Eye Surgery

November 11, 09
Right Eye-muscle loosening

Asking Science for a Refund

On our recent trip to the opthamologist, who after another 2+ hour wait remains confused about why Elliot's eyes made such a dramatic downturn three months post-op, we were encouraged to have another MRI done.

And exactly WHY would I subject that child to another MRI?
Deny him food, put him under, and have him put in a machine that makes the smoke monster on Lost sound sheepish because he might have some kind of flare up that causing these changes?
Can you DO anything about these changes?
Can we prevent these flareups?

If you're just fucking curious, you'll have to poke around on some other CMV kid, because my child is not a science experiment, and we have not donated his body to your cause.

Why can't doctors of children with a host of specialists coordinate care and actually TALK to each other? A quick call to his Infectious Disease doc and/or neurologist would tell him all he needs.

So what to do now? I'll wait two weeks (and hold my son down while I put on his glasses), then wait two hours to see this doctor again, and ask him if he thinks my son has a brain tumor or some other legitimate reason for an MRI. And I'll wait to see him again because I have no choices on who to see. He is, all at once, the best and worst doctor in the city.

Letting myself off the hook

Well--

There's no news I've found about the Hep A vax that would have kept me from immunizing Elliot.
And while that helps ease my conscience, I'm still struggling with fear...my fear that he is losing his eye sight.

Today I'm waiting to talk with his optham. re: vaccination and what glasses will/might do. And I'm waiting to talk with his pediatrician about CMV, and if it's possible that it's active now, and if that might mean a change in some of his functioning.

In general, I feel like there is an elephant sitting on my chest. And I don't want to ask him to move. I want to ask him to just move further up, and finish me off, instead of smothering me, a bit at a time.

El's Eyes

Hi folks-

I'm just brushing up on postings a couple of months back on kids with calcifications and reactions to immunizations. Abby, it seems like Jack's delays were the most intense that were shared.

We've recently had an experience that may be due to immunization, and I am searching for potential causes. Elliot (3.5, microcephaly, unilateral hearing loss, "wandering" eyes, CP) has had all his vax "on time" w/o any concern from any doctor (or uninformed parent). Last week we had him vaccinated for Hep A in preparation for a family trip to Central America. He'd visited the opthamologist just before because of his strabismus...Followed up w/ the optham. a few days post-vax and there's a significant change in the wandering, prompting some immediate action to look at glasses and discuss his eyes in a more intense way.

We've noticed increased wandering, and tonight, at bedtime, Elliot told me "My eye hurts." When asked if he wants to go to the doctor, he said, "Yes." My son's gone through so much and has NEVER told me something hurts. I feel tremendously responsible and guilty for having him vaccinated despite having read this. Elliot's never had any adverse reaction previously to vax, we've never been warned by any docs...I'm wondering if anyone out there has seen any changes in their child's vision like this (strabismus/accomodative esotropia), or Hep A experiences, or post-immunization experiences like this one.

Thank you,
Emmy in New Orleans

El's Eyes

http://www.umsl.edu/~garziar/factsheets/factsheet_accomesot.pdf

What's happening?

Follow up with Dr. Ellis yesterday.

Elliot's esotropia (a form of strabismus) has worsened since last week's visit. This tendency of one eye to act independently, causing his brain to discount the input from the wandering eye rendering it useless over time has been an issue for a few years...we tried glasses, then surgery (for that issue as well as another), and it seems that something has changed.

We've noticed increased wandering in the eye over the last month.

It's this recent change over a short period as observed by his opthamologist that has me wondering-
1. Is this related to the Hep A vax Elliot had for the Honduras trip? Other CMV moms have reported changes in their children's health post-vax (seizures). This has never been our experience. Nor do most children get Hep A vax, it's a precautionary measure for the trip.

2. Is this related to a flare up of the CMV? Elliot slept terribly last night, threw up his sushi after dinner, and is not at his best right now. Is the same reactivation of CMV that is causing the vomiting also causing other parts of his body to react differently? Is it possible that this change in his eye sight is a temporary weakness (like the one we've always noticed when he's tired)?

And so, we're back to getting glasses. Elliot is at risk for losing his eyesight, which I think was always the case. But I'm feeling angry, and tired about this right now. And quite guilty.

Should I have researched Hep A/vax in greater detail with the CMV community and made a different choice? I feel the burden of being the family researcher, and I'm not very consistent about it. Kevin will never do this kind of thing, something that I both love and hate. Last night, struggling with my feelings, I thought, Might it be my fault that Elliot loses his eyes? Fuck. I feel a tremendous amount of responsibility, and like most of this, we'll never know what's causing the change in his eyes, so I'll add this to my guilt cocktail.

Archive the appointments

For our records:
March 24: appointment with Dr. Wong, Neurology, follow up in 6 months (Sept):
Elliot is doing amazingly well. He and Dr. Wong had quite the conversation, and he was even reprimanded for his "sleep walking." Dr. Wong is very impressed with Elliot's progress.

March 27: appt. with Dr. Hyman, Gastroenterologist
Concerns over Elliot's vomiting occasionally. I want his stomach checked out for possible CMV lesions, or the possibility that the reoccurance of CMV results in the throwing up episodes. Call Dr. Hyman after 3 days of repeated vomited for admittance to hospital for endoscopy.

March 31: Dr Ellis, ophthamologist
Routine check up. Noting some wandering in the eye. Return for dilation. Possible need to explore glasses (again!).

April 6: Dr. Gorman, pediatrician, Hep A vax for Honduras trip.

April 9: Dr. Ellis, ophthamologist
We'll see. Or at least, I hope we'll see.

Notification

I thought I'd be notified today about our top choice for Ana's kindergarten, but lo, the letters are only MAILED today. Argh!

Our big news today is that Elliot's hearing in his left ear is the same as it was when he was 6 months old. That is something to celebrate indeed. It really put my kinder anxiety into perspective for me.

Here's to more good news?

Elliot's Hearing

Test- inconclusive.
His ear drum has "sucked in," possibly a result of the fluid in his ear two weeks ago.
This means the test is showing a mild-moderate hearing loss.

Although I don't detect a great shift in his ability to hear us, all my recent CMV connections and reading has me believing that my son is losing his hearing, and like so many others affected by congenital CMV, he will lose all his hearing at some point. All my preparations will assume this to be the case (I originally sought Br1ght school out for this, and somewhere along the way, got used to the idea of a hearing child with developing language...)??

We have another ENT appointment in two weeks to look at the eardrum, and see if it's OK for another hearing eval.

Honestly, I am not hopeful.
About the test.
I am eternally hopeful about my son. Despite every challenge, he is full of love and life. Stay tuned.

ENT visit

So after some gentle pressure from Ms. Gwen and Ms. Gladys, I decided to put the grant down, and get to the ENT appointment...between my root canal, breast feeding, and therapies, for some reason I didn't think I could make it. They made it clear to me, after hearing my concerns, that I needed to get myself there.

In short,

• The mucus/throw up thing is thought by the doctor to be an allergy issue. This, even though El's been taking Claritin for the past 2 weeks with no significant difference. We will now try Singulair. The doctor took a good hard look at El, and said, "He looks like an allergic kid." ? What gave him away? THe snot? The dark circles? The drool? Help us the eff out, please!


• El's tube in his left (good) ear has come out, and he has fluid in the ear (courtesy of the tympanogram). We have drops to relieve the fluid, and after our follow-up, I imagine we'll schedule another surgery to replace the tube. Have you seen El in a hospital gown? I just hate the whole child-on-drugs thing, whether it's anesthesia or ADD drugs, you name it.

slightly drugged up here for tubes, round 1 in July 07

• And after forcing the issue because the doc doesn't let me finish most sentences (ARGHHHH) we will be seeing a pediatric GI to be sure that there's not food where it shouldn't be.

I'll be looking for

-decreased mouthing

-better sleeping.

Stay tuned, True Believers. Our adventures are far from over!

Because I'm the Mama

Concerns about Elliot’s Health

Hi Dr. C-

Despite the supposition that Elliot suffers from gastric reflux, I remain concerned that he has some serious issue that is remaining undiagnosed and untreated. Unfortunately, I’m unable to attend this important visit with you today, but these concerns have me nervous and scared. I would like you to please consider and explain the causes to the following symptoms:

-Pulling on his right ear
-Significant, fairly constant mouthing of his hands (fingers deep in his mouth) or other random objects. Elliot mouthed objects until age 2.5 or so. This let up until his third birthday (around which time his baby brother was born). His OT wonders if there is an ENT health issue/pain that is causing him to do this.
-Chronic mucus from the nose. Almost constant.
-Wet, chesty breathing (almost constant); affects his speech and ability to eat comfortably. Elliot has a very hard time breathing at night, even with a humidifier.
-Occasional vomiting of all food in the stomach after a mucusy cough (we know the sound that preceeds this mucusy vomit).

I want to know:
1. Is it possible that the swallow study (that he responded poorly to) missed something? Could my son be slowly aspirating due to food being improperly channeled to the lungs?
2. Should we see a GI specialist?
3. What are the possible medical causes for the increased constant mouthing?
4. Are there other doctors who we should see to learn more about what is making our son so uncomfortable?

Thank you in advance for answering each of these questions. Any of this that you can write down, I would appreciate. I thrive on information and my husband is rather succinct.

Thank you,
Emmy

-----

Any ideas from my blog readers? Please pass them on. The visit is on Thursday.

Elliot's eye surgery

Elliot survived:

• 2 weeks without dirt--backyard play, sand, etc.
• 2 weeks without a proper bath
• 2 weeks without AbeonaHouse outdoor time
• 2 weeks home with mom (leaving school at 11 each day)

Mom survived the fear that water or dirt or sand in his eye could result in loss of his vision. What a living hell that was.

And it was worth it. His left eye shows no sign of overstrain, and his right eye is moving slightly, but he's self-adjusting. The danger of his eyes moving independently was that his eyes would communicate to the brain to ignore the input of either eye, rendering it useless. As a result, Elliot is moving well, and it appears his depth perception is more accurate. We're keeping our eyes on it, and will see the good doctor again in January, and again 6 months post-op.

And speaking of the good doctor, I finally had to ask the man (at 7:20 for a 4:20 appointment) what the problem is with these appointments (we've waited between 2-3 hours at each visit). He was sheepish, and clearly embarassed to be told about his persistent problem. I really love this man...he's knowledgeable and exceptional, and I love how much he obviously loves kids. Besides, he's one of two pediatric opthamologists in town. And we've tried the other one. Punctual, but sucked. How long wouldn't we wait for our child's eyes? I'm wondering when we'll say enough is enough.

In the meantime, it's hard to stay angry, when I look in my sons eyes. Thank you, Dr. E.

Elliot follow-up

My internet is acting up, so email is not the best way to get in touch with me these days. I've managed to steal a few moments while the server is up...

Elliot is doing GREAT! Kevin and I both claim to see marked improvements in how he moves his body, and uses his eyes. He's been cooperative in not rubbing his eyes, in the nightly applications of ointment on the eyes, and not being able to take a bath or stay at school past 11. This kid is such a champ, guys. I don't know what he's made of, but he consistently impresses me with his spirit.

I'm really enjoying my time with him while Ana's at school. He and I were in desperate need of a "retreat" together. I'd been struggling with him in the months leading up to Ollie, and the month immediately after. But it seems we're over the hump, and Elliot appears to be in another developmental spurt.

I'm a bit behind, with Halloween, Ollie's 6 week update. We'll see if I get around to that.

Elliot's Eye Surgery

Wednesday at 10 am.
Please have Elliot in your thoughts and prayers.
Both eyes will be operated on.

He'll be home with me for two weeks following to avoid dirt or water in the eyes.

Hopefully after this, he'll be able to see better, walk better, and even play and create better. We're hopeful that this is the right thing for him.

More tomorrow.

Specs

On Tuesday, we had our first visit with the new pediatric opthamalogist. His name is Dr. Ellis, and he's the head of the department at Children's Hospital. I'm trying to give all the details because you should write his name down, and keep it just in case you ever need an amazing doctor for your little one. He was fabulous.

Can I say that in the first 20 minutes, we learned more from the nurse about El's eyes then we have in 2 years of visits with what's-his-name? This doctor structures the visit to get as much information as possible. It's a 2 hour visit (yes, even the first one), and first, the nurse conducts a series of tests, pre-dilation. Then, El's eyes were dilated. He was so cooperative that the nurse asked if we were sure he was two! After 45 minutes, the nurse came out with some cool looking camera, and looked at El's eyes. When she was sure he was ready, they showed us into Dr. Ellis' office promptly.

Dr. Ellis was a grandfatherly looking sort, with a warm smile. He was accompanied by two interns. I was immediately impressed with the rapport and teaching I saw happening from the doctor. He examined El's eyes for about 10 minutes, and then explained to us what he saw. Elliot has 2 issues happening with his eyes- vertical and horizontal ones. Vertically, El's eyes tend to wander inward when looking at an object upclose. His eyes separate as he fixes them at an object in the distance. Secondly, his right eye is higher than the left, and when he gazes to the left, this creates double vision, and he tilts his head to compensate. He then also chooses which eye to look through. What a lot of work just to see! This is called 4th nerve palsy. The muscle in his right eye that should be tempering this floating upward isn't as strong as it should be. This could be repaired through surgery, but the combination of the issues creates a different issue.

And so, Elliot is getting glasses! as a first attempt to treat this. First we'll do single specs. After 6 weeks, we'll go to the doctor again, and see how the glasses are affecting his eyes. If they aren't working, little El will get bifocals! If that doesn't work, then we'll talk surgery.

The doctor must've thought we were off our rockers. We were laughing and carrying on. So relieved to finally know something about Elliot's eyes, have a possible course of action, and a doctor we can work with through this.

And, quite frankly, I can't wait to see El with glasses. Can he possibly get cuter? I know it will be a whole new management issue...Kevin wore glasses and had eye surgery at age 5---and his glasses frequently ended up "lost" or in the toilet. I'm wondering how Elliot will respond to these.

In any case, this is great news for us, and we're thrilled to see if we can help Elliot adjust to these issues, now that we know what they are!

Neurology Update

Elliot had his 6 month Neurology visit today. This is usually the appointment I dread the most...maybe it's the residual pain from our initial visit, or the lenghty wait room wait (usually 2 hours, then another hour in the actual room) or the fact that despite being a Children's Hospital, CH doesn't have wait rooms designed with children in mind, unless a TV is supposed to count. Or maybe it's El's cynic of a neurologist, although the more I learn about CMV, and the more I watch and learn from El, the more I realize his obligation to paint the picture of El's future with all of the possibilities...

The good news is our visit today was actually pleasant. We waited a mere 10 minutes (his first appt of the day), and about 20 in the room. The nurse who weighed, measured, and took El's blood pressure was a sweetheart, and gave him a zillion stickers. And our visit with Dr. Wong was pretty comprehensiveand positive. He seemed enthusiastic to see Elliot, and noted his growth and progress with, dare I say, optimism. Some of what we learned today:

• The loss of Elliot's hearing in the right ear was viral (not due to brain damage incurred in utero), and he has likely shed the virus (as determined by our pediatrician as well); therefore, it's unlikely that he will lose the hearing in his left ear. This doesn't effect our "testing every 3 months til he's 3" plan, but it's certainly good news.
• The generally moderate tone that we see in El's left hand and foot from the cerebral palsy may have the tendency to tighten as El gets older and goes through rapid growth spurts. It's important for us to keep him loose, and keep stretching him out. His PT who came to school this afternoon thought that this was really a non-issue.
• We only have to visit the neurologist once a year now because El is progressing so nicely! Yay! This is good news. We'll keep up with the preventative and observation visits with our other specialists, but I'm glad to cross an appointment of the list.

On our way out the hospital, we made appts for our 3 month hearing follow-up and the second opinion on the opthamology visit. I'm really hopeful about this visit. Each visit lasts between 2 and 3 hours because he comes in to observe the eye pre-dilation, and schedules the other parts of the exam after that. This is a standard practice, people! He's already better than our current guy, and we haven't even seen him yet.

We still have a visit with Thing Number 2 about El's eyes next week. We'll see what he thinks, but I've already kind of written him off. Does anyone out there know the protocol in seeking patient information for a second opinion? I'd like to know how to do this without any wierdness.

In other El news: it's likely Mr. Smarty Pants will be kicked out of the school for the deaf. He's meeting all their goals for him and has so much speech that they've dropped doing signs with him. This semester's goal was for Elliot to use three word sentences. He's at 5, with some wonderful subject-verb-objects, like: "I want more kisses," and "I want to go with Morgan." It's funny how we receive this news. I'd be happy for him to stay until he's five, but him not needing the services is supposedly a good thing.

And he's beginning his annual evaluation tomorrow. This process usually requires 3 visits of 3 hours with an objective evaluator (Battel test). In the month after that, we can expect the evaluation from the school system which will be trickier. Qualifying medically for services and qualifying in the school system are two separate things. The school system will only provide services that are necessary for El to be successful in a school setting. For example: Unless the high tone on his left side affects his ability to hold a pencil, and participate in the classroom, he won't receive services.

Another tricky thing: I tend to "low ball" El's abilities with the evaluators and doctors. I want to hear what the bad news might be, and I always want to get as many services as possible. This doesn't mix well with Proud Papa, who's so proud and inspired by our guy that he has a hard time not painting his abilities in rose. In any case, the evaluator comes often enough to make her own observations.

More news next week about these other visits.

Elliot's Eyes

Elliot's opthamologist really frustrates me. After the last appointment, and hearing "this is bad" two times too many, we're back where we started with the "wait and see."

Last visit, the nurse dilated his eyes, the doctor checked El out, then requested further dilation. The second examination is when the doctor shared with me that because El's eyes turn in, it's likely one or both will deteriorate (blindness is associated with CMV. Yes, this is the next place my mind goes when I hear this). Then the "this is bad, this is bad." Then me saying, "could you be less cryptic? WHat do you mean BAD? Can we do something about it?" Then he, "Oh yes, glasses, or surgery." Then me, "That's not bad. If there's something we can do, that's not bad." He "Right. Come back in 3 weeks. We'll do all this without dilation."

GROAN. Because he couldn't have popped in before this circus to check him out pre-dilation. Because he admits that this dilation sometimes exacerbates the eyes' tendency to wander.

And so, Friday was three weeks later. No dilation. He, Hmmm. Not as bad as I thought. We can just watch her and see. Me, He. His name is Elliot, you F***. Last visit you said things were bad. I was worried. I don't understand. He, well I was worried. We'll just wait and see. Me, that's what you told us last year. That's where we were before our last visit. He, If this deteriorates, then we may have to do something, but I think we're OK for now.

@#$&*()@#*!!!!!

My friend Holly is always looking for good doctors, and it's not until she asks her questions, that I begin to question our choices. Is it too much to ask that the dolt remember my child's gender, for christsakes? I know Elliot is quite the doll, but shit. And of course, all the confused and contradictory determinations do nothing but strip away at my confidence in anything he says.

So we're looking for another pediatric opthamologist. Not that I won't keep my appt. with this guy in two months. We all deserve better. And because we have these kinds of relationships, with Elliot's pediatrician, with my allergist, with Kevin's GP, with El's therapy team, we know how this should work. And this is not it.

CMV

What's that CMV stand for anyway?

Charming Model Valentine?

Campy Manchurian Ventriloquist?

No, it's CytoMegaloVirus, and you can learn all about it by clicking on the link.

I'm in the process of editing all my posts entitled "Elliot's Health" to include CMV. If you've found this blog by googling CMV, please visit the archived posts to learn about our story.

His is one of the faces of this condition or disease or impairment or whatever it's supposed to be called. Elliot is amazing, inspiring, and besides all that...he's the best of all: He's just a regular, beautiful kid.

Just Typical

Kevin and I find it quite funny that Elliot's latest includes telling us NO for random requests:

• Gimme a high five: NO
• Besito? NO
• Get down. NO
• Stop please. NO

Sometimes, he says NO, then does whatever it is a few minutes later. On his own terms.

That's Elliot. A typical two year old. What a blessing.

Elliot's Hearing Test

Yay! El's left ear is retaining his hearing (unchanged since birth) and he passed the test today with FLYING COLORS!

Those tubes are working, and he's hearing great!

Yay, El!