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Hi !

You have found several new friends in here! You are right, it is

better to treat plagio at a younger age. But your daughter will

still be young enough even if you have to wait the 3 wks to see the

neuro.. We all understand how terrified you are right now, the

thought of putting this helmet on top of your baby's head? YIKES!!!

I thought that would be the cruelest thing to do to my daughter. But

it wasn't. She went about her normal happy little life, content as

could be. Wait to see what the neuro tells you and go from there.

I'm sure you are up at night worrying about it and checking

desperately for info on the internet. Oh, don't I know!!!!!!

Please keep us updated.

Debbie Abby's mom 3/1/00 DOCband 2/16/01-6/220/1

Check out Abby's website for our story!

Here's the link :)

http://www.fortheloveofmommy.com/AbbyGator.htm

> Hi everyone. I am new to this group and decided to join after my

ped.

> referred me to a neurosurgeon re: my daughter's flattening on the

> right side (she always favored). I was concerned about it at 2mos

but

> he said it was mild and to rotate her. We did that and now we are

> going to a neurosurgeon. I am really nervous and dread the thought

of

> her having to wear a helmet. She is 5 months now and we can't even

> get in to see the Dr. for another 3 weeks! I was so upset b/c I

read

> that if you diagnos and treat early, there is less time to wear the

> helmet. Upon referral she was 4 mos and we can't get in to the

> Neuro's office for 2!?!?

>

> Anyway, do you all have any advise or ANYTHING you can tell me

about

> this?

>

> Looking for new friends,

>

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Hi ,

Welcome to the group. Since you stated that your daughter always favors one side, and her head is flat in the back on one side, I would like to ask you if you notice any tilting of her head? Does she always turn just one way?

Can she turn her head both ways? If not, she may have torticollis, which is basically a tight muscle. It's nothing to be alarmed of, only aware, so that you can start stretching that muscle with the help of a pt. I want you to check out torticollis , and read posts so that you can determine if you think this might apply. Ask your Doc to check it out also.

The fact that she is still young is great, so get a move on to rule out tort. Schedule an appt. with your ped to check for this specifically. You will notice it if you look at pictures and she is tilting her head, check the "feel" of her neck, does she have very little room on the side that she does not favor between her neck and shoulder? Please let us know, and keep us posted! We're here for ya! BTW, My son was dx with tort at 8 weeks and as a result, developed a flat spot and facial asymmetry that we have corrected with the DOC band.

' Mom

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  • 2 weeks later...

,

1) Peptizyde sometimes causes a temporary diuretic effect. Your

son's body should adjust within the first two weeks to the extra

water released from the proteins being broken down.

2) Others have reported increased stimming as their child adjusts to

the enzymes. Your son may be experiencing heightened senses and

stims as a way to deal with this. This should subside with time. It

is also possible your son is reacting to one of the ingredients -

possibly the glutamine in the Peptizyde. If this gets worse, repost

and we possibly help you determine the problem. If the hyperactivity

becomes a big problem, you may need to drop the Peptizyde and start

back on it slowly at a reduced dose or with one or two meals a day,

then increase to every meal.

3) The mushy poop is a common reaction for the first week or two, but

I'm not sure why you would be seeing the stools change from typical

to yellow. For my son, the color changed from yellowish gray to

brown. Maybe someone else can comment.

Repost if you have more questions.

--- In @y..., LaBranche <celabranche@y...>

wrote:

> Fellow listers~

> My 3.11 ASD son has been GFCF for over a year and we

> started the Peptizyde and Hn-Zyme Prime 10 days ago.

> My son weighs 34 lbs and is getting one capsule each

> at breakfast and at dinner.The following are some

> reactions we are noticing.

> 1)He is suddenly wetting alot-was scheduled potty

> trained during the day.

> 2)Very stimmy-chewing on everything(he has never

> chewed on anything before)

> 3)mushy yellow poops-(has been normal firm brown the

> past 4-5 months)

> Any advice would be appreciated.

>

>

> __________________________________________________

>

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  • 1 month later...

Welcome :

Welcome to our group! I am so sorry to hear of your son's upcoming

surgery. My heart goes out to your family. Most of the fellow

parents in this group have been lucky enough to experience only

plagiocephaly, and not craniosynostosis. I cannot help you with your

questions. Have you visited the CAPPS website? A very helpful

website with a lot of good info on cranio & plagio both. Maybe that

would be of help to you? There is also a group like this for

cranio parents. MAybe someone in there could offer much needed

advice. There are a couple cranio parents that are members of our

group who have later used a band post-cranio surgery to help with any

addt'l flatness.

I'll be thinking of your son in 2.5 wks.. Please keep us updated &

let us know what your 3rd opinion Dr. tells you.

Debbie Abby's mom DOCgrad 6/22/01

Michigan

here is the link to the capps website if you haven't already checked

it out - I hope it helps :)

http://cappskids.org/

> Hello everyone. My name is Alison. My son was just diagnosed with

> metopic craniosynostosis, and positional plagio just last week. My

> son will undergo surgery in 2 1/2 weeks and i was wondering if any

> one had these 2 conditions also. I went to the 1st Dr. and he said

he

> would do a cranioplasty to fix the metopic suture down his

forehead,

> and while he was in there he would remold the left side of the

> lambdiod. The 2nd Dr. said he would only do the surgery in the

front

> and then try positional therapy for the left backside of his head.

I

> am actually going for a 3rd opinion on monday but i was interested

in

> what anyone may have experience in or maybe just know of. Thank you

> for listening. Alison

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hi, thank you for your feedback on my situation. It is greatly

appreciated. I have checked out the other support group for the

cranio, thank you. I have not heard anything about anyone having bith

cranio and plagio. I am just concerned with doing the surgery for

the plagio or should we just do the surgery for the cranio. I am so

confused. My son Tyler also had a pyeloplasty (kidney) 2 1/2 months

ago and they are saying he may need another one in about 4 months

from now and i am just totally stressed out. Does anyone else have

any kidney problems cuz the neuro said sometimes it can be asociated

with the cranio/plagio. Thanks for listening. Alison

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Alison,

Welcome to the group. Sounds like you are facing a very tough decision.

Hopefully the third opinion will help you put everything together so you can

come to an informed decision. I believe someone has already mentioned

checking out the CAPPS page and I second that. You will find a group of moms

there who will be able to answer any and all questions you may have about

cranio and surgery for cranio. I'm wondering if your son couldn't have the

surgery for just the cranio and then wear a band or helmet to help with the

healing process AND with the plagio. Has this option been offered? I would

ask about it.

I believe your previous email mentioned that you would get the third opinion

on Monday - I hope that goes well and I hope you will let us know what you

find out from that specialist. Good luck and keep us posted!!

Marci (Mom to )

Oklahoma

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Alison,

I have never heard of kidney problems being related to plagio, I don't know

about it being related to cranio. Definately a good question for the third

specialist!

Let us know what you find out!!

Marci (Mom to )

Oklahoma

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Hi Alison and welcome to the group! We do have some cranio moms

here, so hopefully they will respond to you. As far as I know, it is

fairly common to receive a band after surgery to aide with the

reshaping of the head, is this what the second doctor was referring

to? Did your doctor explain how the kidney and plagio/cranio were

related, I had never heard that before. I love this group, I learn

something new everyday. Sounds like your little guy has had a rough

start, I hope your third opinion can give you better news. You and

your family will be in my thoughts. Good luck to you and please keep

us posted.

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> Hello everyone. My name is Alison. My son was just diagnosed with

> metopic craniosynostosis, and positional plagio just last week. My

> son will undergo surgery in 2 1/2 weeks and i was wondering if any

> one had these 2 conditions also. I went to the 1st Dr. and he said

he

> would do a cranioplasty to fix the metopic suture down his

forehead,

> and while he was in there he would remold the left side of the

> lambdiod. The 2nd Dr. said he would only do the surgery in the

front

> and then try positional therapy for the left backside of his head.

I

> am actually going for a 3rd opinion on monday but i was interested

in

> what anyone may have experience in or maybe just know of. Thank you

> for listening. Alison

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The kidney problems would not be related to plagio, but often there are syndromes which are associated to cranio. There may be a syndrome where kidney problems are evident.

On the flip-side, the kidney problems just may be a whole different issue, not being related at all. Definitely ask your 3rd opinion Dr.! If it does turn out to be cranio, you will likely have to go through a serious of genetic tests to find out if any syndromes are involved.

Good luck, and please let us know what you find out!

Kendra in Canadawww.plagiocephaly.org/support/Plagiocephaly/joinhttp://geocities.com/kendraandhanna/

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

From: marcisch@...

Plagiocephaly

Sent: Monday, October 01, 2001 10:02 AM

Subject: Re: Re: New to the group

Alison,I have never heard of kidney problems being related to plagio, I don't know about it being related to cranio. Definately a good question for the third specialist! Let us know what you find out!!Marci (Mom to )OklahomaFor more plagio info

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  • 3 months later...

Hi Sherry and welcome to this group. My daughter just graduated from wearing a DOC band last week. She was treated for a total of 7 months with 2 bands starting at 6 months. This group has been very helpful and supportive and I think there are a few people who can give you advice. However who has slipped my mind.

Welcome

Anne

mom of Livia

Canada

new to the group

Hello, my name is Sherry. My son Mason is almost 11 months old and just got his helmet 2 days ago. Has anyone else started this late, and if so how long did it take to complete the helmet therapy? Also Masons head is very small, in the fifth percentile, and he is behind developmentaly. Any clues to my mystery would be greatly appreciated because the dr's seem to think that he will just start moving one day. I hope that they are right , but i dont know what to think. Thanks for any help you can offer. sherry mom to mason 11 monthsFor more plagio info

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Hi Sherry & welcome to our group!

What type of helmet did Mason receive? is it a DOCband, STARband or

locally made helmet? Is his plagio severe, moderate, mild?

11 mos old is definitley not too late to start treatment. My

daughter rec'd her DOCband when she was 11.5 mos old, she wore it 4.5

mos, had severe plagio & we still were able to receive about 50-60%

correction. At 11 mos., Mason probably won't receive full

correction, but anything is better than nothing! It all depends on

his growth spurts, etc..

There have been several head circumference questions in here in the

past. I can't really offer any good advice/input on the subject.

Has Mason rec'd any xrays or CT scans to rule out craniosynostosis?

(premature fusing of the skull bones).

I'm so glad you joined our group. I look forward to reading about

Mason's rounding head in the upcoming mos..

Debbie Abby's mom DOCGrad

MI

> Hello, my name is Sherry. My son Mason is almost 11 months old and

> just got his helmet 2 days ago. Has anyone else started this late,

> and if so how long did it take to complete the helmet therapy?

Also

> Masons head is very small, in the fifth percentile, and he is

behind

> developmentaly. Any clues to my mystery would be greatly

appreciated

> because the dr's seem to think that he will just start moving one

> day. I hope that they are right , but i dont know what to think.

> Thanks for any help you can offer.

>

> sherry mom to mason 11 months

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Sherry:

Although head size can vary a great deal with kids (my daughter was always in the 90th percentile-height and weight, but her head has always been in the 15th or lower), it is important that craniosynostosis be ruled out. Did Mason have x-rays or a CT scan done at any point? If not, you may want to ask for one, just to make sure.

I know it can be frustrating when your baby seems like he's not "keeping up" with his peers, but always remember that every baby is different! I know it's hard not to compare to other kids, but if your doctor isn't concerned, maybe ask for a second opinion, or a referral to Early Intervention??? Your doctor(s) will be able to tell you why or why not something like that would be appropriate for your situation. Make sure all answers given to you are clear, and that you understand. If you have any doubt, get a second opinion, or simply call EI in your state for a free evaluation.

Good luck, and please keep us posted!

Kendra in Canada

new to the group

Hello, my name is Sherry. My son Mason is almost 11 months old and just got his helmet 2 days ago. Has anyone else started this late, and if so how long did it take to complete the helmet therapy? Also Masons head is very small, in the fifth percentile, and he is behind developmentaly. Any clues to my mystery would be greatly appreciated because the dr's seem to think that he will just start moving one day. I hope that they are right , but i dont know what to think. Thanks for any help you can offer. sherry mom to mason 11 monthsFor more plagio info

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Hi, Mason has a locally made helmet. He has had both an mri and a 3 d CT

scan. The radiologist said that his bones are fused but the neurosurgeon

that we went to said that they only look that way because his head is so

small? I am looking into a second opinion on that. I look forward to

getting to know all of you here.

sherry

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Hi Sherry,

Welcome and I'm glad you have joined us. We have lots of people here who

started as late or later then Mason did and had good results. The amount of

time varies depending on growth spurts. They are fewer and further in between

as the baby gets older - that's why correction happens more slowly in older

babies.

What kind of band do you have? Also, did you have a CT scan? I look forward

to hearing more from you and hearing more of your story.

Marci (Mom to )

Oklahoma

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Hey Sherrry welcome to the board- you found a great place for info support and friendship and we are glad you are here. We have had many others start later and have seen correction- maybe if Mason's head is small then you will still see some great growth spurts and good correction. We have also seen alot of babies take of developentally once banded- we dont know if it is coincidence or not but many moms can attest to that. Have you gotten a CT scan or xrays done? I would be sure to ask for that to rule out Cranio and if you have only had xrays done then maybe you want to push for a ct scan to be sertain. Another thought is to call for an Eary Intervention evaluation- I am not sure where you are located but here is a link you can use to research what is in your state and how to get ahold of them It is a free evaluation and if Mason is behind then he may qualify for some extra services to help him catch up- so why not??? Click here: ACF - Contacts or Click here: National Child Care Information Center

I have to run baby is crying hope all goes well please let us know if you need more help or resource links

Beck mom to brian

doc grad

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Sherry,

I'm glad you are seeking a second opinion! It's scary that you are getting

two different stories! Please let us know what you find out.

Marci (Mom to )

Oklahoma

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  • 2 months later...
Guest guest

Hi Kim,

Welcome to the group!! The sad part about tort is one day you think they are fine, the next they may be tilting again and the muscle is tight all over- that's why they tell you to continue stretching until 2 (we stopped, but have him stretch on his own, turning, looking up, reaching, etc.- this muscle effects all different parts of body, not just the neck). My son was dx at 2 months and we were in pt until he was 9 months old. It's important that you supplement stretching at home, everday, as much as possible. I would recommend joining torticolliskids or check out www.torticollis.org for more tips and info. They were an invaluable source of info and sounding board. I will attach a link of stretches as well- please ask any questions you may have. My son received the DOC band as well- its virtually impossible, in my experience, to keep tort kids off that flat spot if they are severe. I found massaging the neck area also very helpful, everday, including the facial area. Keep an eye on posture, they have a tendency of pulling up their shoulder (and some the hip) on the tort side that may cause upper scoliosis; you can do light massage and gentle pull down of the arms to help stretch the muscle and correct the "cramped" up shoulder problem. Good for you that your mommy instincts have you back in therapy!!! Your a great mom to be so aware when Doctors are not giving you any direction, I know, been there done that! I'm curious about the neck splint- does that limit range of motion? You have to work on the range as well, if the splint is confining and only works on the tilt, make sure your not putting the cart before the horse; the tilt is usually the last to go- its the ability to turn the head that starts the wheel turning to resolve. Please email me if I can help you in anyway.

Good luck, keep your chin up, it does get easier and there is a light at the end of the tunnel. My son was considered severe also and with much aggressive therapy, he is considered resolved! It was a long hard road, keep the faith! You will have such relief once is in the helmet- you will be able to concentrate on the tort and the helmet will work on the plagio!!!

' Mom (tort resolved, DOC grad)

Stretches

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Hi Kim & welcome to our group!

We have had a lot of new members join lately, terrific! Do you know

what type of helmet will be getting - a DOCband, STARband or a

locally made helmet?

What a shame about his tort. - thank goodness you are a great mom &

wouldn't take no for an answer to get the phys. therapy he

needs. Too many Drs are too laid back regarding both tort &

plagio.. You're doing the right thing for him!

You said will be fitted for his helmet Mon., is this for the

casting or was he already casted? If so, how'd that go?

We're glad to have you in our group - we look forward to getting to

know you in the next few mos while 's head is rounding!!! ;)

Debbie Abby's mom DOCGrad

MI

> Hi, My name is Kim and I just wanted to introduce myself. My son

> was diagnosed with torticollis when he was 2.5 months old. We

> were told it was very mild and after three sessions with a PT the

> orthopedist said was fine and sent us on our way.

> I was very worried about the flat spot on the back of 's head

> but was told by the peditrician and orthopedist that it will go

away

> on its own.

> Well, is 9 months now the plagiocephaly did not go away and

> the torticollis is pretty severe. After a lot of pushing from me,

we

> are going to PT 3x a week now and has to wear a neck splint

to

> help with the head tilt. Monday he is being fitted for a helmet.

I'm

> not sure what to expect and I'm a little nervous about it. I'm glad

I

> found this group and I'm sure I will have a lot of questions once

> starts wearing the helmet.

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Guest guest

,

Thanks for the link about the stretches and all the other info! I feel just awful about not keeping up the stretches when he was younger. Nobody really explained how important it was and how quickly things change. From what the ortho said I thought was "cured". I've really learned from this experience that you have to do your own homework and not rely on the doctors to tell you everything.

About the splint, it does limit range slightly however is not in the splint all that much. Mainly we use it when he is in his highchair or when he is sitting up for an extended period. It doesn't support his neck as much as gives him a cue to hold his neck up straight. I make sure he gets plenty of tummy time without the splint and he doesn't wear it when we are doing the stretches. I've seen a tremendous improvement in the past 2 weeks and the pt's are very happy with his progress. is still a candidate for surgery. The doc wanted to wait 6 weeks with aggressive therapy and then decide. Oh, the guilt :(

Kim

Re: New to the group

Hi Kim,Welcome to the group!! The sad part about tort is one day you think they are fine, the next they may be tilting again and the muscle is tight all over- that's why they tell you to continue stretching until 2 (we stopped, but have him stretch on his own, turning, looking up, reaching, etc.- this muscle effects all different parts of body, not just the neck). My son was dx at 2 months and we were in pt until he was 9 months old. It's important that you supplement stretching at home, everday, as much as possible. I would recommend joining torticolliskids or check out www.torticollis.org for more tips and info. They were an invaluable source of info and sounding board. I will attach a link of stretches as well- please ask any questions you may have. My son received the DOC band as well- its virtually impossible, in my experience, to keep tort kids off that flat spot if they are severe. I found massaging the neck area also very helpful, everday, including the facial area. Keep an eye on posture, they have a tendency of pulling up their shoulder (and some the hip) on the tort side that may cause upper scoliosis; you can do light massage and gentle pull down of the arms to help stretch the muscle and correct the "cramped" up shoulder problem. Good for you that your mommy instincts have you back in therapy!!! Your a great mom to be so aware when Doctors are not giving you any direction, I know, been there done that! I'm curious about the neck splint- does that limit range of motion? You have to work on the range as well, if the splint is confining and only works on the tilt, make sure your not putting the cart before the horse; the tilt is usually the last to go- its the ability to turn the head that starts the wheel turning to resolve. Please email me if I can help you in anyway.Good luck, keep your chin up, it does get easier and there is a light at the end of the tunnel. My son was considered severe also and with much aggressive therapy, he is considered resolved! It was a long hard road, keep the faith! You will have such relief once is in the helmet- you will be able to concentrate on the tort and the helmet will work on the plagio!!! ' Mom (tort resolved, DOC grad)StretchesFor more plagio info

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Kim -

My son was dx with tort and plagio at 8 weeks. We were told at the

hospital to only lay him on his right side (duh!), so everything was

positional. After just a few days on his left his neck started to

loosen up a bit. We only went twice to pt and then I was told his

neck was fine and his head will round out over time.

When we decided to get the DOC Band with Karmel Ross (who is

my hero), she asked us to get a new script for pt too. She said

they need to go through 3 growth spurts without any tightness.

Dane's tort is pretty mild I would say because he doesn't have the

tilt thing, but his neck does tighten up each time he grows.

Just wanted to let you know about the 3 growth spurt thing. I

wasn't told about that from our original pt.

Dane's mom (DOC Band 2/14)

> Hi, My name is Kim and I just wanted to introduce myself. My son

> was diagnosed with torticollis when he was 2.5 months old.

We

> were told it was very mild and after three sessions with a PT the

> orthopedist said was fine and sent us on our way.

> I was very worried about the flat spot on the back of 's

head

> but was told by the peditrician and orthopedist that it will go

away

> on its own.

> Well, is 9 months now the plagiocephaly did not go away and

> the torticollis is pretty severe. After a lot of pushing from me,

we

> are going to PT 3x a week now and has to wear a neck splint

to

> help with the head tilt. Monday he is being fitted for a helmet.

I'm

> not sure what to expect and I'm a little nervous about it. I'm

glad I

> found this group and I'm sure I will have a lot of questions once

> starts wearing the helmet.

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Guest guest

Kim,

Welcome to the group! I'm sorry to hear that your drs did not step up and do

the right thing by you and your baby! I can't believe they let things slip

that way. It sounds like you are on the right track now and are doing all you

can to help your baby.

You will be surprised at how easily your baby adapts to the helmet. I was

shocked at how quickly my baby adjusted to her helmet. It was stressful to

think about how the casting would go and how she would adjust, but it was

much, much easier then I thought it would be!

Good luck and let us know how the fitting goes.

Marci (Mom to )

Oklahoma

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  • 2 weeks later...
Guest guest

,

Welcome to the group!! I know plenty of members will probably help you with

the insurance letters as there are so many that are appealing. Just wanted

to welcome you!

' Mom (Tort resolved, DOC grad)

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Guest guest

,

Great news that Grant is on his way to wearing a STARband. It may seem like

paranoia, but the fact that you are well aware of what problems COULD occur,

will keep you on top of what's going on and ensure that you don't run into

those things. Its better to be aware than waste precious time if things are

not working out- although we have had MANY members with locally made bands

and STARbands that have had great success. I'm sure Grant will do just

great! Keep us posted!

' Mom (Tort resolved, DOC grad)

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  • 1 month later...
Guest guest

Hi & welcome to our group!

Your post was just fine with absolutely no faux pas :)

Most pediatrians and even specialists give us parents the good

old " don't worry, his head will round out on it's own over time "

story, or " hair will cover it " . With some babies, this may be

true. We have had a couple of posts from a 27 yr old man who had

untreated plagio & his head is still flat today. My daughter is a

DOCband graduate, wore her band from age 11.5 mos - 15.5 mos with

good correction, although some flatness remains. She graduated 11

mos ago already & unfortunately I haven't noticed much improvement on

it's own w/o the band.

You are on the right path now though to getting your son help. What

type of specialist will he be seeing next month? Have you been to

www.plagiocephaly.org/support webpage? There's a ton of great plagio

information as well as a great list of " questions for the Dr " . You

might want to consider printing this page out & bringing it to the

specialist with you to ask.

In the mean time, you could still attempt repositioning. There are

great repositioning tips at the above website I listed. Is your son

sitting up on his own yet? Or playing in the exesaucer/walker? If

so, that helps keep pressure off his head being in the upright

position.

Your son is still plenty young enough to achieve correction, either

with a helmet or band or with repositioning.

Welcome again to our group. We look forward to getting to know you &

Kale more :)

Debbie Abby's mom 3/1/00 DOCgrad 6/22/01

MI

> Hello everyone,

>

> My name is and I've never joined a newsgroup

> before and am not very knowlegeable about newsgroup

> etiquette so please forgive me if I commit a faux pas.

> I would greatly appreciate any advice you could

> offer.

>

> My baby boy is 6 1/2 months old. We first noticed the

> flattening of the back of his head about 3 months ago.

> Our pediatrician assured us that this was quite

> common and that it would round out. Three months

> later, it has improved a little but not much. From

> the front, his ears now look even however, one side is

> still sunken in at least 3/4 inch deeper than the

> other. On his little head, this is very noticeable.

> Our pediatrician has booked us an appointment with a

> specialist for mid June even though she believes it

> will round out. Is this true? Does anyone have a

> baby with plagio whose head evened out without the

> helmet/band? Does anyone regret getting the helmet?

> If I find out that he is borderline for getting a

> helmet/band I'm not sure which way to go. Does anyone

> know plagio babies who are now older children or

> adults who live with the mishapen head?

>

> I would be so greatful for any information or

> experience. I only recently found out that this

> condition was called plagiocephaly. I wish I had

> discovered this site much earlier because I could have

> used the suggested techniques for repositioning. All

> this time, I've just been turning his head using my

> hands, which is often a futile exercise.

>

> Thanks so much

> (Kale's mom)

>

> =====

>

> Lin

> mjl@y...

>

> __________________________________________________

>

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