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Crohn's Disease Forum » Parents of Kids with IBD » Celiac son with possible gastric Crohns- how far do I pursue this?


 
08-19-2017, 07:30 AM   #31
mirandapresley
 
Join Date: Jul 2017
My daughter does not describe the pain like that, but pain is pretty subjective. She describes dull aching pain or cramping, which can be sharp.

I am concerned about his mental health - have you considered seeing pain management? There are meds they can try for pain, while you are trying to figure out what the problem is.

Elavil is one that is used for pain. It's technically an anti-depressant, but in small doses it is used for pain. Nortriptyline is similar to Elavil and also used. I'm not sure if they can be combined with Lexapro, but a pain management doc or psychiatrist would know.

Then there are meds like Levsin and Bentyl which are anti-spasmodics. My daughter takes Levsin, which helps her a lot with cramping.

I just wonder if you were able to get the pain under control, maybe his anxiety and depression would get better.

Then you could figure out what is caused by anxiety and what is caused by whatever is going on.

There are many pain conditions that are exacerbated by anxiety - abdominal migraines, amplified pain syndrome, IBS. The pain is VERY real and needs to be treated. They can teach him ways to deal with it and deal with the associated anxiety - biofeedback, CBT, relaxation exercises.

Obviously, you need to get to the bottom of what is causing this, but until then, treating the symptoms may help.

Lexapro can take 4-6 weeks to work. It's encouraging that you're seeing signs of him getting better, but it might take a while till you see a big difference.

I'm really glad the MRE is scheduled - hopefully you will get some answers.
He usually has stabbing, burning and cramping pain- this new sensation has only been something that has happened the last few weeks.

Yes, I do want to get him into pain mgmt. Unfortunately, there is nothing for pediatric pain mgmt here that I can find. It has taken us four months just to get into a psych next week, his pediatrician is the one who prescribed the meds.

We are originally from the Midwest, and I have seriously considered pulling him out of school and heading home to enroll him the pain clinic Mayo Clinic runs for kids, as it is a 3 wk program that gets great reviews.

He has had such a difficult time tolerating any psych meds, that I am extremely hesitant to try to introduce another one, though we have talked about some of the ones you mentioned. We just started at the bottom with the ones with the fewest side effects first, and he reacted badly to all except the Lexapro. I know typically it takes weeks to work, but he is definitely responding much quicker than most people. They have actually done a recent study that showed Lexapro caused changes in brain connectivity in three hours, so I am guessing whatever connections have changed for him are the ones that he needed. He actually woke up this morning and smiled at mw...he hasn't smiled in soooo long. And yesterday he described school as "good" whereas usual it is "horrible, everybody hates me. Why am I so...(insert: Sick, ugly, lonely, stupid....")? I mean he isn't a bundle of rainbows yet, but these are little differences that I can tell are reflective of the cloud lifting. The same thing happened on the Prozac after about two weeks (not the Zoloft though) but the side effects and anxiety were unbearable. So I am feeling cautiously optimistic.

I have no doubt the pain is real. But when he is depressed and anxious, his mind amplifies it, and it is far worse for him, so I am grateful for every little thing that makes it easier to get through the next few days/weeks/ months while we try to figure out what is wrong.
08-19-2017, 11:15 AM   #32
Maya142
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My daughter did the pediatric pain management program at Cleveland Clinic. We loved it!! That might be another one to look at it.

It taught her a lot. She has IBD and arthritis, but because she had been inflamed for so long, her body kept sending pain signals, long after the IBD and arthritis were (somewhat) well controlled.

So she was in a LOT of pain, very anxious, up all night (every single night) etc.

It was really a wonderful program and she learned a lot.

But they won't diagnose your kiddo there, so I would only do it after you've fully investiagted the pain - with the MRE/pillcam etc.

The other pain meds we tried (non-opioids) were Gabapentin and Lyrica. Those might also be an option. I'm sure you're nervous after his reactions to Prozac. But if you can get to pediatric pain management, it's worth talking about.

It also might be worth taking him to one of the big children's hospitals for a second opinion - Boston Children's, CHOP, Cincinnati Children's have the biggest IBD programs. They all also have pediatric pain programs.

Poor little guy. Sending him big hugs.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
08-19-2017, 12:52 PM   #33
mirandapresley
 
Join Date: Jul 2017
My daughter did the pediatric pain management program at Cleveland Clinic. We loved it!! That might be another one to look at it.

It taught her a lot. She has IBD and arthritis, but because she had been inflamed for so long, her body kept sending pain signals, long after the IBD and arthritis were (somewhat) well controlled.

So she was in a LOT of pain, very anxious, up all night (every single night) etc.

It was really a wonderful program and she learned a lot.

But they won't diagnose your kiddo there, so I would only do it after you've fully investiagted the pain - with the MRE/pillcam etc.

The other pain meds we tried (non-opioids) were Gabapentin and Lyrica. Those might also be an option. I'm sure you're nervous after his reactions to Prozac. But if you can get to pediatric pain management, it's worth talking about.

It also might be worth taking him to one of the big children's hospitals for a second opinion - Boston Children's, CHOP, Cincinnati Children's have the biggest IBD programs. They all also have pediatric pain programs.

Poor little guy. Sending him big hugs.
Thanks, I will look into that, it would definitely be closer. The upside of Mayo is that we have family there we could stay with, because three weeks in a hotel would get really pricey!

I'm crossing my fingers that the MRE or pill cam give us answers. If not, I will keep pushing and take him wherever I need to until they figure it out!
08-19-2017, 12:55 PM   #34
mirandapresley
 
Join Date: Jul 2017
[QUOTE=Maya142;986319]

It taught her a lot. She has IBD and arthritis, but because she had been inflamed for so long, her body kept sending pain signals, long after the IBD and arthritis were (somewhat) well controlled.

So she was in a LOT of pain, very anxious, up all night (every single night) etc.
QUOTE]

It helps so.much to know other people have gone through this and come out ok. Almost every night he has had terrible panic attacks and begged me to take him to the ER, convinced he is going to die. This whole ordeal really flipped a switch and made him not just anxious, but full on neurotic. Last night was the first night he didn't have one. He woke up and came into our room to sleep, but there was not his usual frantic panicking, so it is a good step!
08-19-2017, 01:55 PM   #35
Maya142
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We stayed in the Ronald McDonald house - it was great! It's much, much cheaper than a hotel.

My kiddo did not have panic attacks, but she used to be very anxious. Seeing a psychologist really helped her. She is now able to keep the anxiety under control and knows what to do when she is in a lot of pain.

For us, distraction helps - she will watch TV or listen to audiobooks. She always falls asleep using either a relaxation app (iSleepEasy was the one recommended by the pain program) or listening to audiobooks (Harry Potter is a favorite)! That way she is focusing on something other than the pain.

Her anxiety was never as bad as your son's and for us, the main issue was pain, but anxiety DEFINITELY made it worse. She was older and we knew what the problem was, which I think helped.

It must be very hard for your poor kiddo to have pain and not understand what is going on. Has anyone ever explained pain syndromes to him? Let me see if I can find an easy way for you to explain. With a pain syndrome, one of the things they teach the kids is that the pain is not dangerous, and once the child understands that, that really helps with the anxiety portion of it.

https://docs.chocchildrens.org/cause...tion-syndrome/

http://www.chop.edu/conditions-disea...-syndrome-amps

http://stopchildhoodpain.org/faqs/ca...mplified-pain/
08-19-2017, 02:00 PM   #36
Maya142
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How often is he seeing a psychologist? He might need more frequent visits to help get some of the anxiety under control. We went weekly for quite a while, but I know there are kids who need to be seen twice a week or even more often.

I think if you cannot find a cause for the pain, he'd probably be a very good fit for a pain program because then he will get both individualized psychotherapy (CBT, biofeedback etc.) and other kinds of therapy for many hours a day to help get him back to a normal life. These programs are really meant for kids who are not able to function normally because of the way pain is impacting their lives. Some are inpatient and others are day programs.

They don't take the pain away, but they teach kids who to cope with the pain and how to live well with it.

My daughter goes to college, swims, hangs out with friends and does all this despite the pain. Her case is a bit more complicated because she has severe juvenile arthritis as well as IBD, Gastroparesis and several other illnesses, so we do have to work around that.

But she does her best to live as normally as possible, given the circumstances. The pain program really helped her do that.
08-19-2017, 02:05 PM   #37
mirandapresley
 
Join Date: Jul 2017
Wow, thank you for the links, that is some great information. No, nobody has really addressed that at all with him, they just always talk to him condescendingly, like, "How are things at school? Are you worried about homework?" I know they mean well, but it really upsets him because he feels like they aren't acknowledging his pain is real, they seem to want to attribute it all to psychological issues.

I have tried to explain the stomach issues started first, years ago, long before the depression and anxiety, and when they weren't able to find the cause (cause they didn't check for celiac) he became more and more anxious and depressed. Now it is his default response- when he feels abdominal pain, panic sets in, because I think subconsciously he thinks it is happening all over again. His counselor diagnoses him with PTSD from his initial illness, which makes sense.

That pain amplification article really describes his situation perfectly though. If the GI doesn't find anything, we will see a rheumatologist. He has always reacted strongly to even slight touches, and we actually thought he may have mild autism because of it. They tested him though and decided it was sensory processing disorder, because he also freaks over loud noise and bright lights. But this article really would explain what has happened to him better. Thank you for the input!
08-19-2017, 02:11 PM   #38
mirandapresley
 
Join Date: Jul 2017
How often is he seeing a psychologist? He might need more frequent visits to help get some of the anxiety under control. We went weekly for quite a while, but I know there are kids who need to be seen twice a week or even more often.

I think if you cannot find a cause for the pain, he'd probably be a very good fit for a pain program because then he will get both individualized psychotherapy (CBT, biofeedback etc.) and other kinds of therapy for many hours a day to help get him back to a normal life. These programs are really meant for kids who are not able to function normally because of the way pain is impacting their lives. Some are inpatient and others are day programs.

They don't take the pain away, but they teach kids who to cope with the pain and how to live well with it.

My daughter goes to college, swims, hangs out with friends and does all this despite the pain. Her case is a bit more complicated because she has severe juvenile arthritis as well as IBD, Gastroparesis and several other illnesses, so we do have to work around that.

But she does her best to live as normally as possible, given the circumstances. The pain program really helped her do that.
He was going twice a week, but school started this week so we had to drop it to one time a week. I'm not impressed with the therapist though, I think we may have to shop around for a new one. He has seen a lot of them in the past, and they never seemed to help any with the depression or anxiety. he absolutely hates going. I don't think any of them have ever addressed his pain issues though.
08-19-2017, 02:25 PM   #39
Maya142
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It took us 3 tries to find a psychologist. My daughter REALLY resisted going. Her GI insisted she absolutely had to, so in the end, M went. She complained and hated it for a while, but within a month or two, she realized it was helping her.

We went with the psychologist who her GI recommended, who works with kids with IBD and other chronic illnesses. She is actually in the GI dept. and is used to working with kids with chronic GI issues.

I would recommend one for your son who works with kids with chronic pain. He has been through a lot. There are pain psychologists - they are just hard to find. Generally big children's hospitals have them. We drive over an hour each way to see her psychologist. It is tough but very necessary.

It has been an incredible help for my daughter - she has had 8 hospitalizations in roughly two years and has had a very hard time - it seems like each year she ends up with a several new diagnoses. Many traumatic procedures, including an NJ tube for 3 months, G and J tube surgeries, 25+ tube changes, steroid injections into hip, heel, elbow, knee, SI joints (6 times) and the list goes on.

But she has been able to deal with it well (relatively well anyway - she is human!), because she has help.

The pain is one of his main issues so it needs to be addressed. He wouldn't be so anxious if he wasn't in so much pain.

It took a LONG time to find the right healthcare team. You have to keep looking, if you're not comfortable with the specialists you have. Sometimes that means driving quite a bit. It's tough but will make all the difference you have specialists who can care for your son properly.
08-19-2017, 02:31 PM   #40
Maya142
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If you can get him to one of the big children's hospitals - Cincinnati Children's or even Cleveland Clinic, I'd have him seen by multiple specialties there - GI, maybe rheumatology as well as someone in pain management so they can see if a pain program would help.

For the programs, generally you have to try outpatient psych, and PT, but if the child is in very bad shape, they might skip that. There is an evaluation, where you see a doctor (usually pain management or physiatrist, a psychologist and a PT/OT. Then they tell you if the program can help your child.

There are usually waiting lists, so it's a whole process.

Generally the pain programs do not do diagnosis though - he needs all the other stuff ruled out by GI (such as IBD) before they can diagnose a pain syndrome.

The GI version of pain amplification is sometimes called visceral hyperalgesia. We also met kids there with abdominal migraines. Some kids had IBS. All different ways of saying pain amplification...but you do need a GI to rule out other causes, since he did have gastritis show up on a scope.

I'm going to tag my little penguin, since she may have more info.
08-19-2017, 02:46 PM   #41
mirandapresley
 
Join Date: Jul 2017
If you can get him to one of the big children's hospitals - Cincinnati Children's or even Cleveland Clinic, I'd have him seen by multiple specialties there - GI, maybe rheumatology as well as someone in pain management so they can see if a pain program would help.

For the programs, generally you have to try outpatient psych, and PT, but if the child is in very bad shape, they might skip that. There is an evaluation, where you see a doctor (usually pain management or physiatrist, a psychologist and a PT/OT. Then they tell you if the program can help your child.

There are usually waiting lists, so it's a whole process.

Generally the pain programs do not do diagnosis though - he needs all the other stuff ruled out by GI (such as IBD) before they can diagnose a pain syndrome.

The GI version of pain amplification is sometimes called visceral hyperalgesia. We also met kids there with abdominal migraines. Some kids had IBS. All different ways of saying pain amplification...but you do need a GI to rule out other causes, since he did have gastritis show up on a scope.

I'm going to tag my little penguin, since she may have more info.
So I have been considering this- Mayo works that way. You go in and see a dozen specialists and have every test under the sun all within a few days. I am so tired of waiting a month for an appointment, then another month for a test , then a week for results, then another month for the next test, and so on.


it is like they don't understand what it means to be in pain all day, every day!

So, if we were to go to one of those Children's hospitals you mentioned, how does one go about getting in? Do you need a referral? Who do you schedule with when you don't have a diagnosis? Do they automatically schedule you with multiple doctors, or is it more of the same waiting for appointments? Especially if I end up pulling him out of school and driving 7-8 hours to do this, having to make multiple trips, weeks or months apart, would not be a big help. I appreciate any advice you can provide.
08-19-2017, 06:10 PM   #42
Maya142
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When we went to Boston Children's for the pain rehab evaluation, they scheduled everything for us over two days (the pain eval - with psych, PT, OT and a pain management doctor was on one day, the second day we saw rheumatology).

But on other trips, I have just scheduled appts. in different departments over 1-2 days several months in advance.

Generally, for the hospitals with big GI depts. there will be a second opinion coordinator:
http://www.chop.edu/centers-programs...econd-opinions

I would go through that since you want it done as soon as possible. Do expect a wait. Sometimes you are lucky and can get it scheduled quickly, other times it can take 6 weeks to 3 months.

For the pain program evaluation, we waited about 4-6 weeks, I think.
08-19-2017, 06:49 PM   #43
mirandapresley
 
Join Date: Jul 2017
When we went to Boston Children's for the pain rehab evaluation, they scheduled everything for us over two days (the pain eval - with psych, PT, OT and a pain management doctor was on one day, the second day we saw rheumatology).

But on other trips, I have just scheduled appts. in different departments over 1-2 days several months in advance.

Generally, for the hospitals with big GI depts. there will be a second opinion coordinator:
http://www.chop.edu/centers-programs...econd-opinions

I would go through that since you want it done as soon as possible. Do expect a wait. Sometimes you are lucky and can get it scheduled quickly, other times it can take 6 weeks to 3 months.

For the pain program evaluation, we waited about 4-6 weeks, I think.
Thanks, that is kind of what Im thinking. Scheduling now and if they figure it out by then, I can cancel.
08-21-2017, 04:03 AM   #44
Catherine
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That pain amplification article really describes his situation perfectly though. If the GI doesn't find anything, we will see a rheumatologist. He has always reacted strongly to even slight touches, and we actually thought he may have mild autism because of it. They tested him though and decided it was sensory processing disorder, because he also freaks over loud noise and bright lights. But this article really would explain what has happened to him better. Thank you for the input!
My middle daughter has dx of Asperger and anxiety disorder. She was dx late at 13 years. It may amazining how much anxiety improve with the dx. She alway felt she was different and the dx help understand herself.

She still hates loud noises, bright lights and being touched.

Watch where he going on the internet, my daughter started talking to people with anxiety issues and it made her own anxiety much much worse. It was a scary time for us.
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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)
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