News So Far








First, I am posting this from my phone, so I apologize for any weird misspelling.  We’ve been here in Minneapolis since saturday night, but haven’t done much to update with until this morning.

We had a consultation with both Dr. Whitley and Dr. Utz to see how Armand is doing, catch up, and get an idea on how we will proceed.  I also have a small story to share about this consultation when I have better computer access.  However, I will say we are going to again raise the dose of miglustat 2tsp per day starting friday.

Today, Armand is having his lumbar puncture (spinal tap), MRI, some other tests.  Currently, he is out of the spinal tap, all the samples (spinal fluid, blood, urine) have all been sent out, his spinal fluid pressure is normal (GM1 kids are at risk for high cranial pressure), and his opthomologist snuck in and got some photographs and a sonogram of his eyes.  While we don’t have full results, he said that Armand’s eyes look normal.

I have to also add just how awesome my son is with getting checked and prodded and weighed and dealing with nurses and strange people.  They put eye drops in, which gave us some concern as far as his reaction was concerned: we thought he might scream and squirm, and we warned the nurses he wouldn’t like it.  He cried out, but that was about it, through three rounds of drops that the nurses said probably would sting.  The nurses were floored with how brave he was, and then asked to clone him.

That’s all I have right now, will update more as needed.  Thanks for reading.

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2 Responses to News So Far

  1. Great Job being so brave Armond he are defiantly special. Stay strong but it is okay to let loose if you have too. ❤ Thinking about you hope all is still well looking forward to an update.

  2. lol sorry you not he ooops … 🙂

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