Allen Frances: DSM 5 Freezes Out Its Stakeholders

Allen Frances: DSM 5 Freezes Out Its Stakeholders.

Is anyone really surprised?

Watch this.

Such a beautiful video from a father.

I don’t know his feelings on biomed. I don’t really care, either. He’s a parent of a child with autism; we’re in the same club.

I feel like his blog is important because there aren’t a lot of places for fathers to go. Men handle this differently with very little support or outlets. If you’re a father looking for a little help outside, maybe this is a good place to start. You could certainly do worse.

All the tests that folks talk about

This was from a conversation on a list.

Great answer Cheryl. Do you have a blog entry on this? Would be a nice addition if not.

(redacted)

On daily basis, there are many tests are talked about on this mailing list and since I am a beginner with all biomed, everything sounds to me like alien. I find all this information super overwhelming and takes time to digest everything.

So here goes my questions –
– All the tests that anyone talks about, are they all suggested and ordered but you (DAN!) doctor?

Any MD/DO can order any of the labs. Some you can order yourself.

– Do you need special lab to do these tests or regular labs do these tests?

I rarely use a specialty lab. Great Plains and Doctors Data take insurance, though. I think of the specialty labs, the most important one is the CSA and OAT. Not all of the information is reliable but it’s defnitely helpful.

– How often these tests are covered by the insurance? (of course, it depends on the insurance but if you have a ‘good’ insurance, like we have Oxford)

The only test that I’ve found not to be covered is food allergy testing. IgG testing just isn’t mainstream enough. But only if the lab you see takes your insurance. I do believe you can self submit to your insurance if the lab doesn’t take it but it will be at a lower rate.

Other labs, like the non-specialty labs are usually all covered by your plan but definitely still depends on how good your coverage is.

– Is there any comprehensive list of tests somewhere up on the net those can be performed for testing and treating our kids with the explanation i.e. what this test is for and what the result means? So that I can read up on that before I approach any doctor.

Oi. That’s a lot of possible tests. But the ones to start with would be a **CSA (comp. stool analysis) and **OAT (organic acid test). **Food allergy (or you could do a food journal instead… but if you don’t, Alletess has one for $89 that you can have your doc sign off on if willing.) –these 3 are not, imo, something you need to do often. But a good place to start for a newbie to get some baselines.

viral titers: HHV1-6, any vaccine titers you want,

AntiDnase and ASO titers (PANDAS),

Ig and all subclasses,

CBC + CMP,

T&B lymph/NK cells,

homocysteine

Things to consider at some point:

**Urine Amino Acid (specialty lab – I don’t think it’s that important but if you have proten issues, could be better than nothing.)

thyroid

cortisol

other hormones (pregnenelone, progesterone, testosterone, IGF-1)

Vitamin D (bet you money you’re low! 😉 )

other vitamins and minerals (ferritin, zinc, copper, etc)

**hair metals test through GPL/DDI(or Labbio urinary porphyrins if you prefer to consider IV chelation – we do AC so hair test only – and not expensive if not covered by insurance)

**Yasko genetics test ($500/one time deal specialty lab not covered by insurance and nothing comparable in regular labs but I do believe you can get *some* of the genes through a regular lab. I think Toni might be able to tell you which ones. These are all metabolic genes.)

Toxoplasmosis

Mycoplasma

Lyme – you can get the Western Blot through a local lab but it’s not as sensitive as a specialty lab (**Igenex) which is not covered by insurance. What makes this specialty lab special is that it actually gives you parasite information for all of them and more band information. Western blot I believe only test for borrelia and the other major one that I can’t think of right now. The lyme parents can give better info on it than I can. It’s expensive, I think it’s $1800.

I marked all the specialty lab tests with a ** and really, they aren’t that many and not stuff you need to do all at once or too soon. You could easily break them up if you choose to do them.

As for how to read them…that’s steak, not popcorn*. The specialty labs will have explanations and nice little KISS charts that tell you exactly what’s going on with an explanation attached. They aren’t fully explained well but it’s a start.

The regular labs, well…it’s hard to tell a mainstream doctor that most people are low in vitamin D to even get one to test it (which I find funny that they say most people are *not* low in it but will never test anyone to know that!) And GPs tend to not understand half of the labs that cross them anyway. Any mainstream endocrinologist will tell you that the lab reference ranges for thyroid are too wide and where most GPs tell you it’s fine because it’s in range, an endocrinologist will tell you that you need thyroid. Soooo, how to read them is a loaded question. High viral titers a mainstream doctor will tell you that it just means you’ve been exposed. They don’t take anything else into consideration. It’s an impossible question to answer, unfortunately.

*For an explanation, click here. I shamelessly stole it from Patrick Rothfuss. He rocks. Buy his books, they also rock.

Should we even try to recover our kids?

I know, I promised a post on recovery and what it means but I got sidetracked and offer you this instead, which is sorta-kinda the same thing. But not. I still plan to post one on recovery, though. Pinky promise.

In response to Jim C. Hines’ review of The Speed of Dark, I’m posting this here because what I have to say really isn’t appropriate for his blog comments. I also thought that maybe some of my readers have read the book and might have something to add and would want to go to his blog to comment. I haven’t actually read the book so this is really in response to the question he poses:should we “cure” those with autism? There was a little more to it, and I’m not even going to touch the high vs. low functioning topic today, but that’s the basic question.

As someone that has a son that is mostly recovered from autism, it’s not something that I can understand as being something that changes one’s life to the degree that this kind of moral question asks. The book may be showing a “cure” in a different angle than real life, but in reality, there is already help. Not enough help, but some.

In real life, recovery is not a cure because autism is not a mental disorder that needs curing (something the NDers and biomed parents can all agree upon, but that’s as far as the agreement goes). It’s a bunch of biological inconsistencies and malfunctions that end up creating neurological symptoms. In some people, these symptoms can’t be corrected because the underlying condition can’t be corrected or found. I would venture to add that it’s not for lack of trying. Each child is unique in their issues. There are no two children with autism that present exactly the same way. But with thousands of kids recovering from autism every year, it’s hard to imagine that western medicine is right. A lot of people can be helped, and without the use of antipsychotics or antidepressants.

The real question is: what’s really going on with our kids? Why does the diet work for some and not for others? Why is it that treatments for other chronic illnesses, like CFS or Lyme or any of the other many things biomed parents and practitioners generally discuss, work on our kids, too? Has anyone ever noticed that even some people with depression seem to recover through biomed? Why has no one in traditional western medicine noticed the pattern? Or maybe they have and just refuse to acknowledge or explore it? Okay, so that’s way more than one question. You get my drift.

Not all kids can be treated the same. What works for one doesn’t necessarily work for another. It boils down to this: different biological issues for different children (and adults). But they all produce neurological symptoms.

Is it fair to expect that a child that has nothing but diarrhea doesn’t have something wrong with his/her bowels? They call it “normal” in autism instead of asking why. Prevacid is what you get. This is only one of may examples of what plagues these children. Sensitivity to sound. Why is it that when you treat a child for PANDAS, this sensitivity goes away? The OCD goes away? Why is it that when another child is treated for lyme, that child becomes completely and totally recovered?

Because there are really still very few cases of autism. It’s still as rare as it’s ever been, if it’s ever been at all.

Recovery doesn’t change who a person is. It gives them the chance to live life the way they want. Being able to not live life with an aching stomach doesn’t change the core of a person. It just means their stomach doesn’t hurt. Which in the case of developing children, many times means they can sleep better, eat better and focus better. Which amazingly enough, means they function better. Whoda thunk?

So is the question really about changing the core of a person with autism or is it about healing the medical problems they have? A person who thinks in pictures is still going to think in pictures. Having a healthy body isn’t going to change that. A savant isn’t going to suddenly stop being a savant because their vitamin deficiency was treated and they stopped scripting Thomas the Tank Engine.

My son went from moderate/severe autism to pretty much typical (I always say “pretty much” or “mostly” because he still has raging ADD – we’re working on it) and not once did it change him as a person – except when I gave him antidepressants but that’s another post. He is still the same lovable, caring and funny little boy he always has been. He’s thrived and become so much more. And he’s able to tell me exactly how what few issues he has left bothers him and makes him hate himself and frustrates him. I’m not going to lay down and allow him to grow up hating himself and then deciding he has to accept that this is him and he doesn’t need to change, all the while silently hating every minute of his life – nor will I let someone else convince him of that.

No matter what, he’ll be happy with who he is and I’ll encourage him and love him and teach him to love himself, but that doesn’t mean I won’t strive to help him become who he wants to become.

There’s a reason why autistic adults have a high suicide rate. If it’s hard for neurotypical people to watch and be around, if it’s hard for a mother to watch her son struggle, it’s 100 times harder to be the autistic person. Everyone wants to be happy and comfortable with who they are, including those with ASD.

Now, this whole argument is probably geared more toward the management of symptoms with antipsychotics, antidepressants and the like and I’ve kind of hijacked it for biomed. But that’s what happens when the argument is so vague. Could mean traditional medicine, could mean biomed. I dunno. And maybe those drugs do change a person. Like I said earlier, when I gave my son antidepressants, they definitely changed him. He was, quite literally, psychotic. At best, they are only meant to manage symptoms, and they do a very poor job of it. Still, some people do very well on them. I can’t argue with that.

But the recovery I’m talking about, the recovery us “crazy moms” are talking about, doesn’t change a person. It doesn’t change the way a person thinks or views life.

Wait. I’m wrong. It does change people. It makes them feel normal. Or maybe a better way to say it is not that they feel normal, for what is normal anyway, but that they no longer feel abnormal. It takes away the pain they aren’t supposed to have. Being in pain (physically or emotionally) doesn’t make a person special or unique. It just makes them in pain. To go through life needing to bang your head against a wall long after the bleeding started, is that really something you want to keep?

Packing up and moving

I’ve decided to take the plunge and move my blog to WordPress. Eventually I will be setting up an actual website with my very own domain name that will house my blog and WordPress is just better for that. And I still get complaints of how blogger is working out. Or rather, not working out, for readers.

What does this mean for you, dear reader? Not much. You can continue to stay right where you are if you are happy with your subscription just the way it is. I will continue to mirror the feed on Blogger because I’m just sweet like that. I don’t want to disrupt anyone’s happy feeling and it isn’t any skin off my back to continue mirroring here. But you may have to deal with seeing shortcodes at the beginning of every post. In order to mirror, I have to email all my posts. I haven’t managed to figure out any other way to do it after extensive googling. (I wonder if I can put them at the end? I’ll have to try a test of that.)

But for those that are unhappy with Blogger or are irritated by the way the page doesn’t seem to load correctly for so many of you, there is an alternative. You can now also find Gryffin’s Tail here. I can’t make it as feature rich because I’m not self-hosting it yet but maybe someday.

This is actually my first test run on seeing how well emailing all my posts work out. Wish me luck! If all goes well, I shall continue on to focusing on plain old blogging and will get the recovery post up as soon as I can.

Summer reflections

As the summer break comes to an end, I find myself reflecting on how it went.

It’s definitely been enlightening. My mostly recovered son didn’t behave so mostly recovered while I was on vacation. As a matter of fact, he definitely had me worried for a second that I had accepted recovery as a fact a bit too soon.

Then I remembered.

Oh yeah.

I tried to stop the Valtrex again. Epic fail.

If anyone has ever had any doubt that autism is a poorly functioning biological system, all they’d have to do is take my son for a week or two and stop giving him antivirals. The difference is that big. Even in recovery he still has major ADHD issues. Having to deal with both the ADHD and autism can just be exhausting.

Got back on it and he’s mostly back to normal. It will probably take until school starts to get him back to where he was.

Which brings me to another thought. My sil said something to me while I was visiting that made me realize I probably need to do a post on recovery and what it means. We were discussing water and how good Gryffin was around it and in it. And that moved on to how many children with autism drown because they have no concept of danger or drowning, or some don’t feel pain or whatever it is that leads a child with autism to jump into water and drown. I told her water was still a concern for me even though I knew he was safe around water. Old habits.

She couldn’t understand why I’d still be worried. She said, “But I thought you said he was recovered?”

And that’s when I realized that recovery is very misunderstood. My sil is no fool. She’s one smart cookie. She owns and runs a learning lab where she teaches struggling kids how to process information better and she’s had ASD students. So this wasn’t something I would’ve thought she would misunderstand. What I failed to realize is: why wouldn’t she? She doesn’t live with it everyday. She doesn’t treat it. She doesn’t research it and it doesn’t engulf her life. She may not have even heard of recovery until the moment I first told her Gryffin was mostly recovered (yes, I always say “mostly recovered”). My expectation that people (anyone, not just my sil) know what I mean when I say recovered is completely unrealistic and unfair on my part.

A child recovered from autism is not necessarily issue free. Like a child with asthma, they live a mostly normal life if they have an inhaler.

So I really need to write a post on what recovery means. All the different forms and variations and how it’s perceived. I’m going to post that sometime in the next week.

School is closing in on us and I feel like I haven’t really had a summer. My NT son had his tonsils/adenoids removed right when we got back from vacation and that kept us homebound for a while. I wanted to do some more chelating this summer and never got around to it. Especially since I had to get Gryffin back on track with his antiviral. This summer seems to have just completely gotten away from me.

Pfffft.

At least we had some fun, though. We spent time visiting with our families and friends, something we just don’t get to do enough.

Autism doesn’t exist

I had a question from a friend with no spawn of his own today.  That question was: what do you mean your child is recovered?  I thought it was lifelong?

Well, not really.  Some do.  But hopefully this can help people understand what it means to have autism. It’s a great way to get a good overview of why biomedical interventions exist and why/how they help.

Another new look

You might have noticed the new clothes.  I know, it seems like I just got new clothes and yet here we are, changed again.

I really don’t plan to change it up often and I’m sorry if it has been jolting.  You see, this time I had to do it.  Blogger has updated their interface and the old template, which I very much liked, wasn’t working with the new blogger.  I’m saddened by it but I must move on if I want my blog to be readable.  That whole “everything in Georgia italics” thing was a bit hard on the eyes.

Anyway, hope you like the new look!

I’m sorry. Excuse me. Pardon me. My apologies.

I know some people believe that forced apologies are insincere. I’ve heard it over and over again and while I understand the fundamentals of the belief, it doesn’t change the fact that we should apologize when our children can’t.

Some of you are probably wondering what I’ve been smoking to say something like that.  The truth is, if parents didn’t care about what others thought of their child, they wouldn’t have behavioral therapy. They wouldn’t care about social skills and focus on life skills, educational skills, and vocational skills. But that’s not true for most. We want our kids to have friends in school. We want them to make friends as adults. We want them to have girlfriends and boyfriends, husbands and wives. We want them to have children. We don’t want them to be social pariahs.

Honestly, how many apologies do people make that are sincere? Not many. Every person we bump into with a rushed, “excuse me” or “I’m sorry” isn’t steeped in genuine remorse and guilt. And rarely are people as emphatically remorseful as they sometimes make it sound.

Yes, there are some things we do that keep us up at night because we feel so badly about them.  But not many. Most things are forgotten about within five minutes.

Does that mean we shouldn’t apologize? No.

Apologies are a social construct. It’s a display of politeness. It’s a social skill. We can’t teach our children social skills by excluding the apology unless they mean it, especially when they are likely to be even  less remorseful than a typical child because logically, why should they apologize for something they didn’t know?  They should do it for the same reason you get a ticket for speeding in a residential area when there is no posted speed limit. Not knowing doesn’t excuse the behavior.  Everyone knows it’s twenty-five mph in a residential area, posted or not.

It’s not about whether or not they have autism. Austism might be why  they don’t understand that biting is inappropriate, but that still doesn’t excuse the behavior. The majority are able to learn. Having a consequence for biting is something I’m sure most parents have, but they don’t always make their kids apologize or apologize for them. This is a mistake. If the child were typical, the likelihood of a forced apology is much greater. Don’t let autism be an excuse.  It’s not. The whole point of behavioral therapy is to teach them what is acceptable behavior and what isn’t.

Apologies aren’t meant to always be sincere.  Remember – it’s a social construct. It’s about being polite. Acknowledging that something occurred. Having a consequence to hitting a child isn’t the same as having a consequence and making the hitter acknowledge that hitting is wrong.  Apologizing makes a person internalize what happened as being offensive as opposed to just suffering through a time-out because mom’s pissed. This occurs even on a subconscious level. This is how we learn expected behavior.

One could say that apologizing is only meant to shame the offender and well, yes.  That’s true. Get ready for the obvious…because it’s meant to teach social skills and right from wrong. But a person can only feel as much shame as they allow.  Through good and bad acts, rewards, punishments and apologies and praise, we learn to put that “price tag” on our acts.

How much shame does one feel when they apologize for bumping into someone? None. How much shame does a person feel when they steal someone’s husband? Probably a whole lot. Because doing bad things in the past have taught us the degrees to which we should feel shame and apologies are a part of that.

I’m sorry (see, another insincere apology but socially it’s expected because I’m expressing an alternate view than others and hopefully doing so in an inoffensive way – that’s always debatable with me but I digress), but apologies are a part of life. They are a part of learning appropriate social behavior. If typical behavior is what a parent wants their child to learn, teach that child to apologize because more people expect it than don’t. By not teaching them to apologize whether they mean it or not, parents are setting their kids up to be ridiculed and hated for being a rude and pompous ass by their peers in the future. I don’t think that’s what parents want for their kids.

Whether or not a personal belief is to like or dislike the insincere apology, until insincere apologies are passe in society as a whole, give your child all the tools they need to succeed in the society as it is today. They are already starting behind the eight ball, why make it harder?

Some personal thoughts on ADHD and stimulant meds

I’ve been doing things all these years to try to alleviate the ADHD with little success. Things are only marginally better with biomed. I haven’t tried everything – I’m calling my doc to see if we can try hydergine (he’s already on 2 other non-Rx nootropics but I’ve read that hydergine in combo with other nootropics is like night and day). I’ve been doing biomed for over 4 years and haven’t made any headway with it so I’ve decided that if I can’t take care of it without stimulants then I will try them when he gets to the grade where grades matter which is, I think the 4th grade. I have a couple years still to work on it.

In many ways, I feel like autism masked his ADHD.  As he recovered from autism, his ADHD just got worse. Like we had been able to blame the autism for so much until the autism wasn’t there to blame anymore.

I admit to sometimes wondering if I’m just doing him a disservice by continuing to wait. If you know anything about ADHD, language issues are quite common and his pragmatics just aren’t great – something I used to attribute to autism until I learned how prevalent it is in ADHD and realized that is the last of his autism I needed to get out that is just a toughy. Getting him to speak was easy.  Getting him to speak and comprehend at least somewhat close to typical, totally different…  I often wonder if these would solve his problem and he wouldn’t have to play catch up so hard.

Speaking to others with ADHD and having them tell me that the first time they started their ADHD med they finally felt normal really makes an impact. Hearing them tell me how the world finally righted itself and everything made sense because of their meds does give me great pause.

I dunno what the answer is. Part of me is just too chicken to even give the meds after doing biomed for so long. I don’t want to put something like stimulants into him not knowing what the long term effects are.  Another part of me feels like I’d just be a huge hypocrite if I gave them, I used to be one of those people that thought stimulants were a crutch of bad parenting. If I just find the right biomed combination, the right key, find the root of what’s happening…  And then another part of me feels like I could be giving him something right now that could potentially make it all go away and I’m not; and wondering just how bad of a mom that makes me.

It’s a daily struggle to know what the right thing is. I do feel like he’s just too young to be taking stimulants and that’s my main driving force behind doing everything I can before going to meds.  I don’t have a lot of confidence that I can avoid that, though.  From my answers on the Connors test, wow.  He’s got it bad.

Previous Older Entries

Pages