Sandifers Treatment

[Anonymous]

My DD is now 9 weeks old. She has GERD, dysphagia, MSPI, and diagnosed colic. She’s on Neocate thickened with rice (we’re in the process of going back to thin liquids for most feeds, though, and she is doing well) and the MARCI dose of Zegerid. She is displaying some posturing that has me wondering if she has Sandifers. After eating for about 30 seconds, she arches (almost to the point of looking like a horseshoe) and turns her head to one side. She moves her had back and forth, too, so I have to chase her with the bottle to keep it in her mouth. She is swaddled during her feeds to help her stay organized so I haven’t observed any strange limb movement, but while burping, she bucks back a lot by pushing on my legs. She is also very rigid and tries to stand up quite a bit. She only exhibits these symptoms during eating. I plan on seeing her dr. this week to help with dx. I’ve had 3 kids with GERD and all of the other issues, but never Sandifers. My others did fine with PPI treatment. She doesn’t have a feeding aversion (my other two developed that) so the behavior is odd to me.

My question is this: if we’re on the MARCI dose, giving Mylanta PRN, and doing all we can, how can we get rid of these symptoms? We tried Prevacid but she seems to be intolerant and is hysterical all day. She hates taking the Zegerid/Mylanta, but isn’t miserable all day with it. How can I get her “happy” and treat this syndrome?

[hellbennt]

hmm…I would contact dr philps, of marci-kids (helped create zegerid) and ask him?
and tell us what he says

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Dr.
Philips:

[email protected]

Office Phone: (573) 884-0672

hellbennt2010-07-08 11:53:16

[Anonymous]

I sent him a message tonight. I will definitely share what he has to say. Thanks!!!

[Anonymous]

I know your post is several months old, but my daughter had Sandifer’s as an infant, and I was wondering what happened with yours. Did you figure out if it was Sandifer’s, and if so, were you able to get her to stop? If you still have questions about Sandifer’s, perhaps I can help you.

I hope you have found a solution to your little one’s problems.

jessica

[Anonymous]

Jessica,

I could use your help. My Lo has Sandifer’s & torticollis & is not responding his Prevacid. Any advice?

Thanks,

Jackie

[hellbennt]

what form of prevacid and what dose? my son responded at the right dose & form of prevacid plus zantac- he was taking what I felt to be a lot of meds…but it helped! when he was dosed properly the symtoms would subside. when he gained any teeny bit of weight the symptoms would come back & we’d have to increase his doses…sometimes PT (physical therapy is necessary for the tortcollis. we wer lucky that the meds took care of it- I also WORE him a lot- not sure if that helped his neck muscles or what- and we put him down on his stomach a lot- for naps I’d put a beanie baby on his back to see/watch that he was breathing!

[Anonymous]

He is supposed to be on 7.5 mgs 2X a day of Prevacid solutabs & 3ml zantac but the zantac was making him worse which I don’t know why because it never did before. I had it flavored & it was a few weeks old so I am going to get a new script. Also I was giving him the prevacid 3x a day & it helped. He was great for a week then we went to see a new GI & he told me to stop giving it that much. He wanted me to go down to once a day but I refused. Giving it twice a day made him miserable again even with the zantac(seemed to be worse right after dose). Even after I have started my old dosing it still hasn’t got better. My son will not lay his head down when on his belly or even holding him upright against my chest. He just lifts it up or buries it in the bed/floor.

I tried the Zegerid,Omeprazole & tums mixture & that was the only time he was able to relax his neck & lay it against my chest but his breath was very acidic smelling & I was worried because it wasn’t Dr approved so I stopped that.

I just saw my pedi & he blew everything off! Telling me he’ll be fine & that he doesn’t think the tort is from reflux at all. Said he didn’t feel any lumps in his neck & so on. Just because he is gaining weight & smiley in the Dr office they think he is just fine & I can’t take it anymore. I need a Dr that will take this seriously. It almost makes me question if I’m exaggerating the situation. He is always so tense I feel terrible for him.

Thank you for responding. I sent Dr Phillips an email but I don’t know if that would still be his correct email address, that post was from 2010. What dose was your LO on? I have been going by the Marci kids dosing & that’s the max I think.

[hellbennt]

my son was on marci-kids dosing, prevacid 1.5mgs per kilo. I bought caracream. this was before zegerid. it’s buffers to make the meds the most effective and so you don’t have to time around meals. I bought it and did it myself, like people are now doing w/ the products:

https://www.infantreflux.org/forum/forum_posts.asp?TID=14939&PID=114513#114513

&, like you did w/ the zererid. well, I had the RX for prevacid because there were not any otc PPIs when we went through all of this. it’s easy for me to say what I would have done if I couldn’t find a dr to rx a high enough dose- it’s easy for me to say I’d go buy some OTC. but actually, I believe I would have- I would have gone to the dr myself & say I had reflux and needed a rx. I (WE!) were DESPERATE.

is diet an issue? because I did that, too. I tell you I was desperate…

if the zegerid was working, well…you’re the mama…I can’t tell you what to do…but I have to tell you that NOTHING is ‘approved’ for babies- they can’t test drugs/medicines on babies….so ask your pharmacist WHAT is FDA approved for infants- not much…

the zantac is supposed to be given spaced 4hrs from the PPI (prevacid or zegerid or prilosec, etc)

Looking for GI: https://www.infantreflux.org/forum/forum_posts.asp?TID=660

there are recommendations for ped GIs in your area…

[Anonymous]

I did get a response from Dr Phillips & he just said “to get Tummycare Max & use it with Prevacid & that it would be better in 3-5 days”. I am already in the process of ordering TCM, it’s just taking a little longer than I had hoped. I was told I’d get my invoice to pay tonight so I really hope that it is going to solve all of my problems. Well not ALL but you know what I mean

I’m not sure if the Zegerid was working or not. The only bad thing I noticed was the acidic breath but that was all??? It just made me think that he must still be having acid in his spit up. Thing is when on the Prevacid I don’t smell that but he still has issues. I don’t really understand.

I’ll keep you posted on our success (positive attitude) with the Tummycare Max!

[hellbennt]

the acid doesn’t go away from meds, nor does the spit up…the pain goes away I look forward for a post from you in hip hip hooray!!

[hellbennt]

Can you please share your doctors- the good and the bad?

This will help others who find the sitehttps://www.infantreflux.org/forum/forum_posts.asp?TID=660

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