now I am really confused.....

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
admin
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Joined: Mon Nov 16, 2009 9:59 pm

Re: now I am really confused.....

Post by admin »

Excellent news!!
admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

Re: now I am really confused.....

Post by admin »

How exciting, Which doctor did you see?
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brandonsmom
Posts: 1401
Joined: Mon Nov 22, 2004 4:43 pm

Re: now I am really confused.....

Post by brandonsmom »

That is so exciting. I agree with your third opinion option but also, think that Dr. Nath is a great Dr. Who wouldn't do anything to harm our children
Salina
Posts: 80
Joined: Wed Nov 17, 2004 5:05 pm

Re: now I am really confused.....

Post by Salina »

Hey,
My name is Salina and this recently happen to us also.
My DD is 5 1/2 months we normally go to DR.Hentz.
We were refered to him by Nath.
Hentz said are DD needed primary.
But Nath said no she needs botox.
I to am very comfused now.
She is scheduled for Dec 10 for primary but now we are not sure.
Dr.Hentz told us.
That they use key musles to show if they need surgery or not.
As if the biceps flik or not.

And also the wrist staying down not being able to pull the wrist back to nurtal than it is a severe injury.
I would like to know more please email me.
Salina
katep
Posts: 1240
Joined: Mon Mar 29, 2004 3:20 pm

Re: now I am really confused.....

Post by katep »

The indications for whether or not a child will benefit from primary (nerve grafting) surgery are based on the expected recovery without surgery and also on the expected results with surgery. The goal of every surgeon is to select those patients for surgery who can be expected to have a better long-term recovery with surgery, and to perform surgery as soon as possible (for best results). There is disagreement among the doctors as to how to weigh the available evidence, their confidence in the improvements that can be expected with nerve surgery, and the relative risks involved with waiting longer for natural recovery.

Basically, they are all playing a "guessing game" in trying to figure out if surgery *now* will provide results *much* later. The hard part is, you cannot wait for the actual recovery to occur or not before making the primary decision, because there is a "window of opportunity" for performing nerve reconstruction. If you wait too long for natural recovery, and it doesn't come in, you can't just go ahead and do the primary as if the intervening months didn't happen. The doctor must make an informed guess as to what the natural recovery of your child will look like in the future and weigh that against what they expect your child to regain with primary surgery.

One of the most common indicators for choosing primary surgery is the ability to flex the arm against gravity within a certain length of time; most doctors will give the child somewhere between 3 and 6 months to recover "hand-to-mouth" biceps against gravity before recommending primary surgery, depending on the doctor. Some will wait longer, and some don't "believe in" primary surgery at all. Some will factor in the recovery of other muscles as well when trying to decide.

The use of botox for young children facing the primary surgery decision is VERY new. There are no "natural history" results for these children that have been published; the non-surgical recovery of patients treated with botox has not been established. It is not at all clear that if biceps recovery is obtained by 6 months of age during the use of botox, say, that this means the same that if hand-to-mouth was recovered by 6 months without botox.

As an unabashedly conservative mother who is comfortable only with the most supported, evidence-based treatments for my child, this is my opinion: because of this lack of evidence on natural recovery augmented with botox, it is not suitably clear at this point how the use of botox should affect the primary surgery decision. If it were me, I would stick with the bulk of the established evidence that suggests that the longest you should wait for biceps recovery against gravity ("hand-to-mouth") should be six months of age in upper trunk injuries (the classic "erb's palsy" that leaves the hand and wrist fairly normal) or three months for total plexus palsy (where the entire arm is affected) WITHOUT the use of botox to confuse the decision.

Kate
claudia
Posts: 1241
Joined: Tue Nov 06, 2001 12:21 pm

Re: now I am really confused.....

Post by claudia »

Dear Kate:
As you know, I am much more aggressive in my treatment of my child than you are with yours. I have also used botox on Juliana twice, with excellent results. However, I have to thoroughly agree with you that the use of botox on infants is SO INCREDIBLY NEW that I would not use it if my baby were being considered for primary.
I can see how botox helped Juliana as a preschooler, but I really can't see how it would help an infant. We were able to do ask Juliana to perform functional tasks, post-botox; and you can't do that with an infant.
As frightening as primary was to go thru, I would do it again in a heart beat. We were "lucky" that Juliana's injury was so clear. She was not on the fence in terms of function--she had none.
These are tough decisions, but in this case I would go with the standards: hand to mouth against gravity by six months; hand function by 4 months.
I wish the doctors would (could) agree on some standards and get them out there, but so far, this hasn't happened.

good luck,
claudia
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