Summer Time Update for my Farm Kids

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Farmwife

Farmwife

Joined
Apr 28, 2012
Messages
6,242
Summer has been chugging along and its been busy but nice to have some routine.

Grace's update hasn't really changed, it's better then before dx but still not right.
Her bowel habits seem to be changing. Also I think we'll have to up her humira because day seven or eight she seems to flare a bit.

My boy hasn't been back to the GI since his scopes.
We hoped it would get better but it hasn't happened yet.
The GP labeled him with Ibs and gerd.
His symptoms- pain in his stomach when he eats and sometimes when he's not.
Bad abdominal cramps before having bm ( not all the time). Low body weight but not ftt yet. He has had blood in his stool but does have a fissures.
GP want the GI to take the lead for the gerd/Ibs like symptoms.

So next month we meet with the new GI. Should be loads of fun.:ybatty:

I hope y'all are doing good. I don't post as much but I always try to check on ya.:hug:
 
Was hoping for a better update but nice to let everyone know. I hope upping the Humira helps Grace. Poor boy, must be tough on you having two with GI symptoms. Good luck with the new gi!
 
Humira every ten days, how does your pharmacy handle this?

Grace's specialty pharmacy only sent me two humira because they come in a pack.
I called and said she needs three a month now. The can see the order but don't now how to handle it because two come in a pack. You wouldn't think it's a big deal but it seems to be.

I just used her last humira and still no word on how they'll handle it.:ymad:
 
I thought she has been on every 10 days for a while.
From dealing with our I think you just have to call more often .
One box every 28 days. But call after 20 days to be delivered before day 30( her third shot ).
Our will ship within 24 hours of calling sometimes needs 48-72 hours for a new script.
You won't have extra but then your not suppose to .
Good luck
 
You can ask her GI/ rheumatologist's office for a sample, if they don't get you one on time.
 
Mlp and Maya we were using samples the rheumatologist gave us already.
They've run out.
Grace can't be the first at the big mail pharmacy to need three shots a month.
You think they would have a protocol for this......like mlp describes.

Of course what's ironic is I think she might have to go to seven days for the humira but I'm still in my bubble until it pops.:)

Insurances you gotta love them.:ymad:
 
A month ago.....I believe.
He gave the samples to make sure it would improve things, if not we would head to Remicade.
It's worked (kind of), so he sent the new script though.
I'll call tomorrow.
Just wondering how other pharmacies do it.
 
You might have to chase it a little - I vaguely remember calling several times when M was put on Humira every 10 days. She had to go to weekly shots and I remember that our insurance had no issue with that - it was easier than getting Humira every 10 days!
 
Yup, they'll call every twenty days. :ybatty: Why did that have to be so hard.:ymad: for such an easy answer.
 
Some help PLEASE.:confused2:
Grace's is having more issues:(
She's going pee a lot. She seems like the need to urinate last for a few hours and then goes away. Took her to the GP and no UTI. She had no pain and the urine appears normal in color.
She's had this before and the pediatric urologist said he believes it caused from pressure of the colon put on the bladder.
Well Grace is going poo 3-4 (maybe more) a day. That it's new for her. It can be formed to lose water stool all in the same day. Plus low grade fever and easy bruising.

So to me if the colon is moving the stool out that their would be no pressure on the bladder, right?
Do your kids have bladder involvement that's not UTI's?


Also her arthritis has return. I know something evil is happening I just don't know what. We meet with the new GI this week and the rheumatologist hopefully will call Monday and let us know what he wants to do. The last appointment Remicade was mentioned. I'm hoping to keep with humira a little longer and up the time.:(
No easy answers.
 
A has some funky UTI-ish symptoms as well. She gets sharp pains that last anywhere from a few seconds to a few hours. She also feels the urge to go often and has even wet her pants. Her urine is clear and it doesn't hurt worse when she urinates so we haven't gone to the doctor about it yet. When she had a UTI back in February she was in severe pain and had very bloody urine, so this is different. Not sure exactly what is causing it and I'm sorry Grace is having issues as well.
 
Not sure - could it be overflow diarrhea? I think the medical term is encopresis: http://www.mayoclinic.org/diseases-conditions/encopresis/basics/definition/con-20029758

I hope the GI/ rheumatologist can figure it out, whatever it is! Did you ever move her to weekly Humira? It made a big difference for M.

The other thing I've heard of is urethritis with AS (my husband had it when he was younger, in his 20s). I've never heard of it in little kids ( but I have met a parent of a teenage boy with Juvenile AS who does have urethritis when he flares).

Also, M has low-grade fever with her arthritis flares. Her doctors have never been very concerned, it's just more evidence that she's not in remission. Hers actually goes away when she's on steroids.

Sending hugs!
 
So sorry to hear things are deteriorating! :hug: I hope the GI can help,that's good it's not long till the appointment. As for the urine, it may be irritation of the muscles around the bladder. I believe it is called trigonitis - inflammation of the trigone muscle around the bladder. If her joint issues are worsening, then maybe the area around the pubic joint is inflamed. I had this issue for a few weeks, irritation and frequency but no UTI, we never got any real answers but it did just go away on its own, so maybe Grace's frequency will too.
 
Catherine said:
Urine test? Did they only do the dip test in the office?
Click to expand...

Catherine, yes they did the dip and then looked under a microscope in the office and then send it for a culture. She always shows WBC in the urine but only a small amount.

Maya and Sascot that's always possibilities. She had this before but it seems worse right now.
DanceMom or girls sound alike. Grace in the flare a few months ago had the sharp pain but not to much this time but she does has abdominal pains now.:(

Off for her to get her labs taken but they never show to much.
 
Back to the hospital to have Grace give another urine sample.
Labs say her sed rate is 14 which is in normal range (0-20) but Grace is always between 2-5 even at her sickest.
Also her bun level has dropped really low.....I guess. I'll be asking for the report today.

Has any one dealt with low bun levels before?
 
Tomorrow is the big day to meet with the new gi.
I don't know why but it's a bit nerve racking.

Rheumatologist nurse called and got my message mixed up,
so now I have to wait another day to find out what to do with Grace's worsening symptoms.:ymad:
 
Steroids? Has Grace ever had joint injections? They usually do them under anesthesia for little kids and if many joints need to be injected. They've worked really well for M in the past, I think we'll be doing more soon.
 
I'm willing to do the shots in the future but right now I don't think it's bad enough.
I think her issues are more her tendons and/or ligaments.

I'm wondering about a pred burst but I'll see what all the docs say.:ybatty:
 
If it's her tendons and ligaments, it sounds more like JSpA than JRA (which makes sense considering the IBD). M is on steroids now and really enjoying feeling good!

I hope they're able to get her weekly Humira SOON!
 
I think she means visually mild IBD. So for example M's scopes always look mostly ok (just some redness) but biopsies show inflammation and granulomas.
 
Yep same with DS
Visually mild but biopsies tell a different story .
The paper referred to it as low grade Ibd
I just have found a copy yet
 
That's what confuses me:ybatty: Why if it's low grade or microscopic in Grace's case is this so complicated? Why isn't her symptoms mild? Why do these kids with "low grade" have to be prone to everything???

Sorry my rants over. Just stressed with what will take place tomorrow. :hug:
 
:grr1d::grr1d::grr1d::panda::grr1d:
Meant with the new GI and thought she was great.:)
So why the smileys???
In her professional opinion and years of experience she does not believe she has
True EGID's.
She did however label her with microscopic colitis in the ibd family.
She feels Crohn's but right now it microscopic and time will tell.
 
The shocker was her rectum:eek2: when she looked she found a fissure and inflammation in the area. What's the shocker Grace said it doesn't hurt right now.
The new gi wrote a seven day script for hydrocortisone acetate suppository.


Has any one used these suppositories? Do they work that fast?
 
M's GI prescribed hydrocortisone enemas for two weeks, so I guess they must work fast?
M has (so far) completely refused to use them so I have no idea if they actually work.
 
FWIW, my non IBD daughter suffers with the same UTI symptoms. Mainly in the summer for some reason. She has white blood cells in her urine, urgency, frequency and pain when urinating but when the culture the urine it is always clear of bacteria. They keep saying constipation too, but she is not constipated! She has also been having acid reflux lately which for her causes nausea at night. The two symptoms seem to crop up at the same time but I don't know how they could be related. Her labs are good but her WBC, and Neutrophils are very low. Her lymphocytes are high. B/C ratio is high too. We are waiting on Fecal cal but her Pediatrician thinks she is fine. They can't explain all the weird symptoms she is having and I think they roll their eyes when I call but something is going on with her. I sympathize with you FW, I hope they figure things out quickly! Keep us updated!
 
Same with Grace. She always has low counts.

The new gi doc said she wonders if the constipation is in the rectum not the colon.
Only an X-Ray will show that.

I forgot to update about my son:ybatty:

The new gi does not think it's gerd. So the plan is to reduce over a could months his ppi's and see how he does. If he gets sick she named a few test she wanted to try.
I'm a bit scared but a she said that we need to see what his body is going to do without the ppi's.
 
Have they explained Grace's low counts?

The GI is concerned with Johnny's low WBC and neutrophil count and his are higher than Brooke's! She isn't seeing a specialist yet though :(
 
The few times I asked they say it's expected with her meds but I always say she had counts before the meds.:ymad: Still their not concern.

Can I ask what your dd levels are at?
 
FW neutrophils and wbc is suppose to go down while on humira and really go down when combined with Mtx that is why they watch those bloodwork numbers .
Even if something else caused it before and was fixed they can't really tell by the numbers so to speak due to her current drugs .
 
Brooke's numbers
WBC 4.2 (range 4.5-13.5)
Neutrophil absolute 1.51 (range 1.80-8.0)
Lymphs 54 (range 34-42%)
Basophils 2 (range 0-1%)

Johnny's numbers (same range as Brooke)
WBC 4.3
Neutrophil absolute 2.58

The Pediatrician said Brooke's numbers are consistent with her having a virus. She has no signs of a virus though. I am not sure why she is not concerned at all.
 
If Brooke numbers are consistent with a virus, wouldn't you retest after enough time for virus to clear.
 
My girl was dx today w/ Erythema Nodosum.:(
Plus some type of Vasculitis on the toes. :confused2:
The dermatologist dx it and will let all the docs know.
Also they want biopsies done the next time they pop up.
Saw the Rheumy today:( the JIA is back and causing problems in the spine.

The Rheumy upped the Humira to every seven days.


Not a good day.
 
Ask for an incisional biopsy as opposed to a punch biopsy. The incisional biopsy will go deeper and be able to determine if you're dealing with EN or vasculitis. We never got a clear cut answer with either type and so the fear of vasculitis still looms (and she has 2 scars). Hope her lesions clear soon and aren't too painful for her!
 
We did both without anesthesia and it was fine. A laid back, played her iPad, and was very calm. The surgeon said that is not the norm though. I left it up to A and she insisted that she'd be fine. She was a little sore afterwards but it healed nicely (both times). Internal stitches are much easier to care for though.
 
FW,
Sorry to hear this! I was wondering did your daughter ever have immunologic testing like dance mom's daughter? A couple of days ago stumbled on an article about kids with immune disorders being diagnosed with Crohn's and the like and never being properly diagnosed. If I find it again I will post it. I was thinking about your girl because she has had symptoms for so long and she is so young and the medicines don't seem to be working well for her.
 
Sorry to hear Farmwife, your poor little girl! Hope the weekly Humira helps.
 
Farmwife said:
That's what confuses me:ybatty: Why if it's low grade or microscopic in Grace's case is this so complicated? Why isn't her symptoms mild? Why do these kids with "low grade" have to be prone to everything???

Sorry my rants over. Just stressed with what will take place tomorrow. :hug:
Click to expand...

Sending loads of hugs to you Fw. :ghug::ghug::ghug:

I personally think there may 3 reasons why this happening to your lass, although knowing it certainly doesn’t lessen the pain and heartbreak. :(

1. EIM’s have the potential to be present for months through to years before any significant intestinal damage is seen.
2. The majority of paediatric IBD presentations have large bowel involvement as opposed to adult which have a higher rate of small bowel disease. This leads into number three.
3. EIM’s as whole have a greater association with large bowel disease.

In my thoughts. :heart:

Dusty. xxx
 
I'm wondering if you had the extra immunologic testing, too, like kimmidwife mentioned above. We had that testing this week, no results yet. Also a young case.

Poor little farm girl.
 
Immunologic testing was done by Mayo. All normal. :yfaint:

EN still popping up.:ymad:

So a simple (I know your not doctors) questions,:)

Could the EN mean the IBD is still active or can it happen on its own?

Is the vasculitis part of an EIM or could it be from the drugs?

I will be calling the docs tomorrow, just trying to make a list of questions.
 
:ywow:Rheumy want an echogram and x-ray done.:yfaint: Am I missing something ? Always something.:ybatty:
 
M has had an echocardiogram too - her rheumatologist wanted to rule out certain rheumatic illnesses that affect the heart - wegener's granulomatosis (which is a type of vasculitis I think). I'm sure Grace's rheumo is just making sure that there is nothing else going on:hug:
 
Wouldn't the order be faxed to the hospital lab electronically?
None of DS's orders go through the ped .
We either get them by mail or they are in the system .
I thought your Rheumo was local .
 
Yep, A had an echo to check for systemic vasculitis. However, cardio said it would only catch severe vasculitis that had progressed for quite some time.
 
So bloods for ANCA/MPO/PR3 Antibodies were done?

EN and PG run parallel with disease activity as does large joint involvement. Axial involvement (spine, wrists, smaller joints) run independent of flares.

Dusty. xxx
 
Well what I see on the papers all say normal levels for those test, Dusty.
Unless their a different names on my paper.
I see.................
Immunology II A
S. Cerevisiae Ab, IgA, S
S. Cerevisiae Ab, Igg, S
CRP
ANA2 Ab
Antinuclear Ab
Anti-DS-DNA, IA, S
 
Are those the tests Mayo did? There are so many immune tests, some that have to be sent to special labs like Cincinnati Children's and ARUP. I don't believe all immune deficiencies present with low immunoglobulins.
 
I am not overly up on this stream of tests but I think the first set is the ASCA test, so what is used to help establish a diagnosis of Crohn’s but over time has been increasingly used in other inflammatory responses.

I mentioned ANCA as is it more specific to vasculitis than ANA.

Dusty. xxx
 
Sorry MLP its JIA now but I'm still old school and refer to it as JRA.:ybatty:
Plus the PCP orders the labs for test to be done. I don't know why, its all confusing to me.
Dancemom it was all done at Mayo for the labs.
Thanks Dusty


:ymad:My computer is having issues. The keys g and h have broken and my tablet broke.:ymad: I have to cut and paste the letters.:ymad: Do you know how many words have h and g:ymad:
 
Too funny on the G and H.
The reason I asked is if you have Ibd and arthritis then it's automatically
JSpA associated with IBD - only sometimes -JAS.
Did you get the JIA book from the arthritis foundation when she was dx.
It explains why the need for the echo etc...
 
I thought Grace was diagnosed with Polyarticular JIA? I've heard from rheumatologists that very young kids sometimes change subtypes as they grow - particularly from Polyarticular/Oligoarticular JIA to JSpA.
 
Maya142 said:
I thought Grace was diagnosed with Polyarticular JIA? I've heard from rheumatologists that very young kids sometimes change subtypes as they grow - particularly from Polyarticular/Oligoarticular JIA to JSpA.
Click to expand...

Yes Maya, thats still the official dx....right now. I was told it might be changing as time goes on.
So I guess next visit Ill ask if its changed.
 
EN still popping up, legs look horrible.:(
She is using the bathroom even during the night to go pee.
During church service she left 5 times to use the restroom.

Meeting with graces gp to discuss x-ray, EKg and now the GI wants stool testing done. It'll be a busy week.:ybatty:
 
Day 3 or 4 would probably be ideal to biopsy. Too soon or too late and there could be some confusion. Unfortunately there seems to be much debate when viewing the slides because skin biopsies seem to be the trickiest to read (according to our docs).
 
:ybatty:Oops, I meant of her toes not the EN spots they want the biopsies from.

The Dermatologist said she knows its EN and didn't need a biopsies unless the Reumy wanted one.
 
Our dermatologist, GI, and clinic pathologist were positive A had EN. The Rheumo and hospital pathologist were positive she had vasculitis. I'm not advocating you biopsy them, I'm just saying there is no way of being sure what you're dealing with without a biopsy, and even those can be difficult to read. If she has vasculitis on her toes it's plausible that she has it in other areas too.
 
Wrong week.:ybatty: I felt like an idiot as she (secretary) told me its next week.
Well at least its not important.:ymad:
 
my little penguin said:
Wouldn't the order be faxed to the hospital lab electronically?
None of DS's orders go through the ped .
We either get them by mail or they are in the system .
I thought your Rheumo was local .
Click to expand...

Nope, not local.
:ymad:What's more confusing is the GI sent an order for the stool test.
Why cant the Rheumy send one for an ekg? I've called twice and the nurse said if her doc had more questions to call.:ymad: I know the gp doc will I've me an ear full but I've tried to no avail.


2 EN spots along her spine now. Is that normal? Calling the Derm tomorrow.
 
A got them along her spine too. Those always looked awful. Rheumo said that was more typical of vasculitis than EN. He had a whole folder in his cell phone with pics of A's lumps.lol
 
grace now as inflammation of the bladder wall and will be seeing the Urologist soon.
She has to go pee every few minutes and is starting to cry and get angry over having to go so much.:(
EN spots still there and painful.:(
JIA (arthritis) is affecting all most everything in her body. :(:(

Just found out the Rheumy wants to place my DD on Remicade. Still waiting on the finale word.

Another bad day.:(
 
Not sure about the bladder wall but I know urethritis can be a part of AS (or Juvenile Spondyloarthropathy---Juvenile AS is quite rare!). She might eventually be diagnosed with that which would make sense, considering the IBD.

Sorry to hear Grace isn't doing well :( I hope Remicade will be her miracle drug!
 
Maybe Remicade will be her "magic potion". Think positive! I would also question whether systemic vasculitis could be a possibility. Grace doesn't seem to be a textbook kind of kid.
 
Yes, very true - I've heard of kids with "overlap syndrome" with features of several different rheumatic diseases.
M did very well on Remicade and MTX -- I agree with DanceMom, think positive!
Sending HUGS!
 
So sorry to hear she is suffering so much. No experience with Remicade - really hope they can get it started soon!
 
Depends on insurance / tests needed
Our insurance covered it without any pre approval needed etc.
He only needed a tb test so that took a few days .
From decision to infusion about two weeks maybe less.
They really wanted him off pred at that point.
What test did they do to determine her bladder was inflamed ?
 
Let's see - the first time it was two weeks after Humira, the second roughly two-three weeks after Enbrel, and the third in the hospital, 5 days after her Humira shot (and she was put on high dose Remicade - 20mg/kg and solumedrol). It really does depend on insurance (unless she's inpatient).
 
Hi, Sorry to hear about Grace's continued troubles. :ghug:

It was about a week for H to start Remicade, mostly related to getting the TB test and results.

Wishing you guys success with Remicade.
 
So here we come to the end of yet another summer:(

grace is so ready to get back to school. She's always loved learning,
my boy on the other hand :yfaint: gripped and groaned the whole shopping trip to pick up the supplies.
Of course it wasn't helping that I was belting out the tune of the Christmas carol, Its the happiest time of the year.:rof:
I have decided that Christmas is no loner the happiest time of year........back to school time is.:banana: I've tuned into my mother. :facepalm:

Update:
I gave grace her last Humira shot.:) I told her about the new med to help her but she seemed worked up about the IV part. She's always hated IVs. :(
Talked the Rheumy nurse and hopefully in the next two weeks remicade will be started. She will start grace on pred next Thursday to brigde the gap between treatments.

They want to do loading doses at 2, 4, 6 and then 8 weeks apart.
Is that normal?That seems like a lot to me.

:birthday2:
Its my birthday this week-end and do you know what I want to do.....NAP.:) Ya, its been a long year.

have a good Labor Day in the USA everyone. :bigwave:
 
Aren't the loading doses at 0 weeks, 2 weeks and 6 weeks?

Every time M has been on Remicade, that's what we've done. Maintenance doses range from 4-8 weeks. We started at 6 weeks because for AS (in adults), it is FDA approved for every 6 weeks and her rheumatologist didn't want to try getting to 8 weeks when she was flaring.

As far as I know, Remicade is not actually approved for JIA, but is used off-label, so perhaps every pediatric rheumatologist does it differently?
 
I think the confusion is how they stated it .
Week zero infusion # 1-loading dose
Week two infusion # 2-loading
Week 6 ( 4 weeks from week two) infusion # 3
Then maintenance dose six weeks later
Finally dose every 8 weeks
 
We started Remicade in about 2 days after the doc said so. We were in the hospital so it was a little easier to get everything rolling. As a bonus it made insurance easier to get it all approved. That dosage was the same we started on. Hopefuly it stays at that, but if things don't improve they may move it up to every 4 weeks or every 6 weeks after all the loading dosage. Good
 
2 DOSAGE AND ADMINISTRATION

2.1 Crohn’s Disease
The recommended dose of REMICADE is 5 mg/kg given as an intravenous induction regimen at 0, 2 and 6 weeks followed by a maintenance regimen of 5 mg/kg every 8 weeks thereafter for the treatment of adults with moderately to severely active Crohn’s disease or fistulizing Crohn’s disease. For adult patients who respond and then lose their response, consideration may be given to treatment with 10 mg/kg. Patients who do not respond by Week 14 are unlikely to respond with continued dosing and consideration should be given to discontinue REMICADE in these patients.
2.2 Pediatric Crohn’s Disease
The recommended dose of REMICADE for pediatric patients 6 years and older with moderately to severely active Crohn’s disease is 5 mg/kg given as an intravenous induction regimen at 0, 2 and 6 weeks followed by a maintenance regimen of 5 mg/kg every 8 weeks.
2.3 Ulcerative Colitis
The recommended dose of REMICADE is 5 mg/kg given as an intravenous induction regimen at 0, 2 and 6 weeks followed by a maintenance regimen of 5 mg/kg every 8 weeks thereafter for the treatment of adult patients with moderately to severely active ulcerative colitis.

2.4 Pediatric Ulcerative Colitis
The recommended dose of REMICADE for pediatric patients 6 years and older with moderately to severely active ulcerative colitis is 5 mg/kg given as an intravenous induction regimen at 0, 2 and 6 weeks followed by a maintenance regimen of 5 mg/kg every 8 weeks.

2.5 Rheumatoid Arthritis
The recommended dose of REMICADE is 3 mg/kg given as an intravenous induction regimen at 0, 2 and 6 weeks followed by a maintenance regimen of 3 mg/kg every 8 weeks thereafter for the treatment of moderately to severely active rheumatoid arthritis. REMICADE should be given in combination with methotrexate. For patients who have an incomplete response, consideration may be given to adjusting the dose up to 10 mg/kg or treating as often as every 4 weeks bearing in mind that risk of serious infections is increased at higher doses [see Adverse Reactions (6.1)].

2.6 Ankylosing Spondylitis
The recommended dose of REMICADE is 5 mg/kg given as an intravenous induction regimen at 0, 2 and 6 weeks followed by a maintenance regimen of 5 mg/kg every 6 weeks thereafter for the treatment of active ankylosing spondylitis.
Click to expand...


From

http://www.remicade.com/hcp/prescribing-information
 
^ Weird, right that isn't approved JIA? Ped rheumatologists use it all the time and never even tell you that it's off-label. You would think by now it would be approved!
 
Humira isn't FDA approved for pediatric crohn's either but is approved for JIA....
Just gotta love it.
It's being used off label.
 

Similar threads

C
Your thoughts, please. 10 yr old.
Replies
14
Views
1K
Crohns dad
C
C
Jaw swelling,
Replies
9
Views
1K
asadmom
A
M
7 year old in pain not diagnosed
Replies
4
Views
1K
my little penguin
my little penguin
A
What would you do?
Replies
22
Views
2K
Delta_hippo
D
Papantoine
Neglect?
Replies
0
Views
239
Papantoine
Papantoine

Latest posts

Back
Top