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First Remicade tomorrow/MRI results!

I need all the good vibes, warm thoughts, prayers and fingers crossed and whatever you can give. Kasia has her first Remicade tomorrow morning with no breakfast and no food during the infusion (German thing I guess). I am very worried and scared and I think she is too. I sent her to her friend to make cupcakes for Xmas market but I know she thinks about it a lot. I will let you know tomorrow evening how it went!

I guess I will have ANOTHER glass of wine and will stop reading scary stuff about Remicade.

There is also a piece of good news. I got Kasia's MRI results today and as much as I cannot figure out the CD imagine, the description says that the CD hasn't spread out anywhere else other than the "old" terminal ileum. I guess that's good, right?
 
Ya! Good news about the MRI.

Prays coming your way for a good infusion!
I hope she enjoys the cookies, if she gets any.
 
Good luck with the infusion! Don't sweat it, reactions are very rare and the staff knows what to do if there is one. What you should do is keep an eye out for any "slow" reaction. Keep vigilant for unusual itching, rash, high fever, dizziness... pretty much anything. Take notes, with dates. Call the doc if you get worried even a little, and read your little notebook to him/her. :)
 
You will be in my thoughts.
Bring food just in case . Blood sugar tends to drop so DS eats constantly during his.
I will bring something but they specifically told me not to. Strange, isn't it? I know it is a small thing to worry about but I know that those bavarian butter pretzels are comfort food for Kasia and it makes me mad she has to feel hungry during this stressful time...oh well...I am Polish - it's all about food:ylol:!
 
I know you didn't ask, but I have to mention, I can't eat any Polish food at all when I'm flaring or I'd be much, much worse off. It's all the fat, and grease, and butter... Have you talked to a dietician about how dietary modifications might help Kasia have a better outcome?
 
Bavarian Butter Pretzels, Oh my gosh YUM! Sending you loads of support and prayers and whatever else you need. (I could send you a case of wine also) :dog:
 
We are all vegetarians and very healthy eaters, the only polish food we eat is pierogi with cheese. It is more about the ideology of eating - you mustn't ever have empty stomach, if you think you are done with your food, I will ask you again "what would you like to eat?". Quite a stereotype but about my own people so I guess I can :).
 
My DD had a few Remicade infusions, the reading material can totally freak you out. Rowan never had any side effects from her infusions unfortunately it didn't keep her in remission. It was imaboveitall that said it best....these drugs can be scary. When they work, these "scary" drugs start to look more like baskets of kittens. I agree I hope it really helps get to remission. Best of luck!
 
We are all vegetarians and very healthy eaters, the only polish food we eat is pierogi with cheese. It is more about the ideology of eating - you mustn't ever have empty stomach, if you think you are done with your food, I will ask you again "what would you like to eat?". Quite a stereotype but about my own people so I guess I can :).
OK I feel like I'm picking on you here, but some vegetarian diets can be pretty harsh on some Crohn's sufferers. Some Crohn's sufferers do great with fiber, for example, and for others the opposite is true. I'm not sure of the ratio there, honestly. I know that a vegetarian diet that was nutritious and also Crohn's friendly would be nearly impossible to pull off for me and my daughter. I really suggest talking to a dietician if you can get to one, or do as much research as you can online if not. Lots of us really believe that diet is at least as important as medication for staying healthy with this disease. It's HUGE for me.
 
OK I feel like I'm picking on you here, but some vegetarian diets can be pretty harsh on some Crohn's sufferers. Some Crohn's sufferers do great with fiber, for example, and for others the opposite is true. I'm not sure of the ratio there, honestly. I know that a vegetarian diet that was nutritious and also Crohn's friendly would be nearly impossible to pull off for me and my daughter. I really suggest talking to a dietician if you can get to one, or do as much research as you can online if not. Lots of us really believe that diet is at least as important as medication for staying healthy with this disease. It's HUGE for me.
No, you are not picking on me at all. All info is appreciated. We have seen a dietician and after looking at what Kasia eats, she said we were fine. Except for apples and Indian food to which she is somewhat allergic (slight diarrhea) , she seems to have no problems with other food. Anyway...Kasia is "strange" because she never had any "belly" problems (diagnosed with CD 5 years ago), no pain, no loose or frequent stool, no blood in stool - nothing! She "only" wasn't growing and had a low fever for 6 months - that's why it was so difficult to diagnose. The docs here say that if she reacts badly to some food (not feeling well, stomach pains or toilet issues), we should stop but otherwise no restrictions right now. She feels and eats the best when are in Italy (only two hours away) - all the pastas and pizzas she gobbles like crazy with no stomach problems whatsoever. I guess I will listen to what her body tells us...whether or not I am right...no idea...
 
She sounds a lot like my son. We only discovered CD with his fistula. He did great on Remicade while it lasted and we saw a difference in just a few days, he was back to normal-kid energy. Best of luck to you!
 

Tesscorm

Moderator
Staff member
Good luck tomorrow! I will be thinking of you! I don't have experience with remicade but have read of many success stories here! Sending lots of hugs! :ghug:
 
Good luck with the infusion! Takes games, laptop, something to entertain you both. Hopefully the time will fly by and you'll be off for a huge lunch before you know it!
 

crohnsinct

Well-known member
Forgot to mention...make sure she drinks lots of water before. THe more hydrated she is the easier the IV insertion will be and the easier any blood draws for testing will go. Also, when thirsty you sometimes feel hungry but it isn't hunger at all it is thirst...so have her stay hydrated before or if they nixed water as close to the stop point as possible.
 

Crohn's Mom

Moderator
Aniuko ~ my husbands family is Polish so I get you there ! :)
I am not, but they have deemed me an honorary polock and say that I cook their favorites better than they did now ! :medal1: LOL

Good luck with the infusion, I hope it is all uneventful for her ! Bring along the pretzel for a special treat after :heart:
 
Sending good vibes your way!! Hoping everything is easy peasy for your sweetie and she gets great results!!
 
Thanks guys for all the vibes and prayers! The infusion went very well without any complication. They told us to observe her for the next 5-7 days for any flu like or unusual symptoms. I am so relieved it is over...for the next two weeks. She was very brave and much calmer than me. After the infusion she had a lot of energy and managed to go to our little American Xmas market....good sign I guess!

Thanks again for all the support! It would be much harder without you guys!
 
So glad to hear it went well! The first infusion is definitely the hardest--next time will be a piece of cake!
 
Yay!!! I'm so glad it went well and she is feeling good. Hope she has lots of energy. I'll let Jack know he was asking me last night if she had her infusion yet. :dance::yoshijumpjoy:
 
Jmrogers4 and Aniuko I think it is awesome that ya'll have set up the E-penpal system for Jack and Kasia! How great that they can share their experiences, CD related and beyond! Part of what makes this forum so awesome, I think!
 
my son has had two sessions so far. They gave him medicine to make him sleepy so he was out the whole 4 hrs. You just sit there so I suggest bringing something to do. You guys will be fine :)
 
:goodluck::goodluck::goodluck::goodluck::goodluck::panda-wave-t::panda-wave-t:Glad to hear it went well!! (My daughter was having fun the smilies)
 

DustyKat

Super Moderator
There is also a piece of good news. I got Kasia's MRI results today and as much as I cannot figure out the CD imagine, the description says that the CD hasn't spread out anywhere else other than the "old" terminal ileum. I guess that's good, right?
I'm sorry I am late to this Aniuko! :hug:

It is so fab to hear that all has gone well, YAY! What a relief for you all. :)

The MRI result is indeed good...the disease has been contained! :)

Dusty. xxx
 
Just wanted to offer some support...glad to hear that the infusion went well and hope that it does the trick for you!
 
I am so glad it went well for you guys!

After my infusion I had the flu like symptoms- Gross! I took Tylenol for 5 days after my following infusions and I have not had that happen again.

Oh, and my nurse always gives me a snack during mine.


Lauren
 
Thank you guys! You are the greatest support group ever! So it is 4th day after the first infusion and Kasia is feeling great! As far as CD - no idea if it works or not since she never had "normal" symptoms...I guess we will see at her next blood test...

And the first skiing this season is this weekend. Almost afraid to say it but life might actually be somewhat good for us...right now...knock on wood!

Thanks again,

Ania
 
Glad she is still feeling great and looking forward to skiing this weekend. We are still a ways off at our closest ski resort as they have about an inch of snow, it has been really warm here. Jack will be so jealous. I know he will be emailing her probably tonight, we've been crazy busy and I know he has been planning on emailing her back. He showed me the picture she sent of herself. She is a doll.
 
Jealous about the skiing here too! None of the East Coast slopes are open yet. We just checked yesterday hoping to sneak some in over Christmas. Glad she is feeling good.
 
So glad she's doing better.

In Michigan USA our slopes open early only to close down 2 wks later, it got to 60 degrees here. They should be back open soon.
 

DustyKat

Super Moderator
Good luck! I hope you get to ski and all goes well! :goodluck:

YAY for normal things! :):):)

Dusty. xxx
 
What the hell...this is all I can say! After our October colonoscopy and gastroscopy visit at the hospital and changing Kasia's medicine from MTX to MTX+Remicade we received THE LETTER! The letter from the hospital describes everything that was done and was found while the child was at the hospital and that the docs might have failed to tell you. Our linguistically skillful German doctors wrote in the letter that my daughter "may or may not have Crohn's" and that the biopsy samples are not enough prove that the patient "may or may not have Crohn's". WHAT? I thought that the biopsy results are pretty much accurate and that they can tell for sure what it is (the biopsy results from 2009 showed that she has Crohn's for 100%). Or am I just ignorant and have to learn more?

I also went to a osteopath today with Kasia...kind of skeptical I must say and he said he doesn't think she has Crohn's. When I asked why he thinks so, he said that her symptoms are not Cronh's symptoms (because she doesn't have diarrhea and/or stomach pain). Here I think he just doesn't have a knowledge, right? Both of my kids were told not eat dairy products for 3 months (my son has dust mites allergies) and wait for the results. I thought I would give it a try since it is not invasive at all.

But this reoccurring thing about Kasia not having Crohn? Strange?

I hate being confused....I will hold on to our plan on save Remicade infusion on Friday, will have some wine and hope not to go nuts!

Ania
 

crohnsinct

Well-known member
Bizarre! How do they explain her feeling better on Remicade? She does feel better right? I can't see the old posts on the computer I am on.
 
Oh Aniuko, that is so frustrating. :ybatty: Not sure about the conflicting reports, all I can say is it seems no child has the same symptoms. Jack never really had diarrhea, he did have stomach pains. I think some kids have only been diagnosed due to lack of growth/failure to thrive. I'm sure others will be along shortly who know more than I do and I'm sure there is a reason for the conflicting reports.:beerchug: (couldn't find one with a glass of wine but you get the idea)
 
Oh. My.

What a disaster!

I can't imagine what you are going through.

Izz had diarrhea with no pain, and plenty of children here had EIM's with little to no GI symptoms. Not to say that I am hoping she has Crohns BUT I can't agree with the logic.

No advice, just (((HUGS))).
 

my little penguin

Moderator
Staff member
Ok here is my take---
Just mommy opinion but...
If the biopsies did not show granulomas then some docs are hesistant to say 100% crohn's.
DS originally had a"working" dx of crohn's- Gi never told us that.
After we had two more opinions his dx went from "working" to crohn's .
Same symptoms but since more agreed then it was "ok".
DS also does not have D he has C instead.
Plus lots of other stuff ( EIM etc...)
My point being I have yet to see to kids with the same symptoms.

If your doc prescribed remicade - I would not worry what the letter said - they are treating her Ibd.
Hope the new combo helps.
 
You poor thing - how confusing. I wouldn't listen to the chiropractor - Andrew has never had D or weight loss or blood. All Andrew had was a sore tummy and now he doesn't even have that. Try not to stress too much, just keep looking to the blood tests to see if the Remicade is working. Remicade is not something they would use for no reason.
 
Hi Aniuko,
Violet's biopsies from scopes are always neg. No granulomatous changes whatsoever.
Yet she for sure has Crohn's. Read her thread if you want to feel not alone as far as a kid with NO GUT SYMPTOMS and perfect stools but who is nonetheless very sick :eek2:

V too shall very likely be starting Remicade after much resistance on my part so I am with you there, too. It took a lot of mental gyration to get me to accept that she needs such a drug, and YES the girls on here helped a LOT with that. I re-read the responses of the ones on Remicade as needed for my sanity, nowadays that is several times per day :blush: yes I am consumed by it all...

Hugs and understanding, dear, from one who knows well both the confusion when symptoms don't align and also the fear aspect.
 
Thanks a lot for all the responses. I know that there is no way she is completely healthy - I saw her calprotectine results, blood results and colonoscopy pictures - the disease IS there! And I knew even before going to the osteopath that whatever he says I will skeptical about - I am not a huge believer in natural medicine in serious diseases and how many cases of CD has he seen? It was just very weird and confusing that one: within two days I found out that my child "may or may not have Crohn" and two: that nobody even talked to us about the confusion in diagnosis.

I don't supposed that the docs (and the woman who treats Kasia is the European IBD guru and works very closely with Johns Hopkins hospital) wouldn't just give her Remicade if they didn't know that this is IBD. And she does feel better, a lot of energy and pink cheeks - finally. She skied three days in a row and was never a bit tired. so it does work!

Should I dig in and ask more questions about whether or not this is Crohn's or should I just drop it now?

have a great day! We are snowed in and school is 2 hours delayed, yeahhhhh!

Ania
 
Location
,
Aniuko i don't think they would give her remicade if they weren't sure.

Is there any chance you can get a another opinion.

:hug:
 

DustyKat

Super Moderator
If it were me I would pursue the reason as to why they think the diagnosis of Crohn's is questionable based on the biopsies and what they think based on the visual and clinical results.

As mlp and imaboveitall have said, a lack of granuloma's can result in a negative diagnosis from pathology. Here is part of an old post of mine...

Back when Matt had his colonscopy and biopsies, the path report came back saying something like...has the appearance of Crohn's but doesn't have the granulomas present used to positively diagnose Crohn's.

So finally received Matt's path report from his surgery, I'm reading cobblestone appearance, skip area, abscess, crypt abscess, ileum to ileum fistula, chronic fistula, NO granulomas...

(a 200mm chunk of bowel to poke and prod to the nth degree and)...

Summary...NO CONVINCING EVIDENCE OF CROHNS DISEASE!!!
...although granuloma's may only be present in 40-50% of sufferers (don't quote me on those figures!) it still seems to be the gold standard when getting a definitive diagnosis via pathology.
The GI diagnosed my son on the spot following his scope and has never veered from that diagnosis. When we had the follow up with the surgeon I specifically asked about the findings and he said that unless pathology can tick all the boxes they don't like to label people. I asked him if my son has Crohn's based on what the pathology stated compared to what he saw and he said..."Oh he definitely has Crohn's". I didn't need his verification because I was in no doubt he had it but I was curious for to hear the surgeons explanation.

Perhaps this is what is lacking with your daughter, granuloma's??

Dusty. xxx
 
Thanks guys...

upsetmom, there is nobody who would want to question my doc's opinion :) but as Dusty wrote it is probably the granuloma's case...She has her second Remicade on Friday and we will definitely ask. I truly believe that they wouldn't treat her for Crohn's thinking it may not be one.

Thanks for all the support!

One more question...is there someone that had allergic reaction to Remicade after or during the second (or third or so forth) infusion? Or is it the case that if you didn't have it the first time, you are fine?

Thanks a lot,

Ania
 

DustyKat

Super Moderator
Although we have no experience with Remicade at our end I do recall reading on the forum that some do suffer with an allergic reaction after having no issues with the first dose.

I am sure others will be along with first hand experience and advice. :)

Dusty. xxx
 

crohnsinct

Well-known member
Yes you can have an allergic reaction after. I think some here went to 7 or 8 doses and had an allergic reaction. Jmkinley is one of those who have a son with a later reaction.
 
Just wanted to let you all know that Kasia had her second infusion yesterday and it went really well. We additionally got blood results from the two weeks ago (before the first Remicade) and from yesterday. EVERYTHING is much better than two weeks ago. It is hard to believe that her results got better so fast! B12 is higher so I guess I will stop feeding her with this one! CRP less then 0.10!! I know we have still a long way to go and possibly a lot of bumps on the way this makes me happy today!
 
I've been reading your story closely as we start Remicadee next week. So glad it went well for you!!!!
 
Ania,
Yay! So glad she is feeling great and able to enjoy skiing. Cute picture of Kasia. So do you go again in 2 weeks? or do you have a longer wait this time?
 
That is my understanding and I believe the goal is every 6-8 weeks. Hope it works for a long time.
No skiing here yet. Jack just had his board tuned up and is all ready and waiting for the snow. We have a resort open but it is 3-4 hours away while our 30 minute away resort only has about 9" currently. It is supposed to snow tomorrow though.
 
Oooh, skiing - haven't been skiing since I was 12. My mom always loved it and took me to Austria and Canada to ski, but my husband has no interest in it so haven't been at all. Have to say our one holiday a year needs to be sunny since we live in Scotland (only beaten by Norway for the most wet days a year!)
 

my little penguin

Moderator
Staff member
The first infusions are induction series and are close together .
You get one infusion say dec 1
Then two weeks later dec 14
Then four weeks later jan 14
Then every 6 -8 weeks after that

Enjoy the skiing
 
Location
,
I remember my first attempt at skiing....i went 3 meters fell over and i quit ..:lol: ..sat in the cafeteria the rest of the day
 
Ania,
Your thinking of snow for us worked :thumleft: our ski resort is opening on Friday! Jack is excited to try out his new snowboard since he finally out grew his old one.
 
Ania,
Your thinking of snow for us worked :thumleft: our ski resort is opening on Friday! Jack is excited to try out his new snowboard since he finally out grew his old one.
Great! And the fact that he outgrew his board - this is the best news! Hope you have a great first day! Kasia will have her board lesson after Christmas and I bet she will share with Jack. Ania
 
Hello all! Just to update...tomorrow Remicade number 3! Our whole family has been fighting a nasty virus (sore throat, terrible cough and muscle pain) and I think Kasia is the winner! My son and I ended up on antibiotics and she is fine. She didn't get her MTX for the last two weeks - our doctor's recommendation (not Gastro, just general paediatrician). I hope this is ok. She is coughing just a tiny little bit in the morning but otherwise is fine. Our doctor noticed a bit enlarged neck - she thinks it was either lymph notes during the virus or a slight problem with her thyroid. We are supposed to ask our gastroenterologist tomorrow, do the ultrasound and check her blood - I will keep my fingers crossed this is nothing! I will write after the infusion.

Ania
 
Remicade number 3 went well and she is feeling. The blood results are super! Her what we thought was her thyroid problem turned to be...nothing. All is well according her her doctor in Munich and according to the blood tests. Her next Remicade is in 8 weeks! I guess it is good news but isn't it unusual to have such a long break?

Ania
 

Tesscorm

Moderator
Staff member
Glad all went well!!

While I don't have experience with remicade, I believe the loading dosages are closer together (3 doses at closer intervals, perhaps 2 weeks???) but then the maintenance doses start at 8 week intervals and can be moved to shorter periods if necessary.
 
Glad blood tests were good. Yes that is my understanding with remicade that maintenance infusions are ideally done every 8 weeks. Jack says he got an email from her yesterday, sounds like she is enjoying her snowboarding lessons. He is going boarding after school today they had a huge amount of new snow yesterday
 
Yes the maintenance doses are at 8 weeks unless for some reason they can't go that long. Then they either increase dose or move to every 6 weeks. I hope that the good results continue!!

Skiing and snowboarding, Ryan would be SO jealous. He has wanted to live near a slope since his first lesson at 5 years old! Just loves it and we don't get to go very often. At 5, we got him a private lesson. After 20 minutes with the instructor, he pointed up to a black diamond and said "I want to go up there". The instructor bent down and said "I am impressed with your enthusiasm, but I haven't taught you how to stop yet". Ryan looked at him seriously and said "But why would I want to stop?" :eek::eek:

We knew right then we had created a monster!!

Have some fun for us!! Alabama has NO SNOW!
 
Ryan looked at him seriously and said "But why would I want to stop?" :eek::eek:

We knew right then we had created a monster!!

Have some fun for us!! Alabama has NO SNOW!
:rof: Sounds like my younger one, knew we were in big trouble after his first 1/2 hour lesson at 3 he went of a jump/ledge turned around backwards on his skis. waved at me turned back around and skied the rest of the way down the hill... Now at 11 his favorite runs look like this images.jpg he has been on the extreme team the last few years, the faster, the more bumps and trees the happier he is
 
glad to hear the labs were great and may it continue...well, forever! we did every 8 w weeks post loadding dose on remi, shortened to 6. her gi has a couple of kiddos going every other week!
 

DustyKat

Super Moderator
Thanks for the fab update Aniuko! :):):)

Sooooo good to hear that all is going wonderfully well. May it keep on keeping on!

Dusty. :heart:
 
Just an update on Kasia. She had her next Remicade on Friday. Everything went well, the next day she skied the whole day long! Blood tests are perfect! I know I shouldn't be too happy because Crohn is hiding somewhere but for a little while I will...

I hope that everyone will have such moments...

Ania
 
Fabulous News!!! Glad she is feeling so well and able to enjoy skiing and everything, hope it continues forever!
We are supposed to have warm weather all week, I think skiing is just about done here.
 
Just a quick update here too...So Kasia has had her 11th Remicade infusion a few weeks ago. She is not taking MTX anymore which makes her incredibly happy! She is growing and feeling great. She had her first period 7 months ago, which the docs said, is a good sign (she was 13 and 3 months old when she got it). She has had her calprotectine levels elevated a couple of times before, but they went back down (any idea why???) and she has them elevated a bit again, but I hope this is the same situation, they will go down. The rest of her blood results are perfect. Maybe except iron which was low and they gave her iron infusion last time we went for the Remicade. The docs didn't think it is a big deal. Glad to be back...
 
That's great news she is feeling so well. I was just thinking about you guys. Is she on an 8 week schedule? Are they doing FC right before infusion? Maybe she is not making it the entire time and inflammation creeps back in but then she has infusion and is fine.
 
Hello Jmrogers...what is FC? Stool test? They do it in-between the infusion, in about 4-5 week (we send it to the hospital). One doctor mentioned that this can have something to do with any infection or her period.No idea... If I figure out how to post K's picture, you can see how much she has grown :)...
 
Yes FC (fecal calprotectin). Have they done an antibody test to see how much remicade she has in her system at that time?
We just shortened Jack's to 6 weeks next infusion as he nearly makes it the 8 weeks. We will discuss next time about increasing the dosage as he has gained enough weight that we may be underdosing him and then we would move back to 8 week schedule.
I would love to see a picture. Jack is very slowly growing, we had an endocrinologist appointment yesterday and will do some more testing to see if we can figure out why, he seems to be stalled at the development levels of a 12 year old and he will be 15 in a few months.
Does the blood labs show inflammation or stool? blood could be any infection, stool I thought was only intestinal but I'll see if I can find some research I could be totally mistaken.
 
Wow...Jack will be 15 already...time flies! They don't do the antibody test every time (we are doing 8 weeks now), the last time they did was 4 months ago and it was good. I am sure that if they see that something is wrong in her sent stool, they will check for antibody. About blood/stool thing...I thought the same, but that's what the doctor told us last time when I asked if the FC levels mean that she has a flare-up. She said that not really, it could be another infection or maybe her period...no idea about that...
 

DustyKat

Super Moderator
Thanks for the update Aniuko. :)

So fab to hear that all is going well for your lass! :dusty: I hope all continues to stay that way for a VERY long time. :ghug:

Dusty. xxx
 
Great update, glad to hear things are going well!

I've read there are only a few things that affect FC levels, I'm on my mobile but I think there is a paper in the Parents research section.

If I'm remembering correctly it was IBD inflammation, NSAID inflammation, colon CA, and maybe bowel infection(not entirely sure about the last one).
 
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