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Undiagnosed Kids

C

crohnsinct

Well-known member
Well obviously I am not a doctor but I can tell you your situation sounds eerily similar to the situation we had with our oldest daughter. She does not have Crohn's. She had encopresis. That is when they are so constipated that the softer stool actually leaks out around the hard stuff.


We also went to many docs and tried many things. Of course you have to figure out why they are constipated to begin with but the first step for us was to get her cleaned out. This issue lasted until she was 12!

So our doc had us use Miralax to make her poop so soft that she couldn't possibly willing hold it. Her muscles were very out of shape from not working properly for all those years. She had to regain muscle control and strength.

With that and diet changes and some behavior investigations...we found out this all started because she "learned" to hold her BM's. She tended toward constipation to begin with, so her bathroom trips lasted a while. I ws a working mom and always rushing around and saying, "hurry we are going to be late" Knowing a trip to the bathroom would make us all late, she just started holding her BM's and thus the decent into encopresis.

What kind of docs have you seen? Have you seen a pediatric GI? Did they do any tests? Does anyone in your family have IBD?

I wouldn't try what we did without a doctor supervising. I just offered it as something you could ask about and research further. I would be really surprised if a ped GI hadn't thought of it though. That is who helped us.
 
L

LauraJ

Was lurking, and saw lots of people talking about certain foods causing diahrea and or vomiting for their kids. People have also engines popping blood and mucus, one thing to bring up qith doctors in FPIES , it's relatively rare, our allergist is on e of the few doctors here in Canada that understands it. Our youngest started with profuse mucousy yellow diahrea, vomiting mucus , not growing , screaming in pain. Basically someone eats something, instead of the typical allergic reactions people are used to, it causes colitis type reactions.
I know people are looking for if their kids have crohns, but thought this may help someone out there who is looking for answers.(typing on phone so excuse horrific mistakes!)
 
M

Michellejk

At my wits end. My daughter is 16 years old. She had her appendix out in July at that time they also noticed an ovarian cyst that was a little large. She had additional stomach pain in August and doc wanted us to go to ER for CT scan. They did an ultrasound of the cyst instead. Everything was fine. Daughter was exhausted and had extreme fatigue and started having muscle and joint pain. Blood work from pediatrician indicated that she had previously had Epstein Barr 3 months prior. Still no relief, took her to a Rheumatologist - she had previously been to a rheumatologist for previous positive ANA test fatigue and raynauds syndrome. Mentioned that she was still having abdominal pain. Rheumatologist recommended going to see gastroenterologist. By now it was February. Gastro doc does a colonoscopy and endoscopy. Some inflammation in colon but thinks it is something acute rather than chronic have to wait for biopsy. At follow up visit states that based on the biopsy they think it is colitis maybe IBD but can't diagnose at this time. Put my daughter on Lialda and omeprazole. The pains at this time my daughter describes is burning sensation in upper abdominal area and stabbing pains in lower abdomen, low grade fevers daily, headaches, lower back, neck and knee pain. She has missed a lot of school. Lialda not helping at all, put her on prednisone, still no relief. Took her to psychiatrist, now she is on antidepressant. Blood work comes back with slightly elevated C reactive protein, slightly elevated platelets, slightly elevated liver SGPT. Her vitamin d is 21.
Lowering her prednisone from 20 to 15 to 10. Still having joint and abdominal pain enough to wake her up at night. She does not have diarrhea, no weight loss. She is mostly constipated. We are going for another colonscopy and endoscopy next week. I asked doctor about capsule camera but was told that is only for suspected bleeding. I am watching my child go from a vibrant teenager to an old woman and it is killing me not to be able to fix her. She is exhausted ever single day and is asleep by 7pm every night. Any suggestions?? If the colonscopy and endoscopy come back normal where do we go from here?
 
Clash

Clash

I would ask for imaging as well. An MRE (magnetic resonance enterography) as it is a great tool for visualizing the small bowel which an endoscopy nor a colonoscopy can get to. Also a fecal calprotectin stool test can determine if she has inflammation in her bowels though it doesn't exclusively determine CD or IBD.

As far as joint pain that is a common extra intestinal manifestation (EIM) of IBD. There are some forms that run concurrently with active flares of the IBD and others that run independently. My son has juvenile spondyloarthropathy(JSpA) with his CD as well as another joint EIM of CD. I would keep pushing with both the rheumatologist and the GI. Also, those with IBD shouldn't take NSAIDs as it can wreak havoc on their stomach/bowels so I would keep that in mind when dealing with the rheumatologist and joint pain.
 
GirlwiththeCurl

GirlwiththeCurl

I don't know how long Epstein Barr virus might affect liver enzyme levels, but if repeat bloodwork shows continuing elevated liver levels you might ask for a referral to a hepatologist.

My daughter has indeterminate colitis (almost certainly ulcerative colitis, but biopsies were inconclusive) as a secondary condition to a couple of autoimmune liver diseases. :/
 
M

Michellejk

As an update I just called and asked to get the results from the blood work my daughter had taken for the Prometheus labs. It states Pattern Consistent with IBD and has a check box next to Ulcerative Colitis also has IfA Perinuclear Pattern Detected and DNAse Senstivity shows Sensitive and STATE 3 states variant detected - Homozygous.

I am assuming this means my daughter has Ulcerative Colitis. Ticks me off that the doctor's office received these results on the 15th, saw them on the 20th and they stated the results had not come back yet. She is scheduled for colonoscopy and endoscopy on Tuesday.
 
D

DanceMom

My daughter's Prometheus test indicated she had Crohn's. We don't believe that she does (although she could develop it in the future). That test ended up confusing us instead of giving us answers.
 
M

Michellejk

So the test that the doctor insisted on. Cost me 700 out of pocket is not accurate?? My daughter is miserable, we need answers after 7 months we are both tired and frustrated.
 
my little penguin

my little penguin

Moderator
Staff member
Colonscopy /endoscopy
Pill cam
And
Mre
Plus fecal caloprotectin are the best at giving a complete picture

Took ds 8 months to get a dx at age 7
But once we did the colonoscopy he was dx

Good luck
 
M

Michellejk

Update: My daughter had the colonoscopy and endoscopy yesterday. Doctor stated that her colon looked perfect. Some slight redness in stomach area but no ulcers, now we wait for the biopsy results next week. My daughter was upset that nothing was found, doctor was perplexed as to why we would both want her colon to come back anything other than normal. After 7 months of testing and finding inconclusive results it would be nice to have a diagnosis. Just something that can be treated, just to know!!! Not sure where to go from here if the biopsy's are normal what do we do? She has abdominal pain, headaches, low grade fevers, extreme fatigue, back, neck and knee pain daily. I just want my happy vibrant daughter back!!
 
my little penguin

my little penguin

Moderator
Staff member
Has she seen a rheumotolgist ?
Juvenile spondyloarthritis can cause sub clinical gi symptoms ( not detectable on a Scope )
Also all the other things you are talking about
For my kiddo scopes always look pristine sometimes biopsies match and sometimes not
We also found dietary changes ( formula only ) help a lot in his case - no one knows exactly why and treating his JSpA
 
M

Michellejk

She has seen a rheumatologist that passed her along to the Gastro doc. However, I may make another appointment to follow-up with Rheumatoid doctor. Want to see if she will test her for Lyme disease? I am now grasping at straws. Doctor told us her blood work that she took prior to the procedures came back great. But when I read it there are a lot of high and lows - granted they were all just a little high or little low, but my thought is that a healthy 16 year old should have all normal readings?
Low - alkaline phosphatase, s 44 High - alt (spgt) 33
HIgh - WBC 11.8
Low - mchc 31.1
High Lymphs (Absolute ) 5.2
For once her c-reactive protein was normal 3.3
 
P

Pixiebo

Hi I am new to this sight,My son recently turned 16.About 18 mts ago he told me he had a lot of blood in his stools,he said it was going on a while and wad to imbaressed to say.Anyway I took him to our local g.p and was later sent to hospital, Where bloods ext were done, There conclusion was thst it could b an internal hemoride. ...After a 6 wk call back to hospital I was told that he had a hemoride and to give him a HIGH FIBRE diet, so I did. ..The symptoms proceeded and recently about 6 weeks or so my son developed an ingrown hair in lower back he was in a lot of pain,while we were in docs I brought up again about blood in stools ext.He had to go to hospital where we met a fantastic doc..Who we explain what was going on,She said that all his symptoms s sounded like he has imflamettory bowel diease. .my son gave stool sample and today we were told that the results of it was most cerently IBD,His levels were 3000 where normal is 50.He is being referred to a gasto doc,SLL I Have Been Really Told IS That He Has symptoms of chronz, so iv to waite now until we get app,I would like to know has anyone been in same situation. .at wits end....
 
pdx

pdx

Pixiebo: So sorry that your son has been through such a rough time lately. Waiting on a diagnosis is frustrating . In order to be diagnosed with IBD, the gastro doctor will probably do an endoscopy and colonoscopy; those will let you know if he has IBD. Keep an eye on your son while you wait for the appointment with the GI doctor, and take him in to your GP if you feel like he's getting sicker. We had to do that with our daughter. She got very ill while we were waiting 6 weeks for our GI consult, and she ended up admitted to the hospital by her GP. That led to scopes just a few days later.
 
M

Michellejk

Another update. After my daughter had her colonoscopy and EGD she was miserable and missed the rest of the week of school. Took her to an urgent care, they changed her heartburn med from Omeprazole to Dexilant. Went tonight to get her results, biopsies normal. Told it might be IBS. My daughter lost it. Told them that she felt better when she first came to them, and the meds they have given her, Lialda and prednisone have made her feel worse. Her symptoms have gotten worse, she has constant abdominal pain upper a burning sensation and lower stabbing pains, her lower back hurts to the touch, neck pain, knee pain, elbow pain, constant migraines and low grade fevers. NP stated that her symptoms sounded like crohns but test have been negative except for the Prometheus test. Told her to get off of all meds, tapering off the prednisone and off Lialda for a minimum of two weeks then get an MRE. She is thinking that maybe the medications are masking the disease. Just a few moments ago my daughter came to me in tears, she was having stabbing pains just below her sternum and couldn't breath. Intense pain is gone, but area is still sore to the touch. Was going to take her to Emergency but she is feels that it is useless. It is so hard to have a child going through this much pain and feeling helpless.
 
my little penguin

my little penguin

Moderator
Staff member
She was scopes while on steriods ????
Really ?
Steriods would fix everything so you won't see anything wrong
You need at least 7-9 weeks off steriods to get an accurate picture .

Wow !
Just wow !
Can you get a second opinion somewhere like a big university kids hospital ???
 
CarolinAlaska

CarolinAlaska

Holding It Together
I'm sorry your kids are suffering so. Keep knocking and doing your own research. I think the docs say IBS because they think it is nicer, but it's not if it doesn't give answers or fix the problem. IBS is more of a symptom in my opinion and a title for a doc to use who doesn't want to figure it out. My pediatrician calls it "I Be Stupid" and it titles the doc more than the patient! Tell your daughter to hang in there. PPIs do nothing to help my daughter's pain either. Time for another opinion. Knock on every door until it gets figured out.
 
CarolinAlaska

CarolinAlaska

Holding It Together
Pixiebo said:
Hi I am new to this sight,My son recently turned 16.About 18 mts ago he told me he had a lot of blood in his stools,he said it was going on a while and wad to imbaressed to say.Anyway I took him to our local g.p and was later sent to hospital, Where bloods ext were done, There conclusion was thst it could b an internal hemoride. ...After a 6 wk call back to hospital I was told that he had a hemoride and to give him a HIGH FIBRE diet, so I did. ..The symptoms proceeded and recently about 6 weeks or so my son developed an ingrown hair in lower back he was in a lot of pain,while we were in docs I brought up again about blood in stools ext.He had to go to hospital where we met a fantastic doc..Who we explain what was going on,She said that all his symptoms s sounded like he has imflamettory bowel diease. .my son gave stool sample and today we were told that the results of it was most cerently IBD,His levels were 3000 where normal is 50.He is being referred to a gasto doc,SLL I Have Been Really Told IS That He Has symptoms of chronz, so iv to waite now until we get app,I would like to know has anyone been in same situation. .at wits end....
Click to expand...

Lots of us have been in similar situation. Try not to worry. It takes finding abnormal tests to get diagnosed and ultimately to find the treatment that will help.
 
C

CazL35

Hi
My oldest (11) is going in tomorrow for endoscopy and colonoscopy under GA following months of hospital and GP visits. He has had awful stomach pain but quite high up, feels too sick to eat most days, when we were seen in hospital they said he looked too well to have anything seriously wrong and gave him medication for indigestion. After Christmas he developed masses of mouth ulcers that have never really cleared up, occasionally he will have a few days when he is clear but then they come back. He was admitted to hospital in February, he had elevated calprotectin levels (400+) and his CPR, WBC etc were all high, he was being sick and in lots of pain to the point that the A+E doc gave him morphine. This time they said because he had slightly red tonsils that was what was causing the abnormal bloods even though his throat didn't even hurt. More recently he has had diarrhea most days, an episode of bright red bleeding and also some very dark/black stools. We finally got a referral to paediatric gastroenterologist and are having the scopes as a result of that but feel as though it has been an up hill battle to get anyone to take it seriously. From reading other stories it sounds as though that is the norm?
 
Pilgrim

Pilgrim

Yeah, pretty normal. I can't count the times we were told, "She looks great!" On the road to diagnosis.
The scopes will tell the story.
 
my little penguin

my little penguin

Moderator
Staff member
Yep same here
Ds was vomiting constantly
Had rectal prolapse at age 7
Stopped eating mostly due to abdominal pain
Ped just said we needed to accept he was "just a skinny kid"
Thankfully we didn't need a referral to Gi
And Gi knew something was wrong but didn't think crohns
Due to normal blood and no diarrhea
 
C

CazL35

Well we had the colonoscopy and endoscopy yesterday and they said everything looked good but have to wait for results of the biopsies before they rule anything out as still has ulcers, pain, diarrhea, weight loss etc
I guess it reassuring that there doesn't seen to be anything major but don't know what to think now
 
A

awilliams

I hope you all can help. My 5 year old little girl started having stomach pains a few months ago after a hospitalization with influenza A. She was born with a dairy allergy that through LDA is starting to outgrow. She has been complaining of tummy pain and two weeks ago was sent home from daycare due to a painful bout. I took her to the pediatrician since I was don't watching her in pain. Upon arrival she had a low grade fever of 100.3. Over the next 6 days she struggled with intermittent pains (more so when coughing, crying, eating). I took her to ER where they ran blood, x-rays, urine and a ct. Everything came back normal except for ever so slightly elevated AST of 41 (37 being high on values). We have since received a referral for a ped gasto dr. I was able to look back to her labs in Feb when she had Flu A and her AST was 39 then. So all in all we are dealing with intermittent abdominal pain (always points to belly button), low grade fevers (runs in the 99 range when she is having bouts), stool that goes from normal to soft/greasy looking, and rising AST levels.

I am not sure what is going on with her, but it hurts me to only be able to watch her in pain.

Any ideas???
 
CarolinAlaska

CarolinAlaska

Holding It Together
awilliams said:
I hope you all can help. My 5 year old little girl started having stomach pains a few months ago after a hospitalization with influenza A. She was born with a dairy allergy that through LDA is starting to outgrow. She has been complaining of tummy pain and two weeks ago was sent home from daycare due to a painful bout. I took her to the pediatrician since I was don't watching her in pain. Upon arrival she had a low grade fever of 100.3. Over the next 6 days she struggled with intermittent pains (more so when coughing, crying, eating). I took her to ER where they ran blood, x-rays, urine and a ct. Everything came back normal except for ever so slightly elevated AST of 41 (37 being high on values). We have since received a referral for a ped gasto dr. I was able to look back to her labs in Feb when she had Flu A and her AST was 39 then. So all in all we are dealing with intermittent abdominal pain (always points to belly button), low grade fevers (runs in the 99 range when she is having bouts), stool that goes from normal to soft/greasy looking, and rising AST levels.

I am not sure what is going on with her, but it hurts me to only be able to watch her in pain.

Any ideas???
Click to expand...
I would request stool studies for c.diff. My daughter contracted it by being in the hospital, not by being on antibiotics, which is the usual risk factor people look for. Your daughter was in the hospital so it makes me think of that. The GI can do other stool studies while he/she is at it.
 
M

Michellejk

Update - so my daughter has been off Prednisone and Lialda for approximately 1 month. Have scheduled her MRE for the 25th. Currently her stomach is hurting more, last two days she was vomiting, also increased bowel movements. Today she has diarrhea. Hopefully she can hang in there until the test on the 25th - at least she is already out of school. Next year is her senior year, sure hope we can get a diagnosis and hopefully some type of treatment before then.
 
M

Michellejk

My daughter was scheduled to have her MRE this past Saturday but they cancelled as they did not receive the prior authorization in time. Now scheduled for July 23! In the meantime had her tested for Lyme Disease. Although she came back negative for the test, two bands of the test were positive and now we are being referred to infectious disease? What does my daughter have?? It is anyone's guess at this time! :(
 
CarolinAlaska

CarolinAlaska

Holding It Together
Michelle, Scotty to hear about the delay of the test. Doesn't it make you crazy? I hope the I.D. doc can shed some light on interpreting the Lyme's test.
 
M

Michellejk

While at the Infectious Disease doc, noticed that my daughter has thrush which is unusual for a healthly 16 year old. Waiting for the lab work done by the infectious disease doc. She doesn't believe my daughter has an infectious disease causing her symptoms but is testing her for HIV, strep, cat scratch fever, Hep a, b and C. Being told that maybe depression is causing my daughters pain - however I already have her seeing a psychiatrist and she is on an antidepressant which doesn't seem to work. The MRE was normal per the Pediatric Gastro, they have now diagnosed her with IBS. They asked how my daughter was and I stated, the same, still has 24/7 abdominal pain (upper and lower), back pain, joint pain, headaches and low grade fevers daily. Per the office, there is nothing more they can do, so... good luck. Follow up in 6 to 8 weeks.

I am so frustrated. I just want my daughter to be healthy again. Not sure where to go from here.
 
my little penguin

my little penguin

Moderator
Staff member
Most of the things you list are not GI
Have you looked into spondyloarthritis ????
Rheumatologist ??
Also have you looked into pediatruc pain amplification programs ??
They work on pain without meds and since your Dd ( like my son ) have a lot of things going on pain wise once you get the pain down then you can see what really is left .

Tried formula only diet for a few weeks ?? Does. It help ??
Seen Neuro for the headaches ??
 
Maya142

Maya142

Moderator
Staff member
A rheumatologist and an immunologist are very good ideas.

I agree with MLP - it could be juvenile spondyloarthritis. Low grade fever and joint pain are common with it. Does she have any swelling of any of her joints? Redness? Pain that gets better with movement and worse with rest? Morning stiffness?

It generally starts in the lower limb joints (knees, ankles) but hip and lower back involvement is also common.

Kids with JSpA can also have gut issues.

A pain amplification program is a great idea too. My daughter has pain amplification. In her case, after years of uncontrolled inflammation in her joints, her nerves got "used to" sending pain signals and continued to send them even after the inflammation got better. So she is in much more pain than she should be. It essentially just means that the nerves become extra sensitive to pain for whatever reason. It is VERY real pain and needs to be treated.

Pain amplification programs focus on desensitizing the nerves so they stop sending those pain signals. Some kids come in with horrible migraines, others with diffuse joint pain and others with abdominal pain. The kids who need the programs are not functional because the pain is so debilitating.

They use intense physical therapy, occupational therapy, cognitive behavioral therapy etc. so the child's nerves get desensitized and so they learn to cope with the residual pain. They don't promise that the kiddo will be pain free after the program, just that they will be more functional and usually, over time, the pain decreases.

Many of the big children's hospitals have these programs. Some are inpatient, others are day programs and others are outpatient. My daughter did a 3 week inpatient program.

Hang in there. There are still options.
 
L

Lucia22

Hi, my daughter has persistent chronic stomach pain which has become severe recently. Her fecal Calprotectin level is over 600. However, all her blood tests are normal. Ferritin is low normal. She has fatigue and heel pain but has always had chronic constipation, never loose stools. We have a long wait for tests on the NHS. Doctor has suggested IBD. Anti spasmodics don't help, nor do regular painkillers. Any advice would be much appreciated. Thank you.
 
Maya142

Maya142

Moderator
Staff member
Is she having scopes any time soon? It does sound very much like IBD. MANY kids on here have constipation instead of the typical Crohn's diarrhea. Mine started out like that too! Fatigue is very common, especially since she has a low Ferritin (have they given her iron supplements?). Joint pain is also common, including heel pain. If it persists, seeing a rheumatologist might help.

Has she tried using a heating pad? Unfortunately, the things that will work best for IBD pain are IBD treatment (steroids etc.). You could try a liquid diet -- Ensure or Boost if they are available -- while you are waiting.
 
pdx

pdx

I'm sorry that you have to wait so long for testing. As Maya mentioned above, scopes are what is really needed for an IBD diagnosis. After my daughter's fecal calprotectin came back high, the soonest we could be scheduled to see a GI doctor was in 6 weeks. My daughter was very sick at that point, and we ended up taking her to urgent care just a few days after getting the calprotectin results. The urgent care doctor admitted her directly to the hospital, and scopes happened within a few days once she was inpatient. So if your daughter's health continues to decline, think about taking her in either to her primary care doctor or to the emergency department. Sometimes it's OK to wait, but if she does have IBD, sometimes things can go downhill quickly.

I hope you figure out what's going on soon--it's really hard while you're waiting for a diagnosis.
 
N

notaparanoidmum

I'm so glad I found this page 2yrs ago my oldest daughter started showing blood wen she went the toilet but already being diagnosed with ibs they said she was constipated and more then likely tore herself knowing colitis is part of my familys medical history they told me to remove wheat, gluten & rye from her diet to see if it made any difference but it never, so for 2yrs straight ive been put off going drs then. These last few wks thou the amount of blood was to much to ignore & she was crying in pain so we went straight back drs requesting more checks her blood test came bk & her blood work was all over show we was admitted straight to hospital. They found a blockage in her bowel & said the diarohea was an overflow. They re checked her bloods & discovered she was anaemic underweight & developing late in pubety, mouth ulcers weak bones & pains in her joints, flat nails, psoriasis. They have ran all sorts of tests & scans since coeliac, Meckel diverticulum, ulcerated colitis, liver all come back negative but her faecal calprotectin test readings have come back high readings so there is definately, were waiting for the camera test now but due to the blockage in her bowel we have to wait. They told me at 12 she is quite young for crohns so finding this page & kids do get it makes me feel like we are closer to a diagnosis. I just want them to say its this & this is how we deal with it, and that I'm not a paranoid parent after all
 
L

Lucia22

Maya142 said:
Is she having scopes any time soon? It does sound very much like IBD. MANY kids on here have constipation instead of the typical Crohn's diarrhea. Mine started out like that too! Fatigue is very common, especially since she has a low Ferritin (have they given her iron supplements?). Joint pain is also common, including heel pain. If it persists, seeing a rheumatologist might help.

Has she tried using a heating pad? Unfortunately, the things that will work best for IBD pain are IBD treatment (steroids etc.). You could try a liquid diet -- Ensure or Boost if they are available -- while you are waiting.
Click to expand...
Thank you for your quick replies. That's really interesting about the constipation. My daughter also has nausea all the time and mouth sores. She has been diagnosed with CFS/ME. Other symptoms include tachycardia and palpitations. We saw an incredibly stupid gastroenterologist who suggested counselling! We have seen three rheumatologists and two podiatrists but no one knows why she has such bad heel pain. A scan showed no inflammation. The cardiologist doesn't know why she gets palpitations. It's all a mystery to every doctor we see. Mast cell syndrome has been mentioned and we are trying Sodium Cromoglycate. Antispasmodics and painkillers don't work. The doctor says her Ferritin, which is 10, is just borderline and she doesn't need a supplement.
The pain is really bad when she eats. She is permanently attached to her hot water bottle. The new gastro doc has agreed to speed up her tests. I am really worried about the GA. Also is it traumatic for kids having a colonoscopy? Is it painful afterwards? My son had a lot of pain after just an endoscopy.
 
Maya142

Maya142

Moderator
Staff member
Not usually. Most kids think the prep is the worst part of the colonoscopy. The actual scope itself is just a nap. My daughter had general anesthesia with her scopes too. She was absolutely completely asleep during the scope and didn't feel anything. They even put in the IV after she was asleep!

They pump in air during the scopes, so your kiddo might have some pain after it, but it is never too bad for my daughter. Something like Gas-x or whatever the equivalent is in the UK, might help.

Heel pain is often associated with Spondyloarthritis, which can be associated with IBD. Typically, a rheumatologist would treat Spondyloarthritis. Both my daughters have it. Really any joint can be involved, but hip pain, heel pain, knee pain and SI joint/lower back pain are the most common.

What kind of scan did she have for her heels? Did the podiatrist give her orthotics? Custom orthotics really helped my girls. You can also try Voltaren gel -- it's an NSAID but since it's topical it does not affect the gut as much. You should check with your GI first though.

Her Ferritin seems a bit low to me -- maybe not under the lower limit, but low all the same. Is she taking a multivitamin with iron? If they don't want her on iron supplements, that might help. A low Ferritin could definitely cause fatigue.

Hang in there -- hopefully you will have more answers after the scopes are done!
 
L

Lucia22

pdx said:
I'm sorry that you have to wait so long for testing. As Maya mentioned above, scopes are what is really needed for an IBD diagnosis. After my daughter's fecal calprotectin came back high, the soonest we could be scheduled to see a GI doctor was in 6 weeks. My daughter was very sick at that point, and we ended up taking her to urgent care just a few days after getting the calprotectin results. The urgent care doctor admitted her directly to the hospital, and scopes happened within a few days once she was inpatient. So if your daughter's health continues to decline, think about taking her in either to her primary care doctor or to the emergency department. Sometimes it's OK to wait, but if she does have IBD, sometimes things can go downhill quickly.

I hope you figure out what's going on soon--it's really hard while you're waiting for a diagnosis.
Click to expand...
Thank you for your kind advice. It's so good being able to talk to parents who know what it's really like. I asked the gastroenterologist if my daughter could be admitted to hospital but he said it wouldn't speed up the process. He did agree to expedite her endoscopy and colonoscopy though. So I am waiting to hear.
How is your daughter now? I am very nervous about the tests and the general anaesthetic.
 
L

Lucia22

Maya142 said:
Not usually. Most kids think the prep is the worst part of the colonoscopy. The actual scope itself is just a nap. My daughter had general anesthesia with her scopes too. She was absolutely completely asleep during the scope and didn't feel anything. They even put in the IV after she was asleep!

They pump in air during the scopes, so your kiddo might have some pain after it, but it is never too bad for my daughter. Something like Gas-x or whatever the equivalent is in the UK, might help.

Heel pain is often associated with Spondyloarthritis, which can be associated with IBD. Typically, a rheumatologist would treat Spondyloarthritis. Both my daughters have it. Really any joint can be involved, but hip pain, heel pain, knee pain and SI joint/lower back pain are the most common.

What kind of scan did she have for her heels? Did the podiatrist give her orthotics? Custom orthotics really helped my girls. You can also try Voltaren gel -- it's an NSAID but since it's topical it does not affect the gut as much. You should check with your GI first though.

Her Ferritin seems a bit low to me -- maybe not under the lower limit, but low all the same. Is she taking a multivitamin with iron? If they don't want her on iron supplements, that might help. A low Ferritin could definitely cause fatigue.

Hang in there -- hopefully you will have more answers after the scopes are done!
Click to expand...
Thanks. That's good to know. My daughter only had an ultrasound scan for her heels, which didn't show any problems. Yet she is in pain as soon as she walks. We have tried various orthotics and physio therapy strengthening exercises but they are all just useless. I will try the gel thank you. The doctors just seem to think she should put up with the pain. Did your kids have inflammation showing on scans? The rheumatologist said it must be a mechanical problem, as nothing showed up. However the podiatrist said there is no mechanical problem!
Her Ferritin seems too low to me too. She eats plenty of meat. It seems she's just not absorbing the iron properly. Iron supplements give her more pain.
I went through the same situation with my son and the docs could never work out what was wrong with him either.
 
Maya142

Maya142

Moderator
Staff member
Hmm...honestly, my girls have obvious arthritis in other joints (plenty of inflammation and even bone damage in their hips and SI joints). Heel problems are so strongly associated with spondyloarthritis, that we have never imaged their heels, just treated them.

Depending on who's reading the ultrasound, it could have been that the inflammation was missed. An MRI is a more accurate scan -- particularly an MRI with contrast.

Heel pain is typically enthesitis -- inflammation where a tendon/ligament inserts into the bone. It is absolutely typical of Spondyloarthritis, and especially in kids, juvenile spondyloarthritis often starts with heel or knee or ankle pain. If it's enthesitis, you would not see swelling usually, but the inflammation is very real and very painful.

Most kids would be given NSAIDs at first. Since she has gut problems, that might be hard. That's why Voltaren gel might be a better option.

The next steps (if you have an official diagnosis of spondyloarthritis) are Sulfasalazine or Methotrexate (which are immunomodulators), or eventually a biologic like Remicade or Humira (which are also used to treat IBD).

Spondylitis.org has a lot of good info.

In kids, juvenile spondyloarthritis is also sometimes called "enthesitis related arthritis," so that's another term to look up if you want more information.

Diagnosis is based on a clinical exam, bloodwork and often MRIs or x-rays.

My girls like to soak their feet in a tub of water when their heels really hurt. It can help a lot.

Another link for more info: http://www.aboutkidshealth.ca/en/he...uvenile-enthesitis-related-arthritis-era.aspx
 
pdx

pdx

Lucia22 said:
Thank you for your kind advice. It's so good being able to talk to parents who know what it's really like. I asked the gastroenterologist if my daughter could be admitted to hospital but he said it wouldn't speed up the process. He did agree to expedite her endoscopy and colonoscopy though. So I am waiting to hear.
How is your daughter now? I am very nervous about the tests and the general anaesthetic.
Click to expand...
My daughter is doing very well now. She's symptom-free and doing some major catching up on growth now that she's absorbing her food again. How is your daughter's growth for the past few years?

Also, your daughter will most likely not have general anesthetic for any of the testing; it's usually just a deep sedation for scopes.
 
Maya142

Maya142

Moderator
Staff member
Also, your daughter will most likely not have general anesthetic for any of the testing; it's usually just a deep sedation for scopes.
Click to expand...
It depends on the hospital -- our Children's Hospital uses general anesthesia for scopes. They have only just started using deep sedation and only for older kids. I have NO idea why -- this is one of the best hospitals in the US.

Either way, she will be ok. My daughter has had both - sedation and general anesthesia, and both times she was very asleep, and woke up saying that it was a great nap ;).
 
L

Lucia22

Such useful advice everyone, thanks.
Pdx - I am so pleased that your daughter is doing well now. It's good to hear that kids improve. My daughter's growth has actually been very good. She has grown lots over the past year. Previously, her heel pain seemed to tie in with growth spurts but now the pain is there as soon as she walks. She has to use a wheelchair at times.
Sedation sounds better than a g.a.

Maya - that is very reassuring. I suppose I've been putting off the test over the last year, trying various exclusion diets. I just always worry more because I am a bereaved mum.

My little Penguin- that is a very comprehensive list, thanks. Do you have a child with mast cell syndrome? We are doing the low Fod map diet atm but wonder if we should try low histamine etc next. Have you tried the low anime, histamine diets?I know the Paleo diet can be very effective but it is so restrictive.
 
my little penguin

my little penguin

Moderator
Staff member
Ds is being tested for mast cell disorder this week (24 hour urine test ).
When we first looked at MCAS so new a few years ago our dics thought we thought he had mastocystosis
He has tried fodmap it did nothing
He does best only mostly formula diet per his Gi
It tends to reset his system
So he is on amino acid based formula neocate Jr while we trial in one food at a time .
He is extremely allergic to everything
Foods pollens drugs cold animals etc...
Has flushing and random hives as well
So we wait for the test and test results

Here is a group that covers MCAS as well as allergy stuff
http://community.kidswithfoodallergies.org/topic/mast-cell-activation-syndrome-support-circle

Requires login but it's free
 
M

Michellejk

Thank you all for your advice and kind words. My daughter has had 24/7 stomach pain for over a year, chronic fatigue, back pain, neck pain, headaches, low grade fevers, etc. We have seen Rheumatology, Pediatric Gastro, Infectious Disease, Psychiatrist, general practitioner, now GYN currently all test are showing negative. The Prometheus test indicated consistent with IBD specifically UC but the second colonoscopy and endoscopy were normal and the MRE was also normal. Rheumatologist has ran tests for specific Autoimmune disorders and all are negative. The general practitioner ran her vitamin D levels which were low and immunoglobin A which was low, her ALT is always slightly elevated, Lyme disease was negative but had two positive bands which the Infectious disease doctor dismissed as not an indicator of anything. She just had an ultrasound last week to look for endometriosis. We will receive the results tomorrow. My daughter is a Senior in high school this year and has opted to take all courses online in order to not have issues with her attendance. My 16 year old has become a tired, depressed 17 year old with chronic pain. The next referral we have is to see a Neurologist.
 
L

Lucia22

My daughter has finally had the endoscopy and colonoscopy. No inflammation was found. The doctor thinks the fecal Calprotectin was a false positive and that it is just IBS with constipation. It will be a few weeks before the biopsy results come back. That would all be very reassuring if my daughter wasn't in pain day and night, unable to go out or enjoy the school holidays. If it was IBS then you would expect IBS meds, mebeverine etc to work but they don't have any effect all. The mast cell syndrome meds also don't work. Where do we go from here?

Michellejk - our daughters seem to have many symptoms in common. We have seen several rheumatologists, a gastroenterologist and immumologist. All her symptoms are a mystery to each doctor.
 
my little penguin

my little penguin

Moderator
Staff member
MCAS meds can take months to build up
What was she put on ?
Fwiw Ds first colonscopy looked ok
We were told food intolerance
But biopsies showed crohns
 
Maya142

Maya142

Moderator
Staff member
Lucia22 - has your daughter had an MRE or a pillcam? Sometimes IBD can hide in the small bowel, where scopes cannot reach. There are definitely a few kids here diagnosed with some sort of small bowel bowel imaging.

A false positive with Fecal Calprotectin is quite rare. Have they talked about repeating the test in a few weeks? If it was a false positive, it would be normal then.
 
L

Lucia22

my little penguin said:
MCAS meds can take months to build up
What was she put on ?
Fwiw Ds first colonscopy looked ok
We were told food intolerance
But biopsies showed crohns
Click to expand...
She's been on Sodium Cromoglycate for about 2 months. The rheumatologist said to try it at a low dose for 2 weeks and if it helped, then go up to 200 mg 3 times a day. It didn't help but we felt it was worth trying. We were never told it could take months to build up!
We've also been told food intolerance. We've tried every exclusion diet over the past 5 years. Now trying Fodmaps. Nothing helps.
My daughter is actually hoping that something will show in the biopsy, so she can have some treatment, even if it is Crohns. I think that shows how much pain she is in, which makes me feel sad. Previously a doctor has tried to make out its all in her head but the medics always seem to say that when they don't have an answer.
That's very interesting about your son's first colonoscopy.
 
L

Lucia22

Maya142 said:
Lucia22 - has your daughter had an MRE or a pillcam? Sometimes IBD can hide in the small bowel, where scopes cannot reach. There are definitely a few kids here diagnosed with some sort of small bowel bowel imaging.

A false positive with Fecal Calprotectin is quite rare. Have they talked about repeating the test in a few weeks? If it was a false positive, it would be normal then.
Click to expand...
She's only had a colonoscopy and endoscopy so far. I will ask about an MRI and pill cam.
No, the doc didn't mention repeating the fecal calprotectin. It does seem very strange, especially as she had a high level of over 600.
Thank you for your advice.
 
Maya142

Maya142

Moderator
Staff member
600 is high! My kiddo who has IBD has never had one that high! I would ask them to repeat it if they say it's a false positive.

My daughter's first set of scopes also did not show a whole lot -- small ulcers and some redness, that's it. But biopsies showed us that it was definitely Crohn's.

Has your daughter seen a pain management doctor for the pain? Or tried a TENS unit?

Hang in there!
 
N

notaparanoidmum

notaparanoidmum said:
I'm so glad I found this page 2yrs ago my oldest daughter started showing blood wen she went the toilet but already being diagnosed with ibs they said she was constipated and more then likely tore herself knowing colitis is part of my familys medical history they told me to remove wheat, gluten & rye from her diet to see if it made any difference but it never, so for 2yrs straight ive been put off going drs then. These last few wks thou the amount of blood was to much to ignore & she was crying in pain so we went straight back drs requesting more checks her blood test came bk & her blood work was all over show we was admitted straight to hospital. They found a blockage in her bowel & said the diarohea was an overflow. They re checked her bloods & discovered she was anaemic underweight & developing late in pubety, mouth ulcers weak bones & pains in her joints, flat nails, psoriasis. They have ran all sorts of tests & scans since coeliac, Meckel diverticulum, ulcerated colitis, liver all come back negative but her faecal calprotectin test readings have come back high readings so there is definately, were waiting for the camera test now but due to the blockage in her bowel we have to wait. They told me at 12 she is quite young for crohns so finding this page & kids do get it makes me feel like we are closer to a diagnosis. I just want them to say its this & this is how we deal with it, and that I'm not a paranoid parent after all
Click to expand...
so we are finally having the colonoscopy, endoscopy on tue 20/9/16 & wil get answers
 
N

notaparanoidmum

notaparanoidmum said:
I'm so glad I found this page 2yrs ago my oldest daughter started showing blood wen she went the toilet but already being diagnosed with ibs they said she was constipated and more then likely tore herself knowing colitis is part of my familys medical history they told me to remove wheat, gluten & rye from her diet to see if it made any difference but it never, so for 2yrs straight ive been put off going drs then. These last few wks thou the amount of blood was to much to ignore & she was crying in pain so we went straight back drs requesting more checks her blood test came bk & her blood work was all over show we was admitted straight to hospital. They found a blockage in her bowel & said the diarohea was an overflow. They re checked her bloods & discovered she was anaemic underweight & developing late in pubety, mouth ulcers weak bones & pains in her joints, flat nails, psoriasis. They have ran all sorts of tests & scans since coeliac, Meckel diverticulum, ulcerated colitis, liver all come back negative but her faecal calprotectin test readings have come back high readings so there is definately, were waiting for the camera test now but due to the blockage in her bowel we have to wait. They told me at 12 she is quite young for crohns so finding this page & kids do get it makes me feel like we are closer to a diagnosis. I just want them to say its this & this is how we deal with it, and that I'm not a paranoid parent after all
Click to expand...
no longer undiagnosed been confirmed 2day as crohns in her stomach, large & small bowel so av started tube feeding her for the time being anybody elses child had this treatment please
 
Maya142

Maya142

Moderator
Staff member
Lots of kids have here have had feeding tubes, including mine. Do you have any specific questions? Most kids do exclusive enteral nutrition with a feeding tube (only formula, no food) while others are allowed some food.

My kiddo had an NG tube. She learned how to place it herself and would insert it at night and remove it in the morning (so no one at school had to know). She got her feeds overnight. She was allowed to eat, so she ate during the day.

Some kids choose to keep the NG tube in all the time and don't want to insert it every night.

The first night was rough - she was miserable and her nose and throat were sore. We used a tiny, infant tube (though she was 16) - the size was 6Fr. Within a couple days, she was used to it and it was a breeze. She was admitted to the hospital to start tube feeding because she was so malnourished but sometimes it's done in an outpatient appointment.

Good luck!
 
Farmwife

Farmwife

My girl had a feeding tube surgical place in her abdomen.
It's called an AMT Mini One Button.
It's been a life saver!
First she started with a ng tube but her disease is mainly in her upper give area.
We knew this was going to be a long haul so onto the button.
My girl is 7 now but placed at 4.
 
N

notaparanoidmum

we have to be admitted tomorrow to start the polymeric diet she isn't allowed to eat anything it is for malnourishment but they have told us the tube is there till we no longer need it in her nose straight to her stomach as she is active crohns at the minute
 
my little penguin

my little penguin

Moderator
Staff member
If it's polymeric formula
Then she might be able to drink it orally and not need a tube
Has she tried that brand before ??
I would ask
Ds did een but he did his with semi elemental ( tastes worse than polymeric but better than elemental) peptamen Jr
He drank it all orally no other food
This past summer he did 8-9 weeks of een with elemental formula - neocate Jr and drank it all orally
He still drinks some orally now
The Gi was surprised he didn't need a tube
But definitely worth a try
We pinched his nose
Used a straw to by pass taste buds and made it really cold with ice

Tagging cat-a-tonic she is still doing een with vionex ( elemental ) orally
 
Cat-a-Tonic

Cat-a-Tonic

Super Moderator
As MLP said, I was orally drinking 6 Vivonex per day when I was doing EEN for a couple weeks. Then I started decreasing the Vivonex as I added foods (low-FODMAP) back in. I'm down to just 1 Vivonex per day now, and I actually like the taste. When I first tried it, I thought it tasted like wood chips. :p But now I like it and find I even have cravings for it! It's an acquired taste, but I acquired it quickly. It's not bad at all once you're used to the taste.
 
N

notaparanoidmum

it has to be tube fed & its for 6wks initially could be longer depending on her in the last 8wks she has lost 5.4kg & is now just under 4st which is low for a 12yr old
 
pdx

pdx

notaparanoidmum said:
it has to be tube fed & its for 6wks initially could be longer depending on her in the last 8wks she has lost 5.4kg & is now just under 4st which is low for a 12yr old
Click to expand...
My daughter had really good results with tube feeding. Like your daughter, she was 12 when she was diagnosed, and she was also severely underweight. She used the tube for 90% of her calories for about 8 weeks, and then just used it overnight for supplementary nutrition for another couple of months. She gained 20 pounds during those months of tube feeding, and she gained another 25 pounds and 4 inches of height during the next year after Remicade started working for her.

The tube feeding also helped resolve her abdominal pain and nausea. Hope your daughter has good results and starts feeling better really soon.
 
Maya142

Maya142

Moderator
Staff member
My daughter also did well on tube feeding. It might take a little while for her to feel better, but it should help. My kiddo was very underweight too and gained 25 lbs with a feeding tube!

Hope she is doing ok with the tube so far.

Good luck!
 
M

Michellejk

Hi everyone! No changes here, my daughter still has 24/7 pain and still no idea why. They did find that she now has a complex ovarian cyst. They are doing a laparoscopy sometime soon to check for endometriosis. However, current Gyno does not think she has that, based on her symptoms, she thinks she has IBD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! OMG!! Almost lost it. Told her we have been there and done that. Then she stated that she seems to have inflammation and maybe it is IBS??? I am so... over doctors! Also suggested chiropractor (which we have already done) and for my daughter to take Tumeric, Cinnamon and go on the Paleo diet. Anyway, we are still getting the laparoscopy done and see what happens. Any suggestions?? We have now had, 2 colonoscopy's (one with inflammation one without), 2 endoscopy's (one with gastritis one without), Prometheus test which indicated her results were consistent with IBD specifically UC, Negative MRE, tried Lialda (no help), Prednisone (little effect) - Gastro decided it was IBS and told me there is nothing to they can do for that. Psychiatrist has had my daughter on 3 antidepressants and since none but the first one (which made my daughter too tired) worked, told us there was nothing more she can do. Infectious Disease, misdiagnosed my daughter as having thrush (she did not), tested her for HIV, cat scratch fever etc (waste of time), Rheumatologist all tests other than ANA come back negative. Gave her a script of lyrica for the back pain, it did not help. General practitioner labs show low Vitamin D, low immunoglobulin A, elevated C-reactive protein, elevated ALT. Have yet to see a neurologist.

Luccia22 - I agree! Let me know if you ever get a diagnosis and I will keep you posted as well.
 
my little penguin

my little penguin

Moderator
Staff member
Tagging missleopard83
They thought ibd but found out it was endometriosis

Cysts and inflammation can cause havoc on the gi tract as well since they sit side by side
I know Dusty DD was Dx on the operating table so hopefully the surgery will help your kiddo get answers
 
N

Needinganswers

I'm looking for answers and really hoping someone can help. My daughter is 7 and her abdominal pain started when she was 4. She has pretty much had daily pain in the same exact spot since it started almost 4 years ago. I've taken her to multiple doctors and had many tests done. The only explanation they have came up with is functional abdominal pain or maybe abdominal migraines. It started right around the time she had a seizure (her 1st) on her 4th birthday. From the time the pain started she has always pointed to the same exact spot when I ask where it hurts. It's in the high right quadrant. She has had upper and lower scopes done and they both came back normal. Most of her labs have came back normal. Once her bilirubin came back high but when tested again it was ok. Her daily complaints are sever abdominal pain and nausea. She often gets nauseous to the point she can't eat. However, she doesn't lose any weight. She also gets frequent headaches that she is on a migraine medication for. She has regular bowel movements, usually 2 times a day. It's not diarrhea but it is more soft than firm. It breaks my heart seeing her in so much pain and not being able to help her! Does anyone have any advise or thoughts? I'm sick of the doctors acting like it's nothing when I KNOW there is something wrong. I feel like she just can't be a kid. :(
 
Maya142

Maya142

Moderator
Staff member
Has she had any motility testing? Does the pain occur after she eats? I would look at Gastroparesis -- delayed gastric emptying. That causes both abdominal pain and nausea but it's usually after eating. Kids are often too nauseous to eat and sometimes lose weight.

What are they doing for the functional pain? Have they tried any medications or seeing a pain management doctor? There are also pediatric pain programs for chronic pain, which can really help.
 
N

Needinganswers

Thank you for your response! She has had upper and lower scopes done and they both came back normal. She has also had a HIDA scan,x-rays,ultrasounds and a lot of lab. Her GI never gave her anything for the pain. He basically said when they do all the tests and everything comes back normal it's just considered functional abdominal pain. He said maybe she will outgrow it. I'm just not happy or satisfied with that answer. I feel there is something going on and something that can be done to help her. She basically wakes up with her stomach hurting and goes to bed with it hurting. It hurts before she eats and after. It just hurts all the time. I've kept a diary of when it hurts and when and what she eats but there doesn't seem to be any triggers or insight to what is causing it. Being nauseous is why she won't eat when she doesn't. She just says she feels like she can't. She is also very gassy if that has anything to do with any ideas you may have. She has tried taking probiotics and gas x and some other things. Nothing has offered any relief.
 
Maya142

Maya142

Moderator
Staff member
Sometimes something triggers pain -- such as a regular kid virus -- and starts a pain response that the body remembers.

In my daughter's case (she has juvenile arthritis), it was inflammation that was the trigger. But once we got the inflammation under control, the pain remained, because her nerves were so used to the inflammation, that they kept sending pain signals, long after we had it under control (for the most part, anyway).

This is called "amplified pain" or "visceral hyperalgesia" or "central sensitization" -- the body is sending pain signals when there's no real cause for them. It doesn't mean the pain is not real -- it is very real and needs to be treated. It just means it needs to be treated differently.

Pediatric pain programs use many therapies to "re-train" the nerves. They involve PT/OT, cognitive behavioral therapy, biofeedback etc. There are children's hospitals all over the country that have them - Boston Children's is one, Cleveland Clinic, CHOP.

I'm not saying this is what your daughter has, just that it might be something to look into, especially if you cannot find a cause.

They do use medication when necessary - typically medication for nerve pain, like Elavil or Gabapentin or Lyrica. It's usually an anti-convulsant or anti-depressant which in smaller doses, work for nerve pain.

The other thing I mentioned - motility issues - require special testing for a diagnosis, which scopes or ultrasounds or labs do not replace. For example, for Gastroparesis you would need a gastric emptying test to figure out whether she has it. For other kinds of motility issues, there are different tests.
 
D

DanceMom

I would ask to try a medication that treats IBS. If it is functional abdominal pain you still have options. I would also do allergy testing to check for food allergies. You could also do an elimination diet to check for any intolerances. Good luck!
 
H

Heather11

Hi Lucia22 and Michellejk -
I found this page about 6 months ago and have been “lurking” in the background and watching your posts with interest. My daughter has similar symptoms to both of your daughters and has been ill for 4.5 years. She became ill at the age of 11 and has now just turned 16. She has missed most of middle school and high school and she will take the high school equivalency exam when we can get her to feel well enough. We have been able to track the onset of a majority of her symptoms to a meningitis-like/flu-like illness that occurred in 6th grade where most of the school got sick. While it appears that the rest of the kids got better, my daughter and 2 other girls did not. All three girls have struggled for the past 4.5 years with the other 2 girls making steady progress toward recovery and with each passing year, they can do more and more. However, my daughter appears to get better and then she will crash. We are currently in the middle of an episode that began about two months ago that has her at times lying in bed rolled up in a ball in pain. My daughter’s main symptoms are: 24/7 abdominal pain (pain levels of 2 to 8 out of 10; current levels are 5-8), extreme debilitating fatigue (fatigue levels of 2 to 8 out of 10; current levels are 6-7), periodic episodes of blood and mucus in the stool, constipation, acid reflux, some nausea, canker sores, low iron, low ferritin, periodic burning sore throat, periodic cough, excessive cavities in her teeth (15 cavities in 2015 and 11 cavities in 2016), significant neck and back pain 2-3 times a week, poor sleep, poor appetite, and depression. My daughter’s abdominal pain is so bad that she won’t let most doctors probe her abdomen and she is a kid that has always had an extremely high tolerance for pain. She has had 4 colonoscopy/endoscopies, all of which have shown areas of redness and “slight ulcerations” in her colon with the exception of the last colonoscopy/endoscopy which showed a small area of Crohn’s. Her Fecal Calprotectin levels have ranged from 73 to 337 and we are awaiting for the results of yet another one which will determine if she will have another colonoscopy/endoscopy (her 5th). She recently had a saliva cortisol test which showed that her cortisol levels were very low. The jury is still out on that one… One thing that has worked the most for us is managing her sleep and her energy level – i.e. significantly reducing her activities, taking sleep aids, etc. This approach got her pain and fatigue levels down to 1-2 this summer for the first time since she became sick – she actually rode a bike for the first time in years! But then she “crashed” and we haven’t gotten anything to work. There appears to be a direct relationship between sleep quality/quantity and her wellness/energy level the next day. We have also had some help with Budesonide EC for pain but that seems to have stopped working now. There have been multiple procedures, medications, doctors, and diagnoses, but whatever treatment we try, it just doesn’t seem to address the root of the problem. My daughter currently sees a pediatrician, a gastroenterologist, a chiropractor, a naturopath, and a therapist, all of which have added value, but we are still looking for the main cause as to why she can’t seem to get better. My daughter and I are also “sick of doctors” and have walked the “psychological pain” path more than once…. The last time psychological pain was mentioned, I became a bit “spirited” which may have sparked some interest/movement in some of her doctors. My daughter and I are open to the possibility of a psychological aspect/cause but after many evaluations nothing has been identified and therefore there is no treatment in place for that. I wanted to reach out to you both to let you know that you are not alone. While it has waxed and waned at times, I have hope that my daughter will get better and will go on to live a long and fulfilling life. We just take one day at a time….
 
CarolinAlaska

CarolinAlaska

Holding It Together
Needinganswers said:
I'm looking for answers and really hoping someone can help. My daughter is 7 and her abdominal pain started when she was 4. She has pretty much had daily pain in the same exact spot since it started almost 4 years ago. I've taken her to multiple doctors and had many tests done. The only explanation they have came up with is functional abdominal pain or maybe abdominal migraines. It started right around the time she had a seizure (her 1st) on her 4th birthday. From the time the pain started she has always pointed to the same exact spot when I ask where it hurts. It's in the high right quadrant. She has had upper and lower scopes done and they both came back normal. Most of her labs have came back normal. Once her bilirubin came back high but when tested again it was ok. Her daily complaints are sever abdominal pain and nausea. She often gets nauseous to the point she can't eat. However, she doesn't lose any weight. She also gets frequent headaches that she is on a migraine medication for. She has regular bowel movements, usually 2 times a day. It's not diarrhea but it is more soft than firm. It breaks my heart seeing her in so much pain and not being able to help her! Does anyone have any advise or thoughts? I'm sick of the doctors acting like it's nothing when I KNOW there is something wrong. I feel like she just can't be a kid. :(
Click to expand...
I'm sorry to hear of your daughter's ongoing pain. For some reason, I wonder about a vascular issue with your daughter. Perhaps she has a malformation that didn't grow well with her and it gets kinked off causing infarction or oxygen deprivation.
 
M

Michellejk

An update. My daughter had her laparoscopy done yesterday. The GYN found the following, she had adhesions from her abdomen to her bowel (from the appendectomy), additional adhesions near her belly button from previous surgery. They removed the cyst from her left ovary, but had to also remove part of her fallopian tube because of the way the cyst was wrapped around it. The doctor believes that she has endometriosis but we have to wait for the pathology to be sure. My daughter is currently in pain from the surgery, but my fingers are crossed that she will start feeling better soon.
 
M

Michellejk

Another update. My daughter is 1 week out from laparoscopy and her pain has started to worsen. Went to doctor today. No signs of endometriosis or cancer. Cyst was dermoid. Doctor said she looked around and noticed her colon was distended which is common in IBD and IBS. Recommended for us to see another gastro doc for 2nd opinion. She feels as though she has done everything she can as a gyn. Guess we will wait until after the holidays and see if pain is any better and if not we will continue this frustrating heart wrenching journey.
 
Catherine

Catherine

Moderator
Michelle I suggest you get the ball moving with GI now.

I have done a little research on adhesions and their causes as my adhesions of unknown origin have come back.

Adhesions of unknown origin with bowel involvement suggest Crohn's is a possibility.
 
CarolinAlaska

CarolinAlaska

Holding It Together
Michellejk said:
Another update. My daughter is 1 week out from laparoscopy and her pain has started to worsen. Went to doctor today. No signs of endometriosis or cancer. Cyst was dermoid. Doctor said she looked around and noticed her colon was distended which is common in IBD and IBS. Recommended for us to see another gastro doc for 2nd opinion. She feels as though she has done everything she can as a gyn. Guess we will wait until after the holidays and see if pain is any better and if not we will continue this frustrating heart wrenching journey.
Click to expand...
Michelle,

I'm sorry your daughter is suffering. Is ahe on her menses this week? That might make her belly pain temporarily worse.
 
M

Michellejk

Catherine,

We will be going to see another gastroenterologist but will wait until she is healed from her laparoscopy first. Poor kid is so tired and frustrated with doctors. This one suggested removing dairy, gluten etc which was one of the first things we did over a year ago without any results. Then suggested the Paleo diet. We have done ALL of this, my daughter has had this pain since June of 2015. She has been tested for gluten multiple times, no matter how many times we tell them that she is negative, everyone seems to have to check for themselves. I am so... over doctors!!!!
 
P

pooksmom

So I am confused and all the big words the Dr. uses to help reassure me dont help. It might be nothing but let me put a camera up his but and see?
'' has he been abused?" they ask ? I AM SURE 100 PERCENT HE HAS NOT. weird question for me to hear from a doctor? Doesnt everyone think so though , who thinks there kid has been abused. I mean I am not a simple person.. so I rethink his life and no...unless at school ,thats crazy right.. what exactly does an anal fissure in the 7 oclock mean . I am not even there yet. what about that time he had hernia surgery and I was worried they could have stole a kidney , they could have, How would I know?Shouldnt we be allowed to watch surgery on our kids? Anyway moving on..the primary doctor asked me about abuse... while side stepping all indications he needed to see a GI
It is with mixed reaction that I report luckily /unluckily that they did want a stool sample (the 2nd one ) to run "more test" so he at that exact sample time, pooped out what looked like two aborted fetuses pardon my bluntness this is all new and shocking.
So I call the doc and say hey I got you that stool sample but it looks like he pooped out a liver (this is where they tell me he was negitive for blood in his first one ) Great I say . except ...I can tell you this one wont be. Oh they are not testing for blood in this sample. I feel awful for the poor techs. Anyway they send my son to the ER , i take the sample cause someone needs to see it ,right,?
The ER doc gives me my first real clue something is WRONG. like really. autoimmune , he expeled some of his intestinal lining. So here I am waiting for tuesdays colonoscopy. Knowing nothing about test they have run already except his red blood cells are small so they are looking into a genectic form of amenia but want more test next week.And the first test showed no blood in his stool. <eye roll> He is 11.
 
Farmwife

Farmwife

I so sorry to hear this.
When if his follow up appointment?
Do you know any pacifics of what they found during the scopes?
What did his doc have to say about medicine?
 
pdx

pdx

pooksmom said:
So ,mY 11 YR baby boy has a DX of Crohn's. What now?
Click to expand...
Sorry to hear about your son's diagnosis. His doctor should schedule a followup visit with you to talk about treatment options. You'll find a lot of good info about all the options here on this forum, and feel free to ask questions here too about them too.
 
P

pooksmom

Farmwife said:
I so sorry to hear this.
When if his follow up appointment?
Do you know any pacifics of what they found during the scopes?
What did his doc have to say about medicine?
Click to expand...
The scope shows 'blisters' in the bottom end of the colon and on the lower part of the ileum His esophagus show so swelling . The calprotectin test had numbers over a 1000, she said. He had an MRI yesterday result will be back monday.

In the mean time he was in pain and not being treated with anything. I took him to his primary and they put him on Pentesa They could not do anything t they said, for his anal fissue except anusol ,which did nothing. I got him the spray that they give woman who have been cut or tore doing childbirth durablast and that really helped him with that part . So far I am very disappointed in the care he has gotten and I know that the only reason he has been dxed this fast is because the ER doctor I took him to, just about had him admitted to an out of network hospital. They followed his intrustions of getting him into a GI within 24 hours. So he backed down. After that however they are back to playing games . his GI wants to phone consult his treatment plan to me on monday. This is our first real conversation about what is going on so I want a face to face.

He is anemic ,with very high CP levels.. He has lost weight 10 pound since 11/25 16. 4 of those from 12/14/ tp 12/27.

Definitely less pain since the pentesa but now he is going 2 or 3 days without pooping and then pooping a massive amount. Which triggers the pain all over again. I decided to give him stool softeners least night to ward off that issue . However, I worry I might do harm my making a wrong move or meal or food choice. and I do not have a lot of faith in the doctors of this disorder. They do not know what causes this . Here it was it does but it is different for everyone... does not seem to be a lot of science issue concerning the doctors words and what they say ,imo. Early in the game for me so maybe that is a rush judgment.
 
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