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In a message dated 8/9/2002 1:13:14 PM Eastern Daylight Time, momofivftwins@... writes:

You would definitely want

tort ruled out in Chase, but if he's already 9 mos., then maybe it's not an

issue.

Hi Tina & Gail,

Just wanted to chime in here and let you know that sometimes the tort is the last to get dx- unfortunately! I was in pt with another mom and her son was dx with plagio first, had the helmet- and then at 10 mos. they got the dx of tort. He did just fine with the pt- so even at a later age don't panic if he does have tort, it is still very treatable with exercises. I think sometimes tort can be tricky to spot, especially if a head tilt is not involved, some tort kids have a tilt, but also have great ROM, and some kids don't have the tilt, but have no ROM, or have both, so it can get pretty confusing if your child falls into those first two categories. For sure ask your ped to rule it out, and Gail's suggestion of using a toy to check if he can rotate towards it is also an excellent way for you to do your own checking in the meantime. I was told by my CT that something like over 50% of their patients have tort- and some have never been told that- so they are advising all parents to do stretches, because it will help those that need it, and it sure won't hurt those that don't. The preference to one side is not always the determining factor, some kids just do have a preference and its not tort. Like Gail mentioned, check on the ROM and any noticeable tilting of the head, these are probably the biggest indicators that I can think of too. You might also find it helpful to check into www.torticollis.org or www.torticolliskids to look at before and after pics, this might make it easier to identify if the posture looks familiar. Good luck!

' Mom

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Gail,

They said it would take up to a month before anything

gets going with a therapist, you know paperwork and

sending it to this person then that person, etc. But

you can bet I'll stay on top of it so things get done.

Now does this mean he'll have mental delays as well?

I don't know if developmental delays and mental delays

go hand in hand. I'll definitely look into it. What

is torticollis? I don't believe he has it. It has

never been mentioned. Thanks so much for the support

Gail.

With gratitude,

Tina & Chase

Arizona

--- Gail <momofivftwins@...> wrote:

> Tina,

> If he qualifies for ECI, then enroll him immediately

> and try not to worry.

> You are taking action and Chase is getting the help

> he needs. He'll be

> caught up in no time at all. As for whether or not

> it's related to the

> plagio, that question is still up for debate. I

> can't remember, did you say

> that Chase has torticollis? If so, then that could

> explain some of his

> delays. I would follow up withe the neuro - maybe

> he can at least put your

> mind at ease. You are doing a good job educating

> yourself and taking

> proactive measures for the sake of Chase. He is in

> good hands and

> everything will work out in the end.

>

> Gail, Sam and Sara's mom, DOC grads

>

> P.S. I just finished printing out all my material

> for my external review,

> and we pretty much bashed Cigna in our letter. I'm

> mailing it on our way

> out of town this afternoon. It should help make for

> a relaxing vacation.

>

>

> Re: New Member - Tina

>

>

> > Gail,

> >

> > OMG! My son Chase is also going through an Early

> > Intervention Program. He just had his in depth

> > evaluation yesterday and he qualifies in all

> areas.

> > My husband and I are just beside ourselves with

> worry.

> > She also suggested that he be seen by a

> neurologist,

> > which makes us even more worried. I asked my sons

> dr.

> > if the plagiocephaly had anything to do with

> > development and she told me no. Maybe a

> neurologist

> > will be a better person to direct this question to

> and

> > maybe they can help with the insurance fight.

> >

> > Thanks,

> > Tina

> >

>

>

>

__________________________________________________

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Tina,

I guess I'm lucky with how fast ECI got put into motion for us. Just 3

weeks ago we got the referral, a week later they came and did all the

paperwork, and a week after that was the full assesment. They were able to

give me some exercises to do with Sara and we are already seeing results. I

wouldn't think that mental and developmental delays are much related, but

then I'm no expert. I wouldn't jump to any conclusions about anything until

you have seen your neuro. Torticollis is tightening or shortening of the

neck muscles, usually on just one side, that cause the child to tilt their

head to the side or hold it in a particular position. This is how may kids,

mine included, developed plagio. They are only comfortable with turning

their head to one side, and they develop a flat spot on that side. My twins

tort began in utero due to how cramped they were. You would definitely want

tort ruled out in Chase, but if he's already 9 mos., then maybe it's not an

issue. Hold him on your lap facing away from you and see if he is able to

hold his head up straight or not. That's a tell tale sign. Hang in there.

You're doing a good job.

Gail, Sam and Sara's mom, DOC grads

Re: New Member - Tina

> >

> >

> > > Gail,

> > >

> > > OMG! My son Chase is also going through an Early

> > > Intervention Program. He just had his in depth

> > > evaluation yesterday and he qualifies in all

> > areas.

> > > My husband and I are just beside ourselves with

> > worry.

> > > She also suggested that he be seen by a

> > neurologist,

> > > which makes us even more worried. I asked my sons

> > dr.

> > > if the plagiocephaly had anything to do with

> > > development and she told me no. Maybe a

> > neurologist

> > > will be a better person to direct this question to

> > and

> > > maybe they can help with the insurance fight.

> > >

> > > Thanks,

> > > Tina

> > >

> >

> >

> >

>

>

> __________________________________________________

>

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  • 4 years later...

Hi everyone. I'm Gail. I've had RA for 30 years. I was diagnosed at

the age of 16. I was a computer analyst since 1982. Even though I had

a " physically easy on my body " job, the stress in the last ten years

took its toil on me. I finally had to come out of work in August of

2005. I've been sick ever since. At that time, I was on Enbrel

injections twice a week and MTX, along with so much more meds due to

other health problems, (severe sleeping disorder, chronic pain, fibro.,

sjr. syndrone, and now pustular psorasis (spelling ??)). I think I

could have dealt with all of the RA problems, but the psorasis is

excruciating pain (keeps hands and feet raw) and no meds are helping. I

was already battling depression with the RA problems, but now I have no

will to even get out of the bed any more and that is crippling me fast.

I joined this group to hopefully meet people that know what I'm going

through. Unless someone has walked in our shoes, no one can begin to

understand the pain. I am 46 years old and wasn't prepared for

disability at such an early age. I feel extremely guilty because I

feel like a burden to my family. I know there are others out there

that experience these same problems and I'm reaching out for hope.

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