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Sandifer's Syndrome
 InfantReflux.Org Forums : Special Topics : Sandifer's Syndrome  
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hellbennt
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Quote hellbennt Replybullet Posted: 27 November 2003 at 10:50am
holly,
jonah continues to do crunches but i'm not sure they're what you're describing...i think he's just flexing his muscles, trying to sit up, or, othertimes it's due to gas or straining because of discomfort related to having to make a bowel movement...

jonah continues to glerk, even w/ his medicines. when the medicines are working, the glerks don't seem to bother him, he just continues on as a happy baby. when we hear the glerks we are always on the lookout for other signs, bcse he could very well be om his way to an 'acid attack.' then he'll shriek painfully & we dose him w/ zantac & mylanta. if the glerking is particularly awful, he'll get a shot of carafate. ah, the meds this kid takes! but mainly the prevacid & zantac have been working to keep the acid attacks at a minimum, thank God!

i think the PPIs should cut down on the amount of reflux, but they also help take the pain away, so that if they are refluxing, it doesn't hurt as bad- you should check w/ your dr. though, & share what you find- i'd like to know:)
even at Jonah's best, we still hear the glerking going on inside...we go by what seems to bother him...and, i use the sandifer symptoms as a barometer. if he starts doing his tic-dance-trance after feedings then i'd know to contact the dr. & request more meds...thankfully he's doing pretty well!!!

i'm w/ gigi, in that i think you can 'play around' w/ the doses- if you go too high, in my opinion, then you have no where left to go...i'm not sure how much sierra wieghs or if shes on prilosec or prevacid, but my dr. wouldn't go any higher than 16mg of prilosec on the day & now jonah's on 18mg on the day of prevacid & the dr. won't go any higher on it now, either- not until jonah gains a significant amount more weight (probably in the 20s) & he's only pushing 15lbs now). so he's on 3ml a day of zantac to fill in the gaps...

hang in there!
~laura
~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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shell c
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Quote shell c Replybullet Posted: 27 January 2006 at 9:28am
Originally posted by Holann

Hi all...thank you agian for all yourkind words. We are back from hospital and it all went well. Although Sierra is now back on high dose steroid called decadron. I was told it makes reflux worse. They were right. I cannot put Sierra anywhere othr than holding her upright. The endoscopy also showed a red esophagus and larygnx...they were suggesting a ph probe study but if we already know her throat is irritated I dont want to put her through the stress of that test(18hrs).
Michelle did you say you were using zantac and prilosec? How ? Full doses of each? Also has anyone seen their child pull forward like she is doing abdominal crunches? Sierra does this especially when on her back at an angel. They are very strong straining contractions. They seem to bug her but she doesnt cry. Very odd. She even does them when laying in the sling in the crib.
I guess I am wondering what life is like for Moms out there with relfuxing babaies. Do you go anywhere? I am afraid of the car seat..it really bothers Sierra. She doesnt cry but I can here her reflux and swallow. Many positions make her reflux and swallow so I try to avoid those....but that keeps me holding her almost all day. Yesterdy I ried the front carrier but her eye still teared up and even a few coughs etc. Is this what life looks like for you??? Sierra reflux is silent so she gest the acid going up and back down. I feel terribly guilty if I do something with her that cause the reflux to get stronger...anyone know what i mean?

I am so happy to have found this website!! I cant beleive how alone I was feeling.
hope to her from you soon
Holly
Hi Holly! My daughter does exactly the same thing!! She has only been diagnosed with GERD though! is this a symptom of sandifer's though cause i am a bit worried again now i've read this! she has also always tossed her head when lying down since she was born and she wakes at every little noise!!
mother of Eden dob 11-aug-05, on 2.1ml zantac, 2 times a day, formula and solid fed!!
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Quote Kirsten Replybullet Posted: 27 January 2006 at 11:40am

Holly~  I have to assure you that YES life DOES get easier!  My son Gunnar was born with Sandifer's Syndrome and just in these past 4 years has it become more known and doctors have become more aware of treatments.  I have to say reading your frustrations reminds me of how things were for us!  My husbands family could not understand why I would dred the 30 minute drive to their homes...Gunnar did NOT do goo in the carseat due to the pressure on his tummy and then it was listening to him scream the whole way to their homes and me at my whits ends!  Not my idea of fun!  Also my son would flip (arch) backwards out of the blue!  We always made anyone holding him have a firm hand on his back!!  He also was one that would not like us to rock in a rocking chair we had to stand and rock holding him belly to belly and that could mean for a few hrs in the middle of the night. 

I think for the most part all of us parents that have seen the "light" and know you do get through it all, at the time though enlist on support for help at home, don't stress on the little things (laundry, dishes, etc.) they aren't worth it!  Just don't be affraid to make other understand you need help and yes, it is stressful you want your baby healthy and happy! 

Kirsten Nickerson
Coeur d'Alene, Idaho
mother to Gunnar 6/4/01 Sandifer's/GERD
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hellbennt
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Quote hellbennt Replybullet Posted: 27 January 2006 at 2:33pm

look at the dates!!!

this post is most likely a link from my welcome/intro, so it's not a 'current' thread per se...

hi kristen!!

~laura

~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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elainetheodore
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Quote elainetheodore Replybullet Posted: 12 February 2006 at 6:19pm

hollan, the behavior you described doesn't quite match to my daughter's but i outlined it in a post to laura...it did match many of the symtoms in the research...she turns her head to  one side while on the breast and pushes her feet so she's off then at times will stiffen her legs and contort her mouth and close her eyes (slightly rolled back) do you know if these symtoms also sound like sandifor's?

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hellbennt
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Quote hellbennt Replybullet Posted: 12 February 2006 at 7:03pm

elainetheodore,

these are old posts...

(see the dates)...

~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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Quote 024kwq000d Replybullet Posted: 18 May 2013 at 11:37am
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