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."

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!

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!

Our year is ending on a high note!

We're still figuring out what Kaiden needs as far as amino acids goes.  As of the last post, we had suspended both the taurine and the GABA, and had him on theanine and were trying out digestive enzymes.  Well, the digestive enzymes, even in a teeny tiny dose, had the same results as the first time we tried bromelaine = pretty darn nasty diarrhea.  That's been suspended for now.  The taurine had really helped with gut inflammation and made the skin on his arms and legs much smoother, less bumpy, so I wanted to reintroduce it at some point to see if we had the same results.  A few weeks ago I got lazy with the rest of his supplement mix (the TMG, citicholine, grapeseed extract, and CoQ10) and Kaiden didn't get it for a few days.  Suprisingly, he started sleeping better!  His blood test last year showed he definitely needed to remain on both the choline and CoQ10 supplments, so those two I slowly reintroduced.  He continued to sleep better, so while leaving out the TMG (which I was beginning to suspect as the insomnia culprit) with the doctor's approval I reintroduced the taurine.  And not only did his skin almost immediately improve, he started - for the first time since the seizures stopped 2 1/2 years ago - sleeping thru the night!  He still needs a fairly strict bedtime in order for this to happen, although his window of opportunity has now expanded to between 8 - 8:30pm.  And even better, with the combination of the theanine and taurine, once again he is slowly putting on muscle tone.  It's most noticeable on his skinny little chicken-wing upper arms, they are now almost the same circumference as his forearms. He had the Pop-eye look going on there for a long time!  Best of all, he is now walking 95% of the time, both at preschool and at home!  His gait is still awkward, but he's doing it!

Kaiden is a funny kid.  He may be non-verbal and refuse to sign, but he finds ways to show me what he wants, what he's interested in.  In the last month he began playing with the spelling functions of several of his toys, so we reintroduced his flashcards and he is totally loving it!  He has his favorite cards, and one of them, "jet", he smiles at and has said either "jeh" or "et" on at least three separate occasions without prompting.  He hands me the items he wants help with or wants to interact with me/with him.  He knows exactly what I say to him and can certainly follow directions, but still has a difficult time with motor planning skills, getting his body to follow what his head tells him to do.   He still does not self feed, finger feed, point, or do other simple things with his hands like wave "hi", but he can "high five", and he can pick up food with one hand and place it in the spoon in his other hand, and feed himself that way.  He can pick up single cards out of a pile and place them into another pile.  He can find/use the on/off buttons on any toy right away, no matter what they look like (and especially if they say "on/off").  I keep saying, I'm pretty sure he can read.  Next up, simple math.

Now for some really exciting news on my end . . . the cookbook I've been working on since we started this journey is going to be printed early next year!  A friend (who I got to know because both our sons had the same type of seizure) got me in touch with a printer who wants to help me realize this dream by printing my first 100 copies for free!  I am beyond blessed here!!

Changed up the amino acid supplements

Friday we had his follow up appointment with the osteopath. Kaiden had not been sleeping well at all lately, even with cutting back on the GABA, so earlier this week I took him off the taurine and GABA completely to see if he'd sleep better. And in about 3 days, he did. Not great, but better than he has been. I don't want to give up on the amino acids, because he is gaining mobility, muscle tone, and able to focus better.

The doctor agreed we should suspend the taurine and the GABA for now, and try L-Theanine (another amino acid) and digestive enzymes for the time being. His last fecal screen (in July) showed inflammation in the gut (blood in the stool + elevated white blood cells); we also talked about my guess of what was causing his diaper rash. It was nice to hear as we discussed everything, "Your Mommy instincts have been right on, so if you see anything or have any more insights, give us a call!"

L-Theanine is supposed to help regulate his sleep cycle, and we are to give him one capsule at bedtime. Last night he got his first dose and he slept pretty well. He was up several times for water (up once for water is his normal sleep routine) but went quickly back to sleep each time. He did wake up earlier than we wanted to get up on a Saturday, so we brought him into bed with us to get a couple more hours of sleep, LOL!!!

I'm a little hesitant with the digestive enzymes; earlier on I had tried bromelain with him and he didn't tolerate it at all. But, he eats pineapple now with no issues so hopefully this will go okay. I had been thinking that in the last several months he's not getting as much nutrition out of his food as he should so this should help - as long as he tolerates it. Breakfast went well but the day's not over yet.

Next appointment is at the end of January. :)

Today's rant:

I get that most of the world is uneducated about what Down Syndrome really is or what it means, and that includes the so-called "experts". But it never fails to amaze me when people say "oh, (s)he must not have it that bad" or "oh, (s)he must only have it a little bit". It's not a viral or bacterial infection, people. It's an extra chromosome. Either you have it or you don't. "That bad" or "a little bit" largely depends on diet and therapies and how hard you make a person work instead of coddling them because you think they can't do anything or you feel sorry for them. Give them a chance. Give them MANY chances. From what I've observed and learned, it's not that people aren't cognitively capable . . . they might not be physically able but that doesn't mean their mind doesn't work.

When Kaiden began to show delays, it wasn't blamed on the illness that cropped up at the time - the yeast overload and then the seizures - in fact, we were told that the seizures WOULDN'T affect him. It was all blamed on the extra chromosome, we were told the delays were normal and we should expect them. But I'd see a glimmer in his eye, moments of clarity - sometimes only a moment, sometimes maybe an hour, where I knew beyond a shadow of a doubt he was in there, in that prison of a body. And once the seizures stopped . . . but I can't blame his delays all on the seizures. It was diet. Yes, diet. For him, nightshade foods. The seizures were merely a side effect of nightshade foods. He, unlike many of the population, has a very low level of tolerability. Highly sensitive.


My main goal of this blog is to get someone else to try eliminating nightshade foods - for Down Syndrome or any other "global delay" disorder. Just try it. Am I right? Or are we an isolated case? I'll never know, NOBODY will ever know, unless more people try it out.

GABA update

It's been 1 month since my last post. It's like the GABA builds up in Kaiden's system. We've cut down to 1/2 capsule in the morning, but he is back on the "up every hour on the hour for 3 hours, sleeps for 2 hours, then up, and may or may not go back to sleep" routine again. I mix his supplements in 8-day packs, so the next time I'll cut back to 1/4 capsule in the morning. At least with cutting back to the 1/2 capsule dosage, he is back to being happy. At the full recommended dose, he was a bitch and a half!!

Kaiden is walking pretty well, when he wants to walk. He can take 20+ steps on his own now, no problem. Because his right hip is loose, he swings his right leg out rather than bringing it straight forward and bending the knee appropriately. But we're working on it and he's getting there. :) GABA is also supposed to help with low muscle tone, and I noticed this morning during bath time that his skinny little chicken wing upper arms seem to be just the tiniest bit bigger. His thighs look a wee bit bigger too, but his diapers still fit the same. We still have 2 weeks to go before his followup appointment regarding the GABA. I wonder what will happen if I have to cut his dosage back so much that it's non-existant?

The experience with GABA has been interesting and a bit unexpected: his food related diaper rashes are absolutely GONE. I get that amino acids are broken down proteins, so thereby the gut doesn't have to work as hard to digest them and it allows the gut to heal . . . makes sense now that doubling his meats was too much protein in his system and caused an inflammatory gut reaction . . . I think. The rash was from his urine, so here then is my latest thought: too much meat = inflamed gut = not breaking down the excess protein = more protein in his urine = diaper rash???? Hopefully the doctor can answer that one for me.