The following is very long, I admit. This is a record for me, but also a record for Jules. I imagine that she will one day want to know the details. I think that some of our family and friends may want to know as well.
Jules and I went to OHSU yesterday morning for Jules’ long awaited consultation with a sleep specialist, and the doctor said that he wanted to prescribe Clonazapam to treat restless leg syndrome/insomnia (long story that many of you have heard, so I will leave that out here – I will blog about that in the future), but that he also wanted a sleep study done to rule out additional sleep disorders and just to get more information about how Jules sleeps. He said that if he gave Jules medication prior to the sleep study, it would taint the results, but our appointment for a sleep study was not going to be until the end of April (I booked it beginning of March), thus we were going to have to just live with the status quo for a while. I was so, so touched when the doctor and staff went out of their way to call up an off-duty tech from the sleep lab and asked him to work overtime this week so that we could get Jules into the sleep lab last night. I was ecstatic.
We quickly pulled ourselves together and Jules and I arrived at the sleep lab at 8 pm. The lab is actually in a Marriot Residence Inn in Portland. OHSU must lease out the section of the hotel with the rooms they use. It was a really rough experience. You can imagine how scared a tiny girl would be having electrodes glued to her legs, arms, head and face. She had ten on her head alone. I kept her mostly calm by having her watch a movie on my phone. All of the wires were drawn together at her neck and bound together; they were all connected to a monitor that had to be plugged in by the bed, so we could not move around. A glowing monitor was attached to Jules’ foot and she was so scared of it, I finally pulled it off because she was hysterical about it and I couldn’t get her to calm down in my arms while trying to get her to sleep. Not sure what the tech thought about that move. I may have added $50 to our tab by doing that, as he later attached a new one once she was asleep. Jules finally gave in to sleep at about 10. What a relief that was.
Then the computer attached to all of the wires died. For the next hour, the techs came in and out of the room with flashlights trying to reboot and fix the computer. Thankfully, Jules slept through it all. I was praying that it could be sorted out, because the idea of putting Jules through the process of attaching all of the wires and calming her to sleep all over again on a different night was overwhelming. At around 11 pm, they gave up on her computer and stole one from another room to replace it. They told me they had never had this situation before and were so sorry. The last steps to getting Jules ready were to get an oxygen sensor strapped to her face, which took three different trials at different times, because she actually fought it in her sleep and was going to pull off other wires also. The third time, the tech used a different type of sensor that was a bit smaller and it worked. So at 11:30, everything was finally set. What a night.
Jules usually wakes up sometime after midnight and is up for 2-3 hours because her little body is twitching due to the restless leg syndrome (in her case, restless feet, legs, hands, arms, and neck… sometimes even torso). The tech was worried, because he needed to record 6 hrs of sleep. Our technical difficulties had resulted in us losing over an hour of recording time, and the lab wraps up at 6 am. If Jules woke up and stayed awake as she usually does, we might only get 3-4 hrs of recording. Prayers were answered, because we had no more technical difficulties during the night, and Jules woke up two or three times, but went back to sleep quickly each time with my reassurance. The tech was able to record 7 hrs of sleep.
Jules was forced awake at 6 am; the lights were turned on and the technician began peeling off all of the taped/glued electrodes. It was a hard welcome to the day after a hard night for this little girl. What I didn’t know was that washing (scrubbing… hard) the adhesive off of her scalp and hair was going to be one of the harder aspects of the experience for her. Once the tech left, I gave Jules a bath and used a washcloth and baby shampoo to scrub her head while she cried and cried. It was terrible. But, as it usually the case for tiny people, she rebounded and forgave quickly when the trial was over.
I feel so, so thankful that Jules’ doctor cared enough for her and our family to get us into the sleep lab nearly a month before our schedule appointment. I am so thankful that the technician was able to get the information he needed to pass on to the doctor. I am so thankful that it is over. When Jules and I arrived home, weary and a bit traumatized, I felt very emotional about the fact that there are little kids who have illnesses that require that they have scary and sometimes painful experiences on a daily basis, sometimes for years, sometimes until they die, still a child. This one short and relatively painless experience was just a glimpse into what many families and kids face as their regular life. To eat their meals in hospital cafeterias, to stare at the outside world through windows from hospital halls… no playgrounds, no preschool, no hugs and kisses in their own bedroom with their own toys at night. I hate that this is a reality for some families, for some children. We are so blessed. This sleep disorder is life altering, but it is very minor in reality, when one considers all of the other medical trials that can and do occur for other tiny children. And we are so blessed to live in a time and place in which medical help is so abundant and effective. To think of Jules never being able to have medication, to rarely if ever sleep for several hours in a row at night, for the rest of her life… to think of children with cancer or seizures or any illness suffering daily without help or hope. Terrible.
So now we wait to hear back about the results of the study. The doctor doesn’t expect it to change his plans for treatment, so I assume that Jules will soon start taking Clonazapam, which is a drug used to treat epilepsy, anxiety, sleep disorders, etc. Restless Leg Syndrome is a lifelong condition, so this is just the start of our journey treating this. In addition to the medication, we will continue to give her iron (her ferritin levels are low, which is classic for restless leg) and I am still trying to fully accept that Jules will have to live gluten free the rest of her life (fecal testing found significantly above-normal levels for the markers used to detect celiac disease). While being gluten free has yet to improve her sleep (she has been off gluten for about one month), she is a way, way happier kid off of gluten, she is willing eating more food and a larger variety of foods, and she is putting on weight; I had been concerned for a while about how thin she was and the fact that she was becoming a very picky eater like Grae. A couple of accidental gluten incidents have confirmed that gluten is hurtful to Jules, as she cries and cries and throws tantrums the day after ingesting it. I do have hope that the iron and gluten free may be the ultimate source of recovery from the restless leg syndrome. I plan on asking for a trial without medication 3 or so months after starting medical treatment to see if the dietary and supplement changes are helping in that way.
Thank you everyone for your love and support through all of this :) I hope that we have news of effective medical treatment in the next month or two.