For those of you who aren't aware of my son's problem, he has what they call torticollis. He has had this ever since he was born, but we were only made aware of this problem when Ethan was about 3 months old. If you who don't know what this is here's what Wikipedia has to say about it: " Birth trauma or intrauterine malposition is considered to cause damage to the
sternocleidomastoid muscle (the side muscle) in the neck. This results in a shortening or excessive contraction of the sternocleidomastoid muscle, often with limited range of motion in both rotation and lateral bending. The head is typically tilted in lateral bending toward the affected muscle and rotated toward the opposite side." Basically, it's a weak neck ( at least on one side). The doctors said that Ethan was so scrunched inside me that he never developed the muscles on the one side of his neck and that the birth process forced his head and neck to be straight which in turned ripped those weak muscles.. ouch!
We have been going to the physical therapists, doing strengthening exercises, and stretches with Ethan for months now trying to correct the problem and have had no such luck! So two weeks ago the doctors said that they were going to go to more "extreme" measures now and made this neck brace ( or T.O.T collar) to help him develop those weak side muscles. He is suppose to wear it whenever he is awake during the day. He does not particularly enjoy wearing this contraption but hopefully it will fix the problem. However, if it doesn't, the doctors say that surgery will be our next option.. yikes! Here are some pictures of our poor little guy with his collar on...
PS.. Ethan is 7 1/2 months now and is basically crawling (well, in between an army crawl and a normal crawl) everywhere! He definitely get where he wants to go! He is also waving bye-bye! I'll post some videos tomm. hopefully.
Doesn't he just look so sad and pitiful!?
Doesn't he just look so sad and pitiful!?
21 comments:
HE LOOKS TO BE SAYING... "PICTURES MOM? ARE YOU KIDDING ME?"
I hope the TOT collar does the trick and you don't have to do surgery. Is he really 7 1/2 months old? I can't believe it! He is adorable.
aww poor little guy! i had no idea! hopefully it works!
thanks! i try and update often for my mom and dad in TX b/c they both learned the internet to keep up with us here in utah so i try my hardest to update daily.
and the girls look quite different from each other... i posted a pic on our blog awhile back of the girls around the same age and in the same outfit to see the difference.
i know life is busy for y'all and us but we should try and get together! maybe while the williamsons are in town or something.
Poor guy! Still looks so cute though!
Poor guy, I hope he gets better soon. And he is looking so cute. Also I haven't been on for awhile so this is late, but congrats on the job in Mexico. That will be very exciting!
When I read the title "tot collar" I was hoping that you had discovered that they finally approved corrective collars for babies (you know, like the ones dogs wear)... we sure could use for Lily... she gets into everything :)
I hope that it works for you guys. The poor kids looks like he's had enough suffering. He doesn't need surgery on top of it :)
Ashley your little guy is so cute. I hope you don't mind me looking at your Blog, I love reading through them while Michael Dunn takes his nap!
Ash!! I think my Ella might have had something similar to that...she was breech, so was in a weird position anyway, but her little head cocked for the longest time until she walked, and it kinda fixed itself. They said if was a muscle thing, and every once-in-a-while when she's tired it'll relax to the same position it used to be in. Anway, so sorry! Good luck! That pic was the first time I thought he looked like Justin! Y'all make beautiful babies...keep having them! I forgot that he was the same age as my Ella...c'mon, wouldn't you want him to marry someone who was named after your missionary? :-) It'll be great! love to keep up with you!
he is still so cute...
Hi there! I came across your blog via a google search on TOT collars. My 7 1/2 month old has been in PT for 3 moths now and his therapist is thinking we need a TOT collar for the times that he regresses. Can you possibly email me I'd love to ask some questions about how it has worked out for you guys. You can email me at fsusammy[at]gmail[dot]com
Thanks!
~Sam
Hi, my name is Barb. I just found your page searching Torticollis. My 4 month old was just diagnosed and I would love to talk to you and find out more and to see how progress is. If you wouldn't mind, I can be reached by phone at 443-553-5655 or email at... themillers3@live.com
Thank you!!!!!!!!!!!!!
Looks like we have a little girl with the same condition (she's 4 months). We've been doing some research on CMT, plagiocephaly, etc. and your blog popped up. Thank you for posting your story.
We have not yet done anything with the Drs, we were just exploring it today. I look forward to hearing how things are going for you and your beautiful family.
i know there have been some other parents wanting your feedback on the success of your sons t.o.t. collar - i would too! : ) my 4 month old son is going to be fitted for his in the next couple of weeks and i'm a bit anxious about the whole thing.
if you have time, i would love to hear how it has worked out for your son and if you have noticed any improvement. my son has a pretty severe case and hasn't been as responsive as we would like to his pt. i'm hoping desperately that he will not need surgery : (
please email me if you have the time! thanks!
lindsay l.portuguez@yahoo.com
I know that alot of people ask question...I do have a few please contact me: moni_sanchez1013@yahoo.com I have a 6mth old has the condition since 2 mths he has improved but I have a few questions...hope all is well on your end!!
My baby just got his TOT collar and I feel like it doesnt work! :( he still has a pretty significant tilt... hopefully his OT can adjust it at his next visit? This is the first week he's worn it. Anyone else have this problem?
Hi, we discovered our daughter Riley had torticollis when she was 1 month and have been doing PT to try and work it out. Her range of motion has improved, though she won't hold her head to that side yet! The PT girl said we might consider surgery, but after reading your blog, I'm hoping to try the TOT collar first. She's only 2 months now, I can't imagine putting her through surgery at such a young age! I hope your son doesn't have to go through surgery either!
Ashley-I'm a pediatric OT in CA. I typed TOT collar in Google & your blog came up. Good luck with your little guy! LOTS of stretches & positioning, as I'm sure your PT has told you. Thanks for leading me to the Cutest Blog on the Block! I too have a blog for our little lady.
Ashleigh,
hi...my daughter was diagnosed w/torticollis...she is now 10 mo. old and we've been doing therapy for the past 3 1/2 months. shes progressing but not as much as I and her PT would like. We were looking into getting her the T.O.T collar and ive decided to order it for her. i would like to know how well your son progressed w/his and if he did at all. It is worth a try to get the collar but her PT said it may not work. please write back to me as soon as u can, id greatly appreciate it. my email is palicutie83@yahoo.com.....thanx and i wish u the best of luck w/ur son!! hes adorable!!
Ashleigh,
hi...my daughter was diagnosed w/torticollis...she is now 10 mo. old and we've been doing therapy for the past 3 1/2 months. shes progressing but not as much as I and her PT would like. We were looking into getting her the T.O.T collar and ive decided to order it for her. i would like to know how well your son progressed w/his and if he did at all. It is worth a try to get the collar but her PT said it may not work. please write back to me as soon as u can, id greatly appreciate it. my email is palicutie83@yahoo.com.....thanx and i wish u the best of luck w/ur son!! hes adorable!!
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