Monday, February 28, 2011

Petroleum Everywhere . . . Poor Jesse!

So you may or may not realize it, but unless you are living in a wildly counter-cultural way, you are probably swimming in a sea of petroleum just as we are.  I had a major eye-opener over the last week as we have delved further into what may be causing Jesse's allergic reactions.  After he had an anaphylactic reaction we got pretty desperate to figure it out (the soonest allergist appointment we could get is still two weeks away).  We're pretty sure he's allergic to miralax (stool softener for blood in stool issue) and mineral oil (taken for the same reason)--but when the allergic reactions only mostly cleared up, that left us wondering what else could be causing him problems.  We were interested to find that both miralax (polyethylene glycol) and mineral oil were petroleum-based.  So then we thought, "Well, after Jesse's eczema got out of control we had to start using petroleum jelly on it," hmm, more petroleum.  And the medications prescribed were all petroleum based.  After we figured that out, things got a little scary. 

We had the realization that the fleece pajamas he was sleeping in were plastic-based (aka, petroleum), as were his fleece lovie (petroleum), his 50% polyester blend sheets (petroleum), every single one of his stuffed animals   (100% polyester--petroleum), and his fleece blanket (petroleum).  His poor little body was being fed petroleum (miralax and mineral oil), coated in petroleum (Vaseline), laid down on petroleum (mattress?, mattress cover), covered in petroleum (pj's, sheet, blanket), and surrounded by petroleum (stuffed animals, lovie, etc.).  Not to mention his playing on the floor with his plastic legos all day (petroleum) . . . !  A scary prospect, a petroleum allergy. 

Well, thankfully before asking doctors if this were remotely possible (which, apparently, it is extremely rare--I barely found anything online about it), I tore through his room to make some immediate changes.  I stripped the bed, covered the mattress cover with thick cotton beach towels, switched his sheets for some that were 100% cotton, took all the stuffed animals out of his bed and made him a cotton stuffed one from his dad's old socks and t-shirts and a few cotton balls (see below), got out his not-so-warm but cotton slim fit pj's, and got a cotton receiving blanket for him to use as his lovie (thanks, Mom, for the way better one you made!). 

At first I saw no major improvements, because, sadly for poor Jesse, his inflamed and open sores from the months of eczema got infected and needed antibiotic treatment.  But after we got that under control, we saw an amazing improvement.  He now looks the best he's looked in months.  His skin (formerly hived, leathery, rashy, and covered with little sores) is smooth and clear.  The hives on the backs of the knees are better.  The red circles and bags around his eyes are much better.  It seems that we may have a diagnosis.  He's still taking an antihistamine (I can't imagine how high his histamine levels are at this point), but at least now it's under control.  Yesterday, after laying on the carpet at church for a while (petroleum), he got small red puffy rings under his eyes, but I also tried giving him less antihistamine yesterday, so I don't know which caused it.  I'm anticipating that it might be pretty difficult to convince a doctor to test him for petroleum allergy, but I'm going to try.

Update, 7/28/2013:

I wanted to add to this entry, though significantly after the fact.  It was in fact the Miralax that caused his reactions.  It was a little confusing because his symptoms improved significantly but didn't completely disappear after he got off of the Miralax.  It turned out that he also had a dust mite allergy (which also explains his reactions when laying on the church carpet).  But the allergist said that the secondary dust mite allergy didn't explain the level of reaction that he was experiencing, and that since we took him on and off of the Miralax several times and noticed the red circles around the eyes when on and an improvement when taken back off, that he would say (although it was extremely rare) that he was allergic to it and that that caused his extreme health issues.  (He actually wouldn't believe it except that we tried taking him off of it and putting him back on several times.)  His allergy to dust mites seemed a problem primarily because his histamine levels were so high.  But after being off of Miralax for two years now, his reaction to dust mites has calmed down, and taking Zyrtec daily is enough to deal with his mild symptoms.


  1. If there is anything "lucky" in all this, it is that Jess has a mom as smart, devoted and relentless as you to take care of him. You are supermom.

  2. Thanks, Rachel!

    Um, and I think it might be petroleum...and tomato? This allergist visit is going to be so fun.

  3. OMG poor Jesse! I'm so glad you've managed to make some headway.

    I've suffered from eczema for the last 8 years and have not been able to get a diagnosis. Last year was my first big clue with a severe allergic reaction to a new plastic handbag..... supermarket plastic bags etc are a nightmare (I always wear cotton gloves at the supermarket) and just about everything in my house! Just replaced heaps of stuff including buying clothes 100% cotton .... the steroid creams are useless as they all contain petroleum! I'm sure now I'm allergic to petroleum based products which includes all soft plastics.... includes elastic in some of my undergarments!

    It is a struggle but identifying the cause does make it so much easier. I think you are an amazing mum for persisting with this and yes it is so hard to convince doctors! Good luck :)

  4. Wow, Sue, I can't imagine how difficult that must have been--8 years?? I'm still trying to figure out how sensitive he is (I really think this all came from ingesting it in the Miralax and mineral oil he was prescribed). I'm hoping if we give him time off of the medications and creams that it will help a lot. Shea butter works really well for us. But considering that he should probably be avoiding petroleum as muc as possible at this point, it is terrifying to even just look around his bedroom. Isn't it so sad that we're all walking around in constant contact with plastic? Thanks for sharing your experience with me (it will help when I meet with the skeptical allergist), Sue. :)

  5. Hi Valerie,
    Over the 8 years I have gradually got worse, thus the triggers are now much more obvious..... footwear is a constant challenge.

    I am now exploring herbal treatments to try and build up my immune system... I have also had issues with arthritis in my ankles so psoriasis linked arthritis is also a possibility? My research suggests that psoriasis can be exacerbated by petrochemicals. One link suggested a link with blood type (I'm B neg)?

    I like Shea butter too but am also trying coconut oil (internal and external) as it apparently has some beneficial acids.

    I do hope you make headway with the allergist.... Jesse has been in my thoughts. I will keep you posted if I find any 'miracle' cure.

  6. Thank you, Sue, for your encouragement and kindness. His appointment is tomorrow--I'm praying for him that this clears up now that he's off of the Miralax. And I'll pray for you, too, I'm sure it can get really frustrating. I wonder if kefir would be of any help to you. We drink that for immune boosting. Thank you so much for caring! :)

  7. Hi Valerie,
    I do so hope your appointment went well and you had encouraging news. I know how debilitating the allergy can be and even more so for a young child. As a mother and as an early childhood teacher I have the greatest of empathy.

    Thank you so much for keeping me in your prayers too :)

  8. Hello: I found this entry while looking for some info on Miralax for my toddler. As I was reading, I noticed that you said Linoleum was from petroleum. I just thought I'd clear that up for any future readers. True linoleum is not made from petroleum. But they do make vinyl sheets in the same way that linoleum was initially installed in sheets. As linoleum fell out of fashion, and the vinyl sheets became more widely used, the name "linoleum" still stuck for both products. Today you can buy either product. Here's some random flooring website that tells about it.

    1. Thank you for the clarification, Summer Night! Thankfully, it turned out that Jesse was allergic to Miralax and not petroleum, so it didn't hurt him either way (although Miralax allergies are so rare that doctors didn't even consider it until we'd experimented by taking him off and putting him back on a few times). But it was terrifying to realize that he was surrounded by petroleum, I'm so relieved that was not his allergy. I will correct my post as to the linoleum info, thank you for letting me know!