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!

2 comments:

~*Fire*~ said...

I read the article too... I can't help but think that the reason Robbie doesn't have more lasting issues from the brain bleeds he suffered around the time that he was born is because he was getting breast milk. When I was told about the bleeds, the outcome was listed as "mental retardation and severe cerebral palsy". In reality what happened was that he ended up with cerebral palsy which is quite minimal (it affects his right side, mostly his arm, hand and foot) and ADHD. Whether the ADHD was a side-effect of the bleeds, that's not really known. What I do know is Robbie's outcome is and was SO much better than the doctors had even thought it could be and now I'm thinking it's because he was given breast milk. :-)

Anne said...

LOL, Robbie is certainly one smart kid!! He is amazing!! <3