Continuining to battle strep

For timeline purposes, the date strep first entered our house (this year) when Ben tested positive on February 26th.  Liam tested positive the next day on February 27th.  Based on their behavior I became concerned about P.A.N.D.A.S.  Life began to go on as normal, though Ben seemed to develop a cold virus of sorts while on antibiotics.  Both boys finished their antibiotics on March 8th.

That very night I woke with shooting pains in my throat.  By morning I felt worse, and since it was a Saturday (March 9th), I went to Urgent Care and tested positive for strep.  My tonsils were so swollen that I got a short of steroids in the butt.  It was the sickest I felt in a long time and even on Monday, I wasn't feeling myself.

Tuesday, March 12th Liam was awake in the middle of the night and Ben woke with goopy eyes.  As soon as Liam woke, he said he had a headache and he didn't want to get out of the bed.  So I packed them up to go their new off base pediatrician (who we saw last month for the strep).  Both boys were swabbed for strep using the rapid strep test.  Liam tested positive on the rapid and Ben tested negative on the rapid.  His pediatrician claimed it could be a false positive based on his recent bout of strep.  However, this article from a medical journal published in 2002 does not support that and in fact shows that the rapid test is more accurate for recently affectied patients: http://www.jabfm.com/content/15/4/261.full.pdf

The next day, March 13th Liam was up at 4am saying his throat hurt, he had a headache, and his tummy hurt.  We went back to the pediatrician who had cultured Liam's positive rapid test (not not Ben's negative test) and said the culture was negative and Liam must have something viral.  The only positive of that day was I got my first double nap since November 2009.  I made an appointment for the boys to go to my doctor as he opens at 7:30am.

Overnight Liam began to run a fever.  By the time we got to the doctor on March 14th, Liam's temperature was 102.6, he was lethargic, not interested in drinking due to throat pain, and miserable.  My doctor did rapid strep on both boys.  This time Ben was positive and Liam was negative.  He agreed with me tha both needed antibiotics.

I am ready for our war with strep throat to be over.  I am worn out after this week.

Ben's speech evaluation, take 5

It seems we cannot get speech therapists to agree on Ben's speech.  His speeh evaluation done as part of his developmental evaluation in October 2011 showed a severe language delay, and recommended private speech therapist.  The private speech therapist who saw him briefly dismissed him in December 2011 or January 2012 saying he'd catch up.  Early Intervention considered him to be speech delayed and so he had a speech evaluation in April 2012 as part of the process of transferring out of early intervention into preschool services.  They found him to be speech delayed and recommended twice a week speech at the local elementary school.  When we moved here, he was evaluated in the fall and the speech therapist felt his articulation was 4-6 months delayed and did not require therapy.

Same kid, different SLPs, different results.....It is a bit perplexing.

So, he was evaluated by Easter Seals by the same therapist that provided speech therapy for Liam in 2010.  She recognized him as Liam's little brother and commented how sweet and compliant he was.  He even told her he had to pee and came out to use the potty once during the evaluation.

She needs to score the results but she saw several areas of concern.
- Her biggest concern was how much Ben relies on echolalia to communicate.  She said she was surprised to hear so much echolalia, even though she knew I was concerned about it.
-He has issues with word retrieval where he knows the word but cannot seem to access it.  I need to look more into this as this is part of dyspraxia, I believe and if I am not mistaken can be connected with other issues.
-He drools and has bubbles while trying to talk, and clearly has low oral motor tone.
-He has perseveration, which means he repeats things and gets stuck.  During the testing, he'd give an answer to the previous question, not the one that was asked.
-He drops negatives and often says the reverse of what he means.
-He has pronoun confusion.

Am I the only one who notices how many of these speech issues occur in children with autism, especially the echolalia, perseveration, and pronoun confusion?

Continued Aggression

In the continuing saga of last week's strep, there are some updates. 

The weekend was calm and I was hopeful that the antibiotics had killed off crazy behavior.  Sunday was the first time in over a week that the boys seemed like themselves.

Ben saw the ENT for an appointment scheduled after his last ear infection....since July he has had 4 ear infections and 2 bouts of strep throat.  The ENT recommended another set of ear tubes and a tonsillectomy.....This will be Ben's 3rd surgery, the 4th ENT surgery between the two boys, and the 5th surgery I have managed as a mother in a little over 3 years.

Then all hell broke loose yesterday afternoon at gymnastics when Liam was asked to sit up while waiting his turn (he was laying down).  He said no and was asked to sit out a moment and then he HIT his gymnastics coach.  His coach brought him to me, and I was trying to calm him down......Not realizing that class was almost over.  Suddenly, we were surrounded by people and Liam from being angry to a full blown sensory meltdown.

He began to hit me and was grabbing my necklace.  I was trying to wait until everyone left so I'd have more space to move him out.  He realized Ben left his socks on the floor and became upset about that.  He overheard friends were going for doughnuts and became furious with me for saying we could not go.  Ben actually cooperated and found his socks.  I held Liam while pinning his arms to stopp him from hitting or choking me while I put on Ben's socks and shoes.  I left Liam's shoes off as I saw no way to put them on.  Then I carried 50 pounds of flailing, kicking, hitting my face Liam and my diaper bag while holding onto to Ben's hand.....how?  I don't know but I managed. 

Once in his 5 point harness, Liam began to throw anything in the car he could reach and kept grabbing Ben's hand.  I was terrified he'd break Ben's fingers. 

The meltdown lasted about 20 minutes though it felt significantly longer.  It ended as suddenly as it started.

That is the worst meltdown he has had in about a year, since this: http://routhierfam.blogspot.com/2012_01_01_archive.html  But the aggression is so unlike Liam.

So is it autism or is it PANDAS?

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?