How is she?

Shame on me - (You're right, Mrs. C!) I haven't posted lately about HOW my NBear has been doing! So, since I am the queen of enumeration...and okay, I have little SBear comfy in the crook of my left arm, which doesn't allow for thorough keyboard usage...allow me to enumerate, and forgive me (regular readers) if all this sounds uber-repetitive:

1) This week marked week 4 of chelation. She gets her DMSA suppositories on Friday and Saturdays right before bed. The only physical reaction we see is the increase in her nosebleeds. Dr. Mielke said it wasn't caused by the DMSA per se, but by the fact that she was losing Vitamin K in the process. She now gets drops as needed. Yes, they've helped :)

2) Her language has definitely increased. Indeed, it has. Of course, I don't know if chelation is the sole factor for this monumental moment - being that the poor kid has more meds than her grandparents will probably have to take in their lifetime! But yes, even skeptic-at-times mommy has to admit that she has made major gains in this area: she now asks a lot of questions (albeit simple ones), she can answer questions a lot better than she did a few months ago (still working on the "why" ones, but she has been doing well with "what happened?" *biggie!!!*) She plays a lot more with sister MBear, and their conversations are both hilarious and heartwarming:) *must post dialogue one of these days, when I am not suffering from heavy-baby-on-arm fatigue* Perhaps the biggest language aspect I've noticed is her ability to generalize her "tv talk". For example, if she's quoting a Dora the Explorer episode, she will replace a character name with MBear's name (*lol*) or change an animal in the "scene" to something she is already holding - a stuffed animal, another toy, an article of clothing, or mommy's beloved digital camera.

3) A is for AWARE. Now this...is...huge. She is now our official town crier. She reports all things - from MBear's potty training mishaps (Mommy! MBear is poopoo upstairs! Upstairs! One day she simply carried her out of the playroom and plopped her in front of us - I suppose the smell got unbearable at that point), to SBear's adventurous streaks (Oh no! SBear is going up the stairs!). She has also been great at reminding us to do things - the other day the Huz forgot about the B-12 shot he was supposed to give her, so she took matters into her own hands (don't worry, this doesn't get ugly!) and took the syringe container out of the fridge drawer for the Huz to see! :)

4)...and D is for DISOBEDIENT. Oh boy. I don't know if it's the regression moments often associated with chelation (It is generally expected that while the child is taking the chelator, the "on" days, the child will experience some regression as the metals move through his/her body, altho some parents do report that their children actually do better on the "on" days than on the "off" days. Then the first "off" day, the remaining free-floating metals will re-bind into the body, so that day can also be problematic for the child, and for some children the first "off" day is actually the worst day. If the child is not improved after the first "off" day, after the first 2-3 rounds, you would reassess the protocol to determine if perhaps you should choose a different protocol. If your protocol includes ALA, also consider that your child may have developed a yeast issue. *taken from this*), or simply that she is now actively aware of how to test the waters of our sanity - but either way, NBear can be a pill! (I say yes! I say yes, Mommy! or No! No veg-a-bols! I don't want the veg-a-bols!) *ugh* The "good" thing is, I'm not even considering her autism as a factor in that statement.

Okay.
Kid-on-arm-fatigue is at its peak.
Later!

on hold :(

*sigh*

Poor, poor NBear got so sick this week. It started as a high fever for a few days, and then the doc told us it was the dreaded strep-throat. *sob*

She is now on antibiotics for 10 days (thank goodness she can take pills - her biomeds program has been giving her a lot of practice!), and - as per Dr. Mielke - we will have to stop chelating until she gets better.

I am more horrified at the fact that she has been getting really bad nosebleeds for the past 3 days. Nosebleeds run in my family (along with the much-envied bad tempers and OCD), but this is crazy! NBear's nosebleeds are like Morton Salt's motto: When it rains....yup, you know the rest! They can easily last between 5-7 minutes, at the least. "Nose is bleeding" was an easy phrase for her to learn.

I'm hoping this bloody episode is not a result of the DMSA in our chelation program.
Really, really hoping.

mainstreaming and other updates!

Check out this super-cute message from NBear's mainstreaming teacher:

(sent via email)

MommyBear, She did fantastic on Friday also. She and I have a system where every time she lies down or rolls on the carpet, I count to 3. She gets up immediately after I count 1. Also transitioning, she does well with numbers. She had a spelling test on Friday and was able to follow. Of course, thanks to NBear spelling it out everyone benefitted. :)

Mrs. MT

Spelling her words OUT LOUD?
Whowudda thought?........*wink*

*deep breath* Now that I'm here in update land, I've decided to enumerate the ongoings of the last few days for ease of mind (on my part), and ease of reading (on yours):

1) the whole suppository (DMSA - chelation) deal went surprisingly well last night! She kept still enough that administering it was a success. I followed the directions and had her lay on her side, with her knees to her chest. Huz kept her occupied by reading her favorite Dora book with her. Now (as is always the case, it seems) we wait for the results after we send the test out on Monday. *happy thoughts and prayers needed here*

* I have to add that it was SO MUCH easier to do this challenge test because we only needed to take her first morning urine sample (since she slept through the night). That sure as heck beats having to follow her around for 6-8 hours, like a desert nomad collecting water.*

2) Next item on the agenda - the antivirals. Important note on Virastop, Acyclovir, and OLE: hang in there, guys! Trust me when I say that I actually had thoughts of giving up because NBear had become so different in the past 3 weeks- irritable, defiant (very!), apathetic, hyper - and I was so mad at the possibility that these meds were making her worse, and would KEEP her like this. She was also back on Diflucan at this point. The last three days have been the light at the end of the tunnel, though. So, you can make your appearance now, Mr. Sigh of Relief. :)

*She did have a mild rash on her back and upper thighs, which most people (including the Huz)would probably say is viral die-off. It looked a lot like eczema to me, but who knows? After a few scratching sessions, NBear seemed fine.*

another appt, another round

Saw Dr. Mielke yesterday afternoon, and the DMSA test we gave NBear a while back was not as successful as she had hoped. Are you kidding me? All that pee collection for THIS? She said something like, "It didn't show a big 'pull'", which basically means it didn't do a good job of extracting a large amount of the metal toxins in NBear's body. *feel free to gasp for air here*

So now what?

"I'd like to do the test again."

I felt the color drain from my face. Sure, the Huz mentioned that NBear had thrown up a little bit during the testing period (I swear, it was just a little - I personally feel she didn't lose any of the DMSA's effect) which then led to Dr. Mielke's concern that some of the meds must have come out, thus affecting the level of chelation.

"You mean...you want us to give her the tablets again? Where would we be right now if the test results showed a good pull?"

She said we'd be looking at scheduling a chelation program for NBear, according to what our financial situation was. So you mean you also have a program for "broker-than-broke"?

I'm sorry, but I wasn't happy with this appointment at all. I know, I know - Dr. Mielke doesn't write up the test results herself, but something just irked me about how all this was being handled. First of all, if the kid THREW UP because of the tablets, why would you want to try that route again? I didn't have the heart to see her go through that, even if it was just a tad. Second, I was not about to shell out major bucks for another follow-up appointment just to hear the same thing! So...I did what i thought was best.

I suggested we try another route.
Suppositories.
Yes, suppositories.

Poor NBear, but I just need to know that another route will be better, even if this is a bit invasive. Our other choice would be via I.V., and to be quite honest, I wouldn't have a problem with that either. But our kid and our wallets sure would...

Those stupid metals. If I could, I'd pull an "Inner Space" move and vacuum them out myself.

As always, wish us luck.

*If there are any parents out there who have tried this with their kid - I need you!*

Urine luck! (great title, honey!)

Wow - thanks for your happy thoughts and prayers, guys! NBear took the 3 DMSA tablets without a fight :) Now, I must add that they really didn't smell as sulfuric as I thought they would - I was even brave enough to take a brief whiff of the powder when I opened the capsule.

And ok - maybe the reason she was fine with downing them was because I DROWNED the powder in Cherry flavoring, and the "huz" shot the liquid in her mouth via syringe. The kid didn't even have a chance to blink before we both started chanting: "Swallow it, swallow it, swallow it!", like those white-faced voodoo priests before performing a cleansing rite. It's easy to recognize when a kid hasn't swallowed, anyway - their cheeks are ballooned, they don't breathe properly, and they refuse to take a swig of the "chaser" you've provided for them. (In her case, it was pear juice.) So, the chanting contined until all was well.

Now, we begin the pee portion.

We're supposed to collect her urine for the next 6 hours, right? Step # 1 is to lock the other bathrooms in the house, giving her access to only one. (thereby eliminating any missed samples) Step # 2, is to put a clever medical tool called a "hat" in between the rim and base of the porcelain throne. It is truly a lifesaver when one needs to collect both urine and stool samples. Wanna join the club? :)

....more later. Lunch calls.