Re: treating non-synostotic scaphocephaly with doc band

[Guest guest]

Hi Amy,

welcome to the group. I'm glad there is no cranio involved. I hope

Quinn will answer too, but I think you should definitely go ahead with

the DOCband. My daughter wore a starband for brachy and did great. I

think your doctor is just ignorant, and there is no risk of brain

damage. My daughter has been on time or early for everything and her

brain seems in tip top shape to me. She wore a band for 5 mo out of 27

mo (her current age) and I am so glad we could do something to help

correct her head shape.

Please keep us posted on your decision.

-christine

sydney 2 yrs starband grad

>

> Hi Everyone - I just joined yesterday. My son is almost 4

> months old. He was born with a long narrow head and a very prominent

> occiput. Our Ped gave us a referal to the UCLA craniofacial clinic

> when he was 5 weeks old to have him evaluated for suspected sagittal

> craniosynostosis. Well, luckily his CT scans came back negative (well

> actually the radiologist read it as his left coronal suture was

> closing but the surgeons we have met with disagree and say he is fine,

> no surgery required).

>

> So with Cranio off the table we started researching the possibility of

> correcting his head shape a bit with helmet therapy. He also, because

> of the very prominent occiput, has developed some asymmetry since his

> head shape forced him to lie to one side. The Ped at UCLA

> cranio-facial prescribed a helmet to correct the asymmetry but told us

> flat out that there is no way a helmet could correct the scaphocephaly

> shape and that any claims by a company that they could were bogus. He

> also seemed to insinuate that trying to do so would actually be

> dangerous (as in, cause brain damage). When I asked specifically about

> the Doc band and cranial tech and their FDA approval to treat it he

> was dismissive and said he doesn't recommend them for various reasons

> (he seems to have a bit of a grudge over someone who used to work

> there who claimed to know more about helmet therapy than him or

> something) Anyway, I've seen kids here (Quinn, Blythe), as well as the

> paper about " sticky sagittal suture " that seem to directly contradict

> the info he gave us today. But when I pushed him he just seemed to get

> a bit defensive and dismissive. Kind of like he was annoyed that I had

> done any research before talking to him.

>

> We really aren't looking for a huge correction. It is not like I

> expect my son to end up with a perfectly round Charlie Brown head or

> anything. I happen to think he is adorable and perfect just the way he

> is. But if there is a way to normalize his head shape a little bit and

> make life a little easier for him down the road we want to do that. As

> it is I think he would have a very hard time finding a bicycle helmet

> that fits well and he can't lie on his back without his chin being

> forced down to his chest. He actually looks uncomfortable because of

> it sometimes.

>

> So now we're wondering how to proceed. If we do the helmet we would be

> going to him for follow up so I don't know how it would be to go to a

> doctor with a doc band which he specifically recommended against. I

> mean, we have the script so I guess we could just go get the helmet

> and not follow up with him and see if our regular ped would do follow

> up but he seemed to say that if we didn't follow up with a doctor who

> was an expert in this that we would risk causing damage to our son.

>

> I would love to hear from anyone else who had a kid treated for

> scaphocephaly (without synostosis) and what the info their doctors

> gave them is.

>

> Thanks in advance for any help. And sorry for the novel!

>

> here is a link to a pictures of his head shape.

> http://tinyurl.com/6mvs72

>

[Guest guest]

Welcome Amy-

I think Jen has a great point, you should go to CT and get the free

eval and see what they have to say about it. Don't let the doctor

discourage you or push you around. I would encourage others to chime

in about their experiences here, but I'm not quite sure I would see

the necessity of having to follow up with him during or after the

band treatment. Is that common practice for the majority of people?

A cranio surgeon wrote our script, somewhat reluctantly because of

my son's age, but was otherwise very nice about the whole thing, and

we actually do have a follow up appointment on Tuesday with him. But

I kind of felt it was unnecessary at first. The only reason I'm

going now is because I do have some questions about some things

going on with my son that I don't think will be corrected by the

band (the slope of one side of his head and his " droopy " eye). But

maybe my thought process is wrong and someone else can offer an

opinion on that. I do know how you feel though. One ped in our

office told me at least twice that helmets were a crock, but I went

ahead and did it anyway. Then when I went back to see another ped

for my son's 18 month checkup, I was all paranoid and trying to

avoid the other doctor because I was afraid of a confrontation!

I also might get one more opinion on that suture, it wouldn't hurt.

Good luck!

Jake-19m (tort resolved/rt plagio/DOCBand 9 weeks)

Jordan-4

>

> Hi Everyone - I just joined yesterday. My son is almost 4

> months old. He was born with a long narrow head and a very

prominent

> occiput. Our Ped gave us a referal to the UCLA craniofacial clinic

> when he was 5 weeks old to have him evaluated for suspected

sagittal

> craniosynostosis. Well, luckily his CT scans came back negative

(well

> actually the radiologist read it as his left coronal suture was

> closing but the surgeons we have met with disagree and say he is

fine,

> no surgery required).

>

> So with Cranio off the table we started researching the

possibility of

> correcting his head shape a bit with helmet therapy. He also,

because

> of the very prominent occiput, has developed some asymmetry since

his

> head shape forced him to lie to one side. The Ped at UCLA

> cranio-facial prescribed a helmet to correct the asymmetry but

told us

> flat out that there is no way a helmet could correct the

scaphocephaly

> shape and that any claims by a company that they could were bogus.

He

> also seemed to insinuate that trying to do so would actually be

> dangerous (as in, cause brain damage). When I asked specifically

about

> the Doc band and cranial tech and their FDA approval to treat it he

> was dismissive and said he doesn't recommend them for various

reasons

> (he seems to have a bit of a grudge over someone who used to work

> there who claimed to know more about helmet therapy than him or

> something) Anyway, I've seen kids here (Quinn, Blythe), as well as

the

> paper about " sticky sagittal suture " that seem to directly

contradict

> the info he gave us today. But when I pushed him he just seemed to

get

> a bit defensive and dismissive. Kind of like he was annoyed that I

had

> done any research before talking to him.

>

> We really aren't looking for a huge correction. It is not like I

> expect my son to end up with a perfectly round Charlie Brown head

or

> anything. I happen to think he is adorable and perfect just the

way he

> is. But if there is a way to normalize his head shape a little bit

and

> make life a little easier for him down the road we want to do

that. As

> it is I think he would have a very hard time finding a bicycle

helmet

> that fits well and he can't lie on his back without his chin being

> forced down to his chest. He actually looks uncomfortable because

of

> it sometimes.

>

> So now we're wondering how to proceed. If we do the helmet we

would be

> going to him for follow up so I don't know how it would be to go

to a

> doctor with a doc band which he specifically recommended against. I

> mean, we have the script so I guess we could just go get the helmet

> and not follow up with him and see if our regular ped would do

follow

> up but he seemed to say that if we didn't follow up with a doctor

who

> was an expert in this that we would risk causing damage to our son.

>

> I would love to hear from anyone else who had a kid treated for

> scaphocephaly (without synostosis) and what the info their doctors

> gave them is.

>

> Thanks in advance for any help. And sorry for the novel!

>

> here is a link to a pictures of his head shape.

> http://tinyurl.com/6mvs72

>

[Guest guest]

I think you are perfectly fine following-up with your ped. We never

saw anyone other than Cranial Tech and our ped. You won't cause

damage to your son by not following up with the neurosurgeon doc. We

were/are very pleased with the results our son got. I would band

again in a heartbeat. There are no risks that I know of with

banding. CT will say there are no risks and it wouldn't get FDA

approved if there were.

Let us know what you decide.

\

>

> Hi Everyone - I just joined yesterday. My son is almost 4

> months old. He was born with a long narrow head and a very

prominent

> occiput. Our Ped gave us a referal to the UCLA craniofacial clinic

> when he was 5 weeks old to have him evaluated for suspected

sagittal

> craniosynostosis. Well, luckily his CT scans came back negative

(well

> actually the radiologist read it as his left coronal suture was

> closing but the surgeons we have met with disagree and say he is

fine,

> no surgery required).

>

> So with Cranio off the table we started researching the

possibility of

> correcting his head shape a bit with helmet therapy. He also,

because

> of the very prominent occiput, has developed some asymmetry since

his

> head shape forced him to lie to one side. The Ped at UCLA

> cranio-facial prescribed a helmet to correct the asymmetry but

told us

> flat out that there is no way a helmet could correct the

scaphocephaly

> shape and that any claims by a company that they could were bogus.

He

> also seemed to insinuate that trying to do so would actually be

> dangerous (as in, cause brain damage). When I asked specifically

about

> the Doc band and cranial tech and their FDA approval to treat it he

> was dismissive and said he doesn't recommend them for various

reasons

> (he seems to have a bit of a grudge over someone who used to work

> there who claimed to know more about helmet therapy than him or

> something) Anyway, I've seen kids here (Quinn, Blythe), as well as

the

> paper about " sticky sagittal suture " that seem to directly

contradict

> the info he gave us today. But when I pushed him he just seemed to

get

> a bit defensive and dismissive. Kind of like he was annoyed that I

had

> done any research before talking to him.

>

> We really aren't looking for a huge correction. It is not like I

> expect my son to end up with a perfectly round Charlie Brown head

or

> anything. I happen to think he is adorable and perfect just the

way he

> is. But if there is a way to normalize his head shape a little bit

and

> make life a little easier for him down the road we want to do

that. As

> it is I think he would have a very hard time finding a bicycle

helmet

> that fits well and he can't lie on his back without his chin being

> forced down to his chest. He actually looks uncomfortable because

of

> it sometimes.

>

> So now we're wondering how to proceed. If we do the helmet we

would be

> going to him for follow up so I don't know how it would be to go

to a

> doctor with a doc band which he specifically recommended against. I

> mean, we have the script so I guess we could just go get the helmet

> and not follow up with him and see if our regular ped would do

follow

> up but he seemed to say that if we didn't follow up with a doctor

who

> was an expert in this that we would risk causing damage to our son.

>

> I would love to hear from anyone else who had a kid treated for

> scaphocephaly (without synostosis) and what the info their doctors

> gave them is.

>

> Thanks in advance for any help. And sorry for the novel!

>

> here is a link to a pictures of his head shape.

> http://tinyurl.com/6mvs72

>