My middle child has just turned 4. She's had.gastro issues her whole life. Explosive diapers, we are talking head to toe every time. They got worse, she became horrifically constipated, so we cut out gluten as her sis was gluten intolerant and it made a difference, but her tummy was not 100%. She's always had long term and short term bouts of hoarseness, we've always joked she sounds more like a boy than her boy cousin!
She has only slept all night twice in her whole life, she wakes up multiple times screaming acting like when my eldest had colic, the whole back arching and curling up in a ball act.
We found out by accident she was severely anemic when they took blood after she developed cellulitis after her 18 month shots. Her iron was 3 range 4-25. Ped gave her iron supplements, took3 months to get to 8 a year to get to where he wanted (12). But her iron dropped to 8 a few months later.
She hardly eats, she's slowed down in growth. Complains of stomach aches, on the left side, below belly button, says sometimes it hurts to swallow. Whe she's really bad she sores so loud. She also complains of joint pain and gets rashes all the time.
We have a great ped so far she's seen
OT, no developmental issues, says it's a medical issue
GI, original GI ( called Guttman lol) ordered upper GI with biopsies
- celiac negative
-EoE negative
Only issue was redness in duodenum which they could give no explanation for
Reflux meds, ppi, no help made her scream day and night
ENT said hoarseness not her tonsils, gastro related.
Tested for lupus, checked for hpylori giardis etc negative,no blood bus pus or ova
CF testing negative, no inflammation or infection
Rheumy fellow wanted IBD team to have a crack at her, her boss walked in and nixed the idea.
So our diagnoses are
Sore throat - she needs to learn to whisper
Tummy - she's constipates, was on miralax, but now we've had to stop it as she now has uncontrollable diahrea with oil and foam. We gave for a week in case she was just backed up, but it made her pass pure water so def not! Pain is apparently Functional abdominal pain, everything else gastro related repeated tummy bugs, I have 2 other kids, and my hubby is on remicade for his crohns, no one else is sick
Rheumy Sid she's anemic because she doesn't eat enough, if I feed her more she won't be anemic and she'll grow more, would you be able to eat feeling so lousy?
Rashes repeated viral rashes.
My hubby wants me to take her back to the ped, but she's had the million dollar work up and we've been discreetly advised our files are flagged, we can't take her back to the hospital, but probably her ped he's awesome. He said family services won't get involved, but docs at hospital insist she 100%. Healthy and this is normal. As it's spring break my teacher hubby has time off and has seen first hand the disabling nature of her pain, the diahrea, the constant crying and he wants it fixed. But we have no avenues left. We are in British Columbia canada, so covered by provincial medical, can't afford to go private.
We do t know what to do. Take her to hospital next time she screaming and risk A) a repeat of our last visit for bad pain and be hiven tylenol and asked why we are even there or B) social services visitin, they take kids first, ask questions later
Or just leave her and pretend docs are right
She has only slept all night twice in her whole life, she wakes up multiple times screaming acting like when my eldest had colic, the whole back arching and curling up in a ball act.
We found out by accident she was severely anemic when they took blood after she developed cellulitis after her 18 month shots. Her iron was 3 range 4-25. Ped gave her iron supplements, took3 months to get to 8 a year to get to where he wanted (12). But her iron dropped to 8 a few months later.
She hardly eats, she's slowed down in growth. Complains of stomach aches, on the left side, below belly button, says sometimes it hurts to swallow. Whe she's really bad she sores so loud. She also complains of joint pain and gets rashes all the time.
We have a great ped so far she's seen
OT, no developmental issues, says it's a medical issue
GI, original GI ( called Guttman lol) ordered upper GI with biopsies
- celiac negative
-EoE negative
Only issue was redness in duodenum which they could give no explanation for
Reflux meds, ppi, no help made her scream day and night
ENT said hoarseness not her tonsils, gastro related.
Tested for lupus, checked for hpylori giardis etc negative,no blood bus pus or ova
CF testing negative, no inflammation or infection
Rheumy fellow wanted IBD team to have a crack at her, her boss walked in and nixed the idea.
So our diagnoses are
Sore throat - she needs to learn to whisper
Tummy - she's constipates, was on miralax, but now we've had to stop it as she now has uncontrollable diahrea with oil and foam. We gave for a week in case she was just backed up, but it made her pass pure water so def not! Pain is apparently Functional abdominal pain, everything else gastro related repeated tummy bugs, I have 2 other kids, and my hubby is on remicade for his crohns, no one else is sick
Rheumy Sid she's anemic because she doesn't eat enough, if I feed her more she won't be anemic and she'll grow more, would you be able to eat feeling so lousy?
Rashes repeated viral rashes.
My hubby wants me to take her back to the ped, but she's had the million dollar work up and we've been discreetly advised our files are flagged, we can't take her back to the hospital, but probably her ped he's awesome. He said family services won't get involved, but docs at hospital insist she 100%. Healthy and this is normal. As it's spring break my teacher hubby has time off and has seen first hand the disabling nature of her pain, the diahrea, the constant crying and he wants it fixed. But we have no avenues left. We are in British Columbia canada, so covered by provincial medical, can't afford to go private.
We do t know what to do. Take her to hospital next time she screaming and risk A) a repeat of our last visit for bad pain and be hiven tylenol and asked why we are even there or B) social services visitin, they take kids first, ask questions later
Or just leave her and pretend docs are right
