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, July 23, 2013

Well, maybe it is Mast.

Abby had an appointment with an Allergist who has a good grasp on Mast Cell Disorders.

At this point we just don't get excited that we may find the Dr. that can handle all Abby's funky symptoms. Or we try not to..

Over the last couple weeks we have all gone back and forth on what we hoped to get out of this appointment. For what an appointment takes from Abby, it has to be worth it.

It was so worth it.

For the last year or two we have followed the Mast Cell Community. Talk about some well informed and helpful patients. In so many ways most of the issues that simply don't fit the Mito picture with Abby, "fit" in the Mast Community. Like Mito, Mast is very poorly understood. Also like Mito there are very few Specialists- only 2 in Texas, one is only for the most severe patients that have become cancerous. The one we saw works with the rest of the population and all of it's shades of grey.

More then Mast, this specialist was extremely well rounded in all the area's that have left questions when it comes to Abby.

Over the past couple years I have run into more and more patients who have a Mast cell disorder and Mito or Mast and EDS or and all three. There is research, though in it's infancy, that shows the impact from Mast Cells on Mitochondria.

This Dr. is willing to see if it is Mast for Abby. Diagnosis is some lab based and some response to medication based. At least for the mast cell activation syndromes.. Even if she doesn't have a Mast issue, and this might be just crazy wicked allergies- he is certain he can get her to the point she can take meds when they are necessary, and hopefully decrease reactions to food.

The weird issues with enamel, purple toenails/fingers for days ,toenails dying, hair loss, kidneys, - he immediately understood how they are an odd combo of symptoms,but potentially important clues to help figure Abby out better.

What we really appreciated is that he "got" the depletion, he "got" the potential Mast related issues, and " he "saw" what doesn't fit, and not only wants to know what caused it, but might be able to help Abby control some of the symptoms. He is a "see the big picture" Dr. Not just kidneys, not just Mito, not just orthopedics.. Besides our family Dr,he saw why we were pushing, why our "gut" says something else is happening that has been missed.

Though he gave us hope we can calm her body, he also made it clear not to expect a cure- we are okay with that... On the drive home we dreamed of taking Abby to even a dr. appointment without her stuck in bed for weeks to recover, or take her shopping for an hour now and then for the simple pleasure.. these small things for so many would make the world open up for Abby. These would be huge gifts for Abby.

Even though Abby and I are tired of flipping stones, I have to thank all my Mast Cell family friends for pushing me to take Abby to someone who understood, maybe life will get a little easier for Abby because all of you provided us with encouragement to keep searching, to trust our gut.

Allergies or reactions? Either and I think Abby has a Dr. who will help control some of it.

After 18 years of us chasing our tail with Abby, after so many bad appointments, or appointments where the Dr. had not seen anyone like Abby, or did not have the experience to to help... we feel hopeful that our efforts will help Abby control a few symptoms-

Abby is done. Wiped out beyond belief. She still had not recovered from the dental appointment and she was beyond puny last night. Was the appointment worth it? Abby said it most definitely was..


Laura said...

Hope Abby feels better soon. Such a relief when a doctor wants to help.

Anonymous said...

You might ask them to test her adrenals...sounds as if that is wearing, too. If they could find a prep she could take...that might help her a lot. At least it has with my kids. Adrenals and thyroid are the master glands and if they are stressed too much...then other things happen.

Jesus bless you all and help you to find your answers, soon. Amen!!!

Anonymous said...

Fingers crossed for you both. Hoping things are going in a good direction.

Diane said...

Jo I was just thinking of you! Reading through all the genetics etc- I found some interesting stuff on other disorders that are like EDS but are classified differently.. I will try to remember to dig up the links and send them to you!

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