New to the group

[Guest guest]

Hi there: Welcome to the group. You will find this is a very supportive

group and you will get lots of support as well as good information. One of

the hardest things about RA is the physical limitation it imposes on our

bodies. It really requires a life style change. I have found by keeping my

spirits up and having the support of a loving husband, friends and children I

can live with it. I have had RA since 1994, already had a knee replacement

and have to have the other one done this summer. I am 58 and had to stop work

because of the RA. I wish you well and will chat with you soon.

Jan in SC

[Guest guest]

hi, i'm kathy 41 feel like 71 today but with good reasons. my son and i

painted the ceilings in the kitchen and living room!! so now i am really

stiff and hunched over and my feet and ankles hurt. my hip is out of place

and i feel really twisted!!! i have inflammatory spondyloarthropy. ( a big

pain in the back!!) i also run alot of fevers. was just on relefan (had to

quit because of tummy bleed) i am on enbrel which is losing it's potency and

i'm supposed to be trying methotrexate as soon as i get more $. i have been

home on short term medical disability since december. i've had carpal tunnel

in both hands also tarsel tunnel (same in feet). run low grade fevers alot.

kathy

[Guest guest]

Hi,

I am sorry it didnt catch you name.... Welcome to the group!! you

will really enjoy the conversation, lots of information and caring.

I am a R (there are two paulas in this group, i am the newest

and less knowledgable one:)) I am 37 years old(and boy do I feel old

these days) I was diagnosed with RA in February and when i went to my

internist he said that I also tested positive for Lupus. I am not too

worried about the lupus, I have heard that it is common to test

positive. I am going back to DR. tomorrow to find out the results of

my latest blood test. I think he will put me on MTX. He did put me on

Ralefen, but i seemed to be hurting worse with that than with Aleve

so i stopped that on saturday and went back to the aleve, I am not as

stiff.

I think one of the most important things is to have a very supportive

family. I also have a great spouse.

a R

-- In @y..., dunnm@s... wrote:

> Thanks for having this group. I have just been looking through the

> archives. I am a 42 year old male, diagnosed with RA 8 months ago.

> The doctor currently has me taking plaquenil, celebrex and

prednisone.

> The biggest struggle for me has been from making the transition

from

> being a physically active person ( I ran 5 miles a day) to having

my

> body prohibited me from exercising like I enjoy. Other than that,

I

> am fortunate to have a very supportive loving wife. Thanks again

for

> allowing me to be a part of this group.

[Guest guest]

Welcome, New Member!

Please let us know what you would like us to call you. I'm sorry about your

RA diagnosis, but I'm happy that you found us. This is a great group of

smart, caring people. It is wonderful that you have such a supportive wife.

That is so important.

I know it's frustrating to be limited in ways that you weren't before, but

maybe, for example, you can find an exercise to substitute for your running

that you'll discover that you like better. Even for people without RA,

running is hard on one's joints.

Looking forward to getting to know you better.

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

From: <dunnm@...>

< >

Sent: Monday, March 26, 2001 12:55 PM

Subject: [ ] New to the group

> Thanks for having this group. I have just been looking through the

> archives. I am a 42 year old male, diagnosed with RA 8 months ago.

> The doctor currently has me taking plaquenil, celebrex and prednisone.

> The biggest struggle for me has been from making the transition from

> being a physically active person ( I ran 5 miles a day) to having my

> body prohibited me from exercising like I enjoy. Other than that, I

> am fortunate to have a very supportive loving wife. Thanks again for

> allowing me to be a part of this group.

[Guest guest]

Welcome to our group. I can relate to the lifestyle changes that came with this

disease. I've learned to do what I can on my good days, and rest when I have

to. What I hate the most is not knowing from one day to the next how I am

going to feel. Are your meds working for you? Plaquenil has a good success

rate and is a standard first drug. If you've read the archives, you already

know that prednisone is the drug we have a love/hate relationship with.

I'm 46 and on Enbrel and MTX. I'm glad you have a supportive wife. I too and

blessed with a great husband. It makes a big difference when we have the

support of our family.

a

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

From: dunnm@...

Sent: Monday, March 26, 2001 1:55 PM

Subject: [ ] New to the group

Thanks for having this group. I have just been looking through the

archives. I am a 42 year old male, diagnosed with RA 8 months ago.

The doctor currently has me taking plaquenil, celebrex and prednisone.

The biggest struggle for me has been from making the transition from

being a physically active person ( I ran 5 miles a day) to having my

body prohibited me from exercising like I enjoy. Other than that, I

am fortunate to have a very supportive loving wife. Thanks again for

allowing me to be a part of this group.

[Guest guest]

> I have six children. Five of them have problems with malabsorption

> due to pancreatic insufficiency. Three of them have been diagnosed

> with autism.

WOW le,

I think if any of us thought we had a lot on our plate, we will be

looking at it a bit more thoughtfully now! But each one is important.

You can get the Peptizyde and HN-Zyme Prime enzymes which most are

talking about at www.houstonni.com. They have only been available for

about 4 weeks, so we are all in this new-ness together. Some of us

have had some very limited experience with enzymes before, but

nothing like what you are hearing about.

How old are your kids? and what symptoms do they have? how long have

you been on creon?

.

[Guest guest]

defelice@... wrote:

> How old are your kids? and what symptoms do they have? how long have

> you been on creon?

Our children are all 2 years apart, the oldest is 13, the youngest just

turned 3. Some of them have very mild pancreatic symptoms, a belly ache once

in a while. A few of them are more severe. As for the autism, all of them

have some autistic features. The ones with diagnoses are in the mild to

moderate range. My life isn't as hard as it sounds. : )

Ben (almost 9) is the worst. He has distended belly, stomach ache, stinky

gas, steatorrhea (sp?) and poor growth and weight gain. He also has mild

autism and severe ADHD. He has been on Creon for about a year, at my

insistence. His behavior is a major issue, as are his sensory problems. He

is a picky eater, so I don't dare try to put him on the GF/CF diet...he would

starve to death. We have been watching his diet VERY closely lately, and if

we remove bread and give him more yogurt his behavior is remarkably better.

My youngest has more of the digestive issues than autism, but she definitely

has autistic features. Creon helped her gain weight right away.

I have the same pancreatic problems my children have. I am taking Ultrase,

which is supposed to be like Creon. I am trying the GF diet myself, and it

seems to help my brain clear up. Strangely, though, it seems to make my

pancreatic pain worse. My mother has always believed that enzymes could

help, and we have bought store brand types of papaya enzymes for years. They

do help. I am very interested to see what happens with the peptizyde. As

usual, I think I'll be the family guinea pig.

Thanks for asking!

le

[Guest guest]

le,

Has your family been tested for celiac disease? You might want to rule that out! www.finerhealth.com has some stool tests you can order to do at home. (BTW, most doctors know very little about celiac disease - it's actually quite common and severely underdiagnosed.)

in IL

Re: [ ] Re: New to the group

Our children are all 2 years apart, the oldest is 13, the youngest justturned 3. Some of them have very mild pancreatic symptoms, a belly ache oncein a while. A few of them are more severe. As for the autism, all of themhave some autistic features. The ones with diagnoses are in the mild tomoderate range. My life isn't as hard as it sounds. : )Ben (almost 9) is the worst. He has distended belly, stomach ache, stinkygas, steatorrhea (sp?) and poor growth and weight gain. He also has mildautism and severe ADHD. He has been on Creon for about a year, at myinsistence. His behavior is a major issue, as are his sensory problems. Heis a picky eater, so I don't dare try to put him on the GF/CF diet...he wouldstarve to death. We have been watching his diet VERY closely lately, and ifwe remove bread and give him more yogurt his behavior is remarkably better.My youngest has more of the digestive issues than autism, but she definitelyhas autistic features. Creon helped her gain weight right away.I have the same pancreatic problems my children have. I am taking Ultrase,which is supposed to be like Creon. I am trying the GF diet myself, and itseems to help my brain clear up. Strangely, though, it seems to make mypancreatic pain worse. My mother has always believed that enzymes couldhelp, and we have bought store brand types of papaya enzymes for years. Theydo help. I am very interested to see what happens with the peptizyde. Asusual, I think I'll be the family guinea pig.Thanks for asking!le

[Guest guest]

julie wrote:

<< Has

your family been tested for celiac disease? >>

, thank you for the suggestion.

Yes, we have been tested. We are negative for Celiac disease, cystic

fibrosis, hyperlipidemia, and any obvious genetic abnormality that can

cause pancreatitis or autism. I know there is a genetic basis to

what our family is experiencing, but scientists haven't found it yet.

le

[Guest guest]

> hello,

> i am new to this group, my son (8) has been gfcf for 2.5 months

now,

> not seen results yet, apart from some regression (wetting the

toilet-

> floor 5 times a day). For now I just look at other people's

postings

> to get ideas and thoughts for future treatments (chelation?). wish

> that we had Dan-doctors here in the Netherlands, where we live. Our

> son was tested by dr. Reichelt in Norway as a " gluten induced

autist "

> Thank you for all the information. n (Amsterdam)

n,

How exciting that your son was tested by Dr. Reichelt! I have a few

thoughts for you. As you probably already know from talking to Dr.

Reichelt, it can take much longer to see results with an older

child. Also, have you tried removing corn and soy? Many of our

children cannot tolerate these foods, either. Corn and soy did not

show up as a sensitivity on testing, but I discovered my son could

not tolerate them by trial and error. My son also could not tolerate

highly phenolic foods. If you decide to try the enzymes, you may get

results you didn't see before. My almost eight-year-old has been on

the diet for one year with great success. Since adding the enzymes

four weeks ago, we have seen another huge leap in his behavior. The

enzymes are obviously breaking down foods we didn't realize were a

problem. We have not tried chelation because my son is high-

functioning and we decided it was not worth the risk at this time.

I'm sure someone on this board can give you information about

autsim/mercury boards. Also, check out Dana's website and click on

her links for chelation: http://home.pacbell.net/cscomp/dmain.htm.

[Guest guest]

Welcome !

It was hard on all of us to hear that our children have this dx or that dx.

It took me a long time to accept it - years even. I still cry about it at

weak moments. But you can feel good when you know that you're doing

everything you possibly can for your child. My son is , who is almost

5. He has apraxia, hypotonia (low muscle tone), and global delays. He gets

behavior therapy along with OT and ST, in my home every morning for 3 hours.

He still takes a nap every afternoon. After supper I work with him on

physical therapy around the house. He's doing very well so far and I can

finally see some muscle tone in his legs!

Well, good luck to you and it's nice to meet you!

~~

[Guest guest]

a and others in the group,

My wife and I just discovered our son Luke (37 months) has been

'hesitantly' diagnosed with developmental apraxia only last Friday and

joined the group after discovering the Apraxia-kids website only 2 days

ago. Already we have received many emails - 13 today alone. Wow!

I believe the 'hesitant' diagnosis is due to the difficulty in

determining this condition without detailed assesments and have read

from others today that it took up to two years for their child to be

properly diagnosed with apraxia. My own reading on the subject would,

however, concur with our therapists initial conclusions.

We live in Sydney, Australia (I am American from Detriot)and do not

necessarily have the problems you face with insurance. As a matter of

fact, the local council (government) provides a speach therapist free of

charge, much to our surprise. Our therapist seems good, but it is hard

to say how good she is with apraxia as we have only just begun to see

her. Should we feel the need to find a second opinion or better

therapists we too may have insurance problems.

I have discovered, that we are fortunate to have here in Sydney a clinic

that specializes in speach therapy where a Caroline Bowen works who has

written a book on Developmental Phonological Disorders - A Practical

Guide for Families and Teachers. Has anyone heard of Caroline or read

her book? Her website is located a www.member.tripod.com for those who

wish to researh further.

In future, I shall try not in inundate everyone's in box by pressing the

'reply to all' button. Just getting used to such on-line groups myself

for the first time.

For those American members, I hope everyone had a nice 4th July - an

event which is easily forgotten so far away from 'home'.

Lars & Miriam Lohmann (Parents to Luke)

[Guest guest]

Hi a,

Welcome to the group. It is always nice to have a new person with us.

This is a very informative group that can answer very professionally just

about any question you may have.

There are doctors, speech therapists, educators and many professional

people and best of all, the Moms. This is a very caring and loving group and

we all learn from each other.

Feel free to ask any questions, none are too small, and the people here

will respond. Remember that you are helping us also by sharing 's

story with us.

I am one of the Grandmothers here and I have a a 3.6 yr. old

granddaughter with apraxia. She is the light of our life. Through this

group, we have learned everything, including the diagnoses, apraxia. We know

that intensive speech is essential and that the school is required by law to

give it to us.

Some insurance co. will pay for speech and my daughter's will pay if it

is a qualified speech center. has speech four times weekly. The most

she could get for the summer from the school was one, 1 hr. session weekly.

She also goes to Easter Seals, Akron University Speech Center and Children's

Hospital, all once a week. It's preferable to have one good speech therapist

but this is the best we can do for this time.

Thanks for joining us a and hugs to

[Guest guest]

Hi a!

Welcome! I'm and my son, , will be 5 on the 17th. He has

apraxia, hypotonia, and global delays. He is getting ABA therapy in my home

every morning for 3 hours. They work on behaviors, speech, academics, OT,

etc. I'm finally seeing results! Tell us more about .....

~~

[Guest guest]

Wow, how did you get Luke diagnosed so soon? The doctors always told

me, oh, he's a boy sometimes boys take longer to talk. And the two

older kids don't have any speech problems. Man, that is great,

because my son was three before I was able to get him good therapy

and was 5 (this year) when they told me about Apraxia. Man, feel

blessed to get things going sooooo soon, it is a great advantage. If

the Dr.'s would of did that for me we would be much further than we

are.

a

> a and others in the group,

[Guest guest]

Hi ,

It's funny when I read your e-mail to me I had to laugh, not because

of what you said at no means. My best friend's name is and her

dh is .

Well to anwer you question, just turned 5 in Jan. He is now

seeing a neauralogist(sp) to find out if there are any other problems

other than Apraxia. I deal with him on alot of behavior problems that

I don't deal with, with my other children. He is also behind the

average 5 year old as far as writing etc. Thay are sending me for

different tests. Other wise I am new to this, can you tell me more

about hypotonia? I've heard that word before but no one has really

expanded on it for me. My son was just diagnosed with Apraxia this

year. At the age of three he still wasn't talking all he did is

point and grunt. We have a real hard road with him, he screamed the

whole hlf hour for the the first year of therapy every time we took

him. I could go on and on. Please write back, I'm looking forward to

getting to know you.

a

> Hi a!

>

> Welcome! I'm and my son, , will be 5 on the 17th. He

has

> apraxia, hypotonia, and global delays. He is getting ABA therapy

in my home

> every morning for 3 hours. They work on behaviors, speech,

academics, OT,

> etc. I'm finally seeing results! Tell us more about .....

>

> ~~

[Guest guest]

Thanks for the invite,

I have a question you mentioned Children's Hospital. Are you talking

about the one in St. Louis? If so I live right across the river.

Let me know. Sounds like we could be close.

a

> Hi a,

> Welcome to the group. It is always nice to have a new person

with us.

> This is a very informative group that can answer very

professionally just

> about any question you may have.

> There are doctors, speech therapists, educators and many

professional

> people and best of all, the Moms. This is a very caring and loving

group and

> we all learn from each other.

> Feel free to ask any questions, none are too small, and the

people here

> will respond. Remember that you are helping us also by sharing

's

> story with us.

> I am one of the Grandmothers here and I have a a 3.6 yr. old

> granddaughter with apraxia. She is the light of our life. Through

this

> group, we have learned everything, including the diagnoses,

apraxia. We know

> that intensive speech is essential and that the school is required

by law to

> give it to us.

> Some insurance co. will pay for speech and my daughter's will

pay if it

> is a qualified speech center. has speech four times

weekly. The most

> she could get for the summer from the school was one, 1 hr. session

weekly.

> She also goes to Easter Seals, Akron University Speech Center and

Children's

> Hospital, all once a week. It's preferable to have one good speech

therapist

> but this is the best we can do for this time.

>

> Thanks for joining us a and hugs to

[Guest guest]

Hi again a,

Hypotonia in all over low muscle tone. When he was 2 he fell down my

basement steps - broke two bones in his foot and scratched up his face

pretty good. Last night he fell again down 3 steps outside - thank goodness

no broken bones this time! The hypotonia just makes him weak and clumsy.

He is aware of his limitations and most of the time he takes steps very

slowly. He was excited both times he fell.

Gosh, you don't have to tell me about screaming! Well, is not a

screamer (takes too much effort), but he cried for every single session of

his ABA therapy for a good 6 weeks. He is the current record holder! Gee,

what an honor. I watch and listen to each session thru a camera I installed

in the " therapy room " . The crying was really getting to me. There were a

lot of times that I had to go out on the front porch to get away from it.

Now he is much better. He still doesn't look forward to his sessions, but

at least the crying has stopped! He is very attached to me, I guess. When

we have guests over, he will stay by my side and even put up his arms to be

held. He's afraid I will go away and leave him with these people as

babysitters, which never happens. The only people I leave him with are

family members (and even then only a select few!).

Yes, has behaviors, too, that I believe are from the apraxia. He

can't tell his sisters or anyone that he wants them to stop or something

else, so he pinches or scratches them. My girls have some scars on their

faces to prove this. The frustration of not being able to talk! I just

can't imagine it. Starting him on the picture system has helped, but he

doesn't have a lot of pictures yet.

He's back on the ProEFA now. I did take him off and put him on the DHA Jr

on the advice of his developmental pediatrician, but I'm sorry I did that,

so I switched him back. They say you have to give that several months to

see maximum results.

Anyway, thanks for writing back! I look forward to getting to know you,

too! We'll get our boys there, one way or another!

~~

> Hi ,

> It's funny when I read your e-mail to me I had to laugh, not because

> of what you said at no means. My best friend's name is and her

> dh is .

> Well to anwer you question, just turned 5 in Jan. He is now

> seeing a neauralogist(sp) to find out if there are any other problems

> other than Apraxia. I deal with him on alot of behavior problems that

> I don't deal with, with my other children. He is also behind the

> average 5 year old as far as writing etc. Thay are sending me for

> different tests. Other wise I am new to this, can you tell me more

> about hypotonia? I've heard that word before but no one has really

> expanded on it for me. My son was just diagnosed with Apraxia this

> year. At the age of three he still wasn't talking all he did is

> point and grunt. We have a real hard road with him, he screamed the

> whole hlf hour for the the first year of therapy every time we took

> him. I could go on and on. Please write back, I'm looking forward to

> getting to know you.

>

> a

>

>

[Guest guest]

Hi a,

We live in Ohio, near Akron and the hospital is Children's Hospital

Medical Center.

I am very familiar with your area since my son lived in St. Louis for 4

years. The Mississippi River is awesome. We loved the tour ship and the

Arch and all the shops on the River. It's a fun city.

Take care, Patty, Grammy to and a bunch

[Guest guest]

a-

It seems many other kids in the apraxia group have

behavior issues (as well as fine motor) including my son

4.10. His behavior has, however, improved

dramatically since taking fish oil supplements. He will

now work with his speech therapist and with me on

different sounds and mouth movements. (This was

completely unheard of before. A behavior psychologist

at one time mentioned " Oppositional Defiance Disorder "

and referred us to a psychiatrist because he would not

do anything on command. When he had his first session

with her, he refused to point to any of the pictures she

was asking him to do, BUT would sniff the correct

response with his nose!)

Needless to say, he is no longer like this AT ALL.

Since fish oil, he is a happy, go-lucky guy and we all

couldn't be more thrilled!

Just a thought from a mom.

Amy

mom to 4.10 and 1.10

[Guest guest]

-

<< She is 5 months now and we can't even

get in to see the Dr. for another 3 weeks! I was so upset b/c I read

that if you diagnose and treat early, there is less time to wear the

helmet. Upon referral she was 4 mos and we can't get in to the

Neuro's office for 2!?!? >>

We had the same concern with our son Galen. At his checkups 1, 2, and 4

months, the doctors just made note of his flat spot. At his 6 month checkup,

the pediatrician said he needed to see the craniofacial specialist about

Plagiocephaly. When we called to schedule an appointment with the

specialist, we also were told that we couldn't get an appointment for 2

months. We were worried that we would be behind the ball.

Galen was casted for his STARband at 8 months, started wearing it at 8.5

months and now at 10.5 months we can see significant improvement. He should

have it off right about his 1 year birthday.

My recommendation is not to panic, see if you can get on a cancellation list

at the specialist's office (where they call you if someone has canceled their

appointment), and read up as much as possible on the condition, things to ask

the doctor, and insurance issues.

Good luck.

Lynette

Mom of Galen, 10.5 months

Overland Park, KS

[Guest guest]

,

Welcome to the group and let me assure you - you are among friends. We know

EXACTLY what you are going through! It's difficult, but managable! Yes, the

thought of your child in a helmet or band is scary, but believe me, they

really do not mind having them on and they just look adorable in their

" hats " ! Check out our files sections under member's pictures and you will see

pictures of some of the cutest babies in the world wearing their bands and

helmets.

If your baby starts the helmet/band at 6 months you will still see good

correction. However, I would suggest calling the neuro and really bugging the

office to get you in earlier. Ask to be on the waiting list to fill a

cancellation if possible. (if your schedule will allow) I would reccomend

calling every morning and asking if they have cancellations (again, if your

schedule will allow it). This is how I got my appt. moved up!

The neuro might recommend a CT scan or possibly x-rays to rule out

craniosynostosis. (It is possible that he will not recommend this) If the

neuro diagnoses plagio then you will be referred to an orthotist. The ortho

will take a plaster mold of your baby's head and make a helmet/band

customized for her. You will go back for a fitting after about 2 weeks and

the orthotist will have regularly scheduled re-checks for adjustments.

Everyone here can relate to what you are going through - we are here for

answers, support and friendship. Please ask anything and everything - being

informed about the condition empowers you and helps you to be the best

advocate for your baby! If you could let us know where you are located, it is

possible that we have a member in your area that can tell you more about the

treatment options available for your baby. (we have close to 900 members!)

Also, has your dr mentioned torticollis? If your baby favors one side she

might have tort and that requires PT to correct and will help with correcting

the plagio.

Good luck and I hope you will stick with us. This is a great group

of moms and dads and we are here for you!

Marci (Mom to )

Oklahoma

[Guest guest]

,

I agree with Marci, keep calling the neuro's office.

Ask for the doctor's secretary, this is how I got in

for an earlier appointment. I was told that the doc's

secretary is the only one that can fit you in.

Your daughter is young so you do have some time but

you are right, the earlier you start the better.

B., Charlotte

DOC grad 8/2/01

--- jennifer.butler@... wrote:

> Hi everyone. I am new to this group and decided to

> join after my ped.

> referred me to a neurosurgeon re: my daughter's

> flattening on the

> right side (she always favored). I was concerned

> about it at 2mos but

> he said it was mild and to rotate her. We did that

> and now we are

> going to a neurosurgeon. I am really nervous and

> dread the thought of

> her having to wear a helmet. She is 5 months now and

> we can't even

> get in to see the Dr. for another 3 weeks! I was so

> upset b/c I read

> that if you diagnos and treat early, there is less

> time to wear the

> helmet. Upon referral she was 4 mos and we can't get

> in to the

> Neuro's office for 2!?!?

>

> Anyway, do you all have any advise or ANYTHING you

> can tell me about

> this?

>

> Looking for new friends,

>

>

>

__________________________________________________

[Guest guest]

Our DS (Evan)also favored the right side and he was diagnosed with

mild torticollis (which is a tightening of the neck muscle). The

torticollis was the reason Evan favored one side and made

repositioning difficult. If you have difficulty repositioning, your

daughter may have torticollis. Our neurosurgeon had Evan follow a

toy as it was moved to the extreme left and right our son's view.

The extent to which Evan could turn his head to the right was

markedly better than his ability turning to the left. If you suspect

torticollis, you might try to get him in to see a physical therapist

who would be able to help you with stretching exercises. If

torticollis is an underlying problem, it is important to get it

cleared up. It's kind of a double whammy--not only does it give a

predisposition to turn a certain direction but the tight muscles help

to pull the plates in the head out of alignment. Here is one link

for torticollis: http://www.pedisurg.com/PtEduc/Torticollis.htm

On another note, if the band (or helmet) is recommended, there will

still be more waiting. We didn't decide the day he was seen and a

good month passed by the time the perscription was written, our

attempt to get pre-approval from the insurance company, receiving the

rejection of coverage letter from insurance, scheduling the fitting,

and waiting for the band to be custom made.

Good luck!

Beth Anne (Evan's Mom)

> Hi everyone. I am new to this group and decided to join after my

ped.

> referred me to a neurosurgeon re: my daughter's flattening on the

> right side (she always favored). I was concerned about it at 2mos

but

> he said it was mild and to rotate her. We did that and now we are

> going to a neurosurgeon. I am really nervous and dread the thought

of

> her having to wear a helmet. She is 5 months now and we can't even

> get in to see the Dr. for another 3 weeks! I was so upset b/c I

read

> that if you diagnos and treat early, there is less time to wear the

> helmet. Upon referral she was 4 mos and we can't get in to the

> Neuro's office for 2!?!?

>

> Anyway, do you all have any advise or ANYTHING you can tell me

about

> this?

>

> Looking for new friends,

>

[Guest guest]

Dear :

Everything is so scary in the beginning when you read all these posts, but

everything will work out for you! First off, I just recently went through the

same thing, and when the neurosurgeon couldn't see us in what seemed like

forever, I found another one that could. (But don't cancel the original

appointment either) Though you may live somewhere that doesn't have an

abundance of neurosurgeons, maybe just driving a bit farther could get you to

one. Ours is about an hour from our home, though I'm sure there are some

closer. In the mean time, repositioning is your best bet, keep her off that

flat spot as best you can. Our family has decided to use repositioning fully

and not get the helmet after all for our 7 month old son. Though every case

is different, what works for some doesn't necessarily work for others, no

matter how similar each story seems! Good luck and keep us updated on how

you're doing!

Eileen (and Frazier

SE Pennsylvania