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UC Nerve Damage/ 17-year-old newly diagnosed

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Posted 9/12/2013 7:53 PM (GMT 0)
Any updates? Thinking of you Bellas mom.
Posted 9/26/2013 10:48 PM (GMT 0)
Sorry for the situation. And I can't contribute any advice really.

But, whenever I hear anything about nerve damage I immediately think about Antibiotic Treatment. Cipro/Flagyl type. Based solely on my nerve damage experience, which has improved substantially over time, but took years for it to subside.

I just wanted to make sure your son never received IV antibiotics when he was first admitted/diagnosed etc. As this may be an alternative cause to look into.

Anyway - Just wanted to put it on your radar as a question to ask the doctors if he was treated with antibiotics for one reason or another.

Though it sounds like he wasn't. In which case I'm sorry to hear about the situation. But I can tell you that some nerve damage can be recovered from, but I'm sure everyone is going to be completely different in this regard depending on the cause/severity. There's always hope though.

Post Edited (Canada Mark) : 9/26/2013 4:54:15 PM (GMT-6)

Posted 9/26/2013 11:20 PM (GMT 0)
Thinking of you!
Posted 9/27/2013 12:01 AM (GMT 0)
Canadamark I have nerve damage and have taken both Cipro and Flagyl. I know I took the pill form before the nerve pain started but after it started that gave me the iv kind. I don't want to hijack the thread but I would like more info on this. No one know for sure what caused my nerve damage. I have been dx with two diff kinds of nerve damage: intercostal neuralgia and another one they say is because of being overweight.
Posted 9/27/2013 1:02 AM (GMT 0)
@Tedlove - see this thread on nerve damage from Cypro www.healingwell.com/community/default.aspx?f=38&m=2826002
Posted 9/27/2013 1:38 AM (GMT 0)
Our prayers and thoughts are with you. We pray that this difficult period will pass, amd that things will get better quickly. Doctor's can be very dismissive, I have learnt to take what they say as only a view amongst a myriad of alternatives.   
Posted 9/27/2013 1:50 AM (GMT 0)
I think CanadaMark made the right assertation here. My money is on antibiotics as well. Chances are he was unnecessarily put on some cocktail during his stay in the hospital.

If it was cipro, you have perfect grounds for a medical malpractice case since it's contradicted for individuals under 18. Unless he had anthrax or some other life threatening bacterial infection, there was absolutely no reason for him to take it.
Posted 9/27/2013 1:55 PM (GMT 0)
Sorry, my post was sent before completing...wrong button!

Our colo-rectal Dr. was friendly and dismissive. I kept my tone conversational and non-hostile since son was present in exam room. I expressed my dismay at having been given no information about Remicade prior to son receiving it during first hospitalization & that we get drug info even when filling a prescription. Said I would like to have at least been aware in order to make an informed decision. Dr. X said that was a fair request and he would correct that going forward...with an expression like "hey, I never thought of that before" ---

I asked if Remicade could have caused the arm nerve damage. Dr. X said he'd never heard of that!
Then he asked me "if the Remicade has caused this, why are son's wrist and hand function intact?" I said I didn't feel qualified to answer that.

Dr. X floated a new theory: that a rogue blood clot had traveled to the area & caused the damage. No one has ever mentioned this as a possible cause. I asked if such a clot existed, wouldn't it be seen on the MRI and/or ctscan that was done of the area. He said no, the clots dissolve "too quickly". What?!! The kid had been hospitalized w/ PE for four or five days when the arm went bad & had been receiving blood thinners all during that time...how on earth would a new "rogue" clot have formed???

I told him there's a warning about nerve damage in the Remicade prescribing info I'd found online.
He said there are "lots of things in the prescribing information; we'd never use any drug if we relied on that", etc. Compared it to chemo, i.e. side effects vs. benefit. I pointed out that chemo is the only systemic cancer treatment, whereas w/ UC patients have other, safer options. No reply on that one...

Then I asked why son had not received any prophylactic measures during first hospitalization to prevent DVT/PE when he was at such heightened risk. First Dr. X said he was not the admitting physician, then asked why I thought son was at heightened risk for DVT. I told him there are numerous articles in the medical literature addressing this issue. He said, essentially, we can't believe everything we read on the internet...

I pointed out that son is still short of breath, winded easily, his right lung is damaged, the clots in his pulmonary arteries are staying put as of now, and how are we supposed to deal with this? He said well, that will probably improve over time...

He said he would call the folks at Remicade and check into the nerve damage issue. He patted me on the shoulder and said "They're really good about returning my calls." I'll bet they are!

So next up is my appt on Monday w/ medical director at hospital. Have known him twenty years & don't think he will be evasive, but we'll see.

Thanks for the antibiotics info. When admitted first time he did receive IV antibiotics for several days, until a bacterial infection was ruled out. Will start digging through the records & make a list of meds received prior to nerve damage.

If antibiotics were the culprit here, do any of you know how long it would take for nerve damage to occur? His arm went limp within days of being started on those, via IV.

Thanks to all of you,

Bella'smom
Posted 9/27/2013 2:07 PM (GMT 0)
It's sort of basic standard procedure at hospitals when people come in with a big first time flare. IV antibiotics usually Cypro/Flagyll and usually IV prednisone at the same time.

Helps many people dramatically at first, but for some of us it doesn't go over to well.

I'd really probe them hard about this - and take comfort in the fact that some of us do in fact recover from the nerve damage. It's just not a fast recovery.
Posted 9/27/2013 4:00 PM (GMT 0)

Canada Mark said...
It's sort of basic standard procedure at hospitals when people come in with a big first time flare. IV antibiotics usually Cypro/Flagyll and usually IV prednisone at the same time.

Helps many people dramatically at first, but for some of us it doesn't go over to well.

I'd really probe them hard about this - and take comfort in the fact that some of us do in fact recover from the nerve damage. It's just not a fast recovery.

It's interesting that they do that for first time flares. I was fortunate enough to not be hospitalized during the onset of my diagnosis. A study done in 2011 found that 39% of fluoroquinolone prescriptions were unnecessary. It is always far more prudent to wait until a confirmed diagnosis, but the hospitals here won't do it because they want to cover all the bases. Unfortunately, this is why adverse reactions are so common here.

Australia is among the few countries to do it correctly. They tend to reserve FQs for serious infections. The result is less antibiotic resistant strains of bacteria in the population. I really wish I was born there now. :(

I'd trade permanent nerve damage for dog-sized spiders any day.
Posted 9/27/2013 4:07 PM (GMT 0)
I almost forgot! Dr X pronounced son's UC inactive and told him to go out and eat whatever he wants! No holds barred!

So, to be fair, it appears the Remicade did work on the UC. But we'll never know if a safer drug would have worked as well.

Naturally, son was ecstatic. I, the worrier, asked if we shouldn't be careful for a while, since there are foods that trigger symptoms or make UC worse.

You guys will love what came next: Dr. X says "that's never been proven" ---

Good God Almighty.


Some states require Drs to report any income from pharmaceuticals - speaker's fees, etc. Mine doesn't of course. Anyone know of another way to get this info?
Posted 9/27/2013 4:16 PM (GMT 0)
Omg! I do not know how you refrain from haulong off and clobbering those drs!!! I would be frustrated to tears. Stay strong and document everything! Start a binder! Watch his diet carefully! Honey and fruit just threw mw back into a flare i was crawling out of! It can be anything!
Posted 9/27/2013 4:24 PM (GMT 0)

Bella'smom said...
Sorry, my post was sent before completing...wrong button!

Our colo-rectal Dr. was friendly and dismissive. I kept my tone conversational and non-hostile since son was present in exam room. I expressed my dismay at having been given no information about Remicade prior to son receiving it during first hospitalization & that we get drug info even when filling a prescription. Said I would like to have at least been aware in order to make an informed decision. Dr. X said that was a fair request and he would correct that going forward...with an expression like "hey, I never thought of that before" ---

I asked if Remicade could have caused the arm nerve damage. Dr. X said he'd never heard of that!
Then he asked me "if the Remicade has caused this, why are son's wrist and hand function intact?" I said I didn't feel qualified to answer that.

Dr. X floated a new theory: that a rogue blood clot had traveled to the area & caused the damage. No one has ever mentioned this as a possible cause. I asked if such a clot existed, wouldn't it be seen on the MRI and/or ctscan that was done of the area. He said no, the clots dissolve "too quickly". What?!! The kid had been hospitalized w/ PE for four or five days when the arm went bad & had been receiving blood thinners all during that time...how on earth would a new "rogue" clot have formed???

I told him there's a warning about nerve damage in the Remicade prescribing info I'd found online.
He said there are "lots of things in the prescribing information; we'd never use any drug if we relied on that", etc. Compared it to chemo, i.e. side effects vs. benefit. I pointed out that chemo is the only systemic cancer treatment, whereas w/ UC patients have other, safer options. No reply on that one...

Then I asked why son had not received any prophylactic measures during first hospitalization to prevent DVT/PE when he was at such heightened risk. First Dr. X said he was not the admitting physician, then asked why I thought son was at heightened risk for DVT. I told him there are numerous articles in the medical literature addressing this issue. He said, essentially, we can't believe everything we read on the internet...

I pointed out that son is still short of breath, winded easily, his right lung is damaged, the clots in his pulmonary arteries are staying put as of now, and how are we supposed to deal with this? He said well, that will probably improve over time...

He said he would call the folks at Remicade and check into the nerve damage issue. He patted me on the shoulder and said "They're really good about returning my calls." I'll bet they are!

So next up is my appt on Monday w/ medical director at hospital. Have known him twenty years & don't think he will be evasive, but we'll see.

Thanks for the antibiotics info. When admitted first time he did receive IV antibiotics for several days, until a bacterial infection was ruled out. Will start digging through the records & make a list of meds received prior to nerve damage.

If antibiotics were the culprit here, do any of you know how long it would take for nerve damage to occur? His arm went limp within days of being started on those, via IV.

Thanks to all of you,

Bella'smom

Sorry I missed this initially. Nerve damage can occur immediately after administration of antibiotics. The risk is increased five fold when on steroids. The literature states that damages can even occur 6-12 months after administration of cipro. There isn't enough research out there on these antibiotics and only now are researchers beginning to figure out damaging effects.

Please keep us updated. Your son is young and has a chance to recover completely.
Posted 9/27/2013 8:02 PM (GMT 0)
Update on antibiotics: My son received Flagyl and Levaquil, both by IV.

Anyone?
Posted 9/27/2013 9:04 PM (GMT 0)
Levaquin is pretty much cipro. These class of drugs are called Fluoroquinolones antibiotics - they include avelox, cipro, levaquin. These aren't just your everyday cillin variety of antibiotics that are given to kids - they are heavy duty antibiotics that were originally designed to knock out anthrax and other nasty bugs during biological warfare situations. Because the drug can't differentiate between mitochondria and the bacteria in the cell, there is big time collateral damage associated with the drug. Simply put, the drug disintegrates cartilage and tendon tissue.

There are many, many contradictions with these class of drugs and doctors often prescribe them inappropriately to treat non-bacterial infections. The FDA had to be sued by a public advocacy group to put a black box warning on these class of drugs in 2008. Know that this is the biggest warning a drug could have, one step before it gets pulled from the market. Unfortunately, it's still used by stupid doctors as a first line antibiotic in the US and Canada when it should be reserved for life threatening infections.

I, like your son, was a victim of inappropriate use of antibiotics, and I experienced the classic neuropathy and tendonitis symptoms shortly afterwards. I went from being an active male who exercised regularly to being almost crippled. You won't find a single person here who hasn't been afflicted by these class of drugs. Many people link it to causing their UC.

I'm sure 90% of his nerve issues have to do with the antibiotics he was put on. All of this was based on the premise that he had a bacterial infection like c. diff, which he didn't. So it was all essentially for nothing.

I don't like this anymore than you do. Your doctor has some serious explaining to do. It is not given to individuals under 18 because they know that it interferes with collagen development.

Post Edited (StealthGuardian) : 9/27/2013 3:15:04 PM (GMT-6)

Posted 9/27/2013 9:46 PM (GMT 0)
oh stealth. They started both antibiotics before any labs came back...WHAT were they thinking?!
Posted 9/27/2013 10:05 PM (GMT 0)
How long did it take for the labs to come back? Like CanadaMark said, it's not uncommon for them to do that, which is just pathetic.
Posted 9/28/2013 2:40 PM (GMT 0)
I am just going to throw this out there- not sure where you live, but is there any possibility of transferring your son to a different facility? It sounds to me like this facility is in over their heads! I see it often as a nurse, small town/rural hospitals hang on to critically ill patients too long and end up causing more harm. Do you have a University facility closer by?
There are several things I have seen posted that concern me about the care provided....just a thought.
Posted 9/28/2013 4:27 PM (GMT 0)
nursemb23, I wish I could say we were in a small town/rural hospital...though it's easy to see why you might think so!

Sadly, not the case...

Please share w/ me your concerns...I'm a layperson & need all the help I can get!
Posted 9/28/2013 4:39 PM (GMT 0)

StealthGuardian said...
How long did it take for the labs to come back? Like CanadaMark said, it's not uncommon for them to do that, which is just pathetic.


stealth, labs coming back by third day. Here's what he received:

500 mg levaquin via IV in ER (midnight)

500 mg flagyl via IV early a.m.

500 mg flagyl via IV late afternoon

500 mg flagyl via IV late evening

500 mg flagyl via IV early a.m.

Plus 100 mg Solu-medrol every 8 hours beginning same time as first flagyl - Solu-medrol cont'd until day before discharge.

His brachio plexal nerve damage presented during second hospitalization (for pulmonary embolism) - approximately 12 days after last antibiotic.
Posted 9/28/2013 4:42 PM (GMT 0)
Initially no DVT prophylaxis, that is a standard of care across the board unless the patient is ambulatory on a consistent basis. I was provided with SCDs, but refused to wear them because I was getting up so frequently to go to the bathroom, they posed a risk to my safety/fall risk.
Did they start a heparin drip for the PE? Lovenox and Xarelto are not usually first line treatments for a PE...you are usually transitioned to those. Does he have any coagulation disorders that you know of? A PE is a rare thing for a previously young and healthy individual.
Is his liver being evaluated? This can contribute to coagulopathies also if not...
I also don't think Remicade immediately was the appropriate choice without trying other methods.
I'm also curious about how much anti coagulation is appropriate if he is still having bloody stools (this may be why they tried the Remicade so quickly)
I am not a doctor, nor do I have all the details of your sons case...but just a few things I would question.
Posted 9/28/2013 4:42 PM (GMT 0)
Initially no DVT prophylaxis, that is a standard of care across the board unless the patient is ambulatory on a consistent basis. I was provided with SCDs, but refused to wear them because I was getting up so frequently to go to the bathroom, they posed a risk to my safety/fall risk.
Did they start a heparin drip for the PE? Lovenox and Xarelto are not usually first line treatments for a PE...you are usually transitioned to those. Does he have any coagulation disorders that you know of? A PE is a rare thing for a previously young and healthy individual.
Is his liver being evaluated? This can contribute to coagulopathies also if not...
I also don't think Remicade immediately was the appropriate choice without trying other methods.
I'm also curious about how much anti coagulation is appropriate if he is still having bloody stools (this may be why they tried the Remicade so quickly)
I am not a doctor, nor do I have all the details of your sons case...but just a few things I would question.
Posted 9/28/2013 5:07 PM (GMT 0)
So, my major recommendation is to immediately find a better hospital and gastroenterologist.

It's not even that the GI was dismissive--it's that these doctors can't give you a reasonable explanation of what's going on. I can't even really suss out what's going on, and it doesn't seem like you've been given an explanation that makes any sense.

That's not to say that they should know exactly what caused what--just that they don't seem to be explaining anything to you sufficiently. NOT GOOD DOCTORS.

I am so sorry that your son is going through all this.

I did a little digging, and it sounds like DVT and neurological disorders are EXTREMELY uncommonly side effects of Remicade. Even if your doctors had discussed the risks of Remicade with you before treatment, those probably would have gone unmentioned. My doctor told me the risks ... and those weren't mentioned to me either. So I don't think it was unprofessionalism or bad doctoring there. It's still not clear if either condition was directly caused by the Remicade, but even if they were, they're such incredibly unusual rare side effects that I doubt they would have told you anyway.

Also ... your son can already eat whatever he wants. During flares, certain foods might worsen his symptoms (usually roughage or spicy/greasy foods), but the foods aren't directly responsible for the flare. Avoiding those foods won't make UC go away, but BRAT diets tend to be easier to stomach during flares.
Posted 9/28/2013 5:24 PM (GMT 0)

Nursemb23 said...
Initially no DVT prophylaxis, that is a standard of care across the board unless the patient is ambulatory on a consistent basis. I was provided with SCDs, but refused to wear them because I was getting up so frequently to go to the bathroom, they posed a risk to my safety/fall risk.
Did they start a heparin drip for the PE? Lovenox and Xarelto are not usually first line treatments for a PE...you are usually transitioned to those. Does he have any coagulation disorders that you know of? A PE is a rare thing for a previously young and healthy individual.
Is his liver being evaluated? This can contribute to coagulopathies also if not...
I also don't think Remicade immediately was the appropriate choice without trying other methods.
I'm also curious about how much anti coagulation is appropriate if he is still having bloody stools (this may be why they tried the Remicade so quickly)
I am not a doctor, nor do I have all the details of your sons case...but just a few things I would question.

nursemb23, "...no DVT prophylaxis due to patient's young age and non-smoking history. Ambulate..." is the note in the medical record by admitting internist. The AP did not discuss this w/ me. She did tell me the bowel wall showed thickening on the ct which indicated IBD and she knew of his family history, AND he was not ambulatory at that time, or for the next four days. He peed into a urinal at bedside & was sedated throughout his first hosp stay for UC. Much too weak & ill to walk around or otherwise ambulate.

The medical literature I've uncovered thus far says UC (and all IBD) patients are at increased risk for blood clots and should receive DVT prophylaxis. The risk is amplified further still by 1.) active IBD, 2.)his specific age, and 3.) hospitalization. Also, such patients are at greater risk for UC after discharge, and in some cases even greater risk than during the actual hospitalization.

Remicade started first is a huge question - see my earlier posts for more info on that one.

When diagnosed w/ PE from ctscan (ten days after first discharge) he received Lovenox in the ER, more the next day, briefly switched to Coumadin, then switched to Xarelto. Tests for coagulation disorders all negative.
I don't know about liver tests, will find out.

His first and only stool w/ visible blood was shortly after arriving at ER the first time. No blood since.

My take on all of this is that when IBD was first supected they should have 1.) started DVT prophylaxis
and 2.) refrained from administering antibiotics until the labs came back.

Remicade is still an open question, but the lack of DVT prophylaxis and the high-powered antibiotics may well have caused him lasting harm.
Posted 9/28/2013 5:35 PM (GMT 0)
sciencegirl, thanks for the info. Remicade did heal his colon, so I am grateful for that. But your point is good - Drs don't know everything they need to know about these newer drugs in order to prescribe them safely. And that's why, when adverse effects happen, they can't explain!

I don't think Remicade caused his DVT - that comes from the UC & the accompanying hypercoagulation.

As to the source of his nerve damage, the more I learn about flagyl and levaquil...

The bottom line for me is: why did they choose to pump all these high-powered drugs into my son? He needed to stop vomiting & stop having diarrhea. He needed fluids & possibly steroids. He needed diagnosis before anything else was done to him.

So now we have multiple serious issues to deal with, in addition to the UC...am certain everyone on the forum would agree the UC is enough!
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