Re: greetings from new member [2 Attachments

[Guest guest]

HI! Your description of the bum crack caught my eye. Have you had any xrays or ct's or MRI to rule out any spinal abnormalities?

I'm not an expert in this field... but I have done alot of research because my dd has spinal abnormalities. My dd was tight on her tort side, sat crooked on the potty, had asym, leg folds, etc. I thought she had hip dysplasia but she had spinal cord anomalies.

You might want to make sure that there is nothing else going on before continuing with the CST. We are un aware what ill effect (if any) happened to furthur my dd's condition because of the PT we did before we knew about her condition.

HTH!

Jen

Mom to Luli - 3 yrs old

Torticollis, Plagio, Syringomyelia

greetings from new member [2 Attachments]

[Attachment(s) from Amy included below]

Hello plagio support group!

My name is Amy and our 7.5-month-old daughter, Zia, is scheduled to

be fitted for a helmet/band on Monday. So we are still in the

relatively early stages of this process . . .

I have a handful of questions to ask the group, but let me first

share a brief version of our story: Our pediatrician alerted us about

some mild asymmetry of her head during her first visit, and advised

us to do some neck stretches and to switch which side she slept on

relative to me. We also tried using a sleep positioner (wedge)

starting at 3.5 months, and a Bumbo for sitting at 4 months, and have

tried to carry her, and keep her off her back, as often as possible.

Regardless of what we did, she almost always ended up on her back

looking straight up, and her head did eventually flatten to a

noticeable (and alarming to me) degree. We are presently working with

a craniosacral physical therapist twice a week.

Despite our efforts, she does indeed have mild/moderate plagio (don't

know exactly how it will be classified since no one has done any

official measuring, which presumably will be done on Monday), our

pediatrician has given us the script for a helmet, and so we are

moving forward with the process.

So here are my questions:

- Does anyone have experience with the Hanger cranial band? As far as

we know, this is the only locally available option for us (we live in

Chico, CA, about 90 miles north of Sacramento).

- In addition to her flattened head, Zia's has a deviated gluteal

fold (i.e. her butt crack veers off to the right at the top). Has

anyone else had this issue? I'm not sure if it is related or

coincidental to the plagio, but the physical therapist is working on

this also since her sacrum/pelvis seems to be tilted and there is

tightness in her side bending.

- What type of specialist (doctor) do we want to be working with? We

are currently seeking an appointment with a neurosurgeon in

Sacramento. Is this the right direction to be going? It is apparently

the standard referral from our pediatrician so we are pursuing it, at

least for the moment.

- I am feeling a great deal of regret and guilt at not acting sooner

and feeling like I've failed in some important way as Zia's mom. Any

suggestions about dealing with this would be greatly appreciated.

I'm sure I am forgetting some other important questions, but I will

send them out in another email when I think of them. In the meantime,

I am so grateful to have connected with this community and look

forward to your responses.

Amy

Chico, CA

pictures of Zia attached (one front view, and one side view). I think

the side view shows the flattening, though I've mostly avoided taking

side-view pictures BECAUSE of her head shape, so I have a limited

selection from which to choose.