Surgery for LJ AGAIN, so frustrated with this #X%#CD!

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Don't lose hope! You can still up the dose of Remi or increase the frequency of infusions right? If I remember correctly, LJ was not on the maximum dose?
I think there are several moms here with kids who needed Remicade more frequently or/and at a higher dose. M was one of them - 10mg/kg every 4-5 weeks.
 
Thanks everyone for the much needed encouragement
Today was just really long & hard. Yesterday he went 6 times but all formed pieces. Today he goes at least a dozen times, more like sand.
I feel so bad for him, when I look at him I literally want to cry. I'm not a tearful person but my heart is just breaking for him. And, I spent the whole day making myself nuts worrying about the stupid c diff coming back.:ybatty: (yes I'm still bleaching like a crazy person:yfaint:)
Praying infusion #4 tomorrow gives him some much needed relief.
Thanks for listening
 
At the infusion now. They did pre medicate with Benadryl since he had a reaction at infusion #3 (tightness in his chest, short of breath) so he fell right to sleep.
The doc left a note to up the pred to 40mg for 1 week then drop to 20mg.
We have an appt with him Monday so I will be able to verify the plan then.
Maya, yes he is on 5mg, so there is room to move with it. GI office said that we needed to wait the 8 weeks because the ins co requires that after the initial loading dose. I believe now going forward we can adjust the interval.
 
UGH! Gmama! I am praying right along side you! It is the rare child at our infusion center who is able to make it the full 8 weeks. The 8 week interval was developed based on the adult population and adults metabolize the drug a lot slower than kids. Kids burn through the stuff with their fast metabolisms. Hopefully the doc will be able to play with the schedule and dosage but I would hope also that he is able to pull the antibody test and level test soon. No sense in holding on to a drug if the kid is developing antibodies and not all kids who develop antibodies have an allergic reactions...sometimes the drug just stops working.
 
Ok so what does everyone think about the prednisone situation?
He took 30mg for 27 days
Is taking 40mg for 7 days
Then is supposed to drop to 20mg for several weeks

I'm trying to get prepared for his GI appt Monday but of course we are supposed to get 6-8 inches of snow, so now I'm fretting about not being able to get there:yfaint:
 
Gee IDK...that would have been a huge and disastrous drop for O but maybe the GI is hoping this last infusion really took hold and the drop s warranted??

I am so sick of the snow it isn't funny! And it 0 degrees f here today! All the Easter and spring merchandise is out...really?!
 
Maybe he's thinking a blast of the higher dose will take care of any lingering stuff and the 20 will keep him there until he's sure the infusion is doing it's job. I would be interested to hear his reasoning.
I'm feeling for you guys and all the snow and cold. It's warmed up here the last few days and now I really have spring fever
 
We have had to drop by no more than 5 mg per week once DS would go up.
We aslo never ever were able to make it to 8 weeks.
DS had a higher dose and 6 week intervals .

Please be aware Benadryl will not stop or prevent a reaction.
Steriods reduce the risk but also can't stop it.
So keep that in mind when he has an infusion without steroids in his system.
 
Well it seems like our GI appt will be canceled for Monday because of the impending storm...I definitely have the winter blahs. I'll keep you posted on that.

Our news of the day...drumroll please...c diff test came back positive:yfaint:
2 more weeks of vancomycin & no school

He just can't catch a break
 
Your poor boy! At least that explains why Remicade isn't helping, hopefully it will start helping IMMEDIATELY once he gets rid of Cdiff.
Hope the antibiotics help!
 
Thanks JM! I do have hope that the Remi is doing more than what it seem because the symptoms have been from the c diff.
I can't believe the c diff is back...it just feels never ending! Ugh. Hate seeing him go through all of this.
 
CDiff:voodoo::voodoo::voodoo: But have to admit I was a little encouraged that maybe what he is experiencing isn't Crohns related. Gosh I hope this rounds knocks that nasty stuff out! When is his infusion? If it doesn't snow will they let him in the clinic for his appointment?
 
Maybe you have already looked into to fecal transplant, but I just listened to this People's Pharmacy on NPR last night (as a podcast). It seems like a great step to at least get this c.diff out of the way and get back to the other issues.

People say it sounds gross, but dealing with all of these tests, BMs, blood, etc, has lowered my gross meter significantly. I will take gross any day to improve my quality of life.

Good luck.

935 Forget the Ick Factor: Stool Transplants Can Save Lives
 
Well luckly they were wrong and we didn't get the huge amount of snow they were predicting so I did make it to LJ's GI appt
Side note: I was really GLAD they were wrong but seriously what other job can you have, be wrong, and not get fired!?! Meotorologists have it made!
Anyway, appt was good. JM you were right about the pred. Said he wanted to do a burst to get things moving in the right direction, but wants him to drop before other side effects start. Said there is no need to taper at that high of a dose after just one week. At even 20mg that is so much more than his body would normally produce he is confident there will not be a problem. (Today was his last day at 40, & we drop to 20 tomorrow)
Wants LJ on 250mg vancomycin for a whole month & not just the 2 weeks. Said this should take care of it. I'm crossing my fingers & everything else on that one.
Said in 2 more weeks (although he will still be on the abx) he should be able to make it back to school.
Good news is that a few days after his infusion, all of the cramping that he was having while he eats went away. So between less cramps and the pred his appetite has actually been really good.
 
Glad things seem to be moving in right direction and hoping the vancomycin knocks the c-diff out and everything else levels off. Yeah! for appetite. Shhh! Jack actually has a little belly. I'm sure it will go away once height takes off but right now it's really kind of nice to see.
 
Hey JM so happy that Jack is doing so well on the Remi! Yes! Love the appetite!

The doc was very positive that everything is headed in the right direction.
I am so hopeful that the Remi is doing more than what I was giving it credit for, but getting the c diff out of the way he will finally have a big improvement.
 
Well we dropped to 20mg last Wednesday & by Friday he went 8 time instead of 4 with much lower appetite:eek:, Saturday cramps started coming back & Sunday night fever 102, so Monday on the phone with the GI office.
Our doc is out this week but the consensus of other docs, nurse & nurse practitioner is that the taper was too much & the fever is a withdrawal symptom:ybatty:
Other interesting side note: nurse practitioner questioned why he was on vancomycin for a month, (positive c diff test after 1st round of abx after 10 days) then says that she doesn't think you should test for a cure because the toxins can show up for months or even a year plus. But of course nobody will go against the doc so she just ended up saying "well, stay the course. But don't test him after this round" (I'm not sure what the doc will say about that)
So starting yesterday we bumped him up to 30mg (from 20)
The fever has just been at night, but he is back to lots of cramps when he eats.
All of this is tough to watch, especially for the little upswing we had...now it feels like we are back in the dump. Ugh.
Thanks for listening.:smile:
 
We were told that too, which is why we didn't test immediately after we were done with the first course. We tested about 3 weeks after the first course, when M was still going to the bathroom a LOT and it was negative. It seems like different doctors say different things about testing, we were advised to test immediately after the first course of antibiotics by her pediatrician but her GI said no.
Hope things getter soon:ghug:
 
Ours was negative after the 10 days of flagyl. Personal opinion coming up... but if it is testing positive then those nasty buggers are still there and can become problematic at anytime even if they are not the current reason for symptoms. Get rid of all the little buggers I say. Kwim.
 
I do know what you mean:smile:That's what I told hubby after I told him what she said. It's better to get it treated. I'm not sure what to think for the next go around with the doc, though.
I am just so torn with this because the vanco is just hard on him. He is just in a desperate need of a break.
 
Could you call his GI and discuss your concerns? You both want the best for LJ, perhaps your GI could ask others doctors in the practice/hospital what they do.
Antibiotics really are the worst, M was miserable on them.
 
Sometimes what the nurse says and what the gi says are two very different things .
I would ask for the Gi to specially call you back .
 
MLP totally agree.
LJ will stay on the vanco for a whole month & God willing that will rid the c diff.
I'm sure we will retest. If the doc wanted us to retest the last time, he will want it again & truthfully I do want to know if it's gone. The abx are hard on any of us without IBD but it's so much worse for him. I just hate that he has to be on it.
So, as of yesterday I couldn't take it anymore. Called the dr & told them that LJ was still having lots of cramps when he eats, so the put him back up to the 40mg.
He still has a fever at night. Not sure if it is from not tapering or a virus. I'm thinking a virus fever would be all day? Maybe not?
Between having abscess surgery, the c diff, the uncontrolled CD, not tapering the prednisone, being on the abx, not being sure what the Remi is really doing, no wonder he has an unexplained fever & can't go to school:ybatty:
 
Sending hugs your way. I truly hope this is soon to sort out and relief will quickly follow.

C always had night fevers with his flares up until this last one.
 
Yes, they tended to last the length of the flare, at least before dx. Afterward, he was on steroids first but they didn't help so fevers persisted. On Remicade he has had two flares, one with fevers one without.
 
Does he take a probiotic?
The only thing that made a difference for DS was vsl#3 DS ( prescription)
DS has been on a large number of abx including clindomyacin no issues since he was on probiotics .
How long has he been on remicade?
It takes a while for things to heal especially if his body is busy fighting crohn's and cdiff at the same time .

Take it one day at a time - at more than one point I have wondered if things will get better.
Sure enough sometimes the med just needed more time to heal the gut .
 
Clash that's very interesting. He has not had a fever since this all started but he has not had this much stress on his body until now either.

MLP-LJ has had 4 infusions (3loading dose & one 8 weeks later 2/26/14)
I have him on florastor. Our GI has no faith in probiotics & doesn't think they are necessary. When he saw that I put him on the florastor he literally shrugged his shoulders!
Thanks for the encouragement. I know in my head that his guts are just a wreck between the Crohn's & c diff & the vanco, but in my heart I am just so desperate for him to feel good enough to get back to normal life.
 
Figured I would wait and do one big update.
Had a good surgeon appt. Said that we would plan to leave the setons in for about 6 more months or when they fall out, but was happy with the healing so far.
GI appt.- leaving LJ on 40mg pred, doing his next infusion(#5) at 8 weeks (4/23) but will increase the dose to 7.5 (from 5)
After a very LONG & drawn out conversation he finally did agree to prescribe VSL#3 DS. He is taking one/day...does that sound right?
We have finished a month of vanco & will retest for the c diff in 10 days. Praying every minute that the c diff is gone.
The BIGGEST news is that LJ finally made it back to school! (He has been home since 1/13) He is far from 100% but managed to get through the day.
Like MLP said...we need to take it one day at a time.
 
DS is on vsl#3 DS per his Gi . He started with two packets a day for a month then one packet a day for the past year almost.
Be prepared even though its prescription most insurance does not cover it at all.
It is very expensive .
We buy it in a 90 day supply so its cheaper.
DS can't stand the taste
Kool aid or string fruit juice helps to mix it in.
Good luck
 
We got VSL #3 as a pill -- very easy to take. M does NOT like drinking things! M took two a day for a while, I think it did help her.
 
Hope the C-diff comes back negative and things are moving in the right directions. Sorry I don't know anything about VSL#3 but I hope it provides some benefits for him.
 
Good luck Gmama, hoping with all my heart that the C Diff has been kicked in the butt!

Dusty. xxx
 
Thanks everyone!
I am planning on getting a sample to take Monday to retest for the c diff. I'm not even sure what to do if it's not gone...vanco again? How long? What dose this time? The vanco is so hard on him. The thought of it not being gone literally makes me sick. This is so crazy!
MLP- you are right, it's very expensive. 30 was $75. Dr was willing to do a 30 days supply to try it, but if all goes well then I'm sure you are right that 90 would be cheaper.
Maya- What does M take now? What made you stop the VSL?
I am so happy that LJ finally made it back to school, but I'm on pins & needles just waiting for him to fall apart. (I know that sounds awful, but he looks like he is teetering on the edge) We have 3 more weeks until his next infusion (which feels like an eternity) and with the c diff still looming, I just can't even let myself take a breath. I'm also waiting to get his blood work from last week. Ugh, scared what it will show.
Sorry, for sounding so negative. :(
 
Fingers crossed it comes back negative for c-diff. We finished week 6 today of our first 8 week stretch and I keep checking him for eczema and asking him how he's feeling. I'm sure he feels like I'm nagging the heck out of him but I keep thinking he is fine today but what if it hits tomorrow.
Hope blood shows improvement as well.
 
Thanks JM. I know what you mean. I'm just always waiting for the other shoe to drop.
Glad to hear that Jack is gaining & hope the next 2 weeks are smooth sailing!
 
Gmama -- really hope Cdiff is negative! I will keep my fingers and toes crossed for you!
M still takes VSL #3, sorry that wasn't clear from my post.
Keep us updated, thinking of you both!
 
Thanks Maya! I'm not sure how long he will last with the packets but is doing it for now. We may end up with the pills. Glad to hear that it is still helping M:)
 
Well a HUGE THANK YOU to everyone who was crossing their fingers & sending up prayers...just found out that LJ's c diff test was negative! I can't even tell you how happy I am!
His labs did look awful (to me), but for today I'm just so thankful that he is at least through the infection.
Remi #5 in two weeks, hoping he will turn the bend:)
 
Glad you are not dealing with c-diff anymore. I hope labs improve with the remi and since his body is not fighting the c-diff as well. Hugs!
 
Thanks for the update Gmama and what a fab one it is! :dusty:

Fingers, toes and everything crossed that the Remicade weaves its magic. :goodluck:

Dusty. xxx
 
So we are at Remi infusion #5 & LJ breaks out in a spotty rash on his face & his ears were bright red. Not itchy, nowhere else, says he feels fine, what do you think?
They stopped the infusion for about 15 minutes & gave him a steroid injection. The redness in his ear went down but still looks blotchy.
 
Sorry Gmama,
Sounds like a reaction to remi, I've heard benedryl, slowing the infusion down can also help.
Be sure to let the GI know.
Hugs!
 
Yup, sounds like a Remi reaction to me too. If he isn't doing the premeds of Benadryl make sure they do it at the start next time. Slowing the infusion helped for D too. D made it to infusion #6 and that was all for her. She started showing problems at the 3rd infusion though like what your son is going through.

It may stop at that, just keep really good watch. D started shortness of breath, tightness in her chest and massive nausea at the 4th infusion so I knew what was probably coming. She had 2 dosages of Benadryl, and they slowed the infusion to over a 6 hr period and she still reacted. We should have probably stopped at infusion 5 but the clinic nurse wasn't sending the info to our GI to determine that until infusion 4 when there was a more obvious issue.
 
The symptoms of an anaphylactic reaction may occur within seconds of exposure or be delayed 15 to 30 minutes, or even an hour or more after exposure (typical of reactions to aspirin and similar drugs). Early symptoms are often related to the skin and include

flushing (warmth and redness of the skin),
itching (often in the groin or armpits),
hives.
These symptoms are often accompanied by

a feeling of "impending doom,"
anxiety,
sometimes a rapid, irregular pulse.
Frequently following the above symptoms, throat and tongue swelling results in hoarseness, difficulty swallowing, and difficulty breathing.

Symptoms of rhinitis (hay fever) or asthma may occur, causing

a runny nose;
sneezing, and wheezing, which may worsen the breathing difficulty;
vomiting, diarrhea, and stomach cramps may develop.
About 25% of the time, the mediators flooding the bloodstream cause a generalized opening of capillaries (tiny blood vessels) which results in

a drop in blood pressure,
lightheadedness,
even loss of consciousness.


From:
http://www.medicinenet.com/script/main/mobileart.asp?articlekey=12953&page=6


Basically Benadryl only makes the person comfortable and hides the initial skin type reactions . It does not and can not have life saving capabilities.
It will not stop a reaction from progressing.
Steriods can be given prior to an infusion these will decrease the likelyhood of a reaction but not eliminate it . They aslo reduce the risk of a more severe reaction but again can't stop it from progressing .
Epinephrine is the first line of treatment for an allergic reaction and can stop it from progressing if given early enough .

DS had reactions of a scratchy throat on infusion number six.
He was already premeditated with Benadryl and Zyrtec
Infusion 7 he received Benadryl zrytec and iv solumedrol.
His reaction increased to throat , breathing issues and tongue swelling.

At that point his team of docs determined remicade was no longer safe for him to take.

He started with mild skin rashes after the first infusion but these were very delayed and he is a very allergic kid who gets lots of rashes even without remicade .
 
Thanks for the replies.
They did do Benadryl before starting the infusion & he is on 40 mg of prednisone. So with all of that I was thinking this should go well. :eek2:Now they did increase his dose from 5mg to 7.5mg this time.
He had no other symptoms, his BP & breathing were fine, not dizzy or nauseous, said he felt fine the whole time.
So by the time we got home the rash was totally gone, but should I be worried that something else can still happen?
Do all of these reactions only happen during the infusion? Can they happen days later?
 
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