Need Advice

September 24, 2004

Thanks Dana,

I think I'll try it again and see what happens and try some other yeast

killers.

On Sep 24, 2004, at 9:45 AM, danasview wrote:

>

> > Thanks Dana,

> >

> > With his behavior below par I can feel free to experiment a little.

>

> I have had those weeks!

>

> >>Maybe this could mean that it

> > is the ones that can build up are the ones he is having trouble

> with?

>

> Possibly.

>

> > Would you continue to chelate with less than the full slate of

> > supplements?

>

> I chelated my kids at first without any supplements other than enzymes

> and occasional GSE. They only started tolerating supplements at about

> round 50. Just go slowly and watch for yeast or other signs of

> problems.

>

> Dana

>

> =======================================================

>

October 5, 2004

Welcome, ! Boy, that physical therapist did you a favor!

Really, buy her chocolate. Or send it to me if she doesn't want it.

A lot of peds tell parents the baby's head will round out on its own.

Research indicates that it generally doesn't, especially with

torticollis (the neck problem you described). You can start

aggressive repositioning now (there is info in our FILES section) but

with tort it's very difficult to get the baby to sleep on the non-

flat side.

Your child will probably need a DOC Band to correct the head shape.

There is some good news, though, so don't get upset yet! First, this

is correctable if treated early. At 3 months your daughter is at a

great age to get correction from a band. Research shows that the

earlier a baby starts treatment, the better the correction received.

So don't put off any visits to the pediatrician and do NOT let him

tell you it will get better on its own or that he does not recommend

a band. Tell him YOU want a band and that's that. Hopefully there is

a Cranial Tech facility near you (go to www.cranialtech.com and

check). CT are truly wonderful--all they do is treat plagiocephaly

and they really know what they are doing.

To explain why I am so adamant and tactless about this (group

protocol would generally be to gently tell you that the decision is

up to you and we'll be behind you all the way--which is true!--and

give you some equally gentle suggestions, but I'm not in a gentle

mood lately after what happened to my son): anyway, my son's docs

blew off his head shape, told me it would correct itself, said it was

mild, etc. He did not get treatment until nearly 18 mos. Fortunately

he got a DOC Band and the results were really good, but no thanks to

his doctors. If they had their way he would grow up funny-lookin'.

Your daughter can get excellent (possibly full) correction to her

head shape at such a young age, even if you have to fight insurance a

little bit to get approval.

Post back with any questions! Hope I didn't offend or upset you. Give

the little blob a big kiss from me!

, 22 mos, DOC Grad 9/7

>

> Hi everyone. My daughter is 3 months old. On our 2 month visit to

> the doctor, the first thing that he told me when he first looked at

> her was that the asymetry of her head would go away. Now this

> weekend we were at a dinner where a relative who is a pediatric

> physical therapist was there. She held my daughter and right away

> came over to me and expressed concern. she said that she had been

to

> a seminar on heads. She even went and got literature out of her

> car. She feels that my daughter has moderate to severe

> plagiocephaly. Looking at the pictures that she has, I would

agree.

> She also said that my daughter has neck involvement. My daughter

is

> always looking to the left. She will follow something to the right

> with her head, but goes right back to the left. The therapist said

> that my daughter does not have full range in her neck on the right

> side. She wants her to get therapy once a week and also wants my

> daughter to get a DOC.

> I really need advice. We are taking her to the doctor today to

talk

> with him about it. I don't know whether to take the conservative

> approach that he is going to want me to do or do the band.

> According to the charts and graphs that the therapist showed to me

my

> daughters plagiocephaly is too severe to have repostioning therapy

> work. I don't want to do the wrong thing and regret it later. If

> anyone has advice, I would love it. Sorry this is long.

> Thank you,

>

October 5, 2004

,

You don't know lucky you are to have a PT in your family that

recognizes your daughters plagio. Alot of doctors take the " it'll

round out on it's own " view. Don't listen to it. Some kids do, but

just as many kids don't. Sounds like your daughter also has

torticollis which makes repositioning difficult if not impossible.

Don't fear the band. It's not so scary after you see the results.

Asymmetry can be corrected with a helmet so it's always worth the

try. With her young age it's possible you could acheive great results

in a shorter time. But if you are considering to band her the sooner

the better.

If you have the time take a look at our plagio kids photos. You can

see many, many different types of head shapes. Some with assymetry,

some without.

Good luck,

Crista-Grayslake, IL

D-12 mo-brachy DOCgrad

- In Plagiocephaly , " eigenwijszus "

<eigenwijszus@y...> wrote:

>

> Hi everyone. My daughter is 3 months old. On our 2 month visit to

> the doctor, the first thing that he told me when he first looked at

> her was that the asymetry of her head would go away. Now this

> weekend we were at a dinner where a relative who is a pediatric

> physical therapist was there. She held my daughter and right away

> came over to me and expressed concern. she said that she had been

to

> a seminar on heads. She even went and got literature out of her

> car. She feels that my daughter has moderate to severe

> plagiocephaly. Looking at the pictures that she has, I would

agree.

> She also said that my daughter has neck involvement. My daughter

is

> always looking to the left. She will follow something to the right

> with her head, but goes right back to the left. The therapist said

> that my daughter does not have full range in her neck on the right

> side. She wants her to get therapy once a week and also wants my

> daughter to get a DOC.

> I really need advice. We are taking her to the doctor today to

talk

> with him about it. I don't know whether to take the conservative

> approach that he is going to want me to do or do the band.

> According to the charts and graphs that the therapist showed to me

my

> daughters plagiocephaly is too severe to have repostioning therapy

> work. I don't want to do the wrong thing and regret it later. If

> anyone has advice, I would love it. Sorry this is long.

> Thank you,

>

October 5, 2004

Hi ,

Like mentioned, the neck condition is called torticollis and

if you do nothing else, get your daughter into physical therapy. At

age 3 months you would still have a window of opportunity for

repositioning. Why don't you look in our photos section to see what

some babies look like that are banding candidates? Also, would you

like to post a picture of her for us to look at? If you decide that

banding is the route you would wish to take then you'll want to get

the ball rolling. THe younger the child, the better the results

usually. What area do you live?

Natasha

>

> Hi everyone. My daughter is 3 months old. On our 2 month visit

to

> the doctor, the first thing that he told me when he first looked

at

> her was that the asymetry of her head would go away. Now this

> weekend we were at a dinner where a relative who is a pediatric

> physical therapist was there. She held my daughter and right away

> came over to me and expressed concern. she said that she had been

to

> a seminar on heads. She even went and got literature out of her

> car. She feels that my daughter has moderate to severe

> plagiocephaly. Looking at the pictures that she has, I would

agree.

> She also said that my daughter has neck involvement. My daughter

is

> always looking to the left. She will follow something to the

right

> with her head, but goes right back to the left. The therapist

said

> that my daughter does not have full range in her neck on the right

> side. She wants her to get therapy once a week and also wants my

> daughter to get a DOC.

> I really need advice. We are taking her to the doctor today to

talk

> with him about it. I don't know whether to take the conservative

> approach that he is going to want me to do or do the band.

> According to the charts and graphs that the therapist showed to me

my

> daughters plagiocephaly is too severe to have repostioning therapy

> work. I don't want to do the wrong thing and regret it later. If

> anyone has advice, I would love it. Sorry this is long.

> Thank you,

>

October 5, 2004

Hello ,

Welcome to the group. I'm glad you joined us. Is it possible for

your friend to come along when you go back to see your ped? Also you

can schedule free evaluations from Cranial technologies. They will

give you an honest opinion, and usually do not recomend banding

unless needed.

I hope your doc will come around and realize that times have changed,

and that plagiocephaly is not something that will just go away. It's

not like a common cold.

Also the neck involvement. This sounds like your daughter could have

torticollis, and at her age would be easier to resolve than if you

wait. Torticollis needs to be adressed as fast as possible, b/c with

it repo is even harder than with non tort kids.

You can also get in touch with Early Intervention / or Birth to three

in some states, and they will do an evaluation as well. If your

daughter qualifies then they will do PT at your home for free. I'm

glad for you that your friend made you aware of all this. Good luck

getting started and keep us informed on how it goes.

If I were you, I would demand an Rx for a band. That way you are set

IF you decided to go that route, and if not you can always throw it

away.

Sandy Willow's Mom

Torticollis resolved

Cranio Germany Grad

>

> Hi everyone. My daughter is 3 months old. On our 2 month visit to

> the doctor, the first thing that he told me when he first looked at

> her was that the asymetry of her head would go away. Now this

> weekend we were at a dinner where a relative who is a pediatric

> physical therapist was there. She held my daughter and right away

> came over to me and expressed concern. she said that she had been

to

> a seminar on heads. She even went and got literature out of her

> car. She feels that my daughter has moderate to severe

> plagiocephaly. Looking at the pictures that she has, I would

agree.

> She also said that my daughter has neck involvement. My daughter

is

> always looking to the left. She will follow something to the right

> with her head, but goes right back to the left. The therapist said

> that my daughter does not have full range in her neck on the right

> side. She wants her to get therapy once a week and also wants my

> daughter to get a DOC.

> I really need advice. We are taking her to the doctor today to

talk

> with him about it. I don't know whether to take the conservative

> approach that he is going to want me to do or do the band.

> According to the charts and graphs that the therapist showed to me

my

> daughters plagiocephaly is too severe to have repostioning therapy

> work. I don't want to do the wrong thing and regret it later. If

> anyone has advice, I would love it. Sorry this is long.

> Thank you,

>

October 5, 2004

Hi ,

You can see a severity assessment graph in our links section too. I

would agree that if your daughter is moderate/severe and has neck

involvement than a band is the way to go. The sooner you get her

into it the faster and better correction she'll get. You'll also

want to contact your ped or local early intervention to have her

neck evaluated. She'll probably need stretching exercises. Cranial

Tech also offeres free consults if you live close enough to one that

you'd be interested. If you're looking for a comparison, my

daughter was diagnosed as severe and her pics are in the

photos/before and after/DOCband/Hannah B section.

, mom to Hannah, DOCgrad 7/29

Cape Cod, Ma

>

> Hi everyone. My daughter is 3 months old. On our 2 month visit

to

> the doctor, the first thing that he told me when he first looked

at

> her was that the asymetry of her head would go away. Now this

> weekend we were at a dinner where a relative who is a pediatric

> physical therapist was there. She held my daughter and right away

> came over to me and expressed concern. she said that she had been

to

> a seminar on heads. She even went and got literature out of her

> car. She feels that my daughter has moderate to severe

> plagiocephaly. Looking at the pictures that she has, I would

agree.

> She also said that my daughter has neck involvement. My daughter

is

> always looking to the left. She will follow something to the

right

> with her head, but goes right back to the left. The therapist

said

> that my daughter does not have full range in her neck on the right

> side. She wants her to get therapy once a week and also wants my

> daughter to get a DOC.

> I really need advice. We are taking her to the doctor today to

talk

> with him about it. I don't know whether to take the conservative

> approach that he is going to want me to do or do the band.

> According to the charts and graphs that the therapist showed to me

my

> daughters plagiocephaly is too severe to have repostioning therapy

> work. I don't want to do the wrong thing and regret it later. If

> anyone has advice, I would love it. Sorry this is long.

> Thank you,

>

November 27, 2004

Hi! I am not quite sure what bossing means. Can someone please tell

me? From what you wrote it sounds like it means that your daughter

has a wider head than normal and her head comes out past her ears on

each side... is that right? My son's ear to ear width is larger than

his forehead to back length. His cephalic ration started at 101%. It

was 97% after his 1st band. Now he is in his 2nd band. If you don't

know about this ratio a normal one I think something like 80%. I

can't remember the exact number. If someone does please tell

me....But anyway, in other words, 's head was much wider from

side to side than it was from front to back. He was very flat in the

back also, and his height got much higher in the back. His height

problem has gotten better, and his flattness has rounded out alot!

The only thing now that still bothers me is the wideness of his head.

They say it has been held so I guess it is better than before, but it

still looks pretty wide to me. We can't expect perfection though. I

am just thrilled with the progress has had! Let us know about

your daughter. When is her casting, and what state are you in?

Marcy and (7 1/2 months) in New Jersey

2 months in DOC band # 1 to correct mild assymetry

Now in Doc band #2 to correct Brachycephaly

--- In Plagiocephaly , " sujatams " <sujatams@y...>

wrote:

>

> Hi my daughter is exact seven months old now.

> She has bossing coming out near her both ears. Next week we are

going

> to fit her DOC band. Her ear to ear width is larger than forehead

to

> back length. Does anyone has this kind of situation? if yes then

will

> those bossing will flaten out once she ia in DOC band?

>

> Please let me know.

>

> Thanks.

November 27, 2004

Hi Welcome to the group. It sounds like your daughter has brachycephaly. Where the flatness is across the back of the head making it wider than it is long. The DOC band will hold the width of her head while allowing the length to catch up. Tthey can't squish the width in but they can hold it. It'll get a more uniform appearance and shape. Please keep us posted. I'm sure some of the brachy parents will chime in.

mom to na

DOC Grad 2/04

SCsujatams <sujatams@...> wrote:

Hi my daughter is exact seven months old now.She has bossing coming out near her both ears. Next week we are going to fit her DOC band. Her ear to ear width is larger than forehead to back length. Does anyone has this kind of situation? if yes then will those bossing will flaten out once she ia in DOC band?Please let me know.Thanks.For more plagio info

November 27, 2004

Bossing is like bulging or prominent areas. Plagio kids usually have bossing in the forehead area on the same side as the flatness. Brachy kids essentially have bossing near the ears or the top of the head. Does that make sense?

mom to na

DOC Grad 2/04

SCcowtroy8 <cowtroy8@...> wrote:

Hi! I am not quite sure what bossing means. Can someone please tell me? From what you wrote it sounds like it means that your daughter has a wider head than normal and her head comes out past her ears on each side... is that right? My son's ear to ear width is larger than his forehead to back length. His cephalic ration started at 101%. It was 97% after his 1st band. Now he is in his 2nd band. If you don't know about this ratio a normal one I think something like 80%. I can't remember the exact number. If someone does please tell me....But anyway, in other words, 's head was much wider from side to side than it was from front to back. He was very flat in the back also, and his height got much higher in the back. His height problem has gotten better, and his flattness has rounded out alot! The only thing now that still

bothers me is the wideness of his head. They say it has been held so I guess it is better than before, but it still looks pretty wide to me. We can't expect perfection though. I am just thrilled with the progress has had! Let us know about your daughter. When is her casting, and what state are you in?Marcy and (7 1/2 months) in New Jersey 2 months in DOC band # 1 to correct mild assymetry Now in Doc band #2 to correct Brachycephaly> > Hi my daughter is exact seven months old now.> She has bossing coming out near her both ears. Next week we are going > to fit her DOC band. Her ear to ear width is larger than forehead to > back length. Does anyone has this kind of situation? if yes then will > those bossing will flaten out once she ia in DOC band?> > Please let me know.>

> Thanks.For more plagio info

November 28, 2004

Hi there

Yes, that bossing odes sound like brachycephaly, and although it

isn't as common as plagio, there are several people here whose

babies have been or are being treated for it. I'm not sure whether

the bossing will flatten out, as I think the DOCband can only hold

these areas preventing them from growing further, but the back will

grow out significantly, so they won't be so noticeable or prominent.

The good news is that you have got in there nice and early. Brachy

can take longer than plagio to treat as you are growing out the

whole back of the head. At that age you should see great correction

and I've no doubt your little one will look better after treatment.

Another site you might like to look at is Toby's brachycephaly pages

http://www.the-kerrs.co.uk/

Click Toby and then Toby's brachycephaly pages

He's currently having treatment in the UK for brachy (he has a

STARband) which is going well (though he was older than your little

one, not starting til 10 months), but there's comprehensive details

about brachy there and I'm sure you'll relate to his story.

Good luck with the band

Hannah (mum to Lucia, London, UK)

Cranio grad

--- In Plagiocephaly , " sujatams " <sujatams@y...>

wrote:

>

> Hi my daughter is exact seven months old now.

> She has bossing coming out near her both ears. Next week we are

going

> to fit her DOC band. Her ear to ear width is larger than forehead

to

> back length. Does anyone has this kind of situation? if yes then

will

> those bossing will flaten out once she ia in DOC band?

>

> Please let me know.

>

> Thanks.

November 28, 2004

Hello and welcome to the group.

Like already said, the band will hold the width from getting

any worse, but will not squish it in. The band will fill out other

areas making it less noticable, and I have heard many parents here

being very happy that they treated their child's brachy.

Sandy Willow's mom

--- In Plagiocephaly , " sujatams " <sujatams@y...>

wrote:

>

> Hi my daughter is exact seven months old now.

> She has bossing coming out near her both ears. Next week we are

going

> to fit her DOC band. Her ear to ear width is larger than forehead

to

> back length. Does anyone has this kind of situation? if yes then

will

> those bossing will flaten out once she ia in DOC band?

>

> Please let me know.

>

> Thanks.

November 29, 2004

I see you've already had some great responses regarding the

DOCband's ability to treat your daughter's brachycephaly. If you

check out our photos/before and after/DOCband, you will probably be

able to find a baby w/a similar headshape. Good luck!

, mom to Hannah, DOCgrad

Cape Cod, Ma

http://hannahsnoggin.typepad.com/hannahs_noggin/

--- In Plagiocephaly , " sujatams " <sujatams@y...>

wrote:

>

> Hi my daughter is exact seven months old now.

> She has bossing coming out near her both ears. Next week we are

going

> to fit her DOC band. Her ear to ear width is larger than forehead

to

> back length. Does anyone has this kind of situation? if yes then

will

> those bossing will flaten out once she ia in DOC band?

>

> Please let me know.

>

> Thanks.

May 16, 2005

Hi there,

I have been like this for three years.......The dreams for me comes when

i take painkillers to close to bed time.

I am still waiting for relief....My mind is going crazy.......

hugs,

Corinne

along302003 wrote:

> Hi guys

>

> I could use some help I told you guys a couple of weeks ago about the

> fatique and achiness. Well this is still going on. but I am also

> having trouble sleeping at night I am having dreams of me progressing

> to the point I cann't hardly move. Is this normal to be having dreams

> like this or should I talk to the doctor. Also the doctor said he

> would up my medicine anytime I told him I need it I am wondering if

> I should do that to help with the pain adn everything. Thanks for any

> help I have to go now talk with you later

>

> Thanks

> Angie

>

May 16, 2005

Angie,

I too have pain and fatigue daily and now dread going to sleep because I am

in pain there as well. I don't know, but I guess it is just this terrible

disease. I would talk to your doctor and see if there is some other type of

medication you could try or he could increase the doses of the meds you are

already

on.

Hang in there, I hope you are feeling better soon.

Sandie

May 16, 2005

Angie,

It is normal to worry about RA progressing, especially when you know

there is a chance that it could.

I would think that this worry is interfering with your sleep. Worry

causes stress and stress causes the disease to flare.

Have you read anything about meditation or relaxation techniques? When

I can't shut my mind off at night, I take my

mind to the beach and listen to the sounds of the waves and I can even

" smell " the salt air. Is there anything that

you can think about that could help you to concentrate on pleasant

things? They sell CD's that have all kinds of relaxing sounds.

If you can get good sleep at night, maybe it would help the fatigue.

If I don't sleep well, I'm more tired than normal the entire day.

Fatigue is part of my life that I've learned to live with, but there

are things you can do to help with fatigue. Getting a good night sleep

and reducing stress were the most important things for me. If your

disease isn't under control, your meds may have to be increased.

Are you on pain meds?

a

On May 16, 2005, at 5:57 AM, along302003 wrote:

> Hi guys

>

> I could use some help I told you guys a couple of weeks ago about the

> fatique and achiness. Well this is still going on. but I am also

> having trouble sleeping at night I am having dreams of me progressing

> to the point I cann't hardly move. Is this normal to be having dreams

> like this or should I talk to the doctor. Also the doctor said he

> would up my medicine anytime I told him I need it I am wondering if

> I should do that to help with the pain adn everything. Thanks for any

> help I have to go now talk with you later

>

> Thanks

> Angie

>

May 16, 2005

So sorry that you are still having such a terrible time, Angie. Please call

your physician! Tell him everything you told us.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] need advice

> Hi guys

>

> I could use some help I told you guys a couple of weeks ago about the

> fatique and achiness. Well this is still going on. but I am also

> having trouble sleeping at night I am having dreams of me progressing

> to the point I cann't hardly move. Is this normal to be having dreams

> like this or should I talk to the doctor. Also the doctor said he

> would up my medicine anytime I told him I need it I am wondering if

> I should do that to help with the pain adn everything. Thanks for any

> help I have to go now talk with you later

>

> Thanks

> Angie

June 26, 2005

> was wondering if anyone could help me...

> ok for a little over 2 months i have had loose watery bright yellow

> stools and now they have changed to orange colored, along with pain in

> sides and back on both sides also excessive heartburn.

This sounds like my son's bms when he ate orange foods, even with

enzymes. Especially carrots, oranges, egg yolks, cantalope. Do you

eat those foods? Try removing all orange foods, see if that helps.

Dana

June 29, 2005

Namrata,

Wow you are in a pickle! Welcome to the group by the way!

Ladies correct me please if I'm wrong on this stuff!

1)your pediatrician should be able to tell you if he/she thinks the

plagio is bad enough, which it sounds like he already has since he

suggested CT.

2)From what I believe Starband is FDA approved as well. DOCbands are

only done by Cranial Tech, which is the only place available that

specializes only in cranial bands. Starbands are usually done by

facilites that also do other things such as orthotics/prothestics.

Cranial Tech is the only facility that has their orthos go through

extensive training. So if you choose another facility you need to

make sure the ortho treating your son is very experienced as well.

3)That I don't know about!! It would be better to get him in the

band/helmet asap to get some good growth as early as you can! I think

7 months would be the better age to start, but I understand your

concern with your trip. Good luck!

Lacy

Waydon's mom 8 months

DOCband 6/20

--- In Plagiocephaly , " namratajobalia " <jobalia@m...>

wrote:

> Hi, I am very new to this group (just joined today) and am very

> impressed with all the info/support available here. I have a 6.5

> month old baby. He was diagnosed with left torticollis when he was 4

> months old but with the help of PT and doing lots of repositioning

> exercises; torticollis is 95% resolved (as per PT at the last appt

> when he was 5.5 months old). However, the right side of his head is

> quite flat and so he needs treatment. PT has recommended STAR band

> b/c that office is closer to us (would make the 2-week appts easier)

> but pediatrician has recommended DOC band (closest office is 45 mins

> drive but I don't mind it b/c I'm a stay home mom). For now, we've

> got his initial measurements & pictures taken at the CT office (for

> the DOC band) to request approval from our insurance company, BCBS

> of Texas. We're not getting our hopes up though. To add to this

> confusion we have a trip planned to India for 4.5 weeks from

> beginning of Aug till beginning of Sep which would interfere with

> his treatment; in case we opt to get the DOC band. So, all of this

> leads us to the foll questions/options -

> 1) Question 1 - how do we figure out if his plagiocephaly is bad

> enough which NEEDS to be treated with a DOC/STAR band?

> 2) Question 2 - I realize that the DOC band is more widely used than

> the STAR band, is it because the DOC band is FDA approved while the

> STAR band is not..?

> 3) Question 3 - in case we decide to opt for the band/helmet

> treatment, which of the following option is worth pursuing?

> Option 1 - start the treatment in mid-Jul when he is 7 months old

> and reschedule our India trip - advantage of this option is early

> treatment; disadvantage of this option is $350 ticket cancellation

> charge and upsetting parents who are looking forward to meeting the

> new baby

> Option 2 - start the treatment after we return from India in mid-Sep

> when he is 9 months old - advantage of this option is saving on

> ticket cancellation charges and ability to see family in India;

> disadvantage of this option is starting the treatment later and so

> unsure of reaping the complete benefit of the treatment

>

> Question 3 is the most important & confusing one

>

> Any help would be greatly appreciated. Thanks in advance

>

> Namrata (confused, worried, 1st time mom)

June 29, 2005