Re: New to Group - Son Just Diagnosed

[Guest guest]

Hi Laurie,

This is probably going to be one of the 1st hardest decisions for little Max you'll have to make! I know, this was the hardest part for us, deciding whether to band or not- and as time is of the essence, you really feel under the gun for that window of opportunity. What helped us decide (or me, my husband was ok with whatever I thought- which made it harder because then it was MY decision!) was a couple of factors:

1) has tort and it was a constant battle to keep him off the flat spot- and was in daycare- somewhere I couldn't honestly say I had total control of what was happening all day.

2) The facial asymmetry was very apparent. His ears were very misaligned and his cheek was more forward and eye smaller.

3) The insurance paid 100%.

4) There was no guarantee that it would round out on its own. A friend has a child 9 months older with severe brachy, and decided he did not need a helmet. Now at almost 2 years old, his head is very high and broad and I think they regret not doing anything. They are currently seeking a speech specialist (don't know if its related, although some say delays can be a factor- not sure this is true).

You will have to weigh the pros and cons as parents for Max, since you know first hand if you have seen progress and if its enough to satisfy the reasons that you would even consider a band. For us, we have no regrets. All the issues I described are now resolved, including the facial asymmetry. At 8 months, Max would still be at a very good age for correction with a helmet or band. Other parents have also had great success with repositioning, although I think for the majority this was started very early on. Repositioning did not work for us because of the tort and him "springing" back to the same position. I was sad at first to think I had to get him a band, but looking back, it was a piece of cake and so worth it.

Good luck to you all in your decision making! I know how hard this process is, probably harder than the casting itself- that was only 10 minutes and I spent hours of anguish just trying to decide!! did not enjoy the casting, but seriously, it was over in 10 minutes- no exaggeration (at least for DOC band)- and he was all smiles when we washed him up and gave him hugs and kisses! If anything, don't even let the casting process sway you one way or the other, its only a fraction of what its all about. Please keep us updated, we are a support group here to support you either way, band or not.

' Mom

[Guest guest]

Hi Laurie,

Sounds like you have received a lot of information in a short amount of time!

I can imagine that it must be very hard to take it all in. You will get all

sorts of opinions and advice from this group and you will have to take all

the info you've been given by the experts plus all the real world advice and

opinions you get from us and make the best decision for you baby! My daughter

started helmet therapy at 9 months. We noticed it at 4 months and were told

it would round out on its own. Guess what - in our case it didn't - in fact -

it got worse. There was no way to reposition her - she is very physically

strong and mentally stubborn! We got the helmet and I regret to this day that

she could not have started sooner. We did not get 100%, but I'm happy with

what we did get. She looks good and we love her no matter what!

Some specialists would argue with your dr that plagio is cosmetic. My

neurosurgeon stated that plagio can cause a large range of complications

including TMJ, vision problems, speech and language delays and more. There is

definitely disagreement as to the long-term and short-term effects of plagio!

We didn't think twice about the helmet, was a moderate to severe case

and we just didn't want to risk the possibility of any complications. It was

a good decision for us. Others would say that repositioning was the best

choice for them and didn't feel the need for a helmet. We've also had some

that have used PT (mainly to resolve tort), Cranial-sacral massage and

chiropractics. It's all about what you are comfortable with. I will say that

if you decide to use the helmet then you should get started right away. The

earlier the better! Also, their is a DOCband facility in So Cal (I think - I

believe it is in Burbank). You might check out cranialtechnologies.com to see

where the nearest facility is. Then you could look at both products and see

which one you might like the best.

Good luck and I'm sure you will do exactly what is right for your baby. Let

us know what you decide to do - you will have our support no matter what your

decision is.

Marci (Mom to )

Oklahoma