Undiagnosed child, with upcoming doctor's appointment- questions?

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

P

Pipo1234

Joined
May 23, 2015
Messages
21
Hi, I'm new here and I didn't know where to post, so please let me know if it would be better if I posted on another thread. I'm really looking for some advice. I have a five year old son who had a very bad viral infection in February. Ever since then he complains of a pain in his tummy before he passes a stool on a regular basis. His bowel movements are completely inconsistent and can go from constipation to diarrhoea sometimes in the space of a day. He can also sometimes pass four stools within 8 hours. These type of occurrence sometimes seems to disappear, leading me to think things have gone back to normal, only for it to reappear. I have been to the doctors on many occasions since February. He was first given movicol because the doctor suspected constipation. This did nothing. I pushed the doctor into testing him for an intolerance, I suspected milk and kept him off it and it didn't seem to help. He was seen by a consultant on wed who said it was a secondary lactose intolerance which would go away, this was without any tests. Anyway on Friday he had diarrhoea and the pains again and has had them again today. He has not had anything lactose based. I spoke to the doctor because my husband suspects Crohn's. I'm going to see the doctor on Tuesday but I would really appreciate any advice people may have?
 
Hi pipo,

You are right to be concerned and ask for testing. At this point it could be quite a few things and I would ask that IBD be checked into.

A very helpful test in pointing you towards a functional or organic cause for his issues is the fecal calprotectin test. It is a non invasive stool test. Elevated numbers will guide the doc towards further testing (scopes, imaging etc) in an effort to find a cause for his issues.

There are also blood tests they can run but not all kids show inflammation in their bloods and even if they do it is less specific to the gut.

Good luck at your appointment. Until then you may want to start a log with foods eaten, bowel habits, pain occurrances with ratings and listing what alleviates the pain and any other symptoms that might occur (headaches, vomiting, extreme fatigue, weight loss etc). When you see things all laid out in front of you it is easier to see patterns etc.

Oh and one other thing...if he takes any non steroid anti inflammatory meds (think ibuprofen and the like) you will want to stop as they can cause gut issues and you want to be sure that those are not interfering with the goings on.
 
It wouldn't hurt to toss in a Celiac panel, just to rule it out. People can present with some pretty strange and erratic symptoms.

How is his growth?

I hope you get some answers soon.
 
Thank you for the replies. My own go did suggest coeliac as well as lactose, but the consultant we saw on wed just diagnosed him with the secondary lactose intolerance without testing. I have kept a food diary but cant seem to see a pattern. It's like he has flair ups of it every couple of weeks and in between its every so often, he went 9 days before Thursday with no complaints. I'm only 5,2 and his dad is small and so far he has stayed on the same centiles for weight and height. He has lost a little bit of weight in the last week, but I put this down to a growth spurt that he has had. He has not other complaints in terms of headaches etc. the only other thing was that I noticed in feb and March that he had a mouth ulcer on his gum. I've just found out today that his second cousin was diagnosed with crohns last year, his aunty on the same side has IBS and was put on goats milk at 6 months because she couldn't keep anything else down (this was 37 years ago). On the advice of another member I had a look at the MAP vaccine website and it makes sense.
 
It would be worth asking for a faecal calprotectin test to start with. At least it is a painless test and would hopefully show if there is any inflammation. My sons symptoms used to come and go and this was the only test that showed anything and made them take notice and do scopes. Good luck.
 
Welcome to the forum, Pipo. I am sorry to hear your son is having such troubles. You have already been given great advice, but I just wanted to offer you my support. My son had a bad flu which also seemed to the thing that triggered his Crohns. He also had mouth ulcers and constipation. Hang in there. Once you get some answers you can get a good treatment plan going, and get your boy on the road to feeling better. Take care!
 
Hi Pipo and welcome.

My girl is 6 now but dx at 3.
We also had a long hard and confusing road to her being dx.
A lot of your child's symptoms sounds familiar to what Grace had/has.
Keep pushng until get answers!!!!!
 
Thank you all so much for the replies. I will post tomorrow once I've been to the doctors and I will push for that test as well.
 
Ok, so bloods taken - not all results are back, but shows esr and crp levels raised and neutrophils raised. Doc said these were markers for IBS but I spoke to a diff doc from my usual and she doesn't know the whole context so was pushing for it to just be a bacterial infection. I said I wanted that stool test done and she said specialists do it and she would have to look into it, I have a follow up on sat and should have the results for lactose and celiac then. He is also short of iron but not anemic. What would anyone's thoughts be?
 
ESR and Sed rate can be elevated for a number of reasons as they are not specific to the digestive tract. However, that along with the lowered iron would certainly be enough here to get you a consult with a specialist and move to pulling that fecal calprotectin test. If the FC is elevated they would move to scopes. Of course all elevations in these tests could also be an infection of sorts. Did they test for infections? That would certainly be another next step. I know our general pediatrician can order an fc test but perhaps that is just something specific to my area.

Good luck with the follow up on Saturday. I sure hope it is an easy fix.
 
Thanks for your reply, they didn't test for infections but in march when he had a flair up they did test a still sample for infections and that came back clear
 
The rest of the results are neg for celiac and slight allergy for cows milk, although the note on the results says it's not unusual for an atopic child to show this so it's not definitive. Stool samples sent away today, one for bacteria and one for the calprotectin. It's like pulling teeth with the docs, the one I spoke to yesterday is convinced its bacterial, I said ok that's fine, but it doesn't explain the full context of what's going on. Even if he did have a bacterial infection, I think he has crohns and the infection caused a flair up. We are going back on Saturday, bacterial results will be in but the doc said it would take two weeks for the fc results. The doc didn't even know what the fc test was. I'm going to ask for him to be referred.
 
This happened for us.
They found C. Diff in Grace and told us that was the issue ( and for some it is) but sadly it wasn't the C. Diff.

Of course bacterial infections can cause all sorts of problems and can be hard to treat.
But you know your kid best!
Keep pushing until your content with the answers.


Hugs
 
Thank you for your reply. It's so frustrating, I know that even if the result came back as bacterial he would still continue to get the same tummy pain with flair ups, so it doesn't matter to me if the result is bacterial. The problem is at my surgery, we see diff docs, so they all have their opinion without knowing the context and it's a complete lack of consistency. The lactose results were barely above the normal range. I just have to keep pushing the doctors. I really know very little about crohns, but I feel like the doctors do t believe because of age, I think if he was in his 20s it would be taken more seriously.
 
Good luck, lots of kids have crohns...Its not really that unusual. My son was diagnosed at age 12, he's only 13 now. Our pediatrician did blood work and fecal calprotectin test and then we were referred to a GI who did the scopes right away...mouth ulcers can also be a symptom of crohns, my son had them. It does sound like you are doing all the right things, sounds like a specialist is in order, something funny is going on and maybe a GI could help, whether it's crohns or something else. Keep us posted and good luck!
 
Well if he does have a bacterial infection you are going to be forced into a holding pattern of sorts. Bacterial infections will raise FC so even if FC is raised, you won't know if it is due to infection or another cause. So, best to treat the infection and then retest to make sure the infection is clear and then retest FC.

I know it is frustrating but you have to deal with the more obvious reason and the things muddying the water first and then systematically move through the other options.

I do believe you need a good pediatric GI because even if it isn't IBD, something is going on and you need someone well versed in this area to help you through.

Hang in there mama!
 
So, I've just given him a sandwich with butter and noticed a red mark on his face where the butter had come into contact with his skin. I've just put butter on his cheek and the inside of his arms (this was what I was told to do by my gp with tomato ketchup to see if it was causing a skin reaction) his face and arms went bright red and he said it was itchy!? Could it possible be lactose after all? Or can conditions such as IBD aggregate slight allergies that are already there?
 
Get to a pediatric allergist
Not a gp
If he tested IgE positive to milk that is not lactose intolerance
That is the kind that can cause anaphylaxis and kill you period
Past reactions are not indicative of future reactions .

See this site which has a medical review board for scientfic based information
 
I think you're right in advocating for your child and pushing for further testing, but I think you're jumping the gun a little in being so sure he has Crohn's. Many different issues present the same and doctors tend to systematically test, starting with the most obvious conditions. Waiting can be difficult but you will learn patience through this process. Kids sometimes go years before receiving a diagnosis. My girl is 10 and we're still searching for a diagnosis that really fits. Wait for the stool test results and know that we're here to support you no matter the outcome.
 
Completely agree with dancemom
For along time I was convince ( and allergist and GI ) DS had EoE .
It took a while 1.5 to figure it out but no EoE just crohns
 
Thanks for the replies, I see what you mean about the difference between the two. I don't definitely think it is crohns at this point, it just seems that what he is experiencing seems to fit to a certain extent. At the end of the day I'm in the dark and just trying to find some sort of answer. The thing with the butter today has just totally thrown me once again.
 
My son has/had some of the same symptoms as yours is expiriencing, however he's had these issues since he was a month old(he's 8 now), he's also had some bloody stools. My expirience is since diarrhea and costipation are so common with kids they don't really treat or see them for "just" those things (you get written off a lot). He's also had random bouts of vometting. Since he had some bloody stools and since I had recently had c-diff the pedi saw him.

His pedi ordered bloods and 2 stools srudies. Bloods came back normal, first stool study showed his normal gut bacteria was greatly reduced his second stool study (the fecal calproctine) came back slightly high. He got referred to a GI.

GI wanted to diagnose IBS right off the bat but went ahead with scopes. Visually clear, biopsies show different. He was diagnosed with eosinophilic esophagitis with cellular changes in his colon and eosiniphils in his duodenum and colon (these can be related to early IBD but no definitive proof so wait and see if he gets worse)

My point is, you know something isn't right. It could be an infection still going on or it could be something more severe. Dont stop pushing for answers but don't automatically think it's the worse case scenario. I hope you find answers soon and your boy gets some relief!
 
It sounds like you had to go through an awful lot in order to get a diagnoses, I completely agree about the age thing as well, lots of things do just get written off. Saw the doc today and I almost cried in the surgery. The appointment was suggested by the surgery so we could discuss the blood results in full. My husband and I got in there and the doc just went over what had happened in terms of us seeing a consultant at the hosp the week before, at this point I was thinking this is a waste of time, I had to go over heat had happened once again because there is no communication between any of them. He then asked me where I wanted to go from here, I said I'm not the doctor!!! He suggested a referral to a diff hosp but wanted to wait until we had got the results back from the stool samples, the fc I was told would take two weeks. I asked if the referral could be done today to save time, the appointment we finally got is on the 17th July. At first he said no and my husband had to really push him into doing it. He agreed that the bacterial stool sample was a waste of time because it was done a week after he had the flair up and it wouldn't explain the whole context of what's going on. My son had tested slightly pos for a milk allergy and I questioned whether this was right because he has been off milk for over two months now, he said that he should have been drinking milk for 6 days before he had the test done!? I showed him pictures of the rash that came out on his mouth and as from the butter and he said he has never seen it and doesn't know what it is, I asked him if he could give advice and he said no. He said that it's not in his opinion crohns because he doesn't have stools where you can see blood. My husband and I felt that the whole thing was pre meditated, they don't know and have washed their hands off it. So until we see the specialist I feel like there is nothing I can do to try and help my son, he came out in the rash on his mouth again the afternoon and had another bout of diarrhea.
 
Glad you got in with the specialist
Too many things over lap in gi land so
You need minor tests first then move up
DS was dx at age 7 - no blood in his stools just constipation
But it took 8 months from starting to see GI for the second time
First time was at age 6 so be prepared running towards a dx doesnt help either
It's frustrating but the docs need to be sure since the meds are extremely serious and not a fix . Plus a life long condition where 75% have surgery within 5 years of dx


We ran towards EoE for over a year convinced DS had this
Other docs told us he had this
Eventually DS 's GI was even convinced
Guess what no EoE
Then GI thought allergic colitis
Yep not that either

Milk allergy test are you referring to lactose intolerance test
Drink milk ( measure breathe etc))) as being positive

Or IgE ( rast blood / skin prick test ) for a milk allergy

Lactose intolerance is in no way shape or form an allergy
It is merely an intolerance that can cause diarrhea abdominal pain mucus vomiting bloating etc... But shouldn't cause rashes /hives/swelling /trouble breathing etc...

My oldest has lactose intolerance found on a scope ( done due to similar symptoms of crohns and sibling aka DS with crohns )
 
I really do appreciate you replying. It's beginning to dawn on me that this will be a long process, this is not the type of situation that I find easy and I have a tendency to want answers straight away, but patience is something that I'm going to have to learn. My son was diagnosed with a secondary lactose intol by 'sight'! And the milk allergy with through a blood test. For now that's what I have to go with until the fc test comes back and we see the specialist in July. I'm just going to continue to keep a diary of food etc until then. The advice I have been given in this forum is excellent and I think it's brilliant that people are willing to take the time to respond.
 
Milk allergy by blood test and the rashes can be very serious
So get to a pediatric allergist asap
Most docs don't take milk allergy seriously
It can kill just like peanuts
But only an allergist can interrupt the results as to whether your child has a milk allergy or not .

If he does
Get educated on it
Have a food allergy action plan from the allergist and always carry an epi pen /auvi-q on him at all times
 
My youngest was diagnosed with a milk allergy several years ago (by RAST test). She did have respiratory issues that the allergy may have complicated. We avoided milk and milk products very strictly for a year then retested. She did outgrow the allergy. Milk is hidden in a lot of things so read labels very carefully. Allergies are a bummer.
 
He tested pos but only slightly the notes read that if he is atopic, which he is, then it isn't an unsual result. He has always drank milk until around March when I cut it out because I suspected lactose intolerance. The rash he got from the butter is the same as he had at Easter when he had a flair up in terms of his bowel movements.
 
It's possible that he had a slight allergy to milk or an intolerance and once you removed the milk completly it allowed his body to produce antigens to it. When you gave him milk again it caused a bigger reaction. It's happened to my husband with shellfish. Also an allergy may not present as anaphylaxis, some allergies present as a stomach ache, diarrhea ect.

Did your son have trouble with formula or breast milk when he was an infant? I breastfed my son till he was a month old when he started having bloody diapers. I was told he couldn't digest the milk protiens and was put on a special formula. Infants are supposed to outgrow this by 2 yrs old but for some kids it turns into an actual allergy.

I suggest seeing a pedi allergist it may help while you wait on some other answers. For some kiddos it's a long process to get answers and some kiddos have a diagnosis only to turn out it was an incorrect diagnosis. I hope you get some answers soon.
 
I agree with Lookame
DS outgrew 8 tree nut allergies which he had previous anaphylaxis to
Allergist stated he must consume at least one serving per month to reduce the risk of it returning .
A lot of studies show when less than a serving is consumed the risk of reaction increases .

Please see an allergist to determine what is the issue
 
The gp we saw suggested re testing the milk allergy once we had seen the GI consultant. The stool sample for bacterial came back normal so just have to wait for the fc result. I knew it would come back normal.
 
Ok I have seen anaphylaxis twice so keep that in mind
If your child went from being sensitive to milk ( GI issues etc that were showing up on IgE blood tests ) and you with held milk and now is getting hivey rashes on his face he could be at risk for anaphylaxis which happens quickly without warning sometimes to traces of an allergen . You will not have time . Which is why docs prescribe epipens
Throats close in a matter of minutes . If the kid loses consciousness there is a 90% chance they will not be able to save the kid or prevent brain death.
Benadryl /antihistamine will not stop a reaction it's like the stewardess on the plane during a plane crash it just makes you feel a little better but not going to stop the plane from crashing .

If your in the UK please ask for a allergist referral asap .
If he is not allergic that is great but not something I would be willing to wait on knowing what I know now.
1 in 13 kids has food allergies and most allergic reactions happen wothout a FA dx.
 
We took him off milk and used a dairy free margarine in March, but he was still having dairy through cheese and yogurt. Previous to this he was getting red marks on his face where tomato ketchup and butter would come into contact with his skin, not raised just a red mark where the food item had been. We then started to reintroduce butter and it was fine, he was also getting milk periodically at school, but I was unaware of this - during this time he wasn't having the marks on his face. He got the marks again last week after eating a sandwich with butter. Doc advised to test on inside arm and the same marks could be seen. Since then he has not had the marks if his skin is exposed to butter. The results of the milk rast test were:

Cows milk RAST test - no action 0.44kUA/L Normal range 0.00-0.34kUA/L
Allergen specific IGE antibodies can be found without clinical reactions, esp. in atopic individuals. They are not proof of allergy and are not useful for screening. Suggest allergy referral for assessment if indicated.

That's what was written below the results, he is atopic. The doctor said it was a slight allergy. The pattern that I can see is that when he gets a flair up of issues with his bowel he sometimes gets those marks on his face when exposed to certain food stuffs. I would attach a picture of the red marks but I'm unsure how to do it.
 
Results are expressed in terms of a grade or as a serum concentration of specific IgE
Grade 0 = <0.35KUA/L (negative)
Grade 1 = 0.35-0.7KUA/L (weak positive)
Grade 2 = 0.7-3.5KUA/L (positive)
Grade 3 = 3.5-17.5KUA/L (positive)
Grade 4 = 17.5-52.5KUA/L (strong positive)
Grade 5 = 52.5-100KUA/L (strong positive)
Grade 6 = >100KUA/L (strong positive)Note Units are arbitarily related to total IgE international reference concentration)

These are the nhs ranges for the test
 
Think of a Rast test like a pregnancy test it can't tell you how pregnant you are
Low positive values can mean severe reactions and high values can be just a rash
It's not predictive if the type of reaction your kid can have .
You can aslo have a postive test and not be allergic just sensitive ( DS has lots of those since the proteins are confused with pollen structures by the body so he is not really allergic )
The issue is a GP is generally not trained to distinguish what is a true allergy and what is not .
Only an allergist is trained for that
Just as a GI is trained for crohns and other issues .
More later
 
The gold standard for a food allergy is an In office oral food challenge where you consume at least a single serving without a reaction ( this can be flushing rashes hives wheezing GI distress ( vomiting diarrhea etc))
So if he can drink an 8 oz glass of milk without a reaction then it's not an issue
But don't try that at home unless a doc says it's ok first ;)
Not a doc just a mom

That said when they had us pull milk for possible GI issues we had to pull all forms of milk ( including cheese yogurt etc..,) otherwise you don't really know what is causing the issue
 
Don't worry, no glass of milk will be given without speaking to the docs! I get everything you are saying and I really appreciate the fact that you take the time to respond, so thank you.
 
His FC results came back today. 157 micrograms per gram and doc said should be below 50. Doc admitted didn't know much about it and results will be passed to the GI ped we are seeing on the 10th July. I have no idea about the results range so would be grateful if anyone could offer any insight. The same sample came back neg for bacteria.
 
FC shows there is inflammation somewhere in his digestive tract. It could be from a virus, long term nsaid use, ibd, or edig (my son's elevated FC is due to EE, a type of eosiniphilic disorder).
 
We use Quest, and a 157 FC would be considered upper limits of normal for a child. Probably worth repeating in the future though.
 
Lookame is right. FC can be elevated for a number of reasons and it is typically used as a screening tool to see who may or may not need scopes.

The ranges differ by age as younger children tend to have higher FC values normally. Here is the states most labs use the following ranges:

Children 2-9 below 166
10-59 below 50
older than 59 below 122

Some labs may use different values. For example, my daughters lab uses below 166 for 10-59.

So depending on your particular labs reference range he may be a bit elevated or may be right at the upper range. Either way, be prepared for another waiting period. The GI may ask for a retest. My daughter's test result was 1134 and she has a sister with IBD and we were still asked to wait and retest. Now with a dx of Crohn's a previous normal result of 51 her last test came out at 256 and again...wait 8 weeks and retest.

You are probably getting the idea by now. Hurry up and wait...then wait some more. What we need around here is a patience pill!

Glad you are getting in to the GI and it is great that you got the FC test done now so you are that much further along.

Good luck and keep us posted!
 
Thanks so much for the replies, yes patience is well needed! I've learnt that much! I got a print out of the results and it's 157ug/g and their range is 0-60. We have taken him of dairy completely and he is like a different child, back to his normal self, no flair ups and only complaining of the pain twice before he passed a stool in the past two weeks.
 
Reference Ranges for Calprotectin (Inflammation)
Inflammation Range (mcg/g [ug/g] of feces)
Normal 0 - 50
Borderline (Retest 4-6 Weeks) 51 - 120
Abnormal > 120

Just had a thought, if the range on the results was 0-60 ug/g, then surely the results are for the inflammation range not age?
 
It depends on his GI. Most GI don't get super excited with values under 200. I'm not 100 percent sure but I think there are some viruses that can cause a level around 156. His GI might feel scopes are necessary with a FC of 156 or they may have you wait and test later.

My son's FC was 136 and his GI was iffy on scopes, especially since there were no other indicators of disease. Since I have severe crohns and his slightly elevated FC he decided to go ahead with scopes. That being said my son has had a long history of digestive issues with blood in his stools which we discussed (which also may have persuaded him to do scopes).
 
Last edited:
Yeah, the problem was my gp had no clue. She actually said that to me and asked what I knew about the test from the internet! I will just have to be patient and see what the GI says. I just have a habit of wanting to know the ins and outs of everything!
 
Aaaaah! You are playing our favorite game, "Outguess the GI". Welcome to the club.

Unfortunately, you really do have to wait and I wouldn't be surprised if they say wait some more and retest. FC can go up rather quickly but it takes a while to come down. So if there were a bug of sorts that caused the rise, the GI will want to wait and get a second value to see if FC is trending down or up. Trends are just as important as values. A second test will really move you a lot closer to answers.

But bright side is you are ahead of the game and walking in to GI with one test already done!

Don't forget that a milk protein allergy can cause an increased FC (doesn't have to though) but not as high as IBD would. Given how well he is since pulling all milk I would be highly suspect of the milk protein.
 
Yeah im terrible, my gp hates me because I go in with a diagnoses before being seen! I agree that it points towards milk. Im wondering if it's a lactose intolerance which I will discuss with the GI as well. I did think it would be an idea to get the test done before the appointment, saves time! Plus the same stool was used for a bacterial test and that came back negative.
 

Similar threads

P
How long on EEN before your child had solid motions again
Replies
5
Views
727
padrach3
P
C
Looking for advice
Replies
12
Views
3K
mullyjl
mullyjl
C
Your thoughts, please. 10 yr old.
Replies
13
Views
1K
Danper
D
T
Advice please I’m a newbie
Replies
11
Views
2K
Constipatedguy13
C
M
7 year old in pain not diagnosed
Replies
4
Views
1K
my little penguin
my little penguin

Latest posts

Back
Top