This blog usually contains several sections, the first being something or other that’s been on my mind lately. After that I write a little section on each of my children, commonly documenting something they’ve done or said that’s of note for the day. Over the past two weeks though, the main thing on my mind has been my daughter’s eyes, so her section has ballooned into the focus of my daily posts. I think we can all agree, I hope her eyes will go back to their unremarkable selves soon, but for now, she’s front and center…
The Tiny Girl Audio Update: My daughter has, fairly suddenly, been much more interested in music. She’s always liked songs and singing, but she’s been intent on both hearing and singing songs of late. It is not coincidental in my mind that her recent intense interest in songs has coincided with the decline in her vision.
I’m not saying she’s doing that thing where one sense overcompensates for another, but she has put more thought into hearing things while she’s not able to do much with her vision beyond the range of six inches.
My daughter’s been asking for specific songs and when I play them she’s been intent on singing loudly along. When a song is finished she’ll say things like, “I know that song now,” or “I’m going to tell dad I know another song,” or “I can do that song too.” It’s been as if she wants to collect songs into her repertoire.
She’s been getting better at singing songs but she needs help with the lyrics. I’ve been trying to help her with some of the words, but when I tell her what the lines are, she complains at me because she wants to sing the words (or the sounds) she thinks the singer is singing instead.
The Always Tactful Big Boy Update: My son was talking to Nana at our neighbor’s Labor Day bar-be-cue this afternoon. Nana was going to go back to the house to get another drink but changed her mind when my son told her, “no, Nana, you don’t need another drink because you’re starting to get a little fat."
Monday, September 7, 2015
Sunday, September 6, 2015
The Future of Vision
My daughter’s sudden vision change has been on everyone’s mind of late. We’ve all been trying to understand what happened to cause the change, how to stop whatever it is and how to get her back to being able to see normally again. At this point we don’t have an answer to the “what” part. Not a single theory has been presented that would explain the reason for her sudden and acute loss of vision.
We also don’t have an answer as to how to stop whatever it is that’s causing the problem but the overwhelming suggestion across all the doctors we’ve been working with is to treat with high doses of IV steroids. If the cause is inflammatory-based or is some sort of auto-immune response (although neither are confirmed) then steroids should make a significant difference and will help with a plan moving forward.
The last part is how to get her vision back to what it was. This will be dictated in part by how well the steroids are doing their job. I had hoped the solution was to get the fluid gone from behind her retinas and her vision would show significant improvement quickly, but that may not be the case. We’re not panicking, though. Just like we wouldn’t say, “oh no, she broke her leg, she’ll never be able to walk again!” we’re not thinking, “her retinas are detached, she’ll never have good vision again.” The point here is that healing takes time. And just as with a leg break, there is a chance the leg won’t be like it originally was before the break; with her eyes, it’s a similar situation—we’re not sure what her final visual outcome will be yet.
So, let’s focus on the ocular issues she has right now and look at how healing needs to proceed in order to get her vision back to where it was: Initially, we thought the beginning of the visual symptoms my husband saw (pupils not being round) started everything off. We know a little more now and will know even more after this week’s upcoming re-evaluation of her eyes, but some of the problem has been going on for longer than two weeks.
What the eye doctors saw—we had three specialists look at her eyes on Wednesday—was low blood flow to her eyes. Were her vessels extra small to start? We found out her eyes are slightly smaller than normal, but does that factor in at all? She has vasculitis in the blood vessels feeding into the retina which has caused a thickening of the vessel walls and inflammation. The body’s response to vasculitis is to grow more blood vessels, only the kind of vessels that grow are undesirable. They’re commonly in the wrong place and may even leak. My daughter has some of these extra blood vessels, which means the situation isn’t brand new as it takes time to grow vessels.
So the question is, what is the cause of the lack of blood flow to the eyes? Is it an inflammatory issue? Can it be corrected? The blood flow issue is the one the doctors are looking for a cause and solution for, because without good blood flow to her eyes, her vision won’t improve and may continue to worsen.
The second issue, which is the primary cause of her sudden vision change, is the bilateral retinal detachment. Within a very short time (hours? days?) both retinas detached. This is rare and doesn’t happen without other diseases, conditions or trauma. The type of retinal detachment she has is Exudative Serous Retinal Detachment which means fluid from the eye flows into the space between the retinal layer and the layer beneath it. This is uncommon to happen in adults and almost unheard of in children.
It’s also not “fixable” in the standard way you would fix a torn retina with reattachment surgery. The first thing that needs to be done is for the fluid between the layers to go away. At that time we can look at the process for addressing the detachment. We’re going to see a retina specialist (or possibly two) on Wednesday who will have more information for us. I don’t know what to expect with a child with an uncommon eye condition as far as healing and/or repair goes.
But what about her vision? What can she see? I can tell you this, she is not blind in the extreme sense of the word. She sees things and can discern items quite well at very close range (from two to five inches.) Today while we were at the hospital we played a game with flash cards. She could tell what about two-thirds of the cards were. Of the other third, some of them I’m not sure she would have guessed with her original sight, but some of them she definitely would have know, like the flashlight on the top of the left stack (the ones she said, ‘I don’t know’ to):
The Big Boy Update: Nana brought her cap guns to town. There are no projectiles, just a popping sound as the hammer strikes a chemical dot on a roll of paper. My son *loves* playing with these. My dog and my daughter, on the other hand, don’t like the sound.
The Tiny Girl Chronicles: “Is that the flushing toilet?” My daughter has an IV in her arm that’s been there for several days. She has gotten familiar with some of the medical terminology being used around her. Before they give her any medication or hook up to her IV line they do a “flush” by pushing water through the line first to make sure it’s still working. She asked today if it was the flushing toilet. She doesn’t like the line flushing part and after the flush was done I heard her mumbling under her breath, “bad toilet, bad toilet.”
We also don’t have an answer as to how to stop whatever it is that’s causing the problem but the overwhelming suggestion across all the doctors we’ve been working with is to treat with high doses of IV steroids. If the cause is inflammatory-based or is some sort of auto-immune response (although neither are confirmed) then steroids should make a significant difference and will help with a plan moving forward.
The last part is how to get her vision back to what it was. This will be dictated in part by how well the steroids are doing their job. I had hoped the solution was to get the fluid gone from behind her retinas and her vision would show significant improvement quickly, but that may not be the case. We’re not panicking, though. Just like we wouldn’t say, “oh no, she broke her leg, she’ll never be able to walk again!” we’re not thinking, “her retinas are detached, she’ll never have good vision again.” The point here is that healing takes time. And just as with a leg break, there is a chance the leg won’t be like it originally was before the break; with her eyes, it’s a similar situation—we’re not sure what her final visual outcome will be yet.
So, let’s focus on the ocular issues she has right now and look at how healing needs to proceed in order to get her vision back to where it was: Initially, we thought the beginning of the visual symptoms my husband saw (pupils not being round) started everything off. We know a little more now and will know even more after this week’s upcoming re-evaluation of her eyes, but some of the problem has been going on for longer than two weeks.
What the eye doctors saw—we had three specialists look at her eyes on Wednesday—was low blood flow to her eyes. Were her vessels extra small to start? We found out her eyes are slightly smaller than normal, but does that factor in at all? She has vasculitis in the blood vessels feeding into the retina which has caused a thickening of the vessel walls and inflammation. The body’s response to vasculitis is to grow more blood vessels, only the kind of vessels that grow are undesirable. They’re commonly in the wrong place and may even leak. My daughter has some of these extra blood vessels, which means the situation isn’t brand new as it takes time to grow vessels.
So the question is, what is the cause of the lack of blood flow to the eyes? Is it an inflammatory issue? Can it be corrected? The blood flow issue is the one the doctors are looking for a cause and solution for, because without good blood flow to her eyes, her vision won’t improve and may continue to worsen.
The second issue, which is the primary cause of her sudden vision change, is the bilateral retinal detachment. Within a very short time (hours? days?) both retinas detached. This is rare and doesn’t happen without other diseases, conditions or trauma. The type of retinal detachment she has is Exudative Serous Retinal Detachment which means fluid from the eye flows into the space between the retinal layer and the layer beneath it. This is uncommon to happen in adults and almost unheard of in children.
It’s also not “fixable” in the standard way you would fix a torn retina with reattachment surgery. The first thing that needs to be done is for the fluid between the layers to go away. At that time we can look at the process for addressing the detachment. We’re going to see a retina specialist (or possibly two) on Wednesday who will have more information for us. I don’t know what to expect with a child with an uncommon eye condition as far as healing and/or repair goes.
But what about her vision? What can she see? I can tell you this, she is not blind in the extreme sense of the word. She sees things and can discern items quite well at very close range (from two to five inches.) Today while we were at the hospital we played a game with flash cards. She could tell what about two-thirds of the cards were. Of the other third, some of them I’m not sure she would have guessed with her original sight, but some of them she definitely would have know, like the flashlight on the top of the left stack (the ones she said, ‘I don’t know’ to):
She can navigate around a room or outside with ease. She doesn’t miss stairs and can interact with you easily. But she is not able to see more than big blobs for a lot of her world right now. Those flash cards at five inches she can discern, but at eighteen inches, she’s not sure where the card is. When you put something out for her to take in your palm, she has to hunt to find it. There are about fifteen more things I could write here I’ve observed that have almost made me cry to see happen, but I know her vision situation isn’t permanent in its current state.
So what is the future of her vision? I can’t tell you. We feel very confident that it will be dramatically better than it is today. We’re not completely sure it will be back to one-hundred percent of what it was. There is also a chance for a worse outcome, but there’s no evidence to suggest we need to be considering that as a possibility today, so we’re not, dammit.
The Big Boy Update: Nana brought her cap guns to town. There are no projectiles, just a popping sound as the hammer strikes a chemical dot on a roll of paper. My son *loves* playing with these. My dog and my daughter, on the other hand, don’t like the sound.
The Tiny Girl Chronicles: “Is that the flushing toilet?” My daughter has an IV in her arm that’s been there for several days. She has gotten familiar with some of the medical terminology being used around her. Before they give her any medication or hook up to her IV line they do a “flush” by pushing water through the line first to make sure it’s still working. She asked today if it was the flushing toilet. She doesn’t like the line flushing part and after the flush was done I heard her mumbling under her breath, “bad toilet, bad toilet.”
Saturday, September 5, 2015
Lets Go Ride a Bike
If you couldn’t tell, the title of this post was to be sung to the tune of, “Let’s Go Fly a Kite.” I’ll wait here while you go back to the beginning so you can have appropriate musical accompaniment to this post.
Okay, now that we’re on the same page, let’s talk about where we are with my daughter and her eye condition. She’s home and she’s very happy about that. She and I were alone last night because my husband went back to Pinehurst to continue playing in the member/guest golf tournament with my father-in-law. We’re trying to have our holiday weekend as close to normal as possible and there was really no reason for my husband to sit around with me in a tiny hospital room when he could take my son and our dog with him and they could enjoy being together and doing normal things.
Today, my mother-in-law, son and dog drove here in the morning. My husband and father-in-law came to town after playing golf and we’re all enjoying the end of the day together. This morning, my daughter got up, came to see me and then told me what she wanted for breakfast: Poptarts, which we save for special occasions.
I told her we were out of the strawberry. I asked her if she knew where the chocolate ones were and she said yes and then she left to go get her breakfast. I went into the kitchen a few minutes later to find she had gotten the stool out and gotten the chocolate pop tart pouch (avoiding the other flavor.) She had put the tarts at her seat. When I came in, she was standing on the counter with the cabinet door open, getting the plate to put the Poptarts on.
She ate breakfast and then wanted to play with our neighbors. I texted them while she went outside by herself and colored with chalk for a while. Soon enough, Keira came over and they played for some time while I went to the grocery store to get groceries. (They went to my neighbors house to do an art project and my neighbor was watching her.)
When I got home, my daughter and I went to the hospital for an outpatient IV steroid infusion. This took a long time and she was unhappy, angry and difficult to deal with. She is in pain from the lumbar puncture and when she gets stressed she yells that anything hurts her body. This isn’t because it’s that bad, it’s because the steroids are at such a high dose, they’re putting her on edge, making her a little easier to agitate and making her a far more intense person to be around. We know it’s medicine though and it’s not for long so we’ve been doing the best we can.
When we got home Nana, my son and dog were here. My daughter went out to play with my son and neighbor again and came back in a while later. Then, she told me she wanted to ride her bike. I told her I’d be glad to ride with her. We got her helmet on and then she told me about the seat issue she’d been having with on her balance bike. When I understood the seat was rotating, we got a hex wrench and fixed the problem. Then she and I went out on our bikes and began riding up and down on the road.
But what about her vision, you’re asking me? The thing is we don’t know what it is now, if it’s changing constantly with the fluid build-up behind her retina and how it’s different from what the rest of us see. She doesn’t want to talk about it so we have to infer from things she says and does. For instance, on the way to the hospital today she said, “look mom, there’s a rain cloud up ahead.” She was right, there was. Then, she told me she could see road signs. This was interesting, because road signs are generally not that interesting to a child, but she wanted to tell me she saw them and what colors they were. I got the impression she wasn’t seeing them clearly, but that she knew they were there from how they were differentiated from the surrounding greenery.
At the hospital there were board games. She played Candy Land with her own rules. She couldn’t find the path on the board to move her piece without help. She wanted very badly to move to the special spots like the candy cane or gingerbread space, but she couldn’t find them so she gave up. Later, we did a puzzle together and she had more success, but the patterns were bigger and the lines were bolder.
Tonight, she asked to watch a television show, which she hasn’t been doing much since her vision issues started. We pulled over the tall, bar stool close to the TV above the fireplace and started a show. She asked my husband to move her back a little. We didn’t know if that meant there was a specific focal length she can see more in than others.
While she was biking, my husband came out and was standing in our neighbor’s driveway. My daughter and I were fairly far away at about three houses. I asked her if she saw someone at Bryna’s house ahead. She couldn’t see him. As we got closer she saw someone and thought maybe it was Bryna. When she got right up on my husband at about two feet away, she said, “hey daddy.”
There are lots of other examples I can give, but it’s all confusing with what she can and can’t see. We know the healing process won’t be immediate, but we want to see results now; stat.
The Big Boy Update: My son understands his sister is going to the hospital and it’s with her eyes. He can even talk about it. He doesn’t seem worried about her and is sort of more matter of fact about it. I suppose it’s because he’s a child and doesn’t have the weight of knowledge on his shoulders that we do.
The Tiny Girl Chronicles: My daughter’s vision may be fluctuating (see above for more details) but it’s hard to tell. We played a game today with Disney characters on cards. She could immediately identify the characters she knew. Hopefully her vision at close range will continue to improve.
Okay, now that we’re on the same page, let’s talk about where we are with my daughter and her eye condition. She’s home and she’s very happy about that. She and I were alone last night because my husband went back to Pinehurst to continue playing in the member/guest golf tournament with my father-in-law. We’re trying to have our holiday weekend as close to normal as possible and there was really no reason for my husband to sit around with me in a tiny hospital room when he could take my son and our dog with him and they could enjoy being together and doing normal things.
Today, my mother-in-law, son and dog drove here in the morning. My husband and father-in-law came to town after playing golf and we’re all enjoying the end of the day together. This morning, my daughter got up, came to see me and then told me what she wanted for breakfast: Poptarts, which we save for special occasions.
I told her we were out of the strawberry. I asked her if she knew where the chocolate ones were and she said yes and then she left to go get her breakfast. I went into the kitchen a few minutes later to find she had gotten the stool out and gotten the chocolate pop tart pouch (avoiding the other flavor.) She had put the tarts at her seat. When I came in, she was standing on the counter with the cabinet door open, getting the plate to put the Poptarts on.
She ate breakfast and then wanted to play with our neighbors. I texted them while she went outside by herself and colored with chalk for a while. Soon enough, Keira came over and they played for some time while I went to the grocery store to get groceries. (They went to my neighbors house to do an art project and my neighbor was watching her.)
When I got home, my daughter and I went to the hospital for an outpatient IV steroid infusion. This took a long time and she was unhappy, angry and difficult to deal with. She is in pain from the lumbar puncture and when she gets stressed she yells that anything hurts her body. This isn’t because it’s that bad, it’s because the steroids are at such a high dose, they’re putting her on edge, making her a little easier to agitate and making her a far more intense person to be around. We know it’s medicine though and it’s not for long so we’ve been doing the best we can.
When we got home Nana, my son and dog were here. My daughter went out to play with my son and neighbor again and came back in a while later. Then, she told me she wanted to ride her bike. I told her I’d be glad to ride with her. We got her helmet on and then she told me about the seat issue she’d been having with on her balance bike. When I understood the seat was rotating, we got a hex wrench and fixed the problem. Then she and I went out on our bikes and began riding up and down on the road.
But what about her vision, you’re asking me? The thing is we don’t know what it is now, if it’s changing constantly with the fluid build-up behind her retina and how it’s different from what the rest of us see. She doesn’t want to talk about it so we have to infer from things she says and does. For instance, on the way to the hospital today she said, “look mom, there’s a rain cloud up ahead.” She was right, there was. Then, she told me she could see road signs. This was interesting, because road signs are generally not that interesting to a child, but she wanted to tell me she saw them and what colors they were. I got the impression she wasn’t seeing them clearly, but that she knew they were there from how they were differentiated from the surrounding greenery.
At the hospital there were board games. She played Candy Land with her own rules. She couldn’t find the path on the board to move her piece without help. She wanted very badly to move to the special spots like the candy cane or gingerbread space, but she couldn’t find them so she gave up. Later, we did a puzzle together and she had more success, but the patterns were bigger and the lines were bolder.
Tonight, she asked to watch a television show, which she hasn’t been doing much since her vision issues started. We pulled over the tall, bar stool close to the TV above the fireplace and started a show. She asked my husband to move her back a little. We didn’t know if that meant there was a specific focal length she can see more in than others.
While she was biking, my husband came out and was standing in our neighbor’s driveway. My daughter and I were fairly far away at about three houses. I asked her if she saw someone at Bryna’s house ahead. She couldn’t see him. As we got closer she saw someone and thought maybe it was Bryna. When she got right up on my husband at about two feet away, she said, “hey daddy.”
There are lots of other examples I can give, but it’s all confusing with what she can and can’t see. We know the healing process won’t be immediate, but we want to see results now; stat.
The Big Boy Update: My son understands his sister is going to the hospital and it’s with her eyes. He can even talk about it. He doesn’t seem worried about her and is sort of more matter of fact about it. I suppose it’s because he’s a child and doesn’t have the weight of knowledge on his shoulders that we do.
The Tiny Girl Chronicles: My daughter’s vision may be fluctuating (see above for more details) but it’s hard to tell. We played a game today with Disney characters on cards. She could immediately identify the characters she knew. Hopefully her vision at close range will continue to improve.
Friday, September 4, 2015
Home for the Holidays
My daughter was discharged this evening after an unexpected three days stay in the hospital for her sudden and unexplained vision changes. We were planning on going out of town to spend the Labor Day weekend with my in-laws but now it looks like we’re going to be home for the holidays because my daughter will be returning to the hospital over the remainder of the weekend for an IV steroid infusion each day. My in-laws have decided to come here instead and knowing them, they’ll bring the party with them.
So where are we since yesterday? Today my daughter had a lumbar puncture in which pressure was taken and five vials of spinal fluid were collected for testing. A further seven vials of blood were drawn for other tests. Other than that, we were waiting around for information to arrive and decisions to be made about the course of action to take for my daughter.
We got results back from all the radiology from yesterday. The echocardiogram showed my daughter’s heart completely normal. The angiogram was normal. The brain and neck MRI showed normal with some findings within normal tolerances and variances. She also had a hearing test today which was normal (but we could have told you that without a test.)
Doctors from each discipline (genetics, rheumatology, neurology, ophthalmology, cardiology and possibly other specialties they called in) have been getting together to meet, talk on the phone and exchange ideas and information about our daughter. She has been the hot case, because no one can figure out what has caused her situation. So what is her situation exactly?
First: she has Exudatative Serous Retinal Detachment. This kind of detachment is uncommon in general and super uncommon in children. It’s also not the type of detachment that’s associated with most conditions such as Marfan’s.
Second: She has inflammation in the eye area. This is being treated with IV steroids but the question is why does she have the inflammation? Is the inflammation something systemic that’s only presenting in the eyes at this point? What if it’s an autoimmune issue? We don’t know, but without an identified cause, will it come back and will it cause troubles in other places such as her brain? Bloodworm CRP and ERP show negative on the inflammation area which is good but doesn’t answer why only in the eyes.
Third: Apparently there has been inadequate blood flow to the back of the eye for longer than just this incident, because new vessels have grown in the area of the retina in order to try and accommodate for the low blood flow. Could this vasculitis over time contributed to the detachment?
Fourth: The sudden and dramatic change in both eyes is causing everyone to suspect something that has yet to be identified. Perhaps the vasculitis could have caused the retinas to detach, but the likelyhood of it doing so on both eyes on the same day to such a degree is highly unlikely.
For now the team is going with the leading thought that there is inflammation behind her eye and retina is causing vasculitis which in turn is causing less blood to flow to the retinas. But that’s the leading thought—no one actually knows what she has or what caused it. As the attending physician and lead on her case said today, “no one has what she has.” It’s being treated with IV steroids over a course of five days and steroid topical drops.
The work isn’t over yet though. Tests are still being run. I wanted to get a full list of what was being considered and tested for because many people have asked me “have they though of this?” or “tell them to consider this.” Hopefully this list below will help out, because I don’t know all the team has considered and are testing for. Everyone on the team has said they welcome ideas and so do we; I just don’t know enough to tell you if it’s already been ruled out.
Here are the tests that have been called so far:
- Thyroid: Normal
- ACE: Normal
- CSF basic findings (protein. sugar): Normal
- Lupis panel: Negative
- CRP & ESR: Normal
- CBC: Normal
- ANA (related to Lupis): Negative
- Urinalysis: Normal with a little bacteria
- Liver: Normal
There are a lot of tests still in process. I got a report of them on discharge today and I don’t feel like typing them in, so here’s a picture:
So we’re on hold for now to see how things improve over the next week. We’ve been advised to not expect dramatic improvements in my daughter’s vision because a retinal detachment needs time to heal, not unlike any other area of your body.
The Tiny Girl Chronicles: My daughter was so happy to get home she didn’t even go inside when my husband drove up. She asked if she could go play on the swing set in the back yard before it got dark. My husband said yes and followed her around the house. I quickly called my neighbor and their children came running out the back of their house to play with her until it was time to go in for bath and bed.
The Big Boy Update: Me, “what did my son do today while I was in the hospital?” My husband, “hm…well, he convinced Nana to spoil him because he now has five new toys from the trip to Wal*Mart.”
So where are we since yesterday? Today my daughter had a lumbar puncture in which pressure was taken and five vials of spinal fluid were collected for testing. A further seven vials of blood were drawn for other tests. Other than that, we were waiting around for information to arrive and decisions to be made about the course of action to take for my daughter.
We got results back from all the radiology from yesterday. The echocardiogram showed my daughter’s heart completely normal. The angiogram was normal. The brain and neck MRI showed normal with some findings within normal tolerances and variances. She also had a hearing test today which was normal (but we could have told you that without a test.)
Doctors from each discipline (genetics, rheumatology, neurology, ophthalmology, cardiology and possibly other specialties they called in) have been getting together to meet, talk on the phone and exchange ideas and information about our daughter. She has been the hot case, because no one can figure out what has caused her situation. So what is her situation exactly?
First: she has Exudatative Serous Retinal Detachment. This kind of detachment is uncommon in general and super uncommon in children. It’s also not the type of detachment that’s associated with most conditions such as Marfan’s.
Second: She has inflammation in the eye area. This is being treated with IV steroids but the question is why does she have the inflammation? Is the inflammation something systemic that’s only presenting in the eyes at this point? What if it’s an autoimmune issue? We don’t know, but without an identified cause, will it come back and will it cause troubles in other places such as her brain? Bloodworm CRP and ERP show negative on the inflammation area which is good but doesn’t answer why only in the eyes.
Third: Apparently there has been inadequate blood flow to the back of the eye for longer than just this incident, because new vessels have grown in the area of the retina in order to try and accommodate for the low blood flow. Could this vasculitis over time contributed to the detachment?
Fourth: The sudden and dramatic change in both eyes is causing everyone to suspect something that has yet to be identified. Perhaps the vasculitis could have caused the retinas to detach, but the likelyhood of it doing so on both eyes on the same day to such a degree is highly unlikely.
For now the team is going with the leading thought that there is inflammation behind her eye and retina is causing vasculitis which in turn is causing less blood to flow to the retinas. But that’s the leading thought—no one actually knows what she has or what caused it. As the attending physician and lead on her case said today, “no one has what she has.” It’s being treated with IV steroids over a course of five days and steroid topical drops.
The work isn’t over yet though. Tests are still being run. I wanted to get a full list of what was being considered and tested for because many people have asked me “have they though of this?” or “tell them to consider this.” Hopefully this list below will help out, because I don’t know all the team has considered and are testing for. Everyone on the team has said they welcome ideas and so do we; I just don’t know enough to tell you if it’s already been ruled out.
Here are the tests that have been called so far:
- Thyroid: Normal
- ACE: Normal
- CSF basic findings (protein. sugar): Normal
- Lupis panel: Negative
- CRP & ESR: Normal
- CBC: Normal
- ANA (related to Lupis): Negative
- Urinalysis: Normal with a little bacteria
- Liver: Normal
There are a lot of tests still in process. I got a report of them on discharge today and I don’t feel like typing them in, so here’s a picture:
So we’re on hold for now to see how things improve over the next week. We’ve been advised to not expect dramatic improvements in my daughter’s vision because a retinal detachment needs time to heal, not unlike any other area of your body.
The Tiny Girl Chronicles: My daughter was so happy to get home she didn’t even go inside when my husband drove up. She asked if she could go play on the swing set in the back yard before it got dark. My husband said yes and followed her around the house. I quickly called my neighbor and their children came running out the back of their house to play with her until it was time to go in for bath and bed.
The Big Boy Update: Me, “what did my son do today while I was in the hospital?” My husband, “hm…well, he convinced Nana to spoil him because he now has five new toys from the trip to Wal*Mart.”
More Tests, No Answers
The Tiny Girl Medical Mystery Update: Today is day two at the hospital with my daughter. She was admitted after an evaluation under anesthesia to discover what was happening to cause her vision to suddenly and rapidly deteriorate. At the end of the day, we still don’t have an answer as to the cause.
My daughter has had a head MRI, neck MRI, both with and without contrast and an angiogram added into the mix to look at vasculation. She had an echocardiogram to check the structures of her heart and some chest X-rays to look at some things that wouldn’t be visible on the echocardiogram. Blood was drawn yesterday and some tests were run but today more blood was drawn twice to run more tests.
She has been seen by teams from dermatology, rheumatology and ophthalmology and genetics as well as by a collection of people from the ranks of medical student, resident, fellow, and chief resident.
Things have been ruled our, or marked as “highly unlikely” and new avenues are being considered. Doctors across disciplines have been working together, to try and discover why my daughter’s eyes have two detached retinas and reduced blood flow.
Connections have been considered and looked into, although sometimes those connections are very tangential and weak. Not unlike the same way you would say, “I like Mars Bars; maybe I’m from Mars?” Then, after some cursory investigation, you discover humans have never lived on Mars and decide, “well, it didn’t make sense anyhow.” There have been a lot of those types of ideas floating around.
The number of ideas, conditions, diseases, and defects considered and looked into has been impressive. Everyone has our daughter on their minds and everyone wants to help find an answer so we can begin to treat her appropriately.
At the end of the day today Rheumatology was able to see her. The lead doctor had come by three times and had waited until she returned before going home. We have a plan change as of this evening as a result: intravenous high-dose steroids. This is a preferred course of action but the decision was to hold off for some tests to ensure the results weren’t misleading as a result.
Tomorrow (and what will likely be three more days in the hospital) will see some more tests, although most of the main work has been done. The reason for the extended stay is for the steroids.
As of now, we have some preliminary findings that are good:
- MRI’s are fine (no neck or head issues causing restriction of blood to the eyes, such as a clot)
- Angiogram is fine (would show blood flow issues)
- Echocardiogram is good (would show heart defects)
One other point to bring up that I had clarified to me today is the type of retinal detachment my daughter has. It’s termed “serrous retinal detachment” which means the retinas didn’t tear away from the eye. The serrous fluid builds up between the retinal layer and the layer below. So her retina isn’t torn, which is good. Hopefully it will reconnect when the underlying cause is addressed.
And one other thing: I didn’t know how many readers I had. I think it says I have two subscribers, but it would appear I have more than the three of you out there I imagine when I write these posts. Thanks for the messages and support. We still are steadfast in our belief that this is something that isn’t permanent.
The Big Boy Update: My son missed my daughter. Not only that, he was worried about her. He hugged her and was nice to her and was such a model child when he came to visit her tonight. It made me smile just watching him.
My daughter has had a head MRI, neck MRI, both with and without contrast and an angiogram added into the mix to look at vasculation. She had an echocardiogram to check the structures of her heart and some chest X-rays to look at some things that wouldn’t be visible on the echocardiogram. Blood was drawn yesterday and some tests were run but today more blood was drawn twice to run more tests.
She has been seen by teams from dermatology, rheumatology and ophthalmology and genetics as well as by a collection of people from the ranks of medical student, resident, fellow, and chief resident.
Things have been ruled our, or marked as “highly unlikely” and new avenues are being considered. Doctors across disciplines have been working together, to try and discover why my daughter’s eyes have two detached retinas and reduced blood flow.
Connections have been considered and looked into, although sometimes those connections are very tangential and weak. Not unlike the same way you would say, “I like Mars Bars; maybe I’m from Mars?” Then, after some cursory investigation, you discover humans have never lived on Mars and decide, “well, it didn’t make sense anyhow.” There have been a lot of those types of ideas floating around.
The number of ideas, conditions, diseases, and defects considered and looked into has been impressive. Everyone has our daughter on their minds and everyone wants to help find an answer so we can begin to treat her appropriately.
At the end of the day today Rheumatology was able to see her. The lead doctor had come by three times and had waited until she returned before going home. We have a plan change as of this evening as a result: intravenous high-dose steroids. This is a preferred course of action but the decision was to hold off for some tests to ensure the results weren’t misleading as a result.
Tomorrow (and what will likely be three more days in the hospital) will see some more tests, although most of the main work has been done. The reason for the extended stay is for the steroids.
As of now, we have some preliminary findings that are good:
- MRI’s are fine (no neck or head issues causing restriction of blood to the eyes, such as a clot)
- Angiogram is fine (would show blood flow issues)
- Echocardiogram is good (would show heart defects)
One other point to bring up that I had clarified to me today is the type of retinal detachment my daughter has. It’s termed “serrous retinal detachment” which means the retinas didn’t tear away from the eye. The serrous fluid builds up between the retinal layer and the layer below. So her retina isn’t torn, which is good. Hopefully it will reconnect when the underlying cause is addressed.
And one other thing: I didn’t know how many readers I had. I think it says I have two subscribers, but it would appear I have more than the three of you out there I imagine when I write these posts. Thanks for the messages and support. We still are steadfast in our belief that this is something that isn’t permanent.
The Big Boy Update: My son missed my daughter. Not only that, he was worried about her. He hugged her and was nice to her and was such a model child when he came to visit her tonight. It made me smile just watching him.
Wednesday, September 2, 2015
Bilateral Detatchment
The Tiny Girl Eye Chronicles: It’s late tonight and I don’t think I have the energy to go into the entire story, but I’ll give it a go.
About a week-and-a-half ago my husband thought my daughter’s pupils were no longer round. He wasn’t sure and we didn’t worry about it until the next day when he had me look at it and then I said, “good grief, that’s definitely not round. What do we do?!” I called for an appointment but they didn’t know if they could get us in. I sent a message to our eye specialist via the medical portal and she got back to me saying she could work us in on Friday.
By Friday her eyes and her vision had changed significantly. Her pupils were constantly dilated, her blue eyes were no longer blue but a strange dirt dark grey color and her vision was very, very bad. She couldn’t see the television any more and had no idea how many fingers you were holding up from seven feet away. We were scared.
Dr. Grace saw her on Friday and agreed something needed to be done and the first step was to do an evaluation under anesthesia so they could get a better look. Her inter-ocular pressure was low so it wasn’t glaucoma. She saw no inflammation or signs of an infection. She wasn’t displaying signs of a concussion from a fall and excluded other things based on her experience.
We didn’t have an answer or a course of action and it was frustrating, but we waited. More emails were exchanged online as her situation worsened visually. Dr. Grace coordinated an OR with two other specialists for this morning. We were very grateful and hoped for some answers today.
The procedure was going to be about a half-hour, she said, but at over an hour in and we guessed the answer wasn’t likely to be simple. When Dr. Grace did come out she told us they had done some extra tests, and thankfully they had the retina specialist available because he had helped in determining some of what was going on.
My daughter has bilateral retinal detachment. There is also low blood flow to both her eyes. That explains some of what’s happening, but it doesn’t give any indication as to why it’s happening. Or, how to stop and fix the situation.
Okay, this is not good, I know you’re thinking the same thing I was thinking when I heard the news. But it doesn’t mean it’s permanent, especially if we get the situation addressed quickly. Dr. Grace said she wanted to admit my daughter to the hospital instead of sending her home because there were other tests and consults she wanted to have done and the best and quickest way to get them done was to have my daughter admitted.
As I write this I’m tired, but I’m hopeful we’ll know more tomorrow. We’re having a brain and neck MRI, a consultation from rheumatology, dermatology and cardiology. They’re performing an angiogram on her and possibly some other tests I don’t know about or have forgotten.
Here’s the thing, is it connective tissues? Is it auto-immune? Does she have a genetic issue like albinism? Is it Marfan’s? The number of things we’ve considered has been large, and most of them don’t fit at all other than the one thing that was used to consider the condition in the first place.
It is a very exciting and challenging mystery. It’s just not fun to have it happen to your own child.
Tomorrow we’ll hopefully know more. My daughter has been great all day, getting only really angry once, and that was when they brought her the grape popsicle instead of the orange one.
The Big Boy Update: My husband was with my son for most of the day. He had one thing to tell me about him when we talked on the phone after bedtime: “he doesn’t get in trouble as much when he doesn’t have someone else he’s trying to boss around.”
About a week-and-a-half ago my husband thought my daughter’s pupils were no longer round. He wasn’t sure and we didn’t worry about it until the next day when he had me look at it and then I said, “good grief, that’s definitely not round. What do we do?!” I called for an appointment but they didn’t know if they could get us in. I sent a message to our eye specialist via the medical portal and she got back to me saying she could work us in on Friday.
By Friday her eyes and her vision had changed significantly. Her pupils were constantly dilated, her blue eyes were no longer blue but a strange dirt dark grey color and her vision was very, very bad. She couldn’t see the television any more and had no idea how many fingers you were holding up from seven feet away. We were scared.
Dr. Grace saw her on Friday and agreed something needed to be done and the first step was to do an evaluation under anesthesia so they could get a better look. Her inter-ocular pressure was low so it wasn’t glaucoma. She saw no inflammation or signs of an infection. She wasn’t displaying signs of a concussion from a fall and excluded other things based on her experience.
We didn’t have an answer or a course of action and it was frustrating, but we waited. More emails were exchanged online as her situation worsened visually. Dr. Grace coordinated an OR with two other specialists for this morning. We were very grateful and hoped for some answers today.
The procedure was going to be about a half-hour, she said, but at over an hour in and we guessed the answer wasn’t likely to be simple. When Dr. Grace did come out she told us they had done some extra tests, and thankfully they had the retina specialist available because he had helped in determining some of what was going on.
My daughter has bilateral retinal detachment. There is also low blood flow to both her eyes. That explains some of what’s happening, but it doesn’t give any indication as to why it’s happening. Or, how to stop and fix the situation.
Okay, this is not good, I know you’re thinking the same thing I was thinking when I heard the news. But it doesn’t mean it’s permanent, especially if we get the situation addressed quickly. Dr. Grace said she wanted to admit my daughter to the hospital instead of sending her home because there were other tests and consults she wanted to have done and the best and quickest way to get them done was to have my daughter admitted.
As I write this I’m tired, but I’m hopeful we’ll know more tomorrow. We’re having a brain and neck MRI, a consultation from rheumatology, dermatology and cardiology. They’re performing an angiogram on her and possibly some other tests I don’t know about or have forgotten.
Here’s the thing, is it connective tissues? Is it auto-immune? Does she have a genetic issue like albinism? Is it Marfan’s? The number of things we’ve considered has been large, and most of them don’t fit at all other than the one thing that was used to consider the condition in the first place.
It is a very exciting and challenging mystery. It’s just not fun to have it happen to your own child.
Tomorrow we’ll hopefully know more. My daughter has been great all day, getting only really angry once, and that was when they brought her the grape popsicle instead of the orange one.
The Big Boy Update: My husband was with my son for most of the day. He had one thing to tell me about him when we talked on the phone after bedtime: “he doesn’t get in trouble as much when he doesn’t have someone else he’s trying to boss around.”
Tuesday, September 1, 2015
I Don’t Like Tomorrow and the Butterfly Massacre
The Big Boy Update: Some days my son has these moments. Today he had several of those moments strung together and then piled on top of each other and lost it at him.
My children had come home from school in happy moods. I gave them bananas to eat in the back of the car and when we got moving, I asked my daughter what was on her finger. She had something that was obviously (to an adult) a pipe cleaner and tissue paper butterfly, but it’s always nice to let the child tell you what they’ve created, so I let her tell me about it.
Her brother didn’t apparently make one or didn’t want to bring what he made home or forgot his or who knows what else, but he didn’t have one. He didn’t care though because he just wanted to eat a banana right then.
We got into the house and each did our after school things, cleaning up, going to the potty, not putting your shoes up in the shoe place and being chased down, brought back in the house and stood over until the shoes were placed in the shoe bin, singing the Old MacDonald’s song with strange farm “items” instead of animals and (if you’re mom) trying to clean up while all this is happening.
There were preludes and signs I should have seen to my son doing something I shall call, “scream-worthy,” but I didn’t see them. There were things happening in my mind that likely caused me to be more on edge and more easily pushed into the top-of-the-lungs screaming, but I didn’t notice that either. Then, it happened.
My son was getting ready to go to dinner, putting his shoes on and he picked up the butterfly his sister made. He told me, “I don’t like butterflies.” I told him that was okay, he didn’t have to make one. He said, “I didn’t make one.” Now I don’t know if he wanted to and didn’t get a chance or was busy and missed the time they were being made or really didn’t want to make one, but the next thing I hear, my daughter is crying miserably. She comes to me with a wad of tissue paper that was her butterfly. My son had crushed it, smashed it, ruined it. So I lost it.
I screamed at him telling him it wasn’t okay. I got the catalog of Halloween things he was holding and tore it in half, saying he it was ruined and saying, “but she can make another one” did not ever mean it was okay to destroy someone else work. I went around the corner and got the sticker page he’d been carefully working on earlier and tore it up in front of his face. I told him to get into the car and that I would not be talking to him during dinner because I didn’t want to spend a meal with someone who would intentionally destroy something someone else had made.
There was a lot of crying and wailing. My son tried everything in the car, including saying, “I don’t like tomorrow!” My husband wouldn’t let him come inside to the restaurant while he was upset, but he eventually calmed down. I gave him cold stares all during dinner and he asked why people kept looking at him, because he knew he’d behaved badly.
He was exhausted mentally from the ordeal and fell asleep on the four minute ride home. We got him up and I told my husband I was going to have a different kind of conversation with him now. I held him and we lay down on the bed together (he was still a little sleepy.) I asked him how he thought his sister felt and did he like how he felt and overall, we just talked about it calmly. He understands what he did, but I’m not sure he wouldn’t do it again if he felt he wanted to. He just has a little bit of something in him that causes things like that to happen.
We’re good friends again, although I will step in again any time I see behavior that needs correcting. Hopefully, it won’t be with screams, but every so often something happens that makes me mad enough to do so. Today, it was the butterfly massacre.
The Tiny Girl Chronicles: My daughter spent some time today with a balloon’s string, tying it onto the knobs on a dresser. She told me it was for Ghadi’s birthday. She further told me Ghadi was Ghi Ghi’s friend. If Ghadi moves in, that’s four imaginary friends we have running around the house here.
Fitness Update: Seven miles running this morning and then my upper body workout (about a half-hour) this afternoon. It’s only one day a week, but those thirty minutes make all the difference in my upper body. Before I did anything, I had runners legs and arms that only knew how to move back and forth in time with my runners legs.
My children had come home from school in happy moods. I gave them bananas to eat in the back of the car and when we got moving, I asked my daughter what was on her finger. She had something that was obviously (to an adult) a pipe cleaner and tissue paper butterfly, but it’s always nice to let the child tell you what they’ve created, so I let her tell me about it.
Her brother didn’t apparently make one or didn’t want to bring what he made home or forgot his or who knows what else, but he didn’t have one. He didn’t care though because he just wanted to eat a banana right then.
We got into the house and each did our after school things, cleaning up, going to the potty, not putting your shoes up in the shoe place and being chased down, brought back in the house and stood over until the shoes were placed in the shoe bin, singing the Old MacDonald’s song with strange farm “items” instead of animals and (if you’re mom) trying to clean up while all this is happening.
There were preludes and signs I should have seen to my son doing something I shall call, “scream-worthy,” but I didn’t see them. There were things happening in my mind that likely caused me to be more on edge and more easily pushed into the top-of-the-lungs screaming, but I didn’t notice that either. Then, it happened.
My son was getting ready to go to dinner, putting his shoes on and he picked up the butterfly his sister made. He told me, “I don’t like butterflies.” I told him that was okay, he didn’t have to make one. He said, “I didn’t make one.” Now I don’t know if he wanted to and didn’t get a chance or was busy and missed the time they were being made or really didn’t want to make one, but the next thing I hear, my daughter is crying miserably. She comes to me with a wad of tissue paper that was her butterfly. My son had crushed it, smashed it, ruined it. So I lost it.
I screamed at him telling him it wasn’t okay. I got the catalog of Halloween things he was holding and tore it in half, saying he it was ruined and saying, “but she can make another one” did not ever mean it was okay to destroy someone else work. I went around the corner and got the sticker page he’d been carefully working on earlier and tore it up in front of his face. I told him to get into the car and that I would not be talking to him during dinner because I didn’t want to spend a meal with someone who would intentionally destroy something someone else had made.
There was a lot of crying and wailing. My son tried everything in the car, including saying, “I don’t like tomorrow!” My husband wouldn’t let him come inside to the restaurant while he was upset, but he eventually calmed down. I gave him cold stares all during dinner and he asked why people kept looking at him, because he knew he’d behaved badly.
He was exhausted mentally from the ordeal and fell asleep on the four minute ride home. We got him up and I told my husband I was going to have a different kind of conversation with him now. I held him and we lay down on the bed together (he was still a little sleepy.) I asked him how he thought his sister felt and did he like how he felt and overall, we just talked about it calmly. He understands what he did, but I’m not sure he wouldn’t do it again if he felt he wanted to. He just has a little bit of something in him that causes things like that to happen.
We’re good friends again, although I will step in again any time I see behavior that needs correcting. Hopefully, it won’t be with screams, but every so often something happens that makes me mad enough to do so. Today, it was the butterfly massacre.
The Tiny Girl Chronicles: My daughter spent some time today with a balloon’s string, tying it onto the knobs on a dresser. She told me it was for Ghadi’s birthday. She further told me Ghadi was Ghi Ghi’s friend. If Ghadi moves in, that’s four imaginary friends we have running around the house here.
Fitness Update: Seven miles running this morning and then my upper body workout (about a half-hour) this afternoon. It’s only one day a week, but those thirty minutes make all the difference in my upper body. Before I did anything, I had runners legs and arms that only knew how to move back and forth in time with my runners legs.
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