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skysidhe 01-18-2009 10:20 AM

I know everyone had so many good words of wisdom.

I like these responses just because they are natural ways to cultivate child development.

As far as diagnosis, experts and public schools they need to get back to the basics. These kids were just fine in school 50 years ago before diagnosis and boxing kids in became some kind of a crusade.

That might seem strange for a special education provider to say but I do believe that kids with normal/high intelligence should just be let free a little more. I hope the current trends in school change alot for the better.


Quote:

Originally Posted by Beest (Post 512041)
having read all the other responses,

Normal is over rated, maybe you could get a diagnosis of some such, many of us could. I played with him, he seemed OK, he put his toys back in place when I moved them, but he didn't have a fit about it, we built some block towers too.

Cabin fever. It sounds like he's bursting at the seams and needs to get out and do stuff , with other kids. Anybody who knows our kids schedules, swimming, soccer, gymnastics, hockey etc. etc.
At that age I think there was a baby tumbling thing, and swimming of course.

Quote:

Originally Posted by Clodfobble (Post 512050)
Yeah, I signed him up for one of those baby tumbling classes, at The Little Gym. He enjoys it, but its primary benefit for him has been learning to take turns, stop playing with one item and move onto the next even if he's not ready, etc. It's been good, but for the money I don't think I'll do it again.

Learning how to take turns and knowing when to stop an activity even when not ready is so valuable. Why not work on those skills now because the public schools will so be ready to. I would, if possible go mainstream classroom if possible espicially if he is a bright kid and it seems he is.

Quote:

Originally Posted by monster (Post 512448)
the difference between the inflatable place and a gym class is that in the class he sees the same kids again and again and gets to make friends. There's no social aspect to the bouncy place, other than fleeting interactions with strangers. Try to find a playgroup of some sort. if you go regularly to the bouncy place at the same time, you might well find yourself hooking up with other moms with kids the same age and your kids might even play nicely together. Sometimes. This is how our playgroup got started and we (moms)still meet weekly, even though the youngest is now in second grade.

There kind of balance in parenting is so important for development. There should be more of it. More people who see the potential of a kid and let them develop in the most natural way possible. I wish I had been this kind of parent or had someone like them around because there is so much wisdom in what they say. I think. Perhaps a new trend in diagnosis and treating in coming.

Anyway, clod. You will be fine and your son too. Just be happy and play alot and make play a learning experience :)

LabRat 01-29-2009 08:58 AM

I did a quick Medline search for "Sensory Processing Disorder" and "Sensory Integration Dysfunction " but came up empty handed. Autism/Aspergers have tons of papers. This is the most recent review I could find. It's not available directly via ejournal, but I am requesting it and once I have it, I'll send you (and anyone else who PM's me) a copy. If you see any other articles you want, just let me know.



Good luck, and please let me know if there is anything I can do.

Quote:

Recent advances in autism spectrum disorders.
Charles JM, Carpenter LA, Jenner W, Nicholas JS.
Department of Pediatrics, Medical University of South Carolina, Charleston 29425-5670, USA. charlesj@musc.edu

OBJECTIVE: This review article provides an overview of the most recent developments in the literature regarding autism spectrum disorders including epidemiology, etiology, assessment, and management/treatment.
METHOD: A review of the recent literature was conducted using Medline and the search term "Autism Spectrum Disorders."
RESULTS: Autism Spectrum Disorders are more common than previously believed (1 in 166), and etiology appears to be multifaceted including both heritable and non-heritable factors. State of the art treatment includes comprehensive medical monitoring as well as behavioral intervention.
CONCLUSIONS: Current and anticipated federal funding, policy changes, and large scale research projects provide promise for increasing knowledge about Autism Spectrum Disorders.

Sundae 01-29-2009 09:34 AM

This thread is one of the many reasons this place is amazing.
Correction - the people posting here are some of the reasons this place is amazing.

Clodfobble 01-29-2009 11:20 AM

Since it got bumped, I suppose I should offer an update on things: The hyperactivity is much more under control, now that we have a better idea of what sets him off and what helps him feel more grounded. Turns out trips to the grocery store are weirdly therapeutic because he gets to ride standing up in the basket, and getting that swerving/swinging motion is supposed to be really calming (and the results are definitely observable on our end.) During the especially hellish time period prior to his diagnosis, it just happened that he hadn't managed to go to the store with me in weeks because of a variety of coincidental circumstances. Now I make up excuses to go at least every few days. We eventually had success in making his toys as heavy as possible like we were told to, but there were some failures at first. Let it be known that rice plus white glue will lead to mold. We had to throw out that collection of duplo blocks, but I filled the replacements with steel shot and glue instead, and those have worked beautifully. Also, no matter how confident you are that the thick plastic dinosaur will be water-tight after you seal it with hot glue, you will be wrong. Better to just fill it with steel shot from the beginning. Each time we returned a newly-weighted toy to him, you could tell he was exceedingly pleased with it. The downside is all this hefting weights will only make him stronger when he decides it's time for a flailing meltdown.

Quote:

Originally Posted by Labrat
I did a quick Medline search for "Sensory Processing Disorder" and "Sensory Integration Dysfunction " but came up empty handed.

Part of the reason is it's not an accepted disorder in the DSM-IV. The symptoms and treatments have been well-known for a long time, but they almost always present alongside the autism spectrum disorders, so it hasn't been given its own separate diagnosis. And indeed, he does have an autism spectrum diagnosis as well, but as I mentioned earlier, multiple diagnoses are good for insurance purposes, so for now we're acting like we don't know it's part of a larger problem. :)

As for the other symptoms, not a whole lot of progress can really be expected right away. We are pushing harder on making him say more complete phrases even if we know what he wants, and we're supposed to discourage the echolalia as much as we can. That one is hard for me though, because I am certain that part of the reason he's as social as he is is we have happily encouraged his communication up to this point, even though it's not a typical conversation style. The compromise is that rather than ignoring it, I try to instead act as if it is a normal conversation. "Oh yes, that's from TV show X. Do you like that show? It is a good show." I can tell he's not happy with this change though, and I'm trying to carefully walk the line between training him out of his abnormal habits while not overly discouraging him.

HungLikeJesus 01-29-2009 11:29 AM

Why don't you just get a grocery cart for home? They're free!

glatt 01-29-2009 11:29 AM

Quote:

Originally Posted by Clodfobble (Post 528023)
I'm trying to carefully walk the line between training him out of his abnormal habits while not overly discouraging him.

You are such a good mom!

Beestie 01-29-2009 02:20 PM

I think/hope I speak for the class when I say that we will not grow weary of reading updates so err on the side of posting more often.

lookout123 01-29-2009 02:28 PM

Clobble you are so insanely awesome.

footfootfoot 01-29-2009 03:09 PM

Quote:

Originally Posted by HungLikeJesus (Post 528027)
Why don't you just get a grocery cart for home? They're free!

really barking with laughter.

monster 01-29-2009 03:28 PM

you can modify them too. My ceramics instructor has one in his yard designed for streetracing and fitted with a circular saw blade on the front to clear the crowds...... but you could start small:

http://msp197.photobucket.com/albums...pping_cart.jpg

Griff 01-29-2009 04:39 PM

Quote:

Originally Posted by glatt (Post 528028)
You are such a good mom!

ditto that!

limey 01-30-2009 05:44 AM

Quote:

Originally Posted by Beestie (Post 528100)
I think/hope I speak for the class when I say that we will not grow weary of reading updates so err on the side of posting more often.

ditto that!

SteveDallas 01-30-2009 08:50 AM

Quote:

Originally Posted by monster (Post 528124)
you can modify them too. My ceramics instructor has one in his yard designed for streetracing and fitted with a circular saw blade on the front to clear the crowds......

Is he traveling to New York for the big race? Or is there a local equivalent?

monster 01-30-2009 05:19 PM

there's a local equivalent. I think he may have moved on from that, though -he's currently developing very expensive lightweight electric bikes.

Clodfobble 02-16-2009 04:38 PM

Today has been pretty sucky. But that might actually be a good thing.

As with any medical condition that's not very well understood, there are a ton of "alternative therapies" with no medical studies to back them up. Some actually have medical studies to disprove them, and some are just really hard to test. One of the most popular alternative therapies is the Gluten-free, Casein-Free diet, which falls into the latter category: it's really hard to have a double-blind study, because parents can't pretend they don't know what their kid is eating from day to day, and usually the only way to quantify symptoms is by the parents' reports. There have been two major studies, but one showed a correlated reduction in autism symptoms, while the other showed no correlation. Anecdotal evidence on the web seems to indicate in general that it either works astoundingly great, or doesn't work at all--which is reasonable; there are so many forms of spectrum disorders it's not hard to believe there could be different causes for different types. At any rate, it's widely conceded that the diet can't hurt you, so doctors will tell you to try it if you feel like it.

ANYWAY. The theory behind it is that the kid is unable to properly digest gluten (wheat), casein (milk), or both, and the result of partial-digestion is a peptide which, if it were to get out of the intestines, through the bloodstream, and into the brain, would function exactly like an opioid: i.e., autistic kids are actually high as a kite on narcotics 24 hours a day. The thing that struck me when reading the vast amounts of glowing anecdotal evidence ("my kid started the GFCF diet and suddenly began talking for the first time three days later, was potty-trained a week later, was diagnosed as no longer having autism six months later, etc.") was that, just like all opioids, these peptides would be highly addictive--and one of the hallmarks of children who had responded well to the diet was that they utterly craved the offending foods.

Minifob's diet is maybe as much as 50% dairy. He wants 3-4 different kinds of dairy at every meal, and it's always had to be the bargaining element: 'you can only have more cheese after you eat some more X.' I can't think of a single dairy product he has ever rejected.

So we went cold turkey on Saturday. Well, almost--milk hides in freaking everything, and in the process of figuring out which baked goods he can't have (answer: most of them) I forgot to realize that, duh, M&Ms are milk chocolate, and he gets those as a reward for having dry diapers. So he actually had one each on Saturday and Sunday before Mr. Clod pointed out (politely) that I'm retarded.

Sunday morning, 24 hours into (almost) detox, he actually said to me, "No ma'am, no banana," which is significant. No ma'am is what I say to his sister, and for him to A.) realize it could apply to someone other than her, and B.) choose to insert this extra phrase when he's already quite familiar with just saying "no banana" is a big deal. But maybe he was gearing up to saying it anyway though, he has definitely been using more words since going to therapy...

Sunday night he started getting edgy, and today he's been a nutball. In theory, that's actually another good sign, because there's supposed to be a withdrawal period. He hasn't gotten the shakes or anything :), but he does lay on the floor and ferociously scream when I tell him (for the hundredth time) that he can't have any cheese. And his general twitchiness notwithstanding, I'm pretty sure he said this morning, "This is a red spoon." He always identifies his spoon color, but the words "this is a" have never come out of his mouth before.

So. In another couple of days there should either be much more visible progress, or I'll be forced to admit that I've been seeing what I wanted to see for the last two days. I'll tell you this: while it would obviously be the greatest thing in the world to have discovered a magical switch that will suddenly clear his brain and give him an unobstructed path back to normalcy, a totally dairy-free diet is freaking hard to maintain. We basically can't take him to any restaurants if we're going to stick with this. On the other hand, it's not as hard as a dairy and gluten-free diet, so I'll be grateful if we don't have to go the extra mile and remove the second half from his diet as well.

Also: cheese and yogurt "substitutes" are the nastiest things on the planet. Not only did Minifob not want to eat them, I couldn't even stand the smell of them in the kitchen myself.

Griff 02-17-2009 05:55 AM

Good luck Clod. How are his bowel movements generally? We had several kids on that diet when I was working with this population. I don't have any info on it though both because we were kept blind, since we were taking data, and possibly because Dr. Romancyck has a great deal of ego caught up in the B Mod thing so even if one of the Grad students wanted to run such a study it might not see the light of day. We had one kid that I wished they'd tried it on since his bms were horrible and to me it seemed like he had digestive pain.

Pie 02-17-2009 07:28 AM

Clod, I love your approach. You look for evidence-based therapy & try out the low-risk possibilities. Best of luck keeping him away from the moo-heroin.

Is there any information on which dairy peptide might be responsible?

Clodfobble 02-17-2009 08:13 AM

Quote:

Originally Posted by Pie
Is there any information on which dairy peptide might be responsible?

I don't know. I know it's the casein I'm supposed to avoid, which is a pain in the ass because even things marked "non-dairy" are actually only missing the lactose, they still have casein in them.

Hi bowel movements have been very soft his whole life. The number of truly solid bowel movements he's ever had is less than ten total.

Perry Winkle 02-17-2009 10:16 AM

Sometimes small changes effect great results. The human mind and body aren't quite as well understood as the medical world would like you to believe.

My story is just anecdotal but might lend you some hope of finding a solution, even if this diet doesn't pan out. Super short, condensed version: I was hugely overweight and so mentally ill that I'd pretty much been written off. I changed my diet and started getting a little bit of exercise. Within 6 months I was off of the majority of the meds I had been on and was about to finish high school (something my parents and doctors thought I would be incapable of). Now, 7-8 years later I am in excellent physical and mental shape, have not only finished undergrad but also have a graduate degree and have done pretty well in the workplace.

So anyway, a little conscious change and experimentation (your's at this point) coupled with a human's natural drive to live (your son's) can do wonders.

LabRat 02-17-2009 10:57 AM

I remember watching Jenny McCarthy quite awhile ago speaking on Larry King Live about how a change in diet helped her autistic son. She had just published a book about it. Louder Than Words is the title. I never got a chance to read the book, but thought that it was very interesting.

One of the things that struck deep with me was after he was 'cured' she said he would say to her "remember when I was shy??" He was aware of the differences in his behavior, but couldn't control it.

Clodfobble 02-17-2009 01:14 PM

Many of the positive GFCF anecdotes mentioned that their child could now tell immediately if they accidentally ate the wrong food. One boy took a bite of the wrong cookie, and moments later told his mother, "The bad person is inside of me again."

Minifob bawled today when I told him again that he couldn't have any yogurt. Not a tantrum, he just sobbed. It broke my heart.

footfootfoot 02-17-2009 01:35 PM

Clod, you are an awesome mom. I had a long response written last night and then we had a meltdown and it got lost in the fallout. I think the hardest part is almost over. "They" say the more foods you introduce your child to at a young age, the wider their tastes will be later.

There are definite food issues here in this house and I am having a hard time getting my wife to accept that. She keeps thinking the inch's perennial congestion is due to the need to vacuum.

more later gotta go

OnyxCougar 02-17-2009 01:58 PM

I fought for YEARS with doctors and teachers/special ed admins about my son. My sister is a NeuroPsychologist (when my son was little she hadn't gotten her degree yet). She told me immediately that he was displaying Autistic symptoms. He was 3. Three Pediatricians REFUSED to test him before age 5, and blamed me for his behavior.

This is an example of behavior at 3:
It is 11:45am.

Son: Mom. Mom. Mom. Momomomom. MoooOoooom!
Me: What?
Son: (slurring, muffled speech due to multiple ear infections) Lunch?
Me: Yes, I'll make you lunch at twelve o'clock, after Blues Clues.
Son: Bnoo's Cnoos? (breaking into full voice singing) WE DAH FIGAH OUT BNOO'S CNOOS CUZ BE NARY SMAHT!!!
Me: Yes, we are. Go watch Blue.
Son: (runs [on his tip toes] away) HE DA MAIL, IT NEBA FAIL...
Me: (looks at my watch. 11:47.)
Son: (runs back up to me) Mom. Mom. MooooooooM Mommy. Mom. Mommmma. Mom!! MOMOMOMOMOMOMOOM!
Me: What?
Son: I some lunch.
Me: Yes, after Blue's Clues. At twelve.
Son: Twelb?
Me: Yes, on the clock, one two dotdot oh oh.
Son: oh oh?
Me: Yes, after Blue's Clues. oh oh.
Son: Benut Bunner?
Me: Yes, I'll make Peanut Butter and Jelly.
Son: oh oh?
Me: Yes, when Blue's Clues is over. A few minutes.
Son: Kay. WE DAH FIGAH OUT BNOO'S CNOOS CUZ BE NARY SMAHT!!!
Me: *sigh*

And the way he told me he wanted to watch Star Trek: The Next Generation was to sing the intro theme song.

We moved back to the states and got him into the Pre-K program, with the label of "Emotional Disturbance". Still no doc would tell us what we already knew: Autism. Even his teachers were telling me: this kid is Autistic. Echolalia, aversion to change, extreme difficulty transitioning to new tasks, tactile obsession (I made a nylon shirt for myself while I was pregnant, and it was his shirt. He did NOTHING without his shirt. Full on meltdown without the shirt. He would do this thing...put the shirt between his thumb and index finger and rub it...to comfort himself. Til he was 6.

Brushing teeth was asking for fingers to be bit off. I'm not kidding. He could not *tolerate* the feel of the toothbrush rubbing against his teeth.

By 10, after 6 years of occupational therapy, physical therapy, speech therapy and weekly behavior therapy, he was still in special ed, but his teachers were saying that he was too smart to be in special ed, but when trying to transition into regular classes, his behavior was such that it was completly disrupting all the other students.

At 13, we finally got a doctor to diagnose him as High Functioning Austism *and* Asperger's. There was a pilot program starting in our county led by NC-Chapel Hill called TEACCH, and they were starting a program for kids like mine: HFA/Aspies. Full regular classroom integration but each student has a "shadow" in the class with them, making sure they stay on task, don't run out of the room (which mine was known for), writing down homework, etc. Then one of the class periods was HFA class, where they help with the homework, and teach social skills, emotion identification, etc. We waited a year on the waiting list, and he got in the program in the middle of 8th grade. Only one school (elem, middle, high) in the county has an HFA class, so he gets to ride a special (not short) bus, picks up at the driveway, and gets met at the bus by his shadow.

Now at 16 (he just turned last week, I'm surprised I've stayed as sane as I have this long), He's a Freshman, and what used to be Cs, Ds, and Fs (not because he didn't know the material, but because he couldn't focus on the tests or write down his thoughts) he's getting A's and B's consistently.

He's still obviously "off" in social situations (he doesn't know what is appropraite to say and around whom you shouldn't say it) and he's not shy at all. He still does the "martial arts dance" at the end of the driveway waiting for the bus, and sings all the time. Even under threat of "I will send you to your room if you don't stop humming" (he HATES being by himself) he will still do it (because he doesn't realize he's doing it most of the time).

He's trying to find out what his humor is. Unfortunately, he's chosen to emulate mine, but doesn't really understand puns and non-literal ideas, so it's not going so well.

He's 6'2", and pushing 170, and shows no signs of stopping soon. I just bought him a pair of size 13 shoes. He's eating me out of house and hearth.

And although I'm terribly worried about whether he's ever going to be able to live on his own, or how he's going to function at a job (which he's expressed interest in getting), and about how much he's going to get hurt becasue he's SO gullible and a smart (mean) girl will be able to totally roll him...

But I can't imagine him any other way.

All this whole long thing was basically to say: I know what having a special needs kid is like...and at times it feels like you're going to tear both you and your kid's hair out. You'll cry and laugh and try new things and stay up on the research and fight and kick every step of the way. Sometimes you'll win, and sometimes you give up, for a little while (that's usually the crying part). Then you take a deep breath and start over.

I'm here if you need me, I have a great ear and a huge shoulder.

Hang in there, sweetie!

Beestie 02-17-2009 05:54 PM

Gee, a treatment plan that doesn't involve any meds. No wonder the doctors never heard of it.

Good work, CF.

Trilby 02-19-2009 08:51 AM

Clod---you are a wonderful mother. I admire you.

Clodfobble 02-19-2009 03:46 PM

Ugh. He's been weird. Some good bits, some worse-than-usual bits. Then yesterday he swung from great to terrible immediately after eating lunch (a sandwich on wheat bread.) I started to wonder, and realized I would never really be able to stop wondering... so fuck it. This diet is so hard already, we might as well just go full GFCF. Rip the bandaid off.

So far he's eaten a whole lot of refried beans on corn tostadas, and several varieties of fruit. Turned down the fake-Cheerios in rice milk after one bite, wouldn't even take a bite of the peanut butter sandwich made with gluten-free bread, which I baked my damn self after he went to bed last night. Oh, and Mr. Clod complained about the smell of the bread--not that it was bad, mind you, just "weird." He's since instant messaged me to let me know he can somehow still smell it at work and he thinks he's going insane. Yeah, me too, buddy.

But in the bad-news-that's-good-news department, Minifob was nice and grumpy about his new diet for the Early Childhood Intervention evaluation today, so he qualifies for "services." They want to do a bunch of stuff with pictures, some of which I'm optimistic about, like a posterboard with pictures of all the different foods he's allowed to eat. That will help me as much as him. Gluten is in fucking everything. Why does my turkey lunchmeat need to have wheat in it, you cheap additive-filling-space-wasting bastards?

Pie 02-19-2009 04:01 PM

Quote:

Originally Posted by Clodfobble (Post 536429)
Gluten is in fucking everything. Why does my turkey lunchmeat need to have wheat in it, you cheap additive-filling-space-wasting bastards?

You're going to be doing a lot of cooking-from-scratch.
Look into foods from Asia -- many cuisines are riced-based. Just watch out for the sauces (soy sauce is notorious for having wheat in it!)
If you're interested, I can hook you up with some non-wheat containing fairly easy recipes from south India. PM me...

Cloud 02-19-2009 05:14 PM

wow. all this is making me count my lucky stars, and wishing I had better words, better comfort, better ideas for you.

Aliantha 02-19-2009 05:25 PM

I'm with you there Cloud. I've wanted to say something, but really just don't have any of the right words. I don't really have any decent advice for Clod and co, but I suspect they're getting plenty anyway.

I will say that gluten free is a lot easier now than it was even just 5 years ago though. A couple of my cousins have GF diets and they don't do too badly.

My best suggestion is to try health food and organic stores. You'll get plenty of GF alternatives there.

LabRat 02-23-2009 02:26 PM

1 Attachment(s)
This weekend I was browsing the new non-fiction in our local library and came across this book written by a couple of experts in the field. When Your Child has Aspergers. I read it this weekend, and it seems to be a great resource, especially for friends and family. Concise and easy to understand.

jinx 02-23-2009 02:50 PM

Quote:

Originally Posted by Clodfobble (Post 536429)
Why does my turkey lunchmeat need to have wheat in it, you cheap additive-filling-space-wasting bastards?

I feel your pain, having had to eliminate dairy (casein and whey, not just lactose) from our diets when Ripley was born. And Pie is right on, you have to cook from scratch, eat simple/whole foods, and asian foods. It takes a while to get used to (we ate carrot sticks and lentils constantly until we got the hang of things) but then becomes normal. You'll all get healthier too.

Sundae 03-02-2009 01:39 PM

I know it doesn't help, but in the spirit of sharing, Mum & I are on a 90% cooking-from-scratch diet at the moment. I love it. It's so much quicker and easier than I ever remember cooking being. In my case probably because I'm not just cooking for myself, and it is my major contribution to the household (Mum & Dad both cook, but they are both difficult to be in the kitchen with when they do).

Of course any leftovers get eaten by three people and none of us work so I know it doesn't compare. But my parents do hate the smell of me boiling up beans and pulses. My Mum has walked into the kitchen numerous times during this process with the patented look of disgust on her face (the mouth turned down one, you know). And Dad chokes & coughs when I am frying onions and garlic. But when it comes to the meal, they enjoy the taste and compliment the food.

All I can say is that side of things does get easier and more pleasurable, and does take less time once it's part of an established routine. And even grim smells become accepted after a while.

Just keep reading what you can get your hands on and keep using Mom-sense. You've been wonderful so far.

Clodfobble 03-04-2009 05:24 PM

So, it turns out "ripping the bandaid off" is, ah, kind of painful. Surprise, surprise. Wheat was just too hard--and we weren't seeing any noticeable improvements like we had with dairy, so we gave it back to him.

But the dairy improvements? Hoo boy.

After his very first foray into sentences with "This is a red spoon" (at 48 hours off dairy,) he has continued to spit out new sentence constructions every single day. In the last two weeks he's used words like now, these, it's, hey, and I for the first time in his life. Overall, we've just been having stellar days around here. He is calmer (not calm, but calmer) and happier than he's ever been. His therapist marveled at his sudden shift in language and has said that by the time we finally get an appointment with the pediatric neurologist (not until April), he may not even qualify for the PDD diagnosis anymore. He still has a lot of the symptoms, most noticeably the echolalia and strict adherence to routine, but the change from my perspective is night and day. He has suddenly started engaging in pretend-play with his toys, is voluntarily wearing long-sleeve shirts on a regular basis, and last night he sat in his chair in a noisy restaurant for upwards of an hour while we visited with a friend from out of town. (We had come in two cars because it hadn't even been a question in our minds that I would need to leave the restaurant with him at some point. The baby was fussier than he was. It was mind-blowing.)

And as a confirmation that it's not coincidental, he did have a tiny amount of dairy last Tuesday, in the form of a white-chocolate-chip cookie. Wednesday, Thursday, and Friday he was terrible, the only bad days he's had since we cleared his system.

As I told lookout in a PM, I am officially a convert. Who knows how many unexplained diseases out there are really symptoms of food sensitivities? The results have been so dramatic, it's all I can do not to accost random people on the street and tell them about it. To be fair, I am still living in a certain state of denial: we were already feeding the kids separately because of Mr. Clod's work schedule, so he and I have not altered our diets at all, though we could probably stand to. But I'm hoping that will come naturally as the kids get older and I lose my motivation for dealing with multiple meals.

Aliantha 03-04-2009 05:28 PM

That sounds like great progress Clod. I'll bet the relief you're feeling is off the charts atm huh?

I'm really happy for all of you. You're a great mum. Keep up the good work. :)

classicman 03-04-2009 06:33 PM

Wow thats really good to hear. Amazing too.

xoxoxoBruce 03-04-2009 10:58 PM

Supermom! :D

LabRat 03-05-2009 07:55 AM

Fab. U. Lous.

That is awesome news! I am so happy for the whole Fobble family.

kerosene 03-05-2009 07:57 AM

That's excellent news, Clod. I am happy for you that you found a possible treatment.

monster 03-05-2009 08:00 AM

Excellent news, Fob. Amazing progress.

Sundae 03-05-2009 11:49 AM

I am so happy you've had a breakthrough Clod.

All I will say (and this may not well be welcome) is continue to keep a chart of food/ behaviour. It will help whether the current diagnosis is correct (as it seems to be) or not. In which case it will be invaluable

At the very least it might identify what he can and can't tolerate in terms of percentage/ amount/ origin. At some point your baby boy will be a teenager and an adult. The better records you keep now - and the food he can tolerate may change - the better he will be equipped for the future.

glatt 03-05-2009 11:57 AM

It's really remarkable that a diet change had such a profound impact. Simply amazing.

Decca 03-11-2009 09:26 AM

So glad to hear that the diet change is working for MiniClod. You're a stellar mom, Clodfobble... keep up the great work! I'm cheering for you, and your whole family :)

Clodfobble 03-19-2009 04:32 PM

I'm kind of bummed these days. If you buy into the seven stages of grief, depression is the last step before a healthy acceptance, so that's good, right?

Of course being in the depression stage means I've finally exited the denial stage. He had his initial screening with the school district for the PPCD (Preschool Program for Children with Disabilities) class, which basically functioned as yet another opportunity for an independent group of evaluators to tell me, "Oh yes, he has problems." There might, just might have been a small part of me that was still quietly insisting that we were still in red-flag territory, that he'd just have a little speech therapy and everything would turn out okay. I can neither confirm nor deny the existence of my denial. At any rate, the only question now is precisely which class would be best suited for him, so we go back for the big multi-hour evaluation in April. End of denial? Check. And either way, all these classes follow the school district's schedule, so we're still completely on our own for the summer. Depression setting in? Check.

Oh yeah, the summer. That time when my stepchildren descend upon my house for 6 weeks straight, throwing both us and them into chaos as everyone's established routines are chucked out the window. We usually send them to a day camp for some number of weeks, but the fact is I am available at home--so the question always becomes, how much money is my sanity worth? And that's just my annual level of stress, this year we get to add in new difficulties like, what the hell would I do with them while Minifob is in therapy? Can I really leave them out in the waiting room for an hour? But can I justify the cost of sending them to camp for a whole week just to avoid that dilemma?

Oh, and to top it off, my Early Childhood Intervention visitor (I refuse to call her a therapist because she does nothing remotely like therapy with him, she barely even interacts with him,) accidentally made me feel like crap. She asked if he was still on "the diet," meaning the full GFCF diet generally recommended for autistic kids. I told her he was only on a dairy-free diet, because going completely gluten-free had just been so incredibly hard, and we hadn't seen any dramatic changes like we had with dairy. She reminded me that it often takes several weeks for everything to clear the system, and she had even seen one child where it took a whole month, but after that of course the change was bordering on miraculous... she was just trying to be supportive, I know, but all I heard was, "Other parents are dedicated enough to make their children healthier, why aren't you?" If there were a way I could know for sure that it would help, I could do it, I know. It's just the possibility that it might do nothing at all that makes it so hard to consider attempting it again. She suggested getting him allergy tested--but then readily acknowledged that the skin prick tests rarely show anything conclusive, because obviously if there were big skin reactions to things he's eating every day we would be seeing it. We could demand blood tests... oh, but those are often inaccurate in children under 6. Really, the "easiest" thing is just try it (indefinitely, of course!) and see if there are improvements. Yeah, easy for you to say, lady. You don't have to deal with the kid who writhes on the floor wailing "Yellow" for an hour because I won't let him have his standard (yellow) Eggo waffle for breakfast.

lumberjim 03-19-2009 05:26 PM

Quote:

I told her he was only on a dairy-free diet, because going completely gluten-free had just been so incredibly hard, and we hadn't seen any dramatic changes like we had with dairy. She reminded me that it often takes several weeks for everything to clear the system, and she had even seen one child where it took a whole month, but after that of course the change was bordering on miraculous... she was just trying to be supportive, I know, but all I heard was, "Other parents are dedicated enough to make their children healthier, why aren't you?" If there were a way I could know for sure that it would help, I could do it, I know. It's just the possibility that it might do nothing at all that makes it so hard to consider attempting it again. She suggested getting him allergy tested--but then readily acknowledged that the skin prick tests rarely show anything conclusive, because obviously if there were big skin reactions to things he's eating every day we would be seeing it. We could demand blood tests... oh, but those are often inaccurate in children under 6. Really, the "easiest" thing is just try it (indefinitely, of course!) and see if there are improvements. Yeah, easy for you to say, lady. You don't have to deal with the kid who writhes on the floor wailing "Yellow" for an hour because I won't let him have his standard (yellow) Eggo waffle for breakfast.
http://www.ehow.com/how_2307201_make...e-waffles.html

that's not a rick roll

clobble....you have to try the gluten free thing. you know it. thats why it makes you feel bad.

Im sorry...im not trying to make you feel bad....but cmon.

kerosene 03-19-2009 05:41 PM

:comfort:

I am sorry you are feeling down, Clod. I don't truly know what it is to cope with this kind of situation, but I can imagine it would be something I would not easily cope with. You are doing magnificent, however. Your dedication and strength in this difficult time are showing through even just in your text. Don't give up. Your little boy is a lucky, lucky kid, you know. And you will get through this. Maybe it feels like your patience is beyond repair or that you just can't take another day. If so, remember that every day...every moment is fresh. Take a few minutes every day to just breathe. Take some time for you...do something special for yourself, if you can.

Feel free to use PM if you need someone to talk to.

I can relate to the step kids coming for the summer. We also have my husband's children in the summers and it can be taxing for everyone involved, trying to adjust to the differences in households, trying to recalibrate everyone's understanding of how we do things in our house, etc. And I am available to watch the kids, yet, it is usually a stressful ordeal. Last year I put together a weekly schedule which included themes and activities. I posted these schedules on the wall, so the kids knew what we were going to be doing on any given day. It seemed to help diffuse some of the chaos.

Beestie 03-19-2009 06:54 PM

Quote:

Originally Posted by lumberjim (Post 546995)
ehow.com/how_2307201_make-gluten-free-waffles

Making the waffles is the easy part.

Trying to get them back in the SPONGE BOB SQUARE PANTS MEETS SPIDERMAN WITH WALL-E AND TICKETS TO DISNEY!! waffle box without miniFob seeing you is the hard part. :-)

Clod - don't let the so-called support people get you down. You know what's best for your son and you know what your limits are. Do your best and ignore the know-it-alls. Your son needs you more than all those bozos put together and he's a lucky kid to have you taking care of all this.

I know this has to be back-breakingly hard - I just hope you and mini-Fob are able to steal a couple moments during the day that can only happen between a mother and her son. Those times can make up for a lot.

Clodfobble 03-19-2009 07:04 PM

Quote:

Originally Posted by lumberjim
http://www.ehow.com/how_2307201_make...e-waffles.html

I currently have two different kinds of gluten-free waffles, one of which was homemade, and two additional kinds of just-dairy-free waffles in the house. He will eat none of them.

What I have available next is yet another kind of gluten-free baking mix and some yellow food coloring, because if they're bright freaking yellow that may help appease him--but I can't do anything about the fact that the only kind of home waffle iron I could find was either square, or hugely round like a Belgian waffle, and neither of those are the "right" shape.

We did try the gluten-free diet for three days, and I was reduced to tears every single day. I just want proof it's going to be worth it, which is something they can't give me.

HungLikeJesus 03-19-2009 07:15 PM

It's a lot like the climate change situation.

lumberjim 03-19-2009 08:36 PM

cant even imagine....sorry if i came off wrong...

we think about you guys a lot....i hope you figure it out clobble

monster 03-19-2009 08:42 PM

Oh Fob...... :(:(:(

You and yours are always welcome to come up to Michigan for a cooler week or so in the summer if a reasonably cheap (althoug distant) getaway would help

monster 03-19-2009 08:45 PM

Can you do the gluten-free diet by not doing subsitute foods at all to start? using potatos in various forms for the "stodge" of the meal instead of bread, pasta etc? Does he like fries?

What does he like to eat?

Clodfobble 03-19-2009 10:34 PM

Quote:

Originally Posted by lumberjim
sorry if i came off wrong...

No worries, I wasn't ranting at you. It's just general frustration. Today was actually really good--he started off the morning deciding he wanted cheerios instead of a waffle, so we got to avoid that whole debacle. Someday he'll forget the concept of a yellow waffle... someday.

Quote:

Originally Posted by monster
Can you do the gluten-free diet by not doing subsitute foods at all to start? using potatos in various forms for the "stodge" of the meal instead of bread, pasta etc? Does he like fries?

What does he like to eat?

He's been steadily scaling back since he turned two. Mac & cheese and pizza are gone without dairy... burgers and sandwiches are still okay in general, but most commercial bread products have dairy in them so we have to check... he'll do dairy-free chicken nuggets, spaghetti, and tostadas with refried beans. And that's basically it. Of those, only the tostadas with beans survive going gluten-free. (He already rejected the GF chicken nuggets and GF pasta, multiple times.) You're right in general, most of the people who have done the diet say don't even bother with the substitutes, just find one thing they can eat, and let them have it at every meal for however many months it takes for them to forget what all the good stuff tastes like.

jinx 03-19-2009 10:43 PM

My kids like these mac and chreese products. The penne is brown rice pasta.
Can you do goat cheese?

Clodfobble 03-19-2009 11:08 PM

Supposedly not, nothing with casein. The one substitute he has gotten used to is rice milk, so we're good for cereal at least. I'll try the mac & chreese things, thanks for the link.

classicman 03-19-2009 11:20 PM

Good luck Clod - I have nothing to offer other than well wishes. :(

monster 03-20-2009 07:07 AM

Quote:

Originally Posted by jinx (Post 547143)
My kids like these mac and chreese products. The penne is brown rice pasta.
Can you do goat cheese?

What you need is that packaged up with kiddie TV charaters on the front. Those guys in the blue jumpsuits that he was for Halloween. Then leave it lying around until he's begging for movers' mac (or whatever they were called....)

Clodfobble 03-23-2009 10:38 AM

Son of a bitch
 
My toddler got high this weekend.

We had a miscommunication with one of his Sunday School teachers--they rotate every two weeks, and while we'd had a long group email thread with all of them about his new diet, this particular one doesn't ever check her email and apparently was never following along at all. So this Sunday was her day, and she gave him cheddar goldfish crackers for snack. Two whole cups full, because of course after the first half-cup he demanded another one, and another, and after they finally cut him off at four servings he collapsed to the floor in a junkie rage... I knew as soon as I came to pick him up that something was wrong, because he was over in the corner spinning a toy car two inches from his face, and he hasn't done that in weeks.

Anyway, it's been sorted out with that teacher now, and she was deeply apologetic when she found out what she'd inadvertently done. But in the meantime I've got my old nutter back for at least 3-4 days until it clears his system. I had to shut off the water to the kitchen sink at the valve, because he couldn't be persuaded away from the faucets and I was terrified he'd discover the little black water gun handle (who the hell uses that thing anyway? What a stupid feature.) Now he's finally moved on to watching Cars, just like the old days:



Ah, hindsight. I'm eagerly awaiting the time when it becomes less bitter, and more funny.

BUT! The silver lining is this event finally convinced Mr. Clod that the dairy thing is real. Before, he was just sort of taking my word for it, in the way that husbands don't question their wives when it comes to the children. But this, he saw with his own eyes. So now he's enthusiastically on board when I start questioning things like whether Minifob's skin lotion has dairy in it (it fucking DOES) instead of just nodding politely.

And in other good news, I think Subsitute Waffle v. 5.0 (that's the new homemade baking mix with yellow food coloring added) has been deemed acceptable. We'll see if he changes his mind in the next few days, but he's eaten three of them so far. I think we finally have a dairy-free waffle solution, and just as a bonus it happens to be gluten-free too.

Sundae 03-23-2009 10:57 AM

Clod, you are wonderful.
As is your boy.
I know people here think I hate the kinder, but if you ever make it over here, you are so welcome.

And saying all that, can I just congratulate you for staying sane & not killing him?
Said with love.

classicman 03-23-2009 11:03 AM

Quote:

Originally Posted by Sundae Girl (Post 548689)
And saying all that, can I just congratulate you for staying sane & not killing him?
Said with love.

As a father of three - thats exactly how I feel. OMG - your patience absolutely amazes me - you deserve a crown and prizes and and and stuff.

lumberjim 03-23-2009 03:26 PM

prizes fo sho


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