A sassy, crafty mama bird from Los Angeles
raising a very sweet little girl with Autism
and a new baby boy in the Midwest... and other stuff, too.

Sunday, December 19, 2010

So what's the plan?

"I know more than I knew before
I didn't rest, I didn't stop"
-Feist

I know I kinda left everyone hanging with the whole trip to New York, but I've been a little bit busy and overwhelmed since we got back. So, here's the deal...

The first thing Dr Bock asked us was why we were there and how he could fit in to our journey. I was very clear about our mission: we're looking to help Little Bird reach her utmost potential. Because she has been developmentally delayed since the start and wasn't a kid who regressed or was vaccine injured, I'm not trying to restore anything or to heal anything per se. Instead, we want to make sure she's getting everything her system needs to function properly. After looking over all of the bird's test results, including the metabolic markers, he came up with a omg crazy insane frighteningly long list of supplements and vitamins to add to her diet. I knew it was going to be a lot, but I didn't know just how much until the package arrived a couple days ago...
This isn't even everything!!!!
Some of those things need to be given three times a day; most are twice a day; only a couple are once a day. Please stand by while I finish hyperventilating. I ordered the B12 shots yesterday. I'll start giving those every three days. In a few weeks, she'll start a month-long course of vancomycin (antibiotic used to treat bacteria in the gut) and nystatin (anti-fungal used to treat yeast in the gut).

Everything needs to be kinda scientific, so I will introduce them one at a time. Then, after three days with no reaction (I hope), I'll add the next supplement. This is all to be done in a very particular order. 
Here's the chart I made to keep track of what I give her every day and in what order. 

Pretty intense, right? Not gonna lie, I cried for a couple hours after creating this chart. 
Really overwhelming.

This week I collected poop samples three days in a row. It's hard to decide what's crazier: the fact that a spoiled jewish girl from the valley is totally okay mixing poop in different solutions in her kitchen and then sending it via fedex to a lab, or the fact that Little Bird pooped three days in a row. A few days ago, LB and I both woke up early, so I decided to grab her and head over to the hospital to draw the blood that Dr. Bock ordered. I had no idea it was gonna be 12 freaking vials full of blood. Gregory said she looked really pale when we got back home. Poor bird. I also had the lab spin a vial to separate the plasma and the serum so I could bring the vial of serum back home to be frozen and sent off to another lab. Never a dull moment. 

Because I'm realistic, I think that the bird will probably react negatively to some of these supplements or have a die-off like effect, so I'm choosing to wait until we return from our trip out to California. I'll wait until we are back home, in our typical routine, in her safety zone. I'm not much looking forward to this. I know it will take a long time to get used to all of these new supplements; it will be frustrating to see negative reactions and/or no reactions. I am trying to remain hopeful and optimistic. I do know that Dr. Bock will help us and that Little Bird really will thrive, it's just gonna take a whole lot more work on my part to get her there. 



15 comments:

Penny said...

A word of caution - introducing s new supp every three days may be too much: Li'l Bit reacts to some things on days 4 and 5. I'm not a big fan of a introducing new supps that quickly.

Dani G said...

Thanks, Penny. Excellent point. I will definitely keep that in mind and think about going a bit slower

Piscesgirl said...

Best of luck to you with all of it. I agree and would maybe wait a week in between adding each new supp. I feel for you girl, but if anyone can get it done, it's you! xoxo~Darla

Heather said...

Oh I know that overwhelming feeling! This isn't going to sound hopeful but I still feel overwhelmed three months after we started our new regimen! I know you'll do great though- and my fingers are crossed for lots of great progress for LB!

Alysia - Try Defying Gravity said...

I wish you the best of luck and look forward to reading about your progress here. This post is just another perfect example of what an amazing mom you are and how dedicated you are to your daughter's success :-)

Cheryl D. said...

Wow, I can't even imagine! There's so much to do!

I'm very hopeful we'll be hearing excellent news once everything gets going!

Penny said...

I thought of something else. When we began B-12 injections, it made Li'l Bit extremly hyper. She skipped all over the place, in the house, outside, just skipped and skipped and skipped - almost as if she could not sit down. That hyperactivity did settle down - but it took a while - you may need to wait even longer than a week to add the next item when beginning B12.

Anonymous said...

What wonderful people you all are to send such great advice and love to Dani and LB. I know Dani appreciates your interest, and as her Mom, I do too. She is a special Mom, and all of you are doing a good thing encouraging her. Thank you for that. Mom

Penny said...

Hi Dani's Mom and LB's Grandma!!!

I don't know what I would have done without moms ahead of me on the Autism Pathway - they were so helpful - they still are. The community is wonderful. It's not a community I would wish someone into, but it *is* a good community once you find yourself here.

Deann said...

For awhile i'd also add a check off column to your chart, so you can check off as you give to her, and the time. That way you know for sure she got it, and also can help to determine any weird reactions. Just a thought!

Dani G said...

Thanks "anonymous" if that's even your real name.

Penny, don't know what I'd do without you, sister!

Deann, that's my plan! There's no way I could keep track otherwise!!

Lynn said...

Good luck with everything! I've so been there. I'm always unsure how fast/slow to go, and I'm always pretty conservative. As meticulous as you think you're being, it's still hard...like when the dr tells you to ramp up slowly on a given supplement. So should you introduce a new one every 3 days even if you're not ramped up to the full dose of supp #1? I find it very difficult to connect the dots between a certain behavior/reaction/side effect and a supplement no matter how conservative I think I'm being.

But you've got great instincts, so I'm sure that you'll do great. We did not have good luck with B12, and unlike what Penny said, Dr. Bock told us to stop them and not stick it out to see if it got better. Just keep his number on speed dial!

Christine M. said...

Wow.. My son passes through Dr. Bock's neck of the woods every day on his way to school and we had never heard of him. Though I must admit hubby is very leery about all the supplements etc. as years ago we had some pretty unpleasant experience with alternative options. I hope you have great results and now I will go ponder again if there is more we should be doing...sigh....

JennieB said...

Looking forward to hearing how everything works for you. We've resisted going this route but it nags at me often. If there is something else to try, shouldn't we just try it? My husband thinks no. I'm not so sure. Good luck. It's overwhelming but you can do it!

Laura @ The Things I Said I'd Never Do said...

Wow. I know you must feel totally overwhelmed and I give your mad props for going with it anyway. I wish you all the best and hope this leads to the right path for your Bird.

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