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,

Your son is young enough that you are really not at the panic point like many

of us! However, I would be diligent in pursuing an explanation from your new

ped. If your baby needs treatment then 5-6 months would be a great time to

start! Can you tell us when you noticed the flatness? Has it been there since

birth? Also, could you tell us if your baby seems to favor looking in one

direction? Always laying with the head facing one direction or noticing that

the head always tilts one direction could be a sign of torticollis and that

would need to be addressed as well. If you have noticed any of the signs of

torticollis then you might consider checking out torticolliskids - it's

another group. You said that the face doesn't seem asymmetrical - how

about his ears? When you look down at the top of his head from above - do his

ears look lined-up?

Those are just some things to look for and to specifically ask your new ped

about! In the files section there is a file regarding questions to ask your

doctor. You might check that out and see what it has to say!

You are not too late to start treatment even if you do have to wait a month

or two. In the meanwhile you might try repositioning your baby. Try to get

him to sleep on the side that is not flat and give him plenty of supervised

tummy time!

I'm glad you're with us - please keep us posted on how your visit with the

new ped goes!

Marci (Mom to )

Oklahoma

PS - if you don't mind being a pest (something I am particularly good at) you

might see if you can get an earlier appointment by mentioning you have a

serious health concern that needs to be addressed as soon as possible.

Getting in earlier might give you a little more peace of mind. :-)

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Hi I just want to say that a lot of people have been saying or are told that

the sooner the treatment is started the better and faster the outcome. This

is true however my daughter Tatijana did not get her DOC band until she was

19 months. She is now 20 months old and the out come we have had so far

after one month is amazing. I am not just talking about her head shape her

speech has gotten much better and she has improved 100% on her motor skills

as well. She was being seen by an OT for about a year to work with her

motor skills and she is now done with the OT but we are starting with a

speech therapist to get her caught up in that development area. I just want

to say that yes the sooner the treatment is starter the better but it can

and does work on children even after a year old.

Johanna & Tatijana 6/26/99 DOC since 1/29/2001

>From: edh909@...

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: THANK YOU!!!

>Date: Thu, 08 Mar 2001 20:05:11 -0000

>

>I just want to say thank you for your support. I don't feel so

>alone, or so uninformed. You know more than doctors!! You should

>feel good with the support you are giving other people who don't know

>much about this and are LOST!!!

>

>I don't know understand the terms used, but I really want to learn

>about this. My son's head is flat on the back right side. He

>doesn't seem to have any problems with the front of his face. I

>mean, it doesn't seem unsymmetrical, but maybe that's just because I

>look at him all the time. I have an appt. with a new ped next month,

>then he will be four months. Hopefully, that's not too late to start

>something if we need to.

>

>I don't know what my insurance covers or what doctors are in the area

>or anything like that. I live in Northwest Indiana, if anyone else

>if from around here. I DON'T KNOW ANYTHING!!! I don't know if I

>should wait to see what the new doctor says or start looking into

>these things now. Any advice?

>

> (son Connor, 3 months)

>

_________________________________________________________________

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Johanna,

I could not agree with you more! Sierra who is Brachycephalic, was

fitted with her first DOC band at 15 months; she wore that for 4

months maybe a little less, and has been in her second Band for 4

weeks. I've never asked for the percentage of correction, but I would

say we have had about 70%. I had the fortunate opportunity to meet

a Wagner {a member from the group} at my last adjustment, and she

didn't notice anything wrong with Sierra's head! Yipee! I trust her

opinion!! We also noted that both babies were not phased by the

travel. She flew from OH, and I drove from Michigan. I was expecting

minimal correction, but this is not the case. Kay and I decided

if we get more correction from the Band she is in now, it will just

be added bonus!!! What a Joy in my heart!!!! Let's hear it for our

older ones!!!

I cannot Thank Cranial Technologies enough for the research they have

done for Plagiocephaly!! Give me an exit casting!! Let us pave the

way!!

Sierra 07/99

11/97

Redford, MI

--- In Plagiocephaly@y..., " johanna krebsbach " <tatismom20@h...>

wrote:

> Hi I just want to say that a lot of people have been saying or are

told that

> the sooner the treatment is started the better and faster the

outcome. This

> is true however my daughter Tatijana did not get her DOC band until

she was

> 19 months. She is now 20 months old and the out come we have had

so far

> after one month is amazing. I am not just talking about her head

shape her

> speech has gotten much better and she has improved 100% on her

motor skills

> as well. She was being seen by an OT for about a year to work with

her

> motor skills and she is now done with the OT but we are starting

with a

> speech therapist to get her caught up in that development area. I

just want

> to say that yes the sooner the treatment is starter the better but

it can

> and does work on children even after a year old.

>

> Johanna & Tatijana 6/26/99 DOC since 1/29/2001

>

>

> >From: edh909@y...

> >Reply-Plagiocephaly@y...

> >Plagiocephaly@y...

> >Subject: THANK YOU!!!

> >Date: Thu, 08 Mar 2001 20:05:11 -0000

> >

> >I just want to say thank you for your support. I don't feel so

> >alone, or so uninformed. You know more than doctors!! You should

> >feel good with the support you are giving other people who don't

know

> >much about this and are LOST!!!

> >

> >I don't know understand the terms used, but I really want to learn

> >about this. My son's head is flat on the back right side. He

> >doesn't seem to have any problems with the front of his face. I

> >mean, it doesn't seem unsymmetrical, but maybe that's just because

I

> >look at him all the time. I have an appt. with a new ped next

month,

> >then he will be four months. Hopefully, that's not too late to

start

> >something if we need to.

> >

> >I don't know what my insurance covers or what doctors are in the

area

> >or anything like that. I live in Northwest Indiana, if anyone else

> >if from around here. I DON'T KNOW ANYTHING!!! I don't know if I

> >should wait to see what the new doctor says or start looking into

> >these things now. Any advice?

> >

> > (son Connor, 3 months)

> >

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

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Hi , and welcome to the group!

Don't worry about not understanding the "lingo"! You'll catch on quick, but if you have ANY questions as to what people are babbling about, don't hesitate to ask! :o)

You mentioned that you didn't notice any facial asymmetry. Try looking at the head from the top. Check the ears and forehead. Also try placing your son in front of a mirror. Sometimes it is easier to see asymmetries this way. Look for one larger eye, one puffier cheek, tilted jaw.

4 months is not too late to get started, in fact it's a great age! In the mean time, you might want to try some repositioning. http://www.plagiocephaly.org/support/repositioning_techniques.htm Here is a site with some repositioning suggestions. Check it out. Also check http://www.plagiocephaly.org/ppcs-location.asp . Hopefully you will find a preferred physician in your area here!

Good luck, and keep us posted! :o)

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

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

From: edh909@...

Plagiocephaly

Sent: Thursday, March 08, 2001 12:05 PM

Subject: THANK YOU!!!

I just want to say thank you for your support. I don't feel so alone, or so uninformed. You know more than doctors!! You should feel good with the support you are giving other people who don't know much about this and are LOST!!!I don't know understand the terms used, but I really want to learn about this. My son's head is flat on the back right side. He doesn't seem to have any problems with the front of his face. I mean, it doesn't seem unsymmetrical, but maybe that's just because I look at him all the time. I have an appt. with a new ped next month, then he will be four months. Hopefully, that's not too late to start something if we need to. I don't know what my insurance covers or what doctors are in the area or anything like that. I live in Northwest Indiana, if anyone else if from around here. I DON'T KNOW ANYTHING!!! I don't know if I should wait to see what the new doctor says or start looking into these things now. Any advice? (son Connor, 3 months)

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Glad to hear things are going so well, !

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

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

From: Ssassafras1@...

Plagiocephaly

Sent: Thursday, March 08, 2001 8:15 PM

Subject: Re: THANK YOU!!!

Johanna,I could not agree with you more! Sierra who is Brachycephalic, was fitted with her first DOC band at 15 months; she wore that for 4 months maybe a little less, and has been in her second Band for 4 weeks. I've never asked for the percentage of correction, but I would say we have had about 70%. I had the fortunate opportunity to meet a Wagner {a member from the group} at my last adjustment, and she didn't notice anything wrong with Sierra's head! Yipee! I trust her opinion!! We also noted that both babies were not phased by the travel. She flew from OH, and I drove from Michigan. I was expecting minimal correction, but this is not the case. Kay and I decided if we get more correction from the Band she is in now, it will just be added bonus!!! What a Joy in my heart!!!! Let's hear it for our older ones!!!I cannot Thank Cranial Technologies enough for the research they have done for Plagiocephaly!! Give me an exit casting!! Let us pave the way!! Sierra 07/99 11/97Redford, MI> Hi I just want to say that a lot of people have been saying or are told that > the sooner the treatment is started the better and faster the outcome. This > is true however my daughter Tatijana did not get her DOC band until she was > 19 months. She is now 20 months old and the out come we have had so far > after one month is amazing. I am not just talking about her head shape her > speech has gotten much better and she has improved 100% on her motor skills > as well. She was being seen by an OT for about a year to work with her > motor skills and she is now done with the OT but we are starting with a > speech therapist to get her caught up in that development area. I just want > to say that yes the sooner the treatment is starter the better but it can > and does work on children even after a year old.> > Johanna & Tatijana 6/26/99 DOC since 1/29/2001> > > >From: edh909@y...> >Reply-Plagiocephaly@y...> >Plagiocephaly@y...> >Subject: THANK YOU!!!> >Date: Thu, 08 Mar 2001 20:05:11 -0000> >> >I just want to say thank you for your support. I don't feel so> >alone, or so uninformed. You know more than doctors!! You should> >feel good with the support you are giving other people who don't know> >much about this and are LOST!!!> >> >I don't know understand the terms used, but I really want to learn> >about this. My son's head is flat on the back right side. He> >doesn't seem to have any problems with the front of his face. I> >mean, it doesn't seem unsymmetrical, but maybe that's just because I> >look at him all the time. I have an appt. with a new ped next month,> >then he will be four months. Hopefully, that's not too late to start> >something if we need to.> >> >I don't know what my insurance covers or what doctors are in the area> >or anything like that. I live in Northwest Indiana, if anyone else> >if from around here. I DON'T KNOW ANYTHING!!! I don't know if I> >should wait to see what the new doctor says or start looking into> >these things now. Any advice?> >> > (son Connor, 3 months)> >> > _________________________________________________________________> Get your FREE download of MSN Explorer at http://explorer.msn.com

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  • 4 years later...
Guest guest

Ida,

You are blessed with quite a little man, there. My 1st grandson just

turned 5 and will also be starting kindergarten this fall. That is

such a wonderful age to be; full of fun and energy. I'm sure he will

be glad to help you when your hands don't work. It makes him feel

very important! In 6 more years he'll be Mr Attitude, so enjoy it

while it lasts.

Being new to this disease gives you a different perspective than

those who have had it for years. It stinks! But I for one cannot

maintain all the negative emotions - resentment because I'm so

restricted, anger at how unfair it is, anxiety over the future. If

you dwell on the negative, it just sucks what little energy you have

right out of you.

I think the hardest battles people with chronic illness face are the

mental ones. Scientists see that a lot of people with chronic

illness have depression. So they are wondering " does depression make

people susceptible to chronic illness? " But WE know that you can put

ANYONE in chronic pain and after a few months it's a miracle if

they're NOT depressed. Having a chronic illness is kinda like being

king of the jungle one minute and in a 10x12' cage the next. It

takes some effort (and sometimes counselling and medication) to find

the positive side of life. But we have to try.

That said, do I like having RA? Absolutely not! But it sure beats

being dead.

Nina

> Nina,

>

>

> Thank you for all your support and understanding. I just feel so

much

> better just knowing I am not alone. My oldest son has taken on

more

> jobs than I had planned but I just couldn't use my hands

sometimes.

> He is a great help and there are some days I don't know what I

would

> do without him. He is starting Kindergarten in the fall and I

just

> can't believe that he is growing up so fast. My mother-n-law has

RA

> too but she is in a totally different state than I am in. She

said

> that I am teaching my boys compassion and they will be better for

it.

> I haven't gotten to that way of thinking yet. She thinks she is a

> better person for having the disease and right now I can't think

of

> anything good about this disease. Maybe someday!!!

> Thanks again,

> Ida

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Nina,

WELL SAID! TRACIE

> > Nina,

> >

> >

> > Thank you for all your support and understanding. I just feel

so

> much

> > better just knowing I am not alone. My oldest son has taken on

> more

> > jobs than I had planned but I just couldn't use my hands

> sometimes.

> > He is a great help and there are some days I don't know what I

> would

> > do without him. He is starting Kindergarten in the fall and I

> just

> > can't believe that he is growing up so fast. My mother-n-law

has

> RA

> > too but she is in a totally different state than I am in. She

> said

> > that I am teaching my boys compassion and they will be better

for

> it.

> > I haven't gotten to that way of thinking yet. She thinks she is

a

> > better person for having the disease and right now I can't think

> of

> > anything good about this disease. Maybe someday!!!

> > Thanks again,

> > Ida

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