Friday, March 28, 2014

Onto the next step

Finally got all of Kaiden's thyroid results back.  The TSH dropped, but is still a little high.  Everything else fell within "normal" ranges. His Free T3 is at the low end of normal, but the ratio between the Free T3 and Reverse T3 was great. We've now seen what happens when Kaiden is off kelp, and it's . . . not pretty. I had that gut feeling the kelp was doing something but I had absolutely NO idea it would be so dramatic!! Off kelp, his thyroid #'s began to normalize, and he had a huge growth spurt, but at the major cost of cognition.  Which is really the opposite of what should happen . . .but this kid . . . he's just so darn super sensitive to everything, and reacts opposite to so many things . . . wonder if I'll ever figure it all out!!  He actually showed more signs of being hypothryroidic when his #'s were mostly-normal than where he was before - because aside from being physically tiny, he previously didn't show ANY symptoms. 

I did want to note, since I've been watching it now for 3 weeks: off the kelp, Kaiden's lymphedema flared up with a vengeance 3 weeks ago; it got his left hand, pinky of his right hand, and now we're up to two toes on his right foot.  We've been treating it all winter with cold laser therapy, and that's been working really well . . . until being off the kelp.  It didn't recede right away as usual as has been the case with this winter's treatment.  It didn't recede much AT ALL!  3 week later, his right pinky is fine, but his left hand and right toes are still discolored and swollen. Apparently iodine plays an important role with lymphedema . . .  Kaiden's been back on the kelp for 2 weeks now.  He's certainly perkier, much better attention span, back to chattering, but we're still seeing some self-injury behavior, albeit less. I figure it took 4 weeks for him to go down, so maybe it will take 4 weeks to go back up.  It was nice to see that he could sit for 25 minutes working with the speech device in therapy yesterday instead of only being able to sit for a minute or two, preferring to run around the room throwing everything he could get his hands on when he was not himself off kelp.

So what's the next step?  Between myself and his medical team, we've decided the best course of action is to keep him on the kelp and leave his thyroid alone for the time being, although we'll keep an eye on it. Next up is cortisol testing for his adrenal system, and a new supplement to try.  His medical team has been thinking for awhile that Kaiden has a mitochondrial disorder, and the new supplement will help support that.  The cortisol testing will be interesting . . . it's normally a spit test.  Kaiden can't spit, but he sure can drool, so it will be up to me to collect that 4 specific times over the course of 1 day - unless we can do a swab test, which might be easier for collection.  Waiting for a call back from the test kit manufacturer to see what our best option is given our situation.

And I'm quite sure there are certain people out there who think this is the worst plan of action there is . . . but since they haven't spent the last 5 years researching things specifically for THIS child, realizing he just doesn't fit any sort of typical mold for anything, especially not Down Syndrome . . . let me just say that anyone who doesn't believe me, or believe in what we are doing for him, can come spend time with us (at their expense, of course) for a day, a week, a month, whatever.  Unless you're blind (and I don't mean physically), you'll change your mind after meeting and spending time with him ;-)

Which brings to mind another point: Here I've been thinking this blog would be helpful for other families with a child/children with Down Syndrome . . . but it seems the more I learn, the more I find that Kaiden just doesn't fit any mold - and especially not that of Down Syndrome.  It's not just about having an extra chromosome, but that chromosome mixed in with all the other genetic material and it makes for an endless combination of variations.  I'll still keep up with this blog; I like to document this journey with Kaiden because I find it fascinating.  Scary at times, yes, but fascinating!  And if together we can help just one other person, the documentation is more than worth it. 

A couple bright notes:

April 2nd is Autism Awareness day, and PRC is offering the LAMP system app for the iPad at 50% off for that day only.  While we don't yet have an iPad, we're planning to go ahead and purchase the app anyway. Worst case scenario - if we fail to raise the necessary amount for the speech device that would work best for Kaiden (we're almost at 60% of our goal!), the funding we already have would cover the cost of the app and the iPad.  Best case scenario, if something happened to his speech unit and needed fixing, we'd at least have a back-up plan in place.

Thanks to being a product reviewer for a large blog, I got my hands on a copy of Raun Kaufman's Autism Breakthrough book.  It's about the Son-Rise program, and let me tell you it is fascinating reading!  Take what you think you know about autism therapy and do . . . the opposite.  I'm only a few chapters into it, and tried "joining" today with Kaiden . . . I don't think I've ever seen so much eye contact from him, and the laughter . . . followed by better behavior and (non-verbal) communication for the next few hours!  Can't wait to read the whole book, then research their website for all the details of the program!

Wednesday, March 19, 2014

Kelp, what are you doing??

Right, so last update in mid-Feb Kaiden had been off kelp since the end of January to see what it effect it had on his thyroid. 

Off the kelp . . . for about 4 weeks Kaiden was fine.  Then he brought home a really super nasty cold virus (which he shared with me . . .) and for the 5th week, I couldn't tell if it was just him being sick, or if it was being off the kelp that wrought a change in him.  He was tired, puffy eyes, crabby, unhappy, no focus, "dull" look, eyes half open, an emotional mess and TERRIBLE self injury behavior (SIB).  And of course, this was right when we had our news feature . . . prompting lots of people to contact me with helpful info assuming this is what he's like all the time, which he's NOT!!!!! Seriously I cannot stress that enough, what he looked like in the news video is NOT what he's normally like.  It was great exposure that I couldn't turn down for the fundraiser, but terrible timing for the world to see what our little boy is capable of.

Onto week 6 . . . the virus was mostly over, but those symptoms didn't go away.  I even noticed what I thought was a tiny bit of swelling in his neck.  Since I was watching for thyroid issues, I had his thyroid retested sooner rather than later.  While we're still waiting for his Reverse T3 to come back, his TSH dropped a bit, and the rest was all normalized into acceptable ranges.  And he grew 2" in height, gained a pound, and 1/4" in head circumference.
Wait . . . what??  Take him off the kelp and he grows?? Like a major growth spurt for my tiny child?? Okay, so it was affecting him.  But it was also playing a significant role in his cognition.  After the retest, I reintroduced the kelp, at half the dosage I was giving him, to see if that would bring him back to his normal sassy sweet self.  And in about a day, he was happy, more focused . . . But that half dose didn't last him 8 days (previously getting 1 little scoop every 8 days).  By day 6, he was such an unfocused, unhappy, self-injuring emotional wreck (and I mean self injuring to the point he should have been wearing a helmet, he is so bruised up!!) that I gave him another half dose.  Seeing some good improvement, I gave him another half dose on day 7 (to put him back to the amount I had been giving him prior to January's test) and within a few hours?  Back to calm, happy, focused, self entertaining, reading books.   A HUGE, remarkable difference in 24 hours. 

During this time, I also tried removing his evening primrose oil to see if that had any effect on the SIB, and it hasn't, so I'll be reintroducing that.

Now . . . the evening of March 16th . . . with the full moon . . . and the fish oil protocol . . . and who knows what else . . . I swear I heard him talk in his sleep again.  I haven't heard him talk in his sleep since March of last year.  Three times last year I heard "too hot" as I heard him kick off his covers, "sister" (no idea on that one), and "too early" around 5am one morning.  This last time, I woke because he whimpered then started coughing.  And as I drifted in and out of sleep (his coughing will keep me awake), I heard "I want my Daddy" and then later "I love you Dad".  Now, I know my husband didn't get up and go in there . . . since being on the fish oil protocol, Kaiden's started making consonant sounds again and no longer bleating, so hopefully this is also part of the progress with fish oil.  And I really hope I didn't just dream it; it was too real, too lucid.

So my question is . . . What's in the kelp that is affecting him?  What is keeping his cognition up?  What's keeping him from growing?  If I could find something to keep him so focused that would also allow him to grow . . . that would be ideal.  But I've got to figure out what's doing what.  So far, my research has turned up nothing of real use; there's a lot of conflicting information out there regarding kelp and its nutritional content.  I suppose this is kind of like the sweet potato situation - I have absolutely NO idea what's in sweet potatoes that triggered his benign myoclonic seizures (infantile spasms) . . . there's just nothing out there in the internet world that I can find to make that connection, but it doesn't stop it being true for Kaiden.

Saturday, March 8, 2014

We made it onto the ABC News! :)

Our fundraising efforts have made it to our local KAALtv ABC 6 News!

During the interview I did talk about the seizures/food connection, but they have limited time for their segments, so that part didn't make it into the final video.  Ah, well, someday!!

Tuesday, March 4, 2014

Non-verbal communication

We're waiting on another loaner unit speech device for speech therapy at school, hoping it's in by next week.  Having worked with one for 6 sessions, he expects it to be there, and was really disappointed when it wasn't at the last session - already packed back up and shipped back for the next person.  I can't wait for when Kaiden can express himself fully!! He gets so frustrated not being able to do that and turns to banging his head on hard objects to vent his frustration, which of course, causes some lovely bruising.  Kaiden's online fundraiser is off to a great start!  We're currently at about 30% of our goal thanks to a lot of very generous people!!  Someone has even offered to organize and run a benefit for him should we need it!

I've been doing a lot of "Show Mama" with him, and now have to remember to say "Tell Mama" instead of "Show Mama" as another way to encourage speech (with or without the speech device).  I've mentioned before, maybe not here, but other places - Kaiden invented his own non-verbal language:

The how:
  • comes to someone, raises arms = pick me up; once picked up, will use carrier's arm as a joystick to indicate where he wants to go
  • pushes down on a seated person's knees to tell them to get up
  • gets behind standing person to push them in the direction he wants them to go/at certain objects
  • takes person by the hand and pulls them in the direction he wants them to go/at certain objects
  • takes person by the hand and pulls down to indicate either sit on the floor, or help with an object near the floor
  • brings objects to person he needs help with
  • brings books/flashcards to person he wants to read to him
  • brings toys to person he wants to play with (including the dog)
  • brings bib to indicate hunger/thirst
  • runs into the bathroom and closes the door to indicate the need for a diaper change (this one is about 75% consistent)
More specific:
  • snacks - brings bib to indicate hunger.  Pulls or pushes me into the kitchen.  Asks to be lifted up.  He can open the cupboard, take a plate out, close cupboard door, place plate on cutting board, open freezer (with a little help, it has a great seal!), take out his favorite bag of frozen fruit, place next to plate on cutting board, wait for me to prepare, helps carry full plate to table, brings me bib (if dropped on floor), tries (unsuccessfully) to climb into his chair, and can self feed his snack of frozen fruit.  Pushes me away to indicate he'd rather eat his snack alone!
  • brings bib to indicate thirst.  Depending on the time of day I may offer him water instead of a meal or snack.  He can take the sippy cup out of the (opened) fridge, drink, place cup back in fridge, and close fridge door.
  • meals - brings bib to indicate hunger.  He knows that a bowl = meal and plate = snack.  Depending on the time of day I may offer him a choice of meal or snack.  If I have a pre-made meal waiting in the fridge, I offer that to him.  He will push it away if it's not what he wants (doesn't mean that isn't what he gets!!).
  • mealtime - taps empty spoon on table or person, or looks at person to ask for help loading spoon, will feed himself as long as he has help loading each spoonful
  • pushes bowl away at mealtime to indicate dislike of a meal
  • pushes bowl away at mealtime to indicate he's done eating
  • indicates he wants a bath by pulling/pushing me to the stairs, I lift him over the gate, he goes up the stairs and into the bathroom to the tub.  Will throw his bath toys in the tub to indicate he wants to play in the bath for awhile.
  • indicates he wants to play in his room by pulling/pushing me to the stairs, I lift him over the gate, he goes up the stairs and to his bedroom, I lift him over the gate and he happily plays.
  • indicates he needs a diaper change while in his room by coming to the gate and throwing toys over the gate into the hallway
  • indicates  he wishes me to play or read to him by pulling/pushing me into the living room, pulling me down to sit on the floor, then brings me toys or books
  • indicates he wants to watch a video by pulling/pushing me to where the video he wants to watch is stored (videos stored on top of the piano or inside the TV cabinet).  If videos on top of piano, raises arms to say pick me up, then picks out which video he wants to watch.  If video in TV cabinet, pulls/pushes me to TV, pulls my hand down, and pulls my hand to the knobs on the TV cabinet, then picks out which DVD he wants to watch.  Once one is chosen, he can put the DVD into the DVD player (must be lifted, it's on top of the TV).
  • indicates he wishes me to vacuum the floor by pulling/pushing me to the vacuum and touching the on/off switch
  • indicates he wants to go somewhere (although I have no idea where!!) by pulling/pushing me over to his coat and shoes
  • indicates he wants to go to bed by either raising his arms to be assisted climbing in my lap, or pulls/pushes one of us to the stairs, goes upstairs and into our bedroom, where he likes to be cuddled to sleep.
  • gets out of bed at night to indicate thirst or a diaper change.
  • shows affection by touching his forehead gently to a person's cheek.  He had been doing this for quite a while before I thought to ask how he says "I love you".  This is the motion he consistently made upon being asked.
Kaiden has an excellent spatial memory.  No matter where or when he left something in the house, he can find it, even if I can't.  Also for where activities have previously occurred outside the home.

Most things, as long as it's his idea, he can do it, same with the aim of touch.  But to tell him to do the same thing, he can't.  Part of the motor planning process that doesn't work right with motor apraxia.  It's not that he doesn't want to, he just can't get his body to do it unless it's his idea.  I like to say it's like me and choreographed dance - cheerleading, line dancing, the YMCA, etc.  I can watch it all day long, but I can't get my body to repeat the moves, especially not in the correct sequential order; it just ain't gonna happen.  Now if I wanted to dance on my own, sure, I can do that.  But to watch someone else and try to follow?  Nope.

Now, there are things he can do upon being told.  Things like: come here, sit down, stand up, give it to me, go get your bib, put your bib/napkins on the table, go get the toy for Lola, pick up the toy(s) you threw, put it back, put it in, take it out, help me dress you, hand me the diaper pins, hand me your pants, socks, shirt, shoes, coat, mittens - same goes for removing coat, mittens, shoes.  He can help me remove his shirt, but not pants or socks.  If he's standing for dressing/undressing, he knows to use my shoulder for balance and lift each leg when prompted by a touch to the calf or back of knee. Sometimes he'll throw a 10 minute tantrum first, but he'll do these things.  My favorite new thing he'll do upon being told: give me a hug!  This one is huge for him; previous to this he would ask for affection by asking to be picked up, then cuddling, but would not return a hug nor spontaneously give one.  There's more, I'm sure I'm forgetting some of his non-verbal communication.

I have no worries about his receptive communication; he's a smart kid.  But it's frustrating for all of us, especially him, that he can only indicate his wants/needs.  He can't tell me if he doesn't feel well, or if something hurts, he's too hot/cold, or if he's sad/scared/confused/angry/happy/etc. (although some of that I can read his body language).  He can't point, wave, or sign, but he can touch.  His expressive communication is what we're trying to coax out.  And for that, until he's verbal (if he ever is), he needs the speech device. 

Sunday, March 2, 2014

Fundraiser Feature!

We've been featured again in the Albert Lea Tribune!  This time about the fundraiser for getting Kaiden his own speech device. :)  Thanks to some very generous people, we've raised just over $2K so far, but we still have a long way to go with a goal of $8K.  Every little bit helps!!

Link to article:

Link to fundraiser: