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, August 13, 2013

If it looks like a Duck, and it Quacks like a Duck...

The blood work from the Allergist/Immunologist showed all sorts of little goodies.

A few immunological findings that might explain why every time she leaves the house she gets sick, and why she does so much better when safely isolated at home.

Some results hint at some answers, definitely starting to paint a picture.

"Multi system involvement" "unique" " 1 of a kind. "

Likely Mast involvement, but we are adding that in at this point, not really removing anything else yet. Eventually Abby will need to have a bladder scope and biopsy to confirm IC or determine what else is going on..at that point we can do some testing for Mast Cell issues.

Of course, my hope was that some oddball finding would pop up, we would give Abby the magic pill- and we would finally end our journey.

Nope. We however, are very pleased we are learning more about Abby, and this Dr. has seen it before, and we trust him.

On a positive, we still think this Dr. is brilliant. He get's Abby as well as her Mito Specialist in Atlanta or her Family Dr- impressive, since most aren't capable of handling Abby and her growing complexities. Too many times Specialists don't have enough skill to see the issues, or don't want to, or they do and they tend to over treat which we are not a fan of.. treatments can cause as much damage as no treatments. Any Dr. that isn't smart, passionate, and well educated, isn't capable of handling or even recognizing her "uniqueness".

One share, her vitamin D levels went from a 13 to a 28. Since her D has been lagging and dropping for years now this was a great and welcomed finding. Not going to cure her, and she hasn't felt any better, but heck, we at least finally "cured" something! I will gladly take it as a win.

The Spectracell testing had shown her in the normal levels, and despite Spectracell having a great reputation and now considered mainstream and covered by most insurances we all had our doubts when we saw it as normal- this last lab work really validated to all of us that Spectracell is a wonderful and reliable test.

For the last few months we have been slathering Abby in Rx D(corn free, but has lanolin) oil. Like a ton. Apparently, it is finally working! She could not tolerate it by mouth, so we all figured on the skin was better then nothing, and I am just beyond pleased that something we tried, WORKED!

For now we continue to avoid anything Abby reacts to. We have done it this long, we are just used to it at this point.

Next up may be trying IVIg.. might help with the immune issues, and other funky Abby special stuff. In the works. Has risks, and odds are she will react, the question is, how "bad" will the reaction be?

The ride was hard on her yesterday, more so because of the dental work this past Thursday. She actually was bouncing back from the dental appt better then the previous one but yesterday's trip wiped any reserves she had out. So her favorite soup and a wonderful sweet treat on the menu today.

Maybe next week I can try something, different or new, at worst the week after. When I am not cooking funky food, it gives me time to catch up on other stuff around here, though I admit, I prefer the kitchen to the dust bunnies!

We are all tired, but feeling like we aren't just spinning our wheels anymore. This is good, very good.


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