Thursday, October 6, 2011

Oxalates move to front burner again

We have been on the low oxalate diet (LOD) for just over a year now.  We started it, because we noticed that although Grayson was doing better overall, he still had a lot of ups and downs that we couldn't tie to anything.  The bloating was not subsiding no matter what we did for him.  So the LOD was originally instated as a trial in September of 2010 and the severe dumping we experienced (in both boys, surprisingly) lasted well over a month.  It was one of the most trying times in our years of biomedicine.  We knew this was our new necessity!  The LOD became the new norm.

A year later, we are still on the LOD, although we do allow a few moderate oxalates in the diet on a rotation basis like GF oatmeal (due to such limited breakfast options) and very small amounts of strawberries.  Other than that, we are very strict with the diet.  So it came very much as a surprise to me when I saw this in Gavin's little potty last night!!

These are oxalate the apparent thousands!! 

Crystals coated the bottom of his potty - this was a small "tinkle" left behind

Very close-up of the crystals, OUCH!  They look painful, don't they?

He has been having mood swings, BM changes and constant hunger that I was chalking up to the parasite (although we just recently treated with Alinia for 34 days). Anyway, yesterday was a busy day and so when he used his little potty above (as we were running out the door), I left it. It was just a tinkle anyway. When I got home and went to clean out the potty, I couldn't believe what I found.....a potty full of the oxalate crystals you see in the pictures!!! And there was not much urine to create this, so it was highly concentrated!

I have NEVER seen this from him before. The things that have changed in the recent past, besides the parasite medicine (which he has been off of for about a month now) are the following:

-Started feeding green beans, which we used to avoid or only give in very small amounts.  Some green beans are high, so this could be part of the problem.

-Allowing small amounts of strawberries, not even adding up to 3 strawberries at a time, every couple of days. We've been doing this for a while though. Strawberries are moderate oxalate.

-Just 2 days (today was third dose) ago we began using BioRay Cytoflora, the dump was the very next day after starting it, not sure, if this can cause dumping.

-We are in the midst of a supplement break and have begun re-introducing his supplements back in slowly. So far we have added back Vit D3, magnesium, krill oil with astaxanthin, zinc, flax oil, and today lithium orotate.

-Haven't reintroduced biotin back in yet, maybe I will add that back in today even though it hasn't been a few days since adding the lithium...

The symptoms we have been having for about a week are: excessive hunger (constant I should say), saying "hiney hurts", mood swings, defiance, lacking cooperation especially when it involves his older brother (lots of fighting), frequent potty accidents (it's like he doesn't even try), he even had a small BM accident yesterday which he has never done, whiny, looking for his lovey all day (which is kept in his bed for sleepy time, so now he is up in his bed reading books to be with it), saying he wants to "go to bed" all morning (but could be related to needing his lovey), had a very odd BM the night before the crystals appeared that was fluffy, chunky and half floated, half sunk and lastly his keratosis which is pretty much always there, is worse lately. I was thinking it was all related to the parasite possibly coming back, but now with this potty incident, I am thinking dump and wondering why.  Time to get back on the Trying Low Oxalates Yahoo board and figure this out.  It most definitely could explain the random bouts of regression we keep experiencing.  I am certainly confused between the parasite symptoms and this now though!!  In one strange sense, this is a bit of a relief, because maybe the parasite ISN'T back, like we originally thought!!  We will need to retest in a few weeks to confirm anyway, but the symptoms are so similar it's hard to tell.  It's pretty obvious we have an oxalate issue to resolve now though.


Anne said...

Oh my heart goes out to your little one. Truly. I am in the midst of all this myself, and I just can't bear the thought of watching someone small and young and growing with this problem. You are the strongest woman for taking this on, and I continue to wish you all the best of luck and health with this. I talked to a colleague who has Crohn's and she says her family keeps congratulating her for having the strength to go on fighting and trying to figure out how to improve her health and her response was - as is mine - what's the alternative? There isn't one. Again - strength to you, and thanks for directing me to the low oxalate group, they are still life savers for me.

Oh, btw, you wanna know what the conventional doc told me last time at the hospital? "Have you tried peppermint oil?" - hahaha, good for a laugh if nothing else...:-). If he said that about my little boy I am not sure I could have kept my calm, though...

Jessica said...

I have a feeling the combination of adding the green beans (which I am learning are high oxalate, not moderate) and starting the B6 and P5P which encourages dumping by moving stored oxalates out of the cells was what caused this severe dump. We have never seen anything like this before!

Good things come out of every challenging situation though. I've not only learned that Gavin is definitely effected by oxalates (which we never confirmed with testing, only gone by symptoms) and that it probably was not the parasite returning that was causing his erratic behavior (yet anyway).

I keep hoping they won't have to deal with this stuff forever, if we could just heal them, but I have come to terms with the possibility that they may have to learn how to take care of themselves to remain in managed recovery (AKA - healthy) as adults.

Anonymous said...

Thanks for posting these pictures. As horrible as it looks, I hope you find some comfort in knowing that you are on the right track with your sons' healing journey. I wish you the best.

Jessica said...

Thank you for your comment. I feel like we are on the right track, the past couple of days have been SO much better than they were. It's obvious by your screen name that you too are in the low oxalate boat so I know you get it!

GiGi said...

hey jessica, it's me gina-your new stalker on facebook! could you tell me which epsom salts you order from salt works? i see that they offer fine/medium/coarse as well as a magnesium blend. thanks!

Jessica said...

Hi Gina,
I love a good stalker! (wink) I buy the fine salts.