Impossible Decision

[Guest guest]

Larry - I, and probably many other parents in this group, totally understand what you are going through.All I can tell you, from my own experience, that banding is easy. We banded our daughter when she was 10 months old, and she wore her DOC Band for 10 weeks. She never missed a beat. It did not bother her (and in fact, when it was off, she was always looking for it to put it back on!). She started walking while wearing it. It never bothered her. The 10 weeks went fast. She was low on the severity scale, but we noticed the assemtry, lumps and bumps, as well as facial assemtry, and decided - **against our pediatrician's advice** - to band.Every child responds differently, but our baby's facial assemtry improved greatly - even though we banded "late" so to speak. Her head

rounded out and no longer has that flat/smashed look on one side. It totally worked.Probably the hardest thing to handle is how other people treat a banded baby. Most people are nice, some are ignorant, and some can be mean. Fortunately, none of this will affect your child - only you and your wife. So if you guys are strong enough to navigate a few weeks of stares and questions, I guarantee that your child can handle it too.You have a very short window to fix this. I can't tell you what's right for your family and your child, but I can tell you that overall, the whole banding process is a breeze. Sometimes we forget it ever happened, it went so quickly and was so simple.Just by writing to this group, I have a hunch that you have that nagging feeling that you should be doing it. If that is the way you are leaning, you have a marvellous group here who can tell you all the tricks for handling the short weeks of the banding

process. Good luck to you and your family!bestali in NJ

[Guest guest]

I know it is a very hard decision, we started the process at 4 mo and didnt get my sons band until 9 mo b/c we were going through that. The neurosurgeon also told us he did not need a band and would outgrow it. Hanger measured him at normal even. But I could look at his head and know it was nowhere near normal. The neurosurgeon didnt even take measurements for my son. Cranial Technologies though took a lot of measurements so it took into account his skull base which is where my son had the most problems which caused facial and ear assymetry. That is why his hanger measurement was normal b/c they only measured the one measurement near the top of his head, they werent thorough like CT. Is that the only measurement the NS did? What were his CT measurements? If his worst assymetry according to both was 7 mm I think you are in a hard place as most insurances, doctors and banding places use 8-10 as the cutoff to recommend treatment. My sons worst measurement was 17 with 2 others being 15 so we wer ein the moderate to severe range according to CT so if we decided to believe those measurements we had a much easier decision to make. Whereas he graduated near where your son is, with his worst finishing measurements being 4, 5 and 6 mm and a 2nd band was not recommended. I know it is hard though b/c even at 6 I can see it noticably on my son still (despite incredible improvement) so I can imagine what you see at 7. I am sure had we gone with a 2nd band with CT we would have seen more improvement so I am sure you will see improvement if you do a band. I do not see why you wouldnt see facial improvement even. I asked CT up front what they felt the results could be and they told me that with my sons age and severity they would estimate he would need only 1 band and where it for about 3 months and would be able to get down to about an 8 mm assymetry. They ended up getting him even better improvement than that. Will they not give you an estimate or idea of what you coudl get?

On Sun, Jul 27, 2008 at 12:43 PM, lsilverman78 <larrysilverman@...> wrote:

Okay... this is going to ramble on... please bear with me...My wife and I have been endlessly debating treating our son'splagiocephaly for several months now. He is currently 9.5 months old.Our pediatrician, and two neurosurgeons have now told us that

treatment is unnecessary, and that the flatness is not noticeable fromthe front. The measurement taken by the neurosurgeon showed a 7mmdifference from one side to the other, which apparently is consideredmild. However, when I look at his head from the top or the back, or

certain other angles, it is very obvious. It seems most obvious to meat the base of his skull, where one side is very rounded, and theother is flat. The measurements that were taken by the neurosurgeonwere done much higher up, and do not seem to take this into account.

The neurosurgeon did offer to write us a prescription for a band, butstrongly tried to talk us out of it... to the point where we ended upleaving his office without it. He also said that we were unlikely tosee a huge benefit from the band, and also that it would not help

facial asymmetry (one cheek is more prominent than the other, and oneear is set more forward than the other). Is a child of his age withhis relatively low differential likely to see a benefit fromtreatment? I should mention that a few weeks ago, we did go to CT for

an evaluation, and they said that he was definitely within the rangethat they treat (although they could not guarantee any affect on thefacial asymmetry either). But... despite all of the great things Ihave read about CT, they are a company selling a product, and they are

not doctors, whereas two neurosurgeons have said not to bother. I apologize for the long, rambling message, but this has been kickingaround in my brain for weeks now. Does anyone have any experience oradvice that might help us make this decision?

Thanks,Larry -- SC SAHM to , , , , and what should we name our baby girl?

http://www.babynames.com/namelist/9614412

[Guest guest]

Hi Larry,

I totally understand how you are feeling. My husband and I were torn

over our decision to band because our pediatrician and PT did not

feel the band was necessary for our 9 month old (8 mm); they both

said her head would round out and her hair would cover any assymetry

of her ears.

Fortunately, in the end our PT said that if it bothered us enough she

would recommend the helmet, as there is no way to fix the shape of

the head and the assymetry once our daughter gets older. But even

with this recommendation we were still a bit discouraged because we

too felt that if the medical professionals were saying it was not

necessary, that meant we were leaving the decision in the hands of

the helmet manufacturer -- and why the heck would they ever turn

money away? (We used Hanger, not CT.) However, after more research

and a visit with the ortho, we felt more comfortable banding. For us

the ear assymetry was the biggest issue; the helmet is supposed to

reshape the head and consequently improve the ear misalignment. It's

been 3 weeks so far and she goes in for her first measurement

tomorrow. To the naked eye, we have already seen an improvement in

the alignment of her ears.

My other concern with not banding was that I have read jaw and/or

vision problems could develop if uncorrected assymetry exists (though

I think these studies are very, very preliminary at this point).

If you are still on the fence, perhaps you could go see another ortho?

Good luck to you!

e (

(mom to Ava; 9 mos old; 3 weeks in Hanger helmet)