Friday, May 20, 2011

Doctor Updates

Wednesday was a busy day.  We got a second opinion with an ophthalmologist regarding the surgeries that our regular ophthalmologist was recommending and I'm definitely glad we did.  The short version is that he doesn't believe that we need either of the surgeries that we were told we needed.  The doctor was very nice and said that he thinks our regular doctor is great, but in this situation, he doesn't agree with him.  He doesn't believe that the tear ducts are actually blocked because the eyes aren't watery ALL the time especially when she isn't wearing the glasses that rub her eyelashes.  He pressed on the sack (I am not sure that is the right word, but the area at the inner corner of the eye) and nothing oozed out so he doesn't believe they are blocked.  He says that because children with Down syndrome typically have more narrow passageways (we hear that all the time with her ears) that her eyes have a harder time draining.  They are worse when she has a cold because those passageways become even smaller with the swelling/mucous that happens when she is sick.  He actually would rather not do the surgery because if they didn't do it exactly right it would cause scar tissue which would make it even worse.

As for the strabismus surgery to correct the nystagmus...He didn't think that was necessary either.  He was happy about two things...1) That her vision is good enough for her to notice that it improves when she tilts her head back.  If her vision was poor then she wouldn't notice any difference and so she wouldn't tilt her head back.  2) That it improves when she is looking down since that is where most of our activities require our eyes...walking, reading, drawing, etc.  He said that they try to get peoples eyes to do what she is doing already and it wasn't worth messing with.  When we asked why the tilting back of the head helps calm the nystagmus he didn't know and had often wondered himself.  That was a little strange, but maybe it is just one of those oddities of the human body that we haven't figured out yet.

Our plan is to see our regular ophthalmologist again to review what this second doctor thought and make a decision from there.  To be honest though, I highly doubt we will be doing either surgery.

From that appointment we went upstairs to meet with an OT which is required before doing a swallow study.  We need to have the swallow study repeated since it's been a year since our original one and we are hoping and praying that she has improved and that we don't need to do honey thickness for all liquids.  The OT watches Sweet Pea eat different foods and liquids and evaluates the need for the swallow study as well as what exactly needs to be tested during the study.  After watching Sweet Pea eat baby food puree, a Nutrigrain bar, hard thick stick pretzels, honey thick milk and nectar thick juice she agreed that we should do a repeat swallow study, but that we should include a fatigue study as part of it.  That means that instead of just feeding her a few things with barium added to them as they watch what happens with the fluoroscope they will do that and then turn off the fluoroscope and continue to feed her regular food until she tires and then do some more food with barium and watch to see if anything different happens.  I'm guessing that if they see her aspirating during the first part of the study that they won't bother with the fatigue part, but hopefully there is nothing for them to see!  I'm really hoping, but I am not holding my breath.

While we were with the OT she mentioned that we might want to look into something called VitalStim.  I had heard this word a few times, but knew nothing about it.  Here is what the VitalStim Therapy website says about it:
"The VitalStim® Therapy System involves the administration of small, electrical impulses to the swallowing muscles in the throat through electrodes attached to the skin overlaying the musculature.  The therapist determines which musculature would benefit from this facilitation through a patient evaluation.  Once the electrodes are placed and current intensity has been increased to a satisfactory level, the therapist commences traditional exercise therapy with the patient.  The patient exercises the swallowing muscles for periods of up to one hour while receiving concurrent VitalStim.  The VitalStim® Therapy System when applied in this manner, increases muscle strength, accelerates cortical reorganization, and increases the effectiveness of the exercise therapy."

Our current SLP is VitalStim certified, however not for pediatrics.  The place where we get our PT does have an SLP that is VitalStim certified so I am now in the process of trying to determine if we can see her and how to fit it into our crazy schedule.  From what I'm hearing we would do the therapy for about 6 weeks and then do a swallow study to see if there is any improvement.  Since we don't want to expose Sweet Pea to any more radiation than necessary we would want to do this VitalStim therapy before our next swallow study.  We are currently scheduled for the study on July 11th, but if we have to push it a few weeks to complete this VitalStim therapy then that will be worth it.

Thursday we went to the podiatrist and all was well there.  He was pleased with the improvement in her walking and with her gait.  He says it isn't perfect, but it's getting so much better.  Since the last time we saw him was in January before she was walking...duh!  Oh well...I'm just happy he is happy.

Daddy and I are very happy with all three appointments.  We will keep you posted on the VitalStim subject as we learn more.

And to celebrate the good are some photos of Sweet Pea enjoying a cupcake from over the weekend:


  1. Oh my gosh...she is soo cute, and getting soo big! So happy that your appointments went well for you.

  2. VitalStim...I need more information on this...we are giving Maddie Raglen currently for the contraction of the esophagus and "can" be a risky medication...I am looking forward to hearing how Sweet Pea handles it...second opinions are so many times I get swept up in the first doctor and forget to ask questions and make sure it is the "right" move...sounds like you all had a big few days! so nice it was good news...Smiles

  3. What a beautiful little girl! Keep us posted on the various things! If you ever end up needing the strabismis surgery, that's what Chloe had (she had it for strabismis, not nystagmus) and I'd be happy to talk to you about it. Good luck with everything!