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.
Showing posts with label eyes. Show all posts
Showing posts with label eyes. Show all posts
Saturday, May 30, 2009
Tuesday, April 14, 2009
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.
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.
Saturday, April 11, 2009
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
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
Friday, April 10, 2009
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.
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.
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