Carts, Horses, and (Probably) CP

typeset

So the baby was noted to have "really good tone" at his first checkup out of the hospital. We thought that was a good thing; his brother has hypotonia. Fast forward a few months and this kid is rigid. I've posted about that here before. I mentioned my concerns about hypertonia and a lack of babbling to the pediatrician at his six-month appointment. At the same visit we discovered the baby had dropped over half a pound since his four-month visit, taking him from the 25th percentile to the 3rd. The pediatrician quietly confirmed the hypertonia and stated that the next month of development would be "critical." 

I called and booked an appointment with the CP clinic at our local Children's hospital, not based on anything the doc had said but based on good ol' Google. I also triggered an eval with EI knowing that it would be a few weeks before they'd see him. I let the pediatrician know. He was surprised I called EI, but fine with the CP clinic.

EI was out yesterday. He failed communication, receptive and expressive both showing weaknesses, and qualifies for a year of services. Based on the receptive piece, I've booked an audiology consult a month from now. He passed his birth hearing screen, hasn't had any ear infections, and hearing wasn't on my radar aside from him not consistently responding to his name. Yesterday he failed to bat an eye when a loud bell was rung behind him twice. He responds to voices. He only imitates tongue clicking and limits his vocalizations to ahh. Having now looked up CP and hearing loss, I'm calling back tomorrow to see if there's anything sooner. I think he hears, but I'm concerned about the quality of what he's hearing. 

There are no concerns about ASD at this time. He's got joint attention, seeks us out, makes eye contact and smiles to continue games, etc. It's been really wild to watch after seeing the kid's first few years. He's just very, very quiet.

He did not fail the motor portion of the Battelle. He rolls both ways, sits for a spell before arching backwards, and bunny hops on his knees. It's the quality of the movements that's in question. The OT noted increased tone and extensor patterns and a discrepancy between his upper body and lower body strength. She also agreed with him going to the CP clinic. I know goals drive services, but I think it's going to be very hard to get a gross motor goal ahead of a Dx, if any. I subsequently called the pediatrician who stated he needs to be in PT and put in the orders for private therapy. We'll know more about EI services in a few weeks when we write the IFSP.

Thoughts? Am I'm going overboard? Missing something? I'm used to EI, but this is a completely different bundle of issues than we've ever dealt with. These kids are polar opposites ... and trying to drive me to drink. 

JoJoGee

I'm surprised your pediatrician was okay with you making an appointment with the CP clinic.  When we began to suspect CP everyone in the medical field told us we had to wait until L was 2 years old to get diagnosed (she was 1 at the time).  I knew she had CP thanks to all the research I had already done, so I didn't wait.  I pushed for an MRI and that, accompanied by a clinical evaluation, clenched the CP diagnosis (she was 1.5 at the time of diagnosis).

typeset

JoJoGee said:

When we began to suspect CP everyone in the medical field told us we had to wait until L was 2 years old to get diagnosed (she was 1 at the time).  

I'd read that, but Children's says most are Dx'd between 6 and 12 months. 

bumpuser511563

Wow I am glad you pushed for all of those evaluations and services for your DS! You sounded very busy.

I don't think it is overboard at all. You are a pro-active mama!

Junebug060609

If he qualified for EI then you aren't going overboard...in fact you're pretty awesome for being on top of this so early on.