Mayo or Dr. Nathe

[Stephen's mom]

Andy S.,
It is November now, you may or may not have had your appt. My recommendation, make sure they do an EMG (electromyelogram/nerve tes). I have just joined this group, dealing with BPI for 12 years. Believe it or not, I went to a BP clinic when he was a few months old and they made the assessment by observation that the nerves were stretched but intact. We found out at age 11 the scapula nerve was dead.

Hope it all goes well and I am glad you have this group as you start this journey. I say get educated and only go to professionals (this includes PT/OT) that have treated BP kids before. We did not know any better:o(

Stephen's mom

[Andy S]

Tomorrow is the big day, we are heading there this afternoon. Earlier I posted that she had good bicep movement, actually it is her tricep thats working well. I have not seen any new movement in the last two weeks, I try not to get to discouraged, but during week 3-4 she really progressed. Week 5-6 has not been as eventfull.

Thank you for the heads up on the EMG testing. We will definately ask the Doctors.

[Stephen's mom]

From what I have learned, if there is a snapped nerve, "they" can do a nerve graft. I do not know at what age this is. Dr. Nath is definitely the expert in all of this. There is also splinting that can be done. The bones and muscles grow, but the nerves are not working properly to move the arm in sinc with their growth, that is where elbow contractures start and turning in of the shoulder. If the nerves are just stretched but not snapped, she will begin to use her shoulder to cause arm movement. Compensation begins very early and with compensation, muscle imbalances develop. I might not be saying this all correctly, I just want to give you some knowledge to talk with the docs. I think I have said I knew nothing and with the laid back attitude of the health care professionals around me, I thought this was not such a big deal. Yes, compared to cancer, it is not so bad, but it is far more complex then I realized. I hope it goes well, and if you are able, don't be afraid of second opinions. My son also has a childhood hip disease and we have had 5 opinions on that:O)

[lawrey]

Good Luck at your appointment at Mayo!! I hope they're able to answer all of your questions! And don't be discouraged by the lack of new movement ... it seems like they go through spurts where they get new movement, then nothing and then all of sudden new movement again. Let us know how everything goes!!!!

[AlannahD]

There is a group of us here in Kansas City, also. We have Children's Mercy Hospital in KC that has a brachial plexus clinic! C. Bearly

[Andy S]

Lilys first visit went well, the Mayo team is great. We are going back in January. Then they will perform an EMG,CT and Mylogram test. This is all dependent on how well she improves in the next two months. If she does not improve, they will perform the EMG. If the EMG indicates avulsion, they will perform nerve graft surgery four days after the tests. Lily will be four months old at this time. We are very happy with how the Mayo team is handling this.

[Stephens mom]

Sounds great!! I am very happy for you that you are in a place where they know what they are doing. There are great medical advances for this condition!!

[mom2peyton]

Hope all went well with your appointment. My daughter is 9 1/2 now and up until now has had her surgeries done in Texas. She recently was referred to Mayo Clinic by Dr. Nath for a minor procedure she needs to have done. I can say I was very impressed with her consultation visit at Mayo and am looking forward to seeing how things go for her surgery next week. I agree that if you have any concerns that more than 1 opinion is helpful. It is great to see how many more options there are now then even when Peyton was a baby.

[lawrey]

Hi Andy (and Family)

I'm so happy to hear that your first appointment at Mayo went well and that you feel comfortable with the doctors there!!! We'll be there in January for Aubree's 6 month check up. When exactly will you be there?? I believe our appointment is the 27th or so. Anyways, just wanted to say Hi and glad the hear that things went well for you!!!

[Andy S]

Dawn, The first appt is Jan 21st, but depending if she has surgery we will be there Jan 26th and possibly that whole week. We may see you there!