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.

Thursday, August 29, 2013

Quick update-

Some of the issues from the IVIg SubQ seem settled this morning. And others are worse. Her eyes are still itchy and crusty, which isn't part of her normal allergy response. Her ears are in terrible pain, and she said it feels exactly like when she got ear infections all the time when she was little. One is leaky, but I cannot tell if it is just hot so oozed wax, or burst. Either inflammation from an allergic reaction or turned into an infection from the reaction. She has an Appt tomorrow so we will know then.

One leg feels way better, the other is still tight and very tender- not hot or red, so we are not worrying yet.

The stomach is settling down nicely. We are being very cautious for now about what she eats.

We are still suspicious that the kidneys aren't quite done with their drama performance yet- by this weekend if they have settled I will feel better.

She is so so tired and hurts but definitely improved.

Yesterday I was so burdened with guilt. As Mom's we do everything to protect our children and that hasn't changed from the time she was born till now at 18. I "know" this was the right choice, and I know that just because she reacted so badly, it doesn't mean it won't work.. but that knee jerk reaction of blaming myself for taking the risk in the first place caught me off guard.

On a positive what we got out of this experiment? That patients with Mast disease are far more likely to have reactions like Abby then those patients with Mito.

Perhaps the proof we needed that much of what has slowed Abby down so badly this last 4 years is more about Mast Cells then Mitochondria.

Something to smile about, for sure. Well maybe not smile, but a worthy gain out of the misery at least.


Anonymous said...

got to thinking....you might have her doc check her blood calcium levels. If in the midst of this mess...her parathyroid might have gone a bit nuts.
pretty simple rule out...and maybe another piece for you to look at???

Diane said...

Good Idea! He is pretty careful with her at this point, I will read the link and explain our concern, I know she is probably stronger then I think, but we have seen the weirdest and strangest things go wrong with Abby, we are just cautious at this point. TY!

Anonymous said...


Ignore most of the stuff...but the cheese sounds sooooooooooooo good and I thought maybe it would be a real treat for Abbie and you all. I think we will try this as soon as I get caught up with my pickles!!! lol

As to guilt....I do believe that that is a built in mechanism for moms!!! I think it is our first response!!! Just cuz we are the Mom!!! big smile Jesus bless you all!

Kristy Williams said...

Hoping the weekend brings relief, recovery and healing!

Diane said...

Ty guys! Seems like each evening she is a touch better. Hoping she feels back to normal sooner then later.

Also ty for the great link! Nothing makes us happier then a new recipe to tinker with ! :-)

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