Tuesday, July 31, 2012

So much nothing

I've started post after post in my head and can't seem to get past the first sentence.  How do you write about the paradox of lots and lots happening and nothing happening?  (OK, this time I made it to the second sentence before walking away.)  Let's see if I can organize all the thoughts buzzing around in my head:

The Olympics -- How cool are they?  I love to watch the Olympics, always have.  This year, however, my daughter's insomnia does not mean that she likes the Olympics any more than she ever has, so when I'm up with her, I'm not seeing much of the athletes.  This might be a good thing, though, as watching these competitions makes my heart race and my stress levels go through the roof!

Supplements, Part I -- My daughter has been taking supplements since November when we first saw the DAN! doctor in Baltimore.  (Same doctor who set her up on the diet free of gluten, casein, soy, and corn.)  The doctor adds more supplements with each visit, sometimes taking away a few, but mostly with a net increase in type and amount.  Before yesterday's appointment, she was taking eight supplements daily, some once, some twice, and some three times a day.  Twenty-three pills and one injection in addition to her medications.  (Curious?  5-HTP, P5P, Calcium/Magnesium, MSM, Folinic Acid, Tyrosine, GABA, and Methyl B12.)

Yesterday the doctor said to stop taking the Cal/Mag and one of her meds.  He also added three more supplements:  Alpha Ketoglutaric Acid, Zinc (based on her most recent blood work), and Choline.  That takes her up to 26 pills and one shot.  Did I mention that she balks?  She goes through periods of balking, griping, procrastinating, ranting...  Then she'll be all proud of swallowing handfuls at one time.  We even went through several weeks of emptying capsules into juice, at her request, with frequent demands for different juices as suddenly what was once termed "delicious" became "disgusting."

Supplements, Part II -- Yesterday's appointment with the DAN! doctor was for my son, too.  It was his follow-up to all the testing ordered at his first appointment a month ago.  The results are in:  No problems with gluten but high sensitivity to casein.  No milk or cheese for the boy.  He's doing OK without the milk -- we stopped buying it a few weeks ago in anticipation -- and since he didn't show sensitivity to wheat/gluten, he can have his breakfast, lunch, and dinner Cinnamon Toast Crunch.  However, in addition to his multivitamin, focus medication, and the oxytocin nasal spray started after the first visit, he is now to take six supplements.  (Still curious?  DMAE, P5P, Cal/Mag, Folinic Acid, Vitamin C, and a specific probiotic (for the yeast found in his system).)

Let the games begin!

A New Round -- Depression is a nasty thing.  My daughter's depressive episode last summer was awful to see.  This summer, I believe we've seen a dip again (actually, a few dips), but nothing like last summer.  She was hopeless.  We were helpless.  Seeing the spikes this summer takes me back to last summer and our despair.  I thank God that it's not as bad now, and I pray constantly that it gets better, that we aren't setting up for a school year like this past one.

Menopause -- While it ought to be a case of "'Nuff said," in fact, 'nuff can't be said.  Google (peri) menopause symptoms.  In addition to the female issues, you'll see irritability, mood swings, insomnia, panic attacks, anxiety, weight gain, bone density loss, cholesterol changes for the worse, among other symptoms.  It can go on for years.  Years.  And it has been.  In the past several months, I've been to six doctors and need to see a couple more.  I've got issues coming out my ears.  It's even more annoying because now is the time that my daughter needs her mother to be stable; sadly, Screeching could be my middle name.

Ouch -- As if it's not bad enough to learn that I have to wear compression stockings for the rest of my life -- It's a desperate attempt to avoid having ankles like my Great Aunt Agnes' -- I developed a tooth abscess and have to go to an endodontist tomorrow for a consult and likely subsequent root canal.  (I had an allergic reaction to the first antibiotic; I'm now on antibiotic #2 and have had all the icky side effects and none of the healing from the first one.)  From the endodontist's,  I go to a Visitation for the passing of my friend's husband.

There's more, but this will do for now.  Praying for the light at the end of the tunnel.


Sunday, July 22, 2012

Unexpected

My daughter came home tonight from a Youth Group event with a couple of other churches.  First words out of her maniacally smiling mouth were, "I had lots and lots of corn syrup!"  "Why?" I asked.  She had no response but a preteen look and headed to her room.

As she was halfway up the stairs, her dad asked her if she was going to tell me what else happened tonight.  "Oh, yeah," she said.  "I got saved.  And I'm going to get baptized."

Two concepts with impact:  Corn syrup and Jesus.  She's going to have to learn to monitor her own intake of both.  She is definitely on the right track with the latter.

Maybe Jesus can help us with the corn syrup.

Saturday, July 21, 2012

Snit, anyone?

I was in a bit of a snit yesterday, and I'm not sure I've finished with it yet.

Day in and day out, meal planning and most cooking is up to me.  I don't like to cook.  I'm not particularly good at it.  It brings me little satisfaction and no joy.  I didn't have a great role model for cooking, and I've never felt the urge to experiment.  I love my handful of dishes that I don't screw up; make enough of them to eat off the leftovers, and bam! -- the week has flown by.

In reality, though, I can't do this anymore.  Everything takes longer to make when you can't reach in the pantry for what you need because you can't have the four ingredients that are in almost everything store-bought.  (Baking, now, is a completely different story.  I could bake all day and be quite happy.  In fact, that's what I did today:  pumpkin bread and "Cheez-Its" added to yesterday's sandwich rolls on top of the zucchini muffins earlier in the week.)

Anyway, back to the snit.  Since we're GF/CF/SF/CF around here, I've been teaching myself about cooking foods I didn't even know how to pronounce before November, when this all started.  (Please explain to me how quinoa comes out "keen-wah" -- I just don't get it.)  So I ordered a gas grill.  Lots of recipes essentially say to just toss whatever on the grill, maybe flip it once, and you'll have this fabulous, colorful, tasty, and nutritious meal to wow your family and friends.

I have zero experience with a gas grill and only a little with a charcoal one -- usually I light it up just for the S'mores -- so this is a pretty big deal to me.  I put this new grill together yesterday -- by myself -- and despite the threat of rain, fired it up.  I made burgers (to go on the homemade rolls) and grilled summer veggies -- again, by myself -- and served it all up sweet as you please to my family.  (Well, not to my son as his lunches and dinners consist entirely of Doritos and Cinnamon Toast Crunch.  (Breakfast is minus the Doritos.))

The reviews were... tepid.  The rolls were too... too... too gluten-free.  The burgers, according to my daughter, had too much black on them.  The veggies were, well, veggies.  My husband said he'd finish what was on his plate, but he wouldn't want the veggies as leftovers.

Well, spit.

Today I tried a recipe I've had for 20 years and never made:  Cream of Peanut Soup from the King's Tavern in Williamsburg, VA.  That and the peppermint ice cream I had there were, for me, the highlights of the trip.  Anyway, I made it.  It wasn't as good as what we had at the Tavern, but then, I had to substitute almond milk for light cream.  (I'd be really grateful if anyone could tell me a dairy-free, soy-free substitute for cream that is also corn- and gluten-free.)  I served it with a garnish of crushed peanuts and the still-warm pumpkin bread.


"It's OK," from my husband.  "Blech!" from my daughter, adding for good measure, "That's disgusting."  I've had enough.  Yesterday's complete lack of enthusiasm was the tipping point; today's response just ensures I'm down.

Figuring out what to make meal after meal is, to me, an often-times overwhelming chore.  I frequently ask my daughter and husband what they'd like for dinner; the response is an underwhelming, "I don't know."  I slog my way through it, but I would be so grateful if my family would tell me what they'd like for dinner instead of telling me they don't like what I've made.

 I know that I need to focus on the fact that I have both a family and food.  I'll shake off this snit soon, at least until dinner tomorrow.

 

Sunday, July 15, 2012

That other shoe

I was at an evening meeting last week.  With 20 minutes left, I started getting texts from my daughter asking me to come home.  One of the reasons I've had to cut back on volunteering this past year is just exactly that:  My daughter's negative behaviors skyrocketed while I was gone.  From getting on her brother to badgering me to not leave or to come home to running away from home while I was gone, my volunteering just didn't seem worth it to me.

So here I was at a meeting (one of the few I still attend), and the texts started.  I finished out the meeting and drove home.  When I pulled up, before I could even dump my purse and bag, my daughter rushed me at the door.  What happened next was mind-blowing:  She hugged me tight and said she loved me.  This rarely happens.  Typically, my daughter rejects all hugs and loving touches and seemingly never initiates them.  And about the only time she tells me she loves me is when she's sick.  Really, really sick.

I was thrilled.  This could mark a turning point for us.

I just don't believe it.  This past year has left a really ugly scar right across my belief center.  So many attempts to help my daughter started off promising enough but ultimately failed and resulted in escalated negative behaviors -- way worse than they had been.  To top it off, our last two service providers -- the ones that had the most potential and the wisest treatment plans -- left us; they couldn't engage my daughter, so they ended working with us.

When my son was younger, I had to say that just because he did it today doesn't mean he'll do it tomorrow; one success is not mastery.  It feels very similar now with my daughter.  Just because she was loving and appropriate and appreciative today doesn't mean she will be tomorrow.  (Certainly not with puberty holding a party at my house.)

So what will it be?  One of our doctors said that my daughter has an equal chance at any of these outcomes by the time she's ~18:
  • She'll get worse.
  • She'll stay where she is.
  • She'll get better.
She started all this very young.  The hopeful part of me thinks that she'll pull through this and pull through it earlier -- she's just on the fast track.  But mostly I find it very hard to be happy about the positives because I'm waiting for the other shoe to drop.  And explode.




Thursday, July 5, 2012

Just a little more, please.

Twenty-four-hour urine collections.  Second-pee-of-the-day collections.  Hair samples.  Blood vial after blood vial.  I hope to fine-tune my daughter's dietary and supplements interventions (which include being free of gluten, casein, corn, and soy plus the addition of 8 supplements a day).

And finally, almost 12 years after being diagnosed with Asperger's, we're testing my son.  The boy eats only gluten- and casein-ful foods; he hasn't had a fruit or vegetable in 12 years.  I was absolutely traumatized when, at the age of 2-1/2, he completely stopped eating.  Completely.  For a week.  The only way to get him back onto food was to use his "routines" to our advantage:  He always played at the nearby park in exactly the same way and then had a snack in the pavilion.  After seven days of no food intake, I took his listless little self to the park and prayed that he would eat the Chex in the snack bowl.  He looked so unsure, so at war with himself.  How was he to eat when he had correlated eating with barfing (which we didn't know at the time)?  How was he not to eat when his routine was to play on the equipment (by himself, in the same pattern) and then have a snack?  Well, he ate, but his diet from that time forward was even more limited than it ever had been.

We debated going casein- and gluten-free.  Around the age of four, we tried substituting soy milk and cheese.  That was a big no-go.  I just couldn't bring myself to take away all foods so that he would eat the GF/CF foods "when he was hungry enough."  That was never the way he worked.  If it didn't pass his judgment -- and I would have loved to have been privy to his judgment criteria! -- it didn't go in his mouth, no matter how hungry he was.

After we found the DAN! doctor up in Baltimore for our daughter (who doesn't have Asperger's but does have significant chemical imbalances),  I figured it was time to test our son.  My husband doesn't really agree that we should implement any dietary changes for him, but I'd like to start with the baseline testing.

So now between the two of them, in a 24-hour window from this morning to tomorrow morning, I've got three pee-in-a-cup tests going, one hair sample to collect, and two blood draws to have done.  Come on, honey.  Just a little more, please...



Wednesday, July 4, 2012

Marshmallows

Today was a pretty easy-going day.  My kids watched DVDs, did a little something on the computer, and the like.  (They're in a retro phase; today they busted out the Scooby-Doo.  I was planning on culling all the Scooby DVDs to donate.  Sigh...)  It's just too darn hot out to send either of them out to play, even if they wanted to, and at 12 and 14, I can't just turn on the sprinkler and let them run around like loons anymore.

For me, though, it was a busy day.  I feel like I haven't sat down for more than five minutes together.  Today was Food Day.  Food Day includes making all the things that go into all the things that get made.  To bake, I need baking powder, but store-bought baking powder has corn starch; corn is on our "forbidden" list, so I have to make my own baking powder from baking soda, cream of tartar, and potato starch (2-4-2 ratio, if you're interested).

To make peanut butter fudge, I need marshmallow fluff because store-bought marshmallow fluff lists as its first ingredient corn syrup.  To make marshmallow fluff, I have to make confectioner's sugar because store-bought confectioner's sugar contains corn starch.  Put white sugar into the blender for a really long time, but with pauses and shake-downs because the motor heats it up and it gets icky.  Then go back to the fluff recipe:  Beat egg whites, golden syrup (not the called-for corn syrup!), and salt for a really long time.  (Note to self:  Next time, buy a stand mixer to avoid standing at the mixer for 15-minute stretches.)  Add the confectioner's sugar and vanilla and beat some more.

To eat salads, we need a dressing.  After much experimenting, we found a Ranch dressing recipe that we like.  It doesn't have a very long shelf life, so we make it every five to seven days.  I like to line up a handful of containers for the seven herbs/spices that go into it (along with lemon-juiced almond milk (no casein in this house!) and Vegenaise (wickedly expensive) to substitute for store-bought mayonnaise (which, for reasons unknown to me, contains soy or one of the other forbidden foods).  That way, I can just grab a "mix" instead of measuring out half a teaspoon of this and a quarter of a teaspoon of that.

Because it's the Fourth of July, I figured we'd have S'mores.  To make S'mores, we need graham crackers (homemade to avoid gluten), marshmallows (homemade to avoid corn), and chocolate (specially bought to avoid casein).  I could have used the marshmallow fluff for S'mores -- and have in the past -- but I thought we'd enjoy toasting the marshmallows instead of glopping on the fluff.  I had made marshmallow peeps at Easter time, so I used that recipe and rolled the blobs in confectioner's sugar instead of regular sugar.  For whatever reason, (OK, I know the reason:  I tried using a meat thermometer instead of borrowing my neighbor's candy thermometer again) the first two batches of marshmallows were no-gos.  With the purchase of a pretty spiffy candy thermometer of my own, the third batch worked a treat.  By this point, I was getting tired.  The graham crackers didn't get made; we used up the last of the store-boughts and will just have to take the gluten hit.

We also had burgers and veggie kabobs.  Burgers require homemade buns or bread because even store-bought gluten-free buns and bread have corn, soy, or casein.  I haven't figured out how to make buns yet, and the GF bread mix that we used to like so much we now like not so much.  In another command decision, I bought regular, oh-so-full-of-gluten buns.  I cooked the burgers on the grill (oil-misted as Pam-type sprays all have forbidden ingredients) and topped them with bacon, casein-free, soy-free (read, nasty) cheddar cheese, lettuce, and specially bought bar-b-cue sauce or ketchup (as both are regularly forbidden).

I was planning to make casein-free chocolate ice cream, but my husband whispered to me as he headed out the door with our daughter that he was going to stop at Bruster's on the way home from the fireworks.  Bless him.  We're just going to ignore all the lovely casein in that most delicious Brusters ice cream.

So now I'm off my feet.  One child is happily holed up in his room; the other is out with her dad.  One dog is cowering under the bed upstairs and likely won't come out until well after the very last boom of fireworks; the other dog is stretched out beside me on the couch.  There's a piece of peanut butter fudge with my name on it, and maybe, just maybe, no one will need me for several minutes running.  It's funny how my definition of freedom has changed over the years.