Posted By Posting
Jan 16, 2003
Kirsten
Sandifer's Syndrome
Does anyone have any help for me out there? My son who is now 19 months old was diagnosed with Sandifer's Syndrome at 4 1/2 months of age and I am having such a hard time trying to find any information other than it is a neurological disorder that is usually with a reflux baby. He has been on Prevacid since 4 1/2 months old when we finally took matters into our own hands and took him to a GI specialist. His dose of Prevacid is 30mg/day. When my son was 16 months we had been slowly reducing his Prevacid dose to almost nothing for a month and then completely quit Prevacid-after 3 weeks he had a "siezure-like" episode at his daycare which effected his motor skills for a period of 1/2 hour or so. Tomorrow we are going to see a pedi-neuro specialist. I just wonder if anyone is out there that has a child with this sydrome that can give me some advice, anything!!!
Jan 16, 2003
Anonymous
How scary, Kristen. My understanding is that Sandifer's refers to the arching that babies with esophagitis exhibit. That it's not neurological, but rather an expression of pain.
Jan 16, 2003
Anonymous
sandifer's syndrome
Hi, My daughter was also diagnosed with sandifers syndrome at approximately 6 months of age. She turns 7 next month so this was a while ago. My understanding is a little differnet than yours. We were told it is a reaction to the reflux that looks neurological in nature but really is not. The children posture and arch to relieve the discomfort from the constandt reflux. She had neurological testing etc. and everything was OK. When her reflux was under control as she got older and had a nissen, etc., those symptoms that were related to sandifers syndrome disappeared. I do agree with you however that there is very little information on this diagnosis out there. The only other thing I remember at the time is that is was often related to kids with reflux that also had hiatal hernias. Sure enough at 8 months of age, our daughter was found to have a hiatal hernia. When re-herniated at the age of 16 months and was refluxing severely again, the symptoms reappeared. Her symptoms were arching her back and neck. These symptoms could look like seizures but were not and she never had any difficulty with her motor skills related to these symptoms. Best of luck. Follow up on the current symptoms and see what they find. Stephanie
Jan 17, 2003
Kirsten
Sandifers Syndrome
Thank you for your response. There are not many doctors that even know of this syndrome. When your daughter re-herniated at 16 months, did she begin cronic coughing though the night? Last friday night was like going back in time for us, our son woke at 11pm screaming in pain and was arching his back again as he did before we began treatment of Prevacid. For a week prior he had been waking at least 2 times a night from coughing, which we figured it was just another cold. Now I don't know what to do. It's like the prevacid is not working now, he has not spit-up at all in months and is not showning signs of 'reluxing'. This is just such a helpless feeling to see you child in such pain. Kirsten
Jan 17, 2003
Beth Anderson
PAGER Director and original GERD Nerd
Mother of Chris (1988) and Katie (1990)
Author of The Reflux Book
Member of PAGER since 1992
Donor since 1992
Sandifur Syndrome? Seizure? Drug reaction?
Kirsten, I have asked several doctors about this Syndrome and get different answers from each. There are also two common spellings although I'm told that Sandifur is the correct spelling of the doctor's name- I can't even confirm that. The best I can tell you is the the definition seems to be changing. If the neurologis doesn't find any signs of seizure activity, I would ask for a referral to a Movement Disorders Specialist. The reason for this is that there are serious drug reactions that look a lot like Sandifur Syndrome and gastroenterologists and even most neurologists are not well trained to look for these reactions. We covered these reactions in an issue of Reflux Digest last year. Neurological reactions CAN happen when the drug is WITHDRAWN. What you are describing sounds like it COULD be a drug reaction. Please try to get it on video tape. If you want to do some research, look up neuroleptic side effects. I just put up links on our links page. Good luck and tell us what you learn! Beth
Jan 17, 2003
Kirsten
Sandifurs Syndrome drug reaction
Thank you Beth for your response, my husband and I were actually discussing this issue last night. When my son Gunnar was first being treated by a local pediatricians office they prescribed Zantac and Reglan. We were very nervous about giving him the Reglan. After the first few doses of the Reglan Gunnar would just go into these screaming boughts that were absolutely heart breaking for us to handle. He was a strong baby and we would do as doctors told us to swaddle him real tight to make his feel secure and his little fists would punch away until they were loose and arch his back. We stopped giving him the medicine and the doctors felt is was not a reaction to that medicine, but I still wonder. Since our son had this 'episode' at his daycare and has not had any since, we know something definitely happened from the look in his eyes and they were a dark purple underneath like he hadn't slept in months, should we be video taping his screaming fits when they occur? I will check out the link. Thank you for your help! Kirsten
Jan 17, 2003
Anonymous
sandifer's syndrome
Hi Kirsten, I thought it was very interesting what Beth had to say about the drug reaction. We did not personally see any of those symptoms with our daughter, but it is definitely something to look into. When Becca re-herniated at 16 months, she started arching again with her neck and she would cough after being fed. We had to put her back on the tube because she started to refuse oral feeds again. After tube feeding her 6 ounces of food, she would begin to tilt her head and neck and act uncomfortable although she never really complained. There was a distinct correlation between the feding and the symptoms. To make a long story short, about a month later she was diagnosed with a gastric ulcer. Most likely caused by her mic-key button that she had in place in ther stomach. We think in hindsight that the ulcer caused her to retch after feeding and loosened her nissen which is why she began refluxing significantly again. Again good luck with your doctor's appointment and let us know the turnout. Stephanie
Jan 21, 2003
FundoMom
Sandifer's syndrome
There is an article about Sandifer's syndrome located at http://author.emedicine.com/PED/topic2039.htm Hope that helps.
Jan 22, 2003
stephanie
re: article on sandifer's syndrome
that article was extremely helpful. It describes the exact symptoms my daughter had many years ago and it is also exactly how our docs described it. Thanks.
Jan 23, 2003
Kirsten
article on Sandifer's syndrome
Thank you for posting that article. I've read it before and often do refer to. I think it helps to re-read information somtimes to reasure yourself of things to be aware of. It is one of the more informative bits of information out there. One thing I don't understand is the administering of Reglan for this syndrome, to me it was some scary medication prescribed and I find it odd that they mention it as one of the many prescribed meds. Thank you to everyone that has given us wonderful bits of information. Kirsten
Jan 23, 2003
Anonymous
re: reglan and sandifer's syndrome
I think the reason Reglan is mentioned in this article is becuase they are saying that in order to treat the syndrome, you need to treat the underlying cause which in this case is gastroesophageal reflux. At the time the article was written Reglan is a primary medication used for reflux. I know some people have had a lot of problems with reglan, but both of our daughters were on it in different times in their lives and we only had success with it, with no side effects. Our little one has used it as recently as this past October and it always helps to get her stomach moving and cut down on her symptoms when she has a reoccurrence of her most severe reflux symptoms. Stephanie
Apr 11, 2003
Anonymous
can you email me the article on reglan that has supposedly critical side effects? my daugher is taking it and i would like to be on the lookout. my email is heidijoey@aol.com
Jan 23, 2003
Kirsten
sandifer's syndrome
Hi stephanie~ The neuro that we went to was absolutely wonderful! Both my husband and I walked away form our visit wishing she was our son's pediatrician! She was knowledgable about the syndrome and very informative and was actually the first doctor our son was not timid with. She felt our son Gunnar had a "severe silent reflux episode". That's the simplest way of putting it. She did not want to put him through tests at all because she really felt it was not necessary. A big relief! Gunnar has finally quit coughing through the night(after 3 weeks of coughing and at first us thinking here we go he has another cold), as of 2 nights ago that is. We started giving him the Prevacid @ 30mg in the packets (oral suppression) a week ago and I think this is really starting to work. He actually gets excited to drink his 'special juice' each night, we used to have to battle with him to take the choco-base stuff. Thank you for your help...please stay in touch! Kirsten
Jan 23, 2003
Anonymous
re; visit with neuro
I am so glad to hear the visit went well and that they are not concerned about anything seriously wrong with your son. It can be such a scary thing. We saw a neurologist in the ER when Becca was only 10 weeks old. She made some very inaccurate comments about her development. We followed up with a developmental pediatrician a week later who said her development was fine at that age and it was the reflux that was causing her problems, not anything neurological. Guess which one turned out to be right- Becca is in first grade and is beautiful and developing accordingly. (a mother's opinion, of course) I am also glad to hear that the coughing has subsided and that you are getting his meds into him successfully. Best of luck. Stephanie
Jan 23, 2003
Kirsten
neuro visit
You're right in that it is scary how some doctors are so radical and you're already freaked out from all that that you've been through, and at time total sleep deprevation which will hinder your own intelligence for decision making! I think the best story I have read by a parent of a child with Sandifer's syndrome was where the mom actually called the pediatrician at 2 or 3am and had the pediatrician listen to the so-called 'colic' her child had and was in about the 3rd hour of her child screaming in pain-the next day her pediatrician had her into a GI specialist! I had almost resorted to doing the same thing! I have been asked by a dear friend of my mothers who is the chair person for Children's Miracle Network to be a part of their telethon in May. She wants us to be interviewed along with Gunnar's GI Specialist just to get awareness out there of this syndrome. Very exciting I think and I want parents out there to know there really is help, and it is okay to ask for help when you've working and totally sleep deprived and so many emotions just run through you! so we'll see what happens! Best of Luck to you and thank you for your help! Kirsten-Coeur d'Alene, Idaho
Jul 15, 2008
nunco
Sandifer's
My son had 3 episodes with in a 24 hour period. It does look just like a seizure and he did not behave normally for a couple days afterward. There is not a ton of information out there or even places for support - it is great to find this site and see other parents commentary. Even though it is not neurological it can be physically exhausting to a child and leave them not wanting to interact. I am wondering what if anything ppl have found to be helpful. Right now we are burping him as much as we can and keeping him upright for at least 30 minutes after feedings. He also is on Protonix, which he hates and gags on constantly. I knwo this is an old thread but I hope to hear any new info that anyone has to offer :) Thank you in adavance!
Mar 29, 2010
laura's mom
sandifer's syndrome
Hi, we have a 9 month old daughter that was born full-term, and we have struggled with Sandifer Syndrome since about 2 months old - we've done the EEG, we've done the MRI, we've tried the prevacid, nothing has helped. We were under the assumption that she had vision problems until a week ago when we were told by her vision specialist that she has perfect vison, and that we should pursue other developmental issues. Has anyone else with a Sandifer baby had developmental issues with their child? We are concerned about autism at this point, as she doesn't relate much with us or others, but also wonder if maybe that's due to the amount of pain she's in and the exhaustion from all of the episodes (she has about 4 a day and they last about 5-10 minutes each). Any one else with similar experiences, your help would be greatly appreciated!
Jun 08, 2010
lauren's mommy
Dysphagia/Reflux/Aspirations/Sandifer Syn
Hello! I am a mother to a beautiful baby girl who is 3 months old. Since birth, I've noticed unusual movements, excessive arching, severe vomiting, and choking. I would constantly ask the Peditrician's but they said she was okay. I finally demanded at 2 months a referral to a Ped GI since feedings were absolutely miserable and she wouldn't hardly eat. At 3 mos my daughter only weighs 11lbs which puts her in the 10th percentile. After seeing the Ped GI they admitted her for failure to thrive due to she would fight her feedings. After several tests, she was diagnosed with Dysphagia, Silent Aspirations, and Reflux. Now on Prevacid 15mg once daily and we add Thick It to her formula. My daughter seems restless 24/7. She is always moving constantly. A few days after coming home, her eyes rolled back along with stiffness and not responding like a seizure. She also does the "crunches". I rushed her back to the Children's hospital. After a MRI and EEG everything was normal. One of the neurologist said Sandifer Syndrome. In response to "Laura's Mom", we are in the same boat with you. I cannot tell that the Prevacid helps. Also, there have been times where I questioned her development. I will look up charts of where they should be with age and so far she is right on track. When her reflux is not acting up, she will coo and smile. Always go with your motherly instinct. It has not failed me yet. It has allowed me to find all of this in my daughter and my 3 year old son has SVT. I found it early as well. I'm curious if anyone else's child with these conditions go to daycare. I have been worried that it would be hard for a nursery worker to deal with a baby that moves like Sandifer babies do. Also, my daughter has a tedious feeding schedule. During the episodes there's nothing that can hardly calm her except for me. Please let me know how you deal with your child in daycare that has these problems. I wish you all the very best of luck :)
Jun 09, 2010
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
Lauren's Mommy- Please try re posting this in the "General Beginner and Infant" forums. It tends to get more traffic than this one.

I wonder if you have been able to get any of her episodes on video for her doctors to see. It might get them a more clear picture of what is going on, even though she is being treated with prevacid.

I have also had concerns in the past about our daughter's development. I HIGHLY recommend getting plugged in with an Early Intervention program offered by your state. They can tell you through evaluation if she is where she should be. In our state (AR) they gave my daughter 8 months of physical therapy for free. It helped her catch up to a more normal level.
Check with your
doctor first!