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Special Needs
redhotchili83
member
Sandifers Syndrome/Tortilicollis
redhotchili83
member
Anyone have any experience with Sandifer's Syndrome? My 2 month old boy twin just got dxed with it, as well as tortilicollis and severe GERD. He has some feeding issues.
I put in the call to start the county Early Childhood eval process and see if we can get some services for his feeding and PT. Im a special ed teacher, you'd figure Id konw how to navigate this system better! 0-3 is a totally different world than school aged SPED!
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Re: Sandifers Syndrome/Tortilicollis
I know what it is a little bit. P had pretty severe tort and reflux (puked cupfuls of formula up, projectile) They thought she had pyloric stenosis but then dx her with delayed pyloric opening. P was a little under 2 months when we got the tort dx and started PT. We were pretty aggressive with the PT but personally her tort never really seemed to connect to her GI issues. I know that it CAN especially with that syndrome. M had a little bit of tort and some reflux too but her medication treated hers a lot better. My old advice is to place everything to the opposite side that needs stretched, etc. If you have insurance coverage for private PT I would start there. We did private PT until P was 7 months because 1. I didn't know EI existed and 2. once I found out it did the PT (who worked for EI also) said she wouldnt have qualified bc of her tort alone. EI can be lengthy and if you could get into an outpatient pedi PT you could get some good exercises, etc. and get a headstart! The tort can lead to all sorts of not fun things like plagiocephaly & brachycephaly.
GL
ETA: curious as to if your regular pedi diagnosed you or not. If the Sandifers syndrome is more neuro in orientation you may want to see a neuro just to be safe. Tort can be positional (cramped in utero, etc) or neurological normally.
Welcome!!! My DS was Failure to Thrive, has severe reflux and did have torticollis.
We've been in EI since he was 4 weeks because of his hypertonia.
He was eating 8-10oz formula a day and throwing most of it up. We had lots of fights with GI dr's and pedis. Eventually we ended up with 15 mg prevacid and thickened formula, it's the only thing that works. He's still on it to this day.
We didn't do anything crazy with PT and his tort. We did lots of positioning, if he was in the swing, carseat, etc we placed rolled up receiving blankets around his head to keep it straight, we positioned him so most of his toys were on one side, fed him from the tight side, etc. It resolved itself really well. He has a SLIGHT head tilt/side preference but that could also be related to his tone issues.
We struggled with Sandifer's Syndrome. Since there really is no diagnostic test for it, it was kind of one of those "he may have it" diagnoses. Because of the reflux he did a LOT of arching, arm flailing, and posturing. Neuro said it was because of GI and GI said it was neurological. We do know that he was not having seizures. I personally believe it was Sandifer's because once we really solved the reflux it became much milder and he did outgrow it. His reflux now is secondary to his tone.
Have you had a suck/swallow, upper GI, and esophogram to confirm that it's just reflux and not any type of structural abnormality, malrotation, delayed gastric emptying, etc?
DD had tort, and it was a qualifying condition for EI in MA, so I think that depends by state. She started EI PT for tort at 8 weeks, and wound up receiving it until 11 months. We did the stretches every diaper change and worked hard on positioning. She was rarely in a bouncy, car seat, or otherwise on her back putting pressure on one side of her head. I held in in the sling a lot. We did manage to avoid plagio, but that can go hand in hand with tort.
Her PT never seemed to help much, and the tort always came back when she learned a new milestone (crawling, walking). It may have been vestibular in nature as she was later found to have gravitational insecurity. She also has a seriously large head and hydrocephaly, which exacerbated her weak neck muscles.
Tort can also be caused by issues with their eyes, so we saw a pedi opthalmologist to rule out eye issues.
We're in the process of all that right now. First is the ENT because he has some wheezing/breathing/sucking issues, then off to the GI for all the tests mentioned above, then a PT and neuro eval. This kid is racking up the doctors!
DD was diagnosed with Sandifers, GERD, and congenital torticollis. The Sandifers is a symptom of GERD. DD's GERD required hospitalization and she hd a battery of tests done. She wound up dianosed with esophogeal ulcers as a result of the GERD. it took a while but they healed and her GERD got much better. She was on Axid for 6 months and we devloped a slew of strategies to help with her eating. it was try try and try again.
Her torticollis required PT. She didnt qualify for EI so we went private. The stretches were time consuming and she fought them, but they worked. She is now 9 months and her GERD is almost gone, Sandifers is gone, and her torticollis went from a 17 degree tilt to a 2 degree tilt.
It will get better. Just follow the pedis advice, get an upper gi series, try antacids, get PT and make sure you are vigilant about doing the strecthes at home.