Wednesday, 30 May 2012

Trigger Happy

Oops, hit publish instead of save draft.  Good thing I got lucky with spelling.  Not much else to say, but was going to post some pictures of Nate.

strawberry outing 

 crib pile

family room pile

The last one is in the car while we are waiting in line to pick up Mr. Jack. Natey is grinning because I have just put on Michael Jackson which is his absolute favorite.  He loves "Rock With You", although he will tolerate "Don't Stop Till You Get Enough" under duress.

Sent off the boys' hair this morning for heavy metals- involved cutting locks with a flashlight while they were sleeping and placing it on a paper scale until it tipped.  very technical procedure.  Ordered the 3 new supplements- 90 bucks.  One month supply.  And going for labs on Saturday.  Progress......

Baby Steps.....

Ahhhh Nathan.....

My little cutie.  He is so much fun to watch, even when he is somewhat locked in his own world.  He has made up many little games for himself, keeps himself quite entertained most of the time.  We went strawberry picking about 2 weeks ago (well John and I picked them anyway).  Jack spent the whole time dodging bees and other flying insects, and Nathan spent the time twirling straw (sound familiar?).  But boy was he happy.  Our little runner didn't even try to make any mad dashes, just hung out with us, twirling away.  We were able to get quite a few berries, enough for a pie and 5 jars of jam, and yes I am proud of my domestic prowess thank you very much!

He has started doing some things that he used to do about a year ago.  He used to turn John's arm over, (palm up) and then fill it with everything he could gather...hats, shoes, socks, toys.  The OT thinks it is his large version of container play.  Well, he has found an even larger container, his crib.  Every night when I take him in for bed, he starts filling the crib.  His shoes, dirty clothes, books, toys, the other night he was trying like anything to put his laundry hamper in.  Hilarious to watch by the way.  I subtly take out as much as I can, because he gets really mad if he notices.  Then the other night, he discovered an even bigger canvas, the family room rug.  He was pulling all of the toys over, all of our shoes, John's travel mug, newspapers, you name it.  Then he would flop down in the middle of it, spread it back out and then pile it up again.  This went on for a good 40 minutes.  Yesterday afternoon while I was working on some cases downstairs, he decided my chair would be a good receptacle.  I found myself flooded with John's slippers, the remotes, eventually he tried to pile the beanbag chair on.  Is this an antiquated form of the "line things up game" that children with autism are notorious for?  Probably.  It's stinking cute!

When we saw Dr. Brenner last week, he wrote a script to more than double his B12 injection dosage- but we have a full month's supply of the old dosage to get through first, stuff's expensive.  While we were sitting there, he suggested I try just doubling his injections up a couple times to see if we see a difference.  So I did that both Monday and today, but made sure I told no one.  Yesterday at school he said "open" and "ball".  He said "ball" this morning for the sitter.  When the therapist came to the house today to do his home visit, he did amazing, and sat there mumbling to himself while he was trying to work the puzzles, shape sorters, etc.  He interacted with the therapist, playing a tickle game with her while hiding behind me.  And when she called "Nathan come here" so that he would return to his "work station", he ran in the opposite direction in true 2 year old fashion.  

Friday, 25 May 2012

The Mothership

The end of this week has brought a flurry of activity.  Yesterday was one of those days where, as a working mom, I really just wanted to laugh at myself.  Who the hell do I think I am?  I can't do all of this?!!  I was running so fast my head was spinning and feeling like I was doing poorly in everything I did.  Two urgent cases at work for kids less than 2 yrs old (think lung transplants), a work phone that wasn't functioning (seriously, I gave my cell phone number to several providers...that is going to come back to bite me in the a__, despite the fact that I told them that they were to use that number for the day, then destroy it, ha), Jack's end of year parent-teacher conference, no school for Jack, Nate's school, oh and getting all of our paperwork together for our BIG appointment today.  I went to parent-teacher conferences in SWEATPANTS and glasses!!!  I am awesome!  The good news, however, is that my big boy has been doing much better.  His handwriting and drawing have improved significantly, as has his attention span at school.  He had a high school volunteer with him for about half of this school year, he really needs that extra attention to attend to tasks.  His teacher and I discussed that he is intelligent and has the needed skills, it is all the "noise" in his head that gets in the way.  Crustaceans mainly, lol.  She said that while she is not allowed to recommend it, a private aide for school would be beneficial.  She can't recommend it, I can't afford it.  Next year will be crucial for will be a true test for him to be in full day mainstream school.  Trying to prepare myself mentally for this.

Today both John and I took the day off of work (our coworkers are loving us for scheduling these appointments on warm, sunny Fridays) to go meet with Dr. Brenner.  The sink spitter.  For me, it was an absolutely amazing morning.  Let me tell you something, it is appalling that the medical community is not doing more constructive work for people affected by autism, it literally turns my stomach to think about it.  The "mainstream" way of approaching autism involves behavioral therapies, and OT, speech, etc.  These are effective tools in assisting these kids, I am not disputing this.  But who is dealing with the underlying cause of the issues???  All the therapies can do is help the kids function better while living with the issues.  Why should they have to????   Every physician that I have encountered that does not follow the mainstream approach has stumbled into "biomedical" intervention because of personal experience.  A child or grandchild afflicted with the issue, or a friend, or in this doctor's case, a patient when he was a very young doctor.  He has been a licensed pediatrician for 53 years and told us the story of the first patient he encountered that benefited from the interventions we were discussing.  This stuff is all "underground", ie, not accepted by the medical community at large.  I feel like the only reason my children will get this help is because they have very motivated parents who are willing to search and search.  Dr. Brenner's first question was "how did you find me".  It is a legitimate question, he is definitely off the beaten path.  He is in Randallstown for the local people reading this, and NOT in a nice area. This office is not posh, he is not a "private" physician by any stretch of the imagination.  Most doctors that address the issues Dr. Brenner does charge about $700 just for an initial evaluation.  And they do not accept all.  I found myself filling out questionnaires designed for medicaid recipients, and filling out a form asking who my medicaid MCO was.  After a minute I realized they weren't asking who I worked for.  The office reeks of smoke, secretary, NOT NICE, and had a pack of menthols on her desk.  Awesome.

But once we got in the back, none of that was relevant.  Dr. Brenner is great.  He is gentle with the kids, you can tell he is constantly assessing their behaviors.  He asked us detailed questions about the boys' developmental histories.  He is the FIRST provider to look me in the eye and write it down when I told him that Jack screamed for 24 hours straight after his hepatitis B vaccine at 1 day old.  He specifically asked about Nathan's regression, asked about typical characteristics that I didn't even realize that providers acknowledge (monotonous sounds, sensory habits, sleep, hyperactivity).  He used finger quotations when he spoke of the "medical community" and the "vaccine myth" (you know that one where vaccines cause or contribute to autism).  His vaccine myth, however, is the myth that they are safe for all kids.  He looked at Nate's stool assessment, and basically said, tsk, tsk.  I asked him what he saw, he said, "there are those eosinophils again".  I didn't even notice, I only noticed the yeast counts.  Eosinophils are the white blood cells that mediate allergic immune reactions.  Basically, indicates food intolerance.  This is not shocking, his blood showed us he has sensitivities right? This is just confirming that further, but we still don't know why he developed this inability to process certain foods.  He told me about an experiment that has been done with rats, it creates this same reaction in their guts that Nate is displaying.  Guess what they inject them with?  Aluminum.  Guess what replaced mercury in vaccines?  BINGO!  But of course this is not a problem to the "medical community" right?  Why would kids who couldn't process one heavy metal be unable to process another heavy metal?  Blah.  So he sent us home with hair tests to check for heavy metals.  Apparently, you can see it in your kid's hair.  We are also sending urine for organic acids, doing bloodwork to check for other issues, and doing a 24 hour urine on Jack.  Seriously, I am so glad I am a nurse.  So Glad.

The interventions....
Remember how I said I read about curcumin (common spice) being used?  Wants us to start giving the boys that.  He is increasing Nate's B12 injection dose and plans to start Jack on it too eventually.  We are adding something called P5P, and folinic acid for Nathan.  Ready for this one?  Epsom salt baths.  I have heard it numerous times in the community and seen it in the literature, and he confirmed that it has seemed to help lots of kids with autism.  Love the interventions that can't hurt, might help.  They are my favorites.
Here is a basic explanation of the purpose of the epsom salts in autism:

As it turns out, Epsom salts are also a nice remedy for some children on the Autism spectrum. Epsom salt is magnesium sulfate. Magnesium is a mineral that is very relaxing to the body. Many people, particularly in the United States, have a deficiency in magnesium levels. That can contribute to sleeping problems, behavioral issues, cramping muscles and a tendency to just not feel well over all. Magnesium can be absorbed and can cause relaxation. If it is swallowed in bath water it can be beneficial for kids with constipation. The other component to Epsom salt is sulfate. Sulfate is commonly deficient in children with Autism. We can measure serum sulfate levels which most of the time are low. The biochemistry with kids on the Autism spectrum is quite unique and there are various deficits that happen where the sulfur chemistry becomes depleted. This is important because sulfur chemistry is deeply connected to detoxification. The detoxification system in our body is critical to rid the body of toxins and for many kids we know that toxicity is a big problem. Simply adding Epsom salts to your child’s bath can be a nice remedy not only to add magnesium but to add extra sulfate to their system as well.

He also prescribed naltrexone, which puzzled me a bit initially.  For my nurse friends, it is from the same drug family as narcan.  Oncology nurses give this A LOT to patients requiring high doses of pain medications.  You walk in to check on them and they are unresponsive, breathing, you know, like 6 times a minute.  Not good.  Narcan blocks opioid receptors, and bam, they wake up.  I would not recommend standing too close to a patient after administering this, you're likely to get a fist in the face.  So why would I give this medication to my children, who are on no narcotics?  Here is what I found:
"It is one medication that according to Dr. William Shaw Ph.D should be added to the anti-yeast and free of casein and gluten diet and Nystatin protocol for children with autism. Naltrexone blocks opioids in the brain. The opioids from milk and wheat may slow the brain down."

Ahhhhh.....this makes so much sense to me.  If this is not effecting the boys, the drug will do absolutely nothing...however, if the diet is not adequate, if there is still yeast, if there is some other food product creating this effect, it may help greatly.

Can you tell I was a biochemistry major in college?  I hate that I am reading about this stuff because my kids need it, but man is it fascinating!!!!  I was always bitter that I took organic chemistry, 3 semesters of calculus based physics, calculus, genetics, and needed none of it for my eventual career.  Full circle people.  The more I live my life, the more I realize that absolutely everything I have done has served some purpose down the line.  I just may not see that purpose right away.
So these are the things to start with, before the lab results.  I am overwhelmed.  Luckily, I am also not allowed to do all of these things simultaneously....each change needs at least a week, so we can measure any effects.  So....tonight my kids will get an epsom salt bath, and in the next few days some lab work.  Then I will cut a piece of their hair and send it off, and we will go from there.  One step at a time.  And breathe.  I am just so happy to have a plan.  So freaking happy!  Yeah Dr. Brenner!!!!!

Tuesday, 22 May 2012


Nathan is having a great week so far.....more eye contact, more focus, and he's very vocal for him.  Lots of babbling.  He is using his PECS (picture exchange communication system) pretty effectively right now.  We are only using it for food items (since this is the most important thing in the world to him) and only giving him 2 choices at a time, for the most part.  So on his little "tablet" I velcro a picture of his bread, and a picture of his cup.  I hand it to him, he takes off the item he wants and hands it to me.  Then I say the name of the item.  The idea is that he understand that he has to give something to get what he wants (communicate).  By saying the name of the item consistently, hopefully he will grasp that not everything is called "more", and he may begin to learn some object names.  We have heard him use the "b" sound multiple times when handing me the picture of the bread, and we both swear he said juice last night.  He was standing in his crib screaming "go" this morning.  Not a new word, but he was using it in a new way, so I'll take it.

It has to be so frustrating to be Nathan.  He comprehends so much, but is unable to tell us most of it.  And it's starting to show.  With his more "with it" state have come multiple tantrums.  He is two, first and foremost. But he has been showing aggression, both towards me, and towards Jack.  And I am worried.  He is strong now, but I really need to nip this behavior in the bud because if his communication doesn't improve greatly, the frustration is surely just going to build as he grows (and gets even stronger).  Every time Jack tries to hug me, or climb on my lap, Nathan hits him.  I tell him no, I grab his hand to stop it.  His response, he grabs my hand right back and just screams at me.  At least he's imitating me I guess.   If his cup doesn't hold the beverage he "likes" he gets very upset.  He threw his cup at me approximately 10 times last night, and by throw I mean hurled.  He has a good arm.  Every time I took it away he had a tantrum.....every time I gave it back he tried a sip, yelled "more" and the throwing would begin again.  He also does this thing where he walks directly to you, turns the palm of your hand upright and as carefully as can be, places the cup in your hand and says "more".  This is his most direct communication.....I always want to honor it, but the beverage that he does not like is the one with his supplements in it.  He has to drink it.  So when I say "no" he screams and tries to throw yet again.  The force with which he kicks during diaper and clothing changes is shocking and very hard to control.  I have taken to holding his legs down and telling him no each time, but either he is not comprehending what I am saying or he is just a really strong, pissed off two year old.  Sometimes it's hard to tell the difference, ha.

This morning we were all in bed and Nathan was ticked off that Jack was there.  He was trying to kick him in the face, slap him, etc.  Jack does not have an aggressive bone in his body, I am worried that Nathan might really beat him up in the future.  So I separated them, and Nate was standing up and looking out the window by our bed.  I thought he was calming down, but then he began body slamming me, but with his head.  He is always sensory seeking and especially with his head.....likes to fall head first, likes to bang his head, etc.  I told him no very firmly and thought he got it because he stood up again and really did appear to be looking out the window.  Nope.  I closed my eyes just for a minute and bam!  Down he came, only this time his hard noggin hit me directly in the side of the nose.  Mommy has a whopper of a head ache right now.  I am not sure what to do about this.  With Jack, we had the book "Hands are not for Hitting", and it was a very effective tool.  And he was also able to express himself in other ways.  With Nathan.....I am just at a loss.  I know the behaviors have to stop, but I need to find him an alternative outlet or something.  In the meantime, I am hoping I am not going to end up with a big bruise on my face....that kid's head really hurt!

Friday, 18 May 2012

We're Off to See the Wizard.....

Do you remember Dorothy's disappointment when she finally makes it to Oz, finds the wizard, pulls back the curtain and realizes the wizard is nothing more than a mere mortal?  That would describe our day at Kennedy Krieger.  In a nutshell, we learned nothing new, and were offered nothing useful.  It's ok, I know this is going to happen lots of times before we find some answers for Natey, it's just a bit frustrating.  First thing, they asked us to have Nathan fast prior to his 8:30 blood draw.  Ever made a highly routinized child not eat his breakfast? It's not a pretty picture.  Still, it didn't bother me, as it was for a good cause.  This was the blood draw that would look for signs of oxidative stress, and was specifically for children with regressive autism.  They won't say it, but they are looking at stress on the body from things like...gasp....vaccines!  You know, those things they swear up and down are safe safe safe?  In any case, we brought our cranky little boy in, and to their credit, they took us right up for the blood draw.  But.....the phlebotomist sucked!  I try very hard not to be judgmental of other health professionals, and honestly, I have always been in awe of how effortlessly phlebotomists can get blood, especially from children.  They really know their landmarks and most of them don't even seem like they need to "feel" the vein.  Yeah, this woman didn't have that all.  She kept dropping the needle on his arm before she started and then when she missed his vein she just sat there motionless, neither giving up or "fishing" (which I hate but is occasionally necessary).  And then that was it.  She wouldn't try again.  So we starved our kid, both took the day off of work, and drove an hour to their Greenspring location and already, 5 minutes in, he is going to be excluded from one of the two studies we came for?  What happened to grabbing a different phlebotomist?  Or taking a breather and then trying again?  Or heat packs?  I am not trying to be cruel to Nathan, not saying, stick him til it hurts, but COME ON.  I mean, they put IV's in preemies!  Heck, I drew blood from one of my oncology patients' THUMBS one time!  If she missed twice, then ok, but let's make an effort here.  I am mad at myself for not asserting my parental authority a bit more, but what was I going to say?  Again!  Come on lady- stick my kid!  And they couldn't try later in the day since by then he had eaten.

After the blood draw came the one test that both John and I found extremely interesting...and it actually did yield some reassuring data.  Basically, Nate was put in a high chair in front of a television and shown a series of images, one would pop up on the screen then the other, they would move, disappear, etc.  Some of these images were also faces.  They had a machine that was tracking his eye movements, to see if he would shift attention from the first object to the second object, to see what area of the face he was studying, to show if he had a preference of one face over another (familiar one vs novel one).  At the end of the test she was able to show us his eye movements on the computer screen.  He did shift his attention to the second objects, then shift back to the first object.  He did look directly at the faces, and always at the mouth.  The tester said this was an excellent indicator that he truly is trying to figure out speech and language.  He also would favor a novel face over a familiar one.  These are all appropriate reactions.  Something you really never think about, but fascinating.

The next step was the "typical" developmental assessment portion.  This lasted approximately two and a half hours.  As you can imagine, most of this was play based, as we are talking about a two year old here.  They only tested comprehension, receptive language today.  No expressive language, that would be later on in this second study.  There was nothing really new in the findings, he is severely delayed, think receptive language of a 15 month old.  On an emotional level, it never gets easier to watch your child struggle, or, in the eyes of the evaluator, fail.  This was the first time John has really had to sit through the full battery of tests with one of the boys.  Mom and dad are not really allowed to "help" or encourage Nathan much during the evaluation.  I could viscerally feel John struggling not to scream "wait he can do that!" during certain portions of the testing.  At one point, he asked me why I was so quiet (we all know I'm NEVER quiet right? :)).  I have found that it's better for me to just say nothing at all....because I might let out a primal scream if I open my mouth.  It's so damned frustrating to watch!  That being said, there were moments today when I was really proud of Nathan....some of his ABA stuff is really paying off.  He worked his puzzle completely independently, followed direction (under duress) much more effectively than he ever has in the past.  There were certain toys that he knew exactly what to do with and I would have to say this is the first time I have ever seen him do it without any prompting.  That was really encouraging.  Do you remember way back to my first post where I talked about Nathan just giving up after trying to pull his cup out of the diaper bag?  How he never even tried to ask for help?  I use that a baseline and am constantly assessing his communication based on how he "asks" for his cup.  Hilarious during this assessment.  The boy was obsessed.  He STILL doesn't say cup....but he does say "more".  And every time we snuck the cup away from him he would run back and forth between John and me asking for more.  Even if we distracted him for a few minutes, he would go right back to it when he remembered.  Eventually I asked the evaluator to move my bag out of the was the only way to make sure he understood the cup was "off the table".  Tenacious little guy and I am thrilled.  For me, it's tangible progress.

Once the evaluation portion was done, they calculated Nate's results and determined if he was eligible for this second study.  He was.  Then they "found out" which arm he was randomized to.  One arm involves school, at the Greenspring location, 4 days a week 9-11am for 5 months starting in late June plus daytime parent classes.  The other arm was parent classes at night.  We knew we were only going to be able to participate if we were randomized to the second arm.....and we weren't.  We were placed in the classroom group.  I should be thrilled.  But there is no physical way that this can happen.  His current ABA is 8:30 to 10:15 5 days a week, so I would have to switch him to this program for the next 5 months, then switch him back to his other program in November, and then when he turns three in December he gets moved to another program.  Too many transitions for Nate.  Not to mention the hour commute each way for a two year old, and the fact that, oh yeah, I have another child, and a full-time job.  I just don't see how this can happen.  I didn't give them a definitive no yet, but it's pretty much inevitable.  I am bummed.

So we came out technically no better than when we went in.  At least I know where the facility is?  And there are several other studies that haven't started recruiting subjects yet.  They have our permission to contact us for these.  I guess if nothing else, they know who we are, and they know we are willing to do anything within our power for our son.  So hopefully we'll get some calls....sometimes, what you think is your goal is not it at all.  Maybe this day served a far greater purpose....maybe there is something much bigger coming in the future that  we will now be privy to because of our actions today.  Fingers crossed!

Monday, 14 May 2012

Natey stuff

Some video of Nate playing one of his "games", which basically consists of running in a pattern and laughing hysterically.  In the second one, he also shows some of the self-stimulating "stiffening" that I have mentioned in the past, as well as the other sound that was actually our first red flag that something was going on.  Mainly b/c of our experiences with Jack, it's a repetitive sound that he makes with his tongue, see if you hear it (it was concerning because it started REPLACING babble and language).  I am putting this on here so I have it to look back on when it's no longer relevant!  Oh, and of course, repetitive behaviors or not, the kiddo is just stinking cute!!!
Note:  if your receive my blog via email notification, you will need to go to the actual blog to view the videos in most cases.  I suggest you do will see a huge difference between the first set and the second set of videos.

I have also posted a few early videos of Nathan below.  It almost breaks my heart to watch them....but I want THIS documented as well.  When we go for our evaluations, if they want to see what I mean by "changes", here it will be, for them to see without question.  And it's nice to remember the time before the worry set it, I won't deny it.  I am so so glad we took these videos, especially since it was of no special occasion, just every day shenanigans.  The first one is from March of 2011, so Nate was 14 months old.  The second is from December 2010, he was 1 year old.  Note the eye contact, the sustained attention, the conversant babble.  Kills me

Sunday, 13 May 2012

Happy Mother's Day

Yeah, I wasn't gonna let this day pass without saying Happy Mother's Day to everyone.  I hope you all had a great day!  I have to post my favorite mommy "poem" feels especially poignant after the events of this past year (and TRUE)

Before I was a Mom...

I made and ate hot meals. I had unstained clothing. I had quiet conversations on the phone.

Before I was a Mom... I slept as late as I wanted and never worried about how late I got into bed. I brushed my hair and my teeth everyday.

Before I was a Mom... I cleaned my house each day. I never tripped over toys or forgot words to lullabies.

Before I was a Mom... I didn't worry whether or not my plants were poisonous. I never thought about Immunizations.

Before I was a Mom... I had never been puked on, pooped on, spit on, chewed on, peed on or pinched by tiny fingers. I had complete control of my mind, my thoughts, and my body. I slept all night.

Before I was a Mom... I never held down a screaming child so that doctors could do tests or give shots. I never looked into teary eyes and cried. I never got gloriously happy over a simple grin. I never sat up late hours at night watching a baby sleep.

Before I was a Mom... I never held a sleeping baby just because I didn't want to put it down. I never felt my heart break into a million pieces when I couldn't stop the hurt. I never knew that something so small could affect my life so much. I never knew that I could love someone so much. I never knew I would love being a Mom.

Before I was a Mom... I didn't know the feeling of having my heart outside my body. I didn't know how special it could feel to feed a hungry baby. I didn't know that bond between a mother and her child. I didn't know that something so small could make me feel so important.

Before I was a Mom... I had never gotten up in the middle of the night every 10 minutes to make sure all was okay. I had never known the warmth, the joy, the love, the heartache, the wonderment, or the satisfaction of being a Mom. I didn't know I was capable of feeling so much before I was a Mom.

We have continued to nurse our sick kids over the weekend, and unfortunately mommy joined their ranks.  I am on the mend, and Jack seems fine.  Poor Natey.....he is having a really rough time with augmentin.  He is barely eating and has the worst diaper rash EVER.  His bum is mommy's new project (please see poem above).  I just can't stand seeing my poor little guy in pain....he is pretty tough in general, so I know this must really hurt!  I am going to ask if we can switch antibiotics tomorrow....there has to be something less toxic.  Not to mention the fact that I am walking around with white stains all over everything I own right now (feels like baby days all over again) from the numerous unsuccessful attempts to administer the medication.  The kid is a champion spitter.  I mean, I have resorted to the torture method of  lying him down with hands behind mommy's knees, and blowing in his face.  Result= antibiotics in mommy's face.  I really wish I could just drop an NG tube and get it over with.  So Mother's Day has been subdued to say the least....we were supposed to have brunch with my family and my mother-in-law, but unfortunately we had to cancel.  But I did get some good uninterrupted time with the kiddos....I am working on having Jack "write" all of his thank you notes from his birthday and have been pleasantly surprised by how much easier it is than even doing his valentines were.  A lot of progress in a short time.  I did plant a new rose bush as well today, something I can look at each day and think of my children. 

I am getting anxious for Nate's appointment a Kennedy Krieger this Friday, and then his evaluation with the new specialist the Friday after.  Just a lot going on over here.  Nate has also qualified for a study with NIH....the scientist in me is pretty fascinated by the subject, but I need to decide if it's advantageous to him to participate.  The study criteria is of course based on diagnosis, but also on head circumference, and whether there was rapid head growth early in life (more than normal I should add since all babies have big heads).  OK, if anyone who has known my husband for a long time is reading this, they are laughing right now.  It is a family joke that he has a large noggin.  From the day that we told people we were pregnant with Jack he was nicknamed "little big head".  Self fulfilling prophecy....Nate's head circumference is in the 99th percentile.  Ouch, right?  The theory is that the brain of an autistic child actually grows more rapidly than that of a typical child.  Thus far, studies have shown significant growth in cerebral volumes, but not cerebellar.  I have no idea what this means, but it's interesting for sure.  

So, why not right?  I mean NIH is pretty close....oh wait.  There of course is a catch.  Even though the study is through NIH, the partnering facility, which is conducting all of the field work, is Cleveland Clinic.  Travel for studies was not on our agenda.  They will actually pay for our lodging, I just have to decide if it's worthwhile to go, stress Nate out, miss work, miss school, etc.  It sounds like there would be genetic testing as well, as they asked if his father and I would be available for blood work. They would provide us with a detailed report after the full day of testing as well as treatment recommendations.  Yeah, I am convincing myself to go right now just in writing this.  I just hope that someone we are seeing or about to see has something new and effective to offer Natey.  We need some progress, the whole family does.  

Wednesday, 9 May 2012

Home Sweet Home

Mama told me there'd be days like I have said more than once, she really needed to be more specific.  :)  We woke up this morning to find our little Natey had transformed into a wet dishrag over night.  He refused all food, was just lying on his bean bag staring off into space, and eventually he spiked a fever.  Coincidentally, he finished his antibiotics late last week....yeah, not coincidentally at all.  I was already taking Jack to the doctor for a GI issue, so I called and made it a two-fer.  Long story short....both boys now have strep...Jack's happens to be GI, Nate's remains in his throat.  I remain suspicious about chronic infection with Nate...we shall see.  So we have upgraded our antibiotic, hopefully that will do the trick.  In the meantime, more nystatin.  Bugger.

Luckily, I was at home working and able to take them to the pediatrician myself.  Our home has many functions these home, day care center, my name a few.  Some days (days like today perhaps), in some ways, I am wishing for the office away from home, the "peace" of not knowing every single time my children cry or misbehave.  But honestly, working from home is the biggest blessing for us right now.  Between the in-home therapies I can "pop in" on, and the doctor's appointments I can run the boys to, being here during the day lets me stay involved, and even when I have to be a spectator in their daily activities, at least I can see them.  We can do lunch, if one of them falls and hurts themselves, I can kiss their boo boos.  These little privileges more than make up for the few disadvantages.  Such as the recorder that my son is currently incessantly blowing in my ear, ha.  There, just put it up high....mean mommy.  I would say that I feel torn between the two worlds of work and home life more than the average bear....I have the boys while I am working for about an hour and a half each day (on a good day) and I try like the dickens to have all of my crucial calls made before this time.  However there have been occasions when I have had to lock myself in the bathroom with my computer in order to attend a conference call or talk to a doctor who isn't available before 4pm.  We make it work, no biggie, but I will admit it's a little stressful.  If all hell breaks loose, I can always work on cases after the boys go to bed.

So on days like today, when my "lunch break" is at 9:30am and consists of holding two screaming children down to have their throats and ears examined, and having one of these lovely children vomit on me during said examination, I feel a bit stressed.  I guess that would be true for any mom right?  First I took time off to get the boys checked out, and since they can't go to school, they are hanging around with me for a larger chunk of my work day.  Their afternoon has unfortunately consisted of Disney movies and a whole lot of "shhhhhh".  I wouldn't trade this scenario.....I want to be the one my kid vomits on (if that, you know, has to happen).  Thank God I chose nursing....for so many reasons.

I guess that is my way of saying HAPPY NURSES WEEK!!!!  To all of my friends and colleagues who administer chemo, blood, and bone marrow infusions, and then turn around and scoop poop, change sheets or hold hands this job is so so important.  At my previous job, it could be all about comfort, participating in a code, or providing a peaceful death.  At my current job, it could be about getting an expensive and needed prescription pushed through quickly, or making sure my patient has a ride to their appointment (and actually goes).  Some days it's all about's amazing what patients will tell you over the phone. Other days I am working on a life flight for someone to get to their transplant center in time to get their organ, or comforting a family member when the patient isn't doing well.  I never know what each day is going to hold, but I do know that at the end of the day, I will feel like I have left the world a little better than when I began.  Only nurses know that physicians, nutritionists, social workers, chaplains, physical therapists and everyone else involved in patient care would be lost without our knowledge of what's "really" going on.  We are the technologically savvy moms of the health care world.  We take on huge responsibility with very little acknowledgment.  And most importantly we CARE.  There just is no better job...oh except motherhood.

Saturday, 5 May 2012


Today is a very special birthday!  Jack is 5!!!  A biggie for sure.  We kept it low key over here this year.  For the first time, I didn't do a true "party".  We just did cake, lollipops and a craft at our play group (and invited Jack's grandparents).  We ended up with about 20 kids here, but it was a very laid back atmosphere, which was great for Mr. Jack.  He barely even cried at the birthday song this year....just covered his ears for a minute.  Of course no one knew that while he was sitting on my knee I was singing booda booda booda in his ear and I don't think he really even heard the song.....either way, it worked like a charm.  I think he had a great time.  He has been telling me he is tired all day today if that's any indication.  The decorations this year were of course lobster and crab themed.  I have always  made Jack a cake (except his third birthday when I had a 4 month old), but this year I cried uncle with the whole gluten/dairy free thing.  I was not up for making some crazy shaped cake working with a different "medium".  So we got cupcakes from our local gluten free bakery, and a little cake for the family for today.

Let me tell you, if you are going to have a kid with Asperger's, you want to have a Jack.  His "quirks" are most often positives, and the stereotypical behaviors that people on this end of the spectrum usually possess are frankly adorable with him (well, most of the time).  For instance, people with Aspergers are notorious for memorizing long quotations and reciting them at random.  Jack has for the most part already figured out how to work them into conversations appropriately.  So often we are standing talking to someone and they have no clue he is doing it, and I find myself going, "and there's Curious George again".  I am trying not to say it out loud, he doesn't need his cover blown :).  One of Jack's favorite activities is watching videos on You Tube about his areas of interest.  Below, I have posted a video of him reciting the beginning of a Julia Child cooking show about lobsters, complete with theme music.  A great way to remember his 5th birthday.  The boy is hilarious.

I wanted to do something to make him feel like a big boy today, he was so excited to wake up 5 this morning.  He ran into our room and said "am I really 5???".  So I decided to take him to a movie.  We went to see The Lorax, which was totally adorable by the way.  He did pretty well....made me giggle though because I still have to hold his seat down in the theater, something my mom still laughs about from my childhood.  In my case though I think she was still doing it when I was seven.   It worked out well and he sat for the whole thing.  It was a nice "date" with my big boy.  Every year, I count down the minutes until 9:52 am, when he was born.  His birth is always at the forefront of my mind on his day.  I used to yawn and feel like, "here we go again", when my mom would start talking about thinking she was going into labor with me one day and begging God to give her a little more time because she had so much laundry to do (he gave her 24 hours).  This was always the beginning of my birth story, which she talked about every year on my birthday.  I so get it now.  I NEED to relive Jack's birth every year.  It was clearly a huge right of passage (no pun intended) for him, but it certainly was for me, and our family too.  It was the moment when his father and I were truly and permanently joined for the rest of our lives.  Yes, marriage does this on paper, and in our hearts, but a child....we are both a part of him....our families literally joined with his birth.  This family is matter what.  A birth in a family has so much meaning.  (OK, bear with me, we are watching The Lion King right now, lol).  Our family is far from perfect.... I feel like I still have parenting training wheels, and frankly, marital ones too.  Oh hell, let's face it, I feel like that kid hobbling around with one training wheel for years because she just can't quite balance everything.  Sometimes I think I focus on that lopsided feeling a bit too much.....I forget that no matter how awkward it feels, I still manage to get where I'm going....
Anyway, I saw this the other day, and I think it is a good reminder for all of us. 

On a completely different (but happy) note, there is good news about Nathan.  We are officially going to Kennedy Krieger on May 18th for bloodwork and a full developmental assessment!!  Whoohoo!  Take THAT establishment!  He has qualified for a study on regressive autism that looks for signs of oxidative stress, which is being researched as a cause/contributing factor.  I have spoken with at least 4 other research recruiters so far, and two other studies that he qualifies for are not quite yet in the recruitment phase, so they will call me when they are "ready".  He is also going to be evaluated for an interventional study on the 18th that would involve either 2 hours of therapy through the facility 4 days a week or parent run interventions (after training of course).  How Houdini mommy would get her son all the way up to Greenspring Station 4 days a week remains to be by day right?  In any case, I am very excited, it's another step on our journey.  Also, in regards to my comments the other day that Nate seems "better" (more alert, more verbal) on antibiotics, I have been reading this book called "The Autism Revolution:  Whole-Body Strategies for Making Life All It Can Be", and wouldn't you know, the author references the fact that many parents have reported substantial improvement in their children's behavior/speech with antibiotics, with fever, and also with prednisone.  Of course, none of these methods could actually be used as "treatment" for autism, but the author points out that it does suggest that autism is more of a "state" than a "trait".  In other words, not hard-wired into the brain, and  possibly changeable.  There are stories of children that are severely autistic getting a fever and literally singing a song when they have previously been close to nonverbal.  And when the fever goes away, so does the progress.  CRAZY.  And encouraging to say the least.  The more I read about autism, the more amazed I am at the complexity.  Not only of the range of function among different people, but the range of "causes" and treatments.  What a tangled web to try and navigate. I mean, I read the other day that curcumin (aka turmeric) has shown significant anti-inflammatory powers and is being studied as treatment for autism, cancer, and Alzheimer's disease!   I guess the most important thing is to record everything we are doing.  Thank you blog!

I posted a picture of my early mother's day gift below.  I saw this website and just loved what these two ladies do.  Beautiful autism awareness jewelry that is not "in your face", and is also personalized for my children.  Their website is:

Wednesday, 2 May 2012


I am trying not to read too much into this.  But both John and I have noticed that Nathan is stimming less this past week.  The monotonous sounds are less, the flapping is less frequent as are the periods where he is "unreachable".  Of course, we know that he is on the antibiotic and the nystatin, so maybe we are "looking" for something.  Whatever.  This little boy is babbling more than he has in a long time.  He said "quack" at school yesterday.  He used to say "quack" all the time last spring....then he stopped.  So the fact that this is the word that came out really means something to me.  He is also VERY opinionated this week- refusing half of his regular food, throwing his cup at me when the supplements are in his juice, literally wrenching Jack off of me when he hugs me (hey jealousy).  Hooray!!!  I emailed the pediatrician, and she agreed that maybe he is still having a yeast issue....these things have a tendency to be chronic.  So we'll look into that when we are seen by the new doctor at the end of the month.  See?  Doesn't 6 weeks feel really long???

In the meantime, mommy is an email and telephone fiend.  I have finally mentally wrapped my head around the fact that participating in research studies might be the best route to go to get the boys optimal care.  I mean, I worked in an educational institution, almost all of my patients were on research protocols.  But somehow, when it's your kids....  The good news is that many of these studies are diagnostic...blood draws, saliva tests, checking for metabolic abnormalities or different types of overload to their little systems.  If these things are discovered, they may be treatable.  But the treatment is not necessarily part of the study.  In many cases, the treatments are standard.  The studies are more about determining how many children classified as "on the spectrum" may also have that particular issue.  So it's not as though the kids will be getting a bunch of medications, etc.  Some of the other studies involve behavioral therapies/modifications.  Once again, this will do no harm.  So why not?  Why not have more people weighing in on their issues?  People with excellent qualifications?  I have learned to combine and compare these opinions, not allow them to wreak havoc on my decision-making (well, most of the time).  I have come a long way from the day after Jack was born.  The lactation consultant was telling me to give him nothing but breast milk, the OB literally told me I was starving him, and the pediatrician told me his constant need to feed was actually "non-nutritive" sucking (how is this possible when he hasn't yet had anything to eat???)  and he needed a pacifier.  I almost pulled my hair out.  I have come to realize that while doctors have a lot of training and have seen a lot of cases, NO ONE knows my children as well as I do.  So I will compile these opinions and sort through possible interventions, and make the best decisions I can for the boys (with daddy's help).  For right now, of course, I have to wait for them to call me back!  And I am not a patient person....especially when it comes to the kids!  blah

My other project this week has been toy "reassignment".  When I spoke with the educators about Nate's lack of focus last week during the home visit, I was venting at one point and said that sometimes I feel like I should put at least half of the toys away.  To my delight, they agreed.  There are just too many distractions...and all of those battery powered toys?  My lord, we really need to buy stock in energizer!  Those toys are so....(annoying), I mean stimulating to kids that don't need any more stimulation than what their little brains are already providing.  So after the boys were in bed last night...out went the talking cookie monster, out went most of the "computers", etc (kept a couple for Jack).  Other than that, I kept blocks, shape sorters, balls, musical instruments, know....regular toys.  Funny thing is when the kids came downstairs this morning, they didn't even seem to notice.  Small steps, I know, but it's all I've got this week.  Oh, and we are working with Nate on his PECS pictures.  So far he threw one at does that mean he wanted what was in the picture?  sigh.