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

Still Crying

Mira has been fussing in her bed for the last hour off and on. Her crabby episodes at night are becoming very routine, unfortunately. I have no idea what to do for her. Any suggestions would most appreciated!!!

Bad Nights Continue

I don't know whether it's the increase in medications or what, but Mira's nights continue to be pretty rough as of late. Last night she was up for hours and just could not find her happy place to calm down. She just screams and cries. During the day, she tends to have her moments in terms of being fussy, but it's her sleep that is really erratic. She has been taking some power naps throughout the day to make up for it, but I really don't think she is getting enough sleep overall since she is up so much during the evening.

We increased her meds to 3ml twice daily on the ethosuximide last week and I suppose we are seeing less seizures. However, we always seem to trade one symptom for another with many of the medications, whether it be irritability, insomnia, or something worse. I just wish SOMETHING would work positively for her like Lyrica did.

We did manage to find something that Mira enjoys to eat lately (besides her usual daily quota of sweet potatoes) which is pintos and cheese from Taco Bell. Go figure. She gobbles it right up. We figured we could make the equivelant at home with refried beans, cheese and some salsa so we aren't making daily trips to TB and the fact that who knows what is actually in it. I think she tends to get bored with the usual food fare we put in front of her, so perhaps Mira figures ANYTHING is better than sweet potatoes, applesauce, yogurt, or oatmeal.

Better Days, Worse Nights

After being on the ethosuximide for the past 10 days or so, it's really difficult to say if it's helping or hurting. Some days we seem to see a lot less seizures, as in today. I've personally only seen 2 or 3, but I haven't been staring at her all day waiting for something to happen. Other days, it's a wash as to whether she is having less or not. It's just hard to tell. The upside is that Mira is doing better during the day than she was on the Keppra or Depakote, although nights are another story.

Last night she was up for several hours just crying and screaming. There is little we can do to calm her down when she is on a roll - she is just inconsolable. There is always a correlation between her appetite and her poor sleeping. Yesterday, she wouldn't eat a bite at breakfast, lunch or dinner. She finally came around at lunch today and ate a decent meal. Tonight as I am writing, she is still having a tough time winding down and is crying and fussing herself to sleep.

One of things Mira has been enjoying of late is her globe toy. She has had it for ages (she actually has a spare one thanks to her former vision therapist who snagged another one for her on eBay) and has always enjoyed playing with it. Lately, she has been getting extremely intense with it, banging and smacking it so hard I think she is going to pulverize it into a thousand pieces. She will go for 45 minute stretches just beating it into submission until she is exhausted. She then sneaks in a 10 minute catnap in her chair, then lights it up for another half hour. She never gets tired of it.



Mira's orthotics (AFOs) came in last week and she had them fitted and adjusted at Children's Mercy. She will probably wear them for an hour a day, mainly during therapy. They should last a little less than a year.

We are still waiting to hear back on her bed at the moment. I called the beginning of October and they told me it was was going to be another 6-8 weeks before insurance will process it. This doesn't mean they will even approve it. If they deny it, we may have to appeal or go another route. I'm not sure why it takes so long - more insurance red tape I suppose. In the meantime, Mira keeps trying to sit up in her crib, which often results in her banging her head into the rails when she launches forward. She is just getting to big and too mobile for it to make sense for her.



The plan for now is to hold steady on the medication fromt. Mira has some room to go up on the ethosuximide, so we are optimistic at this point that it will help in some capacity. She is currently on about 30mg/kg and can in theory go up to 60mg/kg. We are taking it week by week, as usual.

Ethosuximide

Sarah took the boys to Decatur over the weekend for a visit with Auntie Aura, while Mira and I enjoyed a nice long four day weekend here. As quiet as it was around the house, Mira seemed to be pretty irritable all weekend, so we managed to go on quite a few walks. I got our money's worth out of the double stroller and practically wore the tires flat in the process.

One of the things I did notice being home with Mira all day is just how many seizures she is having. I seriously lost count after 20 or 30. Most of them rarely last more than 5 seconds - where she lunges forward with arms extended for a few seconds, then comes out of it and pretty much goes back to what she was doing. It's the fact that she is having so many of them that is disconcerting.

There definitely seems to be a direct correlation between the seizure activity and her irritability. More seizures - more crying. There were a few moments over the weekend where she was just screaming and kicking like crazy and I could not calm her down, other than get her outside and go for a walk with her - just a change of scenery works wonders as a distraction for her. Her fussiness has continued into this week. The past several nights haven't been all that great too - getting up screaming and crying for 45 minutes to an hour each night.

We did take Mira off of Keppra last week, due to the fact that it wasn't doing anything and seemed to be agitating her. She had a very similar reaction with the Depakote - a poor one. So, we are essentially back in full swing on the medication merry-go-round. I spoke and emailed neurology most of last week, trying to determine what to do next. Mira's neuro agreed to try ethosuximide (brand name Zarontin - there is a generic equivalent which Mira is on) only because it has a very similar mechanism of action as Lyrica. Since Lyrica is basically the ONLY medication that has ever helped, we need to try and find similar medications with similar mechanics, but there just aren't many out there. She has been on the ethosuximide for only two days, so it's too early to tell anything.

Sarah took Eli and Mira to the dentist this morning and both did extremely well. No cavities, no problems, and no screaming!

On the Lighter Side

In the chronic state of worry and anxiety that surrounds Mira every day, it's time for a little comic relief. Eli (as well as Mira) take Coromega every day, which is a fish oil supplement (omega 3 fatty acids - good for the brain), masked with orange flavor and a hint of chocolate. In all honesty, it's the best tasting fish oil you can find and you pay the price for good taste. A month's supply costs upward of $50-60 for the both of them. Sarah and I tried to mask the fact that it's fish oil by calling it 'orange pudding', but nonetheless, Eli hates it. Every morning I get the exact same reaction from him, which is 'blah!'. Enjoy!

'What's the Prommo?!'

When Eli was about 2 years old, he couldn't quite get the word 'problem' out, so when he was frustrated or concerned about something, he posed the question 'what's the problem', which loosely translated into 'what's the prommo?!' It's just stuck with me over the years and I now find myself staring at Mira every day when she is screaming her head off asking 'what IS the prommo?!' It's so difficult to understand what exactly is going on in Mira's world and becomes so frustrating when you feel that there is nothing you can do for her. It's really a helpless feeling as a parent and you can't help but feel like a failure at times. Sarah and I find ourselves every day wondering what she is feeling.......is she tired, is she hungry, is she bored, does her stomach hurt, is it something neurological, is it the medication(s), or all of the above?!

Mira spends some part of her day, every day, being irritable. Some days it's a half hour; other days it's sun up to sun down. Other days, nothing makes or keeps her happy and we feel like we are always two steps behind whatever she wants or needs. Sarah and I call it LGF (Low Grade Fuss) where she will just whine, whimper, or all out cry and there is seemingly nothing we can do about it.

On a good note, my Mom came in from Saint Louis for the weekend and was able to see Mira's gymnastics moves, live in action. Mira's mobility increases a little every week. She is still popping right off of the floor into a sitting position. She will do it over and over until she is exhausted. It's great exercise for her and she seems pretty excited when she is in an upward position. Who knows - maybe she can solidify a spot on the 2016 Olympic squad soon.

All that aside, she seems to be adjusting to the Keppra fine - no increased irritability for the past few days, then again, no decrease in seizure activity. I thought I didn't see anything for the first two days, then yesterday I swore I saw a half dozen before noon. We will just keep watching and waiting.

We did add some vitamins back into her diet, since going back on additional medications. We added B12 and folic acid, added to the B6 and omega 3 she has been taking for some time.