Hello, my son L was diagnosed at age 9 in Sept. 2016 with Crohn's. He had no symptoms prior when he suddenly developed diarrhea and pretty bad foot pain. My initial visit to the doctor was actually for his foot. It hurt so bad he would cry at night, as well it was very swollen. His X-ray was normal and so the doctor thought he might have strained it, although he had done nothing to injure it and it was not bruised(only had diarrhea 2 days at this point so I didn't even mention it). I returned the following week d/t worsening diarrhea and subsequent stool specimen showed c. dificil. After treating with flagyl for 2 weeks with no improvement, MD repeated stool test and added labs. Fecal calprotectin was 440, sed rate 66, CRP 16.0. Over the next few months L suffered with leg pain, diarrhea, weight loss, nausea,and abdominal pains. We were referred to a pediatric GI during this time and L was diagnosed with moderate Crohn's after EGD and colonoscopy in Sept. 2016. He was treated with prednisone taper over 2 months and started 6-MP(low dose until TPMT genotype was done). Currently he is on 6-MP 50mg alternating with 75mg daily. He has been doing quite well since December although still has leg pain(mostly foot but sometimes knee or hip) which MD called "arthralgias" related to to Crohn's. Sorry for the long story but my question is about his sed rate. It has been elevated since July (latest readings 58,48,35,47). CRP is ok (last few 1.20.0.90,0.80,1.00). I asked the pedi GI in February about this if maybe it was still up because of his leg pains and she said no,but it could take awhile to come down. Wondering if anyone else has had this happen and can give me a timeframe when it will return to normal? I worry every day about L and would very much appreciate any input.
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10y. old son newly diagnosed, sed rate high for months
- Thread starter Jelly loves Peanut butter
- Start date
If he is having arthralgia he needs seen by a rheumatologist
Crohns has Spondyloarthapathy (arthritis) associated with
Kids with pain need to be followed by an rheumo to make sure they don't develop arthritis later with it
Ds started with leg pain and later developed JSpA
Sed rate does not take months to go to normal
A week or two maybe but not months
Can you get a second opinion at a large pediatric ibd center ?
Has your child tried een (exclusive enteral nutrition) formula only no food ?
The top three in the country are children's of Philadelphia
Boston children's
Cincinnati children's
Good luck
Crohns has Spondyloarthapathy (arthritis) associated with
Kids with pain need to be followed by an rheumo to make sure they don't develop arthritis later with it
Ds started with leg pain and later developed JSpA
Sed rate does not take months to go to normal
A week or two maybe but not months
Can you get a second opinion at a large pediatric ibd center ?
Has your child tried een (exclusive enteral nutrition) formula only no food ?
The top three in the country are children's of Philadelphia
Boston children's
Cincinnati children's
Good luck
Are his 6-months levels therapeutic??
Ds ran into trouble with that when his levels got therapeutic
His liver enzymes went up
So after 8 months we stopped it
He wa dx at age 7
That was almost 7 years ago now
It does get better and easier with the right meds
He is on humira and mtx for Crohns and juvenile spondyloarthritis (JSpA)
Ds ran into trouble with that when his levels got therapeutic
His liver enzymes went up
So after 8 months we stopped it
He wa dx at age 7
That was almost 7 years ago now
It does get better and easier with the right meds
He is on humira and mtx for Crohns and juvenile spondyloarthritis (JSpA)
. His Levels are almost therapeutic. We just had an increase in dose so I will see at the next lab draw.
Thank you MLP for replying. We go to Children's Hospital in San Diego and it does have an IBD center but maybe I will ask to see a rheumatologist. L has not been on EEN but he was drinking 3-4 boost a day when he was diagnosed. Our next appt is in June so I'll ask again about the sed rate. Thank you again!
Hi and welcome.
I agree about seeing a rheumatologist. He could have arthritis which is often associated with Crohn's Disease - Spondyloarthritis. My younger daughter has both Crohn's and Spondyloarthritis and she started out with knee and foot pain.
If 6MP is working for your son, his ESR should not be high. Has he had a Fecal Calprotectin recently? If you just increased the dose to get to therapeutic levels then it may take a little longer.
If in a couple months his inflammatory markers are still high, then it's probably time to think about a change in treatment. Methotrexate or biologics are options as maintenance meds.
If he does have arthritis, then you may also have to change meds, but the first step is seeing a rheumatologist. A rheumatologist is the best person to ask about differentiating between arthritis (inflammation in the joint) or arthralgia (joint pain). A GI may not be able to pick up subtle signs of inflammation in the joints.
Good luck!!
I agree about seeing a rheumatologist. He could have arthritis which is often associated with Crohn's Disease - Spondyloarthritis. My younger daughter has both Crohn's and Spondyloarthritis and she started out with knee and foot pain.
If 6MP is working for your son, his ESR should not be high. Has he had a Fecal Calprotectin recently? If you just increased the dose to get to therapeutic levels then it may take a little longer.
If in a couple months his inflammatory markers are still high, then it's probably time to think about a change in treatment. Methotrexate or biologics are options as maintenance meds.
If he does have arthritis, then you may also have to change meds, but the first step is seeing a rheumatologist. A rheumatologist is the best person to ask about differentiating between arthritis (inflammation in the joint) or arthralgia (joint pain). A GI may not be able to pick up subtle signs of inflammation in the joints.
Good luck!!
I agree with the others. His sed rate should not remain elevated for months. Either the 6MP is not working or something else is going on. Hope you get in with a rheumo quickly
Just had labs again, CRP 1.10 and sed rate 66. I talked with my GI doc and she put in a referral for rheumatology so i will keep you posted. Thank you again for the advice.
Glad he is seeing a rheumatologist!! Let us know how it goes.
I also wanted to add, in kids, negative x-rays don't necessarily mean no arthritis. X-rays only show damage, not inflammation. It takes a long time for damage to show up on x-rays - years, not months - so early in the disease, you would expect negative x-rays.
An MRI is more accurate because it will show inflammation and damage.
I also wanted to add, in kids, negative x-rays don't necessarily mean no arthritis. X-rays only show damage, not inflammation. It takes a long time for damage to show up on x-rays - years, not months - so early in the disease, you would expect negative x-rays.
An MRI is more accurate because it will show inflammation and damage.
We are still waiting to see the rheumatologist but my GI doc put in orders for MRI sacral, urinalysis, HLA-B27, rheumatoid factor (she contacted rheumo and this was their recommendation). I understand what the blood tests are looking for but why the urinalysis and MRI? His aches are always feet, ankles, knees, hips, and lately elbows; not all at the same time, tends to be sporadic. His back has never bothered him. Also if any of these do show something then what treatment would I expect? He is on 6-MP and it is controlling his abdominal symptoms so well, I would not want to chance replacing that with something else.
So sacroiliitis is VERY common in spondyloarthritis. That is why the MRI. It is pretty standard to do an MRI with juvenile spondyloarthritis, but generally they would examine the child first and see if he/she has back complaints - morning stiffness, pain, limited mobility. That said, it is possible to have sacroiliitis without back complaints, especially in kids and it is good to check.
It can only be treated by a biologic, so if he does have it, he'd have to switch to one. It is very important to treat spondyloarthritis, because it can cause a lot of damage. My husband and my two daughters have it - both girls have been on biologics for years. However, they both have damaged in their SI joints and hips - something we may have been able to prevent if we had started biologics earlier.
My husband has NEVER been on biologics (they weren't available when he was diagnosed) and he has had 5 hip replacements, and has a damaged spine and ankle.
So the goal is to treat the inflammation, just like with IBD, and prevent damage.
The other joints that are involved are often the feet, ankles, knees and hips and even elbows - so it makes a lot of sense that they are testing for all this. HLA B27 is a gene associated with JSpA (juvenile spondyloarthritis), though you can be negative and have JSpA.
I'm not sure why the urinalysis is necessary. RF factor is common in a different type of arthritis - polyarticular juvenile idiopathic arthritis, which is less likely to be associated with IBD. In JSpA, RF will be negative or low.
The rheumatologist can examine his joints and determine if there is inflammation. That is hard to do with the SI joints since they are so deep in (but easy to do with knees, feet, ankles etc) which is another reason for the MRI.
My girls had MRIs soon after they saw their pediatric rheumatologist the very time. It is very standard.
Hang in there!!
It can only be treated by a biologic, so if he does have it, he'd have to switch to one. It is very important to treat spondyloarthritis, because it can cause a lot of damage. My husband and my two daughters have it - both girls have been on biologics for years. However, they both have damaged in their SI joints and hips - something we may have been able to prevent if we had started biologics earlier.
My husband has NEVER been on biologics (they weren't available when he was diagnosed) and he has had 5 hip replacements, and has a damaged spine and ankle.
So the goal is to treat the inflammation, just like with IBD, and prevent damage.
The other joints that are involved are often the feet, ankles, knees and hips and even elbows - so it makes a lot of sense that they are testing for all this. HLA B27 is a gene associated with JSpA (juvenile spondyloarthritis), though you can be negative and have JSpA.
I'm not sure why the urinalysis is necessary. RF factor is common in a different type of arthritis - polyarticular juvenile idiopathic arthritis, which is less likely to be associated with IBD. In JSpA, RF will be negative or low.
The rheumatologist can examine his joints and determine if there is inflammation. That is hard to do with the SI joints since they are so deep in (but easy to do with knees, feet, ankles etc) which is another reason for the MRI.
My girls had MRIs soon after they saw their pediatric rheumatologist the very time. It is very standard.
Hang in there!!
So HLA B27 and rheumatoid factor were both negative. Also latest sed rates 48 and CRP 1.50, fecal calprotectin 25. Had a rheumatology consult and he wants to wait and see what the MRI sacral shows which we finally got insurance approval for so I will call this week for that. Of course I explained the history of everything that has been going on but my son was feeling good that day and showed no signs of inflammation during the examination. We did talk about possibly changing his 6mp to methotrexate if the MRI showed inflammation. So for now we will wait for the MRI.
So technically, MTX does not work well for SI joint inflammation or spine inflammation. It works very well for peripheral arthritis - ankles, knees, fingers, elbows - but not axial (spinal) arthritis (including the SI joints).
Rheumatologists typically do not use MTX if the SI joints are involved. We went straight from NSAIDs (this was prior to my daughter's Crohn's dx) to biologics. Our pediatric rheumatologist (and the second opinion rheum we saw) said that MTX would not have helped because the SI joint inflammation was the major problem.
That said, some pediatric rheumatologists do still try it, but it has become much more common to go straight to a biologic if there is sacroiliitis. There is LOTS of research to support going to biologics if there is SI joint inflammation. We went straight to Humira for both girls.
It does sound like there is inflammation somewhere, so hang in there. Getting an arthritis diagnosis can be tough and can take a while.
Hope the MRI goes well and you have some results soon.
Rheumatologists typically do not use MTX if the SI joints are involved. We went straight from NSAIDs (this was prior to my daughter's Crohn's dx) to biologics. Our pediatric rheumatologist (and the second opinion rheum we saw) said that MTX would not have helped because the SI joint inflammation was the major problem.
That said, some pediatric rheumatologists do still try it, but it has become much more common to go straight to a biologic if there is sacroiliitis. There is LOTS of research to support going to biologics if there is SI joint inflammation. We went straight to Humira for both girls.
It does sound like there is inflammation somewhere, so hang in there. Getting an arthritis diagnosis can be tough and can take a while.
Hope the MRI goes well and you have some results soon.
Thanks Maya! I will let you know results for the MRI soon.
My rheumatologist asked the radiologist to look at my son's MRE abdomen from October 2016 to see if it included the SI joints and it did. The revised report was "subtle patchy multifocal areas of signal abnormality centered along the sacroiliac joints bilaterally, predominantly along the sacral side and involving the upper portion of the joints, findings likely reflect sacroiliac arthropathy." He still wants to have another MRI that is scheduled for July 26 and said depending on that may want to switch him to humira.
I'm not sure what to think of all this. Does he really need another MRI now that the October MRI had these findings? Is there any other options for medications where we can keep the 6MP and add something if necessary?
If he does have to switch to humira then how often is that given? I just feel so stressed with worry at the thought of the Crohn's symptoms returning if we stop 6MP. Any answers or advice are appreciated!
I'm not sure what to think of all this. Does he really need another MRI now that the October MRI had these findings? Is there any other options for medications where we can keep the 6MP and add something if necessary?
If he does have to switch to humira then how often is that given? I just feel so stressed with worry at the thought of the Crohn's symptoms returning if we stop 6MP. Any answers or advice are appreciated!
So it does sound like active inflammation in his SI joints. 6MP will not help with that but a biologic like Remicade or Humira will. Humira is given once every two weeks. For IBD, there is a loading dose - 4 shots on day 0, 2 shots on day 15 and 1 shot every two weeks (for maintenance).
Your best bet to get the joint pain under control is a biologic. He can stay on 6MP while on a biologic or they could stop it. Biologics are typically MORE effective than 6MP, so his Crohn's should stay under control. They may also keep him on 6MP till the biologic kicks in and then slowly take him off it.
As for the MRI - it will give you more accurate info, since it will be targeted at the SI joints. It won't hurt and it might help. I know it's a pain - my kiddo has had about 20.
I would expect a juvenile spondyloarthritis or enthesitis related arthritis diagnosis as soon as you have the results of the MRI. Sorry
- I know it's tough to hear your kiddo has one more issue but the good news is that it can be treated.
Both my girls did well on Humira- my older daughter is still on it.
Your best bet to get the joint pain under control is a biologic. He can stay on 6MP while on a biologic or they could stop it. Biologics are typically MORE effective than 6MP, so his Crohn's should stay under control. They may also keep him on 6MP till the biologic kicks in and then slowly take him off it.
As for the MRI - it will give you more accurate info, since it will be targeted at the SI joints. It won't hurt and it might help. I know it's a pain - my kiddo has had about 20.
I would expect a juvenile spondyloarthritis or enthesitis related arthritis diagnosis as soon as you have the results of the MRI. Sorry
- I know it's tough to hear your kiddo has one more issue but the good news is that it can be treated.Both my girls did well on Humira- my older daughter is still on it.
Thank you Maya! You always have great information and are so knowledgable! My husband has asked me if you are a doctor When my son first started having problems last July, I found this forum and have gained so much knowledge being able to read through all the threads and everyone elses experiences. I never knew how much I didn't know. Thanks again and I will wait for the MRI.
When my son first started having problems last July, I found this forum and have gained so much knowledge being able to read through all the threads and everyone elses experiences. I never knew how much I didn't know. Thanks again and I will wait for the MRI.
:lol: Nope, just a mom. Both my daughters were diagnosed with JSpA as teenagers and my husband has AS (both girls have now progressed to AS).
Please feel free to ask any questions or message me any time.
The Humira shots do hurt - they burn. That was the worst part of Humira for my girls (they had no side effects). It's the actual medication that burns going in and it hurts enough that AbbVie is actually changing the formulation of Humira to take out the burning preservative (citric acid). The new formulation is available in Europe but not the US yet. It's supposed to be out in the US this summer so we are keeping our fingers crossed.
We iced before the injections and did them while watching TV so my girls were distracted. We also iced after them and the girls got a reward (usually dessert - something with chocolate ) after the shot. We also used Buzzy which helps a little but not a lot.
Please feel free to ask any questions or message me any time.
The Humira shots do hurt - they burn. That was the worst part of Humira for my girls (they had no side effects). It's the actual medication that burns going in and it hurts enough that AbbVie is actually changing the formulation of Humira to take out the burning preservative (citric acid). The new formulation is available in Europe but not the US yet. It's supposed to be out in the US this summer so we are keeping our fingers crossed.
We iced before the injections and did them while watching TV so my girls were distracted. We also iced after them and the girls got a reward (usually dessert - something with chocolate
) after the shot. We also used Buzzy which helps a little but not a lot.
I wanted to add - some pediatric rheumatologists will prescribe lidocaine to add to the shot. That helps a lot with the burning. We haven't tried it but I have heard from other JIA parents that it works well.
I'll tag my little penguin since her son also has JSpA and is on Humira. She has used Lidocaine with Humira for years.
I'll tag my little penguin since her son also has JSpA and is on Humira. She has used Lidocaine with Humira for years.
Thank You
I also wanted to add - the abnormal signal means inflammation. It doesn't mean there is permanent damage yet (the report would show erosions if there was). That's really good - the goal is to get this under control quickly, like you would Crohn's.
For pain relief - ice and heat can help a lot. One of my daughters prefers ice, the other heat. It doesn't matter which you use (or both) - whatever works for your kiddo.
For foot pain, soaking his feet in a bucket of warm water should help. You can also get a "foot spa" on Amazon. They're not too expensive. We got one for my younger daughter and she uses it ALL the time - it's honestly worth its weight in gold.
Snuggables has stuffed animals that can be heated and put on a sore joint: http://www.snuggables.net/plush-stuffed-animals
My daughters are young adults now, but still love them!
Voltaren gel is also a good option for pain relief - it's an NSAID but since it's topical not much is absorbed and it shouldn't bother his gut. The rheumatologist can prescribe it.
Good luck!! Keep us updated!
For pain relief - ice and heat can help a lot. One of my daughters prefers ice, the other heat. It doesn't matter which you use (or both) - whatever works for your kiddo.
For foot pain, soaking his feet in a bucket of warm water should help. You can also get a "foot spa" on Amazon. They're not too expensive. We got one for my younger daughter and she uses it ALL the time - it's honestly worth its weight in gold.
Snuggables has stuffed animals that can be heated and put on a sore joint: http://www.snuggables.net/plush-stuffed-animals
My daughters are young adults now, but still love them!
Voltaren gel is also a good option for pain relief - it's an NSAID but since it's topical not much is absorbed and it shouldn't bother his gut. The rheumatologist can prescribe it.
Good luck!! Keep us updated!
Hugs
Ds has JSpA as well
He is on humira and mtx for Crohns and JSpA
We add lidocaine to the humira syringe
This lowers the amount the medicine burns
The doc has us draw up the lidocaine separately and mix it in the humira syringe
We use dum dum lollipops
Humming
Difficult questions to answer
Movies
Repeating a happy image (such as puppies)
Counting
After 5years Ds doesn't really mind the humira shots much at all
Glad your Ds is getting an MRI
Good luck
Second the foot spa
We got a larger one from Brookstone since Ds is 13 and the odds of having larger feet are pretty good
He using it multiple times a week and sometimes multiple times a day
We make sure he can swim a lot in warm water
And use thermabath (hot paraffin wax ) for ds hands
Ds has JSpA as well
He is on humira and mtx for Crohns and JSpA
We add lidocaine to the humira syringe
This lowers the amount the medicine burns
The doc has us draw up the lidocaine separately and mix it in the humira syringe
We use dum dum lollipops
Humming
Difficult questions to answer
Movies
Repeating a happy image (such as puppies)
Counting
After 5years Ds doesn't really mind the humira shots much at all
Glad your Ds is getting an MRI
Good luck
Second the foot spa
We got a larger one from Brookstone since Ds is 13 and the odds of having larger feet are pretty good
He using it multiple times a week and sometimes multiple times a day
We make sure he can swim a lot in warm water
And use thermabath (hot paraffin wax ) for ds hands
CarolinAlaska
Holding It Together
I second that Humira should help the IBD and his joint issues. Don't worry about that!
Another arthritis kiddo here!
You've been given great advice but i wanted to add that biologics have done wonders for my kid.
She was dx with over 20+ joints involved at the age of 4.
She was put on a biologics (remicade now)
4 years later and still no permanent damage.
I hate that she needs these meds but so happy that it works for her.
Hugs
You've been given great advice but i wanted to add that biologics have done wonders for my kid.
She was dx with over 20+ joints involved at the age of 4.
She was put on a biologics (remicade now)
4 years later and still no permanent damage.
I hate that she needs these meds but so happy that it works for her.
Hugs
I was diagnosed with Crohn's at 9 years old. I also had arthritis. My parents had no idea what to do emotionally while going through all of this. My parents read all the literature they could find, went to support groups for parents of children with Crohn's--and that was in 1995. I remember seeing how hard it was on my parents with me being so sick as a child and into my teens. My advise to you is to take care of yourself and seek support for parents who are in your situation. It greatly benefited my parents and helped them understand everything I was going through.
My son started doing this head nodding thing for the past few days. At first I thought he was doing it on purpose but now it seems like he just does it involuntarily and I don't even think he knows he's doing it. He randomly jerks his head down as if he is nodding, sometimes once and sometimes a few in a row. I videod him doing it and am sending it to my doctor tonight and plan to call in the morning. He has no other neurological signs. Can this be some sort of vitamin deficiency or electrolyte imbalance ? He's been doing great as far as his GI system goes so he really shouldn't have a vitamin or electrolyte problem. Has anyone else experienced this?
Just 6MP and vitamin D.
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
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
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.
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!!!
!! 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!!!
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.
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.
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:frown:
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:frown:
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.
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.
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.
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.
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!!:dance:
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/
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.
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/
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.
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?
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!
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!
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
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
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!
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!
Another question, are the sacroiliac joints considered part of the spine? I reread the rheum message and he referred to it as "spine arthritis."
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.
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.
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
From
http://acaai.org/allergies/anaphylaxis
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
From
http://acaai.org/allergies/anaphylaxis
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 .
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 .
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!
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!
Thank you for all the great suggestions. Again can't tell you how much I appreciate all you have helped us with this!
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.
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.
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/resources/ja-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.
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/resources/ja-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.
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?
Thank you again Maya! Also do you know if oral vs. injectable methotrexate is better? Gastro wants injection but rheumo said pill.
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
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
Thank you MLP!
It depends on the kid. Our rheumatologist preferred shots because she said they were absorbed better and in her experience, kids had fewer side effects with the shots.
My girls had trouble with the pills even at a lower dose - they got mouth sores and were very nauseous and dizzy.
For us, switching to shots helped a LOT. But for others on the forum, I have read that their kids did better on pills!
Also, studies actually show that the shots are not any better in terms of side effects - the pills are just as good. But the shots are easier to absorb, especially in an IBD kiddo.
My older daughter is still on 15 mg of MTX (0.6 mL) by injection. She occasionally takes Zofran with it for nausea, but doesn't usually need it.
At higher doses, generally shots are used over pills.
My girls had trouble with the pills even at a lower dose - they got mouth sores and were very nauseous and dizzy.
For us, switching to shots helped a LOT. But for others on the forum, I have read that their kids did better on pills!
Also, studies actually show that the shots are not any better in terms of side effects - the pills are just as good. But the shots are easier to absorb, especially in an IBD kiddo.
My older daughter is still on 15 mg of MTX (0.6 mL) by injection. She occasionally takes Zofran with it for nausea, but doesn't usually need it.
At higher doses, generally shots are used over pills.
My daughter needed a tdap and meningitis vaccine before she started Remicade. Her first Remicade infusion was given just a few days later. (Neither of those is a live vaccine.) I hope your son won't have to wait too long.
We have always done oral methotrexate, just because my daughter really hates shots. I've heard that the methotrexate shot is an easy one, though, for most kids.
We have always done oral methotrexate, just because my daughter really hates shots. I've heard that the methotrexate shot is an easy one, though, for most kids.
Thank you PDX!
Pdx is right - the shot isn't bad. It's a teeny tiny needle - a very thin one too. The MTX does not burn when going in (but make sure to get the MTX with preservatives)- it's nothing like Humira shots. My daughters learned to do it by themselves when they were 13 and 15, I think.
My older daughter is still on MTX. She says if she either ices before the shot or uses Buzzy, she can't feel the poke at all.
With younger kids, you can ask them questions during the shot to distract them.
My older daughter is still on MTX. She says if she either ices before the shot or uses Buzzy, she can't feel the poke at all.
With younger kids, you can ask them questions during the shot to distract them.
My son started methotrexate and has had two doses of remicade and sed rate is now down to 24...best it's been in over a year and he is feeling great! Sending my sincere appreciation to Maya and MLP for guiding us in the right direction!:ghug:
Hi Maya, I am surprised after two remicade treatments his legs are feeling great, having no pain at all! He had his first infusion, then again after two weeks. Now they will be every 4 weeks. We even did the Crohn's walk on Sunday and his legs didn't bother him at all!
That's such great news
Love
when a med truly works
Great job!!
Love
when a med truly works Great job!!
Just an update for my son...had his 4th remicade infusion Friday and just got labs back today. ESR is NORMAL for the first time since July 2016!!:dusty: He is doing great with no gut or joint issues!! Many thanks to all the parents on this forum for all the support and great advice!
:dance:
:dusty:
That’s wonderful
News
Love hearing that !!!!
:dusty:
That’s wonderful
News
Love hearing that !!!!