confused and worried uk parent

[Guest guest]

Hello and welcome. I'm so sorry to hear of the worry and concern you are

going through right now. It is my understanding that a CT scan is the best

way to know for sure if you are dealing with cranio or plagio. It is a

precaution that is worth the effort and additional worry. My daughter had a

CT scan and while it was not a particularly pleasant experience, it was not

nearly as bad as I had envisioned it. After the results came back we knew for

sure what we were dealing with. I cannot see any problem with you going ahead

and being fitted with the helmet while you wait for the CT scan. We had

in her helmet before we had the official CT scan results.

I think you are doing all the right things right now. You are all set to get

the helmet fitted and you have the referral to get the CT scan done. I would

just keep doing what you are already doing. If by some chance the CT scan

shows cranio then you can cross that bridge when you get there. There is a

webpage out there called cappskids.org that has information about cranio and

also has a link to a cranio group just like this one, only for parents

of babies with cranio. I can really understand and relate to your concern,

but it really seems you are doing all the right things at this time. Good

luck and please keep us posted!

Marci (Mom to )

Oklahoma

PS - are you seeing Dr. Blecher for the helmet or someone else??

[Guest guest]

I have a son who is now six months old and who has lazy lambdoid

syndrome his head is twisted at the back and his ears are badly

misplaced he was also born with torticollis but that has now improved

after months of worry and upset and no support from medical

profession we went to see a surgeon in bristol and had a cast taken

of zacs head and we go back on thursday to have it fitted this was

all found out through my own searching any way we were trying to

adjust to all this when some one mentioned by looking at zack that he

could have craniosynostosis due to the severity of his head shape and

that he needs a cat scan and to be referred to birmingham for this i

am now very worried and scared and dont know what to do next we dont

want to put this hat on him if it would cause damage my mind is now

full of the thoughts of surgery etc he has all ready had normal x

rays taken that said he didnt have cranio but apparently the only

real way to detect this is by a cat scan please can any one help

[Guest guest]

Hi there:

I had similar concerns with my daughter worrying about cranio. She

also had xrays done that came back negative for craniosynostosis.

But after a few mos in a STARband that did not help her head shape,

people told me to get a CTscan or addt'l xrays to again rule out

cranio.. I learned that CTscans are the best way to get a diagnosis

of cranio or not. I decided not to get a CT scan or more xrays done

of my daughter & switched her to a diff. band that worked wonders on

her head, therefore, she did thankfully did not have cranio..

To be on the safe side, you might want to get a CT scan done of your

son's head. It is better to be safe than to be sorry.

You mentioned your son also had torticollis, if he had tort., then it

is very likely plagio that your son has. I am not saying that is for

sure, but tort. is a leading cause of plagio.

You already had your son casted for his helmet. I suggest still

getting it & having him fitted. In the mean time, schedule a CT scan

just to be on the safe side to rule out cranio. The helmet will not

do any harm to Zack's head. And if the helmet does improve his head

shape, then it cannot be cranio.

I am sorry you're so concerned right now. I know just how scared you

feel, I've been there .

Welcome to our group though, please let us know of anything you find

out. Good luck.

Debbie Abby's mom DOCGrad

MI

> I have a son who is now six months old and who has lazy lambdoid

> syndrome his head is twisted at the back and his ears are badly

> misplaced he was also born with torticollis but that has now

improved

> after months of worry and upset and no support from medical

> profession we went to see a surgeon in bristol and had a cast taken

> of zacs head and we go back on thursday to have it fitted this was

> all found out through my own searching any way we were trying to

> adjust to all this when some one mentioned by looking at zack that

he

> could have craniosynostosis due to the severity of his head shape

and

> that he needs a cat scan and to be referred to birmingham for this

i

> am now very worried and scared and dont know what to do next we

dont

> want to put this hat on him if it would cause damage my mind is now

> full of the thoughts of surgery etc he has all ready had normal x

> rays taken that said he didnt have cranio but apparently the only

> real way to detect this is by a cat scan please can any one help