Friday, January 16, 2015

Jan 2015

Posts are getting hard to title.  They're all updates.  Maybe it just makes sense to put the date.

News:  Kaiden can now use his speech device to say a few FULL sentences (regarding food!) by himself.  Mostly he needs to hold my hand in order to touch the buttons he needs - hey, whatever works. :)  And the speech device is now 100% paid for, so that's pretty awesome too!

After an IEP this week, where concern was expressed about Kaiden not being able to isolate letters and the words "low IQ" and "I know you think he can read, but . . ." came up . . . let's just say I wasn't a happy Mama. Remember with motor apraxia, if the thought originates in his head, he can point to what he wants.  In order for Kaiden to be able to point to what YOU want him to answer, he needs support under his wrist.  So yesterday and today, I set him up with flashcards and asked him to point to things.  He could do it, all of it, as long as he held my finger in a certain way. I don't mean he pointed with my finger, I mean he held my finger and extended his own finger to point - he just needed that little bit of physical support.  I took seven videos.  Kaiden knows his letters, numbers, shapes, colors, objects . . . no problem.  We even did a few apps, and no problem.  As long as he has that little bit of physical support!  I really don't give a crap if it's an autism thing or a motor apraxia thing . . . he needs that support, and that's just how it is for right now.

Kaiden's total height gain since we started the whole kelp/thyroid thing last Jan= 5 1/8"!  And he's up to just over 32lbs.  And all it turned out to be was managing his sleep cycle in combination with a new supplement (Cellular Energy) for mito function + a low dose of GABA. 

So on to my new thought . . . here we are and it's winter.  By now, Kaiden's lymphedema should be in full swing.  But it's not.  It flared up early - in October.  Treated it with cold laser therapy and it went down in a few weeks.  With the fluctuations in temps, some really frigid subzero temps, his fingers should be swollen and red right now.  But they're not.  So . . . I wonder why?  We recently did another CBC and it showed Kaiden needed methylfolate.  We added it, and noticed it his verbal speech increased a little bit (hey, any bit is good!) but it also brought back screeching.  Sigh.  But . . . . his lymphedema has not returned.  Are they related?  I don't know.  All I could find was this study that asks if methylfolate in combination with another medication causes lymphedema.  Well, being as Kaiden reacts opposite to so many things . . . is there a remote possibility that he needs methylfolate to keep his lymphedema at bay, or is this just a coincidence??  Who knows.  Something to keep on the back burner and watch this winter and in the coming years.

And the best news for last: on Dec 17th (if you remember, it was December 17th, 2009, that Kaiden said his first and last word, Mama, before the seizures robbed him of his speech), well this December 17th 2014 Kaiden began imaginative play!  He's been playing with trucks, trains, dolls, and even doing some imitation activity!  I can't wait to see what this year will bring!


Sunday, December 28, 2014

A guest post :)

I did part of a guest blog post over on Down Syndrome: A Day to Day Guide. The first half of the article is regarding seizures, our part is about half way thru! 

Seizures in the Down Syndrome Population: Information and Natural Treatment

Wednesday, December 24, 2014

In the news again! :)

Here is the news interview update on our fundraiser for Kaiden's speech device!
KAAL TV 6 ABC News Interview

Saturday, November 1, 2014

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!

Friday, September 26, 2014

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.

Wednesday, May 28, 2014

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!!

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!