Friday, February 22, 2013

Lymphedema strikes again!

Okay, it really struck about a month ago, in the last half of January. About a week before his doctor's appointment.  I let it go, because I wanted his osteopath to see it in progress, and to see if he had any other ideas on treating it than the way I know how to treat it: fruit only for a few days, slowly add back in veggies for a few days, then slowly add back in white (light protein) meats.  He first developed lymphedema when he turned two, after being told by his then pediatrician to double his meat intake.  Big mistake.  Even bigger red flag when said pediatrician didn't seem one bit concerned that he had it; she was only concerned about the weight loss that came with treating it.    Well, I treated it, got it taken care of, haven't seen it since - until right around his 4th birthday.

A few things of note:
  • in January and February every year, presumably from the Minnesota cold, Kaiden's circulation in his extremeties is terrible.  His fingers and toes turn bluish purple and need some massage to keep the circulation going.  Squeeze them a few times real quick, they go back to normal color.  Doesn't seem to matter how warm I dress him.
  • Last winter, when Kaiden turned 3, the winter was really, really mild.  Warmer temps all winter long.  No issues with lymphedema, and the circulation issue wasn't too bad.
  • This winter has been cold again (like it should be!). When the lymphedema came back this time, it was right after a cold snap with sub zero temps during which Kaiden had pulled off his mitten while I carried him into preschool.
  • 2 months prior, in early December 2012, I had removed the TMG from Kaiden's supplements (see earlier posts).  Also at the same time, I eliminated grapeseed extract, as I couldn't tell if it was making a difference or not.
  • Since we started amino acid therapy last summer, Kaiden upped himself to 4 meals per day, and therefore was getting more meat, but still portioned out to be not more than 1/3 of any meal, and not any with breakfast - staying well within the recommended 20 - 30% of daily intake.  We still avoided beef and pork for the most part.
  • This is the first winter Kaiden hasn't had any breastmilk. Not sure if that plays a role or not - inflammation, type of protein and fats.
  • We were doing a lot more starches, in hopes that it would bulk up his runny poop. The more parsnips he ate, the firmer his runny poop was but it wasn't until we started the new bromelain-free digestive enzyme that his poop returned to normal.
The osteopath had recommended that we give the new digestive enzyme at least a week before trying anything else to treat it; he thought it just might take care of it on its own.  It didn't.  So I got the go-ahead with doctor's approval to do the same diet we did the last time.  Suprisingly, that didn't take care of either. I was giving him coconut milk, avocado, and chia seeds along with the fruit, since last time he got breastmilk with it (protein and fat).  Three days into the diet plan, his whole left hand became very hot and swelled up.  I was concerned about infection, but there doesn't seem to be any evidence of one.  I eliminated the coconut milk, avacado, and chia seeds and did strictly fruit only for 3 more days.  Then added in veggies for 3 days, and tonight added back in chicken.  Right now it involves 3 fingers on his left hand, a little swelling in the back of that hand, and 3 toes that while aren't swollen, aren't quite the right color either. The swelling has gone down some - it's nowhere as severe as when he was 2, but it's still there.  Thankfully they never got so swollen that the capillaries burst, turning his fingers black like last time. 

Today, doing more research into lymphedema (primarily because I couldn't remember all I read 2 years ago), I came across mention that grapeseed extract is excellent for lymphedema because it helps bring down inflammation.  Now, I know this kid's got big issues with inflammation.  And I took him off grapeseed extract 2 months before the lymphedema came back.  So, we started that back up tonight and will continue on with it.  Too much starch, just like too much protein, also isn't good for lymphedema, so we'll be cutting back on that.

I also read on many websites that green tea is excellent, as is a juicing of celery, parsley, and spirulina.  I went to the grocery store and picked up the parsley (have everything else already), green tea, and a Everyday Detox tea which promotes healthy liver function.  Yes, I know it says not to use with children under the age of 12 - but, I feel comfortable with the ingredients, and it's not like he's going to get the adult dosage of 1 - 2 cups per day.  If I can get him to take just a few sips per day, I'm good with that.

The osteopath had one other suggestion to detox him, a product called UltraClear.  The kid's version is called UltraCare.  So, I had them ship me some . . . and it turns out to be a rice-based "medical food" - basically formula.  I called them back, asking for clarification on how this is supposed to help.  Kaiden's liver enzymes came back a little high, meaning his kidneys are sluggish from the buildup of protein.  Yes, I understand they like to use it when a child is on an elimination diet - but I am NOT giving him a rice (or soy, or dairy, or wheat, or corn) based formula for extra nutrition, when he's getting a crapton of nutrition already.  Kaiden does NOT do well on over-the-counter vitamins. Just like he cannot tolerate bromelain.  Been there, done that.  All that is eliminated during this treatment is excess proteins and fats, because he has a buildup of protein and needs to flush it out!  I have not eliminated his whole foods vitamins, amino acids, or other supplements.  I feed him as often as he asks for food, sometimes 6x per day.

On top of it all, he came down with a cold yesterday afternoon, after attending preschool where I was informed that ALL the kids there were sick with a cold.

I've come to the conclusion that Kaiden must have what's called Primary Lymphedema, which is an incomplete or abnormal lymphatic system at birth.  And apparently it's been noted to occasionally show up in children with Down Syndrome.    But, man, you really gotta dig to find the info.

An anonymous quote I came across today seems appropriate:  "Intelligence:  Not because you think you know everything without questioning, but rather because you question everything you think you know."


Gemma xme said...

Just wondered if you had considered: CARRAGEENAN

I got this information from

“Carrageenan induced inflammation-protocol” is a phrase that keeps coming up in my histamine research. Why is this relevant? Carrageenan, also known as Irish Moss, is a common food additive considered to be natural and healthy and even touted as an anti-inflammatory on natural health sites. It’s often used in raw food dessert recipes. But a quick Google search turns up thousands of studies where anti-inflammatory medicines and compounds are tested on “carrageenan induced-inflammation” or “edema” – it’s actually used to cause pain and inflammation in animals (poor things). I’ve also found a number mentioning mast cell degranulation which makes a lot of sense. These are all obviously terms those of us with histamine related disorders don’t want to hear associated with our food.Ouch. I used Irish Moss for years and this explains a lot…
You’ll find carrageenan/irish moss in pretty much anything tasty on the supermarket shelf as well as toothpaste, shampoo, medicines, and many more.

Anne said...

I hadn't heard of that, thanks for the info! I make all his foods from scratch so I know he doesn't get any carrageenan, and it's not in any of his supplements. But I'll add it to my list of things to avoid for lymphedema! :)