Re: Re: new to list - from raleigh, nc

[Guest guest]

In a message dated 3/21/2002 11:57:15 AM Eastern Standard Time, dj2kirby@... writes:

> 1. has anyone else had success with craniosacral therapy? the woman

we

> are seeing does not take insurance and needs to see emma every

week.

> of course, i will do anything i can, but it would be reassuring to

> hear of some success stories.

My pt used craniosacral therapy techniques at the start of our pt sessions to relax . From what I understand, this involves the energy and fluids in the body, and it seemed hokie at first, like holding pressure points and just meditating, but she showed us how holding a certain way, he would release his tight muscle on his own- you could see at first your hand would be very close to under his neck, and soon, he would be so far away from your hand, relaxing his neck and shoulders, that his head would drop away so relaxed and he actually had a neck! Another technique also helped to dissipate the lump, we think, as the one exercise she had us point a direction of energy with a finger, and I wouldn't have believed it if I hadn't seen it, but after 5 or 6 minutes, the lump was throbbing- she said this stimulates circulation in the lump and breaks up the mass (the technique would not end until the throbbing stopped- this took A LOT of time, so we didn't do this one as often). I feel overall cranialsacral helped relax him. Do a search online for more info under craniosacral.

> 2. are there other people on this list from raleigh, nc? anyone who

> works for the state (as i do) who has had experience with the state

> health plan and whether or not it will cover the doc band? does the

> doc band treatment need a referral from her pediatrician, or can

that

> come from the neurosurgeon?

I got my referral from my ped.

> 3. shouldn't someone have warned me about plagio when emma was

> diagnosed with torticollis?? her pediatrician or PT? i had really

> never heard of it, and now that i'm doing some research, it seems

that

> torticollis often leads to plagio. i can't help but feel angry that

i

> did nothing to prevent this from happening.

Although I was slightly aware of the positonal problem (constantly favoring one side and we would change his position)- my ped never addressed or used the word plagio at his 2 month dx of tort. Not at the 4 month either. But luckily by then, I had found this group and the tort group and made myself more educated on this than my ped was. CT even confirmed and pointed out that a 2 day old pic revealed plagio also started inutero. My ped would say, 'nobody's perfect" , "she's seen worse", "ear misalignment was an optical illusion"- so, no, she never warned us about plagio and the nuero was baffled by the DOC band, saying he had never seen one in person. I pushed for the referral against her advice and am so glad we did!! Even last week, had severe tonsilitis, and she says at the visit, "on a side note, his head looks fantastic!" I'm trying to bite my tongue and not be too b** & #@# about her lack of direction on the plagio, because I am so grateful she got us into pt by 3 months.

> 4. has anyone used an osteopath to treat plagio?

Although my pt was not a professional osteopath, she did use the craniosacral technique and I believe it helped, not fixed, but helped, in conjunction with aggresive stretching therapy and the DOC band.

This was our experience. Hope this helps!!

' Mom

[Guest guest]

Amy, Your little Emma sounds just like our little Jessie. Jessie is

completely flat on the right side and her right ear is a lot more forward

than her left ear. Her forhead and cheek are more protrusive on the right

side. I diagnosed her plagio @ 10.5 mos. after being told at the 6 mo. and

9mo. mo. checkups that everything was fine and it would round out on its own.

Plagio was never mentioned :0( After I realized what Jessie had, I told my

ped I wanted a referral. The neurosurgeon we were referred to sent us to a

physical therapist for evaluation and treatment. The RX for Jessie to be

evaluated and treated with the DOC band came from my ped. although we were

told later that in order for insurance to cover the DOC band, the diagnosis

has to come from a neurologist, a neurosurgeon or a plastic surgeon. Jessie

was evaluated by the physical therapist as being severe (21 mm.

assymetrical). We were also told Jessie had torticollis but had pretty much

worked it out on her own by now. Now that I have educated myself about tort,

I know looking back at pictures and remembering her poor range of motion and

how it was always more comfortable for her to look right, that she definitely

had it from early on. You had stated that you felt angry because you could

have prevented the plagio if someone had warned you about it when Emma was

diagnosed with tort. I know how you feel. It is so sad that something so

preventable was not brought to your attention. I was angry too that I had

done nothing to prevent Jessie's plagio either, but how can one do something

when they have no info from the very doctor's they trust to provide that

info? Our Jessie was never even diagnosed with tort. It makes me sick to

think how preventable all of this was. I feel like I paid my ped for faulty

physical exams. But the good news is that we're doing something now and

that's what's important. Jessie has been in her DOC band since 11 mos. and

she just celebrated her 1st b-day on March 16th. She is getting CranioSacral

therapy from the PT as well. I hope this info is helpful. I will keep you and

Emma in my prayers. Theresa, Jessie's mom

[Guest guest]

Hi Theresa,

Just wanted say how lucky your Jessie is to have such a driven mommy!!! Way

to go the distance- it is so frustrating to hear over and over (including my

own story) about how Docs take this so lightly early on and parents have to

push to get something done!! That is fantastic that you are receiving pt now

and craniosacral- we found both to really work well for us. Its such a

stressful time, and you are probably eating, drinking, sleeping tort- but the

good news is that you will find yourself finished soon and I'm sure you

already feel the weight of plagio lifted off your shoulders with the DOC band

working its magic. Good luck to you and I wish you all the best!

' Mom (Tort resolved, DOC grad)