The battle with strep continues

On Monday and Tuesday morning, I noticed blood in Liam's nighttime diaper. This reminded me of March 2011.  I had a Wednesday afternoon doctor's appointment scheduled for him when Ben's school called on Wednesday morning that Ben had thrown up.  Due to Ben's social language delay, they found a pile of puke and had no clue who did it until they found Ben with some on his shirt and crocs.  A strep test confirmed that BOTH boys have strep.

AGAIN.

What is interesting about this is that Ben had been in underwear for 2 plus weeks and about 5 days before the positive test began peeing in his underwear and went back into diapers.

Let me remind you of the criteria of PANDAS:

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

 

Ben has been waking up early, and repeating everything he says.

 

Liam's hyperactivity, aggression toward family members, and anxiety is over the top.

 

I hope we figure this out soon as I am tired.

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.

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.

The week that brought us all down

Last week was a week where nothing seemed to go right or as expected.  It seemed to last forever and the weekend was not at all relaxing.

Monday was Ben's school eligibility testing, and my sullen boy was all smiles and cooperation and charm for the SLP, SPED teacher, and school psychologist who met him.  He told them what his name was, showed off his academic skills, and spoke in sentences...yes, sentences!  He kept smiling at me and saying "Mama, I having lot fun!"  I am not sure where this talking version of Ben came from but he only vaguely resembled my real son.  In any case, we go back on March 30th for the results of the testing and to write his IEP, if appropriate.  They couldn't tell me the results of the testing on the spot, but did say they were concerned by the amount of echolalia they heard and some other speech irregularities.

Tuesday was the first day of spring, but we live in Alaska and still have more snow on the ground than I am tall, so it was a bit anti-climatic.  We are experiencing break up, which means the snow and ice is starting to melt and break a bit.  Highs are still below freezing but the sunlight we are getting is making things melt. I volunteered in Liam's school and that is always hard for me emotionally as I see how different his play is than his classmates.  Around this time, Ben suddenly decided he needed to be held non-stop so I should have known what was coming.  I believe this photo was taken that day as the boys had woken at 3am and never napped despite riding in the car for over 3 hours that day:

Wednesday seemed to be normal until the last afternoon.  I went to leave for karate and Ben was covered in liquid poop up to his shoulders.  I got him clean and got Liam to karate on time.  That night Liam had soft poop.  I was worried as we had a full Thursday planned and Dave was even taking leave.

4:30am Ben woke crying with another awful diaper.  We had just got him cleaned and back to sleep when Liam woke saying he had to poop....and he ended up vomiting.  I cancelled all school that day and left Dave to deal with the boys.  Our heating system was getting a check that day and it was discovered our hot water heater was leaking so we lost all hot water.  Somewhere in there I got my hair cut and then I went to meet with the neuropsychologist for the results of Liam's testing.  The results need their own post, so more on that later.  The boys seemed better by afternoon and we went to bed hopeful....until 11am when Liam woke crying and we got into his room just in time to watch him projectile vomit everywhere.

Friday morning Ben seemed better so I took him into Anchorage for a PT (physical therapy) assessment while Dave stayed home with Liam.  It turns out that Ben DOES need PT in order to work on his extreme toe walking.  We got home, and everything was fine until the evening whenBen was suddenly back to liquid poops.  Friday afternoon we got a new water heater, but somehow it has screwed up our water pressure and now hot water comes at only a trickle.  We still haven't fixed that.

Liam was better by Saturday afternoon but Ben was still sick on Sunday.  After the last week, I need a vacation, but this week we have: Liam's PT assessment, PT and OT for Ben, speech (x3) and OT (x2) for Liam, Floortime for Ben, Early Intervention and playgroyup for Ben and ABA for Liam.....plus Ben's IEP meeting and meeting with Liam's SPED teacher to plan a new IEP for him given the results of the neuropsychology testing.

Looks like we are headed to our 3rd ear tube surgery

My boys don't nap, so when Liam falls asleep for his 3rd during the daytime and it is at the emergency room, then you know he is quite sick. 

We have had a cough/cold yucky sickness in our house for about a week.  I thought that alone was bad as I was unable to move on Friday and for days Ben cried unless I held him 24/7. 

Then Sunday Liam woke up crying that his right ear hurt.  I didn't take it too seriously as he has ear tubes and that should relieve any pressure or pain or swelling from ear infections.  I was thinking maybe he got strep throat and it was causing ear pain.  Then he threw up in the master bedroom, and spent all mroning laying around and occasionally crying.  Then he fell asleep on the couch and when he woke, he would not stop crying.

So Dave took him to the ER, and the doctor said he has an ear infection in his right ear and she could not see the tube due to swelling.  But in his left ear, there is a tube but it appears to be in the wrong place.  She sent Dave and Liam off with numbing ear drops and antibiotics.  We figured things would look up from there.

Then on the drive home, Liam puked all over himself, the carseat, and the car.  He is still crying that his ear hurts this morning, so it looks like we'll be cancelling any therapy and school.  He follows up with his PCM in 2-3 weeks and it looks like I will be asking for an ENT referral to discuss getting a 2nd set of tubes placed.

Not for the squeamish

At the end of July, Dave will have spent 3 months of 2011 TDY....pretty amazing for someone who is supposed to be learning how to run a JAG office (you know a job that requires him to be in the office).  I digress.....I am a bit overtired and a lot hormonal.

This trip reminds me alot of a 2009 post, elbows deep in poop.  Thankfully in the almost 2 years since that post was written, things have improved, especially in the sleep area. 

However, one week into this TDY and I am elbows deep in poop and vomit....and the TDY is only 1/3 over. 

Last Friday I was putting Liam to bed first and was dressing him while Ben played in the tub.  I heard Ben yelling "throw" which usually means he is throwing the bath toys and soaking the bathroom in water.  Oh, how I wish that had been the case.  I found him with balls of poop in his hand and poop floating in the tub, stuck to the bathroom cabinets, on the floor.  Liam immediately spun up into meltdown mode and I needed to simultaneously calm Liam, get him to bed as he was overtired, get Ben into a clean bath, and clean the poop before anyone played with it anymore.  In case you cannot count, I have 2 hands, and all that was impossible.  We survived, and eventually everything got done.

Ben has been waking at night.  When he wakes, he generally takes up to an hour to soothe back to sleep.  Last night he woke at 11pm and I was doing a victory dance as he fell back asleep quickly with some simple back rubbing.  My celebration was short-lived when I woke to Liam crying at 12:30am telling me "I spit" which in Liam translation means "I vomited the content of everything I ate all over my bed."  As I got him into the tub, I discovered he had been sick out of both ends of his body. When Liam throws up in bed (and sadly this is the 4th incident in 9 months), Dave usually deals with cleaning the bed up while I deal with Liam.  Once it was clear Liam was calm and happily playing in the bath, I started cleaning up his bed.  I was trying to clean vomit off Jaquar (one of his special stuffed animals) when I head him crying again.  I find him in the tub with puke floating in the water and covering his chest and before I can figure out what to do, he starts throwing up more.  I was waiting for his head to start spinning around.  I rinse him off and move him to my tub and resume cleaning the bed.  Once Liam is clean and his bed is stripped and re-made, I check on him....just in time for him to throw up again.  Thankfully, I got him in front of the toilet in time.  Then I clean up his bathroom and read him some stories.  He starts crying again and throws up again.  By this time, it is 3am and I am so tired that I feel nauseous.  I make him a sleeping bag surrounded by towels in my room and ask him to relax.  An hour later, he is still awake and demanding to go to his bed.

I fell asleep around 5am and was woken up by Ben at 6:30am.  Thankfully, Liam has kept almost all of the contents of his stomach in place since waking up.  I am tired though, and have had enough of poop and vomit for the time being.

As if June 30th isn't bad enough

On June 30, 1983 my mom committed suicide. June 30th is always hard for me.  I go around with the lyrics to Fleetwood Mac's "Landslide" in my head:

"I took my love and I took it down
I climbed a mountain and I turned around
And I saw my reflection in the snow covered hills
'Til the landslide brought me down

Oh, mirror in the sky
What is love?
Can the child within my heart rise above?
Can I sail thru the changing ocean tides?
Can I handle the seasons of my life?

Mmm Mmm... I don't know... Mmm Mmm... Mmm Mmm...

Well, I've been afraid of changing
'Cause I've built my life around you
But time makes you bolder
Children get older
I'm getting older too"

There are alot of reasons why I think of that song, but they deserve their own post.

In any case, I thought yesterday was a bad day and I was hoping to just kind of glide through today.  Those hopes were dashed when Liam threw up in his bed before 6am.  Now Ben has a bloody diaper rash.  Between my already sad heart, my awful chest cold and loss of my voice, one sick preschooler, and one sick toddler, I am wishing I could just skip ahead to tomorrow. 

Strep, where?

Poor Liam has anal strep.  Yup, strep in his butt.  In case you ever see blood when you wipe your kid's bottom that cannot be tied to anal fissures or hard poop, I'd recommend asking for a strep swab.

This is one of those things I wish I never had to learn about.

On a lighter note, I am guessing that means I need to disinfect these trains (as well as my whole house):

Other than waking at 4am today, Liam seems to be in a great mood and feeling fine.  I really hope Ben doesn't get it as he isn't nearly as good at being sick.  Considering the boys were sharing a bath up until yesterday, I am not too hopeful. :-(