Feeling Good

Just over a week ago we had a huge celebration in honor of not only Liam's birthday, but also as a thank you to all those people who have helped us out this past year post-stroke.  In lieu of gifts for himself, Liam agreed to have all gifts donated to the play center at Loyola's Children Hospital.  He truly had a good experience there just about a year ago and was more than willing to pay it forward.

The friends and family we invited to our celebration were more than generous.  Books, DVDs, video games, toys, games, puzzles, cars, and so so so much more.  Lots of good quality toys that we know will surely help put a smile on the faces of some patients.

Liam had a neurologist appointment today so we arranged for delivery.  Liam was waiting anxiously for Meghan, the child life specialist, to come down and meet us with some wagons to carry the goods up.

It actually took two wagons to carry it all.

 

After the big delivery we ate lunch in the cafeteria, which we sort of missed after having so many meals there during Liam's stay.  They have a great salad bar!

Then, finally, it was on to the neurologist appointment.  Great news on that front... we're done with that doctor unless we start to notice any unusual behavior (seizures, dizziness, etc....)! 

He did have some concerns about the speech therapy Liam has been receiving and asked me if there was something else they could do to help the aphasia.  My response was that I didn't know of anything!  He vaguely remembers another patient using something so he's going to look into that for me.  We did discuss how the strategies he's been taught in therapy have been very helpful, but still the doctor feels that there's something more they could do.  We'll see how that pans out.  (I'm to call him in about a week.)

Waves

Liam's favorite pool while we were on vacation in the Dell's was the wave pool.  He loved everything about it - getting splashed, the waves pushing him up and down, riding in the tube, jumping the waves in the shallow section... and especially laughing at me when I got splashed!

This picture reminds me of the progress and results we're seeing in him since the stroke.  Some days are very good days - he seems to find his words more easily, his confidence seems high, things almost seem normal.  Other days aren't so good - he struggles most of the day to find his words, he realizes he can't find them, things are clearly not normal.

Yesterday, however, was a very good day.  In the morning hours before speech therapy his words were coming easily.  His confidence was high, which sometimes meant he'd say the wrong word, but would be able to fix it when asked if that's what he really wanted to say.  He went to speech and his therapist said he did a great job with all the activities that morning. 

After speech we ate lunch in the car and headed over to see the neurologist.  The day just got better.

His angiogram showed no abnormalities in the vessels of his neck.  The EEG we had done showed normal activity in his brain.  Most importantly for this test, the activity around the section of brain that was damaged was not slowed at all - the doctor was very glad to report this.  (Just a side note - the area of the brain that did not get blood/oxygen is dead and cannot be repaired.  So, the neurologist is interested in the area surrounding that section.)

I brought up our concern about the daily aspirin Liam has been taking.  Aspirin is a blood thinner and is often prescribed to stroke patients to prevent any further clotting.  Since he's been on this Liam has been bruising more easily (and he really doesn't need help with that) and of course when he falls and scrapes a knee we need to be sure that the blood will clot.  The doctor would like us to continue with the aspirin until six months post-stroke.  After listening to my concerns he figured the dosage of a baby aspirin could be split in half and still be enough for my 40 pound Liam - so we will continue with the drug, but only give him a half a pill a day.  Hopefully this will help with the bruises we've been seeing.

The doctor reminded me of what he told us in the hospital - that all of the children he's seen with this type and location of stroke have no long term deficits.  I was thankful to hear this again after six weeks of recovery.  He said everything will just take time and nobody knows how long.  I voiced my concern about his speech/language and he encouraged us to continue with the therapy and be patient.

We left the appointment and scheduled our next one for December.  December!  Until then all we've got on Liam's schedule is therapy.  No more tests.  No more specialists.  Just therapy!

Angiogram

We decided to schedule the angiogram we discussed with our neurologist.  The risks were low and it seemed like a simple procedure.  When I called to schedule I was asked if I thought Liam would be able to lie still for about ten minutes - this would allow us to avoid having to sedate him.  I asked more about the procedure and was told he would have an IV inserted, pictures taken with a CT scan, a dye inserted via the IV, and then more pictures. 

When we were at the ER he did a great job for the emergency CT scan without sedation.  So I figured he could do it again.

Our appointment was yesterday afternoon - I could tell he was nervous about it when he didn't want to get out of the van.  I assured him everything would be fine and he would be safe with the doctors.

The placement of the IV didn't go very well.  He hated it, cried, and screamed.  Which was strange, because he had an IV at the ER and was fine with it - watched as it was inserted.  Turns out that first IV wasn't placed well and when they tested it with saline it hurt him (hence the screaming)!

So, they had to try again.

Poor Liam.

Once they had a proper IV in the technician, doctor, and nurses were able to calm him down.  Promises of chocolate, stickers, and even some money were involved.

(Since I'm pregnant I couldn't be in the room with him, so Mike had the privilege of being with Liam and trying to help calm him.)

Once it was all over with, Liam, Mike, the doctor, and technician came to the waiting room where I was and declared that Liam "won the game!"  "He was the best patient and laying still during the pictures and the pictures turned out great!"  Liam was rewarded with chocolates, stickers, and a dollar from the doctor.  (This doctor also removed his white coat and threw it on the floor when he went in to see Liam and Liam started crying because of it.)

Afterwards we went to the zoo for dinner since we were only about five minutes away.  I thought Liam would be starving and eat everything in site (he couldn't eat for four hours before the procedure), but he barely ate.  He did enjoy parts of the zoo and was happy to be able to by a mold-a-rama bear with his prize money.

At the zoo

If It Were My Nephew...

Since I took Liam into the ER over the weekend we were able to schedule an appointment with our original neurologist for this week.   I remember feeling very comfortable with this doctor in the hospital and was pleased to see the comfort level remained the same in the outpatient office.  (Also - as a side note to any ISU grads - his brother-in-law is Skip Schaeffer from the Redbird's basketball team between 1996-1999.)

Because of the funny feeling Liam was having over the weekend, Dr. Coates would like to perform an EEG on Liam to check the activity of the brain, especially in the area that was affected by the stroke.  This will help determine the risk of seizures.  The doctor seemed confident that the EEG will show normal brain activity.  There are no risks to the test and it is non-invasive.  This will happen in a few weeks.

(We mentioned what Liam's speech therapist said about the funny feeling and he explained that that usually happens sooner after the stroke.)

Mike and I communicated with him that we investigated a second opinion at Lurie's and Dr. Coates was pleased with our decision to go there ("If I were to send you anywhere for a second opinion I would have chosen Lurie's and Dr. Wainwright."). 

We asked Dr. Coates for his thoughts on performing an angiogram on Liam as a final test and for a definite answer of "everything is normal".  He said he doesn't normally perform angiograms in cases like this and is confident it would come back normal.  However, he did say, if it was his nephew he would encourage them to "go ahead and do the test." 

We asked about the risks and Dr. Coates said the risks were very low for Liam.  Had the team found Liam to have Moyamoya during any of the testing, then the risk for the test causing a stroke would be high because of the nature of the disease.  But, Liam does not have anything showing that would make our doctor believe the test to be risky.  Also, the dye that is used in the angiogram is the same dye (or contrast) that they already used for his MRI and MRA.  (Rarely patients are allergic to the dye and that causes their vessels to spasm.)  The biggest concern would be the general anesthesia that would be needed to perform the test.  This test is definitely invasive and the decision to move forward with it is something we will seriously consider.

As our appointment came to an end Dr. Coates said, "I feel like we have a good plan for moving forward."  I couldn't agree more.  We've got the EEG scheduled, another follow-up appointment, and maybe an angiogram.

That Funny Feeling

Liam had speech and occupational therapy today.

I told his speech therapist about how we ended up in the ER because Liam communicated (after choices) that he had a "funny feeling" in his face.

Want to know what she said?

She said that often as patients are recovering from a stroke they will get a tingling or numbing sensation as the nerves reconnect. 

I admitted that nobody ever told us that.

My guess is that feeling probably surprised Liam, or even scared him, and that is why he was crying.

I'm not sure if I wouldn't have taken him into the ER knowing this, because even the therapist admitted that some stroke victims will assume another stroke is happening when they feel that sensation.

So the good news is Liam's nerves are reconnecting. 

The bad news is I'm not sure I'm asking enough questions of the neurologists or the right questions.  I mean, we've seen three different neurologists now on three different occasions (hospital, second opinion, and ER) and not one of them mentioned this.  Maybe it's something they're actually not that familiar with and something that therapists that work with stroke victims are very familiar with.

Second Opinion

I know.  I know.  It's been an entire week since I last updated.  We've been busy.  We took the boys to their first Drum Corp show, left a day early for a vacation in the Dells, swam, swam, and swam some more.  Everything was awesome.  We had to take Liam home two days early from vacation to make a neurologist appointment in the city. Since we felt just a tad guilty about leaving vacation, we decided to make a day of the trip.  We took the train, a taxi, visited the zoo, and got some popcorn for the train ride home.



At the zoo 

The neurologist thought Liam looked great.  He tested the strength on this right and left side and said there was still a slight weakness on the right - something Liam's OT and PT have reported.  He also said that there's no treatment or drug that is given to children while they are in the acute stage of a stroke - so nothing different could have been done in the ER or at Loyola upon our arrival.  He agreed with the plan of treatment that was given to us (therapy and a baby aspirin a day).  He took the medical reports we brought with and studied them in his office for about 40 minutes while we waited.

Waiting at Lurie's Outpatient Center in Lincoln Park

After looking over the report he did suggest one more test that would give us a definite answer to be sure there are no blockages in the neck.  A type of angiogram - it would require an overnight stay in the hospital, sedation, inserting a dye into his blood stream, and checking the arteries in his neck.  These were checked with the MRI and MRA he had done at Loyola, but this test is just more accurate and would show smaller blockages that might not appear on the other tests. 

If this test comes back normal than this neurologist would consider this stroke to have no known cause.  I will say here that the main doctor at Loyola that oversaw the case feels that serious consideration needs to be given to the chicken pox vaccine causing this stroke - if no other causes are found.  Our own pediatrician also agrees with this.  There have been reported cases of this happening in other children.  I will definitely be talking more of this in the future.  But for now our goal is to focus on ruling out any cause that would require a specific treatment and for continuing with our therapy.

It this test did show a small blockage then Liam would be monitored as he grows with MRIs and would continue the aspirin regime. 

I'm not sure if our original neurologist will be suggesting this very same test at our follow-up appointment.  It needs to be done after the acute stage of the stroke is over so this may be something he already had on his radar.  We will be asking him for his opinion before we make any decisions.

The neurologist from Lurie's (second opinion guy) also suggested a few blood tests that he didn't see on the report.  We're seeing the hematologist today so we'll bring those up with her.

The view from the doctor's office.

Signs of a Stroke (in children)

According to the book, Caring for Kids, strokes afflict about 1 child in every 20,000.  Liam's speech therapist shared that most people don't recognize the signs of a child having a stroke, because it's not something people typically think of when a child is exhibiting abnormal behaviors.  Some may explain the behavior by thinking the child just isn't feeling well, is over-tired, or acting goofy.


I will admit that my first thought when I noticed something with Liam was that he was over-tired and acting goofy (because, boy, is my Liam ever a goof-ball!).

We were about an hour away from home and spending the weekend at my sister's house while Mike painted the baby's room.  We spent all day Saturday swimming, watching movies, swimming some more, and then playing a bit of Wii before bed.

We finished up a game of Wheel of Fortune on the Wii and I had the boys go upstairs to get ready for bed.  Liam went up the stairs just fine.  I'm not sure when it happened, but the boys were laughing with each other (or maybe just Quinn was laughing) - I was tired and just wanted to get them into bed, so I told Liam to go use the toilet.  He started crawling to the bathroom and I told him to get up and walk.  After counting to three (my usual "it's time to listen method") I picked him up and put him on the toilet.  He became upset and started crying and when I went to look at him he was having troubling standing and pulling his pants up.  I helped him, still thinking he was way over-tired, up past his normal bedtime, and had him walk back to the room.  As he was walking he ran right into the wall on his right side.  Then I started thinking maybe something is wrong.

I stood him up in the hallway, had him look at me, and knew something was wrong.  I took each hand and had him squeeze my fingers.  He could not squeeze with his right hand.  He couldn't move his right arm at all.  I then made him smile and noticed that the right side of his face stayed down while the left side smiled.  (He wasn't talking or crying at this point at all.)

At that time I called for my sister to come and look - I don't think she saw anything, but I assured her "we have to go" - I left Quinn with my brother-in-law and my sister and I headed to the nearest hospital. 

On the way I noticed Liam wasn't talking, couldn't move anything on the right side of his body.  I still wasn't thinking of a stroke.  Who would?  We got to the ER around 9:30pm and the first thing the nurse mentioned was Bells Palsy.  The nurse and the doctor encouraged Liam to stick his tongue out, squeeze their hands, and lift his legs - none of which he could do until after a few hours.  He wasn't talking at all until about midnight.

Liam - 11:00pm - June 30th

about two hours after I first noticed something was wrong

Look at the eyes - and the crooked smile

After a CT scan came back normal the ER doctor told us we'd have to transfer to a hospital with a pediatric neurologist because clearly something was wrong, even with a normal CT scan.  We left St. Anthony's hospital in Rockford for Loyola's Ronald McDonald Children's Hospital at 1:18am - four hours after arriving in the ER.

We arrived at Loyola at 2:30am and quickly made our way to the Pediatric Step-Up unit.  I'm not sure what time we saw the neurologist, but as soon as he saw Liam he said he felt he suffered from an acute stroke (meaning a stroke that came on suddenly) and he ordered an MRI stat (right away).  It wasn't until almost six hours later that Liam had an MRI that showed that he did in fact have a stroke. 

There are two types of strokes: ischemic and hemorrhagic.  Ischemic involves a clot - hemorrhagic involves bleeding.  My understanding from 100 Questions & Answers About Stroke, if he was having an hemorrhagic the CT scan would have shown bleeding in the brain.  Of the two - an ischemic stroke is the one you'd want to choose if you had a choice in the matter.  And luckily for us, that's the type that Liam had.  By the time the MRI was performed the clot had already cleared and blood was already flowing to the part of the brain that was affected (the basil ganglia).

I've described what I saw in Liam, but thought it might be helpful to list the signs of a stroke that I read about in Caring for Kids.

• weakness in one side of the body
• weakness of facial muscles
• changes in vision
• difficulty swallowing (drooling)
• difficulty with balance and coordination
• older children might complain of headache