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Sep 02, 2008
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
arching while refluxing
Hi. I was wondering how many of you have had the arching thing while feeding your LO? Joslyn, while having a rough time, will arch back so hard that it is almost impossible to hold her. She does this while feeding and seeming to be having a flare up. She gets soooo stiff that you can't even bend her back. I was looking up some stuff about relfux and found this name Sandifer's syndrome. I have nor heard of this before. I was wondering if anyone has experienced this? Is she just doing the normal back arching?Jacky
Sep 02, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
It's really hard to tell the differnece between the two. Jedd did the arching thing and yes, it was near mpossible to hold him while he did this.

We eventually at about 2.5-3 months old stopped holding him while feeding him and strapped him into a cbouncy seat to keep him "safe". :-( We didn't want him to fall out of our arms so that was the next best thing.

Someone on P2P has a video about the difference between seizures and sandifer's. I'll have to try and find it for you.

Sep 02, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
ONE MORE THING
If she is arching like that she may need somethign for breakthrough pain or her meds. might need to be upped. We did that with Jedd.
Sep 02, 2008
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
Yup - went through this for about 5 months until the meds started to completely control the pain. She was impossible to hold - ended up getting to the couch where I could safely let her go with dropping her on her head. Shw ould also pummel us with her fists and scream bloody murder. Now she only arches to fight us going to sleep ;-) Maybe try maalox before feeding her?
Sep 02, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Megan arches as you describe quite frequently. Sometimes though we can hear gulping with her and literally see them right below the tip of her sternum. We had 3 episodes of what I now believe to be sandifer's syndrome. The hospital diagnosed her with POSSIBLE idopathic seizures. We thought is was seizures at the time, but all of her test came back normal. They never told us about Sandifer's syndrome. I do my own research so, After reading about Sandifer's I truly believe that's what it was. Every time she had her back arched giggling and playing with her head to the left side. Suddenly she would stiffen and start shaking. , and then she went totally limp and unresponsive. The whole event was less than 1 minute but felt like a lifetime. Afterwards she would sleep as her body was totally exhausted. We were in the hospital her first Christmas for this and they found nothing. EEG was normal and everything. We were just frazzled. Hope your DD never experiences the arching to this point. Megan also experiences the arching totally unrelated to feeding such as in the middle of the night. Last night we were up from 11PM-5:30 AM. She was arching so bad we had to put her in the floor to keep her safe.(She was coming close to falling off of our bed and getting stuck in the rails on hers. When we could get her quiet and still long enough we heard the gulping. It always happens like this: You can see and feel a spasm right below the tip of her sternum (which is very sharp pointed) Then we hear a loud gulping sound, then screaming and arching that no amount of words or love or comforting seems to help. This is why we are so desperate for answers. If our little one did not hurt so much every day and night of her life, if she were able to get some rest and enjoy herself, I think she would eat enough to sustain herself.
Sep 02, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
LInk From P2P
That show a video with Sandifer's in it.

The post by the first MOm with links to youtube videos....I really don't htink those are sandifer's enven though the parents labled them as such., (sorry)

The post made my srmina shows her DD sandifers and seisure episodes. She is post #3 the numers are on the right of each post made.

HTH

Sep 02, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
DUH Forgotr link..LOL
http://www.parent-2-parent.com/forum/showthread.php?t=86459&highlight=sandifer%27s+syndrome%3B+videos
Sep 02, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
Hi Jacky. So sorry about Joslyn. Yes, Sebastian did this ALL the time...until we got his reflux under control. For us, that made for more than seven long months...

I think it may be Elyse that had Sandifer's? Sharon will probably chime in.

Of course, when Sebastian gets pissed at me - like if I'm holding him and take away the remote control because he has gotten the TV on a split screen and I have no idea how to fix it - he turns into a board, too. And there is NO bending him. He is pretty heavy (now weighs 1/4 what I do. He is my little Olympian!), so for me, it is a struggle just to avoid dropping him!

Sep 02, 2008
jessicalynn
Brent 2 years old,
Birthweight 12 lbs 3.3 oz!
Very severe GERD,LPR,FTT
Severe esophagitis/scarring
Paraesophageal Hiatal Hernia,
Esophageal Dysmotility,
Food impaction,Aspiration
ALTE,Dysphagia,Odynophagia
Eosinophilic Esophagitis,Severe retching
Severe allergic colitis/malabsorption
Susp eosinophilic colitis,chronic diarrhea,
Laryngomalacia,Gas/Bloat Syndrome,
Visceral Hyperalgesia,GI Dysmotility,
Chronic infection(ear/sinus/lung)
Adenoid/tonsillar hypertrophy
Gait abnormality/bowlegs,widened growth plates
Susp Vagus Nerve Damage
Surgeries, Nissen fundo,hernia repair/
reconstruction,esophageal dilation,gtube,
ear tubes,adenoidectomy
Bronchs w/ BAL's,lung biopsy
Upcoming scope/colonoscopy
Manometry testing in Oct.
Meds: Nexium,Zantac,Baclofen, Neurontin,
Zofran,Pulmicort/Splenda,PrednisonePRN,
NPO tubefed continuous elecare 24 hours/day
It can be hard to discern between the two.In the case of Sandifer's, the child's head and neck may rotate to one side and the legs and feet to the other. Commonly the child will arch their back, and stretch out. The child will look stiff and may have periods crying, less commonly they may also go very quiet. These episodes can last for 1-3 minutes. http://www.marci-kids.com/sandifers.html the link above shows an animated example of sandifer ssyndrome HTH
Sep 02, 2008
jessicalynn
Brent 2 years old,
Birthweight 12 lbs 3.3 oz!
Very severe GERD,LPR,FTT
Severe esophagitis/scarring
Paraesophageal Hiatal Hernia,
Esophageal Dysmotility,
Food impaction,Aspiration
ALTE,Dysphagia,Odynophagia
Eosinophilic Esophagitis,Severe retching
Severe allergic colitis/malabsorption
Susp eosinophilic colitis,chronic diarrhea,
Laryngomalacia,Gas/Bloat Syndrome,
Visceral Hyperalgesia,GI Dysmotility,
Chronic infection(ear/sinus/lung)
Adenoid/tonsillar hypertrophy
Gait abnormality/bowlegs,widened growth plates
Susp Vagus Nerve Damage
Surgeries, Nissen fundo,hernia repair/
reconstruction,esophageal dilation,gtube,
ear tubes,adenoidectomy
Bronchs w/ BAL's,lung biopsy
Upcoming scope/colonoscopy
Manometry testing in Oct.
Meds: Nexium,Zantac,Baclofen, Neurontin,
Zofran,Pulmicort/Splenda,PrednisonePRN,
NPO tubefed continuous elecare 24 hours/day
http://www.marci-kids.com/sandifers.html
Sep 02, 2008
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
thanks everyone. Joslyn has not done this in a bout 2 weeks now. Since we put her back on Zantac. But I came across that and I got nervous. I think it is the "normal" arching. She does not twist her body... so I feel better! Thanks for all the responses!!!!!
Sep 02, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
That link has great demonstrations. Thanks
Sep 02, 2008
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
that link is great! thanks
Sep 02, 2008
katiesmommy
Tracey, mom to Katie. Diagnosed with reflux at 3 weeks and put on Zantac. At 8 months old she was removed from Zantac as it was giving her migraines, currently on Prevacid. Switched to Elecare since she is not gaining weight; trialing solids after being off for a month. Geneticist said reason she isn't gaining weight is she is stubborn. Upcoming appts.: Neurologist for developmental delay and EGD scheduled for September. She is one funny baby!

Hi Jacky! Katie did that all the time while eating! She would go for up to 10 hours without eating and thus couldn't sleep b/c she was hungry but eating hurt so it was a vicious cycle. From my reading the treatment for Sandifers is getting the reflux under control. Looking back she probably did have Sandifers but since her pedi is so incompetent regarding GERD that even though I was describing it he never took this as an indication that her reflux was as out of control as I was telling him it was.

I saw your Where is pooky? thread but didn't tell you how adorable Joslyn is! She is a cutie!

Sep 02, 2008
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
thanks you!!!!!!
Sep 03, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
Photobucket
Hi Jacky! Elyse was dxed with Sandifer's at 3 mos; we had been struggling with her reflux all along and that part got worse and worse to where we could hardly hold her. She was dxed in PICU by her intensivist and the GI agreed when she was there for her intestinal surgery. It is HORRID to deal with, but the only way to "fix it" is to control the reflux. It got a lot better around 4 mos when she FINALLY got put on prevacid after zantac, pepcid, reglan did nothing. Prevacid also almost completely stopped her gagging/blue apneic episodes when nothing else did.
Check with your
doctor first!