Re: NJ newcomer looking for advice

[Guest guest]

It sounds like you are covering a lot of your basis. Great job at being so

on top of this at such a young age! I am sure it will make all of the

difference for you and your child. There are a lot of people on this board

from the New Jersey area so I am going to let them comments on best places to

go/drs to see etc. I think they will be able to give you some good advice.

One thing that I did want to mention because you mention your sons low tone is

to please please make sure that someone checks out the muscles in his face/oral

motor. Sometimes a child can have low tone in this area and the signs arent'

readily apparent (ie, not feeding issues, but could be simpler things affected

like not being able to put lips in correct positions for making sounds, blowing

a kiss, etc.). Even SLP's can overlook this. My son received early

intervention from age 18 mos but it wasn't until he was receiving oral motor

therapy from someone really well versed that he made great progress. My son

also walked around pointing at everything and grunting. When we began doing

the oral motor exercises at home each day and pairing this with more traditional

speech therapy methods he made the biggest gains. He went from 8 basic sounds

(no words) this past June to now pairing two words together. A person that

really knows oral motor will do a full assessment of the mouth muscles and will

be able to tell you about your sons bite, chew, tongue tip elevation etc.

Some signs you might also look for are looking at your sons profile, does he

have what appears like baby fat under his chin area? My son used to have

this and I thought it was just that, it turns out the muscles that hold the

tongue in the correct position were not strong enough. You might also try

asking him to do some basic things like blowing a cotton ball across a table to

see his lip muscles ability to blow/pucker.

Best of luck to you. Don't loose hope, I have seen many parents on this

board help their children make fantastic progress in speaking.

[Guest guest]

Hi ,

I live in Bergen County and have a 5 year old diagnosed with apraxia as a result

of a microdeletion. We had very good EI services, and were getting modified ABA,

which was primarily language based, DI, PT and OT which started at 2 hours a

week, and finished at 15 hours a week, just before he started school at age 3.

He was in an excellent preschool for apraxia, but it is in Bergen County.

We also now have an excellent speech therapist who is also in Bergen County, but

teaches at Paterson. Here is a link to her website. She might be able to

give you the name of some good therapists in Essex or Union.

www.wyckoffspeech.com

If you think it would be helpful, please feel free to email me privately and I

will be happy to give you my phone number. Sounds like you have a lot of good

people involved in your son's care.

Good Luck. Gretchen

>

[Guest guest]

hi, I could understand your concerns. My daughter is a month shy of her 9th

b-day. From the day I knew the ICD code, I went from St. Barnabas, to UMDNJ,

then to Children's of Mountainside. " St. Barnabas " was the one who discovered

the condition of my daughter, a 1:150,000 chance kind of a disease, but that was

then, afterwards, nothing much was suggested or done. UMDNJ'S Dr. Tyrone Bentley

is a very compasionate brainiac in terms of children's condition, but the

support staff seems to always up and go once we get comfortable with the plan of

treatment. Children's Hospital is a collection of services, has a lot of

exposure and experience  to all kinds of diagnoses that are challenging. They

can grow along with you, your child and the needs that arise as you go along.

They were not labelled " specialized " for nothing. They have several hospitals

you can go to through out NJ and Philadelphia. The down side is, your wait time

to get an appointment could

be as long as 8months. You can expect another wait to be evaluated for the

much needed services, before even receiving the actual service/s.. Dr. Shirley

Fisch has an extensive resume' before joining Children's, although she is based

out of Toms River now, Dr. Rose Merola is another. They hold a high if not

the highest Press Gainey Rating. 'but seeing is believing. My suggestion is to

Keep the other appointments, and get a feel for it, see who you can have the

best therapeutic relationship with and take it from there. Chances are, your

motherly instinct will tell you where to go, but the insurance guys will

ultimately decide. I hope and pray that everything goes well...

 

________________________________

From: <maryfmchugh@...>

Sent: Mon, January 18, 2010 10:24:30 PM

Subject: [ ] NJ newcomer looking for advice

 

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!