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

33 replies

bobiddia · 01/01/2020 14:24

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.

OP posts:
Are your children’s vaccines up to date?
bobiddia · 03/01/2020 19:51

Thank you for saying that I am so polite. I really want to appreciate everyone's time. I am very grateful I found this site because I really wanted to hear from European mums because your medical system is different from mine. I'm American.

OP posts:
NewName73 · 03/01/2020 19:54

I would ask for an endoscopy to completely rule out Coeliac disease.

justenoughjim · 04/01/2020 09:36

I would also suggest an endoscopy for CD. Symptoms sound as though the fit. It's a hard disease to diagnose and often take years.

NewName73 · 04/01/2020 09:55

For context OP, my DS did not get diagnosed with coeliac disease until he was 17 ... after several years of episodic digestive problems and being dismissed by GPs. I asked for a referral to a gastroenterologist, but even he did not suspect it at first, he ordered the endoscopy because he had no idea what was causing the problems.

DS is small, I used to think it was due to his asthma but now I think it was due to not absorbing the nutrients from his food properly, and I kick myself every day for not being more assertive with the doctors sooner.

He is much healthier & happier since switching to a GF diet.

YeOldeTrout · 04/01/2020 10:08

Those symptoms don't sound severe.

bobiddia · 10/01/2020 04:47

Hi
I have researched everyone's suggestions. The one that seems the closest match is histamine intolerance. I'm going to have her stop eating foods that contain histamine and trigger histamine release and wait to see if she has another episode.
Thank you so much!

OP posts:
Igmum · 10/01/2020 05:06

A friend's DS had similar, terrible pain. Doctors baffled for some time - he was then diagnosed with an allergy to eggs, which might tie in with the link to parties (cake).

Good luck OP. Hope you find out what it is soon 💐💐

pollywobble · 10/01/2020 05:18

Uncommon but I have seen one child with intermittent abdominal pain that turned out be Addison's Disease crises but she was underweight , tired and rather sallow looking

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