Re: Update on Graces poor fitting - and a THANK YOU to you all !!!!!

[Guest guest]

Please don't give up!!!!! I know it's looking really depressing

right now, but I would ask your orthotist to please work with you and

have it either fixed or make a new one asap (even if she needs to be

recasted..UGH!!!!!!!). I know some others have had problems with

their original Starbands so maybe one of them can give you guidance.

To be honest, if the helmet doesn't fit just right ,or is causing

skin breakdowns, it's not going to do poor Grace a lick of good. I

have heard of some ditching the first helmet and demanding a second

at no additional charge. Again, maybe some of those members can give

you hints on how they accomplished that. I'm sure your ortho will be

more than willing to somehow fix this problem. It sounds like you are

on the right track being upfront with your disappointment from the

beginning. So sorry for this mess. Hugs to both of you!

I look forward to your next posting/update. Please try to stay

positive.

Good luck,

Crista (Mom to 7 3/4 mo DOCBanded 5/13)

Plagiocephaly , " chucksusanb " <chucksusanb@a...> wrote:

> All of you are so great! Thank you tremendously for giving me such

> good advice, listening, and taking the time to answer my

questions.

> I do so appreciate it. I'll try to answer all of your questions.

>

> I took Grace in for another update. Since getting her helmet 1.5

> weeks ago, she has gone in for 4 total fittings...each time making

it

> worse. From the time they took the casting until we received the

> helmet was exactly 14 days. I was somewhat skeptical of the way

they

> took the casting, as it was falling apart though. Perhaps she had

a

> growth spurt during that time.

>

> I have gone to the & Filipis location in Rochester,

Michigan.

> They order there orthotics from Orthomerica (just for the record)

and

> it is a Starband. She slept in her helmet last night and this

> morning her whole face was red. I will post pics once I can upload

> them. I feel HORRIBLE. The spots have still not faded and that

was

> over 10 hours ago.

>

> The orthotic trimed some of the edges, and when she brought it

back,

> I told her I was very disapointed in the way it looked. It

honestly

> looked like she goudged her finger and took out some of the

> material. It wasn't even blended. I frankly told her it looked

> terrible. At this point I do not care. Although my Orthotist is a

> very nice woman, my daughters care comes first. She then layered

the

> inside with a padding that has latex and warned me that it could

> cause irritation. Well she had the helmet on for 15 minutes and

> broke out. UGH So it has been off.

>

> In addition to her DEEP red spots, if it isn't tight and crinkling

> her eyes and forhead, it is falling down over her eyes.

>

> I am really disapointed in this whole process. My insurance didn't

> pay anything for it, so I am out $1,800.00 and the helmet doesn't

> even work. I feel like throwing in the towel and leaving my

precious

> child the way she is.

>

> Anyway, thank you everyone. I am SOOO sorry to vent this all to

> you. Thanks for listening.

>

> Do you think I should ask them to remold it????? But then again, I

> will have to wait another 2 weeks to even get it back.

[Guest guest]

Hi,

I am so sorry for the fit issues Grace is having to go through!

From what you describe, it sounds to me like the band is not working

out at all. Red spots not fading after 10 hours, a padding material

being used even though it could cause irritation, four adjustments

in a week and a half, and the fact that you now have a Starband that

is still unusable seem to add up to me that you need an entirely new

band. I know there will be a delay to be recast and get a new

Starband, but the band you have now certainly isn't working from

what you describe.

Do you feel comfortable with the skill level of the ortho you are

using there? I was surprised to read that she did use a padding in

the band that she told you would probably cause irritation; that

doesn't seem like a good idea to me when dealing with a product for

infants' heads. I think I mentioned this in a previous reply, but

does she have a lot of experience/training with the Starband or

active bands in general? If you end up having a concern about this

ortho, perhaps you could consider using another ortho at the same

facility if you decide to start over with a new Starband there.

As Angie posted, you can pursue some support from Orthomerica on

this, if the and Philipis ortho won't support you on

providing a new Starband casting and band free of charge asap. Does

your ortho recognize that this particular Starband is not working

for your baby in spite of the adjustments, etc.?

I wish I could be of more help; I have read posts of others who

found themselves in your same situation, so I hope they see your

post and respond! In some cases, the replacement band from the same

facility was wonderful, like night and day from the ill-fitting

band! In other cases, the group member went to a different

brand/facility with a much better outcome for their baby.

Would you let us know what happens as far as Grace's situation

goes? Let us know what you decide, and if you need any support in

the matter.

Take care,

Christie (Mom to Repo'd Remy)

> All of you are so great! Thank you tremendously for giving me

such

> good advice, listening, and taking the time to answer my

questions.

> I do so appreciate it. I'll try to answer all of your questions.

>

> I took Grace in for another update. Since getting her helmet 1.5

> weeks ago, she has gone in for 4 total fittings...each time making

it

> worse. From the time they took the casting until we received the

> helmet was exactly 14 days. I was somewhat skeptical of the way

they

> took the casting, as it was falling apart though. Perhaps she had

a

> growth spurt during that time.

>

> I have gone to the & Filipis location in Rochester,

Michigan.

> They order there orthotics from Orthomerica (just for the record)

and

> it is a Starband. She slept in her helmet last night and this

> morning her whole face was red. I will post pics once I can

upload

> them. I feel HORRIBLE. The spots have still not faded and that

was

> over 10 hours ago.

>

> The orthotic trimed some of the edges, and when she brought it

back,

> I told her I was very disapointed in the way it looked. It

honestly

> looked like she goudged her finger and took out some of the

> material. It wasn't even blended. I frankly told her it looked

> terrible. At this point I do not care. Although my Orthotist is

a

> very nice woman, my daughters care comes first. She then layered

the

> inside with a padding that has latex and warned me that it could

> cause irritation. Well she had the helmet on for 15 minutes and

> broke out. UGH So it has been off.

>

> In addition to her DEEP red spots, if it isn't tight and crinkling

> her eyes and forhead, it is falling down over her eyes.

>

> I am really disapointed in this whole process. My insurance

didn't

> pay anything for it, so I am out $1,800.00 and the helmet doesn't

> even work. I feel like throwing in the towel and leaving my

precious

> child the way she is.

>

> Anyway, thank you everyone. I am SOOO sorry to vent this all to

> you. Thanks for listening.

>

> Do you think I should ask them to remold it????? But then again,

I

> will have to wait another 2 weeks to even get it back.

[Guest guest]

No, no, no !!

This sounds horrible. Poor little Grace should not being going

through this. Does your ortho have plagio experience? Is there

someone else that does?

I would call their office tomorrow and tell them that the band is not

comfortable for Grace and that you would request (make that demand)

that she be rescanned or casted and another Starband rushed to you.

If they refuse I would contact Orthomerica in Florida and describe

your situation.

Not for anything but what would latex do? I've heard of putting in

soft moleskin but latex? That doesn't sound gentle on the skin.

Keep us posted,

Natasha

> All of you are so great! Thank you tremendously for giving me such

> good advice, listening, and taking the time to answer my

questions.

> I do so appreciate it. I'll try to answer all of your questions.

>

> I took Grace in for another update. Since getting her helmet 1.5

> weeks ago, she has gone in for 4 total fittings...each time making

it

> worse. From the time they took the casting until we received the

> helmet was exactly 14 days. I was somewhat skeptical of the way

they

> took the casting, as it was falling apart though. Perhaps she had

a

> growth spurt during that time.

>

> I have gone to the & Filipis location in Rochester,

Michigan.

> They order there orthotics from Orthomerica (just for the record)

and

> it is a Starband. She slept in her helmet last night and this

> morning her whole face was red. I will post pics once I can upload

> them. I feel HORRIBLE. The spots have still not faded and that

was

> over 10 hours ago.

>

> The orthotic trimed some of the edges, and when she brought it

back,

> I told her I was very disapointed in the way it looked. It

honestly

> looked like she goudged her finger and took out some of the

> material. It wasn't even blended. I frankly told her it looked

> terrible. At this point I do not care. Although my Orthotist is a

> very nice woman, my daughters care comes first. She then layered

the

> inside with a padding that has latex and warned me that it could

> cause irritation. Well she had the helmet on for 15 minutes and

> broke out. UGH So it has been off.

>

> In addition to her DEEP red spots, if it isn't tight and crinkling

> her eyes and forhead, it is falling down over her eyes.

>

> I am really disapointed in this whole process. My insurance didn't

> pay anything for it, so I am out $1,800.00 and the helmet doesn't

> even work. I feel like throwing in the towel and leaving my

precious

> child the way she is.

>

> Anyway, thank you everyone. I am SOOO sorry to vent this all to

> you. Thanks for listening.

>

> Do you think I should ask them to remold it????? But then again, I

> will have to wait another 2 weeks to even get it back.

[Guest guest]

Reading through the messages...I noticed you got Grace's Star Band

in Rochester, MI. I live in Troy, MI and My daughter , 12

months just got her band/Helmet 4 days ago from Becker Orthopedic,

Birmingham. It looks just like the star band (it may very well be it)

I am sorry to hear you have been having trouble. It is difficult

enough to see your poor child in something you would rather not have

to put them in LET ALONE have to endure pain or problems with it. So

far I have been very pleased with Becker orthopedic. She got casted

and within a week got her helmet. Granted I was back for a fitting

today but I had noticed when she crawled her helmet dropped below

her eyes and one side burn portion of the band was pushing into her

pudgy cheek none of this however causing her red marks likes Grace.

So, todays visit went well they seemed to take care of all of my

concerns and fell asleep with it on in the car ride home

(this is a child that hats to wear hats??) GO FIGURE..it cant be

that uncomfortable. Yet as her mother...I am constanly looking at

her to see if it is too snug or possibly causing her pain. Like

Graces Helmet, they carved some away (but smoothly) and did add some

material foam to the inside where it was loose (again smooth) The

Ortho said with each new change I could expect to see her again

within the week.

I wish you luck and if you are in the area and need support...let me

know, thats what this group is all about.

(sorry for the long message)

Take care,

[Guest guest]

Poor little Grace. Please don't give up just yet. You might want

to get her into a new helmet with a rush on it so there isn't that

much gap between casting and fitting. Maybe you should consider

going somewhere else all in all. Your Ortho might be a nice lady,

but from your story doesn't sound like she has much experience on

banding. You should be able (with a lot of fighting and maybe an

attorney) to get your money back sinse services werent' met. How

far are you from the Becker facility? Or any other options?

Hopefully some other members that had similar experiences will jump

in and give some good advice

Sandy Willow's Mom

Torticollis resolved

Cranio Germany Grad 04

> All of you are so great! Thank you tremendously for giving me

such

> good advice, listening, and taking the time to answer my

questions.

> I do so appreciate it. I'll try to answer all of your questions.

>

> I took Grace in for another update. Since getting her helmet 1.5

> weeks ago, she has gone in for 4 total fittings...each time making

it

> worse. From the time they took the casting until we received the

> helmet was exactly 14 days. I was somewhat skeptical of the way

they

> took the casting, as it was falling apart though. Perhaps she had

a

> growth spurt during that time.

>

> I have gone to the & Filipis location in Rochester,

Michigan.

> They order there orthotics from Orthomerica (just for the record)

and

> it is a Starband. She slept in her helmet last night and this

> morning her whole face was red. I will post pics once I can

upload

> them. I feel HORRIBLE. The spots have still not faded and that

was

> over 10 hours ago.

>

> The orthotic trimed some of the edges, and when she brought it

back,

> I told her I was very disapointed in the way it looked. It

honestly

> looked like she goudged her finger and took out some of the

> material. It wasn't even blended. I frankly told her it looked

> terrible. At this point I do not care. Although my Orthotist is

a

> very nice woman, my daughters care comes first. She then layered

the

> inside with a padding that has latex and warned me that it could

> cause irritation. Well she had the helmet on for 15 minutes and

> broke out. UGH So it has been off.

>

> In addition to her DEEP red spots, if it isn't tight and crinkling

> her eyes and forhead, it is falling down over her eyes.

>

> I am really disapointed in this whole process. My insurance

didn't

> pay anything for it, so I am out $1,800.00 and the helmet doesn't

> even work. I feel like throwing in the towel and leaving my

precious

> child the way she is.

>

> Anyway, thank you everyone. I am SOOO sorry to vent this all to

> you. Thanks for listening.

>

> Do you think I should ask them to remold it????? But then again,

I

> will have to wait another 2 weeks to even get it back.