A Second Band

March 27, 2002

Hi,

My 8 month older daughter, has been in her Starband since the

end of January. We have had many days in between where she couldn't

wear it due to red spots, sick or something. We would go for

adjustments and things would be fine again for awhile. In fact,

technically this is her second band but it off her first mold. The

ortho had made another one 4 weeks after the first one because he

didn't like the way it was fitting her.

To date, we have seen results. I wouldn't say dramatic but defintely

obvious. Not to mention, her hair has been growing rapidly and she

had no hair before.

When we first went to the consultation with the ortho in early

January the ortho told us would need to be in her band 2 -3

months if she wears it 22 hours a day. As long as 's band was

fitting properly, she was wearing it 22 hours a day. Yesterday, we

had a follow up appointment and the ortho said that she will probably

be in this band another month and then she will need another band

until she is 12-13 months old. I was floored. He had told us 2-3

months and now he's saying a total of 6-7 months. That is a BIG

differnece. He said it would be our choice of course. I feel so

misled. I'm pretty angry. The ortho said that her head was pretty

severe and she is not corecting as fast as he had hope. Didn't he

see her at her worst when he first saw her in early January before

her casting? He had no real answers for me except to say that it a

personal choice and my choice. I just feel so decieved. Did this

happen to anyone? Am I overreacting? I have a neurosurgeon

appointment next week so I am anxious to see what he says.

Orginally, he too told me 2 months.

I'm very depressed about this today. Also, has torticollis.

She gets PI 3x a week through EI.

I awould appreciate any response to my rant.

Thanks,

Dina and (banded 1/25/02)

(LI, NY)

March 27, 2002

Hi Dina:

I'm sorry you're so disappointed . The good news is that 's

head has improved since she has been wearing her band. The bad news

is, that she probably needs to wear it a bit longer than you had

expected. How long a child will wear a band is anyone's guess.

Noone really knows. I'm sure your orthotist was estimating when he

had originally told you she'd only be in it 2-3 mos.. Many of us in

the group have had their children in their helmet or band longer than

originally anticipated. It is VERY frustrating, I know. If you had

some fit problems early on with 's 1st band, and she was not

wearing it at times, then you might have not achieved as great

results as hoped for. Maybe she hasn't grown all that much while in

her band either?

Keep your chin up - the important thing is that 's head has

improved! Your orthotist is hopefully wrong again in saying she

could use another 4 or 5 mos in a new band ; )

See what the neurosurgeon has to say - let us know too.

Debbie Abby's mom DOCGrad

MI

> Hi,

> My 8 month older daughter, has been in her Starband since the

> end of January. We have had many days in between where she

couldn't

> wear it due to red spots, sick or something. We would go for

> adjustments and things would be fine again for awhile. In fact,

> technically this is her second band but it off her first mold. The

> ortho had made another one 4 weeks after the first one because he

> didn't like the way it was fitting her.

>

> To date, we have seen results. I wouldn't say dramatic but

defintely

> obvious. Not to mention, her hair has been growing rapidly and she

> had no hair before.

>

> When we first went to the consultation with the ortho in early

> January the ortho told us would need to be in her band 2 -3

> months if she wears it 22 hours a day. As long as 's band was

> fitting properly, she was wearing it 22 hours a day. Yesterday, we

> had a follow up appointment and the ortho said that she will

probably

> be in this band another month and then she will need another band

> until she is 12-13 months old. I was floored. He had told us 2-3

> months and now he's saying a total of 6-7 months. That is a BIG

> differnece. He said it would be our choice of course. I feel so

> misled. I'm pretty angry. The ortho said that her head was pretty

> severe and she is not corecting as fast as he had hope. Didn't he

> see her at her worst when he first saw her in early January before

> her casting? He had no real answers for me except to say that it a

> personal choice and my choice. I just feel so decieved. Did this

> happen to anyone? Am I overreacting? I have a neurosurgeon

> appointment next week so I am anxious to see what he says.

> Orginally, he too told me 2 months.

> I'm very depressed about this today. Also, has torticollis.

> She gets PI 3x a week through EI.

> I awould appreciate any response to my rant.

>

> Thanks,

> Dina and (banded 1/25/02)

> (LI, NY)

March 27, 2002

Dina,

My son, , wore his STARband from 08/22/01 to 03/08/02 for a total of almost 7 mos., and he was considered to have mild plagio. Actually, he is still wearing it for naps and at night time and he will continue to wear it at these times for a little while longer (until the helmet no longer fits). Our orthotist did recommend that we do this, but he said it was totally up to us. So that was our personal choice to have him sleep in it. If he can get even a tiny bit more correction - why not? He is so used to sleeping in it, he doesn't even know it is on. Even though he has it off all day, it does not bother him when we put it on him to sleep. His orthotist said that his "soft spot" is still open enough, therefore his head is still malleable, to get a little more correction. He got approx. 90% correction total - so far.

Anyway, at the beginning of his therapy we were told that would wear his band for approx. 4 - 6 mos. Possibly 4, more than likely 6. He was put in his band a little late -- 3 days shy of his 7 mo. birthday. We saw very good correction at the beginning, when he had some good growth spurts. Then things seemed to slow down a bit, ped. said growth slows down between 9 -12 mos. I'm sure that is the reason for the almost 7 mo. time frame for his therapy. He is also in his original band. Our orthotist saw no need to cast him for another. You said that you have an appt. with your neurologist next week. Well, our neurosurgeon wanted to see 6 wks. into his STAR therapy. That was in mid-Oct. '01. His said he thought would be in his helmet for maybe another month or so!!! Uh, he was in it for another 5 mos.!!!! So I wonder where he was coming from by saying only another month!! (Actually, he recommended we try re-positioning him from the start versus using helmet therapy. Re-positioning at 7 mos.?! I doubt that would happen!!!!)

I've never felt "deceived" but each time we took for a adjustment we were hoping his orthotist would be saying the therapy was winding down. When turned one (01/25/02), 5 mos. into his STAR therapy, his PT (for his tort) said she didn't think he needed to wear his band full-time anymore - for nite and naps would be enough. We were soooo excited!! She phoned his orthotist and he requested we bring in. When our orthotist checked him out and told us he would like him to wear it a little longer we were so disappointed!! But we stuck it out and 's head now looks great.

The real key to success is getting a good orthotist who knows what he/she is doing. We couldn't have asked for a better orthotist than the one we had. You said that you were told at the beginning that would only need to wear the band for 2 mos. and that she was considered to have severe plagio? I know you are upset, and I do not want to upset you any further but 2 months does not seem like hardly enough time to get the amount of correction I would think you would need for severe plagio. Wait until your appt. with your neurologist and see what he has to say. Does your PT give you any input? Our PT actually was the one who suggested helmet therapy to us.

There will be days when you are completely depressed - then they will pass. I remember when was first cast for his helmet - time does fly by - I know you do not think so now, but it will go by quickly. Good - luck and take care. Let us know what the neuro. says.

AnnMarie & (14 mos.)

STAR grad

Tort resolved

For more plagio info

March 27, 2002

Dina, I am sorry to hear that you are frustrated, but I honestly

don't think your ortho purposely 'deceived' you. Its hard to

determine how long a child will be in a band, because so much of it

depends on how quickly the child grows. If your daughter didn't hit

a lot of growth spurts, combined with the fact that you had some

trouble with the first band, then it will take the band longer to

work to its fullest extent. Many members here have had their child

in 2 bands for a period of 6 or more months, and are so happy that

they have gone with another band. Kepp us updated on what you

decide, and what your neuro has to say! Good luck!

Niki

Kaylie & Danny (STAR grads)

Phila., PA