Sores that won't heal - Need Advice!

[Lucky mom]

Hi! My sweet BPI girl has had sores popping up on her Erb's Palsy arm since August. They are all along the same nerve path but do not fit any diagnosis. Since August, we've tried just about everything and we've consulted with the best in our area and beyond and no one can figure them out but they all think they must be BPI related since there are no other open wounds elsewhere in her body. The only thing that seems to heal them is to cast the whole arm. Once we take off the cast, they break open again. She's been in a cast almost non-stop since Dec. We all know how horrible that is for a BPI-er.

Does anyone know who I could go to that has some decent experience with BPI wounds. We went to our friends at Shriners in Phili and they gave up.

Any advice? Thank you so much for any leads!

[AngieD]

I am assuming they have ran blood test and or swabbed the sores to see what it actually is (bacterial, fungal etc...). Also have you seen a neurologist.

[Lucky mom]

Yep. It comes up as a staph infection but antibiotics aren't healing it. (We've been trying for 8 months). It's not MRSA. We read that sometimes BPI wounds need temp control to heal them. We're trying to find out what doctor/specialist would know about healing tough sores/wounds in BPI.

[Carolyn J]

Have you tried the "Wound Care Clinic" at your local Hospital...the one that Diabetics use for their healing of wounds?
Let us know and keep us updated as it helps us all.
Carolyn J [all things BPI ]
71/LOBPI

[minniem]

Like Carolyn my advise is go see someone who specializes in wounds like diabetics get. The other person I would turn to is a neurologist that works with spinal cord injuries.

I too get wounds that will not heal. For me it happens two ways. Either I hurt the arm and fail to notice it fast enough. The other problem zones is where my bra strap sits, my elbow, and my fingers.

Paralysis is what causes everything to heal so slow plus I personally think the skin is more fragile. I have a friend who is a paraplegic and he gets sores as well on the paralyzed areas. The last time I ended up going to see a neurologist at his advise when I just could not get it to heal and the neurologist actually knew what to do. Most of the time I end up getting the run around or the strange looks or comments.

This neurologist worked with paralysis and knew exactly what I should do to try prevent them as well. For me personnally I had to learn to be more careful of my arm.

[F-Litz]

Maia woke up today with what looks like BITES on all of the bpi surgery scars! They were everywhere - big, red and awful looking. I have no clue what this is yet but will keep a careful eye to see what's up.

But about healing sores, infections, cuts, burns, etc.... Maia's arm with bpi does not heal well and there were times when even antibiotics didn't help. The only thing that helped was using her TES machine and usually that works almost overnight -- no more than 1-2 nights and whatever is there is gone by then. It's miraculous.... well it increases circulation both in and out so it does what the arm can't do on its own.

Everytime Maia had a post surgery splint on, she would get a severe staph infection where the piece held her thumb in - the thumb webbing. She had 2nd degree burns last year. She's had numerous cuts, etc that got infected. And I used it the first time for this reason when I researched and found that they were using electrical stimulation for diabetics for wound healing - so I thought hmmmmmm - why not try it - it can't hurt anything. And it worked.

TES is the threshhold electrical stimulation (microcurrent) that is worn all night long. I did a placement in places that were uninfected --- when she was burned there was only one area on the scapula that I could place an electrode on - didn't matter - it got that one infected spot cleared up overnight.

And this is why I think that everyone with a bpi should have a TES unit in their medicine chest.

Alternatives to this might be acupuncture and ion pellets (that an acupuncturist would give you and show you where to put them).

[Jmarcellus]

My 8 yr old ROBPI also gets very bad sores only on the affected arm and hand. I went to all the specialists I could. No one had any good answers. Vascular surgeon said her circulation was fine. Dermatologist took a swab and didn't have staph. Was told just to put antibiotic ointment on it. Her finger nails also come off and get infected. We started using a wrist splint and her fingers and skin have been doing so much better. Maybe she is just more cognizant of the arm with the splint? or maybe the splint is keeping it in a better position so the circulation is more effective.
Francine, thanks for the advice on the TES. We will use that as well.