Hi, I have a two year old little boy who has always had diarrhea, he has never had a solid or semi solid stool in his life. He also could go up to 10-12 times daily, like we change him a few times a day because of the mess, we have ro regularly change his bedding and shower him in the night it is never ending. I questioned this alot at phn appointments and even durring hospital admissions for other things and was always bluffed off that it was because he was breastfeeding, we stopped breastfeeding at 19 months and no change. He has swollen lymphnodes on his neck for over a year and when we finally got seen by a paed for them I addressed the diarrhea and was told it was toddlers diarrhea. I asked for them to do more as there's a family history of ibd, his father had uc and last year had his bowel removed. So they ran bloods and hes anemic, sent him on his way advising me to start him on iron. We were back up 4 months later and I told them to refer him private as his paediatric kept telling me to relax it was just toddlers diarrhea. While waiting on his private appointment he had a hospital admission for stomach issues, his stomach was very distended and he was having temps so gp sent us up. They ran bloods he's still anemic but it's the only thing that ever flags, and they done a stool sample for calprotectin and an xray which showed dilated bowel loops but nobody seemed concerned. Ff a few weeks and I had to ring up to see about his calprotectin and I was told it came back at over 6000 and let the specialist know when we see him. The specialist couldn't care less about any of that information and just say across from me and said its toddlers diarrhea because he looks well!!! He eventually agreed to a scope (that he said the waiting list was huge for a won't be for a longggg time) but then changed to a rectal biopsy and a throat scope? I don't know why I was too annoyed to ask but when I receive the appointment i will be ringing up and asking! Has anyone any advice on this, I have some drs and nurses in shock that no one has taken this seriously given the strong family history, and then the top drs give is a 5 minute appointment look at him say he's fine pay me 300euro and be on your way. Just looking for advice on anyone ever been in the same situation as us
Two year old with symptoms
- Thread starter sssm8719
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Hello, I am so sorry you and your child are going through this. It would be of course better if you could somehow find more cooperative doctors...
The high calprotectin strongly suggests IBD, but the symptoms and anemia could also point to celiac disease, so you might also want to get him tested for that. https://www.beyondceliac.org/celiac-disease/children/testing/
The high calprotectin strongly suggests IBD, but the symptoms and anemia could also point to celiac disease, so you might also want to get him tested for that. https://www.beyondceliac.org/celiac-disease/children/testing/
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My son had constant diarrhoea, it was so bad he was literally developing broken skin around his bum, constant trips to doctors, constant fob off with “toddler diarrhoea”. He was perfectly average weight and height when born but dropped to 4th percentile (ie 96% of children his age were bigger than him) and wasn’t developing ie starting to talk as you would have expected.
I was paranoid about Crohn’s due to having it myself.
We tried stopping dairy on advice of GP which did nothing but made things worse as one of the few things he would eat were dairy puddings.
We then tried stopping gluten having read about it on mumsnet. Within two days no more diarrhoea, skin around bum healed, started growing again, eating,eventually started to catch up with talking etc.
I have never been so relieved and grateful in my life.
If you decide to try this then literally just stop all gluten/ look for gluten free alternatives like pasta (the bread leaves a lot to be desired to be honest) but check labels ruthlessly as they hide gluten in all sorts (some sausages, even some chocolate)
It may not be the answer but worth a try and if it is that then you will see quickly is my experience
Good luck
I was paranoid about Crohn’s due to having it myself.
We tried stopping dairy on advice of GP which did nothing but made things worse as one of the few things he would eat were dairy puddings.
We then tried stopping gluten having read about it on mumsnet. Within two days no more diarrhoea, skin around bum healed, started growing again, eating,eventually started to catch up with talking etc.
I have never been so relieved and grateful in my life.
If you decide to try this then literally just stop all gluten/ look for gluten free alternatives like pasta (the bread leaves a lot to be desired to be honest) but check labels ruthlessly as they hide gluten in all sorts (some sausages, even some chocolate)
It may not be the answer but worth a try and if it is that then you will see quickly is my experience
Good luck
He has been tested for celiac twice and both negative, I was so convinced it was a gluten allergy and I stopped all gluten in the house and no difference, I have also stopped dairy and made no difference. So I think it could be a bowel issue, I am just struggling with the lack of help or lack of wanting to help. They say because he looks fine then he's OK. Before my husband lost his bowel his drs were amazed at how well he looked and kept telling him you look fantastic but boy are you sick, so I don't buy the whole he looks fine thing. Gp refusing to redo the calprotectin test or bloods so I've been onto paeds today and they hopefully will see him next week in the day ward to get them done.
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Tagging @Pilgrim and @J100 both had very young kids dx with crohns
Extremely rare for crohns even at age 2
I get it mine “adult child” was dx at age 7 but had GI issues since birth .
The swollen lymph nodes …is not a typical sign of crohns.
Auto inflammatory disease do happen a lot in very young children
https://www.nomidalliance.org/
And here is a chart of symptoms
https://saidsupport.org/introducing-autoinflammatory-search-org/
In very little kids crohns like symptoms appear but are actually other diseases
Genetic panels can sometimes help
Sometimes not
We have been told our kiddo has crohns juvenile arthritis and sweets syndrome
But all the docs admit that is the closest they can come to describe what he has going on.
He did have 3.5 cm swollen lymph node removed on his neck which contained granulomas but never any actual infection so the specialist believe it was from one of his three diseases ….
Currently the meds work and he is doing well so we question less the label given .
has he had allergy testing ???
Eosinophilic diseases can cause a host of issues including throat /GI issues
Eosinophilic colitis comes to mind
Have they tried amino acid based (elemental formula ) only for him?
Een (exclusive enteral nutrition) means formula only no solid food but it treats a long list of diseases quickly
Including crohns,EoE, EoC etc…
No side effects like steriods
It allows the body to heal
With EoE you slowly reintroduce one food at a time while staying on formula to determine what if anything is causing it
With crohns it’s a treatment until you stop once solid food is reintroduced then the crohns comes back
https://www.cincinnatichildrens.org/health/e/eosinophilic-colitisHope you find answers soon
Extremely rare for crohns even at age 2
I get it mine “adult child” was dx at age 7 but had GI issues since birth .
The swollen lymph nodes …is not a typical sign of crohns.
Auto inflammatory disease do happen a lot in very young children
https://www.nomidalliance.org/
And here is a chart of symptoms
https://saidsupport.org/introducing-autoinflammatory-search-org/
In very little kids crohns like symptoms appear but are actually other diseases
Genetic panels can sometimes help
Sometimes not
We have been told our kiddo has crohns juvenile arthritis and sweets syndrome
But all the docs admit that is the closest they can come to describe what he has going on.
He did have 3.5 cm swollen lymph node removed on his neck which contained granulomas but never any actual infection so the specialist believe it was from one of his three diseases ….
Currently the meds work and he is doing well so we question less the label given .
has he had allergy testing ???
Eosinophilic diseases can cause a host of issues including throat /GI issues
Eosinophilic colitis comes to mind
Have they tried amino acid based (elemental formula ) only for him?
Een (exclusive enteral nutrition) means formula only no solid food but it treats a long list of diseases quickly
Including crohns,EoE, EoC etc…
No side effects like steriods
It allows the body to heal
With EoE you slowly reintroduce one food at a time while staying on formula to determine what if anything is causing it
With crohns it’s a treatment until you stop once solid food is reintroduced then the crohns comes back
https://www.cincinnatichildrens.org/health/e/eosinophilic-colitisHope you find answers soon
@my little penguin - Thank you for tagging me.
@sssm8719 - So sorry that you are going through this. The first step and the most important step would be to find a pediatric gastroenterologist who is willing to find the root cause. Not all pediatric gastros are alike and you need to find someone who is patient and is willing to answer your questions. In my son's case, luckily I had found a pediatrician who had organised an early appointment with a pediatric gastro. And colonoscopy, endoscopy was the next step for my son. It is a difficult procedure because preparation for it in a 2 year old was hard. Is there blood in your son's poop? Wish you the best in getting some answers.
@sssm8719 - So sorry that you are going through this. The first step and the most important step would be to find a pediatric gastroenterologist who is willing to find the root cause. Not all pediatric gastros are alike and you need to find someone who is patient and is willing to answer your questions. In my son's case, luckily I had found a pediatrician who had organised an early appointment with a pediatric gastro. And colonoscopy, endoscopy was the next step for my son. It is a difficult procedure because preparation for it in a 2 year old was hard. Is there blood in your son's poop? Wish you the best in getting some answers.
Hi J100, we had his calprotectin repeated last week and got results today that it's 4370 so still way too high and also there was again blood in his stool (microscopic) so his dr finally told me today he does not think my son is suffering from toddlers diarrhea and that its something else that needs investigating. I am relieved but also gutted, I so wanted them to be right and me wrong. He is going to contact the specialist again as he said going forward my son should be dealt with by the specialist. I hope this hurries along the scope testing. I feel sick thinking of what he has to go through and him only a baby, but if it helps get answers for him it's needs to be done.
Hi @sssm8719 - any update or progress in your son's case. Are the doctor's any closer to a diagnosis. Here is a link I found where the doctors were not particularly helpful. https://www.abc.net.au/news/health/...y-bowel-diseases-children-australia/103902842. Sometimes, the parents have to keep on looking for a competent specialist doctor.
Hi j100 thanks for asking. He had his scopes done on monday (it was rushed through as I pushed for another calprotectin to be done and also asked they check for blood occult and it came back positive and calprotectin of 4307) and they confirmed he has ibd but waiting on biopsy results to say if its chrons or uc, I knew deep down something wasn't right but I am absolutely gutted for him, hearts broke to think of what lies ahead, there's been alot of tears they just keep flowing. He's such a happy wee man and never been sore a day in his life so to think of him diagnosed with a horrible disease is tough. He has already been started on a med to hopefully help the diarrhea and heal the inflammation. I am hoping that it's uc rather than chrons as uc is contained just to the large bowel.
Hi @sssm8719 - I think it is very important to get the correct diagnosis and have a pediatric gastro who understands and is going to work with you. Whether it is Crohn's or UC, should be revealed soon. Process it and take your time. My son's pediatric gastro had stated that it will be a long haul. And it is true. Take a few deep breaths every day.
Yes they will contact me when they know which one it is, and we have already met the ibd nurses who were great and have all their contact details, it's just so raw right now, having it confirmed is such a kick in the face, I wish it was me and not him. But the rational part of me is glad they have finally checked so that they can help before any irreversible damage was done, the Dr said there's nothing in there that won't heal and it's mild so that is good news. Can I ask what your sons diagnosis was and what the treatment plan was
My son was diagnosed with Very early onset of Crohn's disease. I wouldn't tell you about his treatment plan for now because it is imperative that you wait for your son's diagnosis and take time to process it. Your pediatric gastro should be able to guide you. What I can tell you is that in my son's case every medication was given very carefully with a lot of tests done to check for any adverse impacts. Your son is very young and you will need him to communicate with you if he is in pain. In my son's case, the doctor had ordered a lot of tests in week1, week2, week4. If all good, then week 6, 8, 12 and so on. This was to check if the medication is having any adverse impact or not. Communicate with your son and check for cues if he is in pain or not. You know your son better than anyone else. Find a way to distinguish if he is just crying because children do cry or is he crying because of tummy or some other pain post medication. Do keep an eye out for rashes on his body and or fever. Your son's pediatric gastro will discuss this all with you. My son was sick of the infinite number of blood tests and in a child who is 2 it will not be easy but as i have said before that it is a long haul journey. Take one day at a time. Take care of yourself because you need to stay healthy both physically and mentally to be able to take care of your child.
Your son's gastro should have communicated it to you how long it will take. Two weeks seems rather long but leave it to you.
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Hi thanks for checking in! We still don't know what his official diagnosis is and it will be three weeks tomorrow from his scopes, is that normal? I have been emailing the information nurses and they said they haven't heard from drs yet which is kind of strange. My wee man is doing good, there is already a change in his stool from the meds! So that's brilliant, but he has little appetite and has a slight rash too, but again ibd nurses asked for a pic and said they don't think it's anything to worry about like an allergic reaction so I will just follow it up with his paediatric dr we see this week
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Definitely see the ped
Depending on the med it could be an issue
Sulfanazine or 5-asa can cause issues
As well as 6-mp/imuran aza etc (liver or pancreas)
Is he still on formula ?
sometimes formula only -pediasure ,kids boost etc…can be used as sole nutrition called exclusive enteral nutrition
This heals the gut as well as steriods but no side effects
Takes 6-8 weeks
Depending on the country your in
Polymeric formula is over the counter stuff
Semi elemental is prescribed by the Gi abd partially broken down -doesn’t taste as good but most little kids tolerate it well by mouth
My kiddo used peptamen jr
Then elemental (neocate jr ,elecare jr etc…) are completely broken down into amino acids so only a tiny portion of the small bowel needs to be healthy to absorb it
But according to my kid (he drank neocate jr at 12-15) it tastes like rotten frozen French fries
scope results in the us typically take 1 week
Canada a little longer
Uk I think a month
They may or may not be able to state crohn or UC
If there are non caseating granulomas present then it’s crohns
But only 30% of crohns patients have those show on biopsy
good luck
Hope he feels better
Depending on the med it could be an issue
Sulfanazine or 5-asa can cause issues
As well as 6-mp/imuran aza etc (liver or pancreas)
Is he still on formula ?
sometimes formula only -pediasure ,kids boost etc…can be used as sole nutrition called exclusive enteral nutrition
This heals the gut as well as steriods but no side effects
Takes 6-8 weeks
Depending on the country your in
Polymeric formula is over the counter stuff
Semi elemental is prescribed by the Gi abd partially broken down -doesn’t taste as good but most little kids tolerate it well by mouth
My kiddo used peptamen jr
Then elemental (neocate jr ,elecare jr etc…) are completely broken down into amino acids so only a tiny portion of the small bowel needs to be healthy to absorb it
But according to my kid (he drank neocate jr at 12-15) it tastes like rotten frozen French fries
scope results in the us typically take 1 week
Canada a little longer
Uk I think a month
They may or may not be able to state crohn or UC
If there are non caseating granulomas present then it’s crohns
But only 30% of crohns patients have those show on biopsy
good luck
Hope he feels better
He is almost three and dosnt drink formula but his med is sulfasalazine. His rash is more like raised little spots and not typical of the sulfasalazine rashes that I've looked up on Google, but I'll definitely be bringing it up at his paed appointment this week. I will also be contacting the ibd nurse again this week to see if they have his official diagnosis before he sees the Dr this week so we can tell him. Also to add we are in ireland and I was told a week or two max before we would get results. Is your child's diagnosis crohns or uc?
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My child is an adult now ( almost 21)
He was dx at age 7 but GI issues since birth
Exclusive enteral nutrition ( een ) is used with kids and adults to introduce remission
Basically formula only for 6 to 8 weeks while you wait for maintenance meds to kick in
Sulfanazine takes 30 days to work
It is effective in UC since UC only affects the top layer of the intestine
It is no longer recommended as monotherapy for Crohn’s patients
However the very early onset ibd kiddos have limited drug options
Methotrexate is used in juvenile arthritis as young as two
My kiddo has been on that plus biologics for more than a decade now
Definitely ask about een
Chop (childrens of Philadelphia) lets kids do 90/10 or 80/20
Meaning 90% formula 10% solid food
Helps with little kids
mine did een 2-3 times and then stayed on supplemental nutrition (formula plus food )
This is extremely helpful for growth on kids with crohns .
He drinks 2-3 shakes a day plus meals to keep up his weight
He stayed on his growth curve and towers over the other kids with crohns we know who were not put on extra shakes
In college he drinks carnation essentials (2-3 a day )
But has had good scopes for years now
Good luck
He was dx at age 7 but GI issues since birth
Exclusive enteral nutrition ( een ) is used with kids and adults to introduce remission
Basically formula only for 6 to 8 weeks while you wait for maintenance meds to kick in
Sulfanazine takes 30 days to work
It is effective in UC since UC only affects the top layer of the intestine
It is no longer recommended as monotherapy for Crohn’s patients
However the very early onset ibd kiddos have limited drug options
Methotrexate is used in juvenile arthritis as young as two
My kiddo has been on that plus biologics for more than a decade now
Definitely ask about een
Chop (childrens of Philadelphia) lets kids do 90/10 or 80/20
Meaning 90% formula 10% solid food
Helps with little kids
mine did een 2-3 times and then stayed on supplemental nutrition (formula plus food )
This is extremely helpful for growth on kids with crohns .
He drinks 2-3 shakes a day plus meals to keep up his weight
He stayed on his growth curve and towers over the other kids with crohns we know who were not put on extra shakes
In college he drinks carnation essentials (2-3 a day )
But has had good scopes for years now
Good luck
I think 1 month is a little too long but check with your son's doc. I am based in Australia and in my son's case, it took 2 days to get the results post colonoscopy. The pediatric gastro should have provided an update. One more thing - please go to your son's gastro immediately and urgently for the rash. My son was also prescribed sulfasalazine and he developed a rash and another problem due to which I had to take him to the emergency. The other problem, may or not have been caused by sulfasalazine. But in my son's case, once the doctor had seen the pics of the rash, he immediately put a stop to sulfasalazine. Monitor your son's fever, rash, lips, tongue, eyes. High fever, any redness in eyes, lips, tongue, rash on the body - please ensure that the doc looks at it urgently.
