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!

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!