Re: hi - new to group and frustrated

[Guest guest]

I am so sorry about your experience? What kind of helmet(s) are you using? I have never heard of anything like this!Sent from my Verizon Wireless BlackBerryFrom: "zipporaht" <zipporaht@...>Date: Mon, 11 Jan 2010 23:45:41 -0000<Plagiocephaly >Subject: hi - new to group and frustrated Hi,I just joined this group after coming home with a second helmet for my 9 month old son after the first one just would not work, and this one looks like it won't either! I am so frustrated that I want to rip my hair out. Not only will the helmets not work, but we're also having to fight the insurance company.I just want this to be over with. It started in September or October and I was hoping we'd be almost done. But the first helmet after a while left huge welts on the side of his head and his forehead. It was impossible to get on and off because it was so tight, and would make my baby cry. We had it adjusted like 4 times before we finally gave up and had a new one made. But every adjustment would just start a new welt. He still has a spot where he was bleeding from like two months ago. This second helmet actually comes in two pieces. We were really hoping that it would work better. I only had it on for like an hour after taking it off, and it already has left a huge indentation in the middle on top of his head where the pieces meet! Right by his soft spot. Today we had to wait for over an hour for the orthotist to see us. I am so mad I can't see straight. He didn't even take measurements today, but I didn't think about until later because I was so tired and hungry I couldn't see straight.When will this madness end???p.s. if you read all of this you are angel. Thanks for listening.

[Guest guest]

I am so sorry you are going through all of this. What facility and location are you goung to? Maybe someone in the group has gone their too. Is there any other ortho you can see at the location?

Angie

hi - new to group and frustrated

Hi,I just joined this group after coming home with a second helmet for my 9 month old son after the first one just would not work, and this one looks like it won't either! I am so frustrated that I want to rip my hair out. Not only will the helmets not work, but we're also having to fight the insurance company.I just want this to be over with. It started in September or October and I was hoping we'd be almost done. But the first helmet after a while left huge welts on the side of his head and his forehead. It was impossible to get on and off because it was so tight, and would make my baby cry. We had it adjusted like 4 times before we finally gave up and had a new one made. But every adjustment would just start a new welt. He still has a spot where he was bleeding from like two months ago. This second helmet actually comes in two pieces. We were really hoping that it would work better. I only had it on for like an hour after taking it off, and it already has left a huge indentation in the middle on top of his head where the pieces meet! Right by his soft spot. Today we had to wait for over an hour for the orthotist to see us. I am so mad I can't see straight. He didn't even take measurements today, but I didn't think about until later because I was so tired and hungry I couldn't see straight.When will this madness end???p.s. if you read all of this you are angel. Thanks for listening.

[Guest guest]

Hi Angie,

Thanks for your note. I'm going to Hanger in Lexington, Kentucky. The ortho

guy Steve appears to be the only one there. He is very nice, but today was

unusually busy at their office(we're usually the only ones there), and he seemed

distracted and in a hurry.

I'm just so tired. I really want to stick with it and have it work. I guess

I'm in a whining mood today.

I'm upset with my insurance for claiming they wrote us, our doctor, and the

Hanger office the reason why they denied our claim, when none of us received a

letter. We just barely got our appeal in before the time ran out, and now we

will have to go back for another adjustment due to this dent in his head

already. When we finally got their reason why, they said he didn't meet the

measurement requirement, which is dumb because his measurement was like more

than twice as large as their minimum (6mm, my son's was 14mm).

Is it normal to have so many adjustments needed? Do I just need to tough it out?

Has anybody used the two piece helmet with success? I'm envying the people who

seem to love Cranial Tech, because there isn't a facility anywhere near here.

*sigh*

I feel like maybe we should just give up after this second helmet flop. I don't

know what he's measuring now, but I know he's gotten a little better because

he's got a little bump in the back of his head now like he should when before it

was totally flat. His face doesn't appear to be asymmetrical, and his ears seem

fine. His forehead doesn't seem lopsided or anything. I dunno.

>

> I am so sorry you are going through all of this. What facility and location

are you goung to? Maybe someone in the group has gone their too. Is there any

other ortho you can see at the location?

>

> Angie

>

[Guest guest]

Your post makes me sad and angry. I am sorry your family is having to struggle

so much. Our families already have a lot on our plates from the plagio alone.

A little more info about the helmet, facility, etc may help us offer some

advice.

Your fam is in my thoughts and prayers.

- Des

Auburn, CA

Zoey 8.5 months STARband 1/4/10

>

> I am so sorry you are going through all of this. What facility and location

are you goung to? Maybe someone in the group has gone their too. Is there any

other ortho you can see at the location?

>

> Angie

> hi - new to group and frustrated

>

>

>

> Hi,

>

> I just joined this group after coming home with a second helmet for my 9

month old son after the first one just would not work, and this one looks like

it won't either! I am so frustrated that I want to rip my hair out. Not only

will the helmets not work, but we're also having to fight the insurance company.

>

> I just want this to be over with. It started in September or October and I

was hoping we'd be almost done. But the first helmet after a while left huge

welts on the side of his head and his forehead. It was impossible to get on and

off because it was so tight, and would make my baby cry. We had it adjusted like

4 times before we finally gave up and had a new one made. But every adjustment

would just start a new welt. He still has a spot where he was bleeding from like

two months ago.

>

> This second helmet actually comes in two pieces. We were really hoping that

it would work better. I only had it on for like an hour after taking it off, and

it already has left a huge indentation in the middle on top of his head where

the pieces meet! Right by his soft spot. Today we had to wait for over an hour

for the orthotist to see us. I am so mad I can't see straight. He didn't even

take measurements today, but I didn't think about until later because I was so

tired and hungry I couldn't see straight.

>

> When will this madness end???

>

> p.s. if you read all of this you are angel. Thanks for listening.

>

[Guest guest]

Hi Zipporah,

I'm right around the corner (so to speak), in Cincinnati, Ohio.

If I were you, I would consider bringing your child to the Hanger facility near

Cincinnati Children's Hospital, which is one of the biggest children's hospitals

in the country. We haven't yet gone for my daughter's appointment there, but

they run a weekly " plagio clinic " , at which they see children with this issue.

Because the hospital diagnoses a lot of these cases, the Hanger facility here

has a great deal of experience dealing with children's helmet fittings. So I

suspect that they are true experts by now. I realize that Cincinnati is an 1

1/2 hour away from Lexington, which is definitely a schlep. But my husband

works in Lexington, and makes the trip twice a week, so it's definitely

practical to manage it.

Best of luck.

> >

> > I am so sorry you are going through all of this. What facility and

location are you goung to? Maybe someone in the group has gone their too. Is

there any other ortho you can see at the location?

> >

> > Angie

> >

>

[Guest guest]

Well I have. Maysa's first helmet from ECA, the kidcap, used to split open from the top. You could literally fold it up.

I don't know but I don't have a good feeling about your son's helmet. How far is the closest CT or STARband location to you? I'd recommend you try and seek treatment somewhere else.

Leila,Maysa, 23.5 mo. DOC band Grad 5.26.09www.mymaysa.wordpress.com

From: kelly.monks@... <kelly.monks@...>Subject: Re: hi - new to group and frustratedPlagiocephaly Date: Monday, January 11, 2010, 8:35 PM

I am so sorry about your experience? What kind of helmet(s) are you using? I have never heard of anything like this!

Sent from my Verizon Wireless BlackBerry

From: "zipporaht" <zipporaht (DOT) com>

Date: Mon, 11 Jan 2010 23:45:41 -0000

<Plagiocephaly>

Subject: hi - new to group and frustrated

Hi,I just joined this group after coming home with a second helmet for my 9 month old son after the first one just would not work, and this one looks like it won't either! I am so frustrated that I want to rip my hair out. Not only will the helmets not work, but we're also having to fight the insurance company.I just want this to be over with. It started in September or October and I was hoping we'd be almost done. But the first helmet after a while left huge welts on the side of his head and his forehead. It was impossible to get on and off because it was so tight, and would make my baby cry. We had it adjusted like 4 times before we finally gave up and had a new one made. But every adjustment would just start a new welt. He still has a spot where he was bleeding from like two months ago. This second helmet actually comes in two pieces. We were really hoping that it would work better. I only had it on for like an hour after

taking it off, and it already has left a huge indentation in the middle on top of his head where the pieces meet! Right by his soft spot. Today we had to wait for over an hour for the orthotist to see us. I am so mad I can't see straight. He didn't even take measurements today, but I didn't think about until later because I was so tired and hungry I couldn't see straight.When will this madness end???p.s. if you read all of this you are angel. Thanks for listening.

[Guest guest]

Hi ,

Thanks about the note on Cincinnati. I didn't know about this facility, and it

is only an hour for me since we actually live north of Lexington. I will

definitely be looking into it. If Cincy doesn't work out, I'm wondering if I

should trek to Chicago for Cranial Tech?? Is that crazy?

Thanks so much for everyone's words. It's nice to hear others that can relate.

> > >

> > > I am so sorry you are going through all of this. What facility and

location are you goung to? Maybe someone in the group has gone their too. Is

there any other ortho you can see at the location?

> > >

> > > Angie

> > >

> >

>

[Guest guest]

So Sorry you are having such troubles! Remind me, what kind of band do

you have?

If the ortho cannot get a good fit, it could be from a bad scan or

cast, or a bad ortho. Either way you should be able to petition to get

your $ back.

Have you thought of starting over at a new place?

Jen

Mom to Luli - 3 yrs old

Torticollis, Plagio, Syringomyelia

hi - new to group and frustrated

Hi,

I just joined this group after coming home with a second helmet for my

9 month old son after the first one just would not work, and this one

looks like it won't either! I am so frustrated that I want to rip my

hair out. Not only will the helmets not work, but we're also having to

fight the insurance company.

I just want this to be over with. It started in September or October

and I was hoping we'd be almost done. But the first helmet after a

while left huge welts on the side of his head and his forehead. It was

impossible to get on and off because it was so tight, and would make my

baby cry. We had it adjusted like 4 times before we finally gave up

and had a new one made. But every adjustment would just start a new

welt. He still has a spot where he was bleeding from like two months

ago.

This second helmet actually comes in two pieces. We were really hoping

that it would work better. I only had it on for like an hour after

taking it off, and it already has left a huge indentation in the middle

on top of his head where the pieces meet! Right by his soft spot.

Today we had to wait for over an hour for the orthotist to see us. I

am so mad I can't see straight. He didn't even take measurements

today, but I didn't think about until later because I was so tired and

hungry I couldn't see straight.

When will this madness end???

p.s. if you read all of this you are angel. Thanks for listening.

[Guest guest]

There was one mother on here from CO about a year a go that had a horrid time with a helmet (might have even been the Hanger brand as well).  Her child had sores from skin break down and then staph infections on top of it.  I think she went through two bands and finally ended up flying to the nearest CT.  It was a lot of work, time and money for her, but in the end it she was satisfied with the results.  So, no.  It is not crazy to go out of your way for better treatment.

As for how often you go for adjustments, part of it depends on the band.  Passive ones tend to need less frequent adjustments than their active counterparts.  The rest depends on how fast your child is growing.  Going once a week or more is pretty common, especially in the beginning. At 9mos I think we were going once every 2-3 weeks, unless some bad red spots showed up indicating we needed a sooner adjustment.

We used the Danmar brand which is considered " passive " and isn't as popular as others.  It is two pieces that fit together, but they overlap into one shape on the head.  There are no gaps.  We never had the issues you are talking about where the two parts meet.

We had excellent results.  After two bands the assym is gone.  Considering where we started that's excellent and even better than expected.  When we learned of the brand we were going with I found there isn't overwhelming positive info out there about it like there is for CT.  I've also learned it isn't the device itself so much as it is the ortho behind it that makes the difference.  If I were you I would check out the other Hanger location that is more experienced in general with plagio.  Perhaps they can even fit your current helmet properly.

From your issues, it sounds like there is most defiantly fitting problems.  I'm sure you know that red marks from pressure points are expected.  Some are completely normal.  The " angry red " ones are an indication of an ill fitting helmet (time for an adjustment), and what you're describing sounds much so more serious that that. Hang in there.  There's still time to get a proper fitting helmet.

Detroit MIElaine (twin A), plagio & tort, grad 2nd helmet 6/09On Tue, Jan 12, 2010 at 1:07 PM, zipporaht <zipporaht@...> wrote:

 

Hi ,

Thanks about the note on Cincinnati. I didn't know about this facility, and it is only an hour for me since we actually live north of Lexington. I will definitely be looking into it. If Cincy doesn't work out, I'm wondering if I should trek to Chicago for Cranial Tech?? Is that crazy?

Thanks so much for everyone's words. It's nice to hear others that can relate.

> > >

> > > I am so sorry you are going through all of this. What facility and location are you goung to? Maybe someone in the group has gone their too. Is there any other ortho you can see at the location?

> > >

> > > Angie

> > >

> >

>

[Guest guest]

Is your baby young and outgrowing the helmet prior to getting it? What kind of helmet is it? It sounds like a local helmet if it comes in two pieces. Is it passive or active. Are the welts caused by tightness or something about the material of the band.

I guess these are a lot of questions, but it's hard to advise you on the direction to take without knowing the answers. Hang in there. There are lots of knowledgeable people on here and I'm sure that you can get some good advice.

, mom to , 28 months

STARband grad May 2009

Chiro and CST

land

hi - new to group and frustrated

Hi,I just joined this group after coming home with a second helmet for my 9 month old son after the first one just would not work, and this one looks like it won't either! I am so frustrated that I want to rip my hair out. Not only will the helmets not work, but we're also having to fight the insurance company.I just want this to be over with. It started in September or October and I was hoping we'd be almost done. But the first helmet after a while left huge welts on the side of his head and his forehead. It was impossible to get on and off because it was so tight, and would make my baby cry. We had it adjusted like 4 times before we finally gave up and had a new one made. But every adjustment would just start a new welt. He still has a spot where he was bleeding from like two months ago. This second helmet actually comes in two pieces. We were really hoping that it would work better. I only had it on for like an hour after taking it off, and it already has left a huge indentation in the middle on top of his head where the pieces meet! Right by his soft spot. Today we had to wait for over an hour for the orthotist to see us. I am so mad I can't see straight. He didn't even take measurements today, but I didn't think about until later because I was so tired and hungry I couldn't see straight.When will this madness end???p.s. if you read all of this you are angel. Thanks for listening.

[Guest guest]

Hi Jen,

I have a Hanger helmet. I was worried we would have to pay for this helmet that

doesn't even work. We're going in today for another fitting, so wish us luck!

My husband said this is their last chance as far as he's concerned.

I don't know what to do if we decide not to use this brand and then we get a

bill. I don't want to pay for it.

>

> So Sorry you are having such troubles! Remind me, what kind of band do

> you have?

> If the ortho cannot get a good fit, it could be from a bad scan or

> cast, or a bad ortho. Either way you should be able to petition to get

> your $ back.

> Have you thought of starting over at a new place?

>

> Jen

> Mom to Luli - 3 yrs old

> Torticollis, Plagio, Syringomyelia

>

> hi - new to group and frustrated

>

>

>

>

>

> Hi,

>

> I just joined this group after coming home with a second helmet for my

> 9 month old son after the first one just would not work, and this one

> looks like it won't either! I am so frustrated that I want to rip my

> hair out. Not only will the helmets not work, but we're also having to

> fight the insurance company.

>

> I just want this to be over with. It started in September or October

> and I was hoping we'd be almost done. But the first helmet after a

> while left huge welts on the side of his head and his forehead. It was

> impossible to get on and off because it was so tight, and would make my

> baby cry. We had it adjusted like 4 times before we finally gave up

> and had a new one made. But every adjustment would just start a new

> welt. He still has a spot where he was bleeding from like two months

> ago.

>

> This second helmet actually comes in two pieces. We were really hoping

> that it would work better. I only had it on for like an hour after

> taking it off, and it already has left a huge indentation in the middle

> on top of his head where the pieces meet! Right by his soft spot.

> Today we had to wait for over an hour for the orthotist to see us. I

> am so mad I can't see straight. He didn't even take measurements

> today, but I didn't think about until later because I was so tired and

> hungry I couldn't see straight.

>

> When will this madness end???

>

> p.s. if you read all of this you are angel. Thanks for listening.

>

[Guest guest]

We used Hanger too... but I have not heard of a hangerband in 2

pieces... i wonder if they farmed it out to starband and you got a

bivalve.

Is there a CT near you? If so, get an appt for a free consult.

Hang in there!!!

Jen

Mom to Luli - 3 yrs old

Torticollis, Plagio, Syringomyelia

hi - new to group and frustrated

>

>

>

>

>

> Hi,

>

> I just joined this group after coming home with a second helmet for

my

> 9 month old son after the first one just would not work, and this one

> looks like it won't either! I am so frustrated that I want to rip my

> hair out. Not only will the helmets not work, but we're also having

to

> fight the insurance company.

>

> I just want this to be over with. It started in September or October

> and I was hoping we'd be almost done. But the first helmet after a

> while left huge welts on the side of his head and his forehead. It

was

> impossible to get on and off because it was so tight, and would make

my

> baby cry. We had it adjusted like 4 times before we finally gave up

> and had a new one made. But every adjustment would just start a new

> welt. He still has a spot where he was bleeding from like two months

> ago.

>

> This second helmet actually comes in two pieces. We were really

hoping

> that it would work better. I only had it on for like an hour after

> taking it off, and it already has left a huge indentation in the

middle

> on top of his head where the pieces meet! Right by his soft spot.

> Today we had to wait for over an hour for the orthotist to see us. I

> am so mad I can't see straight. He didn't even take measurements

> today, but I didn't think about until later because I was so tired

and

> hungry I couldn't see straight.

>

> When will this madness end???

>

> p.s. if you read all of this you are angel. Thanks for listening.

>

[Guest guest]

Hi all,

Just wanted to update on our Hanger helmet. We went back again for another

adjustment, and this time we stayed forever until we worked out every issue we

had. The ortho gave us plenty of attention this time, and the weird dent/crease

on the top of his head is not there anymore! I still think I sort of see it in

one little corner, but it's so faint now that it may just be his hair bent.

There are two spots on each side of his head near the back which look a little

red for two long which we may go back for shaving down.

I guess I've finally come to realize it just takes a lot of patience (which I

ran out of a long time ago!) and working with the ortho to pay attention to you

as well as accepting that there will just be a lot of adjustments/shavings.

*sigh*

I'm trying to be more positive with this second helmet and the recent

adjustments. It seems a lot better to get on and off and not so tight. Almost

all the red spots are going away in 15 minutes now.

Have a good weekend,

~ Zipporah

>

>

>

>

>

>

>

> Is your baby young and outgrowing the helmet prior to getting it? What kind of

helmet is it? It sounds like a local helmet if it comes in two pieces. Is it

passive or active. Are the welts caused by tightness or something about the

material of the band.

>

>

>

> I guess these are a lot of questions, but it's hard to advise you on the

direction to take without knowing the answers. Hang in there. There are lots of

knowledgeable people on here and I'm sure that you can get some good advice.

>

>

>

> , mom to , 28 months

>

> STARband grad May 2009

>

> Chiro and CST

>

> land        

>

>

>

> hi - new to group and frustrated

>

>  

>

>

>

>

> Hi,

>

> I just joined this group after coming home with a second helmet for my 9 month

old son after the first one just would not work, and this one looks like it

won't either! I am so frustrated that I want to rip my hair out. Not only will

the helmets not work, but we're also having to fight the insurance company.

>

> I just want this to be over with. It started in September or October and I was

hoping we'd be almost done. But the first helmet after a while left huge welts

on the side of his head and his forehead. It was impossible to get on and off

because it was so tight, and would make my baby cry. We had it adjusted like 4

times before we finally gave up and had a new one made. But every adjustment

would just start a new welt. He still has a spot where he was bleeding from like

two months ago.

>

> This second helmet actually comes in two pieces. We were really hoping that it

would work better. I only had it on for like an hour after taking it off, and it

already has left a huge indentation in the middle on top of his head where the

pieces meet! Right by his soft spot. Today we had to wait for over an hour for

the orthotist to see us. I am so mad I can't see straight. He didn't even take

measurements today, but I didn't think about until later because I was so tired

and hungry I couldn't see straight.

>

> When will this madness end???

>

> p.s. if you read all of this you are angel. Thanks for listening.

>