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For the life of me I can't figure out how to post photos within a thread, but...

If you go to my profile page and look in the albums, I posted a before and after photo of DS. I was sorting through old photos this morning and came across these two and was just shocked. Since we see our kids every day, I think we don't always see the changes in them.

The before is from January when he had his resection (and he's only smiling because he had a therapy dog in his lap!) and the after is from August and three months into azathioprine.

Amazing.
 
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Wow! He looks amazing. I think sometimes we focus so much on the what next, what's happening now it is hard to see.
Handsome young man!
 
Wow!! He looks great!! It is quite a difference in a short time, amazing. And for those of us giving our babies medicine or surgeries...it is proof that they need it. Comforting to me as another helpless mom to crohns.
*I love his smile* Admirable!
 
Wow Mehita! He looks fab! How very happy and proud you must be of your handsome young man! :):):)

Dusty. :heart:
 
Blood with his BM tonight. Nausea, cramping, and as mentioned in another thread, odd rash on his forehead that's about two weeks old. Has had some solid BM's this month, but now it's back to mush. I should probably check for mouth ulcers. Regular labs due on Nov 4th.

Recap:
- started Aza in May
- therapeutic levels reached in June
- inflammation markers literally been up and down with each draw
- pred in Aug to knock down elevated July markers
- added IBS to the list in Aug
- finished pred two weeks ago

I do think the Aza has helped. Just hasn't helped enough. Frustrating.

Can't he just be a regular, healthy kid for more than two months at a time?
 
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Mehita, So sorry to hear! I know your feeling- with the Inflammation markers up and down... Has your GI talked about what's next after Aza? Its so frustrating when crohns won't let go. Some kids get on a med...and smooth sailing (well, as smooth as it can be)
 
At the visit in Aug, DS wasn't feeling great and we started all the prelim tests for Remicade, but then his labs all came back normal. His GI put the brakes on and sent us to child psych for anxiety.

If his labs come back elevated again in Nov, he'll be switched to Remicade. Slight chance we could up the Aza instead, but GI is very nervous about that since DS is an intermediate phenotype. I'm kicking myself for not just going straight to Remicade after his resection.

The other thing in the back of my mind... the boy simply doesn't poop well. He goes 2-3 times a day and poops for 30-60 min each time. And he really is pooping that whole time. It's very slow to come out, all mush, and usually a LOT. He's so little and skinny I seriously wonder where it comes from. If there is a day that he doesn't poop, it really exacerbates the problem. We did Miralax for 10 weeks, playing with doses, etc, but it didn't change anything besides add urgency.

Is there a medical condition for too much poop?? It's the massive BM's that bring the blood.

And the rash on his forehead is grossing me out. It looks like heat rash, but when you touch it the skin is hard, crispy and flaky. Yuck. We've been using the same lotion that my other son uses for eczema and it seems to be helping a little, but I still want to know what it is and what caused it. Just reread this paragraph... I can do poop and vomit, but bring on scaly skin and I'm running the other way. *LOL*

I haven't called the GI yet. Our IBD nurse is on maternity leave so I'm trying to only call when things are really, really urgent because I know they're overwhelmed right now. We can wait for the appt.
 
I finally called the nurse. Waiting for a call back. I think he might have an abscess and/or fistula to boot as well.
 
Geez! Mehita hope he gets some relief soon and the nurse calls back quickly. I absolutely despise waiting for the call back don't they know we are sitting on pins and needles just waiting for them.
 
Well, not sure what to think... GI thinks it's either an abscess, c diff, or just a lymph node/nodule kind of thing that will go away. I really don't think it's c diff. No fever, no D. The pus coming out his bottom is what's concerning. Yuck. Start Flagyl sometime after his next BM and go back in 10 days.

Frustrating.

And do you know how hard it is to find an open laboratory on the weekend? Sheesh. This is a large metro area. You'd think something would be open, but noooooo, need to go all the way to the hospital. And then they asked me to make an appt to drop off the c diff sample. Seriously? I don't know when he's going to poop next!

Sorry, just a bit crabby... and did I mention frustrated?

On the positive side, he's gained 5 pounds in two months. Height has plateaued though and we'll be "monitoring" that. He's been 4'10" since February. GI said it could be due to all the pred. Hate pred.
 
C diff came back negative, no surprise there.

Hepatic panel and CBC all normal.

CRP is back up to 24, normal is 0-8.

Abscess is getting worse. Hoping Flagyl kicks in soon.

Not happy :(
 
Gosh, I'm so sorry he doesn't seem to get a long break from this!!! :ymad: I hope the flagyl works quickly too!! :ghug:
 
Would it be totally crazy to just tell the GI enough is enough, let's just move on to Remicde? I'm supposed to call him with an update.

I know we could play around with Aza levels, but 1) even the GI is hesitant to do this with DS's intermediate phenotype and 2) we are so desperate for some long term relief. The only two things that have truly given relief have been the resection surgery and prednisone.

It's been six months on Aza, supposedly therapeutic for five of those months. Two flares, two rounds of pred, an abscess and possibly a fistula. Time to burn the bridge? Yes? No?
 
I don't know, took Sarah's 21 months to get into range on AZA. Three round of pred and an a bowel to bowel fistula.

It is also much harder to qualify for Remicade in Australia.
 
I don't know Mehita, What is your gut telling you? He deserves some relief and it doesn't seem like aza is quite getting the job done. Sending you a load of Hugs!
 
Not totally crazy
We changed DS for less .

He couldn't get off pred after we switch to Mtx due to vasculitis .
But for us it easier since Rheumo really wanted him on remicade due to the recurring vasculitis .
Similar issues with 6-mp for 8 months.
Loved remicade ( except for the recurring strep and skin rashes )
I can say DS most recent scope after remicade and humira was entirely normal
Every where on a macro and micro level only mild duodenitis after two years of always seeing damage somewhere
I credit remicade /humira with that healing .


What does your Gi have to say ?
I think that is key
 
Sending hugs your way! Not sure what to say but it rounds like might be time to look at something else such as remicade.
 
My gut is and always has been with Remicade. My brain said we needed to try Aza so we won't question ourselves later for skipping it. My heart says it can't take much more.

Can the abscess be causing the elevated CRP? I really, really really don't want to put him on steroids again. Tried EN back in the stricture days and it didn't go so well, so not sure that's an option.

Sigh.
 
It's so hard changing treatments. :( does his GI want to move ahead to remi? Or does he feel aza needs more time?

I don't know for certain but I think an abscess cud affect crp?? I've been told even a cold can affect crp so I wud imagine an abscess cud impact it as well.

:ghug:
 
We did 6 mos of aza...numbers kept going up. Ended up with abcsess. (And few other illnesses) Moved on the Remi (had reaction) and then Humira. It was only thing that gave relief for us too. 2 yrs 9 mos later...we're off to Mayo today. Even tho it looks like Cimzia isn't doing it either...he's better off than he was way back then when he was on aza. (At least that's how it seems to Brian and me and his Dad)
 
Oh Mehita I am so sorry for all you both are dealing with. Since the doc's first suggestion was Remicade, and that is what they are thinking now, I think I would wave the white flag. So many (O included) have such success on Remicade and it is supposedly very effective for peri annal disease (if that is what is going on). If you abandon Aza now, it is nor lost forever (like the biologics). I think I would give Remicade a try but I know how hard this decision must be after investing so much time and effort into Aza. :ghug:
 
Hi Mehita. I am sorry things are not good. My daugther was put on remicade due to perianal problems. So far so good. Hard decision but unfortunately we are the ones who have to make the final decision. I hope everything gets better soon.
 
Another long, sleepless night last night. The pus from his bottom kept him awake. Drainage, nausea and stomach aches today. He didn't go to school. While drainage is good, it sure is annoying. Any tips? Adding Cipro tonight. Not sure I understand why. Anyone?

We have an MRE scheduled for tomorrow. Going to be looking for the abscess, possibly a fistula, check out his anastomosis, and try to figure out what's causing his inflammation markers to be elevated.

GI thinks either the abscess is just causing havoc or he is flaring (again). He said there are several things on his labs that are in the normal range but are trending in the wrong direction. Ablumin, alkaline phos, etc, so this might well be a flare, though early. Then he mentioned the dreaded P word, so I brought up Remicade.

His thioprine labs are still pending and that will be a big factor on what to do next. This is where it all the "if"s come in. If his thioprine levels come back ok and there is only an abscess, then he wants to stick with Aza and play with dosages. If his thioprine levels come back as refractory, then we'll move to Remicade. If the MRE indicates a flare up, along with the abscess and especially if there is fistulizing plus his previous history of stricturing, then Remicade is a better option, but we could stick with Aza (no brainer there, no thanks!). GI is understandably concerned about burning through the meds too fast. Me too!

I also asked if DS is becoming pred dependent since it's only been two weeks since he got off of it. After a long pause... yes, it's very possible. Great.

I think my head might burst any second now. Ever feel like that?
 
We always seem to be in similar situations and they are rarely good ones. We are exploring treatment options as well and currently A is only on Pentasa. It definitely isn't enough! Remicade seems so scary but our kids just can't keep going on like this! Have you sought a second opinion regarding medications?
 
What a lot you have to think (and worry) about. :ghug:

Just something to keep in mind, my aunt used both imuran and remicade to induce remission. She also uses a very lose dose of a type of steroid (not pred nor entocort though). She was one of the very early patients on remicade so, perhaps, they were not aware of the antibody concerns but, after two years on both meds, she was taken off remicade (not because of any problems, just GI didn't think she needed it). She had a really tough time getting into remission (her crohns involves her rectum and large colon... maybe small as well??), it took a good two years or more. But, the imuran/remicade combo did get her into remission and even after dropping remi, she has stayed in remission - and it's been around 15 years now. While she does watch her diet, for the most part, she lives a normal crohns-free life - she eats out, she travels, etc. So, my point is that leaving the aza behind right now, does not mean that it'll never be an option again... you may just need to get him into a solid remission, once there for a while, then perhaps maintaining that status quo will be easier. :ghug:

I've never read that EN can help with fistulas, etc., however, perhaps if he is beginning to flare, it may help stop that... is there no way he would consider EEN??? Or EN as a supplement. I recently reposted an article showing that EN can increase remicade's success rate by a decent amount (posted it in the kids articles forum).

I know it's very easy to say but try to take it one step at a time now... it's so emotionally hard to deal with when you aren't even sure what you're fighting. :ghug: :ghug:
 
Major download ahead... horrible, awful, terrible day.

DS was determined to drink the contrast for the MRE today and convinced me to let him try. He absolutely HATES NG tubes so he was pretty motivated. His NG tube experience has been... less than ideal. He needed 800 cc and only managed 400 before hitting the wall. He was hysterical for the NG. Crying. Screaming. They had a really hard time getting it in place. I was watching the x-ray thingy and it just wasn't working. Even the dr was getting frustrated. Twenty minutes later it was "good enough" and they pumped in the 800cc. Yup, full dose because all the stuff he drank had expired or whatever it is barium does. During this whole thing he threw up at least four times. His shirt was soaked and I didn't think to bring any other clothes. The chills kicked in and he couldn't stop shaking even with all the warm blankets.

After getting pumped full, he could hardly move. He was in the zone. No communication with planet earth. Totally checked out. They had to wheelchair him the the MRE. He did well until the glucagon. More vomiting. So much so they were concerned he might not have enough left. I've never prayed so hard in my life. Then he had to use the bathroom for diarrhea. There went another five gallons. All the while we also needed to take breaks to wipe the drainage from his bottom.

We were at the hospital for five hours. He left covered in vomit, dehydrated, nauseous, and a thousand times more miserable than when we got there. I seriously thought about having him admitted. And my little guy came home to an empty house. I thought we'd be home by then and didn't arrange for a babysitter.

Home now and he's a mess. Totally nauseous, wiped out. I'm trying to get him to drink to flush out some of the crap, but he can't even tolerate water.

I kept my brave mom face on all day, but I'm about to burst. The Hubster won't be home for another hour. Hate, hate, hate this stupid disease. To top it off, the MRE is only going to bring bad news.

Okay, done downloading :(
 
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Oh Mehita, I really am so sorry the two of you had such a horrible day. :( It so unfair what these kids have to go through and what we have to watch them struggle with. :ghug: :ghug: Praying the nausea goes away soon and he has an easy night. :ghug: :ghug:
 
Our MRE experience was similar, minus the NG tube. A always vomits with that stuff. Poor girl puked, peed, and pooped herself in the machine. I forgot a change of clothes as well. Our kids are tough though. Tougher than we are most times. Hope your boy feels better soon!
 
Surprisingly, I just got a call from the GI. I'm really starting to like this guy. He said he heard DS had a tough day... um, yeah.

MRE showed extensive inflammation in the small intestine, at the ileum, and at his anastomosis site. And get this... no abscess! He didn't have all the slides but the radiologist told him he didn't see an abscess. Tomorrow they are going to get together and poor over the slides.

So what's with all the drainage? Possibly rectal inflammation or some sort of infection that we haven't tested for yet. More stool samples tomorrow and one more c diff test just to be sure.

He gave three treatment options. 1) wait on Aza tests, then pred and Aza 2) pred and methotrexate or 3) Remicade and no pred. I said I know what my gut is telling me, but I want to hear what yours is saying first. He hemmed and hawed about mtx, but then ultimately said Remicade.

First Remicade infusion is this Friday. Is it totally wrong to be... happy... right now?
 
Woo hoo!!!
So glad you guys have a plan forward
And no it's not wrong to want your child to have a little peace and happiness with this disease .
I hope remicade works quickly and for a very long time for your child .
DS cheers anytime I tell him someone is starting remicade.
His words " they are really going to like it"

Good luck
 
Only an IBD mom could be happy! My daughter also loves Remicade. She's flaring right now (a virus and then a sinus infection) but she still says all the time "Mom, I LOVE Remicade!" She's a different kid on it!
Your poor boy deserves some relief, I hope Remicade is your miracle drug!
 
So sorry your poor boy is having such a hard time! Really hope the Remicade works quickly for him.
 
Mehita,
Sorry he had such a rough time, so glad you guys have a plan. Will keep my fingers triple crossed that the remicade works for him !
 
Wishing your DS success with Remicade on Friday. H has been on it a year now. Knock wood, he has felt great since the day after the first infusion. He is living life well. He just got his black belt. He did swim team this summer. He ran cross country this fall for school, He put on 30+ pounds and started growing again.:dusty:
I felt awful for what your young man had to endure this weekfor his tests. :ghug: Really hope the Remicade makes it all worth it. Hoping a year from now he feels great and is recounting what a great year it has been enjoying life as a teen.:goodluck:
 
Oh Mehita! I have tears in my eyes reading this.

Are you crazy for being happy that there is some promise that your son might get relief? NO WAY!

We are Remi lovers here as well. I can not believe my daughter is the same kid I brought to the hospital almost two years ago.

I am SO hoping that this is exactly what he needs.

I hope you are able to get some rest and take care of yourself also.

Welcome to the IV league!
 
Poor lad with his MRE experience :(, but at least you have got some answers and hopefully solutions from it!

It is such a relief to have answers! Definitely should be happy!! :dance:

:ghug::ghug:
 
...and we've been admitted and are here for the weekend. I knew I should have packed a toothbrush!

I was right.

We were supposed to be here for DS's first Remicade treatment. The infusion centers were full so they admitted him to a room "under observation". The GI finally came around wondering why we hadn't started yet and it was because we were waiting for him to check out DS's lump on his bottom. So he checks, his eyes pop out and says it's an abscess. A big abscess. Great. Now we're waiting to go down to ultrasound to see if it's an abscess for sure, if it's filled with anything (I'll take a gander here and say PUS!), or if maybe we lucked out and it's just inflamed tissue under the skin. Either way, it postpones Remicade.

After the ultrasound they're starting IV Zosyn and Vancomycin and keeping him overnight.

Surgery is going to stop by also and, based on the ultrasound, determine if he needs it drained. Not exactly what we had planned for our weekend, but we'll just go with it.

Supposedly, he's still getting Remicade soon. Maybe not until 3am at the rate we're going, but still getting it.

My dear, dear DS said in front of three doctors and two nurses, "You nailed it, Mom." Love this kid.
 
Things sure can change quickly around here. Hubby has had a couple of those, turns out I'm a pretty good nurse and the surgeon complimented me on my "packing" the abscess after surgery. Lucky (knock on wood, etc.) that we have not had that with Jack.
Hope it all gets taken care of quickly and he gets relief.
 
Confirmed abscess and fistula draining thru rectum. Surgery said as long as it's draining, they're happy. GI disagrees and says it's not draining fast enough. The battle of the egos. GI hinted that we might be here for 7 days for the antibiotic treatment. Fun.

Bad reaction to Vanco. Stopped that and switched to Clindomycin. Still no Remicade.

How did we go from a Remi appt to a seven day stay? My head is spinning.
 
I have to sit down because my head is spinning.

Poor kid. I saw your other thread so is home IV still an option??
 
Your poor boy just can't get a break!
You both will be in my thoughts. Hope the GI and surgeon can agree and you guys get to g home soon!
 
OMG, Mehita, I can't believe how quickly things have changed!!! I am glad that they've admitted him and that they certainly seem to be on top of all possible problems! But I'm sure your head is spinning... I'm so sorry you both have ended up at this point. :(

I hope he's feeling alright though... he seems to be such a trooper (and I love his comment about you!!)! Use his strength! I know when I was in the hospital with Stephen, it was seeing him deal with it all so calmly that very often gave me the strength I needed! :ghug:
 
Wow, how stressful. At least something is getting done. Hope the antibiotics start to help soon. I agree with your GI, when Andrew had his abscess they left him far too long on oral antibiotics that were doing nothing, ended up having a lot of tissue removed. Best to have surgery to drain it earlier, although IV antibiotics will probably help a lot more than by mouth.
 
Good grief Mehita! :ghug::ghug::ghug:

I was so relieved that Remicade was the final decision. From reading your posts my feeling was there had been enough water under the bridge with Aza and it was time to move on, also the dependence on Pred needed to stopped if possible.

The problem with Aza and Pred is they can also mask symptoms of infection and therefore the situation for some can be quite serious before anyone realises. This certainly was the case for Matt.

Once they get the infection under control then they will be able to move with the Remi. Biologics are generally contraindicated when there is a severe infection present and abscesses normally fall into the category of severe infection. My general rule of thumb when it comes to surgeon versus GI is that surgeons are very good at what they do, cut and close, but they are not in the habit of treating chronic conditions. I know this isn't always the case but I would tend to listen to the GI regarding ongoing treatment of the Crohn's.

I so hope your lad is starting to improve Mehita, bless him. Sending tons of luck and well wishes your way. :heart:

:hang: Mum, you are doing fab!

Dusty. xxx
 
Blood cultures for sepsis are coming back negative. What a scare!

Still on IV abx. Will decide Mon morning if they're taking care of the abscess. If yes, then they send us home with a PICC line and we do abx at home. If no, then surgery and we stay here awhile longer. I was ready to go home yesterday. Possibly keep us here all week just for abx too, especially if they try Vanco again.

It's amazing what a couple bags of fluids will do for a boy. He's back to his normal self aside from minor pain with the abscess. Tylenol helps with that.

GI has already scheduled his next Remicade appt and we're looking forward to it.

What a week. I'm tired.

Thanks for all your comments and support. It really means a lot!
 
Phew! Thank goodness he isn't septic and it so good to hear that he is picking up. :)

I hope things continue to settle for him Mehita and he will be allowed home. Good luck!

Dusty. xxx
 
Why must everything be such an adventure??? DS got his PICC placed yesterday and we were all ready to go home. Discharge papers in hand, bags packed, ready, set...LOCKDOWN.

The nurse said there was a crazy guy in the lobby with a knife yelling and screaming. Said it happens all the time and offered us apple juice. We probably should have been scared or something. Instead we took our apple juices and turned cartoons back on.

Eventually we did get home and met with the home services nurse. I got trained in on how to administer the abx and so far it's going well. Next Remicade infusion is the 15th.

I'd like some plain, boring, nothingness now, thankyouverymuch.
 
As shellshocked as you are "there is a threatening, knife wielding man in the lobby right now, would you like some apple juice?" probably didn't phase you! I on the hand just had coffee come out my nose when I read that phrase!

So glad to hear y'all are home! Hoping for some plain, boring nothingness for a long time for you!
 
Me too Clash,
Oh crazy man, we'll just have apple juice and watch Spongebob :eek2:
Glad you are home. Fingers crossed for the 15th and Remi.

(I've decided I'm done with 2013! Bring on 2014 and some healthy kids!)
 
Ya that's pretty high, bein new here im a bit reserved on what to say. I do know I can say I tested out once with a crp of 76 so yes that is high. I have been on and off both 6mp and remicade. And I can say im sry someone so young is going thru that ive been there.
 
Went through the same thing with my son a few years ago, the abx with PICC line healed the fistula/abscess and Remicade kept it away. Best of luck for a quick recovery!
 
Mehita, When it rains it pours, On top of everything you guys are going thru, you have to worry about a crazy man. I hope that remicade works well and gives you a break.
 
Well, now I know the appropriate response to the awkward social situation of a knife wielding crazy man.... offer apple juice. Makes perfect sense!

Hoping you get a long stretch of plain, boring, nothingness!!

Fingers crossed for the Remi on the 15th.

((((hugs))))))
 
Mehita,
Have been away for a few days just got back. Sorry to hear about the craziness! Sending healing prayers!!!!
 
Plain boring nothingness sounds amazing! Everything crossed for that.

Really hope everything settles down now :ghug: xxx
 
Jenn - How long was your son on the abx? How did you know the abscess was gone? I think in another thread you mentioned 6 weeks?
 
Yeah, sorry, split the threads! He was on them 6 weeks, he had a followup MRI to determine the fistula was closed internally, was smaller externally within a few days. Hasn't had another so far, since starting biologics.
 
Mehita!!! I caught up on your thread from last few days of October to now. OH MY GOODNESS!! You and your son have been thru so much!!!! I'm so sorry. This awful awful crohns!!!
 
Mehita said:
Waiting until summer was because his GI said he doesn't like to go in too soon and poke around in case things haven't completely healed yet, so he typically waits 6 months before scoping and imaging.
Click to expand...

that is true my doc did the same thing after my resection. Has he had his crp ckd recently that's a pretty simplem one to do and see if inflammation is up
 
Day 14 of IV antibiotics.
GI visit this AM.
Second Remicade infusion this PM.
PICC out today??
Fingers, toes, and elbows crossed, please!

Not sure why I'm a nervous mess right now. I'm packing a toothbrush today. If I see any doctor, nurse, or staff person with a first, middle or last name of Murphy, I'm not responsible for my actions.
 
:rof::rof: I can see it now...Hospital on lock down due to a toothbrush wielding crazy crohns mom:rof::rof: You better get the ball vice from Mary...much more effective.

Good Luck!
 
:rof::rof::rof: Oh, goodness!

Mostly good things today. The abscess is still there but has shrunk from prune sized to pebble sized. The GI wants it gone though, but knows the IV abx schedule is brutal, so we're switching to oral Augmenten for 14 days and stopping the IV abx. If oral abx doesn't finish it off, then it's back to IV abx. Confused yet? We're keeping the PICC for another week, just in case. That was DS's choice. I'm going to go out on a limb here and say PICC lines and volleyball are a bad mix, so no gym class for awhile still.

Also tapering to 25mg of Azathioprine every other day this week and then dropping it.

One hour left on his Remicade infusion. Very uneventful, thank goodness. Any wagers on how many more levels of Candy Crush I can get through before he's done?

Turns out this is an adult cancer care center and not the ideal situation for kids. Next time we're going to the children's hospital instead. A little too... depressing... here. Just want to walk around and hug everyone. They don't get many kids here so they sure are enjoying him!
 
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I think that was the most uneventful GI appt we've had in years!

The abscess is pretty much gone. DS says he can still feel it, but it's tiny. The GI couldn't feel it at all and was quite happy. We need to finish off the last week of Augmenten and then he's done. Stopped Azathioprine over the weekend. PICC line came out today. CRP has been in the normal range for the last three weeks. Still a touch of anemia, but GI said it's not due to lack of iron. More likely a residual from the inflammation earlier this month. Got approved for Remistart and 3rd dose of Remicade is December 13th.

I actually feel... calm. Even a little hopeful. It's nice!
 
That's so great that all is going well!!! I hope the remicade keeps the good news and calmness all around for a long, long time! :D
 
I've seen this thread for awhile and just now sat down to read it all. It sounds like our kids have had some very similar experiences starting w/strictures, resection, Imuran and now constipation for us.

We're heading to your neck of the woods in two weeks for a consultation w/Mayo.

LMK if you want to meet up!
 
"Mom, I decided that starting today I'm going to be in remission forever."

Ok, then. Sounds good to me.
 
We're at the hospital for infusion #3. The nurse said that #3 and 4 are when reactions tend to happen, if they happen. I didn't know that. Good thing they're not checking MY pulse and blood pressure right now. DS said his radio alarm woke him up this morning with the song, "Best Day of Your Life" so I should stop worrying. Apparently, it was a sign.

They are much more attentive at the children's hospital here than the adult cancer center from last time. The nurse comes in every 15 minutes and they take vitals every time. Last time, we pretty much sat in a room by ourselves for four hours. Definitely coming here for all future visits! And they just stopped by to see if we wanted slushies. Nice. :)

And there was this sweet woman in the waiting room who's older teen son has cancer and was handing out handmade ornaments to all the kids. It made me count my blessings.

Couple of questions...

We had labs run when we got here and all is good except liver numbers. AST is 53 (0-35) and ALT is 55 (0-50). Both were in the 30's a month ago. The only other thing that caught my attention was Alka Phos jumped up significantly from 170 a month ago to 332 today (130-530). The Alka Phos can just be indicating a pending growth spurt, right? What about the liver numbers? Same thing?

CRP continues to be normal. Woohoo! That's like a record for us!

So, thoughts on labs?
 
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I just googled it and I don't want to alarm you but you definitely need to discuss that with the doctor. All three of those lab studies elevating can mean the remicade is adversely affecting the liver. Here is the link:

http://livertox.nih.gov/Infliximab.htm

Remember though I am not a doctor so you need to discuss this with your doctor.
 
Those liver numbers are still okay (according to our GI). A's AST was 41 (12-32) and her ALT was 38 (8-24) with only Pentasa. He thought those numbers were fine although I would have preferred to have them within the normal limits set by the lab. He said they don't start to worry until they become double the normal limits and even then they just monitor more closely. We had to stop 6-mp when A's AST was 92 and her ALT was 327 (just for a comparison).
 

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