new member needing reassurance

Posted April 16, 2009 · April 16, 2009

I have a DS who is currently 11 weeks old and a candidate for the DOC band

treatment. They intend to fit him and start the treatment when he is approx 3-4

mos. old.

My concerns are numerous:

1. Has anyone experienced developmental delays in their child as a result of

plagiocephaly or the DOC band treatment?

2. How do the children adapt to the band?

3. Does anyone know whether the insurance (I work for NYS and we are covered by

Aetna/US Healthcare) will cover the cost?

4. What delays are associated with torticollis? Has anyone been

informed/instructed on doing the physical therapy exercises with their child? I

have been instructed on how to do the exercises, but he fights me so hard, I'm

afraid I will hurt him.

He doesn't seem to be bothered by his torticollis or flat spot (he has

positional plagiocephaly from uterine constriction- stuck in my pelvis for 8

weeks prior to birth). He isn't really old enough to be concerned with

developmental delays, but I am still concerned. So far, he has smiled and

started cooing (well, more of a drawn out " talking " type of cooing) but he

doesn't hold his head up well and seems to have some pupil dialation lag. I

don't know if that is related to the plagiocephaly or not. The pediatrician has

discounted my concerns, so I am having him seen by another ped tomorrow.

Especially, since he has developed a small bump on the opposite side of his flat

spot (flat on back right, bump on top left) that appears red.

I know I am probably being neurotic. I just want to have all the information

possible to make informed decisions about his treatment.

Thanks for any help/support anyone can provide to this crazy mommy!

Posted April 16, 2009 · April 16, 2009

Welcome!

You are very lucky to have caught the problem early. It sounds like you are being very proactive with your child's treatment which I personally find to be very important.

I have been on this board for a long time and have never heard of a developmental delay caused by the cranial orthosis.

Also, since my son had a Hanger band and then two DOC bands, I can say that the DOC band was a much easier adjustment (Just my personal opinion since we had both types).

As for insurance, We do not have Aetna so hopefully someone else will chime in on this one.

Other than that, I think that you have come to the right place for support and I hope you keep us posted on your little one's journey.

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Posted April 16, 2009 · April 16, 2009

I can't answer all of your questions since my daughter does not have a band yet. But she does have Torticollis and she has been in therapy since birth for feeding issues and developmental delays.

She also fights the Torticollis exercises and screams hysterically, it's painful enough to watch her therapists do it - and it's even worse doing it to her myself. You can't hurt him, though.. it's just uncomfortable/painful since the muscle is tight. One that doesn't seem to bother her is to sit her on my leg (straddle) and then 'lean' her to the opposite side.. this causes her to pull her head to the affected side, strengthening the unaffected side. Does that make sense?

Mia has several delays.. she just started holding herself up on her hands on her tummy about two months ago (around 7 months) and she is 9 months now and can't sit yet, even with support. She has very weak upper body strength, and some fine motor delays also. The Torticollis has definitely affected her center of gravity and balance, which is why it worries me. Her right side is especially weak, and she leans to that side most often. She also favors her right arm/hand. If you're worried at all, I would discuss it with your pediatrician and/or get an evaluation done. It can't hurt and the sooner you start therapy (if it's needed), the better. If Mia was just starting therapy now (as is the case with a lot of babies), we would have a lot of work to do.

Kim

On Thu, Apr 16, 2009 at 12:44 PM, lfriedeborn <lfriedeborn@...> wrote:

I have a DS who is currently 11 weeks old and a candidate for the DOC band treatment. They intend to fit him and start the treatment when he is approx 3-4 mos. old. My concerns are numerous:1. Has anyone experienced developmental delays in their child as a result of plagiocephaly or the DOC band treatment?

2. How do the children adapt to the band?3. Does anyone know whether the insurance (I work for NYS and we are covered by Aetna/US Healthcare) will cover the cost?4. What delays are associated with torticollis? Has anyone been informed/instructed on doing the physical therapy exercises with their child? I have been instructed on how to do the exercises, but he fights me so hard, I'm afraid I will hurt him.

He doesn't seem to be bothered by his torticollis or flat spot (he has positional plagiocephaly from uterine constriction- stuck in my pelvis for 8 weeks prior to birth). He isn't really old enough to be concerned with developmental delays, but I am still concerned. So far, he has smiled and started cooing (well, more of a drawn out " talking " type of cooing) but he doesn't hold his head up well and seems to have some pupil dialation lag. I don't know if that is related to the plagiocephaly or not. The pediatrician has discounted my concerns, so I am having him seen by another ped tomorrow. Especially, since he has developed a small bump on the opposite side of his flat spot (flat on back right, bump on top left) that appears red.

I know I am probably being neurotic. I just want to have all the information possible to make informed decisions about his treatment. Thanks for any help/support anyone can provide to this crazy mommy!

Posted April 16, 2009 · April 16, 2009

Welcome!

Some babies have experienced some developmental delays, but not because of the

helmet or plagiocephaly itself. Torticollis MAY contribute to some delays, but

not all. I would say 95% of the time, it's just coincidence that the baby has

some delays along with plagio and/or tort. My son is in speech therapy right now

because we do believe tort contributed to some weak facial muscles that hindered

him from speaking earlier on, but other than that, he's had no other

developmental issues and is now doing great with speech.

My son adjusted very quickly to his band, and MOST babies do as well. However

there are a few that it is harder on, but even then, eventually they do adjust,

it just takes them a little longer (2-3 weeks, instead of 1, on average).

Insurance is hit or miss. I don't have your kind, and it can even vary from

state to state, so it's really hard to say. You have to just call them and ask

if they have any coverage for a cranial orthosis, it's usually under Durable

Medical Equipment coverage.

I already mentioned my son's speech delay (which was not worried about by our

ped at all, I just pursued it because I could tell that he was behind his peers,

and only our ST thinks it's related to the tort, it's never been diagnosed as

anything else by a doctor). He was in therapy for about 3 months and he didn't

like the stretches either, but it's really important to do them as often as

possible. You can't help correct the plagio (helmet or not) without correcting

the tort. Even though he screams, do them, it is just tight and uncomfortable

for him, but the more you do them, the more stretched out he will be. Have you

been to a formal PT evaluation? If not, I would suggest it. PTs can give you all

kind of suggestions for improving the tort.

Hope that helps!

Jake-2.5 (DOCBand Grad 9/08)

Jordan-5

>

> I have a DS who is currently 11 weeks old and a candidate for the DOC band

treatment. They intend to fit him and start the treatment when he is approx 3-4

mos. old.

>

> My concerns are numerous:

> 1. Has anyone experienced developmental delays in their child as a result of

plagiocephaly or the DOC band treatment?

> 2. How do the children adapt to the band?

> 3. Does anyone know whether the insurance (I work for NYS and we are covered

by Aetna/US Healthcare) will cover the cost?

> 4. What delays are associated with torticollis? Has anyone been

informed/instructed on doing the physical therapy exercises with their child? I

have been instructed on how to do the exercises, but he fights me so hard, I'm

afraid I will hurt him.

>

> He doesn't seem to be bothered by his torticollis or flat spot (he has