Re: Jaxson's update and a question...

[Guest guest]

Hi Kim,

I'm glad to hear Jax is doing well. Please let us know how his MRI

goes. That letter would have really upset me too, I certainly don't

blame you! As for regretting your decision w/the DOCband, I have to

say it really isn't too late! Please look in the photo/before and

after section where I recently posted Hannah's pictures from her

third DOCband. She wore it from 15-19 mos after regressing between

11-15 mos, post DOCbands #1 and 2. She wore that third one from 15-

19 mos and saw some huge progress! You can even see in the pictures

I posted how much rounder and less angular her head looks, as well

as how much improvement she got in her ear symmetry. Nobody can

tell you for sure if he'll see any rounding on his own (heck, Hannah

REGRESSED after a year old!), and after age 2 the headshape does not

change! If you're unhappy with it now, there is still time. The

good thing is that you'd only have to go every 2-3 weeks at his age

for adjustments.

, mom to Hannah (21mos), DOCgrad 7/29

Cape Cod, Ma

> Hello to you all,

> It has been quite some time since I have posted, hope all of you

are

> well!

> Jax is coming along.. he is walking pretty well, his left foot is

> still rotated out though, but I did give up on the SMO's - they

didnt

> seem to work and they slowed him down. I have to bring him back to

> the doc for another checkup and the possibility of surgery or the

> braces with the bar inbetween the legs.

> His brachial plexus is coming along great - hardly notice it at

all.

> He does prefer using his left hand/arm, but thats ok... at least

he

> can use his right one.

> We go for his next MRI on Oct 11th... we will know about his

brain

> cyst then. We also received a letter .. yes, A LETTER, stating he

has

> mild cerebal palsy. No doctor called, nobody called to let me know

> this.. it appeared on a letter. I called, flipped out because they

> didnt tell me this in person, and they advised me they would

recheck

> him with the mri to see if there was an error. I swore .. quite a

> bit.. and am swearing in my head now thinking about it. Jerks.

> Now, on to his plagio... he graduated, as some of you know, on

April

> 9th. They graduated him as he had outgrown the CranioCap. I had

> fought with myself on the options of traveling 5 hours to be

banded

> by DocBand, and ended up choosing NOT to do it. I thought I had

came

> to peace with myself on that decision, but now, I regret it. He is

> now going on 15 months, so I know the hopes of improvement are

gone.

> But, I didn't realize that the head could still go flat... Jax's

has.

> His shape has changed, and not improved, it has become more flat.

> And, though I know I see it easier than anyone else in and around

> me, others have now noticed it, too. Do you think it will improve

> still? I should never have listend to that dang CranialFacial doc

> that they say is so good. He told me it would round out now! ARGH.

>

> Those with older kiddos will know... please fill me in ....

>

> ~Kim~

[Guest guest]

Hi Kim,

Thanks for the update on Jax. That letter was so uncalled for. I

thought they only sent letters when it was good news. I understand

your anger.

I agree with . It's not too late. If you are really unhappy

with his headshape then make the trek to CT. Maybe you can get Angel

FLight?!

Please keep us posted on your DOC band thoughts and Jax's tests.

mom to na

DOC Grad

SC

> > Hello to you all,

> > It has been quite some time since I have posted, hope all of you

> are

> > well!

> > Jax is coming along.. he is walking pretty well, his left foot

is

> > still rotated out though, but I did give up on the SMO's - they

> didnt

> > seem to work and they slowed him down. I have to bring him back

to

> > the doc for another checkup and the possibility of surgery or the

> > braces with the bar inbetween the legs.

> > His brachial plexus is coming along great - hardly notice it at

> all.

> > He does prefer using his left hand/arm, but thats ok... at least

> he

> > can use his right one.

> > We go for his next MRI on Oct 11th... we will know about his

> brain

> > cyst then. We also received a letter .. yes, A LETTER, stating he

> has

> > mild cerebal palsy. No doctor called, nobody called to let me

know

> > this.. it appeared on a letter. I called, flipped out because

they

> > didnt tell me this in person, and they advised me they would

> recheck

> > him with the mri to see if there was an error. I swore .. quite a

> > bit.. and am swearing in my head now thinking about it. Jerks.

> > Now, on to his plagio... he graduated, as some of you know, on

> April

> > 9th. They graduated him as he had outgrown the CranioCap. I had

> > fought with myself on the options of traveling 5 hours to be

> banded

> > by DocBand, and ended up choosing NOT to do it. I thought I had

> came

> > to peace with myself on that decision, but now, I regret it. He

is

> > now going on 15 months, so I know the hopes of improvement are

> gone.

> > But, I didn't realize that the head could still go flat... Jax's

> has.

> > His shape has changed, and not improved, it has become more

flat.

> > And, though I know I see it easier than anyone else in and

around

> > me, others have now noticed it, too. Do you think it will improve

> > still? I should never have listend to that dang CranialFacial doc

> > that they say is so good. He told me it would round out now!

ARGH.

> >

> > Those with older kiddos will know... please fill me in ....

> >

> > ~Kim~

[Guest guest]

Hi Kim,

Thanks for posting an update. Boy, you guys have been going through

a lot. I'm so sorry. So, are you saying that Jax's plagio is worse

now then before his CranioCap? As for natural correction, my son

wore two DOCs and still had significant flatness. He is now 2.5 and

I really believe that he has rounded some in the past month. It

could be wishful thinking but I really think it is better. Keep us

posted.

Natasha

> Hello to you all,

> It has been quite some time since I have posted, hope all of you

are

> well!

> Jax is coming along.. he is walking pretty well, his left foot is

> still rotated out though, but I did give up on the SMO's - they

didnt

> seem to work and they slowed him down. I have to bring him back to

> the doc for another checkup and the possibility of surgery or the

> braces with the bar inbetween the legs.

> His brachial plexus is coming along great - hardly notice it at

all.

> He does prefer using his left hand/arm, but thats ok... at least

he

> can use his right one.

> We go for his next MRI on Oct 11th... we will know about his

brain

> cyst then. We also received a letter .. yes, A LETTER, stating he

has

> mild cerebal palsy. No doctor called, nobody called to let me know

> this.. it appeared on a letter. I called, flipped out because they

> didnt tell me this in person, and they advised me they would

recheck

> him with the mri to see if there was an error. I swore .. quite a

> bit.. and am swearing in my head now thinking about it. Jerks.

> Now, on to his plagio... he graduated, as some of you know, on

April

> 9th. They graduated him as he had outgrown the CranioCap. I had

> fought with myself on the options of traveling 5 hours to be

banded

> by DocBand, and ended up choosing NOT to do it. I thought I had

came

> to peace with myself on that decision, but now, I regret it. He is

> now going on 15 months, so I know the hopes of improvement are

gone.

> But, I didn't realize that the head could still go flat... Jax's

has.

> His shape has changed, and not improved, it has become more flat.

> And, though I know I see it easier than anyone else in and around

> me, others have now noticed it, too. Do you think it will improve

> still? I should never have listend to that dang CranialFacial doc

> that they say is so good. He told me it would round out now! ARGH.

>

> Those with older kiddos will know... please fill me in ....

>

> ~Kim~

[Guest guest]

Silly mommy! Doc Bands are for older babies, too! At 15 mos he still

has a good chance for correction. My son started at 17 1/2 months and

looks soooo much better. He just looks amazing compared to how he

did. He still has asymmetry and I just shudder to think how he would

have looked had he not gotten the band.

Go to the Photos section and look in Before and After. The first pic

is called " 19.5 months " and shows a boy who STARTED treatment at 19.5

months of age. Also go to the CT website, www.cranialtech.com, and go

to the Parents Area. Click on Resources and look under the research

articles. There is an article on treatment of older infants,

entitled, strangely, " Treatment of the Older Infant. " The same

article is also in the Files section of this site, too.

At 15 mos I haven't seen any research or other evidence that

indicates it will round out even more. If it is bugging you now,

think how you might feel when he is five and things really get

noticeable. If I were you I would check your schedule and see if the

trips to CT would be feasible. I got my son a band and the only thing

I will ever regret is that I didn't do it sooner. If he'd gotten in

at 15 months I would have been so happy!

Good luck! Let us know what you decide.

, 22 mos, DOC Grad 9/7

> Hello to you all,

> It has been quite some time since I have posted, hope all of you

are

> well!

> Jax is coming along.. he is walking pretty well, his left foot is

> still rotated out though, but I did give up on the SMO's - they

didnt

> seem to work and they slowed him down. I have to bring him back to

> the doc for another checkup and the possibility of surgery or the

> braces with the bar inbetween the legs.

> His brachial plexus is coming along great - hardly notice it at

all.

> He does prefer using his left hand/arm, but thats ok... at least he

> can use his right one.

> We go for his next MRI on Oct 11th... we will know about his brain

> cyst then. We also received a letter .. yes, A LETTER, stating he

has

> mild cerebal palsy. No doctor called, nobody called to let me know

> this.. it appeared on a letter. I called, flipped out because they

> didnt tell me this in person, and they advised me they would

recheck

> him with the mri to see if there was an error. I swore .. quite a

> bit.. and am swearing in my head now thinking about it. Jerks.

> Now, on to his plagio... he graduated, as some of you know, on

April

> 9th. They graduated him as he had outgrown the CranioCap. I had

> fought with myself on the options of traveling 5 hours to be banded

> by DocBand, and ended up choosing NOT to do it. I thought I had

came

> to peace with myself on that decision, but now, I regret it. He is

> now going on 15 months, so I know the hopes of improvement are

gone.

> But, I didn't realize that the head could still go flat... Jax's

has.

> His shape has changed, and not improved, it has become more flat.

> And, though I know I see it easier than anyone else in and around

> me, others have now noticed it, too. Do you think it will improve

> still? I should never have listend to that dang CranialFacial doc

> that they say is so good. He told me it would round out now! ARGH.

>

> Those with older kiddos will know... please fill me in ....

>

> ~Kim~

[Guest guest]

Kim,

I am so sorry to hear all that is going on! I cannot belive they just

mailed you a letter! What age did he graduate from CranioCap? Was it

Dr. Wood that said he was done? Our OT said Milan could be done in 3

weeks and I am so worried about regression also. Please keep us

posted on how he is doing!

Twin Cities, MN

Milan's mom 6mos CranioCap 8/12

> Hello to you all,

> It has been quite some time since I have posted, hope all of you

are

> well!

> Jax is coming along.. he is walking pretty well, his left foot is

> still rotated out though, but I did give up on the SMO's - they

didnt

> seem to work and they slowed him down. I have to bring him back to

> the doc for another checkup and the possibility of surgery or the

> braces with the bar inbetween the legs.

> His brachial plexus is coming along great - hardly notice it at

all.

> He does prefer using his left hand/arm, but thats ok... at least he

> can use his right one.

> We go for his next MRI on Oct 11th... we will know about his brain

> cyst then. We also received a letter .. yes, A LETTER, stating he

has

> mild cerebal palsy. No doctor called, nobody called to let me know

> this.. it appeared on a letter. I called, flipped out because they

> didnt tell me this in person, and they advised me they would

recheck

> him with the mri to see if there was an error. I swore .. quite a

> bit.. and am swearing in my head now thinking about it. Jerks.

> Now, on to his plagio... he graduated, as some of you know, on

April

> 9th. They graduated him as he had outgrown the CranioCap. I had

> fought with myself on the options of traveling 5 hours to be banded

> by DocBand, and ended up choosing NOT to do it. I thought I had

came

> to peace with myself on that decision, but now, I regret it. He is

> now going on 15 months, so I know the hopes of improvement are

gone.

> But, I didn't realize that the head could still go flat... Jax's

has.

> His shape has changed, and not improved, it has become more flat.

> And, though I know I see it easier than anyone else in and around

> me, others have now noticed it, too. Do you think it will improve

> still? I should never have listend to that dang CranialFacial doc

> that they say is so good. He told me it would round out now! ARGH.

>

> Those with older kiddos will know... please fill me in ....

>

> ~Kim~