I just found you guys!

[Mom2Ethan]

I must start by saying what a RELIEF it is to have found this website. My name is Janna and I have a 4 month old son, Ethan, who was diagnosed with Erb's Palsy in his right arm. We have been to SEVERAL doctors, physical therapist, neurologist, surgeons....the list goes on. We were told from the beginning that it was a very mild case and he would recover on his own by 4 months (i now know that is what they pretty much tell everyone)

Ethan has been doing physical therapy 2x week with a Therapist plus my husband and I do Range of Motion exercises with him at least 3x day. He has made drastic improvements since month 2. He reaches for toys, pulls it to his mouth, stretches above his head, BUT, we can still see the delay.

Last week, however, we visited with Dr. Nath at his clinic here in Houston. He walked in, looked at Ethan (didnt touch him or review his physical therapy reports) and just started right into "He needs 2 surgeries, 1 in the next 2 months" We were stunned, definitely not what we expected to hear. (REMEMBER, we have been told this entire time that his progress with PT was great!) And quite frankly, very taken back .... We have an apt tomorrow for a 2nd option with another very respected doctor here in Houston.

So my question begins here.....I would like some feedback on anyone who's child was diagnosed with BPI, went thru Physical Therapy from an early age, and their outcome today. What is fully recovered to a child who didnt go thru surgery? Is it possible for Ethan to fully recover, to have full function of his arm?

Again, i am so glad to have found you guys......I would truly appreciate any feedback. My husband and I feel like we have been running circles with those who want to tell us everything will be alright....not those who want to hold our hand and tell us the truth.

Thanks again!

[nkjacoby]

It's nice to meet you. My son is seven years old now and I can remember like it was yesterday when we began our journey. My advice is to always get a second opinion. If you have questions about what one doctor is suggesting then I would talk to another specialist. It always helps to get the opinions from two physicians and then make your choice. There are many great physicians that you can see. I wouldn't mind at all to share any experiences with specialist's that my son has seen. You are welcome to email me with any questions that you may have about my experiences with different specialist's. I hope this advice helps you. Have a nice day!!! :0)

[Mom2Ethan]

Thank you so much for your response..its nice to hear from someone who has gone thru the experience.

We see another specialist today so i will keep you updated. I appreciate your offer to share your experiences, if you dont mind, i might shoot you an email tonight once we visit with the dr.

After reading some of the post, it amazes me at how doctors present this as being so "common", yet parents battle to find the right answers, the right specialist, and the assurance that the decision you are making is the best for your child.

Again, i am truly so relieved to have found this site. Like most on here, i had never heard of BPI until it happended to Ethan.

Thanks again!

[Kath]

Janna
I'm happy you found this website. You will find a great deal of support and information . It's important for you as well as Ethan to have others who share the same challenges you do. It's very hard to decide what to do for our children and especially with this injury.

I am right birth injured (robpi) adult. I thought,for most of my life, I had a rare birth injury. I was shocked ten years ago when I found UBPN and all the injured children and adults.

Kath robpi/adult

[hbpsupport]

Hello mom2Eden,

I understand your concerns for your son, after seeing 2 doctors I decided to go with Dr. Nath, my daughter has been seeing him since 4 weeks and she has also been in Physical Therapy since then. She gained movement starting at 3 months and since then she has been doing ok. My hubby and I decoded to go with the Mod Quad procedure and BELIEVE me it has helped her a great deal. She was not able to lift over head (not even past 90 degree). I am very glad of the decision that we made and to have it at a young age. She has from the injury a dislocating shoulder along with the shear deformity , sfter meeting w/ Dr. Nath on Wednesday, we decided that she will definately go with the 2nd procedure which is a bone surgery. I understand how you felt when you were told right off he needs 2 surgeries, but after researching and talking with other BPI moms that have been threw this, that's when we really decided.

I knew NOTHING about this injury until my daughter was born as well and it has been a rollercoaster of mixed feelings and emotions. If you have any questions feel free to email me. I would love to talk to you, looking to start a OBPI support group here in Houston. (I'm here as well)!!!!!!!!!!


SHajwanda


Message was edited by: hbpsupport

[Tanya in NY]

Welcome to UBPN first off! It's sad to have to have you come here though because then it means your child was injured. I'm sorry for that.

My daughter was injured at birth as well and we were told initially that it would get better and be fine. Needless to say, that is not the case, although my daughter is doing quite well.

Seeing a doctor...you owe it to your child to get more than one opinion...multiple opionions! BPI research is changing over time. It's an ever-changing field. That makes the whole process all the more confusing and complicated for parents. If you were considering surgery for something that is ever evolving (like bpi), then getting a second opinion or more only would make sense, so I applaud you for looking for another opinion. One of the frustrating parts about bpi doctors is that they are not easily accessible to many since their specialty isn't as abundant as say a cardiologist. Many times families have to travel to see them, but traveling to see a specialist who you feel has your child's best interest at heart and is up to date on research is a must!

Finding the right fit for a doctor is difficult. Some doctors are aggressive (many surgeries, many therapies), while others are less aggressive (still do surgeries, but not so quick to suggest one, therapies used). It's a matter of finding the right fit for your child and family. I personally didn't want to subject my child to surgery very quickly. We saw many doctors and did many therapies (and still do some therapies) over many years. Eventually we found the right fit for us and have been very happy with the recommendations that he's offered our daughter and happy with the outcomes.

Anytime someone suggests a surgery, you need to research this surgery before consenting. Unfortunately, you need to learn the lingo, learn a lot about therapy, learn a lot about surgery. This isn't an option I believe but a must for your child's sake.

I have also always been wary of a doctor (bpi or not) who would say that surgery needs to be done without examinging the person and looking at their pertinent medical information. As a nurse, I would never follow-up with a doctor who didn't examine my child, family member, or self. I've walked away from doctors before that I didn't feel spent enough time reviewing the situation. Would you be okay with that if you it was a condition you knew more about? No. Examination and review of records (including notes from the therapist and pediatrician) is a must along with an in-depth conversation with about your feelings on whether you wish for an aggressive treatment plan or a less aggressive plan.

Being a parent of a child with bpi is very difficult. You'll find that these decisions are always difficult and take lots of time and energy invested in trying to make the best choice for your individual child's situation. What worked well for one child, may not for yours or may since every child's injury (and recovery or lack thereof) is so different.

Good luck.

Tanya in NY
Amber's Mom, ROBPI, almost 7 years old