Tuesday, August 24, 2010

Ramblings for the day

The endocrinologist has determined that Kaiden's throid levels are completely normal for his age.  YAY!!  Not that I had any real doubt . . .

He has started to get into another 4-point position - this time with his feet, not his knees, with his little butt up in the air.  He hasn't figured out how to move in that position yet though.  It's so much fun to watch him inchworm himself to his toys - and under them.  This morning we practiced putting wood blocks into a bucket.

Here's the continuation of the list of accomplishments - last posting was for 7/19.

7/22/10 can pick up wooden blocks and fling them

7/23/10 consistently grabs for sippy cup on table during mealtime when he wants a drink

Now grabs handfuls of food out of the bowl and waves them around.

7/25/10 Opens mouth now when grabbing handfuls of food, gets much closer to his mouth before dropping it.

7/27/10 loves to pick up and examine his books

8/3/10 can army crawl in a circle, pivoting on belly

Brings food right to mouth and tries to get it in mouth now

8/6/10 took several unassisted giant alternating steps forward while the PT held him upright.

Can now “inchworm” to get toys out of reach.

8/13/10 purposely putting objects inside something. In this case, his wooden blocks into the base of the excersaucer. Now can put them into a bucket.

8/20/10 straightens legs and puts butt in air while in rocking 4-point position.

8/23/10 flinging blocks ahead and inchworming after them

Exploring his environment, not just his toys & books


I must admit today that I am disappointed.  I contacted a couple more places to talk about the benign myoclonic seizure/nightshade foods connection, and although I was delighted that one party responded and was interested, they didn't seem very interested.  Basically a "we'll keep an eye out if ever somebody else mentions it too".

Well, that's kind of my whole point, isn't it??  To mention it to others to see if they will try it?  If they don't know and nobody ever tells them, how can they try it?  I feel like I could have stumbled on an amazing medical discovery here and the western medical world just.isn't.interested. 

Should I be suprised about that?  After all, this would be a monetary loss for the pharmaceutical industry.  No anticonvulsant meds.  And a loss for the doctors, because if this works, and their patients don't need meds therefore developing no side effects that need to be monitored, and well, then they lose a patient.  Maybe this just seems too easy, too good to be true.  I didn't go to medical school, therefore I should not ever have figured this out, right?

All right, enough of me complaining.  On to cooking!

Tonight I made beef stroganoff - not in the traditional way, but definitely just as tasty (or in my opinion, better!)  I substituted olive oil for butter, coconut milk for sour cream, skipped the paprika, and served it over shredded fried zucchini rather than rice or noodles.  Oh soooo gooooood!!!!

Friday, August 6, 2010

one giant step for mankind . . . or is that Kaiden?

Today Kaiden took several unassisted giant alternating steps forward while is physical therapist just held him upright.  He decided to do the steps all on his own!  It was pretty funny, he lifted his knees so high he looked like he was marching!  All I could think of was Neil Armstrong, "that's one small step for man; one giant leap for mankind".

Yesterday Kaiden had his 18 month well visit.  It went pretty well; it was very informative.  His pediatrician was very impressed at his recent progress.  She wanted to know if we had done a follow up with the neurologist yet.  I said no, we never heard back from the guy after sending the letter.  She still wants us to do a follow up.  Nick and I don't see the point - we took Kaiden to the neurologist because he was having seizures.  He hasn't had a seizure for more than 2 months since I figured out the whole nightshade thing; his cognitive progress is nothing short of absolutely amazing for an individual with Down Syndrome - why should we waste our time and money for an appointment so they can give us the official "all clear"?  Just more money in their pocket, less in ours.  She thinks we should consider the Mayo Clinic's neurology department . . . uh, no.  I may call them with the nightshade connection information but as far as Nick & I are concerned, no member of this family will set foot in a Mayo establishment for treatment unless it is an absolutely life or death situation.  And even in that event, if we are able to speak, we will request a transfer to Fairview.  We have never had a good experience with Mayo doctors (they almost killed me twice, and I am not kidding about that) so they are not an option in our book.

Back to Kaiden's well visit: his pediatrician was also telling me how the nervous system forms from the head down to the toes.  She was able to witness just how well Kaiden sits upright unassisted and said she could see that his nervous system has now reached his lower lumbar region and that his hips are next.  Which will be nice, since that's the one area left that's keeping him from walking.  The ligaments/tendons are just too flexible yet so he's still wobbly.

Kaiden has lost almost 3 lbs since his 15 month well visit, down to 19 lbs 11 oz from 22 lbs 7 oz.  The pediatrician was concerned, but you have to understand Kaiden used to be pretty chubby and very inactive in comparision to a typical child of his age.  Now that he is very active, he's slimmed down and looks like a normal-weight little boy.  Taking our unique situation into consideration, the pediatrician is less concerned, but wants us to return in 3 months for a weight check just in case there's an underlying condition that is causing him to lose weight, rather than solely his newfound activity level.  I had to laugh though, she asked me to walk her through a typical day's meals and I only got as far as breakfast before she decided I was feeding him good enough!  She also asked about his diaper contents, I assume to rule out that I'm starving the poor child.  He goes through 7 diapers a day.  He also has nice normal solid poop, too, in case anybody was wondering!

I had them do a thyroid panel since he's supposed to have his thyroid tested yearly.  Kaiden was put on Synthroid shortly after birth, but his endocrinologist said he thought the doctors tested his thyroid too early after birth and he probably never needed it. The level rises after birth, then comes back down and levels out and he thinks they tested it before it leveled out.  The Synthroid made his thyroid go the opposite direction, so the endocrinologist took him off the meds and Kaiden's levels evened out by themselves and remained stable.  He has been off Synthroid for over a year. 

Although Kaiden displays absolutely zero signs or symptoms of a thyroid malfuction, the results came back as mostly normal, one level slightly elevated.  This could be due to several things - the choice that seems obvious to the western medical community is the fact he has Down Syndrome, and it is very common in those with Down Syndrome for the thyroid not to function correctly.  I doubt they will look past that unless I step in - which of course I will do!  Among the things nightshade foods can do to a person, they can also cause a copper deficieny.  I did find quite a few links with Google about people's thyroid malfunction in conjunction with eating nightshade foods.  Kaiden has been off nightshades for just over 2 months, and it can take up to 6 months for the nightshade effects to completely leave the system.  Will they bother testing his copper levels?  I highly doubt it.  I will take a stand though - if they want him back on thyroid meds, they are going to have to wait until Kaiden has been nightshade free for 6 full months, THEN they can retest his thyroid.  And I'm willing to bet that his levels will be just fine.

The thyroid level could also be associated with his recent weight loss.  I'm not concerned - Kaiden is one happy, healthy, very active little boy who continues to make cognitive strides.  Am I supposed to put him on meds with side effects to dampen down his newfound activity level?  Yeah, right, I don't think so!

Kaiden also had his annual eye exam - also warranted by the doctors because he has Down Syndrome.  It tested as perfect last year, and remains perfect this year!  I hope he inherited his father's vision and not mine!

More fun to report: Kaiden has now discovered Lola's toys.  She was quite put out that Kaiden has taken her toys!  She gave me the most pitiful look until Kaiden dropped her toy, and then she gently snuck it away from him.

And now to cooking . . . .  The pediatrician thinks I need to fatten Kaiden back up a little, she actually said he's TOO healthy.  She thinks his caloric intake isn't enough for his new activity level.  It's not like I'm starving him - I have tried time and time again to offer him snacks between meals and he refuses them  If the bowl is empty and he indicates he wants more, I make him more food and feed him until he refuses more.
I understand that fat is essential to brain development, but the kid's not gaunt.  He's still chubby - just a normal-weight chubby, not rolls-of-fat chubby like he was.  And with his cognitive progression, he's definitely doing fine!  She asked how much fat I feed him, and I told her I don't cut the fat off his meats, and I save the extra meat drippings from the meats I cook and give it to him just so he gets all the nutrition I can possibly give him.  I cook with olive and canola oil, and Kaiden gets lots of seeds & nuts.  He also gets some avacado every day. I also told her what I've done for my milk supply to make my breastmilk thick and rich rather than thin and watery.  She didn't have much more to suggest except to try to look for some olive butter but that I would probably have to order it from overseas.  Then on the way home I thought . . . I have cocoa butter and coconut oil . . . I use them to make lotion but they are very edible and good for you . . . I can make my own chocolate!  Yummy!!!  Uh-oh, Kaiden could become a chocoholic like I am.  
Now the funny part is that Kaiden must have heard and understood her say he should eat more.  I tell him that all the time, that if he wants more I will happily give him more!  But NOOOOO . . . apparently it takes someone else to tell him . . . because since the appointment his food intake has gone up quite a bit.  What a funny kid!