The Little Farm Girl and onto Remicade

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The Urologist dx my dd with Bowel and Bladder Dysfunction.
This is kind of a catch all term but the doc explained why.
My girl very well could have the auto-immune type Interstitial Cystitis (IC).
Its rare but since her IC got better after the first and second Remicade it seems likely.
This Urologist who is a pediatric specialist and takes the hard cases,
says my dd might have nerve problems to her bladder/bowel/pelvic floor.
She ran down the whole list of why she believes this and for once I couldn't ague.
We now will have to go to the hospital for 3, two day stays for specialized therapy and nerve testing/training.
We have two new meds to help my dd but I want to get the GIs take on this.

Symptoms returning, EN spots popping back up and her fatigue was bad enough I kept her home one day this week. :yfaint:

:mario2:But Remicade on Monday and all will be well................I pray!
 
FW,
Why does this new doctor think that? At least they want to investigate and figure things out. That seems positive.
 
There's this research being mentioned in some recent articles that discuss proactive monitoring of infliximab (Remicade) levels and doing dosage adjustment based on blood concentrations. This in contrast to the current approach which assesses for worsening symptoms and either doubles dosage (5mg to 10mg per kg weight) or increases infusion frequency. Circulating inflixmab levels have been shown to vary between individuals, and are affected by many factors such as age, weight and drug metabolism. The big takeaway was that with this approach about 1/3 less patients came off infliximab due to antibody development.

Farmwife, not wanting to throw another piece of literature your way as it sounds you have lots on your mind already, but I think the approach makes sense and is something worth looking into.
 
Well Remicade infusion number 3 is a thing of the past and all is well.:thumleft:

Within a few days after infusion her EN spots are almost gone
:emot-dance: , joint pains are getting better and belly pains are getting less and
her bladder inflammation seems to be a distant memory.:dusty:

Now we wait 8 weeks for next infusion.
I'm hopeful she can make it but will be surprised if she does.

Personally as a mom for the first time in awhile I have been able to look forward to the future and to RELAX!
I have been in the process of starting up a business. :thumleft:
This is only because of the good place my dd is in
thanks to the good Lord and Remicade.
 
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So glad to hear is working. Maybe if she starts having symptoms before the 8 weeks (hopefully not) her GI can order remi levels test to see if it needs to move it closer? It took a while for my daughter to see full results. Wishing you the Best.
 
Yahoo, It's taken us a while to find the right time frame/dosage but the good thing for us is for a majority of that time he feels great, actually he feels great the entire time it's just little things that have popped up in the last week(s) before infusion.
So glad she is feeling good and you can look at other things. Good luck on your business venture.
 
Good news FW! Really hope she goes from strength to strength. Good luck with your business venture!! :hug: xx
 
After such a long and rocky road it truly is wonderful to read this and I can only hope with all my heart that the good times remain for a very, very long time to come. Lord knows you and your lass deserve it! :Karl:

Dusty. xxx
 
SO glad to hear this. If she doesn't make it to 8 weeks, don't worry! You have a lot of room to play with the dose/frequency. We've never had to wait till the next infusion to get the new dose/frequency approved, so I guess it must depend on your insurance.

Hope she feels well forever :)
 
Great update! Good luck with your business. This is the second time I have posted this - connection kicked me off
 
I hope this mean life becomes, dare I say, NORMAL for all of you for a long time. What a blessing it would be! My prayers are with your family for a smooth road.
 
Update-
Constipation, 1 bloody stool, joint pains, EN spots,
fatigue and pale skin is back.
No virus as of yet. No real understing of why this is a cycle she's going through.

So this is where we stand with the doctors.

GI- The GI wants to discuss her slow down in growth and stalled weight (she lost the extra she gained).
We meet next month. I have a feeling scopes will be happening.

Dermatologist- Now wonders if Grace's EN spots are rheumatoid nodules.
Whatever they are, they are spreading to different parts of her body
and its starting to worry us.

GP- Once he hears about the spots popping up on her body will want to do labs right away.
I'm scared this is some serious form of vasculitis (sp?).

Rheumatologist- He mentioned switching Grace from MTX to Sulfasalazine.
I would think he would want to up Remicade.
Tomorrow is the 3 week mark since her last infusion.

To tell you the truth I didn't want to update at all.:(
Its so embarrassing to go back and forth between the good and bad updates.
But I feel if I don't at least share the good news I'll never find any.
 
Our Rheumo would not go "backwards"
Said sulfazine was too weak of a drug
Which is why we add Mtx..

Did she do the 23&me study ?
That might help you figure it out better .
 
Her Rheumy never made mention to it being a weak drug. I guess he was thinking of it helping the IBD side of things like the MTX does.

23&me, where do I get it from?
 
Interesting, we were told the same about Sulfasalazine. That it was a milder drug. Could they up her dose of MTX? MTX worked much better than Sulfasalazine for M (actually, Sulfasalazine did nothing at all!).

Arava (Leflunomide) is another drug like MTX used for JIA. It worked well for M. Imuran also used to be used a lot for JIA and RA. It's also used for Lupus and certain kinds of vasculitis I think?

Sorry to hear things are so up and down. I hope Grace feels better SOON! Maybe just a higher dose of Remicade or more frequent infusions will get everything under control?
 
I'm sorry to hear that Grace is struggling. A has gone a bit back-and-forth lately too. We've had a few spots pop up on her legs and arms recently, and it always concerns me too. As you know, she's had 2 biopsies and we still don't have a clear answer as to what the spots are. GI and Dermo think it is most definitely EN....Rheumo thinks it is cutaneous vasculitis. The only way to know for sure is to have a biopsy, and in our case that didn't help!

Given Grace's history, I don't think it is unreasonable to test for systemic vasculitis and your Rheumo should be able to help you with that. A had an EKG, echo, and MRA of abdomen/pelvis to rule out systemic vasculitis. We were considering a CTA, and should we suspect a systemic vasculitis again that will be our next step.
 
I am so very sorry to hear this Farmwife. :ghug:

Sulfasalazine is the drug from which the more modern 5ASA’s (Mesalazine) were derived. It is the aminosalicylate properties of the drug that have the beneficial effects so separating it from the Sulfa aspects is what gives the 5ASA’s the edge over Sulfasalazine when it comes to side effects. Therefore to go to Sulfasalazine you are going back to an entry level drug. I can see why some doctors would be loathe to go that path, particularly with Crohn’s, when you are already dealing with/have dealt with immunosuppressives and biologics.

I hope you can get things back under control very soon and your lass starts feeling better, bless her. :heart:

Dusty. xxx
 
My heart goes out to you and Grace. I don't have any medical advice, but I hope Grace has resolve soon. Never feel embarrassed. We are all sharing similar experiences and I learn so much from people like you on this forum.

XO,
Julia
 
So very sorry to hear that. Thinking of you and sending hugs. Hope they can come up with an answer :hug:
 
GI called and said for Grace to keep with Miralax and keep them updated.
Rheumatologist has yet to call back. I've left messages, Still no call.:voodoo:
She's done 2 days at school with no problem but was in pain half the night.

Ok, here's a question out of total curiosity,

Does your child's GI care more about lack of height or lack of weight? Or maybe both?

Before this flare up we asked if Grace could have her g-tube taken out.
But the GI said no because she hasn't really changed in weight.
However, she did gain 2.1 inches in the year.
She's not underweight at all and is even on the huskier side.
Just wondering what your GI's would think or have said?
 
Farmwife said:
You have to be 6 or older.:( to partake in the study.
Click to expand...

We are sad about that too.:(

I just wanted to say please don't feel embarrassed. I think it is a testimony to the very nature of hope that even though there are so many discouragements along the way - when you try a new treatment for Farmgirl, or add or subtract something from treatment - you are really hopeful! I think you are passing a special gift to your child when she can see that you don't lose hope!

Got to go deal with a poop sample...:ycool:
 
I would say both, she should be growing so typically a child would gain/grow at a certain level and if there is no change on either one and nothing that would effect that (diet/activity) then they should be gaining alongside growth if it was just a month with no gain then I wouldn't worry as I know a lot of kids gain, then shoot up in height to accommodate the weight gain.
 
When we first started with our GI (2 years ago) A was at the 5th %ile for height and 8th %ile for weight. He was most concerned with her height and felt there had to be some absorption issues. He said many kids are skinny....but with tall parents our daughter should not be at the bottom of the chart. She's currently at the 16th %ile for height and 9th %ile for weight. He's very happy with her increase in height but would like to see her weight match. She's still on the skinny side, even with those stupid supplemental juice boxes.
 
Our GI concentrâtes more on height but keeps an eye on weight. Even non IBDers typically gain then grow. A growth of that amount should put a little weight on though. You would think the extra bone etc would weigh something. Also, the GI likes a little cushion on weightf or flares. O is still at the 4th percentile for BMI so not likely she will ever have a cushion.

Our doc also has a saying, "skinny isn't a disease". Some kids are just always going to be extra thin. IBD or not. So weight is a harder barometer but yes he watches it and certainly a loss gets more than a glance.
 
Hmmmm, very interesting. Grace weight has always been an issue. Full EEN she has to have 500-800 EXTRA calories to keep her weight at 40-43 lbs. Once on full food she gained fast but has since lost it. So according to her record she has been in between 40-44 lbs for the last year and a half. Growth is however the best is been in 3 yrs.
 
Moving Remicade to every 4 weeks made a big difference for M. I hope it works like magic for Grace!
 
Farmwife said:
Once on full food she gained fast but has since lost it.
Click to expand...

So it really isn't that she hasn't gained she has lost. And a gain in height without some corresponding gain in weight within a year is still seen as a technical loss.

O did a stint of 4 week infusions. Has he done or is he planning a levels test?
 
crohnsinct said:
So it really isn't that she hasn't gained she has lost. And a gain in height without some corresponding gain in weight within a year is still seen as a technical loss.

O did a stint of 4 week infusions. Has he done or is he planning a levels test?
Click to expand...

The weight gain/loss was only over a 2 week period.
It was at the start of remicade.
The doc thought is was because she had intestinal healing taken place,
so she was able to put weight on.

I'm ok with every 4 weeks,
I just having one of those moments when I think.....
how did she get to this point.:(

The nurse warned me that our insurance company will probably deny the request to move up Remicade but that the Rheumatologist will appeal it.
So she said give them "some time" to call me back with a date for the next infusion.:voodoo:
Next week would be the fourth week. I don't know if it'll be sorted by than.
 
Really hope the new schedule does the trick! Hope the insurance doesn't take too long to sort out.
 
:voodoo:2nd denial from Insurance company to move up the infusions.:voodoo:
The doc will appeal it AGAIN!
Her pred burst is about to come to an end.
Its worked amazedly well. I hate for her to go back to pain again.
I don't know if Sulfasalazine is working, I think its to early to tell.
 
The Rheumatologist called..........................
he wants her to stay on pred until the next Remicade infusion. I knew a burst was a joke.;)
Oh well, its working.:rosette1: My love/hate relationship continues.:biggrin:

So I have a weird question that might have nothing to do with IBD,

Grace's bottom front teeth have grown in.
But their as small as the baby teeth she lost.
Could this because of her meds (like pred) that made her teeth smaller?
Or is this normal for some to have small teeth?
I don't even know who to call and ask.
 
She is 5 . Each tooth size differs
Ask a dentist if your concerned they can tell if the teeth are normal for her age
 
I don't know if this helps, but I found with some of my kids (those with no IBD), that their teeth can grow in really s-l-o-w-l-y (I'm talking months to grow all the way in).

Maybe Grace's teeth are just having a Pina Colada or something before they finish growing? :)
 
That could be it but I think it's been at least 3-4 months now.
Believe it or not it's my hubby that's more concern about this.
Lol, I get concern about blood in stool and such but he gets concerned about teeth size.:wink:
 
FW,
I think it is rare but I remember once reading that you can have an extra set of baby teeth. I would take her to the dentist. They can tell on X-rays for sure if those are an extra set of baby teeth or adult. They can also feel you if they are normal size.
 
Update
She vomited Friday night in the shower and there was blood in it. :frown:No bm Friday.
Saturday was fine but no bm's.:frown:
Sundays (today) her bm was pencil thin with a little blood and she vomited at church.:frown:

I'm thinking obstruction or side effect of one of her meds.

Remicade is tomorrow!!! I pray it helps!!!
 
Sending loads of luck and well wishes that the Remicade has your lass feeling on top of things again, bless her. :heart:

Thinking of you, :ghug:

Dusty. xxx
 
I vomited blood when I had a kidney infection. My only other symptom was severe back and chest pain. I know Grace has urinary issues so I would let her doctor know this is going on. I hope you can get things going in the right direction quickly!
 
Poor baby:( I also would call before leaving for the infusion just in case it might be an infection like dancemom mentioned or a bug. Sometimes if they are sick they will not infuse and if they do decide to infuse will move them to another room where there are no other patients.
 
CIC, Good idea about calling.

DanceMom, Grace has vomited blood before. When she was first dx it happened a few times. The GI (from Mayo) thinks the disease is in her stomach also. But I do think with the constipation, that kidney issues should be watched carefully. Thanks.
 
:thumright:Well she seems a bit more chipper this evening.
She was nauseous but no blood! Hey I'll take it.:rosette1:
So my love of Remicade is still there.:ybiggrin:

Hopefully well get through Christmas with little problems. :ysmile:
 
My son's response to very painful cramps is to vomit. I used to worry about obstruction... But it never was that for us. Also, when we were inserting NG tube in and out each day... We'd see a little blood in his vomit. I can't remember if Grace is doing NG tube right now.
 
Brian'sMom said:
My son's response to very painful cramps is to vomit. I used to worry about obstruction... But it never was that for us. Also, when we were inserting NG tube in and out each day... We'd see a little blood in his vomit. I can't remember if Grace is doing NG tube right now.
Click to expand...

She has a g-tube. She is having increased tummy pains by her bellybutton, so cramps could be possible.
Her GI wants her to do some kind of poo test to check for blood. Something to do with a smear of poo on a cards over 3 days. I think she's done this before.
Of course now theirs no blood in her poo.;) Go figure.
 
A has bloody stool occasionally too. It goes as quickly as it comes. I realize it means that things aren't quite right, but I also realize things could be a lot worse. I hope you get some answers for Grace soon.
 
Those card tests are for occult blood. Blood you can't see by just looking. Just because you can't see it, doesn't mean it isn't there...sorry to be a bubble burster. Hopefully those will come back perfectly fine as well.
 
When my son gets constipated he gets belly button pain. I hope everything gets resolved soon and she feels better.
 
Scopes coming.:yfaint:

I emailed an update on Friday to her GI and this morning the GI emailed back that she wants to scope Grace. She's hoping to tell if Grace has crohn's, UC or it's still microscopic ibd.
I'm waiting to hear from the scheduler from the hospital.


But here's my issue, if she's on all these meds, will the GI been able to tell which one it is?
I mean if there's no further damage and I pray theirs not, how will she be able to tell?
 
If you have full mucosal healing ( no damage visible or microscopic)
No way to tell.
Prior to remicade or Mtx there was still damage ( microscopic and visible on the scope )
After remicade for 8 months and Humira for 6 months there was no signs of damage except the duodenitis.
So if the meds working on the Ibd but not on the arthritis you won't see anything at all.
If her arthritis flared from Gi inflammation then you will see some .
No way to know without scoping but if she is vomiting there is something going on.
 
It will depend on the extent of response to treatment, as mlp has said.

If inflammation is still present then there may be landmarks that are peculiar to Crohn’s and not UC, such as depth of damage to the mucosa, granulomas (if present) and apthous ulcers. With treatment skip lesions may not be reliable as a marker for Crohn’s over UC.

*HUGS* to you guys. :heart:

Dusty. xxx
 
Thanks mlp and dusty. I know the GI is hoping to find granulomas, as she feels that Grace has crohn's because of the TI involvement and probably stomach.
 
M had the same things - basically microscopic inflammation in her stomach and colon (some tiny ulcers in her colon) and a "friable" TI. Biopsies showed granulomas.

Good luck!!
 
No word yet on the scopes.:voodoo:

The Remicade is wearing off.
So 12/15/14 was her last infusion. So that's 22 days.
Still trying to get time to file the grievance.
I need to contact 2-3 different people to make it happen.
Its ridiculous that I have to set aside 4 hrs just to talk to our Insurance Company.
.
 
Lordy! How hard is it to schedule a scope? It takes five minutes! Granted it may not be a date you want but the scheduler needs to get her in! This could make a big difference.

Sounds like you have quite a few calls to make. Good luck!
 
Grace has been vomiting all night. First thought is the flu but she's perfectly fine. No fevers, aches, pains and nothing else.
It seems like it's a lot of yellow.
Thank God she has her feeding tube but even the formula/ water mix is being vomited.
Calling the docs now!
 
Good answer! I hope it is a virus! While you are talking to them ask them about scope date;)

BTW - not to freak you out and put more pressure on you but those appeals/reviews and such have strict deadlines as determined by law. Make sure you find out how long you have to file etc because missing a deadline will leave you out of options.
 
Sending hugs FW. I hope you can get the Remicade approved fast. I can't believe how difficult your insurance is making it :( Any chance a dose increase (versus frequency of the infusions) would be approved faster?
Hope Grace starts feeling better soon:ghug:.
 
The doc upped her Zofran and said once a fever hits that she is to go to the ER.
Time to get my overnight bag ready....praying I don't have to use it.
 
Did the go tell you when the scope is ???
Typically you just call the scheduler once they put the order in and they give dates
The Gi doesn't necessarily give us the date .
 
Called the gal twice and have left an e-mail requesting the date and time.

Still at home waiting....................................
 
Call the main number...the one they actually answer. Tell them not to transfer you or take a message. Tell then you will wait on the line.
 
Theirs only one lady that schedules, she is also the head nurse for a different GI.
Their is no waiting, only voice mail.

Now I'm going to take on insurance while my hubby watches Grace.
 
GO GET EM:tank:

Maybe you have to kick it old school with the scheduler/head GI nurse. Show up at the office...how far is it?
 
My goodness! I hope you are soon able to get through to them Fw. :ghug:

And I hope things settle for Grace, bless her. :heart:

Thinking of you!

Dusty. xxx
 
Still at home. Now my boy is vomiting and looks worse than Grace.
Apparently she never got the memo that she was suppose to be the sicker of the two.
We'll see how tonight goes, I don't think I'll be sleeping much.
 
She's all better and bored because her brother is still laying out on the couch sick.
It's not the flu but the other bug going around.

Scope scheduled for the first part of February.:thumleft:
 
So glad she's better and scopes are scheduled. Hope your boy feels better soon!
 
Update:

She's just not bouncing back from this virus. Fatigue, joint pain (right knee mostly), constipation and low food intake.

But the most concerning is a raised slightly blistery rash that has grown (over 5 days) to form a circle.
Ya, first thought was ringworm!
But this is half dollar size and incredible painful and itchy.
I've already done 4 days of Nystatain (sp?) to no avail.
I'm going to send some pics to her dermatologist downstate and see what she says.

Have any of you had ringworm like this or can guess what is could be?
 
Farmwife, YES! Last year before our diagnosis little H had a mysterious circular abdominal rash. I thought ringworm at first but it didn't respond to meds and ended up being Pityriasis Rosea. Very Itchy and spreads. She had 4 or 5 half dollar size spots. I may have spelled it wrong but you will find it on the net.

I wondered if it was Crohn's related after the fact. I bet it was. Get some pics on the net and tell me if it looks similar.
 
my little penguin said:
Has she seen her pediatrician ???
They generally know ringworm
Click to expand...

Appointment on Friday with the GP.
Thank God I just found out my town now has a pediatric dermatologist. :smile: Hopefully no more 2.5 drives.
I'm going to call and see if I can get her in tomorrow.

Pilgrim ,Grace's is about 3 inches now:eek2: and is so painful she could barley sleep. Was your child's like this?
 
FW,
A painful fishlike that could be a number of things. Please call and tell them she needs an apt with a dermatologist ASAP.being on remicade puts these kids at high risk for certain infections. She needs to be seen. Maybe call and remind the doctor of the fact that she ison remicade.
 
Catherine said:
In case you don't know ringworm is very contagious!!

Glad you got an appointment.
Click to expand...

Yes! Keep the cows away from Grace!:ylol2:

All joking aside, the rash I remembered with H (Pityriasis Rosea) was more itchy than painful. It spread from a single circle into multiple circles then rashy spots. Poor Grace, hope she gets figured out soon.
 
Had an emergency appointment with GI this morning.
He ordered SED, CRP and CBC (boy, we have him trained).
The GP wonders is it's her EN, just a whole lot worse than normal.
but we're going to treat spot as ringworm until we hear from Dermatologist.
The one in town will not see kids as complicated as Grace.

Rheumy has prescribed Tramadol for Grace's joint pain. Has this med worked for anyone here?
 
Tramadol helped A's headaches and stomach aches, but not joints. We use it sparingly. It does cause constipation.
 
Tramadol helps M's joints. She takes it daily because of how bad her joint pain is. It makes her sleepy and it's sort of hard to concentrate at school, but overall she manages quite well on it. If it wasn't for Tramadol, I'm not sure how she would function.
We used Miralax for the constipation.

Good luck!
 
I just wanted to let you know that Tramadol has a very common side effect of urinary retention. I seem to remember that Grace has had some bladder difficulties, so this may be something to watch for. I had to stop talking this med because of this side effect. May you soon hear good news from the insurance company and helpful information from the dermatologist.
 
Lol, I meant GP not GI, stupid auto-correct. :cool2:
Multiple attempts made to contact the Derm and no call back. Grrrrrrrr

The Tramadol I was told is to be used as sparely as possible.


Update:
In all fairness, the Derm did call and left message but I never saw it. Oops.:cool:
 
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