Home › Forums › Special Topics › Sandifer's Syndrome › Sandifers syndrome?
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March 15, 2006 at 8:42 am #3878AnonymousInactive
Okay, I have never joined a forum before, but after reading the past information posted on this site regarding Sandifer’s syndrome, I realized it is time to finally join.
My son, Jonah, (ironically the same as hellbent’s son), is 4 months old. I unofficially diagnosed him as colicky the first 3 months, and he is doing much better than before. My husband, always calls him a “jerky boy” because the kid is so squirming, is always moving, etc. I never really took notice of these behaviors until recently, because this past Sunday, after we drove two hours to a relatives birthday party, Jonah has 3 seizure like episodes where he stopped breathing, his head was cocked to the right, and he turned bright red. I seriously thought he was having a seizure, after I spoke with the doctor, they told me to take him to the hospital. At the hospital, Jonah was admitted for further testing, the monitored him over night to rule out, sleep apnea and to monitor his heart rate. We were discharged the next day, with a team of doctors saying “I think he has reflux.” I asked and asked if this could be related to a seizure like episode, because the entire stay at the hospital Jonah did not exhibit the behavior that brought us in. They all said he looked great, was so cute, and presented as really healthy. Well, as soon as we got home, after a 30 minute car ride, Jonah had another, what I now call a spasm, where he got stiff, head was cocked, etc. These “spasms” only lasted about 7 to 10 seconds. These “spasms” were happened several times that evening and we debated taking him back to the hospital, but they did not seem to be hurting him and he was so happy and content after each one. Thus, I decided to stay home and track all his behaviors and patterns the next day.
The next morning, Jonah did the “spasm thing” eight times between 8:30 am and 10:30 am, I called our doctor and she had me take him in to see her, she didn’t seem to be too concerned at all. She recommended that we get an xray of his vertabrae to rule out anything, but she indicated that he seemed really good neurologically. I still wasn’t convinced, and then I found this website.
Lastnight, as we were getting ready for bed, Jonah had another “spasm like” episode….. but went to bed okay, he is always really fussy at night and when he is tired.
Lastnight, as I was ready information on his spasm like behaviors, I came across Sandifer’s syndrome and read hellbent’s documentation about her son. My husband and I about flipped, because your son’s name is Jonah like ours, and the description of behaviors fit Jonah exactly.
He has always doen the eye rolling back in his head thing when he eats, (I thought it was weird but just chalked it up to being him), he is always wiggling, and straightening out his body and grunting, he hates to sit or lay down for a long time, he always wants to be standing up and straightened out, he arches his back during feedings, and sometimes just when he is laying on the ground, and now he is doing the “spasm-thing” at times. Otherwise, Jonah is a happy, smiley, content, little boy and we see glimpses of relaxation with him.
I guess my question in posting all this, is should I schedule for him to see a GI specialist right away?
And, do any of you think that this could be related to a milk allergy?
I hate to think that my kid has been in pain all this time, but it all seems to make sense now after reading everyone’s input.
Thanks – Stars
March 15, 2006 at 10:07 am #3890AnonymousInactiveHi Stars. What a scary ordeal that sounds like. My 9 month old also has Sandifer’s which has been controlled sometimes more than others. But she tends to do it during and after feeds more than anything. We are now scheduling an EEG to rule out seizures. Did your son have one done in the hospital? It is my understanding that a child can have seizures, but appear otherwise neurologically normal on visual examination, that is why I’m asking. I’m not trying to scare you. What tests did they do to diagnose him as having reflux? What concerns me about your post is that you say “he stopped breathing”. Do you mean this literally… i.e. was he turning blue? My older child has had seizures and she turns blue, but her head is also cocked to the side during the event. She is an otherwise normal child with no neurological deficits. Other than what you describe in your post, what was the rest of his body posturing like? Was he eating normally when he was in the hospital? I am asking because you mentioned that he did not have any episodes in the hospital during his entire stay.
I apologize for all these questions. As far as seizures vs. Sandifer’s goes, I really like to take an approach of better safe than sorry. That’s just my opinion though. There are others I’m sure who disagree. There is some good information on Sandifer’s on the website http://www.marci-kids.com . Also, if they believe it is Sandifer’s, what are they doing to control this from a medication standpoint?
March 15, 2006 at 10:10 am #3892AnonymousInactiveAbsolutely, and if your doctor doesn’t take you seriously, get a new doctor. If this is Sandifer’s, then your babe is in pain and needs to be treated ASAP.
It could be a milk allergy or it could be something structural, it’s hard to know without some experimenting. Are you breast feeding? If so, you could try an elimination diet. If you’re bottle feeding, the first step is to a hypoallergenic formula like Alimentum or Nutramigen; some kids do well on Good Start as another alternative.
March 23, 2006 at 2:21 pm #4500AnonymousInactiveFirst of all Congratulations on being a great advocate for you son!! Great job on doing your own research to find out whats wrong! You’re a great mom!
A lot of reflux babies are not necessarily “allergic” to milk, but intollerant to milk. Milk is very hard thing to digest, strange but true. Don’t feel bad for not “putting the pieces together” earlier. Most docs around the country tend to think reflux is ‘no big deal’ anyway – they’re wrong.
My son had sandifer’s sydrome until I got him on the highest dose of a PPI (Prevacid). DON’T GET ZANTAC – that is the first reflux med that doctors want to prescribe. Here’s a link explaining why zantac doesn’t work and why you shouldn’t have a pre-mixed form of Prevacid. There is a link at the bottom of the page to print out and take to your docotor. http://www.marci-kids.com/dosing.html and here is the direct link to the “rigid body posturing” http://www.marci-kids.com/rigidbodyposturing.html by the way, I always knew about my son’s reflux because he had sugery on his esophagus when he was 3 days old. No one ever told me about Sandifer’s, they just said “yeah, that arching is from reflux”. There where many times when I thought my son was going to knock me out because he would arch and twist and “buck”. The acid coming up in the esophagus burns and irritates it so much it triggers the brain to do those “seizure-type movements”. I only just heard about the movement having a name/syndrome attached to it a few months ago. Yes, get your son an appointment with a GI right away (if your regular ped won’t prescribe meds). And if the GI is booked out for weeks, don’t settle for that, ask to be put on a waiting list for cancelations, or tell them that it is a very urgent matter and maybe they can get you in earlier.
March 23, 2006 at 5:07 pm #4511hellbenntKeymasterhi there jonah’s mama!
I’m guessing that they did an EEG in the hospital and I’m also guessing it came out normal…if this is the case, then YES it’s moar likely sandifer’s (yes all that you describe sounds like sandifer’s but I’m no doctor) & I’d get to a ped GI ASAP…
once jonah got on a ‘proper’ dose of PPI for his weight then the symptoms went away…
so glad you found us,
so glad info I posted helped you &
so glad to ‘see’ another Jonah
~laura
March 24, 2006 at 12:03 pm #4569AnonymousInactiveSounds like sandifers. Same thing happened to us when our daughter was 8 weeks old. Spent a week in childrens after a couple of blue spells and seizure like activity. I wouldn’t leave until they ran the test i wanted. Please call the ped gi everyday asking for a cancellation. Tell them it is sandifers, have your ped. prescribe a ppi now so it will get into his system. I know its scary, but you are doing an awsome job diagnosing this. It’s crazy how we have to diagnose our babies after seeing numerous docs. and hospital stays. You have to make them listen!
March 24, 2006 at 3:51 pm #4597AnonymousInactiveSarah, just wondering what tests Ryann had done? What were the outcomes?
Stars, I also just wanted to say that sometimes seizures are really seizures, and not Sandifer’s. I don’t say this to scare you, but I truly believe that it’s better to be safe than sorry when it comes to the brain. I know that we tend to think that all posturing is Sandifer’s because this site is for reflux, but the only way to be sure is to have it diagnosed (I believe by EEG). I am not telling you to do this, I am just very passionate about this subject, so I am playing devil’s advocate to make sure that you get all the information you need. There’s a mom on this site who described her son’s symptoms and everyone including her doc said it was Sandifer’s. It turns out that he was having seizures, and this was found by EEG. OK… I’ll shut up now.
I hope that your son is doing well. Please keep us posted.
March 24, 2006 at 8:01 pm #4605AnonymousInactiveWell, today was a bit better. I got ahold of the Doc and got some Previcid tonight. We started 15 mg tonight, and hopefully it starts working soon. How long was it before you all started to notice a difference once your kiddos got on meds? We also got a referral from our peditirican to see a GI, so hopefully in the next week or too we can get into get some more help. Though I am hopeful that the new meds will make a difference and we won’t need to do any more invasive testing. I’ll keep you all posted, thanks so much for all the help.
March 25, 2006 at 1:00 pm #4620hellbenntKeymasterit was day 12 for jonah- it was THAT obvious…we could see the PPI ‘working’ before then, maybe around day 4-6, but day 12 it was like “whoa!”
June 15, 2006 at 11:38 pm #9872AnonymousInactiveI know time has passed since the last reply, but I felt the need to repost. When my son (Jonah, like the other two posters!!) was an infant, he was diagnosed w/ reflux. He made quite a mess during the days, but nothing seemed medically serious. When he was 8 mnths old he started having seizures. He spent 8 days in PICU and every test imaginable and they couldn’t find anything wrong. He saw a neurologist for a year and still they could find nothing wrong. Today he is an active 3 year old, but has had stomach problems. He saw the Gasteo. Dr. and she mentioned SANDIFER’S. While reading other posts, this is almost exactly how MY Jonah was. It is nice to finally know what he had. It was very hard having a sick boy at home and by the time he went to the DR he was laughing and playing. I began to feel I was imagining it. I only wish we were able to diagonse him soon and avoid all the other neuro. testing.
June 16, 2006 at 7:04 am #9878AnonymousInactiveWe just had an EEG done to diagnose Sandifer’s. I’m so glad that everything turned out fine with your son. My 2.5 year old has febrile seizures and so I know how awful it can be.
I know that would like to have been able to avoid the testing, but I really think it’s the only way to be sure of what’s going on.
This is just my personal point of view, but it’s really better to be cautious when it comes to seizures. You can not tell the difference between Sandifer’s and seizures in infants or young children just by looking. The only way Sandifer’s really can be diagnosed is by having a normal EEG and then seeing a GI. Sandifer’s can be mistaken for seizures otherwise, or worse, seizures can be assumed to be Sandifer’s and go undetected. If you see that your child is having seizures, I would be careful not to assume that it’s Sandifer’s just because a child has reflux. Children with seizures can also have reflux. I know I’ve said this many times on this site, but I would feel awful if someone’s child was misdiagnosed.
July 9, 2006 at 7:13 pm #11225AnonymousInactiveHi Everyone,
My son Bryson has SS as well and I’m scared!!! Will he live long, does he out grow this? Does anyone have older children who were diagnosed with SS and are now living a normal live. How did you deal with your other kids? Did any one have more kids? My son is 3 months and hates going around people ( even my mother). My husband, son (3 years old)and I stay in the house now because of it. Will he out grow this? He to has a flat Hemangioma on his face between his eyebrows. I’m very worried. How did everyone work or do you stay home? I’m so glad I found this site. HELP A MOTHER IN DISTRESS!!!!
July 9, 2006 at 8:20 pm #11227hellbenntKeymasterhi deanna,
you emailed me
and really, ‘all’ your baby needs is a GOOD (high) dose of a PPI and you will start to see the sandifer symptoms dissapear. Really!
Jonah had it and is fine! he’s 3 yrs old now. you ask about further children,well I used to wonder about this, too! but I’m expecting any day (minute! LOL) now my next baby. Jonah was reflux & med free at 1yr so after a year of really enjoying him (ok I enjoyed him that first year, but to be very honest, a lot of the beginning was a nightmarrish blurr) I got pregnant when he was 2…and here I am, due 7/17!!!
I cant stress enough how important it is to find a ped GI who will work with your baby and prescribe the ‘higher’ doses that will make the Sandifer symptoms dissappear…
so glad you found us!
~laura
July 9, 2006 at 8:51 pm #11228AnonymousInactiveKaelyn had Sandifer’s as well and it cleared up once she was on the correct dosage of prevacid. As Laura said, the first year is a big blur, but it does get better. My husband says we must be crazy because we decided to have another baby even after the nightmare of reflux with the first. I know it doesn’t always work this way, but so far the second one has been much easier than the first. (I panic every time I say that and worry that everything is going to fall apart any minute now!)
July 9, 2006 at 9:44 pm #11233AnonymousInactiveDeanna,
I agree with the others. As Laura said, get a good GI and once your son is on the right meds he should feel better. Who diagnosed your ds and what symptoms does he have? What med is he on for his reflux? I’m not sure what your doctor told you about Sandifers, but whatever they told you seems to have really made you afraid. Sandifer’s is a pain response from the acid coming up into the child’s throat. It’s not life threatening or harmful. My daughter has Sandifer’s and needs to be on medication to control her reflux to help with the symptoms. As for not liking to be around others, that’s not a sign of Sandifer’s. It could be personality, or it could be that he’s stressed out from being in pain due to the reflux. I would seriously consider asking your doctor for meds if your son isn’t on any. http://www.marci-kids.com is a great site regarding PPI dosing and also has some info on Sandifer’s, I believe. Hang in there. I know how hard it can be.
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