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!

P is for FALL

Pumpkins:
* went to a Pumpkin Patch on Sunday (weren't very smart and took the girls right after church, so our pics have them in their Sunday best, walking on the dust-and-hay covered "patch"). NBear and MBear had fun choosing their orange friends!

Previews:
Mommybear decided to take preview pics of the girls' Halloween costumes (NBear's FAVORITE day, I assure you!). NBear is Cinderella, sans the blonde wig; MBear is a ladybug (I don't have the heart to tell her she's not a bumblebee); and little SBear will celebrate her first trick or treating session dressed as a purple butterfly. They are collectively - and lovingly - called, My Princess and her Pests. *HAHA*

Now that NBear has gotten over the mountain of sickness that plagued all of us these past two weeks, I'm looking forward to another chelation session this weekend.

Her Vitamin K is never far away, either!

Vitamin K....

...was suggested (by Dr. Mielke) for the nosebleeds. Apparently, with chelation, the wonderful blood-clotting capability our body has is diminshed.

So - add THAT to our list of "have-to-gives".

No nosebleeds today, thank goodness!

...keep bleeding, I keep keep bleeding love!

Okay, now this is ridiculous.

This is Day 4 of NBear's nosebleeds. Something tells me this is not just related to her irritated sinuses, and needs to be addressed. I'm wondering if any other people who've gone through chelation for their child has experienced something similar.

Anyone?

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.

chelation has begun!

Gonna try to keep this as informative as I possibly can, since little SBear is sick (*sad*), and has not left my arms since this morning....I knew my triceps needed help! Also, I am not a fan of one-handed typing!

Okay. NBear is now officially on a chelation schedule, which is Friday and Saturday for eight weeks. Remember how the suppositories worked so well for her? We decided to stick with those, especially since the very FIRST challenge test showed a huge pull in the LEAD department! *I need to find that lab test to show you!* She took some blood tests beforehand to make sure all was well, and will take a follow-up urine test to see if the chelation is doing its thing.

Our concerns right now, of course, are the yeast flare-ups Dr. Mielke warned us about, as well as the possible harm to her liver. I'm so very worried about it all, but am ready in a heartbeat to stop if I see any red lights! My constant mantra is: leave no stone unturned, leave no stone unturned...

She is currently battling a bad cough and cold, which is accompanied by a low-grade fever. Unfortunately, sisters M and S Bears are in the same hole. Not hard to see that their immune systems were definitely compromised after all that traveling. :(

I leave you now with some pics of the island I call home, and my girls enjoying the tropical scenery:

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.*

what the heck is hapenning here?

My NBear seems to have turned into the Tasmanian Devil.

Where is the calm girl we had no problems with when we went shopping? We took the entire herd to shop for a dress (for mommy - there's a wedding on Saturday!), and NBear acted like a child who had ingested 2 packs of chocolate-covered coffee beans! She was sooo not calm. I mean, sure - she was also talking up a storm, using great sentences, and had great eye contact, but all that also came with GREAT (uncontrolled) ENERGY!

Yes, of course the Huz also noticed. The poor guy took her grocery shopping today and came home looking like he crawled out of the bowels of a tornado. Perhaps the recent addition of these guys (pictured below) to NBear's program had something to do with it?:

Dear me. I guess I was in a daze when Acyclovir was discussed between the Huz and Dr. Mielke. I actually AGREED to this? *lol* It's used for herpes! And - did you see all the side effects? No wonder why! *groan* I vaguely remember that he wanted to try an anti-viral program on NBear BEFORE chelation, but the doc was quite reluctant to do so. (Something about NBear's immune deficiency not being up to par until after chelation, but in the end Huz was able to convince her to at least try this "switch" with NBear.) So, hello Acyclovir.

These two were also H-man's idea. He spoke to Dr. M about introducing these, and got her "ok" beforehand. I know some readers (like my new friend) have concerns about starting Virastop, but really all I've seen so far is (I'm afraid to say) ADHD-like behavior, confused behavior at times, and yes - defiant behavior. EVERYTHING is a NO. *granted, I love the sentences, but still:

"No! I don't want to go to school! No! My turn for the computer! No! I don't want to take a shower! No! No! NO!"

Oh - we've also noticed a frequent need to fidget with things - our faces, her father's ears (she had stopped doing that for a while), her clothes, to name a few. Seems like her sense of touch is heightened or something??? *sigh*

Hubby thinks it's the die-off from the Virastop. (he said I could quote him on that, so there.)

I'm just hoping it's temporary...................no matter what it is.

p.s. Dear Cult of Recovery - we are also (as shown in photo) adding OLE to this new deal. :) Nice to know we're in this fight together!

S-words

To date, I am still sans suppositories and sanity. (the latter not being too much of a shock)
Called the pharmacy (love them) and it seems there was some sort of misunderstanding:

*Yes, a prescription for chelation suppositories. Dr. Mielke said she would call it in on Wednesday. [it was now Saturday]*

No, I'm sorry. We haven't received the call yet.

*Wha-?? Really?*

Really.

*Oh. [perplexed pause here] Oh. So I guess I have to call her office...?*

Yes, I would do that! I'm so sorry. (said hurriedly, but with a cheery voice, nonetheless)

...and that marked the end of the conversation. Oh well - it will just put us back a weekend, I suppose. I'm not exactly looking forward to this "experience" anyway. *shrug*

In other news, I gave NBear an MB-12 shot (for the first time) on Saturday. Call it the need for adventure. The Huz took SBear to her "gin-as-tick" class and before they left, I nonchalantly asked him if he had already administered the shot. No, not yet. I smiled to myself as the wheels in my head began to sputter and whir, and asked him if I could do it. His head snapped up when he looked at me. If..you...want to? That was all the push I needed. :)

I soon realized I needed more of a shove than a push.

For starters, NBear was already AWAKE. Huz always did it when she was asleep. (Except one other time, and when the memories of THAT event came back to me, I wondered why I ever decided to volunteer for this) In that memory, we asked NBear to lay on her tummy on the couch. Her constant whining and turning to see the oncoming needle was enough to cause us to heave sighs of defeat. Huz got it in, though, and that was that.

But that was HIM. Calm, patient, easy-going, and STRONGER than me. Enter me (think on-edge mommy with wailing 7-month old at her hip) and it no longer becomes a pretty picture.

me: Come on, NBear - time for "owie" butt, ok? *still wonder why it was an utter success at the get-go?*

NB: No! No owie butt, no!

me: It will be very fast! Very fast! Just lie down he...

NB: No lie down here, no! I don't want to lie down...I don't want owie!

(to read the dialogue in its entirety, simply re-read the above a hundred more times)

Thank goodness I don't have a fear of needles. I do have a fear of accidentally BENDING needles when the subject of your "poke" turns into the human jumping bean.

The bottom line (pun intended here) *lol* is that I DID IT! yes.

When H and Sbear came home, I managed to make everything look like a piece of cake. You gave it already? I thought you were going to wait for me? I waited for the air of confidence to fog the entire kitchen before I replied. "Nah - I managed to do it!"

I know he saw right through me. He managed a smile, though!

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.

I'm okay! Really.....I.....am....

Our minds are so full of information right now, it wouldn't surprise me if brain matter started oozing out of our noses.

Meeting #2 with Dr. Mielke was all about answering our questions (phase 1), going over the lab results (phase 2), and getting the rest of our pharmacy goodies (phase 3) - all in a mere two hours. Needless to say, phase two was my least favorite:

So - she hands us a stack of papers and said they were NBear's lab results. You're kidding, right? - sneered my inner dark self - this REAM looks like the rough draft of the book "War and Peace"! We're going through all of this? Shouldn't you have allotted 6 hours, then? How could 1 stool sample, 1 hair sample, and 3 urine samples have come to this? *side: I must remind myself to post about THAT experience as well! We could all use a hefty laugh.* Alas, all I had the strength to say was, "Oh." Here is what we (hubby and moi) were told, or rather, how we understood what we were told:

*NBear had some serious viral issues - results showed that her digestive tract tissues had some serious inflammation going on

*As for food allergies, our hearts sank when EGG WHITES and YOLK were on her "not-to-eat" list. There go the morning over-easies, the gluten-free cake mixes.....*sob*....also on the list was wheat, rye, cow's milk, and our good friend, gluten. Incidentally, her body's reaction to gluten was so high (she scored a 0.859 on a scale of 0-1!) that Dr. Mielke wondered if the poor child could possibly even suffer from celiac disease. (same link, but look at the 5th paragraph. *lol* Notice the last sentence there? I hope the Pope plans on hiring some people from the "Gluten-Free Eucharist Ministry". Soon.)

*Yes, metal toxins - mercury, lead, arsenic - were still an issue. Chelation was definitely going to have to happen, if we wanted to move forward. I'm not going to lie about my fear of chelation. How can I possibly be 100% FINE when there are things like this and this? OMG. We did receive a test kit - called the Challenge kit - to see if NBear would have a "positive" reaction to the chelator known as DMSA. (I'm assuming that "positive" in this context does not mean happy faces and plus signs, but rather if:

1) she is willing to take the chelator orally, despite the fact that its sulfuric content matches that of a rotten egg...in both smell and taste, I may add. *clearly remembering Dr Mielke's face as she stressed the words "...it...tastes....hooorrrrriiiibbbllleee!"

2) she does not have a bad reaction (a bad reaction to ingesting rotten egg-like powder? Now who ever heard of such a possibility?)

3) it works for her. Alas, some chelators can be picky with the metals they choose to adhere to, and may not secrete them as planned. Let's hope NBear's metals are high on the attractive list .

Would it be so bad to ask all of you who read this to please ask the big G-man (aka J-man, HS-man) to keep her in mind when I administer the test tomorrow? *groan* I'll also have to follow her around for 6 hours after the capsules are taken. Just call me Princess Urine-Collector. *Where's the catheter when I need it?*

***Last Word:
~ Two teary tantrums and one "woe-is-me" speech to hubby later.......and I am fine. really.
Did I also mention that my wallet is now concave? That book idea doesn't sound so bad after all.