Re: New to Board.....Question

[Guest guest]

Hello abj and welcome! I'm glad you have found our group.

My daughter was diagnosed with plagio by a neurosurgeon. We were referred to

this specialist after REPEATEDLY expressing our concern to our ped. He is the

one who recommended the helmet she received and he also ordered a CT scan to

rule out craniosynostosis. We did not use a DOCband, but many, many parents

here have used or are using the DOCband. I think you will find that those

parents are extremely happy and satisfied with that product. In my time with

this group it has been the consensus that Cranial Tech does not simply try to

" sell " their product. I have heard of instances where they did not recommend

a band for a child that in their estimation did not need one.

If your baby has tilt then the recommendation of PT is a good one. It sounds

like your baby has torticollis and getting that resolved through PT will help

in the correction of the plagio.

Good luck with your decision and I hope you will keep us posted on what you

decide to do. I think you will find this group to be an outstanding source of

advice, support and friendship.

Marci (Mom to )

Oklahoma

[Guest guest]

Hi, Welcome to the group. I'll try and address each one of your questions

according to our own personal experience. First of all, we knew our daughter

needed treatment because her head was not rounding out on its own like our

ped tol us it would. We brought it up at the 6 mo. checkup and were told it

would be fine. Our ped said she'd look again @ the 9 mo. checkup. Nothing had

changed in 3 mos. and we had to mention it @ the 9 mo.checkup. The ped was

getting ready to leave the room(she had finished the exam!) When I said, " Oh,

how about Jessie's head, there have been no changes what so ever in 3 mos. "

Then the ped suggested x-rays for craniosynostosis. When those came back fine

we were again told all was well. It wasn't until I read an article in

Babytalk magazine that I even heard of plagiocephaly. We knew after going

online and researching it, that our daughter had plagiocephaly. It was as

clear as the nose on my face. I knew at that moment we would pursue any

treatment available. So no, our ped did not catch it. I called her after I

realized what Jessie had and asked for a referral. She didn't think Jessie

needed it, but she gave us the referral. Originally she referred us to a

plastic surgeon, but it would be weeks before they could even see Jessie. So

I called our ped back and asked for another referral. This time she referred

us to a neurosurgeon. When I told them Jessie's age (10 1/2 mos.) and that we

were very anxious to get her in a helmet, they referred us directly to

Straight Ahead Pediatrics (physical therapists) whom they said would evaluate

and if necessary cast and treat Jessie for plagiocephaly. So we did that

without even seeing the neurosurgeon. I understand the diagnosis has to be

made by a plastic surgeon, neurosurgeon or neurologist in order for it to

even be considered by insurance but we weren't told this til we got to

Straight Ahead. After Jessie was measured and evaluated as severe, the PT

told us we could go to the neurosurgeon first and then back to Straight

Ahead, but we felt that would be wasting precious time because of Jessie's

age and to be honest with you we knew based on Jessie's head shape that we

were going with the helmet regardless what the neurosurgeon would suggest. So

that's what we did . She was casted 2 days later and in her helmet 1 week

later- exactly on her 11 mo. birthday. We did end up seeing the neurosurgeon

after Jessie was in her helmet so that he could look at her head x-rays from

when she was checked for craniosynostosis.(our PT suggested we do this). He

confirmed that she did not have craniosynostosis. He confirmed that she had

plagiocephaly but said it was mild(he did not measure her, he simply looked

at her) and that he wasn't sure he would have recommended a helmet had we

come to him first. He told us our daughter had a " windswept " appearance.

Those were his exact words. Did he somehow think windswept sounded better

than mishaped? Well to us it didn't, and we again knew that we had made the

right decision putting our daughter in the helmet. So I guess to address your

final concerns, second opinions are always an option but from what I've

researched and read from others in this support group it all comes down to

your gut instinct. I think some good questions to ask yourself are: Do I

think my child's head looks mishaped? Has anyone else commented about it? Has

it rounded out any on its own or does it seem the same over time? Please keep

in mind you child's age as well. The earlier they get in the helmet, the

better the rounding. I would say if your child has been evaluated and meets

the criteria then go for the helmet. I don't think they would tell you he/she

needed it if they didn't. I hope this has been helpful to you. I will keep

you all in my prayers as you make this important decision. Theresa (mom to

Jessie)

[Guest guest]

Hi Abj,

My ped dx with tort at 2 mnth check-up, from there she sent us to a

nuerologist. That Doc then gave us the referral for physical therapy. It's

interesting that you are learning about torticollis from CT- they see many

babies with mishappened heads with torticollis (among others)- this condition

is causing them to favor one side- I refer to it as " rubbing " it or " wearing "

it down on the side most often turned to. Please ask your Doc asap to get

the ball rolling on a dx for torticollis. Working on the tort is essential to

helping beat that flat spot- as well as many other physical aspects. We had

to get an MRI done to rule out any other cause for the head tilt (very rarely

they can be caused by abnormal bony fusion of the spine or bony anomolies).

Most torticollis is muscular, a tightening of the muscle, and is very fixable

through stretching exercises. Please check into the group

www.torticolliskids.org and torticolliskids for more tips,

support and great advice. I will attach a link of stretches and holds in

case you have not seen it. Please email me with any questions you may have-

I would be more than happy to help. Also, CT sent me home the first time I

went for a free eval.- they told me to reposition for a month to exhaust that

route. It didn't work. My experience was that they were not so eager for

$$$ that they would have told me anything- all you had to do was look at my

son to know they weren't kidding when they said he needed it (misaligned

ears, flat spot, mild bossing of forehead, puffier cheek, smaller eye, etc.).

By the way, my Doc told me he was mild to moderate too, and that he didn't

need a band. I disagreed and pushed for this myself. I feel he was more

than just mildly growing in the wrong direction, and am so glad I armed

myself with knowledge and instinct to make our decision, because he has very

mild facial asymmetry that is only really noticeable to us (and maybe the

plagio police that before was very noticeable to others. Good luck! Keep

us posted!

' Mom (tort resolved, DOC grad)