Celiac son with possible gastric Crohns- how far do I pursue this?

[mirandapresley]

Hi, I am new here, and the mother of a 13 year old boy who has been dealing with chronic abdominal pain, vomiting and occasional diarrhea for almost a year. This is going to be a long post, but I really appreciate any advice you can give me.

Background- he was diagnosed with celiac disease in 2011, and after about a year on a gf diet, the abdominal symptoms he had resolved. He has been reasonably healthy since then, with only minor setbacks from accidental glutenings. Myself and his sister also have celiac, so our entire house is gluten free. There is zero possibility that he is being exposed to gluten. Definitely not sneaking it, he is afraid to eat anywhere but home.

About a year ago, he started having constant abdominal pain, which worsened with eating. Frequently, he vomited within minutes of eating solid food. Lost about 10 lbs. Took him to a GI, he tested his Ttg which was elevated and said he must have been exposed to gluten somehow. This seemed logical, so we became even more vigilant, took him off processed gf products in case there was some cross contamination. X ray also showed serious constipation so he was prescribed Miralax for a few weeks.

A few months went by, issues continued, tested again and his Ttg had gone up higher and he continued to lose weight, which made the GI suspicious of Crohns. DGP, which is specific for Celiac was negative both times, which indicates something besides gluten is raising the Ttg. (the GI dismisses that possibility the first time however.) Son also has mild persistent vitamin deficiencies, severely pitted and ridged fingernails and stunted growth. Height and weight are in the 20th% despite the fact that both myself and his dad are near six feet.

His CRP was normal, and Calprotectin test was also normal, so GI said it wasn't Crohns. He ordered a HIDA scan to check his gallbladder...it was fine.

Suddenly, his symptoms disappeared. Vanished. For 2 months.

About a month ago, they returned with a vengeance. Lost another 10 lbs. So, last week they did a colonoscopy and endoscopy. Took 8 biopsies.

I read the pathology report but haven't met with the Dr yet. Apparently, everything looked normal though. Removed a single polyp which pathology classified as an inflammatory polyp, which are strongly associated with Crohns and UC. Mild chronic gastritis with follicular characteristics but otherwise normal pathology.

I think his symptoms seem suggestive of gastric Crohns, which I understand is difficult to diagnose without actual stomach resection, and is extremely rare. The inflammatory polyp also raises a red flag for Crohns- but as there was only ONE polyp, that seems odd. We see the GI on Wednesday, and I have a feeling he is going to say nothing is wrong and tell him to take omeprazole for the gastritis. (we already tried that, didnt help)

My son is very much a hypochrondriac, and I do think some of his symptoms are somatic, as he suffers from severe anxiety. However, because of the polyp and unexplained gastritis, combined with the elevated Ttg, the pitted nails and stunted growth, I feel like there is something more going on then just somatic symptoms. But,I don't want to be one of those people who tells a doctor how to do their job, and I don't want to subject my son to unnecessary procedures.

I know gastric Crohns is really, really rare...but his symptoms- epigastric pain, worse after eating, vomiting after eating- lines up perfectly with it.

So, I am hoping some of you may have had similar experiences and can advise me on the likelihood that this is Crohns and whether I should push for more testing.Thank you for reading such a long post!

 

[my little penguin]

Does he see a therapist regularly for his anxiety ?
Is he on anxiety meds ? Doing cbt?
Anything stressful for him at home /school recently that wasn't there when he was fine ???

Have they done an MRE or pill cam ?
Imaging the small bowel can be helpful

Tracking calorie intake (my fitness pal app -free) so you can see if he is taking in enough to gain and grow but isn't
Endo would be a good rock to visit
Rheumo as well due to nail pitting etc...

Anxiety does not cause stunted growth

I would follow the GI lead
But ask about possible imaging -pros and cons
It's a fine line to walk

Cyclic vomiting syndrome can also be a thing
Plus many other GI disorders
Including anxiety can cause vomiting /abdominal pain

Has he tried adding formula -peptamen jr etc...
To see if the type of calorie changes how much is absorbed

 

[Maya142]

Has he had a gastric emptying test? Gastroparesis can cause those symptoms - pain after eating, vomiting after eating, early satiety (saying they're full after a few bites), nausea, weight loss.

The other thing would be an MRE/pillcam to look at his small bowel to make sure Crohn's is not hiding in there.

I would also make sure he is seeing a psychologist. Anxiety can cause a lot of physical symptoms. It does sound like there is something else going on too, which you should definitely pursue, but CBT would help with a lot of his anxiety and possibly with some of his symptoms.

My daughter has several chronic illnesses -- IBD, Gastroparesis and arthritis - and she sees a psychologist who specializes in kids with chronic illnesses.

It has made an incredible difference to her anxiety and how she copes with the many medical things in her life.

Does he take NSAIDs for anything by any chance? Advil or Aleve? Those can also cause gastritis and stomach issues.

My daughter has had stomach inflammation for a long time with her Crohn's. We manage it a PPI and Carafate. Bland food also helps.

In terms of growth, seeing a nutritionist might help. That way you can figure out if he's getting enough calories and can help figure out how to add in more. Formula is a good way - kids with IBD often need to drink Pediasure or Boost or Peptamen Jr to keep their weight up. The most palatable formulas would be polymeric formulas - like Boost, Ensure or Pediasure.

 

[mirandapresley]

Thanks for the replies. He just started counseling a few weeks ago, though in the past it hasn't been helpful for him. Always when he was glutened, it would trigger massive depression and anxiety, which would pass after a few months. He has been dx with PTSD from his initial long illness. They tried him on Prozac a few weeks ago, a few days after he went up to 20 mg he had the allergic reaction. The ER said it was to the compazine (which he has taken many times without issue) but I suspect the Prozac. It was a severe dystonic reaction, complete spasms of trunk and neck and face stretched in a grimace, unable to speak or straighten up. He was at therapy at the time and they called an ambulance. Gave him IV Benadryl and it stopped within minutes. However, he was extremely anxious and terrified it would happen again. The prozac had lifted the depression, but amped the anxiety, and he was having a few side effects (face twitching, worsening belly pain, diarrhea, panic attacks) so now he was really freaked, thought he was having a heart attack, felt like his muscles were seizing again (though they did not visibly do so) two more trips to the ER. I decided to stop the Prozac and let him detox a bit so we could figure out what was causing what. They gave him hydroxyzine for anxiety which has helped quite a bit. We are planning on trying the Prozac again in a few weeks.

He has not done a gastric emptying test, or the pill cam yet. I was considering requesting both, and possibly an MRE as EGD and Colonoscopy can't reach the small bowel...I just don't know if I am over reacting- it is helpful to know others are thinking the same thing. He has an appt with an endocrinologist in a few weeks to check on reasons for the slow growth. His calorie intake and nutrition are definitely far too low as he has been unable to eat much for almost a year. He is very phobic about food to the point of anorexia. He was eating just a protein smoothie in the morning, and a sandwich in the afternoon. Nothing else. For months. Oftentimes, not even the sandwich because he would throw it up. I recently started giving him Ensure and that seems to have put a few lbs back on. He wants to eat, just within a few bites he puts it down because he says he feels sick or it hurts too much.

It's such a chicken/egg scenario...the anxiety worsens the stomach pain, the pain worsens the anxiety... I can tell the doctors think I am one of "those" moms who obsess over their kids health and make them think they are sick. I'm really trying not to be. I have tried to downplay this from the beginning, convincing him it was just another glutening, it would pass, etc, etc. It hasn't passed. He just gets worse.

Dealing with the ongoing stomach issue is hard enough- he missed a ton of school last year, and they were threatening truancy proceedings. He LIKES school, wasn't avoiding it, gets good grades. Is excited and can't wait to go back as he has had a boring, lonely summer (everyone else here seems to be loaded and sent their kids away to $2000 a month summer camps!) So he hasn't seen his friends much. I do not want this school year to be like last, with him missing 1-2 days every week!

I really appreciate your suggestions. Thank you.

 

[mirandapresley]

Oh, I forgot, no, he does not use any NSAIDs or aspirin. He is really phobic about meds so rarely takes anything- only zofran or compazine when the nausea is really, really bad. (Stopped the compazine since the reaction however)

 

[my little penguin]

Can you ask for a different ssri like lexapro or Zoloft etc... especially if he reacted to the Prozac

Second gastroparesis testing or MRE
But first see if you can get more ensure in him
And get the anxiety a little more settled
Eating the right amount of calories can make a really big difference
And if testing is stressing him out
Then ...
Possible getting the right meds and cbt plus proper nutrition
Maybe
I know for ds when he is formuka only he needs 2200-2600 calories a day
He is 13 as well
He drinks half his calories from neocate jr due to gastroparesis
But is a healthy weight and height

 

[mirandapresley]

Can you ask for a different ssri like lexapro or Zoloft etc... especially if he reacted to the Prozac

Second gastroparesis testing or MRE
But first see if you can get more ensure in him
And get the anxiety a little more settled
Eating the right amount of calories can make a really big difference
And if testing is stressing him out
Then ...
Possible getting the right meds and cbt plus proper nutrition
Maybe
I know for ds when he is formuka only he needs 2200-2600 calories a day
He is 13 as well
He drinks half his calories from neocate jr due to gastroparesis
But is a healthy weight and height

He has tried Zoloft in the past (reacted badly) and welbutrin (didn't have any effect) Since we aren't sure if he reacted to the Prozac, and if he did, was it just at that dosage, or the compazine, we are willing to try the 10 mg again, simply because it worked very quickly and amazingly for the depression, and the increased anxiety is a common side effect that often goes away after a month or two. His depression was extremely severe, to the point he was threatening suicide and was put in a day treatment program for several weeks, which he just completed, so keeping that at bay is a priority obviously.

I am focused on trying to get nutrition into him. He will be 14 in September and is only 5' and 95 lbs, so he is very self conscious that he is smaller than his peers, who have suddenly all shot up. The testing doesn't give him anxiety, in fact, he keeps begging for them to cut him open so they can see what is going on. He is desperate to feel better and convinced that he never will. He has a pretty low pain tolerance anyway, so his anxiety over this I think increases whatever pain he is having ten-fold. I just want him to feel better, mentally and physically, and am exhausted from trying to navigate all of this, reassure him constantly, and work full time.

 

[Maya142]

I would also talk to a psychiatrist about his reaction and a different anti-depressant. There are several options and if he's so terrified to take Prozac again, that's not going to help anything. And it does sound like he had a bad reaction.

My daughter has done REALLY well on Lexapro, along with CBT. She was a very anxious kid and is now doing MUCH better, despite very difficult medical circumstances - many hospitalizations, procedures, surgery etc.

My kiddo needed about 2400 calories to gain weight. Both her GI and nutritionist were surprised she needed that much since she is so small - 5'2 and was 85 lbs or so at the time. She was also 16-18 and was done growing, but she really did need a lot of calories to gain weight. In her case, her Gastroparesis was severe enough that she needed a feeding tube placed into her small bowel. With that, she was finally able to gain weight and went from being severely malnourished to a normal kid.

The first step, though, is definitely a gastric emptying test.

 

[mirandapresley]

I would also talk to a psychiatrist about his reaction and a different anti-depressant. There are several options and if he's so terrified to take Prozac again, that's not going to help anything. And it does sound like he had a bad reaction.

My daughter has done REALLY well on Lexapro, along with CBT. She was a very anxious kid and is now doing MUCH better, despite very difficult medical circumstances - many hospitalizations, procedures, surgery etc.

My kiddo needed about 2400 calories to gain weight. Both her GI and nutritionist were surprised she needed that much since she is so small - 5'2 and was 85 lbs or so at the time. She was also 16-18 and was done growing, but she really did need a lot of calories to gain weight. In her case, her Gastroparesis was severe enough that she needed a feeding tube placed into her small bowel. With that, she was finally able to gain weight and went from being severely malnourished to a normal kid.

The first step, though, is definitely a gastric emptying test.

I will definitely talk to the GI about that Wednesday, gastroparesis was something I hadn't considered. I am anxious about him trying an antidepressant again too. It is so difficult to know if the symptoms he has are typical mild side effects, or if something is really wrong, because to him EVERYTHING is cause for panic. Today he was obsessing over red marks on his fingers (that were visible only to him) convinced something might be wrong. I have no way of knowing if a medicine is causing actual chest pain, shortness of breath, numbness and tingling, etc...because his anxiety over it will make him think it is. (and no, I never let him read the side effect profiles, no reason to feed the beast!)

I'm just so very frustrated right now. Seems like trying to fix one problem just exacerbates another, and I feel like the doctors are getting tired of seeing me and think I have Munchausen's or something.

We went through all of this exact same crap when he was diagnosed with celiac- took two years of being told he had acid reflux, was just constipated, and finally, that he was fine and his mother was causing him anxiety that made him think he was sick, before they FINALLY scoped him and found celiac. I felt vindicated and he got better. Now, it is like a replay of that same nightmare.

 

[Maya142]

I think getting the anxiety under control is going to be key to figuring out what is actually going on. It's hard because anxiety can cause a lot of physical symptoms. It can definitely increase pain.

If he is too afraid to eat, then it could be even causing the stunted growth and malnutrition.

We never had increased anxiety with anti-depressants - my daughter has tried Lexapro, Zoloft and Wellbutrin. Wellbutrin can depress appetite so you probably don't want him on that anyway.

Given his reaction to the Prozac, I'd definitely discuss the pros and cons with the doc - my worry will be that you'll never know if it is working because he's going to panic the moment you restart it.

The other option would be an anti-anxiety drug for the short-term while you wait for an anti-depressant to kick in. Something like Ativan. It's not something they give kids easily, but for very anxious kids, it's sometimes needed. It sounds like he is getting very worried and that certainly isn't going to help anything.

Poor kiddo . I bet you're frustrated!!

Definitely stick with the counseling. Sometimes it can take some time to find the right psychologist. My daughter saw two that didn't really work and then the third was perfect since she was used to working with kids with chronic illnesses.

The pain after eating, getting full easily etc. does sound a LOT like Gastroparesis to me. So I'd definitely ask about that. It also goes hand in hand with reflux, which then could cause gastritis.

 

[sabrina123]

- Agree on pill cam. my daughter had perfect labs, but crohns was very clear in cam results.

- Have you checked on any other food sensitivities? My GI said lactose sensitivity is often seen with celiacs. My daughter developed many sensitivities (and stopped growing)- and would have vomiting diarrhea, extreme pain, reflux etc quickly after she ate - seemed even as she was eating, she could start feeling it. While we were in the process of diagnosis, we did low lactose, no gluten, no soy, no high fructose, and avoided heavily processed foods - including gluten processed. We did it as a family and were creative - to make sure got calories. Helped when Dad and siblings even felt better. (Our GI also did test her for fructose- you can do breath test for lactose/fructose. We already were 100% sure on lactose). Summer was the easier time to really start this than during the school year.

After a few weeks, It helped to make things a little more stable and get her out of a bad cycle. When diagnosed with crohn's, we continued diet therapy with other crohn's treatment.

Note: Once she stabilized with crohns, we haven't had to be so strict with the diet

 

[pdx]

I agree that an MRE or pillcam would help you decide if you're dealing with IBD. Big hugs to you and your family--I know that none of this is easy. I also have a very anxious kid, and that adds a difficult extra layer to all of our decision-making about her disease and treatment.

 

[Mehita]

Oh my goodness... your description of your son was like reading a bio of my own son! The only difference was we got the Celiac and Crohn's dx at the same time (age 8, now 17). He went GF immediately and felt great and grew for about two years. Then the vomiting started. First monthly or so and we thought it was gluten, but then the vomiting became more and more frequent until it was several times a day, every day. During the first two years, he was not being treated for Crohn's at all. Turned out he had developed a stricture in his small intestine that was only 3 mm in diameter (normal is closer to 3-5cm), hence all the vomiting. Surgery and Remicade have since put him in remission for the last 3 1/2 years.

I'd definitely ask about an MRE. If there is the possibility of a stricture, I don't think a GI would agree to a pill cam at this point. Also ask about cyclic vomiting and gastroparesis. Just bringing up all these questions will show the GI that you've been doing your research and be sure you don't leave until you have explanations on why he/she thinks each is a possibility or not. I was so uneducated when my son was dx and I kick myself for not being more persistent and asking more questions.

Let us know how it goes and good luck!!

 

[mirandapresley]

- Agree on pill cam. my daughter had perfect labs, but crohns was very clear in cam results.

- Have you checked on any other food sensitivities? My GI said lactose sensitivity is often seen with celiacs. My daughter developed many sensitivities (and stopped growing)- and would have vomiting diarrhea, extreme pain, reflux etc quickly after she ate - seemed even as she was eating, she could start feeling it. While we were in the process of diagnosis, we did low lactose, no gluten, no soy, no high fructose, and avoided heavily processed foods - including gluten processed. We did it as a family and were creative - to make sure got calories. Helped when Dad and siblings even felt better. (Our GI also did test her for fructose- you can do breath test for lactose/fructose. We already were 100% sure on lactose). Summer was the easier time to really start this than during the school year.

After a few weeks, It helped to make things a little more stable and get her out of a bad cycle. When diagnosed with crohn's, we continued diet therapy with other crohn's treatment.

Note: Once she stabilized with crohns, we haven't had to be so strict with the diet

Interesting...was her calprotectin negative as well? He agreed to do an MRE and if that doesn't show anything, the pill cam. But he resisted me on both at first and doesn't think it will show anything. Said if it doesn't then I need to accept it is just his anxiety! I wanted to slap him. Anxiety isnt putting his fingernails, making him anemic or raising his Ttg. But he thinks because none of the labs are extremely bad that its "normal" for celiacs. Except for six years we have managed to maintain normal hemoglobin, vitamin levels and negative Ttg. ��

 

[mirandapresley]

Oh my goodness... your description of your son was like reading a bio of my own son! The only difference was we got the Celiac and Crohn's dx at the same time (age 8, now 17). He went GF immediately and felt great and grew for about two years. Then the vomiting started. First monthly or so and we thought it was gluten, but then the vomiting became more and more frequent until it was several times a day, every day. During the first two years, he was not being treated for Crohn's at all. Turned out he had developed a stricture in his small intestine that was only 3 mm in diameter (normal is closer to 3-5cm), hence all the vomiting. Surgery and Remicade have since put him in remission for the last 3 1/2 years.

I'd definitely ask about an MRE. If there is the possibility of a stricture, I don't think a GI would agree to a pill cam at this point. Also ask about cyclic vomiting and gastroparesis. Just bringing up all these questions will show the GI that you've been doing your research and be sure you don't leave until you have explanations on why he/she thinks each is a possibility or not. I was so uneducated when my son was dx and I kick myself for not being more persistent and asking more questions.

Let us know how it goes and good luck!!

Wow, that sounds so much like my son! How did they find the stricture? The Dr reluctantly agreed to do an MRE on the 23rd, and if that doesn't show anything, the pill cam. But if that also doesn't show anything, he basically said he is done with us. I can't tell he thinks I am just an over reacting hysterical mother that spends too much time on the internet. He was so patronizing when he talked to me, told me I need to accept that this is probably just his anxiety. I was so mad. I don't WANT it to be Crohns, I really, really don't...but I know SOMETHING is wrong and I wont stop until we find out what it is.

I also have seen some articles about POTS...and there are some big similarities there as well, so if the GI doesn't find anything, that is my next avenue to check out. I know he has issues with his blood pressure - he has to sit down in the shower or he feels.like he is going to pass out. And apparently POTS can cause nausea and vomiting and the hand tremors he constantly has. I wish there was just a simple blood test for all this crazy stuff!

 

[Maya142]

Did he say anything about the gastric emptying scan? A lot of his symptoms sound like Gastroparesis to me.

For POTS - is his heart rate high when he stands up?

I wonder if it could also be two things - something causing the nails and something causing the GI issues. For example, psoriasis could cause ridged and pitted nails.

How is he doing with his anti-depressant? I feel like once you get the anxiety under control, the doc will take you more seriously. It shouldn't be that way, but I think that's what the situation is right now .

 

[mirandapresley]

Did he say anything about the gastric emptying scan? A lot of his symptoms sound like Gastroparesis to me.

For POTS - is his heart rate high when he stands up?

I wonder if it could also be two things - something causing the nails and something causing the GI issues. For example, psoriasis could cause ridged and pitted nails.

How is he doing with his anti-depressant? I feel like once you get the anxiety under control, the doc will take you more seriously. It shouldn't be that way, but I think that's what the situation is right now .

No, he didn't, but someone else here suggested gastroparesis as well. I figured I would wait until the other tests are done and then if needed, bring it up. The Dr was so annoyed with me, I didn't want to push my luck.

I also wonder if there isnt more than one issue going on. The nail grooves are Beaus Lines, and then he also has pitting, which I think is partly because he picks at h thumbs, because his toenails have the Beaus Lines but not the pitting. Everything I read says Beaus lines on both hands and feet are a sign of systemic disease...so the question is WHAT disease? He had then before he was diagnosed with Celiac, and after going gf, they mostly went away. His nails weren't perfectly smooth, but they looked pretty good. It wasn't until last summer, right before he got sick, that they started getting bad again. Since his hemoglobin and Ttg all changed about the same time, it seems unlikely they aren't connected. Other autoimmune issues could be messing up the nails, but he doesn't have symptoms of the ones that would, other than Crohns. And the other ones would not make him anemic and raise his Ttg.

I have not checked his heart rate, but he complains constantly of it racing and pounding anytime he does any activity- even walking around the mall. He will want to go do something, like go for a hike, and as soon as we set out he gets really nauseous, says he feels like he is going to pass out, and that his heart is racing and pounding. I was attributing it to anxiety before, but it sounds an awful lit like POTS. He sees his pediatrician for a physical Thursday, so I was going to ask her to check his heart rate after standing for 3, 5 and 7 minutes, and if it looks off, maybe order a tilt table test.

Before I was diagnosed with celiac, I had a huge issue with orthostatic hypotension- I literally could not stand more than two minutes or I would pass out. Once I went gf, that went away. So I wonder if I didn't have it as well.

My daughter (another celiac) also went through several years of mystery stomach issues at the same age he is. We blamed it on hormones as they couldn't find a reason for her vomiting and nausea. She also developed an allergy to sunlight and would get hives and rashes. And she had to sit down in the shower. She is almost 19 now, and over the last few years, all of that gradually just went away. Reading about POTS and how it can strike at puberty in both boys and girls, and is linked with autoimmune issues- I really think there is a connection.

We stopped the Prozac today. His depression was so much better, after just a few days, but his anxiety is through the roof, and he is having constant muscle spasms and twitching, so I think we have to try something else unfortunately.

I really appreciate all of the advice and support from everyone. I was a little nervous about posting here since he doesn't have a Crohns diagnosis...I don't want to detract in any way from the suffering if those who know they have Crohns, and I really am hoping he does not have it. There just seems to be a lot of red flags though...

 

[sabrina123]

Interesting...was her calprotectin negative as well? He agreed to do an MRE and if that doesn't show anything, the pill cam. But he resisted me on both at first and doesn't think it will show anything. Said if it doesn't then I need to accept it is just his anxiety! I wanted to slap him. Anxiety isnt putting his fingernails, making him anemic or raising his Ttg. But he thinks because none of the labs are extremely bad that its "normal" for celiacs. Except for six years we have managed to maintain normal hemoglobin, vitamin levels and negative Ttg. ��[/QUOTE

Calprotectin was taken around the colonscopy - pill cam (both showed crohn's) but her calprotectin levels were normal. The GI's we saw - said some kids just don't show in the labs. However, We did have low levels of things like calcium, vitamin D, iron - which I understood probably indicated low absorption. Very slightly elevated sed rate. Since it took a while to definitively diagnosis - looking back at the year of illness, growth did stop. Then when Crohn's got under control, rapid growth

 

[Maya142]

Psoriasis is actually a systemic disease - and inflammation can often cause mild anemia. Same with juvenile idiopathic arthritis or psoriatic arthritis (I know you didn't say he has joint pain, but just as an example).

Has a dermatologist seen his nails?

The racing heart and nausea could certainly be anxiety but I would definitely get his pediatrician to check it out. And his blood pressure. If it's off (HR is very high upon standing for example), then you need to be referred to a cardiologist.

Not sure if POTS would impact his hemoglobin though??

I would also make sure you are tracking his calories - if he can't eat enough, then you may need to supplement with something like Ensure or Boost or Pediasure. Some of his issues could be malnutrition.

Obviously, the malnutrition probably stems from something else (for example, could be Crohn's or Gastroparesis), but until you figure out what that something is, I'd work on getting his weight up.

If it is Gastroparesis or even Crohn's, formula supplements like Boost or Ensure will be easier to digest than food and hopefully will not cause abdominal pain. Liquids tend to be much easier to tolerate. There are lots of flavors he can try.

 

[Maya142]

Sorry - I missed that you have been trying Ensure. I would stick with it, while you're trying to figure everything out, so at least he is getting some good calories.

It is sometimes very hard to get a diagnosis and takes quite a while. Hang in there!!

 

[mirandapresley]

Interesting...was her calprotectin negative as well? He agreed to do an MRE and if that doesn't show anything, the pill cam. But he resisted me on both at first and doesn't think it will show anything. Said if it doesn't then I need to accept it is just his anxiety! I wanted to slap him. Anxiety isnt putting his fingernails, making him anemic or raising his Ttg. But he thinks because none of the labs are extremely bad that its "normal" for celiacs. Except for six years we have managed to maintain normal hemoglobin, vitamin levels and negative Ttg. ��[/QUOTE

Calprotectin was taken around the colonscopy - pill cam (both showed crohn's) but her calprotectin levels were normal. The GI's we saw - said some kids just don't show in the labs. However, We did have low levels of things like calcium, vitamin D, iron - which I understood probably indicated low absorption. Very slightly elevated sed rate. Since it took a while to definitively diagnosis - looking back at the year of illness, growth did stop. Then when Crohn's got under control, rapid growth

Interesting...everything I read said the Calprotectin test was almost never false negative- obviously it sometimes is!

He takes a liquid multi vitamin, liquid zinc, and ferrous sulfate every day, otherwise he ends up deficient as well. But now, despite taking that, he is showing mild zinc and copper deficiency- his iron is good but he is slightly anemic. So something has changed.

 

[mirandapresley]

Psoriasis is actually a systemic disease - and inflammation can often cause mild anemia. Same with juvenile idiopathic arthritis or psoriatic arthritis (I know you didn't say he has joint pain, but just as an example).

Has a dermatologist seen his nails?

The racing heart and nausea could certainly be anxiety but I would definitely get his pediatrician to check it out. And his blood pressure. If it's off (HR is very high upon standing for example), then you need to be referred to a cardiologist.

Not sure if POTS would impact his hemoglobin though??

I would also make sure you are tracking his calories - if he can't eat enough, then you may need to supplement with something like Ensure or Boost or Pediasure. Some of his issues could be malnutrition.

Obviously, the malnutrition probably stems from something else (for example, could be Crohn's or Gastroparesis), but until you figure out what that something is, I'd work on getting his weight up.

If it is Gastroparesis or even Crohn's, formula supplements like Boost or Ensure will be easier to digest than food and hopefully will not cause abdominal pain. Liquids tend to be much easier to tolerate. There are lots of flavors he can try.

I didn't know inflammation could cause anemia...that definitely raises some other possibilities then. No, he doesn't complain of joint pain, and he doesn't really have any other skin issues, other than this winter his hands were cracked and bleeding because he obsessively washed them and they dried out. When his stomach issues started up, he suddenly developed weird phobias...checking and rechecking locks, compulsive hand washing, germophobia....it was really odd as that was not him at all. That gradually changed to just general anxiety.

He drinks several bottles of Ensure every day...that is pretty much all he can keep down. I tried giving him bean soup the other day but he threw it up. He did manage to keep scrambled eggs down yesterday, but said that they made his stomach hurt really bad. I don't get why the doctor can't seem to understand that not being able to eat solid foods is a serious issue! No, he isnt wasting away, but that is only because he is drinking 5 or six bottles of ensure a day!

We haven't seen a dermatologist, but I've been thinking about it if we don't get any other clear answers. Or maybe a rheumatologist if it seems like it is some other autoimmune issue. It's just so overwhelming, and the Dr bills are racking up quickly. We have decent insurance thankfully, but there is still deductibles and co-pays and they have almost maxxed out our flex benefits. I'm trying to not go overboard in taking him to specialists.

 

[mirandapresley]

I forgot...when the Dr palpated his stomach, when he got to the mid-low right hand side, my son screamed and grabbed his hand away. He complained that it hurt when he did the same thing last visit, and the Dr seemed to not even take notice. This time he paid attention, but his attitude seems to me that he felt he was faking it. Except, that is exactly where the small bowel is, the one place they haven't seen yet, and my son had no idea of what it was. I know he was not faking that reaction- it was completely reflexive.

 

[Maya142]

So lower right quadrant pain is very common with Crohn's. Generally that is the terminal ileum, but it could also be the small bowel (maybe higher up) where they couldn't see.

I'm glad they are doing an MRE and pillcam - if Crohn's is hiding in the small bowel, hopefully you will be able to find it.

You may also want to consider a second opinion GI, if you don't like/trust the one you are seeing.

Rheumatology is a good idea because they are used to "grey areas" and sometimes rheumatic diseases have GI manifestations.

But the not being able to eat solid food really sounds like Gastroparesis to me...really reminds me of my daughter, who lost 25 lbs (and she was thin to begin with) and got very malnourished. She could not tolerate anything through her stomach when her Gastroparesis was really bad - even NG tube feeds (which go into the stomach) made her throw up.

Her Gastroparesis is severe - she couldn't even tolerate liquids through her stomach, but generally if your kiddo is tolerating liquids but throwing up solid foods, that is a sign there could be a motility issue.

Not being able to tolerate solid food is a BIG issue and one the GI should not be ignoring!!

 

[mirandapresley]

So lower right quadrant pain is very common with Crohn's. Generally that is the terminal ileum, but it could also be the small bowel (maybe higher up) where they couldn't see.

I'm glad they are doing an MRE and pillcam - if Crohn's is hiding in the small bowel, hopefully you will be able to find it.

You may also want to consider a second opinion GI, if you don't like/trust the one you are seeing.

Rheumatology is a good idea because they are used to "grey areas" and sometimes rheumatic diseases have GI manifestations.

But the not being able to eat solid food really sounds like Gastroparesis to me...really reminds me of my daughter, who lost 25 lbs (and she was thin to begin with) and got very malnourished. She could not tolerate anything through her stomach when her Gastroparesis was really bad - even NG tube feeds (which go into the stomach) made her throw up.

Her Gastroparesis is severe - she couldn't even tolerate liquids through her stomach, but generally if your kiddo is tolerating liquids but throwing up solid foods, that is a sign there could be a motility issue.

Not being able to tolerate solid food is a BIG issue and one the GI should not be ignoring!!

Wow, that had to be so hard for her! I will definitely ask about a scan. I know they suspected gastroparesis before he was dx with celiac. When they did his first endoscopy, he had undigested food in his stomach, even though he had been fasting.

 

[mirandapresley]

So lower right quadrant pain is very common with Crohn's. Generally that is the terminal ileum, but it could also be the small bowel (maybe higher up) where they couldn't see.

I'm glad they are doing an MRE and pillcam - if Crohn's is hiding in the small bowel, hopefully you will be able to find it.

You may also want to consider a second opinion GI, if you don't like/trust the one you are seeing.

Rheumatology is a good idea because they are used to "grey areas" and sometimes rheumatic diseases have GI manifestations.

But the not being able to eat solid food really sounds like Gastroparesis to me...really reminds me of my daughter, who lost 25 lbs (and she was thin to begin with) and got very malnourished. She could not tolerate anything through her stomach when her Gastroparesis was really bad - even NG tube feeds (which go into the stomach) made her throw up.

Her Gastroparesis is severe - she couldn't even tolerate liquids through her stomach, but generally if your kiddo is tolerating liquids but throwing up solid foods, that is a sign there could be a motility issue.

Not being able to tolerate solid food is a BIG issue and one the GI should not be ignoring!!

I really liked this GI at first...he seemed very thorough and confident that we would get him better. But now he just seems dismissive. He is at UVA, so is supposed to know what he is doing, but I may get a second opinion. If anyone is in Virginia and can recommend a peds GI, please do!

 

[Maya142]

Wow, that had to be so hard for her! I will definitely ask about a scan. I know they suspected gastroparesis before he was dx with celiac. When they did his first endoscopy, he had undigested food in his stomach, even though he had been fasting.

That is a BIG red flag for Gastroparesis. I assume he was NPO after midnight and at least 7-8 hours later, there was still food??

So with Gastroparesis, they do a gastric emptying scan. The kiddo eats a meal - usually scrambled eggs and toast, which has a radioactive tracer mixed in.

If MORE than 10% of the meal is left after 4 hours, then Gastroparesis (delayed gastric emptying) is diagnosed.

It is not a difficult test - kind of long and boring - but not too hard. The key is keeping down the meal so they can actually do the test!!

My daughter is doing much better now - she is on motility medication and her Gastroparesis has become less severe. She gained back all the weight she had lost (she was so severely underweight she developed an arrhythmia, Refeeding syndrome and was hospitalized several times just for her weight). She is able to eat much more and is a healthy weight.

She still has a J tube (goes into her small bowel) but does not depend on it because she can eat again.

 

[mirandapresley]

That is a BIG red flag for Gastroparesis. I assume he was NPO after midnight and at least 7-8 hours later, there was still food??

So with Gastroparesis, they do a gastric emptying scan. The kiddo eats a meal - usually scrambled eggs and toast, which has a radioactive tracer mixed in.

If MORE than 10% of the meal is left after 4 hours, then Gastroparesis (delayed gastric emptying) is diagnosed.

It is not a difficult test - kind of long and boring - but not too hard. The key is keeping down the meal so they can actually do the test!!

My daughter is doing much better now - she is on motility medication and her Gastroparesis has become less severe. She gained back all the weight she had lost (she was so severely underweight she developed an arrhythmia, Refeeding syndrome and was hospitalized several times just for her weight). She is able to eat much more and is a healthy weight.

She still has a J tube (goes into her small bowel) but does not depend on it because she can eat again.

Yup, he hadn't eaten since supper the night before. However, that was 6 years ago, and his issues seemed to resolve once he was gf- and celiac can cause delayed gastric emptying. Because they also did a colonoscopy this time, he had to fast for basically two days, so the endoscopy did not show any food left- so know way if knowing if it would have been the same scenario. I have been reading up on gastroparesis...it does certainly sound like him. I will definitely follow up on this!

 

[mirandapresley]

So, no update yet as the MRE is not until Wednesday, but my poor kiddo continues to be miserable, and I am sooo hoping for some answers. His depression and anxiety have been really awful, and his pediatrician is acting like I am a hypochondriac and I need to accept anxiety is causing the stomach pain. I am beyond frustrated with them, and it has been so hard to deal with this. Waiting weeks/months for an appt or test, meanwhile he suffers 24 hrs a day and begs me to kill him. They really don't understand what it is like. The good news is that he just started on Lexapro, and third try seems to be the charm because in just a few days there has been a huge improvement in his mood. The anxiety is still bad, but no worse at least, and he is tolerating the side effects much better than the Prozac or Zoloft.

Meanwhile, he is complaining that his intestines feel like they are being stabbed by tiny needles. I was wondering if that is a typical description for pain caused by Crohns?

 

[Maya142]

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.

 

[mirandapresley]

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.

 

[Maya142]

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.

 

[mirandapresley]

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!

 

[mirandapresley]

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!

 

[Maya142]

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/causes-and-treatment-for-pain-amplification-syndrome/

http://www.chop.edu/conditions-diseases/amplified-musculoskeletal-pain-syndrome-amps

http://stopchildhoodpain.org/faqs/can-stomach-problems-be-related-to-amplified-pain/

 

[Maya142]

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.

 

[mirandapresley]

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!

 

[mirandapresley]

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.

 

[Maya142]

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.

 

[Maya142]

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.

 

[mirandapresley]

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.

 

[Maya142]

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-program...logy-hepatology-and-nutrition/second-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.

 

[mirandapresley]

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-program...logy-hepatology-and-nutrition/second-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.

 

[Catherine]

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.