Re: I am mess :O

[Guest guest]

My personal opinion is to go with your own instinct. I know of alot of peds who dismiss all of these issues including my own but if there exists a therapy to fix it I say why not if it can only benefit your child. 3/11 is almost 3 weeks away so if you can hold on it might be a good idea. Children's told me that they typically take babies at 4-6 months and actually closer to 6 so you have a ways to go. I would also think that getting this earlier will definitely bother the baby less, IF at all, and will take shorter because the skull is growing more raplidly and will taper closer to a year. Hang in there!

Ana- On Thu, Feb 19, 2009 at 5:37 PM, alybri8173 <alybri8173@...> wrote:

Hi Everyone!

I have written once before, and am new to the group. I just kind of

need some mommy opinions!! Please help!! So... my son Blake will be 5

months old tomorrow. He was diagnosed with tort and plagiocephaly the

beginning of this month, after I finally had had it withh our

Pediatrician. We expressed our concerns about the difference in his

ears twice, and no reaction at all. So..I did reasearch on my own,

and called my daughters (she was born with a bilateral cleft lip)

craniofacial team, who fit us in right away with the nurse

practitioner, and that was when he was diagnosed. He is a mild cased,

but does have ear assymetry. We have been doing PT for a few weeks

now, and I was doing it at home before we started going to the doctor

for it, I knew it was not normal that my baby only looked and turned

to one side. Now, I am a nurse, but you do not need to be a nurse to

know that was not right. I need help b/c I am leaning towards doing

the band. We had an eval done at CT and he was a candidate, even

though he is a mild case. I am afraid I guess, b/c all doctors have

different opinions. Should I go with my gut and do it now while he is

little, and potentially could be in it for a shorter time? Should I

wait to see the entire craniofacial team on 3/11? (i feel like it is

a year away, and fell I can not wait anymore!!) help!

Thank you!!

Alyson

[Guest guest]

Dear Alyson,

It sounds like it was good that you were persistent! I don't know why some peds

seem so unconcerned about things like plagio. But like you said, you have to go

with your gut! If you feel that your son will benefit from a band, I would do it

now instead of wasting 3 weeks. From my experience and what I have read- the

ears are the last thing to usually correct, the plagio corrects much faster.

But at 5 months of age, your son will be growing quickly and be out of the band

before you know it!!

I also agonized over the decision, but once it was made it was pretty smooth

sailing for us. My daughter got her band at just over 6.5 months of age wore it

almost 3 months (could have been out of the band almost a month earlier, but

wanted to get the most correction possible). We finished with her plagio going

from 14mm to under 2 and her ears are now less than 1mm apart.

Good Luck with you decision and your journey!

Mom to McKenna- band grad 1/09

> From: alybri8173 <alybri8173@...>

> Subject: I am mess

> Plagiocephaly

> Date: Thursday, February 19, 2009, 10:37 PM

> Hi Everyone!

> I have written once before, and am new to the group. I

> just kind of

> need some mommy opinions!! Please help!! So... my son Blake

> will be 5

> months old tomorrow. He was diagnosed with tort and

> plagiocephaly the

> beginning of this month, after I finally had had it withh

> our

> Pediatrician. We expressed our concerns about the

> difference in his

> ears twice, and no reaction at all. So..I did reasearch on

> my own,

> and called my daughters (she was born with a bilateral

> cleft lip)

> craniofacial team, who fit us in right away with the nurse

> practitioner, and that was when he was diagnosed. He is a

> mild cased,

> but does have ear assymetry. We have been doing PT for a

> few weeks

> now, and I was doing it at home before we started going to

> the doctor

> for it, I knew it was not normal that my baby only looked

> and turned

> to one side. Now, I am a nurse, but you do not need to be a

> nurse to

> know that was not right. I need help b/c I am leaning

> towards doing

> the band. We had an eval done at CT and he was a candidate,

> even

> though he is a mild case. I am afraid I guess, b/c all

> doctors have

> different opinions. Should I go with my gut and do it now

> while he is

> little, and potentially could be in it for a shorter time?

> Should I

> wait to see the entire craniofacial team on 3/11? (i feel

> like it is

> a year away, and fell I can not wait anymore!!) help!

>

> Thank you!!

> Alyson

[Guest guest]

Hi Alyson,

I would go with you gut and get the molding helmet as soon as possible. Time is of the essense. My son was fitted for a helmet at 5 months for bracephaly and it is slowly getting better.

Best,

From: alybri8173 <alybri8173@...>Subject: I am mess Plagiocephaly Date: Thursday, February 19, 2009, 5:37 PM

Hi Everyone!I have written once before, and am new to the group. I just kind of need some mommy opinions!! Please help!! So... my son Blake will be 5 months old tomorrow. He was diagnosed with tort and plagiocephaly the beginning of this month, after I finally had had it withh our Pediatrician. We expressed our concerns about the difference in his ears twice, and no reaction at all. So..I did reasearch on my own, and called my daughters (she was born with a bilateral cleft lip) craniofacial team, who fit us in right away with the nurse practitioner, and that was when he was diagnosed. He is a mild cased, but does have ear assymetry. We have been doing PT for a few weeks now, and I was doing it at home before we started going to the doctor for it, I knew it was not normal that my baby only looked and turned to one side. Now, I am a nurse, but you do not need to be a nurse to know that was not

right. I need help b/c I am leaning towards doing the band. We had an eval done at CT and he was a candidate, even though he is a mild case. I am afraid I guess, b/c all doctors have different opinions. Should I go with my gut and do it now while he is little, and potentially could be in it for a shorter time? Should I wait to see the entire craniofacial team on 3/11? (i feel like it is a year away, and fell I can not wait anymore!!) help! Thank you!!Alyson

[Guest guest]

Alyson,

While some pediatrician are knowledgeable and pro-band, many others are not. Back when my daughter was 5 months we had seen about 5 pediatricians who all said that she was didn't need a helmet. I ended up taking to CT, Orthomerica and two other places for measurements and all told me that she was a severe case of brachy and a moderate/mild case of plagio.

Your son is 5 months old. If he gets in a DOC band now, he'll be out of it in no time you should see good improvement if not complete correction as far as his plagio and ear asymmetry are concerned.

Get a prescription (even if you have to go out of network - that's what I had to do) and get your son banded. You cannot go wrong with Cranial Technologies.

Good luck,

Leila

Maysa, 13 months old, week 2 in DOC band 2

http://mymaysa.wordpress.com/--- On Thu, 2/19/09, alybri8173 <alybri8173@...> wrote:

From: alybri8173 <alybri8173@...>Subject: I am mess Plagiocephaly Date: Thursday, February 19, 2009, 5:37 PM

Hi Everyone!I have written once before, and am new to the group. I just kind of need some mommy opinions!! Please help!! So... my son Blake will be 5 months old tomorrow. He was diagnosed with tort and plagiocephaly the beginning of this month, after I finally had had it withh our Pediatrician. We expressed our concerns about the difference in his ears twice, and no reaction at all. So..I did reasearch on my own, and called my daughters (she was born with a bilateral cleft lip) craniofacial team, who fit us in right away with the nurse practitioner, and that was when he was diagnosed. He is a mild cased, but does have ear assymetry. We have been doing PT for a few weeks now, and I was doing it at home before we started going to the doctor for it, I knew it was not normal that my baby only looked and turned to one side. Now, I am a nurse, but you do not need to be a nurse to know that was not

right. I need help b/c I am leaning towards doing the band. We had an eval done at CT and he was a candidate, even though he is a mild case. I am afraid I guess, b/c all doctors have different opinions. Should I go with my gut and do it now while he is little, and potentially could be in it for a shorter time? Should I wait to see the entire craniofacial team on 3/11? (i feel like it is a year away, and fell I can not wait anymore!!) help! Thank you!!Alyson

[Guest guest]

What would be the benefit of seeing the craniofacial team? I'm asking because I don't know.

In my case, I needed a prescription and my pediatrician didn't know enough about it to know how to deal with this. She just said that she refers it to the specialist. So, I didn't know that I had a choice. I could have started the process with Star Cranial and then had the prescription faxed once we saw the specialist.

If there is no real reason to wait, then don't. That's just my opinion. If there's some benefit to waiting, then you'll have to weigh that benefit to decide.

, mom to 17 months 3 weeks

13.5 weeks in STARband plus CST

land

I am mess

Hi Everyone!I have written once before, and am new to the group. I just kind of need some mommy opinions!! Please help!! So... my son Blake will be 5 months old tomorrow. He was diagnosed with tort and plagiocephaly the beginning of this month, after I finally had had it withh our Pediatrician. We expressed our concerns about the difference in his ears twice, and no reaction at all. So..I did reasearch on my own, and called my daughters (she was born with a bilateral cleft lip) craniofacial team, who fit us in right away with the nurse practitioner, and that was when he was diagnosed. He is a mild cased, but does have ear assymetry. We have been doing PT for a few weeks now, and I was doing it at home before we started going to the doctor for it, I knew it was not normal that my baby only looked and turned to one side. Now, I am a nurse, but you do not need to be a nurse to know that was not right. I need help b/c I am leaning towards doing the band. We had an eval done at CT and he was a candidate, even though he is a mild case. I am afraid I guess, b/c all doctors have different opinions. Should I go with my gut and do it now while he is little, and potentially could be in it for a shorter time? Should I wait to see the entire craniofacial team on 3/11? (i feel like it is a year away, and fell I can not wait anymore!!) help! Thank you!!Alyson

[Guest guest]

Alyson,

I agree go with your first instinct. My daughter was diagnosed

with tort and brachi at 5 months. A physical therapist gave us were

simple exercises we could do with her at home and just by doing those

alone, she has improved. She just got her Starband helmet yesterday

so that should help improve things even more. You don't want to regret

not doing something now when she's young.

Steve

[Guest guest]

Unless you feel the craniofacial team will change your mind, I think you should just move forward. If they disagree with your decision, oh well, you are the one who has to live with it.

Let me share my craniofacial experience with you. When my son was seen at 6 months the Dr. gave me a 50/50 opinion to band or not. Well that put my husband on the fence and we wasted a lot of time debating.

Our Helmet story between then and now is a long one but I will tell you that when my son had a craniofacial follow up at 12 months, the same Doc walked into the room and said, "Oh yeah, I can still see the prominence on the back left side and that one eye is still a bit smaller.".

This was the same Dr that said 50/50. Needless to say, that really burned me.

So, long story longer than it needed to be....You don't need a professional to tell you what you already know. Just go for it.

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