Re: update about 20-month-old daughter

[Guest guest]

You probably will have a hard time convincing someone to band your daughter. I

looked at the pictures and I don't see plagio, but I see what I would call

brachy, but it isn't severe at all.

You should definately investigate your options, but with an 89 percent brachy

and 20 months old, you will probably be told not to do it. You may only get a 1

percentage improvement anyway from a band by the time you are able to get it.

But, if you feel that one percentage is worth it, then go for it. I get the idea

that a parent needs to feel that they have done everything that they can and at

the same time, regret that they didn't do something earlier.

Given the possible ASD issues that you are dealing with, you might want to

investigate cranial sacral therapy. That treatment has the potential to help

both the head shape and the other issues that you are talking about. A good CST

therapist will be able to treat despite any resistence to head touching. We were

able to get a physical therapist who was certified in the technique and our

insurance covered the treatments.

We did CST and chiro starting at 24 months and I believe that my daughter got

some improvements in her head shape due to the treatments. I could see

improvements in pictures that we took. We now only do maintenance chiro and she

was dismissed from the CST at 2.5 years.

At this point, her hair has grown so that her head shape is not so noticeable.

She still has what I would consider a mild brachy, but I have accepted it. I am

no longer seeking treatments for additional improvements.

, mom to , almost 3 years

STARband grad May 2009

Chiro and CST

land

>

> Hello! I'm not new to the group, but it's been quite a while since I

> last posted . . .

>

> I am " returning, " having ignored advice that some of you offered -

> and which I now deeply regret not having followed, hoping to get some

> more advice and encouragement. Please bear with the long post.

>

> My daugther Zia (20 months today) had/has what I believe would be

> described as relatively mild plagio and mild-moderate brachy. I don't

> know her " numbers " currently, though if I am remembering correctly

> from our last STARband scan (11/2009), she had 1-3mm assymetry and

> the other number was an 89. I am guessing just from my eyeball sense

> that the numbers are still about the same, with perhaps some slight

> improvement.

>

> Her borderline case has made the whole experience (for me) very

> difficult. NO ONE ELSE - husband, grandmothers, friends, peds and

> staff, STARband orthotist at CIRS in Oakland, even my therapist -

> seems to see what I see. I felt making the decision last December to

> proceed with getting a band was going against too much opposition.

> And I had reservations/hopes myself, since there had been noticeable

> improvement without a band. And we live about 3 hours away from the

> closest place to get a helmet (we're in Chico and would travel to

> CIRS in Oakland). And I recall from this listserv reading about other

> parents who shared about how they saw continued improvement after

> graduating from the band - which I thought might apply to us, even

> though we never did a band. And my daughter has some sensory issues,

> so I wasn't sure that she would tolerate a helmet as well as others.

>

> Fast forward to the present: I don't ever look at my daughter's head

> without assessing its shape. And most of the time, I look and am

> pleased/satisfied. However, when she is sweaty and has bad bed head

> or when her head is totally wet (pool and bath), I always get a

> sinking feeling in my stomach because it looks to my eye like her

> head is a bit " smushed " and is " just not all there. "

>

> About two weeks ago, I had a dreadful thought that is finally getting

> me back in action: I imagined that on her wedding day (whenever that

> may be ;-)), I would be looking at her head shape and feeling regret,

> rather than experiencing all the other emotions that one should feel

> in that situation. And it made me ill. So I finally communicated with

> my husband that I wanted to move forward with a helmet if at all

> possible. He still doesn't support the decision, but he is willing to

> go along with it for the sake of my anguish and our marriage.

>

> The complications: Since she is over 18 months, I need a doctor's

> note indicating the necessity. Since my ped believes that the issue

> is " resolved, " I see this as a potential road block, which I have not

> yet attempted to address. I have a plan, though, and am hopeful that

> I will have some resolution by early next week. Additionally, I still

> have reservations about her tolerating a helmet - and presumably now

> more than it would have been had we done this earlier.

>

> So . . . any experience with banding older babies, sensory issues,

> dealing with regret, dealing with everyone else who thinks that what

> you are doing isn't necessary, etc. would all be greatly appreciated.

>

> One last thing: In addition to the plagio issues, my daughter also

> has some developmental delays. They appear mild (i.e. even those

> people who know her well are surprised when I tell them), but there

> is sufficient concern, confirmed by assessments, such that we are

> working with an " intervention specialist " 4 days a week for 1-2 hours

> each day (through a State- and Federally-funded program). No one I've

> spoken to seems to believe that there is a connection between plagio

> and developmental delays; however, I am finding that surprising. In

> our case, where torticollis wasn't present, I believe that her not

> turning her head while sleeping and her unwillingness to do " tummy

> time, " may have been early indicators of her developmental delays. I

> certainly don't expect there to be a correlation for all cases, but

> perhaps some of you have some similar experiences or hunches.

>

> My daughter doesn't have a diagnosis yet (and the assessment isn't

> generally done until at least 2 years), but the intervention she is

> receiving is the same as she would be receiving if she were diagnosed

> with ASD (autism spectrum disorder). She may never get that

> diagnosis, in part because of the early interventions that we are

> providing, but I thought it was worth mentioning so you will have a

> sense of the types of developmental delays that I am referring to.

>

> Thank you in advance to any of you who are able to respond!

>

> Amy

> daughter Zia, 20 months

> Chico, CA

>

> p.s. I'm in the process of uploading a bunch of pictures of my

> daughter taken over the last couple of months. I believe they will

> end up in the V-Z folder, though am not certain I am doing this right.

>