milk coming out the nose

[Anonymous]

laura, Trace has torticollis and needs PT, and they want him to see a chiro. now since its so bad.
did jonah have PT?

[hellbennt]

no he didn’t- we ‘caught’ it early enough I guess and his was the type to be reflux related/sandifer’s- it doens’t always have to be related to the reflux…anyway, he was put on PPIs early on and that stopped it from worsening & then it stopped all together…

[Anonymous]

Shelby, our doc told us that Sandifer’s can only really be diagnosed as a process of elimination. As others have said, there’s no real test, but the EEG is to rule out other causes like seizures, slow brain waves etc. In our case, when everything else came back clear, she was given the diagnosis of Sandifer’s.

[Anonymous]

That is what I was afraid of. Justice has only done the seizure looking thing 3x. I am so afraid that I saw wrong and it is nothing at all. I know I should still get it checked out though.

Another question. Justice is being really stiffed legged recently. I don’t know if that means anything. He won’t wrap his legs around me. When I hold him his legs just stick out.He just won’t bend his legs. Today he is fine. Bending his legs fine, but yesterday he just would not bend his legs. Probably nothing. Just asking just in case.

[Anonymous]

Shelby, I know it can be scary, and I’m sure it’s nothing, but I do believe it’s best to get things checked out. There was once a mom on this site whose child presented with what seemed like Sandifer’s but turned out to be infantile spasms. I know that this is not your situation, I’m just trying to illustrate why I like to take the better safe than sorry approach. Then at least you can get some peace of mind.

Hailey sounds a lot like Luke at that age. I always said that was “unhuggable”. I tried so hard to hug and hold her, but she would always stiffen her legs, arch her torso, throw her neck back, scratch her face, gouge her ears… it was awful. You couldn’t hold her but you couldn’t put her down. When I described the limb stiffness to my ped, he said he wanted the EEG to rule out myoclonus. As I said it turned out to be Sandifer’s.

I always like to videotape the behaviours I’m talking about, like Thais suggested. It can be hard to catch them, but I’d keep the camera ready and cued up at times when I was expecting an episode- typically during or after a feed.

Good luck and keep us posted.

[Anonymous]

My daughter does similar things when she is bad.

She won’t bend!! like when i try and put her in the carseat her legs are straight and stiff and she won’t bend them. Also when she cries her legs will be out straight and tensed up.

She arches back and tilts her head to one side. Also when she starts to feed her eyes roll around in her head but tbh i thought it was because she was tired but now i’m thinking it isn’t that at all!!

She also pulls on her ears and rubs her eyes and nose really badly until she cries and they are bright red!

Sometimes the reflux is so painful for her she jumps everytime she refluxes its awful. Even on the meds she is still having bad days.

[Anonymous]

Shelby,

Myles sometimes stiffens his legs when he’s constipated or has a tummy ache. How often does he do this?

Natalie,

Sounds like sandifer’s. Her PPI dose may not be high enough. My son did not improve until he was finally put on 30mgs like marci-kids recommends. A scary, high dose I thought, but he was so miserable I knew I had to try it. He was better within a few days and a new baby after 10 days.

[Anonymous]

Hello and i know that you had posted this topic a while ago but i just got my computer back from the shop. my daughter is 7 weeks old and has severe sandifers. the milk comes out of her nose and she then proceeds to choke and look like she is having a seizure. this started the day that she was born. i call them “episodes”. bbefore she got on prevacid 1.5ml2xday she was having these episodes 7-10 times a day. now on the prevacid she still has them but less frequently. they do look like seizures, and they are horrible to observe. i have thse episodes videotaped on my digital camera, so maybe i can somehow transfer it to the computer so you can see. keep me updated!!!

eileen

Aiden 12/3/01

Grace 8/17/06 reflux,sandifers, viral meningitis, enfamilAR, prevacid 30 mg

[Author]

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