Torticollis Moms

Anyone's DC have to get a TOT collar? We had a follow-up with the cranio-facial specialist today for Jordan's flat head. The good news is that he sees a lot of improvement and only a little flatness. He told us that the flatness was in normal range and if it was his kid, he wouldn't helmet. So, I'm very happy about that. However, he feels that the torticollis is very bad and that even though he's been in PT since May, that it shouldn't be that bad. He has been teething, sitting up, and is ready to crawl and I know the tort gets worse as they reach developmental milestones, but he gave us a script for a TOT collar.
I know it's going to benefit him, but it's just upsetting. I was just reading about it online and what it basically does is make the "bad" side of their necks uncomfortable so they compensate and hold their heads the other way - I hate the thought of it bothering him

Also, it's only to be used while they're awake and active - not in a carseat, stroller, sleeping, etc. When I was reading about it online, it also said that they must be in your eyesight - so does that mean I can never put him in the exersaucer and take a shower without taking it off?

So happy about the flat head issue but so upset right now about this.

Re: Torticollis Moms

awww...sorry your DS Is going through all this.

I think QTDImps son is dealing with this issue. Her son has made improvements so hopefully the light is at the end of the tunnel for you!!

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im sorry you're going through this. how old is ur DS? can u try another therapist? did u contact EI? DS has been with EI for about 2 months now and there is a huge improvement. GL!

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Posted by Peainapod

awww...sorry your DS Is going through all this.

I think QTDImps son is dealing with this issue. Her son has made improvements so hopefully the light is at the end of the tunnel for you!!

Re: Torticollis Moms

DS is about to go to his THIRD therapist We began EI process end of April - we began PT on our own (through our insurance) for his while we were waiting out the EI process because we know it takes a long time and who knew if he was going to be approved.
When we came up to NY for the summer, since we were going to be up for six weeks, I did NOT want him out of PT for so long so we paid privately up here in NY. AngandRich gave me a rec for the most FABULOUS PT and he made tremendous strides with her. I wish we could have stayed with her!!!
So, now we're back in FL, he's been approved for EI and they are trying to place us. I KNOW his tort is worse now because of his developmental gains but I'm just so upset.

Re: Torticollis Moms

i use the same PT as ang. she recommended her to me. i wish you could have continued with her! can u post a pic of ur DS? do u think its that extreme that the TOT collar is needed?

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I already emailed back and forth with Linda tonight about the TOT collar. She said that in 24 years, she's only used them twice and she's not an advocate of them - makes her nervous that it's plastic around his neck I do the exercises and stretching with him as diligently as I can, but it's getting hard. He is so strong and fights me. He has great range of motion, but hates to do the strengthening exercises - he used to be a great roller and I would do those with him, but now he won't do them anymore, so I tip him, but I feel like rolling is better. Isn't better though if he won't do them!!!!

Re: Torticollis Moms

do u do exercises on the stability ball? DS doesnt really like it, but i think its helping. I sit him on the ball with his hands between his legs and i stand behind him and let him hold himself up. bounce with him on it and slowly roll forward and back.

also put him on the ball in a crawling position, arms shoulder length apart and slowly roll forward and back. when hes back the ball supports him, but when its more forward he has to use more neck and upper body muscles.

also i find just by holding my thumb under the bone behind his head to hold it up has really helped.

sorry if im repeating things you're already doing!

Re: Torticollis Moms

She never did anything with the ball with him. IDK if it's because he's too little - just starting sitting up and is 6.5 months. She started working with him just after the 5 month mark. Thanks for the suggestions. What do you mean by hold thumb behind his head?

Re: Torticollis Moms

I don't know Michal....the TOT collar sounds drastic and I can't imagine that he's at that point...especially if he doesn't need the helmet. It's too extreme in my unprofessional opinion.

I think that you need a second opinion.

The exercises and therapy should be enough to get him through this. Lucas was/is a daycare child and so he got the minimal stertching because I wouldn't let daycare do it...it took longer but he got through it in a few months. Hopefully EI will be helpful but you might want to consider replacing the current PT if you are still using them. I don't think they stretch as well as Dr. Linda does and that makes a difference.

Re: Torticollis Moms

in my case DS would favor the left so when he was looking straight his head would tilt where his chin would go left and the top of his head went right. does that make sense? so if u touch behind your right ear, you'll feel your skull. theres a little pocket right under the bone. if you hold your thumb there, without pressure, it immediate holds the head midline. so with DS when i held behind his right ear under the skull it forced him to straighten his head. i hope you understand how im explaining this. i tried to do this as much as possible. whenever i saw him tilt i was right there with the thumb. lol and it doesnt hurt them.

and side note, i started turning the highchair so he would be forced to turn his head to the right to eat. and all his toys are on his right.

ETA when hes on the ball im always hovering him so he cant fall off. i just keep him in position, but let him use his own weight for support. at 6.5 months you should be able to do that with him now.

Message edited 8/11/2010 10:00:20 PM.

Re: Torticollis Moms

Ang,

We don't have a PT yet - still waiting for it through EI so I've just been trying to keep up on my own. The rec. didn't come from a PT but the craniofacial specialist. Looks like we're FINALLY getting a placement for PT and I hear (and hope) that they are great. So, I am really hoping. I miss Linda I am going to discuss with new PT before I just do anything.

Did you notice that Lucas got worse when he was hitting those milestones - sitting, crawling, etc? Linda did say it would happen and it certainly is with Jordan!!

Re: Torticollis Moms

Diana,

So that's right torticollis, correct? (I get so confused sometimes - lol) Jordan has left tort and I do try to hold him in my left arm so he looks over his left shoulder, position him left, etc.

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One of my daughters had Torticollis. We went to Physical Therapy once a week & I would do the exercises every time I changed her diaper. I was always worried about it, but it really corrected itself on its own. Probably around 6 months. Once in a while I would see it when she was tired. Def gone by a year. Never had the collar but always made her look the other way on her own.

The collar sounds helpful. I would try it at least part of the day. If it helps it def worth a try.
Good Luck with your decision

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Sweetie-call Dr. M's office tomorrow and see if they have a rec for a second opinion. I think from what you are saying and what everyone who knows is describing, it is very drastic and I think it might pay just to get another opinion.

But yay about the flat head! I think I told you when I saw him last-his head looks good!

See you both Tuesday!

Re: Torticollis Moms

Bump for morning crew. Anyone ever have this?

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i dont know anything about the TOT collar, only the helmets but I wanted to offer anyway!!!