https://labtestsonline.org/conditions/lactose-intolerance#
"Lactose tolerance tests, including:
Hydrogen breath test – currently, this is the most reliable test used to diagnose lactose intolerance. Breath samples are taken before and at timed intervals after a patient drinks a fluid containing a standard amount of lactose. With lactose intolerance, undigested lactose is broken down by bacteria in the large intestine, producing excess hydrogen gas. The hydrogen moves to the circulation and is eventually exhaled by the lungs. Increasing levels of hydrogen in the breath samples over time strongly indicates lactose intolerance."
[Though if it's positive, that doesn't necessarily mean something. But if it's negative, that should eliminate lactose intolerance being present.]
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Is it possible that she was getting reinfected with the Dientamoeba, maybe at a daycare or by a pet or some other animal(s)?
Hi, Nells. If there is no family history of immune system problems then my guess is that the focus should go squarely on the amoeba.
In this study, almost half of infected patients have symptoms:
https://www.ncbi.nlm.nih.gov/pubmed/30328410
"Clinical and Epidemiological Characteristics of Patients with Dientamoeba fragilis Infection."
There seems to be a long history of medical papers saying something like "we need to wake up to the harm caused by this parasite".
You might also now that there are often coinfections (bacteria or other parasites) that can cause problems, too. Dientamoeba Fragilis can even cause lactose intolerance by interfering with lactose absorption. However, from the symptoms, I'd guess that the problem is more likely to be sensitivity to dairy proteins -- because of 'leaky gut' from the amoeba, which is very different. But you've said that she was dairy free for a while anyway, so maybe dairy is not a factor.
Why haven't they done the breath test for lactose intolerance?
"About 730pm last night while watching TV the pain started again and this time it was sharp in the centre of my chest and was quite uncomfortable. It feels like each time I feel this pain it's getting sharper every time."
Try, if possible, to determine if that pain can be in your esophagus. Or alternatively, if it hurts more when inhaling forcibly.
"gallbladder"
That might be from immune driven 'acalculous cholecystitis' which might not have been picked up on ultrasound, if in early stage. Or was a CT with contrast done for that?
"Although it is unusual for acalculous cholecystitis to occur in patients with a normal gallbladder, on US and cholescintigraphy examinations, the gallbladder may be found to be normal early in the course of the disease."
https://emedicine.medscape.com/article/365553-overview
Throughout this, Nells, we have to keep in mind that it's difficult to separate symptoms due to a pathogen, from symptoms due to only the immune chemicals (like the flu, in which it's all from immune chemicals). Immune reactions certainly produce tiredness. Again, that's why the CBC is important now, unfortunately. Also, which particular white cells go high is important. Or, if you have any from the past during episodes, that might suffice.
Which antibiotic(s) has she had and since what age?
What did you mean that she had trouble walking?
Well, by having the same thing I mean that you share genetics which might lead to a predisposition to having unusual immune systems. You also can be subject to the same environmental factors, such as the parasite. You also can be exposed to the same triggers such as food or pets or pollens & molds, and on and on. Meanwhile, your husband doesn't have that genetic susceptibility nor the symptoms - so we can probably rule out any strong chemical toxin (such as mercury) or a pathogen (like the amoeba) that could be responsible all by itself.
But all that won't necessarily mean that you and your daughter have all the same symptoms. That diversity is true in people with CFS, or with eosinophilic or mast cell disorders, even in lupus and other auto immune conditions.
By going back and forth, maybe we can narrow this down somewhat. At least a goal can be to reduce her symptoms.
I'd mentioned CFS mainly in regard to you and your other posts which I'd glanced at. It's a common list for CFS: female, exerciser, British. Even the apnea is associated. (Have you tried sleeping only on your side?) Did you start out with a bad cold? Extreme stress?
Has she ever had an EEG that showed seizures? Or was she just diagnosed by symptoms?
Well, there are lots of things to say. Most overriding is that both you and your daughter probably have the same thing. This very much looks immune related. That also fits with resulting tiredness and any so-called "brain fog".
The principle of Occam's Razor comes into play: look first for a common cause for everything.
It's important to get a CBC done now in order to try and distinguish between an infection and an immune-only condition.
Are you British? You must have heard of CFS/ME, which is one example of a mystery immune condition.
You're almost certainly correct that it's your lungs, not your heart. Probably leukotrienes. Possibly the esophagus is also involved.
Was a parasite positively identified in your little daughter? What is the name of it?
Consider this carefully:
"Preventing misdiagnosis of epilepsy"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2065943/
"Hindley et al found that epilepsy was the diagnosis in only 23% of the children [originally thought to have epilepsy]."
and
"Uldall et al found that 39% of those referred to the Danish Epilepsy Centre did not have epilepsy."
Also, "Oct 19, 2006 ... Each year more than 90 000 people in England and Wales are wrongly given a diagnosis of epilepsy, a new study has estimated." in "Epilepsy is misdiagnosed in 90 000 people a year in England and Wales" https://www.bmj.com/content/333/7573/824.2
"she was allergic to something and to 'go figure it out'"
Unfortunately that is how it can be, and is more difficult if the problem is a component in foods, such as salicylates or oxalates.
There is also "leaky gut" which can make a person seem to be sensitive to almost any food.
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That's for starters, Nells. It's not going to be easy. Step one, I think, would be to try to determine if there is some common environmental "trigger" for both you and your daughter that sets off immune activation. (Sorry to be curt in all this, but there is so much to try to get in.)
Have you been tested for the same parasite?
Hi, I don't see any reason to think it's lymphoma. That's especially so since the first node (behind the ear) went down all by itself. Lymphoma wouldn't behave that way.
One big thing to keep in mind whenever you research this is that children's immune systems are different than an adults -- specifically being more likely to enlarge more frequently, and sometimes also even getting bigger than seems normal (though pea sized was not very big). You'd think of mesenteric adenitis from cancer being more in older adults.
So what we have would be infection or else inflammation without an infection. Having her symptoms from a virus is not unusual in children. There's probably no reason to worry unless 3 weeks or so go by and the pain/tenderness is still there. (I'm assuming that pain/tenderness is present currently, and that's what caused the ultrasound to be done.)
However, this stands out: "she gets a virus every 4-6 weeks without fail" . There are such things as periodic syndromes, which generally show up in childhood years. Most involve some immune system dysfunction: inflammation without infection. Some are called cyclic instead of periodic. Maybe that's what your intuition is picking up on.
It's a good idea to start keeping a log about when a seeming virus shows up and how long it lasts. That might give a clue as to zeroing in on which specific syndrome might be responsible - if indeed it's not really just from an ordinary virus.
The ultrasound would likely have ruled out appendicitis. You'll want to be wary in future of any epilepsy meds causing adenitis - especially if she happens to have an over reactive immune system... and having close relatives with odd immune conditions can be a tipoff to that.
Lactose intolerance seems unlikely to be cyclic, unless that's a known thing in children that I'm not aware of. However, a food *sensitivity* to dairy might be sporadic.
Are her current CBC tests showing as normal?