Re: PLEASE HELP!!!

[Guest guest]

Hi ,

Everytime I read a " please help " email, it reminds me of my first

email for help for our son Tanner. I know how desperate you feel to write that

as your subject title! You are doing the right things though so far...Just the

fact that you are online and doing research and finding virtual support sources

is a great start! You may wish to check our " partner support page " to see if

there are any " live " support groups by you.

Since Haylee is hearing impaired and apraxic, you may want to know that there

are many apraxic children who are successfully being schooled at schools for the

hearing impaired or deaf. I know at the school for the deaf

that my son attends, (out of district placement) that there are children who

have both apraxia and a hearing loss, there are those that have a hearing loss

without apraxia, and there are those (like my son Tanner) who have apraxia

without a hearing loss. Two speech professionals that will lecture about this

for the upcoming New Jersey Speech Hearing Association are both part of this

grouplist, and are speakers for our CHERAB meeetings as well. (please check

meeting schedule at http://www.apraxia.cc These meetings are now filmed to

share with partner support groups) Dr. Joan Sheppard from Columbia who is a

renowned oral motor expert, and Pam Payne, who co-authored Links to Language 1,

Links to Language 2, and Teaching Tales. (archive posts #186 and #107) Also,

CHERAB's oral motor/apraxia specialist Lori Roth MA CCC/SLP I'm sure will have

words of advice since she has extensive experience in this area as well. Some

of the above was shown and talked about in the Inside Edition segment on apraxia

and our nonprofit.

It is known by experts on apraxia that our apraxic children do not " pick

up " language like regular children. This is why " just put them around normal

kids and they will pick it up and start to talk " not only is inaccurate advice,

but it typically results in additional behavioral problems due to frustrations.

Some experts now believe that apraxic children may benefit from the same

techniques and therapies for learning to talk as those used for the hearing

impaired or deaf children. The success rate at the schools for the deaf with

apraxic children has been high from the children I have personally seen. It

just may be something else for you to look into as you begin your research for

your area. I know that there are other members from our group from Florida, and

perhaps they will contact you as well. Have you yet seen a developmental

pediatrician? For insurance and school advocacy reasons, as well as to rule our

or confirm diagnosis, it's a good idea to do that as well. Please seek

professionals that are knowledgeable about apraxia and other disorders.

It's best to seek out " comprehensive " evaluations. Comprehensive means that you

seek out and reveal information from various and ALL sources possible. (or it's

not comprehensive!)

In Haylee's case this means, medical, speech, and other professionals that can

evaluate and then work together with her. At first they may not all agree on

everything because they are coming from various backgrounds, but in sharing

information working together professionally, they will ultimately come up with

what is best for Haylee, and at the same time this will let you know for sure if

Haylee is apraxic, and is she has other " soft " neurological signs like hypotonia

or SI, etc. It is best to avoid professionals that are not open to this idea of

working together with others.

One of the goals of CHERAB that is already underway is establishing

comprehensive " late talker / apraxia " evaluation and treatment centers at

hospitals.

My advice is to first explore the website at http://www.apraxia.cc to

learn as much as possible. Especially look under the importance of

one on one therapy, and types of therapy. (oral motor, Kaufman,

PROMPT, etc.) You will need to know where your child is evaluated

professionally as far as her speech delay, mild, moderate, severe, or

profound. You can then look at the ASHA (American Speech Hearing

Association) Matrix, also linked in numerous areas on our website.

Since your child is three you will also need to be aware of her

rights for appropriate education is your town's preschool disabled

program. If they are not able to provide the intensive one on one

appropriate therapy that she requires, you have the right to seek

alternative ways to educate her, including out of district

placement. Since she has a mild hearing loss and apraxia, a school

for hearing impaired children may be a great out of district option

for her.

I always recommend having a private speech therapist that can monitor your

child from the outside to watch progression. It's also wise to use

your child's developmental pediatrician or neurologist the same way.

You'll read much more advice in our archives and on the website and

links then I could fit here!

About ProEFA, please go to the website http://www.drstordy.com and

look under stories. The first story in the book The LCP Solution, by

Dr. Stordy and Malcolm Nicholl, under apraxia, is about my son

Tanner's experience with EFA (Essential Fatty Acid) supplementation.

It's because of what we've witnessed with my child and others that we

pushed our nonprofit to be involved in research with EFA. Our

medical and speech professionals are now talking to and working with

some of the leading experts in the area of EFA research. You can

research more about ProEFA in our archives, we believe it's the best

formula for apraxic children for many reasons. If your a parent like

me you may try other products first and find this out yourself down

the road. You can purchase ProEFA, The LCP Solution book, the Kaufman kits one

or two, and other products we believe helpful for an apraxic child through our

nonprofit or at our website http://www.apraxia.cc and it benefits CHERAB. We

are in the process of building a new website for CHERAB, and it should be up

soon!

Please let us know how things go with Haylee, I wish your whole family the

best!

[Guest guest]

Hi Lori,

I looked at the pictures and your son actually looks pretty good,

although I know from experience it's hard to capture the asymmetry

in photos. From what I understand, helmets don't do as much to help

the facial asymmetries since about 80% of the head growth is in the

back with 20% in the front, but it still may help. If there is a

Cranial Therapies location nearby, you can take him for a free

evaluation. Most STARband locations will also do a free evaluation.

http://www.cranialtherapies.com/

I think I saw another reply to you on the torticollis, but if your

son had it as an infant it's doubtful that one treatment would

completely correct it. Even minor tort can cause a whole host of

issues. My son had a very minor case that the doctors said

was 'fine' and without PT it caused facial scoliosis, odd crawling,

delayed walking, etc. You may want to consider having him evaluated

by a pediatric physical therapist or other specialist just to

confirm.

Sheila, mom to , 16 months, STARband 3/6-8/6, DOCband 9/6-?

>

> I just joined yesterday and posted an intro about my 6 month old

son

> Brock. One of his eye's is now bigger than the other.

>

> I've posted 5 pictures in the section: Our Plagio Babies - B.

It's in

> the B section. His name is Brock. The first 2 pictures are of the

> difference in eye size. And the other 3 are pictures of his

forehead.

>

> Please look at the pictures and tell me what you think. I've just

> noticed the difference in eye size about 2 weeks ago. What should

I

> do about this? Does he need a helmet. I'm sure insurance wouldn't

> cover it. How much does it cost?

>

> Please look at the pictures and tell me what you think I should do.

>

> Thanks!!!!!!

>

> Lori

>

[Guest guest]

Hi Lori,

Brock looks a lot like my son in the front- with the slight forhead

and eye asymmetry. But our son's plagio was severe so we did get a

helmet for him- when we took him they told us that there isn't much

chance of improvement in the front/face. But as they grow it should

become less noticable (and in a lot of cases no one would notice but

their mommies )

Where do you live? That plays a roll into how much your helmet would

cost b/c in different areas they use different helmets/therapies. Our

insurance didn't pay- we live in WA where they use the Clarren helmet

($2000). And you're right, a lot of insurances don't pay.

Good luck,

>

> I just joined yesterday and posted an intro about my 6 month old son

> Brock. One of his eye's is now bigger than the other.

>

> I've posted 5 pictures in the section: Our Plagio Babies - B. It's in

> the B section. His name is Brock. The first 2 pictures are of the

> difference in eye size. And the other 3 are pictures of his forehead.

>

> Please look at the pictures and tell me what you think. I've just

> noticed the difference in eye size about 2 weeks ago. What should I

> do about this? Does he need a helmet. I'm sure insurance wouldn't

> cover it. How much does it cost?

>

> Please look at the pictures and tell me what you think I should do.

>

> Thanks!!!!!!

>

> Lori

>

[Guest guest]

I don't really know that much about torticollis. I know initially

when we noticed his flat spot and forehead bossing (around 2 months

old), I did noticed that he would kind of hold his head tilted to the

side. I took him to the chiropractor and she said that she did notice

alittle something, I forgot what she called it, maybe a compression?

(he's a twin so we figured he was at a bad angle in utero). She

adjusted him and he seemed alot better. We also did agressive

repositioning and stretching exercises. When I took him back weeks

later she said that his neck felt fine. So, would she have been able

to determine torticollis. I haven't noticed him tilting his head or

anything like it now (he's 6 months old now).

Lori

> > >

> > > I just joined yesterday and posted an intro about my 6 month old

> > son

> > > Brock. One of his eye's is now bigger than the other.

> > >

> > > I've posted 5 pictures in the section: Our Plagio Babies - B.

> > It's in

> > > the B section. His name is Brock. The first 2 pictures are of

> the

> > > difference in eye size. And the other 3 are pictures of his

> > forehead.

> > >

> > > Please look at the pictures and tell me what you think. I've

> just

> > > noticed the difference in eye size about 2 weeks ago. What

> should

> > I

> > > do about this? Does he need a helmet. I'm sure insurance

> wouldn't

> > > cover it. How much does it cost?

> > >

> > > Please look at the pictures and tell me what you think I should

> do.

> > >

> > > Thanks!!!!!!

> > >

> > > Lori

> > >

> >

>

[Guest guest]

Oh no, so nothing can improve the eye asymmetry?

The strange thing is that the eye asymmetry is what seems to be

getting worse. It wasn't even really that noticeable a month or so

ago. Since Brock was born, my husband and mom both agree that his

eyes have never seemed perfectly symmetrical. But, I never really

noticed it, but now I really do. So it seems like its getting worse.

That's what worries me. The flat spot on the back of his head is

do-able. And I definitely can notice his forehead sticks out a bit

more on one side, but I don't think anyone else would really notice.

But the eyes, it seems like its getting really noticeable now. He's 6

months old now and very active, could it actually be getting worse? I

guess if he's still sleeping on one side. But, he sleeps on his

stomach now, but I suppose he could still be sleeping against one side

of his forehead. I guess I really need to watch it again. I just

figured that since he seemed better and that he moves all over the

place in his crib that everything was okay. I'm a horrible mom! I

guess I should have been paying more attention! Its hard, he's a twin

and I also have a 2 year old, so I'm busy. It had gotten so much

better and he was moving around so much, I didn't think it would get

worse!

We live in Sacramento (northern california)

Lori

> >

> > I just joined yesterday and posted an intro about my 6 month old son

> > Brock. One of his eye's is now bigger than the other.

> >

> > I've posted 5 pictures in the section: Our Plagio Babies - B. It's in

> > the B section. His name is Brock. The first 2 pictures are of the

> > difference in eye size. And the other 3 are pictures of his

forehead.

> >

> > Please look at the pictures and tell me what you think. I've just

> > noticed the difference in eye size about 2 weeks ago. What should I

> > do about this? Does he need a helmet. I'm sure insurance wouldn't

> > cover it. How much does it cost?

> >

> > Please look at the pictures and tell me what you think I should do.

> >

> > Thanks!!!!!!

> >

> > Lori

> >

>

[Guest guest]

mirabellalocl <andorcat@...> wrote: I don't really know that much about torticollis. I know initiallywhen we noticed his flat spot and forehead bossing (around 2 monthsold), I did noticed that he would kind of hold his head tilted to theside. I took him to the chiropractor and she said that she did noticealittle something, I forgot what she called it, maybe a compression? (he's a twin so we figured he was at a bad angle in utero). Sheadjusted him and he seemed alot better. We also did

agressiverepositioning and stretching exercises. When I took him back weekslater she said that his neck felt fine. So, would she have been ableto determine torticollis. I haven't noticed him tilting his head oranything like it now (he's 6 months old now).Lori> > >> > > I just joined yesterday and posted an intro about my 6 month old > > son> > > Brock. One of his eye's is now bigger than the other.> > > > > > I've posted 5 pictures in the section: Our Plagio Babies - B. > > It's in> > > the B

section. His name is Brock. The first 2 pictures are of > the> > > difference in eye size. And the other 3 are pictures of his > > forehead. > > > > > > Please look at the pictures and tell me what you think. I've > just> > > noticed the difference in eye size about 2 weeks ago. What > should > > I> > > do about this? Does he need a helmet. I'm sure insurance > wouldn't> > > cover it. How much does it cost?> > > > > > Please look at the pictures and tell me what you think I should > do.> > > > > > Thanks!!!!!!> > > > > > Lori> > >> >> __________________________________________________

[Guest guest]

You are NOT a horrible mom. We all get to a point where we think it's okay and we don't have to worry about it anymore.... and it certainly sounds like you've got your hands full and trying to spread one mommy around to three babies can't be easy. Once they become mobile, it's practically impossible to keep them from going to their plagio sides, so don't beat yourself up over it. Just keep on giving it your best. Can you post pictures of the cutie pie?? Maybe it's not as noticeable as you think? Candace, AZ mommy to Tiernan, 8 mos tort, plagio Hanger helmet 12/05/06mirabellalocl <andorcat@...> wrote: Oh no, so nothing can improve the eye asymmetry?The strange thing is that the eye asymmetry is what seems to begetting worse. It wasn't even really that noticeable a month or soago. Since Brock was born, my husband and mom both agree that hiseyes have never seemed perfectly symmetrical. But, I never reallynoticed it, but now I really do. So it seems like its getting worse.That's what worries me. The flat spot on the back of his head isdo-able. And I definitely can notice his forehead sticks out a bitmore on one side, but I don't think anyone else would really notice. But the eyes, it seems like its getting really noticeable now. He's 6months old now and very active, could it actually be getting worse? Iguess if he's still sleeping

on one side. But, he sleeps on hisstomach now, but I suppose he could still be sleeping against one sideof his forehead. I guess I really need to watch it again. I justfigured that since he seemed better and that he moves all over theplace in his crib that everything was okay. I'm a horrible mom! Iguess I should have been paying more attention! Its hard, he's a twinand I also have a 2 year old, so I'm busy. It had gotten so muchbetter and he was moving around so much, I didn't think it would getworse!We live in Sacramento (northern california)Lori> >> > I just joined yesterday and posted an intro about my 6 month old son> > Brock. One of his eye's is now bigger than the other.> > > > I've posted 5 pictures in the section: Our Plagio Babies - B. It's

in> > the B section. His name is Brock. The first 2 pictures are of the> > difference in eye size. And the other 3 are pictures of hisforehead. > > > > Please look at the pictures and tell me what you think. I've just> > noticed the difference in eye size about 2 weeks ago. What should I> > do about this? Does he need a helmet. I'm sure insurance wouldn't> > cover it. How much does it cost?> > > > Please look at the pictures and tell me what you think I should do.> > > > Thanks!!!!!!> > > > Lori> >> __________________________________________________

[Guest guest]

You are NOT a horrible mom. We all get to a point where we think it's okay and we don't have to worry about it anymore.... and it certainly sounds like you've got your hands full and trying to spread one mommy around to three babies can't be easy. Once they become mobile, it's practically impossible to keep them from going to their plagio sides, so don't beat yourself up over it. Just keep on giving it your best. Can you post pictures of the cutie pie?? Maybe it's not as noticeable as you think? Candace, AZ mommy to Tiernan, 8 mos tort, plagio Hanger helmet 12/05/06mirabellalocl <andorcat@...> wrote: Oh no, so nothing can improve the eye asymmetry?The strange thing is that the eye asymmetry is what seems to begetting worse. It wasn't even really that noticeable a month or soago. Since Brock was born, my husband and mom both agree that hiseyes have never seemed perfectly symmetrical. But, I never reallynoticed it, but now I really do. So it seems like its getting worse.That's what worries me. The flat spot on the back of his head isdo-able. And I definitely can notice his forehead sticks out a bitmore on one side, but I don't think anyone else would really notice. But the eyes, it seems like its getting really noticeable now. He's 6months old now and very active, could it actually be getting worse? Iguess if he's still sleeping

on one side. But, he sleeps on hisstomach now, but I suppose he could still be sleeping against one sideof his forehead. I guess I really need to watch it again. I justfigured that since he seemed better and that he moves all over theplace in his crib that everything was okay. I'm a horrible mom! Iguess I should have been paying more attention! Its hard, he's a twinand I also have a 2 year old, so I'm busy. It had gotten so muchbetter and he was moving around so much, I didn't think it would getworse!We live in Sacramento (northern california)Lori> >> > I just joined yesterday and posted an intro about my 6 month old son> > Brock. One of his eye's is now bigger than the other.> > > > I've posted 5 pictures in the section: Our Plagio Babies - B. It's

in> > the B section. His name is Brock. The first 2 pictures are of the> > difference in eye size. And the other 3 are pictures of hisforehead. > > > > Please look at the pictures and tell me what you think. I've just> > noticed the difference in eye size about 2 weeks ago. What should I> > do about this? Does he need a helmet. I'm sure insurance wouldn't> > cover it. How much does it cost?> > > > Please look at the pictures and tell me what you think I should do.> > > > Thanks!!!!!!> > > > Lori> >> __________________________________________________

[Guest guest]

You are NOT a horrible mom. We all get to a point where we think it's okay and we don't have to worry about it anymore.... and it certainly sounds like you've got your hands full and trying to spread one mommy around to three babies can't be easy. Once they become mobile, it's practically impossible to keep them from going to their plagio sides, so don't beat yourself up over it. Just keep on giving it your best. Can you post pictures of the cutie pie?? Maybe it's not as noticeable as you think? Candace, AZ mommy to Tiernan, 8 mos tort, plagio Hanger helmet 12/05/06mirabellalocl <andorcat@...> wrote: Oh no, so nothing can improve the eye asymmetry?The strange thing is that the eye asymmetry is what seems to begetting worse. It wasn't even really that noticeable a month or soago. Since Brock was born, my husband and mom both agree that hiseyes have never seemed perfectly symmetrical. But, I never reallynoticed it, but now I really do. So it seems like its getting worse.That's what worries me. The flat spot on the back of his head isdo-able. And I definitely can notice his forehead sticks out a bitmore on one side, but I don't think anyone else would really notice. But the eyes, it seems like its getting really noticeable now. He's 6months old now and very active, could it actually be getting worse? Iguess if he's still sleeping

on one side. But, he sleeps on hisstomach now, but I suppose he could still be sleeping against one sideof his forehead. I guess I really need to watch it again. I justfigured that since he seemed better and that he moves all over theplace in his crib that everything was okay. I'm a horrible mom! Iguess I should have been paying more attention! Its hard, he's a twinand I also have a 2 year old, so I'm busy. It had gotten so muchbetter and he was moving around so much, I didn't think it would getworse!We live in Sacramento (northern california)Lori> >> > I just joined yesterday and posted an intro about my 6 month old son> > Brock. One of his eye's is now bigger than the other.> > > > I've posted 5 pictures in the section: Our Plagio Babies - B. It's

in> > the B section. His name is Brock. The first 2 pictures are of the> > difference in eye size. And the other 3 are pictures of hisforehead. > > > > Please look at the pictures and tell me what you think. I've just> > noticed the difference in eye size about 2 weeks ago. What should I> > do about this? Does he need a helmet. I'm sure insurance wouldn't> > cover it. How much does it cost?> > > > Please look at the pictures and tell me what you think I should do.> > > > Thanks!!!!!!> > > > Lori> >> __________________________________________________

[Guest guest]

Hi Lori,

I think we're all learning that it is resolving the torticollis that

helps with the face. I talked to an ortho (over the phone) that

works with plastic surgery at children's memorial hospital in

chicago. (unfortunately I'm in denver). Anyway, she said with

torticollis and facial asymmetry, the tort side of the face is

actually smaller. so that explains the eye. You may also notice that

it is pulled back more than the other side?

I completely understand how you feel. I think we all do. We can't be

blaming ourselves, although I know we all do it. I beat myself up

every day for not taking my daughter to the right people from the

start--for not switching physical therapists sooner, etc.etc. I'm

learning now what I wish I knew the moment she was born. She is also

a twin and got crushed in utero. Anyway, please get your son

evaluated by a physical therapist. also consider taking him to a

cranial facial specialist.

six months is young still. He really needs to be stretched. The

ortho I talked to said they see the face change when the child can

look beyond their shoulder. I'm hoping to take her to see the

plastic surgeon, so I'll let you know what I find out.

Tricia Reimer

Mom to Anwen and , 12/22/05

> > >

> > > I just joined yesterday and posted an intro about my 6 month

old son

> > > Brock. One of his eye's is now bigger than the other.

> > >

> > > I've posted 5 pictures in the section: Our Plagio Babies - B.

It's in

> > > the B section. His name is Brock. The first 2 pictures are

of the

> > > difference in eye size. And the other 3 are pictures of his

> forehead.

> > >

> > > Please look at the pictures and tell me what you think. I've

just

> > > noticed the difference in eye size about 2 weeks ago. What

should I

> > > do about this? Does he need a helmet. I'm sure insurance

wouldn't

> > > cover it. How much does it cost?

> > >

> > > Please look at the pictures and tell me what you think I

should do.

> > >

> > > Thanks!!!!!!

> > >

> > > Lori

> > >

> >

>

[Guest guest]

Oops, my mistake. I remember looking at them when you first said you posted them! What a doll baby. Okay, well it is a bit noticeable that one eye is bigger than the other, but it's not too bad. Have you taken him anywhere for a consultation on a helmet? A lot of pediatricians don't have enough info on plagio, so they often don't give out recommendations on what to do , other than it will round out on it's own. Sometimes, we have to take it into our own hands. I don't know much about the eye symmetry, but it could be worth going in for the consult. I've heard, too, that helmets won't help with the eyes, but they could give you some other advice on what would work. I'm sure babies are just like we are, once they find a way they are comfy, that's the way they want to be! I know that as babies get older, there is less risk of their heads getting flat again, but I don't know the exact ages

or anything. Sorry I can't be of more help. Just keep reminding yourself that you didn't do this to him. Candace, AZ mommy to Tiernan, 8 mos tort, plagio Hanger helmet 12/05/06 and Ethan 3 yrs mirabellalocl <andorcat@...> wrote: I posted 5 pictures. Its in the Our plagio babies - B section. Hisname is Brock. I posted two pictures of his eyes and three of

his head.Thanks so much for the encouragement. Today I kept checking in on himas he slept. Each time he was either on his flat spot, or on hisstomach on the side of his forehead that is more "pushed back." Itried to move him but he just moved right back. Will he just alwayssleep this way?? What if we get a helmet and then he finished and itscorrected, but then he keeps sleeping on the side again. Will it goback again? I guess maybe the head stops growing so much, maybe.Well, let me know what you think about the pictures. Even today whenI was looking at his eyes it was very noticeable to me. Poor littleguy, he's such a fun little boy. I don't want this to make him feelbad about himself when he gets older.Well, let me know what you think about the pictures. Thanks!!Lori> > >> > > I just joined yesterday and posted an intro about my 6 month old son> > > Brock. One of his eye's is now bigger than the other.> > > > > > I've posted 5 pictures in the section: Our Plagio Babies - B.It's in> > > the B section. His name is Brock. The first 2 pictures are of the> > > difference in eye size. And the other 3 are pictures of his>

forehead. > > > > > > Please look at the pictures and tell me what you think. I've just> > > noticed the difference in eye size about 2 weeks ago. What should I> > > do about this? Does he need a helmet. I'm sure insurance wouldn't> > > cover it. How much does it cost?> > > > > > Please look at the pictures and tell me what you think I should do.> > > > > > Thanks!!!!!!> > > > > > Lori> > >> >> > > > > > __________________________________________________>