Maddie wears glasses -obviously...people often asked me how we knew she needed them...it was the simplest of things...her pediatrician commented during a routine visit at about 9 months old that she needed to see the ophthalmologist...so off we went...next was finding glasses that fit, stayed on, and were VERY durable; a challenge but we found them...funny they are from Walmart...best glasses so far $50 and full coverage on anything and everything that a kid can do to a pair of glasses...Maddie does not mess with her glasses...she needs them...plain and simple...so about 2 years ago our local ophthalmologist got it wrong...A teacher mentioned that she did not think Maddie can see with her glasses on!
Oh my mommy guilt!!
So I offended the doctor and got a second opinion...yep he was wrong...so we began seeing a regular eye doctor...love him!! He was really good with Maddie! So we did not return to the ophthalmologist...
fast forward to March at our annual visit to the Down syndrome clinic they REALLY stressed that we needed to see the ophthalmologist again and we needed to see the one at Children's hospital...well that means another trip to Denver...so I put it off till the summer and when we had more time...mid June came fast and off we went to see the doctor...I kept thinking I should cancel and that it was a waste of time...I was annoyed that it was another visit...so trying to be positive I began to think of the cute selection of glasses they would have!
During the initial exam Maddie was a ROCKSTAR!! Seriously she is so good at it all; matching the pictures, letting them look in her eyes and so on...then the ophthalmologist began her exam and the dreaded silence took over...I know this silence...the one that comes before a diagnosis, a test, and it always results in -more...extra...
The doctor turns to me and says "has anyone ever told you that Maddie has fuzzy retinas"
huh! What!! Um no! I start to laugh...because this is Maddie! In a nut shell...
we go in for glasses and come out with a MRI...after pictures and ultrasound on her eyes...Maddie has a problem...and we do not know what it is...so 10 days later after insurance gave the ok the MRI confirmed that Maddie has to much pressure in her head and is causing her retinas to be swollen...
hence fuzzy retinas...
This is not optimal to say the least...am I relieved that it is not a tumor?? obviously...
but really can we not just go to the doctor and have a "looks great! We will see you in a year" nope we get the you get to go see the neurologist in a week..because it is "urgent"... WTF...if something can go wrong or different or challenging...it will happen with Maddie!!
this past week Maddie had her Spinal tap or lumbar puncture which ever you want to call it...and it confirmed that Maddie has to much fluid in her brain (pseudotumor cerebri, idiopathic intracranial hypertension) causing pressure on her optic nerve...causing her eye sight to worsen and possibly go lights out all together...they drained the excess fluid and she is now on a pill twice a day that will hopefully keep the fluid down and the pressure off her optic nerve...
to say i am ok with this is a bit of a stretch...while we were waiting to be released by the hospital one of the doctors came in and said that we should be relieved that we are not being seen right away by the neurologist team because it means our child is not as bad as another child...i am gonna be honest with you..i was not relieved...i was not happy...Maddie was not happy...she has been put under anesthesia over 20 times in her short life...she has had as many surgeries and/or procedures done...and this one had to do with her brain...lets face it the only low risk, not a big deal surgery/procedure is done on someone else child...not your own...
the up side of this is that Maddie's sight may improve...so new glasses!! the not so upside is that we have gained two more specialists that include monthly visits to Denver until further notice...Maddie of course is amazing...but her little body needs a break!!
Oh my mommy guilt!!
So I offended the doctor and got a second opinion...yep he was wrong...so we began seeing a regular eye doctor...love him!! He was really good with Maddie! So we did not return to the ophthalmologist...
fast forward to March at our annual visit to the Down syndrome clinic they REALLY stressed that we needed to see the ophthalmologist again and we needed to see the one at Children's hospital...well that means another trip to Denver...so I put it off till the summer and when we had more time...mid June came fast and off we went to see the doctor...I kept thinking I should cancel and that it was a waste of time...I was annoyed that it was another visit...so trying to be positive I began to think of the cute selection of glasses they would have!
During the initial exam Maddie was a ROCKSTAR!! Seriously she is so good at it all; matching the pictures, letting them look in her eyes and so on...then the ophthalmologist began her exam and the dreaded silence took over...I know this silence...the one that comes before a diagnosis, a test, and it always results in -more...extra...
The doctor turns to me and says "has anyone ever told you that Maddie has fuzzy retinas"
huh! What!! Um no! I start to laugh...because this is Maddie! In a nut shell...
we go in for glasses and come out with a MRI...after pictures and ultrasound on her eyes...Maddie has a problem...and we do not know what it is...so 10 days later after insurance gave the ok the MRI confirmed that Maddie has to much pressure in her head and is causing her retinas to be swollen...
hence fuzzy retinas...
This is not optimal to say the least...am I relieved that it is not a tumor?? obviously...
but really can we not just go to the doctor and have a "looks great! We will see you in a year" nope we get the you get to go see the neurologist in a week..because it is "urgent"... WTF...if something can go wrong or different or challenging...it will happen with Maddie!!
this past week Maddie had her Spinal tap or lumbar puncture which ever you want to call it...and it confirmed that Maddie has to much fluid in her brain (pseudotumor cerebri, idiopathic intracranial hypertension) causing pressure on her optic nerve...causing her eye sight to worsen and possibly go lights out all together...they drained the excess fluid and she is now on a pill twice a day that will hopefully keep the fluid down and the pressure off her optic nerve...
to say i am ok with this is a bit of a stretch...while we were waiting to be released by the hospital one of the doctors came in and said that we should be relieved that we are not being seen right away by the neurologist team because it means our child is not as bad as another child...i am gonna be honest with you..i was not relieved...i was not happy...Maddie was not happy...she has been put under anesthesia over 20 times in her short life...she has had as many surgeries and/or procedures done...and this one had to do with her brain...lets face it the only low risk, not a big deal surgery/procedure is done on someone else child...not your own...
the up side of this is that Maddie's sight may improve...so new glasses!! the not so upside is that we have gained two more specialists that include monthly visits to Denver until further notice...Maddie of course is amazing...but her little body needs a break!!
Omg Kim - I totally hear you Madd's deserves a break you'all do ! I have a similar fear of going to the dr with O because it seems we never get a free pass there is always extra - next up for us is a sleep study ...I am bracing myself. It is a blessing of course that you found out about Maddies eye condition but what a shock!!! Of all the things !!! Please hug Maddy from me.
ReplyDeleteThank you for the updates. I love reading other parents' experiences with their children. My daughter is now 7 months old and is scheduled for a catheterisation procedure to close a PDA in ten days time. And all the best as you prepare to meet all the specialists - its for a good cause. Pass my regards to Maddie.
ReplyDeleteYikes! Poor Maddie. Glad some one caught that though. Hope everything continues to get better with her eyes. Can't imagine the stress you were under while that was happening :( Hugs Kim.
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