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.

Friday, February 7, 2014

What to Try Next...

We finally found Benadryl where the Compound Pharmacy was willing to use Baking Soda as a filler. Our insurance actually covered this out of state pharmacy.

And she reacted.

On one hand I now know absolutely that her body really hates the Benadryl as much as the fillers. On the other hand in the back of my head I kept hoping that her incessant reactions to medications was because of the fillers. She has no problem with the baking soda. She did not swallow the gel cap(mixed it with sugar and tossed the gel caps, those we know she reacts to plus she cannot swallow them). The first one had some reaction, but we convinced ourselves it was a reaction to something else, some food or a cold.. we gave it a day and tried again- bam! Clearly a delayed Abby reaction. Headache, bone and muscle pain, racing heart, GI upset, proteins up in her urine..By the second dose her body quickly recognized it as something it did not like..

How can one petite body react to so much?

Positive, we now have a pharmacy that can make a medicine without cellulose, or corn, or dairy, or soy, or whatever else they think is a good idea to mix into the medicines.

I suspect we will try a few more medicines made cleanly. Though, I am not particularly hopeful that her body is going to willingly accept any.

It is possible she is simply allergic to benadryl, there are plenty who are(surprising huh? Allergy to an allergy medicine, who would think!).. doesn't mean the zillion other reactions to various medicines over the years were issue with the actual medicine, still could have been the filler. But, not feeling at all hopeful that we will find anything she can take daily to settle her body down.

Abby see's her Immunologist this week, so fingers crossed he has plan C or plan D.. or is it plan E already?

Frustrating for today. I know we will figure out how to get around this too, and she has done very well for 2 years simply by eating the right foods, without chemicals. I cannot help but want that quick fix in a pill though! I get impatient as does Abby. Plus, I worry about should she ever have a life or death situation, I would like to have some sort of plan. Our monthly bills are cheaper then most though, no vitamins, no medicines, that is a positive. :-)

Overall she has been doing alright. Winters are just hard on her. No major setbacks and we are grateful. A new funky rash, more hives then usual, she lost lemons and yeast and a few other things. She has managed to hold on to salmon though, that is a major victory.

We pushed back her monthly dental appointment to give her body a little extra time. Her delayed reaction last month was rough.

Feeling a little stuck trying to figure out how to help her, but that will work itself out when it's ready.

Her body could make this a lot easier by tolerating something in the form of a pill though :-) Nope, always the hard way which is honestly the best way.


Kristy Williams said...

Hugs! It's so difficult to be reservedly hopeful that *this* will be a good fit. Hope Abby feels better and the next plan will get closer to what's needed.

Deborah Drake said...

I just found your site and I relate so much. I have EDS, MCAS and Mito. I feel it is all one thing and not 3 issues. EDS causes loose collagen where the mast cells reside, so they become unstable and release chemicals and as you said on one blogpage, the mast cell mediators affect the mitochondria.
I am 40 and have been struggling with this my whole life but the last few years have been especially bad. I started having seizures August 30, 2012. A year before that the mast cell issues were out of control but I didn't know what it was. I just knew I was sick every time I ate or got warm or got near chemicals in the air and from so many things. The allergist said I had no allergies. So it was not all fitting together.
Now it seems I have a type of MELAS that causes hypermobility (I'm a 7 of 9 on the Beighton Scale and was diagnosed with EDS type 3 in 2011).
The mast cells are definitely making the mito worse. And likely vice versa. I'm on a low histamine diet and down to about 20 foods and though I seem to be getting better, I'm really getting worse and avoiding more and more triggers.
I can't avoid many of them, like weather changes and stepping out into the sun.

I'm thankful I know these things and have done so much that I can keep a semblance of normality (at least in my imagination lol) but I know that many are dying every day with these illnesses because they don't know how to avoid the triggers. I'm so glad you are working so hard to figure it all out to keep the symptoms under control for Abby. Keep up the good work!

Diane said...

Thank you for posting!!! You know, I was frustrated for a long time because it seemed that no Dr. really took the "allergies/reactions" seriously- we finally found an Immunologist/Allergist that understood Mast and the systemic impacts. It was such a relief to not "feel nuts" for Abby. We are so with you on this, I strongly feel that for some patients with Mito, odds are that if they have Mast, Mito, POTs etc- they don't have a bunch of different diseases , they have just 1 disease causing all of the issues. Thanks for stopping by and I hope you are able to add in more foods. Abby says living her "new normal" to avoid triggers is totally worth it- anything to stay stable! :-)

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