Strep and PANDAS awareness

This past weekend with the boys was bad.  Sometimes when I say that, Dave gives me a reality check and says "they are always bad!" which isn't true.  However, I knew it wasn't just me when Dave said to me this weekend that is was the worst weekend he has ever had.

I couldn't put my finger on what was different.  They are generally high energy, but they were turbo powered this weekend. Ben literally looked like one of those cartoon characters whose legs spin in a circle as they run.  We were correcting their behavior 10-15 times an hour (between the two of them). In addition to this, there was screaming, screaming over everything.  Screaming uncontrollably for 15 minutes when told they canot watch a movie that we don't even have in the car.  Refusal to put on clothes.  Refusal to eat.  Refusal to bathe. 

Monday Ben refused to get in the car with me to take Liam to school.  He physically fought me.  He stayed with our house cleaner.  Then later that day, a friend who was at the house had to help me as he punched, kicked, and scratched at me to pick Liam up. Then around dinner time Liam started crying that he had too much mucous in his throat; I thought he was just overtired.

At 3am on Tuesday morning Ben woke crying saying his ears hurt; I suspected an ear infection.  I made a doctor's appointment and was expecting the diagnosis to be ear ibfection and pink eye as his eyes were goopy.  He had neither of those, but tested postive for strep throat without a single symptom.

Meanwhile, Liam and Ben were pushing everyone of my buttons.  Liam cried at school because he thought I was not coming to get him and was leaving him at school.

Wednesday (today) I took him in...positive for strep.

Do you know about PANDAS?  I didn't know much, then I went to these websites.
http://pandasnetwork.org/
http://www.pansawareness.org/Home.html

Check out the diagnostic criteria:

Symptom onset includes Primary ONSET of OCD* and/or Tics
along with at least two other following symptoms:

.

• Tics or other abnormal movements
• Severe separation anxiety, Generalized anxiety
• Irritability, Emotional lability, Aggression, Personality Changes
• ADHD, Inability to concentrate
• Sensory sensitivities
• Deterioration in learning abilities and school performance
• Developmental and age regression (inc. Deterioration in handwriting)
• Sleep and night time difficulties
• Urinary Frequency or Daytime or night-time secondary enuresis

*OCD may present as severe anxiety

Obviously, this is hard to differentiate from Liam's already existing diagnosis of autism and anxiety disorder and Ben's sensory issues.

The good news is that usually the awful behaviors decrease after a round of antibiotics (just like it would if you were treating regular strep).

I REALLY hope so because I want my kids behavior to do back to their version of normal.

Houston, we have pee!

Well, I have implemented my battle against Ben's poor interoception/ lack of body awareness. We implemented brushing therapy on Friday.  Today during our normal no diaper time, Ben told me "I pee witte (little) bit" so I rushed him into the bathroom and gave him his option of peeing stances.  He has been practicing for years so he stood, grabbed his penis, and with PERFECT aim peed into the potty. 

Just like it was no big thing.

But it is HUGE.

Trying to remember this is the first step of many but tonight I'll celebrate.

Issues du jour

Issue 1: Ben is finally interested in talking to share ideas, at least in very small settings and with people he knows well.  GREAT!

Did I just say great?  Let's change that to a great big headache.

Liam likes to talk, a lot.  If you let him, he will talk while walking in circles non-stop for hours.  I drove to Atlanta with him this weekend and on the way there, he talked the entire 3 hours with only occasional "hmmms" of agreement from me.

Now, Ben is also trying to talk.  This has resulted in a lot of tears from both boys and accusations that the other isn't letting him talk.  Have you heard about how Asperger's monologue?  Have you ever wondered what happens when you get two together and they both try to monologue?  I can tell you it isn't pretty. By the end of the day, I don't want anyone talking to me.  Today it resulted in a meltdown before school.

Issue 2: Ben is waking at night crying and saying his throat hurts.  It started with his last ear infection.  Does he have strep throat or still infected ears or is his reflux back to waking him up at night?

Issue 3:  The boys have finally watched their first movie all the way through, actually 3 movies. Both of them are into Star Wars.  There have been obsessions before but they have been Liam's alone.  Now they are both obsessed.  They want the Playskool figurines but they are hard to find.  What we have is fought over, hoarded, hiddenw ith the secret place forgotten, and I seem to live and breathe Star Wars between movie quotes, managing fights over figurines, and listening to Liam's ideas for episodes 7 throuh 136.

On the fringe

Today was a first appointment for Ben to be evaluated by a psychologist to look as whether his development is on track.

We got to the appointment at the sane time as several older boys. I handed Ben a train and a Princess Leia Angry Bird stuffie. We rubbed both across his face. A boy probably about 9 and who appeared to have Asperger's sat down next to him and tried several times to initiate conversation. Finally, the boy touched Ben's train and asked to see it. Ben handed it to him. The boy continued to talk to Ben while he say there with his tongue out slightly and drooling slightly.

Then we were called back by a staff member for his developmental screening. I was disappointed she had not read Ben's 2011 developmental ped report I dropped off earlier in the week. While we reviewed information she could have read, Ben stacked blocks and then stacked another toy on the box of blocks. He saw crayons and called them chalk and requested them by pointing and demanding "chalk." he scribbled for 20 seconds and then was all done. In an effort to amuse him, the clinician did peek a boo, which made Ben either crash into a wall or fall face first on the ground, both in fits of giggles.

The clinician ended with the thought she didn't think we had anything to worry about but we'd meet with the psychologist next. We went into a room with more toys and the psychologist came in. We were with her for 30 minutes and Ben never acknowledged her and asked me one question. He amused himself by turning knobs on the thomas train table, taking a wooden puzzle apart, pushing a doll stroller around, and walking the boundaries of the room.

The psychologist asked me more questions, but these were not in his history: eye contact (poor), pointing (very good), pain threshold (high), dairy intake (very low), and social interactions (parallel play). She said we'd have a 2nd appointment with testing. She said to take my time transitioning out of the room and remarked with shock " he transitions easily?" when Ben had no problems. We have been working on transitions for 2 years now.

I am not feeling hopeful that the evaluation will yield much.

We got home and Ben went to his room and immediately lined toys up. Why is stuff like this more clear to evaluators?

Just when I thought I knew everything about SPD

In the summer of 2009, it became clear that something was off with Liam's development and I threw myself into research, and most of it focused on Sensory Processing Disorder (SPD).  I learned there are actually 8 senses.  Then Liam was diagnosed with PDD-NOS and I remained aware of SPD but started researching other things as well.

In fall 2010, I became worried about Ben and blogged about it: http://routhierfam.blogspot.com/2010/11/it-is-probably-nothing.html

Obviously, it wasn't nothing.  Ben started Early Intervention and a year later was evaluated by a developmental pediatrician, who confirmed Ben has SPD and is at risk for a future diagnosis and recommended speech therapy, OT, ABA, and social skills groups.  Without the autism diagnosis and without his delays being severe, we have been unable to secure much of the recommended treatment.

While all this was happening, I was trying to potty train Liam, which was not easy.  Around the time, Liam turned 4, he finally became dry during the daytime.  He is still in nighttime diapers and that will not be changing in the near future.  The problem is that Ben turned 2.5 about a month after Liam was finally consistently dry during the day.  Then shortly after he turned 3, we moved from Alaska to Alabama.

Since arriving in Alabama, we have been trying to encourage Ben to use the potty and it has been a dismal failure.  Initially he refused to sit on a potty for longer than 5 seconds as he won't sit still.  Now he will sit, but he has NEVER once managed to produce anything in the potty.  If I let him run around naked, he will pee on himself and deny he has done so with urine running down his leg.  He can poop while doing gymnastics.  When I change his diaper, he asks me if he has peed or pooped.  He seems to have no awareness.

His OT recently left for another job and he has a new OT, and Wednesday she mentioned that Ben has poor body awareness which is why he drools so much and why he is still in diapers.  I knew body awareness was "part" of SPD but I had forgotten about it.  I had confused it with motor planning (which Ben excels at but Liam struggles with) and with vestibular sense (which is why both boys crash).  Body awareness is actually called interoception and what I discovered about caused all sorts of light bulb moments.

This website about interoception had this to say: "If a person is under-responsive to interoception, they may not feel or respond to these sensations appropriately, quickly enough, or at all. They may rarely feel themselves breathing or their hearts beating. They may not feel hungry or thirsty often, so they may not perform these everyday tasks as often as others because they do not sense the need to. They will often be slow potty trainers and may end up developing enuresis because they do not feel the need to eliminate bowel waste or urine before the body begins to perform the task anyway. They may not breathe or sweat when their bodies should because they do not feel the need to."

Light bulb!

Ben happily skips meals and has never been interested in eating.  He didn't nurse often.  I always attributed it to reflux and even SPD and oral defensiveness, but what if he didn't get hunger cues?  That makes a lot more sense, as it explains multiple issues for him.

Then there is this website on interoception.  It affects digestion!  Digestion!  In another website it mentions that individuals with a poor sense of interoception often have digestive problems, such as constipation and/or diarrhea.

Light bulb!

That same websites and others show that much research has been done to connect interoception to mood, as that is the sense which regulates are sense of well being.

Light bulb!

Ben is my child who has always bounced between strong emotions--screaming one minute, giggling the next.  This cycling of emotions has always worried me as I have a family history of bipolar disorder.  It has also made him hard to evaluate as his compliance varies day to day and moment to moment.

I was going to wait until we moved to have Ben re-evaluated but am starting now.  He has a first appointment with a psychologist on February 7th.

In the meantime, I am going to dig out our old brushes and start Wilabarger brushing protocol as I read somewhere that it helps interoception and brushing was quite successful with Liam.  Here is a list of things I am going to look into for improving interoception: http://www.sensory-processing-disorder.com/interoceptive-sense.html  I am also considering buying some musical sensors that go inside a pull up as it sounds like a good way to alert Ben by sound that he is peeing.

New Year, New Start

I found this post this morning from a year ago, the start of 2012.  It was interesting to read back on it. Some things I got wrong: Ben is not daytime trained and has never once peed on a potty.  Travel is not easier as evidenced by Liam staying awake for 48 hours straight during our move from Alaska, despite being given 4mg of melatonin.  Other things I got right..... I DID come to acceptance of our therapy schedule and life and I did start exercising.  I am proud of me.
Here is the year old post:
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I went back to re-read my summary of the year 2010.  Thankfully, my summary of 2011 is much more positive, and thank goodness 2009 and 2010 were tough years, and I needed a break.

2011 was the start of a new chapter for our family.  Liam changed so very much over the last year and is now such a talkative, social little guy that it is hard to remember where we were at 2 years ago.  Liam finally became daytime potty trained.  He has finally started to answer questions and after the age of 4 F-I-N-A-L-L-Y started to ask questions!  Ben stopped nursing this summer and seems to have mostly stopped spitting up, and he was weaned off reflux medicine.  It wasn't all roses as Ben has been given several diagnoses this year: Sensory Processing Disorder, Mixed Receptive-Expressive Language Disorder, and Early Childhood Developmental Delay, but having travelled the special needs/special education path once, I feel more peace the 2nd time around.  As for me, I met many of my goals for 2011, and have spent the year enjoying my boys, reading, hiking (though not as often as I hoped), and trying to find happiness in everyday moments.

2012 will bring more change....another move for us....it will be Liam's 4th house and Ben's 3rd.  It will be Dave's 5th assigment (6 if you count the deployment) since Liam was born.  Ben will start preschool and our years of raising a baby will be over for good.  This is the year I say goodbye to all things baby related.  Liam might or might not (I keep changing my mind) start Kindergarten in the fall.  We are at the cusp of entering the stage of childhood where we can more easily travel and our boys are independent enough to participate in activities.  Hopefully at some point this year we will finally have two children that can talk. We should have two daytime trained boys at the end of this year.  I would like for me to gain an acceptance of our therapy schedule (for Liam--speech 2 days a week, OT 3 days a week, ABA 2 days a week, special education 5 days a week; for Ben--Early Intervention-1 day a week, speech--1 day a week, OT--1 day a week, Social Skills group--1 day a week, and Floortime 1 day every 2 weeks).  I hate the non-stop going but both boys have made so much progress that I need to accept it as something that is needed at the moment.  When Ben starts school, I want to start an exercise schedule.  I have tried to exercise regularly over the last year but fail at it as I seem to have no free time (see schedule above).
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2013 will bring yet another move.  For 2013, I am again hoping for two daytime trained boys and an end to diapers.  I'd like to keep going with the exercise routine I started.  I'd like the boys to have re-evaluations by a developmental pediatrician and school evaluations for IEPs.  Maybe I can even start thinking about what type of part-time work I can do.

Christmas Eve

We have started little Christmas Eve traditions.

First we feed the reindeer:

Then we take matching pajama photos....poor Ollie dog!

 

 

In case you wonder how we get photos like this, it involves alot of outtakes.....A LOT!

Then we read "Rudolph" and "The Night Before Christmas" from the books my mom bought me in 1978.

 

Then we put out cookies for Santa:

Then it is lights out!