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early intervention

meggs2003
0 Recommendations

Hey everyone!
Well my little monkey is just about 5 weeks old. He had his shunt surgery on 7/1. He did NOT want to wake up at all, he was on the vent all day wednesday( his surgery was at 8am) and most of the day thursday. They gave him a shot of caffine, and extibhated him at 3pm on Thursday. He is now on the vapotherm at 7liters at 21% oxygen. He is doing very well and they said he is finally waking up!
Anyway, I was wondering what the "requirements" are to have EI, and just some general info on it. No one in our NICU has talked to us about it yet, and I was just wondering if he qualifies. He was born at 30 weeks 4 days, he had RDS, and is now classified as BPD, he had IVH and had the shunt.

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Surgery Torticollis

9 replies

mygirlsmom

I would guess that he qualifies, as most kids do. Your social worker should be able to fill you in on the details, I would take some time out and just sit down with them. We never did that, and I regret that. We also never knew about E.I. and no one ever contacted us - I just found out about it on this website! I was pretty clueless about everything!

Many hospitals have NICU follow-up clinics, which is totally separate of E.I (which is state-run). It's the hospital's way checking on your child and making sure he has major screenings, etc. Also ask your social worker if you have this service. For us, we have NICU follow-up clinics every 3-6 months, until they are 3. We have OT, PT, and ST at each clinic.

meggs2003

yeah i actually work in the clinic that has the NICU f/u. I know they like to do those 3 months for the 1st year... and then whatever the docs think thereafter.

MaryBeth

My dd qualified automatically because of the hydro and shunt. In some states she would have qualified automatically because of birth weight but not mine. I would say without a doubt call now to get an appointment for evaluation. I called when dd was in the NICU and we were evaluated very soon after she came home. A lot of EI programs have long waiting lists (some 3 months) Do not delay! Also, once he is well enough to go in public you may consider private therapy along with EI or in replacement of it. Sometimes EI therapy is just not enough.

Also, look into some financial assistance programs in your state or medicaid waiver programs to help cover medical costs.

Good luck and glad the surgery went well.

IansMommy

Yes he should qualify. Or NICU never referred us to an ECI but when we went to the Children's Hospital they did. It's basically free in Texas, based on income. If you make over 6 figures you'll probably have to pay.....

The best thing to do is get on the phone and start dialing. I'm sure someone can start you in the right direction.

Here's what I found for your area, nothing was in your town. Remember I'm in Texas so I know nothing about this region.
Lancaster County Offices: Early Intervention
150 N Queen St, Lancaster - (717) 399-7323

Early Intervention Services
3700 Vartan Way, Harrisburg - (717) 541-9620

IansMommy

The fact that he has a shunt may even qualify him for Social Security Income.
Social Security Administration
(717) 291-2168

Doesn't hurt to try. Worst they can do is say no.

EI set us up with a speech therapist for eating issues and an OT for toricollis. It's also good to have the connection already made if an issue comes up.

meggs2003

IansMommy-
Thanks so much! I tried to call the NICU social worker last week, but they were off due to the holiday, and was unable to leave a message( not sure why but the answering machine said do not leave a message at this time). So i was going to call again today, although i guess its just easier sometimes to do things on your own! I will give the EI office a call, im in Lancaster County so I guess thats where he would be based.

quadmomma

Hey you just described one of my sons to the T! Mine were born at 28weeks and yes your should definately quaify. I woul dcall NOW to schedule therapists. Can I ask what level (s) was his IVH?

beckhamsmom

Also, you could request OT, PT while he is still hospitalized. We had an OT come to his bedside 2x per week while he was still in the NICU. They showed us different ways to hold him, rock him, etc to mimic the movements / sensations (up down, sideways, back and forth etc) that he/she would have felt in utero.

katek

Usually, there is a NICU staff member who talks about early intervention when baby is being discharged from the hospital. If the discharge nurse doesn't bring it up at that time, then be sure to ask about it.

In some states, the programs have limits on the number of times that a baby can receive an evaluation to be entered into the program. I would contact the EIP (early intervention program) as soon as baby leaves the hospital, but you may want to wait on scheduling an evaluation for a time when baby is expected to have some skills and can then be described as delayed or not.

A couple months ago, someone said that they had received an evaluation but the EIP said everything was normal so they weren't allowed another evaluation for several more months. When baby is 1 months adjusted, for example, a baby really isn't expected to do a whole lot. So you may decide to wait for a time when more skills are expected.

In our son's case, we called right away b/c he was having problems with his milk consumption. It took until 2.5 months for the EIP to schedule an evaluation with an OT. The OT determined that he was indeed using a "non-nutritive" suck pattern, which is why it was taking so long for him to drink a bottle. She also diagnosed him with torticollis. Consequently, although he was 2.5 months adjusted, his motor skills looked more like a 1 month old.

If you feel like your child is delayed on skills (based on adjusted age), then call your child's pediatrician right away and perhaps the EIP. That's when it is a good time to get an assessment.

I agree with beckhamsmom about requesting OT and PT services while he is still in the hospital. Those will be covered under your insurance. Given that baby is in the NICU, that is usually covered under emergency services so there should be any extra co-pays. And that won't count against any EIP limitations if your state has them.

In our state, the insurance won't cover therapies unless the EIP states that they can't find a therapist for the child if services are needed b/c the state covers OT, PT, ST for children under 3. So when my son needed a PT, we had to wait a couple months so that the EIP could "prove" that they couldn't find an available therapist in our area. Then, the insurance paid for 14 sessions with a PT...at which point the EIP had finally found one on their list who was able to accept Henry onto their case load.

If your hospital offers infant massage classes, I highly recommend looking into them. Infant massage has been shown to stimulate appetite, promote better sleep, and teach baby the boundaries of his/her body. It isn't used on those at a very young gestational age (who shouldn't be given the stimulation), but as baby moves toward due date (when stimulation is expected), positive touch from a parent can have positive results on baby's health.

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