Re: Pediatrician and Neuro surgeon are not ready to give prescription for Helmet

[Guest guest]

I would change doctors completely. Contact Cranial Technologies and

they can give you a list of their support doctors in your area so you

have a doctor who is knowledgeable and will write a prescription. The

sooner the better since they adjust to the cap better at an earlier

age. Time is very important and you can not wait for the two doctors to

grant their approval. They are not God, humans who have their varying

positions. I changed my doctor because he wasn't as observant as I

would like and thank God I did. Good luck.

[Guest guest]

I find doctors to be so frustrating at times!

I would find another neurosurgeon!

Also, if torticollis has not been ruled out, that

should be checked, from the research I have done.

>

> Hi

>

> My 6 1/2 month son has very bad flat head on his back and also has

> some flatness on his right side. We noticed it when he was 2 months

> old. Our pediatrician asked me to do aggressive repositioning . At

> that time, I was completely ignorant of this flat head problem and

> could not do aggressive repositioning. But I made sure he was not on

> his back in the day time. My baby started sleeping through the

nights

> from his second month itself and this increased his flat head a lot.

> At his 4th month check up, the pediatrician referred him to a neuro

> surgeon. The neuro surgeon asked us to reposition the baby's head

and

> see if it changes anything . We have been repositioning him at night

> times too. I have been making him sleep on his left side .

>

> Now he is 61/2 months old and we don't see any significant change in

> his head shape. He has severe flat head on the back and some

flatness

> on the right. So we asked the neuro surgeon to give prescription

for a

> helmet hoping that we will get our baby start on helmet ASAP and he

> would have a nice round head in 3-4 months. To our surprise, the

neuro

> surgeon is not ready to put the baby on helmet. Moreover he says by

> the time the baby goes to school, the flat head would be

unnoticeable.

> We are not convinced with it because he has severe flat head. So I

> contacted my pediatrician hoping she will understand and give

> prescription for helmet. But she said she would not do that and

asked

> me to contact the neuro surgeon again to see he if he will agree

this

> time. This is so frustrating .

>

> I don't have any family here for support . I am really frustrated

and

> depressed. I want to do what ever I can do for my baby to help with

> his flat head. Has any of you guys ever had such a situation? Any

> advise would be very helpful.

>

> Thanks

>

[Guest guest]

Wow, definately get a new neurosurgeon. Has a CT Scan been done

yet? I have to say that your story sounds very familiar to mine.

had the same issue with the flattening of the head and we had

a physiotherapist do repositioning with him 2 times a week. After

several months, the flattening continued and he was referred to a

neurosurgeon at sick kids where they did a CT scan. It turned out

that his plates had fused prematurely and that a helmet would not

work to correct the problem. In July, underwent craniofacial

surgery to open up the plates, and his head looks awesome. Each case

is different, but I think your first step is to get a second opinion

from another neurosurgeon. Good luck, and if you need support I

would be more than happy to share my experiences with you no matter

how different they may be.

> >

> > Hi

> >

> > My 6 1/2 month son has very bad flat head on his back and also has

> > some flatness on his right side. We noticed it when he was 2

months

> > old. Our pediatrician asked me to do aggressive repositioning . At

> > that time, I was completely ignorant of this flat head problem

and

> > could not do aggressive repositioning. But I made sure he was not

on

> > his back in the day time. My baby started sleeping through the

> nights

> > from his second month itself and this increased his flat head a

lot.

> > At his 4th month check up, the pediatrician referred him to a

neuro

> > surgeon. The neuro surgeon asked us to reposition the baby's head

> and

> > see if it changes anything . We have been repositioning him at

night

> > times too. I have been making him sleep on his left side .

> >

> > Now he is 61/2 months old and we don't see any significant change

in

> > his head shape. He has severe flat head on the back and some

> flatness

> > on the right. So we asked the neuro surgeon to give prescription

> for a

> > helmet hoping that we will get our baby start on helmet ASAP and

he

> > would have a nice round head in 3-4 months. To our surprise, the

> neuro

> > surgeon is not ready to put the baby on helmet. Moreover he says

by

> > the time the baby goes to school, the flat head would be

> unnoticeable.

> > We are not convinced with it because he has severe flat head. So I

> > contacted my pediatrician hoping she will understand and give

> > prescription for helmet. But she said she would not do that and

> asked

> > me to contact the neuro surgeon again to see he if he will agree

> this

> > time. This is so frustrating .

> >

> > I don't have any family here for support . I am really frustrated

> and

> > depressed. I want to do what ever I can do for my baby to help

with

> > his flat head. Has any of you guys ever had such a situation? Any

> > advise would be very helpful.

> >

> > Thanks

> >

>

[Guest guest]

Hi All Finally I started treatment for my son today. I had my son's first consultation and DSI taken at CT today. My son will be getting his band in next 2 weeks. If you guys remember I was having hard time getting a script from my PED and Neuro surgoen. I was so frustated and depressed. couldn't sleep properly all week . I started taking appointments with all the doctors from the list given to me by CT. To my surprise the very first ped who I saw gave me the script rt away. I also heard neuro surgoens from CHOC do not usually recommend bands unless its a very severe case with severe deformity.My baby will be getting his band in 2 weeks. Thanks a lot for all your support and information. I still feel very mad at my first PED. I was never educated on this flat head issue . They should start educating

pregnant women and new moms about it . anyway, will keep you posted about my updates. Once again, I thank each and every one who responded to my emails.-ChandaFrom: calliegal2007 <bojo1235@...>Subject: Re: Pediatrician and Neuro surgeon are not ready to give prescription for HelmetPlagiocephaly Date: Tuesday, August 19, 2008, 6:27

AMI find doctors to be so frustrating at times!I would find another neurosurgeon!Also, if torticollis has not been ruled out, thatshould be checked, from the research I have done.>> Hi > > My 6 1/2 month son has very bad flat head on his back and also has> some flatness on his right side. We noticed it when he was 2 months> old. Our pediatrician asked me to do aggressive repositioning . At> that time, I was completely ignorant of this flat head problem and> could not do aggressive repositioning. But I made sure he was not on> his back in the day time. My baby started sleeping through the nights> from his second month itself and this increased his flat head a lot.> At his 4th month check up, the pediatrician referred him to a neuro>

surgeon. The neuro surgeon asked us to reposition the baby's head and> see if it changes anything . We have been repositioning him at night> times too. I have been making him sleep on his left side . > > Now he is 61/2 months old and we don't see any significant change in> his head shape. He has severe flat head on the back and some flatness> on the right. So we asked the neuro surgeon to give prescription for a> helmet hoping that we will get our baby start on helmet ASAP and he> would have a nice round head in 3-4 months. To our surprise, the neuro> surgeon is not ready to put the baby on helmet. Moreover he says by> the time the baby goes to school, the flat head would be unnoticeable.> We are not convinced with it because he has severe flat head. So I> contacted my pediatrician hoping she will understand and give> prescription for

helmet. But she said she would not do that and asked> me to contact the neuro surgeon again to see he if he will agree this> time. This is so frustrating . > > I don't have any family here for support . I am really frustrated and> depressed. I want to do what ever I can do for my baby to help with> his flat head. Has any of you guys ever had such a situation? Any> advise would be very helpful. > > Thanks>------------------------------------For more plagio info

[Guest guest]

Chanda,

I am curious about the motor skills for these babies.

Would you mind letting me know, is your baby sitting up on his own?

It seems that many of the peds are telling parents that the heads will round

out when they start sitting up, but then these babies don't seem to be

sitting up until 10-11 months, and by then, is more difficult to get those

heads re rounded.

I think these babies are having a difficult time sitting up because their head weight is imbalanced, thus affecting their neck and back muscles.

Anyone have more on this?

My son finally got a referral from his ped for my preemie grandsons to go to Cranial Tech, Inc, near Wash D.C.

Anxious Grandmother

From: calliegal2007 <bojo1235@...>Subject: Re: Pediatrician and Neuro surgeon are not ready to give prescription for HelmetPlagiocephaly Date: Tuesday, August 19, 2008, 6:27 AMI find doctors to be so frustrating at times!I would find another neurosurgeon!Also, if torticollis has not been ruled out, thatshould be checked, from the research I have done.>> Hi > > My 6 1/2 month son has very bad flat head on his back and also has> some flatness on his right side. We noticed it when he was 2 months> old. Our pediatrician asked me to do aggressive repositioning . At> that time, I was completely ignorant of this flat head problem and> could not do aggressive repositioning. But I made sure he was not on> his back in the day time. My baby started sleeping through the nights> from his second month itself and this increased his flat head a lot.> At his 4th month check up, the pediatrician referred him to a neuro>

surgeon. The neuro surgeon asked us to reposition the baby's head and> see if it changes anything . We have been repositioning him at night> times too. I have been making him sleep on his left side . > > Now he is 61/2 months old and we don't see any significant change in> his head shape. He has severe flat head on the back and some flatness> on the right. So we asked the neuro surgeon to give prescription for a> helmet hoping that we will get our baby start on helmet ASAP and he> would have a nice round head in 3-4 months. To our surprise, the neuro> surgeon is not ready to put the baby on helmet. Moreover he says by> the time the baby goes to school, the flat head would be unnoticeable.> We are not convinced with it because he has severe flat head. So I> contacted my pediatrician hoping she will understand and give> prescription for

helmet. But she said she would not do that and asked> me to contact the neuro surgeon again to see he if he will agree this> time. This is so frustrating . > > I don't have any family here for support . I am really frustrated and> depressed. I want to do what ever I can do for my baby to help with> his flat head. Has any of you guys ever had such a situation? Any> advise would be very helpful. > > Thanks>------------------------------------For more plagio info

[Guest guest]

Hi My son first rolled over in his 3rd month. We were so happy. Infact I celebrated this with all my friends. By the 3rd month , we also noticed he had severe flatness on back of his head. So I got paranoid and completely stopped any floor time for the baby. I used to carry him all the time except for tummy time which he never liked . I do not think my baby had spent much time on his tummy. All my friends babies have started rolling over in their 3rd or 4th month and by 5th month they were crawling and sitting up with no support. So I was also hoping to see the same motor skills from my baby by the end of his 5th month . He is 6.75 months and haven't started crawling or sitting up. He can only sit up with support though. He actually started rolling over more often from past 5 days . But he has not completely learned rolling over with grace

yet. Every time I addressed it to my PED, she said it is fine. I always thought since he did not get enough tummy time and floor time, he was delayed at his motor skills. I hope its not because of his Tort or Plagio. am just being optimistic. If not, it will break my heart. I always feel guilty about not being a good mother . If I were, I could have educated myself about plagio and could have avoided all this grief. Not sure if I answered your question, I am just venting it out. - Chanda

From: calliegal2007 <bojo1235@...>Subject: Re: Pediatrician and Neuro surgeon are not ready to give prescription for HelmetPlagiocephaly Date: Tuesday, August 19, 2008, 6:27 AMI find doctors to be so frustrating at times!I would find another neurosurgeon!Also, if torticollis has not been ruled out, thatshould be checked, from the research I have done.>> Hi > > My 6 1/2 month son has very bad flat head on his back and also has> some flatness on his right side. We noticed it when he was 2 months> old. Our pediatrician asked me to do aggressive repositioning . At> that time, I was completely ignorant of this flat head problem

and> could not do aggressive repositioning. But I made sure he was not on> his back in the day time. My baby started sleeping through the nights> from his second month itself and this increased his flat head a lot.> At his 4th month check up, the pediatrician referred him to a neuro> surgeon. The neuro surgeon asked us to reposition the baby's head and> see if it changes anything . We have been repositioning him at night> times too. I have been making him sleep on his left side . > > Now he is 61/2 months old and we don't see any significant change in> his head shape. He has severe flat head on the back and some flatness> on the right. So we asked the neuro surgeon to give prescription for a> helmet hoping that we will get our baby start on helmet ASAP and he> would have a nice round head in 3-4 months. To our surprise, the

neuro> surgeon is not ready to put the baby on helmet. Moreover he says by> the time the baby goes to school, the flat head would be unnoticeable.> We are not convinced with it because he has severe flat head. So I> contacted my pediatrician hoping she will understand and give> prescription for helmet. But she said she would not do that and asked> me to contact the neuro surgeon again to see he if he will agree this> time. This is so frustrating . > > I don't have any family here for support . I am really frustrated and> depressed. I want to do what ever I can do for my baby to help with> his flat head. Has any of you guys ever had such a situation? Any> advise would be very helpful. > > Thanks>------------------------------------For more plagio info

[Guest guest]

Hi Chanda,

You answered very well, Feel free to vent also.

I am kicking myself as the grandmother who didn't do more research, and didn't get enough

info to my children, the new parents!

They kept trying to do what they were told, and they also have had a hard time

getting the twins to keep their heads turned the other way.

Although, I was surprised the didn't feed them from the other side, inside

of letting them rest on the flat side during feedings.

I am sorry I did not connect the dots when I saw how lopsided their heads were, for

heads are quite heavy, and I think it should have occurred to me, that would mean a

strain on one side of their necks, and possibly backs, which I had noticed were not

equal either!

But what really shocks me, is that these doctors don't recognize what a problem it is for a small baby to have a heavy lopsided head to have to try to balance!

Thank you very much for your input.

I don't think any of the parents are to blame for their babies' plagiocephaly! It is quite amazing, I think, that so many parents come to the conclusion these babies need help, considering how little help the parents have received from the doctors, and other medical personnel who they depended upon.

Grandmother of preemies twins, corrective ages 7 months 11 days

From: calliegal2007 <bojo1235@...>Subject: Re: Pediatrician and Neuro surgeon are not ready to give prescription for HelmetPlagiocephaly Date: Tuesday, August 19, 2008, 6:27 AMI find doctors to be so frustrating at times!I would find another neurosurgeon!Also, if torticollis has not been ruled out, thatshould be checked, from the research I have done.>> Hi > > My 6 1/2 month son has very bad flat head on his back and also has> some flatness on his right side. We noticed it when he was 2 months> old. Our pediatrician asked me to do aggressive repositioning . At> that time, I was completely ignorant of this flat head problem

and> could not do aggressive repositioning. But I made sure he was not on> his back in the day time. My baby started sleeping through the nights> from his second month itself and this increased his flat head a lot.> At his 4th month check up, the pediatrician referred him to a neuro> surgeon. The neuro surgeon asked us to reposition the baby's head and> see if it changes anything . We have been repositioning him at night> times too. I have been making him sleep on his left side . > > Now he is 61/2 months old and we don't see any significant change in> his head shape. He has severe flat head on the back and some flatness> on the right. So we asked the neuro surgeon to give prescription for a> helmet hoping that we will get our baby start on helmet ASAP and he> would have a nice round head in 3-4 months. To our surprise, the

neuro> surgeon is not ready to put the baby on helmet. Moreover he says by> the time the baby goes to school, the flat head would be unnoticeable.> We are not convinced with it because he has severe flat head. So I> contacted my pediatrician hoping she will understand and give> prescription for helmet. But she said she would not do that and asked> me to contact the neuro surgeon again to see he if he will agree this> time. This is so frustrating . > > I don't have any family here for support . I am really frustrated and> depressed. I want to do what ever I can do for my baby to help with> his flat head. Has any of you guys ever had such a situation? Any> advise would be very helpful. > > Thanks>------------------------------------For more plagio info