I hope I'm allowed to post this here (apologies if I'm not, can't remember exactly when I joined!)

Anyway, I've been trying to get a video of Dominic in the evenings to show his paed. Even though he's getting 10mgs of omeprazole in the evenings he's still arching after his last feeding and when he wakes in the night. He also usually has his head turned to the right constantly, he wasn't doing that so much tonight, but it could have been because he was distracted by the camera. He doesn't cry like he's in loads of pain (that's normally real aggressive screaming) but the arching suggests otherwise. Anyway... looking at this, do you think this is a pain response? Do you think it's evidence enough that the drugs that he's on just aren't working for him? Do you think this is Sandifer's syndrome?

http://www.vimeo.com/clip:139036 (http://www.vimeo.com/clip:139036)

Thanks

Well he definitely is not comfortable....It's my understanding one of the reasons they do this is because it opens up the esophagus..and they can breath easier ....I noticed he snorts to does he have difficulty breathing.....And just from what i know here about his age is when the Zantac stops being very effective and the babies are switched to a PPI....be careful of letting him keep his head to the right Jayden did all the time and now has a very noticeable flat spot on his head...could he could have had a helmet to correct it but him mom chose not to. I may be wrong but I think Sandifer's is more of a pull of the ear towards the shoulder along with some shuddering....maybe someone else can be more descript about it...bit I would definitely show the Ped/GI how long does it last?

He doesn't shudder, but usually his head is turned completely to his right shoulder as he's arching. He only does it a few times in this clip I think.

He's on a PPI (omeprazole... same as prisolec I think?) as well as Ranitidine (which is the same as Zantac I think)

How long is it after you give him the evening meds brfore you feed him....we are supposed to wait 20-30 mins.....it really makes a difference...sorry I don't know all the meds names..everyone calls them something different...:smt036

I'm in the UK, hence the difference in names! I wait about 30-45 minutes usually, which is meant to be the best timing for this PPI (apparently!)

well you are doing all your told and he is still very uncomfortable, have your tried to give him a little Mylanta to see if it helps sooth him....how long has he been on this PPI..sometimes they just can't tolerate the med and need a new one...the video is just so sad ..I want to reach in and hold him poor little guy. When does he see the Ped next?

If I'm right, then Mylanta is the same as Gaviscon over here... if that's the case he can't have it after the PPI as it will make the pH of the stomach wrong... also the biggest problem with it is that he won't take it (have to syringe it as I don't bottle feed and the gaviscon is best mixed in with the milk).

He's been on the PPI for a few months now, I've already asked to try something else and she told me that there is nothing else :( I'm going to be asking for a referal to a GI next though (she's a paediatric consultant, not a GI)

Renata, I am sorry your little guy seems so uncomfortable. I watched the video and I think that his reflux might not be under control. You say he is on PPI, Prilosec, but have you tried Prevacid yet? I know it's the same concept, but it works for some people better than Prilosec.
My daughter used to arch and turn her head to the left when her reflux was not under control. So, I think it should improve dramatically and go away completely once you figure out the right drug.
I hope this happens sooner rather than later. Good luck!

If you put him on your shoulder does he respond the same throwing himself back??

My daughter's reactions are/were much much different than your son's but I really don't know what is considered Sandifer's and what's not. He's obviously not very happy though.

I would ask the same question Lena does.

It sounds like he is coughing a bit each time, too. I will have to try it again on my other computer as the speakers on this computer are not so good. It sounds like he is congested, though.

I would have to take another look, but I would say he needs his meds looked at again. I know we heard Sandifers for Iain, but it seemed to all go away once he was medicated properly and began to feel better, so obviously no sandifers here. I am not so sure of what constitutes sandifers but I know IRD has it on the list of things to investigate and load on the site.

On a positive note, your family pics are just adorable. :)

Awwwwwwwww Poor baby :(

I'm actually crying over this right now. I can't help it, it just brought that stuff all back from when Eric was an infant. Not that he is in tons of pain or screaming or anything, but that discomfort, and the snorting, and coughing....sigh.... (honestly I'm not trying to make it sound worse than it really is, it just hit me hard seeing it)

Eric also did the same thing right after his operation in december, right before vomiting all that blood. I had to hold him arched like that for hours.

Eric still arched when he refluxed and while eating even when he felt well. I think just the sensation of food popping up can make them do it, but there was no crying, he would actually smile while in the arched position.
Eric stopped screaming by 2 months old, but I don't think it was because he felt better. I think it was because he smartened up and realized that screaming made it worse, and that Mommy couldn't do anything to help it :( (I could be wrong though)
Anyway,
Sandifers? I don't know. It's definitely voluntary arching, and that's how some sites describe it. Maybe this will help you
http://marci-kids.com/rigidbodyposturing.html
scroll down to the bottom of the page and there's an animation of sandifers to watch.


Does he do this while laying down and without being held?

Does he forcefully push your arm if you don't help him get into that position?

How do you time the PPI and the zantac? They might be given to close together, and if that's the case the PPI won't be as effective.

Oh, poor little Dominic. Watching the video made my heart ache for him - I wanted to cry. Man, I wish we could all post some video of what we think are our children's reflux symptoms, so we could have an even better idea if our kids actions are reflux related!

My ds arches in a similar way; it used to be during and after eating, but now it is at weird times throughout the day. I'm interested to know if this is "Sandifers" or not. Hopefully someone who knows will log on and tell us soon! I hope the pedi will have some answers/solutions for you after seeing it.

I agree with everyone else here, but he is definately not comfortable and I would get getting the meds checked again too. He could be wanting a cuddle to, hence the worsening of the arching on the video, but I wasn't there so I don't know. did he eventually settle down? I don't know about the sandifers, my daughter used to do the head to the right thing all the time, but I think once her meds were under control that all stopped. I hope the pead is more helful and I would try and see a GI if you think it is necessary.

I don't have speakers, but it very obvious he is very uncomfortable. I would definetly speak to the GI about upping his meds or changing them. I don't know if it's Sandifer's, but it could be. My ds has Sandifers and he arches backwards and touches ear to shoulder. He does this during and after feeds, when layed down flat, and even in upright positions. It does appear that he is trying to elongate his esophagus to get away from the reflux material coming all the way up. Once properly medicated these symptoms will get much better and may even disappear. I would definetly take a video to the GI. Poor little guy, just breaks your heart to see them this way. Also have you noticed at night when you lay him in his crib, does he arch and retch and sleep w/ his head turned upward?

PS- Minnie that is a great link!

Awwwwwwwww Poor baby :(

I'm actually crying over this right now. I can't help it, it just brought that stuff all back from when Eric was an infant. Not that he is in tons of pain or screaming or anything, but that discomfort, and the snorting, and coughing....sigh.... (honestly I'm not trying to make it sound worse than it really is, it just hit me hard seeing it)

Eric also did the same thing right after his operation in december, right before vomiting all that blood. I had to hold him arched like that for hours.

Eric still arched when he refluxed and while eating even when he felt well. I think just the sensation of food popping up can make them do it, but there was no crying, he would actually smile while in the arched position.
Eric stopped screaming by 2 months old, but I don't think it was because he felt better. I think it was because he smartened up and realized that screaming made it worse, and that Mommy couldn't do anything to help it :( (I could be wrong though)
Anyway,
Sandifers? I don't know. It's definitely voluntary arching, and that's how some sites describe it. Maybe this will help you
http://marci-kids.com/rigidbodyposturing.html
scroll down to the bottom of the page and there's an animation of sandifers to watch.


Does he do this while laying down and without being held?

Does he forcefully push your arm if you don't help him get into that position?

How do you time the PPI and the zantac? They might be given to close together, and if that's the case the PPI won't be as effective.

AHHHHHH!!!! This is so frustrating. Some articles say it's voluntary some say neurological. If it's voluntary then Maggie 100% has Sandifer's. Not a single doubt in my mind.

I am unablet to view the video at work I just wanted to let you know the omeprazole is the same as losec and prilosec and that the dose would be sufficinet for a 4 month old especially if you are on zantac as well, so I would say that if he is still having symptoms then you could change meds.

There is one it is called zoton, which is lansoprazole, or called prevacid in the US that you could try.

Zantac is ranitidine, and gaviscon and mylanta are similar products, but not the same. You cannot purchase mylanta in the UK. I think they have given you the right advie about the gaviscon, though if you use it, wait at least 2 hours between meds, or it will make the PPI and ranitindine ineffective.

Hi, my little one was doing this very similar arching... not crying, somtimes a suttle moan but he also rolled his eyes backward. Jon Robbie also does head tilting and some rolling of head. I think it looks like Sandifer's. My little guy is a silent sufferer... he doesn't spit up that much. I give him 1 bottle of lactose free formula at night... rest breast fed... elevation of bed. He is improving. Let me know how your little one is doing... looks like meds may need to be changed. I read a case where one baby with sandifer's was allergic to protein mom was eating - diff. digesting... perhaps it? Keep me informed. I have a video of mine doing head bobbing... thanks for sharing your video! lisa

Renata i've watched your video, i'm so sorry....

i know nothing about sandifers so i can't help with that, but we live in the same country so i hope i can lend you some tips....

i read about you use gaviscon given with a feed, so i reckon is baby gaviscon, isn't it?

that is a thing that gps and paed consultant use a lot but only does something on mild cases, as it is a very mild antacid and kind of makes the milk a little less liquid, but you are breastfeeding so i don't see the point....BTW did absolutely nothing for us, and the GI didn't even suggest it...
he told us to use maalox when needed in the way rachel said....
you can get it over the counter, we get it on prescription, but wait for the GI to reccomend it...

You are doing so well by asking for a referreal to the GI...like we were saying the other time.
15 mg of losec is not the max dose and they can try zoton....but that is just something the GI would do...
i found that paed consultants are not very clued up about reflux in the UK, and they drop you this thing of "there is no more you can do" they were doing it with me as well...
i had to insist so much for the referral, like when i asked it was like maybe septmeber and i got it for end of janurary...:violent1:
got back to the gp and claimed i got it earlier...KWIM?
you really have to be on their back unfortunately...as i told you(sorry if i repeat myself...:oops: ) we got "lucky" and bram lost weight so things speeded up....
i think that if i haven't spent so much time without medications (he didn't get any until 13 weeks), weeks and weeks on ridiculos doses like 5 mg of losec maybe bram's eating wouldn't be as complicated as it is now...but who knows...

hope you get what wee dominic needs!:hug:

Wow, I'm overwhelmed by the responses, thank you all!!!

To answer a few of the questions. When he's held on my shoulder, he still arches but screams his proper pain cry, and will carry on doing the arching etc even when he's held close to me, but will get very frustrated if I try and stop him arching. It's actually really difficult to hold him as he's pushing back against me so hard. I put him to bed soon after the video was shot (about half an hour later) and he was on his tummy still lifting his head in the same way crying until I eventually got him settled.

The zantac that he takes is a lunch time dose, so inbetween the two PPI doses. I just find it mind boggling that he could be on so many medicines and still be in pain (I also give him pain killers as well when he's really bad... out of desperation more than anything!). I think that maybe you guys that suggested that it might just be the wrong medicine for him are right... problem being that his paed won't prescribe anything else as she doesn't believe he can still be in pain.

Francesca... Dominic's not putting on weight at all... perhaps that will help our chances of a referral?

I've seen the marci-kids link before, it's excellent isn't it. That's what it looks like Dominic is doing to me, but sometimes it's hard to be objective.

I've seen the marci-kids link before, it's excellent isn't it. That's what it looks like Dominic is doing to me, but sometimes it's hard to be objective.


It IS hard to be objective. But The sandifers, or arching is what got initially the docs to listen in Eric's case. I didn't even know it was a symptom, then I found info about it online, and went "Woe! I thought it was just a weird Eric quirk!"

He did just like what you are describing and would push himself away from me to arch all the time, and when he was on his own he lived in the arched position.

I say whatever the case sandifers or whatever it is. Action needs to happen.

Good luck with what ever comes next

AHHHHHH!!!! This is so frustrating. Some articles say it's voluntary some say neurological. If it's voluntary then Maggie 100% has Sandifer's. Not a single doubt in my mind.

Does Maggie still do this?
I only ask because I think it may be a really good sign that Eric isn't doing it anymore. I thought it was outgrown, ya know like once they aren't an infant they stop arching as much KWIM?
Seeing him do it after surgery, kinda in a way made me feel better because he didn't do it at home anymore. At least not to that extreme. He may position himself a little funny (with his head back) from time to time, but nothing out of the ordinary.

I didn't think that they outgrew it exactly, but that once their pain was adequately controlled they stopped doing it. So I'd take it as a great sign that he's no longer doing it.

I watched the video...It's hard to tell. He does look uncomfortable. My son has Sandifer's and his head tilting and arching looks different, but again, I think each case is different.

He has classical reflux posture though. Cute as a button too!

Oh Renata!!!! I watched the video and just wanted to cry for him. He doesn't look comfortable at all. There aren't any suggestions that I could give you that everyone else hasn't done all ready. I don't know much about Sandifer's so I am of no help there. But it sure doesn't look like his GERD is under control at all. I would definitely consult with the PED about this and show the video too.


Good luck and I am so sorry to see him go through this!

Does Maggie still do this?
I only ask because I think it may be a really good sign that Eric isn't doing it anymore. I thought it was outgrown, ya know like once they aren't an infant they stop arching as much KWIM?
Seeing him do it after surgery, kinda in a way made me feel better because he didn't do it at home anymore. At least not to that extreme. He may position himself a little funny (with his head back) from time to time, but nothing out of the ordinary.

Numerous times a day.... She doesn't do the head tilt so much anymore but she still contorts and stiffens all day long.

Numerous times a day.... She doesn't do the head tilt so much anymore but she still contorts and stiffens all day long.

I'm sorry Lena :(
(((BIG HUG)))

I don't know what's consider Sandifer's...but my DS does the exact same thing...to the point of me almost not being able to hold on to him at times!!! I'm so sorry your little man is so miserable. It's so hard to watch and know you're doing everything in your power...but it's not working. I hope he gets some relief soon!!!

Bless that poor baby;s little heart. I know how frustrating it is to sit and watch your baby be in such pain and not know what to do about it. My Kyleigh has always arched. But lately it is lessening. She was just recently switched from losec to prevacid. maybe that's why. But even when she is not eating, just sitting in her bouncer or car seat or swing she turns her head and looks straight up. The back of her head touches her opposite shoulder. When she is laying her in her playpen she is in the shape of a "C". She looks like a contortionist. LOL. Anyway, seeing a GI specialist I think helps alot because they better understand this problem than the ped. Is he breastfeeding you said? Some things you eat may be making him worse too. I may be wrong I am no expert on that part, I took her off the breast because of thickening her feeds in the beginning. Again I am sorry, it is sad when our videotapes of our babies consists of catching their problems so someone can tell you WHAT is going on. I am thinking about ya hon. Hope all gets better soon. In the meantime give him lots and lots of kisses. http://smileys.smileycentral.com/cat/15/15_2_141.gif (http://www.smileycentral.com/?partner=ZSzeb001_ZNxmk895JHUS)





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