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. 

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: http://www.albertleatribune.com/2014/03/technology-aids-in-teaching-disabled-boy-to-learn-words/

Link to fundraiser: http://www.gofundme.com/6t86kw

Mother's intuition kicks in again . . .

I wanted to get Kaiden's thyroid levels checked again.  He does not show one single symptom of hypothyroid except that he is still very, very tiny and I just want to look under every stone.  At age 5, he is now finally just over 36" tall and a whopping 28.5 lbs dripping wet.  His head circumference is still very tiny, too, at about 18.5".  He is finally gaining weight though, with the right digestive enzymes, at a rate of about 1lb per month.  We had a couple of setbacks with gastrointestinal illnesses last fall but he's gained that weight back and continues to gain.

He hasn't had his thyroid levels tested for a couple of years because the last few times, his levels looked great.  This time . . . he has a high TSH and a very slightly low RT3, meaning he is slightly hypothyroidic (although, again, there are NO symptoms).   Kaiden's doctor recommended levothyroxine at first, but it contains an artificial dye, so that's off the table.  If we have to do thyroid meds, I'd prefer to use something along the lines of Nature-Throid.  He was on synthroid for a few months as an infant, but the endocrinologist felt Kaiden was tested at the wrong time after birth (something about how the levels fluctuate after birth) and that he never needed to be on it in the first place, and being on it sent his levels too far in the opposite direction.

As I was contemplating what to do . . . this nagging thought kept coming back.  I've learned, I better listen to that voice!  I've given Kaiden kelp for the last 4.5 years, ever since he was anemic at 6 months old.  I give him a tiny little scoop once every 8 days.  Although I know kelp should only be used for the short term as it can affect the thyroid, I was thinking once every 8 days should be a small enough amount that it wouldn't affect it, just be some occasional additional nutrition.  Except as he grew bigger, I increased the scoop from a slight amount to a half scoop, then to a full scoop, which is in the neighborhood of approximately 1/64th of a teaspoon.  And in the last few months, I've been ignoring that little voice that said, hey, does he really still need this?  Am I giving him too much?

I argued with the doctor - a lot -  over the suggestion of levothyroxine; I really, really, did not want to put him on a synthetic med.  Everything in me was screaming it was the WRONG answer.  I gave it a lot of thought; then finally listened to that little voice nagging me about the kelp and talked to the doctor again.  I love that he told me I am stubborn, and that it's a good thing!  I reminded him that Kaiden's been on synthroid before, and what the effects were.  And that Kaiden is SO incredibly sensitive to so many things - OTC calcium supplments (not plant based), OTC bromelain, the dosages of his amino acids, etc. At one point last year the doctor had suggested we double the kelp - although I cannot remember why at the moment - and doing that, Kaiden DID show symptoms of hypothyroidism. I suggested before we go with any thyroid meds, I need to listen to this voice and remove the kelp from his supplement routine.  Then retest in 3 months, and see what happens.

On to . . . diaper rash!  If you remember (or at least go way back in the blog) Kaiden used to have this nasty diaper rash caused by something in certain fruits.  We had a whole long list of fruits to avoid.  Lately, this rash has crept back.  It's nowhere near as bad as it was then; this is just one small spot, but it is a very stubborn spot.  It'll go away with my Healing Salve, but stop using it and it comes right back.  Back then, we tried giving Kaiden GABA for cognitive supplementation.  While it didn't work for cognitive issues - instead it made him frustrated, angry, and sleepless - it DID somehow cure that diaper rash within 3 days.  I have absolutely no idea why GABA took care of the diaper rash, none, not even the remotest, faintest idea beyond my thoughts from back then.  But seeing this rash come back . . . I'm considering putting him back on it for 3 - 5 days or so, at a very tiny dose, to see if it takes care of the rash again. I'll put up with an angry Kaiden for a few days if it means the rash will disappear for another year and a half!! Although, I sincerely hope Kaiden's not still in diapers that long . . . but until he can tell me that he needs to go instead of telling me that he's already gone, we're stuck with diapers. But, haha, that's okay.  I LOVE my fitted diapers!

Fundraising time!

Kaiden's been using a Vantage Lite (LAMP system) loaner unit in speech therapy and is doing fantastic!  He picked it up quicker than anyone thought he would (except me, LOL!!  I KNOW he's a smart little stinker!!).  But, since it's a loaner unit, it's time for it to be used with another child.  These speech devices, while fantastic . . . are not cheap.  We're talking a range of $6000 and up, up, up.  So . . . here we are . . . fundraising time!

Here is our GoFundMe page: http://www.gofundme.com/HelpKaidenTalk  Please go check it out - donations of any size are immensely appreciated, as well as sharing his page via social media.  We're off to a great start, and are so blessed to have so many wonderfully caring people in our lives!

Just clarifying . . .

With the recent articles published about Kaiden's story, I have received many wonderful comments, and people are really beginning to share his story! 

I do, however, want to clarify a few things.

In the first article published in our local Albert Lea Magazine, there was some incorrect information that unfortunately, downplayed the amazing things that happened.

• they wrote that I first noticed Kaiden's sensitivity to nightshades when I started keeping a log of what he ate.  NOT QUITE correct - I had been keeping his food log for months, but didn't connect the dots until I realized I had to keep track of what I ate, too (because of breast milk).
• they wrote that "eventually, in conjunction with a calcium supplement, his seizures stopped".  NO!! The calcium supplement had nothing to do with his seizures - it did not stop or slow them.  Trying the calcium supplement and seeing increased cognitive function is when I began looking into TNI (Targeted Nutrition Intervention).
• they wrote that in 4 to 6 months, Kaiden excelled. NO!!!  In THREE short WEEKS, he gained 4 to 6 months in development.
• they wrote the whole family is on the paleo diet.  NOT QUITE.  It's really just myself and Kaiden.  My husband eats what I cook here at home, but eats whatever he wants otherwise.

In the many very appreciated!!! shares, some are writing that going paleo "cured" Kaiden's seizures. 


This is not what happened. 


I mean, sort of yes, but not exactly.  This needs clarification!  "Paleo" has many different versions.  Paleo at its easiest, is being grain, dairy, and legume free.  There is also Primal (allows some dairy & nightshades), Raw (everything is raw, including meat, can also include nightshades), Auto-immune (eliminates nightshades, nuts, & eggs, as well as grain, dairy, & legumes), etc. 

I had Kaiden grain & dairy free about 5 months before the seizures stopped just simply because I'd read that with Down Syndrome, he was more likely to be gluten and lactose intolerant.  He was not legume nor nightshade free at that time.  It was solely dependent upon eliminating nightshades (and the carrots & sweet potatoes as discovered early on) that eliminated his seizures. It wasn't until seeing that Kaiden needed to be grain, dairy, AND nightshade free, that we went whole hog, so to speak (and yeah, slightly pun intended) with paleo.

I just don't want anyone out there thinking I'm claiming that "going paleo" cured his seizures, because I'm not, and I never have. There are many different versions of paleo.  Many are NOT nightshade free.  Carrots ARE allowed in all versions of paleo, yet Kaiden is sensitive to them.  Some say sweet potatoes are okay to eat as well on paleo, and some say they are not.  Kaiden is sensitive to them.

Kaiden is almost on the auto-immune version of paleo, with the exception of nuts.  He does just fine with nuts.  He is sensitive to eggs, too, so he gets limited quantities of those - and only if they are mixed into something else; he does not tolerate them by themselves.

NRHEG Star Eagle: A Christmas Story of Love and Hope

We've been featured again!  I graduated from NRHEG, so this is the "hometown" paper, the NRHEG Star Eagle. :)  They did a fantastic job with this article - while I was immensely pleased to be featured in our local town paper & magazine, they did get a lot of the details incorrect so this has been a chance to get it out there, with the "right" story!

Please click to read:

Featured in the 2013 Christmas Edition of the 

NRHEG Star Eagle:

A Christmas Story of Love and Hope

 

 

Kaiden's current supplement list

It's been awhile since I've updated Kaiden's full supplement list here on the blog.  Keep in mind, this is what we're doing right now at the time of this writing - we're in the midst of some testing so things may change.

Kaiden is still getting:
Powdered kelp once every 8 days or so
Dr. Christopher's Kid-E-Mins (plant based)
Dr. Christopher's Kid-E-Calc (plant based)
Dr. Christopher's Kid-E-Trac (plant based)
Vitamin D3
CoQ10 (ubiquinone)
Citicholine
Taurine - recently reduced his dosage based on bloodwork, seeing if we still get the same results
L-theanine
Digestive enzymes - bromelain free

We are almost out of the ubiquinone, and the ubiquinol version of CoQ10 is supposed to be more effective.  To be honest, I've never seen any improvement with the ubiquinone, so we'll have to try the ubiquinol - but it's expensive!!

We recently did an amino acid panel, a fatty acid panel, and are currently awaiting results from the latest GI panel.   The fatty acids came back all good, but with the recommendation to try curcumin for metabolic inflammation.  Still researching what kind I want to try with him - most people recommend Nutrivene's Longvida curcumin because it's been shown to cross the blood-brain barrier, but there's several companies making bio-curcumin now, so there's lots to choose from. While turmeric isn't supposed to be quite as effective, I used to give it to our senior rottie, Carl, and it did wonders for his arthritis.  I can always try that in the meantime with Kaiden and see if we have any results. 

The amino acid panel showed Kaiden was a little high in taurine, so we reduced his dosage for now.  He showed low (near the bottom of acceptable range, but not below) in l-tyrosine, glycine, and threonine.  His osetopath recommended to giving him glysom and l-tyrosine. 

Right  now I'm waiting for the GI results to come in and to see if we need to run another CBC before making any additional changes.