Need opinions, please

[Guest guest]

Hi everyone! Well, we just got back from our appointment with the Brace Shop. We met with an Orthotist/prosthetist. They make a band that looks very similar to the DOC band, but it is made locally. (Cincinnati)

My concerns:

1. has been diagnosed by our ped. as having "marked positional brachycephaly". When I asked this guy what the difference in treatment was between plagiocephaly and brachycephaly, he didn't even know what brachycephaly was. How can you treat a condition when you don't even know what it is?

2. When I asked how long would have to wear the band, he said that it would depend on -how well he tolerated. Seems odd. I thought he would say 22 or 23 hours.

3. There is NO follow-up! They don't ever see their patients again, not even to take "after" pictures! There is no one to monitor their progress, or to say when it is/isn't working, or when it is complete. I feel VERY uncomfortable just sticking this band on 's head, and then deciding on my own when his treatment is complete! How do they even know if their bands work? (I guess they assume that if the parents don't come back, then it worked)

4. They were ready to do the casting today! I had no idea, I thought they would measure, take an x-ray or CT scan or something. I guess we just totally skipped the step of being examined by a Neurosurgeon or Cranial-facial expert. I guess I just didn't realize that we were meeting with an Orthotist, and not a doctor.

Obviously we did not have him cast today. I don't know what to do now. I would really feel much better if 's treatment were being monitored. Unfortunately, our pediatrician is out for 3 weeks for her own surgery. I may just see if I can talk to one of the other peds in the group. I felt very uncomfortable with the knowledge (or lack of) that this guy (Orthotist) had. He'd never heard of the DOC band. (although theirs looks very similar) I gave him a copy of the CT on-line brochure, and some info that I had about FDA approval of cranial orthotic devices. He did not seem to know anything about FDA regulation.

I'm going to call Cranial Technologies, and ask them what generally needs to happen before an infant is fitted. What do you all think? Do I need to insist on seeing a neurosurgeon first? Do I need to insist on finding out if his sutures are still open before proceeding with helmet therapy?

Thanks for any advice, and sorry such a long post!

Amy and (3/22/00)

[Guest guest]

> Hi everyone! Well, we just got back from our appointment with the

Brace

> Shop. We met with an Orthotist/prosthetist. They make a band that

looks very

> similar to the DOC band, but it is made locally. (Cincinnati)

>

First I just want to say I am not that knowledgable on this as I am

in the beginning stages and trying repositioning right now. But I

can definetly see why you are concerned.

> My concerns:

>

> 1. has been diagnosed by our ped. as having " marked

positional

> brachycephaly " . When I asked this guy what the difference in

treatment was

> between plagiocephaly and brachycephaly, he didn't even know what

> brachycephaly was. How can you treat a condition when you don't

even know

> what it is?

I think you need to find someone who knows these medical conditions.

You have helped me now because I think maybe possible a parent should

have a telephone conference with the Dr's office to see just how up

to date they are on this material.

>

> 2. When I asked how long would have to wear the band,

he said

> that it would depend on -how well he tolerated. Seems

odd. I

> thought he would say 22 or 23 hours.

I really have to find specialists who really care and follow up.

When I went to my second opinion Dr and he told me he thinks Gunner

will be ok and his sutures are open. The discussion went on to a 6

month check up talk. I said I would like him looked at 5 months.

The Dr said I would just love to see Gunner and follow up with you!!

>

> 3. There is NO follow-up! They don't ever see their patients again,

not even

> to take " after " pictures! There is no one to monitor their

progress, or to

> say when it is/isn't working, or when it is complete. I feel VERY

> uncomfortable just sticking this band on 's head, and

then

> deciding on my own when his treatment is complete! How do they even

know if

> their bands work? (I guess they assume that if the parents don't

come back,

> then it worked)

>

> 4. They were ready to do the casting today! I had no idea, I

thought they

> would measure, take an x-ray or CT scan or something. I guess we

just

> totally skipped the step of being examined by a Neurosurgeon or

> Cranial-facial expert. I guess I just didn't realize that we were

meeting

> with an Orthotist, and not a doctor.

>

From what I've read some specialists can diagnose without the x-ray

or CT scan. I'm a firm believer go with your instincts. If you feel

a x-ray or ct scan would help you in a more precise diagnoses I would

discuss that with the dr.

> Obviously we did not have him cast today. I don't know what to do

now. I

> would really feel much better if 's treatment were being

> monitored. Unfortunately, our pediatrician is out for 3 weeks for

her own

> surgery. I may just see if I can talk to one of the other peds in

the group.

> I felt very uncomfortable with the knowledge (or lack of) that this

guy

> (Orthotist) had. He'd never heard of the DOC band. (although theirs

looks

> very similar) I gave him a copy of the CT on-line brochure, and

some info

> that I had about FDA approval of cranial orthotic devices. He did

not seem

> to know anything about FDA regulation.

>

> I'm going to call Cranial Technologies, and ask them what generally

needs to

> happen before an infant is fitted. What do you all think? Do I need

to

From what I understand Cranial Technologies can be very helpful, and

even give you a free consult. That may be one of our next steps.

> insist on seeing a neurosurgeon first? Do I need to insist on

finding out if

> his sutures are still open before proceeding with helmet therapy?

>

Our second opinion Dr felt the sutures were open, but to be sure and

for mine and my husbands own peace of mind he ordered x-rays for us

that day.

take care and god bless you all!

(Gunner's Mommy)

> Thanks for any advice, and sorry such a long post!

> Amy and (3/22/00)