WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Tuesday, April 9, 2013

April's looking Brighter

After a long month of flaring Abby is finally balancing back out. Now that the endless flares are near the end we are able to see some of the triggers. For whatever reason when she is the middle of a flare we are blind to the trigger, I suspect because at some level we panic worrying she ia slipping despite our dedication to project elimination, that worry that is lurking in the back of our minds that maybe this is truly out of our control consumes us when we see her in a flare. Then we have that light bulb moment and take charge again and ferret out the offending item. We keep trying various diuretics and we keep thinking Abby's body just hates meds LOL We think maybe we found more hidden corn and the new nephrologist pointed out that the ones she has tried are sulfa based- which may or may not be an issue but certainly worth considering based on her insane number of reactions. Abby's sister is sulfa antibiotic allergic and Abby reacts to preservatives so maybe? The New Nephrologist said that often those that are allergic to sulfa antibiotics are not allergic to the sulfa based diuretics and vice versa- just for that bit of information it made for a great visit. Abby had also started taking a vitamin D oil. She has been rubbing it on her skin religiously for months with no reactions, and since her D continues to lag we figured it was time to try it by mouth. After a week we noticed the flares last month had taken a turn for the worse. After consulting with my corn free group(guru's!) I found out the oil we used had lanolin- yep, Abby is allergic to wool. Go figure, right? For everything we try to add to help, more often then not it seems to backfire.

The new Nephrologist was terrific, and honest, and helpful. She "got" our hesitation to run to Drs over every little thing and was very supportive of the dietary changes. Abby's lab work indicated a terrific nutritional standing- Yippeee! Project elimination continues to help. Despite the proteins her function and labs show her kidneys are in good shape. Without formulas,vitamins, dairy,soy, gluten,chemicals and all the other junk that we assume as a population are best(fortified milk,rice,vitamins-bad for Abby!), her nutrition is better then ever. Without a good and CLEAN nutrition foundation Abby crashes faster and worse. So, Abby and I feel absolutely thrilled that chickpea tofu and coconuts(aka project elimination) has clearly made a difference.


The new nephrologist said Abby was the first she had seen with Mito- she said, they don't teach adult nephrologists about Mito. When she said that it was so clear to me the disconnect in care for Mito patients. She had quickly read a bit about it to try to be prepared and clearly she was under the impression that patients with Mito depletions don't make it to adulthood. There was no information about the many different types of depletions in the summary, or that a depletion can be genetic or secondary- there should be. At the same time, you have to wonder, why don't they teach Adult specialists about Mito? I mean clearly now for the past 10 at least or even as much as 20 years there have been plenty of adult onset patients. Our medical schools here in the states are generally also part of some of the biggest research hospitals. So if they are researching adult mito patients at the same institutions that are teaching Drs. why are they not teaching the future Drs about Mito? 1 in 2000 warrants a class or two you would think, right? Considering most pediatric mito patients don't die from Mito which means they are going to become adult Mito patients- makes you wonder doesn't it?

In a way though I am so grateful she had not seen Mito- because when she looked at Abby, she only saw a sick patient, not a Mito patient with no cure. Turns out there are plenty of "horses" vs "zebras" we could/should still rule out- at least if we finish ruling out stuff our hearts will rest easy that we have not overlooked anything.

We have a name of a Rheumatologist to try despite all the blood work thus far being mostly normal. There are oddball diseases that a Rheumy may have seen despite relatively normal labs. We have a name of a urologist so when Abby is ready to deal with that we know we have a good one to call.


I had to kind of chuckle this morning, for the first 15 years we fought and dragged and begged for them(drs) to help us figure out Abby. They find the depletion and that was it- they decided we had our diagnosis, and no need to look further. So what did we do after finally getting a diagnosis that kind of fit? Instead of the years of trying to find a diagnosis, we are now pushing to rule out the depletion as the primary issue. Realistically, Sara was preemie, we lost our second to hydrops,heart and liver issues at birth and then Abby- odds are genetically something is wrong but until we find a gene that absolutely declares "no hope" we keep looking. What if 10 years from now it turns out it was Mast, or something else that could be controlled? Could I possibly live with myself knowing we threw in the towel when my gut said not to? Nope. Admittedly, I am just used to the battle mode. 20 years of complicated babies,toddlers, children,teens- thus too many battles to count. That constant battle mode has shaped my views on the world. I have fought Drs, Public Schools, Gifted support, colleges- surely I must look for the fight like so many seem to thrive on the drama. Many days I wish that even for a few months I could be the type that just trusts the Drs, that just trusts the schools, that just goes with the flow- wouldn't my life be soooo much easier?

If my children don't justify "battle mode" I don't know what does.

April is looking better. !8, good nutrition, figured out a few more triggers. Despite the flares she did not lose as much ground as she normally does. Life is good for the Neumans.

I am finally accepting that I cannot ignore my gut just to make life easier- battle mode just suits me I guess.

Chickpea's and Coconuts is a better name then Project Elimination, don't you think?

Finally, I have dragged home a bunch of new and funky foods from my International Markets- should have a bumper crop of oddball foods being turned out from the kitchen, and if anything makes me happy, it is knowing that I can feed Abby and do it better then any Dr.


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