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.”