new parent looking for advice

[admin]

Hello, I have a 5 week old son diagnosed with Erb's palsy. He has already regained some tricep function and was born with hand and wrist function. We have meet with a BPI specialist at the Mayo Clinic today. Has anyone gone through the Mayo Clinic for this type of injury. They told us that in 5 to 6 weeks they would further asses his progress and concider surgery at 4 months. We are yet to get a straight answer on prognosis and any statistics on recovery. I know that every case is different and most of the cases mentioned here seem more severe than ours since Hand funciton has always been present for my son. Any advice or guidance would be greatly appreciated. Also, where would you recommend a second opinion from.

[admin]

Nancy:

Sorry to hear about your sons injury. You are doing all the right things for him at this time. Is he in therapy at this time? If not, you should get him into a therapy program asap.
As far as a second opinion is concerned, there are several different facilities that you can look into. I am sure you will get some great posts here to help you on that. I recommend DR Waters in Boston b/c he is our specialist for my daughter Mariella and we think he is wonderful. We have been seeing him since Ella was 2 months old. Many people here on this board love TCH (Texas Children's Hospital) and they can give you more info about that. Check out the medical resource directory on here.
http://ubpn.org/medicalresources/us-bpi.html
This can give you another idea on different doctors in different states.
Also, I know Boston and Texas will do evaluations by video if travel is too far.
If you want more info on Dr Water's feel free to email me.
Here is a little info on Ella:
She has Erb's Palsy in her left arm. At birth she had wrist and hand/finger function. She has been in therpay (PT & OT) since she was approx 1 month old. She has had a remarkable recovery so far with no surgeries. Her first surgery will be secondary surgery in Boston at the end of this month. She turned 2 this past September.
Email me with questions or if you need to talk. Take care for now!
Ldybug4134@aol.com
~Krista~

[Francine_Litz]

Hi Nancy and welcome!

From the home page - click on the link for INFORMATION FOR NEW PARENTS

Then - also from the home page - click on anything labeled Awareness and from there click on Resources

there you will find a myriad of information that will be helpful.

TCH has two sites to look at - the hospital site is http://www.texaschildrenshospital.org - go to Patient Care - then brachial plexus
then Dr. Nath has his own site: http://www.brachialplexusinjury.net

My daughter Maia is 5 1/2 and has a Left OBPI. She had partial ruptures and has had four surgeries to date. She's a great kid - and loves to have fun!
YOu can read more about her and our journey on our site
http://www.injurednewborn.com/maia/homepage.html

I wish you the best and hope that your little one continues with his wonderful recovery and that you get turned away at 4 months for surgery!

God bless your son,
francine

[Francine_Litz]

Nancy - one more thing...check this out!
http://www.injurednewborn.com/bpi.html

[admin]

Are you from Minnesota? We go to Gillette Childrens in St. Paul MN and we are very pleased with them. I hope you can check them out if you are from Minnesota. We have a dinner party on the 27th to meet other parents whose children have this injury. My son is 11 months old nearly and goes there, good luck.

[admin]

Yes we are from Rochester Minnesota. How did you decide on Gillette? I know you are from the Twin cities area. Did you look into other places too? Have you heard anything about Mayo? We had an appointment yesterday, they have an actual brachial plexus clinic, but I know they do not specialize in pediatrics so I don't know how many babies these docs have worked on. How are things going for you? Has your 11 month had any surgeries? Can you attend the Gillette gathering if you are not a patient of theirs? Good to make a contact with another Minnesotan. Good luck with everything.

[admin]

Dear Nancy,
Gillette only deals with children. THe brachial plexus team is made up of 3 specialist they are: Dr. Ann Van Heest(lead doctor) Dr. Partington(neuro surgeon) and Dr. TAnaguchi he deals with muscle function and has done EMG's on our son. He had surgery in Oct. it went very well. They gave us a pager so they could call us every 1/2 hour or so to keep us updated. His scars I thought would be bad have healed nicely and are now smoothe. The nurses there are very kind and anything you need they will get. I actually stayed in the same wing my mother was a nurses aid at. Her friends took care of Zak. If you would like to attend you can see by callingSara Tambor at Gillette #651-312-3172 or 800-719-4040 ext. 3172. Explain to them the situation and tell her you'd like to meet other parent and children and share stories. They will also be giving us info and we can ask questions to the attending Brachial PLexus team and nurses. Tell Sara that I thought you should go, I do not see why not. CAll her by the 21st. If you would like any info to make an appointment I can give you that too. Ann/Zak's mom 101/2 months.

[tgiesler]

Nancy,
Congrats on the birth of your little boy! I am from the La Crosse, WI area. Our orthopedist referred us to Mayo a couple of months ago and we still have not heard anything from them. I have persued a couple different avenues because of this. I also know someone whose daughter had surgery there and it did not go well with Dr. Bishop. This was 6 years ago though. I encourage you to touch base with Texas. They have been very helpful. The person there you will talk to is Lisa Davis. She truely is wonderful. You can also send a video tape and have them evaluate it. I have heard nothing but positive things about TCH. We also have pursued the avenue of Shrines hospital in St. Paul. Dr. Ann Van Heest is one of the Docs there and I have heard wonderful things about her as well. That is where we will be taking our son Robert. We just got approved today! One thing that you might want to look into is the Birth to Three program if they have it in Minn. They can come into your home and do therapy once a week. You can contact you local health department to find out more info, or contact me and I can try to help you. Therapy is SO important, and the earlier the better. Good Luck to you. Hope to here more from you.

[m&mmom]

We recently made the switch to Shriner's in Phila, PA. They're an excellent facility with above average care.

Cindy