We had a great week.  Nixi is responding really well to the Risperidone with minimal side effects.  She has some stomach upset after she takes it and some constipation but all things considered, we'll take that.  We have noticed that .25mg seems sufficient when we are at home. Its looking like we'll need to increase it to.50mg at the end of the week to carry her through the whole day and all of the outside stimulation that decreases some of the benefits we see when she's in the outside world.  We're good with that.  With increased dosage comes increased risk of side effects.  I'm planning to take it exceptionally slow by cutting a .25mg in half for a week or two then going to the whole .50mg.

Beside unwanted side effects, it seems that with really young children the way to go is slow and low.  If she develops one of the more serious side effects the medication has to be stopped and a new one started.  If we go too fast we may "burn out" the efficacy of the drug too quickly.  See, Risperidone is working for now but it wont always work.  The chances that she'll be able to stay on one drug for 10, 15 yrs is extremely low.  Since children are growing and their brain chemistry and body changing, dosage needs to be fiddled with frequently to continue to achieve the same effect.  These kids end up on the highest approved dose for adults by the time they are tweens...sometimes sooner.  Adolescence hits and there is no where to go so you start adding additional meds.  With all of the increases and med cocktails, side effects...the really scary ones, increases exponentially.  Nixi will likely require to be on medication for the rest of her life.  I say likely because there is the off shot that the medical community will find a more permanent method of stabilizing psychosis...I don't know how, but its certainly possible.  Barring the big medical breakthrough, medication will be with Nix forever.  The last thing we need is to go through all of the available drugs before she hits her 20's or 30's.

So, low and slow we go.  I'll call the psychiatrist for our pre arranged telephone appointment and give him our observations.  Her thoughts are much clearer.  We've been able to hold real conversations with her and play games with her for 20 min or more.  She continues to hallucinate...a "super squirrel" flying outside her car window to get a nut, when asked if she thinks the meds are helping replies "Yeah, but my head keep making a lot of different noises at night and I don't like that.", etc.  She role played with me the following day saying that my head had too many voices talking all at the same time and that she would keep me safe.  She's still quite moody and irritable but she is recovering MUCH quicker from these episodes.  What would usually throw her for an entire morning of tears and screaming is now over within minutes, if not seconds.  Her magical thinking seems untouched by the meds, still believing that her and I are psychically connected and that I can hear her from miles away or that her teachers know when we are in our leaving for school and that they talk about it.  Also, sadly, the delusion that I am not her birth mom is still here.  For a few days there it seemed to be gone but then I overheard her telling Safi that her mom brought her here to our house to live with us forever.

So what is Risperidone supposed to do?  It primarily targets hallucinations, delusions, and disorganized thinking.  We can see from just a week that it has helped tremendously with the disorganized thinking, some with the hallucinations (while still there, it seems easier for her to acknowledge them briefly than move on), but delusions are the hardest symptom to treat in psychosis so I wasn't expecting any miracles.  All in all, we're pretty happy with how its going.  Remember, our goal is for symptoms to be in the background...not totally gone and our daughter a walking a zombie.  Thus far, we're reaching that goal!

Mike, Nixi, and I were playing a game with a balloon.  We were tapping it back and forth to each other.  I was struck mid game by the genuine delight and joy that Nixi was experiencing.  I'm used to the wild, maniacal laughter that sounds so forced and unnatural.  This was different.  I have been able to count on my hands the number of times that I have heard Nixi genuinely full belly laugh...always prompted by her sister's shenanigans.  This night her focus on the balloon was intense, her absolute joy and surprise at its quirky movements and final destinations were absolutely real and lasted a solid 20 minutes.  It was amazing.  Mike and I didn't want to stop playing because we were so mesmerized by this very real child in front of us.  Nixi has always been a caricature, an exaggeration of a child.  This was the real Nixi and it was beautiful...absolutely beautiful.

Safi had a good week, despite missing school on Monday to get over being sick.  Her class had been incubating eggs and 4 hatched.  She got to hold them and I'm positive that she secretly named them all. We had a lot of water fountain park days after school.  On the one day when her bestie Sophia wasn't there and Logan, Zoey, and Josh were home taking care of Big Josh who had pneumonia, a couple of her other friends from school showed up.  They ran, squealing "Safi, Safi!!!" from their car, throwing their arms around her and grabbing her hand to go play in the water.  It was really, really special.  She has friends that like her because she is her, not because anyone has facilitated their friendship or guided their play.  She made friends on her own and that victory belongs solely to her.  Yes, adults may need to translate when issues arise...but when they do, her friends chose to remain her friends because they like her.  Its wonderful.  She's an amazing kid and she absolutely deserves for others to know that even if it may be a struggle sometimes for her to communicate how rad she is.

We are expecting a visit from the tooth fairy tonight.  Safi lost her second tooth and its all very exciting, you know.  Safi, Nix, and had a serious discussion about the tooth fairy tonight before bed.  Safi thinks she either lives near Santa or in outer space.  Nixi thinks she lives in a hole...I think she means in a tree.  We discussed that some fairies are small and some, like in Sophia the First or Cinderella, are big.  The consensus was that she is small, with a high pitched voice, and that she will not take dirty and/or rotten teeth.  We have yet to come to a consensus on how she procures the small gift she leaves behind.  Make or buy?!  We'll have to get back to you on that.

This week is National Children's Mental Health Awareness week, Mother's Day is coming (I hear Nixi wants to give me a rainbow), and the weather will cool down for a few days.  I anticipate a week of up's and down's, tears and laughter, and perhaps a rainbow at the end.  A true roller coaster ride from start to finish with a little bit of magic thrown in for good measure.  Sounds about right.

Sarah

Ahoy, Scooby fans...fun on a windy Sunday....