Undiagnosed, advice

[Daisybump]

I have a 20 month old little girl who has had bowel issues since birth.. This is a very long story but I'll try and make it as short as possible.

Basically my daughter has frequent diarrheah and loose stools that contain mucous and occasionally blood she gets intense abdominal pain, she has a hard time digesting fibre (or anything on very bad days) her stools smell like acid and burn her skin/ sometimes they are gritty, on her first birthday she was particularly bad and both the inside corners of her eyes where blood red but the outside corners where normal the doctor said it was conjunctivitis the optcian said it was not.. also when she's bad she gets little spots on her face and sunken in eyes she's very pale.. We have been down the allergy path and on elimination diets but she can have trouble with a certain food one day and be fine with it the next.
She has been diagnosed with a milk allergy, reflux and toddler diarrheah but she no longer has medication for reflux and I don't think she has an allergy to milk just an intolerance like everything else. Toddler diarrheah does not come and go and should not cause pain or bleeding..
Since birth she has had approximately 10 episodes where she has screamed in pain for hours until she finally vomits and diarrheah at the same time leaving her lying lifeless on the bed only to be fine the next day..

Last week we had one of these episodes that lasted longer than usual and he was hospitalised and put on a drip due to severe dehydration in hospital she tested positive for infection, inflammation and had low blood protein levels which caused swelling, she had an ultrasound that showed inflammation in her bowel and is anemic.
After a week in hospital in agony (on morphine for pain) she just suddenly got better (still anemic though) the doctors failed to find out what was causing the problem she had a barium scan on Thursday which was done by a guy who clearly didnt care about finding out what was wrong with her..
When daisy is good she is a normal clever toddler she has always been small but gains weight doctors see her and think I'm crazy.
She had a fecal calprotectin 6 months ago that came back negative, would that happen anyways if she was not having a bad spell?

She's been tested for lots of things all to be negative they will not look at the possibility of crohns because of the fecal calprotectin results 6 months ago but surely her hospital visit cancels that out.. I just need advice and if her symptoms sound familiar to yours/your children's?

Oh and the barium xray was done while she was drinking the barium she had one mouthful out of it and refused to rest he took xray while she swallowed.. The barium would not have had a chance to reach her intestines.

I've missed out some things due to the length of the post.

Thank you.

 

[kernelmom3]

I'm so sorry you're going through this and feel terrible for your daughter!!! Has she had a colonoscopy or endoscopy? I know it's invasive but it's something to think about. I have two kids with Crohn's (and a sister, cousin and father-in-law) and my third child (my youngest) is going to do the fecal test to get a baseline before anything invasive, but he has no symptoms THANK GOD! I hope you get some answers soon!

 

[Daisybump]

No colonoscopy as yet but I think that will be the next step, shes so young though she would have to be put to sleep for it. I just wish we knew what it was so then we could treat it, I feel like she's been in pain all her life. its so sad both your children have it I always think school must be hard but it's good they have each other Thank you for your reply.

 

[my little penguin]

Regardless of age all kids are given twilight sleep for colonoscopy and adults for that matter in the US.
Ds has had multiple scopes with no issues

Have you looked at fpies ??
It can cause diarrhea and vomiting to the point of dehydration
For milk allergy - are you reading all labels and calling about cross contamination on production lines ?
It can cause inflammation and diarrhea and rectal bleeding
But if your not avoiding all traces of milk not just overt things like milk
Milk protein can takes weeks to get out of the gut so you wouldn't think that was still the problem

 

[my little penguin]

What Does FPIES Stand For?

FPIES is Food Protein-Induced Enterocolitis Syndrome. It is commonly pronounced "F-Pies", as in "apple pies", though some physicians may refer to it as FIES (pronounced "fees", considering food-protein as one word). Enterocolitis is inflammation involving both the small intestine and the colon (large intestine).

What is FPIES?

FPIES is a non-IgE mediated immune reaction in the gastrointestinal system to one or more specific foods, commonly characterized by profuse vomiting and diarrhea. FPIES is presumed to be cell mediated. Poor growth may occur with continual ingestion. Upon removing the problem food(s), all FPIES symptoms subside. (Note: Having FPIES does not preclude one from having other allergies/intolerances with the food.) The most common FPIES triggers are cow's milk (dairy) and soy. However, any food can cause an FPIES reaction, even those not commonly considered allergens, such as rice, oat and barley.

A child with FPIES may experience what appears to be a severe stomach bug, but the "bug" only starts a couple hours after the offending food is given. Many FPIES parents have rushed their children to the ER, limp from extreme, repeated projectile vomiting, only to be told, "It's the stomach flu." However, the next time they feed their children the same solids, the dramatic symptoms return.

From
http://www.kidswithfoodallergies.org/page/food-protein-induced-enterocolitis-syndrome-fpies.aspx

 

[my little penguin]

http://www.kidswithfoodallergies.org/page/food-allergy-topics.aspx

http://www.kidswithfoodallergies.org/page/newly-diagnosed.aspx

 

[Daisybump]

Hi, Thank you. Oh I didnt know that, as adults we stay awake here in the uk..Yes we did look into fpies but it just didn't seem to fit she has flare ups it's not continuous and doesn't relate to one food we have done strict elimination diets. as for dairy we are a dairy free family due to my older daughter being intolerant so no deffinatly no trace as our older one is super sensitive we check everything.
Oh any the vomiting and diarrheah were days appart she tested negative for a virus and the main issue was the abdominal pain and swelling in her abdomen.

 

[my little penguin]

Have they looked at pseudo intestinal obstruction ?

What is intestinal pseudo-obstruction?
Intestinal pseudo-obstruction is a rare condition with symptoms like those caused by a bowel obstruction, or blockage. But when the intestines are examined, no blockage is found. Instead, the symptoms are due to nerve (visceral neuropathy) or muscle (visceral myopathy) problems that affect the movement of food, fluid, and air through the intestines. The intestines, or bowel, include the small intestine and the large intestine, also called the colon.

Intestinal pseudo-obstruction can occur in people of any age, but it occurs more often in children and older adults. Children can have a long-lasting form of the condition called chronic intestinal pseudo-obstruction (CIP). CIP in children is usually present at birth.

Learn More about CIP in Children

http://www.aboutgimotility.org/disorders-of-the-small-intestine/intestinal-pseudo-obstruction.html

The bloating of her belly makes me wonder
Has she had a referral to great ormond street hospital in London
They tend to handle gi and ibd issues in kids verywell

 

[Maya142]

Scopes sound like a good idea. Kids are always put to sleep in the US (and adults are too!). The scope itself is not so bad -- it's just a nap! The prep is pretty miserable, but it's just one day. Some kids do have low Calprotectins and still have IBD.

A scope + some sort of small bowel imaging (usually an MRE) is the gold standard for diagnosing IBD.

I also agree that looking at motility disorders is also a good idea. Gastroparesis (delayed gastric emptying) can also cause significant bloating.