Preschool Graduation!

Soooo proud of this girl

Another Appointment with the Pediatric Opthalmologist

Two months ago, Ashlyn had an appointment with her pediatric opthalmologist.  For more details read this post.  Her doctor wanted to see her again to monitor her eye crossing and eye dilation.  So, back we went.  

I was figuring it was going to be a pretty uneventful appointment.  

Not so much.  

In less than two months, Ashlyn's eyes have continued to be dilated for the majority of the day and they are crossing more than before.  The doctor asked if Ashlyn was having any seizures, which my reply was, "I don't think so," but of course it got me wondering.  

We are glad that Ashlyn's recent MRI came back good so that is a starting point.  The eye doctor wants us to start patching her eye again for two hours each day.  They also ordered a stronger prescription for her glasses to help her eye crossing.

Ashlyn's doctor does not want to do surgery on her eyes for fear of over-correcting.  The doctor also feels that her eye issues are associated with Chiari (in which, Ashlyn's neurosurgeon feels the issues are not connected).

We are moving half way across the country in a few weeks.  This means changing to all new doctors.  I was hoping that this eye appointment would go well so we could wait a little longer before having to get a check up with a new doctor, but she will need to be seen again in three months.  I'm also nervous because this has been Ashlyn's eye doctor since she was six months old, she knows Ashlyn's history and her medical case.  It's hard knowing that if the doctor was starting to track an issue and now we have to change docs.  Darn.

I know who Ashlyn's new pediatric opthalmologist will be, so hopefully it will be a good fit.

So, overall, it could be worse, but not the news I was hoping for.

Two steps forward, one step back.

Ashlyn's new glasses.

On the way home from the eye doctor.  Wiped out.

MRI

We traveled four hours back to Duke Children's Hospital for Ashlyn's MRI.  She hasn't had an MRI for three years so I was a little nervous how the results would look, but I was hopeful. 

The last time we tried to have a scan at Duke, they sedated her with Precedex but Ashlyn wasn't in a deep enough sleep so they had to give her more.  Giving her more Dex resulted in a increased heart rate and her oxygen dropped and they had to stop the scan.  I relayed these concerns to the nurse and doctor this time around.  

For this MRI, the doctor wanted to try to administer Dex through Ashlyn's nose, which would mean, no pokes. (It was a little like a flu mist).  If Ashlyn woke during the scan, then the doctor would use Ketamine, in the form of a shot in her upper thigh, which Ashlyn did end up needing.

Waiting for the sedation to kick in...

After the hour and a half scan, Ashlyn was VERY sleepy and it took a long time for her to wake up.  She ate a few fishy crackers, with her eyes closed, and we were on our way to talk to her neurosurgeon for the results.

Ashlyn continued to sleep in my arms throughout the appointment with Dr. Fuchs.  But, we received great news!!  Ashlyn's scan looked wonderful.  Her brain is right where it should be and the spinal fluid is flowing great as well.  Awesome!!

Dr. Fuchs recommended that Ashlyn return to see her neurologist regarding her headaches.  At this time, we will hold off on that.  Her headaches aren't horrible and I don't want her on medication unless her headaches get unbearable.  She is getting one or two headaches a week, so if that frequency increases, we will see the neurologist.

So, we were on our way, with great news!  Ashlyn continued to sleep and a few hours later she said her belly hurt and she ended up vomiting because of the sedation.  After that, she felt much better and there were no other side effects.

Ashlyn won't need to see the neurosurgeon for one more year!!

Three Year Post Op Appointment

Hello THREE Year post op appointment!!

We traveled to Duke Children's Hospital to meet with Ashlyn's neurosurgeon, Dr. Fuchs.  Ashlyn did really well for the check up and they did a full neurological exam.

We expressed our concerns of headaches, choking, and eyes being dilated (as well as what Ashlyn's pediatric opthamologist had said).  Dr. Fuchs thought that Ashlyn should get get another MRI with flow study to check things out.

I'm not too worried...yet.  I think the scan will look ok and I will be surprised if anything shows up.  She hasn't had an MRI for three years so it will be nice to see the scan to make sure everything looks the way it should.

We will go back to Duke in May for the MRI and then we will meet with Dr. Fuchs after the scan.

Pediatric Opthamologist

I called Ashlyn's eye doctor with concerns about her eyes crossing more and being dilated 80% of the day.  The doctor wanted to see Ashlyn right away.

Ashlyn's optic nerves look good and there is no fluid around the nerves.  This is good news.

Her doctor wasn't sure if her eyes being dilated was a signal from her brain that pressure is starting to build.  The doctor was glad that we have Ashlyn's three year post op check up at Duke in a few weeks so her surgeon can check things out.

Symptoms??

I've been observing a few Chiari symptoms lately.  I'm not sure if they are symptoms or just side effects of the Chiari.

Ashlyn has been starting to have headaches.  I'm not sure if this is new or she is just able to tell us now that her head hurts.  She says the pain is in the back of her head.  They are random and not related to time of day, being tired, or strenuous activity.  One night she went to bed and said she had a headache and she woke up the next day and told me that she still had a headache.  They aren't "scream her head off, bang her head" kind of pain, but it makes me raise an eyebrow.  I know, headaches happen, but when your child has Chiari, things are different.

Ashlyn has been gagging/choking 1/2x a day on her saliva.  She's choked on raw carrots as well and now she is scared to eat them.

Ashlyn's eyes have been dilated about 80% of the day.  Weird.  Her eyes have also been crossing a little more.  Symptom or side effect, I don't know.

Diagnosis Day Anniversary

THREE Years Ago!!!