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!


Heather said...

Hi Anne! I have a quick question. Could you please email me when you have a free moment? Thanks! Hope to hear from u soon. :-) xoxo

Anne said...

Hi Heather, can you leave me your email address?

Anonymous said...

Have you read the book Enzymes for Autism.
I have a son who has myoclonic seizures. .. And he is on the keto diet. No anticonvulsant. It has definitely helped. . But I'm ready to try something else in addition and I read your blog a year ago. Was reluctant to try giving up tomatoes first. Although I refused to try the medication too.

I mention the enzyme for autism book. . Because I also enjoyed the Kaufman book. .. And I give me my son the enzymes that the mom who wrote that book suggested. I felt they made a huge difference.

My email address is if you want to discuss further.

Did you have antibodies to rubella? Were you giving a booster while breastfeeding. . I was.

My son doesn't appear to have autism per se.. But there was some loss of ability to pronounce certain sounds. . . And behavioral changes. . A closing in on himself. . Before the diet. The keto diet has helped a lot.

Anne said...

I haven't read (or heard of) Enzymes for Autism. Kaiden is on digestive enzymes - we have to make sure they are bromelain free, even the tiniest dusting of any OTC bromelain doesn't work for him, yet he can eat all the pineapple he wants - but I can't say the ones he is on are making a huge difference.

I probably do have antibodies to rubella, I'm not sure?? I was vax'd (for that) as a child, but haven't vaccinations for many many years - except the tetanus shot received about a day after his birth (because it had been more than 10 years).

We don't do specifically keto, but paleo isn't too terribly far off. It's the same foods but without the specific measurements.

Possibly watch out for carrots and sweet potatoes, too. And with the nightshades - they are used in SO many foods, even things you wouldn't think would have them! If you'd like to try eliminating them completely, watch for potato starch, modified food starch, natural flavors, spices, spice extractives, etc.