Hi family and friends. We had quite a week last week so I'm giving the girls the night off and writing the blog myself. The week leading up to Nixi and my visit to UC Davis was pretty good. Had some fun park days, both girls had school...a little dicey for Nixi but great for Safi. I think we were all on a edge a bit with the impending trip. So, let's get straight to it and I apologize for any sentence fragments or unclear thoughts. I just want to get this post done and I have no desire to re read it after I'm finished.
Nix and I left after dinner on Thursday evening. Once we got out of Fresno County we hit major weather. Nixi was an absolute trooper, watching a DVD's and just being a wonderful passenger. Despite the weather we made it there in 3 hours. Our hotel was really nice and Nixi enjoyed the massive, comfy bed. She mentioned several times that she missed her daddy and "Faf" and wanted to go home to see her animals but was ok with the fact that we weren't going home. We had a super rainy day in Sacramento, got lost looking for Target, had one massive meltdown, and got in a nap before heading over to the UC Davis Child and Adolescent Psyciatry Department. When we arrived for our appointment Nixi promptly said she wanted to leave, as I had anticipated, so I pulled out a hidden assortment of tiny figures and animals and we were Jake again. Dr. Soulier was wonderful....kind, warm, supportive, and genuine. Nixi was a good girl and played really nicely with all of the clinic's toys, though she wanted to leave. Dr. Soulier has diagnosed Nixi with Psychotic Disorder, Not Otherwise Specified pending further data collection to differentiate between Childhood Onset Schizophrenia(COS) and severe Bipolar I with Psychotic Features. He is leaning more towards COS, but because Nixi is always so moody its hard to tell if her moodiness is a result of coping with her symptoms or if it IS a symptom. So, we will continue to document and have her school do the same. He offered some great insights in to Nixi's memory issues, explaining that the disorganized nature of her thoughts makes it difficult for her to properly store and retrieve information. He also put Autism as a rule out diagnosis because there are a number of her "autistic" qualities that, when looked at in context of the larger picture, may be symptoms of COS and not autism at all. He was extremely informative and empathic. We discussed medications. He said that he felt with absolute certainty that anti psychotics would help with her disorganized thinking, the vague paranoia (but not delusions), and the hallucinations. He also said that she would gain 8 lbs the first week and within a month about 30-40 lb. He reviewed what we know about anti psychotics, particularly in children....they mess with insulin production, fatty acids in the brain, the thyroid, etc. Diabetes, seizures, tardive dyskinesia, etc. are all likely outcomes over time. So, while the medications would work they would also potentially harm her horribly. He said all we had to do was say the word and he would prescribe but Mike and I aren't ready to do that...and he thought that was wise. He's more comfortable medicating at age 5. It comes down to a quality of life issue. At this point her quality of life is fair to good. She hallucinates every day, her general paranoia comes and goes, her disordered thinking is always present. That said, she is still able to attend and enjoy school for the most part, play at the park most times lately with minimal distress, and function as a family member to varying degrees of success. There are days when she is floridly psychotic and on those days Mike and I would medicate her, but at this point those days only last 24-36 hrs or so then back to a moderate grade psychosis where we wouldn't medicate. If the medications weren't so dangerous, we'd medicate her even on her best day because there is no day where she is not psychotic. But that's just not the reality. The meds are extremely toxic. So, Dr. Soulier said that if it gets scary all we have to do is call and he'll call in a prescription to our pharmacy immediately. He said that because he supervises the clinic he only sees a handful of patients one day a week so he will be available to us pretty much at any time. He said that from this point forward Nixi is his patient for the long haul and that he will do whatever he can to help us even if that means traveling to us if Nixi requires hospitalization, etc. He also said that he would help us with those tough decisions. He said that if things gets scary we are to call him and he'll make the decision if she needs to go to the hospital or urgently medicated so we don't have to. As far as sleep meds go, Trazadone will put her to sleep but unfortunately there really aren't any meds that are designed to keep you asleep. So far the melatonin we're giving her in combination with sleeping with the lights on and an adult in the room until she falls asleep and then again when we go to bed is working so we'll stick with that.
We really lucked out finding Dr. Soulier. He offered to call and personally talk to Nixi's pediatrician, school, etc. and he made a point several times during the appointment to make sure we knew we were not alone in this. He shared that he has 3 kids of his own so he was invested in helping us help Nixi. It was a good appointment, if not terribly bittersweet.
After our appointment Nix said she was tired and wanted to go back to the hotel so we decided to stay the extra night. We ordered in room service and watched Strawberry Shortcake movies. Nixi traveled exceptionally well and was beyond excited to talk to her sister on the phone Friday night. Saturday morning we enjoyed our continental breakfast then headed home. Our trip back was long and rough, with lots of rain and strong winds. When we finally rolled up Mike and Safi were sitting in chair on the front lawn waiting for us and it was wonderful. I hugged Safi, who pushed by me and grabbed Nixi giving her a huge hug and a kiss on the eye. It was so nice.
As the girls ate their lunch together Safi said to Nixi, "Nixi, your head's better now? There's no scary things?". Nixi replied, annoyed, "Uh uh." At nap time I had to try to explain to Safi that even though we drove really far and saw the doctor that Nixi's brain is still different, nothing has changed, and that she's too little for medicine right now. It was awful. Awful because its hard to explain to a 5 and a half year old and awful because, regardless of how great Dr. Soulier is and how well the trip went, its true...nothing is different, nothing is better, nothing has changed. So, we move on. Dr. Soulier told me to google medical conditions that result in psychotic symptoms, print them out and take them to the pediatrician and ask him to order any tests possible. He is also reviewing literature and trying to find obscure medical causes because, in his words, "We're already looking at something really rare, like 1 in 6 billion rare so its not crazy to look for the most bizarre possible medical syndrome so we can say we tried everything. That's what I'd do if it were one of my kids." So that's the plan. Now we move forward looking into any non obvious medical cause and trying to find ways to keep Nixi relatively stable until she's old enough to take the risk of medications.
We are overwhelmed, scared, a bit lost and a lot sad. All we have ever wanted was for our children to live happy lives. One wouldn't think that could be such a tall order. We have our work cut out for us.
So that's that. Make sure to check back in next week when the girls return to the blog and the countdown begin to Safi's school Christmas program and the three week winter break.
Sarah
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