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limey 09-14-2010 06:00 PM

Oh God.
My heart goes out to you. It really does.

Clodfobble 09-18-2010 03:10 PM

We're home from the hospital, and tonsil recovery is going well! We're still having to do some pain management with the hydrocodone prescription, which makes me very anxious and I can't wait to get off it. A supposedly 4-hour dose lasts in his body for about 10 hours, which is inherently concerning, but we are very careful not to give him more until we're sure the previous dose has worn off. Without it he's in agony, but with it he is scratching obsessively at his neck and feeling nauseous. But enough cognitive improvements have already begun to peek through that he's starting to accurately report where his pain level is (as opposed to the binary scale we're more used to, either playing happily or screaming on the floor about needing to eat Rice Chex,) so that's helpful.

The other new thing is he's noticing smells for the first time in his life. He keeps talking about this smell and that smell, and sniffing things curiously. The funniest example was the first night we were home: Mr. Clod keeps a stash of little candy bars in the cabinet that he can usually be found snacking on before dinner is ready. (To make up for all that healthy food I make him eat nowadays, you know.) Anyway, he had just eaten one, and a minute later wandered over to answer Minifob's call for someone to fix his transformer truck again. As soon as he got near, Minifob startled and said, "You ate... that cookie!" with wide eyes. Before he could respond Minifob decisively walked away, wanting nothing to do with him until the smell wore off. We're both very pleased that he was so offended/uncomfortable with Mr. Clod's food choice. :)

In other news, MTV has a show called "World of Jenks," and in each episode the host/filmmaker spends a week living with someone whose life is completely different from his own. During this episode he spends a week with a high-functioning but dependant 20-year-old with autism, and it's a nice, in-depth look at what this kid's real life is like, if you've got 22 minutes to spare. Touching but sad. We've sufficiently altered Minifob's trajectory at this point that we can be certain this will not be his future, but Minifobette's is still too short to know.

She may be on the verge of a big breakthrough though--she's suddenly started having semi-formed bowel movements for the first time in 4 months, which is fantastic. I was actually on the road when the first one happened, and Mr. Clod sent me a photo on my phone. Because of the recent tonsil chaos, we've not been able to be as meticulous about changing only one thing at a time for her, so we're not actually sure if the improvement is due to the recent removal of some potential allergens from her diet, the switch to a new type of digestive enzyme (which is also doing somewhat better for Minifob as well,) or the start of yet another antibiotic round. But we'll have a chance to figure it out soon, and meanwhile we've seen a huge jump in language, up to about 30-40 words. It could keep going up, or it could plateau again in a couple weeks, we have to wait and see.

xoxoxoBruce 09-18-2010 05:25 PM

It's nice to hear an upbeat post from you. :D

Sundae 09-19-2010 08:52 AM

Doors - aha!
Explains why a pupil in my previous class was obsessed by them.
G either had to be at the front of the queue to open them, or at the back to close them.
There were other symptoms of course.

As always, thanks for such personal insights into your life.
This week I read a mystery novel which featured an autistic child - purely because of you. The author's eldest child is autistic. It was a decent story as much as anything, as well as opening up the various symptoms and the way a mother feels about them. It wasn't amazing, but if you're interested it's Eye Contact by Cammie McGovern.

I doubt you have any spare time though!

Clodfobble 10-12-2010 12:58 AM

Today was a weird day.

It started off with a fantastic parent-teacher conference, in which the teacher confirmed what we've believed for awhile now, that Minifob will absolutely be ready to be mainstreamed by Kindergarten, most likely with minimal or no support. We haven't had him officially evaluated since the pediatric neurologist told us there was no need to come back late last year, but I'm feeling confident that we're going to lose the diagnosis entirely within another year or two. He has full conversations with me now, can relate stories about what happened to him at school that day, and will casually correct me when I get small details wrong. The teacher marveled at how far he's come in the last year and a half, "but he's one of my diet-vitamin kids, so it's not really that surprising." She's not legally allowed to tell me anything about any of the other kids, but of course I know the other biomedical moms in the class, and we all agreed to mention at these conferences that we'd like our kids to be mainstreamed together into the same classroom, so they'll start out with someone they know on the first day--and also so we can have our own little enclave of class party food trays, too. :)

But later in the morning, things went south as I spent no less than 45 minutes on the phone with the insurance company, arguing over a claim that we originally submitted back in July. By now, about half of their call center employees remember me when I call. This one had the decency to acknowledge that the error this go-round was clearly theirs, and made no sense whatsoever. The claim has returned to the mysterious people "in the back" for a second appeal, and I have updated my notes to reflect a new call back date in 21 days. So it goes.

Things continued sharply downhill after that, as Minifobette once again designated today to be a Day for Screaming. She's teething, and really coming into her own with regard to the autistic version of the Terrible Twos. I've actually been shocked at how many of Minifob's old traits have suddenly appeared in her, when up until now she's been the polar opposite of him in pretty much every way. She's turned violent and sleepless, and her language has taken a nosedive again too, but I'm really, really hoping that this is mostly due to the teething pain, and she'll come back around when it eases up. You know that numbing Orajel stuff you can put on babies' gums? It infuriated her. I put it on once and she completely freaked out at the sensation, shoving her hands in and trying to claw off some imaginary thing at the back of her teeth. I hadn't clipped her fingernails recently, so she actually made herself bleed doing this. Fan-fucking-tastic.

Then unexpectedly this evening, I got a FutureMe email that I wrote one year ago, inspired by this thread. It served to again highlight how far Minifob has come... and again how Minifobette has just inched along. We've been treating the two of them for almost the same amount of time, more than half her life in her case, and she doesn't have very much to show for it. I've gone back and looked at Minifob's initial school evaluation from April of 2009, and I'm certain that Minifobette is still going to rank lower when it's her turn in another month or two. Of course there's no way to know how bad off she would have been without treatment, and the general rule is that kids who have a severe regression (Minifobette) are significantly worse off than those who are weird from very early on (Minifob.) But I want two recovered kids, not just one. I guess with one in the bag, though, I'll have more time and resources to devote to the other, so there is that.

footfootfoot 10-12-2010 01:29 AM

Well, the only thing I can think of to say is that at least you don't suck at relationships.

xoxoxoBruce 10-12-2010 03:47 AM

Dat true, and also the ability to deal with insurance, medical, and educational professionals, with out going postal. No mean feat, that. :thumb:

classicman 10-12-2010 12:20 PM

Hang in there Clod ... You are doing a great job. There is so much to deal with, that many times it seems overwhelming, but you ARE doing it all.

Clodfobble 10-20-2010 10:45 AM

It's the little things that show you times are changing.

This morning I had to get back on the phone with the insurance company because they denied a random claim on the basis that one of my codes was no longer considered valid by the American Medical Association. Turns out it was the diagnosis code that they were suddenly taking issue with, which was especially strange as we file, oh, a half-dozen claims a month with this code. The code is (or was) 299.0, autistic disorder.

In the most recent code updates, the AMA saw fit to distinguish this into two new categories: 299.00, autistic disorder current or active state, and 299.01, autistic disorder residual state.

It's a fundamental acknowledgement that kids are recovering. Of course they don't say this to journalists, and they don't say it to ignorant pediatricians, and they don't say it to the parents who are still not seeking effective treatments for their kids. No, they only say it to the insurance companies, because of course they're going to want to know if they shouldn't have to pay for a procedure if the condition is residual...

Clodfobble 11-04-2010 12:08 AM

Time flies and drags at the same time. It was one year ago this month that we took away all of Minifob's food and put him on an elemental formula diet. During the three months he was on it, he gained 4 pounds, having not gained any weight at all for at least 6 months prior to that.

But since going off the formula, he has again not gained a single ounce, despite the fact that he eats 5 adult-sized meals a day. No weight gain in 8 months is something even mainstream pediatricians can believe in. So happy anniversary, he's going back on formula. Not exclusively; we're hoping to supplement his food with 3 drinks a day, which would be about half of his expected nutrient intake. The good news is we can switch to a less super-hypo-allergenic brand, since he'll be having real food alongside it anyway. This means that a.) it will taste better, and b.) it comes ready-made in liquid form in a brightly colored juice box thing, instead of a can of powder I have to spend all day scooping and mixing. With any luck insurance will still cover supplemental medical nutrition like they covered complete medical nutrition.

In other news, baking soda is my new best friend. Our gastroenterologist recommended it for suspected reflux, said it was both more effective and safer than prescription meds like Zantac. 1/2 teaspoon mixed in water twice a day, and Minifobette is sleeping much, much better at night. She eagerly drinks the stuff and asks for more. And at the same time, we've started to get a few 2-word phrases out of her. Hooray for less stomach pain!

xoxoxoBruce 11-04-2010 01:21 AM


we can switch to a less super-hypo-allergenic brand, since he'll be having real food alongside it anyway.
Isn't the reason he hasn't gained weight, that he's not getting the nutrition out of it? Or he's not getting most of the nutrition from it?

Clodfobble 11-04-2010 12:45 PM

Yes, it's because he isn't able to absorb most of what's passing through there (which is also why his body keeps telling him to eat, eat, eat. It's full but it's not nourished.) But taking away all food is psychologically and socially difficult, so we're okay with the idea of letting him continue to eat food while he's getting the formula nutrients as well, even if he's not getting much out of it.

The hypoallergenic nature of the formula is a separate concept from the nutritional side--having everything broken down is good for absorption, but it's also what you need if you're having allergic reactions to every food that passes through there. The allergies were our primary concern the first go-round, though the nutrient absorption was obviously a bonus. But since his food reactions have been holding steady (not great, but steady,) it's okay if he keeps eating food, and if the formula has, for example, sugar and grape flavoring added to it.

Clodfobble 11-22-2010 09:54 PM

Minifob has a conversation with Mr. Grasshopper.

I no longer have to explain to people in public that he's autistic. We are getting closer.

classicman 11-22-2010 10:19 PM

wow - thats awesome

footfootfoot 11-22-2010 11:17 PM

OK, Mr. inappropriate here. I know this is about Minifob's awesome recovery and that he is the star of the show, but I can't get over what a lovely voice you have, and I'm really a visual person, not an audial one. Still, I could listen to your voice all day. Unless you were saying stuff like, "Would you take this to the compost?" or "Did you email so and so about the Dingus?" "Have you seen the checkbook?"

That would probably get old. Even with your voice.

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