Crohn's Disease Forum » Parents of Kids with IBD » The Worried Mum's/Dad's/Carer's Club!


 
02-19-2015, 10:53 PM   #451
Maya142
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^ 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!).
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
02-19-2015, 11:03 PM   #452
upsetmom
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Thanks Maya and MLP....I do have some Voltaren gel at home, so we'll give that a go.
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Daughter dx CD March2012...
(aged 14)

Currently on:
40mg Humira
125mg Imuran




Dx Premature Ovarian Failure 2014



02-20-2015, 05:28 AM   #453
DustyKat
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Where is she at with her Crohn’s upsetmom?

Large joint pain runs parallel to intestinal inflammation.

Dusty. xxx
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02-20-2015, 02:40 PM   #454
CarolinAlaska
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I vote for peds rheumatologist.
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
02-20-2015, 04:53 PM   #455
upsetmom
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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.
02-20-2015, 05:28 PM   #456
DustyKat
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Poor girl. I hope you can get onto a new GI soon upsetmom.

Dusty. xxx
12-12-2015, 11:04 PM   #457
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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.
12-13-2015, 12:21 AM   #458
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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.
12-13-2015, 01:27 AM   #459
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I was wondering about having daughter food allergy tested. Is that something that anyone as done before starting a certain way of eating? Thanks
12-13-2015, 01:38 AM   #460
DustyKat
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@Momoftwo:

With disease in the ileum have bloods been done recently for B12, Iron Studies, Folate, Vit D, Magnesium and Zinc?
12-13-2015, 01:44 AM   #461
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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?
12-13-2015, 01:57 AM   #462
DustyKat
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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?
12-13-2015, 10:01 AM   #463
my little penguin
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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
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12-13-2015, 12:34 PM   #464
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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.
12-13-2015, 03:22 PM   #465
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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.
12-13-2015, 03:34 PM   #466
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“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.
01-17-2018, 01:39 AM   #467
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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.
01-17-2018, 03:30 PM   #468
Maya142
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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.
01-17-2018, 06:25 PM   #469
crohnsinct
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I also want to add hat I think the doses they use for organ transplant may be way higher. IDK if that would be a factor but maybe?
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
01-19-2018, 07:39 AM   #470
Catherine
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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.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
01-24-2018, 06:14 AM   #471
Leed2713
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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
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Son diagnosed age 12 - July 2015

Past medication - 10 weeks modulen NG tube july 2015, Azathioprine

Surgery - Appendectomy, right hemicolectomy and part terminal ileum removed open surgery June 2016

8 weeks modulen NG tube June 2016

Current Medication - Started August 2016 Infliximab, azathioprine, vit D supplements started September 2016
01-24-2018, 07:46 AM   #472
my little penguin
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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
01-24-2018, 09:54 AM   #473
Leed2713
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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.
01-24-2018, 10:08 AM   #474
my little penguin
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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
01-24-2018, 10:39 AM   #475
Leed2713
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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
01-24-2018, 10:41 AM   #476
Leed2713
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My little penguin - I like the idea of the swimming pool definitely going to give it a try xo
01-24-2018, 11:58 AM   #477
crohnsinct
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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!
01-24-2018, 12:31 PM   #478
Maya142
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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.
01-25-2018, 07:55 AM   #479
Leed2713
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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
01-25-2018, 08:07 AM   #480
Leed2713
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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
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