Thank you all so much for the feedback, the links, and most of all, the help in finding Mira a new toy. We were able to track one down through a link some friends posted on Facebook. A seller had one up on Ebay awhile back that didn't sell. I emailed them, they put the listing back up and we were able to get it! At least now we know we have one on back up - it's on the way.
In addition, a friend offered to look at the old toys to see if any of them could be repaired. Her husband dabbles in electronics and he said he could take a look at them. Even if one of them can be salvaged, it would be awesome!
Again, thank you all so very much for all of your support and keep a lookout for other ones - have a great new year!!!
Wednesday, December 31, 2014
Tuesday, December 30, 2014
The Toy
If you have been following Mira's blog for any length of time, you should know by now that she has a favorite toy and it is about as obscure as it gets. It's made by Tomy and it's called a 'Play by Light' toy. Sometimes it's called a globe toy or piano toy, but I can assure you, it is increasingly difficult to find by any name. Tomy released this piano toy for only one year, back in 1999. A few years back I contacted the company to see if they had any on reserve or sitting in storage, but they did not. Whatever sold originally is what there is available.
Unfortunately, we are on our last one, which is also on the brink of calling it quits. As you can see, Mira has gone through a few of these over the past 9+ years and we have Frankensteined them as much as I can. We end up taking parts and pieces from the broken ones and piecing one together that will work. The problem is, Mira is pretty rough on them. When she is done playing with it, she will grab it and try to fling it off of her tray and onto the floor - the hardwood floor. We learned years ago, to strap it to the tray with a Theraband (resistance band) but she still manages every so often to get it off the tray. She has not only mastered the floor crashing technique, but also smacks the living daylights out of the toy sometimes that I swear it will shatter beneath her palms.
What fails on the toy is one of two things - the circuit board or the speaker. We have three toys where the board doesn't work at all - no sound, no lights, nothing. We have two more that the speaker has failed - you can get sound, but just barely. But if Mira can't hear it loudly, she won't play with it, so it is essentially worthless. It's not the speaker itself that is damaged, as I have replaced it on both of the damaged ones, but rather something in the circuit board perhaps that is routed to the speaker. I know absolutely nothing about small electronics, so fixing the board is beyond my expertise. Mira has broken off the occasional globe face on some of the toys and those are easy to replace. The board is not.
So this is a call for help! If you have a spare one of these toys at home that you are willing to part with, we would love to buy it off you. If you happen to spot one of these in a thrift store, grab it and we will buy it from you. We have been lucky over the years with snagging these off of Ebay, but they are increasingly difficult to find, Please email me at marcus1988001@yahoo.com if you can help!
Unfortunately, we are on our last one, which is also on the brink of calling it quits. As you can see, Mira has gone through a few of these over the past 9+ years and we have Frankensteined them as much as I can. We end up taking parts and pieces from the broken ones and piecing one together that will work. The problem is, Mira is pretty rough on them. When she is done playing with it, she will grab it and try to fling it off of her tray and onto the floor - the hardwood floor. We learned years ago, to strap it to the tray with a Theraband (resistance band) but she still manages every so often to get it off the tray. She has not only mastered the floor crashing technique, but also smacks the living daylights out of the toy sometimes that I swear it will shatter beneath her palms.
What fails on the toy is one of two things - the circuit board or the speaker. We have three toys where the board doesn't work at all - no sound, no lights, nothing. We have two more that the speaker has failed - you can get sound, but just barely. But if Mira can't hear it loudly, she won't play with it, so it is essentially worthless. It's not the speaker itself that is damaged, as I have replaced it on both of the damaged ones, but rather something in the circuit board perhaps that is routed to the speaker. I know absolutely nothing about small electronics, so fixing the board is beyond my expertise. Mira has broken off the occasional globe face on some of the toys and those are easy to replace. The board is not.
So this is a call for help! If you have a spare one of these toys at home that you are willing to part with, we would love to buy it off you. If you happen to spot one of these in a thrift store, grab it and we will buy it from you. We have been lucky over the years with snagging these off of Ebay, but they are increasingly difficult to find, Please email me at marcus1988001@yahoo.com if you can help!
Monday, December 29, 2014
Jekyll and Hyde
Mira had Jekyll and Hyde day yesterday. She started the day being very irritable, which put us in the mindset that it was going to be another long day for her and everyone else in the house. We managed to head out around lunch to visit some friends, which Mira really enjoyed - well, the drive she enjoyed. The actual visit, not so much.
She became very irritable once we were inside and nothing seemed to keep her happy for more than a 30 second stretch. She refused to drink, refused her toy, didn't want to sleep and was not happy being in her chair or on a blanket. If I could ever try to explain or summarize Mira's disposition in one sentence, it would be trying to comfort a 75 pound, 3 month old baby. You essentially try all of the things you would with an infant (minus trying to hold and rock her) and when that doesn't work, you are really out of options.
In the absence of trying to hold her in your arms like a baby, you can try to find the quietest place in the house and see if she will take a nap, which proved to be the winner yesterday. She eventually ended up getting some peace in her chair and was in a much better mood afterward. Something seemed to click with her the remainder of the afternoon, because she was very content in her chair, happily playing with her toy for the rest of the time we were visiting.
Her good demeanor continued for the car ride home and when we got her set up with her toy back at the house. She played and ate uninterrupted, for almost 2 solid hours. That was very atypical for her, especially the past month. For her to be in such a great mood for an extended period, without a single seizure, myoclonic, head drop, or any visible seizure activity, is rare. Eventually, I think she just wore herself out playing and decided she was done and she crashed in her bed pretty quickly.
She woke up in a fairly decent mood this morning, but now is back on the fussy train. Keep your fingers crossed for another better afternoon,
She became very irritable once we were inside and nothing seemed to keep her happy for more than a 30 second stretch. She refused to drink, refused her toy, didn't want to sleep and was not happy being in her chair or on a blanket. If I could ever try to explain or summarize Mira's disposition in one sentence, it would be trying to comfort a 75 pound, 3 month old baby. You essentially try all of the things you would with an infant (minus trying to hold and rock her) and when that doesn't work, you are really out of options.
In the absence of trying to hold her in your arms like a baby, you can try to find the quietest place in the house and see if she will take a nap, which proved to be the winner yesterday. She eventually ended up getting some peace in her chair and was in a much better mood afterward. Something seemed to click with her the remainder of the afternoon, because she was very content in her chair, happily playing with her toy for the rest of the time we were visiting.
Her good demeanor continued for the car ride home and when we got her set up with her toy back at the house. She played and ate uninterrupted, for almost 2 solid hours. That was very atypical for her, especially the past month. For her to be in such a great mood for an extended period, without a single seizure, myoclonic, head drop, or any visible seizure activity, is rare. Eventually, I think she just wore herself out playing and decided she was done and she crashed in her bed pretty quickly.
She woke up in a fairly decent mood this morning, but now is back on the fussy train. Keep your fingers crossed for another better afternoon,
Saturday, December 27, 2014
Withdrawal is Ugly
Yesterday was Mira's last day on Lyrica. We have been on a roller coaster with this medication for a little over 7 years. It's hard to believe it has been that long and Lyrica has been her longest running medication she has been on by far. She first started it in October of 2007 and when she did, we thought it was our miracle medication. While she was completely seizure free for nearly 6 months, her EEG remained unchanged. Her development didn't move forward like we anticipated either. Lyrica seemed to just visibly mask her seizure activity on the surface. Nonetheless, it seemed to help some with her irritability and at the time, we thought it was stopping her seizures.
Soon after it lost its apparent efficacy, we have tried increases (as well as decreases) with Lyrica, with negative results in either direction, so we have always been afraid of getting rid of it completely, continually repeating the mantra 'it is doing something'. Perhaps it is doing something, but what it is doing is merely masking symptoms, not treating them. Her myoclonic seizures have been steadily increasing over the past year, despite increases with Lyrica. After our last neurology visit, we collectively agreed with our neurologist that Mira needed to be taken off of it completely.
Mira has been tapering off it for 4 weeks now, with yesterday being a small 50mg dosage. Early last week, when we dropped from 100mg to 50mg, she had a miserable few days and then seemed to gradually improve by the end of the week. This past week was pretty much a repeat of the week before, so it makes sense that she would be feeling miserable with each decrease. Hopefully, it is all over soon for good.
That brings us to the withdrawal. I have come to the conclusion that almost all of these AEDs are horrible to come off of in some capacity and Lyrica is no exception. There is a host of potential withdrawal symptoms here. After reading through various message boards from people who can articulate the symptoms they experienced during their withdrawal period, I can sympathize with the pain and understand a little what Mira is potentially feeling.
She has been inconsolable today and cries constantly. Nothing keeps her happy for more than 2-3 minutes. She gets frustrated with her toy, then cries and wails until she is exhausted. She was able to take an hour nap this afternoon, but then proceeded to cry for the next 2 hours. Her appetite is still intact, so there isn't a concern that she is too distraught to eat. We have been giving her Advil periodically, which seems to help some, but there is not much else to do for her but wait it out.
Withdrawal sucks.
Soon after it lost its apparent efficacy, we have tried increases (as well as decreases) with Lyrica, with negative results in either direction, so we have always been afraid of getting rid of it completely, continually repeating the mantra 'it is doing something'. Perhaps it is doing something, but what it is doing is merely masking symptoms, not treating them. Her myoclonic seizures have been steadily increasing over the past year, despite increases with Lyrica. After our last neurology visit, we collectively agreed with our neurologist that Mira needed to be taken off of it completely.
Mira has been tapering off it for 4 weeks now, with yesterday being a small 50mg dosage. Early last week, when we dropped from 100mg to 50mg, she had a miserable few days and then seemed to gradually improve by the end of the week. This past week was pretty much a repeat of the week before, so it makes sense that she would be feeling miserable with each decrease. Hopefully, it is all over soon for good.
She has been inconsolable today and cries constantly. Nothing keeps her happy for more than 2-3 minutes. She gets frustrated with her toy, then cries and wails until she is exhausted. She was able to take an hour nap this afternoon, but then proceeded to cry for the next 2 hours. Her appetite is still intact, so there isn't a concern that she is too distraught to eat. We have been giving her Advil periodically, which seems to help some, but there is not much else to do for her but wait it out.
Withdrawal sucks.
Thursday, December 25, 2014
A Better Christmas
Mira had a much better day than the last two. She was incredibly irritable earlier this week, but had a fairly positive day today. She took a host of cat naps throughout the day and an extended nap right after lunch. She had a low grade fever earlier this week (most likely a contributor to her cranky disposition) but that has also gone down today.
Since the weather was cooperative today, almost reaching 50 degrees with some strong winds, we were able to get outside. Something tells me that we are going to be taking full advantage of the new swing at the park next door, any time is gets over 40 degrees outside. Mira loves that swing. The first couple of minutes are the best, when she is giggling so much that she almost gets the hiccups.
Tuesday, December 23, 2014
Irritable Mira
We are in the last week of the Lyrica wean and Mira was doing great, up until yesterday. She has been very, very irritable and nothing is keeping her happy for more than 5 minutes at a time. We haven't seen an increase in seizures, just a huge spike in her demeanor. She is just unhappy and crying all the time. When she isn't crying, she is sleeping.
We have been on this medication roller coaster so many times and for so long, that we are just chalking this up as part of the ride. It's one of the big reservations we have always had about changing her medications. Everyone has to roll with it and the hope is that things will get better for her.
Right now, Mira is on a small dosage of Vimpat (lacosamide), which she started a few weeks ago, soon after we started weaning the Lyrica. Vimpat is one of the few medications she hasn't tried. The likelihood that it will help is minimal, but it's worth a shot. Her myoclonic and tonic-clonic seizures had been steadily increasing over the past 18 months, eluding to the loss of efficacy of the medication she has been on for so long. We tried increasing the Lyrica and the irritability increased too.
Some days (and years), you just can't win. The roller coaster and the year of the seizure continue on..........
We have been on this medication roller coaster so many times and for so long, that we are just chalking this up as part of the ride. It's one of the big reservations we have always had about changing her medications. Everyone has to roll with it and the hope is that things will get better for her.
Right now, Mira is on a small dosage of Vimpat (lacosamide), which she started a few weeks ago, soon after we started weaning the Lyrica. Vimpat is one of the few medications she hasn't tried. The likelihood that it will help is minimal, but it's worth a shot. Her myoclonic and tonic-clonic seizures had been steadily increasing over the past 18 months, eluding to the loss of efficacy of the medication she has been on for so long. We tried increasing the Lyrica and the irritability increased too.
Some days (and years), you just can't win. The roller coaster and the year of the seizure continue on..........
Sunday, December 14, 2014
New Swing
Earlier this year, the city announced they would be giving the park an entire overhaul, which included updated play equipment, a tricycle track, a park shelter, and new swings. I was invited, along with several other adjacent neighbors, to provide input on what we would like to see in the park.
Well, that's an easy question. Mira loves to swing. Having an ADA or an accessible swing would be ideal to have right next door. The only other ADA swing for kids with special needs in the entire area is about 20 miles away, so having one practically in our back yard, would be a dream.
The parks and recreation department was receptive to the idea and incorporated the swing into the plans, along with a host of other comments from neighbors. Construction finally ended late yesterday and the park was opened to the public. Mira was the first one to break in the new swing and she loved it!
I am thankful for living in such a great community, who involves its residents in the decision making process of even the smallest of projects. My deepest thanks to the City of Prairie Village and thanks to Jori Nelson, who helped facilitate the process.
Sunday, December 7, 2014
The Year of the Seizure
It seems like this year will always be remembered as the year of the seizure. While Mira has been battling seizures for the past 9 1/2 years, this year was marked by having them every single day. Her myoclonics seem to have slowly ticked upward throughout the entire year, with no relief in sight.
Let's start with medications. She began the year on Lyrica, which she has been taking for years, while also taking Onfi, which she had been on for about a year. Neither one seem to be doing anything for seizure control. In fact, Onfi caused incredible drowsiness, drooling, and a lot of sedation with her. While she was on Onfi, we struggled with Mira's head control. It seemed to cause a lot of lethargy with her and she was really out of it - struggling just to keep her head up. Ironically, she still was having a ton of myoclonic seizures while on it. After about 18 months of being on Onfi, we decided to wean her off it back in March and April.
We witnessed a consistent flow of myoclonics throughout the entire summer that we just could not control. Mira also continued to average 3-4 involved tonic-clonic seizures a week, sometimes upwards of 6-10 a week. The myoclonics were averaging 100+ a day. Frankly, they are difficult to track, since she has so many. Recently, we tried increasing her Lyrica and it did not go well. Mira had a couple of really positive days with the increase and we were hoping we were headed in the right direction, but she quickly went back to baseline. She started having even more seizures with the increase.
We did have a neurology appointment a few months back and we discussed our options and a plan with her neurologist, in terms of what we can try. Unfortunately, Mira has few options left to try. We first discussed doing a trial of Leucovorin, in the very rare likelihood that Mira might have a CFD (cerebral folate deficiency). A brief trial with folinic acid (a derivative of folic acid) pretty much ruled this out. She is still taking it now, but it is clear that she does not have a CFD or anything related to MTHFR (methylenetetrahydrofolate reductase deficiency) and if she does, it wouldn't be remedied with Leucovorin. We have discussed MTHFR and CFD possibilities with several of her past neurologists, so we figured it was worth a trial.
Our second option was to increase her current Lyrica dosage and unfortunately, we have considered the increase a failure at this point, as it ironically only seemed to cause more seizure activity. After a few more discussions with her neurologist over the past week, we have decided to abandon Lyrica all together, We feel collectively, that it lost its efficacy long ago and the fewer ineffective medications in her system, the better, She is in the process of weaning right now, which makes us nervous since she has been on it for so long.
While she is weaning the Lyrica, we are trying Vimpat (lacosamide) to help control her seizures. Lacosamide is a sodium-channel inhibitor, which she has tried before, so we are not very optimistic. It is one of the few medications she hasn't tried though. If it proves to be ineffective or worsens her seizures, we aren't sure what to consider. One step at a time.
One of the big issues this year also has to do with Mira's weight. She had lost a considerable amount over the past 9-10 months, enough to drop her from the 90% percentile to the 30% range. While her neurologist wasn't overly concerned, he did recommend a consult with a dietitian. We met with someone in clinic to get Mira on a decent calorie intake and she has already gained back a few pounds over the past month.
Mira has had some positive days, as shown in the video below, but they are few and far between. Most days, she is having so many drop seizures and myoclonics, that it is difficult for her to focus on anything. It's heartbreaking to watch her suffer and there is little left to try and seizures have just taken over her routine as of late.
Mira has always battled irritability. It's a vicious cycle of seizures, irritability, and sedation. She gets irritable from the constant neurological static, then has a big seizure, and is knocked out for hours afterwards. She tries to play with her toy, has countless myoclonics while she is trying to play, then becomes irritable and frustrated because it is nearly impossible for her to focus or enjoy it with all of the interference.
So where are we now? Besides trying to advocate for legalization of medicinal cannabis in the State of Kansas, we are researching anything and everything to try and help Mira, as we have been doing for the past 9 1/2 years. Reading and researching countless articles, studies, and trials, while trying to remain hopeful that something will help her. We are open to suggestions and input, so feel free to email me at marcus1988001@yahoo.com.
Let's start with medications. She began the year on Lyrica, which she has been taking for years, while also taking Onfi, which she had been on for about a year. Neither one seem to be doing anything for seizure control. In fact, Onfi caused incredible drowsiness, drooling, and a lot of sedation with her. While she was on Onfi, we struggled with Mira's head control. It seemed to cause a lot of lethargy with her and she was really out of it - struggling just to keep her head up. Ironically, she still was having a ton of myoclonic seizures while on it. After about 18 months of being on Onfi, we decided to wean her off it back in March and April.
We witnessed a consistent flow of myoclonics throughout the entire summer that we just could not control. Mira also continued to average 3-4 involved tonic-clonic seizures a week, sometimes upwards of 6-10 a week. The myoclonics were averaging 100+ a day. Frankly, they are difficult to track, since she has so many. Recently, we tried increasing her Lyrica and it did not go well. Mira had a couple of really positive days with the increase and we were hoping we were headed in the right direction, but she quickly went back to baseline. She started having even more seizures with the increase.
We did have a neurology appointment a few months back and we discussed our options and a plan with her neurologist, in terms of what we can try. Unfortunately, Mira has few options left to try. We first discussed doing a trial of Leucovorin, in the very rare likelihood that Mira might have a CFD (cerebral folate deficiency). A brief trial with folinic acid (a derivative of folic acid) pretty much ruled this out. She is still taking it now, but it is clear that she does not have a CFD or anything related to MTHFR (methylenetetrahydrofolate reductase deficiency) and if she does, it wouldn't be remedied with Leucovorin. We have discussed MTHFR and CFD possibilities with several of her past neurologists, so we figured it was worth a trial.
Our second option was to increase her current Lyrica dosage and unfortunately, we have considered the increase a failure at this point, as it ironically only seemed to cause more seizure activity. After a few more discussions with her neurologist over the past week, we have decided to abandon Lyrica all together, We feel collectively, that it lost its efficacy long ago and the fewer ineffective medications in her system, the better, She is in the process of weaning right now, which makes us nervous since she has been on it for so long.
While she is weaning the Lyrica, we are trying Vimpat (lacosamide) to help control her seizures. Lacosamide is a sodium-channel inhibitor, which she has tried before, so we are not very optimistic. It is one of the few medications she hasn't tried though. If it proves to be ineffective or worsens her seizures, we aren't sure what to consider. One step at a time.
One of the big issues this year also has to do with Mira's weight. She had lost a considerable amount over the past 9-10 months, enough to drop her from the 90% percentile to the 30% range. While her neurologist wasn't overly concerned, he did recommend a consult with a dietitian. We met with someone in clinic to get Mira on a decent calorie intake and she has already gained back a few pounds over the past month.
Mira has had some positive days, as shown in the video below, but they are few and far between. Most days, she is having so many drop seizures and myoclonics, that it is difficult for her to focus on anything. It's heartbreaking to watch her suffer and there is little left to try and seizures have just taken over her routine as of late.
Mira has always battled irritability. It's a vicious cycle of seizures, irritability, and sedation. She gets irritable from the constant neurological static, then has a big seizure, and is knocked out for hours afterwards. She tries to play with her toy, has countless myoclonics while she is trying to play, then becomes irritable and frustrated because it is nearly impossible for her to focus or enjoy it with all of the interference.
So where are we now? Besides trying to advocate for legalization of medicinal cannabis in the State of Kansas, we are researching anything and everything to try and help Mira, as we have been doing for the past 9 1/2 years. Reading and researching countless articles, studies, and trials, while trying to remain hopeful that something will help her. We are open to suggestions and input, so feel free to email me at marcus1988001@yahoo.com.
Sunday, February 2, 2014
Very Brief Update
We just finished weaning Mira off of Onfi, after being on it for 18 months or so - I forget how long its been, but nonetheless, she is done with it. We tried increasing the dosage on several occassions, but it failed to have a positive effect on her seizures. It frankly just increased her drooling and made her more lethargic. Mira continues to take Lyrica, which she has been on for 5+ years. It doesn't completely control her seizures, but it is the best we can hope for, for now.
With all of the buzz (no pun intended) with CBD/THC, we thought it might be worth a shot to try holy basil, which supposedly has some of the same effects/mechanisms as CBD, yet is legal. Mira has been on a low dosage since the end of December, but it has failed to helped. We will give it a little longer until we completely abandon it.
Will update pics soon.
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