Monday, June 25, 2012

Brief Updates...

Life is busy... way too busy... plus, it's that time of the year where we are seeing most of our specialist for follow-ups... so I blogging took a serious backseat.

Let's start with today because it's the most fresh even on my mind... ENT... scratch that, I lied... I need to give you a little back story before I detail today. As you know, we've been working with ST since July 2009 with Brice and August 2010 with Pierce. Recently, ST and I were discussing the possibility of Apraxia and the kids... long story short, she brought over a Childhood Apraxia of Speech checklist and sure enough, it looks like we may be dealing with apraxia. She was able to mark off all but a few items for both Brice and Pierce. So fast forward back to today's ENT appointment...
  • Pierce
    • physical exam - no issues
    • hearing test - ear drums were a little stiff but nothing too serious; OAEs were good; overall, hearing looks good - we follow-up in 6 months for a re-eval to determine if he truly wasn't hearing some low level tones or if it was just because of his age
    • sleep study - will take place sometime in November or December
  • Brice 
    • physical exam - no issues
    • hearing test - no issues and my big boy did the entire hearing test on his own while I was in the other audiology suite with Pierce!
    • hypernasal speech - B is a little over 8 months post-op from his T&A and still hypernasal (speaking through his nose) with his speech... according to Dr. S this occurs about 1 in 5000 T&A kids (go figure, right?). Dr. S has two ideas:
      • 1.) He asked if Brice had eve been worked up with genetics, which he hasn't... his hyspernasality could be due to low muscle tone which could be related to mito disease. He, plus a few of our other doctors think that they both have the same genetic thing going on, but what exactly, is still a little unknown. So off to genetics we go for a big work-up (microarray, amino acids, CBC, CMP, etc = LOTS of blood to be drawn)
      • 2.) We are being referred to a Cranio-Facial surgeon to discuss the hypernasality. It could have been caused by the T&A. Dr. S felt as though he left behind enough adenoid tissue that would have negated this issue, but at this point, nothing is certain. We will be seeing cranio-facial on July 13.
Pierce has his quarterly follow-up with genetics on Thursday, June 28. We will be getting back the results of his mitochondrial DNA bloodwork. I really hope it gives us a bit more insight into his disease... having an unspecified one is so tough because no predictions for the future can be made and there are just so many unknowns.

Both boys saw pulmonology sometime recent, I think?? Pierce's was pretty non-eventful - just come back when lung season kicks off type of deal... Brice, not so much... he starts daily preventive treatment on September 1 using an Alveso inhaler. We were also given an Rx for Xopenex rescue inhaler and Xopenex neb vials. He goes back in September too.

And last, but certainly not least... immunology. We made the switch to SCIG (sub-cutaneous Ig) infusionson May 30! We've completed 4 SCIG infusions since then, with our 5th one taking place this coming Wednesday. So far, they are tolerating the new drug well. We did our first two infusions in the hospital. 

The last two infusions have taken place at home. They are going marginally better than either infusion did in the hospital. It looks like a lot of prep work but it's really not...

Right now, we are doing weekly infusions on Wednesdays. At some point, we will slowly transition the boys over to weekend infusions that way it won't interfere with school during the week.

And for now, that's it because I have about 10 orders to go work on - look for another post on Thursday afternoon :)

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