New here

[Guest guest]

My daughter also had problems with food with texture. She would only eat

bread and cheese and the ONLY meat she would eat was chicken nuggets. Which

I always thought it was odd how she could eat fried chicken nuggets but not

soft other pieces of chicken. When she did try to eat anything else she

would gag and throw up. At 2.5 yrs she was still eating stage 2 baby foods.

On her 3rd birthday checkup she finally hit 20 pounds. Her pediatrician

had her on PediaSure but I still wanted to see her eat real food. You can

imagine sitting at a restraunt with a nearly 3 yr old and pulling out the

baby food jars..argh She started oral exercises with a new therapist this

summer and now she is still really picky but can eat what she wants and no

more throwing up. They did these special massages starting with her gums

and then on into her mouth. Also lots of work with a Crest SpinBrush. She

still gags if you touch the roof of her mouth right behind her front teeth

but that is getting better.

I would suggest letting her pick out a SpinBrush (electric toothbrush, a

Crest one is like $6) and just letting her play with it. My daughter would

just sit at times and watch cartoons and use it in her mouth.

Hannah , mom to LeAnne (3yrs, 4mths) and (5yrs, 4 mths)

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

> I'm writing today to let u all know that I hve started Craig on the PRO-EFA

> tablets that I hve read about on this mailing list. Don't know what to

> expect, so I'm frightened as well as being excited.

Welcome Gillian! I am new to the list too, but have already found so much

useful information. I just ordered samples of the pro-efa and feel the same

way you do. I just hope I can get them into her!

Karla

SAHM to

Jackie, , Jenna and Kamryn

Visit the kids sites:

<A HREF= " http://jackierenee88.homestead.com/Jackie1.html " >Jackie</A> <A

HREF= " http://jackierenee88.homestead.com/1.html " ></A> <A

HREF= " http://jacjoejensplace.homestead.com/JennasPage.html " >Jenna</A> <A

HREF= " http://jacjoejensplace.homestead.com/NewBaby.html " >Kamryn</A>

[Guest guest]

Hi,

I've checked in Boots and can't find Pro-Efa - only Efamol. Please can you

advise me where I get pro-efa from? Who makes them?

Thanks

Mgt

[Guest guest]

I am not sure what boots is but i get my proefa from shop in service and

there is a link for them at our apraxia site located at http://www.apraxia.cc

When you go to the first page of the site, go down and click on " duckie

index. " Then you will get to another page. Go down to about the 9th duckie

and click on the info about the essential fatty acids/proefa. I use the

proefa since after using efalex for about a year I saw a behavorial positive

(no teeth grinding anymore) but nothing with speech. Proefa brought on

progress with finally having a few purposeful words said every day and I had

prayed, " God please just give me one word. " I still pray but it is for more

progress. Let me know if you can't find it. Oh, and it is made by Nordic

Naturals who is out of California I believe.

Carolyn

[Guest guest]

> I've checked in Boots and can't find Pro-Efa - only Efamol. Please can you

> advise me where I get pro-efa from? Who makes them?

Here is a link:

http://www.shop-in-service.com/proefa.htm

Karla

SAHM to

Jackie, , Jenna and Kamryn

Visit the kids sites:

HREF= " http://jackierenee88.homestead.com/Jackie1.html " >Jackie

HREF= " http://jackierenee88.homestead.com/1.html " >

HREF= " http://jacjoejensplace.homestead.com/JennasPage.html " >Jenna

HREF= " http://jacjoejensplace.homestead.com/NewBaby.html " >Kamryn

[Guest guest]

Hi Gillian

Welcome to the group. My son is also pdd and has alot of communication

problems. You will love this group. I have not been here long but I know

already that everyone here is quite knowlegeable about a variety of things and

you can find a lot of support and love here too. No worries, you are in good

hands here.

Love Stacey

>Just thought I would introduce myself - I've been reading yr postings since

>I joined yr mailing list & found them to b quite useful. My name is Gillian

>McKay & my son Craig (4.5yrs) has been diagnosed with " autistic tendancies " .

>He attends pre-school nursery and is due to start school in August this

>year. Craig is a great wee boy with plenty love & affection to share. His

>only problem is his lack of speech & communication. I am currently in the

>early stages of PECS which is being supervised with his speech therapist at

>nursery.I'm writing today to let u all know that I hve started Craig on the

>PRO-EFA tablets that I hve read about on this mailing list. Don't know what

>to expect, so I'm frightened as well as being excited. Will let u all know

>how we r getting on.

>Love,

>Gillian McKay (from Scotland)

[Guest guest]

try the apraxia website or try www.nordicnaturals.com

Re: [ ] New here

Hi,

I've checked in Boots and can't find Pro-Efa - only Efamol. Please can you

advise me where I get pro-efa from? Who makes them?

Thanks

Mgt

[Guest guest]

Hi Celeste,

Welcome to the group and post congratulations on your twin daughters!! My son was dx with torticollis and also developed plagio. Can you tell me a little bit more about your situation: how often do you stretch her? What types of stretches are you doing? Is she seeing a professional pt? Have you checked into the support group, torticolliskids or www.torticolliskids.org? They are a great source of tips and info! Keep in mind that tort is not a quick fix, it takes a lot of time and hard work. Some children, very rarely, do not respond to physical therapy and surgery is considered as a last result around age 2. This is extremely rare though, so if you have not talked with a professional pt, please do so asap. It took a good 3 months for us to see results, so hang in there if its been less time. Let me know if I can help you with any questions, I would be happy to. I will attach a link to show you some of the exercises and holds that are very helpful. You can also email me at rella1234@.... Don't worry- between this group and the tort group, all your questions will be answered!

' Mom

Stretches/ holds

[Guest guest]

Hello Celeste and welcome! I'm glad you have joined the group. I hope you

will let us know how your second appointment goes and if you were able to get

an RX for the band or helmet. Do you know if you will be using a locally made

helmet, DOCband or STARband? We have people in this group who have used each

of these types of helmets/bands so no matter which way you go you should be

able to get all sorts of support and advice!

did not have tort so I cannot help you with that one, but I see that

has emailed you and she is an outstanding source of information about

tort!

I hope you will share more of your story throughout the days and weeks to

follow. I think you will find this group to be an outstanding source of

support, advice and friendship. Welcome!

Marci (Mom to )

Oklahoma

[Guest guest]

Hi Celeste & welcome to our group!

We're glad to have you with us! You said Madison had her 2nd appt

today with the neuro., how'd that go? Did he write you an RX for a

helmet/band? Is Madison the only one of your twins who will be

needing a helmet or will they both? Is she the only one with

torticollis too? Has she been going to Physical Therapy for neck

exercises? Gee, 21 questions huh?? LOL Sorry!

My daughter did not have tort., but a lot of our members children

have had it, I am sure some of them will offer you helpful stretching

tips. There is also a torticollis support group from as well,

you could also check in with that group for help.

Welcome again, we look forward to getting to know you & your

daughters in the coming months.

Debbie Abby's mom DOCGrad

MI

> Just wanted to introduce myself. My name is Celeste and I live in

> Arizona I have twin daughters soon to be 8 months old. There names

> are Madison and MacKenzie. Madison has a second appt today with

her

> neuro surgeon. I am hoping that she gets fitted for her helmet

very

> soon. The neck exercises have not done anything for her head or

> neck. I am just looking for some advice and help through this.

Wish

> me luck and I look forward to hearing from everyone.

[Guest guest]

Hi Celeste and welcome to the group! I'm the proud mom of twins

also! In fact, both of my twins were just about 8 months old when

they were fitted for their STARband. The average length of time for

wearing the bands is usually about 4 and a half months, but it all

depends on the child and how many growth spurts they hit while in the

band. My son, Danny, only needed to wear his band for 3 months,

while my daughter Kaylie needed her's for 4.

I'm really glad to see that you have gotten some tips already

regarding neck stretches and excercises for the tort. (Isn't

great!) Getting the tort addressed will help with the plagio.

You are very fortunate to be living in Pheonix where there is a

Cranial Tech location nearby you. Many of the members here have to

travel quite distances for a DOCband. I personally have not used the

DOC, but I have heard many wonderful things about it during the year

that I have been a member here. Cranial Tech might even be able to

help you with any insurance quandries that you have. Since your

doctor told you to be prepared to fight with your insurance, did he

happen to give you a letter of medical necessity, that will help

tremendously! Who do you have for insurance, maybe a member or two

might have the same company and can let you know what was covered and

what wasn't.

Good luck to you Celeste and Madison too! We're glad to have you

with us! Keep us to date.

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> Just wanted to introduce myself. My name is Celeste and I live in

> Arizona I have twin daughters soon to be 8 months old. There names

> are Madison and MacKenzie. Madison has a second appt today with

her

> neuro surgeon. I am hoping that she gets fitted for her helmet

very

> soon. The neck exercises have not done anything for her head or

> neck. I am just looking for some advice and help through this.

Wish

> me luck and I look forward to hearing from everyone.

[Guest guest]

Hi Celeste. I'm Ana. Also new here. I just took my son to Cranial

Technologies in Dallas last Thhursday. We have an appointment

tomorrow to learn our exercises for tort. I have spoken extensively

with the ladies of CT regarding insurance. They have submitted to my

insurance company for pre-approval. They said that there are times

when the insurance company will not cover as much if you begin

treatment before it has been pre-approved. Anyway, it seems like the

insurance companies really stink when it comes to this treatment. I

guess my point is, call CT and asked them how they can help you. They

deal with these companies everyday and can tell you how they react in

most cases. Unfortunately for me, United Helath Care is not one of

the better companies in providing coverage for the DOC band. But

we'll see. And we have prepared ourself for a fight. Also, we plan to

begin treatment with a week, reagardless of what the insurance

company says, we just want to give the pre-approval a shot first. CT

in Dallas advised that to begin treatment, they require a $600 down

payment and a payment plan of $600 a month. But she said the payment

plan could be adjusted depending on your needs. And any monies paid

by the insurance company will be applied to the balance, with any

overage returned to you.

Hope that helps! I'm working through the same issues as you! I'm

really excited to be here.

Ana

[Guest guest]

Welcome to a wealth of information and a great group of people.

Juli

Mom to 13, Kaitlyn 8, Keara 2

[ ] new here

Hi everyone. I just wanted to introduce myself. My name is Jeanette and I

live in New Jersey with my husband and four children. I have to thank Joann

(whose son goes to school with mine) for telling me about this group.

My daughter Becky (7)developed normally. My son, (3), was first

diagnosed with PDD-NOS but recently was correctly diagnosed with verbal and

oral apraxia and sensory integration disorder. My twins, Meg and Mandy(2),

both have speech delays.

I am very eager to learn as much as I can about apraxia.

Jeanette

mom to Becky 7

3

Meg and Mandy 2

[Guest guest]

Hi and welcome. I'm from the Oklahoma City area - Norman to be exact.

We saw Dr. Francel at University Hospital and received our helmet from Bill

Barringer. We had a CT scan done first to rule out cranio and then got casted

for the helmet.

Who are you seeing for treatment and what kind of helmet/band are you

getting? I'm sure everything will go well with the CT scan on Monday, but

please do let us know how it goes.

Good wishes your way!

Marci (Mom to )

Oklahoma

[Guest guest]

Hi - welcome to the group. Wishing you lots of luck for your

appointment.

regards

Kerry

Marcus (3)Dylan(1)

Calgary,AB

>From: " lwalker1969 " <rwalke11@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: new here

>Date: Tue, 02 Apr 2002 22:45:22 -0000

>

>Hello everyone! I am new to the group. My daughter McKenna was

>diagnosed with torticollis at 2 months of age. She is now 5 months.

>The left side of her head was also very flat with a lump on the right

>side. We have been seeing a pt every other week along with

>stretching, strenghtening, and repositiong. The tort is really

>improving. I wish I could say the same about her head. She had one

>eye smaller than the other. She would barely open the eye the first

>couple of months. Little did we know what was in store for us.

>Luckily her eye has improved. We go for a CT scan on Monday to rule

>out cranio. If everything goes well we will see a neurosurgeon and

>then get fitted for a helmet. Please keep us in your thoughts that

>everything goes well.

>

> (mother to McKenna- 5 months and Riley- 4years)

>Tulsa, Oklahoma

>

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

Welcome to group . Make sure you let us know how your appt

goes. My daughter just got fitted for her helmet yesterday. She

also has tort.

Celeste, Arizona, Mom to Madison

> Hello everyone! I am new to the group. My daughter McKenna was

> diagnosed with torticollis at 2 months of age. She is now 5

months.

> The left side of her head was also very flat with a lump on the

right

> side. We have been seeing a pt every other week along with

> stretching, strenghtening, and repositiong. The tort is really

> improving. I wish I could say the same about her head. She had

one

> eye smaller than the other. She would barely open the eye the

first

> couple of months. Little did we know what was in store for us.

> Luckily her eye has improved. We go for a CT scan on Monday to

rule

> out cranio. If everything goes well we will see a neurosurgeon and

> then get fitted for a helmet. Please keep us in your thoughts that

> everything goes well.

>

> (mother to McKenna- 5 months and Riley- 4years)

> Tulsa, Oklahoma

[Guest guest]

Hi & welcome to our group!

It sounds like you have everything rolling along nicely in getting

your daughter's conditions resolved. McKenna is at a perfect age IF

you get her into a helmet. That's great her tort. has improved with

phys. therapy.

Best of luck with the CT scan next Monday. You will be in my

thoughts. I have my fingers crossed the cranio results will be

negative, that will be a huge relief for your family.

Please keep us updated & be sure you let us know the CT results.

We're glad you have joined us!

Debbie Abby's mom DOCGrad

Michigan

> Hello everyone! I am new to the group. My daughter McKenna was

> diagnosed with torticollis at 2 months of age. She is now 5

months.

> The left side of her head was also very flat with a lump on the

right

> side. We have been seeing a pt every other week along with

> stretching, strenghtening, and repositiong. The tort is really

> improving. I wish I could say the same about her head. She had

one

> eye smaller than the other. She would barely open the eye the

first

> couple of months. Little did we know what was in store for us.

> Luckily her eye has improved. We go for a CT scan on Monday to

rule

> out cranio. If everything goes well we will see a neurosurgeon and

> then get fitted for a helmet. Please keep us in your thoughts that

> everything goes well.

>

> (mother to McKenna- 5 months and Riley- 4years)

> Tulsa, Oklahoma

[Guest guest]

Hi and welcome!

Glad to hear about all the wonderful treatment your daughter has been

receiving. It's great that she has already made some improvement. I hope that

the casting goes well on Monday (I'm sure it will). I look forward to hearing

more about the different types of therapy that your daughter is receiving.

It's great to know that there is more then one type of therapy option that

can be explored!

Good wishes to you and welcome to the group!

Marci (Mom to )

Oklahoma

[Guest guest]

Hi & welcome to our group!

We're glad to have you with us all! Let me say what a terrific mom

you sound like! Your daughter is very lucky to have such a devoted

mommy!

Sounds like things are going wonderfully thus far, especially with

her torticollis.

I am curious to hear more abut the Craniocap she'll be recieving. Do

you know if it is an active style band or helmet? Active meaning it

applies slight (not felt by the baby) pressures to the non flat side

of the child's head to help push out the flatter area? Or is it more

a passive design? Meaning it simply allows a gap in the flat area of

the head to allow room for the head to grow into. Is it a full

helmet or a band?

We have other members who are also using cranial sacral therapy, a

lot of people inquire about it as well.

I am sure you are very relieved to know she will not be needing

surgery for her muscle!

Welcome again to our group - we look forward to getting to know you &

your daughter in the mos to come as her head rounds! Best of luck

with the casting next Monday - be sure you let us know how it goes.

Debbie Abby's mom DOCGrad

MI

> Hi everyone:

> I am , mom to Rhiannon from St. MN. My now 3 month old

> daughter was diagnosed with torticollis at 1 week old by our

> Chiropractor. Unfortunately, our pediatrician was not concerned

with

> her neck and told me her head would " round out " . Not being one to

> wait around, I called all the hospitals in the area and found Dr.

Wood

> (a plastic surgeon and inventor of the Craniocap) at Gillette

> Children's in St. (and Minnetonka). He diagnosed her with

severe

> torticollis and plagiocephaly and entered us into pt. We love our

> therapist, Sue and see her 1x per week. Since I am a believer in

> holistic medicine (meaning to use all resources from conventional

> medicine to alternative therapies to ensure a well-rounded

treatment),

> I also bring her to a cranial-sacral therapist 1x per week and a

> cranial osteopath 2x per week. My experience has been that the

> cranial-sacral therapist " calms " her muscles (her olive-sized mass

in

> her scm muscle was gone after one therapy! I don't know why or

> how...); the cranial osteopath gets her cranial bones to move in

the

> right direction, so we are getting a jump on the helmut therapy,

and

> of course the PT checks progress on the scm muscle and makes sure

her

> development is on track. I am very happy with the " team " of

> therapists that we are seeing and Rhiannon is showing great

> improvement! We just found out she will not require surgery on her

> SCM muscle - something that had looked to be inevitable when we

first

> started her treatment at 6 weeks old. She now sits straight up - no

> tilt!!

> Next Monday she will be taking her mold for her Craniocap, and we

> expect to have it around tax-time.

>

> I have been reading some of the discussions, and am very encouraged

to

> read that her ear alignment and facial asymetry (sp?) will

improve! I

> look forward to joining in on discussions and sharing my experience

> with others, as well as taking in the information that you all have

to

> share.

>

> Ciao!

> - Rhiannon's mom in St. MN

[Guest guest]

,

Welcome to the group. You are not alone in your concern, many of us have

walked that path of figuring out what is happening here. My son was dx with

tort at 2 mnths and to make a long story very short, was in the DOC band by 5

months with great results. I know all about MRI's, physical therapy, the DOC

band, the facial asymmetry, the head tilt- it can be so overwhelming at

first- but I just wanted to let you know, as I am now at the end of the

journey you are embarking on, that it will get easier and little Makenna will

do just fine with your hard work and determination on her side. My son also

had the smaller eye, the puffier cheek, the ear misalignment, and we are

happy to say that it is resolved. Give this time and dedication, and you too

will see a happy ending. I prayed to God A LOT, during this time, and I am

praying for you as well- you can do it! Hang in there! Put in lots of

stretching (as much as you can- its hard- we have lives going on that don't

seem to make it easy I know), and use massage- the helmet will take so much

stress off of you worrying about that flat spot so that you can focus your

efforts on the tort!

All the best,

' Mom

[Guest guest]

,

Welcome to the group! It sounds like your daughter is in great hands-YOURS-

as you have sought out the right people to get where you need be with your

daughter's tort and plagio. Good work!! You will be a great source of

information for other parents going through the same experience! Thanks for

sharing! Please keep us posted on Rhiannon's progress!

' mom (tort resolved, DOC grad)

[Guest guest]

Hi ,

Welcome to the group! Sounds like you're getting all

the help you could possibly get! Good luck with the

Craniocap. Let us know how things are going.

Helen and

--- stinamom21 <dweston6587@...> wrote:

> Hi everyone:

> I am , mom to Rhiannon from St. MN. My

> now 3 month old

> daughter was diagnosed with torticollis at 1 week

> old by our

> Chiropractor. Unfortunately, our pediatrician was

> not concerned with

> her neck and told me her head would " round out " .

> Not being one to

> wait around, I called all the hospitals in the area

> and found Dr. Wood

> (a plastic surgeon and inventor of the Craniocap) at

> Gillette

> Children's in St. (and Minnetonka). He

> diagnosed her with severe

> torticollis and plagiocephaly and entered us into

> pt. We love our

> therapist, Sue and see her 1x per week. Since I am

> a believer in

> holistic medicine (meaning to use all resources from

> conventional

> medicine to alternative therapies to ensure a

> well-rounded treatment),

> I also bring her to a cranial-sacral therapist 1x

> per week and a

> cranial osteopath 2x per week. My experience has

> been that the

> cranial-sacral therapist " calms " her muscles (her

> olive-sized mass in

> her scm muscle was gone after one therapy! I don't

> know why or

> how...); the cranial osteopath gets her cranial

> bones to move in the

> right direction, so we are getting a jump on the

> helmut therapy, and

> of course the PT checks progress on the scm muscle

> and makes sure her

> development is on track. I am very happy with the

> " team " of

> therapists that we are seeing and Rhiannon is

> showing great

> improvement! We just found out she will not require

> surgery on her

> SCM muscle - something that had looked to be

> inevitable when we first

> started her treatment at 6 weeks old. She now sits

> straight up - no

> tilt!!

> Next Monday she will be taking her mold for her

> Craniocap, and we

> expect to have it around tax-time.

>

> I have been reading some of the discussions, and am

> very encouraged to

> read that her ear alignment and facial asymetry

> (sp?) will improve! I

> look forward to joining in on discussions and

> sharing my experience

> with others, as well as taking in the information

> that you all have to

> share.

>

> Ciao!

> - Rhiannon's mom in St. MN

>

>

__________________________________________________

[Guest guest]

Hi Debbie:

Thanks for the clarification. Rhiannon is 3 months old, and we've been in PT since she was 7 or 8 weeks (it's hard to remember without looking it up on my calendar.) Thanks for the well wishes for Monday. Surprisingly, I'm not feeling nervous yet - but I am prepared to stay strong and calm for Rhiannon's sake - I hope to save my tears for when it's over and she's napping, but we'll see. Again, thanks for the info and reassurance.

Kind regards,

, Rhiannon's mom.

Re: Fw: Re: New here> > > ,> > Sounds like a passive device from the description. My daughter used a passive > helmet as well and we had very good luck with it. The craniocap sounds like a > really good product and hopefully Rhiannon will get great results!!> > Marci (Mom to )> Oklahoma> >

[Guest guest]

To Debbie, Abby's mom:

Oops - I just noticed that I replied to previous emails to you as Abby, your little daughter. I apologize. I just get reading all the info so quickly that I made that mistake. Sorry!

, Rhiannon's mom

Re: Fw: Re: New here> > > ,> > Sounds like a passive device from the description. My daughter used a passive > helmet as well and we had very good luck with it. The craniocap sounds like a > really good product and hopefully Rhiannon will get great results!!> > Marci (Mom to )> Oklahoma> >

[Guest guest]

:

It is true that " older " babies usually get better results with

an " active " band, mainly becuz " active " bands help push things along

a bit faster than a passive style helmet does. But that doesn't mean

it won't work. How old is Rhiannon again? Good luck Monday - let us

know how it goes

Debbie Abby's mom DOCGrad

MI

> Hi Marci:

>

> You are right. Last night I took another look at the brochures and

website, and it clearly states that it is a passive device. Of

course, then I wanted to know the difference and started looking

around on the web. If I understand it clearly, it seems children who

are a bit older get better results with an active device? Any

clarifications out there?

>

> Thanks Marci - I am very hopeful that Rhiannon will get good

results as we have seen so much improvement already through

positioning and her osteopathic treatments. I have been reading

lately on this site about the sweating and not being able to snuggle

like I used to, and those things will be hard. But, I just keep

reminding myself that her future is in my hands, and it is up to me

to be sure that I can do everything I can for my beautiful baby to

make her life tilt and plagio free.

>

> Thank you to everyone out there for the tremendous show of support,

not only to me but to all the members. It really makes a difference!

>

> Kind regards,

> , Rhiannon's mom

> Re: Fw: Re: New here

>

>

> ,

>

> Sounds like a passive device from the description. My daughter used

a passive

> helmet as well and we had very good luck with it. The craniocap

sounds like a

> really good product and hopefully Rhiannon will get great results!!

>

> Marci (Mom to )

> Oklahoma

>

>