InfantReflux.Org Forums: Sandifer’s Syndrome

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hellbennt
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Topic: Sandifer’s Syndrome
Posted: 12 September 2003 at 12:15am

This thread is helpful, but you have to skim through some of the posts in the middle, as they do not refer to Sandifer's per se...just read this post & then go to page 2 (the other posts may help you with other topics, though, just not Sandifer's)...

hi everyone,

i decided to start a new topic: Sandifer's Syndrome.

Well the classic, that i'm sure all of our children have, is the back
arching. Jonah does this and stiffens up & his face turns beet red.

In addition, I noticed that Jonah turns his head mainly to one side,
but it looks really twisted & it began to worry me. also, he'll stiffly stick out a leg, the opposite leg of the side to which his head is turned.

what really worried me is that i noticed him doing
these really odd movements w/ his eyes kinda rolling and his body basically relaxed, except for the movements. the only way i can
describe it is that it looks like he's 'dancing' somehow. i noticed it after eating & thought at first he was 'milk drunk' -just really relaxed & falling into a deep sleep (REM cycles was my explanation
for the eye movements).

It turns out that there is some sort of neurological connection to reflux. apparently, it's how infants' bodies deal with and react to
the pain. (interesting!)

there doesn't seem to be much, but here's what I've found:

1)http://www.emedicine.com/ped/topic2039.htm

2)also: "Thirteen patients exhibited behavior most consistent with the Sandifer Syndrome, the most commonly described problems being vomiting and regurgitation, severe irritability, "throwing the head back," "rolling of the eyes" and "moving around a lot." [from http://www.cdlsusa.org http://www.cdlsusa.org/publications/the-cause-of-feeding-dif ficulties-in-cdls-is-sandifer-syndrome.html - PUBLICATIONS: FEEDING-AND-
GASTROESOPHAGEAL]

3) http://www.int-pediatrics.org/PDF/Volume_19/19_1/39_41_ip190 4.pdf

i guess if the meds get the reflux under control, the symptoms will go away[note: YES!! they do!!]. So far, he's had this all along, even w/ the meds...
he just started prilosec, & already i've seen the symptoms lessen! so hopefully w/ the correct dose i'll see even more improvement. i'm using the symptoms as a barometer of sorts.

~laura

Edited by hellbennt

~laura~
Jonah 7/03:GERDfree@12mos! Silent Reflux@birth(apnea episodes/NICU);Past Sandifer Symptoms, breastfed->15mos
Ari 7/06 REFLUX FREE, so miracles do happen!

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whisper
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Posted: 26 September 2003 at 9:14pm

Can someone please help me??Even if just to maybe chat on yahoo or email.Guess I Am looking for any amount of support possible.My son was born almost 12 weeks early and suffers severe reflux as shown on a ph probe.He used to be a silent refluxer but now spits up after all feeds and occasionally projectile vomits.He has been on Enfamil AR for about 2 months and while in nicu appeared to do fine on it.He is now so gassy and screams nonstop.The pediatricin who is no help whatsoever said to try Nutramigen and I have tried it for a few feeds at a time but then get terrified as to how thin it is.I am now going to try it again and try to stick with it for a week.My son is on Reglan and used to take Zantac but the ped switched him to Mylanta(I don't see how that can be of any help to anything this severe but who knows)I guess I am just looking for any ideas or support,please either email me or contact me on yahoo or post.Thank you for any input at all.A very sleepy mom with a baby on a monitor but even sleeping on tummy does not help

I just wish with all my heart he was not in pain.The dr's have talked about a fundoplication on numerous occasions but for some reason I have this horrible gut feeling about it.

Jessica mom to Kaiden born 6/20/03 at 29 weeks gestation.Severe reflux

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hldt
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Posted: 26 September 2003 at 10:57pm

Jessica-You need to ask for a referral to a Gastrointestinal Dr. (GI Dr.) if you haven't already. Please go to the topics of medicines and that will give you tons of info. about the meds. Gracie was 6 weeks early. Does your baby have any other problems being preemie?

Heather-mother of Gracie- one year old-severe acid reflux-6 weeks premature

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Layne199
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Posted: 26 September 2003 at 11:11pm

Jessica

You may want to try the Nutramigen or Alimentum for a little while. My son is on Neocate which is an amino acid formula (no whole proteins). I was told to try it for 14 days before I could quit. I called the GI dr crying on day 10 saying I just couldn't stand what it was doing to my baby (it is very very thin and low in density). He begged me to give it a few more days and I did...Isaiah is doing great on it! He still refluxes and is on Prilosec 20mg, but it is better than it was. We tried REglan, but he reacted to it and Zantac did not work either. I can tell you that in the middle of a reflux attack, I always grab the Mylanta--it works in minutes! There have been nights that I have to give it to him every 2 hours just so we can sleep. If your son is that gassy and screams non-stop, you may want to give the Nutramigen a longer try. It sounds as if it may be a protein allergy along with the reflux. Also, as Heather said...go to a PEDIATRIC GI and make them help you! Feel free to email me at Layne199 @ surfbest.net

Willow

Edited by Layne199 - 28 January 2006 at 9:37am

Isaiah 6 1/2 yrs. GERD, DGE, eosinophilic esophagitis, gastroenteritis & colitis, IBD, and multiple food/med allergies. Neocate Jr only. Possible NF and mitochondrial disorder

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monty123
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Posted: 27 September 2003 at 7:52am

Hi Jessica,

I am so sorry. This is the toughest time as well, right around your due date! The babies are so well behaved in the NICU and then their true personalities come out as soon as you get them home!! When were you due?

We also have a preemie, and it is not easy. I agree that you need a GI specialist and that is the first thing you need! Also, we are on Nutramigen and we thicken it with rice cereal. That really seemed to help Dylan swallow it better being thicker. (I am assuming that is why they had you on the AR anyway for the added rice?). Also, what bottles are you using? The Dr. Browns bottles have made everything easier at this point! They make a preemie nipple, and have level 1 - 2 - 3 nipples and also a y-cut nipple for if you want to add the rice cereal so that you don't have to cut the nipple yourself. I would discuss these options with your ped, but you definately need a GI specialist asap!

e-mail me if you want monty123@sbcglobal.net.

Ann Marie

Ann Marie
Dylan 2/28/03 (27 wkr, past GERD, NEC, ROP, GBS/meningitis, brain bleed)
Carter 3/25/06 (29 wkr, past GERD, Cardiac arrest w/Immunizations, syndromic features?, all neg tests so far)

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whisper
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Posted: 27 September 2003 at 10:30am

I really appreciate everyone's reply.I bought the Dr Browns bottles but have yet to use to them.I am going to stick with the Nutramigen and hopefully it will help some.I am going to get a new ped next week and first thing I am going to do is ask for a referral.I just hope with everything I do not have to hear about the fundoplication surgery AGAIN.Someone asked if my son has any other problems associated with being a preemie,to that not really.He had a very rough road in the nicu and has decreased lung function but for the most part is fine.He was intubated 4 times while in the hospital and had 4 blood transfusions.As far as the Enfamil AR goes yes he was on it for the added thickness but I am thinking that the rice starch is what is making him so gassy.I asked about adding cereal to the Nutramigen but the dr said that it would alter the element of the formula no longer making it easier to digest.From there I asked about Thick_It but was told that it was for older children and adults with dysphagia.I just want some help and a place to turn...Thank you so much for your replies and I hope to hear from you often.If anyone has msn messenger or yahoo please let me know as sometimes being able to talk it is easier to answer questions and give and receive advice.Any help at all would be wonderful regarding other possibilities I could try.We do have his bed elevated but he basically will only sleep in his swing although he did sleep decently on his tummy last night(I just still don't have alot of faith in the monitor,so that scares me)..Anyway sorry to ramble on I guess I just feel like our story is so long and I know I am leaving tons of things out.Thank you so much and I look forward to hearing from you soon

Edited by whisper

Jessica mom to Kaiden born 6/20/03 at 29 weeks gestation.Severe reflux

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whisper
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Posted: 27 September 2003 at 10:56am

OKay sorry to post again so quickly but HELP....Everytime I start to give Nutramigen something happens to make me switch back to teh AR without even giving teh Nutramigen time to work but my problem is we just started giving Nutramigen around 8 o clock last night and since we started giving it he is not eating hardly anything.I just tried to feed him and he took an ounce and a half and probably drooled and spit up half of that.The last time he had eaten prior to this was at 4:45am it is now 10am and at that feed he only took an ounce I literally have NO idea what to do...Do I switch to the AR AGAIN???

Jessica mom to Kaiden born 6/20/03 at 29 weeks gestation.Severe reflux

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Layne199
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Posted: 27 September 2003 at 11:07am

Jessica

I have AOL messengar, my name is Layne378. Your son may not like the taste of the Nutramigen. I would try my hardest to stick with it. Is he miserable because he is hungry?

Willow

Isaiah 6 1/2 yrs. GERD, DGE, eosinophilic esophagitis, gastroenteritis & colitis, IBD, and multiple food/med allergies. Neocate Jr only. Possible NF and mitochondrial disorder

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whisper
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Posted: 27 September 2003 at 11:19am

Layne,

This morning all he will do is sleep which at this point you would think I would be thrilled but I am so scared that he will get dehydrated.2 ounces cannot possibly be enough in a matter of 8-10 hours.I am just so lost as to what to do.With teh ENfamil AR he will take anywhere from 2-6 ounces at a time but then he cries nonstop day and night.I unfortunately do not have AIM so I guess maybe our only option is via the message board or email.It just seems that everything I try fails.He had a cricoid split on 8/28 to open his airway due to subglottic stenosis and jusy had a hernia repair done on Thursday.While in the hospital with his hernia repair he was eating well(Enfamil AR) but spit up with every feed and cried for hours on end I am just so confused and unfortunately can't get anywhere with our current ped...

Jessica mom to Kaiden born 6/20/03 at 29 weeks gestation.Severe reflux

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Layne199
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Posted: 27 September 2003 at 12:00pm

Jessica

Try to mix the Nutramigen 1/4 and Enfamil AR 3/4 for a day or 2 and then 1/2 and 1/2, etc. This may make the transition easier. If he took the Nutramigen last night from 8 pm until this morning, he may be sleeping because he feels good and doesn't hurt. Please let me know how he does.

Willow

Isaiah 6 1/2 yrs. GERD, DGE, eosinophilic esophagitis, gastroenteritis & colitis, IBD, and multiple food/med allergies. Neocate Jr only. Possible NF and mitochondrial disorder

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Sandifer's Syndrome
InfantReflux.Org Forums : Special Topics : Sandifer's Syndrome

Author	Message
hellbennt Moderator Group Joined: 28 August 2003 Location: United States Online Status: Offline Posts: 11454	Topic: Sandifer’s Syndrome Posted: 12 September 2003 at 12:15am
	This thread is helpful, but you have to skim through some of the posts in the middle, as they do not refer to Sandifer's per se...just read this post & then go to page 2 (the other posts may help you with other topics, though, just not Sandifer's)... hi everyone, i decided to start a new topic: Sandifer's Syndrome. Well the classic, that i'm sure all of our children have, is the back arching. Jonah does this and stiffens up & his face turns beet red. In addition, I noticed that Jonah turns his head mainly to one side, but it looks really twisted & it began to worry me. also, he'll stiffly stick out a leg, the opposite leg of the side to which his head is turned. what really worried me is that i noticed him doing these really odd movements w/ his eyes kinda rolling and his body basically relaxed, except for the movements. the only way i can describe it is that it looks like he's 'dancing' somehow. i noticed it after eating & thought at first he was 'milk drunk' -just really relaxed & falling into a deep sleep (REM cycles was my explanation for the eye movements). It turns out that there is some sort of neurological connection to reflux. apparently, it's how infants' bodies deal with and react to the pain. (interesting!) there doesn't seem to be much, but here's what I've found: 1)http://www.emedicine.com/ped/topic2039.htm 2)also: "Thirteen patients exhibited behavior most consistent with the Sandifer Syndrome, the most commonly described problems being vomiting and regurgitation, severe irritability, "throwing the head back," "rolling of the eyes" and "moving around a lot." [from http://www.cdlsusa.org http://www.cdlsusa.org/publications/the-cause-of-feeding-dif ficulties-in-cdls-is-sandifer-syndrome.html - PUBLICATIONS: FEEDING-AND- GASTROESOPHAGEAL] 3) http://www.int-pediatrics.org/PDF/Volume_19/19_1/39_41_ip190 4.pdf i guess if the meds get the reflux under control, the symptoms will go away[note: YES!! they do!!]. So far, he's had this all along, even w/ the meds... he just started prilosec, & already i've seen the symptoms lessen! so hopefully w/ the correct dose i'll see even more improvement. i'm using the symptoms as a barometer of sorts. ~laura Edited by hellbennt
	~laura~ Jonah 7/03:GERDfree@12mos! Silent Reflux@birth(apnea episodes/NICU);Past Sandifer Symptoms, breastfed->15mos Ari 7/06 REFLUX FREE, so miracles do happen!

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whisper Newbie Joined: 26 September 2003 Location: United States Online Status: Offline Posts: 16	Posted: 26 September 2003 at 9:14pm
	Can someone please help me??Even if just to maybe chat on yahoo or email.Guess I Am looking for any amount of support possible.My son was born almost 12 weeks early and suffers severe reflux as shown on a ph probe.He used to be a silent refluxer but now spits up after all feeds and occasionally projectile vomits.He has been on Enfamil AR for about 2 months and while in nicu appeared to do fine on it.He is now so gassy and screams nonstop.The pediatricin who is no help whatsoever said to try Nutramigen and I have tried it for a few feeds at a time but then get terrified as to how thin it is.I am now going to try it again and try to stick with it for a week.My son is on Reglan and used to take Zantac but the ped switched him to Mylanta(I don't see how that can be of any help to anything this severe but who knows)I guess I am just looking for any ideas or support,please either email me or contact me on yahoo or post.Thank you for any input at all.A very sleepy mom with a baby on a monitor but even sleeping on tummy does not help I just wish with all my heart he was not in pain.The dr's have talked about a fundoplication on numerous occasions but for some reason I have this horrible gut feeling about it.
	Jessica mom to Kaiden born 6/20/03 at 29 weeks gestation.Severe reflux
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hldt Newbie Joined: 18 August 2003 Location: United States Online Status: Offline Posts: 78	Posted: 26 September 2003 at 10:57pm
	Jessica-You need to ask for a referral to a Gastrointestinal Dr. (GI Dr.) if you haven't already. Please go to the topics of medicines and that will give you tons of info. about the meds. Gracie was 6 weeks early. Does your baby have any other problems being preemie?
	Heather-mother of Gracie- one year old-severe acid reflux-6 weeks premature
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Layne199 Groupie Joined: 05 August 2003 Location: United States Online Status: Offline Posts: 509	Posted: 26 September 2003 at 11:11pm
	Jessica You may want to try the Nutramigen or Alimentum for a little while. My son is on Neocate which is an amino acid formula (no whole proteins). I was told to try it for 14 days before I could quit. I called the GI dr crying on day 10 saying I just couldn't stand what it was doing to my baby (it is very very thin and low in density). He begged me to give it a few more days and I did...Isaiah is doing great on it! He still refluxes and is on Prilosec 20mg, but it is better than it was. We tried REglan, but he reacted to it and Zantac did not work either. I can tell you that in the middle of a reflux attack, I always grab the Mylanta--it works in minutes! There have been nights that I have to give it to him every 2 hours just so we can sleep. If your son is that gassy and screams non-stop, you may want to give the Nutramigen a longer try. It sounds as if it may be a protein allergy along with the reflux. Also, as Heather said...go to a PEDIATRIC GI and make them help you! Feel free to email me at Layne199 @ surfbest.net Willow Edited by Layne199 - 28 January 2006 at 9:37am
	Isaiah 6 1/2 yrs. GERD, DGE, eosinophilic esophagitis, gastroenteritis & colitis, IBD, and multiple food/med allergies. Neocate Jr only. Possible NF and mitochondrial disorder
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monty123 Senior Member Joined: 03 August 2003 Location: United States Online Status: Offline Posts: 2679	Posted: 27 September 2003 at 7:52am
	Hi Jessica, I am so sorry. This is the toughest time as well, right around your due date! The babies are so well behaved in the NICU and then their true personalities come out as soon as you get them home!! When were you due? We also have a preemie, and it is not easy. I agree that you need a GI specialist and that is the first thing you need! Also, we are on Nutramigen and we thicken it with rice cereal. That really seemed to help Dylan swallow it better being thicker. (I am assuming that is why they had you on the AR anyway for the added rice?). Also, what bottles are you using? The Dr. Browns bottles have made everything easier at this point! They make a preemie nipple, and have level 1 - 2 - 3 nipples and also a y-cut nipple for if you want to add the rice cereal so that you don't have to cut the nipple yourself. I would discuss these options with your ped, but you definately need a GI specialist asap! e-mail me if you want monty123@sbcglobal.net. Ann Marie
	Ann Marie Dylan 2/28/03 (27 wkr, past GERD, NEC, ROP, GBS/meningitis, brain bleed) Carter 3/25/06 (29 wkr, past GERD, Cardiac arrest w/Immunizations, syndromic features?, all neg tests so far)
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whisper Newbie Joined: 26 September 2003 Location: United States Online Status: Offline Posts: 16	Posted: 27 September 2003 at 10:30am
	I really appreciate everyone's reply.I bought the Dr Browns bottles but have yet to use to them.I am going to stick with the Nutramigen and hopefully it will help some.I am going to get a new ped next week and first thing I am going to do is ask for a referral.I just hope with everything I do not have to hear about the fundoplication surgery AGAIN.Someone asked if my son has any other problems associated with being a preemie,to that not really.He had a very rough road in the nicu and has decreased lung function but for the most part is fine.He was intubated 4 times while in the hospital and had 4 blood transfusions.As far as the Enfamil AR goes yes he was on it for the added thickness but I am thinking that the rice starch is what is making him so gassy.I asked about adding cereal to the Nutramigen but the dr said that it would alter the element of the formula no longer making it easier to digest.From there I asked about Thick_It but was told that it was for older children and adults with dysphagia.I just want some help and a place to turn...Thank you so much for your replies and I hope to hear from you often.If anyone has msn messenger or yahoo please let me know as sometimes being able to talk it is easier to answer questions and give and receive advice.Any help at all would be wonderful regarding other possibilities I could try.We do have his bed elevated but he basically will only sleep in his swing although he did sleep decently on his tummy last night(I just still don't have alot of faith in the monitor,so that scares me)..Anyway sorry to ramble on I guess I just feel like our story is so long and I know I am leaving tons of things out.Thank you so much and I look forward to hearing from you soon Edited by whisper
	Jessica mom to Kaiden born 6/20/03 at 29 weeks gestation.Severe reflux
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whisper Newbie Joined: 26 September 2003 Location: United States Online Status: Offline Posts: 16	Posted: 27 September 2003 at 10:56am
	OKay sorry to post again so quickly but HELP....Everytime I start to give Nutramigen something happens to make me switch back to teh AR without even giving teh Nutramigen time to work but my problem is we just started giving Nutramigen around 8 o clock last night and since we started giving it he is not eating hardly anything.I just tried to feed him and he took an ounce and a half and probably drooled and spit up half of that.The last time he had eaten prior to this was at 4:45am it is now 10am and at that feed he only took an ounce I literally have NO idea what to do...Do I switch to the AR AGAIN???
	Jessica mom to Kaiden born 6/20/03 at 29 weeks gestation.Severe reflux
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Layne199 Groupie Joined: 05 August 2003 Location: United States Online Status: Offline Posts: 509	Posted: 27 September 2003 at 11:07am
	Jessica I have AOL messengar, my name is Layne378. Your son may not like the taste of the Nutramigen. I would try my hardest to stick with it. Is he miserable because he is hungry? Willow
	Isaiah 6 1/2 yrs. GERD, DGE, eosinophilic esophagitis, gastroenteritis & colitis, IBD, and multiple food/med allergies. Neocate Jr only. Possible NF and mitochondrial disorder
	IP Logged

whisper Newbie Joined: 26 September 2003 Location: United States Online Status: Offline Posts: 16	Posted: 27 September 2003 at 11:19am
	Layne, This morning all he will do is sleep which at this point you would think I would be thrilled but I am so scared that he will get dehydrated.2 ounces cannot possibly be enough in a matter of 8-10 hours.I am just so lost as to what to do.With teh ENfamil AR he will take anywhere from 2-6 ounces at a time but then he cries nonstop day and night.I unfortunately do not have AIM so I guess maybe our only option is via the message board or email.It just seems that everything I try fails.He had a cricoid split on 8/28 to open his airway due to subglottic stenosis and jusy had a hernia repair done on Thursday.While in the hospital with his hernia repair he was eating well(Enfamil AR) but spit up with every feed and cried for hours on end I am just so confused and unfortunately can't get anywhere with our current ped...
	Jessica mom to Kaiden born 6/20/03 at 29 weeks gestation.Severe reflux
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Layne199 Groupie Joined: 05 August 2003 Location: United States Online Status: Offline Posts: 509	Posted: 27 September 2003 at 12:00pm
	Jessica Try to mix the Nutramigen 1/4 and Enfamil AR 3/4 for a day or 2 and then 1/2 and 1/2, etc. This may make the transition easier. If he took the Nutramigen last night from 8 pm until this morning, he may be sleeping because he feels good and doesn't hurt. Please let me know how he does. Willow
	Isaiah 6 1/2 yrs. GERD, DGE, eosinophilic esophagitis, gastroenteritis & colitis, IBD, and multiple food/med allergies. Neocate Jr only. Possible NF and mitochondrial disorder
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Topic: Sandifer’s Syndrome
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