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 27, 2013

Mast plus Mito- Same Symptoms.

At this point we strongly suspect Mast Cell Activation with Abby. Diagnostics for Mast are as complex as for Mito, and it comes down to a process of elimination and what works to reduce symptoms. There are some laboratory findings(NOT TRYPTASE, that is outdated and not accurate)and via biopsy in various parts of the body there can be evidence as well.( When Abby is ready to deal with her IC and needs a bladder biopsy, they can test then, the bladder is a great place for an accurate biopsy).

What gets me is how SIMILAR many of the symptoms of Mast disease can be to Mito. Symptoms in common include:

GI involvement
Kidney disease
nutritional concerns
Bladder involvement
Seizures(not as common in Mast, but still a symptom)
Aches and pain.
Immunological issues

So, how the heck do you tease it apart? Very carefully.

It was a little easier for us. Two things have been constant in Abby's life, Myopathy/hypotonia and Allergies. A little more complex then that.. but still..

My Gut has said this could not all be related to the Mitochondrial Depletion she was sick, but not dying and after reading every blog I could google on others with onset from birth, they were far sicker then Abby. I am so glad I trusted my instincts.

There are treatments that are more effective in the treatment of Mast then compared to Mito. The quality of Abby's life might be improved considerably. No promises but far more hopeful then Mito. Like Mito, there is no cure, but there is more hope. Unfortunately, like Mito there are HUGE variables in Mast Cell disease, some are very very sick. Bedridden, so reactive they cannot leave the house without risking an anaphylactic reaction. Some have years of remission where they feel much better. Some have a more mild and steady process. Some are easily treated with meds, and others are not responsive to medications.

But, though I kept hoping we could erase the Mito from her record, we cannot. A depletion is a depletion is a depletion. Though I am closer to proving it a secondary then a primary, not there yet, but getting there. At the same time, I cannot explain the myopathy, poor fetal movement, hypotonia, etc. I kind of see Abby as just unique. Maybe a combo of different disorders.. but, to have one that can be treated potentially and allow her to feel better? Awesome.

After the lengthy and painful journey to find out what was wrong in the first place to find the Mito, we had really had it with Drs, Specialists, not sure how most Mito Patients aren't violently ill or dead just from the process! Those endless Dr. appointments took more from Abby's health then a bad bout of pneumonia, I swear those appointment caused more of a crash then anything else in her life. I am so grateful that there are practices like the Virtual Practice where you don't have to leave the house, it protects tired and sick Mitochondria and makes the appointment far more beneficial then damaging. I think ALL Drs. involved in Mito care should provide virtual care, easier for them and healthier for the patients, just saying! When we started Project Elimination I had found some support groups on Mast Cell disorders and I really thought WOW! These folks sound just like Abby! Yet, we hesitated to move forward to find out for sure if Mast was a part of Abby's complex health. I hesitated because all our hopes were tied up in the possibility it was Mast. We hesitated because Abby was exhausted and terribly sick from the insane amount of Drs. appointments it took to diagnosis the depletion. We hesitated because when a new dr see's a "Mito Depletion" on a patients record? They blame the depletion, instead of looking further. We ran into a lot of resistance with Drs- I think having a depletion on your medical record is like having leprosy- no one wants to touch you!

After a year of project elimination and finding it really resolved many of the symptoms we thought were dysautonomia, we were ready. When Abby's tooth enamel began to literally fall off, and I found out this happens to quite a few Mast patients? That really got me motivated.

Like Mito, trying to find a Dr. that has any training in Mast Cell disorders is nearly impossible, honestly, it is HARDER, there are fewer Mast Cell Specialists then Mito Specialists. Like Mito, there are many different types of Mast Cell disease.

We found an Allergist/Immunologist in Austin that other Mast Cell Patients use for their Dr. (Visit meandmymastcells.com for a listing of Mast Specialists in the Country.)

I gotta tell you, we were terrified, scared, hopeful that when Abby saw him, he would or would not see what we saw, what many in the Mast Cell Community saw in Abby. I am running out of stones to flip to find anything but Mito to blame.. if it wasn't Mast? That would force us to look deeper at that maybe it was just a Mito depletion, and we have fought so hard to not accept that diagnosis.

To our amazement,joy, and greatest hope, he SAW IT!!! He saw what has frustrated us. He listened. What we really felt was hopeful was that though he has a strong background in Mast Cell disorders, he is primarily an Allergist and Immunologist. We felt even if he did not see Mast he could help us navigate all of Abby's funky issues with food, that he could in a way help validate our Project Elimination.

We are still reeling from this part of her journey. We are so incredibly hopeful. Abby and I are trying so hard not to place too much hope on the shoulders of one Dr, but honestly, just that he had a clue, that he had seen what Abby was suffering from in other patients well that is enough. Even if he rules out Mast down the road, it doesn't matter, he agreed to help us flip stones, so we could finally rule out our suspicions that we were missing something.

Enough data has come back from labs and clinical assessment that it might be Mast, that there is some funky immunological findings, that we have hope.

Without the kind and supportive Mast community, without the kind and supportive EDS community(who often have mast and POTS involvement) we would not be here, full of hope, full of relief.

So, the oars are back in the water, and we are rowing for the shore with new energy and hope.

If your gut says you are missing something? You probably are. 18 years and we are still finding new data on Abby.

On one of my support groups there are many like Abby. Mast plus Mito. EDS plus Mito. Mito plus EDS plus Mast.(EoE,FPIES and other feeding issues complicated by Mast,or Mito or unknown) Allergies plus Mito, and more. These families are struggling like us and they like us support the move forward to not accept the "no cure" so just focus on quality of life crap- they are fighters! They want answers even if it makes life harder, if you have hope? You fight.

There is a geneticist in Canada who is possibly starting research on the population of patients with EDS plus Mast plus POTs, the Specialists are seeing what we are seeing as the families,caregivers and patients. There is hope- keep rowing!


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