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Crohn's Disease Forum » Parents of Kids with IBD » Another year older and a new Dx.


 
07-17-2017, 12:39 PM   #61
Farmwife
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Here's a question for allunch who knows more than me.

Grace is having intermediate pain and pressure in her stomach at her gtube site.
But. ....I can rotate her tube with out pain.

Any ideas?
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
07-17-2017, 01:08 PM   #62
Maya142
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Have you tried venting the tube? It could just be gas pains.

Feeding Tube Awareness has good info and a video on how to vent.

How does the tube site look - any granulation?
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
07-17-2017, 01:13 PM   #63
Maya142
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She's on 10mg/kg of Remicade, Maya.
Insurance fought because they said 10mg every four weeks was high.
I don't think upping will happen.
The Rheumatologist said she will get a split dose every two weeks. (5mg every time).
No he hasn't tested her levels. I didn't ask why. Maybe because they showed up normal before?
I have not heard of increasing frequency to two weeks. I do know that it's possible to do a higher dose than 10 mg/kg every 4 weeks, just because we've done it and I know several other kids who have.

M was admitted to the hospital for her first 20 mg/kg dose of Remicade to get around insurance. She was also in very bad shape and given IV steroids for 5 days.

Insurance actually did not fight that. We did not have to appeal (shockingly!!). I guess because she was admitted and because we had tried other options before, it was deemed medically necessary.

If she has enthesitis related JIA then your options really are another anti-TNF (Cimzia or Simponi) or Stelara.

The other option would be to add another immunomodulator. You could do Imuran + MTX (low dose). Or Imuran + Sulfasalazine. Or you could try Arava (M does really well on Arava).

Which joints are flaring right now?
07-17-2017, 03:33 PM   #64
Farmwife
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She's already on Imuran.
She also was on mtx but took her off that a year ago when
got better.
Hmmmmmm......I wonder if she could get back on mtx.

As to the tube, we use to vent all the time.
We tried it but nothing came out and she says it doesn't feel like it's gas.
07-17-2017, 03:46 PM   #65
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What joints are involved? If it's peripheral joints (for example: knees, ankles, fingers, toes, elbows, feet ) then adding MTX might help. Trying Arava (which is a replacement for MTX - M takes it because she can't tolerate MTX) might help.

Imuran MIGHT help for JIA, but it isn't really used much for JIA anymore.

MTX, Arava, Sulfasalzine are all used a lot more because they are safer and generally easier to tolerate.

If she has axial joint pain (SI joints for example), then you probably want to either up her Remicade dose/frequency (whatever the doctor wants and insurance allows) OR change biologics altogether.

We also use joint injections (directly into very inflamed joints) if there are just a few joints that are causing BIG problems. For example, we do SI joint injections regularly for M, since no med can seem to control the inflammation in those joints for her.

She also had a knee and elbow injection this spring which worked like magic and just got rid of the inflammation in those joints. It really was like magic!

If it's many joints, then you're probably better off switching or adding meds, or changing doses.

Pain and pressure at her g-tube site - could it be inflammation in the stomach? Does the site look ok - red or irritated? It could be an infection.
07-17-2017, 04:25 PM   #66
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What joints are involved? If it's peripheral joints (for example: knees, ankles, fingers, toes, elbows, feet ) then adding MTX might help. Trying Arava (which is a replacement for MTX - M takes it because she can't tolerate MTX) might help.

Imuran MIGHT help for JIA, but it isn't really used much for JIA anymore.

MTX, Arava, Sulfasalzine are all used a lot more because they are safer and generally easier to tolerate.

If she has axial joint pain (SI joints for example), then you probably want to either up her Remicade dose/frequency (whatever the doctor wants and insurance allows) OR change biologics altogether.

We also use joint injections (directly into very inflamed joints) if there are just a few joints that are causing BIG problems. For example, we do SI joint injections regularly for M, since no med can seem to control the inflammation in those joints for her.

She also had a knee and elbow injection this spring which worked like magic and just got rid of the inflammation in those joints. It really was like magic!

If it's many joints, then you're probably better off switching or adding meds, or changing doses.

Pain and pressure at her g-tube site - could it be inflammation in the stomach? Does the site look ok - red or irritated? It could be an infection.
Right know her biggest problem joints are knees, elbows, ankles subluxing and dislocation) 1 hip, one shoulder (keeps subluxing).
Our problem is figuring out jia from eds. Very frustrating

Tube looks good but inflammation in the stomach is a concern.
Last scope showed scaring and inflammation at the microscopic level.
She's also getting those old familiar pains back in her sides.
Constipation seems to be starting also.
I don't like where this is heading.

Her appetite is great but only because she's on prednisone and periactin.
I have to sneak into my own kitchen because if I make too much noise Grace runs in wondering if I'm making something for her. LOL not like I have anything else to do LOL
07-17-2017, 04:33 PM   #67
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Subluxing and dislocation sound a lot more like EDS than JIA.

Has she had ultrasounds or MRIs? Warm or swollen joints? That would tell you if it's inflammation. I would ask for imaging BEFORE you make changes to meds, because it would be a shame to take her off Remicade if EDS is the problem and it's not the JIA that is flaring.

Did the rheumatologist examine her before putting her on Prednisone?

Is she doing physical therapy for the EDS? If you strengthen the muscles surrounding joints, you should have less trouble with subluxing and dislocating joints (to some degree anyway).

Regular gentle physical activity - such as swimming and biking will also keep her muscles strong and help them support her joints.

It sounds like she needs testing to see if this is inflammatory or EDS - that will make the treatment decision. If it's EDS, PT could help a lot.
07-17-2017, 04:40 PM   #68
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Grace pain doc is a leading expert in EDS. Which is cool because we didn't even know that when she started seeing him.
He works closely with her rheumatologist to make sure everything is done well.
Grace has been in twice-weekly therapies for years now and works with a therapist that works with her pain doc also.
Her joints have actually never gotten red or swollen much.
Unfortunately her type of arthritis just doesn't have that in common.
That's why her rheumatologist said that her type of arthritis is actually more damaging than the kind that does swell.
Yes at mri's, xrays and such.
Thankfully all looks well. ......for now.
07-17-2017, 04:54 PM   #69
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I do not think that's true FW. We have seen about 18 rheumatologists, both pediatric and adult, as well as some world famous researchers, and I have never heard that.

There is absolutely no evidence that certain kinds of JIA are more damaging than other kinds. It's a spectrum for all types or kinds of JIA. Polyarticular JIA is not necessarily worse than psoriatic JIA which is not necessarily worse then enthesitis related JIA for example.

It really depends on the kid and the severity of the arthritis.

My girls both have enthesitis related JIA and now have progressed to AS. One has unusually severe AS, the other has moderate AS.

Both girls have had very red and swollen joints on occasion. Both girls have had joints aspirated (fluid was removed because they were so swollen). Both girls have had MRIs that showed effusions in knees/ankles/hips/jaw.

The swelling thing has to do with whether tendons are involved or joints are involved. Joints tend to get visibly swollen when they are very inflamed and tendons do not. In enthesitis related JIA or JSpA, both tendons and joints are involved.

If your kiddo has more tendon involvement, you may not see swelling with flares. You could still see redness and feel warmth. An ultrasound would show active inflammation and possibly damage from past inflammation (M has a lot of scarred tendons in her hip/elbow/pelvis)

MRIs and ultrasounds can be used whenever pain goes up to tell if there is inflammation. I understand that they've been done in the past - but have they been done recently to check if there is inflammation?

Alternatively, her rheumatologist could feel inflammation by examining her. Joints that are inflamed will have fluid in them and they can feel things like synovial thickening that are not visible to us moms.

M does PT twice a week as well as exercises once a day. She does both strengthening and stretching exercises. She is also hypermobile but has lost a lot of mobility in her spine. It is vital for her to keep her muscles - especially her core - strong to support her back.

I just would make sure that there is actually inflammation in her joints and the pain is not just from EDS (which can cause a lot of pain, but is not inflammatory) before touching her Remicade or adding other meds.
07-17-2017, 06:24 PM   #70
my little penguin
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Second what Maya142 said
Ds has JSpA
He does not have redness but does have swelling (I have a hard time seeing it -but doc can and points it out ) and warmth
Joints should be colder than the adjacent tissues
So if the ankle is warmer than the shin
Inflammation in the ankle

The best way to describe the warm is sunburn
The skin radiates heat like a sunburned skin does

We didn't add any steriods until after doc physically could examine Ds since he is hyper mobile as well so pain is not the best indicator

He also swims daily to in reader muscle strength to kept loose joints from hurting

Did the rheumo say exactly what type of jia she has -since there are many under the umbrella ?

Did she exam Grace prior to the steriods ??

Things get very tricky when kids have a lot going on

As far as constipation
How is her fluid intake ? Summer time kids get "busy"
And "forget" to drink as much
Plus they eat things different from their normal diet
We assign Ds water bottles
He has to finish prior to the end of the day
Helps with the constipation problem

Good luck
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07-17-2017, 06:40 PM   #71
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To add to what MLP said -- if a kiddo has amplified pain on top of everything else, then it becomes VERY difficult to tell what is just chronic pain and what is inflammation.

It is easier if the kiddo has visibly swollen joints or a high ESR or CRP. But if he/she does not, then the doc needs to do more testing - at the very least examine her before prescribing steroids, and if it's still uncertain, then using ultrasounds (can be done right in the office) or MRIs helps show when there is active inflammation.

I WISH there was an easier way to tell - it is definitely hard when a child has many things going on. In fact, I wish my daughters' joints glowed red when they're inflamed and green when it was just chronic pain (which is equally miserable and awful, but needed to be treated differently).

It's important to know IF it is inflammation, because you need to avoid steroids and losing out on drugs if possible. There is no point in switching Remicade or upping it if it is EDS causing the pain.

My older daughter, for example, recently saw an AS researcher who pointed out inflammation in her knees (swelling that we hadn't noticed) and loss of mobility in her back (he does measurements yearly, since she is in a study). She does have daily SI joint pain, but hadn't been complaining a lot recently.

Since she is generally doing ok on Humira (not a lot of pain with rest/inactivity or morning stiffness), we will do an MRI of her SI joints to see if there is active inflammation. If there is, depending on how bad it is, we will think about switching Humira. She could try Cimzia or IV Simponi or Cosentyx.
07-17-2017, 07:24 PM   #72
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Interesting, I guess our rheumatologist feels different.
Just repeating what I was told by a doctor.
Grace's xrays and one mri's did show swelling in the center of the joints.
I forget the name.
The doctor can feel it, even though I can't see it.
Multiple joints have been this way over time.

I'm glad I said no for now. To many variables!
07-17-2017, 07:33 PM   #73
Maya142
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Another option would a second opinion before changing meds. I understand that is not easy since some states only have one ped. rheumatologist.

Many families drive hours to see a second opinion. We have traveled many times - to Boston, to Houston, to Cleveland - it is definitely tough but has usually been worth it.

The swelling in the middle of her joint would be probably be an effusion - fluid caused by inflammation. X-rays can also sometimes show soft tissue swelling.

Good luck with whatever you decide! Waiting and seeing is not a bad idea, until you are sure it's caused by inflammation.

The best thing to do is separate out the variables until you find the actual cause of the pain.
07-17-2017, 07:46 PM   #74
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No one is saying to ignore your doctor
But rather to ask your child's doctor a lot of questions so you can better understand what is going on jia /actual type of jia and eds
And what is causing what
Without conversations things that need to happen may not happen
Inflammation needs treated
Pain needs treated (even if it's exercise )
But asking the hard questions an help you understand what it is
07-18-2017, 01:44 PM   #75
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I'm following this with interest as I'm learning about EDS. Hope Grace makes some progress.
08-22-2017, 06:12 PM   #76
Farmwife
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Some good news
Meant with the GI yesterday and......
All looks well with Grace.
Last stool test looked good, no blood in bms, no cramps, appetite is OK and labs look good.
She has now reached over 4 foot. Her weight is good and stable.
We plan to scope again in a year.
So baring any flare ups, she is pleased with her progress.

Some not so good news
Grace's jia and Ehlers-Danlos is not behaving.
Meant with her rheumatologist today.
Grace has been having bad head aches....daily.
Tried meds to help (she's on Topamax now).
Her docs want to investigate tethered cord or Chiara (don't know how to spell it ) malformation syndrome.
I hope is not these but want to find out. They're not unheard of with Ehlers-Danlos.
So we talked about treatment.
They feel her jia is still active upon physical. I agree.
Around 2 weeks Remicade gIves out.
We talked at length about the merit of giving half doses of Remicade every two weeks
They have 11 patients doing this at the clinic.
They have seen great success with 10 of these patients.
The 11th also had c-diff and some other problems going on.
So this child is still on it but they're not sure if it's working as good yet.
I decided to give it a go
We're hoping in 6 months time to switch her back but they do have another patient that has been doing this for over 2 years.

So as always we take the bad with the good!
I focus on the good and pray for the bad to get better.

I'm also homeschooling my kids this year. Lol
So hopefully I don't mess them up. ...more.

Any homeschooling moms out there?

Hugs to you and yours
08-22-2017, 06:22 PM   #77
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Wanted to add that remicade given every two weeks is because of her jia not ibd!
Rheumatologist use Remicade differently for jia.
08-22-2017, 06:29 PM   #78
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Good luck with Remicade. Hope it works for Grace.

We did up to 20 mg/kg of Remicade every 4 weeks. They wouldn't do every 2 weeks at our hospital, but they were ok with upping the dose (called "high dose Remicade"). There are a few trials of high dose Remicade in JIA, and it worked well for some kids.

It didn't work so well for my daughter, unfortunately, but every kid is different.

Hope the more frequent infusions work for her!!
08-22-2017, 06:31 PM   #79
my little penguin
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Glad you had a good ibd appt.
Is there any reason why you wouldn't change from remicade ?
Since it's not holding her and at high dose /high frequency with minimal benefit
Increases a lot of risk

That's what we were told which is why Ds was change to Stelara for JSpA (not ibd)
From humira


Fingers crossed it works
08-22-2017, 06:46 PM   #80
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I'll try to explain best I can to what they told me.

In kids like Grace they feel they go thru/burn Remicade to fast.
Instead of lasting 4 weeks they only last 2 and then nose dive down for two weeks
So a bad cycle starts acting like a roller coaster.
Up and down, never allowing the body to heal properly.
They've seen kids heal better at every two weeks.
Because in in theory they always have some Remicade in their system.
Hopefully this will stop the cycle or roller coaster.
Her rheumatologist and us feel that is worth a try.

Remicade has done wonders and hopefully it still will.

Hopefully that helps answer your questions.
08-22-2017, 06:52 PM   #81
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What dose will she be given every two weeks Farmwife?? Just curious. I feel like it's the same as what we did - except you're increasing the frequency of the infusions vs. increasing the dose.
08-22-2017, 06:56 PM   #82
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She was receiving 10 every 4 weeks but now it will be 5 every 2 weeks.
However, rheumatologist will ask insurance to approve 6.5 every two.
That way we can play a little bit.

Ya, insurance should be fun.
08-22-2017, 07:03 PM   #83
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M was admitted to start high dose Remicade, partially because she was REALLY flaring and needed IV steroids, and partially to get around insurance.

We did not have any trouble with her subsequent infusions - the ones does after the admission, outpatient.

You might have more trouble with getting it approved every 2 weeks vs. increasing the dose - as far as I can remember, I haven't seen studies on doing it every 2 weeks. But worth a try, since they've been able to get it approved for other kids.
08-22-2017, 07:50 PM   #84
my little penguin
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Farmwife we did something similar with humira for about 6 months
Humira at max dose every 5 days

It still eventually ended up burning through that
And needed to change types of drugs

We were told the body becomes saturated with anti tnf after awhile in these kids
More anti tnf no longer works because of this
So they are now switching to different types of drugs
To hopefully not burn through so fast

Ds just started so it's still all theory
Will let you know once we know more
08-22-2017, 07:57 PM   #85
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That was our issue with high dose Remicade too. M's first anti-TNF (Humira) worked very well with MTX...after that, we didn't really have much success with them for her JSpA (now AS). We tried 3 others - Remicade, Enbrel and Simponi. They all worked to some degree, Remicade quite well for a little while, but the effects didn't last.

We tried very high doses, all sorts of combinations with immunomodulators - MTX, Imuran, Sulfasalazine, MTX + Sulfasalazine, Imuran + Sulfasalazine, Arava.

Still only partial response for her AS.

But weirdly enough, her IBD has continued to respond well to anti-TNFs.
08-22-2017, 09:02 PM   #86
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I'm also homeschooling my kids this year. Lol
So hopefully I don't mess them up. ...more.

Any homeschooling moms out there?

Hugs to you and yours
Hi! I was a homeschooling mom for many years especially for my eldest two boys 20 and 22 now. At the time I loved it. I went nuts on curriculum and taught them some Latin, Greek, piano, all the regular stuff plus field trips whenever we wanted. We had a great home school community that planned events together and sometimes classes for the kids (like a regular gym time, and french classes). One of the boys LOVED it and wanted to keep on until grade 10. My other son hated it and went to school starting with grade 5. Very personality dependant. When they entered the school system they were well ahead of their peers in math and reading and still thank me for my heavy emphasis on literature. They are well adjusted. One is graduating from an aircraft maintenance engineer program top of his class and the other taught himself how to sail, lives on a boat and works in the movie business.
I have often thought about trying it again but not with all the kids (5 at home). I miss those days but the kids enjoy school as it is and I am older with less patience, lol. I hope you love it and it gives Grace flexibility to rest and be as well as she can be.
08-22-2017, 09:43 PM   #87
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Hi Farmwife,
We homeschool and love it. I have five kids total and my oldest two graduated homeschool. We use an online school program called time4elarning. The kids really like it. Then we also do a lot of reading as well and some extra workbooks.
Please feel free to PM me with any questions.
Caitlyn has dealt with a lot of headaches as well. It is actually very common in IBD
And can be a sign of a flare up coming on. I read an article that sometimes allergy meds like Claritin can help. Our doctor said it certainly can't hurt and we started her on Claritin and she has been complaining a lot less of headaches.
Caitlyn also has EDS and I know that on the EDS forums people do talk about some of them having tethered cords so it definitely is something to rule out. Usually done with an MRI.
Wishing her luck with the new schedule for remicade.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
08-23-2017, 06:08 PM   #88
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Hi Farmwife,

I started homeschooling last year for my son. He was very ill from July through December(diagnosed with Crohns Sept. 2016) and there was no way he could have gone to school everyday. He actually goes to school 2 days a week and I homeschool the other 3. He and I both love it and it has worked out well for the whole family!

I hope your Grace is feeling better soon!
08-23-2017, 09:23 PM   #89
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Thanks everyone.
I'm using the same curriculum that the private school used.
Hopefully that will make the change smother for my two.
I'm still surprised how encouraging the doctors have been.
Even going so far as to say that is probably the best for Grace.
Good grief, that's not the only reason I'm homeschooling.


A question for those of you that have kids dx with AS ( Maya142 and mlp )

What ages was your kiddos dx with AS?
08-23-2017, 09:47 PM   #90
my little penguin
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Farmwife
Ds does NOT have an AS dx

Anytime a child with IBD develops arthritis
It is categorized under the broad JSpA associated with inflammatory bowel disease dx

Which of course falls under the even more broad JIA umbrella

Officially he has
Type II POLYARTICULAR juvenile spondyloarthritis associated with inflammatory bowel disease

Joints /tendons affected
Knees
Wrists
Ankles
Hands (all fingers )
Multiple Toes
Heels
Hips (possibly)



The only time they switch the name to JIA is if the arthritis is dx before the ibd
Otherwise ibd is the primary disease
And
Any Arthritis is JSpA as secondary

Ds was dx at age 9--10 I think

Maya142 Dd has JAS
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