daughter newly diagnosed

[Guest guest]

Hi everyone.

My name is Kristy and I have a daughter who has recently been given a

tentative diagnosis of apraxia. She is 2 years and 4 months old. The

speech/language therapist said that she thought that it was apraxia. I am

not feeling real confident in that diagnosis. She didn't seem too certain.

I will describe my child and if you have any comments please let me know.

Savannah is 2 years and 4 months old. There was not anything uncommon in her

delivery or birth that I am aware of (I have requested a copy of our hospital

records from her birth). The only thing that I can think of is that prior to

becoming pregnant I was on an antidepressant, Zoloft. When I found out that

I was pregnant I immediately stopped taking it. But from what I have read on

the website maybe my body was deficient in the EFA and she needs some now to

compensate for what my body did not give her. Don't know!!?? Anyway, she

has a few words. She can say mommy, daddy (which both came recently), help,

(her sister), gotta go, whats that, nana (banana), and of course NO.

She has alot of nonverbal skills to communicate. She has gestures and leads

me around the house to show me what she wants. She will take me to the

fridge and put my hand on the door if she is hungry or will put my hand on

the back door if she wants to go outside and play. She will take all of her

clothes off and her diaper if she wants to take a bath. She seems to have

control of her tongue. She can stick her tongue out on request and make

raspberry sounds with her tongue. Are children with apraxia suppose to be

able to do this? Her receptive language is not up to par either. She knows

a few body parts that she will point to sometimes. She will not point to

pictures in a book when asked. She can sometimes follow one step directions.

There is no way that she can follow two step directions. Sometimes I think

that she understands everything that I say and other times I am not sure that

she does. That is why the speech/language therapist is a little confused, I

think. She said that maybe she has apraxia and an auditory processing

disorder. We have an appointment with a pediatric audiologist tomorrow. But

from what I have read, isn't it hard to diagnosis processing disorders in

children so young?

I am so confused! If anyone has any thoughts on my situation I would greatly

appreciate their help. Thank you very much.

Many Blessings,

Kristy

[Guest guest]

My son who is 22 months old was also recently evaluated by a SLP who

suspects he has apraxia. He was also a very healthy baby and is overall

developing at his age level except for his verbal skills (diagnosed as 1

year delayed). Like your daughter, he doesn't say a whole lot of words (and

many are not clear) and he uses gestures to tell us what he needs (he

points, grunts, or take us to where he wants us to go). He doesn't seem to

have problems sticking his tongue out, although his blowing abilities needs

help. He also drools quite a bit and is very hyper. However, his receptive

skills are pretty good. He clearly understands what we say, he follows

directions, and he points to objects if we asked for it. From what I've

read, I get the impression that children with apraxia tend to have a wide

gap between their verbal skills and their receptive skills. It seems like

both the verbal and receptive skills of your daughter are about the same

level. From what I read, I also get the impression that if both the verbal

and receptive skills are about the same level that the child may just be

developmenta delayed. Maybe in that case she is just delayed? Please -

I'm not an expert; I'm just beginning to learn everything as well so don't

trust my word for it.

Like you, I'm not confident of having only 1 person evaluate my son. I know

he is definitely delayed and I want him to get as much help as soon as

possible. I'm not looking for anyone to tell me that everything is ok and

not to worry about it (which a LOT of people tell me that I'm just too

paranoid that my son will out grow it and that he's too young and this is

just normal --- this really irritates me!). But I do want others to

evaluate him to hear other opinions or recommendations and to see if the SLP

missed anything. I understand that diagnosing apraxia correctly is critical

that's why I want as many evaluations as I can possibly get.

My son has been approved for 2 hours/week speech therapy with the state

intervention program based on the SLP's evaluation and recommendation. I'm

definitely taking advantage of that, and he will start his therapies in a

couple weeks. On the side, I'm also going through my insurance company on

having my son evaluated by a pediatric neurologist. Additionally, I've

contacted ish Rite for help who has also scheduled my son for an

evaluation. (ish Rite is free and national - check it out if there's a

location near you.) And of course, being a member of this group list helps

educate me. The way I see it, there's no harm in getting as much help as

you can!

Good luck!

[ ] daughter newly diagnosed

Hi everyone.

My name is Kristy and I have a daughter who has recently been given a

tentative diagnosis of apraxia. She is 2 years and 4 months old. The

speech/language therapist said that she thought that it was apraxia. I am

not feeling real confident in that diagnosis. She didn't seem too certain.

I will describe my child and if you have any comments please let me know.

Savannah is 2 years and 4 months old. There was not anything uncommon in

her

delivery or birth that I am aware of (I have requested a copy of our

hospital

records from her birth). The only thing that I can think of is that prior

to

becoming pregnant I was on an antidepressant, Zoloft. When I found out that

I was pregnant I immediately stopped taking it. But from what I have read

on

the website maybe my body was deficient in the EFA and she needs some now to

compensate for what my body did not give her. Don't know!!?? Anyway, she

has a few words. She can say mommy, daddy (which both came recently), help,

(her sister), gotta go, whats that, nana (banana), and of course NO.

She has alot of nonverbal skills to communicate. She has gestures and leads

me around the house to show me what she wants. She will take me to the

fridge and put my hand on the door if she is hungry or will put my hand on

the back door if she wants to go outside and play. She will take all of her

clothes off and her diaper if she wants to take a bath. She seems to have

control of her tongue. She can stick her tongue out on request and make

raspberry sounds with her tongue. Are children with apraxia suppose to be

able to do this? Her receptive language is not up to par either. She knows

a few body parts that she will point to sometimes. She will not point to

pictures in a book when asked. She can sometimes follow one step

directions.

There is no way that she can follow two step directions. Sometimes I think

that she understands everything that I say and other times I am not sure

that

she does. That is why the speech/language therapist is a little confused, I

think. She said that maybe she has apraxia and an auditory processing

disorder. We have an appointment with a pediatric audiologist tomorrow.

But

from what I have read, isn't it hard to diagnosis processing disorders in

children so young?

I am so confused! If anyone has any thoughts on my situation I would

greatly

appreciate their help. Thank you very much.

Many Blessings,

Kristy

[Guest guest]

Hello Lyta,

I was 12 years old when diagnosed. I opted for the surgery because my older

sister was already being treated for scoliosis. Hers was so severe that I did

not want to look that bad. My first surgery started the first day of 8th grade.

I had a tutor for the entire school year. I would recommend you schedule the

surgery as soon as school is out. That will give her the summer to get back on

her feet so she doesn't miss out on her Freshman year.

If you don't do anything it will progress and it can progress rapidly. She may

have to wear a brace afterwards or a body cast. They do things so different

from when I had my first. I have had a total of 10 back surgeries and had to

retire on disability in 1999. I'm just now working with a pain management

doctor and had the first of a series of injections in the S1 joint. I am fused

from T1-L5 - everything except the sacrum.

Kids are resilient and bounce back much faster than adults. It won't be easy

but it will be worh it. She needs to follow the doctors orders. Walking after

my surgery was so beneficial.

My mother alway told me to never be embarrassed by being a little different and

hold my head high. I've done that my whole life and don't mind answering any

questions people have. It's the staring I hate.

Anyway, if you would like to chat more with me, I will be happy to help in any

way.

Janie

>

> Hello all,

> My 13 year old daughter was recently diagnosed when a chest x-ray was

performed to rule out pneumonia. General radiologist put the angle at 44 degrees

thoracolumbar curve.

>

> Sent immediately to Ortho Surg at good children's hospital. Evaled by the P.A.

for the surgeon and better x-rays obtained. new measurements at 48 degrees by

P.A., 49 by their radiologist, and 48 by ortho surgeon that specializes in

scoliosis. Also a second curve at 22 degrees in thoracic area higher up.

>

> Bracing not effective at this point per literature (National Scoliosis

Research Assoc) and not offered. Daughter is a Risser - 1 and a little over a

year post menarche. So skelatally immature. Ortho see 11 degrees rotation with

scoli meter, one hip is pulled up and right shoulder blade pokes out. Ribs are

turned.

>

> Anyway, surgeon said surgery is in her future. Now, 6 months, a year or 5. It

is really up to her. Would rather fix a 50 curve than an 80 degree so would not

like it to progress.

>

> Since high school starts next year and she is Highly Academically competative,

we are thinking go ahead and do now and be done with it. Waiting to put us into

the middle of high school and then a bad progression etc. Surgeon discussed all

of this with us. Seemed interested in her life and the impact of surgery on her

schedule.

>

> 2nd opinion surgeon (well known)- very very hurried, spent little to no time

talking to our daughter. No medical history obtained, required another x-ray-

then hand measured the curve at 41. Told us she should get a brace in the hopes

it will hold her at 41 until skeleton matures. But most likely (75% chance) she

will need surgery within the year. But do brace first. Totally dismissed our

concerns about timing and school. Told us they were non-issues. Kids do great

and it really won't mess up any of school etc.

>

> Are we wrong to consider how this all impacts her life and choose a time that

is more convenient? Any thoughts or experiences appreciated.

>

> Lyta

>

[Guest guest]

I don't think you are wrong. I had my initial surgery in 6th grade. In my

opinion, I would go ahead with the surgery before high school. My daughter also

had surgery when she was 12. She is now 18 and a sophomore in college. She has

not had any problems because of the surgery.

Peggy

Sent from my Verizon Wireless BlackBerry

Daughter newly Diagnosed

Hello all,

My 13 year old daughter was recently diagnosed when a chest x-ray was performed

to rule out pneumonia. General radiologist put the angle at 44 degrees

thoracolumbar curve.

Sent immediately to Ortho Surg at good children's hospital. Evaled by the P.A.

for the surgeon and better x-rays obtained. new measurements at 48 degrees by

P.A., 49 by their radiologist, and 48 by ortho surgeon that specializes in

scoliosis. Also a second curve at 22 degrees in thoracic area higher up.

Bracing not effective at this point per literature (National Scoliosis Research

Assoc) and not offered. Daughter is a Risser - 1 and a little over a year post

menarche. So skelatally immature. Ortho see 11 degrees rotation with scoli

meter, one hip is pulled up and right shoulder blade pokes out. Ribs are turned.

Anyway, surgeon said surgery is in her future. Now, 6 months, a year or 5. It is

really up to her. Would rather fix a 50 curve than an 80 degree so would not

like it to progress.

Since high school starts next year and she is Highly Academically competative,

we are thinking go ahead and do now and be done with it. Waiting to put us into

the middle of high school and then a bad progression etc. Surgeon discussed all

of this with us. Seemed interested in her life and the impact of surgery on her

schedule.

2nd opinion surgeon (well known)- very very hurried, spent little to no time

talking to our daughter. No medical history obtained, required another x-ray-

then hand measured the curve at 41. Told us she should get a brace in the hopes

it will hold her at 41 until skeleton matures. But most likely (75% chance) she

will need surgery within the year. But do brace first. Totally dismissed our

concerns about timing and school. Told us they were non-issues. Kids do great

and it really won't mess up any of school etc.

Are we wrong to consider how this all impacts her life and choose a time that is

more convenient? Any thoughts or experiences appreciated.

Lyta

[Guest guest]

Hi Lyta....

You raise a number of issues.

When a curve is measured there is a 5 degree +/- error possibility. Some

surgeons recommend surgery at 40 degrees, others not until the curve is well

over 50 degrees. If the major curve is in the thoracic spine 40 is VERY often

considered. If the major curve is in the lumbar spine the curve can even be as

high as 60 to 65 degrees before surgery is considered. Pain is often a deciding

factor (Teens and pre-teens often DO NOT have pain. Adults often DO have pain).

The brace most often used these days (a Thoraco-Lumbo-Sacral-Orthosis (TLSO))

is much easier to wear (easier to " hide " under cloths), and therefore better

compliance by teens than the brace used prior to the late 1970's (a

Cervico-Thoraco-Lumbo-Sacral-Orthosis (known as a Milwaukee brace). Another

bracing option is the ton Bending Brace (often called a “nighttimeâ€

brace as it is only worn while sleeping).

You said your daughter is 13 years old, and still has a number of years of

growth remaining. You said one of the doctors suggested getting a brace in the

hopes it will hold her at 41 until skeleton matures. This may be a good idea as

surgery at 13 could limit her growth (she is probably too old for " growth rods "

which are often used for very young children, and require multiple surgeries).

Surgery at 15 or 16 would allow more growth. I had my surgery at age 26 (well

past " Harrington Rod " days). I wore a Milwaukee Brace (than a TLSO soon after it

was developed)--from mid 10th grade through Sophomore year of college. Two high

school classmates had " Harrington Rod " surgeries. One during 9th grade and the

other following 10th grade. " Harrington Rods " have not been used since 1984 due

to now known issues. The recuperation often required up to 6 months of total bed

rest. The " newer " spinal instrumentation methods have the patient out of bed

within 2 to 3 days. Adults are often back to work within 3 to 6 months, and

teens are often back to school within 3 to 6 weeks. Therefore, your daughter

could have her surgery during the summer months and miss no school.

The following web sites would provide more information: Scoliosis

Association--http://www.scoliosis-assoc.org/ and the National Scoliosis

Foundation--http://www.scoliosis.org/

Hope this helps!!

S.

Daughter newly Diagnosed

Hello all,

My 13 year old daughter was recently diagnosed when a chest x-ray was performed

to rule out pneumonia. General radiologist put the angle at 44 degrees

thoracolumbar curve.

Sent immediately to Ortho Surg at good children's hospital. Evaled by the P.A.

for the surgeon and better x-rays obtained. new measurements at 48 degrees by

P.A., 49 by their radiologist, and 48 by ortho surgeon that specializes in

scoliosis. Also a second curve at 22 degrees in thoracic area higher up.

Bracing not effective at this point per literature (National Scoliosis Research

Assoc) and not offered. Daughter is a Risser - 1 and a little over a year post

menarche. So skelatally immature. Ortho see 11 degrees rotation with scoli

meter, one hip is pulled up and right shoulder blade pokes out. Ribs are turned.

Anyway, surgeon said surgery is in her future. Now, 6 months, a year or 5. It is

really up to her. Would rather fix a 50 curve than an 80 degree so would not

like it to progress.

Since high school starts next year and she is Highly Academically competative,

we are thinking go ahead and do now and be done with it. Waiting to put us into

the middle of high school and then a bad progression etc. Surgeon discussed all

of this with us. Seemed interested in her life and the impact of surgery on her

schedule.

2nd opinion surgeon (well known)- very very hurried, spent little to no time

talking to our daughter. No medical history obtained, required another x-ray-

then hand measured the curve at 41. Told us she should get a brace in the hopes

it will hold her at 41 until skeleton matures. But most likely (75% chance) she

will need surgery within the year. But do brace first. Totally dismissed our

concerns about timing and school. Told us they were non-issues. Kids do great

and it really won't mess up any of school etc.

Are we wrong to consider how this all impacts her life and choose a time that is

more convenient? Any thoughts or experiences appreciated.

Lyta

[Guest guest]

Peggy,

Thanks for the feedback. I bet she was glad to get it out of the way.

Lyta

From: Scoliosis Treatment

[mailto:Scoliosis Treatment ] On Behalf Of

jpgunlimited@...

Sent: Wednesday, February 09, 2011 2:13 PM

Scoliosis Treatment

Subject: Re: Daughter newly Diagnosed

I don't think you are wrong. I had my initial surgery in 6th grade. In my

opinion, I would go ahead with the surgery before high school. My daughter

also had surgery when she was 12. She is now 18 and a sophomore in college.

She has not had any problems because of the surgery.

Peggy

Sent from my Verizon Wireless BlackBerry

Daughter newly Diagnosed

Hello all,

My 13 year old daughter was recently diagnosed when a chest x-ray was

performed to rule out pneumonia. General radiologist put the angle at 44

degrees thoracolumbar curve.

Sent immediately to Ortho Surg at good children's hospital. Evaled by the

P.A. for the surgeon and better x-rays obtained. new measurements at 48

degrees by P.A., 49 by their radiologist, and 48 by ortho surgeon that

specializes in scoliosis. Also a second curve at 22 degrees in thoracic area

higher up.

Bracing not effective at this point per literature (National Scoliosis

Research Assoc) and not offered. Daughter is a Risser - 1 and a little over

a year post menarche. So skelatally immature. Ortho see 11 degrees rotation

with scoli meter, one hip is pulled up and right shoulder blade pokes out.

Ribs are turned.

Anyway, surgeon said surgery is in her future. Now, 6 months, a year or 5.

It is really up to her. Would rather fix a 50 curve than an 80 degree so

would not like it to progress.

Since high school starts next year and she is Highly Academically

competative, we are thinking go ahead and do now and be done with it.

Waiting to put us into the middle of high school and then a bad progression

etc. Surgeon discussed all of this with us. Seemed interested in her life

and the impact of surgery on her schedule.

2nd opinion surgeon (well known)- very very hurried, spent little to no time

talking to our daughter. No medical history obtained, required another

x-ray- then hand measured the curve at 41. Told us she should get a brace in

the hopes it will hold her at 41 until skeleton matures. But most likely

(75% chance) she will need surgery within the year. But do brace first.

Totally dismissed our concerns about timing and school. Told us they were

non-issues. Kids do great and it really won't mess up any of school etc.

Are we wrong to consider how this all impacts her life and choose a time

that is more convenient? Any thoughts or experiences appreciated.

Lyta

[Guest guest]

Thanks Janie, it is good to connect with people who have been through it.

Lyta

From: Scoliosis Treatment

[mailto:Scoliosis Treatment ] On Behalf Of jm22553

Sent: Wednesday, February 09, 2011 1:52 PM

Scoliosis Treatment

Subject: Re: Daughter newly Diagnosed

Hello Lyta,

I was 12 years old when diagnosed. I opted for the surgery because my older

sister was already being treated for scoliosis. Hers was so severe that I

did not want to look that bad. My first surgery started the first day of 8th

grade. I had a tutor for the entire school year. I would recommend you

schedule the surgery as soon as school is out. That will give her the summer

to get back on her feet so she doesn't miss out on her Freshman year.

If you don't do anything it will progress and it can progress rapidly. She

may have to wear a brace afterwards or a body cast. They do things so

different from when I had my first. I have had a total of 10 back surgeries

and had to retire on disability in 1999. I'm just now working with a pain

management doctor and had the first of a series of injections in the S1

joint. I am fused from T1-L5 - everything except the sacrum.

Kids are resilient and bounce back much faster than adults. It won't be easy

but it will be worh it. She needs to follow the doctors orders. Walking

after my surgery was so beneficial.

My mother alway told me to never be embarrassed by being a little different

and hold my head high. I've done that my whole life and don't mind answering

any questions people have. It's the staring I hate.

Anyway, if you would like to chat more with me, I will be happy to help in

any way.

Janie

>

> Hello all,

> My 13 year old daughter was recently diagnosed when a chest x-ray was

performed to rule out pneumonia. General radiologist put the angle at 44

degrees thoracolumbar curve.

>

> Sent immediately to Ortho Surg at good children's hospital. Evaled by the

P.A. for the surgeon and better x-rays obtained. new measurements at 48

degrees by P.A., 49 by their radiologist, and 48 by ortho surgeon that

specializes in scoliosis. Also a second curve at 22 degrees in thoracic area

higher up.

>

> Bracing not effective at this point per literature (National Scoliosis

Research Assoc) and not offered. Daughter is a Risser - 1 and a little over

a year post menarche. So skelatally immature. Ortho see 11 degrees rotation

with scoli meter, one hip is pulled up and right shoulder blade pokes out.

Ribs are turned.

>

> Anyway, surgeon said surgery is in her future. Now, 6 months, a year or 5.

It is really up to her. Would rather fix a 50 curve than an 80 degree so

would not like it to progress.

>

> Since high school starts next year and she is Highly Academically

competative, we are thinking go ahead and do now and be done with it.

Waiting to put us into the middle of high school and then a bad progression

etc. Surgeon discussed all of this with us. Seemed interested in her life

and the impact of surgery on her schedule.

>

> 2nd opinion surgeon (well known)- very very hurried, spent little to no

time talking to our daughter. No medical history obtained, required another

x-ray- then hand measured the curve at 41. Told us she should get a brace in

the hopes it will hold her at 41 until skeleton matures. But most likely

(75% chance) she will need surgery within the year. But do brace first.

Totally dismissed our concerns about timing and school. Told us they were

non-issues. Kids do great and it really won't mess up any of school etc.

>

> Are we wrong to consider how this all impacts her life and choose a time

that is more convenient? Any thoughts or experiences appreciated.

>

> Lyta

>

[Guest guest]

>

> Are we wrong to consider how this all impacts her life and choose a time that

is more convenient? Any thoughts or experiences appreciated.

>

> Lyta

>

I am so there with you on this one, my daughter is 13, one year post op and we

have found out she needs additional surgery to correct a curve in the T1 area as

well. We are still waiting for the office to call and schedule and it has been a

few months, so I kind of feel like let it be for a bit so she can finish all of

this 8th grade year, she missed almost an entire sememster in 7th last year

after the surgery. We do not want to schedule during the summer, in case she is

delayed starting 9th grade, that would be very hard for her, in a new school.

Also she has her treasured choir concerts she missed last year and she does not

want to miss this spring. Tough tough tough....Taking the impact of how this

will affect her socially and her grades is so important at this age. Absolutly

you and your daughter should try to find a time that she feels is more

comfortable, you have a window to work in, keeping in mind they heal better at

this age. My daughter had a 70 degree curve at diagnosis, 6 months later she was

almost 80 degrees so we were not able to wait much longer on the first one, the

decision was made for us, but deciding when to do the second one is so hard. On

one hand my daughter just wants to get it over with, she has been down this road

and knows what is involved, and on the other hand she wants so much to pretend

she is just like her friends, and ignore it. Good luck with your daughter, no

matter what you are told, go with your instinct you know what is the right thing

to do.

na