Wednesday, April 30, 2008

Another one

Well, it happened again. I can't tell you how much we were praying that it was just a one time thing, a fluke, something that happened as a result of increasing the Felbatol. And maybe it still is, maybe the Felbatol is still the reason for it, I guess we won't know until it's completely out of her system. But Reagan had another bad seizure this morning. She woke up around 7:30 and was fine and happy, having her normal seizures here and there, but otherwise fine. But around 8:10am she had a cluster that was just a little too clustered and the next thing we knew she was all tensed up and shaking again. Her eyes were rolled back, she definitely wasn't alert. Even after it finally stopped (after what seemed like eternity), she seemed very dazed and "floppy" for a while. We're still not quite sure whether these new seizures are tonic or tonic-clonic seizures, but I can't even begin to describe how much worse they are than the spasms we're used to her having. Thank God Mike had taken the day off today to come with us to Reagan's ophthalmology appt this morning. The appt wasn't until 10:10, so we went ahead and took her in for her 1 month post-op check-up. Reagan's right eye that was operated on looks perfect and the left eye that has the smaller cataract still looks the same (it hasn't grown any, so she's just going to have her come in every 3 months to check on it). She gave us a new prescription for Reagan's glasses and we're going to have those fixed and try to get her to start wearing them again. That should be an interesting task. She also said that we can start trying to patch her eye (patch the left to strengthen the right) approx 2 hours a day, when she's the most visually attentive. Well, that's all the news I have for now. I just ask that you would all please keep Reagan in your prayers.


As you can see...in spite of it all she's still just as sweet and happy as can be!

Tuesday, April 29, 2008

Bad seizure

Updated-
Reagan woke up very fussy this morning around 6:20am. I tried to feed her a bottle, she drank about an ounce, and then started fussing again. She had a cluster of seizures (like those in the latest video), but the "aftershock" seizures were doubled up and she kept having them. Then she just started shaking all over. We're not really sure how long it lasted (it seemed like eternity), initially we thought ~2minutes, but it was probably closer to 1minute. It was the scariest thing ever! I guess it was what you would call a tonic seizure...I don't know. All I know is I don't like it and I never want to see another one of those! She fell asleep afterwards and slept like a rock for about 3hrs (she slept through her OT appt). When she woke up she had her normal seizures but not any more of the bad ones (thank God). I called the doctors office as soon as they opened and the nurse practitioner called back about an hour later. She doesn't seem to think it's the Felbatol (but they didn't think the ACTH was responsible for her intense seizures, but as soon as she was off the ACTH they went away). I told her we want her off this medication. Period. If we take her off and the seizures continue, then maybe it wasn't the Felbatol. But right now I'm not willing to take any chances. They want to still wean her off slowly, so she'll be at 1ml 3x day for a week and then 0.5ml 3x a day for a week. That should make her drug free right as she starts the Ketogenic diet. Reagan was fussy for most of the morning (who can blame her), but I still took her to her PT appt this afternoon. It turns out they just stretched her the whole time anyway and Reagan cried the entire time, but she doesn't like being stretched and would have cried even if she had come in a good mood. She came home and took a nap and has been happy ever since! She's pretty wiped out, she's slept quite a bit today, and as a result she's VERY low on her formula intake. I guess that's the least of our concerns right now. We're living in fear of her having another one of those seizures, I hold my breath every time she starts having a cluster! Please keep her in your prayers!

Monday, April 28, 2008

Bracelet

Reagan woke up every hour or so last night...I don't think that late night nap helps much (I say as she's taking one right now). The thing is, if she's sleepy, she's usually fussy and you want her to sleep. The last thing you want to do is force an irritable, fussy baby to stay awake!! She did have a good day today, she was pretty much happy all day! Too bad she didn't have any therapy scheduled for today! Speaking of, she's got ECI occupational therapy tomorrow morning and she's starting back with her private physical therapy tomorrow afternoon. Please pray for her to be cooperative so that she can have a productive day tomorrow! I spoke with the nurse practitioner today and she wants to continue to increase Reagan's Felbatol dosage. She said with this next increase, she'll be at a dose high enough to have some therapeutic effect (if it's going to work at all). I guess we're just going to follow their suggestions and hope for the best. Maybe things have to get worse before they get better?!?!

On a side note...I posted a link at the bottom of the blog where you can buy a beautiful Epilepsy Awareness Bracelet (part of the purchase price goes to the Epilepsy Foundation). Jenelle's mom actually contacted the lady that makes these bracelets and asked her to make one for Epilepsy (you can read more about Jenelle's journey through the link on the bracelet website or the link posted on this blog). There are two different bracelets honoring Epilepsy Awareness, I ordered the cane glass one a few days ago...an early mother's day present for myself. I've always loved bracelets, I have tons of them, but this one is special and serves as a reminder to everything that Reagan and all of these other children go through on a daily basis.

Sunday, April 27, 2008

Back to church

Reagan took a long nap yesterday afternoon (she's taking one now as I type) that may have messed up her schedule a little. She was up a lot last night and then finally slept from 5-8am. Mike's parents were in town and stopped by to visit this morning and saw an extremely happy and smiley Reagan. Afterwards we made our first trip to church since starting ACTH. Reagan made it through a little more than half of the service and then grew antsy just as the pastor was making his point. We tried to listen to the rest of the service from the entry way, but it's hard to concentrate. Oh well, I can go back and watch it via internet later this week. Reagan's actually had a pretty good weekend (temperament wise). The amount of seizures she's having is still really bothering me and I'm going to put in a call tomorrow morning to talk with the nurse practitioner about it. I just wish she was starting the diet sooner. I know there are no guarantees it will stop the seizures, but I really think this is something that she is going to respond to. I just hope we can get her to eat enough! I've cut back her solid foods from 4x a day to 1-2x a day and it hasn't affected her intake of formula at all. She's actually been drinking less formula than before. I don't know what more we can do! She's so stubborn (I don't know where she got that from), if she doesn't want it, you can't make her drink it!!




Kisses from Bear!

Saturday, April 26, 2008

Rest needed

Reagan is back to sleeping like she used to...still not great but definitely better than the nights she was waking every 20min or so all night long. She usually sleeps the longest during the first stretch, anywhere from 2-5hrs, and then she'll usually wake up every 1-1.5hr or so after that. She's been good today, still having a lot of seizures, but otherwise good. They are worse when she first wakes up (typical for infantile spasms), that's when she'll have one after another after another, usually for 30+minutes. I hate it. Today we did manage to take a little break and my mom watched Reagan so Mike and I could play golf. That's right, both of us. Mike plays every weekend, but I haven't played since I was about 4 months pregnant (or really done any sort of outside activity), so it was good for me to get out. But now I am totally exhausted and I'm sure I will be hurting tomorrow. I just hope Reagan has a good night because I could use the rest!

Friday, April 25, 2008

New seizure video

Today has been an alright day. Reagan has been a little whiny, but whiny is better than crying! She has been having a lot of seizures though. They have changed a little and I'm not sure if that's because of or in spite of the Felbatol. I videotaped them today so we have documentation of what they look like now. She's having a lot of little spasms, where just her arm or shoulder will jerk. I'm glad that she's not having the huge ones anymore...but I don't know if these subtle ones are much better because they are so frequent. And she's also having these clusters where she'll have a bigger crunch, her eyes will roll back and it seems to leave her a little dazed, and then she'll have several small jerks that follow it (see video). These are my least favorite. Before she never seemed phased at all by her seizures, if anything she would just smile after having one. Now she seems really stunned for a few seconds and I don't like that at all. I don't know if this change has anything to do with the Felbatol or not. Supposedly, she's still on a fairly low dose...but I think at this point we should begin seeing some sort of improvement if it is going to work at all. I just want something to work! Zonegran was the only medication that has ever had any positive effect on her spasms. I remember when she was on it and only having ~30 spasms a day...about 10x less than she has now! But the thing is...any spasms (no matter how few) are still significant and can affect their development. Please keep her in your prayers...


video

This is just a small snippet of spasms she had during this ~30min cluster. When the spasms are this frequent it's hard to tell where one cluster ends and the next begins. I figured this was enough to show everyone what I am talking about. It's hard for me to watch and I see them all day long...

Thursday, April 24, 2008

Hungry?

Hungry? I'm always hungry...Reagan, not so much. I spoke with the dietitian today about my attempt to get Reagan on a feeding schedule. Set times are really out of the question, since she's still not on any sort of sleeping schedule, but I have been spreading out her bottles every 3-4 hrs and only giving her 30min to finish. Basically, it has just resulted in her eating less, going from ~20oz a day to ~16oz a day (which I knew would happen). The dietitian is concerned with this latest development, she's worried that she won't get enough fluids to stay hydrated on the diet, since it has a diuretic effect. One issue is that Reagan has never been much of an eater to begin with and a common side effect of Felbatol is appetite suppression, so that's working against her as well. We may have to look into giving her an appetite stimulant just so they will let her go on the diet! I'm going to begin keeping track of her juice intake as well, so we know exactly how much fluid she's getting each day (although I already know it's less than what they want her to get). I think we're going to end up having to fight them to put her on the diet, but we're willing to do whatever it takes. On a good note...Reagan slept 5hrs straight last night!! Granted, she didn't actually go down for good until 12:45am, but she didn't wake up until 5:45am. I'll take that any day. She also managed to make it through her therapy session this morning without crying the entire time. She was whining and fussing right before the PT showed up and I was afraid that the session would be shot, but Grandma talked to her over the phone and Reagan perked right up. So it turns out Reagan's white cell counts are still a little low. I'm not sure why the nurse told me they were OK, maybe she didn't even really look at them, I don't know (it was my favorite nurse). Regardless, I think we're still going to begin transitioning her back to normal, we're already planning on going back to church this weekend and she's going to start back with her private PT sessions next week.

Wednesday, April 23, 2008

Free to go

Today was another good day for Reagan, which is good because she was really testing my patience yesterday! She is really chatting it up again tonight! (We're going to have to get it on video, it's so cute!) I did find out the results of the blood test today and her counts are where they should be, so we're free to go out again! The immune suppressing effects of the ACTH are finally gone. They also said that the liver panel and other things they check for the Felbatol look good. So we are going to increase the Felbatol again tomorrow. Not as drastic an increase as the last time when we doubled the dose. She'll go from 1ml 3x a day (360mg/day) to 1.5ml am, 1ml noon, and 1.5ml pm (480mg/day), which is still (supposedly) considered a low dose. We'll see. We haven't necessarily noticed a significant decrease in the number of seizures, but we have definitely noticed a decrease in the intensity. She's not flying out of our arms anymore but she's having a lot more of the subtle spasms where just her shoulder or arm will twitch. Unfortunately, they still occur in a fairly significant manner, where she'll have a stronger crunch forward and then have several twitches that follow right after. She also seems more dazed afterwards than she used to. I really hope the ketogenic diet works. I'm so sick of these seizures and what they are doing to her.

Tuesday, April 22, 2008

Back to normal

The honeymoon couldn't last forever. Reagan was such a sweetie last night, I didn't mind it in the least staying up with her past midnight. She even slept fairly well. But today things returned back to normal. We took her in to the hospital first thing this morning to get her blood levels checked (they have to check it every 2 weeks while on the Felbatol). When they were monitoring it while she was on ACTH they were able to just do a finger stick, but now that they're having to check the levels of the drug in her system they need more blood and have to do it from her arm (in which case the weekly blood draws on the ACTH seem like a piece of cake). She is a VERY hard draw. They always poke her and then have to fish around in there to try to find the vein, and that's when they actually find a vein. It's painful for everyone involved. So needless to say she wasn't in the best of moods when we left the hospital. She did finally take a short nap but woke with a vengeance! She cried NONSTOP for more than an hour. I thought I she was going to drive me insane (I know, I know, it's a short drive). The worst part was the breath holding...she was constantly purple! She finally wore herself out and I was able to get her back to sleep for a short while. Luckily that was what she needed because she woke up in a much better mood. She did get a little nasty again tonight, but she eventually got over it. I just hope she cooperates tonight, we could all use a little sleep!

Monday, April 21, 2008

Another good day

Two days in a row!! Reagan has been just wonderful the last two days. Although she was up quite a bit last night, she was in good spirits and then slept in a little this morning to make up for it. She has just been so happy, it really has been a pleasure to see her this way (especially after the horrible night she had Saturday night). She was so funny this afternoon, she was squirming and kicking her legs around so much that she nearly climbed right out of Mike's arms! When she's like that you'd think you could put her on the floor and she'd try to crawl all over the place, but that's not the case. She'll usually just lay there. Sometimes she'll move her legs but without the help of her arms she just scoots forward on her face a little. If only we could get those arms working. That's what's funny, she used to push up on her arms a lot more than she does now. I think it's one of those things that she has regressed on since her seizures started up. A few people commented on how well she bears weight on her legs, but she's always been like that. Her legs have always been so strong, when she was only a few months old she was able to bear most of her weight, Mike would stand her up in his lap like a big girl. But lately she keeps her toes pointed all the time and she only wants to stand on her tippy toes (or she'll even let her feet roll over) and her poor little calves are really tightening up. She's got an appt with an orthopedist on May 5th so they can look into that. She may need some sort of splint to loosen that muscle up and encourage her to stand flat footed. She has been so talkative tonight! It's so cute, she's really trying to communicate. She's just been going on and on, with no sign of sleepiness! Oh well, I could stay up all night listening to this!!

Sunday, April 20, 2008

Day of rest

Today has been an uneventful day...thank God for that! (Thank you for your prayers and posts of encouragement.) We all needed a break after last night. Actually, Reagan ended up having a pretty good night's sleep last night. She must have worn herself out. Today she's been great. Happy all day. She's of course still having seizures, but none of the crying afterwards like last night. That was scary. She would finally calm down and then immediately have another seizure and begin the cycle all over again. Mike was holding her trying to comfort her and he noticed her legs were all tensed up and her little feet were shaking. It was almost like she was in a constant state of seizing. I'm so glad she finally snapped out of it. I don't know if it had any effect or not, but I gave her a Clonazepam and not too long afterwards she finally calmed down. Today I have been trying to get her to eat on more of a schedule. I actually tried it yesterday as well, but she only ended up getting 15 oz down all day because of the rough night she was having. Today it looks like she's going to make the full 20 oz. I'm not really making her eat at set times, but I am trying to get her to drink her bottles at 3-4hr intervals, and I try to get her to drink the entire bottle within 30min. We'll see. Hopefully I'll be able to get it all worked out before she begins the Ketogenic diet, because they're a little nervous about her getting enough nutrients/fluids each day.


Saturday, April 19, 2008

Sometimes this is just so hard...

Well, I should have known it was coming. Yesterday Reagan was such a sweetie, she was even pretty good this morning, but she has really turned it on tonight! What bothers me is that it's not just the crying fits like we've been seeing the last few days, where she was pretty much crying all the time irregardless of her seizures. Tonight she's having these strong seizures that really seem to jolt her whole body and then leave her in a stunned state for a few seconds and then she screams out like she's in pain and cries inconsolably. It's so hard to watch her like this. I just want it to end. I want these seizures to stop. This whole thing is like a bad dream that I'm just waiting to wake up from. I can't stand to watch her go through this. I guess it's worse for me, because I'm with her 24/7, but I'm so sick of it! People say, "I don't know how you do it" or "Reagan's so lucky to have you as her mother"...but the truth is I just do what I have to do to make it through each day. It kills me to watch my baby go through this! And I still lose my patience with her and with this situation we've been placed in. I hope and pray for the day when she's going to beat all of this, when this will be nothing but a memory of a difficult time in our lives that we've overcome, but at the same time I know of kids that never do beat this. But I have to believe that she IS going to beat this, that God has bigger and better plans for her and that someday (soon) these seizures are going to be nothing but a thing of the past. This is what keeps me going. But sometimes this is just so hard...

Friday, April 18, 2008

Too precious

Well, God must have had pity on us after what we went through yesterday, because Reagan has made a complete turnaround today! Last night she slept fairly well, waking up a little fussy once, but Mike was able to calm her right down. And then today she has been such a sweetie, as happy as can be! Smiling, laughing, just an absolute doll, I couldn't have asked for more! So thank you for all of the prayers, because it has saved our sanity! (OK, maybe it's too late for that, but you know what I mean!) I spoke with the dietitian today that oversees the Ketogenic diet and she wants us to put Reagan on a feeding schedule. As many of you know Reagan has never been one to gulp down her bottles, we just try to get her to eat whenever she is receptive, which usually results in her drinking an ounce here, two ounces there, and so on all day long (averaging about 20 ounces a day). We are going to need to get her to take 4-5 ounces at a time (5x day) and she's going to have to drink it within 30 minutes or she won't get anything until the next feeding. This should be interesting. I'm going to give it a try this weekend. They also want to put her on strictly formula to begin the diet because they are concerned about her getting enough fluids to stay hydrated and avoid becoming too ketotic. I understand where they are coming from, but I don't like the idea of stopping solids altogether. She said they would eventually work solids back in, but probably not for 2-3 weeks at the earliest. I'm curious what others think about this (especially those who have already been through the diet)?

Thursday, April 17, 2008

Rough day (and night)

Wow...it has been quite a day. Last night wasn't any better. Reagan finally went down at about 11:30 and woke about an hour later crying. She was hysterical and inconsolable. She didn't stop crying until she fell back asleep. She kept this up ALL NIGHT LONG. Then this morning she was calm for one hour from 8-9 but just in time for her PT appt she went crazy again and cried the entire time the therapist was here. The PT never even attempted to pick her up and work with her at all because she was so upset. She did this all day until around 3pm or so and since then she's been OK (knock on wood). Now, Reagan has always been a fussy baby...but this was different. It was screaming crying with real tears! I think it has to be somehow related to doubling her dosage of Felbatol yesterday. Her epileptologist thinks it's unrelated and that maybe she's getting sick, but I think it's just too coincidental. One of the fairly common side effects associated with this drug is constipation, which could definitely be responsible for the abdominal pain. So after talking it over with her pediatrician today, we're going to try giving her some Miralax in her juice. I sure hope it helps because I don't know if any of us can take another night like last night. PLEASE keep this in your prayers!!!

Below are the before and after photos I promised.

The day she started ACTH: still pretty scrawny



One week post ACTH: not her best pic, but you can tell she's filled out

Wednesday, April 16, 2008

Sleep at last!

Last night was wonderful! Mike's sister Julie was kind enough to volunteer to stay up with Reagan so we could get some much needed rest. She took Reagan upstairs, so we never heard a peep! Thankfully, Reagan was well behaved for her. She slept for about 3 hrs, then woke up off and on from 2-4am, then slept til 7. That's a pretty good night for us. Today has been a so so day. Reagan was a little fussy this morning, then finally took a good long nap this afternoon and was happy until around 9:30pm, when she turned into psycho baby! She's obviously over tired, but she's refusing to go to sleep. One second she'll be screaming crying holding her breath and the next second she'll be smiling and laughing. She's NUTS!! We're actually still trying to get her down and it's almost 11pm. Wish us luck!

Tuesday, April 15, 2008

Good day

Let me first apologize for the last 5 posts being all about sleep or lack thereof. It has kind of taken over our lives lately. Reagan did sleep a little better last night (without the melatonin). Tonight is going to be a real treat for us, Reagan's Aunt Julie is going to come over and do night duty for us. I feel bad, because she has little ones of her own to take care of, but she's insisting so I guess we'll just try to enjoy the extra sleep. Reagan has been in such a good mood today. She hasn't had any scheduled therapy sessions today, but I've worked with her quite a bit and she's tolerated it really well. She's been babbling and laughing like crazy all day! I just laid her down for a nap and she was even laughing in her sleep! Too cute! She has really put on some weight recently. She's outgrown outfits that she just got for her birthday not even a month ago. I think it's because of the ACTH. With her being on the low dose protocol, we never saw any of the typical side effects while she was on the medication. But I think the weight gain/puffiness is just now hitting her, kind of a delayed reaction. We'll have to post a before and after picture so you can see what we're talking about.

Monday, April 14, 2008

No really, what is sleep?

Last night was a rough night for all of us. Reagan was SO fussy, there was no consoling her! As far as sleep goes, we tried the melatonin again and no luck. I'm beginning to think that it's having the opposite effect on her. She's been sleeping even less than before. Last night she was seriously waking up every 20minutes or so!! Tonight we're going to forgo the melatonin and go back to the Clonazepam. Hopefully we'll get a little sleep! On a good note, Reagan was in a great mood today and no breakdowns so far tonight. I did finally make an appointment with the new neuro (in the same practice), but apparently he only sees new patients once a week, so the first available appt is in June. I booked it, but told them to call if there are any cancellations. We're still considering taking her out of state for another opinion, but that will probably take even longer to get an appt.

Sunday, April 13, 2008

Still no sleep

Unfortunately, the melatonin didn't work last night either. As I mentioned before she was VERY irritable last night, I think it was a combination of constipation and gas. It's so difficult to see her in pain like that!! But today she ate some prunes then took care of some business and has been in a pretty good mood most of the day although she hasn't really taken any naps longer than 15min all day...we'll pay for that tonight. We're going to try the melatonin again tonight...who knows, maybe the third time's a charm?!?! We have pretty much decided everything we have done up until this point has been wrong. Not putting her in her crib, giving her juice/milk in the middle of the night, picking her up when she cries, we wish we would have done things differently from the get go. That's not to say that she wouldn't be having sleep issues anyway, because lack of sleep seems to be a common complaint among parents of kids with seizures, but we wouldn't have nearly as many bad habits that need breaking. We know eventually we're going to have to let her "cry it out", but I don't think I can do it until she's having less seizures (because they are partially responsible for waking her up at night). It's tough, we all need sleep, but how do we get there?? Oh...and as far as we can tell, she's not teething. Here she is one year old and no teeth. I guess in a good way, at least she doesn't have anything to bite down on and hurt herself when she has a seizure. We've thought many times that she's teething, we've even found little bumps in her gums that looked promising, but then they fade away leaving no teeth behind!

Saturday, April 12, 2008

No sleep

Well, I hate to disappoint, but the melatonin didn't work. Reagan probably slept worse than usual last night. We're going to try it again, but after last night I'm not too hopeful. Reagan was in an exceptionally good mood today, she was smiley and happy all day long until tonight. She began having abdominal pain again and has been crying non-stop! Poor baby, I don't know what to do for her. Mike and I just keep trading off, but she's not getting any better. I'm afraid it's going to be a rough night...


How cute is this quilt made especially for Reagan!?!? Thank you Teresa!!

Friday, April 11, 2008

Sleep?

Last night wasn't a good night sleep wise. Reagan kept waking up a few times an hour, she'd go back to sleep eventually, but it was exhausting! I want to thank everyone for the suggestions about the melatonin, I'm very interested in seeing how it works tonight. We ended up with the 1mg sublingual melatonin from GNC. I crushed it up and put it in her pears tonight. I haven't been very good about giving her the clonazepam at night. I don't really think it's doing anything to help her seizures or sleep, so I may stop giving it to her now that we're trying the melatonin. On the seizure front, no difference yet in the total number of spasms, but the intense ones seem less frequent probably because she's finally off the ACTH. It's funny, you hate to say anything because you don't want to jinx it (parents of kids with seizures know where I'm coming from). It's like a perfect game in baseball (I only know this because Mike watches a lot of baseball). When a pitcher is pitching a perfect game, no one talks about it, not the players, not even the announcers. It's funny and seems ridiculous, but I can relate.

Thursday, April 10, 2008

Melatonin

Last night went a little better than the last. Although Reagan had a horrible morning yesterday, she was so good last night! She did wake up at 4am and cry inconsolably for an hour, but then she went back to sleep until 8:30am. She woke up and was in a great mood until 9am when the physical therapist came and then the crying started up again. I'm pretty sure that was just because she didn't want to be stretched, because as soon as the PT was finished the crying stopped! I don't know what's going on with Reagan, she's typically pretty fussy, but not inconsolable like this. I spoke to the nurse practicioner today and she said that she didn't think it was the Felbatol...but she didn't really have any suggestions as to what it could be either. It's hard to tell what's causing it...Reagan has had a lot of gas lately, but that could be because she's swallowing a lot of air with all of the crying! I'm stumped! I also asked the nurse practitioner about giving Reagan melatonin to possibly help her sleep at night and she said we could try it (1mg at bedtime). I am curious for those of you who have used it...what kind did you use? I see there are 1mg tablets that dissolve under the tongue, there are 3mg regular tablets, and there is a liquid as well. I'm not sure which to try (or where to get it), please let me know if anyone has any suggestions! I'm dying to try it!! Other than the episode this morning and another tonight when she was overly tired, Reagan has been pretty good all day! Still having a lot of seizures. The nurse practitioner said the earliest we could expect to see an improvement with the Felbatol would be next week after we increase it again (or it may even take another increase after that)...please keep this in your prayers! It's so difficult to watch her having so many seizures right now.

Wednesday, April 9, 2008

Ophthalmology appt (1 week post-op )

Let me apologize beforehand for the long post...but Reagan has just been SO difficult lately! Last night starting around 2-3am, she started waking up crying every 20 minutes or so! Then at 7am she woke up and cried for a solid 30min until she was so exhausted she fell asleep in the car. She had an 8:30am appt with her cataract surgeon (which we almost missed because we got stuck in traffic on the way there). My step mother came in from out of town to help me take Reagan to this appointment, which is a good thing because Reagan was quite the handful. The doctor looked at Reagan's eye and said that it looked good. We go back in 3 weeks to have her eyes dilated and checked so she can get a new prescription for her glasses (we won't start the patching until she gets her glasses adjusted). Anyway, Reagan proceeded to cry the entire time we were there. Since she's been so very fussy lately I decided to stop by the epilepsy clinic to see if they wanted to go ahead and get her labs done now instead of waiting until next week (just in case something was going on internally because of this new drug). The ever so sweet nurse came out and told me that our doctor "wasn't worried about it" and that he had told us when we discussed putting her on this drug that irritability was one of the side effects! Not true!! I would have remembered that! Then she sarcastically remarked...you can have irritability or you can have seizures! How about both?!?! Reagan's having TONS of seizures right now, they haven't even begun to taper at all since starting this drug, although she's still at a very low dose (if she's this fussy at a low dose...what does that say about a high dose). Anyway, she also mentioned to me that she was checking into us getting a "second opinion" from the other doctor within the practice (who is from Boston and has been recommended to me by several people). Well, my heart sank! This nurse HATES me and now she knows that we want to see this other doctor!!! I'm sure she ran straight to Reagan's current doctor and let him know all about it! The thing is...we don't want a second opinion...we just want a new doctor, someone who is willing to take more interest in treating her!!! I explained all of this to our pediatrician today when I called her panicked that she had spoken with this nurse! The pediatrician said that she had called several times and left messages for the new doctor to call her directly, so she wasn't sure how the nurse got involved! Needless to say, I've got a call in to speak to the nursing manager, someone's got to report this lady! Anyway, we did get the blood drawn, so I guess we'll hear back about that tomorrow (hopefully not from her). Reagan continued to cry until we finally left the hospital, but when we finally got home she woke up happy and has been that way ever since!! I'm just praying for a better night tonight, we all could use some rest!!


Tuesday, April 8, 2008

First day off ACTH

I wish I could say that I have wonderful news to report about less seizures already, but they are still very frequent. I counted during a one hour period when Reagan had just woken up from a nap and she had 4 clusters during that time (34 total spasms). Needless to say, that's a lot. Although, I don't necessarily think we'd see a difference just yet...she's been on this medication for a while and this is only her first day off of it. Tomorrow we increase her dose of Felbatol from 2x a day to 3x a day (although it's still a very low dose). She's got a 1 week post-op appt tomorrow morning with her eye doctor. I do think we've noticed an improvement with her eyes since the cataract surgery. It could be in my head...but they seem to be working together better than before (and less crossing). Below is a picture of Reagan in one of her Astros outfits (yes, she has several). Yesterday was the home opener and they won...tonight's game didn't turn out as well. That's her "I can't believe I dressed up for that" face.


Monday, April 7, 2008

Day 14 wean (10 units)

Well, Reagan's bad mood has continued (of course if I was having that many seizures I'd be in a bad mood too). She was up a lot again last night and she was not a happy camper! If it's the new medication, I really hope she begins to mellow out soon because I don't know how much more of this I can take!!! Today was Reagan's last shot of ACTH. It's been 7 weeks of daily injections and unfortunately nothing good came of it. But we are going to miss our nurse (and so will Bear, he enjoyed the extra attention)! It was nice having an insider in the epilepsy clinic to bring us lab slips and to ask questions...not to mention she was a really sweet lady! We took a few pictures of Reagan taking a nap before the shot (the calm before the storm). Notice how she's literally hanging out of the swing! We're not going to be able to use it too much longer!


Sunday, April 6, 2008

Day 13 wean (10 units)

Reagan was up a lot last night (Mr. Hyde), so we were all a little tired this morning. To top it all off...she's been in a HORRIBLE mood most of the day. I'm not sure what it is, usually kids are irritable while on ACTH, but not when they're getting off of it?!?! In the height of her fussiness, Mike ran off to the golf course and left me home alone with the little tiger. Luckily, my mom came over to help out...and guess what, Reagan was good while she was here and then reverted back to crazy baby once she left!! I'm afraid tonight's going to be a loooooooooong night!

Saturday, April 5, 2008

Day 12 wean (10 units)

Only 2 more days of ACTH left!! Reagan's thighs will be so happy!! We're really hoping we'll see her seizures decrease once she's off of it. When we decided to put her on the ACTH, we were anxious to see if it would work and nervous about the side effects...but we never even considered the possibility that it would increase her seizures!! We have noticed she's looking a little puffy lately, especially in her cheeks and thighs. So we weighed her last night and she weighed 19.82lbs. She was 17.75lbs 7 weeks ago when she started ACTH (2lbs isn't a lot for a baby on ACTH to gain, but for Reagan it is a lot!). I'm interested to see if she's going to maintain that weight or lose some of it when she's off the medicine. She was in such a good mood this morning...just as sweet and happy as can be! But this afternoon, she's been crazy psycho baby, fussing and crying non-stop!!! It's funny, she did the exact same thing yesterday. I'm not sure what it is, but it's like she's Dr. Jekyll and Mr. Hyde!! I'm hoping she'll sleep well tonight, because you never know who she's going to be when she wakes up!

Friday, April 4, 2008

Day 11 wean (10 units)

Not much exciting news today. Reagan is one day closer to being off the ACTH...which is good because her seizures are VERY frequent right now. I'm really hoping that it's the ACTH and that once she's off of it we'll see a decrease. I did talk to the nurse at the epilepsy clinic today about getting Reagan onto the Ketogenic Diet. At first she didn't want to commit to a date...she was saying that we need to wait and see how Reagan does on the Felbatol. But I explained to her that the only reason we agreed to try the Felbatol is that the doctor told us it was something she could begin while waiting to start on the diet. So after going back and forth a few times, she agreed to put Reagan down for the first available slot...May 11th. This way at least we'll already have an idea about whether or not the Felbatol is working. My only concern is she's already scheduled for a MRI/MRS/lumbar puncture on May 7th... I hate to postpone it any further, but it does sound like a lot to go through in a weeks time. They would admit her to the hospital on a Sunday and keep her/us there for a minimum of 4 days to begin her on the diet and monitor her level of ketosis and teach us how to do the diet once we go back home.



Thursday, April 3, 2008

Day 10 wean (10 units)

Reagan had a good night last night. She went to bed around 10pm and didn't wake up until right before 3am. Again...almost 5 hours...we're pretty thrilled about that. An ECI physical therapist came by today but Reagan was NOT cooperating! She worked with her for a few minutes and she'd start crying, I'd finally calm her down and we'd try again and same thing. Then the doctor's office called towards the end of the session and we just cut it short. I hate that, especially since she's getting so tight in her legs, she really needs this therapy! The nice thing about the therapy through ECI is convenience...they come out to your house, which is great because Reagan usually cries in the car. The bad thing is they only come once a week, are always short staffed, and cancel often. I can't wait for her to be well enough to go back to private therapy. There she gets PT twice a week and OT twice a week and they almost always work with her the full hour. So the call that I got during the therapy session was from the dietitian in the epilepsy clinic calling to talk to me about Reagan starting the Ketogenic Diet. When we spoke to the doctor at her appt the other day he made it sound like we could start her on it soon, we were just waiting to get her of the ACTH. Apparently that's not correct. They start the diet in the hospital so they can monitor the child closely and they usually like to do only one child/family at a time (1 a week). They are booked through the beginning of May, so it's looking like she may not start it until the end of May (unless the doctor thinks she needs to start sooner). She mentioned that they usually start babies on formula only (a special formula at a 4:1 or 3:1 ratio)...because it's easier to do. I'm not thrilled about that because 1)even with Reagan eating better as of late, she's still not drinking nearly as much as she should be for her weight 2)she's finally gotten to where she's eating solids very well, I don't like the idea of going backwards! She was going to talk it over with the nurse and doctor and get back to me. I guess we'll just have to wait and see what they decide. I'll keep you posted.

Wednesday, April 2, 2008

Day 9 wean (10 units)-

Reagan slept fairly well last night...considering. We put some arm restraints on her while she was sleeping (Pedi-Wraps-they basically prevent her from bending her elbows so she can't reach her eyes) and she didn't seem too bothered by them. She wakes up periodically through the night anyway, but last night it was just a little harder to get her to go back to sleep...maybe her eye was bothering her or maybe it was the restraints, who knows. We took her in today for her follow up and they took her patch off (more like ripped it off) and the doctor said her eye looks good (not infected or anything). It's hard to tell because she's not opening it much, I think because it is still a little irritated. The doctor said yesterday that it shouldn't really hurt that much but that it probably just feels strange...like when you get a scratch on your eye. It's a little blood shot along where the stitches are, but the doctor said that's perfectly normal. We have to put 2 different eye drops in it...one every 2 hrs and the other 4x a day! Fun, fun, she just loves that! In 2 weeks or so, the doctor will change the prescription in her glasses and she'll have to actually start wearing them. At that point we'll have to begin the patching. Just to clarify for everyone...the patching is done to strengthen the "weak" eye that was operated on. So we'll have to patch her good eye, forcing her to use the weak eye, for half her waking hours every day for anywhere from 5-8 years. Talk about a long term commitment! On a (somewhat) positive note...if the cataract in her other eye does eventually progress, it would basically be patching itself and strengthening the weak eye, and after having it surgically removed she probably wouldn't have to patch anymore!

On a different note, yesterday we dropped her dose of ACTH down again. Only 6 more days of shots and we're done with it! (Although the nurse did say that she probably needs to wait a few weeks after being totally off the ACTH before we start taking her out again, which sucks because I was hoping to start her therapy back up ASAP!) We did start her on a new seizure medication today...Felbatol. She's starting out on a really low dose 0.5ml 2x day for a week, then increase to 0.5ml 3x day for a week, and then to 1ml 3x day (which is still considered a fairly low dose). It seems like a very slow increase, but at least we'll be able to watch her closely for any negative side effects. She'll have to have her blood checked every 2 weeks while on this medication, which is a step down from the weekly checks she's been doing while on the ACTH.

Tuesday, April 1, 2008

Day 8 wean (10 units)- Cataract Surgery

Well, we're finally home. The surgery went well and they implanted an intraocular lens as planned. The doctor did mention that she has a cataract in her left eye as well...but it's so tiny right now they can only see it with a microscope. Single cataracts are usually a fluke, but cataracts in both eyes are what they call congenital. Congenital cataracts are present at birth, sometimes they are very noticeable to begin with and sometimes they are progressive and develop/worsen over time as in Reagan's case. They only removed the one in her right eye today because it was visually significant, but they will monitor the other eye and at some point it may require surgery. They came and got us after surgery and Reagan was crying and pretty upset. They were a little worried because she was breath holding (holding her breath when she cries, which she does often when she's upset), so they made us stay a little longer so they could watch her. She'll have to wear the patch until tomorrow when we go back in for a follow-up appt. We can already tell it's going to be a constant struggle to keep her from pulling it off. We just wanted to thank everyone for all of the support and ask that you would continue to keep her in your prayers for a quick healing/recovery!