moro reflex has gotten more dramatic.

Hiccup15 · July 2014

Stodre said:

Thank you for the replies!! She is on Zantac .7ml three times a day as well as cereal in her breast milk bottles. It doesn't seem to be helping much. She doesn't turn away from a bottle -- actually she sucks it down! But she cries when we burp her, her burps are always wet, she gags and chokes on her spit up, and has been spittin up more. She also coughs throughout the day. Her Moro reflex is usually after we eats, as she is falling asleep. I'm actually hoping that it's this Sandifers Syndrome and not Infantile Spasms, like I origianally thought!

We didn't notice a difference with Zantac. Our pedi was not comfortable prescribing anything else so she referred us to a GI. We then started on Prevacid and noticed a huge difference from about 6 months to 18 months.

One thing with Zantac is it is weight based. So once LO gains weight their dose has to be adjusted. It also has to be taken on an empty stomach at least an hour after eating and and they can't eat for 30 minutes after. Although, I have read 20 minutes is O.K. We had such a difficult time with this because since DS2 was in so much pain from the reflux he had a habit of snacking a lot when he was an infant so he would get hungry quickly after his last feeding. So waiting the hour and a half from his last feeding was torture for him, but once the meds were working it got easier.

ToastieSimons · July 2014

Hiccup15 said:

Stodre said:

Thank you for the replies!! She is on Zantac .7ml three times a day as well as cereal in her breast milk bottles. It doesn't seem to be helping much. She doesn't turn away from a bottle -- actually she sucks it down! But she cries when we burp her, her burps are always wet, she gags and chokes on her spit up, and has been spittin up more. She also coughs throughout the day. Her Moro reflex is usually after we eats, as she is falling asleep. I'm actually hoping that it's this Sandifers Syndrome and not Infantile Spasms, like I origianally thought!

We didn't notice a difference with Zantac. Our pedi was not comfortable prescribing anything else so she referred us to a GI. We then started on Prevacid and noticed a huge difference from about 6 months to 18 months.

One thing with Zantac is it is weight based. So once LO gains weight their dose has to be adjusted. It also has to be taken on an empty stomach at least an hour after eating and and they can't eat for 30 minutes after. Although, I have read 20 minutes is O.K. We had such a difficult time with this because since DS2 was in so much pain from the reflux he had a habit of snacking a lot when he was an infant so he would get hungry quickly after his last feeding. So waiting the hour and a half from his last feeding was torture for him, but once the meds were working it got easier.

Zantac was a waste of our time. It worked for about 2 days and that was it. My boys at 4 and 2 are still on prevacid.

have you had a swallow study? Is she sleeping on an incline? I would try to keep her upright as much as possible, bouncer, swing, rock n play. Laying flat is going to exacerbate the symptoms. And I would try videoing the movement you see while falling asleep.

How much rice cereal are you adding? who prescribed this? We went through the gamut with DS1 and ended up Failure to Thrive (FTT) because of terrible advice from multiple doctors. Our pedi was a waste. He refused to prescribe anything stronger than Zantac which multiple GI's have said doesn't work well on babies since they eat so often. We also discussed thickening formula and hypoallergenic formula.

Another thing...you said she is gulping the milk down fast out of the bottle. Is it too fast for her? Are you nursing most of the day and giving a thickened bottle morning and night? Babies digest food really fast. The reason thickening milk/formula works is because it adds weight to the liquid and viscosity. It won't move around in teh stomach as much and wont' get as high into the esophagus. But, EVERY meal needs to be thickened. Not just morning and night to see an actual difference.

If you are nursing, and want to keep nursing then I would suggest seeing a GI doctor. You can discuss syringe feeding simply thick or thick-it. Simply thick is a gel, thick-it is a powder you could add to a tiny bit of liquid. You could give a small dose prior to nursing via syringe. As she nurses the breastmilk will mix with the thickener and stay down better. I wish more people new of this option with reflux babies that want to keep nursing. Instead a lot of doctors just push switching to a bottle and thickening.

Stodre · July 2014

Thank You everyone!!!
She takes almost 4oz of breast milk by bottle (being a preemie she wasn't strong enough to initiate a let down -- and by the time she was strong enough she was already on bottles for 3 weeks) and we add 3 teaspoons of cereal. She sleeps in a swing and is mostly upright most of the time. I have noticed the episodes are mostly during the times she is laying somewhat propped in the boppy - but it's not on an incline like her swing. She doesn't have an episode every time she eats - it usually happens late afternoon and at night.
I never heard the proper way to give Zantac before now!! We just give it to her before her bottle! OMG!! Not sure it would make a difference. It never worked for my son who had projectile vomiting and slept in his car seat for the first four months of his life.
I do have video of her episode today .. And plan on bringing it to her appt tomorrow. My guess is that we will be referred to GI.

JoJoGee · July 2014

Sorry, bump burp.

Hiccup15 · July 2014

Stodre said:

Thank You everyone!!! She takes almost 4oz of breast milk by bottle (being a preemie she wasn't strong enough to initiate a let down -- and by the time she was strong enough she was already on bottles for 3 weeks) and we add 3 teaspoons of cereal. She sleeps in a swing and is mostly upright most of the time. I have noticed the episodes are mostly during the times she is laying somewhat propped in the boppy - but it's not on an incline like her swing. She doesn't have an episode every time she eats - it usually happens late afternoon and at night. I never heard the proper way to give Zantac before now!! We just give it to her before her bottle! OMG!! Not sure it would make a difference. It never worked for my son who had projectile vomiting and slept in his car seat for the first four months of his life. I do have video of her episode today .. And plan on bringing it to her appt tomorrow. My guess is that we will be referred to GI.

I would definitely not give it to her just before a bottle. If she still seems to be in pain ect.. I would push for another med like Prevacid. Also, reflux meds only help with pain. They do not stop the spitting up. I know our pedi and GI made that very clear that we should be watching how much pain DS2 looks to be in. We were told to watch how comfortable he was after eating or how he felt while spitting up. If he seems happy or not noticing spitting up or gurgling than the Prevacid is working.

Stodre · July 2014

I just returned from her peds office. She watched the video and watched my DD reflux twice .. Pool of spit up in her mouth, gagging and coughing.
She believes her startle episodes are due to her reflux, but can't say for sure. She did say that I'm not crazy for always thinking something isn't right!! She also said that theses episodes aren't normal baby movements - even tho the ER told us it was a few weeks ago.
So we have been referred to peds GI. She told me to bring the video when we go. Hopefully putting her on stronger meds stop these episodes. If not she will be referred to neuro for an EEG.
PRAYING that these are related to her bad reflux!!

ToastieSimons · July 2014

Stodre said:

I just returned from her peds office. She watched the video and watched my DD reflux twice .. Pool of spit up in her mouth, gagging and coughing. She believes her startle episodes are due to her reflux, but can't say for sure. She did say that I'm not crazy for always thinking something isn't right!! She also said that theses episodes aren't normal baby movements - even tho the ER told us it was a few weeks ago. So we have been referred to peds GI. She told me to bring the video when we go. Hopefully putting her on stronger meds stop these episodes. If not she will be referred to neuro for an EEG. PRAYING that these are related to her bad reflux!!

So glad your pedi listened to you!

st.augbride · July 2014

Ds had this. Increasing his prevacid made all the difference. He's now 3.5 yrs and STILL needs prevacid (we've tried weaning off multiple times).

Unknown · July 2014

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DanaD1480 · July 2014

Hi. I feel like I am having a similar issue. My son is 3 months old and has had acid reflux issues since he was born. We tried many different types of formula and had him on zantac. About a month ago he started having these strange spasms. I brought him to the pedi and she said they looked abnormal and we should bring him to a neurologist. I freaked out and ended up bringing him to the ER that night. He had a 36 hour EEG where the pediatric neurologist ruled out infant spasms and said that it looks like severe reflux and possible Sandifers. I brought him to his pedi and we switched him to Omeprazole. They said if this does not work we will have to go to the pedi GI. He has been on it for 3 days now and he does not seem to be in pain when he eats or arching his back but every time I lay him down (changing table, play mat, boppy lounger) he flails his arms out. It scares me when he does it and I dread putting him down. Does this seem familiar to anyone? Could it just be a reaction from pain caused by previous reflux? How did things go for you at the pediatric GI?

DanaD1480 · July 2014

Usm123 said:
@DanaD1480‌ Most meds take up to 2 weeks to work at max effect. We see and pedi GI and she was able to play around to get his meds to finally manage his reflux. He has never received a Sandifers diagnosis but we did do an EEG because of his episodes .

I'm glad to hear you have managed his reflux! I will give it some time. Thanks!

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