New to Site. Seeking info for treatment of my sons BPI

[tiggerlover247]

Hello. I must start by saying how refreshing it is to have found this site! So many others (unfortunately) just like us are affected by this devistating condition.

My son Braylon is 13 months old. He suffers from BPI (klupkes palsy, erbs palsy and Horners syndrome,) all on his LEFT side. When he was first born he was rushed via ambulance to the NICU for a broken RIGHT arm and failure to breathe for 3 minutes. It was on the 3rd day there, after almost being released that a nurse noticed the BPI. (Braylons father and I had no idea, for we were scared to hold him due to his broken arm.) So we stayed in the NICU for 6 more days.

In September of 2009, Braylon had nerve transplant surgery at American Family Childrens Hospital in Madison, WI. Dr. Iskandar and Dr. Benz performed the surgery. Before the surgery his arm was pretty much flacid. He had started to lift his shoulder blade and had very slight pushing out at the forearm. Since his surgery he has gained slight wrist movement and some pulling in of the fingers.

Now this is where I am going to start needing advice. We went to meet Dr. Nath at his outreach program in Chicago yesterday. We had ALL of Braylons medical records and testing faxed to Dr. Nath before the appt. We met with him and within our 20 appointment Dr. Nath suggested Botox injections right away, MOD QUAD surgery asap, the TRIANGLE TILT surgery after that, and wrist tendon and hand tendon transfers down the road. OKay...I have an older daughter who was born with a heart defect (surgery at age 3), eye surgery at age 5, and who suffers from conductive hearing loss (option for surgery in future). I am not a rookie when it comes to patient/doctor relationships. My experiences in the past have involved thorough evaluations, non-time-restricted Q&A sessions, etc. At first we were all excited about the opportunity to get Braylon's functions from 5% to at least 70% (as Nath told us yesterday). I am just baffled that he could suggest such strong surgeries for Braylon after meeting him for such a short time. I had asked Braylons regular Dr....Dr. Iskandar what he thought about the MODQUAD surgery and he said that anything that we did before the two year waiting perioid after the nerve transplant surgery that it would/could interfere with what they already did. I realize that doctors don't always see eye to eye. But I am really thinking about getting a third opinion. I don't know where to go though for no one elsedoes this MODQUAD surgery!! I know that insurance will be a pain. But Iskandar is a nuerosurgeon that deals with BPI injuries. I can't keep paying to fly all over the country to have my little guy seen, but of course I want to do what is the absolute best for him.


Please to all of you, I am asking for any information that you can give me. Thanks in advance!

[katep]

Tons of doctors do tendon transfers, which is the "generic" term for Nath's ModQuad. Tendon transfers of the latissimus dorsi and teres major have been around for over a century. Dr. Nath has tried put his trademark on a surgery (he cannot patent it) by giving it a catchy name, is all. Every doctor does the tendon transfers a little differently. Ask very direct questions (to doctors who give you that opportunity!!) about outcomes, measures, and any changes in approaches that they've made over the years (and why).

Kate

[Carolyn J]

WELCOME "Tiggerlover247" to our UBPN Family! I am very happy you ufound your way here. THere is alotof Information,SUpport , Friendship, & instant understanding wherever you are. There is NO such thing as a dumb question on any Forum Boards. ( we adults with OBPI's love to answer questions).

Hugs to you & Braylon,
"Gramma Carolyn J
LOBPI/72...[my "story" is to the right--> ]

[ironmansmom]

it is hard to hear that your little one needs this, then that, than another...believe me...my son has had 8 surgeries...I'm not here to say that you must go to Dr Nath by any means, just to say that he sees this injury SO often, he can tell in a minimal amount of time what needs to be done and he is pretty much on target. My son has had surgery about every 18 months..he is 12 now. He had Modquad done when he was 2. He had triangle tilt done when he was 11. That is a wide time frame!!

Have you contacted Dr Kozin at Shriners in Philly? He is a wonderful doctor who we have seen as well!!

But trust me, I have been to lots of nath's clinics, and it is a fast process and very overwhelming.

i can be reached at scriby95@yahoo.com if you would ever want to talk or vent

[Malimom]

It can become very overwhelming when doctors give you so many options or tell you that your child would need so mant surgeries. My daughter now 14months has had the mod Quad and the triangle tilt surgery. Both surgeries were were a success, although there will always be little issues she has the tightening of the elbow because her Biceps are so strong.

I would definately recommend Dr. Nath, his approach because he has done so many of these surgeries can be a little intimidating because he get's straight to the point. The insurance issue on the otherhand is a headache especially out of network. I am here in Houston were his practice is , but I meet so many people that say the insurance process can get tedious, but his staff stay on top of it. Ptay about , we all want to make the best decisions for our babies!

I have pics, videos, dr. Nath book (i can forward you whatever to help), I have mri's from my daughter where her shoulder was dislocated due to the injury (make sure you check that out). if you want any info or questions email me hbpsupport@gmail.com ( i'm heading a support group here in houston)or shajwandamccain@yahoo.com.

[KimW]

First off, welcome to the boards. It is so nice to find a supportive environment of those who are dealing with the same issues.

I think your instinct to get another opinion is a wise one. Just for another perspective, my daughter had the nerve transfer and "mod quad" with Dr. Nath. We saw him in a clinic as followup a few years later and he recommended another surgery, after seeking another opinion we decided against it. Not to say that Dr. Nath was wrong but to us the benefits did not outweigh the negatives in our opinion.

When your child is so young and the injury is "new" to you, you are eager to accept any recommendation that promises to help your child's arm function better. Unfortunately, there is no cure, no complete solution. Many of these surgeries are "band-aids" -- take some function here to put more function there. It is up to you, as the parent, to determine if the lost function and costly and painful surgery for your child is worth the new function. For some, it is -- for others, like my family, it is not.

I also cringe when I hear improvement percentages thrown out at parents. We were told our daughter would have 80-90% function after the nerve transfer. We aren't even close to that range after 10 years.

Check UBPN's medical directory for other specialists near you. Cincinnati has a BPI clinic. Also, my daughter has been seen by Dr. Waters in Boston, who is outstanding. I appreciated his willingness to be honest and forthright about what we could expect in the future.

All this being said, my daughter is doing wonderful. She plays soccer, rides horses, shows a cow in 4-H (I had no idea how challenging this could be for a bpi kid! ) and can throw a baseball with her uninjured arm harder than most boys!

Best wishes!
Kim

[momo5]

My 3 year old grandson, Matthew,was born with a LOBPI. He suffered the worst kind of injury where the nerves are completely torn out of his spine. He had nerve transfer surgery at 7 months and with therapy was able to get movement on his arm after a few weeks. He had tendon transfer surgery about 4 months ago. He has phsical therapy and occupational therapy 3 times a week. Now he can lift and straigthen his arm and with therapy has shown some improvement on his wrist and fingers since his last surgery. He wil probably need more surgeries in the future. We had done some research prior to his surgeries and had decided to see Dr. Nath. We contacted his office for an appointment and were told to send them a video of Matt who, at the time, was about 5 months old. Not long after that, we received a call telling us that Dr. Nath had scheduled surgery for Matt (without having ever seen him in person). This sent up a red flag and we decided against taking him to that doctor and decided on Dr. Pederson here in San Antonio. We couldn't understand how Dr. Nath could schedule surgery without having ever examined my grandson in person at all. My advice to you is to keep doing research and find a doctor you feel confortable with. Also, ask for references. They will not give you contact numbers to any of their patients, but any good doctors office will forward your info to other patients so they may, perhaps, contact you and give you the opportunity to ask questions about their experiences with that particular doctor. Of course, everyone's situation is different and what works for some patients may not work for others but at least this might give you some peace of mind when choosing a doctor for you child. Good luck with your little ones and God bless you.