Confused my son was Diagnosed with Crohn's and No Crohn's

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

LostInNY

LostInNY

Joined
Jul 31, 2016
Messages
30
Hi I'm new to this forum and hope I post this correctly. My son was diagnosed with Crohn's in 2011 and immediately was put on humira. He was scoped in 2014 and again I was told that it was Crohn's, but after that I felt something was not accurate. My son had a colonoscopy and endoscopy last week with a new GI and different hospital from where he was diagnosed. No finding of Crohn's and then had MRE no evidence of Crohn's. I stopped humira last July 2015 when the Prometheus blood report came back inconsistent of IBD. The new dr suggested that we wait a year to scope. During the year he lost over 60lbs and on the MRE shows enlarged liver and enlarged right kidney and endoscopy found submucosal lesion in stomach. He needs further testing. I'm lost and baffled at how he was originally diagnosed put on deadly medicine for a condition he does not have. Anyone else ever had this happen? And I'm scared about his weight loss enlarged liver and right kidney and lesion. Please help.
 
Last edited:
The first two scopes what were the diagnostic criteria? Did they find granulomas? There are, of course, a number of endoscopic and histological markers as well as medical history etc. that signify Crohn's disease so they could have diagnosed without the presence of granulomas.

The link below lists some differential diagnosis of CD

http://emedicine.medscape.com/article/172940-differential#1

Hope you find answers soon.
 
Did you have the original biopsy slides from 2011 re read at the new hospital ?
And Mre /colonscopy from 2011 re read ?
Did he lose weight while on humira from 2011-2015 ?
Did the Mre then show that his liver and kidneys were enlarged ?
Prometheus test really is not to be used to determine if someone has or doesn't have Ibd
It was designed for cases were the patient has indeterminate Ibd to help figure out if it's UC or crohns -most doctors don't put much stock in the test .
How is his fecal caloprotectin test ?
Inflammatory blood markers?
There are other Gi disorders /immunodefeciency disorders that can mimic crohns
What age was he dx ?
Bechets is one
Tagging Dancemom Her dd was thought to have crohns but didn't

Ds was also dx in 2011 at age 7.

We have a parents forum which may help

Here

http://www.crohnsforum.com/forumdisplay.php?f=49


If your child was under 6 at dx
Then very early onset Ibd could apply which has a completely different set of rules and immunodefeciency places a large role

http://www.sciencedirect.com/science/article/pii/S0016508514009196

http://www.naspghan.org/files/documents/pdfs/annual-meeting/2012/Muise - FINAL - NASPGHAN 2012.pdf


Tagging
Clash
Mehita
Crohnsinct
Tesscom
maya142
Farmwife
Dancemom
Pilgrim
 
How old is your son? What did his scopes show when he was diagnosed in 2011?

It sounds like you need another opinion. I wonder if it's possible that Humira was just keeping your son in remission and that is why his scopes were clear? There are several parents here whose kids had completely clean (normal) scopes after being on Humira/Remicade for several years.

It might be worth exploring a second opinion at one of the big pediatric IBD centers -- both Boston Children's and the Children's Hospital of Philadelphia are close to you.

The Prometheus test is not 100% accurate. There are plenty of people with Crohn's whose tests are negative and also people who do not have Crohn's who have positive tests.
 
In 2011, my son was being treated for ankylosing spondylitis, he is hla-b27 positive. The pediatric rheumatologist referred that he be seen for suspected Crohn's Disease. The first GI that treated him performed barium X-ray study, numerous blood test and everything was normal. My son was on enbrel for 2 years for spondylitis and gained weight to the point he was 40lbs overweight. The pediatric GI said it was necessary for him to have an endoscopy and colonoscopy, as soon as he was finished with the test she told me he had Crohn's in the small ileum and ulcers on his esophagus. At the time I didn't know what I do now and I hope that this never happens to another person again. Immediately she started him on Humira, during those 4 years he was still sick, but I was learning more about the disease and he wasn't having the symptoms associated with either UC or Crohn's. Sorry if this is confusing, the original GI that diagnosed him left the practice and he was switched to another GI in the same practice. After blood test, MRE in 2014 he was scoped again but there wasn't any inflammation found and she told me that was because the Humira cleared it and he was to continue on Humira. I requested all the pathology reports and saw on 2011 report Small bowel, terminal ileum, biopsy: ileal mucous a with patchy moderate chronic active iletis with focal moderate architectural cryptitis and focal surface erosion, features suggestive of IBD (Crohn's Iletis); no discrete granulomata identified. Stomach biopsy showed mild congestion with minimal chronic inflammation. Besides his esophagus everything was normal. In 2014 small bowel, terminal ileum, biopsy: illeal mucosa with preserved villous architecture; within normal limits. His esophagus had inflammation from direct toxic injury which was caused by INH therapy, he contracted latent TB while on Humira. The slides were sent to another hospital with a new pediatric GI and he told me that if he had it it was extremely minimal and no treatment with Humira was warranted. Now because he was diagnosed with Ankylosing Spondylitis the new GI wanted me to take my son to someone else before stopping Humira. I waited for the Prometheus test to come back was told it was inconsistent with IBD but he needs an endoscopy and colonoscopy. I requested the pathology report on the slides and the report "we agree with the outside diagnosis." My son is now 17 and is no longer treated by pediatric doctors. The new rheumatologist said that it's impossible for him to have Ankylosing Spondylitis because he is hyper mobile. The new GI says no Crohn's Disease. I asked if there was any scars anything at all and he said if he didn't know the history he would have a completely normal result, but because he couldn't reach everything with scope he arranged the MRE I got the results no inflammation, no Crohn's but enlarged liver and right kidney, as well as lesion in stomach. My son has to have an ultrasound endoscopy this week. The GI has not said much except things I can't face at the moment. I'm very scared. I don't trust anybody anymore and the pediatric rheumatologist had shares with Humira and paid 100k a year by them and found out a bunch of other things. I'm lost. I hope that I somehow explained this all its just a lot. Thank you for any help or anything at all. I don't know what to do my son is 5'10 weighs 110lbs weight loss occurred after stopping Humira but now he can't gain and has constant diarrhea. I don't know what to do anymore.
 
The new rheumatologist said that it's impossible for him to have Ankylosing Spondylitis because he is hyper mobile.
Click to expand...

You can actually have AS and be hypermobile. My daughter is -- she has radiographic sacroiliitis (damage on x-rays), HLA B27+ and an extensive family history of AS. Her spine has lost a lot of mobility but certain joints are hypermobile.

How was he diagnosed with AS? Did he have x-rays or MRIs? Where is he seeing a rheumatologist? If he is 17, he could still be seeing pediatric doctors.

People with AS sometimes have subclinical IBD -- IBD that shows up on biopsies and scopes but they do not have symptoms. I suspect that is the case for your son. It sounds like he does have some symptoms though -- significant weight loss is one.

The biopsies seem like Crohn's based on everything I have read. It does seem like the Crohn's was under control on Humira and that is why his scopes were clear.

My daughter was also put on Enbrel for her AS and that was when her Crohn's was diagnosed. MANY kids with juvenile AS turn out to have subclinical Crohn's (something like 60%) and a certain percentage go on to develop symptoms and it becomes more like "typical Crohn's disease."

We were told that either way, the Crohn's is treated the same -- with medications like Humira, Remicade or Cimzia. You could also try something like Methotrexate if you are not comfortable with biologics.

How are his joints doing since you have stopped Humira?

I would still get a second opinion - I would see both a pediatric GI and rheumatologist if you can. Juvenile Spondyloarthropathy or Juvenile Ankylosing Spondylitis manifest differently than adult Ankylosing Spondylitis which is why if his diagnosis is being questioned, I'd have him see another pediatric doctor.

In Juvenile AS, the SI joints are often involved, but involvement of lower limb joints -- the knees, ankles, heels -- is very common. Other peripheral joints like the wrists or elbows can also be involved. Hip involvement is also very common.
 
LostInNY said:
In 2011, my son was being treated for ankylosing spondylitis, he is hla-b27 positive. The pediatric rheumatologist referred that he be seen for suspected Crohn's Disease. The first GI that treated him performed barium X-ray study, numerous blood test and everything was normal. My son was on enbrel for 2 years for spondylitis and gained weight to the point he was 40lbs overweight. The pediatric GI said it was necessary for him to have an endoscopy and colonoscopy, as soon as he was finished with the test she told me he had Crohn's in the small ileum and ulcers on his esophagus. At the time I didn't know what I do now and I hope that this never happens to another person again. Immediately she started him on Humira, during those 4 years he was still sick, but I was learning more about the disease and he wasn't having the symptoms associated with either UC or Crohn's. Sorry if this is confusing, the original GI that diagnosed him left the practice and he was switched to another GI in the same practice. After blood test, MRE in 2014 he was scoped again but there wasn't any inflammation found and she told me that was because the Humira cleared it and he was to continue on Humira. I requested all the pathology reports and saw on 2011 report Small bowel, terminal ileum, biopsy: ileal mucous a with patchy moderate chronic active iletis with focal moderate architectural cryptitis and focal surface erosion, features suggestive of IBD (Crohn's Iletis); no discrete granulomata identified. Stomach biopsy showed mild congestion with minimal chronic inflammation. Besides his esophagus everything was normal. In 2014 small bowel, terminal ileum, biopsy: illeal mucosa with preserved villous architecture; within normal limits. His esophagus had inflammation from direct toxic injury which was caused by INH therapy, he contracted latent TB while on Humira. The slides were sent to another hospital with a new pediatric GI and he told me that if he had it it was extremely minimal and no treatment with Humira was warranted. Now because he was diagnosed with Ankylosing Spondylitis the new GI wanted me to take my son to someone else before stopping Humira. I waited for the Prometheus test to come back was told it was inconsistent with IBD but he needs an endoscopy and colonoscopy. I requested the pathology report on the slides and the report "we agree with the outside diagnosis." My son is now 17 and is no longer treated by pediatric doctors. The new rheumatologist said that it's impossible for him to have Ankylosing Spondylitis because he is hyper mobile. The new GI says no Crohn's Disease. I asked if there was any scars anything at all and he said if he didn't know the history he would have a completely normal result, but because he couldn't reach everything with scope he arranged the MRE I got the results no inflammation, no Crohn's but enlarged liver and right kidney, as well as lesion in stomach. My son has to have an ultrasound endoscopy this week. The GI has not said much except things I can't face at the moment. I'm very scared. I don't trust anybody anymore and the pediatric rheumatologist had shares with Humira and paid 100k a year by them and found out a bunch of other things. I'm lost. I hope that I somehow explained this all its just a lot. Thank you for any help or anything at all. I don't know what to do my son is 5'10 weighs 110lbs weight loss occurred after stopping Humira but now he can't gain and has constant diarrhea. I don't know what to do anymore.
Click to expand...

I am sorry for what yoiu all have been through.
 
So granulomas are only found in 30% of crohns cases even though most pathologists won't check the crohns " box" unless they see them .
AS can have sub clinical Gi findings and symptoms .
Honestly at this point a third opinion with rheumotologist and gi would be something I would try .
I have gotten Two second opinions at seperate hospitals for Ds and may be going for another one soon.
Ds is hypermobile but we were told AS is something they are very concerned about in his future hla b27 postive as well
Was his AS dx by imaging ?
It's not typically damage that disappears .
Enbrel has been linked with inducing crohns ( or starting it in JIA kids )
Did the imaging no longer show damage now or was his mobility good so no new inages were taken ?

Did he have diarrhea while on humira or just since coming off ?
Does it stop if he stops eating and goes npo ?
Have they admitted him ?
Have you tried EEN with elemental to see if that stops the diarrhea ?

Ds had diarrhea for 6 weeks -not crohns but it stopped everytime he went npo
But came back with clears or peptamen Jr
Once he started neocate Jr things calmed down
After four months of basically no food things are improving with food
Still investigating why
EEN could help him gain weight at least until you figure out which end is up
It works the same as steriods for Ibd but also fixes other Gi disorders such as egids
 
Maya142 said:
You can actually have AS and be hypermobile. My daughter is -- she has radiographic sacroiliitis (damage on x-rays), HLA B27+ and an extensive family history of AS. Her spine has lost a lot of mobility but certain joints are hypermobile.

How was he diagnosed with AS? Did he have x-rays or MRIs? Where is he seeing a rheumatologist? If he is 17, he could still be seeing pediatric doctors.

People with AS sometimes have subclinical IBD -- IBD that shows up on biopsies and scopes but they do not have symptoms. I suspect that is the case for your son. It sounds like he does have some symptoms though -- significant weight loss is one.

The biopsies seem like Crohn's based on everything I have read. It does seem like the Crohn's was under control on Humira and that is why his scopes were clear.

My daughter was also put on Enbrel for her AS and that was when her Crohn's was diagnosed. MANY kids with juvenile AS turn out to have subclinical Crohn's (something like 60%) and a certain percentage go on to develop symptoms and it becomes more like "typical Crohn's disease."

We were told that either way, the Crohn's is treated the same -- with medications like Humira, Remicade or Cimzia. You could also try something like Methotrexate if you are not comfortable with biologics.

How are his joints doing since you have stopped Humira?

I would still get a second opinion - I would see both a pediatric GI and rheumatologist if you can. Juvenile Spondyloarthropathy or Juvenile Ankylosing Spondylitis manifest differently than adult Ankylosing Spondylitis which is why if his diagnosis is being questioned, I'd have him see another pediatric doctor.

In Juvenile AS, the SI joints are often involved, but involvement of lower limb joints -- the knees, ankles, heels -- is very common. Other peripheral joints like the wrists or elbows can also be involved. Hip involvement is also very common.
Click to expand...
The new Rheumatologist saw prior MRI reports of his sacroilitis joints and yes there was subtle changes and edema, but it was explained that it also wasn't clear whether it would turn to Ankylosing Spondylitis and he doesn't have it because he has no fusions. I've been more comfortable with the non pediatric specialist because they don't directly push for medications. The Rheumatologist had an X-rays done and said there is nothing for my son to be treated by him or any rheumatologist at all. I'm in NYC I brought my son to a private pediatric rheumatologist that doesn't take any insurance and drained me dry for his fee. My son isn't having joint pain, occasionally back pain but he is extremely weak with lots of fatigue. I'm so confused. An ultrasound endoscopy is different than regular endoscopy I am freaked out. I won't ever go back to those medicines because of the way my son was responding while on them, he was still sick. I've looked at the research on medical marijuana and it really seems great, especially that it is an oil with no high effects.
 
If his AS was diagnosed based only on symptoms, I would push for an MRI. Inflammation and/or damage will show up on an MRI while just damage shows up on x-rays.

Both Boston Children's and CHOP have good pediatric IBD programs and good pediatric rheumatology depts.

The Hospital for Special Surgery in NYC is good too. We used to see a pediatric rheumatologist there but she has since moved. But I can give you a recommendation for an adult rheumatologist there. I also know of a good GI in NYC that treats both kids and adults at Mount Sinai.
 
The new Rheumatologist saw prior MRI reports of his sacroilitis joints and yes there was subtle changes and edema, but it was explained that it also wasn't clear whether it would turn to Ankylosing Spondylitis and he doesn't have it because he has no fusions
Click to expand...

Even if he does not have AS (and you are correct, you do need damage on x-rays to have AS), it sounds like he has juvenile spondyloarthritis (JSpA). Bone marrow edema is what I'm guessing they saw which is TYPICAL of SpA.

Incidentally, many kids start out with JSpA and progress to AS over time. Just because he does not have it now, does not mean he will not develop in the future. It takes many years to fuse. My older daughter was diagnosed at 14 and has no fusion at 22. My younger daughter was diagnosed at 12 and does have fusion in one SI joint. She has much more severe AS.

My husband also has AS. When he was diagnosed, biologics did not exist. He was put on just an NSAID. He has had 5 hip replacements, and has lumbar spine fusion and part of his neck is also fused. His SI joints are also fully fused. His ankle is also fused. He has never been on biologics.

When you compare the amount of fusion and damage he has in his joint to that of my daughters, it's quite incredible. I don't mean to sound like I am selling biologics, just that AS is a serious disease that needs to be treated. Even the juvenile version -- juvenile spondyloarthropathy -- needs to be treated so that it does not progress into AS over time.

AS is not benign. I would suggest getting a second opinion. Incidentally, you do NOT need fusion to have AS, just radiographic sacroiliitis (damage to the SI joints visible on x-ray). Both my girls now have AS.

The fatigue could be from AS or Crohn's or simply weight loss.
 
my little penguin said:
So granulomas are only found in 30% of crohns cases even though most pathologists won't check the crohns " box" unless they see them .
AS can have sub clinical Gi findings and symptoms .
Honestly at this point a third opinion with rheumotologist and gi would be something I would try .
I have gotten Two second opinions at seperate hospitals for Ds and may be going for another one soon.
Ds is hypermobile but we were told AS is something they are very concerned about in his future hla b27 postive as well
Was his AS dx by imaging ?
It's not typically damage that disappears .
Enbrel has been linked with inducing crohns ( or starting it in JIA kids )
Did the imaging no longer show damage now or was his mobility good so no new inages were taken ?

Did he have diarrhea while on humira or just since coming off ?
Does it stop if he stops eating and goes npo ?
Have they admitted him ?
Have you tried EEN with elemental to see if that stops the diarrhea ?

Ds had diarrhea for 6 weeks -not crohns but it stopped everytime he went npo
But came back with clears or peptamen Jr
Once he started neocate Jr things calmed down
After four months of basically no food things are improving with food
Still investigating why
EEN could help him gain weight at least until you figure out which end is up
It works the same as steriods for Ibd but also fixes other Gi disorders such as egids[/QUOTE

He had chronic stomach pain on Humira and occasionally had diarrhea but most of the time he was constipated. He stopped humira last July the diarrhea has started a few months ago on and off, but in the past couple of weeks he has been losing 2-5lbs a week. He is tolerating boost. He's only been hospitalized for latent TB and pneumonia back in 2014. The dr seems alarmed by the enlarged liver and right kidney plus submucosal lesion. I'm not going to further investigate AS unless he has symptoms. His whole adolescent life was destroyed by these diagnoses. He is a very smart kid who is on the high honor roll, but socially awkward and feels out of place. He is terrified of dr's.
Click to expand...
 
Maya142 said:
If his AS was diagnosed based only on symptoms, I would push for an MRI. Inflammation and/or damage will show up on an MRI while just damage shows up on x-rays.

Both Boston Children's and CHOP have good pediatric IBD programs and good pediatric rheumatology depts.

The Hospital for Special Surgery in NYC is good too. We used to see a pediatric rheumatologist there but she has since moved. But I can give you a recommendation for an adult rheumatologist there. I also know of a good GI in NYC that treats both kids and adults at Mount Sinai.
Click to expand...

I'm seeing an adult GI affiliated with Mount Sinai. As well the Rheumatologist is with HSS. Who do you recommend? I don't think I can focus on anything other than liver, kidney and lesion right now
 
my little penguin said:
So granulomas are only found in 30% of crohns cases even though most pathologists won't check the crohns " box" unless they see them .
AS can have sub clinical Gi findings and symptoms .
Honestly at this point a third opinion with rheumotologist and gi would be something I would try .
I have gotten Two second opinions at seperate hospitals for Ds and may be going for another one soon.
Ds is hypermobile but we were told AS is something they are very concerned about in his future hla b27 postive as well
Was his AS dx by imaging ?
It's not typically damage that disappears .
Enbrel has been linked with inducing crohns ( or starting it in JIA kids )
Did the imaging no longer show damage now or was his mobility good so no new inages were taken ?

Did he have diarrhea while on humira or just since coming off ?
Does it stop if he stops eating and goes npo ?
Have they admitted him ?
Have you tried EEN with elemental to see if that stops the diarrhea ?

Ds had diarrhea for 6 weeks -not crohns but it stopped everytime he went npo
But came back with clears or peptamen Jr
Once he started neocate Jr things calmed down
After four months of basically no food things are improving with food
Still investigating why
EEN could help him gain weight at least until you figure out which end is up
It works the same as steriods for Ibd but also fixes other Gi disorders such as egids
Click to expand...

I'm so sorry I replied to your questions to someone else. I am new I don't know how to respond right
 
I'm sure you are very worried. Sending hugs!! If his joints aren't bothering him, perhaps you could get the other stuff figured out and then get an opinion on his joints.

Even though he only has sporadic back pain, if there is inflammation in his joints, it could be causing damage. Damage and fusion are permanent and you really want to avoid them. My younger daughter (who is 19) and significant hip and SI joint damage.

I will message you with names of doctors.
 
Maya142 said:
I'm sure you are very worried. Sending hugs!! If his joints aren't bothering him, perhaps you could get the other stuff figured out and then get an opinion on his joints.

Even though he only has sporadic back pain, if there is inflammation in his joints, it could be causing damage. Damage and fusion are permanent and you really want to avoid them. My younger daughter (who is 19) and significant hip and SI joint damage.

I will message you with names of doctors.
Click to expand...
Thank you so much I really appreciate your help. Yes, the other things are urgent and we need to find out why it's enlarged. Thank you so much again and I am sorry for everything you have been dealing with too. It's an emotional roller coaster. I hope things are getting better.
 
Your poor kiddo. I'd encourage him to drink Boost and Ensure if he cannot eat, just so he can some good calories. Can he tolerate Boost/Ensure? Some kids need more broken down formulas -- semi-elemental, like Peptamen or even elemental, like Neocate or Elecare.

My daughter has also struggled with her weight. When she was drinking shakes (she drank Peptamen), she found they were easiest to drink if they were cold and with a straw. We also tried many different flavors to find one she liked. Your GI's office might even have samples of various kinds of shakes.

He had chronic stomach pain on Humira and occasionally had diarrhea but most of the time he was constipated. He stopped humira last July the diarrhea has started a few months ago on and off, but in the past couple of weeks he has been losing 2-5lbs a week.
Click to expand...

The diarrhea is worrisome. Did the doctor have any thoughts about what was causing the diarrhea and weight loss if not IBD? Diarrhea is a very common symptom of IBD as is weight loss. Especially considering the diarrhea started after Humira was stopped...
 
Maya142 said:
Your poor kiddo. I'd encourage him to drink Boost and Ensure if he cannot eat, just so he can some good calories. Can he tolerate Boost/Ensure? Some kids need more broken down formulas -- semi-elemental, like Peptamen or even elemental, like Neocate or Elecare.

My daughter has also struggled with her weight. When she was drinking shakes (she drank Peptamen), she found they were easiest to drink if they were cold and with a straw. We also tried many different flavors to find one she liked. Your GI's office might even have samples of various kinds of shakes.



The diarrhea is worrisome. Did the doctor have any thoughts about what was causing the diarrhea and weight loss if not IBD? Diarrhea is a very common symptom of IBD as is weight loss. Especially considering the diarrhea started after Humira was stopped...
Click to expand...
Something to do with the lesion and enlarged liver and kidney. Do you or anyone else know what causes this?
 
I'm not sure but you could try posting on the Parents Forum. Someone might have more ideas there.

Sending hugs!
 
my little penguin said:
So granulomas are only found in 30% of crohns cases even though most pathologists won't check the crohns " box" unless they see them .
AS can have sub clinical Gi findings and symptoms .
Honestly at this point a third opinion with rheumotologist and gi would be something I would try .
I have gotten Two second opinions at seperate hospitals for Ds and may be going for another one soon.
Ds is hypermobile but we were told AS is something they are very concerned about in his future hla b27 postive as well
Was his AS dx by imaging ?
It's not typically damage that disappears .
Enbrel has been linked with inducing crohns ( or starting it in JIA kids )
Did the imaging no longer show damage now or was his mobility good so no new inages were taken ?

Did he have diarrhea while on humira or just since coming off ?
Does it stop if he stops eating and goes npo ?
Have they admitted him ?
Have you tried EEN with elemental to see if that stops the diarrhea ?

Ds had diarrhea for 6 weeks -not crohns but it stopped everytime he went npo
But came back with clears or peptamen Jr
Once he started neocate Jr things calmed down
After four months of basically no food things are improving with food
Still investigating why
EEN could help him gain weight at least until you figure out which end is up
It works the same as steriods for Ibd but also fixes other Gi disorders such as egids
Click to expand...

I didn't know enbrel induced Crohn's I don't know the dr's all say different things. It's a hard thing to diagnose. Do you know anything about submucousal lesion of stomach and enlarged liver and right kidney?
 
I'm so sorry you're having these frustrations and I definitely understand your distrust for doctors. My daughter was diagnosed with Crohn's and a few months later that diagnosis was retracted. To be fair, the GI admitted she wasn't a textbook case and Crohn's was the best fit at the time. He advised us to seek a second opinion in Atlanta, and that led to a long series of events that eventually led to a proper diagnosis. We've seen 3 GIs (now consulting with a 4th), 2 Rheumatologists, 2 Immunologists, 5 Pulmonologists, and 3 Pediatricians. Each played a part in getting us where we are today. Stay on top of things, be your child's voice, and come here whenever you need support/advice. This forum has been such a blessing to me.
 
DanceMom said:
I'm so sorry you're having these frustrations and I definitely understand your distrust for doctors. My daughter was diagnosed with Crohn's and a few months later that diagnosis was retracted. To be fair, the GI admitted she wasn't a textbook case and Crohn's was the best fit at the time. He advised us to seek a second opinion in Atlanta, and that led to a long series of events that eventually led to a proper diagnosis. We've seen 3 GIs (now consulting with a 4th), 2 Rheumatologists, 2 Immunologists, 5 Pulmonologists, and 3 Pediatricians. Each played a part in getting us where we are today. Stay on top of things, be your child's voice, and come here whenever you need support/advice. This forum has been such a blessing to me.
Click to expand...
I definitely can relate with going to numerous doctors. Last week my son had an MRE and I was told his liver and kidney are enlarged. Today I brought him in for blood work and he needs to have an endoscopy ultrasound. I was told his liver is 18.9 cm and with the amount of weight lost and fatigue, I'm so sad. This is terrible. I need to be strong for him, it's hard holding back tears and I haven't told him yet. I do fully believe this is from years of biologic meds. I hope that things work out for you and your daughter. I appreciate the welcome here, everyone is helpful and kind.
 

Similar threads

P
How long on EEN before your child had solid motions again
Replies
5
Views
640
padrach3
P
K
Possible Crohn’s disease
Replies
10
Views
1K
musicalwiz
M
S
My son was diagnosed SJIA at age 12 then Crohn's at age 13
Replies
28
Views
3K
J100
J
J
Crohns mum with Crohns 14 year old son.
Replies
11
Views
2K
Delta_hippo
D
P
Our Journey So Far SCD CDED Experiences
Replies
2
Views
1K
Pam.estella
P

Latest posts

Back
Top