Archive for the PDD-NOS Category

New Developments

Posted in autism, gfcf diet, musings, PDD-NOS, primal cooking with tags , , on April 13, 2012 by askthesky

FAIR WARNING: This post contains highly personal health information.  If you’d not like to read about such things, by all means, back away from this post.

The radio silence around these parts has been due to a knock-down, drag-out fight between me and my intestines. Recently, my son got what seemed to be one of those 24-hour vomiting viruses.  He got sick twice, once in the car (my sweet husband earned a parenting stripe for that incident), and then the next day was bouncing off the walls in his usual way.  Textbook stomach bug.  Despite washing my hands twenty billion times during my son’s illness and subsequent hazmat clean-up, two days later, I woke before dawn with crippling stomach pain.  Now, my stomach woes always tend towards the other end of the body, rather than the vomiting, which (don’t get me wrong) I prefer, and yet, after 36 years of dealing with such issues on a weekly basis, I am so.  tired.  of it.

All that day, I stayed in bed, sleeping a ton and heading to the bathroom in between.  I had to work that evening, and I made it to the service, thankfully I didn’t have a lot of active ‘work’ to do, so I just dragged myself through it.  The next morning, I felt passable.  Not great, but good enough to say “Yeah, great idea” when husband suggested we hit the diner for breakfast.  I had two scrambled eggs, two sausage links, and three slices of tomato.  No coffee, just water.  All that day, I felt mildly off, but I took naps and breaks from cleaning the house, and it was okay.

The next morning was Easter, and when you work at a church, there is no missing Easter Sunday- not that I wanted to, or felt it was warranted, I actually felt a lot better when I got up that morning, on day 3.  We went to service, hunted eggs on the lawn, had all our friends over for lunch, and had a fun trip to the ER to give my son an albuterol treatment for his allergies (he’s fine).  On the way home from the hospital, I felt it.  That familiar acidic rumbling in my lower abdomen, coupled with the feeling of being trapped underwater.  It was coming back, and I was in the car for the next 20 minutes.  Would I make it?

(I did, you can stop worrying.  Thanks, though, you’re sweet.)

I say familiar, because for most of my life, I’ve been feeling this way every few weeks for a few days at a time.  I’ve learned to just power through, but it’s really awful.  I don’t know what happened this time, but something clicked in my head, and as I lay in bed the next day with a high fever, wondering how on earth this could possibly be the same virus my son had almost 5 days prior, I decided I was done with sucking it up.  I was going to get to the bottom of this, once and for all.

Starting around age 10, when I got my period, my stomach woes became a large part of my daily life.  I had (and still have, to some extent) really bad periods- terrible cramping, heavy bleeding, and, every single time it comes around, diarrhea.  This led my GYN in high school to posit that I may have Endometriosis.  Both my mother and older sister had been diagnosed with the condition as well, so it made sense.  A few years later, I would have exploratory surgery, with the intent of diagnosing the condition, and moving forward with treatment.  When they got in there, they found no sign of endometriosis.  Cysts, sure, and fibroids, they were having a nice party in there, but not the spots of tissue growth they had expected to find that would have explained my bowel issues.  I was diagnosed by my regular doctor as having IBS, and I was put on Levsin, which helped nothing.  I stopped taking it about a year later.

Flash forward to after my kids were born- Zander was three years old, and had just been diagnosed with autism.  I am lucky enough to have a dear friend who has dedicated her life to helping kids with autism, and she starts talking to me about dietary interventions.  “I have clients who seem to think it really helped their kids, and then others who swear it did nothing, but you’ve got to try.  As a mother, and not a trained therapist, this is really one of the only things you can do.”  I knew she was right.  Selfishly, I didn’t want to adopt the “autism diet”.  It seemed impossible, but I knew if it would help bring my son back out of his fog, I would do it.  We started the diet the week before Thanksgiving that year.  My son also had been dealing with his own intestinal issues, all very simliar to the ones I had struggled with my whole life.  He also had intense eczema and horrible diaper rash.  I met with some other local moms who were more practiced than I was, and we started cold turkey- we cut out gluten, dairy, soy, preservatives, artificial flavors, and artificial colors.  I realize that recently there’s been a lot of studies published that say dietary interventions don’t work for autism.  I guess for me, they just don’t matter.  For my kid, it was a miracle.  His language came back.  His eye contact came back.  His skin cleared up.  He started singing again.  He was my boy again, but still- he suffered from the bowel problems.  His diaper rash got mildy better, but never went away.

About two weeks into the new way of eating, my daughter and I had a large helping of all of the off-limits foods at a church dinner (I had packed my son’s dinner).  Lasagna, garlic bread, ranch salad dressing, croutons, parmesan cheese.  We were both sick for days and days.  It was like the flu, on crack.  I decided we must also have some sort of issue with these foods, and decided that the “cheating” wasn’t worth it.  My kids were so young when this happened (3 and 4), I just implemented the changes and didn’t look back.

The years passed, and my gut health remained about the same.  Usually, pretty good, and occasionally, really really bad.  I just sort of accepted this as my lot in life and trudged along.

Then, last year, I read The Primal Blueprint, by Mark Sisson.  I talk a lot about how that book changed my life in another post.  Sufficed to say, I was so moved by the arguments laid out in the book, I decided to take my family one step further down the path to total weirdness, and cut out all grains, sugars, beans, and processed foods.  My husband, after about a month, started shedding weight like it was going out of style (and still is).  After 6 months on the new plan, I had lost 6 pounds.  SIX.  I couldn’t believe that was it.  And while my digestive woes had seemed to have calmed down a bit, they were still there, lurking in the background, making their appearance when it was most inconvenient.

Then, the week prior to this week happened.  I got really sick, for almost a whole week.  I ate almost nothing (homemade bone broth, eggs, tea, and one banana).  Then, I stumbled upon this post, by  Peggy of The Primal Parent.  The title caught my eye, as “IBS” was once one of my labels.  Fructose Malabsorption.  Huh.  All the symptoms seemed to mirror what I’ve been struggling with all these years.  Peggy recounts how even after trying a million different tinkers (and i’ve been there, too- GAPS, SCD), she just didn’t feel like she was optimizing her health.  This is exactly how I’ve been feeling about eating Primally!

Yesterday, I decided to give it a go.  I was already eating bone broth, meat, and eggs, now I’d just have to resist temptation with the fruit in the house, and add in the vegetables that are safe- no fructans (onions, garlic, cabbage, and a bunch more), but most things were acceptable to eat on the FM eating plan.

Now, I’m not saying that I have this disorder (yet), but some of the things Peggy wrote in that post really rang true for me, and after 2 days of cutting out fructose and fructans, my intestines seem a whole lot happier than they have been for the past week.  Here’s hoping that during the next few weeks of experimentation, I’ll be able to nail this down, one way or another.

Here’s hoping.

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z-man update

Posted in autism, charity, gfcf diet, PDD-NOS on April 2, 2008 by askthesky

Hello, visitors from Lovelyarns, and everyone!

Sue has done us such a service in hosting a fundraiser for us- for those who aren’t coming from the Lovelyarns email, my local yarn shop owner has organized a Saturday (like this) knitting session where everyone will be charged to attend, then she’s pledged to match the funds raised to help with Zander’s medical expenses.   I stopped in to the shop today (for Mental Health Wednesday, of course), and already there have been donations.  A huge thank-you to everyone who has and who will contribute- it is so moving to me that this whole community cares about my baby (who, according to Sue, is officially a giant).  I also want to say, before I forget, that the event at Lovelyarns is happening (and this is quite by accident, I assure you) on Zander’s 4th birthday, April the 12th.  I will be there at some point with him, and allergy-friendly cupcakes. 

All the attention has generated some questions and super ideas, so I thought I’d do a quick update to let everyone know where we are, what we’ve done, and what’s on the horizon for us relating to the big Z.   Also, today is World Autism Awareness Day, and April is Autism Awareness Month. 

At the beginning (in October 2007), when Zander was diagnosed with PDD-NOS, I started reading a lot about the “autism diet” popularized in Jenny McCarthy’s book.  We adopted it formally towards the end of November.  Sage and I also follow the diet, because it’s healthy, it’s a lot easier than worrying constantly about cross-contaminating Zander’s food, and it’s delicious. 

What we CAN eat:

Organic produce

Organic (mostly) free-range eggs

Organic, free range, hormone free, antibiotic free, nitrate/nitrite free meats

Organic nuts, seeds, and beans

Gluten free grains (rice, corn, quinoa, sorghum, etc.) 

What we CANNOT eat:

Gluten grains (wheat, rye, etc.)

Dairy foods (milk, cheese, and most “dairy free” milk and cheese substitutes, which contain the protein casein)

Soy foods of any kind

Preservatives

Artificial colors and flavors 

So, nearly everything I make is from scratch, as the pre-made things that fall into the “can eat” category are very expensive, and, in my opinion, as tasty as newspaper.  After we started the diet, I immediately noticed gains in Zander’s eye contact, language, and fogginess- he seemed to have a constant head cold before this, and I mean he had respiratory symptoms, but also that he sort of acted like he had medicine head.  The medicine head started to lift at this point. 

WARNING TO THE CHILDLESS: DIAPER DISCUSSION DIRECTLY AHEAD! 

Z’s diapers have been so gross since he was weaned from breast-milk- I mean, so smelly that a gas mask seemed like a really good option, if it wouldn’t have made my baby feel as though he was being changed in a war zone.  Opening all the windows didn’t always make the smell go away.  The smell laughed viciously at me when I got out the air freshening spray.  It was sort of a demon lurking in his pants.  It was NOT GOOD.  I could go on to describe the consistency, but I don’t want to turn you off from reading my blog ever again, so let’s just say it was the cousin of Demon S. Smell and leave it at that.  His diapers did not improve with the diet change, which surprised me.  I was to find out the answer to this conundrum later… (FOREshadowing…dunt dunt DUM!)

During this time, I was also going through the Baltimore County ChildFind program, which was where he got the original diagnosis, to have Zander placed in services.  In the end, it turned out that I had to go through the Baltimore City ChildFind, which proved to be the nightmare that all big(ish) city bureaucracy is- they ended up delaying his placement for almost two months because one low-level employee would not run something by her supervisor.  Of course, when I went to the supervisor of her supervisor, he was very helpful and quite apologetic, and expedited my IEP meeting.  The result was that Zander was given a private placement at Kennedy Krieger’s Fairmount School.  He started there in the last week of January, and almost immediately, I saw gains.  The biggest one was that he sat on the potty- something that made him react at home as though I’d suggested that he try sitting on a porcupine.  At KKI, he has many different kinds of therapies and educational interventions integrated into his daily routine.  I’ve also learned a ton from his teachers- we’ve implemented his school schedule at home on weekends, and he uses a visual schedule to help him know what’s coming up next.  I’ve also made a bunch of “work” activities for him, which I may post here individually during April.  All of these changes have helped him to be less violent when transitions happen (he used to really lash out, and he still does occasionally, but much less often now). 

Next, we found out about a DAN! (Defeat Autism Now) doctor in the area who was highly recommended, and has a son on the spectrum herself.  A friend I met through a local agency generously offered to pay for the first 2 hour visit (the doctor is about $350 per hour, and that’s the mega price break she gives me, because she’s charitable). She examined him, and commented to me in one of those moments when you sort of feel like all the air has been sucked out of the room, “is his belly always this distended?  He is so bloated, that’s got to be painful for him.”  The answer was yes, it did always look like that.  She later asked me if he ever laid over the arm of a chair or in “child’s pose”, over his knees on the floor with his bum in the air.  He almost always did that, which she told me is an indicator of belly pain.  He has not (as of yet) been able to self-report; he can’t tell me he’s hurting or hot, or lonely, or sad.  It’s just not part of his depth of knowledge yet. 

We had a battery of tests, including blood tests, hair tests, and urine tests.  The results revealed the answers to all his diaper woes — raging bacterial and yeast infestations in his intestines (referred to by those who discuss such things as “the gut”).  His hair tests showed elevated levels of antimony (a flame retardant found in children’s pajamas and carpets, among other things) and a severely elevated level of lead in his tissues.  It is thought that the metal toxicity persists because the immune system is too busy fighting off the gut infections to rid the body of toxins through the normal channels. 

The past two months, along with the diet, we’ve been treating his gut with 2 kinds of antibiotics, two yeast medicines, probiotics, vitamins, and herbal treatments like Cod Liver Oil and Grapefruit Seed Extract, and other therapeutic elements, like the humble yet effective Epsom Salts bath.  We’ve introduced all of these things separately, to ensure that he wasn’t having negative reactions, and to make sure we could check the effectiveness of each. 

His gut (and, consequently, his diapers) have enjoyed dramatic improvement.  He’s no longer leaning over things, which I hope means his belly isn’t in constant pain.  He also began eating foods he had previously rejected (broccoli, cauliflower, cooked carrots). 

Next on the horizon is treating the metals.  The process is called chelation, and I don’t know a whole lot about how Zander’s course will be.  It might be long and very expensive, it may not be.  We’ll know more next month, when we visit the doctor again.  As for the source of the lead exposure, it’s unclear.  I’ve had our water tested, lead paint is not a problem in our house, I’ve replaced plates and toys that were suspect, but the fact is, I may never know where this lead came from, and I could spend the rest of my life (and measly nest egg) hunting for it.  Instead, I’ve attempted to remove possible sources of exposure that were feasible to remove, and doing a lot of praying about the rest. 

Please feel free to email me if you’d like more details about Zander’s DAN! doctor, his treatments, or his school.  I’d be more than happy to share what I know.  I will say to close, that this story is very common amongst the autism moms I am lucky to know.  Why it happens this way, why our kids have these common challenges to overcome, I cannot say, but I thank God these moms are out there helping those of us who are desperately searching for help.  I hope this information can serve someone as those moms have so graciously served me.

Oh!  I almost forgot!  In a recent post, I was hoping.  Tonight, as I tucked him in, Zander grabbed my neck and pulled me down close to his face for a kiss, saying, “Love Mama!”  I could only laugh to keep from crying- I’ll take it, little man, I’ll take it. 

Lead balloon

Posted in autism, life in general, musings, PDD-NOS on February 20, 2008 by askthesky

Hello there.   I’ve just been hemming and hawing about sharing this info I’ve recently acquired, and I’ve come to the conclusion that changes are afoot, and I’d like to explain them before they’re all here. 

Zander’s autism specialist has brought to my attention the problems she’s found in his body.  Among them is an extremely high level of lead toxicity (not lead poisoning in the blood, rather in the tissue- it’s actually worse than in the blood), and a pair of super intense infections, bacterial and yeast.  The Dr. thinks that the lead has come from the water in our house, as we don’t seem to have any lead paint.  I’ve ordered a kit to test the water, and in the meantime, I suppose we’ll need to use bottled water to drink and cook with, and install a shower filter to fill the bath with.  I’m looking to buy a house now, so that if I need to install a whole-house water filtration system, at least we’ll be able to reap the benefits fully. 

My little man will also need to go on 2 long courses of medication to knock out these infections, all told about 2 months’ worth, then we can start chelating to remove the lead.  All of this is going to be extra tough on him physically, and I’ve been told to expect the worse as for as regression, physical symptoms, and behavior. 

SO.  While I’m so grateful to know what’s going on in his body, this is pretty overwhelming.  I have a plan, I have support, but still, it’s hard not to shut down in my head when I think about it.  I just keep imagining how his brain might work without a poisonous level of metal.  How well his intestines might be able to do their jobs if they weren’t fighting a losing battle with multiple enemy armies. 

How maybe, someday, he’ll say “I love you, mama.” 

Gotta keep hoping, and moving, and talking.  Thanks for listening. 

new directions

Posted in autism, gfcf diet, PDD-NOS, product review with tags , , on January 13, 2008 by askthesky

Well, I thought I’d start fresh for the brand spankin’ new year with a new theme.  You like? 

 I’m also taking this opportunity to unveil a new category of posts for the blog- I’m going to start reviewing products I’ve tried on the Gluten Free Casein Free diet.  If I see enough traffic, I’ll go ahead and separate this feature into another blog, but in the meantime, I’m gonna keep it small.  I do know that it’s really frustrating to put out a lot of moolah for a product and then find all its shortcomings after it’s too late.  However, here’s a tip: if you’ve bought an offending product from Whole Foods or Trader Joe’s, they might take it back if your child rejects it, or if you find an ingredient that your child doesn’t tolerate (or stops tolerating before you can use the product).  Whole Foods especially makes it easy to get your precious money back. 

So, let’s get to it!

  Orgran Mulitmix Product Photo

(photo from the efoodpantry.com site)

Product Name:  Orgran Gluten Free Pizza & Pastry Multimix

Bought at: efoodpantry.com

Price: $4.29, plus shipping of $8.38 on about a $22 order

Orgran is an Aussie company that has received good press from the autism superstar mom, Jenny McCarthy, so I thought I’d give this product (as well as a couple others) a try.  In general, I prefer to cook from scratch, but this mix had so many possible options for preparation, it beckoned to me with its multimix splendor of possible choices.  I probably should have gone with my gut…

 I made “scones”, following the instructions on the box.  I used 2 egg whites, beaten, and instead of water, I used half coconut milk and half water.  I also didn’t have a scone pan (Have you ever used a scone pan? Not me…), so I just arranged the dough the way I always do when making scones (and I’ve made lots of scones, we go wayyy back)- patting the dough into a circle, cutting the individuals apart, then sliding them apart ever so slightly, as in, how far apart I’d be from Orlando Bloom, whilst I interview him for an important GFCF product review.  Not far. 

Sorry, eating these scones must have pushed me right into a daydream to avoid thinking about the chalky lack of crumb in my mouth.  Can you guess how they turned out?  I baked them at the suggested temperature, for the 20 minutes called for (which seemed nutty as well, again, based on my past scone-related escapades), and they came out looking like… well, like this:

 

I forgot to mention that I sprinkled them with cinnamon sugar before I popped them in the oven.  That’s not the one that got dropped on the floor, I promise.  That one’s on the bottom of the pile. 

So, they’re white as the light at the end of the tunnel, but less hopeful.  They’re as dense as my Vanagon Bus used to be when all my friends needed a designated driver to and from Fells Point, and they are devoid of crumb entirely.  I could talk about the taste, except it was as though taste entered another dimension, leaving me no way to describe it, even using the most colorful metaphor.  The cinnamon sugar on top was delicious, as was the jam the children and I slathered all over the top, sides, and bottoms of these, in order to choke them down.  Which, we all did.  I have such good kids. 

Now, I might have done something wrong, but either way, I prefer to make scones from scratch.  I’m still developing a very yummy scone variety for the cookbook I’m writing (tease, tease!)…

Thanks for tuning in, if you like this feature, leave a comment, and if you’re Orlando Bloom, please know that I will always bake from scratch when you come to visit.

update

Posted in autism, life in general, musings, PDD-NOS on December 13, 2007 by askthesky

hey everyone.  i love all the christmassy cheer i’m seeing on everyone’s blogs, and i especially love how honest everyone has been about feeling stressed, and not getting all their handcrafted gifts crossed off the list just yet. 

we’ve been cheery around here, too, although i have no pictures no prove it.  i’ve gotten a few of my church responsibilities for the season crossed off the list, i’m almost finished craft shows for the month, and i’ve got all my plans laid for the family visiting. 

still, most days i feel like all i do is cook, wash dishes, and soothe a screaming, yeast-die-off boy.  oh, and protect his sister from his wrath.  that’s a big one.  i know it will pass, but it is truly the hardest thing to watch your child obviously in pain and be able to do nothing to ease that pain.  i got him started on enzymes, olive leaf extract, cod liver oil, b-12, spectrum support multivitamins, grapefruit seed extract… there’s about 4 or 5 more things, but i’m not remembering them all right now.  i was so lucky to meet a local autism super mom (thanks, patricia!) who’s supplied me with all these things and the guidance i needed to get them all started.  it’s mind-boggling, people. 

zander’s iep meeting is tomorrow morning, and i’m hoping it will be uneventful, and he’ll get the placement i want for him.  i’m going to ask for home ABA programming, too, but i’m less sure we’ll get that. 

he’s still going strong on the diet, as are sage and i- i actually thought i’d let sage eat “regular” food at our Christmas dinner last week (lasagna and garlic bread- the worst possible meal!), and i did, too, and boy- did we ever pay for it.  no more infractions for us- poor sage looked as though she had two black eyes the next day, and we both felt like crap.  they are still have infractions at theid dad’s house, and i’m hearing arguments right now for (and against, in my own head) keeping them with me full time and/or sending all their food with them (which wouldn’t exactly solve the problem anyway). 

oh, also, my landlord (remember how i just moved into a rental in September?) called me the other day to tell me that she’s putting the house back on the market with a realtor, and she’s found 3 interested parties.  she wanted to know if i wanted to be included in the interested parties.  she’s asking way too much for this house, with all its shoddy rehab-related quirks.  i do not want to move again.  do.  not.  want. 

we also signed up to deliver for meals on wheels this week, which starts later today.  i’ve always found it easier to get out of my own pity party by helping others.  sage is really excited about it, too. 

so, wrap up- things are hard, things are good, things are moving.  i think that’s about all i could hope for at this point.  right? 

my baby is five

Posted in autism, charm city craft mafia, crafting, musings, PDD-NOS on November 28, 2007 by askthesky

dear god, how did this happen?  last year, i wrote about her birth story.  i thought she would be my special needs kid, but it turns out that she’s in the clear and the one i thought i could relax about is struck with special needs at age 3.  sheesh…

birthday!  we started out at church, where the whole choir sang to her.  she loved that part, and told me later it was “the coolest thing ever”.  then we came home, had lunch, and dove into the super yummy gluten/casien free cupcakes i made, with GFCF icing, of course.  autism diet readers: i used a mix from cherrybrook kitchen- super good, and the buttercream icing recipe from Special Diets for Special Kids, but with ghee as the fat instead of margarine.  the icing was to die for.  the cake was ok- i was glad i stuck some gfcf dark chocolate mini-chunks in them right before i baked them (just 3 in each cake).  they gave it the little extra push it needed to take it from someone else’s birthday cake to YOUR birthday cake, if you know what i mean.  and i think you do. 

my child is special needs when it comes to blowing out birthday candles. 

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she’s working on it. 

then, we opened the present.   the present came from ms. small foxherself, who for some reason (niceness) decided to include gifts for zander and i as well, and first to open was mr. manboy.  here is a photo play-by-play of the action:

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wait, is this an…

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wheeeeeeee!

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for those of you who are not sarah, this is the most adorable stuffed octopus there is.  hands down.  and sarah, in case you didn’t know (and i think you didn’t), this is his new favorite animal, so your timing couldn’t have been better.  he has big love for the tentacle toy.  big love. 

then it was sage’s turn…

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mission accomplished. 

she’s named her inky, and no, i don’t know why.  the owl’s name is owl T.  again- ?  they are perfect, and now you all know where to go when you need a special gift for a special someone who happens to be very short.  small fox.  that’s where you go.   i am so cheeky tonight… must finish. 

ok, then we went to the park, according to the birthday lady’s wishes, and played in the leaves.  a perfect day, by all accounts.  i had to leave this one big, cause it’s so nice…

in other news, i finally connected with a local autism supermom, so now i know a lot more about all the DAN! doctors in the vicinity, and all about her kid’s digestive details, and i couldn’t be happier.   more on that as it develops…

also, don’t forget to come to Holiday HEAP!  free hugs at my booth when you mention this ad.  i mean blog.  😉 

nighty night…

i know, it’s supposed to be a craft blog.

Posted in autism, life in general, musings, PDD-NOS on November 5, 2007 by askthesky

but, i have to talk somewhere. 

so, i’ve now spoken with a few knowledgeable people who think that the gluten-free, casein-free diet (from hell) is not a must.  i am going to have z’s blood tested for those allergies before i spend all my money and sanity on the diet. 

in other news, i won a small battle with the city today, and i’ve been informed that they will, indeed, abide by the crystal-clear and strictly enforced law stating that my child gets free services for his diagnosed disorder.  and to think, all i had to do was threaten to call a laywer.  then, in a moment that can only be described as perfect, i opened the mailbox to find a summons for jury duty.  ah, legalistic society… i invoke your name only to burned by my own responsibilities…

in other news, crafting is happening, at an amazing rate, but as yet i have no photographic evidence of this.  i will get on that.  will do. truly…