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Pilgrim

Pilgrim

Joined
Jul 24, 2014
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1,573
Hello Friends. :ghug:

One of H's sisters (9 years old) has been having GI issues for the last 3 months off and on.

We visited our GP who ran labs which were good except her WBC is low. She has intermittent vomiting and diarrhea which we can't seem to find a food trigger for. She could be fine for a week and then up at night in the bathroom.

Any ideas on the low WBC? Anyone have this sort of thing with IBD?
 
:ghug:

I saw your post in the adult section re: siblings and was wondering what prompted that and was waiting for you to come clean.

Sorry I don't have any ideas on the low wbc but have you tried pulling gluten? How is her growth and weight...not that you can't be growing and gaining fine with IBD or celiac but I am just wondering.

You know my love affair with FC...I would be asking for that one now.

Cyclical vomiting syndrome?
 
Nothing gets past CIC!:shifty-t:

It's hard not to be paranoid. Just take a look around this forum and (as you unfortunately know...) siblings are popping up everywhere.

Her growth and weight are wonderful. So it also is for H. In fact, H looks too healthy! She didn't stop gaining weight except at her very worst, right before diagnosis. Our kids are sturdy looking.

We kept a journal of food and symptoms. She has gluten every day and the episodes of vomiting/diarrhea happen once a week or two. Her body woke her up at 5am with two episodes of explosive diarrhea. Last night she ate home made chicken fingers, fresh cut veggies, and a white roll. GP wondered about milk. She has a glass every day, too. So, that doesn't make sense either. I thought maybe it was salt. But she has upped her water intake and last night supper was not too salty.

I'm going to call and see about at least running the basic stool samples. I don't know if they will order fcal through the GP but maybe we should get started.
 
Fwiw
Ds used to vomit like that in the beginning prior to dx and after until he got remicade
But abdominal migraines
Lactose intolerance ( yeah oldest drank a gallon a week but was very intolerant )

Gastroparesis
All sorts of could be
 
Well being the calm patient person that I am NOT I would get that fecal cal started. Here the GP could order them. It is just a matter of checking the box on the lab form.

This way if you end up having to go to the GI you are two weeks ahead of the game!

Look up cyclic vomiting syndrome...it sounds similar to what you are describing. However there is a load of overlap when it comes to GI things so who knows. Good that you are starting to research.

Poor kid. Must take a lot out of her.
 
Abdominal migraines can be just vomiting
Ds had all of the above dx at one point prior to crohns
 
I looked up CVS and it could be possible however the episodes are supposed to be 4 or more per hour and when she vomits it is once or twice.

GP is closed now for the weekend but I am asking for stool testing Monday.

Thanks for the input and help. Back to the snow castles.
 
My son had similar episodes like that, but he also has Celiac so we always chalked it up to gluten. It turned out he actually had a stricture from his Crohn's. The food sort of builds up, has no where to go, and comes back up through vomiting. I really hope that's not the case for you, but wanted to toss that out there.
 
Just FYI re the FC... Stephen's GI told us it wasn't covered by Ontario healthcare. Don't know if it would be the same for children or if used as a diagnostic tool (ie S is already diagnosed). He did tell me he would order it if I wanted and the cost would be around $200-$250.

In any case, I do hope it's not necessary and a simpler answer is found. :ghug:
 
They didn't even know what Fecal Calprotectin was at our lab here in Ontario. We travel to MB as it has the closest Peds GI. They test FCAL as part of a research project so I think we bypass the costs because of that.
Not sure yet but a far as our 9 year old goes we'd likely have to get the regular samples done here (ova & parasites and whatever else) then get a referral, wait three months or however long it takes, and then try to get the GI to order it.
Makes me tired just thinking about it.
 
Labs of all sorts ordered except celiac and fecal calprotectin (high cost). Abdominal xray in a couple of days. GI referral in the works. She ws in really bad shape today. D 20 times. Vomited once. She's so sad.
 
Oh your poor daughter! Sending hugs and thinking of her :ghug:!
 
I don't blame her for being sad. I'm sure you are too, and scared.

I hope and pray this is something easy to identify and put to behind you. There is a good chance it is. I'm glad the tests have been ordered. Maybe even by the time results come back things will be better.

I hope she can get a break and time seems to pass quickly until answers come.
 
She feels a lot better and ate a little yesterday. The way it comes on seems so much like a virus to me but it keeps happening. It's not like the Crohn's I know so I am really hopeful that it is something else.
 
All of M's labs and the abdominal xray were unremarkable. She saw the GI today and he diagnosed her as constipated. So we go with the PEG powder regime. If anything Crohn's comes up he will rush to scopes. I am satisfied. Her symptoms are nothing like H and maybe she really is just constipated.

Good consult for H. Her hgb is much improved and we can stop iron for now. Also going to move to one or two ensure per day down from 3. Unfortunately, the fcal result was not in. Might have to repeat.

I dare to hope we can ignore crohn's for a while. At least after all of today's labs are in and confirmed to be great.
 
I am not going to say it. Nope! Not going to say that constipation isn't a dx. It is a symptom. There is a cause and it needs to be found. Cause could be as easy as fiber in the diet. Could be as complicated as IBD or motility disorder. But I am not saying it. Not to you. Not to the mom of a kid who was treated for constipation only to have another very real issue...not from a mom who went the same route with her younger one.

What I will say is constipation can be awful. T suffers with it terribly. Pain, vomiting, headaches then when she goes she is a different person.

I am also saying Woot! Woot! Normal labs and unremarkable tests! Yay! Onward and upward and I would sleep better with an FC result.

When I hit the lottery I am setting up a foundation to pay for everyones FC tests! What shall we name it? F.F.F.? Fecal For Free?
 
Don't get me worked up about fc. They cut funding for fc at our Children's hospital and so I can't get it for the older daughter as a diagnostic AND my GI can only get it for his patients on Humira. Yup, you heard right. The IBD kids on remicade, AZA, whatever have lost access at our hospital. Talk about ridiculous. That's why we go right to the OR for scopes if things get worse.
Anyway, I'm signing on as first customer for FFF.
As for similarities between the girls, he asked me if it seemed similar. I said no. No blood, good labs. That's way different.But he also drew the line between them with the ummm constipation . Head firmly in the sand for me though, for now.
 
Hugs two here with constipation and both normal blood work
Both scoped
One with crohns and one without
So it can be just constipation but our Gi really wanted to be sure since constipation and crohns is supposedly rare ( not so much on this forum but I digress)

The good news is you know your dd warning signs and as a mom will watch and if things seem off will get heard faster if need be
 
H's fcal came back at over 3000. How is that possible? Poop is great, labs great,energy is great. I'm supposed to stop her iron it's so good.She's going to scopes. What a huge disappointment. Can it be wrong?
 
WHAT???!!! That stinks! But sadly, yes we know of kids totally asymptomatic and with normal bloods who are scoped and inflammation is present. I am really, really hoping the high FC is from some other issue! Or maybe a test error! Yeah! Test error! I pick that one!

When are the scopes?
 
Sorry to hear that :(.
My son is asymptotic, great poo, great blood test results, growing very very well , lots of energy but FC level around 1200. We did the scope few weeks ago, result CD.

High FC could be related also to milk proteins. Is she having cows milk? CMPA could have the same symptom that CD has.
 
I don't think she has a milk allergy. She avoids drinking it so she wouldn't have had it in her system prior to the test sample.
 
The company sent another collection kit. I can repeat it but I'm thinking of saving collection for scope week to check the correlation of fc to damage.
We don't have a scope date yet. He said they would call to schedule.
 
Hope scope will be good.
I wouldn`t rule out milk, because it is almost in every food. My son looks allergic to it, so after the EEN the GI told us to avoid any food that may contain milk:ack:.

Do you know if there is any correlation between FC level and inflammation? I asked my son`s GI, he wasn`t sure.
 
Typically high FC means inflammation
We were told over 1000 is full flare .

Milk can be hidden I think Canada has similar labeling laws for foods they intend to have milk put in . But traces do not need to be labeled in the US at least .
That said baked milk ( milk added to cookie crackers etc..) breaks down the protein and a lot of true IgE milk allergic kids out grow milk allergy and some tolerate baked milk products first .

However true milk allergy IgE based causes hives shortness of breath etc ...
While cow's milk protein intolerance is not a true IgE allergy but is typically seen in infants and causes colitis like symptoms

To confuse things more most folks with crohns are lactose intolerant
Especially during flares and others all the time


But I don't think any of those would explain a 3000 FC
Sorry to hear about the number but glad they did the test so she can be scopes soon
 
So sorry to hear about the test results. Hope the scope gives you some answers.
 

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