Worried Sick

My daughters fecal calprotectin test has come back abnormal and our hospital appointment has been moved forward. I can’t stand the thought of there being something wrong with my daughter.

 

@Ed209,
I know it's a big worry for you and it's the not knowing and waiting that make it worse.
Stay strong as a family and try not get to stressed until you know what your dealing with.
Let the hospital to there job and find out the root cause as the bowels can have a number of problems and treated if not a cure and better to find out sooner to help her .
You could always ring them up and see if they can tell you anything to put your mind at rest or your doctor.
Lots of love and hugs to you all .
Love glynis x

 

I’m not sure what to make of it. I’ve done some reasearch of my own and it seems there’s no consensus of what’s normal or abnormal for a child under 1.

Her measurement was 65 ug/g, and was labelled by the lab at the hospital as abnormal and representative of a bowel disease with clinical intervention recommended. It’s hard not to be hugely concerned, but with only a letter to go by, what are we supposed to think? The appointment is on Monday.

I can’t find any studies that shed light on this. It seems to be that calproctectin levels are too unpredictable in infants; especially breast-fed babies to which our daughter is fed exclusively.

Got to wait and see what the experts have to say. Anything to do with your kids is absolute torture.

 

It could be she is intolerant to something like dairy or celiac or something and just needs looking into.
Try not google as our mind can over think..
Do something nice together this weekend like to the sea side for a day and remember the hospital will support you all and talk with you and put you at ease ...
Here for you too...
Love glynis

 

I was going to say could be she's intolerant to something, my sister's little boy is 4yrs now but when he was 18minths he also had the same test done and was abnormal result turned out he was intolerant to Gluten , now he is gluten and grain free and his results are normal and he's been fine ever since. It's easy to say not to worry but impossible to do as there your whole world and you do anything for them, my sister was beside herself, but it is better to stay calm and wait until you know what your dealing with, I'm hoping that it's just like Theo that she's intolerant to something.

 

We’ve been under the supervision of a private consultant as well as two NHS ones, and a milk protein or Soya allergy has always been the go to likely cause. But, after two months of absolutely no milk or Soya (with blood and mucous still present) the consultants have been scratching their heads somewhat which is why we were passed onto Birmingham Children’s Hospital.

The private consultant we are seeing is the one who ordered the calprotectin test.

 

I am so sorry, Ed. It is awful when your child has a medical concern, and it is an added challenge when they are little and cannot explain their symptoms.

@glynis brought up a very plausible scenario. Sometimes food intolerances or allergies can irritate the digestive system. For example, blood in stools is not uncommon for food allergies.

My daughter has a food allergy and was exclusively breastfed. She refused to eat any table food until she was a year old, yet she was still regularly exposed to her allergy via breast milk. Our pediatrician suspected dairy so I eliminated all dairy from my diet, and it did nothing.

Unfortunately, we did not realize her true allergy until she started eating solids and broke out in hives — egg whites. It made absolute sense when a blood test confirmed it, and I still wish we would have known sooner. There are eight common childhood allergies, it may be necessary to try eliminating all of them.

Just wanted to share that anecdote in hopes it might be a possible better outcome versus some of the other options. Will be thinking of your family!

 

Sorry about that Hope it turns out there is nothing to worry about.

 

Hi Tinker Bell, we’ve been effectively trying to find an allergen for over two months but there’s no pattern to any elimination diet that my wife has done. We suspected a milk protein allergy long before we saw any Drs, but nothing we do foodwise seems to make any difference. Our biggest concern prior to last week was weaning her. We didn’t want her to have an anaphylactic shock, but after seeing a dietician, we were told to start weaning her on root vegetables. So far she has had carrots, potatoes and a banana. I know a banana is not a root vegetable but I don’t think she is allergic to them. In fact, she has been absolutely adorable eating solids for the first time. She really loves her food.

The positives are that she is in the 98th percentile for height and the 94th for weight. They were all happy that she is obviously thriving which is why we didn’t think it should be anything to worry about, until this result.

 

Just to be clear we’ve tried eliminating: milk, soya, egg and fish. Symptoms persisted dispite eliminating these foods entirely. This has been ongoing now since February 10th.

 

Have you tried eliminating gluten, as I said in my earlier reply it could be gluten?

 

Our baby grandson has the same problem and needs special milk and only root veg and bananas till see the specialist .
No soya,milk,eggs,Dairy ,Gluten a lot more...
Love glynis

 

We were prescribed neocate by the specialist but he told us to only use it as a last resort as Breastmilk is still best.

 

Sorry to hear this, as Glynis and Tinkerbell said, hopefully it will be something that can be easily treated. Thinking of you all and stay strong man.

 

@Ed209 ,
It's a worry for them so fingers cossed Monday will be a move in the right direction for her.
Got my two grandsons tomorrow 5 year old and 8 month old.
My hubby off for the day with sons for sons stag nigh.
They going clay pigeon shooting and Quodbiking then home to get changed then out for a meal and late night drinking about 10 people.
Both sons coming stay at ours Saturday night coming back in taxi with hubby so will be nurse maid all night if they are worse for wear...hahaha
sick buckets ready...
Quiet night in after grandsons go home and a bottle of wine for me till the men come back...
Love glynis

 

So sorry to hear this, @Ed209.

 

Ed so sorry you have the worry until Monday. The good sign is that she loves her food. It must be cute to watch this.
I don't have anything to add here except I am hoping the best for you and your family.

 

Hello Ed
You’re such a good man in supporting others. I don’t post much on here now but I browse and I’m so sorry for your worry about your baby girl.
So much thinking of you and your family.
Warmest wishes to you all.
Eve

 

Thanks, it means a lot. We go to the hospital tomorrow.

 

I hope you get the reassurance you need xx

 

So it turns out the lab report was incorrect; whoever filled it out got it all wrong. If I hadn’t have read into calprotectin then I probably wouldn’t have slept all weekend. Me and my wife couldn’t find anything in the literature that suggested our result was abnormal. This is what calmed me down because my gut instinct was that they were wrong. Now it’s confirmed.

 

It is unfortunate that you and your wife had to anguish over this needlessly, Ed. Our instincts are often correct, I am very happy that this proved to be the case.

 

I'm so happy for you all, Ed it means she could be like my nephew and intolerant to gluten

 

She could be intolerant to many things. I think we’ll only find out when we feed her something that is the allergen.

 

Just saw this Ed and am glad the report was incorrect...keep us posted on her weaning. x

 

I am so thankful this turned out to be a wrong report reading. So sorry it happened.

My husband had a heart test which reported he needed immediate open heart surgery. OMG. When he was rushed in for another test for his arteries the report came back that he had the arteries of an 18 year old! The original read was wrong. Our guts told us something was not right. But we had to rush to get things in order for an open heart surgery operation. Scared us both to death, Ed. We were both rather....crazy for weeks following that ordeal.

Now if something comes up we try not to worry until further tests are completed.

 

Hey @Ed209 sorry to hear about that. I don't have kids of my own but my first nephew was hospitalized for a while and it was very hard on my sister.

Hope it's something simple. I'll be sending you happy thoughts your way.

Best,
Zug

 

@Ed209,
So glad your daughter is ok and will be when find out any food that effects her...lol
I'm having that problem and could be IBS after gallbadder taken out.
Now waiting for a CT scan to check for rogue stones or other problems and see a abdominal consultant...
Love glynis x

 

Thanks for the support. You’re all awesome.

 

I wish I saw this earlier, I worked in a lab for many years and I can tell you that I won't have anything fine with out being tested twice. You wouldn't believe how many results come back incorrect due to using wrong vaccutainer or incorrect processing due to technician laziness.