WHAT DO I DO GET A SECOND OPINION

[admin]

HEY EVERYONE HAILEY WENT TO SEE A NEUROLOGIST HE SAID JUST BY LOOKING AT HER ARM SHE IS NOT A SURGERY CANDIDATE. SHE DOES HAVE BICEP AND ELBOW FLEX MUSCLES BUT CAN NOT LIFT HER ARM OR HOLD HERSELF UP ON HER STOMACH. SHOULD I GO TO TCH? I DON'T KNOW WHAT TO DO. WE DO P/T EVERY WEEK AND I HAVE NOTICED IMPROVEMENT AM I JUST FREAKIN OUT? SHOULD SHE HAVE SURGERY?

[admin]

It wouldn't hurt to get a second opinion! How old is your daughter? I would send a video to TCH especially since it is free. Plus it would give you a better feeling in the end to know you got 2 opinions. I know it would me.

[Tessie258]

You can also talk to your regular ped. and tell them you want a second opinion. Get a referal to see another nuero. and send a tape to TCH then you will have 3 opinions.
I think it is only normal to "freak out" You are worried about your child. It may be that she doesn't need primary surgery but may need secondary surgery. Best of luck to you.
T.

[m&mmom]

I would get a 2nd, 3rd, 4th opinion until you feel comfortable with the surgery decision. Sometimes just a little more time is needed.
Texas will not do surgery if it's not needed. We just sent a tape in April and they recommended surgery, they saw him in Ohio and they said to push off surgery another year and try TES for a year.
Good luck.
Cindy

[mom_2x_2002]

I would get a second opionion. We are going to Shriner's Hospital in MN for our second opionion. I know I wasn't satified with the answer surgery is not an option. When everything I have read says otherwise. Good Luck

Nicki

[soulofjustice]

the dr. in my area have no clue about anything. Or the therapist at that fact. Justice's therapist didnt even know what mod quad was and when I told her she had a apt she was like what for Justice is just fine and all. Then the dr in order to get the referal for PT he denied at first till I had the cordinator call. He claimed she looked fine and had full ability well he was wrong way wrong. Go for a second opinion. I had to go all over for a referal to TCH the first time and I am sure I will have to do that again. Good luck

[mom3]

We went to 2 other doc's before finally going to TCH. The first doc said basically what yours did that my daughter would not benefit from surgery! Well we knew that was a crock. She has had surgery at tch and has much improvement. Definately get a second opinion!!

[Jallie]

I think you have gotten a lot of good advice. What I did was put together a team of Doctor's that I take our daughter too. She has her Ped., Neuro., Ortho, PM&R Doc. Therapist, and TCH. When we are facing surgery options, I take her to all of them, then take into consideration each one's opinions and recommendations. It really helps us to make the best choices for our daughter. Best of luck.

Julie Wolfgram

[francine]

Hi Karleen...

here's how to do it
http://www.injurednewborn.com/maia/video.html

if you did it you would have to make sure you had the U.S. video format

They've been doing video evals for years - they know what to look for. And what they do is if they see the need for surgery they will then talk to you about it and schedule it...usually a couple of months later...and then when you come to the hospital they will evaluate in person... many times (it's actually a high percentage) they send the kids home because sometimes in those two months of waiting the issues have resolved or they feel that the child needs more time to wait or well whatever.. hehe.

In your case because you are so far away - they can give you an idea of what they think your direction might be for Xialing...write them a letter with the video and see what they think.

I think that in your case you might want your therapist to do a full evaluation and you video it so that they get a professional viewpoint of what they are 'feeling' at the same time ??

-francine

[francine]

about 2nd opinions...just my viewpoint of course...

I think that when you get another opinion it should compare apples with apples. In other words - if you get an opinion from a top bpi specialist then get your 2nd opinion from another top bpi specialist. I would not compare an opinion of a bpi specialist with an opinion of a therapist or a neurologist.

When we were deciding on Maia's last surgery I got an opinion from an international bpi specialist and compared the thought process and the logic behind both opinions (which by the way were very different). I went with the one that made the most "logical" sense to ME.

I know this part of our journey is really hard. I wish you strength to be able to make these decisions for your child.
francine