Advise

[Guest guest]

Hello,

I just joined the group and am looking for advise. My daughter was

diagnosed with torticollis and plagiocephaly at 3 months old. We have

completely corrected the torticollis with PT. Then with aggressive

repositioning, etc. we have made some improvement with the

plagiocephaly. However, Isabelle is now 5 months old and continues to

have a flattened right occipital area with slight anterior protrusion

of her right ear. She has no facial abnormalities at all and everyone

keeps telling us she is a " very mild " case. My husband and I went for

a consultation for helmet therapy. We are just really torn on what to

do. She is such a happy, developmentally appreciate baby that I would

hate to cause her discomfort for " cosmetic " reasons; yet, I want to

offer her all the opportunities available to her. Has anyone NOT done

helmet therapy and seen good results?

Thanks,

Becky

[Guest guest]

Hi Becky:I work in Centerville and live in West Chester Ohio (small world!) *smile*While it's true that there are not too many in the area -- there are options if necessary. It really depends on your child's circumstances. My son was breech, and had a very long and narrow headshape (called "scaphocephalic" or "dolichocephalic"), and we had to rule out sagittal craniosynostosis with CT scan, etc. We were relieved that it wasn't that, but no one had any options for us to help it (doctor said "He'll just have a big head") until I found Cranial Technologies on-line, and we ended up traveling to Chicago every two weeks or so for his treatment, which took about 4 and 1/2 months. That was in 2000. They have an office now in Cleveland, too, I think. For us, his shape precluded him from laying naturally on his back (his chin was forced to his chest), so we did it to get a "slope," and

for a more natual look. It didn't bother him then, and it helped significantly. I would do it again in a heartbeat, travel and all.I just wanted to offer that there are other Ohio companies -- though I understand that it's often not possible to travel for treatment.Take care.mom to Quinn, born 11/99, DOCband graduate 10/00 for scaphocephalic head shape.brief bio and pix at http://www.cappskids.org/CAPPSPlagioKidQuinn.htm>------- Original Message ------->From : Becky Stone[mailto:bacutie7@...]>Sent : 8/16/2007 9:56:43 AM>To : Plagiocephaly >Cc : >Subject : RE: Re: Advise>>Thanks so much for your response. My husband and I arehaving opposing opinions. I am leaning towards bandi

ng and he is not.It is not a matter of financial obligation...it is rather can weemotionally handle our daughter in a helmet for the next 6 to 9months. We live in Dayton, Ohio so the only place that even offershelmets is Orpro and they offer the starband. I have tried to takepictures, but it just does not seem to catch the asymmetry, but I willtry again and see if I cannot be somewhat computer savoy and post it.It looks like Sydney used the starband...how did you like it? Whendid she start wearing it? How long did she have to wear it? Howquickly did you see results? Would you do it again? What was thehardest part of pursuing helmet therapy?Thanks in advance for your help.Becky> >> > Hello, > > > > I just joined the group and am looking for advise. My daughter was> > diagnosed with torticollis and plagiocephaly at 3 months old. We have> > completely corrected the torticollis with PT. Then with aggressive> > repositioning, etc. we have made some improvement with the> > plagiocephaly. However, Isabelle is now 5 months old and continues to> > have a flattened right occipital area with slight anterior protrusion> > of her right ear. She has no facial abnormalities at all and everyone&gt

; > keeps telling us she is a "very mild" case. My husband and I went for> > a consultation for helmet therapy. We are just really torn on what to> > do. She is such a happy, developmentally appreciate baby that I would> > hate to cause her discomfort for "cosmetic" reasons; yet, I want to> > offer her all the opportunities available to her. Has anyone NOT done> > helmet therapy and seen good results? > > > > Thanks,> > Becky> >>For more plagio info

[Guest guest]

THANKS so much for your candid information! It is a small

world...I actually work in Wilmington, Ohio but live in Huber Heights.

I was pretty devastated when we first got the diagnosis and had alot

of self blame. " Why did I not see that she had torticollis. What kind

of mother does not notice. " Then I felt angry that no one mentioned

to this new mom about Tummy Time. All I was told was " back to sleep " ,

but now I know after the fact. Yet, once you get over the self blame

you realize that you have a beautiful baby girl and no matter what she

is the light of your life. Now, I just need to give her every

opportunity of success and if that means traveling to Cleveland then

so be. In fact, after reading your info, I contacted Cranial tech and

my husband and I have a consultation appointment on the 25th of

August. They did have a Columbus office, but are closing it at the

end of this month.

How old was Quinn when he got his band?

Thanks again,

Becky

> > >

> > > Hello,

> > >

> > > I just joined the group and am looking for advise. My daughter was

> > > diagnosed with torticollis and plagiocephaly at 3 months old. We

have

> > > completely corrected the torticollis with PT. Then with aggressive

> > > repositioning, etc. we have made some improvement with the

> > > plagiocephaly. However, Isabelle is now 5 months old and

continues to

> > > have a flattened right occipital area with slight anterior

protrusion

> > > of her right ear. She has no facial abnormalities at all and

everyone

> > > keeps telling us she is a " very mild " case. My husband and I

went for

> > > a consultation for helmet therapy. We are just really torn on

what to

> > > do. She is such a happy, developmentally appreciate baby that I

would

> > > hate to cause her discomfort for " cosmetic " reasons; yet, I want to

> > > offer her all the opportunities available to her. Has anyone NOT

done

> > > helmet therapy and seen good results?

> > >

> > > Thanks,

> > > Becky

> > >

> >

>

>

>

>

> For more plagio info

[Guest guest]

Thanks, , I have an appointment with Cranial Tech in

Cleveland on the 25th of August. If you do not mind me asking, why

did Sydney have to keep hers on longer?

Thanks,

Becky

> > > >

> > > > Hello,

> > > >

> > > > I just joined the group and am looking for advise. My

daughter was

> > > > diagnosed with torticollis and plagiocephaly at 3 months old.

> We have

> > > > completely corrected the torticollis with PT. Then with

aggressive

> > > > repositioning, etc. we have made some improvement with the

> > > > plagiocephaly. However, Isabelle is now 5 months old and

> continues to

> > > > have a flattened right occipital area with slight anterior

> protrusion

> > > > of her right ear. She has no facial abnormalities at all and

> everyone

> > > > keeps telling us she is a " very mild " case. My husband and I

> went for

> > > > a consultation for helmet therapy. We are just really torn on

> what to

> > > > do. She is such a happy, developmentally appreciate baby that I

> would

> > > > hate to cause her discomfort for " cosmetic " reasons; yet, I

want to

> > > > offer her all the opportunities available to her. Has anyone

> NOT done

> > > > helmet therapy and seen good results?

> > > >

> > > > Thanks,

> > > > Becky

> > > >

> > >

> >

>

[Guest guest]

Sydney's brachy was severe, so it took a while to correct. We kept her

band on until she had outgrown it - which was 5 mo later. The decision

of when to stop is subjective based on the childs appearance, and the

opinions of the doctors and orthos. Our doc and ortho both recommended

keeping her band on as long as possible. I was ready to quit after 4

mo, but I'm glad I stuck with it to get additional correction. Her

head is still not prefect, but the flaws are not noticeable.

I still wish I had known to vary her head position when she was

younger, and also that I known about plagio/brachy when we asked about

her flat spot at the 2 mo check. But overall we are luck to have

gotten a referral to a specialist at 4 mo - at which point it was

already severe.

I think Cranial Tech has a more rigid protocol and won't let you keep

a band for 5 mo because they feel the holding power is lost by then.

Also they use a thinner foam so I don't think it can last as long.

Having said that I think their results are at least as good as

starband, so don't worry about that. It is just that if we had gone

with CT it would have been a shorter time, or maybe multiple bands.

-christine

sydney 19 mo starband grad

> > > > >

> > > > > Hello,

> > > > >

> > > > > I just joined the group and am looking for advise. My

> daughter was

> > > > > diagnosed with torticollis and plagiocephaly at 3 months old.

> > We have

> > > > > completely corrected the torticollis with PT. Then with

> aggressive

> > > > > repositioning, etc. we have made some improvement with the

> > > > > plagiocephaly. However, Isabelle is now 5 months old and

> > continues to

> > > > > have a flattened right occipital area with slight anterior

> > protrusion

> > > > > of her right ear. She has no facial abnormalities at all and

> > everyone

> > > > > keeps telling us she is a " very mild " case. My husband and I

> > went for

> > > > > a consultation for helmet therapy. We are just really torn on

> > what to

> > > > > do. She is such a happy, developmentally appreciate baby that I

> > would

> > > > > hate to cause her discomfort for " cosmetic " reasons; yet, I

> want to

> > > > > offer her all the opportunities available to her. Has anyone

> > NOT done

> > > > > helmet therapy and seen good results?

> > > > >

> > > > > Thanks,

> > > > > Becky

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Becky, I'm glad the information helped!PLEASE don't beat yourself up about this -- it's amazing that after so many years how plagiocephaly is still not talked about in many hospitals, and pediatricians are still clueless. My son is 7, and the same concerns by moms wondering why they weren't ever told about this were around then... I just thought they would be better information out there by now... especially by the hospitals. It took the insurance company and the pediatric neurosurgeon over 4 weeks to communicate (for some reason, besides the letter of medical neccessity, they needed to "talk" to him -- so we didn't get casted until his 6-month birthday, and we got the band 2 weeks after that. He got it off just before his 1st b-day -- at the end of October (his b-day is in November). We never had any problems with the process or band at all -- and actually, it helped my mom and him bond a bit, as I dr

ove to Toledo (where I am originally from) on Thursday night, spent the night with my mom, and we drove together to Chicago on Friday -- so she got to see him a lot more than if we didn't have to travel. *smile*>------- Original Message ------->From : Becky Stone[mailto:bacutie7@...]>Sent : 8/16/2007 5:02:37 PM>To : Plagiocephaly >Cc : >Subject : RE: Re: Advise>>THANKS so much for your candid information! It is a smallworld...I actually work in Wilmington, Ohio but live in Huber Heights.I was pretty devastated when we first got the diagnosis and had alotof self blame. "Why did I not see that she had torticollis. What kindof mother does not notice." Then I felt angry that no one mentionedto this new mom about Tummy Time. All I was told was "ba

ck to sleep",but now I know after the fact. Yet, once you get over the self blameyou realize that you have a beautiful baby girl and no matter what sheis the light of your life. Now, I just need to give her everyopportunity of success and if that means traveling to Cleveland thenso be. In fact, after reading your info, I contacted Cranial tech andmy husband and I have a consultation appointment on the 25th ofAugust. They did have a Columbus office, but are closing it at theend of this month. How old was Quinn when he got his band?Thanks again,Becky>> > Hi Becky:> > I work in Centerville and live in West Chester Ohio (small world!)*smile*> > While it's true that there are not too many in the area -- there areoptions if necessary. It really depends on your child'scircumstances. My son was br

eech, and had a very long and narrowheadshape (called "scaphocephalic" or "dolichocephalic"), and we hadto rule out sagittal craniosynostosis with CT scan, etc. We wererelieved that it wasn't that, but no one had any options for us tohelp it (doctor said "He'll just have a big head") until I foundCranial Technologies on-line, and we ended up traveling to Chicagoevery two weeks or so for his treatment, which took about 4 and 1/2months. That was in 2000. They have an office now in Cleveland,too, I think. For us, his shape precluded him from laying naturallyon his back (his chin was forced to his chest), so we did it to get a"slope," and for a more natual look. It didn't bother him then, andit helped significantly. I would do it again in a heartbeat, traveland all.> > I just wanted to offer that there are other Ohio companies -- thoughI understand that it's often not possible to travel for treatment.>

> Take care.> > mom to Quinn, born 11/99, DOCband graduate 10/00 for scaphocephalichead shape.> brief bio and pix at http://www.cappskids.org/CAPPSPlagioKidQuinn.htm >

[Guest guest]

Hi Becky,

There are at least 4 of us on the board who are also going to

Cleveland right now. Two people were just cast last weekend and I am

on my second band from them right now. We went 16 weeks in the first

band and I decided and asked for the second band. We could have

graduated but my daughter's head shape was extremely severe and

complicated to correct. The Cleveland office is great and we have had

a very smooth time with the band even with driving 3 hours each way.

I have been so happy with the DOCband and it's results. I highly

recommend it and Cleveland CT (it is actually called Straight Ahead)

> > > > >

> > > > > Hello,

> > > > >

> > > > > I just joined the group and am looking for advise. My

> daughter was

> > > > > diagnosed with torticollis and plagiocephaly at 3 months

old.

> > We have

> > > > > completely corrected the torticollis with PT. Then with

> aggressive

> > > > > repositioning, etc. we have made some improvement with the

> > > > > plagiocephaly. However, Isabelle is now 5 months old and

> > continues to

> > > > > have a flattened right occipital area with slight anterior

> > protrusion

> > > > > of her right ear. She has no facial abnormalities at all

and

> > everyone

> > > > > keeps telling us she is a " very mild " case. My husband and

I

> > went for

> > > > > a consultation for helmet therapy. We are just really torn

on

> > what to

> > > > > do. She is such a happy, developmentally appreciate baby

that I

> > would

> > > > > hate to cause her discomfort for " cosmetic " reasons; yet, I

> want to

> > > > > offer her all the opportunities available to her. Has

anyone

> > NOT done

> > > > > helmet therapy and seen good results?

> > > > >

> > > > > Thanks,

> > > > > Becky

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Becky,

By the way the PT Karmel Ross at Cleveland is actually an

expert in Tort. She teachers PT's all across the country. You should

request she evaluate the Torticollis as well. It was very helpful to

have her insights to bring to my local PT.

> > > > > >

> > > > > > Hello,

> > > > > >

> > > > > > I just joined the group and am looking for advise. My

> > daughter was

> > > > > > diagnosed with torticollis and plagiocephaly at 3 months

> old.

> > > We have

> > > > > > completely corrected the torticollis with PT. Then with

> > aggressive

> > > > > > repositioning, etc. we have made some improvement with the

> > > > > > plagiocephaly. However, Isabelle is now 5 months old and

> > > continues to

> > > > > > have a flattened right occipital area with slight anterior

> > > protrusion

> > > > > > of her right ear. She has no facial abnormalities at all

> and

> > > everyone

> > > > > > keeps telling us she is a " very mild " case. My husband

and

> I

> > > went for

> > > > > > a consultation for helmet therapy. We are just really

torn

> on

> > > what to

> > > > > > do. She is such a happy, developmentally appreciate baby

> that I

> > > would

> > > > > > hate to cause her discomfort for " cosmetic " reasons; yet,

I

> > want to

> > > > > > offer her all the opportunities available to her. Has

> anyone

> > > NOT done

> > > > > > helmet therapy and seen good results?

> > > > > >

> > > > > > Thanks,

> > > > > > Becky

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Hi Becky,

I highly doubt your little one would have to wear the band 5 months

especially if your baby is mild like you say. Cranial Technologies

(I believe) only lets a child be in one band for 16 weeks at the

most unless they outgrow it sooner. At 5 months, the baby is

growing so quickly that results should be a lot quicker than that of

an older baby. Our son wore his DOC band 2 months and was moderate

and started at 7.5 months (this is fast considering his age and

moderate but it can happen). The band really is no big deal.

Within a week or so you are use to it and the babies look so cute in

them. Babies adjust really quick (usually...our son did!) My son

was the same happy baby and learned to do things while in the band.

He is developmentally on target. He is now 14 months old and doing

great. Good luck in your decision.

PS: I was for the band but my husband believed our son's head was

fine. My husband was very supportive with how I felt about my son's

head shape (I hated it...hence wanted to band). My husband is glad

we banded.

> > > > > >

> > > > > > Hello,

> > > > > >

> > > > > > I just joined the group and am looking for advise. My

> > daughter was

> > > > > > diagnosed with torticollis and plagiocephaly at 3 months

old.

> > > We have

> > > > > > completely corrected the torticollis with PT. Then with

> > aggressive

> > > > > > repositioning, etc. we have made some improvement with

the

> > > > > > plagiocephaly. However, Isabelle is now 5 months old and

> > > continues to

> > > > > > have a flattened right occipital area with slight

anterior

> > > protrusion

> > > > > > of her right ear. She has no facial abnormalities at

all and

> > > everyone

> > > > > > keeps telling us she is a " very mild " case. My husband

and I

> > > went for

> > > > > > a consultation for helmet therapy. We are just really

torn on

> > > what to

> > > > > > do. She is such a happy, developmentally appreciate

baby that I

> > > would

> > > > > > hate to cause her discomfort for " cosmetic " reasons;

yet, I

> > want to

> > > > > > offer her all the opportunities available to her. Has

anyone

> > > NOT done

> > > > > > helmet therapy and seen good results?

> > > > > >

> > > > > > Thanks,

> > > > > > Becky

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Hi Becky,

Sorry I didn't respond sooner. My son, Tommy, is almost 5 months and we just got our DOC band from Cleveland this past Saturday (tonight is is his first full night - fingers crossed!). He has adjusted very well. We were worried because he too is a very happy easy-going little guy and I did not want to cause any more stress in his life with PT twice a week already! I know that the decision to band is a tough one. The commitment that you make is a great one...but we believe that the results will be well worth it. It has been a very emotional time for me up to this point and I was very worried about how Saturday would go - it was not bad at all. He even napped in the band on the way home! I think that I had time to prepare myself - and when my little guy smiles up with his band on, I truly don't see the band, but I see his beautiful blue eyes and those sweet little dimples!

I live in Lebanon and the drive to Cleveland is not fun, about 4 - 4.5 hours. Please feel free to email me if I can offer any help or words of encouragement as you work through all the options and advice. It sounds like you are totally doing all the right things so far. Congratulations to resolve the tort so early - I know that is no easy matter and can be alot of tears (probably more yours than Isabelle's!).

Best of luck!

Maureen

Mom to Will 2.5

Tommy 4.5 months - DOC band 8/18/07, brachy, plagio and right tort

Re: Advise

Hi Becky,There are at least 4 of us on the board who are also going to Cleveland right now. Two people were just cast last weekend and I am on my second band from them right now. We went 16 weeks in the first band and I decided and asked for the second band. We could have graduated but my daughter's head shape was extremely severe and complicated to correct. The Cleveland office is great and we have had a very smooth time with the band even with driving 3 hours each way. I have been so happy with the DOCband and it's results. I highly recommend it and Cleveland CT (it is actually called Straight Ahead)> > > > >> > > > > Hello, > > > > > > > > > > I just joined the group and am looking for advise. My> daughter was> > > > > diagnosed with torticollis and plagiocephaly at 3 months old. > > We have> > > > > completely corrected the torticollis with PT. Then with> aggressive> > > > > repositioning, etc. we have made some improvement with the> > > > > plagiocephaly. However, Isabelle is now 5 months old and> > continues to> > > > > have a flattened right occipital area with slight anterior> > protrusion> > > > > of her right ear. She has no facial abnormalities at all and> > everyone> > > > > keeps telling us she is a "very mild" case. My husband and I> > went for> > > > > a consultation for helmet therapy. We are just really torn on> > what to> > > > > do. She is such a happy, developmentally appreciate baby that I> > would> > > > > hate to cause her discomfort for "cosmetic" reasons; yet, I> want to> > > > > offer her all the opportunities available to her. Has anyone> > NOT done> > > > > helmet therapy and seen good results? > > > > > > > > > > Thanks,> > > > > Becky> > > > >> > > >> > >> >>

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