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."

Monday, February 11, 2013

Well, now, this is interesting!

I came across an article tonight: Miracle milk helps heal brain-injured formula-fed baby which tells the story of a brain injured 11 month old girl, given donor breast milk.  It ends the article with a letter written by the girl's grand-aunt, who is a lactation consultant.  In it she wrote some information about taurine, which is one of the amino acids that Kaiden is on.

"Research has shown that feeding medically challenged babies this nutrient-rich milk eases digestion, promotes growth and development, and helps to prevent infection. Breastmilk (your mom-made wonderfood) provides important vitamins and minerals for children including the brain-cell builder taurine. While taurine is not an essential amino acid, its high concentration in breast milk does seem to indicate a need that cannot be met by the child’s own body. How much taurine is in formula or cow’s milk? None! Yet extremely high levels of this “smart” substance are found in the brains of children, indicating that it is an important aid to brain growth. Ninety-six percent of brain growth occurs by the age of five years."

When I read that, up popped a flag in my brain - HEY LADY, PAY ATTENTION!!  I thought about it for awhile . . . when Kaiden's seizures first stopped, he was 16 months old and still drinking quite a bit of breastmilk.  When his seizures stopped, his development FLEW.  He gained 4 - 6 months of development in 3 short weeks; after about 6 weeks, had gained 9 - 12 months of development.  After that he still gained but at a slower pace.  He was gradually drinking less and less breastmilk, and about 6 months later when he turned two, he didn't really want it anymore since we had introduced juice.  He still drank some, but only because I mixed with with juice.  This was the reason I stopped short of my goal of exclusively pumping until he was 3.  He wanted juice a lot more than he wanted my milk.  I knew I had enough in the big chest freezer, so I let the girls dry up.  Kaiden continued to get breastmilk, little amounts that it was, until he was 3 1/2; by then it was maybe 4 oz per week, and we skipped a few weeks here and there.  His development was slowing again, and I was concerned.  Having seen what he was capable of, I could not figure out why he was slowing down.  Allopathic medicine's answer was of course, that it's because he has Down Syndrome.  Which, of course, I never listen to because I've seen how fast this kid can learn!

We started Kaiden on amino acid therapy in August 2012, starting with taurine, all because I'd read the book Carly's Voice and his osteopath and I got to talking about dietary therapies for autistic kids. We saw his development pick up the pace again.  We added in GABA, and he was very unhappy and angry, and stopped what little bit of sleeping he was doing at night.  We took him off the GABA and taurine and started theanine.  The sleeping improved a little, but I felt his development had slowed again and so I wanted to try the taurine again.  A little messing around with his supplements and their doses, figuring out he didn't need the TMG, led to him now being on theanine and taurine and his development is back to a good pace and as a bonus, he is sleeping thru the night!!  At preschool they have told me repeatedly they just can't get over how far he has come in the last 2 months! 

What did we do different 2 months ago?  We put him back on taurine.  And now, NOW I find out that's what he was getting from me in the form of breastmilk, back when he was drinking so much of it and his development was flying?  Smack myself in the forehead!  Well NO WONDER MOM!!!  Not that Kaiden, at that age, could have formulated those thoughts and told me exactly what supplements he needed and at what dosages . . .but dang I sure wish he could have, would have saved a lot of time and questions!  And he'd have gotten that much farther that much sooner.  Well, this is what this blog is here for: to help other moms with kids with Down Syndrome, and kids with benign myoclonic seizures.

So, take it from me, a mom's who's been there and is still going down this road!  You never know what you can accomplish unless you try - and that goes for your kids, too!

Saturday, February 2, 2013

Poop - YAY!!

Yes, this one's about poop.  What goes in must come out.  And this kid eats A LOT.  I mean in one day, sometimes in one meal, he eats more than most kids eat in a week.  I've known for a long time that Kaiden's body doesn't digest food properly, which is part of the reason he eats so much.  At our last doctor's visit, we finally found some bromelain-free digestive enzymes . . . and we are FINALLY back to solid poop!  This excites me to no end! 

Yes, I am excited by solid poop.  Why?  Well, Kaiden's 4 and is still in diapers.  He knows when he needs a clean diaper and can tell me when he wants a diaper change, but he cannot yet tell me he needs to go.  Well, he probably tries, but being non-verbal I'm sure I miss some cues.  The great thing about cloth diapers is that the dirty ones smell less than dirty disposables. The less-than-solid poop he'd been having was pretty foul, even in cloth.  This new solid stuff, I can hardly smell it.  If I'm not right next to the kid when he does it, I have no idea that he's pooped until I go to check his diaper!  And the best part  . . .  messy pooped on cloth diapers sometimes (okay, most of the time) require a diaper sprayer and that can get even more messy.  Solid stuff just rolls right off.  So much easier!

Solid poop also means that Kaiden eats less.  Not a whole lot less, but less, because he's getting more out of what he eats.  If he eats this much now, I don't even want to know how much he'll eat as a teenager.  He'll probably skeletonize a few cows per week! 

Weight update - in the last 3 months with the change in amino acid supplements (see last post) he has gained 0.2 pounds - not a whole lot, but it's at least something.  I'm hoping he'll do even better now that his poop is so much better.  Let me tell you  how sick I am of people assuming I'm starving the poor child because he is so tiny.  And of course they are full of unhealthy suggestions, none of which I will consider following because those suggestions are NOT healthy options.  Stop the SAD, people.  It's not good for you!