Autism- Hate and Judgement From a Surprising Source- Other Autism Parents

Autism awareness month is over.  And I really haven’t had much to say this year.  There is a reason for that.  The reason is that I am burnt out, and frankly disgusted with much of the autism community.  I have had nothing nice to say about autism awareness this year, so I chose to say nothing.  It’s funny to watch my progression through autism awareness month- the first year after Nate was diagnosed I took him to the Roar For Autism done by Kennedy Krieger and gathered as much information about traditional treatments as I could find.  The next year, John and I attended the TACA conference, and gathered as much information about cutting edge, non-traditional therapies as we could find.  And this year?  We went to Autism Awareness Day at Sesame Place.  And that’s about it in a nutshell.  My own thought processes do not fit into either Kennedy Krieger’s idea of autism therapies or TACA’s ideas of autism treatment.  I am blazing my own trail, like so many other autism parents.  

And once again why is this?  Because no one can really help us.  No one can really tell us what has caused our children’s autism, or how we can assist them most effectively.  That doesn’t stop people from trying, or judging.  I am sick of it.  I wrote about my disgust with the general population’s lack of autism awareness earlier in April, and received so many responses from other parents who felt just the same way.  And yet, here is the most shameful part.  In many circles, the people who are really attacking each other are autism parents who do not agree with one and other.  Or, on the other side, autistic adults who do not agree with parents “treating” their autistic children at all.  And you know what??  I call bullshit to each and every person who has criticized a fellow autism parent.  We all feel very strongly about our beliefs- of what is causing autism, whether it can be treated, whether it should be treated.  But unfortunately at this point in history our opinions are just that- beliefs.  There is not one definitive answer out there.

See, here’s the thing, I disagree with many people’s beliefs about autism.  I choose not to "go after" them or criticize them for their ideas- although today I will mention them to make my point.  For instance, those who say it is a solely genetic “condition”, one that makes an individuals’ brain different and not less, and that this should just be accepted.  I ask you this?  Why have the statistics progressed in this manner?

How much of a jump is that?  And do you REALLY think that this much of an increase is due to increased awareness?  I mean really?  Because I can promise you that if my boys had the same issues and behaviors and were born 15 years ago, I would have known to have them assessed and get them help.  I found out what aspergers was when I googled Jack's symptoms because I was worried.  So once again, I think that theory is a bunch of crap.  I will say it one more time- there is NO SUCH THING as a genetic epidemic.  Genes take hundreds and hundreds of years to change.  There is no way, if this is solely genetic that we should be seeing this degree of an increase.  Right?  So guess what??  To those who think this is genetic (only), a difference in a person, and that it does not warrant any treatment, but only therapies, I disagree with you, sorry but I do. 

And that is how I do feel, that both genes and environment are at play.  And I feel very strongly about this.  However, I do not shove these beliefs down anyone’s throats.  If you have children with autism sitting next to mine eating a big cheeseburger on a big gluteny bun and washing it down with a big glass of milk (packed with hormones) I don’t lean over and say you are a bad parent and what you are doing to your child is inexcusable.  I keep my mouth shut.  Because it is my BELIEF that nutrition has a huge impact on many kids with autism.  BELIEF.  And it is your belief clearly that it does not.  We both have so called studies we could reference, so let’s not waste our breath.  We don’t have a true answer yet.  Although, of course I think I’m right, ha.

The same goes with supplementation, and other treatments- I don’t tell you that ABA/speech/OT/special education are not enough because there are clearly other physiological problems that need to be addressed as well.  That new studies are coming out on these issues daily and that I feel very strongly that you might look back one day and regret not trying these other interventions.  Nope- I run around my house like a madwoman every day getting the boys’ supplements together while making them a GFCFSF breakfast, and intermittently saying, here swallow this, and here, drink this, and praying that I am helping the boys in the long run.   I don’t tell you “shame on you” for NOT doing this, so why oh why are there autism parents and autistic individuals out there shaming parents who are trying these methods, telling them that they should accept their children the way they are and that we are insulting them by “treating” them. 

I hear stories of kids who have shown tremendous progress with these interventions daily telling their moms (now that they can) “thanks for never giving up”.  This means something to me.

So I am pissed off.  Really mad that the autism community has become what it is.  I don’t just blame us parents, I blame the huge amount of conflicting information that we are all handed and asked to interpret.  We all have to draw our own conclusions because no one else has been able to figure it out.  And we all do this differently.  And that’s not our fault- we are all individuals.  And this is a scary damned thing to have to face, every single day, when no one can really tell you what the right thing is.  What I can blame on us parents is the JUDGEMENT.  We all know what it feels like to be judged to be “bad parents” when our kids misbehave, or have meltdowns, hit themselves, cover their ears and yell, or try to run away from us.  And we know these are behaviors associated with autism and NOT our parenting skills.  Can we maybe agree to disagree about autism causes and treatments for now, and band together and build each other up rather than tearing each other down?  Maybe stop calling autism treatments that are not, as you say “proven”, quackery and persecuting  parents who are truly trying to help their children?  It’s my understanding that in order for a treatment to be ruled out, or considered quackery, one needs to know the cause of the disorder first.  Maybe that’s just me.  We are all doing our best, and we all deserve respect for this.  How can we expect others to become “autism aware”, to have respect for what we all go through, when we can’t even do that for each other?    

My Confounding Compounding Issues....

It’s been about 3 weeks now since our last visit to the developmental pediatrician.  I was given many “assignments” for both boys, as always.  After about 15 phone calls and just as many emails, I think that I have found someone who can compound the ridiculous number of supplements that the doctor wants Nathan to take- without sending us into bankruptcy.  To refresh your memory, or in case you missed that post- it was approximately 11 pills, 2 powders and 9 teaspoons of liquid.  Nate is 3 and doesn’t take pills.  I have continued giving him “some” of the supplements, the ones I have deemed to be the most important, by hiding them in his food and drink, just until we come up with a more permanent solution.  He has been a pretty good sport about it and by now I can gauge how many things I can add to his beloved cup before he rejects it.

It was way more complicated to solve this issue than I had originally imagined.  Our regular compounding pharmacy was pretty slow to respond and their “cocktail” was a pretty standard formulation which they did not seem very willing to alter.  I found another compounding pharmacy that was eager as could be to assist me.  This sadly should have warned me of what I was in for.  I gave them all of the supplements and doses and after several days they called me to let me know that they had come up with a liquid formulation that would be twice a day.  Awesome!  Ha, not so much.  A one month supply of the compound was….wait for it….$250!!!  And they do not take insurance.  This would be in addition to the other supplements both boys are already on.  And if it proved to be helpful for Nate we certainly would want Jack to try it too- there was just no way. 

Back to the drawing board.  I located another compounding pharmacy who wanted to speak directly with the doctor- after many, many attempts we finally made this happen.  I called to check in with them yesterday and they said they need a little more time, but it looks doable, and they estimated the cost to be about $60.  This sounds a bit more reasonable to me, and they suggested I speak with our insurance company to see if compounded vitamins are covered, as they will provide me with the appropriate paperwork for reimbursement if that's a possibility.  I am not holding out much hope, but even if they don’t cover it, we can handle this, especially if it works!  They are also able to provide a flavor that will be palatable, and keep it gluten and dairy free.  Ironically, they are 5 miles from our house- who knew?

Anyway, keep your fingers crossed that we have really finally solved this issue- oh and also that it helps!  After all of this….well I am just praying.

Uncle!!!!!

I am crying uncle.....

OK, first of all, I want to let you know that I recognize and appreciate that my child is not suffering from a life-threatening illness.  I am so grateful that the supplements we are instructed to give him are to improve his life, not save it.  However, the picture above is of all of the supplements Nate needs to be taking right now, at least orally.  The shots and creams are not included.  The omega bottle is 2 tbsp a day, the red bottle, 9 tsp a day, and then the three powders, and 10 pills.  Nate of course cannot swallow pills so all capsules have to be opened up and hidden in drink/food.  Almost all of the pills are parts of the "mitochondrial cocktail" he was prescribed by the developmental pediatrician last week. 

Here is a bit more information on this:

http://www.autismfile.com/science-research/has-your-child-with-autistic-symptoms-been-properly-screened-for-a-subset-of-mitochondrial-disease-known-as-oxphos

This is all well and good.  I am enthusiastic about trying this with Nathan, and possibly Jack in the future.  Both of them had lab values that indicated this could be helpful for them.  But I have come to the conclusion that with the current supplements we have, getting all of this into Nathan is just not possible.  I have hidden things in his drinks (which I have been doing for years), I have tried mixing them with spoonfuls of maple syrup, almond butter, jam, and chocolate syrup. I have tried tucking the powder inside a fish stick, inside a chicken nugget.  I even tried in his fish oil (it's mango flavored).  Not gonna happen.  Now- in the past, (soon after diagnosis) he didn't notice or care about the odd tastes or gritty textures of the supplements.  I would bake calcium, vitamin c, and a multivitamin into his almond bread and he would gobble it right up.  So, his increased awareness is obviously a good thing, however, in terms of giving him supplements, I am screwed. 

I started doing some research on Saturday night because I figured there are lots of people confronted with this issue. 

I found this:

http://www.mitoaction.org/blog/qa-compounding-pharmacists

A compounding pharmacy assists mitochondrial disease patients by providing vitamins and supplements in a compounded capsule or liquid form depending on the needs of the adult or child patient.  There are many benefits to working with a compounding pharmacist.  Primarily, a compounding pharmacy can combine the vitamins/supplements in order to minimize the number of vitamins and supplements required, as well as to make the medication more patient more palatable in liquid or capsule form. They work closely with the patient's physician and take into consideration the patient's diet and diet restrictions as well as the overall medication plan.  A compounded medication is then developed which is unique for each patient and his/her specific treatment plan or prescription . The formulas are based on multiple variables, including the prescription, the patient's symptoms, the patient's diagnosis, weight, allergies, physician recommendations, etc. The goal is to work with the physician, patient and pharmacy in order to develop an ideal mix  (or "compound") of these vitamins and supplements that offers the patient the most ease and the least side effects.

We have been working with a compounding pharmacy for about two years now (www.leesilsby.com), they provide the boy's methylcobalamin shots, and we order most of our supplements from their sister company (www.ourkidsasd.com).  To give you an idea of how useful compounding pharmacies can be- they ensure medications are gluten and casein free, they use very "pure" formulations, and they individualize medications as needed.  For instance, when we all had influenza A last winter, tamiflu in liquid form was out of stock everywhere.  We have a local compounding pharmacy, right below our pediatrician's office, and when I took the script there after trying all of the traditional pharmacies who couldn't help me, they said, yeah we're out of the liquid.  That's why we are opening the capsules up, re suspending them, and adding flavor.  I mean really- this is not that difficult.  How many kids could have benefited from this last winter if only they had known this was available? 

So I went to the Lee Silsby website and typed in mitochondrial.  Under the list of "medications we carry", lo and behold was-

Mitochondrial Formula Suspension

I emailed them immediately and heard back from them this morning.  They are going to consult with our pediatrician and work on a suspension that will be much easier for us to give to Nathan.  Thank goodness for this, keep your fingers crossed that it works out!

Thank You For Stimming

What a freaking day.

I took the boys to see their developmental pediatrician today, which is always a treat.  Don’t get me wrong, I like him, it’s just always overwhelming, discouraging, enlightening, hopeful, and depressing all wrapped into one. 

For Jack it was more of a “tune up”; try these supplements, let’s get a few more tests, progress is there and we’re happy.  Not to poo poo it, because there were significant changes to be made, but it was all stuff I can handle.  And we also don’t want to make too many changes right now in light of the study.

Nathan was a different story.  I pretty much laid it all out for the doctor (mind you, this is a two hour appointment, not your typical doctor’s visit).  I continue to be extremely worried about Nate’s lack of progress.  I am worried about language and skills, but most importantly right now I am worried about his stimming.  How frequent it is, how intense it is.  I mean we don’t even notice some of it anymore because it’s just the norm- the lap running, the waving things in front of his face, the humming, and the repeating of sounds over and over again.  The constant need to be squeezed- arms, legs, sometimes head.  And I have described this before in these appointments.  But Nate hates any doctor’s office and usually curls up on my lap.  Today he seemed to relax a bit- he’s been to this office a lot now, and he got restless after we were in that small room for a while.  He got down; he ran his laps, made his sounds, waved his fingers.  The “full Monty”.  And the doctor saw all of it.  You could see his level of concern growing as he watched- as were the number of recommendations he was writing down.

One of the things he said is something I have been saying all along.  This just feels like yeast- the stimming, the grainy poop (sorry), the crazy laughter.  The fact that he improves on nystatin but then immediately reverts to his old behaviors when it’s stopped.  All of these things point to yeast.  Not to mention that this issue tends to crop up in kids (note that these kids also have a genetic predisposition to this stuff) who are on lots of antibiotics when they are very young, and also on nebulizers.  Yes, Nate was on both.  Repeated upper respiratory and ear infections.  Lots of wheezing, which has since resolved.  The antibiotics kill off all of the good bacteria in the gut and leave it vulnerable to yeast growth.  Repeat this multiple times and you could have a real mess on your hands.  That’s where the doctor thinks we might be.  If I could offer any advice to parents of little guys (and I usually don’t dispense advice in this blog) it would be this:  put your kid on a probiotic.  They have powdered ones you can mix in with breast milk or formula or even water.  Give your little one the good bacteria.  It’s a relatively cheap way to prevent this yeast overgrowth.  Our world is TOO antibacterial at this point and I really believe it is causing more harm than good.

Long story short, the doctor wants me to send Nate’s urine for amino acid testing.  The results of this testing show if certain byproducts of yeast or clostridium (another chronic gut infection) are present, and thus confirm the presence of the issue.  There are few direct ways to test for this, but this is one of them.  Of course this is not covered by insurance.  We have put it off and treated empirically for suspected yeast.  It’s time to bite the bullet and send off a check for $300 to have my kid’s urine tested.  It’s just time.  So he has his specimen collection bag on tonight- plus two diapers and zip up pajamas and tomorrow FedEx will pick up his pee (still makes me giggle).  Once the results are in we will use them to guide our next steps- likely stronger probiotics, a stronger round of fluconazole, flagyl if needed for clostridium. 

The other step we decided to take today was to start a “mitochondrial cocktail” for Nate.  This sounds scary somehow right?  But really it’s just a certain combination of supplements that help Nate’s mitochondria to function better.  Apparently some of Nate’s more recent lab results have been pretty indicative that this is a problem for him.  Here is a little more info on what that means:

http://mitochondrialdiseases.org/autism/

What is the role of mitochondrial dysfunction in ASD?

All ASD is not mitochondrial disease. However, mitochondrial dysfunction has been found repeatedly to be prevalent in this group of children and adults. The brain and muscles require a tremendous amount of energy to function normally. Deficiencies in the ability to fuel brain neurons – as may occur with mitochondrial dysfunction – could lead to some of the symptoms of Autism.

 

Because mitochondria make ATP, as well as perform vital cellular tasks, mitochondrial dysfunction can result in less energy available to fuel the high-energy needs of the brain and muscles, and also leave free radicals in the system where they can cause damage. Overall, there is a large and growing body of research showing that individuals with ASD often have significant mitochondrial dysfunction, which may be a cause of, or contributing factor to, their development disorder.

So here is what the “doctor ordered” (before reading take a deep breath- I know I have to):

Carnitor 3 tsp 3x a day

Ester C 1000mg 2x a day

Vitamin E 400 IU 2x a day

Bcomplex 100mg 1-2x a day- B1, B2, B3, B6 (already gets B12 injections)

Alpha Lipoic Acid 1000mg 3x a day

Biotin 10mg 1x a day

saccharomyces boulardii (second probiotic)

and continue everything he was on previously

And to be honest, there are 2 more that I, the nurse, cannot decipher due to his chicken scratch so I will have to call the office about those. 

Can someone explain to me how on earth I am supposed to get all of this into a child who doesn’t swallow pills??  Seriously?  I decided to experiment with different substances to mix these with this evening- thus far he has rejected almond butter, chocolate syrup, and applesauce.  Yet he somewhat accepted fish oil, which he gets every day.  Any

suggestions are welcome.

I want to thank Nathan for stimming in the office today.  I think it was a very good thing for the doctor to see him in action.  I think it pushed him to be a bit more aggressive.

That’s about it for tonight.  Excuse me while my head explodes…