The solumedrol is open to question. The underlying reason for the DVT/PE is the change in his blood coagulation directly caused by the UC. Additional risk factors were dehydration and hospitalization...
Update to Stealth Guardian: William has been on Lialda since the Remicade was discontinued. He continues to have liquid diarrhea and severe pain. We will be seeing a new Dr on Tuesday, the head of...
I know, I know...really my visit w/ the Med. Director yesterday was a courtesy, AND I am interested to hear the half-baked reasons they offer to explain these errors. AND I want them to come up with...
Update: Met with Medical Director of hospital yesterday. About what I expected. My questions: Why was he treated w/ Levaquil and Flagyl with no evidence of infection & without telling us? Why wasn't...
Quote: Stealthguardian: "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...
There was an interview on "Fresh Air" last night on this subject. It's online. In Kentucky (where I live) the pharma folks pumped in about 300K prior to the legislature voting against making the...
Hi Katmom! I know the biopsies were done, but I'll have to look in his medical record for the results...ha ha wouldn't that be the ABSOLUTE LIMIT??!! If he'd never had UC at all?! Really can't stand...
Both CTs and MRI of pretty much the kid's entire body. No tumors or muscle/tendon injuries seen. Just a dead arm. No IV infiltration. Other posters here brought up the antibiotics (Levaquin and...
Side note re: flagyl and levaquil At least half a dozen hospital docs have examined & weighed in on sudden loss of left shoulder and arm. Their opinions have included inflammatory response, Remicade,...
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...
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...
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...
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...
oh stealth. They started both antibiotics before any labs came back...WHAT were they thinking?!...
Update on antibiotics: My son received Flagyl and Levaquil, both by IV. Anyone?...
Babe, I thought thimerosal was no longer used in vaccines. Is that wrong?...
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...
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...
bw21, the medical literature that seems definitive on the subject dates back farther than that, although it's clear that the recent (2010 and forward) articles are easier to find, at least for me......
Pluot, thanks for the info and sharing your hospital name....
beatUC, I am sorry you had to go through this. Don't blame you one bit for being upset. ByebyeUC: can you share the approximate length of your non-surgical UC hospital stays, and the name of the...
beatUC, were you hospitalized before the DVT occurrence, or did it happen in the hospital? How many days were you immobile before it happened? Yes, there are simple preventative measures that can...
I'm afraid I am only an after-the-fact advocate...all I do is react. Hope to get out in front of this eventually....
Katmom, we're in Lexington, Kentucky. We have two second opinions coming up at the University hospital (this is not where he was treated in prior hospitalizations). Mayo & Cleveland are not realistic...
DMC2011, I'm meeting w/ the hospital medical director next week in search of any possible explanation. After wallowing in research for days, I don't believe there is one....
garyl'ville: It is the IBD itself. IBD routinely causes a cascade of vascular problems, including what is called a "hypercoagulable state" which in turn accelerates clot formation. This situation is...
Because I'm so new to this forum, I'm going out on a limb & posting info that may be known here already: In a nutshell: People with inflammatory bowel disease have double the risk of developing a...
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...
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...
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...
My son had his 2nd Remicade infusion today. We are optimistic! I have made a 180 since starting two weeks ago - I was v. worried, but he's had no vomiting and almost no diarrhea since a few days...
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...
Thanks for your good wishes. My first chance to update. Still in hospital in rough shape. Blood thinner to prevent new clots, but he can't have the so-called clot-busting drugs because of UC, too...
Update: blood clots in right lung. Admitted to hospital....
Hi all, My son has been complaining of a sharp throbbing pain, started near right lower rib area & now radiating toward his spine. This has gone on all day. Temp now 100.0 & says it hurts to take a...
somedude, what is LDN?...
HillHunter, I will reup my "good jobs" & thanks for the reminder. BTW, you are doing a good job, too!...
Pluot: I'm really sorry I referred to it as poison. I would never do so in front of him. Really regret saying that! Everyone: My understanding is that our medical team decided to go "top down" and...
thanks soystud, that's what I'm thinking - we let the Remicade do its work as fast as possible, then try different things, one at a time....
Hello all - My son had dramatic sudden-onset illness, hospitalized, colonoscopy and other tests diagnosed severe UC, entire colon. First Remicade in hospital 8/21, second scheduled next week. As much...
Hi Pathogenkiller, I'm looking for supplements for my son & saw your post. Did the Jarrow formula help you? Why did you stop taking it? thanks, karen...
Adventureuc, the diet thing really struck a nerve with me. We're only two weeks into this, but much prior experience w/ other ills & there is no doubt - your GI is not a true physician - she's a...
Hi Science Girl, My son's UC was diagnosed in the hospital last week during his first flare (we thought it was appendicitis). His colonoscopy revealed severe disease the entire length of his colon,...
I"ll start the Metagenics right away. But what about Metamucil? Haven't heard that yet & always thought Metamucil was for constipation....
InSoFla, thanks for your suggestions. I've added probiotics & taken away lactose and most gluten. I hadn't heard about the vitamin d3 levels, so we will check that, too. I'll start adding l-glutamine...
Old mike, for what it's worth, my newly-diagnosed 17-year-old plays baseball, the teams eats almost nothing but junk food on the road, and they all use that muscle-mass powder sold in health food...
Thank you, songlady, for the encouraging words. We are doing our best....
Wow, the things I've learned about, most of which I'd never heard of only 2 weeks ago. our colorectal Dr. says the whole point of the two-hour infusions (for the first few) is to limit reactions....
Thanks everyone. Katmom, what are your options now? From everything I've read thus far, we may get a few years of remission with Remi...but after that, is there another drug option?...
P.S. to Kat: Is your daughter's UC confined to one area, or entire colon?...