Sunday, January 30, 2011

Staples of Our Pantry

Before this diet, some things that I had to have in the pantry or fridge were cereal, macaroni and cheese,  whole wheat spaghetti, juice, lunch meat, cheese, bags of chips for school lunches, etc.  Now all of those are out.  As in donated or thrown out, not in the house (or someone would eat them....possibly me!).

Things that I have to have in the house now for snacks (four growing kids and two adults means we MUST have snacks at all times!) and back up for meals are:

                       rice cakes, preferrably organic brown rice
                       Mott's applesauce cups (no sugar added, possibly sweetened with fruit)
                       green olives
                       Beanitos (rice and bean chips)
                       fruit leathers
                       beans (pinto, lentils, black)
                       whole fruit (apples, kiwi, cantaloupe, cherries, blueberries, strawberries, pears, peaches)
                       Bob's Mill hot rice cereal or
                       oatmeal (really should be organic so as not to be cross-contaminated with gluten)
                       almond milk or coconut milk
                       olive oil
                       raw baby carrots
                       fresh broccoli
                       cherry tomatoes
                       Chex rice cereal (my daughter loves cereal)
                       Nuts (like cashews, walnuts or pumpkin seeds, although not everyone will eat walnuts    
                                or pumpkin seeds....)
                       Laura Scudder's natural peanut butter (nothing but peanuts and salt)
                       Smucker's Naturals Jam (all fruit) or some similar jam
                       Some sort of rice pasta and low sugar spaghetti sauce
                             (now we have this in a pinch instead of mac and cheese)

I know that I still have a long way to go.  We have eliminated so much and added a lot, but I'd like to add more veggies.  For now, however, this is what we've got.  I know that I can't rush my family (or me) or this won't stick.  And this really isn't a diet in the usual sense of the word.  We can't ever go back to the way we were eating.  Our lives depend on it.

Wednesday, January 26, 2011

Part of Our Story--PANDAS

It's "official".  (As official as it's going to be, considering that there is no clear cut test for PANDAS.) 

The official word is that my lovely daughter has PANDAS.  The results of her bloodwork have come back from the Cunningham Study at Oklahoma State University.  Results show her Cam Kinase levels to be high....indicating that her body is fighting itself, causing inflamation in her sweet brain and causing so much of the behavior that we have seen.  Her body is having an autoimmune response to Strep (probably) exposure. 

This is not a shock.  My family is full of autoimmune issues.  Thyroid nodules for all the women.  Merry Christmas.  Asthma that ultimately cost my grandfather his life.  There you go.  Wegner's Granulomatosis that took my dad's life.  Rheumatoid Arthritis for a great uncle.  Happy Birthday.

About three months ago, I sat in my van one evening with my sweet friend who also has a PANDAS girl.  At the time, neither of us knew for sure.  I told my friend that I was hoping that it was PANDAS because then there would be an easy fix.  No more complicated menu planning, supplement shopping and googling at 3 a.m.

But here we are, having found out that it is PANDAS, and now knowing that there are also other issues, too (like Clostridia!).  There are gut issues.  Her gut is not well, I tell you, and even if I didn't know it, I could take a whiff of her breath or go into the bathroom after she's made a recent visit and tell you that her gut is not well.  So while my first reaction is to run out and get her on a good antibiotic for PANDAS, I have to sit on it for a few days and think about that.

Because what happens when an antibiotic goes in and kills all the good bacteria that is there, and there's not nearly enough in her case, is that yeast starts to grow in abundance.  To the point that it starts to cause problems.  And while we use probiotics, sometimes that seems like it is not enough.  And along with the yeast, clostridia can become more of a problem, it seems, with certain antibiotics.

So, I'm just thinking out loud here, but I was thinking I should walk into the doctor's office and ask for a good strong course of Vancomycin (which makes me shiver in my boots because it is strong and broad-spectrum).  Vancomycin can supposedly wipe out clostridia and PANDAS.  And that's what I need!  I need a magic eraser to go in and get rid of the bad, while I put in the good, right?  Right?

As with all meds, it seems, there is a drawback to the work of Vancomycin, and it is that in the majority of cases, after the clostridia is gone and the Vanco is stopped, the improvement in behavior goes away.  Now seriously, I am just a beginner at this.  I need to do a lot more research on what has happened with Vancomycin, but really? 

So I guess I'm sounding kind of sour today.  In fact, as I rethink my attitude over the past month since my girl started becoming more symptomatic, I've been kind of irritable. 

So I will end this post by breathing deeply.  And remembering... "I will give thanks unto Thee  for I am fearfully and wonderfully made."*  And so is my girl.

*Psalm 139:14

Monday, January 24, 2011

Dinner Tonight

Something new was on the menu tonight.  Lentils.  That may stir up visions of nothingness in your head.  It was certainly what I thought of when I looked at the package.  Which is why the package sat in my pantry for over a month. 

But I've heard that lentils are packed full of nutrients, so tonight we took the plunge.  Lentil soup. 

1 pkg. lentils, sorted, bring to a boil, simmer for 2 hrs. 
5-6 medium tomatoes
3-5 stalks celery, sliced thin
3-5 large carrots, sliced thin
handful of cilantro
5-6 green onions, sliced thin
2 Tbsp. chopped garlic (hey--it's good for you!)
1/2 Tbsp. black pepper

If you are so inclined, spice it up with red pepper or possibly curry.  We ate it straight with fresh green beans, steamed with garlic and a little sea salt.  It was surprisingly filling, and we enjoyed it!  I guess you really do learn something new every day.

Friday, January 21, 2011

I Am What I Eat (And So Is My Daughter)

I am not a drinker.  For many reasons, I hate alcohol.  But I am an eater. 

If I'm extra stressed, a yummy ice cream treat feels like a warm hug.  When I've had a long day, and the kids are all asleep, I could eat probably half a package of cookies...if they're warm cookies out of the oven, mmmmm....i could eat half a roll of slice and bakes, at least.  And I believe I've mentioned something about donuts before.

And looking back, there have been days, weeks at a time probably, when I have eaten nothing that my body recognizes as nutrition.  I know this sounds silly, but I always justified this by telling myself that I live in the United States of America, for goodness sake.  It's not like I'm living in a third world country.  Even our worst food is full of things that our bodies need to work well.  Yeah, I'm laughing at that now.  A little.

Yet through all of my horrible, "it can't really be that bad" eating over the years, God has brought me to this place where I have to look directly at the impact of what I put into my body.  I'm now forced to look at what I am depriving my body of when I have donuts and a sweet tea for breakfast, a hamburger for lunch and spaghetti for dinner with a snack in there of ice cream and/or birthday cake (okay, I really don't have that anymore....:) )  I have eaten that way for most of my adult life...and I mean MOST ALL of it!

 And not only have I been depriving my body and thus my brain, I have also been poisoning myself with things that were never meant to be food for the human body (a la creme filling in Oreo cookies...and chlorine and other chemicals in my tap water). 

So here I stand, looking at the physical issues in my life (unknown gastro symptoms that have put me in the hospital several times) and the psychiatric issues in my daughter's life.  I know from testing that my daughter is deficient in some very important minerals, vitamins and fatty acids.  And I know that I have to begin to swim upstream.

To be honest, I didn't wake up today knowing that.  It's been a process of me knowing.  Hearing parts of this here and there, and in the beginning, especially, trying to "unhear" it.  Thinking that if all of this were really true about our Standard American Diet and the increase in autism and attention defecit and allergies, it would become common knowledge soon.  I'd think about it then.   There couldn't really be such a huge connection between our diet and these things plaguing our children (and us) was just people grasping at straws, hoping beyond hope. 

And then another piece would fall into place.  Yes, it really can be.  Yes, our children (and we) are often suffering because it's "too hard" to change.  Yes, we can heal our children.  Yes, yes, yes!

I'm starting to realize that with food, as with education, role models, entertainment and morality, the fact that everybody I know is embracing a certain kind of it does not make it right.  Just because everybody I know eats cheesy pizza and is still walking (right now), does not mean that it is working well inside their body.  Just because everybody's kids are eating the cupcakes and candy and drinking the red juice at school doesn't mean that it is okay.  Just because it's easier to drive through McDonald's to pick up dinner does not mean that the food in the bag is not harmful to my family.

Just because people may think I'm "one of those" for limiting my family to a gluten-free, cassein-free diet does not mean that I am wrong. And it's okay if it feels like everyone else thinks I am. My family is worth it that price.

I've been watching a movie or two in my "spare time" (ha!).   These are my favorites (in preferred order):   Food Matters, Supersize Me, Food, Inc. and King Corn.  Let me know if you have seen another good one.

All of these documentaries have links on the sidebar.  And all of them can be found on Netflix.  Now go get the remote.

Sunday, January 2, 2011

Is It Asperger's?

My sweet girl (that sweetness was lost for quite some time) has been through so much in her short life.  Sometimes my husband and I catch ourselves thinking that she is older than she is..."How can she only be eight years old?"  Sometimes a month of tantrums and screaming and worry and googling and calling "professionals" has happened in a day.

At one point, after we had been seeing the psychiatrist for a few months and had put her on psychiatric medications (one of my big fears for her) and had changed schools twice, I was desperate for a diagnosis.  Not because I wanted a label for her.  I didn't want something to be wrong with my child.  But something was very wrong with my child.  I needed to know how to treat it, and I felt like a diagnosis would point me in the right direction.

Some of the time, we could keep things "under wraps".  But anyone who spent any kind of intimate time with us knew that something was not right with our child (a lot of people thought that something was poor parenting, but that's another post).  My sister mentioned that a friend had a grandson who had been diagnosed with Asperger's Syndrome, and he seemed a lot like my daughter.  And I had been thinking a lot about Asperger's on and off. 

In fact, I mentioned it to my daughter's teacher at the end of her first grade year, but the teacher shrugged it off and said that all kids had tantrums.  When I mentioned her uniform that she could never zip up all the way and the fact that she could never wear her mary jane style shoes completely (she walked on the backs of them), she seemed to think that was a phase...a normal first grade thing (I had been a first grade teacher for many years and didn't think so).  She wrote off the fact that she had trouble making friends with the other kids as having a particularly hard group of kids to break into...only two other girls in the class (but i had been up to school many times with her and had seen the difficulty she was having with peers).  My daughter seemed unaware of "social cues" and how to handle herself in the social situations of school.  She did really want a friend, but she couldn't quite figure out the dance.

I called our school district's evaluation team and asked what they thought.  The psychiatrist on the phone said that it sounded a lot like Asperger's to her, but we'd test her.  They went through all of the testing, academic, IQ, emotional, etc. and came back with, "Why, exactly, did you bring her to us?"  Her IQ was very, very high.  She had been social during the testing situations, and the evaluators seemed to enjoy their time with her.  They did acknowledge the OCD that I reported and some emotional issues (she really hated school).  They understood that I could not get her dressed for school or get her to do ANYTHING in the morning...certainly no socks or shoes, and they seemed to recognize this as relating to OCD, but other than that, they thought all was well. 

So....I let it go.  She'd been evaluated; it must be something else.  But things persisted that made me think Asperger's.  Routine was huge, and a change in it rocked her world (and ours).  She could play alone for a long period of time...or work in a workbook or color...she had what seemed to me to be a really long attention span for a young child. 

She had a hard time with new people or places, etc.  In fact, when she was three months old, we took her to my parents' house for the first time.  My mom, being very excited to see her, rushed out to meet us.  She took my girl into the house and sat her down on her bed for a good look at her.  Sweet girl didn't cry at the rushing in.  But when she was on the bed, she began to look around (we always thought she was very observant!).  It was like you could see her mind thinking and checking and realizing that she had never been there before.  And she became hysterical.  Enough that I clearly remember it today as odd.  (Even in the nursery at the hospital, as the other babies cried, she was quiet and observant.) 

Darling girl was  poorly coordinated.  Not like she was tripping over her own feet, exactly, but she had done poorly on her report card in physical skills in kindergarten.  She had low muscle tone, a lack of energy, not much physical stamina.  There were definitely many explosive tantrums.  And she definitely had sensory processing issues.  Specifically, she couldn't stand the way that any type of clothing felt, hated having her hair brushed or me even touching her.  She hated strong smells, loud noises, etc. 

So I kept thinking Asperger's and even asked her psychiatrist about it.  He seemed reluctant to commit but when I asked, "What do I tell people who are asking what's wrong?"  He said, "You could tell people who are asking that it's like that."  Now, I'm grateful for his reluctance to commit.  I'd hate to have something like that on her "permanent record" with insurance or anywhere else.  Especially since I think she's going to be fine, eventually.

I called a developmental specialist recommended by a friend who's daughter also had some sensory processing issues.  We went for a long evaluation.  She was an expert on what autism looked like.  By the date of our evaluation, I was reading my second book on Asperger's and was convinced that this was her. 

The specialist's conclusion?  Not Asperger's.  Too high functioning.  Too social (even though she was often very anti-social).  Too able to draw abstract conclusions.  Too empathetic (but by this point, not to me or other members of our family). 

She recommended that we hang on for a bumpy ride and said that she could easily be diagnosed with oppositional defiant disorder in addition to ocd, generalized anxiety.  Since our girl was often really aggressive by this point, the specialist recommended that we put a lock on the outside of her door so that when she became aggressive, we could let her calm down (or tantrum) in the room rather than hurting someone.  She said that things could get a lot worse when our girl entered adolescence, and we needed to make sure that we had her in with a good therapist by then.

It seemed like that was the best we were going to get.  Hang on for the ride.

I was very upset.  I didn't want her to have Asperger's.  But again, I knew that she had something.  And without knowing what it was, we didn't know where to go.  It sort of seemed like there was nowhere else to go.  Except back to that wild diet idea. 

Following the specialist's recommendation, we quickly got sweet girl in to see a play therapist.  In addition to twice a week occupational therapy.  And twice a month (and sometimes more often) psychiatric visits.  Oh yeah, and an antidepressant and a mood stabilizer.  Which would have been well worth it all if it had been working.

Saturday, January 1, 2011

Yeast, I Hate You.

That last post was sitting as a draft for quite some time.  I felt compelled to post it because I was suspicious that the big Y was back.  Yesterday morning, I did the saliva test on myself and the three oldest kiddos.  Guess what.  I hate you, yeast.

Yeast Detox

Our family did the yeast detox diet for not just 28 days, but for four months.  Let's just say that when this happened, I knew that something was working.  I wanted to make sure that we ran off all the old familiar darkness, and if that meant that we did the yeast detox diet for the rest of our lives, I would have been okay with that!

You might be wondering why we did the diet in the first did I know that we had a yeast issue? Well, first of all, something was definitely wrong.  Our girl couldn't tolerate any type of clothing by this time.  When we did get something on her that was several sizes too large (and she'd pop the threads in that trying to stretch it bigger), she couldn't wear underwear or socks or shoes, although she could usually wear crocs.  And she was oppositional to say the least.  Everything we said set off a tantrum that would last for hours.  She was angry.  And aggressive.  She'd hit and say the most hateful things.  She would bite, break things, beat up the walls, kick people.  And she was already taking an anti-depressant.  And a really heavy dose of an anti-psychotic.  And those two medications had packed probably 20 pounds onto my 7 year old's body.  She was now getting to be hard to restrain.

So why did we think it was yeast?   "Suspicion" is all that I can say.  My lovely daughter was born a big baby girl at 9 lb., 8 oz., but I was not diabetic...gestational or  or otherwise.  Yet soon after birth we discovered that she had thrush (oral yeast).  And throughout her infancy and toddlerhood, she had bouts of yeast in her diaper area that I could never fully get rid of.  As a young child, she was sluggish...she'd sleep until 11 a.m. or later if we let her, and if we didn't let her, her nap was usually 3 hours.  She was a big sweater when she slept.  Sweet girl had horrible breath.  She developed a strange, recurrent stomach ache when she was four.  It hurt so badly that she laid down on the floor on her belly trying to make it stop.  Her belly was always a little bloated.  She craved bread and that type of food, although she would eat fruit and vegetables.  She had frequent bladder infections.  She was almost always constipated.  And my daughter had been diagnosed with OCD.  Oh, yeah, and did I mention that she had shiners?  Those are dark circles under the eyes that often go with yeast or allergies.  She had very dark shiners. 

All of these things made me suspect yeast, and although we always wanted to look for a nutritional answer instead of medication, she was already on medication, but we couldn't find the right one or even ones to do the trick for her.  So now I was convinced that we HAD to find a nutritional answer. 

Her pediatrician, God love her, knew absolutely nothing about this.  I mean, she knew about thrush and vaginal yeast infections, but that was where the party line stopped. Doctors look at you like you're crazy if you believe that yeast does anything else.  How in the world could it be related to behavior?  Ha.  So where was I supposed to get help to walk through a yeast detox?  I had read a little about it online and had seen a couple of books...I thought that I could do the diet without a doctor.  But I needed a doctor to write a prescription for oral Nystatin and/or Diflucan for an extended period of time.  And my pediatrician would not do that.  (I needed the antifungals because while the yeast detox diet would stop feeding the yeast, the antifungals would actually kill the yeast.)

I started looking for a holistic doctor, and luckily, someone on my mom's group message board mentioned a "wellness doctor" fairly close to me.  She didn't take insurance, and you had to sign up for the expensive program, not just a visit or two, but I needed that prescription.  And "the program" came with a nutritional consult at a local grocery store to help me pick the right kinds of foods. 

The wellness doctor immediately started my girl on Nystatin.  Immediately, as in, as soon as we could start the diet.  That is a whole seperate post that I shall write soon.  On her third week of the diet, she was to start Diflucan for seven days.  And we were given several other supplements.  Well, you know, we weren't really given them.....

So the protocol initially looked like this:

nystatin a.m. and p.m.
yeast detox diet
2 Tbsp. fish oil
5000 iu vitamin d daily for 5 days and then every other day
Biopro probiotic from Complementary Prescriptions 2 in a.m., 2 in p.m.
1/2 capful of NutraMetrix Advanced B-Complex
1 capful of NutraMetrix Vitamin C
1/2 capful NutraMetrix Isotonix Multivitamin & Multimineral with Iron
1 capful Nutrametrix Isotonix OPC-3
(All of the Nutrametrix powders were mixed into an 8 oz. glass of water for girlie to drink.)

During week 3 we added Diflucan once a day.
Later we added 4 magnesium capsules daily--2 in the a.m. and 2 in the p.m.  These were from Complimentary Prescriptions (which I got from my wellness doctor).

I understand that intially, all symptoms can become worse, and we were given something called Nutra-Tabs for that.  We only used it once or twice, however, when my girl complained of a stomach ache. 

Results?  Amazing.  This diet brought my girl back to me.  Praise God!