Crohn's Disease Forum » Parents of Kids with IBD » 10y. old son newly diagnosed, sed rate high for months


 
07-19-2017, 05:33 AM   #31
my little penguin
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Given his age please try to see neurologist
Could be a lot of things including Tourette's syndrome which causes tics
These tend to start around that age
25% of all kids have tics at one point or another
But not Tourette's syndrome
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07-20-2017, 06:35 PM   #32
Jelly loves Peanut butter
 
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Had appt. today with my pediatrician about this head nodding thing. He said a lot of people get these "tics" from stress and they usually go away on their own. It makes sense since my son's MRI is next week and he is very worried about it. He said it is highly unlikely that this is Tourette's but to come back if it worsens and he would send a neurology referral. He also wanted me to let GI and rheum know about this in case they had any input. After he explained everything to me he turned to my son and started talking to him about all the things he has been through in the past year and told him it was normal for him to feel stress and some people express it through these tics. Broke my heart to see his eyes fill with tears as he held back from crying. Thank you Maya and MLP for your input and caring.
07-20-2017, 06:56 PM   #33
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Your poor little guy !! Have you considered seeing a psychologist? Dealing with a chronic illness (or two) is tough and sometimes kids need help. My daughter's GI absolutely insisted she see a psychologist. My daughter was a VERY stubborn teenager at the time and resisted it, but once she finally went and got used to seeing her psychologist, she said "Mom, why didn't you make me do this sooner?!"

She now reminds me to make appointments for her. We see a psychologist that specializes in kids with chronic illnesses (our pediatric GI dept. actually has several on staff) and it makes all difference in the world for her.

It did take some time for her to get used to going and she grumbled a lot at first.

Is there anything that would help your son deal with the MRI? Do they have movie goggles at your hospital? Many children's hospitals do, and my daughter loves them!! She has about 20 MRIs and she is not a big fan, but if she's distracted, she does better. Other hospitals give headphones (noise canceling usually) and let them choose what to listen to.

A pelvic MRI (I'm assuming this is for his sacroiliac joints) isn't that long. If it's with contrast, then it would probably be 45 minutes, but without contrast, it's usually 25-35 minutes or so. Not as bad as an MRE.

He will also be lying on his back and not on his belly (not sure that makes a difference to him).

When my girls were younger, we used to do something special after tests (they both hated MRIs) - usually a movie or baked their favorite dessert or just something to look forward to.

Sending hugs!!!
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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
07-20-2017, 06:58 PM   #34
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If your son can tell you what exactly he is worried about, I can ask my girls what might help.

It depends on whether it will be done with contrast, but if there is no contrast, then he won't even need an IV. Recent studies (on kids with JIA specifically) show that pelvic MRIs do not need contrast to show sacroiliitis but the protocol varies at different hospitals. We have done almost all MRIs without contrast.
07-20-2017, 08:52 PM   #35
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Wow Maya, your girls have gone through so much...they must be so strong and brave! And you too! I feel terrible that my son has to not only deal with the physical part but also the emotional part. It just hurts me so much. I can't even imagine all the feelings you have gone through! It looks like your daughter with Crohns had the joint problems for a few years before Crohns dx. That must have been hard for both of you too to get yet another chronic disease. How are they both doing now?

Do both of your girls go to a psychologist? How often do they go? I haven't considered that for my son as of yet. His older sister just graduated college and moved home in June and she has always been so supportive to him. I think having her home will do him a lot of good emotionally.

As for the MRI,it is with contrast and he is worried about the IV (they had a hard time placing it last time). He said the MRI itself wasn't too bad and he is glad that he doesn't have to lay on his stomach. He is also worried that he will get bad results and will "need surgery." He heard the GI say that once (I don't even remember myself) . I've assured him that he won't need surgery, regardless of the result but I know that is on his mind.

I signed him up for surf camp next week so he will go in the afternoon (MRI is Wednesday morning). He loves surfing so he is really looking forward to that! Do you think he will be able to bring his stuffed bear in the MRI? There isn't any metal on it but I'm not sure if he is allowed to have it. When he had the colonoscopy, they let him hold it as he fell asleep with anesthesia and he really loved that.

Thank you again Maya for responding. It is so nice to have someone that actually understands what my son is going through. When I talk with my friends and family, the conversation always seems to turn into them knowing someone or their child had a similar symptom or experience. I was telling my sister about the possibility of changing to humira and she said I need to be careful because that will suppress his immune system. Really!!! I nicely reminded her he is already on a medication that suppresses his immune system
07-20-2017, 09:09 PM   #36
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So a few things -

NO surgery is going to be needed. Your poor sweet boy. They don't do surgery on the SI joints for arthritis generally - even in adults! I think the best way to explain it would be to say that the doctor needs to see if his SI joints (those are the joints where the pelvis meets the spine) are inflamed. If they are, he might need different treatment to feel better.

But it will NOT be surgery. Poor little guy. My girls have had arthritis in their SI joints for 7-8 years and there has been NO surgery necessary. Same with my husband - he's had it in his SI joints since his 20s and has never needed surgery there!!

He may need a different med and it may be a biologic though - a shot or an IV. But I wouldn't tell him that necessarily till you have discussed it with the doc and gotten results.

For the IV - they can use numbing cream. That actually does help. Another trick is making sure he is well-hydrated - veins are easier to find. Using a hot pack on a vein will also make it pop up and easier to find. Buzzy is also helpful - we use that for shots but it also works well for IVs.

As for the bear - honestly, I am not sure. I don't see why not, but it depends on the hospital. I have actually gone in with my girls for many MRIs. They'll let you go as long as you don't have metal on your clothes. Some hospitals will give moms scrubs to change into. Generally I just sit in the room and they feel better knowing I'm there.

Of course, my girls are much older now and don't need that, but there have been times that they have just wanted me there.

And promising ice cream after the MRI never hurts .

My younger daughter was diagnosed with enthesitis related arthritis/juvenile spondyloarthritis at 12. She developed Crohn's as 16. Her arthritis is much worse than her Crohn's and has been her "main" issue, though the Crohn's has been problematic for the last year. My older daughter was diagnosed as a teenager but thankfully has not been diagnosed with Crohn's.

Both girls have progressed to Ankylosing Spondylitis. My husband also has it and has had it since his 20s. He has very severe AS, but we have been able to prevent a lot of joint damage for the girls because meds exist now that didn't when he was diagnosed (biologics).

So unfortunately, we have way too much experience with this disease.

My younger daughter has many chronic illnesses and has been pretty sick for the last few years. She sees her psychologist weekly in the summer/winter break and probably 1-2 times a month during the school year (she is at college, but an hour away).

It has been a HUGE help.

The other thing that has helped is meeting kids with arthritis/IBD. There are juvenile arthritis camps run by the Arthritis Foundation. CCFA also has camps (Camp Oasis) in many states for kids with IBD. There is also the Juvenile Arthritis Conference which is a 3 day event every a year. Lots of info for parents, presentations by doctors, meeting other parents and lots of fun for the kids. There is a young adult track that my girls go to now, but there are also kids' sessions for babies - 12th graders.

It really helped them not feel alone. The Arthritis Foundation also has "Family Days" that we have attended for many years. That's fun too.

Plus many hospitals have support groups too - I know our children's hospital does for IBD. We've never been to that, but I'm sure it would help.

As for my girls...well, my younger one is a work in progress. Her AS is very severe and has been hard to control. She has been on basically everything that is approved for AS and it looks like we will be trying a new, off-label biologic soon. Her experience is NOT typical - it is very far from typical - so please don't be discouraged by that.

My older daughter is doing well! She graduated from college and has been on MTX and Humira for several years. They are working quite well for her. She had a very normal and fun college experience and now works full-time. She is a happy and active young adult. Her AS is pretty well-controlled on her meds and she is able to live quite normally. She does not see a psychologist anymore, but in college she saw one every month or every two weeks for a while.

The goal would be to get the arthritis (and Crohn's) under control as soon as possible, so your son can get back to being a normal kiddo. It WILL happen. The first year is tough - the steepest learning curve - as you try and figure out which medications are the "right" ones for your child.

But once you have figured it out, then he will feel a whole lot better.
07-20-2017, 09:13 PM   #37
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I wanted to add - my girls have been on biologics for years and we haven't had trouble with infections. Just "regular kid stuff" - about a cold a year, which they got anyway before being on biologics.

We've had no side effects and no issues at all on biologics. The Humira shots hurt and that was probably the hardest part for my girls when they were younger. They both started with Humira too. But there are ways to make the shot hurt less and AbbVie will be changing the formulation soon, to make it less painful.
07-21-2017, 08:09 PM   #38
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Thank you Maya!! Because of you I asked my rheumatologist to do the MRI without contrast and he agreed! Made my son so happy, no IV!!
07-21-2017, 08:55 PM   #39
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That's great!!

This is one article about it. There are more that say more clearly that contrast isn't completely necessary.

I think of all the pelvic MRIs my girls have had, they've only had one with contrast each. Maybe two for my younger daughter. And they have them yearly.

https://www.jbsr.be/articles/10.5334/jbr-btr.1198/

Conclusion
MRI of the sacroiliac joints in children is a useful tool and should be applied in clinical practice in children suspected for JSpA. There are multiple features of active inflammation and structural damage visible on MRI of the sacroiliac joints that can provide a specific diagnosis of JSpA when present in children with suspected sacroiliitis. Luckily, in many cases, different features are seen concomitantly, making it easier to diagnose sacroiliitis with more confidence.

The adult ASAS definition for a positive MRI needs some adaptations for children. Including small BME lesions that are only visible on one slice or synovitis in the definition could increase its usefulness in daily clinical practice.

MRI without contrast administration is sufficient to identify bone marrow edema, capsulitis, and retroarticular enthesitis as features of active sacroiliitis in JSpA. In selected cases, when high short tau inversion recovery (STIR) signal in the joint is the only finding, gadolinium-enhanced images may help to confirm the presence of synovitis.

We found a high correlation between pelvic enthesitis and sacroiliitis on MRI of the sacroiliac joints in children. As pelvic enthesitis indicates active inflammation, it may play a role in assessment of the inflammatory status. Therefore, it should be carefully sought and noted by radiologists examining MRI of the sacroiliac joints in children.
I'm going to see if I can find the other article about contrast for you.

Really glad your kiddo can skip the IV this time .

I would work on either getting Buzzy or numbing cream or strategies for future IVs, because unfortunately, these kiddos have to get used to all this.
07-21-2017, 08:58 PM   #40
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This is the other article: https://www.ncbi.nlm.nih.gov/pubmed/25892309

DISCUSSION
This is the first study to systematically evaluate the utility of contrast for the detection of acute and chronic lesions consistent with inflammatory sacroiliitis in children with suspected or known JSpA. In this cross-sectional retrospective study we found that the use of gadolinium-enhanced sequences did not add incremental value to fluid sensitive sequences for the detection of acute and chronic lesions consistent with inflammatory sacroiliitis in the pediatric population. In a setting of clinical suspicion for SpA, according to the ASAS criteria(1), the presence of subchondral or peri-articular bone marrow edema is sufficient to make a diagnosis of sacroiliitis in adults. In our study there were 22 joints with active sacroiliitis. Eighteen percent and 59% of joints with sacroiliitis also had capsulitis or synovitis depicted, respectively. The prevalence of these supportive lesions in our cohort is in accordance to what has been published in the adult literature (2). Gadolinium did not enhance the ability to detect bone marrow edema or capsulitis but did enable detection of synovitis. All cases of synovitis and capsulitis were coincident with bone marrow edema on fluid-sensitive sequences. Lastly, inter-rater reliability amongst three pediatric radiologists for bone marrow edema was nearly perfect.

Our findings should be interpreted in the context of several limitations. First, our sample size was limited at 51 children (102 sacroiliac joints). However, despite the limited sample size it is the first study to systematically evaluate the utility of contrast to detect bone marrow edema and other acute and chronic changes that are consistent with sacroiliitis in children. Second, because this wasn’t a prospective study there was not uniformity in the MRI sequences obtained. All studies did include oblique coronal views to ensure adequate visualization of the sacroiliac joints. While this impacts uniformity of image attainment, it may actually provide greater generalizability of our findings. A variety of sequence protocols exist across care centers, and both 1.5 and 3.0 tesla magnets are used in everyday practice.

A few findings from this study warrant additional discussion. First, both fluid sensitive and gadolinium-enhanced sequences can be used to detect acute and chronic lesions consistent with inflammatory sacroiliitis in children, as evidenced by the substantial Fleiss kappa values in our study. However, as aforementioned the administration of contrast is not without consequences in children, ranging from pain and anxiety (secondary to IV catheter placement) to the risk of severe contrast allergic reaction. Although gadolinium did enhance detection of synovitis, this finding was uniformly in the presence of bone marrow edema and therefore did not alter the final diagnosis.

Second, currently there is no uniformly accepted definition of pediatric sacroiliitis. Since all cases of synovitis, capsulitis, and enthesitis were coincident with bone marrow edema on fluid-sensitive sequences we believe that the ASAS criteria(1) for sacroiliitis are applicable in children. Since interpretation of synovitis, capsulitis, and enthesitis can vary greatly amongst radiologists as evidenced by the Fleiss kappa from this study, interpretation of these features as supportive but not diagnostic in children will reduce the likelihood of false positive diagnoses. Additionally, MRI findings need to be clinically correlated taking into consideration the pre-test probability and strength of clinical suspicion. Indeed, our findings are not in agreement with a recent case series that suggested synovial enhancement could be seen in the absence of bone marrow edema in children; in that study 1/3 of cases of sacroiliitis were based on the presence of synovitis in the absence of bone marrow edema (20). A precise definition for synovitis in the study by Lin et al. was not provided and we suspect that the threshold for calling synovitis positive was lower than in this study. Histopathologic studies with MRI evaluation have shown that a true synovium is only in the inferior aspect of the joint (17). Thus when joint capsule enhancement is seen in more proximal aspects, a finding of synovitis may be overcalled. Accurate diagnosis of sacroiliitis in children has important implications for treatment decisions, namely use of a TNF inhibitor, and future disease monitoring.

Lastly, based on the variety of images reviewed in this study we suggest that the optimal sequences for evaluation of sacroiliitis in children are the following: oblique coronal STIR, T1 turbo spin echo, and axial T2 fs through the sacroiliac joints; coronal T2 fs of the entire pelvis; and large field of view images to screen for hip pathology. Prior studies correlating MRI to histological findings in adults have demonstrated that the ventral and dorsal aspects of the sacroiliac joints are only visible with oblique imaging (17). These studies recommend inclusion of oblique coronal T1 sections as well as oblique axial STIR/T2 fs for adequate assessment of the entire joint (17).

In summary, this is the first study to demonstrate that gadolinium-enhanced sequences are not necessary to evaluate for acute and chronic changes consistent with inflammatory sacroiliitis in children with suspected or diagnosed with JSpA. There may be cases in which alternative diagnoses are being entertained, such as infection or tumor, in which the use of gadolinium may still be advisable. Avoidance of unnecessary gadolinium contrast will save time in the scanner, healthcare dollars, and will obviate the need for pre-contrast screening blood tests and IV placement unless needed for sedation or other purposes.
07-21-2017, 09:06 PM   #41
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This is another: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4720597/

Assessment of Sacroiliitis at Diagnosis of Juvenile Spondyloarthritis by Radiography, Magnetic Resonance Imaging, and Clinical Examination.

Weiss PF1, Xiao R2, Biko DM1, Chauvin NA1.
Author information
Abstract

OBJECTIVE:
To evaluate the prevalence of sacroiliitis at diagnosis of juvenile spondyloarthritis (SpA) and the accuracy of physical examination and back pain to detect sacroiliitis, using imaging as the reference standard.

METHODS:
We performed a prospective cross-sectional study of 40 children with newly diagnosed juvenile SpA and 14 healthy controls. Subjects were assessed using physical examination, anteroposterior pelvic radiograph, and pelvic magnetic resonance imaging (MRI). Differences in clinical features between those children with and without sacroiliitis were assessed by Fisher's exact test for categorical variables and Wilcoxon's rank sum test for continuous variables. Accuracy of physical examination and back pain for detection of sacroiliitis was determined using MRI as the reference standard. Predicted probability of sacroiliitis was determined using exact multivariate logistic regression.

RESULTS:
Eight children (20%) with juvenile SpA had active sacroiliitis. Of those subjects with active changes on MRI, 7 of 8 (88%) also had evidence of erosions or sclerosis. Five children (13%) with juvenile SpA and 1 control (7%) had nonperiarticular bone marrow edema. Of the subjects with active sacroiliitis, only 3 (38%) reported a history of back pain or tenderness on palpation of the sacroiliac joints. The positive and negative predictive values of clinical examination features and back pain for detection of sacroiliitis were low. The estimated probability of having sacroiliitis was 0.84 (95% confidence interval 0.40-1.00) in HLA-B27-positive patients with an elevated C-reactive protein (CRP) level.

CONCLUSION:
Active sacroiliitis by MRI is common at diagnosis in juvenile SpA and is frequently asymptomatic. Children who are HLA-B27-positive and have elevated CRP levels have the highest probability of sacroiliitis.
07-28-2017, 05:25 PM   #42
Jelly loves Peanut butter
 
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My son had his MRI Wednesday and it went pretty well. Got a message from the rheumatologist today and MRI is showing mild sacroiliac joint inflammation. Does this confirm then that he has juvenile spondyloarthritis? I have a follow up appt. on Sept. 1 to discuss everything. His message said this would suggest he would do better on a medication like humira or remicade, but he also said findings were relatively mild. Also his sed rate this week is 56 and CRP 1.2. From what I've read here, it sounds like most are on humira. Is there any benefit to one over the other?
07-28-2017, 05:41 PM   #43
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It does confirm JSpA. The rheumatologist will probably explain it to you at the next visit. I would personally put my kiddo on a biologic because though it is mild now, it may get worse.

With both my girls, we waited to put them on biologics for nearly a year after diagnosis and really, really regretted it later. My younger daughter was also under-treated for a while - her JSpA was very aggressive, but her rheumatologist didn't treat it as such. She went from having 6 joints involved to having nearly every single joint involved in 8 months.

I can't tell you how much we regret now not treating her more aggressively when she was younger. We should have gotten a second opinion and switched her biologic. Instead we just kept hoping her meds would kick in and she would feel better.

The damage done to her joints (mostly SI joints, hips and right knee) is permanent. It will never go away. Her joints will always hurt.

That is, of course, the worst case scenario but it's also a real possibility. 6MP will NOT treat his arthritis. You wouldn't leave his Crohn's untreated, right? The same way, you should not leave his JSpA untreated.

There is not much difference in terms of efficacy between Humira and Remicade. Just that Remicade is an infusion - an IV usually every 6-8 weeks (though it can be given as often as every 4 weeks). Kids tend to find Remicade easier to deal with.

The infusion is about 2-2.5 hours, but the whole thing will take about 4 hours. It means a day off from school (or half a day). My girls didn't mind Remicade at all - they loved the chance to miss school, watch TV and nap. The nurses fuss over the kids and most kids love that .

Humira is a shot - every 2 weeks or every week, depending on what the kiddo needs. It really burns. It's very convenient, but it is painful. We used ice and distraction (TV) and dessert after the shot to help, but kids do tend to have a hard time with it. It depends on the kid - for some it is very traumatic. My girls absolutely hated it at first, but once they figured out that it was helping, they quickly got used to it.

But with my older daughter, we had many tears when she first started it. My younger one didn't like it, but no tears with her.

There are ways to make it less painful - such as adding Lidocaine to the shot.

You know your son best - you can probably figure out what would be harder for him. I'd guess Humira because it really does burn and it's more frequent.

It also will depend on what your doctor would want. That is a pretty high ESR - I'm kind of surprised he is not pushing harder for Humira/Remicade. Kids with JSpA often do not have elevated inflammatory markers and the prognosis tends to be more severe if they do.

Good luck with whatever you choose!
07-28-2017, 05:42 PM   #44
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Sounds like JSpA
Remicade or humira work equally well for JSpA and Crohns
Remicade has an advantage of being weight dependent
So you can keep the same dosage as the kiddo grows and gains weight
5mg/kg
It's an infusion once every 6-8 weeks and only has an iv stick for pain

Most kids enjoy it

Humira is every 14 days but as close as every 5 days
The injection is given at home by you
The injection burns like a wasp sting per Ds
Our rheumo has us add lidocaine to less the burn
But it only comes in 40 mg syringe for older kids and adults
So while Ds was 75 lbs he got 40 mg and still gets 40 mg at 120 lbs
Only option is to increase the timing of the shot from 1 every two weeks slowly to see what works
Ds switched to every 10 days
Then every 7 days
And now every 5 days
He has been on humira for over 5 years though

He was on Remicade for 8 months
He had two mild allergic reactions though (he is an allergic kiddo )
So no more Remicade

Glad your on the right path
07-28-2017, 07:53 PM   #45
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Thank you MLP and Maya. That gives me a lot to think about. I am wondering though about the 6MP as to when to stop taking it once a biologic is started. Are there any side effects when stopping 6MP? Is JSpa like Crohn's where it needs to be treated even when in remission?

If you don't mind me asking Maya, why did your girls stop taking remicade? And MLP, what kind of allergic reactions did your son experience?

I am leaning more towards remicade because I don't think my son could handle the shot frequency but I do want to talk with his GI (and rheum) and get her opinion on this as well.

Thanks again for your caring and knowledge! I am so grateful and appreciative!
07-28-2017, 08:04 PM   #46
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Another question, are the sacroiliac joints considered part of the spine? I reread the rheum message and he referred to it as "spine arthritis."
07-28-2017, 08:24 PM   #47
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Remicade eventually stopped being effective for both of them. For some people biologics last a long time - years and years. Others build up antibodies quickly and they stop working.

My younger daughter was on Remicade 3 separate times (because we ran out of options). Generally they try not to use Remicade more than once because of the risk of allergic reactions. It is made with mouse protein which makes the risk a little higher than the risk with Humira (which is humanized).

MLP can explain it better than I can .

The sacroiliac joints are where the spine meets the pelvis. They're considered "axial" arthritis, or "spinal arthritis." Often peripheral arthritis with Crohn's (so joints other than the spine - the knees, ankles, elbows etc.) will flare when the Crohn's flares. So often (but not always) treating the Crohn's can treat the peripheral arthritis.

This isn't always true with peripheral arthritis - sometimes it does flare independently of Crohn's and then has to be treated independently - but it is often true.

But axial arthritis is different. It tends to flare independently. So even if his Crohn's is under control with 6MP, his JSpA clearly is not if there is still inflammation.

JSpA does need to be treated when it's in remission. Some kids are able to discontinue meds and stay in non-medicated remission, but that's pretty rare. Mostly you just aim for medicated remission - remission while on the meds. Sometimes you can reduce meds if the kiddo is doing very well and is very stable, but it's unlikely that you can stop meds.

6MP could be continued with Remicade. It depends on the doc, they all have different protocols, but many doctors keep kids on either MTX or 6MP with a biologic to prevent them from building antibodies to the biologic.

Others do not. Generally, they would give the biologic time to kick in and once he is stable on it, reduce or stop the 6MP.

Some kids will flare when a med is taken away, and others won't. It's very individual. My older daughter, for example, is on Humira and MTX. Every year she decides she doesn't need MTX and convinces her rheumatologist to let her try to reduce it.

Once she tried to stop it altogether and it was a disaster - she flared and immediately had to go back right on it.

This year she was able to reduce it for a few months, but her knees have been swollen, so her rheumatologist just put her back on the original dose (15 mg).

I would talk to both your rheumatologist and GI and see what they recommend. I think Remicade is probably easier on the kiddo and there is also a lot more flexibility with dose.
07-28-2017, 09:36 PM   #48
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Ds had anaphylaxis prior to starting remicade from Foods
So the docs told us given remicade is murine protein (mouse)
The risk was high
First reaction his throat was scratchy and itchy


Ds had mouth burning /tongue tingling (second reaction with iv steroids prior )
A dermo confirmed he has lots of enlarged bumps covering his tongue from the reaction a day later

They will show you the warning signs for anaphylaxis

Ds also reacts to iv contrast due /barium etc
With rashes and hives

So he isn't a good example

Symptoms
Anaphylaxis symptoms occur suddenly and can progress quickly. The early symptoms may be mild, such as a runny nose, a skin rash or a "strange feeling." These symptoms can quickly lead to more serious problems, including:

Trouble breathing
Hives or swelling
Tightness of the throat
Hoarse voice
Nausea
Vomiting
Abdominal pain
Diarrhea
Dizziness
Fainting
Low blood pressure
Rapid heart beat
Feeling of doom
Cardiac arrest
People who have had a severe allergic reaction are at risk for future reactions. Even if your first reaction is mild, future reactions might be more severe. That's why it's important to carry self-injectable epinephrine if you are at risk, and 911 should be dialed in the event of a very serious reaction.

Understanding anaphylaxis and the things that can trigger this severe allergic reaction will help you manage your condition.

From
http://acaai.org/allergies/anaphylaxis
09-01-2017, 06:38 PM   #49
Jelly loves Peanut butter
 
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We saw the rheumatologist today and as expected my son will be starting remicade, just have to wait for the infusion center to call so we can schedule. I asked about the 6 mp and he said he will keep that for now with plans to stop it once the remicade is therapeutic. Also wants him to be on methotrexate once he is off 6mp. After the first infusion then again at 2 weeks, the schedule will be every 4 weeks . I thought it would be every 8 weeks but he said for juvenile arthritis it is every 4, IBD is every 8.

So as expected my son had some tears but seemed ok by the end of our visit.😊

Much appreciation and thanks to Maya and MLP for guiding us in the right direction. 💜💜💜I will keep you updated with my son's progress once we get started with treatment .
09-01-2017, 06:49 PM   #50
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It is given more frequently with JIA. Sorry, should have warned about that. It's usually every 6 weeks to begin with and then can be moved up to every 4 or every 5.

But with my daughter, we never got to 6 weeks - we went straight to every 4 since she was not doing well. We were able to move her infusions out to every 5 weeks over time and then when she flared again, we went back to every 4.

So it may change. Hopefully it will change. But even every 4 is not so bad - once he has had a few and he is used to them, they won't be so scary.

Things to make sure on infusion day -
He is hydrated, so the IV is easier to put in

You can ask for numbing cream or taking Buzzy (you can buy Buzzy online before the infusion and take it with you)

If they have trouble finding a vein, a hot pack will help make them pop out

Take some entertainment for him - ipad or book or something
At our infusion center, each kiddo has a little TV, but not every infusion center has that. You also probably want to take headphones.

Our infusion centers always provided simple snacks - like saltines or graham crackers and juice, but you may want to take some with you.

Once the IV is in, it is very easy. Just long. My girls quickly began to look forward to the infusions - they made them feel better, the nurses fussed over them and they got to miss school and nap and watch TV for half a day .

Hang in there and good luck! Keep us updated!
09-01-2017, 07:21 PM   #51
Jelly loves Peanut butter
 
Join Date: Nov 2016
Location: Southern California

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Thank you for all the great suggestions. Again can't tell you how much I appreciate all you have helped us with this!
09-01-2017, 07:23 PM   #52
Maya142
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No problem!! Hope it all goes smoothly. How is he feeling now? How are his joints doing?
09-01-2017, 07:30 PM   #53
pdx
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Location: Portland, Oregon

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Hope that the infusions go well, and that Remicade works quickly for your son!
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
09-01-2017, 08:27 PM   #54
Jelly loves Peanut butter
 
Join Date: Nov 2016
Location: Southern California

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He is doing pretty well. His right knee and foot mostly bother him but lately just with aches, not really needing tylenol or leg wraps. No GI symptoms since January. He still has this head tic 😟thing. He still gets tired out and needs to sit down a lot . We were just on vacation and did a lot of walking and he would sit down every chance he could. His sed rate continues to be high, 48 and crp 1.2. Thinking about everything is sometimes overwhelming but I am happy to be on the right path.😄
09-01-2017, 08:35 PM   #55
Maya142
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Glad he's not in too much pain. But sometimes kids who are used to pain/fatigue forget what "normal" feels like. Then when you start a biologic, it's a miraculous different.

For foot pain, we got a foot spa from Amazon. It's worth its weight in gold!! My daughter uses it all the time!! Also make sure he is wearing good, supportive sneakers (my girls used to wear flip flops all summer which did not help anything).

For knee pain, an OTC knee sleeve can help. You can also try ice and heat, when it gets bad.

You can contact your local arthritis foundation office to get him a JA Power Pack:http://www.kidsgetarthritistoo.org/r...power-pack.php

Comes with good info and also a teddy bear that can be heated and put on sore joints.

Once you start Remicade, you will find a new "normal" and things will become easier.
09-18-2017, 03:50 PM   #56
Jelly loves Peanut butter
 
Join Date: Nov 2016
Location: Southern California

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My son was scheduled to have his first remicade infusion 9/22 but now it is postponed until he gets a hepatitis B booster. How long after the booster do you typically wait to start remicade?
09-18-2017, 07:38 PM   #57
Maya142
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We had to delay biologics to do a chicken pox booster for my older daughter but that is a live vaccine, so had to wait 6-8 weeks or so.

Not sure about Hepatitis B though...If I remember correctly, it's not a live vaccine, so you shouldn't have to wait too long.
09-18-2017, 07:59 PM   #58
Jelly loves Peanut butter
 
Join Date: Nov 2016
Location: Southern California

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Thank you again Maya! Also do you know if oral vs. injectable methotrexate is better? Gastro wants injection but rheumo said pill.
09-18-2017, 08:02 PM   #59
my little penguin
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Up to 20 mg both are absorbed the same
I think it depends on the kid
Some do great with the shot in terms of side effects
Others do better on the pill(Ds does great on the pill )

GI tends to use shots and rheumo tend to use pills

Good luck
09-18-2017, 08:06 PM   #60
Jelly loves Peanut butter
 
Join Date: Nov 2016
Location: Southern California

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Thank you MLP!
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Crohn's Disease Forum » Parents of Kids with IBD » 10y. old son newly diagnosed, sed rate high for months
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