Re: Michele and Riley- OT non plagio

[Guest guest]

Michele,

I found myself eating, drinking, sleeping tort, literally- it was constantly

on my mind!! Worry, worry, worry!! And of course we want to see results-

NOW- and with tort it really teaches you that patience stinks, I mean, is a

virture

It was the most stressful time in our lives, having to constantly worry, did

I stretch enough today, am I failing at this, are we getting somewhere, will

my child be ok? I found it very beneficial to also join the

torticolliskids@... support group because you can see the before and

after shots of kids that may or may not be as severe as your own- and you

think- wow, it can be done!! That's why I like to share our story, because I

was you not very long ago, and other moms and dads gave me hope, and with

time, you'll be able to say Riley is straight!!

started wearing his DOC band a week shy of his 5 month birthday and

was in it approx. 3 months with great results. It gave us such piece of mind

to concentrate on the tort while the band worked on the plagio. It was like,

ok, now we're not worried about 2 things, just one because the other is

working itself out with the band. You will find that as well.

The fact that Riley turns to the right sometimes (I'm guessing he had limited

ROM from the way you put that) is a HUGE milestone. I cried when

could finally lay on me belly to belly with his head turned left! Could not

do that since birth!! It will get easier, but just remind yourself when your

tired of stretching (everyday!!) that this is for a short period in your

son's life- maybe even a year to be generous- remind yourself that the window

of opportunity is much like plagio, the more you work hard at it now, the

better the results in the long run. Try to take turns with your hubby or

even grandparents can help. At 9 months, you can have Riley do a lot of

stretching without him even knowing it, and without you having to manipulate

him yourself (i.e., balloons up high, toys over to his right, reach for that

toy, etc.), supplemental to your stretching exercises with him.

Wishing you the best of luck- keep the faith, this will all be a distant

memory one day and Riley could not be in better hands- you are on top of this

and the fact that your sick of stretching shows what a concerned mom you are

and doing a great job at working towards resolve!! Please keep me posted- I

can't wait to hear how well Riley is doing Hang in there, the love for

our children gets us through the hard parts!

' Mom (tort resolved, DOC grad) 14 months

[Guest guest]

Hi ,

Thanks so much for the encouragement. I feel much less alone having heard from a few people that can relate to my frustration! Maybe we need to spend some more time strengthening the non tort side so its easier for him to keep his head midline. I feel like I spend every one of his waking hours on either stretching or other exercises!! But if it all pays off then its worth it!

Riley is almost 9 months--his birthday was June 27th (not 37th, obviously), but his head is in about the 100th percentile so I think it will harden a little later than others. He does sometimes turn to his right while sleeping, so that's definitely improvement. How long was your son in his DOC band? How old was he when he started and when he graduated? I keep telling myself that time spent stretching, and in the helmet will give great returns, but like my grandmother used to say "you worry about your children from the day they are born to the day you die!"

Thanks so much for your words of encouragement...I'll keep you posted!

Michele mom to Riley, helmet 3/8/02

rella1234@... wrote: Michele,Just wanted to let you know I can totally relate to your frustration with the tort!! was in pt for approx. 6 months professionally, and even then we were leary on saying "resolved" because some days he would be very midline, and others wayyyyy tilted!! I thought it would never end!! Keep in mind that if you are stretching everyday, you are doing your homework, it will just take time. Also, the tilt is the last to go. The muscle has to be stretched out yes, but at the same time, the opposite muscle is considered "weak"- and needs strenghtening in order to pick that head up to go back towards that unaffected side, to be midline. How long has Riley been stretched? If you say you have seen results, I would say awesome!! The children that see no results at all are usually the ones that end up in surgery. The fact that some days are good and some are bad sound so typical of tort kids that I have gotten to know online, including our own experience. Compliment stretches with working with other parts of the body as well. You can strengthen the non-tort side neck muscle by sitting them on your lap facing the tv (it helps to keep them interested in something)- and tilt them from side to side. You will notice that on the tort side, they can stay pretty midline when at an angle (the body naturally tries to keep the head in a midline position, so they will compensate to stay midline when tilted). When tilted towards the non-tilt side, they have a harder time picking up the head to stay "midline"- and it is great exercise to work that weak muscle (please email me if this doesn't make sense). Also make sure they are reaching for things with both hands, really make them stretch for a toy on both sides, this helps also. Looking up high at toys, way left or way right, or way low, all very key to helping use that muscle.We have not seen a regression in his flatness as a result of him occassionally reverting back to that side- although he mostly sleeps on his stomach now (butt waving in the air He still prefers to sleep facing right, although he will turn left as well, so I'm not as paranoid about shifting him that way all the time.I think Riley is 8 months (?) so I doubt you will see regression either once you are finished with the band/helmet. I can now say resolved, but only in the sense that the muscle is no longer tight and for the majority he is very straight. However, he does revert back to mild tilting when he's sick as you talked about. Don't worry too much, as long as you are making progress, keeping an eye on posture and being very conscious about propping his head as much as possible, diligent stretching, strengthening, you should continue to see results- although it will be very hard work for your next 6 weeks. I found massage very helpful also. Good luck to you and keep the faith, there are a lot of us tort moms out here that understand what your going through- there is a light at the end of the tunnel and one day you'll breath a big sigh of relief! Please keep us posted on Riley's progress! ' Mom (tort resolved, DOC grad)For more plagio info