Re: A Scan for

[Guest guest]

Sorry, you could not get a good measurement.  That must have felt

extremely disappointing.  My older son got a shorter haircut.  I was

surprised how long and thin his head looks with the short hair.   I've

been wondering whether longer hair could increase the brachy

measurement.

(Unfortunately, after the haircut I see the plagio. :|(  I'm pretty

sure it is in the very mild range of 3-6mm with a brachy measurement in

the low 80's.)

-Kathy, mom to almost 2 and 5.5 both now with very mild

plagio

wrote:

 

Okay - I finally did it. I took back to Star Cranial in

Columbia (MD) for a follow up scan 1 year and 9 days after her

graduation.

 

did great. I prepared her beforehand by showing her a

video of the scan process that I found online and we talked about it

and practiced it on her baby.  (ortho) also explained to her what

we were doing and demonstrated it on a baby doll that they have in the

office.  cooperated 100 percent. She held so still and I was so

proud. And, it was so amazing since she screamed her head off during

every single scan during her treatment.

 

's hair is now down past her shoulders. It isn't super

thick, but it is considerably thicker than it was last year and

did comment on how thick it was when she put the head sock on her. So,

we put the sock on and had to tuck in her hair. Where it is tucked in

above her ears is right around where that width measurement is taken

(level 3 is just above the ears on the sides). The back was different.-

it was tucked in near the base of the skull where the bottom of the

sock is.

 

I mention the hair because it is the reason that we chose to

disregard the scan after looking at it. What everyone is saying about

hair is true (in a separate thread). said the same thing. 

`s hair prevented us from getting good numbers. Luckily,

is good enough to notice that the numbers just did not make sense.

According to the numbers, 's head had regressed. But, said

that none of the "clinical" signs of regression were present. Plus,

's head just doesn't look like a 94 percent. So, she said that

she didn't think that it was a good scan and probably because of her

hair. Because her head is still so small (she still fits into 12 to 18

month hats at nearly 3 years), those few mm extra on both sides of her

head (with the hair tucked in there) made a major difference. So, I do

not have my proof of improvement and never will. I do not plan on

cutting or shaving her hair just to get a scan. But, at least now I

know that going for a scan is no longer an option.

 

And, I am so grateful that knows her stuff. This just

illustrates the importance of having a good ortho and it also

illustrates to me why so many people had recommended to me.

was able to look at more than the numbers - she looked at the 3D views

as well as 's head and just knew that the numbers didn't make

sense. If I had someone less competent, I would have left there

worrying that had regressed.

 

Despite my lack of proof, I do believe that `s head has

improved. I believe it every time that I see the pictures that I've

taken. And, she looks good to me. And, I am so grateful for the

feedback that I have gotten from so many of you who say the same exact

thing.

 

I've been talking about doing this for months. If I had done it 6

months ago, we might have been able to get numbers, but 6 months ago, I

wasn't ready. I needed to be at a place where I knew that I didn't need

the numbers to let me know how to feel about her head. Before calling

for the appointment, I knew that I would be okay with the results even

if they didn't show improvement. That is because I now believe that the

numbers don't tell the whole story. For one thing, they only tell what

is going on in one slice of her head. Improvements elsewhere will not

show up. For another thing, as I have seen with multiple pictures

posted on here, the same number looks so differently on each head. A 92

percent on my daughter looks different than a 92 percent on other

heads. So, while the insurance companies use these numbers as guides, I

really have decided that we, as parents, need to try and focus on the

whole head and use our own judgment as to what looks okay. No, her head

isn't perfect and I have spent way too many months feeling guilty for

not getting her treated while she was young, but I can't go back and

change that now. What we have ended up with isn't "normal," but is it

good enough.

 

So why did I go for the scan? Partly because I knew that time was

running out and if I didn't do it now, then she would be too big. And,

because I did want to get proof of the improvement that I saw. I wasn't

sure that I could get it, but I wanted to try. I thought I might not

get it because she wouldn't cooperate - I had not even thought of the

hair.

 

So, I am disappointed that we couldn't get a good scan, but I am

still okay with 's head. She is doing so well in so many ways

and she does pass for normal for most people. Her head will not get in

her way in her life and that was my main goal for her when I got her

treatment.

 

On a side note, has been playing "scanning heads" over and

over again since we got back. It really is quite cute. She also was so

happy to see the pictures of other babies in bands when we went to the

office. She asked to watch the online video again and then said, "now

the baby goes to Burger King." (BK was where we went after her scan).

 

, mom to , 2 3/4 years

STARband grad May 2009