Hi
Thank you for the replies.
Firstly apologies this is a long post but in case it helps.
An update - we struggled to be heard that ear, nose or throat infection would start off months in the winter of sore/queasy stomachs, struggling with greasy food, milk, pasta (gluten or gluten free) etc then in spring would get better. She would also get headaches, sore throat and sore ear. But didn’t have stereotypical tonsillitis symptoms.
The last few years it got worse and she would get progressively iller over a number of weeks then eventually would get a spot on tonsil and antibiotics which helped but didn’t clear 100%. After seeing lots of doctors we eventually took her to a private GP who advised thought mesenteric adonitis and that penicillin doesn’t work on everyone fully so prescribed Azithromycin. It cleared her up fully within 5-7 days, just one pill for three days. Her sore stomaches stopped too.
He advised that research suggested going in earlier & stronger with antibiotics for mesenteric adonitis to stop it becoming chronic for months. We have struggled through local surgery but have got Azithromycin privately when she has got queasy stomach, sore throat, head etc and it has worked
I have been careful as don’t want to just give antibiotics if a cold. So in September the usual happened, I waited 2 weeks of her getting worse (queasy tummy, headaches, sore throat, sore ear) to check not a virus before took to surgery but they wouldn’t give anything as no spots on tonsils. I waited another week & took her to the private GP and within 5-7 weeks of taking Azithromycin she was better again
ENT doctor last year has also finally agreed and said that if ongoing infection then glands to side of stomach can get inflammed and as as next to intestine this can impact digestion. He also said when looked at her tonsils she had evidence of chronic tonsilitis (a previous ENT doctor was dismissive and said “they aren’t prize winning”). We think perhaps infection starts behind her tonsils which is why no evidence for long periods of time. The low neutrophils/white blood count could indicate that fighting bacterial infection over a long period of time. A few months after her antibiotics last year her count was higher.
The paediatrician having ruled out gluten intolerance, stomach migraines and a lot of other things in October said mesenteric adonitis is recognised in other countries but not here so he was going to write a letter to surgery to advise to give Azithromycin as it obviously works for her but he had to word the letter carefully as the NHS didn’t recognise it as a chronic condition. . We have had it twice since then (December and a couple of weeks ago) and both times it has cleared her (she did have spots on tonsils earlier this time).
I also can tell something going on as gets little white spots to sides of nose/on nose as well and these have cleared up too which think can get from gut bacteria
We are seeing ENT again in a month and have got everything crossed they listen and we can have her tonsils removed rather than relying on antibiotics all the time. I had mine out at 18 years old and best thing that happened to me.
For food - nutritionalist suggested resistant starch could be why struggles as harder to break down and this makes sense. She suggested fresh pasta which definitely has been better. However, now that the antibiotics have cleared things up sooner so she hasn’t got the sore glands all winter then she has been able to keep to eating most things.
I hope this helps others as it has take 6-7 years of battling and advising the same story (that ear, nose or throat infection starts months of sore/queasy stomaches and fine again in spring) every year to finally get to this point. Our worst year she became a shadow of herself as so ill but didn’t present with temperature, didn’t see spots on tonsils for 4 weeks as had at doctor weekly, she had sore head and ears but no inflammation.
x