Withdrawals and other fun stuff that go with GFCF

GFCF is not cheap in anyway and there is not much variety. I’ve been excited to come across new foods that say gluten free, but alas they usually contain casein. I was going out of my mind trying to figure it all out. My son was such a picky eater and I mean picky. He had maybe 3 foods he would eat at the point that we started and I worried so much that he would just refuse everything and start to starve. But I knew what these foods were doing to him and I couldn’t let that go on anymore. I had to go back to basics. Fruits, veges, meats and snacks from scratch. Not easy and it takes so much patience to work through trying all these foods to find ones that your child will eat. It’s slow going and you will constantly be worrying if they are getting enough, if they will constantly refuse to eat anything but ‘restricted foods’.

It will get better and it does get easier. The worst and –I say this with all the love in the world- most annoying part of it all is the withdrawal. They may get angrier, stim more, cry more, self injury more and when you get down to the nitty gritty, they will hunt out ‘restricted foods’ like a crackhead looking for a fix. I am not kidding. My kid hounds me when I eat bread and goes for playdoh or any not so edible thing that has gluten or casein in it. I’ve heard of kids licking the newly polished floors because they can literally smell the gluten in the wax. I’ve heard so many stories of children eating things, you would not imagine had gluten or casein in it. You have to be on constant watch; daycare, school and just being at someone else’s house could inadvertently cause an ‘infraction’.

A really good tip if you are on your way. Approximately 6hrs after an infraction you will start to notice signs. This has helped me countless times when trying to figure out what food he was ‘reacting’ to, when I started to see him ‘react’ I counted back about 6hrs and would find out what he ate. I removed the food and no more ‘reactions’.

Now on to the good stuff. If everything goes accordingly –the diet works for your child, you have made sure to remove all ‘restricted foods’ –you may not see the same improvements if you are doing a slow diet- you will start to notice some or all of the following: Less/no – headbanging, self injurious behaviour and hitting, pinching, biting of others. Less – meltdowns, headaches, stimming, stomach pains and waking up in the middle of the night screaming/crying. More – eye contact, focus, speech, awareness, interaction and imaginative play.

Now remember, you could see results right away or they could take a few months. Gluten and Casein are in many, many things so it’s good to recheck what your child is eating when you are implementing this ‘diet’. Also Remember that it’s not just about gluten free, casein has the exact same effect. Good Luck.

GF/CF Getting Started

I’m sure at some point you’ve heard something about the ‘autism diet’, touted sometimes in such extremes as the miracle cure or a load of crap. As usual, somewhere in the middle is the truth. We can get right down to the science of it later but for right now let’s talk a little more personal.

Now first off, there are a few things that need to be made clear.

This may not be right for your child

You don’t have to go all hardcore about it to start

You can do tests to decide beforehand whether to start

Things will get worse before they get better

So first thing, you need to determine is whether this is right for your child. Take a week and really watch your child, there are a few things you should be watching for. WARNING: this can get a little gross.

Does your child have many, very few, or regular bowel movements?

Does your child rarely have a solid poop?

Does your child’s poop have a very rancid odor, is it very often runny, is it ‘acidy’ – burns the skin on their bottoms?

Does your child’s urine have a very strong smell?

Is your child underweight and/or have a bloated belly? (an example would be, like the children shown on those feed the children infomercials)

Does your child have a limited number of foods they will eat?

Does your child eat an abundance – a lot of or only – these foods; Pasta, milk, cheese, breads, cereal – basically any obvious milk/bread foods – an example would be a child that drinks say 10+ glasses of milk per day and only wants to eat pasta and cheese

If this is your child it would be worth it to give the diet a try. You can work at it slow or go cold turkey, but please remember that your child WILL go through withdrawals. I believe the bigger the cut out, the worse the withdrawal can be. So it could look like doing this is making it worse but please give it some time, this is a good sign. You can start out small and just remove drinking milk and then move on to removing bread and pasta. We did a trial run to know for sure after seeing all the symptoms for our son. After a week of just taking drinking milk out of his diet, he started to look us in the eye again. Not everyone will be this way but the more you take out the more results you will see and seeing is believing.

Warrior Mothers

Warrior Mothers

Everyday a constant battle at home, outside and online. Why? The children.

Everyday at home is like being in war. The day starts early with planning and preparation, each stage of the day checked over and all variables thought of and plan B’s, C’s and D’s ready to be implemented. Then it’s to the battlefield. Clothes carefully picked and put on according to the pre-planned stages, each step requiring constant encouragement and approval. Each morning task takes at least twice as long if not longer than the average cadet. Anything that requires an outside object, like a brush or toothpaste takes months sometimes years before that step becomes merely a civil dispute. Meals are not left out of the battles and on many occasions require more attention than anything else. Every ingredient must be checked, every new food monitored for reactions and every sensory issue, hyperactivity and just plain refusal dealt with using the book of game plans. This book, located in the brains of each warrior mother, holds all plans that have worked, failed and not yet attempted when dealing with a battle. Throughout the day warriors must face stares, comments and just plain old oppression from outsiders. Each night holds hope of rest and some days that hope comes true and other days seem endless. Online they fight for a better life for their children, for truth, justice and all that and it is a very long and extremely tiring war, that will, most likely last the majority of their life.

They don’t stop fighting, they don’t stop caring and I hope they never do because they are making change. You can call them crazy, selfish, ‘not accepting’, loud and angry. You can try every tactic you have to stop them, throw every bullshit study you can come up with to try and convince them that what they believe is wrong. But one thing you have to remember; They are mothers fighting for their children, mothers that paid attention, that saw what happened to their kids and are pissed off and tired of being told; that nothing can be done, that there is no way possible that what they saw happened and that they should accept their child for what they are now and just enjoy time with them.

They are using every bit of energy that they have, to find help for their kids. I commend them on their unending efforts to bring about change and not only help their own little ones but as many others as they possibly can. They have been working for years and instead of being called crazy, I think we should be thanking them because if not for them, then we would never hear ‘autism is treatable’, that ‘recovery is possible’ or that ‘you have a choice’. These mothers have helped so many children when everyone else had turned their backs on them. Even with all the hate that they receive, they still are out there every day, helping others, finding ways to help their children and waking up ready to do battle.

Thank you warrior mothers

You inspire us all to never stop fighting

To never give up

And that our children will not be left forgotten

The Autism Community

The preponderance of the ‘autism community’ exists online. Yes in each town there is usually real life support available to some degree but it is very small in comparison to the amount of those affected – individuals, families, those who work with people on the spectrum- that are online. Facebook groups, websites and blogs are dedicated to all things autism. It has helped and connected many that have otherwise felt alone in this battle.

Before it’s even commented on, yes it is a battle. Everyday parents have to meet challenges that others do not, they need to think 5 steps ahead, plan every move, combat every meltdown, constantly watching, constantly on edge and usually with little to no breaks. They need support, they need to listen to those who have been down their road before and they need to know that they are not alone.

The consensus is that most of this is met online. Talking to other parents, individuals and those in the field of ASD’s has helped them more, than what they have available to them where they live.

Aside from that, there is a lot of discussion concerning what causes autism, what is actually happening to those on the autism spectrum, changes in diagnostics, what other symptoms not listed are being experience by more and more and what we are missing. In some groups these topics are deemed untouchable or not worth discussing because it is believed to have already been answered. There are open minded individuals who will look into all sides and those that are sure they already know the answer and refuse to even look at what the other side is saying and may therefore be missing things that are vital.

The most heated topics are touched on at some point by everyone, usually with snarky remarks or very high emphasis on what they believe to be true. Everyday a new study, paper or article comes forth to fan the flames higher, in what is becoming a furious battle between what would appear to be 2 sides.  Although there are many differing groups within the community we’ll just discuss 2 for right now.

On one side are those who believe that vaccines are causing some, perhaps all autism and are pursuing treatments to help those on the spectrum, that also experience physical issues that appear to be directly related to their autism.

On another side are those who believe that autism is due to genetics and/or passed down through the family, that there is no increase and that it is untrue that those on the autism spectrum have other symptoms in relation to autism because autism is strictly neurological and those issues are something else entirely.

While one side claims that these issues need to be looked at, the other says it has been looked at over and over again. So who is right and who is wrong or is it all just a matter of opinion?

I honestly try not to be one sided about things, especially concerning autism, but it is very hard to do so when people are continuously putting up the shields when it comes to certain topics.

Now obviously things have not been looked into if people are still debating about it this much. This day unfortunately won’t bring any answers but instead show some insight into this constant battle amongst ourselves.

The following is from a blog about autism, it is a piece that at first looks to be regarding a new study that just came out . Once again though if you read through you can see how the actual study is barely touched on. It seems to be more of a lash out of one page. I think the set off for this individual was the word debunked. This word is one of the many that gets thrown around all too much online. I am certainly not condoning the page using this term, as I know that one study is not going to change everything and I don’t even wish to discuss the study at this point – haven’t read through it all yet- What I am going to talk about is the obvious lashing out and one sidedness that is occurring more and more.

“Based on this study, of course, many autism groups are announcing that the idea of “autism as a genetic disorder” has been debunked.  Now, they say, we KNOW that it’s all in the environment.  What’s more, they say, we’re finally overturning the holy grail of genetics – the belief that all autism is inherited.”

Well obviously I don’t know where the author has been, but many autism groups are not just now saying this, in fact they’ve been for some time. The author makes it seem like this one study has changed the minds of many, which I think is very inaccurate. People have been claiming that it is not hereditary and that something environmental is in fact to blame, for a very long time – yes even before Wakefield-.

The author continues to talk about an interview with someone who is leaning towards an environmental cause making such comments as “I don’t believe any of this holds much water.” “Earlier  studies, of which there have been quite a few, seem to suggest that autism is an extremely heritable disorder.”-I haven’t looked at the single study the author provided yet either, but at this point I wonder if vaccines or other exposures were looked at.

“…so far as I know, there is no general agreement on the percentage of “real” as opposed to “apparent” rise in autism spectrum disorders.” – obviously the author hasn’t been looking very hard because even last year there were several publishing’s stating that ‘diagnostic changes and better diagnosing can only account for a small percentage in increase and that an environmental cause is most likely.’

“I will be fascinated to see whether the world will hail a sudden decline in autism spectrum incidence as of May, 2013.” – I would be interested, if there is any decrease at all. Most likely though if things stay on the current path, the number will either flat line or continue increasing as usual.

Down to the comment section. . .

“What I don’t understand about the whole “autism is an environmental epidemic” argument is – let’s say that everything in our manmade environment, from cell phones to plastics to coal pollution is causing neurological damage that looks like autism. In addition, let’s suggest that poor maternal nutrition, too little vitamin D for kids, etc. are all culprits.” – the author

Again for an ‘autism expert’ this person is really falling behind on all things autism. No one is stating that all these things could cause autism. In fact the most highly discussed causes are; ingredients found both in vaccines and the environment- with an emphasis on metals – overstimulation of the immune system and/or too many vaccines in one day/schedule and medications and medical procedures during and post pregnancy. Obviously the author is trying to diminish the claims made of an environmental factor for autism, by trying to make it seem like people are blaming everything and that by doing so is foolish. If you listen and keep up you know that there are specifics being questioned and it is not just people trying to find blame for autism.

A good response to this was “If primarily caused by environmental toxins such as air pollution and water pollution, why has the rate of autism increased so much over the past 25 years? Why was the rate so much lower in the 60’s even though some areas had worse pollution than now? This is one reason why many believe that vaccines are really the primary factor. The number of vaccines has increased dramatically during the same time period during which autism has increased.” “ …… if autism were strictly genetic, why are there so many children with autism these days who are the first full blown case of autism in the family? Yeah, maybe Mom or Dad or a grandparents, uncle, or aunt may have a bit of aspie characteristics, but not full blown autism, not nonverbal or stimming etc.”

A comment about the rise in autism in line with the rise in vaccines spurred this response from the author

“But that reality, combined with an increased vaccine schedule, is not really a helpful way to determine whether, to what degree, and why there may be an autism epidemic.” – actually, looking at correlations – increased vaccines, increased autism- would be very helpful. Completely dismissing the claim without further investigation is not helpful to anyone.

Then the author goes on again to try and dismiss vaccines as a viable cause by trying to make it sound like anything could be to blame and that by looking into it is foolish   “Maybe the issue was prenatal exposure to pesticides. Or multiple ultrasounds. Or pitocin. Or anti-depressants. Or maybe dad’s sperm was older and had mutated DNA. Or maybe mom’s use of cell phones was the issue. Or someone ate too much tuna fish. Or not enough folic acid. Or too little vitamin D. Or too many foods with chemical additives. Or contrails. Or rain. Or cable TV. Or pet shampoo. Or plastics. Or microwaved containers.”

Another good comment “I don’t think anyone is denying a strong genetic susceptibility, but as the epidemic moves along, it’s picking up more and more victims, which suggests the genetic influence may well be “just being human” one day. Certainly we don’t see the yards and fields along our same polluted highways littered with spinning cows, or rocking dogs!”

Is met with this response from the author. . . please note that these are not necessarily true, but are just the beliefs of the author. “Here are some of the things that HAVE been suggested:

1. we’re not in the middle of an epidemic at all; rather we have moved the goal posts in the middle of the game, resulting in a significant change in “scoring” for autism.
2. we’re seeing a rise in autism due to a combination of genetic and environmental factors
3. we’re beginning to better understand how inborn differences in brain structure and function impact behavior and communication
4. we’re better understanding how genetic mutation can impact issues like behavior and communication
5. autism is highly heritable
6. we’re zeroing in on some specific causes of autism, along with associations with things like parental age, specific drugs, etc.”

Not touching on all of these points but I must note that the studies showing that parental age is a factor is simply . . . a load of crap. . .

And on and on the debate rages, each side not budging and no one getting anywhere. With people constantly dismissing vaccines as a factor, studies that should have been done by now are looking like they never will be.

Listening to parents everywhere

So we’ve already established that there isn’t anything refuting the ‘autism vaccine link’. So what now? Let’s start at the beginning, not historically speaking, rather who are making these claims and why are we hearing so much about it now?

Of course individuals are claiming vaccine injury, but the majority –and loudest- of voices are coming from parents, mainly those of children somewhere along the spectrum. Yes since vaccines have been around, claims of injuries caused by them have been made and parents have been speaking out the entire time, so why are we constantly hearing about it nowadays?

I can’t lay it all down to one specific reason but can tell you this, there is an ever growing number of these parents and they are; vocal, active, unrelenting and downright pissed off. These parents have watched their seemingly healthy, ‘typically developing’ child change immediately/shortly after receiving a ‘round’ of vaccines. They have brought their concerns to everyone under the sun and have been; reassured that everything is fine, told that there is absolutely no way that a vaccine could have caused this, told that nothing will help, called crazy and asked if their child is ready for their next set of vaccines.

Not everyone has had this kind of experience. I am sure that there are doctors who have taken these parents concerns seriously and helped in any way they can. But when you listen to the parents, a very high majority of them will tell you that no one is listening to their concerns. If no one is addressing these concerns when they happen how are we supposed to know how many kids are being hurt, because that really becomes the question.

Everyone knows that vaccine injuries happen, that’s why we have a system set up to compensate individuals who have had an “injury” subsequent to vaccination. Not touching on it too much, but there is another side deemed ‘pro-vax’. ‘Their’ response to vaccine injury is that it is a very, very, very rare occurrence, so the benefit of vaccines – which is the reduced risk of/injury from disease, infection ect – is greater than the risk of injury from said vaccines.

Is this really true in 2011? If we are hearing of an increasing amount of injury claims does this not make us question if this occurrence of injury is not so rare? I can hear you already saying that government and such would know since we have a reporting system – that the majority of the population doesn’t know about- and we have doctors – who disregard parents claims and don’t note it – and nurses to monitor our children and record what happens.

Fun fact, I’ve talked to over 700,000 people who could not list 5 signs of a vaccine reaction. Of that were over 400 doctors who have never reported a vaccine reaction their whole career. If no one knew what to look for, then how can we properly report it, when it does happen?

So what do we do now? Let’s try listening to these parents to start. I’m not saying let’s believe every claim, but let us at least listen to them for once. I personally in a span of 2yrs have listened to over 100,000 parent’s claims of vaccine injury to their children, but one woman from the UK has gone a step further.  Joan Campbell, a delightful woman who is outspoken and unwilling to give up fighting for what she believes in. Her time and energy has been devoted to this, since she starting posting this;

“I am compiling a list of children who were adversely affected by any vaccine. Please if you could say in about 4-6 sentences what that vaccine was, how they reacted, how they are today and what city the vaccine was administered.” On September 18 2010. I can safely say that she has by no means posted this everywhere and even though it hasn’t been a year she has collected almost 1,000 claims this way.

We all can agree that these are just claims and don’t thoroughly prove anything, but we can also agree that it’s pretty scary how many claims are so similar and if you asked each claimant ‘why wasn’t this reported if it’s true’ most will tell you that they were dismissed, sometimes on the simple statements from the doctor as ‘there is no evidence, vaccines are safe, there is no possible way that a vaccine caused that’ without any investigation and without anything being noted in the records. So let’s start looking at these kids, let’s start investigating these claims and let’s find some answers.

I want to especially thank Joan Campbell for the amazing effort that you are putting in, to make sure everyone is heard and to all the parents who have courageously put down their story.

Please take the time to visit the site www.followingvaccinations.com read the stories – bring tissues – and just listen for a minute.

So why are we still talking about it?

Vaccines and autism, I’m sure everyone has heard something or other regarding this topic by now and the consensus among a lot of people is the following; Vaccines don’t cause autism. So the question is; has this been thoroughly looked at? Is the discussion over?

The very simple answer is, no. So why do all these people seem to think it is?

There are many reasons why people believe that this ‘link’ has been proven nonexistent, but it all boils down to one thing, Headlines. Just do a simple Google search and you will find many, many headlines claiming that there is no vaccine/autism link or that the ‘researcher who claimed a link has been debunked, striped of his licence, ect’, great news for concerned parents everywhere right? Wrong. Firstly, without getting into the Wakefield issue – I’ll do that later- If a paper is removed, it does not necessarily mean that the concern raised in said paper has been looked at and found to be false. Secondly and perhaps most important is READ THE WHOLE STORY. Underneath the headlines you will come to find that studies have been done regarding MMR and/or Thimerosal and autism. I am not going to discuss every individual study – I can and will if need be – but there are a number of concerns that anyone who has been ‘keeping up’ can see. The most important is where is the  ‘s’ on vaccines reported in these headlines. All I keep seeing is MMR, everywhere I go its MMR this and MMR that. I’m pretty sure last time I checked, children received more than just the MMR vaccine. “But” you say “MMR was the vaccine that was claimed to be causing autism.” Now where would someone get that idea from? Could it be the thousands of headlines that appeared stating that the MMR vaccine causes autism?

The truth; every vaccine is being implicated and the concerns are not just about autism.

So is blaming vaccines the new fad? Did this just start in the last 20-30yrs? No to both, in fact parents have been claiming bodily damages caused by vaccines as long as they have been around. There is even a separate court system –we’ll get into that later – just for vaccine injury claims. VAERS is a reporting system for claims of injuries. These things the general public does not know. It is not highly publicized, rather hushed, but nevertheless still there.

The discussion is not over and everyday more and more claims are being made against vaccines. I have been to government websites, emailed them, soared across the interweb of blogs, chats, groups, newspapers, medical sites etc and still no one can provide the following studies, papers or even articles on; every – or just any other than MMR – vaccine and/or the combined schedule in relation to autism.

Time and time again I am sent links to studies not relating to the question at hand. Is something about vaccines causing more and more children to be on the spectrum? So if you have the answers please send them to me. Until then we have to ask; Are we willing to risk our children with things unanswered?