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.

Saturday, April 27, 2013

Yes to May

Thankfully, Spring is nearing an end in Houston.

The tree pollen seems to get her the worst and whichever tree's were flaring her last month appear to be settling down finally.

We also figured out why(or at least part of the reason) she was reacting to the compound meds- Birch.

The compound pharmacy uses a cellulose from birch. We were starting to wonder if Abby actually could be allergic to everything!

The nephrologist Abby saw was brainstorming with us and mentioned that the vast majority of diuretics are sulfa based. She pointed out that most with sulfa allergies tolerate them fine, but some don't. Even more interesting some who are fine with sulfa react to it in diuretics.

She gave us a name of one of the few that are sulfa free and we were ready to go head to the compound pharmacy and give it a try.

That is until she reacted to the new toothpaste I bought her. Toothpaste is full of all sorts of allergens including plenty of corn. One brand called squigle is corn free so bought a tube for her to try. She reacted badly to it, I was shocked since so many with corn allergies use this brand safely. When it comes to reactions I always blame corn first then dairy then soy..

With the help of some of the Mom's on the corn allergy group we figured out that the cellulose they use in the toothpaste is from BIRCH!!!

Over the various allergy testing repeated over the years,she always has reacted to tree's. Cedar being the most significant, somewhere in the back of my mind I knew she had mild reactions to birch, but I just always associated birch allergies with airborne, not food.

Either her allergy to birch has become more significant since many products that are corn-free tend to use birch based substitutes or it has always been more of an issue then I had realized.

On a positive, I know to avoid birch based products when finding food and soaps for Abby, on a negative now another ingredient we have to eliminate.

I am kind of hoping that with Abby these strong reactions to the birch is due to "full bucket". Abby can often tolerate small, minute amounts of exposure if her overall exposure to her main allergens near to none. With Spring time and her crazy tree allergies in full flare her bucket is just too full and she is reacting to everything.

Now to see if her compound pharmacy can make yet one more substitution!

We are still seeing fairly constant improvements. Our definition of improvement includes not just gaining ground toward more activity, but better nutrition, better sleep, ease of bouncing back to baseline.

I am far from a patient person and this process is about patience. A lot of hurry up and wait going on around here.

When I think back to what we went through with her when she was a baby/toddler from her worst to the getting better point it took years.. the older you get the longer it takes to recover so I remind myself to hang in there, we are making progress.

Funny how now and then I catch a glimpse of her from the corner of my eye and whatever way she is sitting or standing takes me back to the very same postures during her improvements as a toddler.. it is almost like deja vu... In that way I can see a clear pattern and in her favor for sure.

She is moving around more. Her voice is stronger. Her nutrition scores are fab. Digestion is better then it has been in a couple years. Her hair is growing back in at a decent rate. More often then not good color and a sparkle in her eye vs that drawn fatigued and pained face. Any of the POTS issues we control well by the right temperature, the right amount of energy use, the right amount of fluids...blood sugars are steady.. etc.. we have a couple funky little new things brewing but figuring they are caused by the improvements vs getting worse.

After a car ride a couple weeks ago we realized she still has such a long road ahead. Just sitting in a different position then what she is used to at home she used a bunch of different muscles and it exhausted her.. on the other hand despite the exhaustion she is ready to go again.

It has been delightful to see her participating around the house more regularly. Now and then she can fold some laundry, or she does the dishes or other little chores she truly delights in being able to do again when she feels good. She was so miserable before and bed was where we found her more often then not, now she is in the thick of it around here and becoming an active manager.

Frail but getting stronger.

I have had a few days where I sure wished we had taken a different route. I wish we had trusted various Drs.- because when she is having a bad couple of days, boy do I suffer serious self doubt that we made the right choice. If we were doing what the Drs. recommend and she was getting sick- I would not carry the full burden of our choices. Abby remarkably doesn't have these doubts- she said she has absolute faith our choices have been the right ones. She said if she was faced with it all over again she would do the same. It makes it gobs easier that Abby is an active participant in her health.

So as May approaches we have another allergen to avoid, but by finding it we just eliminated another hurdle to getting her feeling herself again.

I know these allergies are insane with her, and I know without a doubt they are connected to her depletion and myopathy- just not how exactly. Over the last few months I have run into a few more families who have been shocked by their mito children's allergies- some have no family history and most report their specialist don't feel there is a connection. Yet, remove the allergens and it often was key in the stabilizing. So, for a sub population allergens are clearly part of the Mito picture..

Project elimination was the best medicine to date. We are hopeful,grateful and certainly understand Abby's body better and thus are learning quickly what works and what doesn't. April did not work! :-) Now with the airborne tree allergies settling we are back on track.

Fingers crossed May is as terrific as I think it will be!


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