Re: update on my doc appt. and some questions, if you don't mind.....

[Guest guest]

We were also sent to have a CT scan for my daughter before seeing any CF specialist or orthotist. I believe she was about 2 months old at the time. I was told it was to make sure she didn't have craniocystosis (premature fusing of the skull bones). She was not anesthetized, I just nursed her til she fell asleep, and then they did the scan which, once she was asleep and still, took only about 2 minutes.

Hope this helps

Leah

From: deanaimee <deanaimee@...>Subject: update on my doc appt. and some questions, if you don't mind.....Plagiocephaly Date: Wednesday, February 23, 2011, 3:00 PM

Hello all,My daughter was 4 mos old on 2/21. A couple weeks ago we started noticing her head shape was a bit off. I posted a pic on here, her name is Lainey.Today we had her 4 month appt and I showed the pediatrician, who agreed that she should see the specialist. She said it looked pretty mild (she's a ped, so I take that with a grain of salt). I was happy, tho, that she validated my concerns and realized that it's much more than a cosmetic issue.She told me that the specialist required a CT scan before he would see me. Makes no sense to me. I would really like to meet with the specialist first to make sure we even want to move forward with any treatment. I went ahead and made an appt with Hanger to have a free evaluation on Friday. Turns out, this Hanger facility works closely with this specialist. So, we'll see how that appt turns out. Did any of you have a similar experience? Seems like a ct scan shouldn't just be done before

seeing the specialist.Ugh. Any thoughts?Thanks, Aimee

[Guest guest]

Thank you, Leah. Yes, very helpful! How is your sweet baby now?

>

>

> From: deanaimee <deanaimee@...>

> Subject: update on my doc appt. and some questions, if you don't

mind.....

> Plagiocephaly

> Date: Wednesday, February 23, 2011, 3:00 PM

>

>

>  

>

>

>

> Hello all,

> My daughter was 4 mos old on 2/21. A couple weeks ago we started noticing her

head shape was a bit off. I posted a pic on here, her name is Lainey.

> Today we had her 4 month appt and I showed the pediatrician, who agreed that

she should see the specialist. She said it looked pretty mild (she's a ped, so I

take that with a grain of salt). I was happy, tho, that she validated my

concerns and realized that it's much more than a cosmetic issue.

> She told me that the specialist required a CT scan before he would see me.

Makes no sense to me. I would really like to meet with the specialist first to

make sure we even want to move forward with any treatment. I went ahead and made

an appt with Hanger to have a free evaluation on Friday. Turns out, this Hanger

facility works closely with this specialist. So, we'll see how that appt turns

out.

> Did any of you have a similar experience? Seems like a ct scan shouldn't just

be done before seeing the specialist.

> Ugh.

> Any thoughts?

> Thanks,

> Aimee

>

[Guest guest]

The CT scan is only to make sure the skull hasn't fused prematurely. We skipped the CT scan and went straight to a neurologist ($40 copayment vs a lot more for a CT). He took one look at our son and said it was a classic plagiocephaly case and there was no need for a scan. . Maybe you'll have the same luck!! On Feb 23, 2011, at 6:00 PM, "deanaimee" <deanaimee@...> wrote:

Hello all,

My daughter was 4 mos old on 2/21. A couple weeks ago we started noticing her head shape was a bit off. I posted a pic on here, her name is Lainey.

Today we had her 4 month appt and I showed the pediatrician, who agreed that she should see the specialist. She said it looked pretty mild (she's a ped, so I take that with a grain of salt). I was happy, tho, that she validated my concerns and realized that it's much more than a cosmetic issue.

She told me that the specialist required a CT scan before he would see me. Makes no sense to me. I would really like to meet with the specialist first to make sure we even want to move forward with any treatment. I went ahead and made an appt with Hanger to have a free evaluation on Friday. Turns out, this Hanger facility works closely with this specialist. So, we'll see how that appt turns out.

Did any of you have a similar experience? Seems like a ct scan shouldn't just be done before seeing the specialist.

Ugh.

Any thoughts?

Thanks,

Aimee

[Guest guest]

Our ped ordered a ct scan for our 3 month old son. The ct was to rule out craniosynostosis, which is rare, but very serious. I'm glad we did it bc I would worry. My son is now 4.25 months and we got our doc band monday. We never saw a specialist. We talked about it, but it took too long to get into one and we had already decided to band him and we didn't think a specialist would change our decision. Good luck!Sent from my Verizon Wireless BlackBerryFrom: "deanaimee" <deanaimee@...>Sender: Plagiocephaly Date: Wed, 23 Feb 2011 23:00:08 -0000<Plagiocephaly >Reply Plagiocephaly Subject: update on my doc appt. and some questions, if you don't mind..... Hello all,My daughter was 4 mos old on 2/21. A couple weeks ago we started noticing her head shape was a bit off. I posted a pic on here, her name is Lainey.Today we had her 4 month appt and I showed the pediatrician, who agreed that she should see the specialist. She said it looked pretty mild (she's a ped, so I take that with a grain of salt). I was happy, tho, that she validated my concerns and realized that it's much more than a cosmetic issue.She told me that the specialist required a CT scan before he would see me. Makes no sense to me. I would really like to meet with the specialist first to make sure we even want to move forward with any treatment. I went ahead and made an appt with Hanger to have a free evaluation on Friday. Turns out, this Hanger facility works closely with this specialist. So, we'll see how that appt turns out. Did any of you have a similar experience? Seems like a ct scan shouldn't just be done before seeing the specialist.Ugh. Any thoughts?Thanks, Aimee

[Guest guest]

Hello Aimee,I think it's ridiculous that the specialist requires a CT scan. Any competent specialist can tell from a physical exam whether there is premature fusing of the bones. paralellogram= plagio /trapezoid= craniocystosis. CT scans involve much more radiation than an x-ray. In fact, if your baby falls and hits it's head, an ER doctor will only order one if he is certain there is a serious head injury involved. I'd look for a different specialist. Our neurosurgeon took one look at my daughter's head and know instantly there was no premature bone fusing involved. I'd look for a specialist who didn't require a CT scan. Why expose that developing little brain to radiation when it isn't necessary? Good luck!-AmyFrom: Leah Borski <ldborski@...>Plagiocephaly Sent: Wed, February 23, 2011 6:59:39 PMSubject: Re: update on my doc appt. and some questions, if you don't mind.....

We were also sent to have a CT scan for my daughter before seeing any CF specialist or orthotist. I believe she was about 2 months old at the time. I was told it was to make sure she didn't have craniocystosis (premature fusing of the skull bones). She was not anesthetized, I just nursed her til she fell asleep, and then they did the scan which, once she was asleep and still, took only about 2 minutes.

Hope this helps

Leah

From: deanaimee <deanaimee@...>Subject: update on my doc appt. and some questions, if you don't mind.....Plagiocephaly Date: Wednesday, February 23, 2011, 3:00 PM

Hello all,My daughter was 4 mos old on 2/21. A couple weeks ago we started noticing her head shape was a bit off. I posted a pic on here, her name is Lainey.Today we had her 4 month appt and I showed the pediatrician, who agreed that she should see the specialist. She said it looked pretty mild (she's a ped, so I take that with a grain of salt). I was happy, tho, that she validated my concerns and realized that it's much more than a cosmetic issue.She told me that the specialist required a CT scan before he would see me. Makes no sense to me. I would really like to meet with the specialist first to make sure we even want to move forward with any treatment. I went ahead and made an appt with Hanger to have a free evaluation on Friday. Turns out, this Hanger facility works closely with this specialist. So, we'll see how that appt turns out. Did any of you have a similar experience? Seems like a ct scan shouldn't just be done before

seeing the specialist.Ugh. Any thoughts?Thanks, Aimee

[Guest guest]

we did not have a CT, but we did have to have an X-ray series to rule out premature bone fusion and bone abnomalities due to her also having Tort.

update on my doc appt. and some questions, if you don't mind.....Plagiocephaly Date: Wednesday, February 23, 2011, 3:00 PM

Hello all,My daughter was 4 mos old on 2/21. A couple weeks ago we started noticing her head shape was a bit off. I posted a pic on here, her name is Lainey.Today we had her 4 month appt and I showed the pediatrician, who agreed that she should see the specialist. She said it looked pretty mild (she's a ped, so I take that with a grain of salt). I was happy, tho, that she validated my concerns and realized that it's much more than a cosmetic issue.She told me that the specialist required a CT scan before he would see me. Makes no sense to me. I would really like to meet with the specialist first to make sure we even want to move forward with any treatment. I went ahead and made an appt with Hanger to have a free evaluation on Friday. Turns out, this Hanger facility works closely with this specialist. So, we'll see how that appt turns out. Did any of you have a similar experience? Seems like a ct scan shouldn't just be done before seeing the specialist.Ugh. Any thoughts?Thanks, Aimee

[Guest guest]

She's great. Just turned 9 months old and been in a Hanger band for about 3 weeks now. It doesn't phase her a bit, and she's starting to show some improvement already. She started off with a moderate case with torticollis, as well. We did physical therapy with her for 4 months, and that is completely resolved. We also tried repositioning, but it is hard without being able to put anything in the crib to keep her in position, and we just didn't feel safe about doing that.

My best advice is to listen to your heart in deciding whether to band or not. Whether it is just cosmetic or not, your child (and you) will have to live with whatever you decide, and you have to know in your heart that your decision is in the best interest of your baby, regardless of what your doctor's or anyone else's opinion is about it.

Best of luck and keep us posted

Leah

From: deanaimee <deanaimee@...>Subject: Re: update on my doc appt. and some questions, if you don't mind.....Plagiocephaly Date: Wednesday, February 23, 2011, 4:34 PM

Thank you, Leah. Yes, very helpful! How is your sweet baby now?> > > From: deanaimee

<deanaimee@...>> Subject: update on my doc appt. and some questions, if you don't mind.....> Plagiocephaly > Date: Wednesday, February 23, 2011, 3:00 PM> > > Â > > > > Hello all,> My daughter was 4 mos old on 2/21. A couple weeks ago we started noticing her head shape was a bit off. I posted a pic on here, her name is Lainey.> Today we had her 4 month appt and I showed the pediatrician, who agreed that she should see the specialist. She said it looked pretty mild (she's a ped, so I take that with a grain of salt). I was happy, tho, that she validated my concerns and realized that it's much more than a cosmetic issue.> She told me that the specialist required a

CT scan before he would see me. Makes no sense to me. I would really like to meet with the specialist first to make sure we even want to move forward with any treatment. I went ahead and made an appt with Hanger to have a free evaluation on Friday. Turns out, this Hanger facility works closely with this specialist. So, we'll see how that appt turns out. > Did any of you have a similar experience? Seems like a ct scan shouldn't just be done before seeing the specialist.> Ugh. > Any thoughts?> Thanks, > Aimee>