Big Montana Sky

We recently returned from our yearly trek with my best friend's family to Flathead Lake in the northwestern part of Montana.  It's a great trip that always ends too soon.  (which is why the trip becomes longer every year)

The menfolk garner great pleasure from building the best fires in the pit each night, after amazing, home cooked, themed dinners, great bottles of wine...and, well, even more wine after that.

Both of our families dream of building homes on the lake one day.  We've each joked about our stash of kitchen appliances and the errant piece of furniture that has, for now, been relegated to a storage area; labeled for years to come: 'Lake House.'

We rent a pontoon boat.  We rent sea doos.  We freeze our asses off on both, and don't really care because it's that much fun to ride on a massive lake even if you're wearing uggs, winter coats, gloves, hats and scarves.

 We take a day trip to Glacier National Park and go for a walk in the freezing rain.  Because it's THAT spectacular anyway.

We yell at our kids to not run on the dock.  (okay, so that part may be more me than anyone else)










We take a whole seven days to get into the groove of traveling with children---a point we kvetch about at night with hopes it takes zero days when the kids are older.

We go to bed too late and wake up too early.

We make friends with the locals and mean it when we tell them we hope to see them next year.

A little brother laments the big brother he wished would play with him the way the two sisters do...and his Mom hopes that their frank discussions help him realize how special their bond is nonetheless.

We shop for things we don't need, and realize we forgot to pack things we did need.

We get to reunite with middle school friends we haven't seen in a decade--who live nowhere near the neighborhood, but because it's Montana, a five hour drive seems like nothing.

We have the good fortune of a couple of grown up-only nights out because a good friend back home has family in the area that is happy to babysit!

And two old friends who've changed leaps and bounds since their high school days, can talk openly about how different their parenting styles are--how different their children are, and yet still know that it is worth it to spend this invaluable time with each other summer after summer.  And every once in awhile, they might just find themselves doubled over in laughter like they used to when their lives were a bit simpler, their stomachs a bit flatter, and their ability to stay up all night a bit more fine tuned.  But make no mistake...they've still go 'it!'

This Is As Controversial As I'll Get

I just have to get this off my chest and I am wondering how many of you out there feel the same as I do.

Clearly the vaccine issue has been at the heart of the what-causes-autism debate for quite a few years now.  When friends (and strangers) ask my take on whether or not vaccines cause autism, my answer has remained the same since before M was officially diagnosed.  That answer is that M showed signs of developmental delay from very early on, so in OUR case, I do not believe vaccinations were the sole cause of his autism.  However, I do wish that I had spread them out those first years rather than following the recommended plan because I do believe they very well could have damaged his immune system (and thus his neurological system) along the way.  M clearly has immune system deficiencies, and I think moderation is key for every single thing I put in his body especially when it comes to toxins.  The fact that he's likely had the herpes virus actively wreaking havoc on his system for years with the inability to shed it naturally is proof enough for me that my particular child has difficulty when it comes to processing foreign viruses and bacteria.  And please note that even though we have tried biomedical intervention, I am not nor have I ever been one to go singing its praise from the mountaintops in hopes that every other family with autism will also go down that path.  In fact, I have always been very honest with others who ask in saying that we have actually not seen any results from biomedical intervention, but that some of the supplementing does resonate with me because of the previously mentioned immune issues as well as lab results that have shown clear deficiencies in several areas.  I mention biomed here because of the point I'm about to get to...and the fact that naysayers seem to think those who believe vaxing causes autism are also quacks who shell out boatloads of money on biomedical interventions.

So to my point...I am sick and freaking tired of feeling the divide that has clearly made its way into the autism parent community.  I am not a person who cares to or thinks that I even can get into an intelligent debate with those who have made it their mission to memorize every statistic or study Paul Offit and others are involved in.    I am not interested in continuing to vilify Dr Andrew Wakefield or other scientists who believe vaccinations *may* have caused autistic enterocolitis (since that was Dr. Wakefield's claim, folks) or that they may damage some children.  Frankly, I barely have enough energy to remember to punctuate the sentences within this blog post as my four-year-old screams the phrase 'poop in your underpants!' at the top of his lungs over and over.

What I do know, though, is that I have some very dear friends that I have met along the way of this autism journey and they believe that vaccinations were directly involved in the decline of their children into autism.  I have listened to their heartfelt stories of typical development turning to seizures after a vaccination and thus a withdrawal from the rest of the world.  I have heard about gut biopsies revealing crazy-ass viruses present in their children's system. And I believe them...because they are parents on a blind journey just like me wondering how this could have happened to their child and why it is happening to so many others around them.

I have stopped reading the blogs of some very outspoken proponents of the people-who-think-vaccines-cause-autism-are-stupid camp.  Though these people may be bright and well educated, I no longer have patience to tolerate their penchant for talking down to those who believe differently.  If you can speak calmly and kindly about your opinions, that is one thing.  When it becomes clear that you think everyone who doesn't agree with you and 'science' is a fucking idiot, I'm out the door.

Stepping down now...

Blistless In California

Blistless or B-listless

Definition:

When a Blogger becomes listless or apathetic about posting. It is also indicative of what will happen to the Blogger's mailing list.

Yes, it would appear that this affliction has struck Mama Deb.  And my apologies, as the definition tells me that I have now likely passed on said affliction to you poor followers.  It's been slowly making its way into my life over the past year, but has really taken hold over the past couple of months.  I'm fairly certain my desire to not sound like a pathetic, skeptical, pessimistic, overly dramatic, loon may have a thing or two to do with it. (Though the ounce of optimistic, rational calm I have left keeps telling my other self that I'm strong enough, good enough, and doggone it, people like me!)  

I had good intentions of telling you just how fabulous our recent trip to Hawaii was and then it all sort of went to shit starting the night we got home and I was wallowing in my own sorrows too much to tell you something that might make you think I had been happy for Six.Whole.Days.  You know, cuz I got a rep to protect.

So I'll start with the crap and then end it on the high notes of our trip.  Sound good?  

We got home on a Thursday night around 11 pm.  Naturally we were all sorts of screwed up on our body clocks, so it was tough to wind down and go to bed.  B went with very little fight, but M started having this awful indigestion/burping the second we walked through our front door.  Interestingly, this indigestion had started a couple of weeks prior, but had magically disappeared during our vacation.  But we'll speculate more on that later...

I, being *slightly* anal retentive, was happy to stay up until 2 am unpacking and attempting to settle back into our home so that I would have less crap to look at when I awoke the next day.  Staying up would prove to not be in my favor as M started to get really uncomfortable within minutes of my head finally hitting my pillow and succumbing to sleep.  It finally became so bad for him that he was yelling and whining and I was worried that he would wake B up and then we'd really have ourselves some nighttime fun.  So I ended up transferring B into bed with the other half (who slept soundly through all of this, bless him)  and I took B's bed in the same room as M's.  M was up until 6 am burping and farting.  I had finally come to some sense and around 5 am gave him a pepcid ac, the only gas fighting medicine we had at the time.  (which is odd because, well, we have a lot of gas around our house, folks!)

So when we awoke at 10 am the next day, I was all sorts of out of whack.  That night was fine--not too much on the gas front--but Saturday, oh-dear-God, SATURDAY, it was so not good.  The poor kid was clearly uncomfortable for much of the day and by that night he was pacing and screaming in pain.  I'm talking the kind of screaming that could make a neighbor call the police and CPS on a family.  It was terrible to see him like that and to not know what in the heck was causing it or what to do.  And, you see, the thing about having a non-verbal autistic child is that you worry you are either a.) overreacting to every outburst or scream or, b.) not reacting enough.  This is what happened to the other half and I that night.  After M had paced for hours and the clock had reached 1 a.m., I (following previously mentioned option 'a') packed he and I a bag and got myself dressed in order to take him to the ER. The other half, however, (following option 'b') told me that I was 'a' and that the ER wouldn't be able to do anything to help him.  I finally relented, hit the kid up with some more pepcid,, and we all fell into a restless sleep around 2:30 a.m.  I'm going to fast-forward a bit to save you some more wordiness about discomfort, burping, and farting, so we'll skip ahead to Tuesday, a full three days after the peak of the indigestion.  By this point, the other half had been gone for 24 hours on a business trip and I could no longer watch M in such a state.  I took him to his doctor (after dropping B off at a friend's and packing yet another bag for a presumed trip to the ER) She agreed that I needed to bring him to the hospital for further testing.  Six hours later, we left after x-rays, an IV, a slew of blood tests, a catheter, and a 'high' enema.  (no, not just a 'low' enema, thank you very much)  The poor kid was so backed up that that day even his bladder had ended up blocked and took an entire hour to drain via catheter despite not having peed since about 11 hours earlier.  I'd like to note here that I am not a *complete* idiot and did realize that my child may have had some constipation issues.  However, I had been trying to manage them and he was going a slight bit ever couple of days.  If he hadn't gone at all for days I would have been more concerned about that than I was.  Lesson learned.

Now here's the kicker, though:  Two mornings later I awoke to find a voicemail on my phone that had been left the previous night at 12:30, while I slept.  The message was from an ER nurse who said that they were sorry to alarm me, however, one of M's lab cultures had just come back showing bacteria in his blood and they really needed me to bring him in for reevaluation.  AGH!  I spoke to the nurse who mentioned the word 'staph,' and away we went again to the ER for another seven hour visit.  It would turn out that we were one of the unlucky patients who had their lab sample contaminated by the naturally occurring staph flora we all have on the surface of our skin.  BUT, because he had started limping and they were worried it could be sepsis in his joint, they did a pelvic and hip x-ray while we were there that lead them to find a wicked crazy amount of gas still in his gut that they then gave him two hours worth of IV fluids and some zofran to treat.  Geez.  

On top of this (and because you, no doubt, are enraptured by my tale of my child's gas, poo and other bodily goings-on) we discovered that he has a condition called hyperphosphatemia.  Our doctor had asked that they test for this since M has also been hypocalcemic for years. (a thing that has just recently started to really concern me)  So it would seem that these two out-of-whack tests combined point to a possible parathyroid dysfunction which we will now see an endocrinologist for in a couple of months.  (Because that's how freaking long it takes to get into children's specialists, for those of y'all who aren't lucky enough to have to try to book these appointments)  We will also revisit the genetics department since it's been two years since we last did that and the ER doctor feels we need to continue to look into possible metabolic disorders for which testing may now be available.  (fingers crossed, though, that we don't find anything there...metabolic disorders can be s-c-a-r-y)

PHEW!  Are you still there?  Do I need to buy you a drink for still reading all this?  (Because I will, you know)

So instead of making my fingers ache anymore from typing, or make your eyes strain anymore from reading, I will leave you with some cheery photos from our lovely trip to Hawaii where both boys were incredible champs BOTH legs of the flight, and where having my mother-in-law there to help us proved to be the best decision we could have made!  I'm already ready to go back!

Because Facebook Doesn't Seem To Be The Right Audience...

I needed to write down a couple of hilarious things that B has said over the past couple of weeks.  The kid comes up with some downright doozies!

As I have mentioned before, the poor little guy has asked for a sister for eons now.  It breaks my heart that he thinks a sister would be more likely to talk and play with him.  He's also been saying to me that 'maybe when M is eight he will talk.  Do eight-year-olds have autism, Mom?'  But I digress.  This is about the funny stuff, not the sad stuff.

A couple of weeks ago he asked the other half, again, if he could have a sister.  Unfortunately, the other half's typical response is 'go ask your mother.'  So in he trotted to me as I was working on my laptop to ask for a sister.  When I told him it just wasn't that simple he said, 'Yes, it is!  Just go to sister.com!'  Ahhh...he is too much.

The next story I heard secondhand from the other half.  A little background info:  I, with the mouth only the daughter of a sailor could have, have been making great attempts to say other words beside the four-letter ones that generally are so satisfying to say.  Instead of saying 'shit' I have started saying 'shish kabob.' And instead of exclaiming the word that starts with an 'f' and rhymes with 'duck,' I have been exclaiming (with great frequency, I now realize) 'Jay-sus!'  Now, I was raised a fine Catholic girl.  I realize taking the Lord's name in vain is frowned upon (even if I do put a slightly different inflection on that first syllable), but I figure that the Lord thinks it's better to exclaim his name than to curse, right?  Well...apparently Mr. B was frustrated the other day and copied my exclamation.  The other half looked at him and said, 'What did you say?  That's not a nice thing for little boy's to go around yelling.'  Without missing a beat, B looked at him and said, 'I said 'cheese sauce,' Dad!'
So now I'm going to be saying 'cheese sauce' instead of 'Jay-sus' when I'm frustrated.
This is particularly funny to the other half and I because I have always been told of a story of when he was a little boy and angrily yelled 'God!' in front of his Dad.  When his Dad asked him to repeat what he'd said, he told him, 'I said 'Hod!'  I guess the apple doesn't fall far from the tree, but B beats his Dad on creativity!

Autism: A Full Body Disorder

I posted this on Hopeful Parents earlier this month and neglected to also post it here.  Sorry I have been MIA.  I will follow up with a verbal spewing of the not-so-fun events of the past several weeks.  Of course, there were those six magical days in Hawaii scattered in there, too, and I promise to not forget the niceness of that!

We are in the midst of a burst of long awaited discovery.  For the past three years I have watched my son regress before my eyes, knowing in my gut that something was causing it above and beyond the transition of a cross-country move.  Unfortunately, it takes a lot of tests and the right doctor to help you get to that discovery; but I feel fortunate that one doctor's departure from a clinic was finally the door that opened for us to be able to see the founder of that clinic instead.  

Our current developmental pediatrician has been described by people I have met as 'amazing,' 'brilliant,' and 'talented.'  After only two appointments with her, I also gladly ascribe those terms to her.  She listened intently and came up with three new avenues in which to look for culprits that have attacked my son's body.  The first was a lyme disease challenge test.  There is no definitive test for lyme, but the hope is that by treating a person as though they are infected with the lyme parasite, you have a better chance at stirring up any potential bugs in the body and then testing for them.  Of the three components of the test, only one came back as a very big positive: the measurement of my son's natural killer cells. He has an extraordinarily low number of these important cells which can also be associated with chronic fatigue syndrome.  M has also been hypocalcemic for three years despite supplementing with calcium.  We have never chelated, the procedure you most often hear about in conjunction with hypocalcemia.  The googling I have done on this condition worries me greatly, but this doctor feels that it is likely a direct effect of years of viruses taking their toll on his sytem.  I can only hope that she is correct.

We also tested his blood titers for various viruses.  His labwork came back showing that he actively has the herpes virus in his system.  Many of us will have this virus at some point, but in kids with compromised immune systems, it's even more difficult to shed and can cause swelling on the brain.  Our current course of action is a month-long (possibly longer) trial of the antiviral medicine, valtrex.  While the side effects of this medicine (along with quite a few homeopathic supports to his immune system) are tough, we have seen a calmness and clarity that hasn't been there in quite some time.  The poor boy is burpy and feverish at times, but in the midst of that, he answered my plea to 'please tell Mommy where it hurts' by fervently patting his head and his tummy repeatedly.  I can't quite remember the last time he was able to answer me...even in a non-verbal way.  We have also seen a HUGE decrease in his desire to chew on inappropriate items or go into our kitchen pantry or refrigerator.  This had become a great source of stress for me, so I am extremely grateful for this change.

Lastly, we are going to see a more specialized pediatric neurologist in late July.  A year ago a very basic MRI and EEG were performed to see if M had Landau Kleffner syndrome.  The only thing that came out of the tests was a finding of a rare, right brain wave spike in his right frontal lobe.  This spike is consistent in children with autism, and puts him at a higher risk of having seizures one day.  Though that neurologist closed the book on the possibility of Landau Kleffner, my husband and I always felt suspicious that there was more to things than what the tests revealed.  Our doctor has two other patients that present similarly to M in their late regression, fairly clean, initial MRIs and EEGs, and yet one did go on to see a specialist who in fact found that the boy WAS having sub-clinical seizures that had been harder to detect with a basic EEG.  That boy is now following Landau Kleffner protocol of anti-seizure medication and prednisone and is apparently making awesome gains.  Though the thought of putting M on anti-seizures meds is scary to me (I have a niece who has been treated-and, I believe, harmed-with quite a few of these medications) the thought of him potentially having seizures that have gone untreated for such a long time is even more frightening.

We've still got a long road ahead of us.  Not only will he need immune support for some time to come (if not forever), but I still feel there may be more health discoveries to be made.  I am hopeful that my little man will feel more alert, less uncomfortable, and be the happy-go-lucky boy I once knew again.  I am not trying to 'cure' his autism, but I am going to do everything in my power to make sure his body is as healthy as it can be. 

Hawaii

I wanted to thank each of you for taking the time to share your advice, personal accounts, and encouragement that it would be okay for me to take a trip without M.

I sent many of your comments to the other half--I thought it was very important for him to read so many viewpoints that differed from his.

It has been decided that M will come with us.  I know he will have an amazing time once we get there and am hoping for a happy surprise on the long flight over.  The good news is that my wonderful mother-in-law will be coming with us to help with both boys.  This may be even better than the original plan of just taking B with us as now we will have the opportunity to get away occasionally without either of the kids!  I see fruity drinks with umbrellas and lots of time lounging by the pool in my future and I cannot wait!  The weather has been awful here for weeks, so this trip can't come soon enough.

Thanks again.  I so appreciate those who take time to read what I write, but even more so for those who are willing to share their opinions with me!

Decisions

I posted the following at Hopeful Parents yesterday.  Nothing fancy, but something I could really use your input on as we try to make this tough decision!

Instead of writing something poignant (ha!) or witty (right!), I could use a little help from you Hopeful Parents out there.

The other half is getting to go to Hawaii for business next month and we had planned on the boys and I meeting him at the end of his conference for a family vacation.  We were fortunate to go to Hawaii just over a year ago as well.  It was a lovely trip, aside from the awful-ness that was trying to fly home.  M did pretty well, all in all, but in truth, he is a different child today than he was just 13 months ago.  

I thought I could handle the 5 1/2 hour flight to Oahu by myself, but after flying back home to visit relatives last week, I absolutely know that I would not be able to do that with two young children successfully.  M's sensory issues have multiplied greatly and his ability to not lash out at me (verbally and often with pinching and grabbing) has gone right out the window.  The flights to and from our visit weren't the worst flights we've ever taken, but they were also far from the best, and they most definitely filled me with more consistent stress because I was aware that he was on the verge of a (loud) tantrum at almost every moment of the flight.  

My amazing mother-in-law has offered to fly with us to Hawaii.  This would be wonderful on several accounts.  Not only would she be an extra set of hands at the airport and on the plane (allowing me to actually get out of my seat to use the bathroom, which you know is going to need to happen on a flight that long!), she would allow the other half and I to take our own time, free of the kids, if we wanted it.

But here's where I need your help...she has also offered to fly to our home in California to stay with M while the other half, my typical four-year-old, and I go to Hawaii by ourselves.  The other half won't hear of it, but I have to admit that I think it is a really nice idea.  First off, we have two other domestic trips planned this year that M will absolutely be included in.  And second, doesn't B, my typically developing child, deserve a vacation where he can go places we normally wouldn't be able to go without the constant worry that it could end at any moment based on his brother's needs?   And as guilty as it makes me feel to admit it, I could use a 'normal' vacation as well.  It would be great to eat out at a restaurant, leisurely, without worrying that M will yell, or worse, try to grab food off of another diner's plate.  (yep, that happened to us the last time we went to Hawaii)  

It is hard to imagine how looking at photos after a trip like this--with one very important family member missing--will make us feel.  Just thinking about it certainly stirs up all sorts of emotions in me.  And I know that M adores the sunshine and being at a hotel.  But would I be the worst parent in the world if I actually did take my mother-in-law up on her offer?  Have YOU ever made this sort of decision?  I would love to hear your personal thoughts and stories.