Undiagnosed 5 years old boy

[AlexIta]

I am a newbie here, me and my wife are both italians but we live in UK London.
This story is about my son, he is 5 years old and started everything 2 months ago.
We decided to reintroduce milk on his diet and after 2-3 days he developed diarrhea and blood in the stool. We stopped the milk and the blood was gone, we tried again and we had the very same result.

The GP at first told us, it is a virus so it is ok. The second time we went he decided to go for the stool test, because he was a bit suspicious of the blood again. Today we just got the results and the value of the Calprotectin in stool was 1280. Tomorrow we are going to have a visit with him and then pediatrician.

We are, of course scared and I think this situation is a nightmare for parents, but we are in and we have to do all that we can. I am writing to have more info about this diseases, and I hope that people with experience can give us some info/help. I still cannot believe, my son is pretty tall for a 5 years old and the height is above the average for his age, I was not expecting this.

Can he have a normal life? can you advice us something to read or to get informed?

thank you all for any advice or just to share your experience.
Ale

 

[crohnsinct]

Hi there and sorry you are having to travel down this road. I have one daughter with Crohns and another currently under evaluation.

I have been doing exhaustive research on Fecal calprotectin levels as my undx'd daughter is asymptomatic (well sort of) for Crohns but had high fc and I have been wondering what else it could be. While a high FC is certainly suspect of Crohns it could also be from infection, parasite, and other organic issues. I have recently found that Celiac and milk protein allergies can also raise (although they don't always) fecal calprotectin.

What other testing has been done? Blood tests? Any imaging? MRE? Scopes?

Are there any other symptoms?

If it does turn out to be Crohns, once you find the treatment that works for your child they can certainly live a happy and very productive life. The beginning is the hardest but after the first year my daughter hasn't missed a day of school and has run on the track team 2 hours per day and followed that with a USA Swim team for another 2 hours. The key is diagnosis and treatment.

Good luck at your appointment and please keep us posted and come back with any questions you might have.

 

[my little penguin]

Did they mention allergic colitis ?
It can cause inflammation /bleeding which would cause the fecal cal to increase .
Milk is a common culprit
Good luck

 

[Pilgrim]

It sounds from your description that it could be, perhaps, a milk allergy. In that case, treating it wouldn't be too difficult.

I hope that you get a quick diagnosis!

 

[my little penguin]

Many babies are fussy eaters, but some are much more so than others. If your baby seems constantly irritable, has problems feeding (she has difficulty keeping food down and/or doesn’t want to eat) or has excessive gassiness, diarrhea and/or blood in his stools, he may be allergic to proteins in cow’s milk. This condition, which only affects babies, is called allergic colitis. The good news is that for the vast majority of children, it is just temporary.
In allergic colitis, the milk proteins cause a reaction within your baby’s body that irritates his colon (large intestine) and creates small ulcerations in its lining. If left untreated, it can lead to serious problems, so it’s important to diagnose and treat it early. Fortunately, once identified, allergic colitis is quite easy to treat.

From
http://www.childrenshospital.org/health-topics/conditions/allergic-colitis

 

[AlexIta]

Thank s a lot for all the messages, I really appreciate your help.

We did not do any blood test, scope or MRI yet. Today we are going to talk with the GP and he will send us to a paediatrician.

My son symptoms are mainly diarrhoea for 7-10 days after that he had cow`s milk, usually he goes to the bathroom 6-8 times a day, at the beginning the stool are pretty clear of blood but after 1 or 2 days the blood is there. He never had crap or tummy-ache and he is a good eater. He eats almost everything but sometimes he is a bit picky, normal for a child (I guess). I understood that calprotectin tells you mainly about an inflammation of the bowel. I do not know how long takes to the inflammation to go down in the bowel. However, I am sure we went for the stool test after 4-5 days of the disappearance of the blood in the stool. Another thing that it is a bit wired, is it possible that milk causes diarrhoea for such a long time?

The GP was a bit puzzled when he saw the value, my son is growing ok and eats a lot. So I was not thinking about IBD syndromes, because usually in children is associated with developmental delay, however lets see what the paediatrician will say, could be as some of you said a very very bad allergy to milk.

Thank you,
Alex

 

[my little penguin]

Fecal caloprotectin can take months to go down but can go up very quickly.
It just means there is inflammtion in the gut but not the type.
Regardless you need a referral to see a pediatric Gi specialist
Great Ormond street in London has a very good kiddie gi program -from what I have heard.
/
As far as bleeding
The gut takes 4-6 weeks to start to heal after a food has been remived that is causing a gut allergy -which is very different from true IgE mediated milk allergy
This is mixed or delayed milk allergy and only effects the gut .

You said you just introduced milk
Was there a reason he had been on milk since age 1?

Also crohns may or may not affect the weight /growth of a kiddo depends on the disease location ( large bowel disease typically does not affect growth as much) -and how long the disease has been simmering .

Good luck

 

[AlexIta]

Thank you for the invaluable info.

We took milk out because he was intolerant, remaining of some food in the stool plus a bit of mucus, we took the cows milk out and the stool where perfect then. Recently the doctor told us try to introduce milk again because now he is 5, so we could have a go. We did and all the story began.

http://www.gosh.nhs.uk/children/coming-to-hospital/, is this the hospital? We will try to get in there in some ways.

The forum is fantastic, we are getting lots of info and help.

Thank you a lot

 

[crohnsinct]

Here is one of the studies I read when looking for other reasons fecal calprotectin would be raised. It specifically addresses cows milk protein allergy.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881398/

I am impressed that your GP is aware of the FC test and administered it but it is really a GI who will be able to interpret it fully and review your son's case thoroughly and would know the other things to look for. Don't be surprised if they have you wait another couple of months and retest. It seems there is a lot of hurry up and wait with these GI issues. :boring:

I hope it is as simple as removing cows milk again!

 

[AlexIta]

Thank you, I hope he can be visited pretty soon, I just need to know what we have to face. Any news I will post here.

Thank you again, I will read this paper immediately, we will try to ask to our GP to get a place at

http://www.gosh.nhs.uk/children/coming-to-hospital/, it should be pretty good for this things.

 

[killcolitis]

Hi Ale,

I'm so sorry that you're going down this road. My husband is also from Italy and we also lived in London which is where my IBD daughter was born. She was diagnosed with UC at the age of 3. We moved to Italy and she was treated by "the best" pediatric GI in the country in Rome. I have mixed feelings about the health care in London so I will say if you are worried and you are not getting answers you should go to the A&E. We sought care in Italy partially for this reason. It is not normal to have that high of a calpro, and bleeding on and off over a period of time is not a virus (my daughter was bleeding a lot with severe diarrhea for over a month and our pediatrician kept telling us that it was viral. She was very dismissive and caused a lot of suffering, hence my advice about going forward without them if necessary). I don't know enough about allergies but it might be the culprit. But I would want blood work done next (I know it is very hard) and then possibly to move forward with scopes. I do know, after five years and a lot of research, that IBD is not uncommon amongst Italians especially when they move to colder climates. I very much hope it's not the case for your son. If you want more details about the docs in italy etc please PM me. Good luck!

 

[AlexIta]

Hi Killicolitis,

Thank you for the email.

I was pretty sure that was not a virus, my first feeling was the milk, because I is statistically impossible that only one child in a class of 25 kids have those symptoms and the others are clean.

However as soon as I got to know the calpr, i started to looking for info on internet. Me and my wife are planing to ask for blood test, MRI and scope and to go to a paediatrician GI specialised not a normal paediatrician (would not really help) . I am from Rome so my family is there, can I ask the name of the pediatric GI that you were talking about? I can always bring my soon there I guess.

Thank you a lot, I want to find out as soon as possible what it is, so that we know what we have to face.

Hope the best for your daughter, I hope she is doing well.

Grazie

 

[killcolitis]

Salvatore Cucciara at Polyclinico in Rome. He is considered the best ped GI in Italy. His team of younger doctors is quite good. Let me know if you have any other questions.

 

[killcolitis]

I sent you a PM.

 

[Farmwife]

Hi and welcome.
I have a 5 yr old also. She's a beautiful handful.
Grace was dx at 3 but has suffered since near birth.
One of her first dx was Eosinophilc disease (EGID's) an allergic disease of the GI track.
It mimics IBD and in my humble opinion it might be found to be in the IBD family someday.
It does sound like milk plays a big part but still make sure they rule out other things if your child doesn't get better.
No matter what bowel problem it is, you need answers.

 

[AlexIta]

Hi Farmwife,
Thank you, we will go deep to get answers for sure. Mattia is going to see a pediatrician soon. Hope to get blood and allergic tests, asap. I will post any news.

Thank u all for the invaluable help and support

All the best for your little one

 

[AlexIta]

Hello everyone,

Mattia has been checked, unfortunately by a Paediatrician; I was hoping more for a Paediatric Gastroenterologist. She check the history of my son and she asked us to do the Calprotectin test again. She suggested to wait a bit for the Calprotectin because it takes long to get down; so next month he will repeat the Calprotectin test. She also did palpation of the belly and of the colon. She told us that everything is ok and " she would be surprised if Mattia has IBD" and that Mattia most probably got a "virus". I asked the doctor to do other exams to exclude IBD, but she did not agree at the stage.

My son did not get any diarrhoea for 7 months, but unfortunately He had a bit of diarrhoea with blood last week. We do not know if he got milk at school, or something made with it, my wife is going to ask.

However, It looks to me always the same pattern of symptoms : 3-4 days with diarrhoea ( he goes to the bathroom 5 - 8 times per day); the 5th day he got a bit of blood ; not fever; a bit of stomach-ache just before to go to the loo; after 8-10 days everything is gone. Did any of you experienced something similar with your kids?

Now I am really puzzled :runaway: . Is it possible that someone with IDB not treated, does not show sympthoms for 7 months?

I understood that UC and Crohn`s are very hard to spot, basically they proceed by exclusion of other diseases. I hope to get some info soon.

Have a nice day and all the best,

Alessandro

 

[crohnsinct]

So sorry you are put in this holding pattern. We were also told for three years that my daughter's symptoms were not likely IBD. Even with a sister with IBD and two elevated FC tests the ped GI said, "we can scope now or wait another few months and retest, it is up to you". I couldn't believe he was willing to wait even longer. We scoped and she had Crohn's.

I can't speak to diarrhea symptoms as that is not how my daughter presents. However, her complaints did stop for about 10 months and her highest FC result was at a time when she appeared totally asymptomatic. Now her biggest symptom is pain so it is possible she just stopped complaining because no one listened but in the ten months I would think at least a few complaints would slip out.

Sending lots of patient vibes your way.

 

[AlexIta]

Hi crohnsinct,

I was expecting that only with diarrhea and blood in the stool, FC would be high. So it could easily be that even if you have normal stool and no blood, FC could be still very high.


I hope to get a response soon, we got to know that my son got cows milk at school, so i am still thinking that he could have allergic c to milk cows, CMPI. However, We need to go deep and understand .