Lily’s Third Trip to New York City – November 2013

Lily in NYC 11.2013

We had our second face-to-face appointment for Lily with Dr. Najjar today in NYC. It went very well. I have the highlights in bold (for short attention spans like mine) and details following (for those who would have asked me to clarify.)

Dr. Najjar was thrilled with her progress – both from the reports we had from her teachers of cognitive improvement, and observations about improved eye contact and awareness. To put the changes into perspective, the last time we were here, Lily ignored the doctor and peed on the exam table. This time, she got up and gave him a hug.

He is increasing her primary meds now that we have had a positive response for 90 days. This includes her dosage of Namenda, the med he put her on this summer. He also ordered additional IVIG infusions for “at least six more months,” given the progress we have seen.

He is beginning to take her off of the meds from our previous doctor, which we were really hoping for. She’s currently on six different meds, counting the IV infusions. Dr. Najjar did not want to adjust anything previously, because he did not want anything to adversely impact her system as they were making adjustments. None of the meds she has been on are harmful, but we felt that all of them together could be impacting her negatively. He’s still only taking one off completely right now, and then we’ll check back in a month and a half, but it’s progress.

Dr. Najjar gave us a lesson on balancing addressing symptoms with addressing cause. For example, we inquired about her increasing one medication that assists with her attention span, since the dosage has been the same for two years and she has grown significantly in that period. He declined to address it until January – for the same reasons listed above, and then said something interesting: Dr. Najjar reminded us that, while addressing symptoms is okay (which is what this would do), his priority was to address the cause of those symptoms – the neuro-inflammation of the brain, the resulting over-stimulated neuro-receptors, and the low immunoglobulin.

This is so significant because just about every other doctor Lily has seen has focused on the short-term behaviors (in other words, the symptoms she displays), in part because they didn’t know what to do with the long-term solutions, and in part because that makes everyone’s lives easier. Lily’s aggressive behaviors have at times actually increased this school year, in part because she’s more aware of what’s happening around her and, as he reminded us, because her brain is working overtime because of the brain condition. (That doesn’t give her an excuse to be a brat all the time, but he reminded us to expect her to have more irrational behavior than your average kid because of what is going on.) Why is this important? Because what he’s treating won’t help her behavior. It will help the condition that’s causing the behavior. So if making our lives easier in the short term makes it more difficult for the brain to respond to the long-term cure, we can certainly deal with some aggressive behavior every now and then.

• Along the same lines, he reminded us not to measure improvement from one day to the next, because that would fluctuate. We’re to measure improvement from 90 days ago to now, and 90 days in the future. When we look at it that way, her changes have been remarkable by all accounts.

Dr. Najjar reminded us that this is a “long haul” solution. It may take years for her to be completely over the neurological issues she’s dealing with, but given the improvements we have seen, he has even more confidence we’ll get there.

One other note: Remember the hug Dr. Najjar got when he came into the room? Dr. Najjar hugged her back, and said, “I love you, Lily.” Lana said any doctor who does that immediately becomes her favorite, as if he wasn’t already. But that’s worth something!

The Rush family is thankful tonight for God’s provision, for Lily’s progress, and for praying friends like you.

4 Responses to “Lily’s Third Trip to New York City – November 2013”

  1. Sharon Leavitt November 22, 2013 at 2:26 pm #

    Ryan – Sharon Leavitt here from Tyndale House.
    What a great report. I am so happy for you.
    There’s nothing better than getting good news about our children, is there?

    Praising God with you for your precious Lily.

    Sharon Leavitt

    • ryanrush November 22, 2013 at 10:29 pm #

      Thanks, Sharon! No – there’s not. Have a great Thanksgiving!

  2. Joy Giles November 23, 2013 at 12:56 pm #

    Ryan, my it’s been a long time since you were in my class at LHS. It is so great to hear of your accomplishments throughout the years and the wonderful progress of your daughter. I will continue to have you and your family in my thoughts and prayers. May you have a most blessed Thanksgiving.

  3. Jessica Roberts December 3, 2013 at 8:37 pm #

    Good news! When you think of Lily’s progress in 90 day segments it is tremendously clear. For example, after I show her how to say a sentence like “I like swimming” or “I like River.” or “I want to go to the lake.” or “I like Christmas.” or “finger hurts.” she will repeat the whole sentence independently with intense excitement (sometimes several times and sometimes even the next day). Also, today she climbed down from the playscape, smiled at a classmate and took her hand, and guided her to the slide and slid down with her. I am grateful to God for his provision as well.

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