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-   -   My Kid is a Damn Nutter (http://cellar.org/showthread.php?t=18924)

Pete Zicato 01-02-2011 02:39 PM

Quote:

Aaron Donnell, an allergist and pediatrician at Children's Memorial Hospital and Illinois Masonic Hospital, said that if parents have questions about attention-deficit disorder, he tells them that skin- or blood-testing won't help, but they can try removing gluten, sugar, dyes or preservatives from the child's diet. "At least half get some improvement by adjusting their diet," he said.
From this article in the Chicago Tribune. Sounds like a significant statistic to me.

Clodfobble 01-02-2011 02:50 PM

Most doctors familiar with the subject believe ADHD, as well as some forms of social anxiety, to be at the mildest end of the autism spectrum. It's the same types of brain damage, just less of it.

OnyxCougar 01-04-2011 04:06 PM

Clod, it is shit like this that pisses me right the fuck off.

If we aren't TOLD what is in a product, how can we avoid it??

I am SO pissed off right now!!

How can it be certified organic if they are using artificial GMO sweeteners in the FOOD?

*growls*

ETA:

Quote:

In 1998, Monsanto applied for FDA approval for a monster molecule, “based on the aspartame formula” with one critical addition: 3-dimethylbutyl
This says that 3-dimethylbutyl is

Quote:

Suspected:
Neurotoxicant HAZMAP
Respiratory Toxicant RTECS
Skin or Sense Organ Toxicant RTECS
NIOSH




I fucking hate people.

footfootfoot 01-04-2011 04:32 PM

Sucks, but remember, USDA organic is meaningless and has been since the gov got involved. It was a way for big agri biz to get a piece of the 2 or 3% of the market share they felt they were losing to genuinely organic products.

Pico and ME 01-04-2011 04:44 PM

I do my best to stay away from anything sweetened artificially and also organic labels - I dont trust them at all.

HungLikeJesus 01-05-2011 01:58 AM

I agree - organic is for suckers.

Griff 01-05-2011 06:30 AM

We had a parent meeting after class yesterday to follow up on an out of control kid (too many environmental issues to list). Anyway the child's doc tells mom to reduce sugar... which apparently means load her up with aspartame... go team! So now even if Mom had a higher functional literacy the government want that shit in her food.

Stormieweather 01-05-2011 10:38 AM

No added sugars or sugar substitutes. No artificial flavorings or colorings. No preservatives. No GMO's. No chemical additives whatsoever.

I follow those rules and believe that most of my food is reasonably healthy, as are my children. Sometimes, the only way to find products that follow these rules is by checking the organic market. I work two jobs, I'm not adverse to a little processed food, I just want it without all the crap in it. Ie: I buy Chicken Nuggets for a treat for my kids. At $7 a box, they are definately just for emergencies/treats. But I don't insist on only eating organic foods...I know the labels and the FDA lie.

Jackasses...

Pico and ME 01-05-2011 10:44 AM

I found it interesting that they originally submitted their request during a democrat administration but didn't get it approved until there was a republican in the white house. Not that democrats aren't corruptible too, but republicans (and especially the ones now) always seem to let corporations do whatever the fuck they want, food (or any other safety for the public) be damned. Pretty soon 'snake oil' is going to get FDA approval too...just wait and see.

glatt 01-05-2011 10:52 AM

We have started buying the "organic" milk in the grocery store. It was something that I was a little hesitant to do because it's more expensive, and I wasn't sure there was any difference.

Then we did a side by side blind taste test. It tastes noticeable better than regular milk. It's remarkable, really. The 1% organic milk tastes as creamy as the 2% regular milk. Maybe even a little creamier than that.

I don't know what the "organic" label means for milk. I don't approve of antibiotic use in livestock, and certainly not growth hormones for increased milk production. If the "organic" label means those things aren't happening, then I'd be happy.

footfootfoot 01-05-2011 12:48 PM

The organic label may not mean those things Glatt. There are some farms that have stricter standards than USDA organic who are not certified organic.

Stonyfield Farm and Butterworks Farm are two good dairies. Organic Valley is a giant behemoth wearing the organic disguise. (According to a pretty easy-going organic farmer I know)

Clodfobble 01-05-2011 01:36 PM

When my kid eats organic strawberries, he poops poop. When he eats non-organic strawberries, he has very loose stools with giant, quite recognizable chunks of undigested strawberries. The organic label on a processed product can mean something, or it can mean nothing. But when it comes to fresh produce, the definitions are clearer and more meaningful.

It's not just pesticides on the outside, either. Buy a regular banana, and an organic banana, and place them side by side on your counter. The regular banana will spoil in half the time. The chemical fertilizers they use to make them ripen faster are still inside the fruit speeding up the process, even after it's off the tree.

footfootfoot 01-05-2011 02:48 PM

The bananas also taste differently.

Pico and ME 01-05-2011 02:51 PM

So then, fruit labeled as organic in the grocery store produce section can be considered legit?

If that is so, I will try some.

Stormieweather 01-05-2011 03:29 PM

It's hard to identify true organic foods - I would guess that larger chains would be more likely to carry certfied organic foods. In a farmer's market situation, it can be tricky, because...just like the FDA, people lie.

Here are some questions to help you identify the real organic farmers from the scammers - How to find a true Organic farmer<---this is a word dc.

Pico and ME 01-05-2011 03:35 PM

Thanks Stormie, I saved that.

Clodfobble 01-05-2011 04:33 PM

The best thing to do is talk to the produce guy at your grocery store. You ought to be able to get a feel for how seriously they take the process of vetting their organic suppliers. For example, one of our produce sources is a kind of enhanced CSA (we are given a certain amount of flexibility in what we want to order from the local farms each week, it's not completely on the whims of what's available.) A lot of the stuff they include isn't actually certified organic, because the process to get certified is suprisingly expensive. But this thing is run by a bunch of dedicated hippies who have personally visited each farm they source from, and confirmed for themselves that organic practices are in use even if the certification isn't in place yet. Likewise, they have refused farmers who are certified, but have other practices the hippies disagree with for one reason or another. I have decided I trust these people with my food, and certifications don't have to enter into it.

Pico and ME 01-05-2011 06:21 PM

Ha...I like your store. My store employs stupid 20yr olds. Its a waste of time to ask them any question.

ETA: Ummm, not all 20 yr olds are stupid, like most the ones that post here.

Pete Zicato 01-06-2011 10:37 AM

Quote:

Originally Posted by OnyxCougar (Post 703276)
Clod, it is shit like this that pisses me right the fuck off.

If we aren't TOLD what is in a product, how can we avoid it??

I am SO pissed off right now!!

This is bad news for me. Nutrasweet/aspartame makes me violently ill. I wonder if it will affect me after it's filtered through a cow.

skysidhe 01-06-2011 07:06 PM

I can't drink too much aspartame either. My son has no problems with it though, but he can't have too much sugar. He monitors that pretty closely. He also has the gift of being able to stay up all night on a diet coke. ( gift = sarcasm ) I just wish it worked like that for me.

Sundae 03-19-2011 09:34 AM

I have to write a Social Story for Tiger this week (my homework)
Searching the internet for examples - yes, I'm struggling.
Then I thought to search the Cellar and of course this thread came up.

Hurray for the Cellar!
Still struggling though.
His autism-spectrum diagnosis is generally accepted but not medically/ officially confirmed. His "Statement" is mostly about speech and language issues, although it does touch on food and social skills. But he's certainly "high functioning".

So the suggestions made by his Speech Therapist aren't completely appropriate. I'm going to try to talk to Mrs P (teacher) before next Thursday (next appointment) because I know she's familiar with both Social Stories and the cub.

This is all about giving me a toolbox of skills for when they cut his hours with the ST so I need to understand this, as opposed to getting it right once and getting a pat on the back.

Clodfobble 03-19-2011 09:41 AM

When social stories are done right, they're awesome. Most of them suck. See PM...

Sundae 03-19-2011 09:49 AM

Gotcha. Thanks.

Griff 03-19-2011 09:52 AM

Sundae, I'd limit the story to one situation at a time. I haven't done a lot with them but we have one successful bathrooming story in place right now. The child didn't feel safe using bathrooms away from home, so the story keeps coming back to "I'm safe".

Sundae 03-19-2011 10:02 AM

Griff, part of my trouble is coming up with an appropriate story.
Tiger doesn't seem to fit into the right boxes.
I'm not criticising the idea, or the system, it's just the stories I've read are all over the place. That's a technical term.

Clod sez some of those on the web aren't the best examples.
She's going to email me some that worked.
When I have a good example, I'm sure I'll be able to apply the idea better.
I will become A Teller of Stories.

Thanks for your input.
I really shouldn't have wasted half a day "out there", I should have started at home.

Clodfobble 03-19-2011 10:24 AM

We mostly only used them to help him know what to expect in a new situation, rather than to teach a specific skill. But either way, most generic ones are just bad cartoons and imperative statements, and that ain't gonna cut it.

Sundae 03-22-2011 04:41 PM

The school Special Educational Needs and Disabilities Co-ordinator had a scheduled meeting with me today.
To help me with the Social Story and have a general catch up.
She came into the classroom, took away the instructions I'd been given AND the draft copy of the Story I'd written, and said she's get back to me tomorrow.
I had actually asked for her help, not a critique, I'll get that off the Speech Therapist on Thursday.

The SENDCO hasn't even looked at the notes I keep on the Tiger. No-one has. I could be writing down any old shit. "Tiger was happy today! It was all, like, double rainbows! Yay! I'm not sorry about his finger!"

Clod, you helped me realise it was about learning to use the format, not immediately coming up with a necessary Social Story. Because at present I'm not sure that's up to me. Although you'll see that given the above, I am ambivilant as to where the boundaries are drawn.

Mrs P just read the exmaple and nodded and said (sounding dubious to me) "Okaaaaay."
But what can I do?

I love my job.
I love the school.
This is a challenge and I will overcome it.
Just as a minor moan, I kinda wish I'd been able to come into this without being known to the staff (apart from the fact I wouldn't have the job!)
I feel I've been dunked a little bit.
No spare time to interact with the teacher/ TAs unless I start before they do - and that is their downtime before the day starts anyway. And no real time for questions/ discussions except my halfhour lunch, which would be fine by me - except shovelling in food - but given their other commitments, not really fair on them.

I get a detailed timetable every day, but usually my 1:1 time with Tiger is up to me.
Sometimes it's hard to gauge what time will be least distracting for him/ will make him most amenable. The class timetable is scheduled so group work/ reading and choosing time is split evenly. I have to shoehorn in time with the cub and still ensure he enjoys the sessions.

Good news there though. He has now started approaching me asking if we are working together. I think this might be because he does enjoy our sessions. I've made them as sensory as possible. And of course he appreciates routine. Sadly, I had to make some time up the other week because I was ill (well, I volunteered to) and he became used to me being available in the afternoons. Only one week, but it grieves me that he is now asking after lunch whether we will work together...

Anyway.
This all sounds like MOAN, MOAN, MOAN.
Maybe it is.
but maybe everyone needs a moan now and then.
This is something I am delighted to be working on, and I know it could never be a journey of a single step.
Everyone is friendly and would probably be horrified to know I'm probably not as secure as I appear.

limey 03-22-2011 04:46 PM

SG, no-one (and I do mean no-one) is as secure as they appear. Remember that.

skysidhe 03-22-2011 05:35 PM

Quote:

Originally Posted by Sundae Girl (Post 717481)
I will become A Teller of Stories.

Thanks for your input.
I really shouldn't have wasted half a day "out there", I should have started at home.


I agree with you! You are a great story teller.

Social stories are short, concrete,relevant.

They can be about sharing, helping, saying please, a specific feeling, waiting in line at lunch, what do do when the bell rings, being quiet in the library, any any thing you think is will apply to his situation.

skysidhe 03-22-2011 05:53 PM

This website has some examples. I find them too wordy but this one has great photos. It does state this is for an older verbal child. You could modify it, take the references to the other motorized objects out and just put labels or one short sentence.
http://www.child-autism-parent-cafe....restrooms.html


I like these. They are basic and you can tweak them.
http://www.polyxo.com/socialstories/

Sundae 03-23-2011 04:14 PM

Thanks for those Sky.
Also had great help from Clod via email.

Yesterday the SENDCO came and took my draft Social Story from me and as yet hasn't returned it.
Given that all I wanted to do was talk through it with her, this is not particularly helpful.
The good news is I thought about it and worked on it for a couple of days (on and off) so can rewrite it in an instant if I don't get it back before Tiger's Speech Therapist comes tomorrow.
I also have one I think is more relevant, and regardless of what the SENDCO says about the first one I will submit the new idea as a virgin product to the Speech Therapist. That way I get get her perspective from scratch.
I have a horrible feeling Mrs L will just dash in at the last minute with "corrections" which is not what I want at all.

Sundae 03-24-2011 04:23 PM

Guess what? Mrs L had in fact "corrected" my first draft.
And she had it to me by the generous time of 13.15. The Speech Therapist arrives at 13.30.
And she had split it into two separate issues, because she knew what I was trying to get at, but it was a bit jumbled.

The fact she split it into two issues - I will wear my coat outside, and I will share my toys and games - means she didn't see what I was trying to get at at all.
The coat statement was a descriptive sentence - Tiger loves his coat and associates it with the good things in life - mostly running and sometimes falling over. And being allowed to raise your voice.

The point was trying to get him to do some non-physical work with me before outside before he went on the obstacle course each day.

AND she used a completely different way of writing it out, using a single icon for every word, making it into a full page which looked like cave paintings. Which is NOT helpful as a preparation for going into a meeting with someone who has asked me to do it another way entirely.

So. Very cross.
Obviously the Social Story was jumbled to her, so it's nowhere near perfect. I wasn't expecting it to be. But I did not "submit" it for grading and certainly not to be rewritten, I asked to sit down and speak her her about it. Twice in 5 days. I have the benefit of working with Tiger daily - she made assumptions in her rewriting based on the statement made in July 2010. Not good practice.

I'm not saying she doesn't know her job.
I'm saying she doesn't listen.
And she doesn't work to a timeframe that is reasonable for other people.
I would far rather she had said, "I really don't have time this week. Can you speak to the ST at your appointment. I'll schedule a catch-up with you the week after, so if you have any more questions at that point I can help."

AND.....!
(not about Mrs L this time) the Speech Therapist didn't show up either!
No word to me, but then the Office was empty all afternoon - for all I know the ST could have been trying to call me.

Oh and finally - I was promised worksheets for the cub.
I was supposed to get them as usual last Thursday but the ST forgot. Fine, it was a mistake, of course it happens. But she said she would put them in the post. I asked at the Office every day - nothing. In the end the secretary suggested I ask Mrs L, as it may have been in with the info she gets from County, which comes in a sealed wallet through the internal post (because it deals with sensitive issues for some children).

Mrs L said not to worry, she could get me some photocopied from the regular visiting ST.
Again, got them today at 13.15.
One workbook, way below Tiger's current competancy.
No, I don't expect her to be psychic, but if she didn't know she should ask. I'm in the same place every single day until 13.00 at least, I'm easy to find. It didn't occur to me that there are many different levels of worksheets. Of course there are. But I'm learning on the job.

I'm happy to work as hard as I can.
I just don't deal with frustration very well. And today I felt like I was playing Blind Man's Buff. In Wellingtons and gardening gloves.

My GRRRRR is now over.

I've been working on prepositions using a whiteboard and pen.
He likes my drawings and the stories we make up about them. So it's all a part and parcel of teaching pronouns anyway, talking about the Fat Old King and the Skinny Witch or the noisy female cat and the quiet male dog.

All out of my system.
Tomorrow is another day.

And after all in that extra hour I got the see the Jelly Party which I would have missed otherwise.

Clodfobble 03-24-2011 07:13 PM

Quote:

Originally Posted by Sundae Girl
using a single icon for every word, making it into a full page which looked like cave paintings.

:eyebrow: I don't know your Tiger cub at all. But from what you've said, this sounds way below his functioning level... some kids need this kind of thing, no question. Minifobette still does. But not a verbal child who is inclusioned.

Sundae 03-26-2011 06:41 AM

Okay.

All my Grrrrrs were resolved and I left school yesterday feeling soothed and settled and most of all - positive.

I had a 30 minute session with Mrs L which went SO well.
I do wish we could have had it before I supposed to see the Speech Therapist (who did leave a message apparently, but it wasn't passed on. My teacher got the apology for that rather than me, but I'm happy to accept it) but due to circumstances it turned out okay.

The confusion was due to the fact Mrs L expects to see the issue in the first sentence.
This is not clear in the notes I was given or in the examples I've read, but it does explain why she thought the coat was the important point.

The icons were simply to introduce me to a program called Communication through Pictures (or somesuch).
It is highly adaptable and you can remove or change icons at will, meaning there might only be one per line, or the icon is larger than the text, or text larger than icon etc. It is based on the idea that children on the autism spectrum are visual learners and I can see it can be used in so many ways.

I came away from the session so much better informed - not just about what I was trying to do re social stories, but also about Tiger's behaviour. No, she doesn't know him, but I was ignoring the fact that she has far more knowledge of children with his type of condition than I have. The worksheets were unsuitable, but she fully supported the ideas I'd been using and came up with some wonderful suggestions.

I don't feel bad about venting here.
I needed one to one time with her, and once I had it things changed completely.

Thanks for letting me hijack a little.

xoxoxoBruce 03-28-2011 03:05 AM

Since you are new at this, like you said promoted from within rather than coming in unknown, she probably is underestimating you. She doesn't know how hard you've worked, seeking advice outside on your own time and all. You probably should be more aggressive on keeping her up to speed with what you're doing. You know, I may be wrong, but it almost sounds like she doesn't really care if there's good results for the kid, as long as you're putting in the time with him that's prescribed.

Oh, and don't doubt you're doing ok, 'cause you're doing great.:thumb:

Clodfobble 04-11-2011 12:50 AM

I keep starting to write an update, and then get bogged down in trying to explain all the backstory, and include all the details, and before long I run out of energy and just give up. So I'm going to try to just stick to bullet points and see how far I get.

--Both my kids have spring birthdays, which means their annual ARD meetings happen right about the same time. This is a legal proceeding where the school and I have to agree on their educational goals for the next year (since it's generally accepted that they won't be following the standard curriculum and/or need additional skills taught, all special ed students have an Individualized Education Plan, or IEP.) We have thus far managed to avoid having an adversarial relationship with the school, although that's rare and probably can't last forever, because their primary concern is to spend as little money on my kids as possible. We may have to escalate from passive-aggressive to plain-old-aggressive soon, as I want the after-school bus to take Minifobette to therapy rather than home, and they are thus far refusing. They have no legal standing for this and they know it (and it's only 7 miles, fer Chrissake,) but they are stalling, and I may be forced to put up the money for a legal advocate to prove to them I'm not backing down.

--Minifob's ARD is not complete but has so far been more amenable than his sister's. He is being fully mainstreamed with minimal support options being kept open, but no aide or resource pullouts anticipated. He's been inclusioning in the class of his future Kindergarten teacher since February, so she's very much in a position to know if he can hack it socially/academically while also not disrupting the class, and the answer is he definitely can. He came home the other day and showed me how his "big friends" taught him how to play Rock Paper Scissors. I'm so proud of my little monkey.

--We go to see our new gastroenterologist tomorrow, the one who's in the top of his field and has a very long waiting list. The bad news is, as a gastroenterologist who only sees autistic patients, he is under a huge amount of political scrutiny, thus it's pretty much a given that any child who walks through his doors is going to have to get scoped. He has to document beyond a shadow of a doubt that any child he treats does, in fact, have intestinal disease and damage. On the other hand, our overly detailed medical records get to contribute to the growing body of proof, so we get to feel good about that I guess. How much insurance is going to cover is debatable, but we figured if we were going to hit our out-of-pocket maximum, we might as well do it early in the year and get the second kid done for free. I'm really, really excited to see what our overwhelmingly comprehensive pre-appointment lab work shows. Some of the tests included things any other doctor would be far too terrified to test for... like measles antibody titers. If the titers are sky high (that is, enough to indicate not just basic-level immunity but rather current infection,) then he will do a series of biopsies during the scope to try to document the presence of live, vaccine-strain measles infecting the gut. In that case, we would not only get to add to the growing body of evidence, we could also be prescribed antiviral meds that could dramatically improve their symptoms (likely only Minifobette's, but you never know.) Of course all the other standard GI meds will be at our disposal too, including (hopefully) long-term antibiotics for Minifobette. We're not even going to discuss the current mucous situation with her; suffice to say it is horrifying.

--One of the fascinating things I witness on a daily basis is the difference between various autism sub-communities; not just biomedical vs. traditional, but things like Asperger's vs. "regular" autism. I find myself increasingly pissed-off by the Asperger's message board, because these are people who have convinced themselves that they have miniature Einsteins, and they are not at all interested in helping their children improve their very real deficits. Instead, every failing is cited as further evidence of their brilliance, and they send dozens of messages back and forth each day on topics like how to get it in their child's IEP that he doesn't have to turn in homework, ever, because he has a disability and it's not fair to make him do it. Or how to make the school pay for his private sports team membership, because it's critical to his social development, which is part of his disability and therefore the school's problem. People like this are the reason that there's not enough money to drive my daughter a couple extra miles to the desperately-needed therapy that I'm already paying for.

--On a similar note, the stupidest thing you can ever say to someone who tells you their child is autistic is, "Wow, congratulations!" Yes, I have actually been told this by well-meaning but idiotic people. Twice.

Griff 04-11-2011 07:45 AM

I'll be writing Annual Reviews all week for my kids. We actually got a one-to-one aide for next year for a kid last week but getting money out of the county/district is going to continue to be a hammer and tongs job.

Side note my Russian friend is going to attempt to build a fencing program for kids with autism for his new salle. Sounds like a big challenge.

Clodfobble 04-11-2011 10:15 AM

Quote:

Originally Posted by Griff
We actually got a one-to-one aide for next year for a kid last week but getting money out of the county/district is going to continue to be a hammer and tongs job.

Your kids are lucky to have you fighting for their side. Our teacher is a truly excellent teacher who cares very much about the kids under her care, but she leaves all the fighting up to the parents. She's not necessarily on the school's side either, but she is painfully judicious in what she will and will not say in certain situations.

Your fencing friend will have a challenge in teaching the class, but the customer base is most definitely there. I bet his program is full within a couple weeks of announcing it. We're all used to paying thousands of dollars for therapy, so sports team fees are nothing by comparison, and we're desperate for social activities where our kids won't be totally mocked and singled out. A couple of different martial arts places around here have just realized that, and as each new program gets announced, the parents pounce on it.

Griff 04-11-2011 04:54 PM

It is very hard to hit the right note. If you over-sell a behavior issue to get an aide you're suddenly giving ammunition to the more restrictive environment types who haunt these meetings. The whole thing can be a tooth grinder.

Clodfobble 04-18-2011 06:06 PM

Why, oh why, can nothing ever be fucking easy?

The appointment with the GI doc went very well--he said Minifobette had some of the worst bloating even HE has ever seen, but nonetheless she is a "classic" case and Minifob is far more interesting from a clinical perspective--but regardless of the details, he can help them both. He made a point of confirming with me before we begin this process that what I want is for him to treat their digestive disease. Most kids show cognitive improvements alongside the digestive improvement, but some don't, and the only thing he promises is to correct the digestive disease. I said sure.

BUT THEN... I mentioned as part of their medical history that Mr. Clod's aunt has a rare genetic condition known as malignant hyperthermia. It's a muscular reaction to certain anesthetics, including an instant seizing of the heart. It is frequently fatal, but they brought his aunt back with the crash cart during whatever routine procedure she was having a couple of years ago. Anyway, we don't know if the kids actually have the gene for it, but after his aunt's event we were told to always mention that it's "in the family" anytime someone is having anesthesia.

We had of course mentioned it during Minifob's two previous procedures, and the anesthesiologist at that time just sort of took it in stride and never said anything more about it. I'm now being told that this was because he was at a major hospital--the best children's hospital in the state, supposedly--so they just took whatever precautions were necessary, no sweat. The kids' planned colonoscopy/endoscopy procedures are being done at an ambulatory surgery center, the staff of which is far less comfortable with the possible risk. Our doctor can't do our procedures at a full-scale hospital, because his schedule in Texas is literally to fly in Monday morning, spend all day in pre-op consults, all day Tuesday doing 8 kids' procedures back-to-back at the ambulatory center, all day Wednesday doing post-op followups, and fly out Wednesday night. We can't go to a different doctor because none of them will touch us.

So we have two options. One, fly both kids to New York and have their procedures done through his main office there, where he has more flexibility with scheduling and location. Or two, get Mr. Clod tested for malignant hyperthermia via a muscle biopsy. (Can't test the kids, because it's apparently only reliable past the age of 9 or so.) Assuming he tests negative (which is the statistical likelihood, despite it being a dominant gene,) then the ambulatory center will do the procedures on the kids. The problem with option two is that there are only 5 locations in the country that can even DO the muscle biopsy test, all in medical universities. And setting aside the cost of a plane ticket for him, and the fight to get the test covered by insurance, so far two of the five places have already said they couldn't do it for him any sooner than July.

We're continuing to look into our options. But seriously, God. I've done my time, I've worked plenty hard enough. It's someone else's turn now, yeah? (Actually, I'm thinking right about now is when I get cancer.)

monster 04-18-2011 06:31 PM

Quote:

Originally Posted by Clodfobble (Post 724047)
Why, oh why, can nothing ever be fucking easy?

Because you won't sit down and take no for an answer.

Fly the kids to New York, have a mini vacation first.

I'm sorry, although those words seem so useless in this situation

footfootfoot 04-18-2011 07:05 PM

Where in New York? like, the city? Skyscrapers and everything?

Clodfobble 04-19-2011 08:21 AM

A city called Far Rockaway, not sure where that is compared to the Empire State Building. :)

jimhelm 04-19-2011 09:38 AM

don't get cancer. win the lottery. [/goodvibes]

footfootfoot 04-19-2011 10:04 AM

Quote:

Originally Posted by Clodfobble (Post 724182)
A city called Far Rockaway, not sure where that is compared to the Empire State Building. :)

Far Rockaway? Seriously? That's more in the mid Atlantic than New York, but ok. It's practically at the end of the A train. Look to the lower right @~4:00 (Funny aside, the A train was where my late father wanted his ashes left so he could ride the subway forever. It's a very long train line)

http://www.mta.info/nyct/maps/submap.htm

http://www.mta.info/nyct/maps/sub_Mar11top.gif
http://www.mta.info/nyct/maps/sub_Mar11bottom.gif

footfootfoot 04-19-2011 10:06 AM

I guess it is a short hop from JFK though. But from the rest of the city it's aptly named.

Clodfobble 04-25-2011 11:50 PM

After a week-long maelstrom of countless phone calls, it's all been settled. Mr. Clod is going to Minnesota on May 9th to get a big chunk taken out of his leg at the University. It turns out it is a pretty big chunk indeed--several stitches and mild scarring are expected--but I honestly think he's kind of happy that he can be the one to do/endure for the kids, for once. Testing is done immediately, so we'll have confirmation that we can go ahead with the kids' procedures before he even gets back on the plane. We got ourselves approved for an "in-network exemption" through insurance, which means it's completely covered, and my mom is giving us air miles she was never going to use for us to fly him up there. It's worked out as well as it possibly could have, considering.

In other positive news, my mother-in-law gave my daughter something similar to this for her birthday. This is nice not because of the item itself, but because she got it "from a friend with an autistic child, and I guess he'd grown out of it." This is the first time she's acknowledged Minifobette's autism in any way, even indirectly. Giving a toy that is at least nominally "meant for" an autistic kid is a huge step for her.

squirell nutkin 04-25-2011 11:55 PM

very good news, big missing chunk aside.

xoxoxoBruce 04-26-2011 03:16 AM

Good to hear the extraneous bullshit is working out, you've got quite enough on your plate without that. Oh, and go granny. :D

glatt 04-26-2011 08:29 AM

That's awesome that you figured out the testing, and it's covered and the miles are free. Way to go!

monster 04-26-2011 11:21 AM

Quote:

Originally Posted by Clodfobble (Post 727212)
It turns out it is a pretty big chunk indeed--several stitches and mild scarring are expected.

Get the shark attack stories ready......

Clodfobble 05-08-2011 05:38 PM

9 more days. Come ooooooon May 17th...!

Part of the deal with this whole colonoscopy/endoscopy/pill cam procedure--wait, did I mention the pill cam? I didn't. It travels all the way through them, taking a photo every 30 seconds that is transmitted to a little box they wear on a belt until it passes. This enables the doctor to see damage in the small intestine, the vast majority of which is inaccessible by even the longest scopes. Irritatingly, despite the advanced technology of a freaking wireless digital camera the size of a pill, it does NOT in fact have any sort of "channel" function on it. The camera broadcasts indiscriminately, and the boxes pick it all up. So any two children who are having the same procedure done must stay at least 50 feet apart from each other for a minimum of 8 hours, lest their boxes pick up the other one's photos. So Minifobette will come home to chill after her scope, while Minifob will have to spend the rest of the day out playing minigolf and arcade games with daddy. So sad for him, I know.

ANYWAY, part of the deal with this whole procedure is that we don't want to miss anything that may be held partially under control by their considerable number of digestive medications. So we were told they absolutely must be off all of them for three weeks. No probiotics, no antimicrobials (sure, why not give Minifobette's infection the chance to become sentient,) and no digestive enzymes (Minifob didn't want to absorb any nutrients from his food anyway.) The girl has at least held steady at her usual "not on antibiotics" nastiness, though we've had to double up her normal dose of laxatives to keep it moving... but the boy is falling apart. On Friday I got an email from his teacher noting his downward spiral and asking what had changed for him. We have an agreement that I don't tell her when we're making changes to his medication, so she can act as an objective observer on his behaviors and skills. She said that he is spending most of the lunch period trying to lay across the bench, a movement he does to put pressure on his abdomen when it hurts. He's also verbally stimming almost nonstop (chanting the time on the clock every second as it ticks forward, fixating on chains of syllables in falsetto like "digga digga digga," clicking and ticking and making every noise you can imagine with his mouth...) I admit, for me this is worse than meltdowns, I have a really hard time with the constant aural onslaught. But as I told his teacher, all I can do is keep scaling back his food to more digestible stuff (I'll be down to nothing but applesauce and elemental formula boxes soon, after which I can't go any further,) and just keep him home from school if he becomes unmanageable. On the other hand, it's kind of good for his future Kindergarten teacher to get to see him like this, so she understands what I mean when I say he can't eat certain things.

Meanwhile, Mr. Clod just left for Minnesota. Turns out I was still underestimating the size of the operation: they'll be taking a 4-inch long piece of muscle out of his leg tomorrow morning. There's a sample video of it here for those of you who like watching medical procedures. It's fairly creepy.

Griff 05-08-2011 10:04 PM

Quote:

Originally Posted by Clodfobble (Post 732100)
they'll be taking a 4-inch long piece of muscle out of his leg tomorrow morning.

Yikes!

Clodfobble 05-08-2011 10:25 PM

Yeah. My mother-in-law actually decided to travel with him. He insisted it was a waste of her money but she would not be deterred, and I'm glad. She's afraid he's going to be completely disoriented/nauseous from the anesthesia and not be able to get back to the airport on his own. Me, I think he'll be completely cognizant... of how much pain he's in. They told him he'll be able to walk, but I expect it will be somewhat like he's had a c-section on his thigh, and the bottle of ibuprofen he packed ain't gonna cut it. (They'll give him a local anesthetic on the leg before discharging him, but I don't think they're giving him any sort of prescription for later, or if they do he won't be able to fill it until he gets back Monday night.)

monster 05-08-2011 10:44 PM

oh ug. thoughts are with Mr Fob

skysidhe 05-09-2011 02:52 AM

I hope they give him an RX and glad the mom went with. Best wishes!

ZenGum 05-09-2011 04:05 AM

I think Clod is going to be deeply conflicted about this.

Quote:

Trials hold promise of coeliac vaccine
Coeliac sufferers may not have to eliminate gluten from their diets after a successful trial of a potential vaccine.

Scientists at Melbourne's Walter and Eliza Hall Institute say they have tested the vaccine on 34 people.

If future trials are successful, the vaccine could be available by 2017.

Doctor Jason Tye-Din says it could treat around 90 per cent of coeliac patients.

"The gluten-free diet is very difficult, it's costly, it's complex and unfortunately even people who follow it very well, there's a large proportion who still don't get full healing of their bowel," he said.

"Alternatives to the gluten-free diet are really needed."

Dr Tye-Din says the aim of the vaccine is to desensitise people to the harmful effects of gluten, in the same way that allergy desensitisation therapies work.

Well, so long as the vaccine doesn't involve mercury...

DanaC 05-09-2011 07:47 AM

Quote:

Originally Posted by Clodfobble (Post 732100)
We have an agreement that I don't tell her when we're making changes to his medication, so she can act as an objective observer on his behaviors and skills.

Clever.

Hope all pans out fine and fast on this Clod. And get well soon Mr Clod.

Clodfobble 05-09-2011 01:54 PM

Quote:

Originally Posted by ZenGum
I think Clod is going to be deeply conflicted about this.

...

:rolleyes: Because if your vaccines are problematic, just redefine what a vaccine is, right? This is not a vaccine by any common understanding of the word. It is a frequent series of injections of tiny, almost imperceptible amounts of gluten, in an attempt to desensitize the immune system. It does not cause an immune response, does not generate antibodies, and does not confer any sort of "immunity" to a pathogen. It has more in common with homeopathy* than the traditional vaccination mechanism.

*Not something I subscribe to, mind you, but they are the ones who would tell you that a homeopathic tincture of imperceptible amounts of gluten taken over a long period of time is what you would need in order to get over your gluten-related disease.


In other news, Mr. Clod's test was negative as expected, he is awake and recovering fine, and he'll be on the plane home in another hour or so.

glatt 05-09-2011 01:58 PM

Quote:

Originally Posted by Clodfobble (Post 732272)
:he is awake and recovering fine, and he'll be on the plane home in another hour or so.

Good job, Mr. Clod.


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