Update

Mira's sleep over the past few nights hasn't improved much. It took her and hour last night to stop screaming and fall asleep, only to get up for several hours again, from about 3:30am until 5:30am. Part of the problem as of late is that we have a few variables in motion, which included adding Gabapentin, which I will get into later. The other thing is that Mira has been battling constipation for months now and when she has trouble clearing out her system, it only adds to her sleeping problems and irritability. Needless to say, we have been giving her Miralax nearly every day to help with the constipation and it seems that when we miss a day or two, it really throws her whole 'chi' off and we ultimately pay for it days later. Well today was the day for her to clear out her system. This has happened several times over the past month and the result is the same. The only detail that you need to know is that another outfit has been officially ruined.

The trial with Gabapentin has been another medication disaster. I think we are now 0 for 4 with post-Lyrica medication trials. She has been on it for about 10 days now and not only have we seen a marked increase in her irritability (yes this could be attributed to her ongoing constipation, but not for 10 straight days.......) but Sarah and I are seeing a substantial increase in seizures. I swear she was consistently having one every 15 minutes today. Lots of hand wringing on her right hand side and funny movements for a few moments after every seizure too. I thought the premise of the medication was to DECREASE her seizures?! I don't know where we are going to look next, but we have discontinued trying Gabapentin for now. It was a very low dosage and there wasn't anything positive about it.

We did receive a letter back from our insurance last week, giving us written confirmation that they have denied our claim for Mira's bed. The problem is that they denied the claim based on a motorized bed, not the manual one we had requested. I'm not sure what happened during the claim process, but basically they denied the claim based on the wrong type of bed. Now we have to try to get our insurance back on track and make sure they are processing the claim for the right bed this time. More paperwork and phone calls.

After years of fighting to get decent pictures of the kids with our point-and-shoot digital camera, Sarah and I finally invested in a digital SLR. After two days, I love it. No more 5 second delays, takes and retakes, and trying to capture decent shots with the kids! The SLR is so slick and has so many foolproof options that it's hard to take a bad picture with the right lighting. Mira posed like a rockstar this afternoon in her 80's shades for us to test out the new camera.

The Long and Winding Road

Sorry it's been such a long time between posts, but things have been fairly hectic over the past few weeks. Unfortunately, our positive melatonin experience(s) had pretty much subsided after my last post on the 3rd. Mira had a couple of great nights at 1mg, but it soon wore off and she returned to her poor sleeping pattern. She started getting up earlier and earlier, so we increased her dosage to 3mg and it was still only helping her for a few 2-3 hour stretches every night. She continued to scream relentlessly during the night, so we ended up calling neurology for some relief. No one seems to be getting quality sleep these days.

After pleading with neurology for some help, her neurologist recommended trazodone, which is a sedative. It's not uncommon to use for kids with developmental disorders and sleep issues, so we figured it is worth a shot. We started her on a low dosage and have since moved up to 25mg at bedtime. It seems to work for a while, letting her sleep solid usually until midnight or so. She consistently gets up and has a few of her screaming fits throughout the evening, in which we give her melatonin again to help her settle back down. It's a vicious cycle of sleep deprivation and irritability with Mira at night and we are just frankly exhausted from it all. We will be starting her on gabapentin (brand name is called Neurontin) which has a nearly identical mechanism of action as Lyrica, to help combat her seizures. I still believe that the root of all of her sleeping issues are neurological and anything within reason that might help is certainly worth trying.

We have been putting Mira in her stander every day, with her AFOs and she doesn't seem to mind it. She loves to try and throw herself backwards once upright, but eventually settles down and gets used to being in a standing position. It turns out to be a two-person job just to get her in the stander, since she is the queen of wiggling, squirming, and kicking. One has to take extra precaution when she is wearing her AFOs, since they are basically pointed plastic weapons once they are on her feet. They are rough on the chins (mine and Sarah's that is).






We did hear back from our insurance this morning on Mira's bed and our company denied the request. We could appeal, but having heard from other parents requesting similar equipment, it's a long painful battle and unlikely to end positively. Therefore, we are looking at $4850 for the bed. We are planning on calling the manufacturer directly tomorrow to ask them specifics on the bed and see what options are necessary and whether we might be able to reduce the cost some.

A few weekends ago we made the trek to Illinois for a few days at Auntie Aura + Uncle Ware's house. We went to an awesome pirate birthday pool party for Addy and had a wonderful time. Did someone say scurvy dog?!





Despite all of the broken sleep and ongoing trials with Mira, she seems to be taking it all in stride. Some days she does really well in therapy, is happy, and seems to be a chatterbox, vocalizing all day long. The next day, she might be on the opposite end of the spectrum, crying and fussing all day. If there is one thing consistent about Mira is that she is inconsistent - you never know what the day is going to bring. Kudos to my wonderful wife Sarah, who endures the daily nuances and at times, complete chaos in our house (appropriately referred to as 'crazytown' more often than not) day in and day out. You are awesome and I love you.

Melatonin Day 2

A big thank you to all the positive feedback and good vibes I received from everyone regarding melatonin. We gave Mira a 1mg tablet last night and I only heard her once, again at 4am very briefly, and she was laughing! She went back to sleep and I didn't hear her stirring around until 6:15am, which was when Eli came storming up the stairs wanting to tell me all about his nightmare about giraffes. Note to self: no more nature shows before bed. Anyway, I think we will stay at 1mg before bedtime and go up if need be. Right now, melatonin is our friend!

I have been corresponding via email with Mira's neurologist about what we might try next, but I think we are not going down that path for at least a week or so to give Mira a break. Her neuro wants to think for a while on what might make sense at this point to control her seizures.

Let the good nights continue!

Melatonin

After weeks of poor sleep, we gave melatonin a try with Mira. We gave her 0.5mg (very low dosage) before bed last night and she slept from about 7:30pm to 4am, even with daylight savings time! That was probably the best night of sleep she has had in weeks. She did get up crying at 4am, so we gave her another 0.5mg and she slept in another few hours.

We haven't seen any sort of withdrawal symptoms after stopping the ethosuximide, nor have we noticed any spike in seizure activity, which is all very promising so far. Let's hope she can go two nights in a row!

This Past Week

We have had a pretty tumultuous time with Mira and her sleep over the past week. Frankly, things are really bad with her getting up in the middle of the night. She has been consistently getting up and staying up for hours, crying and screaming. Last night was a very bad night for her. She continues to be inconsolable during these episodes too - nothing seems to help. All of the insomnia, screaming, and terrible sleep cycles began when she started on the ethosuximide.

While Sarah and I think we have been seeing slightly less seizures with Mira over the past week, the constant screaming and crying in the middle of the night is more than we can stand. I have said this time and time again - either the medication works or it doesn't and in the case of ethosuximide, it was only partially working and the side effects for Mira were horrendous. We took her off of it today. We gave her a small dosage of melatonin this evening to help her hopefully sleep better.

We are so tired of the medication-go-round over the past few months. It is so exhausting for everyone, especially for Mira. We basically have few options left in terms of medications and are jaded by all of Mira's poor responses to everything we have tried since Lyrica. We will probably push on her neuro to try Gabapentin (which has nearly the exact mechanism of action as Lyrica) if things get worse again, but we are going to give Mira a break for a while. She has to be exhausted.

On a positive note, Halloween turned out to be picture perfect for all of the kids. Great weather and great costumes. Mira was a monkey, Jonah was a banana, and Eli was a Star Wars Jedi. Sarah rigged up Mira's switch on her Kid Cart tray so that when she smacked it, it said 'trick or treat'. Worked like a charm!

This Past Week

We have had a pretty tumultous time with Mira