New here

[Guest guest]

Lesley,

Hi and welcome. I met another mom at gymnastics the other day whose daughter

has CP. It went undiagnosed until she was older than 2, maybe 3 or 4. They

just recently learned that she has maple syrup urine disease and supplement

her with b-1 (?). This has evened out her amino acids and stopped the

deterioration.

If she had had the newborn screening tests done, this would have been picked

up at birth and neurological damage avoided completely. As you probably

know, the testing is not routine in most states, although relatively

inexpensive. Pennsylvania as far as I know is the only state which routinely

tests for this, as there is a higher incidence among a group of descendants

who heavily populate that area. So my question to you is if you have had

newborn screening tests for rare metabolic disorders done on your daughter.

They can be done at any age.

This mother was also told by doctors that if they had not gotten her daughter

into speech therapy at 20 months, she would likely be autistic now.

Sincerely, Carol Goodson

[Guest guest]

Yes, yes, yes! My son is 20 and also has autism/mild CP. Our son too seemed

totally normal at birth. Symptoms began to emerge around 4 months, 2 months

after his DPT. Have you looked at the paper on the ARI

website? CP is listed as one side effect of mercury. Every symptom my son

has ever had is on that chart.

Please feel free to e-mail me privately if you want to chat. We've been

chelating since July.

Barb

[ ] new here

>We are totally new to this list and I have been lurking for a couple

>of weeks. My daughter, who is 4, has Cerebral Palsy as well as

>strong autistic features. She seemed totally " normal " at birth.

>As the months went by, she developed too slowly and became

> " tight " on the left side. Microcephaly became apparent. Autism

>is now making itself more clear as time goes by. It is obvious

>that the " autistic stuff " is truly her biggest obstacle as the CP

>is not THAT bad. It has taken me 4 years to pull this all apart.

>She never had a normal period and then regressed. It's always

>been a very slow curve of development. She is LOADED with

>sensory issues which we have tried to address with no luck,

>she remains nonverbal, ambulates with full assist, very laid back,

>extremely healthy, never sick. Tall and lean with a great appetite.

>

>I guess my question is, has anyone else's child been diagnosed

>with CP? Have you ever heard of Mercury poisoning causing CP?

>I have no idea of her cognitive status due to her autism, motor

>problems and lack of speech.

>

>I don't know whether to go down this whole road as she has more

>going on than autism. Thanks

>

>Lesley, mom to , 4 years,

>

>

>

[Guest guest]

Welcome, Selena!

Glad you found us. I believe you can find the support and friendship you

need here. We have a very smart, funny, compassionate bunch of people in

this group.

I'm looking forward to getting to know you better.

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

From: <SPBaldwin27@...>

< >

Sent: Friday, March 09, 2001 10:00 PM

Subject: [ ] new here

> Hi

>

> I am new here and wanted to introduce myself. I am 27 and I have RA,

> OA and Lupus. I have three kids and a husband. My name is Selena. I

> hope to find a good circle of friends and support.

>

> Selena

[Guest guest]

Hi Selena:

My name is . I am 53, single, and have RA, OA, Osteoporosis, Fibro,

Sciatica, Gout, Asthma, High Blood Pressure, and a kidney transplant.

However, I am doing okay.

Welcome to the group. I know you will like it here. The group has wonderful

caring people. I know you will be glad you came to this group.

Sincerely, Colletti

Anjillah@...

[Guest guest]

WELCOME SELENA! THIS GROUP IS GREAT. THERE IS A LOT OF INFORMATION THAT YOU

MAY NOT BE ABLE TO PICK UP ANYWHERE ELSE. MY NAME IS JOYCE I AM 41 AND HAVE

RHEUMATOID ARTHRITIS AND FIBRO-MYALGIA. I WAS DIAGNOSED WITH BOTH

RELATIVELY CLOSE TO EACH OTHER. AND THAT WAS 20 YEARS AGO. AND IT FEELS

LIKE I STILL HAVEN 'T GOTTEN ANYWHERE.

[Guest guest]

,

First let me say welcome - I'm glad you found us!! Your baby is very young,

has your ped suggested repositioning? Repositioning has worked very well for

a number of parents in this group. There are suggestions for repositioning at

plagiocephaly.org/support You might ask your ped about this technique and

give it a try! Also, has Adrienne's ped diagnosed torticollis? If so, PT will

help as well.

If you have decided that going with a band is the best option then you can

just hardly go wrong with the DOCband. We have many, many happy and satisfied

DOCband wearers in this group!! You might also inquire as to whether or not

you have a local orthotist closer by that makes a helmet or possibly a

STARband. I'm just thinking of ways to keep you closer to home so you don't

have a long drive or flight. We also have many, many happy and satisfied

parents here who used a locally made helmet or a STARband. The key there is

to interview the orthotist and make sure they have lots of experience with

the device and with infants.

One final question - have you seen a specialist yet? Most plagio babies are

diagnosed by a neurosurgeon, cranial facial specialist, etc. - these people

can rule out craniosynostosis (premature fusing of the sutures in the head)

This condition usually requires surgery to correct and sometimes gets

misdiagnosed as plagio.

Sorry this is so long. I hope I have been of some help to you. You should be

able to find all the answers and advice you could possibly need here. We have

a GREAT bunch of people here - this group is an outstanding source of

support, answers and friendship. I hope you will stick with us and share more

of your story and progress.

Best wishes to you and your family.

Marci (Mom to - helmet grad)

Oklahoma

[Guest guest]

,

Just wanted to say welcome to the group and that our son has worn the band for almost 2 months now, with great improvement. He started a week shy of 5 months old and they tell me that maybe he has 3-4 weeks tops left (he's 6.5 months now)! We have no regrets, after a few adjustments, no problems. We keep in in the ac as much as possible, and take it off if when we're outside (never- we are in S. Fla, we go from ac to ac!) for long periods. He had very misaligned ears and they are almost perfect now! We have absolutely no regrets with the band. Good luck and the fact that you will be starting early, means an early exit!

Good luck and keep us posted!

' Mom

[Guest guest]

,

Welcome to the group. I was wondering where you live. Did you check

into a locally made helmet. You may be able to find one closer to

you so that you can save yourself some of the stress that goes with

the travel. It is wonderful that you have such a wonderful Dr. who

is willing to help you out. Good luck and keep us posted.

April In Mass

Mommy to Bri and Mandy

> Hi:

>

> I'm , Adrienne's mom. She is 3 1/2 months old and has been

> diagnosed with plagio. She is a twin, and was only 3.3 lbs. at

birth

> (her brother was 7.4 lbs.) She is 10 lbs. now. We have received

info

> about the DOC band. It looks like our pediatrician will write the

> script for it if it's what we want to do.

>

> The nearest clinic is 8 hrs by car or 2 hrs by plane. We're willing

> to do it.

>

> Any advice??

>

> Thanks.

>

>

[Guest guest]

We live in Chico (Northern California). The closest CT clinic is in

Burbank (So. Cal). I've found lots of info that says the DOC band is

the best way to go. Have you had other experiences? We got the script

and letter of medical necessity today, so we'll be on our way soon.

Thanks for the response. Hope to hear from you soon.

JEnnifer and Adrienne

> > Hi:

> >

> > I'm , Adrienne's mom. She is 3 1/2 months old and has

been

> > diagnosed with plagio. She is a twin, and was only 3.3 lbs. at

> birth

> > (her brother was 7.4 lbs.) She is 10 lbs. now. We have received

> info

> > about the DOC band. It looks like our pediatrician will write the

> > script for it if it's what we want to do.

> >

> > The nearest clinic is 8 hrs by car or 2 hrs by plane. We're

willing

> > to do it.

> >

> > Any advice??

> >

> > Thanks.

> >

> >

[Guest guest]

Amber-

I know how you feel. The night I discovered apraxia I stayed on the computer

and cried until 3 a.m.

My son, Lenny, is now 3 years old. He was diagnosed by Dr. Marilyn Agin

(developmental pediatrician) at 35 months. He has hypotonia, sensory

intergration, oral/verbal apraxia and expressive language delay. He is also

very bright and ahead in some areas. I believe lots of apraxic kids are at

or above level cognitively. In fact, he is so bright that my school district

originally denied all sevices saying his lack of speech did not effect his

ability to learn. We fought and he is now in an intergrated nursery school

and receiving speech therapy and occupational therapy. In addition, we have

him on ProEFA.

My best advice is follow you gut feeling. Go to a developmental ped or a

neuropsychologist (someone experienced in apraxia) and have him evaluated.

As well, try calling Early Intervention in your state. In NY, they are

contacted through the Dept. of Mental Health.

If you ever want to talk, email me directly at LynaughBoyz@....

Good Luck.

Lynaugh

[Guest guest]

OOOHHH Amber! Welcome and please know that you are not alone. We have all

had those same tears at one time or another but know that with help our

children can do all the same things all other children do. It's just harder

and takes alot longer. My son is 7 now and i know what you are feeling

because i have been there. I remember just wishing my son to

pleeeaaase say my name MOM. He was three then. He has come a long way

through speech therapy and OT (years now) and he is still improving in

clarity and sentence structure. He is starting to read and learning math

now. Surprisingly he reads much better than he is at math (they say the

opposite for apraxic children.) Please know that it does get better but yes

there are many tears in the process. Don't loose hope and always be there

for your child no matter how tired, how hard it sometimes can be for you. We

are all here for you just write us.

Kerry ,

Mom to apraxia age 7

[Guest guest]

Welcome Amy:

I think we are on another group together, but I can't figure out which

one.

I am Angi, mom to Katelyn and . has mild CP, hypotonia,

Apraxia and Dysarthria.

Angi

[Guest guest]

Hi-

I recently stumbled on this site- and seriously think I have discovered my son

is severly apraxic. (!!!)

Our story quickly...

Adam has always been hypotonic and started PT, OT, and ST at one year. He has

been tested had every medical test and no answers were found. I've always

expressed my concern about Adam not being aware of his mouth and how to use his

tongue and lips. Our ST keeps telling me she can't make him talk, he babbles,

and he'll talk eventually. After reading this site, I have to disagree!!

We've also heard a lot of words (said clearly and in the right context), never

to be heard again. Adam just turned 3, and has no words but will sign for

" more " and " all done, " and will shake his head for yes and no.

Now I am kicking myself that I didn't get better help sooner. But can anyone

help? What should I do for my son? What speech therapy works best? Should I

try the EFA's?

I am frantic. Thanks,

amy, mom to Adam

[Guest guest]

First stop kicking yourself. 3 years old is not a tragedy. My son is

3 and 4 months and has only taken off in the last 4 months. The

important thing is to get help now. My first thought is to get a new

speech therapist familiar with apraxia.

Get a neurodevelopmental evaluation preferably with a Dr. familiar

with apraxia. I would also find a therapist familiar with it as well.

Traditional speech therapy is not very effective with apraxic kids.

If you go to the apraxia.cc WEB page there are sections discussing

this.

PROMPT therapy and the use of Kaufman cards as well as 1:1 therapy

prove successful with apraxic kids. The prompt Institute can give you

namse of PROMPT therapist in your area, although I admit they weren't

very helpful in my case.

As far as the EFAs go, I have found them to be very successful. Print

out the info on it and show it to your Dr. before beginning. They are

not prescription meds but I would consult a medical professional

first. There is also abook called The LCP Solution (also a web page)

which is very interesting.

At 3 he qualifies for help in your public school district. Most have

a preschool program. They have to provide you with a free and

appropriate public school education. The important thing is to make

sure they have SLP that know about apraxia and how to treat it. He

also may qualify for OT and PT depending on his needs. If he got it

through Early Intervention, my guess is he can get it through the

school as well. If he needs it push for it.

There is another group list called IEP_Guide which is also helpful.

Good luck.

mom to 3.4 with verbal and oral apraxia

> Hi-

> I recently stumbled on this site- and seriously think I have

discovered my son is severly apraxic. (!!!)

>

> Our story quickly...

> Adam has always been hypotonic and started PT, OT, and ST at one

year. He has been tested had every medical test and no answers were

found. I've always expressed my concern about Adam not being aware

of his mouth and how to use his tongue and lips. Our ST keeps

telling me she can't make him talk, he babbles, and he'll talk

eventually. After reading this site, I have to disagree!! We've

also heard a lot of words (said clearly and in the right context),

never to be heard again. Adam just turned 3, and has no words but

will sign for " more " and " all done, " and will shake his head for yes

and no.

> Now I am kicking myself that I didn't get better help sooner. But

can anyone help? What should I do for my son? What speech therapy

works best? Should I try the EFA's?

> I am frantic. Thanks,

> amy, mom to Adam

[Guest guest]

Hi Amy, don't beat yourself up about not getting an eval sooner, i waited

until my son was 3 as well. Finding a good speech therapist who has

experience with apraxia is really important. I went through a couple, before

finding a gem! This morning said to me, " i got up and turned on the

t.v. all by myself today mummy " In May he had 3 words! You'll get lots of

good info here from all the parents so good luck. Kate

[Guest guest]

Hi Ami,

I too, have a son Adam who is 3. Adam was diagnosed with Apraxia when he was

2 1/2. We went to a Developmental Pediatrician who was familiar with

Apraxia. I think it is essential to have your son evaluated by a medical

professional. This can rule out any other possibilities or issues.

3 is not the end of the world for this. You really caught this earlier than

many. I have heard of stories of 4 and 5 years old being found to be apraxic

and still making wonderful progress. I do wish that doctors would send all

non-verbal two year olds for evaluations. By this not being done, so many

children are discovered later than need be.

Don't be discouraged. Many, if not most Apraxic children become competent

communicators. The key is early and appropriate intervention. Shop around

and interview therapists and find one that works well with your Adam and has

experience in dealing with Apraxia.

The ProEFA has helped my son in many ways and I would encourage you to

discuss it with your doctor or specialist. Much research is being done in

this area and I truly feel it may be the key to helping our children.

As a sign of hope, my son Adam was non-verbal in February except for the word

" NO " . (seems most get that one pretty quickly) He now has several hundred

words, repeats everything, puts 2 and 3 words together and even sings song.

We have come a long way and there is a light at the end of the tunnel. Keep

encouraging your Adam and don't give up on finding the best treatments for

him.

Good luck to you and welcome to our wonderful group.

Janet

(mommy to Adam - 3, verbal apraxia and Kaitlyn - 9 months and babbling away)

[Guest guest]

Welcome Amy!!!

> Hi-

> I recently stumbled on this site- and seriously think I have discovered my

>son is severly apraxic. (!!!)

[Guest guest]

That's the kind of success story that we all like to hear! Where are you

and your obviously successful SLP! Can you tell me more about the symptoms

your child had up to age 3?

[Guest guest]

Hi, not sure if you're talking to me! But i am in L.A. had a difficult

delivery, could not breastfeed(pumped for four months) and had severe reflux.

He never babbled much as a baby and eventually his only communication was

pointing and grunting in the back of his throat. He never learnt to chew food

he had to have ot to learn to eat and although was never officially

diagnosed with oral apraxia i am sure he did have that, although does not

seem to have any problem now with it. He has been 'downgraded' to moderate

verbal apraxia from severe in May. Kate.

[Guest guest]

Welcome Kate and .

Angi

[Guest guest]

I added Nestle Quik to rice milk because my son wouldn't drink it straight

either. I think that it is safe to give him. I noticed a huge difference once

i got off of milk. It's hard but stick with it. Good luck.

[Guest guest]

Hi ,

I understand completely what you are going through, Noah

will be 4 in April and is so picky when it comes to eating. I have

decided that I am going to try enzymes without the diet first to see

if there are any changes, It seems to be easier for me to try it this

way instead of changing the food, and if for some reason the enzymes

alone don't work, then I can change the food. This is a really great

chat board, They have given excellent information, and advice, even

with enzymes alone. I am going to start Noah on the enzymes Christmas

break, that way if he is to have any side effects, I can catch them,

Just wanted to say Hello, and that I know exactly how you feel, it

can be a nerve whacking experience but that is what we are all here

for is to help each other through it, Happy Thanksgiving, Love Janet

- In @y..., " " <noty3t@y...> wrote:

> Hi to all...my name is and I have a 32 month old son, Seth,

who

> is developmentally delayed suspected ASD. I have taken him to a

DAN

> doctor who recommended that we remove gluten and casein from his

> diet. Seth is completely non-verbal(babbles only) and will not eat

> anything that I offer him. I can't get him to drink rice or soy

milk

> or eat anything that does not contain gluten....believe me, he

knows

> the difference!!

>

> I have read a little about the use of Peptizyde and would like to

> hear any experiences with using enymes without the diet. Also, has

> anyone used the enzymes and then worked into the diet later on?

Have

> you had success introducing knew foods after getting through

> the " withdrawal period? " Any help would be appreciated.

>

> Thanks in advance!

[Guest guest]

In a message dated 1/11/2002 8:29:52 PM Central Standard Time, Plagiocephaly writes:

Has anyone else been to this place in Burbank??

My son Tommy was treated at Cranial Tech in Burbank and it was a very positive experience for us there. (the ortho) is great! I'm lucky...my ins. paid for all $3,733 of it!

Welcome to the group. Most of the people here are pretty cool and can answer all your questions.

Jill Ramos, Las Vegas, NV

[Guest guest]

Hi,

Your daughter sounds alot like my almost 3 year old. Her receptive

language is excellent but she can only say a few words that can be

reconized. I have noticed if I am really in tune with her at the

moment, I can make out what she's trying to say. Today I was in the

living room trying to put Sponge Bob on for her, and I said where's

the remote control. I swear she pointed and said the remote control

is over there. It wasn't plain but I could tell what she was trying

to say. The funny thing is that she can balloon and bubble but when

I ask her to say baby it's way off. She doesn't even put the b in

the word. STRANGE Yesterday the physical therapist came here for

breakfast to watch her eat because of feeding problems. She has

outgrown alot of them but when she was younger I'd be lucky to get

through a meal without her throwing up. I think some of it was

texture problems. (example) Scrambled eggs she would gag on when I

put them in her mouth. But she has always had a gagging problem.

Sometimes she will hold her food in her mouth so long she'll gag.

Meats are a real mystery. Fried chicken fingers no problem. Chicken

and rice with the same chicken strips she will chew and chew until it

turns to sawdust in her mouth and she will spit it out. Beef is the

same way. Watching her tongue when she eats, to me looks

uncoordinated that why the OT was here yesterday. I worry about her

though, unlike my first daughter she could careless about eating. She

would much rather fill up on liquids making meal time very STRESSFUL

[ ] New Here

Hi, my name is Karla and I have a 2 year old little girl named

Jenna.

She is currently enrolled in the Early Start program through our

county for

speech and yesterday her speech therapist told me she shows some

signs of

having apraxia of speech.....so off I went to research what this

means.

I enrolled her in early start because she was almost 2 with only 2

words

(mama and dada). She never babbled, never used jargon, and her

receptive

language skills are way ahead of her verbal. She now has about 17

words, but

not all of them can be understood and she never uses 2 words

together....as a

matter of fact, she hardly uses any of her 17 words...just once in

a blue

moon and they all start with B, N, M or Y. If we ask her to say

something,

she usually wont even try, it is like she doesn't know how. She

does however

do anything we ask, or if we ask her to say something that she

knows the sign

for, she will sign it. Luckily she has learned about 20

signs...and that has

helped her communicate with us. I have just started to notice she

is getting

angry and frustrated again with things she can't yet

communicate. She has

had her hearing checked and that is fine. She makes eye contact

and is very

social.

She is 2 years old and is only 20 1/2 pounds.....she has been a

very picky

eater from day one. She is just now starting to eat a little

better, so we

are hoping she will catch up in the growth department.

Well, just wanted to introduce myself. Please pass along any

information you

think I should have at this stage. I called our health food store

and the

man suggested B vitamins and Flaxseed Oil...anyone know if these

work? He

said that the Omega 6 show better progress in boys and girls need

the Omega

3.

Thanks,

Karla

Mom to

Jackie, , Jenna and Kamryn

[Guest guest]

In a message dated 1/19/02 8:48:17 AM Central Standard Time,

rhbowyer@... writes:

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

> Crest one is like $6) and just letting her play with it.

Thanks for the advice. I will get one today.

Jenna doesn't throw up if she puts textures in her mouth she doesn't like,

but they don't stay in there very long...they usually hit her tongue area and

she spits them out right away. That is what she used to do with oatmeal and

corn, but now she is eating those.

My ped didn't want us to do the Pediasure....he said he wanted her really

hungry in hopes she would eat solids. Was this good advice? She takes a

multi-vitamin.

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>