does anyone else have a severe bpi?

[admin]

Hey Everyone! I have talked with you all before but I haven't really gotten into details about my son Tyler's injury. Tyler was born premature weighing a whopping (sarcasm) 5lb 12oz and recieved a complete right bpi. He had nerve grafting surgery back in February with Dr. Grossman in Miami whom I am having some doubts abouts. He hasn't called since the surgery to check up on Tyler and he doesn't talk to us but for a few minutes when we go down there after we've drove for 10 hours. We are just now seeing some improvement (thank God) in Tyler's upper arm. Where it did just hang limp, he is now using it to crawl and to support his weight. But we still aren't seeing anything in his wrist or hand. And I keep thinking to myself, what good is an arm without a hand? I am just so worried everyday about him. I wonder if he has the worst case there is. Every one of his nerves were damamged. Has anyone had a child with a severe/complete bpi and had return in the hand? I am thinking about taking Tyler to TCH because I am afraid I am not doing all I can to advocate for him. He is 13 months now and I don't know if there is any other surgeries he should be having or therapies. All I was told was to wait until a year after the surgery before I can see the benefits of the nerve grafting surgery and that he would probably need more surgeries later on. If anyone can offer any insight I would be so grateful, I just feel like I am going crazy with worry. I know that I should give it to God, but I am a mother who loves and adores her baby.

[Francine_Litz]

You absolutely need to get more opinions.... there are bpi clinics all over now. Go to TCH - go to Boston - go to the biggest clinics and see what they say.

The fact that Tyler is getting some upper arm movement is great - let's not discount that - it means that some connection is there!

BUT - I truly understand that this waiting game is just the hardest thing in the world. There is free airfare available - go and find out from other docs.

I know you are crazy with worry and I completely understand - I remember when I took Maia to TCH for a 2 minute EMG just to find out if her nerve graft "took" - I just couldn't wait any longer!!

http://www.injurednewborn.com/maia/travel.html
there's the listing for the free airfare - make sure you contact tami@ubpn.org -she's great!

big hugs,
You keep on loving your baby and you keep on being that sweetpie's advocate - you are your child's best and ONLY true advocate!!

-francine

[admin]

My advice is to talk with Dr. Nath at TCH. He is amazing and will tell you straight up what is going on with your child. You should get Francine Litz's attention as she knows EVERYTHING on this board and would have all of the info as to how to get a hold of Dr. Nath.

Karen

[LisaL]

Where are you from? We live in Charlotte, NC. Dr. Nelson from TCH is in Charlotte now. She is starting her own BPI clinic. There are also other BPI doctors around. Our daughter had the primary surgery at TCH. She only had C5 & C6 nerves injured. It did take a year for us to see her move her bicep. Good Luck. You can e-mail me if you would like more information.

Lisa
Lisagor@carolina.rr.com

[JaimeC]

My son's name is also Tyler. He was born in November of 1995 with a complete severe bpi of his left arm. Unfortunately, we never found out about the possibility of nerve grafting until he was 2 1/2 years old, and of course by then it was too late. He had absolutely no hand movement until he was past 6 months, and then it was only tiny finger movements. Because it was a complete bpi, time was of the essence to get re-innervation to his hand and because he didn't get it, he's had a poor recovery of hand function. He now uses his arm as a helper arm, and has little useful movement of his hand. However, he gets along pretty darn well considering. Since your son had nerve grafting, hopefully, he has a better chance of recovery of the hand. Because of the distance the nerves need to travel down to the hand, it makes sense (maybe?) that you haven't seen any recovery yet. I hope it's just a matter of time.
You'll hear a lot of responses from a bunch of knowledgeable people on this board. They'll probably help you more than I can, but I wanted to tell you our experience.

[m&mmom]

Hi,
My son Matthew has a severe total bpi injury. The nerves that were injured were C4-T1. Matthew's first two surgeries were done at TCH, this past one was done at Shriner's in Phila, PA (I was wondering how they were going to compare to TCH and we were not in the least bit disappointed.) We have always gotten a few opinions, for us it helps to make the decision easier.

Cindy

[jennyinsandiego]

My daughter Elizabeth is 14 months old. Her injury includes the whole thing. She had ruptures of c4-c6 and avulsions of c7,8 and t1. She had four nerve grafts and "clean-up" at the age of four months and mod quad at 11 months. She still has nothing but a reflexive grasp. although she can raise her arm straight out to about 90 degrees and we are noticing that she has sensation (of which she had none before). Waiting is so hard. She never crawled but has recently started walking. Poor baby has to break her falls with her face as she can't catch herself. I get so angry when I watch her.(whole 'nother post!) We were told due to the severity of her injury to expect 5-6 operations.
Re: the doc, Dr. Nath never called to check on us either. But I didn't expect him to. He is WONDERFUL at responding to questions from us though, and quick when we have emailed him. Explaining everything to your satisfaction is really important, but I don't judge on bedside manner.
Feel free to email me if you want.
good luck,
Jenny

[admin]

I have several friends whose children had surgery or surgeries at TCH and Dr. Nath never phoned them for any type of follow-up. In all honesty, I don't think that is terribly unusual. I also think that with an injury of that severity, especially involving the hand the return is VERY, VERY slow to come and to what extent it will return may not be known for a long time to come. I don't think the nerve regeneration would even really begin to hit the biceps for 6 months. How long did Grossman tell you it would take? Did you ask him? We have seen Grossman too as a second opinion and he may not have had the mellow, easy going, I will sit here all day if you need me like some of the doctors but he was very generous with his time, but maybe that is because he saw my list of questions and knew he wouldn't be leaving the door until he answered every single one of them. LOL! This injury is so tough and requires soooo much patience. Hang in there it is still early. Call Grossman and get him on the phone now to answer your questions and concerns and get another opinion too. Your child and your peace of mind is worth it! Best wishes to you.

[danar]

Sabrina had nerve graphing with Dr Grossman. It was about a year before we saw major improvements. I know that Dr Grossman isn't very talkative but in my opinion I think he performs miracles. I have met other specialist that are the same they just seem so focused on the injury. I did have second opinions with the TCH doctors I do believe in second opinions. If you do have questions though call and talk to Lorna at Dr Grossman's office she is extremely knowledgeable. If you need to talk or want to email me any questions feel free. My name is Dana and me email address is sleeplessinfl2000@yahoo.com.

[admin]

Your son's recovery from a graft just 6 months ago is amazing in an injury that severe-get second opinions for any secondary surgery if you want to, but it sounds like there is no problem at all from the primary surgery. It's normal to worry but have faith, these things take a long time, many kids take much longer than your son has. Good luck.