HealingWell
Search Close Search
☰

UC Nerve Damage/ 17-year-old newly diagnosed

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
12 3
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/6/2013 4:16 AM (GMT 0)
Hello everyone,

The boy remains hospitalized, see prior thread on blood clots in lung. Slowly improving. Breathing and peeing on his own today!

But a new wrinkle - yesterday he lost the use of his left arm from elbow to shoulder. Wrist and hand still okay. He threw up in the MRI last night, so will be repeated tomorrow. Some of the doctors ventured this sudden nerve damage is UC-related.

Any thoughts?

Thank you,

Bella'smom
Posted 9/6/2013 4:55 AM (GMT 0)
I have UC and also have nerve disorders. They cannot say for sure my nerve disorders cause. There are many very safe nerve meds that can help. I know you must be scared but during my research for my own nerve issues I found lots of people do regain full use. Good luck.
Posted 9/6/2013 8:04 AM (GMT 0)
Did your son get MCP?
Posted 9/6/2013 10:53 AM (GMT 0)
You need to backtrack a bit and tell us what medicines they put your son on at the hospital.

There is no connection to UC and nerve damage unless your son reacted to something he was put on.
Posted 9/6/2013 1:11 PM (GMT 0)
I can't help but think this is not nerve damage but the result of blood clots.
Posted 9/8/2013 12:54 AM (GMT 0)
Two neurologists have now (Friday and Saturday) stated flatly that my son's nerve damage was caused by Remicade.
He had his second Remicade infusion on Thursday. We are frantic and will now hold our breath to see what happens next.

His right arm is affected from elbow to shoulder. He is 17 years old, an athlete, and was in perfect health before this nightmare started.
Posted 9/8/2013 1:01 AM (GMT 0)
I am feeling your pain, I have a teen daughter and I can only imagine the position you are in as his mother. My heart goes out to you. All I can say is that kids are so resilient and he is probably a scrapper!

As an athlete he goes into this strong!!

Pls keep us posted and come often!
Posted 9/8/2013 1:24 AM (GMT 0)
So sorry to hear that it's not going well. I would have been in shock if my high school sports/health were taken away from me like that. Remember, this is just one piece of his life (a huge one right now) and he will get better someday and have a normal, good life again. He'll go to college, maybe get married, own a home, travel the world....? :) Keep truckin! I'll be praying for you both!
Posted 9/8/2013 12:24 PM (GMT 0)
That sucks. Everyone always poo-poos the risks of Imuran, 6MP, Remicade, and Humira like they aren't really anything to worry about. That's certainly not true for those that did have bad side effects. Hopefully this is short term.
Posted 9/8/2013 3:36 PM (GMT 0)
MCP = Metoclopramide

My doctor told me it can cause permanent nerve damage although that is really rare. He says if it happens though it's permanent. He refused to prescribe to me.
Posted 9/9/2013 4:17 PM (GMT 0)
The doctors now say the nerve damage is permanent, that the boy will never regain the full use of his arm.
And to that I say: nuts.

To those of you who pray, I ask for your prayers: that the arm is restored, and the ghastly Remicade does no more damage to this kid.

Thank you.
Posted 9/9/2013 5:23 PM (GMT 0)
Oh, I am so sorry to hear they are saying that. Are you stopping Remicade? What next?
Posted 9/9/2013 6:14 PM (GMT 0)
Are you stopping??? Pls let us know! Best to you and your son!
Posted 9/9/2013 7:05 PM (GMT 0)
I hope you are not doing any more Remicade. That would be a bad idea.
Posted 9/9/2013 7:31 PM (GMT 0)
"I hope you are not doing any more Remicade. That would be a bad idea."

what do you propose she do? Asacol?

Second, it's not proven that remicade did whatever. Red has like 40 autoimmune diseases and thats before any biologics. Odds are that it is, but I mean, he only had 2 infusions. It's possible the blood clots have something to do with it.
Posted 9/9/2013 7:45 PM (GMT 0)
I hope the docs are wrong cry
Posted 9/9/2013 7:51 PM (GMT 0)
"Two neurologists have now (Friday and Saturday) stated flatly that my son's nerve damage was caused by Remicade."



Nerve damage, blood clots? It would be foolish to try Remicade again. That's just asking for dire possibilities.
Posted 9/9/2013 7:52 PM (GMT 0)

Bella'smom said...
The doctors now say the nerve damage is permanent, that the boy will never regain the full use of his arm.
And to that I say: nuts.

To those of you who pray, I ask for your prayers: that the arm is restored, and the ghastly Remicade does no more damage to this kid.

Thank you.

Doctors say a lot of things, many of them very premature! When was Stephen Hawking supposed to die again? One thing seems to be true in these cases: those who keep their hopes up improve, while those who submit to the fate the fortune-telling doctor prescribes them will get that fate. Sounds like you have the right attitude. Never quit.

What a tough situation, stay strong, your son has my prayers. He'll come through.
Posted 9/9/2013 8:03 PM (GMT 0)
"Two neurologists have now (Friday and Saturday) stated flatly that my son's nerve damage was caused by Remicade"

Did they do tests, how did they come to that conclusion. Having no other posibility, if I was one of the neuro, I woudl have said the same thing. I mean, we have to blame something here.

Most likely it is the cause and probably it is best to ceese that biologic and see what is going on. However, given the fact that you've reached biologics I am assuming that you've tried lower level meds.

I have no solution here except to do clinical trials. The rest are pretty much a shot in the dark. Diets, FT, those are pretty much "who knows" and they certainly don't work right away in most cases.
Posted 9/9/2013 8:09 PM (GMT 0)
As the dad of a 17 year old girl who has suffered terribly over three years. My heart goes out to you. We did Remicade and moved on as it stopped working. We never stop holding out hope that the next path will lead us to something. Currently we are on the Lyme disease path, since she was diagnosed by a specialist. We research constantly and will never give up. My daughter is one tough cookie. Your son is not alone and neither are you.
B
Posted 9/10/2013 2:10 AM (GMT 0)
thanks to all of you for the support. It is a great comfort and helpful to us.

No, he won't be staying on Remicade.

Somedude: Remicade is the first drug he was treated with, although we have since learned others should have been tried first. He was first diagnosed three weeks ago. My earlier posts tell how it all went down.
Posted 9/10/2013 2:26 AM (GMT 0)
so which is it gary - dr's are always right ? or are they always wrong ?or is it just your docs that don't know what they are talking about ? make up your mind !

 

Posted 9/10/2013 2:30 AM (GMT 0)
bella's mom - so sorry to hear this - while I will add your son and you to my prayers, I have to believe that the docs are being a little premature in their thinking - we all know that doctors have been wrong when it comes to predicting paralysis - they do not KNOW -
Posted 9/10/2013 2:41 AM (GMT 0)
I feel for you. I so hoped the Remi would work for his bowel. Never heard of a reaction like that. Did your gastro concur? My only advice tonight is to ensure you have the best minds you can find for him. Get to a teaching center of excellence. I cannot recall where you are. Hugs.
Posted 9/10/2013 4:44 AM (GMT 0)
I know that lack of B12 can cause nerve damage...never knew Remicade could do that...so sorry for what you and your son are going through. I hope he'll be okay, he's got enough to deal with, how heartbreaking :(
✚ New Topic ✚ Reply
123