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The Worried Mum's/Dad's/Carer's Club!

DustyKat

Super Moderator
Hey Julie...:ghug:

I am so sorry to hear that your girl is not doing so well, bless her. :heart:

How has she been getting on?

In my thoughts.

Dusty. xxx
 
Hi there, I am so worried that my 9 month old has crohns... I have it myself and so does my mum...Anyway hes been having recurrent constipation and for the past 2 weeks been screaming at night in pain and very windy. He did a few months ago have blood in his poo on 3 occasions.

can anyone share their experiences or what symptoms to look out for on a baby xx
 
Hi holly and Charlie,
Welcome to the forum. Given your history and mom's I think getting in touch with a pead. GI would be wise. I'm not saying he's has Crohn's. My Grace is 4 and much like your guy has suffered since birth. Constipation, belly pains, vomiting and blood in the stool has been some of her symptoms. BUT there's other bowel problems that a baby can have. A GI would be able to help figure out the mystery.

HUGS
 
My Grand daughter has been doing extremely well with the remicade. I just want to wish everyone a happy, healthy Holiday Season!
 
Hi,
I think this is the place I need to be. My daughter Grace was diagnosed with Crohns a year ago and after Pred and Pentasa was doing well until a liver biopsy 2 weeks ago confirmed she has PSC/AIH (he's not 100% which at the moment but thinks its an overlap syndrome of the two). The DR wants to start her on Imuran and another course of Pred. When I asked how long he said the Imuran would be forever. We haven't even told her yet because we know she will totally freak out. Even a blood test sends her into a panic attack and ends with us chasing her around the room and holding her down. What a strange and unwanted journey for us all this is! We are Australians living in Orlando, US if anyone knows of a support group here or who are the best Drs etc. I would be forever grateful. Has anyone used Vancomycin therapy instead of Imuran with a positive outcome?
Thanks Julie
 
Hi, Thanks for the info regarding Nemours. We would love to use there as we've heard such great things but our insurance isn't covered there unfortunately. They said they would be covered by UnitedHealth in the next two years so fingers crossed. Hope your daughter is doing well.
Thanks
Julie
 
We are headed to Montana Sunday to meet a new GI, have another colososcopy and MRE. We will be starting the anti M.A.P treatment.
I am worried about the colonscopy because she will only have the "twilight meds" and I am worried because she is emotionally shutting down. Being 15 is hard enough but she is almost giving up.
I have come back to our Crohns Forum to ask for support but to also know the best way to support her right now. I know i cant fix it all, I actually cant fix any of it, but she has all of my love and support.
thanks for listening
 

DustyKat

Super Moderator
Hey Julie :ghug:

The twilight meds they use for scoping shouldn’t be a problem. For the vast majority of people they are more than sufficient to put you under enough that you have no memory of the procedure being done.

It is such difficult age, bless her, not to mention the fact that the area the bowel is hardly the easiest area to talk about having issues with. :(

Would your daughter be open to making contact with other teens with Crohn’s?
Perhaps through the parents here, joining this or another forum herself, through CCFA, camps, Facebook, etc.

Sarah went through a very difficult period at around 17. It was nigh impossible to speak with her about anything let alone Crohn’s. She was angry, fed up and rebellious. It did pass but at the time the only way I found to handle it was to just listen to her venting without interruption, hold her if she would let me and above all else tell her I loved her and would always be there whenever she needed me no matter what. I didn’t pretend to understand what she was going through but did validate what she was feeling. it wasn’t an easy time and I did ask that the school psychologist start seeing her. The school organised it and although Sarah would say to me it made no difference I saw that it did.

Independent of the psychologist the GP was onto me big time about Sarah needing to speak to someone about her Crohn’s. I actually had a falling out with GP about it, I could well see where he was coming from but I knew Sarah better than he did and in our case I felt it was far better not to risk letting what lines of communication we still had open shut down. I made the decision that I would rather sacrifice the small stuff to ensure she would still come to me with the big stuff and it did work out that way thank goodness! Again that was our experience and may not work for others.

I so hope all goes with the appointment and your daughter is soon feeling good about things again. :ghug: Safe travels and good luck!

Dusty. xxx
 
Dusty
You sre so thoughtful. She will not reach out to others with crohns either. but somehow one young lady reached out to her. I am hoping it will be just what she needs. so glad to hear a good story in regsrds to the twilight meds. i read about it and almost called it off.... I hope you and your family are doing well. thank you so much. Julie
 

Tesscorm

Moderator
Staff member
I can't add to the advice Dusty gave. :) But just wanted to reassure you re the scopes - Stephen had his first scope with general anesthesia and his last scope with only 'twilight' - he was a bit nervous re the twilight but found that he had no problem at all - no pain, no memory, etc. Good luck!
 

DustyKat

Super Moderator
Twilight does have many advantages over a GA Julie, not the least of which is less risk and a significantly faster recovery time. I don’t know how things work in the US but here it is administered by an anaesthetist.

Dusty. xxx
 
Hi Hope345,
just wanted to find out what you knew about the Anti MAP treatment. We took our son to a doctor here in Sydney Australia and he wanted to start him on it. We decided against it at the time but I would be interested in finding out if it was the same procedures over in the states. Our son is 12 years old.

Hope everything went ok with your daughter.

James mum.
 
Add me to the list.... We're doing ok right now and my worry level is probably at its lowest since she was diagnosed.. That said, I can't help but look at her like a ticking time bomb. I know she's going to flare again, and it bothers me not knowing how long the good times will last. Is it going to be tomorrow? A week from now? A year from now? Will she never flare again? (ha!). For the longest time, bedtime caused me a lot of anxiety. We'd spend half the evening listening for her to cry or wimper or get p to use the toilet. We have since bought another baby monitor (after getting rid of ours nearly two years ago!), and I find it gives me a LOT of peace of mind knowing that I don't have to discern between a shifting house, or DS getting up to pee or her crying or whatever.
 

DustyKat

Super Moderator
Yeah, it’s hard not to wait for the other shoe to drop. Bloody Crohn’s! :voodoo:

We are in a very blessed state indeed back here but I still feel like we are living on borrowed time.

When Sarah was the only one diagnosed a lady told me about her sister’s story and it was identical to Sarah’s. Emergency surgery at 14 for an undiagnosed condition. Same area of the bowel too. As it is her sister is now in her 50’s and has never had a relapse! I grabbed hold of that hope and ran with it big time, hell I still do! But then…

My son was diagnosed. My kids mirror image each other with disease location and outcomes but I figure what are the chances of both my kids being as lucky as that lady? Suffice it to say I have visions of Lady Luck taking off down the road so fast that I can’t see her for the dust! :lol:

Good to hear that the monitor is easing the nights a little for you, good idea mum. :thumleft:

Dusty. xxx
 
Hi. Our 12 year old daughter was diagnosed yesterday. Just trying to absorb what it means but I think I'll need you guys to help over the next while as we'll have a ton of questions and not many avenues to turn down. Thanks for being here!!
 
Hi Coneheadis,

I'm sorry for the Crohn's diagnosis for your daughter. It is overwhelming, especially if you know very little about the disease like my husband and I. The Crohn's Forum has allowed me to gather a wealth of info from real people living with disease. My best advice is to do much research on your own and don't be afraid to get a second opinion.

Knowing where your daughter's disease is located and the severity will help determine a treatment approach. My daughter was diagnosied in March and she was seven years old. Her disease was located in multiple areas after much thought and discussion we decided to do Remicade. That is a biologic therapy which you go to a medical center and the medicine is infused through an IV. (Side note: Potential side effects will scare you.)Yesterday was her third round and so far she is doing wonderfully. We go back in eight weeks for her fourth infusion as well as a colonoscopy. The hope is that her body is responding and healing internally.

My daughter got sick on Dec 21, 2013 with the type A flu and from there her health never improved. She had a fever every day for three months and our lives were turned upside down trying to find an explanation for her illness. Fast forward six moths later and she has improved greatly! She is back to " a normal active eight year old." I have no idea what we have in store for the future as this disease isn't curable, but for now life is pretty good!

I wish your daughter all the best, stay encouraged, and take it one day at a time.

Sincerly,
~J
 
Hi Coneheadis,
Welcome to our forum. Sorry you had to find us but so glad you did. You should start a new thread introducing yourself and your daughter. I highly reccomend going over to the treatments section on the front page and looking at the different treatments used and getting familiar with them. That way you will be familiar with them when you speak to the doctor about options and what to expect. Keep us posted.
Kim
 
I am new here. My 18 year old daughter has Crohn's and has been trying different treatments which have worked for awhile then stopped. Her doctor is now going to put her on Imuran and I am freaking out. Possible side effects are blood cancer? We seem to have no choice here. When your child tells you "I don't want to die" what can I say.

The doctor says it is only a very small chance i.e. 1 in 30,000 and to my daughter I am trying to be positive. Anybody have a positive experience with this drug who can reassure me. I know they test the blood frequently and are closely monitored.
 
Hi, we are in a similar position. My son is 15 and was diagnosed just over a year ago. He's been managing ok with EN and penatasa but his bloods are still not quite as they should be. He is starting Azathioprine when we get back from holiday in a couple of weeks and I've had a few sleepless nights thinking about it. My son is finding it hard to accept that he needs to take anything more as he looks and feels well at the moment. We saw our IBD nurse a couple of weeks ago and she explained to him that it's a bit of a balancing act. Yes there are risks, such as pancreatitis and cancer, with Aza/Imuran but he will be closely monitored. If he doesn't take it then he's still at risk due to the ongoing inflammation which could possibly lead to bowel cancer in the future. There are many really helpful people on this forum who have experience with these drugs - I'm sure they'll be along soon.
 
The majority of kids here have been on one of the immunosuppressive meds, such as 6 MP, Imuran or Methotrexate. This risks are very small, the risks are much greater for fatal car accidents. Have you looked at the side effects for Tylenol? Seriously frightening but also very rare and no one mentions those.

My son has been on remicade and mtx. He has severe disease and it has progresses so now surgery is being discussed. I would give anything for remicade and/or mtx to have been his miracle drugs. Surgery is a hard pill to swallow especially since my son has no outward symptoms beyond the ability to gain weight. But the simmering inflammation left untreated or under treated can be extremely damaging and have serious implications such as bowel cancer in the future, which no one really talks about.
 
Unfortunately imuran isnt working for my son but I have 2 friends who have beenon imuran for years and it works great for them I believe theyve been on it for years. Theyve had crohns for about 12 yrs and are doing great! My cousin has had it since she was 10 and is now 39. She goes through some troubles but lives a normal life. tell your daughter as soon as she finds a treatment that works well for her she can also live a pretty normal life. My son is newly diagnosed and also is scared of side effects. We all are. But the % is very low and the postives outway the negatives I think. My son starts remicade today. First one :/ im nervous about side effects also but trying whats necessary to see him as normal as possible again. Hugs♡ just take it one day at a time. Its all a learning process and takes time.
 
Atlantis - welcome to the forum. My daughter, 13, started Imuran 2 months ago. We have/or are on every drug available here for kids. Imuran was the only drug for Crohn's we hadn't tried and honestly chose it in hopes for a miracle to avoid surgery. I was worried a lot, & still am. I will say though out of all the drugs this is the only one that has given her some life back. Before Imuran she was going 10-15x a day, sometimes with blood. Since starting she is now 5-8x per day. The benefits for her are way outweighing the potential.
 

my little penguin

Moderator
Staff member
Ds was on 6-mp , Mtx , then remicade , then humira and now humira plus Mtx ( due to crohn's plus juvenike spodylarthritis).
6-mp numbers for risk are very low.
Things we do everyday that can kill us
Death risk for those under 14 in US
By car 1 in 250
By drowning 1 in 1000.
The list goes on and on
We do these things because no one is pointing out the risk to you .
But it's still there and it improves quailty of life to do these things.
Remember docs recommend things where the benefits of the drugs outweigh the risks of taking them .
Getting to a place where things are mostly normal lets you focus less on the risks and more on life which is as it should be .
DS has stable crohn's due to humira nothing but biologics seemed to help him.
Risky yes but watching your kid not be able to play go to school etc...
Was not the life I wanted for him .

Big hugs but it will get better just realize the GI drugs take months to start working so its better to start them now .

Fwiw DS stopped 6-mp due to elevated liver enzymes .
They really do watch very closely .
Blood was drawn around 3 and gi was on the phone telling us to stop the med before 5.
Because the numbers tripled normal .
 
Welcome atlantisfreak, many have had great success with imuran. My hubby has been on it for about 13 years and had maintained remission. My son was on it for several years but in the end it just want strong enough but we had no side effects from it.
 
I wanted to post here because of my son who is 19 years old with very severe Crohn's disease as well as being disabled with cerebral palsy as well. As his mum I have had Crohn's disease for 29 years no bother to me with no complications and no operations, however my son has now inherited the crohns far worse than me, he has a mass in his tummy 7cm, this has cause him to fistula, Remicade was started in Nov 2014, along with Azathioprine 25mg, he cannot have surgery as the mass is too compact and close to all vital organs, I have been advised that once the above treatments stop keeping him stable then the mass will bursts, hence death, his organs will be poison by the mass and toxins. The whole situation is so sad, it's like living with an time bomb, am lucky that my team at homerton hospital in london all so good they have look after me for many years with a lot of success, they cannot understand why my crohns hasn't needed surgery they call me there miracle patient, but all that aside my son is on 19 it's just so worrying.
 
I'm so sorry to hear this. No wonder your so worried. I pray the Remicade can work wonders to shrink the mass.

HUGS
 

DustyKat

Super Moderator
Hugs to you Ywiggan48. :ghug:

I am so very sorry to hear about son :( what an awful situation to be in, and that’s an understatement!

This mass, is it inflamed bowel or an abscess and where in the bowel/abdomen is it located?

Dusty. xxx
 
Hi everyone. I haven't been here in almost two years, but it's nice to see some familiar names still here and posting. It's like going home in a way. How has everyone's kids been doing? Marni was very sick and in and out of the hospital when I was last here. She was in the Spring Semester of her 4th grade year. She missed about 3 months of school. Then we had a pretty good run. Not fantastic, but better than lousy. I know you all understand what I mean. But she's back in a flare again and has been almost three months. She's back on homebound school, too, and missing much of her 1st year of middle school. I'm now experiencing what so many of you described about your teenagers not complying with meds and feeds and doctor's orders. It's a whole new dimension of dealing with a kid with Crohn's disease, and it sucks! Fill me in on what you've all been up to and how your kids are doing.
Stacey
 

DustyKat

Super Moderator
Wow! 2 years, where has that time gone?! Welcome back Stacey. :bigwave:

I am so very sorry to hear about Marni, bless her. :( And it surely does suck in all ways. :ghug:

What treatment is she now on?

No change with my two hun, they are still doing well. I count my blessings everyday for that and just wish it was the same for you all. :heart:

Dusty. xxx
 
I'm with Dusty (shocking) on it being two years already.
I'm sorry to hear about your girls current flare.

As for Grace she's now dx with severe Juvenile Arthritis (runs independent) with her IBD.
We're still trying to get her out of the flares.
But still she smiles and is a tough kid.

Hugs, its good to hear an update.
 
She still has her mickey button, which I still highly recommend to those of you who have kids on EN and NG tubes, but this time around she refuses ro follow dr's protocol and take the EN or allow me to give her mx injections every week (dr changed her from pills to shots a month ago). We now have $1200.00 worth of methotrexate auto injection pens sitting in our house for which we paid $200 in copay and insurance paid $1000 that we wont be using because she refuses to let me give it to her saying the shots hurt way too much. What a waste! So, this past Friday at her follow up appointment he changed her back to mx pills and put her on 40mg daily of prednisone to try to induce remission. Now she's mad because she's going to puff up and the boys at school will make fun of her. I pointed out that 1. it was her choice to stay on bowel rest and do it like she is supposed to, or take the easy way and go on prednisone again. She didn't like either option. And 2. She isn't in school right now anyway.
I also had a consult with a new psychologist who will be seeing her to help her with coping and depression related to her chronic pain.
Meds at this juncture are: azacol, folic acid, humira, prednisone, metronidazole, amytriptylin, and I'm sure I forgot one or two.
What a difference it is now that she's 12 and has a teenager's attitude! Lord help me!
 

my little penguin

Moderator
Staff member
Hugs
Ds now has juvenile spondyloarthritis .

Not sure why the auto injectors for Mtx?????
Auto injectors hurt from the force of the spring mechanism -they use them for epipen as well.
Mtx in a vial plus syringe is really cheap -1-2 dollars.

That said I have one teenage kiddo (non Ibd ) and reasoning out consequences is not a strong suit .

Going my Ds who is 11 stays compliant .
 
Omigosh Farmwife, your post came in as I was typing that last one. Thanks for your update. I'm sorry to hear about the arthritis. I assume it's not rheumatoid since you said it's unrelated. This all just sucks so much for our kids. I read the posts from adults with IBD on the Crohns and colitis facebook support page, and it scares me to think about that kind of future for my daughter where they are unable to work, or get fired for missing work so much and are in depression and facing lonely days alone at home while everyone else is out in the world being productive. Even though she's only 12 now, I try to talk to her about interests she might have in careers that allow her flexibility to work from home when she's in a flare, but she can't see that far into the future at her age.
 
Re: the mx injection pens...it's not yhe actual shot she says hurts, it's after the shot when the bolus of mx liquiod is in her thigh. She says that part burns and hurts. After 2 weeks of shots (2 injections), she refused to let me give her another. I asked to try in her torso, but she LOUDLY refused that suggestion.

So, both you, MLP and Dusty are dealing with arthritis now, too? Just keep piling it on, right?
 

my little penguin

Moderator
Staff member
Back of the arm can also be used less pain that way.
Compared to Humira Ds says Mtx is a piece of cake
But he is on pills now .
Is there a reason she is not on biologics if she keeps flaring so bad for so long ...?
Or has she already failed those ?
Enytio(vedo) and stelera are new and working for some here
 
Hi! Glad to hear from you again but so sorry it is under these circumstances:(

A Flare is bad enough but mix it with the preteen hormones and whoa nelly!

I have issues with getting O to take some meds but luckily it is just vitamin d or calcium. Not that they make her feel bad, I think it is just a teen thing to try to exert control over something. This is why I hold on to Remicade for dear life. If I had to rely on a self administered med I am sure I would find myself in your same position.

Please try to remember that a vast majority of the people on these forums are the ones experiencing difficulties and are often the extreme cases. The healthy ones are off living their life. For every bad story you hear there are dozens of good ones that you aren't hearing. This is why I try to stick around here as much as possible. O is thee years out from dx and 2 1/2 years in clinical remission. I say clinical because she hasn't had a scope since dx. She is having scopes in March and I fully expect those to reflect full mucosal healing! She is 15. She has grown 8 inches and gained 30 pounds. She is healthy as an ox, on dean's list, runs on track team 2 hours a day and then swims on a competitive club team 2 hours a day.

My youngest daughter was also just dx'd with Crohn's. She is 11. We are waiting for MRE to decide on treatment.

Good luck and do keep us posted. :ghug:
 

Maya142

Moderator
Staff member
I just wanted to chime in and say my older daughter tried the MTX autoinject pen. She said it did hurt more than the syringe and promptly switched back (much cheaper for our insurance!) within a month. She says the syringe doesn't hurt at all. Have you tried icing the area? She uses her belly or thighs.
 
Hi Stacey, welcome back. Sorry to hear she is going through a flare. We hit remission about a year ago thanks to remicade and have been growing like crazy. He is 15 1/2 now.
 
:dance: Reviving this thread too by joining... I'm having a heck of a time. I have Crohn's, but it's harder to deal with my 13 yr old son's Crohn's than my own. The good news is, I know that I HAVE to take care of myself so I don't get sick too. I worry so much about him. Today, I called the insurance company about coverage for counseling, and I'm not sure whether I'm ready to drag him to a counselor, but I am trying to find one in our area for me (easier said than done), so that I can process all of this. I guess I'm trying to hopelessly fix something that can't be fixed. I want my kid to be healthy and go to school and feel "normal" again. Just when things seem to get back to normal, he has a flare. My sister thinks he is stressing himself out so that he doesn't have to face his fears, thus triggering a flare. Or maybe it's his diet, or he's doing too much, or not enough. Or it's everything. Or, I just need to put him on the heavy meds and throw up my hands. Thanks for letting me vent.:heart:
 
The GI group our doctor belongs to which is part of the larger pediatric specialist group now has counselors in the group to help kids dealing with their medical issues. It's a long time coming.
 

CarolinAlaska

Holding It Together
:dance: Reviving this thread too by joining... I'm having a heck of a time. I have Crohn's, but it's harder to deal with my 13 yr old son's Crohn's than my own. The good news is, I know that I HAVE to take care of myself so I don't get sick too. I worry so much about him. Today, I called the insurance company about coverage for counseling, and I'm not sure whether I'm ready to drag him to a counselor, but I am trying to find one in our area for me (easier said than done), so that I can process all of this. I guess I'm trying to hopelessly fix something that can't be fixed. I want my kid to be healthy and go to school and feel "normal" again. Just when things seem to get back to normal, he has a flare. My sister thinks he is stressing himself out so that he doesn't have to face his fears, thus triggering a flare. Or maybe it's his diet, or he's doing too much, or not enough. Or it's everything. Or, I just need to put him on the heavy meds and throw up my hands. Thanks for letting me vent.:heart:
SAHM, let me encourage you that counseling can be a good thing. I think it helped my daughter's anxiety over her Crohn's and helped me to understand the source of her fears so I could stop playing my part in creating the environment of fear, or something like that. I hope you both can find healing and normalcy and peace.
 
Counseling sounds like a good idea to help the whole family.

carol: please expand on your comment about eliminating fear. It may help all of us mother's with children IBD.
 
SAHM, if he sees a GI in a large group or affiliated with a children's hospital they sometimes have councelors that specialize in kids and chronic illness if you do decide for him to see a therapist. I think if you take that route for him finding someone who specializes in that would be the best.
 

CarolinAlaska

Holding It Together
Counseling sounds like a good idea to help the whole family.

carol: please expand on your comment about eliminating fear. It may help all of us mother's with children IBD.
Hope, A lot of Jaedyn's fear at the time centered around having to have a G-tube. I was so stressed at the time about her health and frustrated with her not eating. I would use that as a threat to try to motivate her, but in reality it was making her more anxious, and the anxiety made her symptoms worse. Her counselor pretty much said making her get it G-tube would be something like abuse because she was so afraid of it . This opened up a lot of conversation over the G-tube, and we took it off the table as an option. I started working on finding positive ways to motivate her and a lot of her anxiety about her crohns improved.
 
Location
,
I have a question and don't really want to start a new thread, so l'm hoping someone will be able to help me.

My daughter's knees have been hurting a lot the last few weeks and its come to the point where she can no longer bend them without being in a lot of pain. We've mentioned this to the GI many times but he keeps telling her to take Panadol, which doesn't help at all. I've given up on contacting the GI so l've made an appointment with our GP next week. My question is will an xray show anything or will we have to see a rheumatologist to figure out what's happening?

Thanks.
 

Maya142

Moderator
Staff member
You probably need to see a rheumatologist. M's first joints affected were her knees. Her x-rays were normal but an MRI showed a lot of inflammation and fluid in her right knee.
 

my little penguin

Moderator
Staff member
Rheumo would really be your best bet
They can mri her knee and sometimes just by feelings and bending tell you what is going on
JSPA does occur a lot with crohns so make sure to ask if the Rheumo ruled that out
Juvenile spondylarthritis

Good luck
 

Maya142

Moderator
Staff member
^ Absolutely true - she won't necessarily need to have an MRI. M's right knee was very swollen and we were actually worried about an injury (even though her dad and sister have AS...wishful thinking!).

I wish I had solutions for pain relief in the mean time but all I can think of is heat and ice. We tried some over the counter creams like Bengay that didn't help much. NSAIDs did help but most kids with IBD are not allowed to take them (M's GI has allowed her to take them since her arthritis is so bad). Your GI might be ok with Voltaren gel though, since it is less likely to hurt the stomach. It's by prescription here but I believe it is over the counter in other countries. M's GP prescribed it for her initially - you may be able to get it before seeing a rheumatologist.

M had a knee brace for a right knee but it sounds like that might her knee hurt more if she is having trouble bending it (incidentally, M couldn't fully straighten it, but bending it was fine!).
 

DustyKat

Super Moderator
Where is she at with her Crohn’s upsetmom?

Large joint pain runs parallel to intestinal inflammation.

Dusty. xxx
 
Location
,
Where is she at with her Crohn’s upsetmom?

Large joint pain runs parallel to intestinal inflammation.

Dusty. xxx
After a recent course of flagyl she has started flaring again. Never been in remission. We're looking at moving on to an adult GI soon as her GI doesn't want to change her medication.
 
New new mum to all this, daughter dx last year 16. On humira 40mg after a year on 20 and only a few months of feel descent. After 4 bi weekly shots it seems the 40mg may just be starting to help. Anemia, and in the ileum. Any advice? On anything I should maybe try or be helpful with. Thanks in advance.
 
My son was facing an increase in his Remicade dose 2.5 years ago. In the weeks before the next infusion with a higher dose, he tried the specific carbohydrate diet. His symptoms improved massively, his labwork became normal, and he never needed the higher dose of Remicade. Now his doctor has given him the OK to go off the Remicade. Don't overlook the potential contribution that a dietary change can make. My son would never be where he is today without having changed his diet.
 
I was wondering about having daughter food allergy tested. Is that something that anyone as done before starting a certain way of eating? Thanks
 

DustyKat

Super Moderator
@Momoftwo:

With disease in the ileum have bloods been done recently for B12, Iron Studies, Folate, Vit D, Magnesium and Zinc?
 
Every three months blood work done, only showed low in protein this last time. Not sure what is really checked on other than iron. Still new to all this and thought maybe the allergy food test would help? She Was told to eat anything and everything per GI to gain weight, but if she does t take Miralax everyday we run into lots and lots of pain and gas, so maybe it's the food?
 

DustyKat

Super Moderator
It wouldn’t hurt to have allergy testing done.

Unfortunately diet is like everything else with this disease, highly individual. By all means try whatever you think may provide relief but you will find there is a lot of trial error. Also keep a food and symptoms journal so you track if there are some foods that proving more problematic than others.

When was her last scope?
 

my little penguin

Moderator
Staff member
Do not do IGg testing - this is not a food allergy - some nauropaths suggest it is but your body is suppose to produce IGg to food and other things .
True food allergies cause reactions can be determine with IGE testing and skin testing by a board certified allergist. But randomly testing for food allergies is not recommended since your blood can test positive but not be allergic
Only with known history of reaction and positive Ige blood tests or skin tests are you considered allergic


Food intolerances are a different story there isn't a good test for those
Elimination diets are the only way to figure those out and introduce see a delayed reaction and then repeat to see if a delayed reaction is seen again

Ds has true food allergies to tree nuts , fish , and sesame . These he carries and epi pen for and avoids at all costs .

He has food intolerances we found by the crohns exclusive diet to chicken and beans and wheat . These cause Gi distress but will not kill him big difference .

Remicade is not recommended to be stopped EVER .
Unless it stops working
Or you have a reaction
 
Why oh why do I have to travel for work just a few days after DD's scopes and starting treatment. I know my DH is capable of caring for her but it's just not the same. She wants me there and I can't be. DH isn't as patient and they will argue. She doesn't need to be stressed out.
 
so sorry @buchanaj it's so hard to not be able to be there for them at those times, my dd wants me there as well, dads great but sometimes you just want mom.
 
“Kaplan-Meier analysis of the proportion of patients with sustained clinical benefit demonstrated that 50% relapsed within 477 days after infliximab discontinuance. In contrast, 35% of patients remained well, and without clinical relapse, up to the end of the nearly 7-year follow-up.”


This study demonstrates that up to 67% of patients with IBD in deep remission at the time of cessation of TNF-alpha blocking therapy remained in clinical remission during the 12-month follow-up. The majority of patients (85%) in clinical remission also remained in endoscopic remission.” Retreatment with anti-TNF therapy after a patient relapsed was effective in 94% of patients.
 
Hi, I am mom of two adult children with Crohn's Disease. Lately, a friend's daughter died of Leukemia from being on an immune suppression drug for an organ transplant. Got me to worrying about the incidence of cancer for Crohn's patients taking immune suppression.
 

Maya142

Moderator
Staff member
Hi and welcome! What medication are your children on? The incidence of cancer varies depending on the medication. For example, 6MP/Imuran would be the highest risk - they are associated with Lymphoma and non-melanoma skin cancer. There have also been some cases of hepatosplenic T-cell Lymphoma, mostly in young adult/adolescent males who have been on 6MP/Imuran and Remicade. However, that is very, VERY rare.

But many pediatric GIs have stopped using 6MP and Imuran for that reason. MTX is considered safer, so that is being used more and more as an immunosuppressant for Crohn's, instead of 6MP and Imuran. Biologics are also considered safer.

Remember that inflammation itself puts you at a higher risk for cancer. So treatment is very important to control the inflammation.

I'll tag my little penguin because she knows the statistics.
 

Catherine

Moderator
Hi, I am mom of two adult children with Crohn's Disease. Lately, a friend's daughter died of Leukemia from being on an immune suppression drug for an organ transplant. Got me to worrying about the incidence of cancer for Crohn's patients taking immune suppression.
I know of one child who died from leukaemia following a dx Crohn's but that child was miss dx with Crohn's disease when it was leukaemia along.

This a number of years ago.
 
Hi all my son has been suffering faecal loading since last march and had manual evacuation with scopes last Thursday. He is on 8 laxido, 20ml sodium picosulphate, 2 senna tablets and bisocodyl suppostitory daily from November. Last Thursday the gastroenterologist said that faecal loading was higher up the colon than he had expected and had flushed him out with litre of saline solution. The scopes did not note any inflammation which is great. He is also in humira bi weekly. He has been in constant pain daily for months now. His faecal calprotectin is normal as all bloods. So crohns appears to be well controlled. He is sleeping at night and taking painkillers which he said is not helping. He cant get out of bed everyday and is having to be wakened at my mothers after 2 every afternoon. He is 14 and missing a lot of school. He has had breakdowns about this constant pain. can anyone suggest what this can be ? the gastro team feel its not crohns or medication related. Gabapentin has been mentioned in the past but it along with other stronger pain relief meds have the side effect of constipation so would not help with his impaction issues. I really am at a loss as he should now be cleared after last weeks procedure but the pain is still very much here and the severe fatigue. any advice or help would be so appreciated thank u xo
 

my little penguin

Moderator
Staff member
You said he is on painkillers
Those will cause the gut to stop
Tagging farmwife Maya142
Is there a pediatric amplified pain clinic near you ?
Will the doc let you stop the painkiller meds ?
How does his body do on een (formula only)?
Is he a liquid in liquid out sorta kiddo or constipation kiddo on all formula ?

Sometime they get in a cycle
Gut slows down for whatever reason
This hurts horribly
They give painkillers
This slows or stops the gut completely
That hurts more so more painkillers
And the cycle repeats


Two years ago Ds gut would not move after a week bout of constant hospitalized diarrhea we switched so many things around no one knew what was causing what problem
In the end we reduced his formula intake
He had been on 100% amino acid based (elemental formula )
And added 50% food instead
We also increased miralax considerable

But higher miralax while he was on all formula did nothing
Until food was added

This was months of misery

Nothing was wrong other than his body got into a very bad loop

It didn’t fix over night
But he was able to get back to normal after a lot of changes

Now we don’t let him not go for more than two days

Now that he is cleaned out
Is he have 1-2 soft bm a day ?
Big hugs
Slow motility is horrid
 
Hi the painkillers are just paracetamol but he has been refusing them as he said they don't help with pain at all. Im not sure about paediatric amplified pain clinics must look into that im in Ireland. The pain killers as I say are just when he will take them but has been refusing as he said isn't touching the pain at all. He has been on een 3 times since diagnosis and it does work well with him. They haven't suggested it this time as they have said it is not the crohns. Hes on the constipated side and is loading at his transverse colon and descending. He had impaction closer to rectum in xrays in December but since having few phosphate enemas it has been higher up. My son is going some days with overflow but other than that could be few days with nothing. even with the high dose laxatives. God help your son glad he got some relief it really is heart breaking. I don't know what to do as my son is sleeping his life away and when not sleeping he is in constant pain. All bloods are normal though and scopes didn't see any inflammation. im not sure if any biopsies have been taken.
 

my little penguin

Moderator
Staff member
My suggestion for een was purely to loosen stool if he was s the type of kiddo who when on een switches from constipation to diarrhea
Mine used to when she was on semi elemental

One thing they told use woth chronic pain
They need to be at school
Be up exercising
These things lessen how the body processes pain
It seems cruel but it does help
30 minutes of exercise a day
We started with just walking slowly in the pool
School is a necessary distraction

Not napping during the day
So he gets woken up early 7-8 am even if he tired
Then has to move
Sleeping constantly and not moving makes pain worse
Since they focus on pain
Do not ask about the pain
Let him tell you
Acknowledge it
Assign a number 1-10 and move on
Heat -heating pads helped Ds
Hand held massager put on his belly moving in a circle to move things along
Tens unit

Keep a good diary
Have a nutritionist look it over


Moving especially walking is key
Regular walking hurt Ds too much
So the pool was a big help


Hugs
 
yeah he has been going to school except this week and end of last week with the scopes. He hasn't lasted full days though. He has been using the computer as a distraction and seen clinical psychologist few weeks ago. In a months time this will be a year from all this started. that was when we found out he had developed antibodies to infliximab and started humira. His brother had taken him around the local racing track for walks before he started to get worse. I think your right he would need to be doing this everyday. Im just concerned as im being told its not Crohn's related but its still his stomach this is in pain and he is so tired all the time. It could be being a teenager too I suppose. It was disheartening for him last week as he thought pain was going to leave on Thursday after they attempted the clear out during the scope. He also has aspergers syndrome and generally has a high pain threshold. Im hoping everyday that this will pass soon. There are people on here in a lot worse positions so I need to be grateful. Just very hard to see him in constant pain. xoxo
 
Ongoing pain can really tire a person out.

No activity can make the constipation worse. Exercise is a big component on alleviating constipation. It wakes up the bowels and gets them moving. My non Crohn's daughter suffered terribly from constipation as a kid. Even got to the point of rectal prolapse. We had to have her drink a lot of water. Most teens don't drink nearly enough water. She also was a swimmer and we found that swimming helped move her bowels. It was something about the exercise but more the water. Maybe the kicking motion? The relaxation that comes from the repetitiveness of doing laps etc.

Good Luck. It is so hard to deal with somewhat normal kid things when they have Crohn's. We are always wondering what is causing what. Hugs!
 

Maya142

Moderator
Staff member
Yes, I agree with what my little penguin said. It sounds awful and cruel to make a child in pain get up and get moving and go to school, but it really helps.

There is a great book called "Conquering your Child's Chronic Pain" - you can get it on Amazon. It talks about amplified pain and how it is treated. Amplified pain is essentially over-active nerves that are sending pain signals to the brain when they shouldn't be. It can be triggered by inflammation or even something like constipation - his nerves are so used to sending pain signals because of the constipation that even when it's gone, they continue to send them.

That is pretty simplistic but that's how it was explained to us ;).

The idea is to live as normally as possible. The kiddo is supposed to go to school, extracurriculars and just keep themselves busy. Parents are not supposed to ask "How are you feeling?" constantly because it draws attention to the pain. Instead, if the child says he is in pain, suggest a distraction - whether it is going for a walk or reading a book or even watching TV.

The goal is to get the kiddo functioning as normally as possible. Over time, the pain will reduce. You can try meds like Gabapentin - they are used for this kind of pain. Opioids are a bad idea because like you said, they will worsen constipation.

Start small - whether it is 10 minutes in the pool or a 10 minute walk. Exercise really helps, so daily exercise is a must. My daughter tries to walk or bike for 20-30 minutes daily. When she is home (she is at college now) she also swims.

If he can't do full days at first, do a week of half days, then try full days. Tell him he can go to the nurse if he needs to, but being in school is really important. His brain will be busy focusing on school work and not on the pain.

Physical therapy can help. The pediatric pain programs they have the in US are amazing - I would see if there is an equivalent in the UK. My daughter did one and it really taught us to think about pain very differently.

Seeing a psychologist to learn different ways to cope with chronic pain is also very helpful. Meditation, imagery, breathing can all help.
 
Ongoing pain can really tire a person out.

No activity can make the constipation worse. Exercise is a big component on alleviating constipation. It wakes up the bowels and gets them moving. My non Crohn's daughter suffered terribly from constipation as a kid. Even got to the point of rectal prolapse. We had to have her drink a lot of water. Most teens don't drink nearly enough water. She also was a swimmer and we found that swimming helped move her bowels. It was something about the exercise but more the water. Maybe the kicking motion? The relaxation that comes from the repetitiveness of doing laps etc.

Good Luck. It is so hard to deal with somewhat normal kid things when they have Crohn's. We are always wondering what is causing what. Hugs!
Yeah swimming is definitely something I am going to try. Exactly I was even researching EDS as I seen parents talk about it on here and thought is this a possible explantion as the fatigue and impaction are not being attributed to the crohns at all. We have been keeping the water intake up as it was recommended especially with the high dose of laxido that he is on daily. You are so right crohns does make dealing with everyday kids things harder. I suppose everyday is a learning day with it xo
 
Yes, I agree with what my little penguin said. It sounds awful and cruel to make a child in pain get up and get moving and go to school, but it really helps.

There is a great book called "Conquering your Child's Chronic Pain" - you can get it on Amazon. It talks about amplified pain and how it is treated. Amplified pain is essentially over-active nerves that are sending pain signals to the brain when they shouldn't be. It can be triggered by inflammation or even something like constipation - his nerves are so used to sending pain signals because of the constipation that even when it's gone, they continue to send them.

That is pretty simplistic but that's how it was explained to us ;).

The idea is to live as normally as possible. The kiddo is supposed to go to school, extracurriculars and just keep themselves busy. Parents are not supposed to ask "How are you feeling?" constantly because it draws attention to the pain. Instead, if the child says he is in pain, suggest a distraction - whether it is going for a walk or reading a book or even watching TV.

The goal is to get the kiddo functioning as normally as possible. Over time, the pain will reduce. You can try meds like Gabapentin - they are used for this kind of pain. Opioids are a bad idea because like you said, they will worsen constipation.

Start small - whether it is 10 minutes in the pool or a 10 minute walk. Exercise really helps, so daily exercise is a must. My daughter tries to walk or bike for 20-30 minutes daily. When she is home (she is at college now) she also swims.

If he can't do full days at first, do a week of half days, then try full days. Tell him he can go to the nurse if he needs to, but being in school is really important. His brain will be busy focusing on school work and not on the pain.

Physical therapy can help. The pediatric pain programs they have the in US are amazing - I would see if there is an equivalent in the UK. My daughter did one and it really taught us to think about pain very differently.

Seeing a psychologist to learn different ways to cope with chronic pain is also very helpful. Meditation, imagery, breathing can all help.
I will definitely be making a purchase from amazon of that book thanks so much for recommendation. I will try anything. I took him around the track and told him we will be doing that each evening once I finish work and also pool at least once per week. It really has consumed his life for the last year. Sometimes it feels like you jump one hurdle nad another makes its presence known. I have been researching what causes loading in transverse and ascending colon but not really coming up with anything. It may just be something he will have to live with. I also am not sure if taking all of the laxitives and meds at the moment are going to make him dependant completely on them for a bowel movement. He is really just having overflow whenever he has a motion.
Your so right everyone is always asking how he is feeling so I must stop this too. I never thought of it that way but it is drawing attention to the pain. The psychologist was happy with his distraction techniques but possible breathing techniques could be explored better.
Gabapentin was mentioned last year but I thought a side effect of it could be constipation. There was another amitriptyline I think it was called. Do you have any experience with it ?
The physical therapy sounds great too. I need to look into it. I need to think more positively as I keep thinking must be something else as he is always such a bad colour, in pain and so tired all the time. We have tried a lot of things in last year but need to be more consistant xo
 

Maya142

Moderator
Staff member
My daughters have tried both Gabapentin and Amitriptyline. The younger one is on Gabapentin. She is not sure if it is helping with pain, but it is certainly helping her with sleep. Sleep is one of her big issues - she wakes up a lot from pain - so having something that helps is great. No side effects besides sleepiness.

But she does need Miralax daily because she is on other pain meds due to joint damage from her arthritis.

Older one tried Amitriptyline years ago. Now I can't remember if it worked or not! I do know it can cause constipation.

Has he seen a motility specialist to figure out why this is happening? Would it be possible for you to see one?
 
My daughters have tried both Gabapentin and Amitriptyline. The younger one is on Gabapentin. She is not sure if it is helping with pain, but it is certainly helping her with sleep. Sleep is one of her big issues - she wakes up a lot from pain - so having something that helps is great. No side effects besides sleepiness.

But she does need Miralax daily because she is on other pain meds due to joint damage from her arthritis.

Older one tried Amitriptyline years ago. Now I can't remember if it worked or not! I do know it can cause constipation.

Has he seen a motility specialist to figure out why this is happening? Would it be possible for you to see one?
Sounds like gabapentin really would be worth a try. God love your girls dealing with crohns and arthritis warriors they are.

There has been no mention of a motility specialist to figure out why this is happening. I would be delighted if it was suggested as I would like to know what the cause is. The nhs is really stretched her and getting appointments can have a long waiting time. I must check with the gastro nurse if there are any motility specialists here that I can take him to. Do you know what could cause this ? xo
 

Maya142

Moderator
Staff member
I honestly don't know. My daughter has a different motility issue - Gastroparesis - and that is why we saw a motility specialist. I was just wondering if the motility meds used for Gastroparesis, might work in his case but I really don't know what is normally done for fecal loading.

But it's at least worth asking about, if there is a motility specialist you can see.
 
I honestly don't know. My daughter has a different motility issue - Gastroparesis - and that is why we saw a motility specialist. I was just wondering if the motility meds used for Gastroparesis, might work in his case but I really don't know what is normally done for fecal loading.

But it's at least worth asking about, if there is a motility specialist you can see.
Gastroparesis has never really been mentioned. He actually had a barium swallow I think test was called last year when this all started. After it they actually commented on how fast it went from stomach through small intestine. He did have a narrowing from surgery resection site but was getting through fine. It seems to be after this that it slows down. I really will be finding out about a motility specialist as no one is suggesting what is causing this. I know ibs may cause this but surely then it would have always been an issue and not just started xo

Im so glad to hear that they are able to help your daughter with motility meds for the gastroparesis xo
 
Just going to throw a couple other thoughts out there. Dairy is known to be a common food intolerance that can cause constipation. Perhaps there are other food intolerances that may be causing this.

Also, IBS does cause constipation and many IBDers have an IBS overlay. My older Crohnie was dx'd with IBS by her last GI, emphasis on last. It wasn't IBS, it was a flare, but her new GI also said he thinks she has SIBO (small intestinal bacteria overgrowth). It is very common in IBD patients and especially happens around flares and in patients who have had previous surgery. It is very, very often misdiagnosed as IBS because it produces many of the same symptoms. Diarrhea is more usual but it can produce constipation. The test for it is an easy in office breath test.

I am assuming he was checked for Celiac at scopes but Celiac could also cause constipation.

Ugh! The gut is so cloudy!
 
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If food is going through his stomach fast, he definitely does not have Gastroparesis. But I wasn't suggesting he had it, I actually meant a motility issue affecting the colon.

https://aboutconstipation.org/colonic-inertia.html
Yeah that's what I was thinking that it wasn't the same but had been trying to find other possible causes for slowing down when it got to the large intestine. I have been reading the book I got from amazon and it has made me so interested in the pain management clinics mentioned. However none in Ireland or uk I can find. Its interesting too as aspergers syndrome is mentioned as well IBD. He also has aspergers syndrome. His school has contacted me today to say that he is so unhappy at school and they want a meeting.
 
Just going to throw a couple other thoughts out there. Dairy is known to be a common food intolerance that can cause constipation. Perhaps there are other food intolerances that may be causing this.

Also, IBS does cause constipation and many IBDers have an IBS overlay. My older Crohnie was dx'd with IBS by her last GI, emphasis on last. It wasn't IBS, it was a flare, but her new GI also said he thinks she has SIBO (small intestinal bacteria overgrowth). It is very common in IBD patients and especially happens around flares and in patients who have had previous surgery. It is very, very often misdiagnosed as IBS because it produces many of the same symptoms. Diarrhea is more usual but it can produce constipation. The test for it is an easy in office breath test.

I am assuming he was checked for Celiac at scopes but Celiac could also cause constipation.

Ugh! The gut is so cloudy!
Oh it really is I wish I could help him as its really affecting his life now to the point that his school has just rang and want to meet with me. He is miserable all the time and says he just feels horrible all the time. Last year he was given some treatment for bacterial overgrowth as it was a suggested possibility. It didn't make any difference though. That is interesting about the celiac I am unsure if he was ever tested but will be asking the question xo
 
My 17 year old son was diagnosed with probable UC/ but can't rule out Crohn's yet- so they are calling it unspecified. Its been a tough year with many meds,
currently we are transitioning from everything he is on orally and rectally to remicade infusions. Complicating it all is a recurrent c-diff infection confusing the response.
He is currently in the induction phase of remicade and I don't know if he is improving, or whether its the antibiotics or steriods.

How long do people give remicade a chance? How soon should we see a response?

it sucks being worried all the time.
 
Some people have relief immediately and some can take 6 months to a year to see full results. My son saw immediate relief but took a full year to reach full remission.
Even with remicade it can take messing with the dosage and timing to see results.
It's so hard because we all want that immediate fix for our kiddos and waiting is tough!
 
Antibiotics can really mess up the gut and so that might be clouding things right now. Give it a little time. It took my daughter 6 months to get a full response to Remade. Lots of tweaking doses and schedule etc.

If symptoms persist I would mention them to GI and see what they say.
 

Maya142

Moderator
Staff member
I would say that you have to wait till the CDiff is cleared up. Then you will see if he is responding to the Remicade or whether he needs the dose or frequency increased. My daughter started out at 5 mg/kg but eventually needed 7.5 mg/kg and then 10 mg/kg every 5 weeks or so, before she went into remission. The good part about Remicade is that you have a lot of room to play with the dose and frequency, which is not the case with other biologics.

It took 3-4 months before my daughter felt GOOD on Remicade.

She also has had CDiff - twice - and it really is the absolute worst. Since you say he has had recurrent CDiff, are they treating him with Vancomycin? And has a fecal transplant been brought up?
 
thank you for the quick responses. I'm so glad of all your supports- We have felt so alone.


He had one c-diff episode last month- treated 10 days of vanco., it came back and now they are using metronidazole for another 10 days. We are not yet at the fecal transplant step.

thanks for the remicade info... I need to be patient I guess, but its so hard...
 
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Maya142

Moderator
Staff member
We used Vancomycin both times - we were told that in IBD patients the recommendation is to skip Flagyl and to use Vanco. The guidelines for adult IBD patients also state that Vancomycin should be used....I'd bring it up if Flagyl does not work for him.

We were told my daughter would need to have CDiff 3 times to have a fecal transplant - so we aren't there yet either (and I hope we don't get there!!).

Hang in there. CDiff is really tough - I'd focus on keeping him hydrated and once he is done with the abx, wait and see how he does on the Remicade.

There is a lot of "wait and see" in the IBD world - I think it's one of the hardest parts!!
 
Hi, not sure how this works, I just joined - I am a mother of a son who was diagnosed with crohns July 2018. Prior to finding this news, we learned that he had advanced arthritis in his hips, and then his Si joint. Arthritis exhibited symptoms before Crohns which was pretty silently doing it's thing in the background. Really surprised that he was even told to visit GI specialist and then learned about Crohns. Seems like as soon as we learned this, it got worse. He has been on remicade for 3 1/2 months and doing well, however, there wa a set back after his 3rd infusion and we had to speedily to another one 3 weeks before his 4th infusion. It appears he is metabolising quicky so doc wants to put him on 4 week schedule, and he is currently reloading. Has anyone heard of re-loading remicade. I have read many messages and haven't read anything about loading doses for the 2nd time. I too understand what you are all going through. Even when he is well, I am always worried that it won't last, and it's causing me anxiety! He was diagnosed at 19 and is currently 20, is pretty thin but has gained some weight since started Remicade. I am glad I found this thread. I think we would all trade places with our kids if we could.
 

my little penguin

Moderator
Staff member
Welcome
Tagging
Maya142
Crohnsinct
Pdx
Peanutbutterlovesjelly

You can add calories with formula in addition to food

Ensure or boost both work well for adults
Some need semi elemental (peptamen)

Een can boost remission (exclusive enteral nutrition-formula only )
No solid food

Does nothing for his ankylosing SpondyloArthritis though

Sometimes remicade needs een plus mtx to get things under control

Ds was dx at age 7
Now is 15
Ds is a high metabolizer as well
He is currently on Stelara every 4 weeks
He was on remicade and humira over the past 7 years
 
Thank you for your reply. L probably had arthritis for a few years, although Crohns wasn't obvious, but the signs were not obvious - thought it was just how he walked, and even the chiropractor and family doctor didn't catch on right away. Anyway, this is all pretty new. How is your child doing with Stelara? Is Stelara good for both IBD and AS? :ywow::ywow:
 

my little penguin

Moderator
Staff member
Ds has juvenile SpondyloArthritis ( not AS - no spinal involvement yet)
But is his b27 positive so watching him closely
Stelara at high frequency(every 4 weeks) has helped both his arthritis and his Crohns
But still needs mtx and Celebrex for his arthritis as well


Humira also helped both but had to add mtx
Remicade he wasn’t dx with arthritis yet (so it may have been helping ..,)
 

Maya142

Moderator
Staff member
Stelara is NOT good for AS. In fact, it failed in phase III trials and the study was terminated early.

Stelara does seem to work for peripheral arthritis but not for spinal (axial) involvement, which includes the SI joints. It's used in psoriatic arthritis but most rheumatologists will tell you that it's not very effective for that either.

To actually have an official diagnosis of Ankylosing Spondylitis, there has to be damage to the SI joints that shows up on x-ray. However, damage takes quite a while to show up - it can take 8-10 years, so it's rare to see it in kids/teens.

If there is no damage visible on x-ray but inflammation is visible on MRI, that means your son has juvenile axial spondyloarthritis (SpA). It has not yet progressed to AS and the goal of treatment is to prevent that progression.

My husband and daughters all have AS. Initially though, my girls were diagnosed with juvenile SpA. My older daughter progressed to AS in 5 years. My younger one took only 3. My husband has pretty severe AS - he also developed severe hip arthritis in his 20s. He has had 5 hip replacements, starting at age 30, fused SI joints, a damaged ankle and some spinal fusion.

Anti-TNFs are the best option for patients with both axial SpA and IBD. Typically Remicade or Humira. You want to treat aggressively, to prevent further damage to his hips and SI joints. My girls have been on anti-TNFs for years and my older daughter did great on them.

My younger one has severe AS - pretty much every joint of hers is involved, from her toes to her jaw. We made the mistake of not treating her aggressively enough when she was younger and only had a few joints involved, and she is paying the price.

She is 22 and it is looking like this year she will need a jaw replacement. She has very stubborn AS - we tried everything: Humira, Remicade, Simponi, Cimzia, Enbrel, Methotrexate, Arava, Imuran, Sulfasalazine and so on. We finally moved on to IL-17 inhibitors - Cosentyx and Taltz - and those have REALLY helped her. However, they can cause a Crohn's flare and aren't meant to be used in AS patients who also have IBD. But because my daughter's AS is SO much worse than her IBD, we chose to risk that.

Her IBD has been mild. Her Crohn's diagnosis was a surprise too - her only symptoms were lower right abdominal pain, some weight loss and occasional constipation. But her Crohn's has responded very well to anti-TNFs, thankfully.

Has anyone heard of re-loading remicade. I have read many messages and haven't read anything about loading doses for the 2nd time. I too understand what you are all going through. Even when he is well, I am always worried that it won't last, and it's causing me anxiety! He was diagnosed at 19 and is currently 20, is pretty thin but has gained some weight since started Remicade. I am glad I found this thread. I think we would all trade places with our kids if we could.
I have heard of reloading with Remicade. Usually it's done when there's been a break in treatment, but it makes sense to do it in your son's case, since there was no Remicade in his body and you're essentially starting from scratch.

There is also high dose Remicade - they can go up to 20 mg/kg every 4 weeks. My younger daughter tried that and it worked for a while. But she doesn't respond well to anti-TNFs in general. My older daughter does. She has had an easier time than her sister, thankfully. She has hip, SI joint, jaw, knee, ankle involvement. But anti-TNFs controlled her arthritis well (mostly) and she has been able to live a pretty normal life.

For juvenile spondyloarthritis, it is not uncommon to get Remicade every 4 weeks. The FDA approved dose for AS is 5 mg/kg every 6 weeks. For Crohn's it's started off at 5 mg/kg every 8 weeks and the dose/frequency is changed if necessary. Both my girls had infusions at every 4-5 weeks when they were on Remicade.
 
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