Thursday, July 31, 2008

Drowsy

Today has been kind of a weird day for Reagan. She slept well last night and woke around 7am having lots of seizures and crying in between them. These are just the worst. It's like they are causing her pain...the doctors swear that's not the case...but I don't know. She did that off and on until around 9:30am when she went down for a nap. A long nap. She woke up about an hour before we had to leave for therapy and she seemed OK...no more crying but she was still having more seizures than usual (although that's a relative term depending on when you ask). At therapy she just seemed drowsy and out of it the whole time. She was very floppy and had a dazed look in her eyes. I'm not sure what was wrong with her...could be that her body is just adjusting to the new increase in vigabatrin...maybe she's getting sick. Who knows? She fell asleep during the last part of her session and was out like a light. Her therapist had arranged for a guy to bring by a seating system for her to try out (not the one we were already looking at but a comparable one of a different brand...the x:panda by snug seat). It looks like it would work well for her, but I'd still like to see a couple more options before deciding on one for sure. We put her in it and she didn't move a muscle...something was definitely up with her, she never sleeps that soundly! I brought her home and she slept another couple hours. When she woke up she had a brief period where she seemed slightly more alert, but tonight she was back to being drowsy again. I hope she's feeling better tomorrow...we've got a busy day planned. Please keep her in your prayers, she needs some relief from these seizures!




This posture is exactly why we need the chair for her. She's either leaning over to the side or leaning back at all times...it makes it very difficult to carry her around all day. (Look at those teeth!)

Wednesday, July 30, 2008

The Big Red Stander

So last night didn't turn out as planned. We did NOT have a good night's sleep...thanks to little Miss Reagan. It's funny because we were just talking to my Dad last night telling him how well Reagan has been sleeping lately and how for the last several weeks she's slept through the night (with the exception of 2 nights). Well make it 3! That's exactly why I hate to talk about anything that is going well...because then we get sideswiped with the bad. She was up last night at 1am and 5-6am crying a lot. And then when she woke for good at 7, she was happy. Who knows with this kiddo. She was happy most of the morning and we made our 45min treck to pick up her stander and she slept the whole way there. She woke up and was super cooperative as we fitted it to her and loaded it into Mike's truck (this is one big, heavy piece of equipment). I fed her a bottle and then we headed home. That's where the cooperation stopped. She was furious and screamed and cried NONSTOP the whole way home. Once home and out of the carseat I thought surely she would stop. Nope. She proceeded to cry nonstop for another 1.5hr until she finally fell asleep. I'm still not sure what her problem was. Could be gastrointestinal or just BRATinal. I think the stander is going to work well for her...it's just not as user friendly as some other models (it's a Superstand by Prime Engineering). It's very fancy and looks like it has all of the support she needs...but what do I know. Her PT is going to make a house call on Friday to come and check it out (which is very nice of her), it's just too heavy to lug to therapy. Mike thinks she looks like Hannibal Lecter in it. I admit, it is a little institutional looking...but if it helps her then who cares.


The top part of it folds down, but it only gets as small as the size of the base...which is still pretty big. It's very heavy and solid, which is a good thing since she's using it for support. I didn't fasten any of the harnesses, but there are quite a few of them and they really hold her in there snugly (and make it very difficult to get her out of it in a timely manner...not a good thing with an easily agitated baby).

Tuesday, July 29, 2008

New stuff

Reagan has had a much improved day today. She has been in a great mood most of the day. I'm hoping this is a sign of good things to come with this new increase in her medication. Reagan had a full day of therapy today. We met with her ECI case worker first thing this morning. Tomorrow she's meeting us at their headquarters and we're going to pick up and get Reagan fitted for the stander they are loaning us. Finally we're getting a piece of equipment she needs! Vision therapy was next and Reagan's vision teacher brought by all kinds of new stuff for us to use to stimulate her vision. She brought a light box, some flashlights with colored discs that can be changed out to project colors on a black background, and another adapter to use with the switch kit she already brought us. We are good to go for vision therapy. And then we followed it all off with physical therapy with her favorite therapist. Reagan was very alert and we used the new SPIO vest I ordered for her last week (I ordered it Friday and they delivered it Monday...very quick!). It's supposed to help her with her trunk control and posture (it looks like a spandex leotard)...it seemed to help. She did get a little aggravated toward the end when we put her AFOs on, but she was exhausted and very much due for a nap. Here's to a good night's sleep tonight.

Monday, July 28, 2008

Cool at last

Today has been an odd day. A Monday, I guess. Reagan went to sleep last night very early around 8pm (she's usually up til 11 or so)...so I knew that didn't bode well for our sleep. Sure enough she wakes up at 2am and she's WIDE awake. And chatting up a storm. She was in a great mood and just so talkative! Mike and I took turns with her on the sofa and she was such a character. Finally around 4:30am I gave up on getting her to fall asleep so I laid her back in her swing and let her talk to herself (which she did) and we went back to bed. She decided to wake up for good around 7am, unfortunately I think she used up all of her happy time during the night because she's been super whiny all day today. She kicked the bad mood into high gear just in time for occupational therapy, so needless to say that session was a bust. In defense of her OT...there was obviously some gastrointestinal involvement because she filled her diaper to the brim just as we were leaving therapy. I spoke to her pediatrician about it today and she thinks maybe we should try giving her more laxative. I've been giving her small amounts of laxative daily just to keep her semi-regular but she wants me to increase it. So we'll see. Maybe that will help? We rushed home from therapy to meet up with the A/C repair man and to our surprise Mike came home early so he could be here to talk to the guy himself (although I don't know how much it helped). He thinks there's definitely a leak (and said the other guy probably didn't add much if any freon)...it's going to cost us $2500 to replace the leaky coils. Great, just great. That's certainly more than I was expecting but what can you do...you have to have A/C! They are supposed to fix it on Wednesday, meanwhile he added enough freon to last until then. So at least we're cool again. We're gradually increasing Reagan's vigabatrin over the next couple days so hopefully we'll see some improvement seizurewise. So far every time we think we're seeing less, she goes and has a bad cluster of them. We're still holding out hope that this medication is going to do the trick for her. Please keep her in your prayers!!

Sunday, July 27, 2008

Hotter

We actually made it through the night rather comfortably but today it seemed even hotter than yesterday. I just hope we're able to get someone out here tomorrow to fix our A/C! Reagan has been a sweetie today. She's gone a couple days without wearing her AFOs...I just don't have the heart to strap her up into those things with it being so hot! She gets sweaty in them even when it's cool inside! I did just get a statement from the insurance for those things...$3100!!! Insane! Yes, they are made especially for her... but give me a break!! Just another example of how ridiculously expensive all of these things are (thankfully our insurance did cover them...at least they are covering something)! It's been another unproductive weekend. It's just too darn hot to do anything! Although that didn't stop Mike from his golf today...he's obsessed! We did go to church this morning (a little late but we made it) and Reagan was a perfect angel.



Saturday, July 26, 2008

HOT

It's so hot here in Houston right now and then the humidity makes it nearly unbearable!! It's so sticky...why do we live here again?!?! And to top it all off our A/C is crashing. We had a scare with it about a week ago but a repair man that was fixing our neighbor's A/C added some freon to it and it seemed like it might make it for a while. Turns out a while is only a week because now we're right back to where we were before. I'm guessing he added just enough to fix it temporarily and has been waiting by the phone for us to call him up for the "big repair". Yuck. These repair men are all out to scam you but what can you do? You have to have A/C!! And Reagan has been such a turkey today. Lots of moaning and whining! Maybe she's miserable too?!?!? My mom is watching her tonight so Mike and I can go do something by ourselves. It will be nice to get away for a little while (to someplace with working A/C anyway). Hopefully she'll behave for Grandma.

**Update- She behaved for Grandma because she slept almost the whole time we were gone. We had dinner nearby and were thinking about seeing a movie (the last movie we saw in a theater was several years ago), but none of the ones we were interested in were starting in the near future so we came home. Thank goodness because Reagan woke up screaming again. Not that we were any better at consoling her than Grandma, but I would have felt guilty knowing that she had to contend with that on her own. She eventually calmed down after an hour or so of hysteria. Poor baby...something is definitely hurting her. I wish she could tell us what it is.

Friday, July 25, 2008

Playdate

Today Reagan had her first ever playdate! I know that may sound strange to some (with her now being 16 months old)...but you see Reagan doesn't play. So a playdate for Reagan has never really made much sense. But today my friend Meghan brought her son Jackson over. We've never met but have been talking on the phone since February when both of our kiddos started taking daily injections of ACTH for their Infantile Spasms. It was great to finally get to meet up after all this time. Jackson is about a month younger than Reagan (and a preemie) although you could never tell by looking at him now. He's quite a big boy! Both were very well behaved and I think a good time was had by all. It was a nice get away from the constant stream of therapies and doctor's appts that we both have to work around on a daily basis. Reagan was very good today...but she did have another one of her gastrointestinal episodes tonight. She woke up from a nap screaming and continued to do so for about an hour and a half. Poor thing. You could just tell she was in pain. I called this week and asked the dietician (for the ketogenic diet) about it and she wasn't sure what it could be. I still think it has to do with the diet/vigabatrin combination. I may end up having to take her in to the pediatrician next week to ask her about it (although I'm not sure how much good that will do). Please keep her in your prayers...


Thursday, July 24, 2008

Same

Last night was much improved...Reagan slept straight through the night again! Thank you Lord! It was great! She woke up in a wonderful mood and was an absolute angel for her PT session this morning. Unfortunately it didn't last long and she became extremely whiny as the day went on. I think she was just plain whiny today...what can you do for that? Against my better judgment, we took her to Bible study tonight and she was actually behaved much better than anticipated. You just never know with her. Seizures are still about the same. She has a lot in the morning when she first wakes up and also after naps. I spoke with her neurologist today...he was just checking in with us before going out of town for 2 weeks. Hopefully we won't have any reason to contact him because our point of contact is my not so favorite nurse! We're just going to follow our plans for increasing the vigabatrin and keep praying for less and less seizures!!

Wednesday, July 23, 2008

Bad night...good day!

Reagan woke up A LOT last night. From about 2am and on she was was waking up at least once an hour. Each time she would fuss and cry...I would give her some juice (or at least try to) and then she'd finally go back sleep. That stopped working around 5am and I had no choice but to pick her up. She fussed and cried for about an hour and I finally laid her back down (awake) at 6:15am. She slept until 8 and then she was up for good. Previously, a night like that would have been no big deal. But I have just gotten SO spoiled lately...with her sleeping through the night each night...it's been HEAVEN. Our first taste of normalcy and it has been so wonderful. Definitely an answer to prayers. Despite the erratic sleep last night, she's been in a great mood today (go figure lack of sleep doesn't bother her). We had our first good OT session in a while, she did get a little fussy but after a quick bottle she was fine and dandy. We're still working on funding options for a chair for her...I spent a lot of time today searching the internet, calling around, and filling out applications. So frustrating. I have been so happy with our insurance up to this point...how could they have the absolute worst possible policy on equipment?!?!? We've got PT first thing tomorrow morning so hopefully we'll all get a better night's sleep tonight. We're still waiting to see some improvement in her seizures with the increase in the vigabatrin. Please keep her in your prayers!

Tuesday, July 22, 2008

The Good, the Bad, and the Fussy...

So the insurance drama continues. I had mentioned before that our insurance refused to cover a stander for Reagan. Last week at Reagan's orthopedic appt her doctor mentioned to me that in all of her years doing this she has NEVER gotten United Healthcare to approve a stander. Period. So we took a different route. We started investigating organizations that help in obtaining medical equipment like this. Meanwhile, I was complaining to one of the ECI therapists about all of this and she said that she thought they had some donated equipment that they loan out and she would check to see if they had a stander. Sure enough they do. It's not the same stander our PT was going to order for Reagan, but from what they've told me it seems like it's going to work for her (we'll know more on the 30th when I go pick it up). So that's great news. Now on to the bad. Remember we were also looking into getting Reagan a chair (Leckey Squiggles Seating System) that could be used for feeding as well as proper positioning for therapy (Reagan likes to slump and she also has issues with head control depending on the time of day/medication she's on). This thing is pretty neat (although very orthopedic looking). It can be used a lot of different ways has all kinds of bells and whistles and can be adjusted so that we can use it for a while. The consensus was that our insurance wouldn't cover the stander but that they probably would approve the chair. This has already been a long process and we finally filled out all of the order information (total cost over $6000 RIDICULOUS...these people should be shot!) and submitted it to the Seating company/Insurance. I get a call from them last week saying that our insurance has a $2500/yr cap on DME (durable medical equipment) so assuming they approved this purchase our out of pocket would be $3600!! I don't know about you, but we don't have $3600 in pocket change just lying around!! So what now? I'm not sure. We can pursue further funding options and wait another who knows how many months before we get this equipment. We can get something else...something less expensive and with less bells and whistles (although still expensive). Or we can just suck it up and pay it out of pocket and then hope that maybe we can get one of these funding agencies to reimburse us. I'm almost leaning toward the latter. I don't know. Meanwhile, I did manage to get a little foam chair (tumbleforms feeding chair) on loan from ECI until we figure all of this out. It's funny. I complain all the time about how our ECI program doesn't measure up to other states programs (like CA where they buy all of this equipment for you in addition to providing 100% free therapy), but lately is seems like they are the ones that are actually coming through for us. Reagan's day has been improved compared to yesterday. She was actually in a great mood this morning. She had 3 different therapies today and did fine until the last one (which just happened to be PT). Her PT had told me about this "collar" that she had gotten at a seminar that she wanted to try out on Reagan to help keep her head straight. She tends to want to want to tilt it to one side. So brilliant me, Reagan's happy as can be and I have to ruin it. I asked her about it, so she went and got it and adjusted it to fit Reagan and she tolerated it for a few minutes. There was a lot of moaning and groaning, but she was tolerating it. Then that was it...she was done. The moaning turned into yelling. Session over. I felt horrible. Although it does look like it was helping her to keep her head straighter (during the short amount of time that we had it on). Next time we'll try that at the very end of the session. Of course it didn't help that she had already been through 2 other therapies and was very much due for a nap. She crashed in the car on the way home and took a super long nap. But just like yesterday she woke up SCREAMING. This lasted an hour or so and then right as Daddy walked in the door she stopped. He picked her up and she was OK. She's been a little whiny since but I think she's over the discomfort and just being fussy now. Today was better than yesterday, so hopefully tomorrow will be better than today? Please keep her in your prayers!

Monday, July 21, 2008

Pain in the stomach

Reagan had a tough day today. As I mentioned before...she's prone to gastrointestinal issues and today was no exception. It started around 11, she began to get a little whiny. Then at 11:30 or so she had a movement and went ballistic with non-stop screaming crying every waking second. This lasted 4+hrs. It was horrible. She held her breath 3 times to the point of passing out each time. There was just no consoling her. I'd get her to sleep and the second she woke up she'd be screaming again. Horrible. And then she was done. Just like that, she was fine. Weird. I don't know if it has anything to do with the vigabatrin or not. Who knows. I just hope she's feeling better tomorrow. Obviously there was no chance at occupational therapy today (she's had to miss OT a lot lately for just this reason)...tomorrow's PT so we'll see. I spoke with her neurologist tonight and we're going to slowly increase the vigabatrin. She was at 375mg 2x day. We're going to give her 500mg tonight, then 375mg in the AM and 500mg in the PM. Then by Wednesday she'll be at 500mg 2x day. He's just being cautious since we still are unsure of what caused the twitching. Assuming everything goes well, then we'll slowly increase again and by next Wednesday she'll be up to 625mg 2x day. Please keep her in your prayers!

Sunday, July 20, 2008

Boring

Sorry for the boring posts this weekend. But I guess I'd prefer to have nothing to post than something. It's been a pretty uneventful weekend. We didn't do much to speak of. We did make it to church this morning. Reagan was quite vocal. We tried to give her juice to shut her up but that didn't work. There was a little boy behind us that kept laughing and I think they were feeding off each other. We made it through about 3/4 of the sermon and then had to go out into the lobby. It's so nice to see her so talkative lately. And all of a sudden. It seems like within the last week or so she's really taken off in that area. She makes a lot of sounds (vowel and consonants), including some that resemble words like ada or ady (although she's still not saying anything in a repetitive manner...like da da da da). I think she's always been able to make most of these sounds but previously she did it much less frequently and it actually may have been something that she kind of regressed on for a while. It's great to see her moving forward. I pray that we'll begin to see forward progress in other areas as well. I hope that everyone had a great and restful weekend.

Saturday, July 19, 2008

Lazy

We've been pretty lazy today. I don't know why...we've been getting a full night's sleep nearly every night. I had several things I needed to get done today and didn't really do any of them. Oh well. Reagan has had kind of a rough day today. Twice today I laid her in her crib for a nap (instead of the swing) and both times she awoke screaming like she was in pain. The inconsolable crying. It was obvious her tummy was hurting her but there was nothing we could do but wait for it to pass. Poor thing...she's always had gastro issues from birth and they've never really looked into it (she even had seizures that were triggered by gastrointestinal events). Mike and I have always wondered if maybe that's an area that they need to investigate a little further...but we hate the idea of more testing on her (and we're not even sure what they could do). Anyway she seems fine now. We were actually considering putting her to bed in her crib tonight, but now I'm not so sure.

Friday, July 18, 2008

EEG

Another 8am trip into the hospital (boy am I exhausted)...we've been there 4 out of 5 days this week. Yuck! What idiot scheduled all of these appts for the same week?? Oh yeah...it was me (granted I didn't have a choice about the EEG). Mike took off to come with me because although non-invasive, EEGs are usually pretty upsetting for the kiddos. They have to draw marks all over their heads and then rub some sort of abrasive stuff to "clean" off any oils that might interfere with the signal and finally apply 20+ leads with this gooey sticky stuff. Reagan always cries at some point...usually when they start rubbing the abrasive stuff on her head and always at the end when they remove them and pull her hair. Guess who didn't cry today?!?! I mean not a peep...just like yesterday! OK, maybe a slight whine when they ripped one of the leads out of her hair...but only for a second! Quite amazing!!! SO unlike her. So needless to say the EEG went pretty smoothly. Reagan had plenty of "events"...several spasms and she's still twitching every second or so. Afterwards we paged the neurologist (who apparently popped in during the test to look at the results) and he came by and talked in depth with us. He said that from what he saw (he was going to go back over the entire EEG this afternoon), he definitely thinks the "twitches" are just that twitches. They are non-epileptic myoclonus so they are more like a movement disorder (tics or something) than seizures that negatively affect the brain. It's hard to say right now what is causing them. Could be the vigabatrin...could be her underlying disorder...could be a combination of both. I'm not thrilled living with these constant jerks but for now I guess we don't have much of a choice. He also mentioned that the hypsarrhythmia (the abnormal brain pattern associated with Infantile Spasms) is still present and initially he thought it looked as if it had gotten worse since the last EEG (which would not be good news). But he called us this afternoon after he went over the entire EEG and compared it to the report from the last one she had and he actually thinks it is slightly improved. Whew. So the game plan for now is to keep her at this lowered dose until Monday to see if they improve (then we would know that it was the previous increase of the vigabatrin that exacerbated the twitches). I think we'll probably increase the vigabatrin Monday regardless. We're still at a very low dose and we need to give the vigabatrin a fair shot at getting rid of the spasms (and hypsarrhythmia) before giving up on it. Reagan continues to be just as sweet as can be...super talkative and happy. We're really going to have to get a video of her like this. Here are a few pics for now...



Thursday, July 17, 2008

Genetics Appt

We had the genetics appt this morning and our new neurologist met up with us just so he could see firsthand what Reagan was doing with these twitches. He thinks an EEG is a good idea so we're scheduled for one at 8am tomorrow morning and he's going to let us know the results before we leave (I'm really beginning to like this guy). We spoke with the geneticist, who we've only seen in person one other time, but he seems like a caring guy that's willing to answer any question and he's always been easy to get a hold of by phone (direct line) or email (which is great as far as doctors go). He recommended a couple more blood/urine tests to see if maybe we can get to the bottom of what's causing all of Reagan's issues...although he did say that about 30% of the time you never find an answer. Now to the miraculous...when we went to get Reagan's blood taken (they needed to take A LOT) so we waited for our favorite nurse (who is the only one that can ever get blood out of Reagan's tiny veins) and when she stuck Reagan she never cried! Not a peep. She seemed startled initially and then she just laid there as all of the blood was collected!! Amazing! She ALWAYS cries. And she ended up having to stick her twice because the first time the needle moved and she only got enough blood for one tube. But Reagan didn't seem to mind at all. And the second stick went off without a hitch, she got the vein immediately and the blood was flowing quickly. It was the easiest blood draw to date! It just has to because of all of the people lifting her up in prayer today!! Speaking of...we are done with the fast. It went really well and we're so glad our group decided to do this. It was a very neat experience...one that I hope will continue to touch the lives of many as we see God's promises fulfilled (in due time). We all met up tonight (at prayer mountain at our church), prayed, and then went and stuffed ourselves. I think I ate more than a day's worth of food at one meal...but it was really good food!! Thanks again to everyone and please keep the prayers coming!



Wednesday, July 16, 2008

Crazy girl

Last night was a rough night. Reagan woke up at 2:45am crying and having TONS of seizures...the clusters of spasms and the non-stop twitchy kind. We gave her a clonazepam and the seizures finally quieted down after an hour or so then we put her in the swing awake and we crashed. A few hours later it was time to get up and go to her ophthalmologist appt...so we were a little worn out today. It turned out to be a pointless visit. She looked at Reagan's left eye and said that she thinks the cataract may have gotten slightly bigger. She wants to see her back in 5 weeks to check it again and possibly schedule an "exam under anesthesia" with the likelihood of removing the cataract at that time. Reagan's seizures and twitches continued throughout the day so I put in a call to her doctor with my concerns. Despite it all Reagan was in a great mood today. Almost a little too good. She's been SO vocal, laughing and "babbling" all day...I'm wondering if normal baby behavior or some weird side effect of the medication. After talking to the nurse and then finally the doctor tonight we've decided to go back down on the vigabatrin (from 500mg to 325mg) to see if that's what is causing the twitches. He does think they are myoclonic seizures but said that myoclonic seizures can be either epileptic or non-epileptic so if they continue we may need to do an EEG tomorrow or Friday to see what we're dealing with. Reagan has a Genetic appt at 8am tomorrow morning and he wants us to page him so he can come up and see exactly what they look like. I feel relieved. I just wasn't comfortable continuing the increase with her having seizures/twitches every second!! He listened to all of my concerns and now we have a plan of action I can live with. I guess that's why we changed doctors! We started our fast tonight. As always, please keep Reagan in your prayers and pray for guidance for her doctors!!!

Tuesday, July 15, 2008

Fasting for Reagan

Our Bible study group decided that they wanted to dedicate a day this week to prayer and fasting for Reagan. Everyone knows that we are strong believers in the power of prayer...what a wonderful gift it is for them to all volunteer to do this on Reagan's behalf. We picked Thursday because Reagan has a genetics appointment that morning. We are going to begin fasting at sundown on Wednesday and fast until Thursday night, at which point we'll all meet up at our normal time to have dinner and pray together. I wanted to let our friends and family know ahead of time just in case any of you feel compelled to fast with us. The idea is that while you are fasting, you think about Reagan and lift her up in prayer through the course of the day. Miracles happen every day and that's what we want and are EXPECTING for Reagan. (You have to believe it to receive it!)

Botox for babies

Today was Reagan's follow-up appt with the orthopedic doctor. The last time we saw her she suggested that in addition to the AFOs, Reagan might need botox injections in her calves to help relieve some of the spasticity that is causing her to constantly point her toes. When she suggested it, I thought she was nuts! Botox in babies...are you kidding me?!?!? But since that first appt I've read a lot about it on the internet and talked it over with her physical therapist and I think it might be the way to go. It's a temporary fix (only lasting a couple months) and it will cause her to stop the constant contracting of those muscles (that results in pointed toes) and allow them to relax so that we can fully stretch them using the AFOs. Usually kids get multiple injections over time, but from what I understand it's usually the first injections that you see the most dramatic results from. So it will basically allow us to see improvement that might take a year or two with the AFOs alone. Sounds convincing to me. I'm going to talk it over with her neurologist to see what he thinks and unless he has any major objections, we'll probably have it done late August. Seizures weren't much improved today...about the same as yesterday...still LOTS of twitches. We gave her the clonazepam this morning and unlike yesterday it didn't seem to do anything (except make her sleepy)...she continued to twitch all day long. I'm afraid we might be headed for an EEG before the weekend. She also had a couple of bad clusters and another one of those weird things that resemble a tonic where she tenses up but then it fades and she's just staring down and to the left for a minute or so and you can't snap her out of it. I don't like those either. Please keep her in your prayers. We have another busy day tomorrow with an ophthalmology appt and multiple therapy sessions...it's going to be a LONG day!

Monday, July 14, 2008

Clonazepam withdrawl?

Reagan had a follow-up appt scheduled with the nurse practitioner that oversees the ketogenic diet today...I seriously thought about canceling it because she's really only on the diet now because we're just trying to keep her at a baseline while we assess the effectiveness of the vigabatrin...boy am I glad I didn't cancel it! She woke up again this morning with a serious case of the twitches. These are non-stop (we're talking at least every second) quick twitches in her hands and feet and even blinking of her eye and they continue pretty much all day long. We were thinking that maybe they weren't seizures...maybe they were some sort of tremors she was doing as a result of us taking her off the clonazepam her body going into withdrawal (I've read horror stories about this drug). So we took her in to the epilepsy clinic and she performed...the nurse was VERY concerned about the constant movement. She thinks they are in fact small myoclonic seizures. So basically Reagan's having non-stop seizures. She also thinks that it might be due to stopping the clonazepam and that we should put her back on it...at least once a day. She wants us to watch her the next couple of days and hopefully we'll see improvement with the clonazepam added back. If not, then we may need to adjust the vigabatrin dosage. She said that she's never seen an increase in myoclonics with vigabatrin but our neurologist has so they need to keep an eye on her. We did give her half a pill when we got home and saw a noticeable decrease...so hopefully that's it. The excitement never ends around here. On a positive note, she did have less of the big seizures and she was again an absolute angel today. She's really becoming a sweet girl. She used to be such a fussy butt, she was rarely happy and cried A LOT, but she's been such a good baby lately. That makes my life SO much easier. Now we just have to stop these seizures!!! Please keep her in your prayers!!

Sunday, July 13, 2008

Sunday

Reagan woke up this morning not having a lot of the big seizures but she was having almost nonstop leg/arm twitches...so I finally caved and just gave her a clonazepam. I think it helped a little, but she did seem a little more groggy and irritable today (compared to the especially happy/smiley baby we've seen lately). We took her to church this morning and she was SO well behaved. I was thinking there was no way we'd make it through the sermon because she's just been to "chatty" lately, but she got it all out of her system during the music and then slept through the entire sermon. It worked out perfectly. I am having some issues getting her to eat. I'm not sure if it's at all related to the new medication, but she's just not wanting to drink her bottles anymore. That coupled with the fact that she's not waking up in the middle of the night anymore (so she's missing that extra juice/milk she would drink during that time) and I'm concerned that she's not getting enough fluid. She's supposed to be drinking ~29oz fluid a day minimum while on the ketogenic diet and she's definitely falling way short of that now. She's having less wet diapers and she's still extremely irregular...I guess I'll just have to keep my eye on her. Back to the force feeding! This week is going to be a very busy week with lots of doctors appts and therapy sessions...so please keep us in your prayers!!

Saturday, July 12, 2008

Afternoon swim

Today wasn't exactly the "good" day I was hoping for...seizurewise it was about the same as yesterday. I've heard that sometimes seizures get worse when medications are increased...so I'm hoping that maybe as she adjusts to this new dosage of vigabatrin we'll begin to see some seizure improvement. We also increased her diet back up to a 2:1 ratio, so maybe that will help too. Despite the yuck day of seizures...Reagan's great attitude has continued and she's been such a doll again today. Lots of babbling and smiling, even between seizures, she's just so precious! We finally took her in the baby pool this afternoon and she seemed to like it. The water was nice and warm but the sun was on its way down and the breeze was a little cool on wet skin...maybe we'll try it again tomorrow when it's a little warmer.



Friday, July 11, 2008

Roller coaster

As always I was hesitant to mention the WONDERFUL day we had yesterday because just as soon as you mention a good seizure day...you're slammed with a bad one! But I felt the need to let everyone know that there ARE good days (thank God)...there are wonderful days and yesterday was one of them.This crazy emotional roller coaster we're all on...one day we're up...the next we're down. Today was a down day. A very down day. Reagan has been pummeled with bad seizures all day long. She started off with a tonic seizure first thing this morning and it just continued throughout the day... if she wasn't having a cluster of the twisting ones, she was having non-stop leg/arm twitches. I've had this non-stop knot in my stomach. It's hard to watch. And she's been such a trouper. She's been in a great mood despite it all. And if she can do that, if she can continue to smile through this, then I need to pull myself together for her sake. I spoke with her doctor today and he's of the opinion that we should probably not make anymore changes to the diet...it's just too hard to know what's going on if we're making changes to the medication and the diet. We can either stay at the 1.5:1 ratio or go back to the 2:1 ratio. I'm still not quite sure what to do. I'm leaning toward going back to 2:1 (although I know a day like today can probably skew my decision making). We're going to go up on her vigabatrin dosage to 1 pill 2x day (500mg/2x day). This is the dose we were supposed to be at a week ago but we held off because Reagan was sick and so sleepy. Please keep this in your prayers...we NEED her to have some real, long lasting relief from these seizures.

Thursday, July 10, 2008

Thank you

It's a late post tonight. Let me just start off by saying thank you. Thank you to everyone out there sending a constant stream of prayers our way. Today was definitely an answer to prayers. Despite a rocky start and finish...today still tops the charts as far as good days go. Reagan has been an absolute ANGEL today. She has been smiley, talkative, just an all around dream (and after the rough day yesterday it was just what the doctor ordered)! I was both devastated and frustrated when she started off having a lot of seizures first thing this morning but they faded away about 30min after her morning dose of vigabatrin and then stayed at bay most of the day. Sure she had little ones here and there but they were few (relatively speaking). And then tonight after we got home from Bible study, I was feeding her a bedtime bottle thinking about how wonderful the day had turned out to be...and out of no where she had several bad ones (including a weird 1min long one reminiscent but slightly different than a tonic seizure). But you know what...I refuse to get discouraged...today was a wonderful day and I know there are more to come! We truly believe in the power of prayer and just ask that you would please continue to keep her in your prayers!

Wednesday, July 9, 2008

Deja vu

Thank goodness we had another good night's sleep last night because boy did we need it...today has been a doozy! Everything started out well enough, but right before it was time to leave for occupational therapy Reagan flipped out and began a crying fit that lasted the rest of the day! It was deja vu...exactly the same as Monday...only this time I was smart enough to just cancel therapy and tough it out at home. I'm fairly certain it was due to gastrointestinal discomfort but nothing I did seemed to help in the least. She screamed and cried nonstop, had a horrible breath holding spell worse than anything I've ever seen, and to top it all off the seizures have been persistent. It's hard to not get discouraged on days like these. Nothing gets accomplished and everyone ends up with a headache! I'm praying for a better day tomorrow on all accounts.

Tuesday, July 8, 2008

Happy day

Another wonderful night's sleep last night...although Reagan did wake up a little earlier this morning around 6:45am. I can't quite figure it out because her doctor said that they don't typically see a problem with this medication wearing off, but it really seems like that's what we're seeing. She's still waking up with LOTS of seizures but then has less as the day goes on. And a noticeable decrease anywhere from 30min-1hr after she takes her am dose of medicine (along with the associated sleepiness). We increased the am dose of vigabatrin today so now she's on 750mg/day (with a max dosage being around 2000mg/day), so there's still a lot of wiggle room if we need to increase it further to get better seizure control. Last night she had very few seizures...very few. But tonight she's had a lot more...still less than before...but enough to be disappointing. I refuse to get discouraged though because I know that we are on the right track with this medication. It's going to work. It has to! Reagan has been much more alert today...and happy...very happy...thank God. I think the drowsiness of adjusting to the medication has finally subsided. She's typically sleepy after she takes it, but the sleepiness seems to be fading away more quickly and the accompanying floppiness has pretty much gone away completely. She was very alert today. And she's been super sweet...making tons of eye contact and babbling a lot. So wonderful to see. Seizures or not...today was a good day!

Monday, July 7, 2008

Meltdown

Reagan has been in quite the mood today. She's been so mellow and happy lately but today was another story! I'm not sure what it is...she slept well last night...only waking up once after 7hrs of consecutive sleep and she went back to sleep relatively quickly. The only thing I can think of is that we gave her a suppository last night (sorry for the gross factor but this diet makes her constipated and she had been 5 days without a "movement"). It worked like a charm but I think it gave her some lingering stomach pains because she's been super fussy today. She was fussy this morning but this afternoon right before we left for her occupational therapy session she had a complete meltdown. She screamed and cried the whole way to therapy and then was hysterical for more than half of the session...only stopping when she finally cried herself to sleep. Then all afternoon and night...if she wasn't sleeping, she was crying! Poor thing! Then finally for no apparent reason it stopped and she was fine. I'm hoping the pains have passed and are gone for good...I don't know if I can take two days like this in a row! I spoke to the nutritionist today and we're going to decrease the ratio of the diet even further to 1.5:1. What's odd is I checked her urine ketones tonight and they are still at the highest level of ketosis. Crazy! At a 2:1 ratio most kids would already be in low to no ketosis. We're also going to increase her vigabatrin to 3/4 pill (375mg) 2x a day. She's still having quite a few seizures first thing after waking up in the morning, but they fade away after her medicine and then stay gone (with only occasional ones here and there) most of the day. However you look at it, it's a HUGE improvement and we're very excited about it. I think this may be her medicine. Praise God. Thank you for your prayers and I ask that you would please keep them coming. Our goal is NO seizures!!


Reagan has been in

Sunday, July 6, 2008

Sweet sleep

Last night was BLISS!!! Unbelievable...a miracle really. Reagan slept 10hrs straight (from 11pm-9am)!!!!!!! I woke up this morning in shock and utter disbelief only to find that I wasn't dreaming...Reagan had in fact beaten her longest stretch of sleep (which happened last week) by 3hrs!!! She did wake up having a lot of seizures, although I'm fairly certain it had to do with the fact that she had gone a long time without medication, and about an hour after we gave it to her the seizures subsided. But even with all the seizures she was bright eyed and as happy as can be! In fact she's been in a wonderful mood all day today, very smiley and sweet, although after we gave her the medication this morning she did become noticeably floppy again. I'm curious if it's the vigabatrin or the combination of vigabatrin/clonazepam. I think we're going to wean her completely off the clonazepam soon, so maybe that will help. Her cousin Patrick from Washington D.C. came to visit today. It was his first time to see her and he was very excited about it and gave her lots of hugs and kisses...too cute!



Saturday, July 5, 2008

Sleepy Saturday

Reagan was really sleepy last night so no fireworks for us! Good thing we got to bed early though because she woke up several times last night and then she was up around 5am. She woke up having A LOT of seizures...I'm wondering if the medicine's effect is beginning to wear off before it's time for another dose. So I put in a call to her doctor this afternoon when around 4pm all of a sudden she started having a lot of seizures again (and wasn't due for more medicine until 6:30). We also wanted to let him know what's been going on with her because we're still a little concerned about the constant sleepiness. He said it's hard to tell if her sleepiness is due to the vigabatrin or her being sick, so he doesn't want to double her dose as planned just yet. Right now she's getting 1/2 pill twice a day, so we'll gradually increase it to 1/2 in the morning and 3/4 at night for the next couple days. We're also going to cut out the pm dose of clonazepam since we didn't really think it was doing much anyway (other than possibly making her more sleepy). Hopefully these changes will do the trick for her! So far tonight she's been a little more awake (and feisty) so we'll see. I don't think it bodes well for a good night's sleep.


Friday, July 4, 2008

Happy 4th

I hope everyone had a great July 4th! We took it easy at here at home...spending most of the day eating junk food. Reagan's still not feeling well...she's still really congested in her chest and nose. She had rough night last night and she's been sleepy all day (again I think it's a combination of being sick and adjusting to the new medication). Grandma bought her a baby pool and Aunt Amber was all set to take her "swimming" in it today, but it was overcast and rainy all morning and the water just wasn't warm enough to put her in (maybe tomorrow). She did look too cute in her leopard print bathing suit Amber got her, even if she didn't get to wear it in the water! No word from her doctor today (we weren't quite sure if he was supposed to call us or if we were supposed to call him), so I guess we're just going to keep her dosage the same until we can talk to him about it on Monday. We've definitely seen a decrease in seizures. It's hard to tell how much exactly since she has been sleeping so much, but any decrease is HUGE (since nothing up until this point has even made a dent in her seizures). This medication is definitely a big step in the right direction! We're pretty thrilled about that. Please continue to keep her in your prayers...


Thursday, July 3, 2008

Sleeping beauty

Reagan slept much better last night. In fact, she slept great! Only waking up once from 4-4:30 and then sleeping until 9:30 this morning. Today she seemed to be a little less sick, not nearly as fussy (until tonight), but she's still pretty congested and still so floppy. I think the vigabatrin has to be partially responsible for the floppiness. A lot of these seizure medications tend to do that to these kiddos, at least when they first begin taking them. I'm hoping she'll get better once she adjusts to it (although it may take a while if we continue to up the dosage). I'm wondering if we'll hear from her doctor tomorrow. He mentioned that he was going to be on call on the 4th, so I don't know if that means that we need to call him or that he'll call us. Hmmmmm. It's hard to make a clear determination about how this medication is affecting her seizures right now because she's been so sleepy and sick lately. You see...when she sleeps, she doesn't have seizures. So it would seem that she's having less...but she's also sleeping a lot more than she normally would, so it's just hard to tell. I'm just going to take it as a good sign and expect that we'll continue to see less and less on this new med. Thank you everyone for your prayers and I just ask that you would please keep them coming...


Wednesday, July 2, 2008

Still sick

Poor baby! Reagan is still soooooooo sick! She has been doing a lot of moaning and groaning today. I put in a call to Reagan's pediatrician first thing this morning, called the office again this afternoon, and then never heard back from her! I'm going to be SUPER angry if she's not in the office tomorrow because of the upcoming holiday! I could have dragged Reagan up there today, but she was already miserable and I didn't want to risk her picking up something else at the doctor's office. The thing is...even if she wants to put her on antibiotics (which is unlikely because most doctors are afraid to prescribe them now)...Reagan can't take the typical medicines that most kids take because she's still on the ketogenic diet (and those meds are full of carbs)...what a mess! I hope it just passes and soon! Last night was miserable for everyone. I tried to make her comfortable...I covered her in vicks and put a vaporizer right next to her swing...but she was waking up a lot...sometimes as often as every 10-15min. I've really gotten spoiled with her sleeping so well lately. It killed me having to get up so much last night (especially since I'm feeling a little cruddy too). She's been wearing her AFOs...just not as often as she's supposed to. We've made it up to 4hrs a day (2am/2pm) but I don't have the heart to do any more right now while she's feeling so yucky. I figure she's uncomfortable enough as it is! Please keep her in your prayers...

Tuesday, July 1, 2008

Begin Vigabatrin/ SICK

Well here we are...another day...another medicine. Another chance at seizure freedom. Today we started Reagan on Vigabatrin (and decreased the diet down to a 2:1 ratio). We have the pills, so I'm crushing them and trying to dissolve them in some "juice" and then giving it to her in a dropper. She doesn't like it but she takes it reluctantly. I doubt this is the best way to do it, but it will have to do for now. I'm afraid to just add it to her bottle because how can I really tell if she gets it all? Even the way I'm doing it now some always sticks to the cup that I dissolve it in...I guess you just can't win. And to top it all off...she's sick. Yes, definitely sick. I actually can't remember the last time she was this sick. All day she's just continued to go further downhill. The poor thing, you can just tell she feels absolutely miserable. She can't breathe! Her nose is all stopped up and runny. She's running a low grade fever. Occasionally she'll let out a sad little cough or sneeze. I feel so bad for her. We went to therapy today and she cooperated but her heart wasn't in it and she was just SO floppy and tired. I think we'll probably take tomorrow off and just stay home and try to get her feeling better. Please keep it in your prayers that she'll get over this illness quickly and that we'll see some improvement seizurewise with this new course of treatment.