Friday, 28 February 2014

The Fabric of An Autism Family- Quite the Intricate Weave

The other day, I was talking to John about taking the kids somewhere.  Let me rephrase that.  I brought the idea of taking the kids somewhere to John’s attention and didn't need to wait for an answer.  Just a minor shift of facial expression is all it takes anymore.  I can read what my husband is thinking and feeling via maybe 2 words of a text, by looking at his face, by the tone with which he says hello, by how long it takes him to come into the house when he gets home at night, by how many times he hits the snooze button in the morning, and most importantly by the way he looks at me. 

This does not happen overnight in any relationship.  It is a dance and ours is still in the choreography phase as we speak.  I guess that could be said for everyone right?  BUT, we have a dance, we are good at it, and we are fine tuning our steps daily. 

I want to talk about how this “dance” is affected by having children with autism.  When our boys were first diagnosed (within 6 months of each other), all we could ever see in each other’s eyes was distress, fear, anger, sadness.  It felt like our relationship was freeze framed in this way.  How can you read your partner when they are continuously grieving?  The pain was all I could see in his eyes and I am sure the same was reflected in mine.  During this time, there was really no way to move forward in our marriage.  We had to deal with an issue so huge, so life changing that we were literally paralyzed emotionally.  We were both so vulnerable and yet closed off from each other.  I say this not to evoke sympathy, or even to explain OUR lives, but to inform those who may have relatives going through something like this now.  You cannot get an accurate picture of a relationship as a whole when two people are devastated, when they have been through something that can most accurately be described as trauma.  

But this is not the point either.

The point is our communication now.  How our dance has changed over the past several years.  If other couples learn to communicate in the ways I mentioned above, couples with special needs children are all but telepathic in their communication.  In an instant, if we look at each other and see a certain glint in each other’s eyes, we will grab our kids and haul ass out of a store, restaurant, museum etc.  We have a whole new set of communication techniques now.  Before, if one of our children was melting down, we were both frozen, because it was traumatic for us.  I mean, who reacts appropriately the first time their kid starts banging their head on the floor in a restaurant?  If you think you would, listen closely, did you hear it?  Golf clap.  Because it’s bullshit.  It’s a learning curve, one in addition to the one that comes with parenting.  And for us, you can throw into the mix that we have two boys on the spectrum and completely different things set each of our children off.  It makes it all but impossible for all of us to go anywhere.

John, poor guy, resists family outings with everything he has.  So last weekend, I convinced him on a 60 degree day to go to Chick Fil A then the park to play.  Seriously we were sitting in Chick Fil A for less than 10 minutes when Nathan started gagging- with what may have been a relapse of his stomach flu or a reaction to one of his medications (sorry Jo :-) ). I didn't want to look John in the eye, I knew I wouldn't like what I was going to see.   And it wouldn't  have even been “time to go”.  It would have been “aha, now you remember why I don’t like to go out with both kids at once, and why we always go through the drive thru.  Now you remember that it NEVER ends well.  Now you remember why I offer to stay home with a kid pretty much every weekend while you take the other one out alone.”  One look.  Dude, I kept my eyes to the ground, lol.  

Without looking we both knew it was time to run anyway.  But no one got upset.  Just another day.  I am trying to figure out how to phrase my point.  I guess I am trying to say that there are many learning curves in life.  There is a continuous one in a marriage or committed relationship.  And another continuous one that comes with being a parent.  And then there is (what feels like) the Mount Everest of being a parent to two children with  autism.  It doesn’t matter how in shape you may think you are at the beginning of the climb, you’re gonna suck at it, I can guarantee it.  At least in the beginning.  All of the rules others have taught you, or that you have learned along the way go out the window.  For me and John, there is often no time to talk, to communicate about our kids’ behavior or needs.  We need to be able to grab them and run- together.  We need to be able to say no to negative situations, together; often without having time to consult with each other.  We need to be able to poke each other in the middle of the night for the rest of our lives and have faith that we will help each other, even if it means cleaning poop off the walls- again.  When I call John at work to tell him that when I told Nate to “touch bird” in a book he touched both of them instead of just one, John needs to know that he should freak out and be excited- for the rest of his life.  Even if it’s the only progress I ever report ever again.  Because we are an autism family, and every single step matters, even if it’s more like climbing a stairmaster (getting nowhere) most days. 

We are learning this new dance, over time.  All autism families are.  But I’m not going to lie to you, it quite often sucks.  We are in a completely different ballroom from typical families.  The music is quieter so as not to hurt our children's ears, the lights are dimmed so that they aren't too stimulating.  And we really have to watch the tempo or we may totally mess with one of our kids' vestibular systems.  Did we understand all of these little innuendo's several years ago?  Of course not!  We thought the disco would be just fine, that the strobe lights wouldn't cause issues, that the crowds would be fun.  Now we know better.  Our familial relationships have to adjust to suit these needs yes, but more importantly, we have had to learn a whole new marital dance.  The good news is that even if your partner is stomping all over your feet and dropping you at the beginning of the journey, if you just hold on, you WILL get the hang of it.

Wednesday, 26 February 2014

And Just Like That- Nate's Back

It’s freaky really.  In a good way, but still freaky.  Nearly two weeks ago, Nate’s pediatrician agreed to put him back on the antibiotics and antifungals that he was on in December when he had a big burst of language and joint attention.  In the past two days, several people have told me they see a huge difference in him. First up today was the speech pathologist at the private practice where he is now being seen.  He wouldn’t cooperate with what she wanted him to do, but he used several words, and more importantly he was paying attention.  To the point where he did such a typical little kid thing that I almost laughed out loud.  He was screaming because he was angry that I picked him up early and took him somewhere as offensive as SPEECH.  Eventually he started to smile and play with the speech pathologist, and then he would realize what he was doing and his face would crumple and he would start screaming again.  He had enough focus to remember that he was supposed to be upset, not having fun.  I see little kids do this all the time- just never mine.  The speech pathologist noticed it too, and mentioned the fact that he wasn’t running laps like he had been before.  When she handed him a ball he stared at it (it was translucent) and said ball.  He did play with the ball and a little bird for a couple of minutes, but the session was only 30 minutes.

Again this evening, when I picked up Nate at Cisco Center one of the teachers mentioned that Nate seems different (and no she did not know about the medication changes).  In fact she said this- “remember like a month and a half ago when Nate was repeating everything we said and really making progress?  He seems to be acting like that again this week.”  I told her about the medication changes, and thanked her for letting me know what she saw.  It’s just so encouraging when people who aren’t aware of any changes in his treatment notice these differences.  It’s also confirmation that I am headed in the right direction.  I did, however, already notice it myself.

He is definitely repeating, he is definitely stimming less, although he still grinds his teeth painfully frequently.  And two days ago now, while I was changing his diaper before school he picked up his brother’s stuffed bird, handed it to me, and said “bird”.  I freaked- this child only names food objects, and usually not even then.  Usually it’s “more” “go” “bye bye”, etc.  He said bird!  Appropriately.  Then- while still holding the bird he said “bird fly”.  That’s all it took to turn me into a snotty mess.  He repeats this on command now, which is great, but the fact that he used the terms in the correct context means even more.  He has had several other new words with us in the past few days, and he is definitely more aware of his surroundings.  Get a load of this!

One other thing that I started with him about a week ago was grapefruit seed extract. 

Grapefruit seed extract is a highly concentrated fungal and microbial balancing extract. Grapefruit seed extract exerts these effects within the gastrointestinal (GI) tract, promoting healthy microflora and gut ecology. A preliminary clinical trial reported that grapefruit seed extract supplements helped support healthy GI function and comfort. An in vitro study using human skin fibroblast cells indicated that grapefruit seed extract promoted healthy gram-positive and gram-negative balance. Other studies support these findings, citing that grapefruit seed extract promotes a healthy environment when exposed to a wide range of bacterial biotypes.
We have tried this one other time in the past without much effect, but this time he is also on the antibiotic and antifungal.  I also ordered another natural supplement to try- CD Herbal

CD-Herbal™ is a powerful hypoallergenic blend of herbal components that support gastrointestinal health by helping control undesirable gut flora. This product was formulated to be used with CD-Biotic™, a specialty probiotic designed to support healthy gastrointestinal flora when certain difficult bacteria have populated the gut.
Under certain circumstances and very frequently among sensitive individuals, certain strains of bad bacteria become concentrated in the gastrointestinal tract and are very difficult to eradicate using conventional probiotics or drugs. This is especially true if the strain of bacteria is a spore-forming organism. Spores of these types of organisms can lie dormant in the gut following various types of control procedures, only to repopulate when conditions are right.
CD-Herbal™ contains thyme, oregano and curcumin (turmeric) herbs, all of which can exhibit inhibitory support on harmful gut flora. It also contains cumin, an herb which stimulates the growth of the probiotic strain Lactobacillus plantarum, which is also present in CD-Biotic™ and instrumental in helping crowd out undesirable flora.
This hasn’t arrived yet, but it should soon.  Nate has also been on curcumin in the past with a little improvement, so I am wondering how he will do with this combination.  As you can see from the ingredients, it’s all very benign stuff.  I am doing these things while waiting for an appointment with Dr. Usman.  We submitted our paperwork last Friday, and thus far received an email response of two words- thank you.  That’s pretty much what I expected, knowing how busy the practice is.  I guess I will have to start my stalker mommy calls in the next week or so.  I feel like we at least have a reasonable plan in place until we get in to see her.

On that note, I just want to mention how incredibly touched our family has been by the donations we have received toward our trip to Illinois.  I mean, some donations are from people we have never met, people that I have never even spoken to.  We have also heard from people that we should not be hearing from, people who have enough on their plates without worrying about us.  There’s really nothing else I can say except thank you for your kindness and generosity.  And thank you for having faith that I am doing my very best for my children.  That is what means the most.

Thursday, 20 February 2014

Fighting the Good Fight for Our Kiddos- The Battle for Habilitative Services Continues

If you have been reading my blog for a while, you will remember how excited I was last fall when I found out that my sons’ OT and speech could be covered by the habilitative services benefit our insurance plan offers, something that was enacted last May. 

Since that time I have been on the phone with CIGNA approximately 8 times, as they have continued to deny my sons’ claims, starting in October when we first billed under autism and habilitative services, all the way through two weeks ago.  Just so that you know I am not crazy (in this regard, ha), here is the documentation, first the “update bulletin” put out last year, and then the exact wording from the open enrollment booklet for this year:

 This document printed in May, 2013 takes the place of any documents previously issued to you which described your benefits

Habilitative Services for Children Under Age 19
(Including physical, speech and occupational therapy, autism, autism spectrum disorder and cerebral palsy)
Calendar Year Maximum:

100% after the $15 PCP or $15 Specialist per office visit copay

Cigna: Open Access Plus In-Network Coverage Period: 01/01/2014 –
Summary of Benefits and Coverage: What this Plan Covers & What it Costs Coverage for: Individual Plan Type Open Accessst Ifr
Limitations & Exceptions
Home health care No charge, after deductible Limit 16 hours
Rehabilitation services $15 co-pay/
Coverage for Rehabilitation, including Cardiac
Rehabilitation, service is limited to 60 days
annual max
Habilitation services $15 co-pay/
Covered for children under age 19 (Including
physical, speech and occupational therapy,
autism, autism spectrum disorder and cerebral
Skilled nursing care No charge, after deductible Coverage is limited to 100 days annual max

So of course I called them, right?  First I was told that habilitative services were not covered AT ALL.  I faxed them the documentation, and they said, how about that.  Then when the claims were still denied, they said they did not have an appropriate “code” to bill under.  When the open enrollment bulletin came out, showing everyone that this benefit is offered I suggested nicely that they get on the stick since soon I would not be the only one who seemed to be aware of the benefit.  Did they?  Nope.  Then they said that this service was not covered for autism.  Ummm, see above.

But I thought surely, definitely now that we are in 2014, after this was in the open enrollment bulletin, it would no longer be an issue.  Logical reasoning would bring you to think that this would become a no-brainer when it has been printed for an entire segment of local government to see and enroll for.  But, alas, I forgot that this is not meant to be logical.  So the denials have continued.  We are lucky to be with an OT practice that is kind of in the fight with us, and understands that I am doing this for the greater good.  Because right now, we are at the beginning of a calendar year, and if I wanted to make my life easier, at least temporarily, we could go back to billing as rehabilitative services for the next 60 visits.  But I refuse to do this.  I want the company to do it right.  And even more importantly, I want these services, which are so needed and deserved, to be provided for our kiddos with autism.  I want validation that these services are not “rehabilitating” anything- they are working on life skills, they are habilitative.  So being the glutton for punishment that I am, I called Cigna again today. 

And I think it happened.  I think I got the “magical” person- you know the one- the representative who is there to really do their job and who actually cares that you get what you need?  She pasted notes all over the boys’ records (in the computer) with details of the habilitative benefit and confirmation that it exists and resent the claims for payment.  Even more- she gave me a confirmation number.  So I can call back and say “yes huh, she did too say it would be fixed and I have numerical proof!!!”  Am I confident that this is it?  That there will be no other hurdles in this regard?  Not at all.  But I do feel like we took a big step in the right direction.  We, as parents to these amazing kiddos, have to fight to make sure that these benefits continue.  We can’t make that happen unless we use them.  And if we have to fight to use them right now, well then, so be it. 

Friday, 14 February 2014

Valentines- You Have To See This!!

Yesterday I set about a dreaded task with Jack, one that I will admit, I put off as long as possible.  VALENTINES.  As in school valentines- writing your name 26 times valentines.  This is war, or it has been for the past several years.  And frankly, we don’t even get a class list anymore, so we have to leave the “to” spot blank- seems so impersonal and just cheesy- so even mommy lacked motivation on this one.

Jack has never been a fan of fine motor activities.  In fact, when he was little, I always felt like I was doing something wrong, not making coloring enticing enough, because he avoided it more than any child I had met in my nannying days.  And as a formerly (and sometimes still) avid colorer, I just didn’t get it.  When we went in for his initial evaluation and they told me he was significantly behind in fine motor, I totally thought I was to blame.  Maybe I didn’t push it hard enough?  My feelings on that all changed when I started volunteering in Jack’s kindergarten class- watching the little 5 year old girls dot their I’s with hearts and be done with activities about 15 minutes before Jack (but also 10 minutes before the other boys).  It wasn’t me, it was him.  He was really good at avoiding it too- “mommy you show me”, “you do one, and then I will”.  I bought it hook line and sinker, and then he fled before it was his turn. 

In first grade part of the plan for Jack has been to take some of the pressure off of his writing.  He has a keyboard, he has a scribe, and it has helped him catch up academically quite a bit.  It took away the thing he tries so hard to avoid- it’s out of the equation, and as a result he is right on level for spelling and reading, which was not the case a year ago.  That being said, when we do spelling activities at night, my gloves quite often still come off.  His special educator designs special activities for us to choose from, they are often sensory activities.  For instance, we write his spelling words on paper that is on top of a piece of burlap, or write his words on a piece of paper that is taped to the wall.  Or he writes the words on daddy’s back or on the rug.  This has helped to a certain extent, although I’m not going to lie, he still avoids it when he can. 

When I approached him about Valentines (planes themed of course) and told him he needed to write his name a bunch of time he initially threw a fit.  I explained to him that if he wanted to attend his school party he needed to do his valentines, or the kids’ feelings would be hurt.  Blah.  I told him he might not get a valentine cookie if he had not done his cards- bam, that started us off.  My kids- extremely motivated by food J

He started out haphazardly, almost scribbling on these tiny pieces of paper.  One of his biggest challenges is control- and this manifests itself when his letters are huge and sloping down the paper.  Forming small letters has been so difficult for him- we draw boxes to put the letters in, write lines for them to stay above, but it is just really tough.

So here is how they started out….

I told him to try and make the letters smaller so the kids could see who the card was from….

So. Much. Better---- he started getting angry and frustrated when the letters were too big- you can see below that he started stabbing a card with the pencil.  But then he did the most amazing thing (no prompting).  He erased his mistake and fixed it!  He calmed himself down enough to realize there was a solution, took care of it, and moved on.  Ummm, hello???  For him to do this, in relation to fine motor, something he detests, is amazing!!!  Wish I could show his pre-K teacher and OT now!

I know that for many parents of kids Jack's age this looks very elementary and his writing may look very messy.  That's why I am posting these cards- he genuinely struggles with this, as many children with autism do.  This is after years of private OT, school OT, mommy OT, etc.  And this is huge progress- I am so proud of him. 

Wednesday, 12 February 2014

Nate's Ups and Downs

Nate has been so all over the place the last few weeks.  One day he is repeating words and very engaged, and the next you can’t get his attention no matter what you do- his fingers are far too fascinating.  One minute he is falling asleep on me downstairs at 6pm and before I know it he has climbed into our bed at 1am and stood staring out the window over our bed shouting for hours.  The only way to calm him is to squeeze his legs and feet for like, an hour.  This is all complicated by Jack waking up and insisting he needs me- so I run to the next room to sit with him, and Nate starts stimming again and wakes back up because I have stopped squeezing, and our puppy Darby, who is distressed if I leave the room starts yipping like a maniac.  Night time has never been our strong suit over here, and the past few nights have been nothing short of brutal. 

Seriously though, I went to pick him up today from Cisco, and he looks at me and says “go bye bye”, then says open at the door, up at the car door, etc.  It’s like last night never happened.  He is hardly humming or grinding his teeth at all tonight.  We started him back on antifungals and antibiotics last week after the  regression we saw when we stopped them several weeks ago.  He seems to be showing some “die off “ symptoms….
What is die off?
Die-off is short hand for a Herxheimer reaction (Jarisch-Herxheimer reaction).  This term was coined to describe what Karl Herxheimer saw when he administrated drugs to patients.  The reaction is thought to happen when toxins from dying pathogens (viruses, bacteria, parasites, candida, etc.) overwhelm the body’s abilities to clear them out.
This creates a toxic state in the body which produces symptoms like:
  • fever
  • muscle aches
  • chills
  • headaches
  • skin rashes
  • excess mucus production
  • brain fog
  • Increased GI problems (diarrhea, constipation, etc.)
These symptoms are often reported by many to feel very flu-like or cold-like.  Your whole body is generally sluggish and it usually feels as if your body is working harder, almost fighting something.
The changes that might cause die-off are usually:
  • Switching from processed food to a real food diet (death of pathogens by starving)
  • Starting or increasing probiotics dosage (death of pathogens by good soldiers)
  • Starting or increasing dosage of antiparasitic, anti-yeast or antibiotic (death of pathogens by bombing)
In each of these scenarios, the change in treatment will cause substantial changes in gut flora and knock out a big portion of the bad guys.  When that happens, they release toxins that need to be excreted by the body.

The first time we did an antifungal treatment with Nate was HELL.  This is not an exaggeration.  It was November 2011.  His pediatrician put him on nystatin and warned us that his symptoms might worsen “a bit” if he truly had a yeast problem.  Fast forward 24 hours, he was banging his head on the walls repeatedly, crying continuously, would eat nothing and having nasty, grainy diarrhea.  Sorry, but if you’re going to hang on my blog, you are going to hear about poop.  It’s a huge part of my mommy life.  When these symptoms appeared (on Thanksgiving) my gut instinct was to stop giving him the nystatin.  He was so uncomfortable!  This of course is not the answer- this is one of those it gets worse and then better scenarios.  We had to wait through the symptoms (and give activated charcoal to counter them) and then we saw our first sliver of eye contact since his regression.  The issue has always been that we see improvement on the anti-yeast medications, but the minute we stop, he starts right back down the same path…

We went to see his pediatrician last Thursday to talk about this.  She is not as experienced as Dr. Brenner with these issues, however she makes herself very accessible and is learning with us.  I wanted to discuss Dr. Usman’s protocols and some others that we are reading about right now.  I am very torn trying to decide what direction to take and wanted some advice.  While I still have not decided 100% on what we are going to do, I did receive a tremendous amount of support, which I really needed.  I need reassurance that the symptoms that I keep seeing disappear and reappear are real.  Sometimes, I feel like because I want to see progress so badly, I am not able to be objective.  I rely heavily on his teachers, therapists and doctors to confirm for me that there are changes (both bad and good).  Most often, I am seeing things accurately- it just helps to be sure.  The decision we came to was to buy a little bit of time before intervening with a new protocol or new doctor.  I need to be confident in my next move- most importantly because my children are so very precious to me, but also because any move I make at this point will end up being very expensive for our family.   So we placed Nate back on the antibiotics and antifungal he was on in December when he had his huge burst of speech- he started last Friday. 

And stopped sleeping and started stimming even more on Sunday.  His teacher emailed me yesterday to say he didn’t seem to be feeling well- I am sure she wasn’t expecting me to feel vindicated when I heard this, but I did.  Die off.  Pure and simple.  He will be a mess for a week or two- we’ve been there and done that, but hopefully it will help him engage and feel better overall in the long run.  Obviously we have no plans to keep him on antibiotics and antifungals indefinitely, although you would be surprised how many kids with autism thrive in this situation.  As a friend of mine pointed out the other day (I hadn’t thought about it in a while), many kids with autism experience a decrease in symptoms with fever. 

Dec. 3, 2007 -- Children with autism appear to improve when they have a fever, according to intriguing new research that could lead to a better understanding of the disorder.
Fever was associated with less hyperactivity, improved communication, and less irritability in the study involving children with autism and related disorders.
Anecdotal reports of improvements in autism symptoms related to fever have circulated for years, but the research represents the first scientific investigation into the observed association.
While kids with autism might be expected to be calmer and less hyperactive when they have fevers, the improvement in communication and socialization seen in the study suggests that fever directly affects brain function, pediatric neurologist Andrew Zimmerman, MD, of Baltimore's Kennedy Krieger Institute, tells WebMD.
"The improvement in symptoms may mean the underlying wiring of the brain (of an autistic child) develops more normally than we have thought," he says, adding that the problem may lie with the connections within the brain responsible for sending information.
Continue reading below...
"Somehow fever appears to be changing the ability to make these connections," he says.
4 out of 5 Kids With Fever Improved

So in my mind, this is all connected (of course maybe I'm just nuts).  Fever response is there to kill off bacteria, no?  As do antibiotics?  So why are scientist focusing on how fever response affects the brain function?  Why aren’t they looking at the idea that the fever may actually be temporarily improving a chronic infection?  An infection that the body is not recognizing or trying to fight on its own?  We already know that there is a correlation between strep and autism. 

Does it have to be strep specific?  And how does this relate to other autoimmune disorders.  Ok, sorry, won’t take it that far right now. 

So since we can’t keep him on antibiotics and fluconazole forever (and they only improve the situation, not fix it), what are we to do with this information?  Well that’s where Dr. Usman comes in.  So I am going to continue to research this direction, with several different options out there- even the pediatrician is willing to try a few other options.  In the meantime, Nate’s current symptoms are reassuring me that we are on the right track here. 

Thursday, 6 February 2014

After Many Requests....

Many of you emailed or messaged me to tell me that you couldn't find the button in the toolbar- so here it is in a post.  Thank you once again for your generosity (and tenacity for that matter!!)

Also, I am pasting a link to a video of Nate "before".  For those of you who don't follow the blog on FB

Wednesday, 5 February 2014

Asking For Your Support In Our Next Step

I never in a million years thought I would be doing this, but here I am.  You will notice (or please notice) a new feature on the blog in the upper right hand corner.  It is a PayPal button that says “donate now” with the title “Nate’s medical fund”.  I have been asked to do this multiple times by friends and family.  I have always said no, we will be fine.  I have turned down all offers, except for a swing (thanks MeghanJ) and then an anonymous donation made in Nate’s name to Cisco Center last year- which happened randomly and with no requests- just some amazing person who wanted to help.  Well, we have reached that point.  If you read my post last night, you know that I have been feeling lost.  Well today I spoke with Nate’s pediatrician, several experienced autism parents, my mommy, and of course John.  Here is the conclusion I came to:

We have exhausted the options for Nate that are covered by insurance.  I have taken him to the only “DAN” doctor in our area that takes insurance- Dr. Brenner- he can only take us so far.  We have been to Kennedy Krieger and done the SEED study, we have been to NIH and continue on the Aricept study (with some small improvements).  I have given Nate injections; we have tried very strict special diets.  We have tried, I would say, close to 30 supplements.  If anyone wants to try something, give me a heads up, I have a cabinet full of residuals (like all autism parents).  We have done OT, early intervention, ABA, massage, brushing, transdermal creams….with some improvement.  So here are my options- accept that Nathan is getting help and hope that in time he improves, or push further.

As I was watching him in his private speech evaluation today I couldn’t help but think that we are not done here- not by a long shot.  The speech pathologist tried so hard to engage him, and his stimming was just off the charts- teeth grinding, humming, dangling paper, running laps, flapping….the whole enchilada.  The speech pathologist also happens to be a holistic nutritionist (convenient no?). She asked me about yeast.  Well yes, I do believe he has yeast, thanks for asking- he gets better while on antifungals and regresses almost immediately when we stop them. Same with antibiotics.  Each time we start a new supplement, there seems to be some minor improvement, and then he reverts back, and in my eyes, sometimes seems even more affected.  I have done a ton of reading and I have been to conferences, listened to many practitioners present their theories. 

The one that has resonated with me the most was presented by a physician in Illinois, Dr. Anju Usman.  She is a pediatrician who became interested in this field when all of her children had autoimmune issues.  She became entrenched in figuring out why these conditions have become so prevalent in recent years, in what is causing all of this.  Here is her practice’s website:

Here is some information on her research and treatment plans:
I will not even attempt to explain all of this.  Here is what makes me feel strongly that this is the correct direction for Nate.  Dr. Usman believes that much of our kids’ autistic behavior is caused by chronic infections, mainly in the gut, which produce substances that impact cognition.  On top of this, kids like Nate, who have the MTHFR mutation are more susceptible to these to begin with because they have impaired ability to fight these infections off.  Because of this, they end up on antibiotics when little- a lot (check for Nate).  The antibiotics also kill off the good bacteria that keep yeast and other pathogens at bay.  This allows for overgrowth of these bad bugs.  On top of that, the bugs feed on many of the things our kids are deficient of (vitamin B12 for instance).  So lab results show deficits.  What do all of us responsible parents do?  We SUPPLEMENT.  We supplement the bugs, help them grow.  This would explain why initial improvement is seen with a new treatment and then it stops being effective.  These bad bugs form what’s called a “biofilm”, which is a protective layer that keeps antibiotics and other agents from penetrating and killing them off.  So antibiotics and antifungals will kill the bugs that are circulating- but they just come right back, because they are protected.

The goal is to break up the film, treat the bugs, and rid the body of toxins.  For those of you who don’t know, I studied biochemistry before I went to nursing school.  This just makes sense to me.  It makes sense.  Nothing has made sense in a long time.

So maybe you think I am crazy.  I’m ok with that.  This is the one avenue that I have not explored that I have a reasonable amount of confidence in.  Our pediatrician is extremely supportive of us exploring this.  She is brilliant, and that helps.  For those of you who think I am torturing my child for naught, I will tell you this.  Nathan is lost.  I know my child.  I knew him before autism.  I held my neurotypical child in my arms for 18 months.  I received assurances from all directions that unlike Jack, he had great eye contact, was babbling, was then speaking, and was playing with toys appropriately.  He was so happy, he slept.  All beautifully boringly normal.  And that changed.  I saw it change.  Today I had a jolt of memory while we were in the speech evaluation.  The speech pathologist was holding a ball out to Nate and asking him to throw it (he didn’t do it, he mouthed it).  I suddenly flashed to Nate at 16 months standing in the foyer with his daddy playing catch and SAYING “I throw ball”.  And I will never get the image of my beautiful responsive son out of my mind.  And I will never stop fighting to get that back.  I cannot live with myself unless I know I have done everything I can to help him.  I have to move forward with this- now- I have been dragging my feet due to my fears, and our finances.  No more- this needs to happen.
It will likely take us 6 months to get an appointment with Dr. Usman- because there are many parents like me going through this exact same process right now.  Of course, like all of these practitioners, Dr. Usman does not take insurance.  Our initial evaluation, with travel, and lab tests (also likely not covered) will be a minimum of $2000 to 3000.  Minimum.  I am not going to let this stop me- and if it helps Nate then we will need to do it for Jack too.  So to the family and friends who have been asking- now is your chance to click the button and help us help Nate.  I am waving my white flag, and we thank you from the bottom of our hearts.

Monday, 3 February 2014

Mommy Crisis: How Can I Really Help My Kids???

This past week has been really rough on my spirit.  I am literally feeling lost- I don’t feel like I am heading in a good direction with either of the boys right now.  I have many times in the past, but little things from every intervention I have tried have stuck individually (different for each kid), leading to a hodgepodge of different supplements, therapies, medications and other interventions.  This would be ok if I felt like we were in a good place, but I don’t.

I’ll start with Jack.  He was off of Namenda (memantine) for nearly three weeks.  He has been having the early morning awakening (and by early I mean up for the day at 2:30am) at least 3 nights a week.  Another characteristic also reappeared, which is worse than the lack of sleep.  It’s one I never really talked about over here- because it upsets me so much.  Jack has started saying really mean, scary things.  “I will set our house on fire”, “you are going to die”.  NOW- I want to make clear that much of this is scripted, I in no way think that he would do or ever even seriously think of doing these things.  It’s not now that I am worried about though- he’s growing right?  So what happens when he’s bigger?  What if he starts to internalize these things?  It’s a huge fear.  It’s something that I think I had kind of blocked out from before we started Namenda.  I never connected that this stopped shortly after we started the study.  Finally on Friday, I called our pediatrician in desperation and asked her if she would prescribe the medication.  She had the script ready within the hour and called the compounding pharmacy ahead to let them know we were coming.   Namenda is not commercially available in the dose Jack was taking for the study- it’s too small.  I really didn’t think I was going to do this- but lack of sleep combined with fear for my child pushed me over the edge.  Bottom line, it’s a quick fix, but I don’t feel like I am doing the best thing for him in terms of the big picture. 

And then there’s Nathan.  If you recall, about 2 weeks ago I was about ready to burst because his speech was coming along beautifully.  At the time he was on antibiotics and he was on fluconazole.  He completed the course, and for maybe 10 days, things continued to go really well.  And then about a week ago, he stopped repeating as much.  He makes this cute face that would have you believing that he is just messing with you.  I don’t believe that to be true- I think he is unable to make the connections he was making a few weeks ago.  I could see him refusing to speak maybe once or twice just to be funny, but he is doing it all the time.  Some words are still coming- it’s not the same.  I would be lying if I said I wasn’t devastated by this change. 

So here’s the thing- who exactly am I supposed to ask about all of this?  Seriously, think about this.  If your child had a neurological condition, you would consult a neurologist, a gastrointestinal issue you would consult a GI doctor.  There just is no autism doctor out there.  Sure, every modality has “theories”- psychiatrists, psychologists, GI doctors, general practitioners, DAN doctors, neurologists, chiropractors, educators, homeopaths, OT’s, speech therapists.  just to name a few.  Most of the time their ideas do not mesh with each other’s.  So how is a parent to choose what is right?  The neurologist on Nate’s study doesn’t think he needs a mitochondrial cocktail.  The DAN doctor would disapprove of me giving my child a medication because it’s not treating the underlying issue in their eyes.  Other practitioners think ABA is THE answer.  Chiropractors believe people with autism need to have their brains “balanced”.  Who do I trust?  WHAT DO I DO NEXT??????

Oh and did I mention the other part of the autism community?  Adults with autism?  Who become furious with autism parents who are trying to “fix” their children.  Any of these interventions are at times considered inappropriate or offensive to this part of the community.  Even other autism parents are horrible to each other in this regard.  If a parent questions a new therapy that has worked for another child, they are judged for that, they are not doing enough, or are unwilling to accept "progress".  Or, if another parent does not believe in the therapy that a parent chooses they are judged for that.  And the sad part?  Most often there is no therapy that helps all of our kids.  So we are all right, and wrong.  Everyone is dealing with a similar menu of options, picking and choosing what they "think" is working best for their own child. 

Can autism therapies and treatments get any more confusing for parents who just want to do the right thing for their children?  We just want someone to tell us what our children need.  No one really knows.  There are many theories that are developing which I truly believe will lead to breakthroughs in the future.  They are not there yet.  There is not a “trusted” treatment among these cutting edge therapies. There is not an modality that a parent can choose that will not draw criticism from someone, somewhere. 

Once again, I would be fine with the criticism if I was confident in what I was doing.  I’m NOT.  Right now, I want someone to tell me what I should do for my children.  And when they say it, I want it to make perfect sense- I want all of the physiological theories to fall into place, and I want to see major improvement.  That is what I want.  And that is not an option.  I have to find a way to trust myself, or a practitioner.  I need to find direction.  I need help.  I am tired of floundering.