Monday, March 31, 2008

Day 7 wean (20 units)- Surgery Tomorrow

Unfortunately, Reagan didn't sleep very well last night...I'm not sure if the clonazepam is doing anything or not. She's been quite feisty all day, she'll moan and groan all the while she's smiling!! She's such a turkey! Tomorrow is her cataract surgery. I'm pretty nervous about it. I hate the idea of my baby having surgery! She's been through so many tests and on so many medications...now surgery! Poor thing! I also just hate the idea of having her eye operated on and then the patching we're going to have to do afterwards!!! We're going to have to patch her eye for a minimum of 5 yrs!!! I'm just praying that this surgery is going to really make a difference in her eye sight. Maybe she's had this cataract to an extent all along and it's what has impaired her vision and caused her eye to cross? Her surgery is scheduled for 10:15am tomorrow and we have to be there 2 hrs early. She can't have anything to eat after 2am and no more clear liquids after 6am...so it should be an interesting trip to the hospital!! I just ask that you would all keep her in your prayers...that everything goes well and that her vision will benefit from this surgery!

Sunday, March 30, 2008

Day 6 wean (20 units)

Reagan was back to her usual sleep pattern last night...waking often. We can't complain too much, we did get one night with 5 hrs straight, so we are pretty grateful for that. Reagan has also been eating well lately, which is a welcome change. We haven't really had a problem getting her to eat solids (although she still eats less than other babies her age), but she has never wanted to drink her formula. We even started adding strawberry syrup to her bottles to try to entice her! She usually only drinks an ounce or two at a time, but the last few days she'll drink a 4 ounce bottle in 10 minutes or so without a fight. It's just one less thing to worry about. Although, I know we'll have a whole new set of challenges getting her to eat the foods on the Ketogenic Diet...but I'll worry about that when the time comes!! Don't forget, her cataract surgery is scheduled for Tuesday morning, please keep her in your prayers!

Saturday, March 29, 2008

Day 5 wean (20 units)

Reagan slept so well last night, I don't know if she was just exhausted from the busy day or what!?!? She fell asleep around 8:30pm and I kept thinking she's going to wake up any minute so I didn't go to bed until 10:30pm and then she finally woke up at 11:30pm. I got up and fed her and gave her the clonazepam and she went back to bed at 12:30 and slept til 5:30am!!! That's 5 hours!!! I can't remember the last time she slept that long!!! She's been in such a good mood today. Reagan has never really been that coordinated with her hands and she doesn't really play with toys ...but today Mike put her in her little rainforest jumperoo and she stayed in it for almost an hour (which is triple the amount of time she usually lasts) and she kept grabbing and spinning the little noisy spinner thing. I've never seen her do this before, so we were really excited about it! We also gave her a bath today in the tub and she loved it! Normally, we bathe her in a little plastic tub and she hates it and usually cries the whole time. It was night and day...she really loved being in the big tub where she could lay back and let her legs float up...she was so relaxed!



Friday, March 28, 2008

Day 4 wean (20 units)- EEG/Neuro Appts

Reagan slept fairly well last night, I think the clonazepam is helping but it seems like the effect wears off after a few hours. She slept for ~3hrs for the first stretch and then woke up every 1.5 hr or so after that. Today was a VERY long day for us all. Reagan started out in a great mood this morning, but has been fussy ever since her EEG...I'm sure she's exhausted. She really hates it when they apply and take off the electrodes and she cried the whole time. Luckily, the crying tired her out so she had no problem sleeping during the test. We finished up around 11:15am and went and waited for the appt with the epileptologist that wasn't scheduled until 2:15pm. They got us in around 1pm and we had a long chat with the epileptologist. He told us that her EEG was basically the same (still abnormal with hypsarrythmia) and that the ACTH didn't really do anything for her. He did for the first time use the words infantile spasms to describe her seizures, which is something that we've thought all along. He gave us a few options as to what to try next...several different drug options (Vigabatrin, Topomax, Lamictal, or Felbatol) and the Ketogenic Diet. He suggested that we could start her on the Felbatol while weaning her off the ACTH and then potentially start her on the Ketogenic Diet (which is probably what we're going to do). In his opinion the root of Reagan's problems are genetic and that although seizure control is desirable, it probably won't make a difference on her long term prognosis. This is kind of what we've been feeling from him all along...there's no real hurry to treat her (because there's nothing that can be done to correct a genetic abnormality). My point is...she has no diagnosis...we still don't know what is causing all of this...we may never know what it is...but we certainly aren't going to just write her off and stop fighting for her! And I feel like we need a doctor who feels the same. We managed to make it to the 3pm appt with her pediatric neurologist and he seems to like the idea of trying the Felbatol. It's a drug that is very effective for certain seizure types but is not used often because people are afraid of it because it has caused death in adults...but is fairly benign in children (keep in mind...most of these antiepileptic drugs have the potential for bad side effects ranging from blindness to death). He agrees that meanwhile we should get a second opinion from a reputable epileptologist, so that we can have peace of mind that we're doing everything possible to help Reagan. So that's where we stand right now. I'm sorry we don't have better news for everyone. Believe me, we REALLY wanted to have good news, but we're standing in faith that it will come.

Thursday, March 27, 2008

Day 3 wean (20 units)

Last night was a little rough, Reagan slept 2.5 hrs and then was up at least once an hour after that! I'm not really sure if the Clonazepam is doing anything or not. She's been in a pretty good mood most of today, I just hope that she behaves for her long day tomorrow. Her EEG is at 10am and then her appt with her epileptologist is at 2:15pm. The EEG usually takes an hour or so, leaving us with a long wait in the epilepsy clinic. It would be nice if they could get us in a little early because then at 3pm she has an appt with her other neurologist at Memorial Hermann Hospital (we scheduled this appt 6 weeks ago and I forgot about it until yesterday when they called with a reminder). This actually works out great because now we'll be able to talk to both doctors and get an idea of what each of them thinks should be our next step. We're still wanting to get in to see another epileptologist within the same practice, but we're not sure how that's going to work, hopefully he'll be willing to see Reagan so we can get a second opinion. Please keep it in your prayers that maybe we'll get some good news tomorrow and she'll have an improvement in her EEG!!

Wednesday, March 26, 2008

Day 2 wean (20 units)

Last night after giving Reagan the clonazepam she slept from 10:30pm-1:50am, which is great for her. Unfortunately, after that she was up about once an hour. So maybe it worked...we'll try it again tonight! We went to the pre-op appt for her cataract surgery this morning. We've decided to have an intraocular lens implanted which is essentially a man made lens to replace the one they remove with the cataract on it...the other option was to attempt to get Reagan to wear a contact lens in her eye and I'm not exactly sure how that would have worked. The doctor mentioned again that we shouldn't really expect this surgery to improve her vision...but we are still hopeful it will. We also went in to the pediatrician's office, because Reagan's hip was popping and she needed to check it for dysplasia. Her pediatrician just thinks she's getting tight from stopping her physical and occupational therapies while on ACTH. She very much agrees that we should find another neuro/epileptologist, and she recommended an epileptologist that has relocated to Memphis to head up the Le Bonheur Level IV Comprehensive Epilepsy Program. It has also been suggested by others that we take her to Boston Children's Hospital or Philadelphia (CHOP). We want to do what's best for Reagan and we need a doctor that's willing to put forth some effort to diagnose and treat her and we'll go wherever needed to get the job done! It would be nice to have someone that could do the job locally, but at some point it may be in her best interest to go elsewhere. I just ask that you would keep this in your prayers that God would lead us to the right doctor, one that has seen a similar case and has some sort of foundation on how to best treat Reagan and how to stop her seizures.

Tuesday, March 25, 2008

Day 1 (20 units)- Begin weaning off ACTH

Last night was a rough night, Reagan woke up a lot, and was wide awake from 3:30-5:30am and then up for good at 7:30am. We didn't give her the Clonazepam last night, but we might try it tonight. Well...the nurse called back today and said that we could begin the wean. Obviously the ACTH is not working, if anything it has made things worse, so we may as well get her off of it sooner rather than later. I just hope that these new spasms go away once she's off the ACTH. Tomorrow we have several appointments first thing in the morning. Reagan has a pre-op appt for her cataract surgery, then she's going to have her blood checked at the hospital, and then we're taking her by the pediatrician's office for a quick check up. Reagan's immune system is still suppressed, so hopefully we can get in and out of the pediatrician's office without her catching anything.

Monday, March 24, 2008

Spasms

Here are videos of some of the strong spasms Reagan has been having lately...these two happened within a couple minutes of each other. Keep in mind, her spasms used to be so subtle that most people would not even notice them...these you can't miss!




Backward Spasm





Forward "head butt" Spasm

Day 22 (30 units)

I'm having a major meltdown today. Reagan's constant seizures are stressing me out (I have some video clips of her strong spasms that I will try to post later). I voiced my concern and left a message for our epileptologist. His nurse called me back and said that the doctor doesn't want to change anything until he sees her and talks to us in person on Friday (after her EEG). She told me, "You know, you're not the only mother with a kid having constant seizures! Maybe you should talk online with other parents!" I didn't tell her that everyone I talk to online is telling me to switch doctors!! She called in some clonazepam to try giving her at night to help decrease her spasms and her sleep, but I don't like the idea of giving her any more medication. I hate that about seizure medications... doctors just tend to add more and more medications until the poor kid is on 4 or 5 at a time and usually still having seizures! It's so frustrating! She did mention that the next treatment they want to try is the ketogenic diet, which would be GREAT if it worked, no more meds would be wonderful! My concern is that 1) Reagan is a VERY picky eater and only likes sweet stuff, she LOVES her juice...even her formula is sweetened with syrup 2) it's another line of therapy that if it doesn't work initially, we could end up wasting another few months...time is of the essence, isn't it!?!?! It's just so frustrating. And meanwhile I'm still having my doubts about this doctor and maybe we should switch to someone willing to give her more individualized care. So many decisions...and I feel like we haven't made any good ones up until this point.

Sunday, March 23, 2008

Day 21 (30 units)

Happy Easter everyone!! This was Reagan's second Easter, since last year she was about 2.5 weeks old on Easter Sunday. It was back to business as usual last night, Mike and I were both up and down a lot and she decided to wake up for good at 7:30am. So much for sleeping in. We were unable to go to church or participate in any big family get togethers because of Reagan's suppressed immune system. Instead we watched church on TV and then Grandma came over and we put Reagan in her Easter dress and took some pictures! Look at her little pink loafers, too cute!!












Saturday, March 22, 2008

Day 20 (30 units)

I had another good night's sleep last night (and even Reagan slept pretty well). But tonight we're on our own because my dad and stepmother went back to Austin today. We enjoyed their visit and they were a big help with Reagan (and Bear). Reagan has been in a good mood all day today, babbling and squealing and smiling, she's such a sweetie! Poor thing, she's having so many seizures now. I hate it! With these new twitches she's doing, it seems like she's having some sort of seizure nearly all the time. We were hoping the ACTH would stop them and instead they've increased. (Has anyone ever heard of this happening?) I just hope they decrease when she finally gets off the ACTH. And most of all, I hope we can find something that will make them stop for good!!



Friday, March 21, 2008

Day 19 (30 units)

Today is Reagan's 1st Birthday!!! Last night was another restful night for me, with my stepmother and my dad helping out again. I still instinctively get up when I hear her crying, but not having to stay up (all night) with her has been quite a relief. She was in a great mood yesterday, but today she's been pretty fussy all day (one good day, then one bad, that's the pattern). Her party was dalmatian themed (she loves toy dogs); Grandma even made her a spotted puppy dog cake! She was a little irritated when the party first began, but she took a small nap and then felt much better. And even though her little cousins couldn't attend, they sang happy birthday to her via video! She got all kinds of good stuff...money, toys, and tons of clothes...what more could a little girl want!?!? All in all, it was a pretty good birthday, but we're looking forward to an even better one next year without seizures!!
A few quick pics!



Reagan's outfit coordinates with her party!!



Reagan with Grandma!


Her spotted dog cake!!


Reagan with Daddy!


Reagan with her Paw Paw!



Digging into her cake!


Reagan with Aunt Amber (after she changed out of her cake covered party clothes)!

Thursday, March 20, 2008

Day 18 (30 units)

Last night my dad and step mother came in from Austin to stay with us so they'd be here for Reagan's birthday. It was nice because they kind of tag teamed with Reagan during the night so I could get some much needed rest. I did still get up a few times (out of habit more than anything), but I got way more sleep than I usually do! She has been in a great mood all day...I hope she's this good tomorrow for her birthday! She's still having those same seizures we noticed yesterday. I finally spoke with the nurse, who spoke to the doctor, and he wants Reagan to stay on the ACTH for the full course. We'll see. Another day like yesterday and I'll take her off of it myself!! On a good note, she has an EEG scheduled for next Friday. Originally, the nurse was saying that we would have to postpone it if she was still on the ACTH, but after talking the with doctor, she said that we're going to go ahead with it next week (and she's got an appt with him a few hours later, so we'll find out the results very quickly)! Last night was a rough night for the shot, her new (out of practice) nurse gave her the shot and then blood went everywhere! I'm still not sure what she did but that was the breaking point, as soon as she left I called our original nurse (who was on vacation) and she agreed to come back to us on Monday to finish up the rest of Reagan's shots! The whole time she was giving the shots, Reagan never had one single bruise! Now her little legs are covered with little purple bruises! I'm so glad that she is willing to come back, it makes things much less stressful for us!


Wednesday, March 19, 2008

Day 17 (30 units)

Reagan actually slept a little better last night, waking up periodically, but going back to sleep fairly quickly each time. This morning my mom helped me take her in to get her blood checked and she started crying inconsolably from the second we arrived at the hospital until about an hour after getting her home. Mentally, I'm about to go off the deep end. The worst part is she's been doing this new spasm quite a bit this morning where she kind of shrugs her shoulder or arm. It's something I've never seen her do before and she's having these spasms in addition to the other big ones she's been having lately. I'm just really doubting our decision to keep her on this medication. I can't stand the idea that it might be making things worse! That's the last thing we need!! It's just so stressful. I have a call in to the epileptologist (although he never called me back today), I want to know his opinion on what we should do...instead of him just going along with what we want to do! He's the doctor...I need him to make a decision as to what's best for Reagan. I'm beginning to wonder if it's time to find a new doctor. Everyone says how great he is and how he's the best, but it just seems he doesn't have the time or will to get to the bottom of what's going on with Reagan. She needs someone to take everything into account and treat her as a whole patient...not just as a seizure patient. If you could just please keep all of these things in your prayers...we really need guidance in these areas so that we can do what's best for Reagan.

Tuesday, March 18, 2008

Day 16 (30 units)

Reagan was in quite the BAD mood last night before going to bed! She was sooooooooo fussy! Thank God she got over it and was happy when she woke up in the middle of the night. It's hard enough having to get up constantly throughout the night, but when you're getting up with a fussy baby...it's much harder to keep your sanity and remain patient! Reagan has been in a good mood most of the day today, except when she's getting tired...then she's a screaming maniac! She's been squealing and babbling a lot lately. I really need to get a video of it. She'll do this high pitched squeal, then I'll do it, and then she'll do it again! It's too cute!

Monday, March 17, 2008

Day 15 (30 units)

Last night was a rough night. Reagan woke up every 30 minutes or so all night long!! You might be wondering why the title of this post is Day 15...30 units. Well, after talking it over with the doctor, we've decided to give this dose the full 4 weeks to see if Reagan will respond to it. We don't want to always wonder "what if", maybe if we would have stuck to the protocol it might have worked. The "low dose" protocol is 2 weeks at 20 units, then 4 weeks at 30 units, then 2 weeks weaning off...so that's what we're going to do (although I am a little torn over this decision since her seizures have increased in intensity while on the ACTH). That does mean that she'll still be on the medication when she has her cataract surgery, but her epileptologist said that's fine (she'll have to get a dose of "stress steroids" during the surgery, but she'd have to get that regardless since she's been on the ACTH for so long anyway). So I would just like to ask for everyone to keep praying for her...we'd love to not only to see an improvement in her EEG (or no more hypsarrythmia) but also a decrease or end to her spasms!!! When we started this journey with ACTH we really felt like everything was pointing us in this one direction; I still believe that something positive is going to come out of this!


Happy St. Patrick's Day!!!!

Sunday, March 16, 2008

Day 14 (30 units)

Reagan was up a lot last night, every hour or so, and then wide awake from 4-5am. While she was up I was holding her in front of me looking at her and she had a huge what we've been calling "head butt seizure" where she crunched forward and slammed her forehead into my upper lip/teeth! I really thought she had busted my lip and given herself a concussion...but we were both fine. Needless to say, this weekend we haven't noticed any decrease in the frequency or intensity of her seizures. So it looks like we'll be starting the wean tomorrow. (Which is good because we're not really sure how competent Reagan's new nurse is. When she gave Reagan her shot yesterday, she pushed it in soooooooooo slowly that Reagan finally jerked her leg away and the needle flopped around in her leg because the nurse hadn't pulled it out yet!!! Hopefully, she'll do better tonight or we might be finishing off the injections ourselves!!) It's upsetting because we were all really hoping that this was going to be her miracle drug, but I know there are still many other treatments out there that could still do the trick. I just pray that her doctor chooses wisely and that we can find something sooner rather than later that works for her.

Saturday, March 15, 2008

Day 13 (30 units)

Reagan has been in a horrible mood all day! I guess she woke up on the wrong side of the swing!! Her MawMaw and PawPaw (Mike's parents) came to see her today and she cried almost non-stop, which is unfortunate, because she was in a bad mood the last time they saw her!! They only see her happy in her pictures!! I promise, she can be sweet...when she wants to be!! I did go by the store and buy her a cute little dress to wear for her birthday on Friday. I feel bad, with all of craziness going on lately, we haven't had time to plan any sort of birthday party for her! And since her immune system is still suppressed, we aren't even going to be able to have any kids over. We're thinking we'll just have a few family members over for a small party Friday night. It's hard because her birthday really reminds us of how far behind she is developmentally, but at the same time we know (and are reminded every time we visit Texas Children's) things could be much worse and we do have a lot to be thankful for. Please keep her in your prayers...the thing she needs most for her birthday is for these seizures to stop!

Friday, March 14, 2008

Day 12 (30 units)

Last night was actually not a bad night. Reagan woke up every hour and a half or so, but she didn't wake up to the point that I actually had to pick her up until around 5am. I stayed up with her until around 6:30am when I finally just put her little butt in her swing (awake) and I laid back down. I tried patching her eye today and she was not at all happy about that, she made it about 15 minutes before she started fussing and constantly rubbing and grabbing at the patch trying to get it off. I distracted her for another ~15 min, so she wore it for 30min total. I can imagine how frustrating it must be, not seeing very well to begin with and then having your one "good" eye patched!! Poor thing! We're going to count her seizures today and over the weekend to see if there's any decrease at all (before starting the wean on Monday). I've done it once so far today and they seem about the same, in one hour she had 13 separate events (6 of which were clusters of 2-3).


Thursday, March 13, 2008

Oops!!

OK, I'm embarrased to admit it, but I really goofed up. Reagan gets her daily injections in alternating thighs, so if Tuesday she got it in her right leg then Wednesday she would get it in her left leg and then Thursday back in her right leg. Her nurse and I both keep journals to make sure we know which leg to do on which day, sounds foolproof doesn't it? So I put the numbing cream on her leg about an hour before the nurse comes each day and that way it will be at maximum numbness when she gets her injection. So I checked the schedule and it was time for the right leg so I put the cream on, but when the nurse was about to inject her, we looked at her leg and both thought...this looks like the leg we injected yesterday! So we looked back at the schedule and it was the correct leg...but then I thought about it and Wednesday when I put the cream on her leg she was in her swing and I must have put the cream on the leg on MY left...which was HER right!! So poor baby...she got injections in her right leg 3 days in a row!! I felt SO bad!! No wonder she was squirming when the nurse wiped her leg off with alcohol beforehand...that leg must have been sore!!! And then to top it all off at night she had this strand of hair that was driving me crazy, it was much longer than the other hairs in the same area, so I got the scissors and wacked it off. Well, she started crying! I figured the cold scissors must have just scared her. Nope...I actually cut her neck!!! Nothing huge, but it must have hurt!! What a day!! Where's my award for worst mom of the year?!?!?

Day 11 (30 units)

Last night was a little rough (like the last couple of days). Reagan decided she was going to be wide awake from 1:30-3am and 5:15-6:30am. Luckily, she slept in a little this morning which gave us both some much needed rest. She's been in a cheerful mood all day though, so that's good. I put a call in yesterday and again this morning to the epilepsy clinic, and finally heard back from the nurse this afternoon. It can be so frustrating dealing with these doctor's offices. Her epileptologist has cleared her for surgery. He also said that we're going to give the ACTH a few more days to work and if we don't see a decrease in her spasms by Monday, we're going to begin the wean. She'll have an EEG after the wean, probably the week after the surgery, but they're going to see if they can possibly squeeze her in for the EEG a few days before the surgery.

I just want to thank everyone for checking in on Reagan and for your positive thoughts and prayers. Although we don't respond to all of the emails and comments on the blog, please know that we read every last one and we greatly appreciate your continued support. This has been a very trying experience for us and it's a tough lesson to learn that there's only so much we can do for Reagan and that it really is all in God's hands. I believe that this has not only made us more appreciative of the little things for which most take for granted, but has also strengthened our love for her and made us better parents. God is good and we are so blessed for the love and support we have received from our friends and family (and even complete strangers). We are firm believers in the power of prayer and we just ask that you will continue to pray for Reagan and for her complete healing.

Wednesday, March 12, 2008

Day 10 (30 units)

We met with the cataract specialist this morning and she looked at Reagan's eye. Yes, there's definitely a cataract. It's about 2-3mm in the center of her pupil. Since Reagan had an eye exam about 2 months ago, the good news is that it is relatively new so it probably hasn't done much damage to her vision as of yet. The sooner you remove them, the better. Right now, she's scheduled for surgery the morning of April 1st (with the possibility that we could get it moved up a week if someone cancels). It's an outpatient surgery, lasting only about 1.5hrs with at least an hour of recovery. This doctor has one day a week that all she does is perform cataract surgery on children, most of which are younger than Reagan. She doesn't really expect this surgery to help or hurt Reagan's vision (although I hope that maybe it will help) and afterwards she'll have to wear her glasses and we'll have to patch her good eye to help strengthen the one that's operated on (not all of the time, just periodically). Now we just have to run all of this by her epileptologist to find out what he wants to do about the ACTH treatment. The ophthalmologist said it's fine for her to stay on it, but we want to run it by him just to check. She was in a really fussy mood after her appt this morning, but I think she was just super tired. She took a good nap and has been pretty good all afternoon!


Reagan's thinking of giving Bear a kiss!! (Bear seems a little grossed out by it!)

Tuesday, March 11, 2008

Day 9 (30 units)- Cataract?

Well, Reagan's eye appointment didn't go as well as we had hoped. She has a cataract over her right pupil, which could be obstructing her vision, but is unrelated to the CVI (cortical visual impairment) which is the main cause of her vision problems. She has an appt tomorrow morning with a doctor within the same practice that specializes in the removal of cataracts in children and she'll look it over and probably talk to us about surgery to remove it. I vaguely remember the doctor mentioning an area of "cloudiness" in one of Reagan's eyes at her last appt (although she has no written record of it), and it's very likely that it just progressed into what she said now is a very noticeable cataract. We should have more information tomorrow after talking to the specialist. Please keep this in your prayers. This adds a new area of stress to our lives and we just want to make sure that we do what's best for Reagan. Poor baby, like she didn't already have enough problems.


Monday, March 10, 2008

Day 8 (30 units)

I'm finding myself a little depressed today. Maybe it's the cold, wet weather outside, I don't know. I just wish we would see some results. The thought of Reagan going through this ordeal of daily injections for 2 months without benefit just sickens me. I know I need to stay positive, it's just hard sometimes (especially for me always being such a pessimist). I keep telling myself that maybe it is already working, maybe the hypsarrythmia is gone, we won't know until she has another EEG at the end of the treatment. She has an appointment with her neuro- ophthalmologist tomorrow. She hasn't seen her for 4+ months, so I'm curious as to what she'll have to say. Mike is taking the day off and we're going to take her to her eye appt at 8:30am and then take her over to get her blood drawn. I just hope that we can avoid the sick children while we are there, because Reagan is just now finally off her antibiotics!

Sunday, March 9, 2008

Day 7 (30 units)

Not much exciting news today. Sleep last night was about the same as always. Today Reagan has been pretty good, except when she gets tired, then she gets very fussy. I'm just hoping we'll start to see some results soon. She's been on the increased dose now for a full week (although this dose is still very low compared to most others on ACTH therapy). We did find out that our home care nurse is going to be leaving for spring break next weekend! She said a nurse that lives in our area is going to pick up the rest of Reagan's injections. That's right, she's not coming back at all. Which I'm not at all happy about...she not only had experience with children but worked in the epilepsy clinic at Texas Children's alongside our epileptologist; we really couldn't have gotten anyone better. I don't know anything about the new nurse except she's a nurse and she lives in our area.

Saturday, March 8, 2008

Day 6 (30 units)

Sorry about the late post today, our internet (and cable) has been out most of the day!! Reagan was up a lot last night, especially from 2-4am when she was wide awake!! She's just not much for sleeping!! We're still not really seeing anything that would lead us to believe that the ACTH is
really taking effect. She's not any more fussy than usual and her eating is about the same (and her sleeping couldn't get any worse, so that's not a good indicator). She's gained .5lb since starting, but she has been on it for almost a full 3 weeks. And as far as the seizures go, I don't want to mislead anyone, there are times when it seems like she might be having less, and then next thing you know she'll have a bunch of them all at once. The intensity of the spasms has not decreased for sure. She'll have some where she'll nearly fly off your shoulder and then others where she'll slam her head forward so hard it's miracle she didn't break anything. It's just hard to say if it's doing anything just yet. From what I can tell, with the higher dose protocols you often see results fairly quickly, but the low dose protocols usually stretch out over a longer period of time, so maybe you don't see results until they've been on it for quite a while. I don't know. Every child is different and from what I can tell, so is every protocol (high or low). We're just going to keep praying and expecting great things and hopefully we'll see some results soon!!


Friday, March 7, 2008

Day 5 (30 units)

Well, I got a good night's sleep last night. Mike was off today, so he took night duty last night (which was sooooooooooo nice). Reagan slept about the same as she usually does, so needless to say, Mike didn't get much rest. She was a little feisty this morning, but she's been in a great mood most of today. It seems like she might be having less seizures, but it hasn't decreased by a lot just yet. But I also think because she is on the "low dose" protocol that it may take longer to actually see a big difference.

Thursday, March 6, 2008

Day 4 (30 units)

Last night it was back to normal, up every hour! She did take a good 2hr nap this morning and she's been happy pretty much all day. She had a good therapy session with her vision therapist...it really does seem like her vision has improved significantly lately. The medicine was finally delivered tonight at 6:30pm (thanks for the prayers). And her nurse gave her the full 30 unit dose at 6:50pm. The good thing is they delivered 3 full vials so we should have enough to finish off her treatment and won't have to go through all of this again!! Now...we're just waiting for these pesky seizures to go away!!






It does look like her cheeks and thighs might be getting a little puffier?!?





Cindy Lou Who...who's no more than two.

Wednesday, March 5, 2008

Day 3 (22 units?)

We tried something different last night. Usually after getting her injection, Reagan will doze off for an hour or so around 7pm. But last night she wasn't really tired until later so we did everything we could to keep her up as long as possible. Poor thing, she was SO exhausted in the end, she was like a sack of potatoes!! We put her in bed with us a little after 10pm and she slept until midnight. Not exactly what I was hoping for, but at least she slept for about 2 hrs straight! Then she would wake up fussing every now and then until 2am, and she was wide awake from 2-3:30am. I put her back in the swing and I think she slept until 5:45ish...it's so hard to remember when you're this sleep deprived!! All in all it was a better night, but there's still room for improvement!

This afternoon she had an evaluation for physical therapy through ECI while she's home bound (she was receiving private physical therapy, but we had to put that on hold while she's immune compromised). She fell asleep right before they arrived and slept through most of the evaluation (which is quite unusual for Reagan because she is such a light sleeper).

The remainder of this afternoon I have spent on the phone trying to get in touch with the doctor's office. Reagan's shipment of ACTH never arrived today, it turns out the pharmacy is totally out of the medication and just didn't plan on telling us!?!?! Anyway, it's been total chaos because the entire pediatric neurology clinic has been in a "staff meeting" all afternoon (they're at a retreat) and not returning any calls. I finally got in touch with Reagan's home care nurse and she thought for sure we could just come up to the hospital to get an injection, but apparently since the price of the medication went up they don't keep ANY on hand at the hospital!! So we're out of luck. She's got ~22units left in the vial and that's all she'll get tonight (I thought it was less initially, but I measured incorrectly). It's really irritating, especially since I told them early last week that we needed to go ahead and order it and they kept putting it off and then this happens!! I just ask that everyone would please pray that we at least receive the medication in time for her injection tomorrow!!!!

Tuesday, March 4, 2008

Day 2 (30 units)

It was another rough night last night. I don't know what we're going to do? She will NOT stay asleep! We've thought about letting her "cry it out", but one issue is that crying decreases their threshold for seizures, so it could potentially cause her to have more of them. And two...she's waking up a lot of the time because of a seizure. I hate to punish her for that; it's not her fault! I don't know! I do know that both Mike and I are going to go NUTS if we don't get some sleep soon!! But she was so good today. We took her in to the hospital to get her blood checked and she fell asleep in the car on the way there (granted it was 11am and she'd been up since 6am) and then she only cried for a second when they stuck her finger and she fell right back to sleep! She's such a good girl! In all she took almost a 2hr nap. I'm so jealous!!




Monday, March 3, 2008

Day 1- Increased dose (30 units)

Well, Reagan's nurse was confused and instead of starting her increased dose tomorrow like we were supposed to do, she gave it to her tonight! So everyone please keep her in your prayers and hopefully we'll see a reduction in her seizures soon!!!

Day 14

Another rough one last night. Reagan was up a lot, her cough has gotten much worse and her nose is so congested she sounds like she can barely breathe. I know how she feels because I now have whatever it is that she has and my throat was killing me last night. Luckily, Mike is still well, we need someone to stay healthy. I did speak with Reagan's epileptologist today and he said that he must have misspoke originally, because he never uses more than 30 units of ACTH. There are 2 protocols for treating infantile spasms with ACTH- the high dose protocol (where they use up to 80 units but patients have the tendency to exhibit a lot of the negative side effects of the drug) and the low dose protocol established at Baylor/Texas Children's (where they use 20 units and then increase to 30 units maximum dose which has shown to be as effective as the high dose but with fewer side effects). I don't know, I guess we just have to trust our doctor, because we don't really have much of a say so in this. I just pray that this dose will work for her!! Reagan has been in a better mood today, despite not feeling well. She took a nice nap this morning from 7-9:30am...too bad she doesn't do that a night!!

Sunday, March 2, 2008

Day 13

Everything is about the same here. No sleep last night, Reagan has been pretty fussy all day today with a chronic runny nose, and we still haven't seen a decrease in her seizures. We're almost looking forward to increasing her medication, at least then we might see some response!! Right now she's not even exhibiting the most common side effects of the medication like increased appetite and irritability (that one would be hard to judge with Reagan). I'm hoping to hear back from her doctor tomorrow about he wants to do about the increase. It's so crazy, this drug has been used for 50+ years to treat infantile spasms, yet every single doctor has a different idea as to the dose and amount of time to administer it! You would think there would be some general consensus as to what works best!?!?! It's very frustrating! Please keep this in your prayers that he makes the right decision.

Saturday, March 1, 2008

Day 12

Reagan had her normal bad night's sleep last night, but Daddy got up with her from 5-6:30am instead of the usual Mommy. (To be fair, Daddy did sleep in late though.) Some day we're all going to get a good night's rest, hopefully sooner rather than later! Reagan has been in a pretty good mood all day today, despite waking up with a crusty, stuffy little nose! (She did start up on antibiotic last night just to be safe.) I spoke to the nurse practitioner at the epilepsy clinic late yesterday afternoon and she said that Reagan's doctor wants to increase her to 30units of ACTH on Tuesday. I'm a little confused by that because he originally said that we would increase to 40units. Don't get me wrong, I'm all for the lowest dose possible, but I also want to make sure that we're giving her enough to give it a fair shot at working. Especially since we're not seeing ANY decrease in her seizures at 20units (we're not even seeing the most common side effect of increased appetite)! I don't want her to go through this ordeal for a full 2 months and have it not work because we never increased the dosage enough. Her doctor tends to be conservative in his course of treatment, but this ACTH treatment is a one shot deal, so we just want to make sure that he makes the right decisions as to what's going to work best for Reagan.