hello

[Guest guest]

hi im a nurse and the people in th nursing home i worked in use to take your

food formula too as a laxative-charlotte

[Guest guest]

It's good to know that I am not the only one with that idea!! Ha ha:) My son

never knows anythinig is in there unless I add too much. Barb

Re: [ ] Re: hello

hi im a nurse and the people in th nursing home i worked in use to take your

food formula too as a laxative-charlotte

[Guest guest]

Thank you for the information. I will certainly try it!!

[ ] Re: hello

>Thanks ine I will try it. Dana

> Hi Dana

>

> My daughter had the same problem and we where told to try the

following with her.

>

> 1 cup of pineapple

> 1 cop of bran

> 1 cup of pitted dates

> and about half a cup of pineapple juice

> Blend all ingredient's together.

>

> We started Tabatha on 1/4 of a teaspoon for about 3 days if

nothing happens slowly increase the amount until the child goes.

>

> I ended up having to give Tabatha about a soup spoon size before

anything happened but once she did then we decreased the amount that

she need.

>

> Now she has a teaspoon before she goes to bed every 3rd night and

she happily sits on the toilet every morning.

>

> Each child is different so it just a matter of playing around

until you find what works with your child.

>

> The mixture last for about a 10 days.

>

> I have given this recipe to a few of my girlfriends when their

children can't go and it always seems to work and the children like

the taste.

>

> ine

>

[Guest guest]

Sounds great. My phone number is (973) 663-1138. Give me a call and we can

try and set up a playdate or just talk. Dana Millar

> Hello everyone, I was just reading some messages and as always all of

> you are so informative. Just to let you know that I have an almost 4

> year old son with severe apraxia, mild hypotonia,and now presently

> being screened for Sensory Integration Disorder (very orally sensory

> seeking and whole body sensory seeking). Anyway my son was diagnosed

> when he was 2 1/2 and has been in therapy since then. He is currently

> in Preschool disabled in our district, but this year we fought to have

> him placed in preschool inclusion. He is doing well in this setting.

> Also just wanted to ellaborate more about

[Guest guest]

Hi Dana - I have a 3 yr old with PDD and a 4 yr old that sounds like your son.

goes to PG Chambers school in Cedar Knolls. We live in Sparta but do a

lot in the town area. If you would like to contact me off line

(mmcortese2006@...) maybe we can exchange local information or get the

kids together to play.

Regards

Cortese

Dana & Matt <my2boysjm@...> wrote:

Hello everyone, I was just reading some messages and as always all of

you are so informative. Just to let you know that I have an almost 4

year old son with severe apraxia, mild hypotonia,and now presently

being screened for Sensory Integration Disorder (very orally sensory

seeking and whole body sensory seeking). Anyway my son was diagnosed

when he was 2 1/2 and has been in therapy since then. He is currently

in Preschool disabled in our district, but this year we fought to have

him placed in preschool inclusion. He is doing well in this setting.

Also just wanted to ellaborate more about

[Guest guest]

Hi,

Would you please share Dr. Abba Caragan's phone number and if he

took your insurance?

Thank you,

[Guest guest]

Sure, Dr. Abba Cargan. Pediatric Neurology

1122 Route 22 W. 2nd Floor, Mountainside, NJ 07092

Phone (908) 233-5000 Fax (908) 233-5523

Dr. Cargan does not take insurance, my school district paid for his

evaluation. Hope this helps.

Dana Millar

[Guest guest]

Hi,

Would you please share Dr. Abba Caragan's phone number and if he

took your insurance?

Thank you,

[Guest guest]

In a message dated 04/03/2006 19:56:03 GMT Standard Time,

jenneedle0525@... writes:

Hello,I am brand new I just subscribed to this group. My daughter is 4

yrs old and Autistic. She is mostly non-verbal. I have cone all sorts

of testing and she has suggestions of yeast overgrowth among other

things. She was GFCF for 9 months but we stopped due to monetary

reasons. I received a suggestion to start her on enzymes and to leave

her off GFCF.I was thinking of starting her on enzymes. However don't

they have to be given at every meal. She is in a full day program. I

would only be able to give them before breakfast and dinner. Thanks

for your help. I really do not know much about the benefit of enzymes.

>>>hello

Go to s site and have a good read - all is explained there

_www.enzymestuff.com_ (http://www.enzymestuff.com)

Good luck, we stopped diet and swicthed to enzymes with much greater success

Mandi in UK

[Guest guest]

Also, I had my doctor write a note for me to submit to school that he needed

enzymes before his lunch/snacks etc. We have this written into his IEP so

he goes to the nurse, she mixes them in applesauce that I provide and then

goes off to lunch. This is another way to handle school.

After reading on enzymestuff.com, look at Peptizyde or AFP Peptizyde here:

www.houstonni.com this is the enzyme that targets gluten, casein and soy

proteins. We too have GREAT success with them!! Their customer service is

wonderful too. Call them and ask any questions about it too. The best

advice I can tell you is to use begin them low (dose) and slowly increase

until your child is adjusted to them. It too my children about 3 weeks to

adjust to them.

Jackie---

> Go to s site and have a good read - all is explained there

>

> _www.enzymestuff.com_ (http://www.enzymestuff.com)

>

> Good luck, we stopped diet and swicthed to enzymes with much greater

> success

>

>

> Mandi in UK

[Guest guest]

Subject: ( ) hello

hi all i am shell mum of 6 my yougest as autism my 4 year old is bieng

assessed for aspergers

Hi Shell! Welcome to our group! Feel free to join in anytime you like!

Roxanna

[Guest guest]

hey Shell, welcome to this group. I hope you find it as useful as I have!

erica

[Guest guest]

Hi there Elycia,

Welcome to the group! Congrats on your twins!! You never know about

insurance, both of my boys have/had helmets, and the first time with

both of them we were told it wouldn't be covered. If the first time

you get denied, you can always appeal it. There are people on here

very familiar with that process and if it comes to that, will help

you.

Good luck on Tuesday and post when you are done if you find the time!

Kim

mom to 3

Kaela, 11 no issues

Jaxson 2 years 9 mo - wore CranioCap 4.5 months then, at 18 mo had

Craniotomy w/reconstruction of skull to correct plagio

Eli - 9 mo - wore STARband Nov 05- April 06 now waiting arrival of

Hangerband

>

> Hello everyone:

>

> I am new here and wanted to say hello. I have twin girls Mya and

Mia

> and Mya has plagiocephaly. I have an appt. on Tuesday to get her

> measurements, unfortunately, it doesn't appear that our insurance

will

> cover. We will have to see. My doctor sent a letter of medical

> necessity with me and said potentially we can use the fact that

they

> are twins and a restricted intrauterine environment, but I still am

> not sure. I really hope the insurance pans out because since we

had

> the babies we are on 1 income and it has been tough. As you can

> probably imagine, the cost of putting twin infants in daycare will

> stop almost any mother from going back to work.

>

> Anyways, I will let you guys know the outcome. I look forward to

> getting to know all of you parents. So happy to find this group.

>

> Elycia

>

[Guest guest]

Hi Elycia,

Welcome to the group. Who is your insurance company? Maybe someone

here has had some luck with them. Where are you going for treatment?

-- In Plagiocephaly , " elycia_snyder " <u2girl@...> wrote:

>

> Hello everyone:

>

> I am new here and wanted to say hello. I have twin girls Mya and Mia

> and Mya has plagiocephaly. I have an appt. on Tuesday to get her

> measurements, unfortunately, it doesn't appear that our insurance will

> cover. We will have to see. My doctor sent a letter of medical

> necessity with me and said potentially we can use the fact that they

> are twins and a restricted intrauterine environment, but I still am

> not sure. I really hope the insurance pans out because since we had

> the babies we are on 1 income and it has been tough. As you can

> probably imagine, the cost of putting twin infants in daycare will

> stop almost any mother from going back to work.

>

> Anyways, I will let you guys know the outcome. I look forward to

> getting to know all of you parents. So happy to find this group.

>

> Elycia

>

[Guest guest]

Hello welcome to the group. I am a twin mom too. I hope your

insurance comes through for you. Let us know how the measurements

go.

Haylee

mom to andre doc band grad

>

> Hello everyone:

>

> I am new here and wanted to say hello. I have twin girls Mya and

Mia

> and Mya has plagiocephaly. I have an appt. on Tuesday to get her

> measurements, unfortunately, it doesn't appear that our insurance

will

> cover. We will have to see. My doctor sent a letter of medical

> necessity with me and said potentially we can use the fact that

they

> are twins and a restricted intrauterine environment, but I still

am

> not sure. I really hope the insurance pans out because since we

had

> the babies we are on 1 income and it has been tough. As you can

> probably imagine, the cost of putting twin infants in daycare will

> stop almost any mother from going back to work.

>

> Anyways, I will let you guys know the outcome. I look forward to

> getting to know all of you parents. So happy to find this

group.

>

> Elycia

>

[Guest guest]

hi Dana,

Welcome to the group. My oldest will be 3 on the 11th and her cousin

will be 2 on the 12th

na, DOC Grad 2/04

Kiersten, DOC Grad 4/06

www.thefilyaws.com/plagio/plaigo.html

>

> Hey, my name is Dana and I have b/g twins that will be on on June

12th

> my son Nolan did have to wear the helmet he is almost finished with

it

> I do see a difference !!!! I would love to hear from other mothers!!!

>

[Guest guest]

Hi Dana, I have b/b twins who wear starbands. So far they are having

great progress. My boys, and Vedder, have been in helmets since

Feb '06. may be out of his within the next month, not sure with

Vedder. Good luck and welcome to the group.

Sunshine mommie to and Vedder, Starband since 2/16/06 one year

old

>

> Hey, my name is Dana and I have b/g twins that will be on on June

12th

> my son Nolan did have to wear the helmet he is almost finished with

it

> I do see a difference !!!! I would love to hear from other mothers!!!

>

[Guest guest]

--Hi Leah,

I too am a new member and my son is 7 months old. He was diagnosed

with brachycephaly at the neurosurgeons office today.

I feel guilty too, but unlike your peds all along, mine never

mentioned my sons head at all. Evan at his 6 month check up the doc

felt his head and never said a word. At the time I was busy asking

other questions and preparing for the shots so didnt question him.

After a few days though I started thinking about things and realised

that I wanted to go back with them specifically checking his head,

also I had noticed a tightness in his neck, with him favoring one

side. Also, he has never liked tummy time, and always has slept on

his back.

Well, to cut a long story short, if I hadnt have pushed for a second

opinion this would not have been diagnosed. She says its moderate to

severe and we have to get a helmet for him.

Talk about not having faith in the ped. anymore!

Anyway, just wanted to pipe in there and say youre not alone.

Glad to have this website though....

- In Plagiocephaly , leah_black@... wrote:

>

> I am a new member and am just reading all the messages. I

hate

> to be the sourpuss, but I am not near as positive as you all are!

My

> daughter is almost 6 months and was diagnosed with brachycephalic.

> We

> are going to the neurosurgeon on Thursday to see what he thinks.

My

> overwhelming feeling right now is GUILT! As a first time mom, I

did

> not know how important it was to rotate sleeping positions!!!! My

> doctor did notice the back of her head becoming flat at her 2 and

> 4-month check-up, but she did NOT make a big deal about it!!! She

> actually told me at her 4-month check-up that even if I tried

> switching her sleeping position, would probably just end up

on

> her back....so I felt there wasn't much bother in doing it. Well,

> after a trip home to my parents my mother INSISTED I see another

> doctor. She (my mother) is a Labor & Delivery nurse for 30+ years

> and

> had not seen a babies head shaped as 's was. So, I took her

in

> and now am having these terrible guilty feelings that this could

have

> been prevented!!!! Also, am I the only one that does not like the

> looks of the helmets???? In this age of technology, can't there

be

> anything that looks better to the eye? I don't want to sound so

> pessimistic, as I know there are sooooo many other things that my

> angel could have, but I feel this is MY fault!!!! Also, if anyone

> can

> tell me what is soooo bad about the helmets and soooo good about

the

> bands, I would appreciate it. Is it worth traveling 5+ hours for

the

> bands each way? If these bands are soooo good, why aren't they

> available in every city? Sorry to ramble.

>

> If you have the time to look, I have put 's pictures of her

> flat

> head on my website and would appreciate anyone looking at them to

> compare if their child had improvement with a similar looking

head.

> http://www.geocities.com/leah_black/brachy.html

>

> Thank you,

> Leah

>

[Guest guest]

>

> My name is Kate and my daughter is 11 weeks old and her name is

Siena.

> Siena has acid reflux and some tightening in her neck muscles not

> quite torticollis her pt said. The pt also mentioned that she has

mild

> to moderate plagio...so we have been instructed to reposition and

work

> on her neck flexion - and thats going great. Has anyone had any

> success with repo at this age. Being a first time mom I m terribly

> worried. My daughters pediatrician said its nothing he would worry

> about now as she is so young and that so much can change with

> repositioning. I am just trying to get more info.

> Thank you

> Kate

>

Hi Kate!

My son, Logan, has tort. and mild plagio. on the left rear and right

front. We repo'd for 3 months with some definite improvement and it

is a lot of work but worth it. No bouncy seats or swings,limited

car seat time, limited time on the head except to sleep really. For

walks around the block I used a Bjorn carrier instead of the

stroller, and most of our playtime was on his tummy even though he

still HATES it! If he were a girl I MAY have left his head being it

is fairly mild, but being a boy we've decided to go for the DOC Band

to finish off the rest. It just seems lately that although the left

side has rounded out, it isn't quite catching up with the right

side. The band will help where he needs it and I really believe all

the repo. we did has made it so that he won't have to wear the band

for too long and changed him from moderate plagio. to

mild/moderate. Always go with you Mommy Instinct, it can't fail

you. Good Luck to you and your little girl.

Jaclin

Mom to Logan 1.3.06 tort. and plagio

and Jarod 8.21.99

[Guest guest]

Hi Leah,

My name is Kate and my 11 week old daughters name is Siena. I too feel sooooooooooooo guilty i feel like its my fault and i should have been more villigent. Right now we are doing repositioning to try and alleviate the problem, we will see i hope it works as I share your sentiment about the bands, i am not 100 percent convinced but i havent done enough research to reach any conclusions.

I tried to look at your daughters pics but the link cant be found can you resend it?

I hope you and your prescious little girl are doing well

Kate

Kate Trifilettikdtrifilettti@...HM: 303-451-9583CL: 720-206-4060

[Guest guest]

Hi,

I'm new too. Just been here a few days. It does make you second

guess your ped. I mentioned my daughter's head at her 2 month and he

said to wait and see what it looked like at 4 months. He didn't tell

me what I might do to help correct it. I only found this forum after

we went to the neuro. He hasn't even officially diagnosed her with

plagiocephaly. We have to have the CAT scan to make sure it's not

craniosynostosis and go from there. He didn't offer much of anything

and I felt like I was totally unprepared because it was a rush

appointment that someone had cancelled so we had less than 24 hours

to even think about it.

Are you finding it difficult to decide what brand of helmet/band to

choose? Or do you have a choice where you live?

Holly

Avery, 4 mos.

> >

> > I am a new member and am just reading all the messages. I

> hate

> > to be the sourpuss, but I am not near as positive as you all

are!

> My

> > daughter is almost 6 months and was diagnosed with

brachycephalic.

> > We

> > are going to the neurosurgeon on Thursday to see what he thinks.

> My

> > overwhelming feeling right now is GUILT! As a first time mom, I

> did

> > not know how important it was to rotate sleeping positions!!!!

My

> > doctor did notice the back of her head becoming flat at her 2 and

> > 4-month check-up, but she did NOT make a big deal about it!!!

She

> > actually told me at her 4-month check-up that even if I tried

> > switching her sleeping position, would probably just end

up

> on

> > her back....so I felt there wasn't much bother in doing it.

Well,

> > after a trip home to my parents my mother INSISTED I see another

> > doctor. She (my mother) is a Labor & Delivery nurse for 30+ years

> > and

> > had not seen a babies head shaped as 's was. So, I took

her

> in

> > and now am having these terrible guilty feelings that this could

> have

> > been prevented!!!! Also, am I the only one that does not like

the

> > looks of the helmets???? In this age of technology, can't there

> be

> > anything that looks better to the eye? I don't want to sound so

> > pessimistic, as I know there are sooooo many other things that my

> > angel could have, but I feel this is MY fault!!!! Also, if anyone

> > can

> > tell me what is soooo bad about the helmets and soooo good about

> the

> > bands, I would appreciate it. Is it worth traveling 5+ hours for

> the

> > bands each way? If these bands are soooo good, why aren't they

> > available in every city? Sorry to ramble.

> >

> > If you have the time to look, I have put 's pictures of her

> > flat

> > head on my website and would appreciate anyone looking at them to

> > compare if their child had improvement with a similar looking

> head.

> > http://www.geocities.com/leah_black/brachy.html

> >

> > Thank you,

> > Leah

> >

>

[Guest guest]

Hi Leah,

I am pretty new here too, and I know what you mean! I've had some guilt too.

My son

Jerry will be a year old next week, and he only started wearing a helmet a

little over 3

weeks ago. I first noticed his flat head when he was about 8 weeks old, and I

was

mortified. But when I asked his ped about it, he just said not to worry, it

would round out

on its own, that he didn't have any 10-year-old patients with heads shaped like

my son's.

He gave me some repositioning tips, but said that the real progress would happen

once he

started sitting up (i.e. around 6-7 mos). So we repositioned like mad. Then

once he

started sitting up we waited and watched. His head did get better, but it was

still

noticeably assymetric. The final straw that made me insist for a referral was

when we went

in to the doc when Jerry was sick, and we saw a different doc since Jerry's ped

wasn't in,

and I asked the other doc about Jerry's head, and she said flat-out that it

would not get

much better on its own (he was nearly 9 months by this time) (she also said she

didn't

think it was bad enough for treatment). So I got a referral from our ped to a

craniofacial

plastic surgeon. Jerry's had his helmet about 3 weeks and is doing great with

it, and his

head is already looking better. His plagio must have been fairly significant,

since our

insurance gave pre-approval for the helmet, even though they had told me they

almost

never pay for the helmets. Anyway, I do feel a lot of guilt for not doing this

sooner when it

could have been more effective. But what do you do when everyone around you is

telling

you not to worry, that it will get better on its own, and you don't know any

better???? I've

also felt guilty that it happened in the first place, that maybe I didn't hold

him enough and

left him laying on his back too much, etc, etc. The thought I can share with

you is that I

have twins, and they've both had the same amount of holding and time on their

backs and

time in car seats, etc, etc, and only one of them developed plagio. I think

some babies are

just more susceptible than others, and some experience growth restriction in the

womb

that ultimately causes them to favor one side when they come out. There's not

always

something we could have done to prevent these things, I think. And as a new mom

(I'm

one too), how would you know something like this could happen?

I also don't like the looks of the helmets/bands! And it's hard to see them on

your cute

baby's head. When we get to give Jerry a break from his helmet, I am always

just so happy

to see his cute head! I miss it!!! And in this age of technology, why cant

they make

helmets that breathe, so they are not so hot and sweaty????

I don't really know the difference between bands and helmets. We have one from

Hanger,

it looks like a helmet but I think it's referred to as a band. We too have to

drive a long way

(200 miles each way) to see the plastic surgeon and orthotist. That's a tough

trip on a

little guy who wants to be crawling around and exploring!

Good luck with your daughter's treatment. Six months old is a good time to be

starting.

All my best,

Joan

mom to Jerry (born 7/4/05, plagio, Hanger helmet 6/5/06)

and (born 7/4/05, no plagio)

[Guest guest]

I'm sorry this is hard. I know the initial diagnosis

is a shock. But having a definate diagnosis is better

than wondering what's up...better for him and you. Now

you can get the help for him that he needs (and you

know what won't work).

What worked for us is Speech Therapy (OT didn't do

much), and even though it's not therapy, sending him

to a Montessori program (though it's hard to find a

good one, and they have long waiting lists). I can't

tell you how much this benefitted him.

But I think the foremost thing to keep in mind with

autism is that it's a spectrum: no two people with it

will act alike, and people can't expect certain

behaviors. It's not fair. Also, whatever therapies

will work with one won't be beneficial for another.

There are generalities, of course. But I'd focus on

HIM. What are his specific needs, regardless of his

autism. For ex., Max needed/needs help in " pragmatics "

- conversational - speech. I don't know if that is

part of his autism or not, but he needed help, so we

got him ST.

Hope this helps.

- Adrienne

__________________________________________________

[Guest guest]

Austin was in st for about a year when they decided that even though he was

saying words without understanding the meaning of them just repeating what he

heard others say that he didnt need it anymore but now they are saying that he

is going to get it again. they had stopped ot when we moved from pa to al say he

didnt qualify for it here yet he did there i didnt understand that but i went

with it he has had what they called a special helper come every other week and

they dont plan to increase that even though i think he needs more because he

refuses to even play near other children in his class the only time he might get

close is to eat color or listen to music time (which is more then he did at the

other day care we pulled him out of) our biggest thing is none offered us any

help but they are going out of their way to help the day care dont get me wrong

i am happy they are helping the daycare but shouldnt someone be offering me and

my husband some tips at least the only

thing they did for us is give us a print out of some medical text that we didnt

really understand and sent us on our way we know some of the things that he does

are due to the autism but what else do we look for what should we expect what

can we do to help him shouldnt they be helping us with some of those questions

oh and i have a question being in the water seems to calm him or anything to

do with water like the sound of it watching our fish tank for hours or just

watching water run is that part of it also we got a dog not to long ago and he

seems to have opened up to him is that part of it too i know i am asking alot of

questions but i dont know anything about this and need as much help as possible

e

Adrienne Lehmann <adriennerob@...> wrote:

I'm sorry this is hard. I know the initial diagnosis

is a shock. But having a definate diagnosis is better

than wondering what's up...better for him and you. Now

you can get the help for him that he needs (and you

know what won't work).

What worked for us is Speech Therapy (OT didn't do

much), and even though it's not therapy, sending him

to a Montessori program (though it's hard to find a

good one, and they have long waiting lists). I can't

tell you how much this benefitted him.

But I think the foremost thing to keep in mind with

autism is that it's a spectrum: no two people with it

will act alike, and people can't expect certain

behaviors. It's not fair. Also, whatever therapies

will work with one won't be beneficial for another.

There are generalities, of course. But I'd focus on

HIM. What are his specific needs, regardless of his

autism. For ex., Max needed/needs help in " pragmatics "

- conversational - speech. I don't know if that is

part of his autism or not, but he needed help, so we

got him ST.

Hope this helps.

- Adrienne

__________________________________________________

[Guest guest]

e, if a service is stopped there has to be clear data showing the

child has either met all his/her goals or no longer needs the service. They

can't just stop it because they want to. When was the last time your son had a

full speech evaluation? I would request one in writing (to include pragmatic

speech testing). Pragamatics testing is important because that is " social "

speech. Making a conversation, eye contact, maintaining conversation etc. I

would also look into your local Parent Information Center or Autism

Project/Society. If you let me know where you are located I can get the

specific

information for you. Our Autism Society here in RI has a room where parents

can

go and read/borrow books on Autism, use the computer etc. It is also a great

place to connect and share information with other parents. Lastly, yes the

water would be providing your son with " heavy " work and sensory input. My

son loves the water too. I would build lots of sensory " breaks " into your

son's day. Again, if he hasn't had a recent Occupational Therapy evalualtion,

I

would request one in writing to the school department. Sensory diet can help

alot to keep a child on task, make them feel comfortable in their

environment and help them function in the classroom setting. Pam