Re: Re: Having difficulty deciding to band

[Guest guest]

Well said !!!!

Jen

Mommy to 4...and 1 more!!!!

"Luli"

www.babiesonline.com/babies/j/jens5th/

[Guest guest]

- Yes there can be some delays because of Tort. My dd had some delays and then over night advanced to none at all. Though, she does not crawl, she is mobile and moving around.

Anyway, to answer your questions - You can see a Neuro - but I would say that in order to determine if there is any delays then you should see an Occupational/Physical therapist. Are you seeing an PT/OT?

You can also contact the Early Start/Intervention program in your state. They provide FREE consultations and evaluations and if needed treatment for developmentally delayed babies.

HTH!

Jen

Mommy to 4...and 1 more!!!!

"Luli"

www.babiesonline.com/babies/j/jens5th/

[Guest guest]

I would agree that if you're unsure about whether or not to band it is best to take your child to see a craniofacial specialist for actual measurements. I was under the impression that my daughter's plagio was pretty mild until she had the head scan done for her band. Even the measurements of asymmetry aren't always a precise indicator-- my daughter had 9mm of asymmetry which is in the "moderate" range but both the tech and our PT classified her as moderate/severe because of her facial asymmetry and ear misalignment. The head itself can appear to be not so bad but the "experts" who see these things all the time can tell if there is jaw involvement or other things that might indicate a need for helmet treatment in order to prevent future problems. Same thing goes for torticollis... I hear a lot of parents on this board who say that their child's tort is "mild." I think we all want to look on the bright side and that's normal-- I was very much in denial about this for quite awhile. Don't be fooled-- kids with tort learn how to compensate so you may not always see their tightness/tilt as they get bigger. Our PT is always pointing out things to me that I'd never notice on my own and the same thing happened when we went to the craniofacial specialist. Just keep an open mind, do lots of research and get a second opinion if you feel it is necessary.

Alison

mom to Leila, born 9/25/05 (tort/plagio, STARband 6/5/06)

Boynton Beach, FL

Plagiocephaly From: oscaredwink@...Date: Wed, 2 Aug 2006 18:30:11 +0000Subject: Re: Having difficulty deciding to band

We have two children with plagio or brachy. Our first we were so upset about and just knew he would need a band when we took him to CT. They told us he was mild enough and young enough that if we got him off of his flat spot that he would probably be OK. They essentially did not recommend a band for him, without even taking any measurements. We were shocked and relieved. So when our third child started having issues we took him for measurements and were able to accept their assessment that he was severe and that he would really benefit from a band (which was also strongly recommended by the ped and the neurosurgeon). I guess this is a long way of saying that at least in our own experience bands are not universally recommended. I personally wanted to hear what CT had to say about both of our son's heads because all they do is look at baby heads all day long. I felt like it was possible that our ped was over (or under reacting in the case of son#1) since they see proportionally so many less cases of plagio or brachy. That was just our perspective--perhaps too trusting but we are not unhappy with any decisions we made so far. It is a very tough decision.Stacey>> My son is 7 months old and we have been aggressively repositioning and > have seen some results but he is still above the normal measurement > for plagio. I just have not found enough studies to show me that this > is necessary for his mild plagio. My husband is against it as well as > his family and I am having a hard time pushing them because I too am > not sure if it is necessary as nature and time has rounded it out, but > not completely and I know that our window is getting smaller to make a > decision. I feel like a lot of the info I get from the Doctors and > banding reps is subjective, and I have a real problem with the company > doing the diagnosis is the same company to treat. Seems like a sales > pitch. (Why can't the Peds do the measurements?) But then I think - > does it matter what I think or feel because > the bands DO round out their heads. HOW DO YOU MAKE A DECISION and > then the casting pics have really freaked me out, I fear at this point > I would just run out of there.> > I would love advice on how you get comfortable with the decision to > band or not to band. Are there people out there with the same > skepticism and/or difficulty making this decision for a little one who > just found their toes??> With MSN Spaces email straight to your blog. Upload jokes, photos and more. It's free! It's free!

[Guest guest]

Hello, I am realtively new to the website. Our son (8 mos old) has been wearing a STARband for exactly one week. The e-mails from the group have been very educational and have raised several questions. I was hoping some of the other parents might be able to lead me to resources that might answer/address the following: (1) Is torticollis/plagiocelphaly linked to delays in gross motor skill development (rolling over, crawling, walking) (2) Is torticollis/plagiocephaly linked to delays in fine motor skill development (child holding sippy cup or bottle withouth assistance, self feeding thumb nail size bits of food) (3) Are there any other associated problems in children with Tort/Palgiocephaly As our Ped prescribed a consultation for physical therapy/STARband, we never

met with a nuerosurgeon. Based on what I have read in the e-mails from the group it might be worthwhile to seek out the opinion of the nuerosurgeon regarding my sons motor skill development. He is development much more slowly than his brother did and I am concerned that it is because of tort. Any information or opinions would be greatly appreciated. Thanks! in ATL

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

If you are concerned about your child's development you can have your child evaluated through your state's Early Intervention program (Torticolliskids/files/Early%20Intervention/). In our case, they came out to our house and did an assessment and decided that everything was within normal ranges. Had they not been within normal ranges he would have qualified for free physical therapy through the state.MollyCaliforniaNicolas, 9.5 months, tort & plagio, STARband 4/25/06, 3.5, 6.5

-----Original Message-----From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of QuinnSent: 2 August 2006 11:51 AMPlagiocephaly Subject: Re: Re: Having difficulty deciding to band

Hello,

I am realtively new to the website. Our son (8 mos old) has been wearing a STARband for exactly one week. The e-mails from the group have been very educational and have raised several questions. I was hoping some of the other parents might be able to lead me to resources that might answer/address the following:

(1) Is torticollis/plagiocelphaly linked to delays in gross motor skill development (rolling over, crawling, walking)

(2) Is torticollis/plagiocephaly linked to delays in fine motor skill development (child holding sippy cup or bottle withouth assistance, self feeding thumb nail size bits of food)

(3) Are there any other associated problems in children with Tort/Palgiocephaly

As our Ped prescribed a consultation for physical therapy/STARband, we never met with a nuerosurgeon. Based on what I have read in the e-mails from the group it might be worthwhile to seek out the opinion of the nuerosurgeon regarding my sons motor skill development. He is development much more slowly than his brother did and I am concerned that it is because of tort.

Any information or opinions would be greatly appreciated.

Thanks!

in ATL

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Or, try this link:

http://www.nichcy.org/states.htm

-----Original Message-----From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of Foley, MollySent: 2 August 2006 12:35 PMPlagiocephaly Subject: RE: Re: Having difficulty deciding to band

If you are concerned about your child's development you can have your child evaluated through your state's Early Intervention program (Torticolliskids/files/Early%20Intervention/). In our case, they came out to our house and did an assessment and decided that everything was within normal ranges. Had they not been within normal ranges he would have qualified for free physical therapy through the state.MollyCaliforniaNicolas, 9.5 months, tort & plagio, STARband 4/25/06, 3.5, 6.5

-----Original Message-----From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of QuinnSent: 2 August 2006 11:51 AMPlagiocephaly Subject: Re: Re: Having difficulty deciding to band

Hello,

I am realtively new to the website. Our son (8 mos old) has been wearing a STARband for exactly one week. The e-mails from the group have been very educational and have raised several questions. I was hoping some of the other parents might be able to lead me to resources that might answer/address the following:

(1) Is torticollis/plagiocelphaly linked to delays in gross motor skill development (rolling over, crawling, walking)

(2) Is torticollis/plagiocephaly linked to delays in fine motor skill development (child holding sippy cup or bottle withouth assistance, self feeding thumb nail size bits of food)

(3) Are there any other associated problems in children with Tort/Palgiocephaly

As our Ped prescribed a consultation for physical therapy/STARband, we never met with a nuerosurgeon. Based on what I have read in the e-mails from the group it might be worthwhile to seek out the opinion of the nuerosurgeon regarding my sons motor skill development. He is development much more slowly than his brother did and I am concerned that it is because of tort.

Any information or opinions would be greatly appreciated.

Thanks!

in ATL

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

The same thing happend with us. I was told by so many doctors that her asymmetries were just cosmetic.. that everyone has them.. hers were barely noticeable (HA!) and that because I'm mom, I see it more. But truly, when she finally did get measured by an expert and seen by a good cranio facial surgeon who specializes in plagio.. Peyton's head and facial asymmetries ended up being more pronounced than even *I* thought! They saw things that I had noticed but in a different way (I saw her eye was smaller than the other... they said that was because one of her eye sockets was set back farther than the other). I thought we would be on the very edge of banding... turns out she more than qualified for the band because her facial asymmetries were quite extreme for the degree of her plagio. So getting measurements from a specialist can always help shed some light.

HTH!

Colleen

Peyton (tort and plagio) and Haidyn, 9 months

Jensen, 4 yrs

Re: Having difficulty deciding to band

We have two children with plagio or brachy. Our first we were so upset about and just knew he would need a band when we took him to CT. They told us he was mild enough and young enough that if we got him off of his flat spot that he would probably be OK. They essentially did not recommend a band for him, without even taking any measurements. We were shocked and relieved. So when our third child started having issues we took him for measurements and were able to accept their assessment that he was severe and that he would really benefit from a band (which was also strongly recommended by the ped and the neurosurgeon). I guess this is a long way of saying that at least in our own experience bands are not universally recommended. I personally wanted to hear what CT had to say about both of our son's heads because all they do is look at baby heads all day long. I felt like it was possible that our ped was over (or under reacting in the case of son#1) since they see proportionally so many less cases of plagio or brachy. That was just our perspective--perhaps too trusting but we are not unhappy with any decisions we made so far. It is a very tough decision.Stacey>> My son is 7 months old and we have been aggressively repositioning and > have seen some results but he is still above the normal measurement > for plagio. I just have not found enough studies to show me that this > is necessary for his mild plagio. My husband is against it as well as > his family and I am having a hard time pushing them because I too am > not sure if it is necessary as nature and time has rounded it out, but > not completely and I know that our window is getting smaller to make a > decision. I feel like a lot of the info I get from the Doctors and > banding reps is subjective, and I have a real problem with the company > doing the diagnosis is the same company to treat. Seems like a sales > pitch. (Why can't the Peds do the measurements?) But then I think - > does it matter what I think or feel because > the bands DO round out their heads. HOW DO YOU MAKE A DECISION and > then the casting pics have really freaked me out, I fear at this point > I would just run out of there.> > I would love advice on how you get comfortable with the decision to > band or not to band. Are there people out there with the same > skepticism and/or difficulty making this decision for a little one who > just found their toes??>

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[Guest guest]

I know it is a tough decision. If it helps any,

though, we discovered our sons flattening at about 3

months. Everyone dr. we spoke to said it would round

out. We tried everything. We even resorted to lying

him on his stomach at 5 months. He is twelve months

old and we are now starting the band. When we went to

our first follow-up. The measurements already showed

improvements. Not alot, mind you, but I definitely

think it is helping. It is such a hard decision. I

wish I would have made it sooner though. I hope I

have helped you and not made it even more difficult to

decide.

--- Amy Genovese <amygenovese@...> wrote:

> I am also in a similar situation. I went to CT and

> they gave Caden

> moderate plagio measurements, saying a band was

> strongly

> recommended. I then brought the measurements to my

> son's

> neurosurgeon (she was shocked by what CT wrote on

> the piece of

> paper), remeasured, showing us exactly what she was

> doing, drawing

> on his head, etc, and came up with normal to mild

> measurements. Her

> opinion was similar to your dilemma, CTs entire

> business is to put

> kids in helmets, and she is a skeptic. We then went

> and got another

> opinion with a cranial facial plastic surgeon, and

> he said mild to

> moderate, but eyeballed it, and did not do

> measurements. The plastic

> surgeon told us he did not put his daughter in a

> helmet, and her

> head was similar to my son's at 7 months. But, he

> was willing to

> support us and write the script if we felt strong

> enough about

> banding our son. So as crazy as we are, we went to

> see a Hanger

> orthotist, who was pretty indifferent about putting

> the helmet on

> Cade. CT pretty much told us we'd see improvement

> in 4 weeks,

> Hanger said we may not see any improvement. What on

> earth do we do

> with this information??? I think my husband and I

> are leaning

> towards not banding, but it is causing much stress

> in our

> lives...what if we make the wrong decision? Cade's

> head has

> definitely rounded out since age 2.5 months, when we

> started to

> aggresively reposition, but he still has unresolved

> tort. He really

> is a cute boy, and when I mention it to people, they

> claim they

> don't notice until I point it out, when I make them

> look at his head

> from the top. Besides CT, no one (medical, personal

> friends or

> family) is really encouraging the helmet.

>

>

>

>

>

>

>

>

>

>

> For more plagio info, go to

> www.plagiocephaly.org/support

>