NJ newcomer looking for advice

[Guest guest]

Hi all,

I'm a newcomer to this site, and could really use some information and advice.

While the information I've been reading is so helpful, I'm finding it also very

overwhelming. Let me start with some background…

My son is now 25 months old, and was recently diagnosed with Apraxia.

was born 6 weeks early, and spent the first 11 days in the NICU. He

received oxygen and CPAP initially, but was taken off within the first 12 hours.

Otherwise, his birth was uneventful. He has a definite history with ear

infections (first one at 6 months, second one at 9 months, third one at 11

months, and fourth one at 20 months) and had tube surgery at the time of his

third ear infection. We know he had fluid in his ears from at least 6 months

until the time of his tube surgery at 11 months – we were required by the state

to pass a hearing test due to his high risk from being in the NICU, and he

failed twice prior to the tube surgery due to the fluid. However, they

performed an ABR test while he was under anesthesia and he passed.

In hindsight, probably never babbled much as a baby, but being first

time parents we didn't realize it. He said " ma ma " and " da da " at 14 months,

but not much more, and lost that at 17 months when he started to point at

everything, and later started to pull on us and lead us to what he wanted. We

brought this to our pediatrician's attention at his 18 month check up, and she

referred us to Early Intervention, but suggested we wait a month or two as he

was premature (in other words, until his adjusted age was 18 month).

I contacted EI in August when he was 20 months. He was evaluated at 21 months

and qualified due to the delay in his expressive language (his receptive

language skills are great). He started with one hour of therapy a week at 22

months (Oct). I should add that in the state of NJ, children with

speech/language delays at that age start with developmental intervention therapy

rather than speech therapy. I also believe much of the therapy is ABA. We got

lucky and have a wonderful DI therapist out of Children's Specialized Hospital

who knows the system and is willing to push it. After 3 weeks she indicated to

us she thought he had mild apraxia. After 4 weeks (mid Nov), she recommended we

get a professional evaluation and gave us three suggestions/referrals:

1) Pediatric neurologist Lara Morse, out of St. Barnabas

2) Pediatric neurologist Trevor DeSouza

3) Developmental screening clinic at Children's Specialized Hospital

(Mountainside facility)

I made appointments for all three, just in case, though the appointments ranged

from 6 weeks away (late Dec) to 2 ½ months away (late Feb).

She also pushed to have a second IFSP in early December, and we were able to get

him increased to 5 hours of DI therapy a week.

Lastly, our DI therapist suggested we get a physical therapy evaluation because

has a tendency to drag his right foot in front of his left, thus

tripping him up. He is also clumsy, doesn't yet jump and still mostly climbs up

stairs. We have a physical therapy evaluation at Children's on Thursday. I

should also mention previously received physical therapy for torticollis

from 5 to 11 months of age.

We saw Dr. DeSouza just prior to Christmas, and he confirmed the apraxia

diagnosis. I'm waiting to get a copy of the evaluation report. He was

surprised to hear we were getting 5 hours of therapy a week, but while I

indicated in the patient history that it was DI and not directly speech therapy,

I'm not sure if I made that clear at the appointment. He also mentioned some

low tone when he was looking at his hands and lower arms – I'm sorry now that I

didn't ask some questions about this to really understand what he meant.

really hasn't had any feeding issues – except when I was trying to nurse

him, but I that's another story as I got so much conflicting advice from

lactation consultants. Dr DeSouza also recommended The Late Talker book, which

I have read and my husband is now reading, as well as mentioned Dr.Agin's and

's last names, which is ultimately how I found this group. We have a

follow-up appointment in mid March.

We also started Nordic Naturals after discussing them with Dr. DeSouza - 1

capsule of ProEFA started 12 days ago. I do believe he is making more sounds,

and his therapist made a special point to call me on Thursday to tell me he had

his best session yet, and was really trying to make the sounds, particularly

animal sounds, and attempting to say words.

I know we'll have another IFSP meeting in March, and I'm trying to determine our

next steps to make sure we get what needs.

1) We have an appointment with the Children's Specialized Hospital developmental

screening clinic on Feb 4th. Is it still worthwhile to attend this? Does

anyone have any experience with this? My other concern is the prescription for

this – our pediatrician gave us a diagnosis code of 315.39. I understand this

is a bad code to use with insurance companies. Should I be concerned about this

and follow-up and have her provide us with a different diagnosis code, and if

yes, suggestions for which one (it gets complicated, because our preferred

pediatrician is now out on maternity leave, but…)?

2) We have an appointment with Dr. Morse on Feb 25th. I would still like to

make this appointment not so much to get a second opinion as to his diagnosis,

but to get a bunch of questions answered and discuss various treatment options.

I also understand our head pediatrician, who is also a developmental

pediatrician ( Shaw), recommends people to her. Does this make sense?

Or should I seek out yet a different specialist?

3) Should we also seek out an evaluation from an SLP in the near future? Our DI

therapist said she would also recommend Speech therapy for him at our March

IFSP, but should I come prepared with an evaluation and recommendation for

treatment? To follow-up on that, does anyone have a recommendation for an SLP

in NJ (specifically Union or Essex counties)? We did have a speech therapist

participate in his EI evaluation, and as time goes on, I'm less and less

impressed with her.

4) Even though he passed the ABR, should we look to get another evaluation or

hearing test from an audiologist?

5) Is there anyone else we should see for an evaluation? doesn't appear

to have any sensory issues. What else should we be concerned about?

6) At his age, what treatment or therapies should we expect or request as being

appropriate?

7) Lastly, when do you increase the ProEFA dosage or add the ProEPA?

I also just want to thank you all so very much in advance for your advice,

feedback and suggestions. Apologies too for having so many questions at one

time!