Pediatric Pain Clinic

C has been on 40mg of Pred for over 2 weeks and his pain has not changed. Possibly, it's worse. Labs are fine, small bowel is great, scope showed relatively small ulcers in TI, right side colon.
There is no pain clinic for us to go to, and I am not getting help from GI team. We are seeing a local counsellor for pain management but I don't think "breathing the color blue" is helping.
Soooo....
Please give me your pain clinic in this thread. Maybe there is something we haven't tried.

Two weeks isn’t that long considering you have been worried for close to a year .
When Ds was dx
It took a long time to get over pain .
Each kid is different

Later when he had pain we did visit a pain clinic
But by time they got him in and scheduled pt etc...
He was better (think months not weeks )

FWIW Ds has No ulcers and still had lots of pain .
That said things that we were told
Don’t ask about pain ever
If there is pain let him tell you
Then simple ask for a nimber1-10 and acknowledge but not dwell on the pain
Hot packs
Ice
Abdominal massage (used a hand held in circles)
Swimming pool (even just walking) must be daily
Exercise daily
Must go to school (permit to rest as much as he wants at the nurse)
Tens unit to disrupt pain signals

At one point GI put Ds on all formula diet
And added in one food at a time
For the longest time chicken /wheat and milk caused severe abdominal pain
Took forever but worth it
Ds is back to a full diet now

Regular sleep schedule
No naps
Keeping Ds busy -distracted

But honestly two weeks just isn’t long enough for Crohns to heal

When kids have EoE they only will looked to see if it’s healed after 8 -12 weeks
The GI tract takes a long time
And
Some kids like Clash son don’t respond as well to pred /een

Check out the book:
https://www.amazon.com/Conquering-Y...coding=UTF8&psc=1&refRID=2YRAJ8EK6XDRPZTY8FRC

Conquering Your Child's Chronic Pain - it is what they had us read before we did the pain program.

I will write more tonight.

Thanks mlp, I will pull back my expectations and expect things to happen more slowly. It is oddly reassuring to know your ds had pain with good scopes.

The GI office has another GI covering for ours who is on holiday. She's ordering extra labs today, and an abdominal xray. I feel like someone is listening. This GI had been the one to read his mre and remembered the notable constipation. I told them he has since resolved but it was so bad (loaded into the small bowel) they wonder if there isn't still an issue. I don't think so but I am ok with the xray.

I am kind of concerned about pancreatitis. H had it from AZA, and C is not on AZA however it is possible from Pred and there is a genetic susceptibility to even acute pancreatitis. The pain has woken him up for a few nights running and this morning his back hurt also.

But he may just have a hard time dealing with pain. He needs the tools. We do heat packs, meditative quiet music at night, forced school (I do allow him to call midday if he can't make it). I take them swimming once a week but they are active at school.

I don't ask about pain unless he mentions it ( no worries there as he mentions it 20 times a day or so....)

I am going to look into TENS.

AW man! It is so hard watching your kids suffer in pain and having nothing to tell them or no way to help. T is also a chronic pain kid. She was in pain for three years leading to dx and we found out after that she will always be dealing with pain because her pathways were fried and her nerves were sending pain signals even though there was no clinical reason for the pain. UGH! We ran around for a year trying to find an answer and ending in pain management.

We do all the same things MLP suggested. Daily, heart rate increasing exercise was the number one suggestion from our program. T is much better when she is in softball season. It is also really important to flood the mind with stimuli, because it can't concentrate on that many things at the same time. There is a lot of research with virtual reality to interrupt pain signals. Of course the glasses/programs they use in those clinics are really expensive but maybe a cheaper system could help? Even if to just get him a half hour of relief a day. Sometimes, that's all it takes to keep them from going crazy with the pain and to remember what normal feels like. T wasn't one for the breathing exercises either.

Once she found out that there wasn't an actual clinical reason for her pain she did much better. I think a lot of her pain before that was worry that something was really wrong. It did drive her a little batty that every doctor said, "nope! nothing wrong here". Made her feel like she was crazy. The pain doc finally said, "oh no! You feel real pain"

HOWEVER, he is very early in his dx and I really feel like the docs need to cross off everything before chalking it up to amplified pain. I think your pancreatitis worry is very valid. Maybe not likely but very valid. They should test for that.

Did you pursue a PPI for him?

When the constipation resolved, dd you continue with Miralax or like product? My oldest daughter was encopretic and she had to use Miralax for over a year. The first goal is to clear everything and if they are that backed up it takes a long time. Then we had to keep things soft for a good long while and VERY slowly decrease the Miralax to retrain her muscles etc. It could be constipation. I wish GI's treated constipation better.

I will keep thinking.

There is a great pain management program by me but I doubt you want to travel to the west coast....but we have wine so.....

We lived on the coast of BC for years and would go in a heartbeat...but alas.

The wine would ease my pain.

Anyway, back to clearer heads. We didn't keep with the miralax after the constipation resolved. I think the constipation happened in the first place because he had been eating basically a vegan diet then was suddenly drinking 3000 cals of EEN per day. That's a huge fiber difference plus all the milk protein (we dropped milk last year because of bm accidents). So when we switched to Pred he went back to our regular diet and once things started moving he had quite the volume. Seems to be working ok now. But I am not ruling it out because you never know.

No PPI. No one has suggested it yet and I don't think it's the problem. He did take it before diagnosis for GERD that was really Crohn's. There is some in the cupboard.

I'll put him on the treadmill next complaint. I think it would help.

If video games help pain he'd be in heaven. I restrict access.

Definitely ask about daily miralax
Constipation is Ds issue as well
Without he goes but hurts
Woth it daily things keep moving and pain significantly decreases

He also has rectal prolapse which we found when he was very little
An older kid might not mention it to you or the doc
This can cause spasms of the colon

Good luck

So a few things:
1) It probably took quite a while for his intestines to get into the state they were in. I know they weren't terrible compared to H's scopes, but there were ulcerations and inflammation and inflammation can HURT. Just like it takes months for his guts to become like this, it will take months for him to recover.

Two weeks is definitely not long enough. I also want to add that my daughter's scopes looked very similar to your son's at diagnosis. She had ulcers in her rectum and colon and an inflamed, red, friable TI which bled when biopsied.

She had bad abdominal pain for months. She was diagnosed in early April. We started Remicade and increased her MTX at the end of April. Added Entocort because she was in a LOT of pain in early May. She did start feeling better at the end of May after the second infusion, but it really took till the end of July before her pain was MUCH better. Four months.

2) Amplified pain, as you have heard me say, occurs when nerves continue to send pain signals long after the initial pain stimulus has gone away. Or in the case of inflammation, it could be disproportionate pain compared to the amount of inflammation. It is essentially overactive nerves. It happens when the child has been in pain for a long time - the pain sometimes takes on a life of its own.

Things that help:
Like MLP said, don't constantly ask him how he is feeling. If he says he's in pain, teach him to problem solve. What would help him feel better? Playing a game? Going for a walk? Reading a book? Using heat? Using a TENS unit? Massage?

A psychologist can be helpful in teaching kids how to cope with pain. Belly breathing (diaphragmatic breathing) is a good technique to help a kid calm down when they are very worked up about pain. Imagery can be helpful so they focus on something else. Problem solving - learning to cope with the situation since you can't change the situation itself, only your response to it - is something kids with chronic pain HAVE to learn.

Exercise is essential. It can be physical therapy if he cannot make himself exercise while in pain or if he is very deconditioned from months of not doing his normal activities. Swimming is great. Sometimes I have to drag my girls to the pool - who wants to exercise when they're in pain - but once they're in there, it's worth it. Biking is good to - he is probably big enough to use an exercise bike.

Does he play a sport? That would help too.

Another few questions - how is he sleeping? Is he waking up in pain at night? Or is he lying awake in pain?

When does he complain of the pain most often?

Also, keeping him in a normal routine is essential. I know it sounds awful and cruel to send him to school in pain, but if he stays at home, he is just going to dwell on the pain. School distracts his mind from being focussed on the pain.

In terms of Pred - a PPI actually could help. Prednisone actually makes my daughter's stomach pain worse because it can be very hard on the stomach. She is always on a PPI but when she is on Pred, she often needs Carafate too to coat her stomach.

In terms of EEN - you mentioned he doesn't really tolerate milk. Have you considered a different formula then? Maybe Ensure did not work for him because it is milk based and it's a polymeric formula, so hard to tolerate for some IBD kids. What about trying Peptamen Jr or Pediasure Peptide? They are not the best tasting, but they're drinkable.

I know he is on Pred, but EEN may help with his pain.

I also want to add that none of us can know if your son has amplified pain. He really needs to see a pain management doctor for that. Does your children's hospital have one? Many do now but some do not.

MOST families have to travel to see a pediatric pain management specialist. There are many more pain programs now in the US, but still not that many. We had to travel to a different city (2 hours away) and stayed there for 3 weeks in Ronald McDonald House while my daughter did the pain program.

Right now it is very likely that his gut has not healed and he still has active inflammation. But in months if his FC is down or tests look clean and he is STILL in a lot of pain with no clear reason for it, then you definitely need to see a pain management specialist.

Pain programs for amplified pain are for kids who are unable to function at all - unable to go to school, on many medications - sometimes strong meds such as opioids, unable to sleep because of pain, have no real life anymore because of the pain etc. They usually need intensive help to get back on their feet.

For less severe amplified pain, it is treated with outpatient PT and psychology.

As for psychologists, it took us a while to find a good one. You need one who see kids with chronic illnesses.

Good luck!!

So I don't know if this hospital is near you, but it does have a "complex pain" (chronic pain) clinic: http://www.bcchildrens.ca/our-services/clinics/pain-service#Resources

This is exactly the kind of team he would need to see if his pain does not go away when the Crohn's is treated. I bet they could even help now and give you ideas to help with his pain.

Maya142 His pain is the most consistently noticed at bedtime but it has been waking him up and it's there in the morning and all day.
He lies there in pain trying to sleep. I found an app with meditative quiet music, he said it helps a little.
Pain also wakes him up...but some of that could be the Pred. He takes the Pred at breakfast though.
He did not join any sports this year. But he used to be a sporty kid.
I will look into pediasure peptide. Good thought, just never want him to be that constipated ever again. Maybe as a supplement it could work.
I can ask about a pain program (our hospital is 4 hours each way and underfunded)but first feel like we need to make sure this isn't something we can fix. IE pain indicating something has been overlooked, or med issue, or like you say that we just need more time. Meanwhile these suggestions to speed up healing, or help him cope.
I am ordering the book you recommended above.
Thank you so much for your help and suggestions. This thread is a huge help to us and hopefully anyone else who comes along with similar concerns.

Ok, so increased pain at bedtime is typical. In the day, kids are distracted and busy. Once they settle down, suddenly their brain isn't distracted by a million different things and they become more aware of the pain.

That is where the psychologist comes in. Some kids finding breathing exercises help them relax and fall asleep. Some do well with guided imagery. My daughter had (and still has) issues with sleep, so at first she used an app called iSleepEasy that was recommended to us by Boston Children's. It has guided imagery he can listen to and try and also things like nature sounds. M used both.

After a while, she got sick of that, so she started listening to audiobooks at night. She chooses books she has already read, so she doesn't stay up waiting to hear what happens. She ALWAYS listens to an audiobook now and it helps her fall asleep.

Her favorites are the Harry Potter series and the Eragon series. She must have listened to Harry Potter a billion times but still says it relaxes her and helps keep her distracted.

Pred could certainly be waking him up at night, even if he takes it at breakfast. It could also be causing the trouble falling sleep (well, in addition to the pain of course).

I agree that it is premature to think about a pain rehab program, since he has active inflammation and we KNOW that causes pain. It's only if once his Crohn's is controlled and he is still in so much pain, that you need to think about a pain program.

BUT, that said, a pediatric pain management doctor could give you suggestions though, to help with the pain right now.

Drugs like Elavil are used for pain. So are Lyrica and Gabapentin. You could also try a TENS unit. We got one from our pain management doctor so insurance pays for it and its supplies. But you can buy them online fairly cheaply.

Another option might be to have your GP talk to a pediatric pain specialist and have him/her give you some tips. Didn't your GP do that for H with a neuorologist? They wouldn't do that here but I don't really know the Canadian system well.

There are other apps too - I will check with my daughter about which ones work well for her. She was given a whole list from her psychologist and there are some on there which were more appropriate for a younger child vs. an older teenager/young adult.

Good luck!!

This is a list of apps:
https://www.painbc.ca/recommended-apps-help-manage-persistent-pain

M has only used Breathe2Relax and likes it.

http://www.healingbuddiescomfort.org

This is the other one she's used Comfort kit - she likes it though it is definitely geared to younger kids. I'd have him try this one first and iSleepEasy, if he is willing to try apps.

My Pain Diary is good for keeping a log of his pain. My daughters use is daily. They put in the pain location, if there are any triggers (for example, weather or in M's case, eating something that she knows will cause pain). It's also got a graph that shows you how your pain changed over time, based on the number.

We have found 100% formula
Ds is severely constipated
Up to 50% formula his gut /GI tract pain works better
In his case he had to switch from kids boost to peptamen jr
And later to neocate jr due to abdominal pain of unknown origin
He drinks 50% of his calories
Neocate jr chocolate
Plus solid food and miralax was his miracle
No miralax and within days unbearable pain

Big fan of audible books here as well
Warm baths just to soak
No sports too hard to keep up with normal kids
But daily activity planned
Joined a gym with a warm pool
He has set times to go or has to do pt

My daughters LOVED playing sports - both were soccer players from first grade on.

They continued playing after being diagnosed with arthritis because their pediatric rheumatologist said it was important to keep moving and exercise would help with pain. They were very lucky and always had coaches and teams who supported them. My older daughter played through high school and even college. No matter how much pain she was in, she loved going to practice, even if she was only going to play a little.

My younger daughter had to stop playing in 11th grade due to worsening arthritis and joint damage. She misses it a lot and always says she wishes she could play, despite the pain she is in. She says it ALWAYS made her feel better and she loved being on a team. Her joints are not going to allow her to play soccer, but we hope someday she will get back to tennis, which she also played.

Anyway, the point I am trying to make is that a team sport really made exercise FUN instead of making it feel like a chore. Now my younger daughter has to go on an exercise bike or swim at a gym, both of which feel like a chore to her.

When she was playing soccer, she was SO much happier to exercise, even though she often could not keep up. It was something she loved to do and it made her happy - which is very important for chronic pain. Keeping her mood up and keeping things normal let her be a kid/teen/college student and not just a patient.

We had the opposite
Ds swam competively from age 6 on
He was dx at age 7.
Coaches were ok
But not being able to keep up woth speed (as boys mature they really swim fast- times
In seconds not minutes)
So while Ds was 6-10 it was ok
But around age 11 things became very competive
Being last in the lane (they swam laps in order of who is fastest not age )
And being past by kids much younger than you
Or being placed in groups of younger kids because the older kids are now fasterisnt a motivation
We even moved him to recreational leagues (less pressure from coaches )
But reality is pre teen boys /teenage boys are highly competitive and extremely energetic
So that too was a no go

That was our experience

Poor kiddo . It definitely depends. My younger daughter had that experience too - played on varsity in 9th grade, and JV in 10th. But since she loved playing so much and knew she couldn't play on varsity because it was too much practice and too hard on her joints, she was happy just to play.

While my daughter had to stop playing for school in 11th grade, she played recreationally instead and was happy to do that too. She was distraught over not being able to play at school, but soon got used to the idea and decided she would rather play a little than not at all.

I will say that we have been VERY lucky with coaches and never had a bad one. That made all the difference in the world.

Anyway, the point is just exercise is really important - whatever way he wants to do it. Some kids thrive in team sports, some kids like individual sports and some kids need to do PT instead. It really varies.

Just wanted to say thanks for posting-I'm often not pushing Izz due to pain and perhaps I should tend the other way (she has significant disease now, but just wants to sit on the couch most days). She isn't much for team sports...maybe I'll inquire about PT to start and go from there.