Home › Forums › Special Topics › Sandifer's Syndrome › Sandifers???
- This topic has 19 replies, 1 voice, and was last updated 17 years, 8 months ago by hellbennt.
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April 12, 2006 at 8:20 pm #6047AnonymousInactive
Hi Everyone. I am new to the whole reflux thing. My baby Liam is 5 months old tomorrow. He was diagnosed with reflux about a month ago… although something told me he has had reflux since birth! I have always noticed that while sitting up or lying down he turns his head to the left and kind looks over his shoulder. He seems to be uncomfortable. The only way that he sleeps well is on his stomach. Does this sound like Sandifer’s to you guys and if so should I have him see a GI specialist? Do infants outgrow sandifer’s? Thanks for all of your help. I just want to help the little guy and am so frustrated.
April 12, 2006 at 10:11 pm #6052hellbenntKeymasterit could be sandifer’s if there are other reflux symptoms.
my lo was in PAIN & had sandifer symptoms that went away with the right dose of meds (PPI)
I wrote about it all here (scroll through, look for sandifer info, bookmark the page & come back): https://www.infantreflux.org/forum/forum_posts.asp?TID=853&am p;PN=1&TPN=1
April 12, 2006 at 10:26 pm #6053AnonymousInactiveThanks so much. I have read much of you information about your sons history and found it to be very helpful 🙂 However, Liam does not exhibit the classic signs. He doesn’t seem to be in pain. He rarely ever cries or vomits. His only main symptom is the arching/ turning of his neck (to the left and up). Any thoughts??? I am so perplexed…
April 12, 2006 at 10:42 pm #6054hellbenntKeymasterwell, it could be plain ‘ole torctilitus ( I cannot spell!!!)
or reflux (you say your baby has reflux)
if it’s reflux it’ll go away w/ a PPI- I don’t know if you can find a dr to prescribe one at a high dose for his weight just as an experiment, ya know? but if it was sandifer’s, the symptoms would go away, I’d imagine after 2wks or so of the meds…
hmm…
April 13, 2006 at 7:47 am #6063AnonymousInactiveInteresting thought about the torticollis Laura. I didn’t think about that one.
April 13, 2006 at 7:49 am #6064AnonymousInactivewhat is torticollis?
April 13, 2006 at 8:25 am #6066hellbenntKeymasterI’m going away for the weekend, so you guys are in charge, lol!
please give my welcome/intro link: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&am p;am p;PN=1&TPN=1
and here’s how to do a search )I did one for you at the bottom of the page):
to do a search: there’s the ‘search’ button located in the upper right hand corner of the screen
you put the key word/s you’re searching for
then you choose “Topic Subject” from the drop- down menu of “Search In”
then I like to choose “All Forums” from the drop- down menu of “Search Forum”
then I like to choose “Topic Start Date” from the drop- down menu of “Sort Results By” (this way I get all the posts from the past that might help me)
Here ya go: https://www.infantreflux.org/forum/search.asp?KW=torticollis+ &SM=1&SI=TC&FM=0&OB=2
April 13, 2006 at 11:23 am #6073AnonymousInactiveThanks for the info… Liam actually does not tilt his head to one side and has full range of motion both ways. He doesn’t turn his head like that all the time. Mainly when he is tired or after he eats. To describe what it looks like would be if he was lying down and someone called his name and he was looking over his left shoulder… get it???
have a great weekend Laura! (everyone else too )
April 17, 2006 at 4:16 pm #6255AnonymousInactiveHello!
I’m from Hungary. I speak a little English. My daughter have Sandifer syndrome. She is 2 year old, she was 20 Month, when was diagnosed(The symptoms are from age of 3 Month). We have tried many meds (PPI and other), but no success. She was always hunger (hunger pain) from the meds and the neck and shoulder arching, discomfort and hypotonia were worse. Now, our Doc make a blood test with metabolic disease.
Heard anyone about there?
Thanks for the help
April 17, 2006 at 4:22 pm #6256AnonymousInactiveHi there. My daughter also had a metabolic workup (blood work) to rule out metabolic disorders. It’s a good way to make sure that there’s nothing else going on and causing the problem. You mention “hyptonia”, does she have low muscle tone? Which meds did you try? Was she on a good dose of PPI? Hope that things improve for your daughter soon. Good luck.
April 18, 2006 at 7:28 am #6306AnonymousInactiveHi! Thanks for your reply. I think about hypotonia is a low muscle tone.
We have tried Prilosec (in Hungary called Losec), 2 times a day 5 mg, but she was always hunger from that, she woke up 3 times at night to eat. After eating began the arching and crying… That was very terrible. Now she is on Motilin (domperidone), with the gastric emptying, so she can eat together more, like before. But the symptoms of Sandifer do’nt decreased.
April 18, 2006 at 8:08 am #6309AnonymousInactiveIs it possible that the losec made her comfortable enough that she could eat more, but the more she ate, the worse the reflux got? Maybe you could try something like prevacid, not sure if you have it there. It’s like losec basically, but sometimes kids do better on one med then another. Has she had any testing to see if she has damage to her esophagus like an endoscopy?
April 18, 2006 at 8:42 pm #6357hellbenntKeymasterhi & welcome!
10mg of losec sounds like a low dose…
anyway, there are lots of people here to help you!
i have a lot to say: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&am p;PN=1&TPN=1
so glad you found us!
~laura
April 20, 2006 at 9:27 am #6450AnonymousInactiveThank you all!
It’s too long for me, but i’ll translate. My English is very bad. I speak better german… I hope I’ll learn from you a little English
What I know, that Losec for Nina is’nt good, I have began 3 times again to give her, but it isn’t used. Today evening I give for her Zantac, that I did’nt yet tried.
Now I have ordered a Benik vest (from US) with the hypotonia. Did you heard about that?
Lilla
April 26, 2006 at 10:38 am #6869AnonymousInactiveHello,
I am new here….my 9 month old daughter has had 4 “seizure”-like episodes…her EEG/MRI results were all normal and the ped neuro thinks it may be Sandifer’s. I dont have an appt with a ped gastro until 6/1 so hoping some questions may be answered here! Elianna’s problems started shortly after starting on solids…first with severe chronic constipation, not eating well, prefering to nurse and then her first episode on 3/2. Only one of her episodes occurred after eating….the other 3 were 1-2 hours after eating but she was in a jumper. All four were virtually identical….eyes rolled back and to right, head tilted back, arm extended, leg bicyled a little…lasted less than a minute…during the episode she appeared unresponsive…didnt respond to her name, etc. Afterwards she came back to normal pretty quick…however, the last one she seemed tired which worries me because that seems more like a seizure characteristic. The neuro wants the reflux ruled out before we go any further…here are my questions..#1Elianna is a fairly content happy baby…no extreme fussiness…however the last couple months she has been waking 2x at night…can a baby with Sandifer’s be nonirritable? She is fussy after the episodes but other than that she is a pretty happy baby! #2 She has little vomiting/spitting up maybe silent reflux? #3Are hiatal hernia’s genetic…my dad had one? #4Do other babies experience sleepiness after an episode? Thank you so much…I am so glad to have found this board!
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