April 25, 2011

Side Effects/New Dosing

Since Hannah had one adverse reaction on Saturday (upset stomach/vomitting), Dr. Capone changed her dosage of the "placebo/Rivastigmine".    We will incrementally increase the morning dosage by 0.1ml every 2-3 days.  The evening dose will remain at 0.75ml.    The idea behind increasing her morning dosage is that we will be able to monitor side effects better than in the evening.  We wouldn't necessarily know if she slept through a grumbly tummy!

Hannah seems not to care about her discomfort on Saturday--she hasn't mentioned it at all.    Clearly she felt well enough to eat all of her chocolate bunny and other non-nutritious treats yesterday!

Church on Sunday

Out for lunch after church--making a hat out of her napkin and pretending to be a sailor

To follow more posts about the research study you can click here.

April 23, 2011

Is it, or isn't it? Clinical Trial: Rivastigmine

Today was the beginning of the larger dose of "placebo".   The dosing had been 0.75 ml twice a day.   Today the morning dose was 1.5 ml, and the evening dose is the regular 0.75 ml.  We're basically increasing her dose by 50%

At 9 a.m. Hannah had her dosage, and for breakfast had a little fruit salad, vitamins (with applesauce) and some milk. She was working on "a big art project", so I left her to her own devices to eat, drink and create.

A couple hours later she came to me and said she didn't feel well.  I was surprised to find that she had only eaten a few bites of fruit and barely touched her milk.  We cuddled up on my bed and chatted a bit.  It was a chilly morning, so cozying up under a blanket was a sweet way to comfort her and sneak some lovin' on my big teen-aged girl.

After a bit she asked for some soup.  So I fixed some for her. She came to the kitchen to eat, but just stood there a minute, made a little gagging sound and said, "I'm going to throw up."  and scurried to the sink. Success. But no fussing at all.

We opted to watch some home movies instead of eating.  (Oh my goodness, she was so cute and little in those movies!!). Hannah was giggling a bit at the movies, and eventually wanted to try the soup. She had a few spoonfuls and decided that was enough.  I suggested a bath.  She took a long one and really perked up.

She was hungry afterwards, so she had soup and some hard-boiled eggs. Back on track 100%. So much so that she was bouncing out the door with James to go see the local professional soccer game this evening.

So, since Hannah has not thrown up in three years (almost to the day, thank you Disney World), and she hasn't been around anyone with a stomach bug, nor am I familiar with any stomach flu that lasts just 5 hours, I am left with the idea that we, Ladies and Gentlemen, have a Side Effect.

This leads us to the high likelihood that she's on Rivastigmine, and not a placebo.

Another side effect of Rivastigmine, is increased language and memory ability. We have been noticing these side effects over the past couple of months, but as I said before, the changes are nuanced. According to Kate, who only sees and hears Hannah from a distance, she's been convinced for months.

The first thing I noticed was that when we were doing Hannah's Language Arts school work. I read a passage of children's literature out loud (working on auditory processing and memory). She listens and then later verbally answers questions about the passage in complete sentences. She never, ever got all the answers correct. I always had to repeat sections of the passage to help her answer the question. Some times I'd have to repeat the sentences four or five times before she'd remember what happened to which character. It was really frustrating for both of us.

We hadn't done that particular part of her homeschooling in about a month. (Have I told you how relaxed I am about homeschooling?  Maybe that's just "lax".) So when she had been on the "placebo" for about a month we got back into the swing of things.  I couldn't believe it.  She answered every single question correctly on the first reading!  And the same thing the next day. And subsequent days. She missed a couple here and there, but it wasn't as if I had to repeat and repeat sections of the story.

Here's another scenario: Today, I mentioned that Hannah's friend Sarah was coming over to play with her on Wednesday (AKA babysit).  I was going to the Picasso exhibit at our local art museum with Catherine (Lois's mom, who, by the way, is forging her way down a long road of grief in a very honorable fashion).

To set the stage further I cannot recall ever mentioning the words "Middle School" nor "Clover Hill". She has seen signs that say these words in front of various schools, but we have never discussed what grades were in which kind of school, nor has she ever entered one of these schools.  Also, please remember that Hannah is a lousy speller, and I don't know that she's ever seen Catherine's name written anywhere.

Hannah:  Oh, I have a friend named Catherine, but she spells it with a "K".

Me, surprised:  How do you know her?

Hannah:  She was in my class.

Me, thinking:  Her dance class?  Art class? Theater class?  Wonder where this Katherine is and why haven't I heard of her before? 
Me:  What class?

Hannah:  My Middle School Class.

Me:  Which Middle School Class?

Hannah:  The one at Clover Hill School.

Me:  I didn't know you went to Clover Hill School

Hannah:  Oh yeah, that was when I was with my other mother.  Her name was Daphne.

Me:  I see.

I didn't see anything except my girl coming up with ideas, memories and imagination, and a spark of something new. (BTW, we do have a Clover Hill High School in town.)   Where did she come up with the Catherine with a "K" idea?  How did she know my Catherine, or even that some Catherines use a "C"?  She has no friends named C/Katherine.   Where did this idea of another mother come from?  She has several friends who are adopted, but we haven't ever said much about the birth mothers other than they weren't able to raise the baby.   What is her brain up to?

It's very interesting.

Let me assure you as well, she is still 100% Hannah, complete with adolescent mood swings strategically aimed towards me.  Bring it on, girl.


Now we await Dr. Capone's return phone call to see what to do next.  The options include upping her dosage more gradually, and/or giving the larger dose at bed time.

To read the next post in this series, please click here.

To read previous posts about the research study, you can begin with my post Baltimore and Research Studies, and then follow the link at the end of each post to get to the next in the sequence.

Post Script:  I completely forgot to mention that several of Hannah's teachers have commented on Hannah's concentration and abilities since January.   Piano and swimming teachers both have noticed changes in Hannah (they've known her for 2-3 years).  Sheena (dance instructor) posted this comment: "And, if I could just add, her DANCE knowledge, technique and performance skills have SKY ROCKETED this year!! I am so STINKING proud of her!!"     Thanks Sheena!

April 19, 2011

Research Study: 3rd Visit

We made another trip up to Baltimore last week.  We knew the visit was going to be short, since this was the "safety visit".  There was no testing (other than the pregnancy test--still so weird!), just checking on vitals and reviewing the side effects (she hasn't had any).

The only thing that I wasn't expecting, or didn't understand from the initial visits, is that next week she will increase her dosage again.   Currently she's taking 0.7 ml of Placebo/Rivastigmine twice a day.   The new dosage will be 1.4 ml in the morning, and 0.7 in the evening.   They want the bigger dosage in the morning so that they can better monitor side effects.  Of course, I immediately think that night time would be better because she'd sleep through any side effects (maybe).   

The main side effect that they are trying to avoid is nausea and gastrointestinal distress.  Increasing the dosage incrementally seems to lessen the severity of the nausea (so the original study discovered).   We'll see.   I'm still assuming she is on the placebo.

That said,  Hannah has been making progress in her school work, and her sentence structure has been a bit more mature and complex than in the fall.   Of course, she's also a young teenager, so I couldn't tell you if it's just a natural growth pattern or if it's a result of the medication.   If she is on the real medication, the changes I see are very nuanced--she's still totally regular Hannah--no big bells and whistles announcing any changes.  I can't tease out any specifics at this point.

Maybe things will be more obvious after she's been on the doubled dose.     I'm still really excited to help move this research along!   And while we were there, I managed to get Dr. Capone to agree to come to Richmond in the fall to speak about current research trends in the Down Syndrome Population!

(if you've missed the previous posts about this research study, you can start here)
(if you want to read more about Hannah's experience in this research study, you can follow along here)

April 18, 2011

Ruby's Mom!!!

Hannah and I have been traveling for the past week, having a great time visiting D.C., Baltimore, Philadelphia, Easton, PA, Princeton, NJ, and D.C. again.   I'll cover the pertinent points later (3rd Research Study Visit at Kennedy Krieger--no big news there).

The big excitement came when we arrived home to an unexpected box, addressed to Hannah.  From Texas, with no return address other than the post office address.


She opened it up and found these:

I finally remembered that Cheryl from Ruby's Life had contacted me to on FB a while ago!  She wanted to make an afghan for Hannah; what color should she make it?    How sweet is that?   

Not only did she make Hannah's beautiful afghan, she also made two smaller ones. 


Hannah wrapped her American Girl dolls burrito style, and then I wrapped her up too!

Thanks Cheryl!  You made my girl so happy!  What a generous commitment of time from a homeschooling mom of nine children!   So sweet.  This blogworld is full of surprises!

April 6, 2011

What's Going On?

Hormones hormones hormones.

At least, I hope that's what it is.

This girl is SO moody.   A few weeks ago, she was in her music lesson.  It's 30 minutes long.   She loves Miss Heidi.   She always goes in happy, and comes out happy.   But on that day, she went in happy, and 10 minutes later she came out in tears.

Through her tears she said she wanted to go to Great Wolf Lodge.   Miss Heidi was surprised.

I was confused.   We went to Great Wolf Lodge months earlier. Hannah liked it, but never really mentioned it again.   And now, suddenly, she was terribly sad that we couldn't go there right then and there.  Bawling.  Sniffling.

I comforted her first.  Got a tissue second.  Cleaned her up.  Deep breath. Big smile.  Go back to the lesson with her wet eyelashes sparkling.

Five minutes later, she was escorted out, again in tears.

This time I gave her the riot act.  She was creating this drama for no reason.   Totally random.

I'm a pretty no-nonsense parent.   I told her that she was acting inappropriately. That she needed to cut it out.  She had to apologize to Miss Heidi for wasting her time, and apologize to me for wasting my time and money.
Which, she begrudgingly did.  Her lesson time was over.

And a silent drive home--her choice; I had said everything I needed to.

While I was enjoying the silence of the evening, I looked up into the night sky and saw an almost-full moon.  It was just a couple days before the SuperMoon.

And I sighed.

SuperMoon.   Super PMS.    That's what it was.  Argh!

At least I knew the reason for the breakdown.

Besides hormones, something else is going on.

It's regular growing-up teenaged tension.

Last week Hannah spent some time at a friend's house while I was out.  By all reports she had a wonderful time. She was funny, polite and enjoyable company. A trip to the dollar store to get materials for April Fool's jokes.  All was well.  Until I arrived to pick her up.   Then she became snippy and grumpy.    Ahh, the power of the parent.  My mere presence is enough to set off a reaction.

It wasn't because her play date was over.  It was because I am her mother and I have the audacity to breathe. This I know because I've lived through it before.  She is my third child after all.  I probably even felt that way myself as an adolescent.

It really is quite entertaining.  Annoying too.

My friend who witnessed Hannah's behavior is thrilled.   She LOVES the fact that Hannah is so typically a teenager.  She is giddy over the idea!  

And I am too!

Except when I'm right in the middle of it.

Hannah has the eye-rolling technique down to a science.  The only part she hasn't figured out is that she should use that technique sparingly and with discretion.

Stepping back from the immediate drama, I can appreciate Hannah's position.  I am thrilled that she's growing up and stirring things up.  It's a sign of independence.

Just writing that sentence brought me back to something I said years ago.  I only recalled it because someone quoted me in an article when Hannah was seven.

 “We can’t wait for her to be a teenager, and cause some trouble,” says Beth L., laughing. “That will be a sign that ‘Okay, we’re on track’.”

I guess we've arrived.  I need to keep laughing.


And on the topic of independence, Hannah is calling the shots these days.  Literally.

After trying to get chicken pox four times--unsuccessfully-- Hannah had a titer drawn to see if maybe somehow I had missed noticing a mild case of pox.   It was negative.  So it was time for Hannah to get the varicella shot.  

(I am not a fan of vaccines, especially 'optional' ones.  But since Kate was hospitalized for encephalitis from chicken pox with 107 degree fever at age 5, I have been watching Hannah closely.  I'd rather she have natural immunity, but I also know how difficult chicken pox is for adolescents and adults.)

So we stopped by the doctor's office on Monday.   In the waiting room, the nurse called Hannah's name.  Hannah stood up and said, "It's okay, Mom.  I'll do it myself."

And off she went.

She came back in about 90 seconds, smiling, with the nurse saying, "She's a pro!"

That's my girl. Growing up in many ways.  Brave, temperamental, feisty, and goofy.

April 3, 2011

Book for First Time Moms

This is my sister's first book!

Regular readers might remember my post last May, when I put out the APB for Christian writers.   It turns out that Christy Sturm, an occasional Shenanigans reader and mother of a son with Down syndrome, is a contributor!  She has 10 devotionals sprinkled throughout the book.   I read them first, always looking for the sisterhood of mothering a child with a disability.  Her entries brought me right back to when Hannah was born.  It's amazing how we all can relate to those early fears and worries, and later, our discovery of the delightful secrets of the extra chromosome.

The other contributors come from diverse backgrounds ranging from a single mother, and adoptive mother, working and stay-at-home moms.  Each day, a compassionate message to hearten a fatigued mother--really applicable to any mother.

This book would be a wonderful gift to a new or expecting mother.   Daily encouragement, scripture and prayer, one short devotion a day--just enough for a busy mom to read in a minute or two.

I just checked Amazon, and they just re-stocked ($13.31--buy two and get free shipping!).  Or, for you Kindle fans, it's always available ($7.99):  Your First Year of Motherhood