New to the Group

[Guest guest]

Hello,

I am new to the group and have not posted any messages. I have been

reading

many messages over the last few days. Wow! It has been overwhelming

but at

the same time really great ideas and thoughts on issues. I would

like to just tell you about my son and hope this helps or maybe

someone will be able to give us some advice. I hope to not make this

a

lengthy email.

Our son will be 5 yrs old in March. He has Apraxia and

Hypotonia.

He is non-verbal. He trys very hard to say many words but it is very

difficult for him. There are just a small hand full of words

everyone can

understand. He knows 80-100 words in sign lang. He does not use them

on a

constant basis though. It is difficult for him to do 2-3 words of

sign

lang. in a roll. That is that motor planning problem that most of

our kids

seem to have with apraxia and hypotonia. He wears glasses for

farsightedness and has since he was 17 mos old. He has good corrected

vision, but I think all kids with farsightedness or nearsightedness

have

trouble tracking and focusing on things. He did not walk until he

was 2 yrs

+. Still today he has to hold on to a rail or someone to go up and

down

steps. He can run somewhat it is just awkward. We still get so

nervous

when he is outside playing and running around the yard. We just know

at

anytime he could just trip or loose his footing. He has a hard time

playing on slides and swings because of his strength, coordination and

endurance. He loves being around other kids. He is very vocal with

sounds

and trys to say many things that seem like sentences and conversation

but

just makes no sense to others. He has been in a inclusive pre-school

for 2

yrs now. We like that idea so he would have typical kids as role

models.

The class is 60/40 spilt with the 60% being special needs. Of course

he

gets his services of speech, occupational and physical therapy at his

school

and we also take him privately. He will be going on to the public

schools

next yr. To the CCK class. His receptive lang. has always seemed

good.

However in my opinion since he is mainly non-verbal it just brings

down the

intellangce level. So he does not do all the early learning things

that

most kids do. He does use picture board at school to participate in

commenting, requesting etc... and has caught on to that well.

He did have some issues with chewing food etc when he was between 1-2

yrs

old but got through that. Some other sensory issues like getting his

hair

cut, cutting nails are still hard but getting better (slowly). He has

sensitive feet too. He had intoeing and wore special shoes and still

wears

inserts but his feet are looking good now. except that he still curls

his

toes because he has sensitive feet. Overall he is a very happy,

healthy

boy. As far as behavior well, He is an only child. So that might

explain

some of it. I know some are thinking that is just and excuse and so

forth.

But we will admit we are guilty of spoiling him and paying for it in

some

ways. But we are just human.

has seen many different types of drs and has many different

tests:

hearing tests (abr), of course routinely gets eyes cks, 3 different

neurologist, mri, dna testing for genetic disorders and muscular

diseases,

developmental pedi, many speech,occupational and phy therapists,

orthopedic

drs, reason for so many because we lived in Dallas until he was 2

1/2 and

that is where he got most of his tests done and then we moved to

Raleigh, nc

and had to kinda start over with therapist and such.

As far as Dx's it just depends on the dr I think. One neurologist

said no

to CP and the other said yes. But one thing I have learned is that

CP is

such a broad term and is used when it is just obvious and used when

it is

needed for insurance reasons, or just because there is just not much

to say.

The one thing every specialist did agree on was just time will tell.

Not

meaning do nothing during that time but do everything you can and

hope for

the best. I really have not come to terms with that statement,

because I

just think, pray and hope that someday will talk! We do

cont. to

have him checked out from time to time by a neurologist or

developmental

pedi. for the same reasons of hope that someday someone will just

say not

to worry anymore and that will be a typical child and will

grow up to

be a providing grown man.

We did start on coromega 1 pak a day over a yr ago. No big

change I

would mention. I am going to try the Proefa that I have been reading

about

from others. Since the coromega only has the omega 3 and not omega 6

maybe

that will help. I will say as many specialists my son has seen, and

I do

feel he saw some of the best when we lived in Dallas, no one was

really

excited about EFA's not sure why. But I am excited that maybe it will

help

one day.

I hope I did not make this too long. If anyone lives in Raleigh,NC

and has

thoughts, names of drs they have been to that they like, schools they

have

had experiences with and all the many things we parents look into

please let

me know. If I can help anyone with anything let me know. Have a

great

Day!!!

(mahanamanda@...)

[ ] Apraxia or Cerebral Palsy??

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> My two year old son has a significant speech delay. We have been

> working with early intervention for about a month and a half. We

> just had the formal eval. last week. It was found that he has a

> Speech ability of a 14 month old, social skill at a 12 month old and

> gross motor at a 21 month old.His receptive is normal. He also has

> low muscle tone in his jaw. He says about 8 words and only about 3

> are understandable. He does not make any two word combinations. He

> overstuffs his mouth when eating, he grunts and points. I asked

> specifically if it was Apraxia. The speech therapist said she could

> not make that diagnoses at this time. ( I thought he showed so many

> signs.I found out yesterday from a developmental specialist that he

> probably has low muscle tone in his back as well, he sits very

> strange. I took him for a well check this morning and the Dr. said

> he might have a mild case of cerebral palsy. Has anyone ever had or

> heard of apraxia being misdiagnosed as mid cerebral palsy? I am so

> confused. We are continuing with speech therapy, early intervention

> and home exercises.

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