Abby's kidney issues were what sent us down the Mitochondrial Disease Diagnostic Path.
The kidney biopsy looked like Minimal Change Disease but more so, and the clinical findings were more in line with Secondary FSGS. Lately I have been reading that for some patients MCD can turn into FSGS, so it would make sense to find conflicted findings.
In the world of pediatric nephrology many families are told again and again- Allergies cannot cause kidney disease.
They CAN cause kidney disease.
I have found article after article after article that Allergies(food/environmental) are a proven cause of Secondary Minimal Change Disease. All you have to do is type in "Allergies and Secondary Minimal Change Disease" tons of research dating well back into the 80's. Proven again and again and again. So why are we told it is impossible?
Which means, if your kidney disease was caused by Allergies if you eliminate the Allergens from your environment you can stop the progression of further disease.
Not common, but since Secondary FSGS due to Mito is near impossible? Far more plausible that Abby has secondary MCD.
Abby clearly has neurological symptoms. kyphosis/scoliosis(neurological),poor muscle tone, the depletion, and myopathy findings on biopsy, so I understand the train of thought.
The frustration is that when most Specialists are given the option of blaming Allergies vs Neurological? They down play allergies again and again. In general, most Specialists we have seen do not understand that Allergies aren't just hay fever and anaphylaxis. How many patients are passed around to every Specialty before finally getting referred to an Allergist(FYI, not just any allergist since many of them have no understanding of the systemic impacts either,you need to find a Specialized allergist/immunologist that gets complex allergies)?
It is possible that the Depletion is secondary to the Mast/Allergies. It is very possible that her kidney disease is due to her Allergies. Since she was born with the myopathy/poor tone I cannot blame that on allergies, but it really makes me wonder.
Abby's symptoms for Mast and Allergy look more autoimmune. They look more viral. They mimic Mitochondrial Disease symptoms. At this point I am sure the fatigue and some other issues are now due to the depletion, but I cannot help but wonder- had we intervened sooner, could we have prevented much of the damage we see today? Had we lived the extremely clean diet we do now, could we have prevented the Mitochondrial Depletion entirely?
I know I shouldn't cry over split milk. Yet, as I meet more members on various Mast, and Allergy groups I see patients again and again that are far sicker then many children diagnosed with Mito that I follow.. It leaves me puzzled. I need to make sense of it. I cannot help but wonder exactly how many children could be healthy instead of sick if we understood Allergy/Immunology better?
The rate of food allergies is skyrocketing. We now know that what we eat can affect our Mitochondria. We now eat massive amounts of chemicals in our western diet. We are exposed to fungicides,pesticides(remember, Roundup is a mito toxin, and it is in everything you eat since hidden corn is in everything you eat,for example; Elecare elemental formula is 55 percent corn syrup solids),dyes,flavorings(many of which are banned in other countries) we are raising/growing our foods in depleted soils and our food doesn't have the same amount of nutrition it used to have..our meat is fed tons of antibiotics and hormones to make them unnaturally fat quickly for the best profits. We are exposed to motrin,Tylenol, antibiotics, immunizations from the minute we are born. (When I was kid we only had aspirin which was only used in an emergency since it is dangerous in children.) We did not get antibiotics, despite being sick constantly I likely did not have antibiotics at all as a child. I can actually remember my brother getting Strep and it was a HUGE deal because it was the first time I remember someone in my home taking antibiotics. Abby and Sara had more antibiotics then I can count just in their first 5 years. We did not get the immunizations they do now. We got very few.
I am curious to understand more about how our Mitochondria and Mast Cells and Immune systems interact.
Could we be preventing serious diseases in some children simply by focusing on diet? Simply by acknowledging that Allergies can cause severe systemic disease?
IF we had continued on an allergen free diet throughout Abby's childhood and puberty(she had "outgrown" her allergies supposedly)could we have prevented the depletion and kidney disease?
Yes, I think so.
She still would have had the myopathy, but that was a cake walk and easy to manage. She would never be "healthy" but she sure could have been "healthier."
The big question is now,
Can we "heal" the depletion? If we remove all the insults and calm her immune system will her mitochondria increase again? IF we control the allergies/mast/immunology can we protect her kidneys?
I think anything is possible. We are certainly going to give it a try!
We know there is more to it then that with Abby. My gut tells me there is something unique going on with Abby that makes her so crazy sensitive. I know it is not that simple. Realistically, the damage probably cannot be undone at this point. We can hopefully prevent anymore though.
Cure in our Cupboard? Probably not.
Body damaging chemicals in our Cupboards? Probably so.