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Monday, 21 September 2009

Another answer, another costly mistake

First and foremost, thank you for your prayers in finding answers. They have led us to finding the dairy culprit in our coconut milk powder and just now, they have led us to discover the mystery behind Ethan's wheezing.

His Protopic medication...

First of all, this website has great info on the ointment:

You'll note the comment about Protopic at 0.03% not being recommended for children under the age of 2 AND moreover, that the 0.1% strong dosage is NOT to be used on people under the age of 16.

Well our delightful dermatologist prescribed the 0.1%.

We have not used it on his face for several weeks now in hopes of giving him a break from these ointments but tonight, his face was just too bad, we decided to administer some in hopes of gaining some control over the eruptions all over his face. I smothered a good portion on his face & forehead and by the time I started putting his bedtime sleeper on, he was already wheezing.

Then it dawned on me... the only thing different tonight was applying the protopic on him. Then I recalled all those evenings after bathtime, just before bed, when he would wheeze while nursing and cough throughout the night... those were the nights I used the protopic!

So you'll also read the warning about overdose & allergic reaction: difficulty breathing.

Once again, my ignorance, my lack of time to do enough & proper research BEFORE giving Ethan something he has been prescribed has led us to an O.D. of protopic... a drug being linked to skin cancer.

These have been two blows to me that have left me wondering if I am competent at all in being Ethan's advocate, in seeking what is best for him, in being his mother. These have been two blows to me - where I have been the one to make the costly mistake - first with the milk and now with OD-ing my son on a dangerous drug.

I know, this sounds like one big pity party over here but I just can't handle this feeling of wanting to protect him only to discover that I have been the one causing him harm.

And to make matters worse, Protopic lowers your blood cells that help you fight infection... perfect timing with the threat of an H1N1 epidemic, eh? Why not vaccinate him? Well, we'd have to make sure it was the vaccine that did NOT contain the mercury AND the egg protein (due to severe allergies).

Speaking of allergies, we just got some additional results from Ethan's RAST blood test - he came back highly positive to fish, flax and peas (confirming my suspicions) but negative to carrots, chicken & beef. I have also been suspecting kidney beans and will stay away from most legumes until more tests can be done.

Somedays I feel like we're going to lose him. This precious little boy with a life story to tell will be taken from us. I know it's morbid and pessimistic and maybe it's just the lack of sleep starting to get to me but I watch his precious little face look up at me as he flashes that toothy grin (hey, eight teeth is toothy to some people)... and my breath catches in my throat as I wonder if I will have to know life without him someday.

He is too PRESENT to be taken. He makes us laugh, he makes us cry, he makes us LIVE with purpose. But I fear his weakened immune system and the increasing list of allergens. I fear more costly mistakes and the unknown.

Just yesterday he learned how to shake his head "no" and to nod "yes". He LOVES his grapes just as Melina & Anika did. If I talk too loud or sing too loud, he covers his ears! But if I sing a tune he likes, he immediately pipes in as though he knows the words...

This is how he lives in my heart. I would watch others eat all the food in the world while I lived off of rice alone if it meant I could still nourish him through my milk. I would continue without sleep as long as I have to if it means he is still with us.

I love him so much as though he himself encompassed unconditional love.

I pray this is just my roller coaster ride of emotions dealing with the lows. I continue to have faith that God's purpose for Ethan will include longevity and a great wisdom about health to share with others. I choose to see a strong and patient man whose compassion for the suffering will be inspiring.

I see my son, a man with purpose, whose rocky beginnings will be a testament to the mountain of faith he will have acquired. "Blessed are the weak" Jesus said, and "blessed are those who suffer."

So blessed be you, my precious son. Rest peacefully as you heal and grow stronger that you may praise God with us for the grace and mercy He has shown you. And may He grant us wisdom in the privileged role of being your parents. In Jesus' precious name, I pray... Amen.


Anonymous said...

I'm so glad to hear that you've identified this as the cause of the wheezing.

Re: the Protopic, I have complete confidence in you as a mom and as an advocate. Sometimes it's a trade-off. Ethan's situation is extraordinary, and you have very few tools at your disposal right now. You used it because it worked, when nothing else did, to ease his suffering. You are doing the work of a dermatologist, an allergist, a dietitian, (on top of being a full-time caregiver, housekeeper and chef!) and you shouldn't be blamed for following the advice of a professional. Keep up the good fight, and let me know if there's anything I can do!

It's sad to see Ethan's skin in rough shape, but his smile is adorable, and I love imagining all the gains he's making in the weeks since I've seen him. A video of the kids would be so great! I wish I could hang out with them. I'm going to try to be back in Canada for January, so see you in 14 weeks, give or take!

Anonymous said...

Hey Rita,
I think you're too hard on yourself. You cannot be blamed for doing something that a medical professional suggests. You're desperate to help Ethan, and that's perfectly understandable. Sometimes there is no way of knowing how something will affect someone without trying. So in my books, you've been right in your efforts.

You are a great mother. You prove this every day with everything you do to try and help Ethan. You are fully invested in this process, and you are to be commended.

I continue to pray for you and your family. Ethan sure is a cutie. I hope he feels better soon. Take Care and God bless!
Your Cousin,