November 2014 update

Lots of new things going on!  We've had the speech device for 3 weeks now - the afternoon it arrived, boy did I get a lot of hugs from Kaiden!! Yeah, I teared up a lot! Now, he runs to the device when he wants to talk.  Or he'll occasionally bring it to me to talk, which is the eventual goal. 

I didn't get much of a chance to play around with programming the two loaner units we used, since they were kept at the school.  The one we were able to purchase (thanks to all the generous people that donated to our fundraiser!) is the Accent 1000; I didn't know it came defaulted to the Unity program rather than the LAMP program we'd worked with previously until just a couple days ago.  We had a meeting with a manufacturer (PRC) rep on Thursday, and she was able to show us side by side differences between the two programs.  They are very, very similar with Unity being the original, and LAMP being the evolution of that program. She then set up our device with the LAMP program, and as we talked about Kaiden and how far he's come, she suggested we skip the first and second stages and go right to the full blown, 3000 word program - which means a bit of re-learning for him.  The (touch screen) buttons are all still in the same place but now he needs to touch the first screen, and depending on what he selects, that brings up a related secondary screen (which can then bring up more screens, etc.)  I know he "gets" the two-screen approach; when he picks out what music he wants to listen to (on my PC), he touches the artist first (I click on the artist, it brings up their albums), then touches which album he wants.  This device is just so cool!  We can customize lists for whatever we want to work on, like a vocabulary builder, or simple things like a customized snack list with his favorites. 

I think we originally misunderstood how to teach him to use the device.  It starts with one-word access, and we did that to teach him the meaning of words, assuming he didn't know them (well, I thought he knew them but this was the recommended starting point), and also to get the motions associated with the word - both where the word is on the device and actions like "go", "in", "out" etc.  Here I and his SLP thought we'd just keep slowing adding more one-touch words - but with the rep telling us Kaiden is ready for full access based on the progress he's already made, we took the leap and went for it.  I'd also previously been told to not let him play with it; that too many words would overwhelm him.  The rep said, no, no, no! Let him play with it and get familiar with it!  He'll touch a bunch of stuff a bunch of times but he'll be learning as he does it.  It will still be months and months of training, and we have to learn how to use this program, too!

Next up - growth!  So far this year with the supplement changes (GABA + Cellular Energy, and managing his sleep cycle to calm his adrenals), Kaiden has grown a whopping 4.75"!  Considering he didn't grow much at all the last couple of years - this is great!!  As his doctor said, he might still be below the charts, but now he's following the growth lines which is fantastic!  As of last night he's up to 31.5lbs.  He is now tall enough he can put his snack plate in the sink when done and he feels confident getting in and out of the bathtub on his own.  He no longer uses a booster chair at the table, and can climb up into the chair by himself! With motor apraxia, climbing has been an issue (well, using his hands to assist climbing), and I'm looking forward to him being able to get into the carseat by himself. His head is still very small (hey, so is mine!) so we have begun cranial osteopathy to encourage head growth, reshape his flat spot (from how he slept as a baby) and to widen his palate.  The goal is to widen it enough so he won't need a palate expander!  Completely possible!!  I am really excited about this because palate expanders are expensive, and with Kaiden's oral sensitivities, he'd HATE having it in his mouth for months.  He already has one adult tooth in the spot where he was missing baby teeth, and this one adult tooth is pushing his baby teeth around.

Balance - one of the reasons I love being on the Review Team for New Age Mama blog is getting to try out products free in exchange for an honest review.  The latest item I was able to acquire for Kaiden is a Strider Balance Bike, the 12" Sport.  It's recommended for ages 18 months to age 5.  Kaiden is 5 1/2, but the size of a 3 year old so this works out nicely.  Balance has been a major issue for Kaiden all his life - made considerably better with one of our earlier Dr. Christopher tinctures (the Ear & Nerve Tonic), but not yet where it should be.  It took a few tries, but Kaiden has now mastered the first stage with the bike, Standing/Walking (and running!) - next up is Seated Walking - and I think he would have done that today, too, but we set the seat just a wee bit too high, so will be fixing that.

Eating - it's been a long three-year battle, but Kaiden is now 95% fully self feeding.  FINALLY.  He still does not hold the bowl to stabilize it with one hand while eating with the other. He does need help rounding up the last couple of bites (thanks to not holding the bowl!) but we'll get there.  Eating meals is SO much less stressful now.  I actually get to eat hot food. And use both my hands if I need to!  Or, if I'm not eating at the same time, I can get things done while he eats!

And, thanks to applying some of the principles from the SonRise program, I think Kaiden is mostly "recovered" from autism, with the exception of imaginative play.   I think he'd relate to other kids better if he could relate to how other kids play.

With all the changes this year, Kaiden has really blossomed.  I can't wait to see what next year brings!

We are SO close!!

Here it is, just after the beginning of the new school year.  I was hoping Kaiden would have his new speech device already - in fact, the original plan was to work with it over the summer so I could gauge whether or not he's ready for kindergarten.  We are very close to getting the speech device - it's been a long battle with insurance, too, as they gave us incorrect information for over 6 months - even with me explaining Kaiden's story every. single. time. I called to see where things were at.  Just earlier this month, BCBS (finally) let me know that the speech device manufacturer (PRC) is an out-of-network provider, meaning they weren't going to cover the amount above deductible . . . gee, it would have been nice to know that back in December of 2013 when I first called BCBS to see what we needed to do!  So after explaining Kaiden's story yet again and again (and again!!) BCBS pushed thru a waiver to pay PRC as if they were an in-network provider.  Okay. Then working with PRC, as they typically get paid up front - PRC was able to meet us in the middle - make a $5000.00 downpayment, and then get billed later for the remainder of our deductible after BCBS pays their portion.

So, fundraising needs met, transfer to bank complete, transaction pre-approved at the bank - all my ducks are finally in a nice neat row . . . I call to make the payment . . . and receive no call back.  Oh I get it, people are busy or take sick days or whatever - but it's just another little speed bump in this VERY long journey.  Head-desk.  Hoping today's the day!

So . . . where were we at - GABA.  The low-dose took about 2 months to finally push out all the histamine from Kaiden's system.  As of July, he has been completely diaper rash-free.  I bet he's as happy as I am about that!  I did try playing around with the GABA dosage again to see if it would help a few behaviors (Kaiden thrashes wildly when mad) and it looks like 1/16th of a capsule per day is his optimum dosage.  At least for now; things always change!

Verbal speech - as with every other word he's been able to say, it's incredibly rare for him to say "Mama" or any version of it anymore. I am sad about that, but it is what it is.  He seems to keep a word for a month, maybe two before it slowly disappears.  But the good news is, his fine motor skills have FINALLY!!!!! improved enough he's begun signing back to me!  We've tried sign language since he was 6 months old, on and off.  Imitating purposeful movements has been a huge obstacle for him.  He's now up to 8 signs he can repeat.  A few of them are not entirely correct (and we're still working on correcting them) but at least I know what he's asking for now!  We have been using word/phrase cards - just the word/phrase on a piece of foam board - and if he can't sign it, he will bring me the word card.  He *can* put 3 signs together to make a short sentence by himself without prompting, but it usually takes prompting or he'll just do the main word.

Growth - thanks to the Cellular Energy + low-dose GABA, he's still growing!  From the beginning of this year - with the growth spurt from messing with his kelp & thyroid and now the Cellular Energy & GABA, he's grown 3 - 4" in height and 4 shoe sizes. It almost feels weird to buy him new clothes as he fit into the same clothes for so long.  It still feels weird to pick him up and FEEL muscle tone on his little body.

I've introduced a few simple things gleaned from Raun Kaufman's book, Autism Breakthroughs (about the SonRise program) and it's really helped - I mean REALLY helped!  Kaiden's eye contact and social interaction is so much improved.  He wants to play with me all the time!  He doesn't run off as soon as we're outside.  The only thing I can still see is that Kaiden does not do imaginative play.  He reads, he loves hanging out in the boat while we fish, playing with toys or any object that make lots of noise, and toys/things that have lights, but just does not do imaginative play.  He likes to watch videos about imaginative play, but doesn't, as far as I can tell, do it himself, so he coupled with being non-verbal, he has a hard time relating to kids his age. 

Kaiden's doing another year of preschool this year, and we're hoping he'll be ready for inclusive kindergarten next year.

Almost the end of the school year!

And I still haven't decided whether Kaiden will attend another year of preschool, or attend kindergarten.  Right now it's set at another year of preschool, but they all know I may change my mind. 

Kaiden is doing FANTASTIC with the LAMP (loaner) unit at school - last session he spontaneously used it to say what HE wanted to say.  It was . . . one of the best sessions ever!!!  Kaiden had already selected which activity he wanted to do (have a book read to him), and as the SLP and I were chatting, Kaiden kept looking at me and used the unit to repeatedly say "Mama, read" to get me to shut up with the chatting and get on with the reading. Later we changed activities to blowing bubbles (he has to say "bubbles" or "more bubbles" to get the SLP to blow bubbles), and HE said "Mama bubbles" and giggled when I blew bubbles instead of the SLP.  Then as he grabbed at the bubbles to purposely pop them, he kept saying "my" and "my turn" - the closest he could come to saying "hey, look at what *I* did" because we don't have a lot of the buttons activated.  Slow going to build up his vocabulary when you only get two speech therapy sessions per week and there's been a lot of missed sessions in there due to either sickness or scheduling issues - both on ours and the SLP's end.

We are currently at almost 74% of our fundraising goal - how awesome is that???  SO MANY caring people have generously donated to help Kaiden get his own device!!!  We are still waiting on the insurance company, after 4 rounds of submitting paperwork and having the case escalated . . . still no answer.

On to the cortisol testing - had to collect his drool/spit at 4 specific times over the course of 1 day.  The first one had to be within 1/2 hr of waking.  He's just not very drooly that early - so we tried to do the gauze in the mouth part . . . not fun.  The other collections were easy - he loves to chew on his hands while holding a MegaBlock upside down, which makes a fantastic drool collector!  Just pour into the test tube and there you go.  The results took awhile to come in, and it was really neat to see the graph that came with it showing his levels for the 24 hours.  Definitely correlated with his activity.  He's restless at night, not getting anywhere good enough sleep, and does NOT sleep during the day.  Our current thought (medical team included) is that he's basically stressed all the time, like PTSD, so that's why he eats like mad - since his body is stressed from not getting any good sleep, his metabolism is thru the roof - he just burns right through food, which doesn't leave much nutrition left for growing.  Having the adrenals off balance will affect the thyroid (see the whole kelp issue a couple posts back), so we are opting to see if we can adjust his sleeping pattern.  We adjusted his supplements a bit - found  his tolerance for the new Cellular Energy supplement - he slept even less with this supplement, so I thought, since the Cellular Energy introduces more amino acids, let's try removing the Theanine.  THAT worked.  He finally slept thru the night for a few nights in a row!  YAY!!!

Since we now had a system that worked, then I thought, okay, this is the PERFECT time to reintroduce the GABA.  We'd tried GABA a couple years earlier - it made him frustrated, angry, and sleepless, but for some reason it cured a food-related diaper rash we'd been fighting for months.  It stopped the diaper rash for a year and a half, and slowly crept back.  I had been wanting to reintroduce it to see if it would kill off the rash again.  (His team says the GABA can push out histamines, so it's possible Kaiden had a histamine buildup, and the GABA pushed it out, thereby killing off that rash.) I thought it might take 3 days or so, like last time, and I could deal with a frustrated angry child for a few days.  I tried it at a lower dosage though - about 1/4 capsule.  When we first tried it last time, we started at a full capsule and went lower and lower and lower to see if that would help with the anger, frustration, & sleeplessness, which at that time, it didn't.

And . . . instead of having an angry frustrated sleepless child, Kaiden became even more connected!  He didn't sleep as well though, so I tried lowering the dosage to between 1/16th and 1/8th capsule.  THAT worked!  He's so connected it's like having a completely different child, than Kaiden when he was off the kelp.  Total 180.  It's as my best friend says about typical 5yr olds, it's like at age 5 they grow a brain and start to behave!  He is just . . .amazing.  At that low dose however, the diaper rash is less but not gone.  Hoping that continued use of GABA will eventually do the job.

Before starting the GABA, but after starting the Cellular Energy - Kaiden gave me the BEST Mother's Day present EVER!!  He started saying "Mama" with intention!!!  It sounds more like "ah-ma-ma", and he can't seem to do it loud, it's very soft, but he's saying it appropriately to get my attention!  The tradeoff though, seems to be that he's lost all other consonant sounds for the time being.  Now, the only thing he says is "Mama" (or some version thereof) and very few vowel sounds.  Nothing else.   But, hell, I'll take it. :)  I don't know how long he'll be able to keep saying it - he has spontaneously said a few words here and there, one for about a month, then gone, not repeated in years.  I keep encouraging him though, telling him how much I love to hear him say "Mama".  Going back to the last post with Raun Kaufman's book - the Son Rise program approach really DOES work!  Kaiden's eye contact and social interaction is sooooo much better!  I can't say it was only the approach, or only the supplement change, I think it's all of it combined.  Either way, this Mama's a pretty happy camper!!

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.

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!

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.