Just got band yesterday - newbie to the band questions

[Guest guest]

Hello - my 5 month old little girl just got the Starband yesterday. She was

diagnosed with tort at 1 month and we monitored her head (she was born with a

flat spot) and it did not improve. She is 17mm asymmetrical.

I have a few questions as a newbie to having a child with a band:

1) She had a lot of trouble sleeping last night and mainly rolled to her side

to sleep. How long does it take for them to adjust to wearing the helmet to

sleep through the night again (I'm a newly single mom so all of the night time

wake ups are on me and I worked hard to get her to sleep through the night!

2) The band slips down to right about her eyes, below her eye brows. Is that

too low? The Orthotist said to make sure her one eye isn't 'squinting' and both

eyes seem to be able to open normally but the helmet is pretty low

3) I've noticed that she doesn't mind having the helmet adjusted on her head -

she HATES the sound of the velcro so she starts crying before you ever move the

helmet! Has anyone else had that experience? Did the child adjust to the

velcro sound?

4) I'm noticing that with the band on (for the first 12 hours at least), when

she lays flat, she is leaning toward the tort side, is this common and do they

get adjusted to wear the helmet and hold their head midline again?

Any other tips from Starband experienced parents?

Thanks!

Jenn

[Guest guest]

hi, grats on your new band. I can't say anything about the tort. My daughter adjusted quickly and had no problems sleeping with it. I do remember at 5 months of age I was getting up every 2 hours to feed baby so you must be utterly exhausted. I'm still at almost 2 working on the sleep through the night thing!The band sounds like it's too loose and you should tell your ortho about it when you see him in a few days. You don't want it too loose.You could always adjust her head to where you want it after she falls asleep.As for the velcro I've never had a problem but you could make a big deal just before and during like YAY and clap and put on a big loud show like you're having a good time so she will relate it to fun or distract her with a bottle or

toy.From: jlyons001 <jlyons001@...>Plagiocephaly Sent: Sun, February 27, 2011 5:40:49 AMSubject: Just got band yesterday - newbie to the band questions

Hello - my 5 month old little girl just got the Starband yesterday. She was diagnosed with tort at 1 month and we monitored her head (she was born with a flat spot) and it did not improve. She is 17mm asymmetrical.

I have a few questions as a newbie to having a child with a band:

1) She had a lot of trouble sleeping last night and mainly rolled to her side to sleep. How long does it take for them to adjust to wearing the helmet to sleep through the night again (I'm a newly single mom so all of the night time wake ups are on me and I worked hard to get her to sleep through the night!

2) The band slips down to right about her eyes, below her eye brows. Is that too low? The Orthotist said to make sure her one eye isn't 'squinting' and both eyes seem to be able to open normally but the helmet is pretty low

3) I've noticed that she doesn't mind having the helmet adjusted on her head - she HATES the sound of the velcro so she starts crying before you ever move the helmet! Has anyone else had that experience? Did the child adjust to the velcro sound?

4) I'm noticing that with the band on (for the first 12 hours at least), when she lays flat, she is leaning toward the tort side, is this common and do they get adjusted to wear the helmet and hold their head midline again?

Any other tips from Starband experienced parents?

Thanks!

Jenn

[Guest guest]

Jenn,

Hey there!! I'm also a mom of a baby in STARband...in Orlando, FL. This Wednesday will mark our 4th week and it has definitely been a journey. Let me address your issues:

1) Sleeping - You should have a schedule to "ease" into the helmet. In regards to naps, we've been letting our son sleep in just a t-shirt and diaper for his naps and then summer pj's at night. I'll be honest, his naps have gotten better but he does wake up during the night (he's been sleeping 12hrs/night since he was 14wks)...still. I go in and just change his diaper and start his music again...I don't talk to him or take him out of his crib. He has been going back to sleep almost immediately. I think he wakes up with the helmet (imagine how uncomfortable it must be) and so I just try and make him a little more comfortable with music and dry "buns."

2) Helmet fit - I think you have a problem. Our helmet did THE SAME THING for 2 weeks and I complained, complained, complained. Our orthotist just "assured" me that it was "normal" for the STARband to shift and told me our son just needed some more "holding points." I trusted and just kept adjusting and adjusting and adjusting until I was ready to scream!!! Our son woke up during the night with the helmet covering his eyes in sheer panic. At this point, I'd had enough!! Our appt. was on Valentine's Day and I insisted that something be done about the shifting. If the purpose of the helmet/band is supposed to keep certain parts of the skull/head from growing...certainly shifting wouldn't be good, right?! Much to our delight, we got a call on 2/16, telling us that they agreed, the helmet wasn't made correctly and they'd need to make a new one.

OHHHHH WOW! I didn't know whether to jump up in down in relief or scream in anger...2 weeks wasted (on a baby that was 9 1/2 months to start). We received our new STARband (no charge to us) on 2/22. It is much longer in the back and the front (it sits on his brows) and doesn't seem to shift as much. We are praying (hard) that this is the right fit. Our next appt. is on Wednesday 3/2...I think I'll ask for a scan to see our progress.

3) Velcro - I can't relate to this...our son never minded the velcro sound. Maybe you can sing a "diddy" while taking it off to distract from the velcro noise...or just give a yummy treat during removal of the band. That might help your baby doll to not be afraid.

4) Tort & Plagio - Our son had both tort and plagio...you MUST correct the tort or the helmet will not work. We have just started therapy to make sure that our sons tort has been corrected. I don't notice it anymore...but we want to be sure. I would ask your ped or neurosurgeon...surely they can refer you to someone for occupational therapy. **IF you can't afford it (I am a stay at home mom to our son...but my husband is in medical residency...NO WAY could we afford OT, the State of FL [and most other states] have programs that will cover the cost.)

****Please feel free to email me directly at k10fsu@...

Best of luck!!

~ D.

KDP

From: jlyons001 <jlyons001@...>Plagiocephaly Sent: Sun, February 27, 2011 8:40:49 AMSubject: Just got band yesterday - newbie to the band questions

Hello - my 5 month old little girl just got the Starband yesterday. She was diagnosed with tort at 1 month and we monitored her head (she was born with a flat spot) and it did not improve. She is 17mm asymmetrical.I have a few questions as a newbie to having a child with a band:1) She had a lot of trouble sleeping last night and mainly rolled to her side to sleep. How long does it take for them to adjust to wearing the helmet to sleep through the night again (I'm a newly single mom so all of the night time wake ups are on me and I worked hard to get her to sleep through the night! :)2) The band slips down to right about her eyes, below her eye brows. Is that too low? The Orthotist said to make sure her one eye isn't 'squinting' and both eyes seem to be able to open normally but the helmet is pretty low3) I've noticed that she doesn't mind having the helmet adjusted on her head - she HATES the sound of the velcro so she

starts crying before you ever move the helmet! Has anyone else had that experience? Did the child adjust to the velcro sound?4) I'm noticing that with the band on (for the first 12 hours at least), when she lays flat, she is leaning toward the tort side, is this common and do they get adjusted to wear the helmet and hold their head midline again?Any other tips from Starband experienced parents?Thanks!Jenn