Re: Good News/long

[Guest guest]

Pam,

I to had to wait 6months for Abby's appt to see the Neuro-

developmental Pediatrician. I'm in NJ, we went to Childrens'

Specialized Hospital in Ocean County, I am curious where you are, I

guess the waiting period is about the same all over.

As for her diagnoses of Static Encephalopathy, when the Dr.

originally told us she was diagnosing her with this, she said,

" its more for Insurance and school purposes. When ins.co or schools

see apraxia, they more likely to say no to treatment or services, and

this diagnoses bares more weight. " She told us the name can come

across very scarey, but not to be to concerned.

At the time, I had no idea what the term Static Encephalopathy meant.

When we came home, I immediately looked it up. According to Easter

Seals, It's really is a diagnoses given to children born with Fetal

Alcohol Syndrome, and it referes to permenant or unchanging brain

damage. When I first read this I was floored! How could the Dr do

this, the Ins. Co or schools are going to read this and think what an

awful mother/person I am to consume alcohol and cause this to my

child! I DID NOT DO THIS. But then I remembered what the Dr. said

with recieving treatment/therapy, and not to worry. So I had to take

a breather and sit back and think. I know what I did, and didn't do.

And that I WANT THE BEST for Abby. And what they think of me, doesn't

really matter. Just as long as she gets treatment.

I sympathize with you in waiting for a dx, and the not knowing of

what is exactly wrong and how to treat. Other then " developmental

delay " I assume your Ian is early intervention..

One thing I have learned, having a Dx. does change things a lot.

HOWEVER, Provided they have the " providers " to provide. Example:

Once I got the dx for Abby, and I called my service cordinator, she

told me, I can change it right now on paper, but you could be waiting

3-6 months for a qualified SLP to come to your house to provide ST

for Abby. Because they are so busy with other kids/cases. And by then

Abby will have " aged out " of the program.

FYI.. Abby hasn't received ST through EI, because she didn't have a

Dx for her speech, or lack of. Until just recently.

She receives " Developmental Intervention Therapy " She started with an

OT, till she went out on maternity leave, she now has an SLP, still

providing " DI " , her SLP, doesn't know about Apraxia though.

So AGAIN, I stress to myself (and others) just to keep going forward,

and not to give up.

Best of luck to you and Ian.

Dawn

> YEAH Yeah yeah. Yes, the welcoming committee must have been asleep

> at the wheel to miss this post!!! What wonderful news for Abby. I

> am stunned at the services you were able to secure.

>

> We are visiting a pediatric neurologist in the late summer/early

> fall. It has been an 8 month waiting period to get in to his

> office! I am hopeful that his diagnosis will also secure more

> services for us. At this point, Ian has no real diagnosis. He was

> given " mixed developmental delay disorder " at the age of 26

months.

> That was just the best choice the doc had on the form (the eval was

> to rule in/out autism) given to him by the county program.

>

> Static encepholopathy? What does that exactly mean for Abby?

>

> Thanks so much for the news.

>

> Pam

>

[Guest guest]

We are in Bellingham, WA; on the coast. Far, far away from NJ.

The word " encepholopathy " scares me. I'm glad it is more for

treatment purposes than reality. It just sounds like she has damage

that will always remain 'damaged'.

Ian has been in EI since he was about 25 months old. We were not

given any services through EI aside from a caseworker. Based on his

speech delay he qualified for the Dept of Developmental

Disabilities. They had a program (play group) we could utilize but

it conflicted with the schedule of the therapies I set up on my

own. Looking back, I should have used them. At the time, I was

just of the mindset that I will do this myself! The county seemed

to wash their hands of us once Ian qualified for DD. I never saw my

son as DD so I was reluctant to go there. Avoidance technique?

Not sure (since I still don't view him that way).

So, we have had ST 2 hrs/week and OT 2 hrs/week for about a year.

All paid out of pocket. Now that Ian is in the school district, he

gets group therapy (whatever that means) for about 20 mins, once a

week. They will keep him after school on Fridays for 30 mins for

1:1 tx starting this Friday.

I really do hope that a dx will give us some leverage. I would like

to offset some of the $12,000 we spent last year on therapy. We are

ahead of that pace this year!

Thank you for the great explanation. One more thing: did they do

any MRI or other test?

Pam

, " jerzmomof4 " <Jerzmomof4@a...>

wrote:

> Pam,

> I to had to wait 6months for Abby's appt to see the Neuro-

> developmental Pediatrician. I'm in NJ, we went to Childrens'

> Specialized Hospital in Ocean County, I am curious where you are,

I

> guess the waiting period is about the same all over.

>

> As for her diagnoses of Static Encephalopathy, when the Dr.

> originally told us she was diagnosing her with this, she said,

> " its more for Insurance and school purposes. When ins.co or

schools

> see apraxia, they more likely to say no to treatment or services,

and

> this diagnoses bares more weight. " She told us the name can come

> across very scarey, but not to be to concerned.

> At the time, I had no idea what the term Static Encephalopathy

meant.

>

> When we came home, I immediately looked it up. According to Easter

> Seals, It's really is a diagnoses given to children born with

Fetal

> Alcohol Syndrome, and it referes to permenant or unchanging brain

> damage. When I first read this I was floored! How could the Dr do

> this, the Ins. Co or schools are going to read this and think what

an

> awful mother/person I am to consume alcohol and cause this to my

> child! I DID NOT DO THIS. But then I remembered what the Dr. said

> with recieving treatment/therapy, and not to worry. So I had to

take

> a breather and sit back and think. I know what I did, and didn't

do.

> And that I WANT THE BEST for Abby. And what they think of me,

doesn't

> really matter. Just as long as she gets treatment.

>

> I sympathize with you in waiting for a dx, and the not knowing of

> what is exactly wrong and how to treat. Other then " developmental

> delay " I assume your Ian is early intervention..

> One thing I have learned, having a Dx. does change things a lot.

> HOWEVER, Provided they have the " providers " to provide. Example:

> Once I got the dx for Abby, and I called my service cordinator,

she

> told me, I can change it right now on paper, but you could be

waiting

> 3-6 months for a qualified SLP to come to your house to provide ST

> for Abby. Because they are so busy with other kids/cases. And by

then

> Abby will have " aged out " of the program.

>

> FYI.. Abby hasn't received ST through EI, because she didn't have

a

> Dx for her speech, or lack of. Until just recently.

> She receives " Developmental Intervention Therapy " She started with

an

> OT, till she went out on maternity leave, she now has an SLP,

still

> providing " DI " , her SLP, doesn't know about Apraxia though.

> So AGAIN, I stress to myself (and others) just to keep going

forward,

> and not to give up.

>

> Best of luck to you and Ian.

> Dawn

>

[Guest guest]

Pam,

No MRI or any type of scans, or blood work were done at our visit to

the neuro-dev. ped. We did fill out a form regarding ADD/ADHD. As

well as answer questions regarding milestones of growth and

development.

The Fellow Dr. gave her a typical Pediatrician evaluation, at least

it appeared that way. She also tried to get Abby to do certain

things, like color, build blocks, walk, run, " talk " LOL.

I brought with me all her evaluation reports from EI, the school, her

regular Ped, audio's, anything and everything that I had. I also went

in pretty well informed on Apraxia, and was able to tell them what I

see, or don't see in Abby.

The fellow Dr had left us alone in the exam room for about 45minutes.

I assume she was consulting with the neuro-dev. ped.

The Fellow Dr, and the Neuro came back in and continued to evaluate

and examined her by prompting her to talk, or to do oral motor

skills,etc. and also checked for hypotonia. After about 5minutes, the

Neuro-dev.ped gave me her Dx.

I certainly dont look forward to having to pay that amount in

treatment for Abby. Not to be nosey, but do you have Insurance? Or

were they unwilling to cover those services?

And also If you dont view Ian as " DD " what do you view him as, aside

from a beautiful, healthy boy!

I started off with Abby thinking, " she just doesn't/cant talk "

Now Im slowly moving towards, " Neurologically disabled " However,

still a healthy, beautiful, loving little girl.

And on the topic of therapy for him, IF he is Dx. with Apraxia, do

not go for the " group therapy " From what Ive read, it can be more

harm then good. And having that little piece of paper with the Dx,

will do wonders for you to get the right services. Just don't give up!

> We are in Bellingham, WA; on the coast. Far, far away from NJ.

>

> The word " encepholopathy " scares me. I'm glad it is more for

> treatment purposes than reality. It just sounds like she has

damage

> that will always remain 'damaged'.

>

> Ian has been in EI since he was about 25 months old. We were not

> given any services through EI aside from a caseworker. Based on

his

> speech delay he qualified for the Dept of Developmental

> Disabilities. They had a program (play group) we could utilize but

> it conflicted with the schedule of the therapies I set up on my

> own. Looking back, I should have used them. At the time, I was

> just of the mindset that I will do this myself! The county seemed

> to wash their hands of us once Ian qualified for DD. I never saw

my

> son as DD so I was reluctant to go there. Avoidance technique?

> Not sure (since I still don't view him that way).

>

> So, we have had ST 2 hrs/week and OT 2 hrs/week for about a year.

> All paid out of pocket. Now that Ian is in the school district, he

> gets group therapy (whatever that means) for about 20 mins, once a

> week. They will keep him after school on Fridays for 30 mins for

> 1:1 tx starting this Friday.

>

> I really do hope that a dx will give us some leverage. I would

like

> to offset some of the $12,000 we spent last year on therapy. We

are

> ahead of that pace this year!

>

> Thank you for the great explanation. One more thing: did they do

> any MRI or other test?

>

> Pam

[Guest guest]

Insurance. Yes, we do have it. Our policy only covered 24 visits

last year. That is PT, OT and ST combined. So, we were going

3x/week and the coverage lasted 8 weeks. They only paid 80% at that

point, too.

This is funny: my husband is a doctor.

My husband's group just switched insurance companies. I am hoping

that this company, and a better diagnosis/billing code, will get us

better coverage. We are lucky to have the $$ to cover these bills,

but it is reaching the level where it takes away from other things

like college funds, retirement, etc. Either way, we will continue.

Our last SLP evaluation encouraged us to up Ian's therapy to 25

hours/week. She feels he could be PDD-NOS. I can somewhat see why

she felt that way: we were in a little office space for 2.5 hours

and she had never met Ian before. Perhaps we can use her report for

more services, too. She cannot diagnose the PDD (she is wrong,

anyway!), and could not rule in/out Apraxia. " Ian is a puzzle " ...

we have heard that so many times!

I don't know why I hesitate to see Ian as DD. I think it is because

he is physically " typical " . I always thought of DD as having some

outward appearance of a problem... either CP, Down Syndrome, altered

gait, etc. I know that is not always the case, it is just a mental

hurdle I have yet to leap. Maybe a way to keep me from fully

losing it?!!! I have always thought of DD as a life long state and

all signs point to otherwise with Ian.

Ian is really an incredible little boy. For having such minimal

language, he remains a happy and loving little boy who is not easily

frustrated. His sense of humor is perfect. I think he laughs all

day. I feel so lucky to have him. This kid has grounded me like no

other has. I find that each child had their purpose in my heart:

Noah filled it, Olivia melted it, and Ian made it bigger.

It doesn't look like we will get an Apraxia diagnosis. Ian seems to

have some typically developing language. He also has some classic

apraxic speech. Can you have partial apraxia?

Man, the older two kids are really loud upstairs. I've got to go

before they wake up Ian.

Thanks for all the info and questions.

Pam