Re: Wanting to know results of parents who did not band/helmet their baby.

[Guest guest]

Hello,

Sorry, my response is slow, but I was hoping someone with direct experience

would respond. My daughter was banded. Most people who stay in this group decide

to band. Those who don't often leave this group. There is another group

called OlderPlag with parents who didn't band - most of them are unhappy because

they didn't know about banding or listened to their ped that it would " round out

on its own " . But there are also parents who didn't band and are fine with the

decision - they just don't join groups :-). The other thing I would say is some

people do achieve results with aggressive repositioning. Especially with young

babies. I know several people in this category.

Here is an email I received in January. I think she meant to post it to the

group, but it is an answer to your question...

" I joined this group about a month ago.. I opt'd not to have treatment. My

daughter is only 4 months old we caught hers early. I am happy to report with

therapy and the aggressive positioning I received from this website she has

improved greatly.. She went from moderate to mild... in 6 weeks time. My Sophia

has tortacolis also. We have been in therapy less then a month she went from

every week to now twice a month. We are a rare case and there was extream

invention on my part. He her TP is amazed at how well we have done... Her

tortacolis is almost gone as well and her symmetry is returning to normal. Her

left cheek was much thinner then the right and her ear was bent.. NOT ANY MORE

ALL IS NORMAL I am not gonna say it's been an easy journey for us.. But the

information I received from this website played a significant role in whats

happened with my Sophia... It's true I have not posted because we are doing so

well so this is my update also! I had all intentions of banding my daughter if

there was no improvements by 6 months old...We are a rare case and it was caught

very early! During high periods of growth. My doctor does not believe in banding

at all either. But I had all intentions on finding one that did if it did not

get better... Many blessing to you on your journey... I found power in prayer! "

Hope this helps.

-christine

sydney, 5 yrs starband grad

>

> My baby girl was diagnosed with Tort at 2 1/2 months. She is now 7 months and

after 4 months of OT we were referred to a cranial specialist. Even though they

said there was much improvement, to our shock they recommended the helmet. She

does not have so much of the flat head, but cranial asymmetry with a slight

bulge on the right side of her forehead. The doctors and ourselves are the only

ones who even notice. No one in our family sees the problem until we point it

out to them. It is breaking our hearts trying to decide whether to do the

helmet or not. Specialist said it was purely cosmetic & would not interfere with

development. Also our insurance does not pay for the banding. We are wanting to

hear from parents who did not band their baby & what were the results & their

experience.

> Thank you

>

[Guest guest]

I'm not sure if i've replied to this right, but I wanted to offer our experience. Peyton had horrible tort, reflux, and an array of other problems. Around the same time we got her diagnosis of cerebral palsy the PT mentioned if we wanted to band, we needed to do it soon. I flipped, and became OBSESSIVE about her head. But, no one else saw what I saw. It was so frustrating. I even became obsessed with looking at adults heads and thinking if they would have been banded maybe they wouldn't have a giant forehead and sloped head, etc. I'm proud to say that at almost 17 months, no one at all notices anything wrong with her head. She had mild plagio and severe brachy based on numbers. I did 2 ortho consults, it was summer and without the support of anyone, I just couldn't put her through it. She didn't sleep at all anyway, and I knew I would get blamed by DH for her sleeping even less because of the helmet, etc. I sometimes wish I would have done it..but honestly I think her head is about as close to normal as an average person. I plan on writing a post after this Wed because she has to get measured for surefit SMO's and I plan to ask the orthotist if he can measure her head for me & give me an update on where she is at # & % wise. Peyton's pedi & the neurosurgeon did both tell us they believed she would round out on her own once she was able to sit up, etc.Good luck with your decision, I literally lost sleep over it.Krystle

>

> My baby girl was diagnosed with Tort at 2 1/2 months. She is now 7 months and after 4 months of OT we were referred to a cranial specialist. Even though they said there was much improvement, to our shock they recommended the helmet. She does not have so much of the flat head, but cranial asymmetry with a slight bulge on the right side of her forehead. The doctors and ourselves are the only ones who even notice. No one in our family sees the problem until we point it out to them. It is breaking our hearts trying to decide whether to do the helmet or not. Specialist said it was purely cosmetic & would not interfere with development. Also our insurance does not pay for the banding. We are wanting to hear from parents who did not band their baby & what were the results & their experience.

> Thank you

>