Thursday, January 29, 2015

Lessons Learned

We made it through our initial three months on the Auto Immune Protocol diet and then hit the holidays which threw us for a few loops.  We are now on the upswing again and have made a few discoveries along the way.  

Jack, we've learned, is sensitive to nightshades.  I had to be told what those were when we first started this journey.  They are plants that produce an alkaloid compound called solanine. The most common of them are: Tomatoes, potatoes, peppers and eggplant.  I thought avoiding gluten and dairy was rough, but those are a walk in the park compared to nightshades.  Anything labeled with "spices" as an ingredient has to be avoided.  It's rough, but it's worth it.

We traveled over Christmas break and were unable to control most of our meals.  Jack's eczema was awful - back to where he had been before we made any changes. We hadn't noticed how much more pleasant he had become until he was back on the nightshades.  He was grumpy, sensitive to touch and of course, very broken out.   We've been home a few weeks now and he's healing quickly.  

Slowly healing from the inside out.
January 2015 - Down a familiar path - Alopecia isn't fun.
Hair loss from vacation.  When we returned to our strict diet
it began to grow in.  But it always comes back without pigment
and takes a while to show color.

Mak also did not fair well over vacation.  The rest and relaxation did wonders for his adrenals and complextion, but his hair fell out in clumps - to the point where he wanted to shave his head again. We've been learning A LOT about his conditions and pieces of the puzzle are beginning to fall into place and make sense.   He's had Alopecia for years, but it was mostly inactive.  Then he started to have issues with his adrenals and everything went haywire.

Here's the best we can understand.
Event # 1 - January 2012, a broken arm that needed surgery.  With the hindsight we now have we know that anesthesia isn't his friend, and doesn't leave his body easily.  He seemed to recover, but never told us he was always tired.  His personality is to push things to the limit so he did.
January 2012
Event # 2 - Not actually an event, just life.  Working hard at the green house, pushing himself in a P.E. class and being a boy who wanted some muscles, he worked out a lot.  I began to find him sleeping in random places, often.  He started confessing he was tired, and we started to be concerned. We took him to have blood work and everything came back normal.
Event # 3 - February 2014.  A Snowboarding accident that had him in for another round of surgery. This is when things started to really spiral out of control.  The fatigue worsened, he was sick at least twice a month for the rest of the school year. In bed, unable to function for 3-4 days kind of sick.  In the summer he tried to work but struggled to even get out of bed.
We began to see doctors - making numerous trips to Cleveland Clinic.  Since his hair was falling out to the point of needing to be shaved we started with a few trips to the dermatologists.  One of them recommended doing some blood work and noted his iron was low.  This sent us on another search - to find the source of the low iron.
Again, hindsight is so much clearer, and much of this makes sense - but then we were very confused. We now know that low iron can also stress your adrenals.  Though we still don't know the why behind the low ferritin levels.
We visited doctor after doctor, after doctor: Hematologist, Rheumatologist, Endocrinologist, and several Dermatologists. They all told us he was fine, that all his blood work was normal, even though he fell asleep on one of their tables.  

Besides some low ferritin levels (the body's storehouse of iron), no one had anything to offer us. 

Even though this has been a rough few years, we are very aware of God's grace and sufficiency.  We still know how to laugh, and and rest in the peace of knowing our God is in control.  There truly is joy in that.   

I believe the Lord led us to a nutritionist who did a saliva test and determined that Mak was suffering from Adrenal Fatigue.  It is a condition not readily recognized by the medical community so I was not sure how to proceed.  However, he was the only one to offer us any sort of help or hope, so we went with it.

A few months later someone suggested I read a book entitled Adrenal Fatigue By Dr. James Wilson. As I read that book, it was as if he was describing our son.

This paragraph brought so much to light:
Hypoadrenia means Addison’s disease to most doctors. Therefore the only tests they run to detect hypoadrenia are the tests for Addison’s disease. This puts you in a “no-win” situation. If you present your symptoms to your doctor, he may think your symptoms do not justify running the tests since they are not severe enough to signify Addison’s disease. If your doctor does run the lab tests, you probably will not test positive for Addison’s disease and so you will be pronounced “healthy” and dismissed. If you suggest an alternative test, such as a saliva test for hormone levels that could pick up signs of non-Addison’s hypoadrenia, chances are your doctor has never heard of hormone saliva tests. If he has, he may not know that they are as accurate and valid as blood tests, but more sensitive, or that they have been verified and written up in scientific papers and are accepted by many insurance plans. He will probably dismiss the test’s usefulness even though it is a very valuable diagnostic tool for adrenal fatigue. Either way you lose. Unless you have an exceptional doctor, you may come away discouraged, doubting your own symptoms, humiliated for having taken any initiative concerning your health, and possibly with a prescription for tranquilizers or an appointment with a psychiatrist.

I was so encouraged.  We began implementing some of his suggestions and started to see even more improvement in Mak's energy level. 

We have since learned that low functioning adrenals are a known trigger for Alopecia.  So we have two things to battle, and know that the Alopecia won't have a fighting chance until the Adrenals are functioning properly. His strength is increasing, he's not getting sick nearly as often and he is able to think more clearly.  The recovery is said to take about a year, we're not quite half-way there, but we've learned so much.  Not we just need to persevere.

We are continuing with the elimination diet because it does make a noticeable difference as well.  His thinking his clearer and his hair falls out far less.  Still trying to discern what food might be a trigger for him.

2 Corinthians 1:3-4 

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.

Through this all we have been comforted by the Father of mercies.  Each day is a blessing, and though I don't always know how I'm going to make it through a day, His grace proves sufficient.   In the last two weeks I've been given the opportunity to comfort others with the comfort I have received. Others who are just now being presented with a diagnosis of M.S., Adrenal Fatigue or Alopecia.  

UPDATE - We learned this week that eggs cause Mak's hair to fall out in clumps! Though it was sad because he loves them, my heart rejoiced to have another piece of the puzzle.  I've had several months practice of cooking without them.  Breakfast is a challenge - eggs, milk and gluten free...but it's a small price to pay for hair.  

My fun kids

My fun kids
In their favorite tree