Another Chapter- and a question for all iMoms

Tommy is now 3- and has his own thoughts, feelings, ideas, personality...  as a mom, that's both awesome and sad all at the same time.  I love seeing him become a real person- I love watching all the kids develop, but with each new turn, it's one step towards peeling away from me.

Tommy has  a more willful personality than his sisters- sometimes I think it's because he is a boy, or because he is spoiled, or because he's the 4th, or maybe even because he's got this little "eye thing".  I'll probably never know.  What I know is that he has been the kid who has wanted to dress himself earlier, pick out his own clothes earlier, and has definite opinions on everything Tommy.  It's been a blast.

This new little person has feelings, too.  I've described how he is ready and willing to tell people about why he wears a patch- in fact, I have prematurely patted myself on the back quite a few times for how "maturely" he handles questions.  His daycare provider told me the other day that another little boy asked Tommy why he wore a patch, and Tommy simply explained it.  (Ah, proud mom, we're doing good!)  We are out and about and someone calls him a pirate and I refrain from punching them.  (Yay!  Good job mom, show Tommy that none of this matters!)

But- this celebrating may all have been premature.  I admit that I dread the day he leaves the cocoon of our home daycare.  It's small, great provider, great families.  I do see kids stare and ask questions of their parents.  I do know that kids are honest cruel, sometimes unintentionally.  I do remember what it feels like to be picked on for being different.  I dread that Tommy will have to face all of that and there will be nothing I can do.

I just never expected Tommy to care so soon.  We were in our small(ish) town at the local bakery.  We walk in and a little girl shouts "Hey, you look like a PIRATE!"  This isn't the first time, won't be the last.  I look at Tommy and say "Say Arrrgh, Tommy!"  He hides.  This kid who can talk anyone's ear off, hides between my legs.  The girl didn't stop.  Her parents even joined in to say "Is he wearing a costume, how silly!"  (They said this to the little girl, I presume they knew that a polo shirt and a patch do not equal pirate costume)  Another lady in the shop seemingly tried to cover up and talk about her son's eye issue and how her little boy would have loved a patch.  But the family didn't stop- more pirate talk.  I honestly didn't know what to do.  I usually encourage Tommy to laugh it off or play along, but he was clearly... different about it this time.  I stayed silent myself- I found myself wanting to tell them he wears a patch for a reason- to make his eye stronger.  I wanted to defend him, I wanted to get my donuts and get out.  When we left, the girl shouts "Bye pirate!"

We get out the door and Tommy says "I NOT a pirate!"

Heart sinks.  Heart breaks just a little.

I ask if the little girl made him feel say.  He nods.  Heart shatters.

We talked about ways he could control the situation.  (Sounds big- but really I just told him that if someone says something like that to him, he could just say "I'm not a pirate, I'm TOMMY!")  We practiced this for a few minutes and he cheered up.  I showed him the #camopatchkids on instagram- to show him that there are lots of kids like him who wear patches and glasses.  Austin's pic made his day.  (I love social media!)

But fellow iMom readers- what have you done?  What have you seen?  How have you handled the moments when kids realize that other kids think they are different?

How can I make this cute little face never be sad about that again?

Study Patient

I enrolled Tommy in an ophthalmology study a few weeks ago when he first developed high ocular pressures.  Tommy is exceptionally patient with eye exams and all other matters of poking and prodding.  (I think this is related to the fact that he is kid #4 and has endured countless hours of poking and prodding from his 3 older sisters)  Our doctor said the study was low on kids under 3 years old, since most are not super-compliant with eye exams, so he'd really like Tommy to be a part of the study.

New glaucoma suspect- pressure of 23

This particular study is designed to compare 2 different eye drops in children.  Neither of them carries an FDA approval for use in children, however, due to extensive experience with one (timolol), over time, it has become standard therapy for pediatric glaucoma.  This is sponsored by another company hoping to gain FDA approval in pediatric patients for their drug.  (I'm intentionally not mentioning the other drug)  Most studies offer their subjects some type of compensation for study visits, usually a nominal amount of money for gas or a gift card.  This study has a generous compensation, however, the real reason we decided to enroll Tommy is that we get to keep a really close eye on his pressures.  There are 4 study visits (baseline, 2 weeks,  6 weeks, and  12 weeks).  At each study visit there is a complete eye exam (with pressure checks and measurements), blood pressure, and heart rate measurements.  At baseline and 12 week visits there is also an EKG measurement.  The EKG, blood pressure, and heart rate checks are likely due to the effects that timolol can have on the heart if it gets systemically absorbed.  Each study subject is randomized to get timolol or this other drug.  Since I know that both drugs are proven to work in glaucoma (even if it is in adult patients), I felt comfortable.  I would not have joined a placebo controlled study, I was paranoid enough about this new diagnosis!  We had to instill drops into his eye twice daily- at set times 12 hours apart.  That part is more challenging that I thought!

Eye drop technique is important in these drops, a significant amount can be absorbed if it isn't administered correctly.  I was surprised that the study coordinator did not go over this with us extensively.  In fact, we had no instruction at all!  Tommy's dad and I are both pharmacists, so we know the proper way.  You need to create a pocket with the lower lid, put a drop in, then put pressure on the corner of the eye where it meets the nose for ~30 seconds to 1 minute to minimize absorption.  We had this down, but I do wish this was more widely circulated.  (I'm thinking about creating a video for another post)

Pressure is 34- yuck!

 

I love knowing the eye pressures so frequently.  I'm happy to report that Tommy's pressure is down to 16 mmHg in the eye that has glaucoma.  Awesome news- since his baseline was ~17.  I watched it steadily decrease, and felt a small victory each time it was a little lower.  Since he received the diagnosis at a pressure of 23, and the baseline pressure was 32, I am thrilled.  The only thing I don't love is that our PO is a little more focused on completing all the study paperwork.  There are a lot more boxes to check, t's to cross, and i's to dot than our normal visits.  He spends a little more time staring at the computer than usual (side note, this is a problem happening in all of medicine that has nothing to do with study visits, but that is for another blog!)  We still love him, but  I will be a little glad to get back to a more Tommy-centric visit.  Tommy is a champ- but these visits take a little longer than usual, and he is a little antsy by the time it is all over.  His backpack full of tricks only lasts so long.

Pressure is 24!

Before we started the study, Tommy was put on timolol, 1 drop twice daily.  He was only on it for a few weeks, but it didn't appear to be working.  His initial "bad" pressure was 23, our PO's low threshold for treating.  At the baseline study visit, Tommy's pressure was 34 mmHg.  I was panicking- and when the PO didn't mention it, I was just a little more than stressed out.  When I asked him about it, he really and truly was not worried.  Apparently, the amount of cooperation from a child really matters in these pressure readings.  If you squint at all, the pressure increases.  Even good patients have difficulty with this.  By the second study visit, Tommy and I had a trick.  If I got him to focus on an object at the back of the room (our PO has movies playing) then he was so busy trying to spot what I spotted, he didn't squint, and the pressures were better.  By the 2nd visit, pressure was down to 24, and I don't know if this is study drug effect or good technique.  At the 3rd study visit, it was down to 16- and I don't really care if it is study drug or technique- it's better!!!

Happy day!  Eye pressure down to 16!

Yay for good pressure readings!  But now is the next dilemma- which study drug is he on?  He had started on timolol, but the pressures increased.  That leads me to believe that it could be the other drug.  I asked if the study would be un-blinded at the end (and since the company reached enrollment, the study is now closed).  The study coordinator is looking into it.  I'm thinking he is on "the other drug".  That drug is usually given only at night.  While we have a bottle for morning drops and a bottle for evening drops, Tommy only complains about the evening drops "it hurts".  (Those have to be some of the saddest words your child can say to you as you are doing your best to help him).  Hopefully they will un-blind it so we can continue on this drug that is working!

What is it really like though?  I wish I could ask Tommy.  He really doesn't seem to mind the visits- he gets a lot of attention from the assistants and the study coordinator.  The love him, and he loves to show off for them.  Last time he drew them all pictures, which made them melt.  I'm as proud as I can be- he tolerates all of this so much better than I could ever hope for.  Every morning and every night I poke in his eye to get the contact in or out, put drops in, patch him... and all he ever really says is "it's uncomforbull" or "it's gonna hurt!", occasionally, "no, mommy, no"  But no tears, no screaming.  Little trouper.  While I do realize that a lot of kids are going through a lot more, it is still never easy to see your baby go through any discomfort.

The following are just some random cute pics!

Ring bearer Tommy! (or as he said, "I not ring bear, I ring BOY"

Partied out.


 

Tommy selfie

Catracks, Concacks, and Eye Drops

Tommy is almost 3 now.  He talks non-stop.  Since he is the youngest of 4, he talks LOUDLY non-stop.  He has become incredibly attentive to things I say.  I first started noticing this when he started, ahem, shouting at the cars to "go fatter" and "get outta da way" and "learn to drive dot!"  I have NO idea where he hear any of that.  I'm blaming his dad.

He has also heard me explain his story a few times lately.  Apparently we've been getting out a bit more and seeing new people, since I've had more "What's up with his eye?" lately.  Or "What's up with the patch?"  I still have a hard time not answering some smart aleck response like "oh, it's just a sticker" or "What?!  What is wrong with his eye?"  But I don't.  Lately, Tommy has been starting the conversation with older people.  It goes something like this!

Older person:  "Hello there little man, how are you?"
Tommy:  "I wear glasses!  I have a catrack when I was borned.  I wear a concack and glasses and patch.  I have 3 sitsters.  I have a dog named Riley.  He peed on the floor.  This is my mommmmmeeee."  (I could go on, he does- but I will spare you)
Older person:  "What?!"

Older people have forgotten toddler speak, so I need to repeat it.  It makes me laugh every time.

Cataracts suck!

Eye update.  We had finally made it to 6 months between eye appointment visits.  I was woefully naive in thinking that we were in the clear.  Smooth sailing from here on out... you know, regular visits just to see if he needed new prescriptions, decrease patching,  easy peasy lemon squeezy.  Wishful thinking, I know.  I just was on this high of no news for so long.  Reality check.  Tommy was born with PHPV.  In general, this just sucks.  The vision screen was a joke.  Tommy was pleasant, but thought it hilarious that he called every picture a car (the old fashioned phone- a CAR!, the house- a CAR! all while grinning at the technician).  She had the gall to call his vision 20/300.  Really?  He wasn't even looking at the screen people!  Not to mention the fact that the pictures are pixelated pictures of things like a car, a house, a duck, an old fashioned car, and a dial telephone.  I'm not entirely sure my 6 year old could recognize these things!  But- we all know the vision screening at this age is just a stalling technique while we wait for the doctor.

I just love this shark hat.

We go to a teaching institution, so we see an ophthalmology resident first.  She does lots of things to Tommy's eye.  This wasn't to be a dilation visit, so it was going pretty quick.  She tests his pressures with a tonometer pen- "23" she says, "great!"  Umm, no, not great. So I say "Really?  That is higher than his usual- he runs about 17."  She says, "oh, we've been having trouble with that tonometer all day, let me get another one."  Second test, "23".  She says, "oh, it's higher, but not crazy high."  I swallow the scream in my throat..."yes, but it is higher, that is concerning." (Mind you, I'm not upset with her, just screaming in my head that this couldn't be true!)  So, she gets another tonometer- same result.  She then gets another tonometer- this one needs eye numbing drops.  Same result.  23.  It's official, the pressure is high.  Now she is more concerned and dilates his eye, and sends us back to the waiting room to let the drops work.  Can I just brag that Tommy was a rock star through all this?

Can we go home?

4 different teonometers, 4 different pressure checks, 2 different eye drops, contacts in, contacts out, 3 different people poking and prodding... and not one tear out of the little man.  Towards the end he kept asking to leave, but overall, much better behaved than me!  We also learned that his eye is drifting more than before, but we will still "keep an eye on it".  Those have to be some of the most frustrating words strung together that make little sense for his obsessive iMom.  I keep an eye on his eye EVERY DAY.  I obsess EVERY DAY.  To say it is getting worse and that we are just going to watch it is KILLING ME.  I guess I have something new to obsess over.

So- we begin a new adventure.  His diagnosis is "Glaucoma Suspect" (this is a real medical term!).  Which makes me chuckle- I picture some villain lurking around (think Scooby-Doo Villain).  We started drops last night so he doesn't become a "glaucoma convict".  Heehee.   We will be starting a study medicine in a few weeks- we agreed that he would join this study, mostly because it means frequent eye visits.  I can watch this pressure like a hawk!  (I looked, they don't sell home tonometers)

He is a trouper- I cried the first time I put the timolol drops in.  I want to kick and scream and yell about how unfair this all is.  He simply says "drops all done!"  I stress out about the side effects of the drops- he is happy that he gets his contacts out every night.  I'm mad at cataracts and PHPV- He happily tells people about his catracks and concacks.  Who knows, now he may even tell them about his eye drops.  I need to adopt his attitude towards all this.  I know it could be worse, I know, I know, I know.

My little superhero.

Dear Adoring Fans

I love all the "Dear XYZ" posts I've seen.  I'm jumping on board!

Dear adoring fans,
Hello!  Yes, I wear an eyepatch, isn't it cool?  My favorite one is the one with dinosaurs, I like to roar like a dinosaur.  Guess what?  I can see you, even with an eye patch.  These glasses?  Yes, they are real, yes, they work, and no, they aren't broken, it's called a bifocal.  Oh, and I can also hear you, so can my  mommy.

Check out  my cool shirt from Eye Power kidswear!

When you point and stare, I don't really mind, I know I'm cute, you can't help but stare.  I love all of the attention.  If you are a grownup, mommy thinks you are being mean or rude and she says it hurts her heart every time.  Sometimes she says not nice things about you... she forgets that I can hear sometimes, too.

Don't make my mommy sad!

She likes it when you ask what happened, she knows everyone is curious. She doesn't even care how you ask, although she really doesn't like it if you asked if I lost my eye.  She has a story all lined up, it's almost the same every time.  If I cared enough, I could tell you the story word for word.  But, I'd rather roar at you or sing or laugh or cause trouble.  My sisters know the story and often add things if mom skips a part.  Here is how it usually goes:
     Adoring public:  "Oh, did he hurt his eye?"
     Mommy:  "No, he had a cataract when he was born.  It's just like people get when they are old, but he was lucky enough to have it when he was born.  It's really rare.  Since you have to learn to see at birth, we have to make him use that eye, which he'd rather not use.  You are seeing the "bad eye" and we patch the good one to make him use the bad eye."
Now- mommy is from Vermont and she talks REALLY fast, so she ALWAYS gets this part out.  Sometimes your eyes glaze over.  That makes her mad, if you asked a question, you'd better listen.  I hear that a lot in our house "you need to listen!"  Apparently you all have not been taught that by your mommies.  Lucky. 

At least PRETEND to listen!

Some of you ask more questions.  This is good, you listened (you must have had good mommies and daddies!) and you make my mommy feel like she did OK by me.  She will answer anything- and seems to like to talk about it.  (borrringg!)

Borrriinnngg!!

What makes her really really mad and sad and say not nice things, is when you forget we can hear.  Lots of you try to explain to your children that I have a boo-boo on my eye.  This really makes her mad when we've seen you around town and have exchanged waves or small talk.  Please, just ask my mom.  She will be happy to explain (see above!)  She's also pretty good with kids, she has 4 of them, she will happily explain things to your kids.  She also has some experience explaining things to people, she did that in her job for a while.  Do you really think it's better for your kids to think I have no eye or a bloody eye behind my patch?  Think people, think!  That is scary stuff!  My story is much more benign.

Also scary stuff

Oh, and my mom doesn't really like it when you pretend you know what she is talking about when she knows you don't.  When you tell your kids (or spouse or friend) that I probably have a lazy eye, she is annoyed.  I agree!  I am not lazy!  Ask my mom!  I don't like to sleep AT ALL!  However, my mommy will politely listen as you tell her about your sister/cousin/nephew/great-aunt twice removed and how she had a lazy eye and is JUST FINE NOW.  First of all, I am already fine.  F.I.N.E.  Second, in many cases she just explained what was wrong with me, and lazy was not a part of it.  My mommy usually smiles and nods (and mumbles under her breath after you leave).  Again, that listening thing.

Best horse ever.

 

Don't worry if your kids say silly things, that doesn't bother mommy.  Usually your adoring children point and say "look mommy, he has a sticker on his eye!"  Really, I know you are just finding any excuse to point out how ridiculously cute I am.  Admit it, you are also a little jealous that I get to wear a sticker every day.  Do your parents let you wear a sticker on your face in public?  Ha!  Didn't think so!   Kid questions make my mommy smile.  Especially when your mommy acts mortified and rushes away to another aisle in the supermarket.  Mommy knows you can't control what comes out of kids mouths.... and be honest, you were thinking the exact same thing!  If you are within earshot (before your mommy rushes away), mommy will tell you that I patch my good eye to make me use my bad eye.  She may say it loudly so your mom can hear as she is running away. The last time it happened, we saw you and your mommy in every aisle.  Good job mortifying your mom, we heard you say something new each time!!  My mom actually laughed out loud a few times.   (I think this is passive aggressive behavior, she should really work on that!)

So that is my story.  I hate my patch and hate my glasses, but mommy says I have to wear them.  I will have to wear them until I am 8 or 9, she says.  That is old, but not as old as my mommy.  So please, just ask, don't point, don't stare, and for Pete's sake, LISTEN if you do ask!

Love,
Tommy

P.S.  Could someone please tell my mommy that it is completely OK to live on Hostess Donettes?  Why does she insist I eat anything else?

Some Resources for Congenital Cataracts, infant contacts, glasses, and patching!

I've been getting requests for ways to "plug in" to other people going through the same thing.  I remember scouring the internet for any snippet of information I could find, so here is a compilation of things that helped me through!

Parent Blogs:  

In general, these tell about family life surrounding having a child with cataracts.  Many talk about day to day struggles with patching, contacts, glasses, and also about family fun!  These blogs help me survive the ups and downs of what we go through.

Here are the ones I follow regularly (forgive me if I missed any, I'm sure there are more!)

A boy. His brother. The mischief they find. http://thegloverfamilyblog.blogspot.com/

Epis, Patches, Inhalers... Oh My! http://3kids1wish.blogspot.com/

An Ounce of Luck and a Pound of Faith http://ounceofluck.blogspot.com/

Vision is a Gift http://visionisagift.blogspot.com/

See the Distance http://seethedistance.blogspot.com/

 Patches, camo and other random thoughts  http://patchesandcamo.blogspot.com/

There are many more beautifully written blogs out there by moms who have children going through similar issues.  I omitted a few who have either not blogged recently, or those who have changed the focus of their blog away from congential cataracts (etc) and more towards family life or interests.  You can find a few more in my profile and I do urge you to check them out!

Websites:

Little Four Eyes:  This covers issues with any kid in glasses. http://littlefoureyes.com/

  *They have a great post about other blogs:  http://littlefoureyes.com/2012/01/16/new-page-blogs-about-childrens-vision/

  *They also have a Facebook page:  https://www.facebook.com/groups/littlefoureyes/

Child Cataract Network (UK site) http://www.childhoodcataracts.org.uk/index.html

Bausch & Lomb:  I included this, because if you have Silsoft lenses, you will contact them at some point!  http://www.bausch.com/en/Our-Products/Contact-Lenses

Boston Children's Hospital:  Not where we go, but they have a GREAT video on how to put in contacts... I watched this a million times when we first started!  http://www.childrenshospital.org/az/Site666/mainpageS666P1.html

Simulation of vision:  Really cool site.  http://www.billauer.co.il/simulator.html

Facebook Pages:  

Closed groups: You need to request access, which is easily granted, but this makes it a little more private.

People with Persistent Hyperplastic Primary Vitreous (PHPV) Unite! https://www.facebook.com/groups/58073768937/

Aphakic kids:  https://www.facebook.com/groups/139232330344/

Aphakia Group:  https://www.facebook.com/pages/Aphakia-group/121745891227537

Fun Sites (Mostly promotional):

Peeps Eyewear: https://www.facebook.com/peepseyewear?fref=ts

Eye Power Kids Wear:  https://www.facebook.com/eyepowerkidswear?hc_location=stream
  *They also have a non-facebook website:  http://eyepowerkidswear.com/

Little Four Eyes Marketplace https://www.facebook.com/groups/359677530776131/?fref=ts

Instagram:

Check out #Camopatch kids!  Many parents (and some siblings!) will post pictures of their kiddos in patches on Sunday.  Camo patch if you have any!

Patches:

See earlier post:  Fun Eye Patches

Support Groups:

 Yahoo Aphakic Support Group.  You'll need to request access, but this is a great resource.  You can post questions, answer questions, or simply read about what others are going through.

Little Tommy (just because I can't post without at least one picture!)