Doctors don't know what is wrong with child-need help diagnosing

[bobiddia]

I have taken my 10 year old daughter to a pediatric gastroenterologist, a pediatrician and a naturopath, and they cannot figure out what my daughter has. She has tested negative for parasites, lactose-intolerance and celiac disease. I put her on the FODMAP diet during an episode and it didn't do anything. I have kept a food diary and there haven’t been any obvious food triggers. Acupuncture during an episode appears to lessen the duration.

My daughter starting having what I call ‘episodes’ when she was 7. The episodes have lasted 3, 7, 8, 9, 14 and 26 days. She had 7 episodes in 2019, 2 in 2018, 1 each in 2017 and 2016. Her symptoms:

*Abdominal pain wakes her up several times during the night. When she first wakes up, she is not hungry because her abdominal area hurts so much. Later in the morning and for the rest of the day her appetite is normal. The abdominal pain is reduced when reclined in the recliner chair. Describes abdominal pain as someone kicking her stomach. Some episodes the pain is above the navel, others a big circle around the navel, other times on either side of the navel.

*sore throat, achy body, no energy
*dizzy when standing and walking, cannot think/read/do homework, brain is foggy, pain across the forehead, above her eyebrows feels tingly, middle of her brain and side of head feels weird,

*lower back pain
*has a bowel movement every other day instead of daily.

She NEVER experiences these symptoms: nausea, vomiting, fever, sensitivity to light or sound, pale skin, dark shadows under eyes.

Thank you.

Your poor dd. I'm so sorry she's going through this. Sorry I have nothing that will help you except a bump for other users. Good luck I hope she gets to the bottom of it soon x

I don't think asking a bunch of strangers on the internet is a great tool for a diagnosis.

well really I don't see how we can help where the people you have consulted have failed- but what did they actually say the issue was ? is it that someone has given a diagnosis and you don't agree with it?
Is your DD otherwise well, ie growing and developing normally and able to engage in a full range of activities, generally happy and content?

Abdominal migraine or mesenteric adenitis are possibilities?

No need to jump at the OP, she isn’t replacing medical advice, just asking if anyone has ever encountered similar...

I have no medical qualifications, so could only speculate, but I’d say sometimes kidney pain can feel like stomach pain.

It’s also reminded me of an old episode of House MD where a woman couldn’t stand, as that caused one of her kidneys to pop out of its socket. 😶

Does she suffer with any other diagnosed conditions? Any mental health things like anxiety? Any allergies?

Also has there been any significant change in your lives/diets etc between 2018 and 19? Are the longer episodes 2019?

What about gallstones? Children can get them too

My son, from the age of about 7 until around 12 had episode similar. His included vomiting though, it was acid reflux and bubbling tummy, just awful. There was such an acute episode once, that he was rushed into hospital with suspected burst appendix. He was on morphine! They wheeled him down for an ultrasound...and nothing! Just gas- but he was in real pain . He had an endoscopy and a stomach biopsy- absolutely nothing!! I was mortified when the specialist asked if he was anxious or worried about anything. It seems it was 'just him' and he gradually grew out of it. To this day, we don't know what triggered it or what it was. So worrying. You have my sympathy.

Abdominal migraine or functional abdominal pain syndrome are possibilities- what have the doctors you've consulted ruled out?

Has she had an endoscopy?

Answers to your questions:
*The pediatric gastroenterologist speculated my daughter gets abdominal migraines; she said there were no tests to determine this prognosis. Further, she sees the 3 triggers that happen simultaneously to cause an episode are: lack of sleep, too much sugar, and too much positive excitement. For example, after a birthday party, sleep over, grandparents visit, during vacation. This situation has proceeded only half the episodes.

The gastroenterologist said there were a wide range of symptoms a child could have. My daughter does not have the abdominal migraine symptoms we read on so many websites: nausea, vomit, pale skin, dark shadows under eyes, sensitivity to light and sound, & each migraine attack lasts between 1 hour and 3 days. For this reason, I posted to this forum to learn from other mums if maybe she was mis-diagnosed.

*The acupuncturist’s diagnosis was the vagus nerve was not functioning properly.

*Our daughter is growing and developing normally and able to engage in a full range of activities, is happy and content between episodes.
*Thank you for suggesting Mesenteric adenitis. I just looked into it; because she had an ultrasound during an episode I don’t think she has this as they would have seen swollen lymph nodes.
*Thank you for suggesting gallstones and Functional Abdominal Pain Syndrome. I just looked into both and they don’t match her symptoms.
*She does not have any food allergies. She does not suffer from stress or anxiety.
*There has been no significant change in her life or diet between 2018 and 19. The longer episodes happened in 2019.
*She has not had an endoscopy.

Your poor DD, it's horrible when you can't help them and noone seems to have the answers.
What medication if any have the doctor's given you to try ?

My daughter had reflux as a baby and was told when she is up and about more she will grow out of it.

When she was about 5 she was complaining of stomach pain and was off school quite a bit. I took her to see the GP. And was told it could be anxiety she hasn't got a dairy allergy and she will have grown out of her reflux.We took her back and they said there is nothing wrong her tummy seems fine and it's just anxiety so just to try and manage that.
This year her tummy pain was worse and it was everyday and there wasn't anything significant, we tried food changes etc as I do have IBS. But still nothing and still in pain.
Then out if the blue my daughter started being sick in the night only in the night and just the once , so wasn't a bug or anything it happened over 3 days where she was sick in the night so I took her to a different GP and he listened and said it's reflux and gave her some peptac, so she indeed does still have her reflux. So now she has this medicine after most of her meals and deffinatly before bed. I wonder if this could be what your daughter has.
I was told it wasn't stomach migraine as she didn't seem to be in enough pain

Have she had a faecal calprotectin test? I would push for that then ask about endoscopy/colonoscopy.
Gastroenterologist would call a child constipated if not going each day and type 4 on the stool chart - might be worth trying movicol (or equivalent) during the episodes.

I would have said DS didn't have anxiety. He was my most chilled child, a delight in every way- possibly overly mature and sensible. He had episodes of feeling ill, nausea, diarrhoea etc. It turned out to be migraine type illness. Basically repressed stress.

He got it when travelling, or when life was a bit dramatic. He still gets it when under pressure, but much more manageable as he recognises the symptoms and triggers and can help himself.

Don't dismiss stress, even if your child isn't stressed. They appear relaxed because their stomachs are doing the worrying for them.

has she had scopes for things like eosinophilic GI disease ?
is she hypermobile

Thank you for sharing your idea on reflux, I will look into it.

My daughter is not hypermobile. I just looked into the symptoms for eosinophilic GI disease and they don't match what she has. I appreciate the suggestion.
I will look into a faecal calprotectin test; thank you for the suggestion.
I would describe my DD as mature, emphatic, and worries about what other kids think about her. I will address potential repressed stress. Thank you for the idea.

Just reading your initial post made me think back to being a teenager - curled up on the floor with tummy pains, or laying on my tummy to take the aches away.
Have you thought about stress/anxiety, or stress induced IBS? I never had a diagnosis but I suffered through til finishing university. After the pressure of school and exams it just disappeared.

Long shot (and extremely unlikely) - hereditary angiodema?

Sore throat and achy body lack of energy are standing out to me here .
I would get her checked for crohns by endoscopy it's possible to have in her upper GIT without bowel related symptoms.Also C-reactive protein and ESR should be done first if not already.
Next I would get LFTs done to rule primary biliary. Cholangitis If they haven't been done already. if this is negative my next thing would be an immune deficiency rare but possible with symptoms you describe

Castro has ruled a lot out already hope you find some answers.
Just on the coeliac TTG is not always accurate have the tested her endomysial IGA ?
Also if she is going for an endoscopy I would request a biopsy .

Op I have no suggestions but I just want to say you are one of the politest posters I've seen for ages.

Histamine Intolerance (HIT)?

What tests forCoeliac did she have?

Are you sure she doesn't have a food intolerance? The tests the doctors have given are for allergies involving the immune system but that doesn't mean she is not intolerant. My DS is intolerant of dairy and gluten but skin prick tests for allergy have come up negative for both. People often use the word "allergy" to mean both true allergy and intolerance, they are actually different things. The only way to rule out intolerance is an exclusion diet.