Tuesday, November 18, 2008

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.

4 comments:

JSmith5780 said...

Just a thought... Cami's bed is still for sale. She's in TN.
http://camsinfantilespasms.blogspot.com/2008/08/bed-for-sale.html

Last I knew they were asking $3K or best offer.

Karen said...

Just wanted to leave a comment here on one of the meds you mentioned...Neurontin. The Neurologist often use this as well to help some sleep, as in Camerans case. One good thing about her neuro is that he also specializes in Pediatric Neuro Sleep. When she had a sleep study done earlier this year showing she was waking 21-22 times per hour this is what they put her own specifically for that. But it too helps seizures but Cami was already sf she just needed help staying asleep. It worked really well for her they only kept her on it a few months to help her get into a regular sleeping pattern and it really did the trick. One thing you might also mention is about the combo of it and the other sleeping meds she is on, ours recommended not to do that. But I hope you guys can get some relief in that area its a very hard thing to go through specially with the other combo of things going on in the day makes your body just exhausted!

And we do still have Camis bed up for sale we lowered the price to $2500 so we can get rid of it. It is currently being stored upstairs and it is covered up. it came apart very easily. If you are interested feel free to e-mail me.

Best Wishes!

Karen (camsinfantilespasms.blogspot.com)

labonte4 said...

Mark,

I feel for you with the sleep issue. We don't get much sleep with Ava either. The Melatonin always helped her fall asleep...but never stay asleep. From time to time we will give her 2.5mg. of Vallum orally & it will give her 5 solid hours.

Lisa said...

Kali uses Neurontin and it does Ok. She NEVER sleeps well. NEVER. She is a lot like Mira. she has screaming fits all day and all night. We are also using another med called Risperdal (spelling?) It is supposed to help with the screaming.
Mira is beautiful. We are always thinking of her.

hugs.

Lisa & Calvin & Kali