overwhelmed and frustrated :-(

[Guest guest]

A couple of weeks ago I introduced myself and my son, Larsyn. This journey is

relatively

new to us. He is 26 months old and has been in EI since 19 months for severe

speech

delay, sensory issues and hypotonia. He has not been diagnosed (as of yet) with

Autism or

apraxia. He has no true words, just some babbling and about 5 approximations. He

doesn't seem to have issues with receptive speech. His SLP doesn't feel

comfortable

diagnosing him with apraxia yet, because of his other issues. But from reading

The Late

Talker and lurking on this board, I truly believe he is apraxic ( and possibly

somewhere on

the autism spectrum).

His EI ( Regional Center of Orange County) has been awesome so far. Everything I

have

asked for he has gotten. Speech 3x's week/ 2 hrs day (group-he was in individual

but we

changed him before I knew about Apraxia) and 2 hours of OT/week. He will be

transitioning back over to 4x/week/30 min individual speech sometime next month.

His

OT works with his sensory issues and oral motor (he is a major drooler, can't

pucker, blow

or lick top of lips, always has mouth open). Two weeks ago I caved in and

started him on

NN Omega 3/6/9 liquid (1/4 tsp). Since he was 6 months old I gave him a vegan

omega 3

(we are strict vegetarians, so giving him fish oil has been traumatic for me!).

So far I don't

see too much of a difference.

I finally got an appt with a pediatric neurologist (Oct 23rd!) and luckily got

an appt this

Tuesday with a developmental pediatrician (at 4OCKIDS which specializes in

Autism ).

I am fighting with my HMO and medical group over that appt which will cost

$500-1500! I

am going to appeal their denial. So #$%@* Frustrating!!! Next year we will

switch to a PPO

so hopefully we won't have this problem.

Anyways, my question is what should I expect from the developmental ped. appt.

What

questions should I ask? What medical tests or labs should I ask about. His

regular ped.

talked about genetic testing, but she wanted to wait until the neuro and

developmental

ped assessed him.

My personal back ground is in Trauma/Surgical ICU Nursing (was a nurse manager,

but

quit almost 5 years ago to stay home with my boys). I also am a certified Public

Health

Nurse. Even though I am not a total lay person, I feel at loss when it comes to

all of this!

I don't really care what the diagnosis is, I just want to do what is right for

him and get the

services he needs.

Reading this board is the only time I really don't feel alone in this journey,

so THANK YOU!

-Jenna RN,BSN,PHN