Re: Husband and me disagree, please help!

[Guest guest]

Sange:

Hi! We went through somethig similar when our son Joe

was 2 1/2. First off, I would go to a developmental

pediatrician before going to a neurologist. A

developmental doctor will evaluate your son from

different perspectives. Our doctor, Dr. Agin, put

together a comprehensive plan for us to help Joe and

made recommendations for exams by specialists, like a

neurolgist, at the appropriate times. To me, a

developmental doctor is a good springboard to handle

issues from. I don't know how to explain it except to

say a developmental doctor will look at your whole

child, not just one piece of him.

My wife also did not want Joe to have a diagnosis

because she felt the PDD/apraxia label would follow

Joe for the rest of his life, that he would always be

treated as different because he was labeled in the

autistic spectrum. I have to admit there is some of

that danger when dealing with a school or a district.

The flip side, especially for us, is soemtimes the

diagnosis makes it easier or even possible to get

servces your child needs. We went to Dr. Agin to get

a final determination if our son was apraxic or not

after EI evaluators, a psychologist and at least two

speech therapists were unable to give us a definitive

answer. The PDD and apraxia diagnosis made it

possible for us to get oral motor therapy outside of

the school. At one point, in EI, we had 7 hours of

speech therapy (counting the oral motor) which we were

told was unheard of. The combination of diagnoses

allowed us to argue that our school district to keep

the level at 5 hours of speech during Joe's first year

of CPSE; he is now down to 3 hours due to his

improvement. Without the apraxia diagnosis, I doubt we

would have been given the services Joe needed to begin

talking. Our goal, set with Dr. Agin, is to have Joe

mainstreamed in the next 2-3 years.

So, while I don't personally agree with labels, a

diagnosis may be beneficial to you as a basis to

obtain services. There are people on this site whose

knowledge far exceeds mine on the subject of what it

means to walk into your EI or CPSE meeting with a

medical diagnosis versus not having one. Our personal

experience that although distasteful, the diagnoses

got Joe the services he needed when he needed them.

Hope this helps.

[Guest guest]

Go see the Ped Neuro - the earlier you receive some diagnoses, the

better. Think of it as a " ruling out " visit - ruling out apraxia (if

possible), brain damage, hearing difficulties, etc.. And, if the

neuro finds something of concern, you're addressing it early which is

unilaterally better. (Please correct me if I'm wrong here people!)

If it's not going to break you financially, I really do not see a

good reason not to go. Also (and this is me speaking as someone who

chose NOT to go through EI because of reports of the lack of decent

services in my area), you might benefit from seeing a ped neuro or

dev ped because they can get your insurance to pay for additional,

private services which might benefit your child more. In the end,

you and your husband know best.

Good luck!!

Marina

[Guest guest]

Hi-- if I were in your shoes, I would let several things determine

what I would do-- one would be, finances. Do I have health insurance

to cover the very pricey cost of a neurology appointment? If so,

then I would be more inclined to just go-ahead-and-do-it even if I

was happy with the progress he was making so far. I would also think

about the future-- would getting the diagnosis NOW be helpful when he

transitions to public school at age 3. From experience, it never

hurts to have your " ducks in a row " . Meaning, if they can't qualify

him under Developmental Delay, if you have a bonafide diagnosis of

either documented hearing impairment or another medical diagnosis,

then they can use that instead! With the hearing impairment, your

son could receive services under Hearing Impaired. With a medical

diagnosis, they could go with OHI or HI (Other Health Impaired or

Health Impaired depending on what your state calls it--some say OHI

some say HI). So if finances were OK, then I'd go ahead and do the

evaluation for the simple reason of having something to fall back on

if the school district comes to you and says, " he doesn't qualify " ,

then you can say, oh yes he does!

W

[Guest guest]

I totally agree with Marina on this one. This is exactly why we went

to a developmental pediatrician for our son. While we knew he had a

significant speech delay, we went just to " rule out " some things, and

just to know exactly what was going on. I figured if it was truly a

more serious neurological problem then we'd be referred to the

neurologist. Strangely enough, our initial response to getting

Drew's diagnosis of apraxia was one of relief and excitement. Why?

Because now we knew what was going on with him, why he wasn't making

that much progress in his EI services (and we have good EI services

where I live)...it all added up and made sense. Upon sharing the

information with EI services, we were able to make some tweaks in his

therapy, and we've seen a huge change in him. (That might also be

partially the EFAs, but I think it's a combination of revised therapy

and the EFAs). Since Drew is going to be transitioning to preschool

this summer, I am glad I did it now, so we knew what we were dealing

with, and now we know how to approach Drew and his learning so that

he makes significant progress.

If you can manage it, do it. It will give you peace of mind, no

matter the outcome, because in the end you will know what exactly you

are dealing with, and you'll have a better sense of how you need to

research and work with the diagnosis.

Hope this helps.

le - SAHM to Drew, 2 1/2, apraxia and DSI

[Guest guest]

Hi Sange,

PLEASE do not let this go! I am going to send you a

copy of an old post that I had posted on this site a

while ago, and also my son's web page addresses. He

quit talking at the age of one and at the age of 15

months I started searching for answers. Had I let him

go, he may have been paralyzed or who knows. In

February 2003 he had brain surgery. He has a chiari

malformation; which in lament's terms means that his

brain was being crowded due to a small skull. They

had to remove part of his skull. He will be three on

January 4th and I have him in the PPI preschool five

days a week. He started talking consistently about

two months after starting school. He has known sign

language since 15 months (my husband and I taught him)

and he almost never signs now.

If you have any questions please feel free to contact

me.

Kim Antolak (JJ's mom)

http://www.geocities.com/1pizzalady/JJSpage.html

http://www.geocities.com/1pizzalady/JJSpage2.html

http://www.geocities.com/1pizzalady/JJSpage3.html

[Guest guest]

Well, I had some one suggest I take to a specialist a few

years back but I was seeing progress and was still hoping all would

be resolved by the time he entered kindergarten.

Well Here I am with my little guy 5 and I see now end to his

treatment. Plus we see issue that didn't seem to be issues when he

was younger.

I wish I could have those two years back and would have taken him to

a developmental Ped when he was a toddler.

is now getting all the tests done.

Also, you may have to wait 3,4 or 5 months to get into see a

pediatric Neurologist. Make the appointment if you change your mind

or don't to take him you can always cancel.

I decided to get to a specialist back in April of 2003. It

took 5 months to get into see her, then I was refered to a ped

behavior center and OT for more evals. The OT eval was completed but

I couldn't get into the behavior center until Jan 2004. I

will go back to the Developmental Ped end of Feb to find out what are

plan of attack with be. It can be a long process.

I would recommend you take him. You will not regret it, but you may

regret it if you don't. (I am regretting it because I waited)

God Bless,

Heidi-SAHM to 8, 5 (DSI, Apraxia) 20 months (VUR,

Plagio/Tort, late talker in EI - speech 2X/wk PT 1X/wk)

--- In , " thdoy2 " <Thdoy2@a...>

wrote:

> Our son, Randy, is 2.4yo and been in early intervention since he

was

> 23 mos old. He has shown some progress, but still has no formal

> diagnosis from any of his therapists (OT, Aural Rehab & SLP). It

may

> apraxia, just a late talker or due to his mild-moderate hearing

> impairment (which normally doesn't affect a child's speech at this

> age).

>

> I say to just let the diagnosis go for now and be happy he is

making

> progress. My husband really wants a diagnosis and wants him to go

> see a pediatric neurologist. We both want what's best for our son,

> but are not in agreement here. Does anyone know what we should do?

> Thanx, Sange