Confused on what treatment should be given

[Drake's Mom]

My son, who is 6, was in the hospital for four weeks before being diagnosed with west nile. The virus got in his nervous system and damaged his nerves. All has healed except his brachial plexus. The damaged was to the point of no use in his right arm at all. It has been eight months and he is having improvements but only slight. The Doctors say this is about a three year healing process but i'm wondering if i should do more. Therapy is merely stretching and messaging. I had to push for electrical stimulation. How do i really know if we have a good doctor or not? He goes to a neurologist at Cook's children's in Fort Worth who says Drake is not a surgical case, but how do i know for sure.
Any help?

[Pier Jumper]

Drake's Mom

Sorry to hear of your son's exposure. My injury was caused by severe physical trauma which stretched the Brachial Plexus and caused avulsions. When there is traumatic blunt force that causes the injury, Doctor's can go in there and perform surgery and possibly repair the damage to some extent.

I think because the nature of your son's injury is viral, I do not think that surgery is the doctor's first choice. Performing surgery will create scar tissue which can hinder the nerves from fully healing. Your doctor's approach is wait and see if it heals on its own. If it heals on its own, the recovery would be far greater than what you could get from surgery. The question is "will it heal on its own ?" i think that it is fair to get a second opinion particularily from a doctor who specializes in West Nile. Sometimes, performing surgery will cause more damage because the brachial plexus is so intricate. Nerves grow and recover very slowly. Your doctor may be right but you should seek a second opinion just to make sure.

I am happy to hear that everyhing else has healed and am hopeful for a full recovery on his brachial plexus. It takes time and patience.

[ptrefam]

BP is a very specialized study. I would see a dr that specializes in this area. They may have more to offer. I know with Dustin the neurologist told us straight out that he did not deal in this area. I don't have knowledge about viral BPI but OT or PT and range of motion are very important. A BP dr could give you other courses of treatment if available. Some of the surgeries are time sensitive. Waiting 3 years seems an awful long time if you are only seeing minimal changes. Excersizing in water is great for the arm. But, please check the resources link at the top of the page to find a dr.
Sue

[Christopher]

Get your son to a Brachial Plexus Specialist. Tests like an EMG ( http://www.webmd.com/brain/Electromyogr ... on-Studies ) should be conducted to determine if the muscles in his arm are getting any signal at all from his nervous system. If his muscles are not, after a year to three years, they will not be able to function at all. The connecting junction between the nerve and muscle, the muscle plate, looses it's ability to translate the electro-chemical impulse that the nerve relays, and hence the muscle becomes useless. Exercise is crucial for neural regeneration. I don't know the details involved with virally induced nerve damage, but the signal that is generated through the nerves, in trying to move a muscle, is the crucial stimulant in the nerve's own regeneration. It's literally what motivates the nerve's growth. Unless a Neurologist specifically orders no attempt of movement, I would commit to doing it for at least 15 minutes 3 times a day... at least.

Easier said than done, it can be extremely demoralizing and depressing to try and move an arm day after day, month after month, that will not respond. But it is becoming more and more accepted with in the Spinal Cord Injury Community as the best way towards maximized recovery. Patience, consistency, and fortitude are key.

Massage, stretching and E-Stim are all good for maintaining blood flow, flexibility and muscle tissue. Just make sure you get to a good Neurologist that specializes in BPI to help determine if any of your son's muscles are in jeopardy due to long term de-innervation (well, the muscles aren't actually de-innervated, because the nerves are still connected, but the threat is the same).

I wish you and your boy the very best. I will keep you in my thoughts.


Best of Luck,
Christopher

[marieke]

Viral nerve destruction can fix itself, if it is just the myelin that is destroyed but will do so very slowly, 1mm a day. BUT often the underlying nerve is damaged or destroyed beyond repair and there is NOTHING one can do to fix the nerve, no surgery can do that in this case. So if the nerve cell body is damaged then there is nothing that can be done, they do not grow back, they do not heal. Which is why in spinal cord injuries for example people remain paralyzed, same if it is the axon that is damaged, but if the myelin (which covers the axon) is damaged it can grow back and the nerve will once again function, not always perfectly, but will work.

West Nile can attack the central nervous system, so the brain and spinal cord. In your son's case it would appear that the spinal cord was affected, and since it touches the CNS there is less likelyhood of any surgeries that can help, whereas if it were the peripheral nervous system, like in some Traumatic BPI or OBPI's then there could be a possibility of one or more surgeries being effective.

Though the nerves are attached, they may be de-innervated if the cell body is too damaged to work. An EMG is a good way to see what there is.

I was curious about this post and did a little research as I am very familiar with virally induced neuro destruction as i have transverse myelitis, caused by a neuroautoimmune disorder set off by a virua (for me a simple cold). I was initially paralysed from mid-chest down (T1) and regained much function except in my left leg, which unfortunatly was touched more as the nerves were too damaged to repair themselves even after the myelin frew back...

I wish you much luck for you and your son. He has recovered a lot from this and needs OT/PT.

Marieke (31, LOBPI and RN student)


Message was edited by: marieke

[Drake's Mom]

Thank you for the response, please keep them coming!!! i have learned more from the messages here in one day than i have learned in eight months from my son's neurologist!!! Marieke thank you for the info!! Drake's Dr. has never explained it in that way and i wish he would have. Drake has had an EMG in the first few days of being hospitalized but the only thing they told be was that he had "Brachial Plexitis". (they did say it was is his peripheral nervous system) We go see the Dr. tomorrow so i will definitely ask more questions. I have mainly relying on him to figure this out for us but i am losing confidence in his Dr. as the months go by.

[marieke]

Here, I found a site that describes what Brachial Plexitis is; it also is known by other names (throughout the years, names often change once they know more about the disease/disorder).

http://www.aafp.org/afp/20001101/2067.html

Marieke (31, LOBPI and futur nurse.. that's why I like researching things!)


Message was edited by: marieke

[brandonsmom]

Marieke
Hope you are using "GGODSEARCH" the search engine that gives back to UBPN !!!!

GAYLE mom of Brandon ROPBI

[marieke]

I usually do.. but I split my fundraisng between UBPN and Transverse Myelitis...
Marieke