http://i147.photobucket.com/albums/r305/melonymccarty/sandifers002.jpg

Sorry I can never get these pics on here as normal sized. This is a pic of Kyleigh as she always is. This is the position that she sleeps, sits, cries in etc. The dr said it was a prime example of Sandifers Syndrome. Hope this helps those who are wondering.

I have pics of my son like that. :( He was diagnosed with Torticollis though. Are the two somehow related or do you think Noah may have been misdiagnosed? This definitely makes me wonder. He rarely does that anymore, but still keeps his head tilted to one side.

Oh Melony that is so sad looking! Poor little thing:hug:

Not sure, what is torticollis?? The dr saw her like this the other day and asked about it and Isaid she is ALWAYS like this. And she said "Have you ever heard of Sandifers, because this is a prime example of it". Dunno, maybe we were misdiagnosed. Explain what torticollis is, if you don't mind.

If memory serves correct sandifer's can cause torticollis. Basically, torticollis is a tensing up (stiffining) of the neck muscles into that position. A child who is in that position frequently can develop a torticollis.

I just Googled torticollis and you are right Jessica. Did not know her being in this position could cause some other problem, though. Good to know.

It may be worth a question to the pedi-ot to see if there are some range of motion, massage techniques that you can do so that she is less likely to develop torticollis....it may be worth asking :) Glad my memory is not completely gone!!

Noah was diagnosed with Torticollis at his 2 month check-up and has been to two physical therapy appointments so far. She basically just checks him out and gives us stretching exercises so that we can work with him at home. It's been almost 3 weeks and I can already tell that he is doing sooo much better! I wish I knew how to get this picture off my phone so I could show you what he looked like. His head is almost always tilted to the right and he can't fully turn to look in that direction because of the stiff neck muscles. Here's how he typically sleeps.

http://i4.photobucket.com/albums/y112/manda40475/000_0281.jpg

Wow, Melony and Amanda! Thanks for posting those pix (as heartwrenching as they are!) Michael's not nearly that severe, but I fear he'd get there if we don't intervene SOON.

Noah isn't like that all the time, but that's generally how he sleeps. When I get home, I'll try to find a pic with his head tilted while he's awake.

I don't have any pictures of Eric doing this because I'm a lame-o
and didn't take pictures of him when he wasn't awake and happy.
I didn't like the way it looked so didn't want any pictures of it KWIM?

Anyway,
Eric still sleeps like this and loves to have me hold him while he arches back when he's playing. He also likes to hang kinda sideways upside down on the couch. He also does this pose while eating sometimes.

The ENT says that it's "classic" air way obstruction posture. Interesting huh?

I'm VERY curious to see if he stops doing it after his tonsils/adenoids are out like the ENT thinks.

Eric's head also tilted to the right as an infant, but once he was able to keep himself more upright and he could stand, no more tilt. I bought him an excersauser when he was stronger (about 6 months old) and this helped a lot with the tilt. This and changing the head of his crib. He always arched toward the outside of the crib, so switching the head of the crib made it so he arched with the other side. well.... I thought I was helping anyway. LOL

Doing this WILL help with flat spots though, if you babies have that problem.

I guess I do need to check with her ped just to make sure she doesn't develop torticollis. Because she is always tilted to the right side with her head up. She never goes the other way and that is how she sleeps. I can imagine keeping your head in one direction like that could cause a few problems. I have never noticed whether or not she can turn her head in the opposite direction or not, but I will certainly pay attention now. Thanks for the info; and you're most certainly welcome, Aim, that is mainly why I posted the pic.
http://smileys.smileycentral.com/cat/23/23_3_22.gif (http://www.smileycentral.com/?partner=ZSzeb001_ZNxmk895JHUS)




http://www.smileycentral.com/sig.jsp?pc=ZSzeb095&pp=ZNxmk895JHUS (http://smiley.smileycentral.com/download/index.jhtml?partner=ZSzeb095_ZNxmk895JHUS&utm_id=7923)

Wow! Thanks for posting the pics, gals!

Sad to see what these little ones go through... but very educational.

Maya always sleeps like this, but I didn't think it was pain related in her case. I had no idea it was sandifier's I thought that was a seizure like thing.

Thank you all for posting these pics. I had searched all over the net and not been able to find pics of Sandifers and Keegan always seemed to have his head arched in a particular way but seeing these pics makes me know that it was not Sandifers, probably just a preference. This reassures me. I am sorry your children suffer from this however. How is it corrected?

K sleeps like that too but she sleeps on her belly with her head to one side tilted upwards:sad2:

It's a real classic sign and it breaks my heart to see all these babies like this. Only yesterday she was asleep at my mums house in the car seat with her head tilted into the air and my mum asked how she could sleep like that and i said its the reflux.

She still does the tilting her head from side to side so it touches her shoulder ALL the time so i know the meds aren't working fully yet (or need a higher dose maybe?)
I will try and post a video clip i have as it shows it really well!

From all that tilting of the head due to reflux, the muscles of their necks must be really sore and in my case, when my neck muscles are sore ( I have a neck problem, being corrected by chiro) all I want to do is tilt my head from one shoulder to another to make it better. Sort of stretching. I wonder if that's what they are doing.

wow. thanks for the pics. When Naomi was newborn for a few months I used to think she had torticollis and even had the doctor look at it. He thought it was torticollis too, but she has since outgrown this. It 'could' have been this and she has gotten better since starting her meds. Could this be??? unsure. Thanks for the pics. Nic

Thanks for posting those pics! They sure do speak volumes. :( Iain used to sleep with his neck crinked up, too, but as I did hear Sandifers mentioned it was pretty late on and in short order we discounted it as a possibility since it was not all the time and only when he slept or was in pain and really refluxy. It did not progress. For you to catch this so soon means you can get some help for it and that is a good thing to be proactive with.

I think I will set up a usergroup for Sandifers, if anyone is interested in that? Let me know.;-)

A usergroup has been set up for Sandifers now. Feel free to join via your user CP. :smt041

Thanks Leigh!!!

I'm joining up!!

I also noticed K's eyes would roll when she started to feed due to the acid rising up and hitting the back of her throat (i'm breastfeeding so its hard to feed completely upright!) she has stopped doing this now so the meds do help some:yahoo:

Thanks for those pics... my little Jack does exactly that; no matter how much we try to reposition him. The OT that we see says that it is a coping reflex that they develop because turning their head usually to the right and hyperextending their neck changes the length/shape of their stomach and over time they learn that it hurts less like that.

She showed me a position for feeding (even with the tube) where you raise their left arm above their head, which should help without them having to be little contortionists; it was something that her dept head learned at a conference.

wow thats what miki does all the time i just asumed it was cause she was uncomfortable from reflux

She showed me a position for feeding (even with the tube) where you raise their left arm above their head, which should help without them having to be little contortionists; it was something that her dept head learned at a conference.

WOW! I did something right. LOL
Eric liked to eat almost upside down with his face turned away from me and the bottle, and I always freed his left arm and he put it over his head. I thought that freeing that arm made it easier for him to arch and eat, and I was right. WAY cool!
Thanks for sharing that

My son was to diagnoised with TOrticollis. It turns out that his muscle weren't fully developed at 2-3 months. He was born at 38 weeks and is a twin. I think Dr's judge too quickly but it's better to treat Tort if its diagnosed early. Good luck.

Bless her heart! Carson would do that, at one point I thought he was having seizures, only to find out it was reflux related... and by the time his reflux was controled he had developed tortocolosis from it...
getting physical therapy was the only thing that helped with that...
I am praying for her!

Carson would do that, at one point I thought he was having seizures, only to find out it was reflux related

I remember thinking it was just a strange Eric thing that only he did. When I found out that it could be reflux related, I was very surprised, but at the same time I felt better having another reflux symptom to go on. It's really hard to get doctors to listen when your baby doesn't spit up or puke.

Here is a picture of Adallin when she was a lot younger before her tube feedings her therapist has worked with her sandifers.
http://i60.photobucket.com/albums/h12/meow1131/100_0417.jpg

Here's the picture from my phone from when Noah was a few weeks old. I finally managed to get it to the internet.

http://images.kodakgallery.com/photos2526/1/77/59/21/3/9/903215977107_0_ALB.jpg

How do I find the user group for Sandifer's? My son has it and I am very interested in talking to mommies with GERDlings who have Sandifer's!!!

Thanks,

Melissa

By the way, my son`s torticollis was caused @ birth, where they tore up his sternocleidomastoid muscle....caused severe Plagiocephaly...2 Doc bands later + after 2 years of PT, OT and speech, he is fine=all these were caused by torticoliis....keep in mind, MANY doctors down play torticollis BUT it can cause major delays...........I hope that your son will get help with S. syndrome treatment :hug:

Harry and Archie were always like that and Harry DID get Torticolis (sp) from the constant neck arching. Poor little mites :( Archie had more pronounced Sandifer's but never got the torticollis.

Kate x

Sam never got torticollis but he has mild positional placiocephaly. Sometimes during his SS episodes he holds his breath and his face always gets red....his body gets stiff and his arms go out from his sides with fists clenched. All this is usually followed by a very loud scream and when I pick him up he stops immediately. They look exactly like the seziures called Infantile Spasms so he had many neurological tests at Children's Hospital until they figured out what the issue really was.

All his SS episodes can be prevented by never laying him flat on his back except for diaper/clothing changes.