Sooo Frustrated Vent & ? Any one in WNY??

[Guest guest]

,

Hmmm, a double edged sword! Don't you love that your an overreactive mother?!! I would schedule that nuero asap, ask to be on a waiting list if need be, and maybe even check with the office by asking the staff if they deal with plagio babies. That will give you a heads up on what to expect there. I love that you stood your ground, I had to and believe me, if you stay with this ped and get that rx, he will be eating his words!!!! I think you should contact CT and ask for a packet of information to be sent to your Doctor's attention, I think pictures speak volumes, and the literature they have will at least pique his curiosity. I did not switch peds even tho she really felt it wasn't necessary, but to this day, my son is now 2.4 years old, she is commenting that his head looks great and it was the best decision for us. If you feel in your gut as the parent that it warrants a band, don't take no for an answer! If he feels its a marketing ploy, have him look at before and after pictures, and then ask him if he sees any noticeable changes! Your doing great so far, keep up the good work!! Good luck and keep us posted!

'mom

[Guest guest]

I had my husband measure Jordans ear misalignmet last night and it is a

little over 2 inches! We has and appointment with his ped today and was told

once again that all preemies heads are misshappen and it will correct itself

on its own by the time he is 2. I was actually arguing with him about at

least testing for plagio and he kept telling me its not hydrocephaly. He

said plagio is a " newfangled " term that is a marketing stratagy for band &

helmet makers. I then told him that I wasn't leaving the office without

refferals to a neurosurgeon and a physical therapist. He gave me the

referalls but told me that I was being an over-reactive mother and was just

looking for problems. I am so frustrated & diapointed with him. When my

twins were born my old ped was retireing so I need to find a new ped & I got

referals and interviewed peds that were familiar with the need of preemies

and everyone I spoke to said he was wonderful & was up to date with all the

newest research etc. So my question is: Do I stick with this ped since I

at least got the referals from him & see what the neurosurgeon says or do I

start looking for a new ped now that doesn't think I am crazy So any advice

on how to get the best care for Jory as quickly as possible? Is there

anyone in WNY who is getting treatment for their child?

Thanks so much!

~~~~

Mama to:

12-16-00

Jordan & 2-21-03

[Guest guest]

Ugh !

Some of these doctors really make me MAD!! I'm in ENY and I too had a

hard time getting any help. So I went to Cranial Tech in NJ for a

free evaluation. They took pictures of daughter, wrote a little

report and fed ex'd it over night to my pediatrician. As soon as she

saw it she wrote me a script. Maybe your ped will do the same. But

then again he doesn't sound like he's plagio educated at all. Are

there any other peds in your area that specializes w/preemies?

Please keep us posted.

> I had my husband measure Jordans ear misalignmet last night and it

is a

> little over 2 inches! We has and appointment with his ped today and

was told

> once again that all preemies heads are misshappen and it will

correct itself

> on its own by the time he is 2. I was actually arguing with him

about at

> least testing for plagio and he kept telling me its not

hydrocephaly. He

> said plagio is a " newfangled " term that is a marketing stratagy for

band &

> helmet makers. I then told him that I wasn't leaving the office

without

> refferals to a neurosurgeon and a physical therapist. He gave me

the

> referalls but told me that I was being an over-reactive mother and

was just

> looking for problems. I am so frustrated & diapointed with him.

When my

> twins were born my old ped was retireing so I need to find a new

ped & I got

> referals and interviewed peds that were familiar with the need of

preemies

> and everyone I spoke to said he was wonderful & was up to date with

all the

> newest research etc. So my question is: Do I stick with this ped

since I

> at least got the referals from him & see what the neurosurgeon says

or do I

> start looking for a new ped now that doesn't think I am crazy So

any advice

> on how to get the best care for Jory as quickly as possible? Is

there

> anyone in WNY who is getting treatment for their child?

>

> Thanks so much!

> ~~~~

> Mama to:

> 12-16-00

> Jordan & 2-21-03

[Guest guest]

!!

What a dope!!! OMG, that ped sounds like a complete jerk, sorry, but holy cow! Who's he to tell you you're being over protective? Trust me and you can tell him Debbie from your plagio group (LOL, ok probably wouldn't get you far!) knows first hand not all cases of plagio round out on their own!! My Abby graduated w/50-60% correction of her severe plagio nearly 2 yrs ago, she's 3 yrs 3 mosold now & still has remaining flatness. She did not round out on her own post DOCband - I wish she had, but she did not.

At least you stood up for yourself and demanded a referral - GOOD JOB MOM!!! Youre doing the right thing.

I would find a new ped asap, have you scheduled an appt w/the specialist yet? I don't know if you found a new ped now that would interfere w/your referral, but I doubt it.

Sorry your ped is so clueless...unfortunately though, I've heard this story from hundreds of other members...grrr

Debbie Abby's mom DOCGrad

MI <jaredsmom@...> wrote:

I had my husband measure Jordans ear misalignmet last night and it is alittle over 2 inches! We has and appointment with his ped today and was toldonce again that all preemies heads are misshappen and it will correct itselfon its own by the time he is 2. I was actually arguing with him about atleast testing for plagio and he kept telling me its not hydrocephaly. Hesaid plagio is a "newfangled" term that is a marketing stratagy for band & helmet makers. I then told him that I wasn't leaving the office withoutrefferals to a neurosurgeon and a physical therapist. He gave me thereferalls but told me that I was being an over-reactive mother and was justlooking for problems. I am so frustrated & diapointed with him. When mytwins were born my old ped was retireing so I need to find a new ped & I gotreferals and interviewed peds that were familiar with the need of preemiesand everyone I spoke to said he was wonderful & was up to date with all thenewest research etc. So my question is: Do I stick with this ped since Iat least got the referals from him & see what the neurosurgeon says or do Istart looking for a new ped now that doesn't think I am crazy So any adviceon how to get the best care for Jory as quickly as possible? Is thereanyone in WNY who is getting treatment for their child?Thanks so much!~~~~Mama to: 12-16-00Jordan & 2-21-03

[Guest guest]

Hi,

Doctors are very frustrating when they don't listen. The first time

I mentioned a referral to a neurosurgeon my GP looked at me with a

shocked!! (I mean shocked!) look on his face and told me I was

overreacting. Then came the neurosurgeons! two in Ireland, one in

Germany, three in the USA. I was willing to talk to anyone who would

listen. None in Ireland would recommend helmet therapy. So now we're

off to Germany on June 20. We remain determined to help my son

(5 mo) I have changed my GP, by the way. You're not crazy to try

another Ped. You just have to find the right match.

good luck,

denise - from across the pond

> I had my husband measure Jordans ear misalignmet last night and it

is a

> little over 2 inches! We has and appointment with his ped today

and was told

> once again that all preemies heads are misshappen and it will

correct itself

> on its own by the time he is 2. I was actually arguing with him

about at

> least testing for plagio and he kept telling me its not

hydrocephaly. He

> said plagio is a " newfangled " term that is a marketing stratagy

for band &

> helmet makers. I then told him that I wasn't leaving the office

without

> refferals to a neurosurgeon and a physical therapist. He gave me

the

> referalls but told me that I was being an over-reactive mother and

was just

> looking for problems. I am so frustrated & diapointed with him.

When my

> twins were born my old ped was retireing so I need to find a new

ped & I got

> referals and interviewed peds that were familiar with the need of

preemies

> and everyone I spoke to said he was wonderful & was up to date

with all the

> newest research etc. So my question is: Do I stick with this ped

since I

> at least got the referals from him & see what the neurosurgeon

says or do I

> start looking for a new ped now that doesn't think I am crazy So

any advice

> on how to get the best care for Jory as quickly as possible? Is

there

> anyone in WNY who is getting treatment for their child?

>

> Thanks so much!

> ~~~~

> Mama to:

> 12-16-00

> Jordan & 2-21-03

[Guest guest]

, Dustie here! I would suggest taking that referral to the

nuero. See what they say. Specialist are more likely to know more

than just every day run of the mill ass' like it sounds this guy is.

Dustie on her soapbox......I have a preemie and she received DOCBand

therapy at the age of 8.75 months and wore it until she was 11 months

and didn't receive all the correction she could because her sutures

had fused. Her head will not round out anymore and hasn't!!! She is

now a few days shy of 14 months and I could kick myself and others

for not getting her banded earlier than what I did. was dx at

the mere age of 4 months and it took ding dongs, uneducated 4 months

of jacking around for me to finally say enough is enough and took my

daughter to CT and got her banded!! Sorry, but do you really think

it is going to fix itself?

Dustie

> I had my husband measure Jordans ear misalignmet last night and it

is a

> little over 2 inches! We has and appointment with his ped today and

was told

> once again that all preemies heads are misshappen and it will

correct itself

> on its own by the time he is 2. I was actually arguing with him

about at

> least testing for plagio and he kept telling me its not

hydrocephaly. He

> said plagio is a " newfangled " term that is a marketing stratagy for

band &

> helmet makers. I then told him that I wasn't leaving the office

without

> refferals to a neurosurgeon and a physical therapist. He gave me

the

> referalls but told me that I was being an over-reactive mother and

was just

> looking for problems. I am so frustrated & diapointed with him.

When my

> twins were born my old ped was retireing so I need to find a new

ped & I got

> referals and interviewed peds that were familiar with the need of

preemies

> and everyone I spoke to said he was wonderful & was up to date with

all the

> newest research etc. So my question is: Do I stick with this ped

since I

> at least got the referals from him & see what the neurosurgeon says

or do I

> start looking for a new ped now that doesn't think I am crazy So

any advice

> on how to get the best care for Jory as quickly as possible? Is

there

> anyone in WNY who is getting treatment for their child?

>

> Thanks so much!

> ~~~~

> Mama to:

> 12-16-00

> Jordan & 2-21-03

[Guest guest]

Wow - that is awful!!!

I am in a similar position, our GP basically referred me to a neuro

b/c I told her I wasn't leaving until I got it. Unfortunatly where

we are (Vancouver, BC) there are a shortage of GP's, and if you have

one you are considered pretty lucky. Kids here don't go to Ped's

unless they are referred by their GPs...so you can imagine the

reaction to plagio here in BC - doctors don't take it seriously at

all.

It is really disappointing that you were treated in the manner that

you were - imagine if you were a parent that wasn't informed and

actually listened and belived in that twit.

IF you can switch, I would do it. I would switch mine in a

heartbeat if I could.

Good Luck

, mom to Ethan

Vancouver, BC

> I had my husband measure Jordans ear misalignmet last night and it

is a

> little over 2 inches! We has and appointment with his ped today

and was told

> once again that all preemies heads are misshappen and it will

correct itself

> on its own by the time he is 2. I was actually arguing with him

about at

> least testing for plagio and he kept telling me its not

hydrocephaly. He

> said plagio is a " newfangled " term that is a marketing stratagy

for band &

> helmet makers. I then told him that I wasn't leaving the office

without

> refferals to a neurosurgeon and a physical therapist. He gave me

the

> referalls but told me that I was being an over-reactive mother and

was just

> looking for problems. I am so frustrated & diapointed with him.

When my

> twins were born my old ped was retireing so I need to find a new

ped & I got

> referals and interviewed peds that were familiar with the need of

preemies

> and everyone I spoke to said he was wonderful & was up to date

with all the

> newest research etc. So my question is: Do I stick with this ped

since I

> at least got the referals from him & see what the neurosurgeon

says or do I

> start looking for a new ped now that doesn't think I am crazy So

any advice

> on how to get the best care for Jory as quickly as possible? Is

there

> anyone in WNY who is getting treatment for their child?

>

> Thanks so much!

> ~~~~

> Mama to:

> 12-16-00

> Jordan & 2-21-03

[Guest guest]

, I would get rid of him now!! What a jerk. I would actually call and

talk to the head and tell them what you think. I did it and it worked. No

one should have to take anything like that. You are this child's mother,

and you are not over reacting. You are doing the right thing, and you are

asking the right questions. You keep up the good work!! Best wishes,

Heidi, mom to Jeffry, local helmet grad, MN

Hugs & Drool,

Jeffry, Heidi & Brett

Zimmerman

>From: " " <jaredsmom@...>

>Reply-Plagiocephaly

><Plagiocephaly >

>Subject: Sooo Frustrated Vent & ? Any one in WNY??

>Date: Tue, 3 Jun 2003 12:41:20 -0400

>

>I had my husband measure Jordans ear misalignmet last night and it is a

>little over 2 inches! We has and appointment with his ped today and was

>told

>once again that all preemies heads are misshappen and it will correct

>itself

>on its own by the time he is 2. I was actually arguing with him about at

>least testing for plagio and he kept telling me its not hydrocephaly. He

>said plagio is a " newfangled " term that is a marketing stratagy for band &

>helmet makers. I then told him that I wasn't leaving the office without

>refferals to a neurosurgeon and a physical therapist. He gave me the

>referalls but told me that I was being an over-reactive mother and was just

>looking for problems. I am so frustrated & diapointed with him. When my

>twins were born my old ped was retireing so I need to find a new ped & I

>got

>referals and interviewed peds that were familiar with the need of preemies

>and everyone I spoke to said he was wonderful & was up to date with all the

>newest research etc. So my question is: Do I stick with this ped since I

>at least got the referals from him & see what the neurosurgeon says or do I

>start looking for a new ped now that doesn't think I am crazy So any

>advice

>on how to get the best care for Jory as quickly as possible? Is there

>anyone in WNY who is getting treatment for their child?

>

>Thanks so much!

>~~~~

>Mama to:

> 12-16-00

>Jordan & 2-21-03

>

>

>

>For more plagio info

[Guest guest]

Hi ,

I am so sorry that you have been having such trouble with you ped. I

think it is definitely worth a second opinion. You should go with

your instincts, if you feel that something is not right then it

usually isn't. You know your baby better than anybody else. At

least you got the referrals that you asked for. When do you go to

see the neurosurgeon? It can sometimes take a month or more to get

into those guys.

Where in Western NY are you? I am in Rochester. Our son has

completed his treatment. He wore a STARband for 6 months and

received some very nice correction. I was very happy with the

pediatric plastic surgeon that prescribed the band, and especially

happy with the ortho who we saw weekly for 6 months. Unfortunately,

Dr. Losee who is the plastic surgeon we saw, has just announced that

he will be moving out of the area to somewhere in PA. His letter

said that there was a replacement for him who has been trained

similarly, so I hope that the helmet program in Rochester will

continue without a hitch. If you are anywhere near Rochester, I

would HIGHLY recommend the ortho that we saw, Chuck of

Greater Rochester Prosthetics and Orthotics (that is, if a helmet is

the route you want to go once cranio is ruled out). I am no longer

very active on the board, so if you are in the area, or if you have

any questions about the Rochester treatment program, please feel free

to e-mail me privately.

Good luck in your quest to find answers! It will be worth the peace

of mind no matter what you find out!

,

Mom to and (STAR grad 3/21/03)

Rochester, NY

> I had my husband measure Jordans ear misalignmet last night and it

is a

> little over 2 inches! We has and appointment with his ped today and

was told

> once again that all preemies heads are misshappen and it will

correct itself

> on its own by the time he is 2. I was actually arguing with him

about at

> least testing for plagio and he kept telling me its not

hydrocephaly. He

> said plagio is a " newfangled " term that is a marketing stratagy for

band &

> helmet makers. I then told him that I wasn't leaving the office

without

> refferals to a neurosurgeon and a physical therapist. He gave me

the

> referalls but told me that I was being an over-reactive mother and

was just

> looking for problems. I am so frustrated & diapointed with him.

When my

> twins were born my old ped was retireing so I need to find a new

ped & I got

> referals and interviewed peds that were familiar with the need of

preemies

> and everyone I spoke to said he was wonderful & was up to date with

all the

> newest research etc. So my question is: Do I stick with this ped

since I

> at least got the referals from him & see what the neurosurgeon says

or do I

> start looking for a new ped now that doesn't think I am crazy So

any advice

> on how to get the best care for Jory as quickly as possible? Is

there

> anyone in WNY who is getting treatment for their child?

>

> Thanks so much!

> ~~~~

> Mama to:

> 12-16-00

> Jordan & 2-21-03

[Guest guest]

,

I'm not in WNY, but I definitely say get a new pediatrician! I've

found that a pediatrician that values your opinion and respects your

role as a parent is one of the greastest resources! We had a change

in our insurance and had to change pediatricians about a year ago. I

am completely blown away about how wonderful our pediatrician is! He

is relatively young guy, so he is knowledgable on the newest medical

stuff (nice technical term, huh? sorry, not feeling well today!).

Anyway, I have a special needs daughter and he has been such an

advocate for her. She has a condition that often requires her to

have dextrose IV's in the children's hospital about a half hour

away. After he got to know her and her problems, he changed our

procedure and now when her blood sugar crashes he changes one of his

exam rooms into a treatment room and she spends the day there! His

office is 5 minutes from our home, the nurses come in and give me

breaks, and we save so much time with not having to go through the

hospital registration, etc.

Now, he has been great with Lorenzo's plagio! He brought up

Lorenzo's head at his 2-mo. well-child appt. He thought that it was

narrower than it should. He wanted to rule out cranio, so we had x-

rays. They were inconclusive so he ordered at CT scan. (We'll fast

forward here since the post is turning out to be much longer than I

had planned and probably much longer than you wanted to read! lol!)

The plastic surgeons that we saw said that they don't put helmets on

babies with scaphocephaly and that's just how their heads are. They

told me that I was over-reacting, etc. When I told them about the

DOC band they said the same thing... marketing sceme. I was so

upset. I took the DOC band literature to my pediatrician, and he

said go for it! We went up to CT for the consultation, and they said

that the DOC band would be beneficial for Lorenzo. I gave my ped. a

call and he immediately wrote the rx and letter of med. nec.

All this to say, I don't know what we would have done if we didn't

have our ped.'s support! There are bound to be other issues that

will come up with your little ones, and it's so important to know

that your pediatrician is on your side! I say, get rid of him and

start interviewing new ones!!

God Bless,

in KY

Wife to Bert

Mama to Isabelle (5), Carolina (4), (3) and Lorenzo (8 mos.)

> >From: " " <jaredsmom@w...>

> >Reply-Plagiocephaly

> ><Plagiocephaly >

> >Subject: Sooo Frustrated Vent & ? Any one in WNY??

> >Date: Tue, 3 Jun 2003 12:41:20 -0400

> >

> >I had my husband measure Jordans ear misalignmet last night and it

is a

> >little over 2 inches! We has and appointment with his ped today

and was

> >told

> >once again that all preemies heads are misshappen and it will

correct

> >itself

> >on its own by the time he is 2. I was actually arguing with him

about at

> >least testing for plagio and he kept telling me its not

hydrocephaly. He

> >said plagio is a " newfangled " term that is a marketing stratagy

for band &

> >helmet makers. I then told him that I wasn't leaving the office

without

> >refferals to a neurosurgeon and a physical therapist. He gave me

the

> >referalls but told me that I was being an over-reactive mother and

was just

> >looking for problems. I am so frustrated & diapointed with him.

When my

> >twins were born my old ped was retireing so I need to find a new

ped & I

> >got

> >referals and interviewed peds that were familiar with the need of

preemies

> >and everyone I spoke to said he was wonderful & was up to date

with all the

> >newest research etc. So my question is: Do I stick with this ped

since I

> >at least got the referals from him & see what the neurosurgeon

says or do I

> >start looking for a new ped now that doesn't think I am crazy So

any

> >advice

> >on how to get the best care for Jory as quickly as possible? Is

there

> >anyone in WNY who is getting treatment for their child?

> >

> >Thanks so much!

> >~~~~

> >Mama to:

> > 12-16-00

> >Jordan & 2-21-03

> >

> >

> >

> >For more plagio info

[Guest guest]

Hi ,

All I can say is that I am so sorry you had to go through all of

that. I know too well how you are feeling. We chose to switch

peds...after Max got the band we went back one more time and the peds

attitude was disheartening. His negativity toward the band was just

awful. I left in tears. Not because I was sad but because I was so

angry I didn't know where to go with it. I strongly suggest you find

a plagio friendly ped. Even though he gave you the referrals his

mind is made up and he probably won't be too terribly supportive of

your decision to band. There really are great plagio friendly peds

out there.

You are not an over-reactive mother. You love your child and want

only what is best for him. My son, Max, has been banded for 2.5

months now and it is the best decision my husband and I could have

ever made. This is a wonderful, supportive group. Keep us posted on

Jordan's progress. All the very best to you and your little one.

Kathleen and Max (DOCband 3/20)

-- In Plagiocephaly , " " <jaredsmom@w...> wrote:

> I had my husband measure Jordans ear misalignmet last night and it

is a

> little over 2 inches! We has and appointment with his ped today and

was told

> once again that all preemies heads are misshappen and it will

correct itself

> on its own by the time he is 2. I was actually arguing with him

about at

> least testing for plagio and he kept telling me its not

hydrocephaly. He

> said plagio is a " newfangled " term that is a marketing stratagy for

band &

> helmet makers. I then told him that I wasn't leaving the office

without

> refferals to a neurosurgeon and a physical therapist. He gave me

the

> referalls but told me that I was being an over-reactive mother and

was just

> looking for problems. I am so frustrated & diapointed with him.

When my

> twins were born my old ped was retireing so I need to find a new

ped & I got

> referals and interviewed peds that were familiar with the need of

preemies

> and everyone I spoke to said he was wonderful & was up to date with

all the

> newest research etc. So my question is: Do I stick with this ped

since I

> at least got the referals from him & see what the neurosurgeon says

or do I

> start looking for a new ped now that doesn't think I am crazy So

any advice

> on how to get the best care for Jory as quickly as possible? Is

there

> anyone in WNY who is getting treatment for their child?

>

> Thanks so much!

> ~~~~

> Mama to:

> 12-16-00

> Jordan & 2-21-03

[Guest guest]

hi karen: i just wanted to say that a mom at my breastfeeding group the other day said that her older son had plagio. the dr told her it would round out, and now at age 2 1/2 she said his head is still shaped like a parallelogram. so, no, you are not overreacting. you need to go with your gut feeling. i would get to the specialist, as well as dumping that jerk of a doctor!!

kim

mom to kurt (starbanded 5/8/03) <jaredsmom@...> wrote:

I had my husband measure Jordans ear misalignmet last night and it is alittle over 2 inches! We has and appointment with his ped today and was toldonce again that all preemies heads are misshappen and it will correct itselfon its own by the time he is 2. I was actually arguing with him about atleast testing for plagio and he kept telling me its not hydrocephaly. Hesaid plagio is a "newfangled" term that is a marketing stratagy for band & helmet makers. I then told him that I wasn't leaving the office withoutrefferals to a neurosurgeon and a physical therapist. He gave me thereferalls but told me that I was being an over-reactive mother and was justlooking for problems. I am so frustrated & diapointed with him. When mytwins were born my old ped was retireing so I need to find a new ped & I gotreferals and interviewed peds that were familiar with the need of preemiesand everyone I spoke to said he was wonderful & was up to date with all thenewest research etc. So my question is: Do I stick with this ped since Iat least got the referals from him & see what the neurosurgeon says or do Istart looking for a new ped now that doesn't think I am crazy So any adviceon how to get the best care for Jory as quickly as possible? Is thereanyone in WNY who is getting treatment for their child?Thanks so much!~~~~Mama to: 12-16-00Jordan & 2-21-03For more plagio info