Re: Should I look for a new doctor? (m)

[Guest guest]

Judy,

It sounds like your doctor is at least responsive and receptive to using a

band for treatment. I know of many people here who are using a device despite

the fact that their ped thinks it is totally unnecessary. So, your ped sounds

like he is not too bad and is at least willing to help you. Unless you feel

uncomfortable with him or do not like some of the other things he/she has

done I would not necessarily switch because of this.

As far as the tort goes and your concerns about developmental delays - you

might look into EI (early intervention) and see if you qualify. Hopefully

Jaya Dong will respond to you - she has the links where you can check if your

state offers this program. Otherwise I would push the ped and see if he/she

will refer you for some PT.

It sounds like you are a GREAT advocate for your child. Just keep pushing

whoever you need to in order to get answers AND results. If you don't feel

like you are getting an adequate response - demand more! Lately I have

noticed that the doctors in my area think they are doing us a big favor by

being our doctor when it should be the other way around! They wouldn't have a

practice without patients and they are getting paid big bucks! They should

satisfy you as a paying customer and if they don't then you have a right to

demand better service. Sorry about the soapbox moment, but lately this

attitude from the healtcare profession has been making me crazy!!

OK, it boils down to this - go with your instincts. If this ped give you the

" willies " then shop around. Otherwise keep with him/her, but ask questions

and voice concerns as often as you have to in order to get results you feel

comfortable with!

Marci (Mom to )

Oklahoma

(I just looked back through this post and I'm sorry it is so long!!)

[Guest guest]

Judy,

Here is the site Marci was referring to (I think:

http://www.nichy.org/states.htm

I think that Early Intervention is a federally mandated program that

is available in every state, but does vary from state-to-state by

name. Some states it is called Birth-to-Three; I think In OK it is

called Sooner Start.... The link should help you find a contact in

your state to get you started.

Hope this helps!

Tami

9/99

7/97

Tulsa, OK

E

> Judy,

>

> It sounds like your doctor is at least responsive and receptive to

using a

> band for treatment. I know of many people here who are using a

device despite

> the fact that their ped thinks it is totally unnecessary. So, your

ped sounds

> like he is not too bad and is at least willing to help you. Unless

you feel

> uncomfortable with him or do not like some of the other things

he/she has

> done I would not necessarily switch because of this.

>

> As far as the tort goes and your concerns about developmental

delays - you

> might look into EI (early intervention) and see if you qualify.

Hopefully

> Jaya Dong will respond to you - she has the links where you can

check if your

> state offers this program. Otherwise I would push the ped and see

if he/she

> will refer you for some PT.

>

> It sounds like you are a GREAT advocate for your child. Just keep

pushing

> whoever you need to in order to get answers AND results. If you

don't feel

> like you are getting an adequate response - demand more! Lately I

have

> noticed that the doctors in my area think they are doing us a big

favor by

> being our doctor when it should be the other way around! They

wouldn't have a

> practice without patients and they are getting paid big bucks! They

should

> satisfy you as a paying customer and if they don't then you have a

right to

> demand better service. Sorry about the soapbox moment, but lately

this

> attitude from the healtcare profession has been making me crazy!!

>

> OK, it boils down to this - go with your instincts. If this ped

give you the

> " willies " then shop around. Otherwise keep with him/her, but ask

questions

> and voice concerns as often as you have to in order to get results

you feel

> comfortable with!

>

> Marci (Mom to )

> Oklahoma

> (I just looked back through this post and I'm sorry it is so long!!)

[Guest guest]

Judy - I think your doctor at least noticed the tight neck and plagio at that is a major accomplishment in itself it seems!! 8 months is still good timing, though 6 would have been better. Many of us have started much later and gotten good results. Many have worse stories to tell or would even appreciate a doctor recommending any correction rather than the same old "it will round out." I would ask for a referral for a pt evaluation for the neck and get professional pt going. Will only help along the plagio and you'll be amazed how that pt person can help you make sure Genna stays on track! You can help educate him along the way with the torticollis and help him spot and correct it earlier with someone else. I know my family practice doctor has learned about tort from me and has asked questions. He has been so happy with 's head and treatment so I only hope that helps some other little baby along the way!

Tammy & 12/8/99

[Guest guest]

I'd say if you are uncomfortable with this doctor, then switch. Instinct is a powerful thing. However, I don't think you should blame your doctor for his sub's mistake. After all, they can't read each other's minds.

I would push for a PT consult. Do you need a referral to see a PT? If not, maybe go for the consult, and if a referral will help with insurance paying (sorry, I'm in Canada and it's all different here! ), ask the PT to write a note to your doctor telling him why PT is needed. Call around to find a PT who specializes in infants and torticollis.

Also, consider an Early Intervention evaluation. They will come to your home (or daycare) for the sessions, and will be low cost or free, depending on your financial situation.

Again, go with your gut. Mommies know best! )

Good luck!

Kendra in CanadaFor more plagio info, visitwww.plagiocephaly.org/support...

----- Original Message -----

From: mom2genna2000@...

Plagiocephaly

Sent: Thursday, March 08, 2001 12:53 PM

Subject: Should I look for a new doctor? (m)

I'm not sure whether I should consider switching doctors, or whether we actually got decent care and I am expecting too much. I'll relay what happened (sorry if this gets long) and I'd appreciate hearing what you all think.Our ped first noticed Genna's flat spot and preference for turning her head to the left side around 3 or 4 months. All he told us to do was try to encourage her to look the other way by placing her in the crib the opposite way, turning her bouncy seat in different directions, etc. He never formally diagnosed her with torticollis, just said she had a preference and her neck was a little tight.So we did what he said. We saw a substitute doc at her 6 mo. appointment because her doc was out of town. He noted the flat spot and just told us to continue what we were doing. I took her in again at around 8 months because her head was still flat and I was afraid we were running out of time. Her regular doc saw her this time and said she seemed to be doing better as far as looking in both directions but that her head was still somewhat flat and her ears were a little asymmetrical. He said we should take her to the neurosurgeon to find out about a DOC band. He basically said if he had seen her at 6 months instead of his colleague, he would have sent her then, so we wasted 2 months.So we have started the process, seen the neurosurgeon, done the casting, etc. and we are waiting for the band to come in on Tuesday. I am annoyed at this point because I think they should have referred us LONG ago and if I hadn't taken her in and pushed it who knows where we would be. And I am worried that she needs PT or something that she is not getting. She sits up well and stands with support. She can roll but doesn't do it very much and only started rolling onto her tummy within the last couple of weeks (she is over 9 months old). She doesn't like being on her tummy much and has poor neck strength. She shows no signs of crawling and doesn't pull up. At her 9 mo. appointment she asked if she was crawling and I said no, and he said some babies never crawl. OK, fine. He asked if she had any method of moving around, such as scooting. I said no, she pretty much stays put where you place her, even if a toy is just out of reach. She will sit or lay there and cry until I help her, rather than try to move on her own. He just said, Hmmm, most babies have some way of getting around even if they don't crawl. Then he asked if she was using her hands OK, and I said yes, she seems to, and he basically said not to worry about it and she's fine.Well, I see and hear about other babies every day and I am not so sure she's fine. I am not convinced her "tight neck" isn't affecting her motor development, keeping her from crawling, pulling up, etc. I don't think it's a HUGE problem but it seems like some PT might be in order. We do some basic neck stretching exercises from CT but I wonder if maybe she needs more, since she seems to be behind other babies in these areas. But then, she has been seen by her ped about this stuff and by a pediatric neurosurgeon and nobody has suggested that she needs anything more than what she's getting. So maybe I am just being overly protective. As I said, I am annoyed and a little wary after they dropped the ball on the band referral. And sometimes I wonder if some exercises months ago might have fixed this whole problem without a band.What do others think? Should I shop around for a new doctor? I honestly don't know if a new doctor would be any better or if they are doing all they can for her now. Maybe I just need to get the band and relax and go with the flow. ??Thanks in advance.Judy

[Guest guest]

Thanks Tami!! Judy - I hope this helps.

Marci