Monday, June 30, 2008

New plan

OK...so I was a little annoyed with our new neurologist. I waited all day for him to call and was pretty irritated that he wasn't going to get back with us today and then he finally called just before 8pm tonight! So the plan is to start vigabatrin tomorrow. This is one of the major drugs used to treat infantile spasms (some even use it before ACTH) and it's one Reagan has not tried yet. It works by a mechanism different than anything she's tried up until this point and since everything she has tried hasn't worked...maybe this will. It's not approved in the US (it can potentially cause permanent peripheral vision loss although I think it's very uncommon to see that with short term use for IS). You have to order it from Canada or Mexico...luckily we've been given some by our generous friends in CA to have on hand just in case the Ketogenic diet didn't work. So that's the plan. Start tomorrow... 250mg in the morning...250mg at night. We'll do this for 4 days or so and then potentially increase it to 500mg twice a day after that. According to her doctor, we should probably see some response to this within weeks (instead of months) if it's going to work for her. Reagan's still having a lot of seizures (even with the increased dose of clonazepam), so I'm just glad to be going on to something new. And she's just been so floppy...it has to be the clonazepam!! We're going to take her back down to 2x a day and then probably decrease it further as we increase the vigabatrin. I spoke to the dietician this morning and we're decreasing her ratio down to 2:1 for this next week. Reagan is still stuffy...I think she really might be getting sick. I wonder if I should take her in to see her pediatrician. But I'm afraid that she may just pick up more than we get rid of with a trip to the doctor's office. Please keep her in your prayers because we all know what a little sickness can do to seizures.

Sunday, June 29, 2008

Better

Reagan has been in a much better mood today than yesterday (thank goodness because she was a challenge yesterday). She still sounds "stuffy" but I guess she must be feeling a little better. She wore her AFOs for a little longer today...3hrs...we'll increase it to 4 tomorrow. They don't seem to bother her too much. Her ankles and heels are a little red after taking them off, but they don't stay that way long enough to be worried. She's still having A LOT of seizures, but luckily no more tonics. The clonazepam doesn't seem to be doing anything anymore...even with the recent increase. I think it's time to move on to something else. I'm fairly certain that it's responsible for her being so "floppy" lately...I'll be glad to see her off this medication and more alert again. Hopefully we'll hear from her new neurologist sometime tomorrow to discuss what to do now (that the diet is obviously not working for her). I can't stand watching her have this many seizures so I welcome the chance at trying something new. I'm also expecting the dietitian to call to let us know what we need to do to decrease the ratio of the diet down to 2:1. Please keep Reagan in your prayers and pray for guidance for her doctor in choosing which direction to go next in her treatment.

Saturday, June 28, 2008

AFOs are here

One thing I didn't mention yesterday...I noticed while we were sitting in the ER that my throat was hurting. I have horrible allergies year round so it's always hard for me to distinguish between allergies and actually getting sick. But a sore throat is usually not a good thing and I've been quite congested today. Now that I think about it, Reagan has been a little stuffy the last few days too. So I'm wondering...is Reagan getting sick? Because that's a big trigger for seizures and could possibly explain why we saw 2 tonics yesterday. I don't know. It's all such a guessing game. What's causing the seizures? How do we stop them? No one knows. It's basically just trial and error...each kid ends up being guinea pig. It's insane! And so frustrating. Reagan's been in quite the mood today. Fussing all day as well as bouts of screaming (like she's in pain). We gave her the clonazepam 3x today and thank God no more tonics.

We had an appt at 8am this morning to get Reagan fitted for her AFOs. They put them on and made a few adjustments and we were off. We'll gradually increase the amount of time that she wears them. She wore them for an hour this morning and then an hour tonight. Tomorrow we'll increase it to two hours and so on. The guy that did the fitting basically said that we'll continue increasing the time until she's wearing them all waking hours...but when I asked her PT about it she said that Reagan probably only needed to wear them 6-8hrs a day to get the full benefit. I guess I'll need to follow up on that. She also got measured for some elbow splints because she tends to keep her elbows bent and her arms tensed up and also some hand splints that fit over her hand like a little glove and keep her fingers and thumb out so she won't keep them in a fist, like she tends to do. These aren't things that she'll wear all the time...just off and on to help her break these bad habits! Mike was joking that she's going to be bionic once we get through with her...the 6 million dollar baby!


Friday, June 27, 2008

Tonics

Today has been an absolute nightmare to be completely honest. Reagan woke up this morning fussy, but nothing unusual. She took a little nap and then woke up and really wasn't having too many seizures but then about 45min after waking up (10am) she had a tonic seizure. This was her worst one yet. It kind of caught me off guard because when she went into it she wasn't trembling the whole time like she's done in the past, she trembled for a few seconds but then was just completely stiff. And she had a horrible look on her face. Her eyes and mouth were open as wide as they could possibly open and her whole face was contorted and strained. It was terrible! And it lasted for much longer than usual about 5-6min total. When she came out of it she immediately went to sleep. I wasn't really sure what to do but I still had to take her in to get her blood checked, so I loaded her up into the car and drove to the hospital. My mother met me up there (she works a few buildings down) and we went to the pathology lab to have her blood drawn. She woke up on our way there and had some small seizures (typical of her waking up) but as we got to the lab around 11:30am she went into another big tonic seizure. That's 2 within 1.5hrs! We were going to take her to the epilepsy clinic but the nurses in the elevator insisted that we take her to the ER. The insane thing is that just this morning I was thinking about the fact that at least we've never had to take Reagan to the ER for her seizures. So we got to the ER and she was still in the middle of it so they took us in immediately to a room. She stopped shortly after and the next several hours we were there they essentially did nothing (but that's the thing with seizures...there's really nothing they can do). We never even saw a neurologist, they just spoke to them over the phone. They did check Reagan's levels of beta-hydroxybutyrate (for the diet) and said that it's down to 5...which is typically a very good level for seizure control. Obviously it's not working for her. The plan is to up her dosage of Clonazepam to 3x a day and talk to her doctor on Monday (he was gone at a conference) about what course of action to take next. We're going to keep her ratio at 2.5:1 until Monday and then the dietitian is going to tell us what to do to get her to a 2:1 ratio and begin weaning her off the diet. That's the plan. There's still a chance that as we wean her off we'll hit a ratio that will work for her, you just never know. I just pray that we don't see anymore of these tonic seizures this weekend (or ever). Please keep her in your prayers...


Thursday, June 26, 2008

Insurance

I have been on and off the phone with our insurance all day today trying to figure out how to get Reagan's stander covered. I thought it might just be an issue of having the wrong code, which it still may be, but even if we get them to approve it, I think they will only cover one item. Either the stander or the feeding chair...but not both. We may have to go through some sort of charitable organization to get one the other one (these things aren't cheap...usually a couple thousand dollars). If anyone has any suggestions, please let me know. Reagan has been in a MUCH better mood today. She's been happy and easy going pretty much all day long. She took some good long naps and had yet another good PT session this afternoon. Her seizures are still going strong though. I'm going to take her in tomorrow morning (to have her levels checked) but I'm anticipating that we'll lower the ratio of her diet again (to 2:1). We're running out of time...this may be our last chance to get it to work. Please keep her in your prayers!

Wednesday, June 25, 2008

Patience...

Reagan has been such a turkey today! She slept so great last night...we couldn't have asked for better. She went to sleep around 11pm, I woke up at 3 and fed her a bottle (while she slept) and she woke up for good at 7am. So basically she slept through the night...a first for her! But she woke up this morning screaming at the top of her lungs! She cried inconsolably for an hour, granted she was having a lot of seizures, but they usually don't make her that upset. Then the rest of the day, if she wasn't whining or fussing she was crying! It has been a trying day for me. Surprisingly, she was OK for about 3/4 of her OT session today, but as soon as the therapist switched to doing oral motor therapy that was it! Reagan went ballistic! She's not a fan of having people put their hands in her mouth (the dentist should be a fun experience). She was tired and hadn't taken a nap, so luckily she was out like a light as soon as I put her in the car seat...unfortunately that only lasted 10min or so until I made it home and took her in the house and immediately the crying started back up. I really think it's teething again. Her upper right tooth is still working its way out. Obviously she's not so good with pain. I wonder where she gets that? I'm hoping she'll be a little easier to deal with tomorrow.

Tuesday, June 24, 2008

Stander Drama

We're having a bit of unexpected drama. We're going through our insurance to get Reagan's stander (and feeding seat) since the Texas ECI programs don't have the funding for those sorts of things. Our PT was not expecting any complications getting it covered since most insurances have no problem covering standers because the benefits are well documented (while most insurances refuse to cover the feeding seats but we thought we would look into it just in case). There's a picture of it below...it's the Jenx Monkey stander. So the therapist contacted the company that sells the equipment and they checked into what our insurance was willing to cover and they found out the opposite...they didn't mind covering a feeding chair but were refusing to cover the stander. When I got home from therapy (another wonderful PT session) I tried calling our insurance and spoke to an extremely RUDE woman that wouldn't listen to a word I was saying. We kept going back and forth and finally I just hung up on her because she was IMPOSSIBLE. It's probably best if me and my temper stay out of these things. I'm hoping her therapist can figure it out. I just can't imagine our insurance (which has always been absolutely wonderful) not covering something that most insurances cover. We'll see. Reagan's seizures have been rough today. She's been having a lot of seizures after waking lately but I had no idea of real numbers, so I thought I would count them. Big mistake! She had 200 spasms in 1hr. They finally tapered off after that, thank God. But she did have another bout of them in the afternoon (I didn't even bother counting those). I spoke with the nurse practitioner and she wants us to wait until Friday and check her beta-hydroxybutyrate levels before making any more changes to the diet (lowering it to a 2:1 ratio). I don't know...it's going to be a long week if this continues. Please keep her in your prayers!



Monday, June 23, 2008

Definitely a Monday

Reagan decided to wake up at 5am this morning (very fussy and having lots of seizures) and didn't go back down until 7am. We've all been a little wiped today. She had occupational therapy this afternoon and it went relatively well (considering). She was asleep for the first part, so the stretching was painless for everyone involved, but then she woke up and was a little floppy for the remainder of the session. The seizures have been exceptionally bad today, even the clonazepam didn't seem to make a dent in them. I'm not sure if it's just her adjusting to the changes we made to the diet or what, but it's quite aggravating. Could be teething...she has been super whiny today...who knows. All I know is that we NEED to see some improvement on this diet. She CAN'T continue having this many seizures. She just can't. Please keep this in your prayers!

Sunday, June 22, 2008

Sleep for everyone!

Reagan had another great night's sleep last night (thank you God)! She woke up only once at 1am and I gave her some juice to get her back to sleep. Then I woke up at 4am, fed her a bottle as she slept, and with a full tummy she didn't wake up again until 8am. I'm hoping that maybe this is all related to her state of ketosis improving (and not just being full) and that the recent changes we've made to her diet are a step in the right direction. Hopefully we'll begin seeing less seizures as her levels of beta-hydroxybutyrate go down to a more appropriate level. She's still having a lot right now and we've been having to give her clonazepam twice a day to help lessen them a little. Even with all the seizures lately she's been a relatively happy baby. Maybe the extra sleep is doing everyone some good. Here's a picture to leave you laughing. Bear was lying on his back the other day and I took a picture of him because he looked so goofy (he looks like a vampire bat). I was cracking up as I took this!


Saturday, June 21, 2008

15 months

Reagan is 15 months old today. And it's getting harder the older she gets. It's the most common question people ask when you're out in public (whether your child is "typical" or not). "How old is she?"...several people asked me yesterday and I told them. I know at times they are taken aback at my answer, but I'm not at a point where I feel comfortable enough to go into detail (I've even considered lying). Usually people just assume that she's tired/asleep and that's why I'm carrying her around. Whatever. It's so bad that I often hesitate to answer, as if they are asking something that's rude and none of their business. But they don't know any better. They have NO idea what this precious little girl has been through in these first 15 months. She looks "normal" and "healthy" but it's frightening what these seizure disorders do to our little ones. We're still prayerful that something (hopefully the ketogenic diet) is going to stop Reagan's seizures and allow her to take off developmentally. I've had dreams where she's walking around like any toddler getting into everything within arms reach...how wonderful would that be!?!?! I want that for her. I want that for us. And I have to believe that God wants that as well. Please keep her in your prayers!

Friday, June 20, 2008

Outing

Reagan and I made the trek back to the hospital to check her beta-hydroxybutarate levels again. What made this trip special is that we did it alone. Yes...I know it sounds crazy but I have never in Reagan's almost 15months of life taken her to any doctors appointment unassisted. I was worried about it because Reagan usually hates riding in the car and gets herself all worked up and hysterical when in the car for any length of time (and then how would I manage to drag her and all her stuff around the hospital). She was so good today. She didn't start fussing until we got into the parking garage and I managed to get her out and into the stroller quickly before she escalated to crying. She was content in the stroller (which is totally new for her too) even as we waited an extended amount of time at the sign in desk just to get the stickers for her tubes of blood (and I got furious with the incompetent people working there). We park and check in at one building then have to walk across the bridge that connects to the hospital to get her blood taken. There we waited another 30min for our favorite nurse to get back from working on the floor only to find out they only needed a finger stick (this one nurse is the only one that can find Reagan's veins without poking her multiple times). She cried during the stick, but recovered quickly and went back into the stroller afterwards without a fight. I put her into her car seat happy and she fell asleep on the drive home. Painless. The trip anyway. Thank you God. Now... for the results. The dietitian called me this afternoon and told me that Reagan's beta-hydroxybutyrate levels are still high at 7.6 (down from 8.3 when she was on a 4:1 ratio). Levels of 5-6 are usually best for achieving seizure control (although some children require even lower). So we are going to lower the ratio of the diet even further...from 3:1 to 2.5:1. Before we added sugar to decrease the ratio...now we're going to add protein powder (beneprotein). We are hopeful that as we continue to decrease the ratio we're going to hit the magic number that is going to work for her. Please keep this in your prayers, because she really needs some relief from these seizures!! Reagan has been drinking the bottles so well lately. Sometimes she'll finish a 4oz bottle off in less than 10minutes...which is just a miracle for her. When we added the nighttime bottle she went from 20oz a day to 24oz, no problem!! I think we could probably make 5oz bottles and she'd drink them! It really is like night and day. At the beginning we didn't even know if they were going to allow us to start the diet because Reagan was such a poor eater and we would have to struggle to get every last ounce in her...and now she's putting them away no problem!! And she's sleeping better lately too! I don't know if it's the extra feeding or what? Last night she was sleeping so well, she didn't wake up at all, I had to force her to wake her just to feed her!!

Thursday, June 19, 2008

More therapy

Reagan had another fairly good night's sleep last night. Although there was a rough patch when she woke up at 1am and did not want to go back to sleep (and I was seriously losing my patience with her). She had yet another good session at physical therapy today. I've stopped keeping count, we've had so many good sessions in a row. Reagan just really seems to have taken to her new therapist. She's so calm and easy going, I think her personality puts Reagan at ease and it helps every aspect of her therapy. It really has been a blessing to see her "working" at therapy instead of crying the whole time. Then this afternoon she also had vision therapy. We were having quite a storm (thank goodness we didn't have to drive to therapy), but her poor therapist showed up at our house soaked! Reagan was good for this session as well. We have this vision box (it's called a "little room") that is supposed to help in her visual development. She laid in her vision box for 20+ minutes today playing with the different things that hang down (and looking in the mirror). It's supposed to stimulate their visual development in addition to teaching them cause and effect (she touches the things and they move/make different sounds).




Wednesday, June 18, 2008

Genetics Results

I finally received an email back from the Genetics Dept on the results of the metabolic screening that was being performed in The Netherlands. All tests were normal. This is both wonderful news and discouraging at the same time. It's wonderful because she doesn't have this rare metabolic disorder (for which there was no real cure), but at the same time we're kind of back to square one. We have no leads and no ideas as to why she has the problems she has. I discussed all of this with the the geneticist this afternoon and he thinks we should come back in for an office visit so that he can check Reagan out and we can decide what (if any) tests to run next. Meanwhile, he's going to go back over Reagan's entire medical history to see if anything jumps out at him. Now...I have some more great news on the sleep front. Reagan went to bed last night around 11:15pm and slept until 4:15am (that's 5 hrs...woo woo!). I got up and fed her almost a full bottle and she was back out by 4:30am and slept until 8:30am (4 more hrs...double woo woo!)!! Unbelievable!! It was like the first week of the ketogenic diet!!! Speaking of...today I contacted the nurse practitioner that oversees the diet and she agrees that we want to give the diet a fair chance at working before we abandon it. She thinks we need to give the nighttime feeding a few more days to take effect and then Friday we can go back in to get Reagan's blood checked again to see what her levels of beta-hydroxybutyrate look like now. She may need her ratio lowered even further. Some kids just do better when they are in a lower state of ketosis...maybe that's the case with Reagan. We're still hoping and praying that this diet is going to provide her relief from these seizures! I ask that you would keep her in your prayers as well.

Tuesday, June 17, 2008

Therapy Pics

Last night actually turned out to be a pretty good night (I'm not sure if it had anything to do with the clonazepam I gave her at 10pm or not). Reagan went to bed around 11:45pm and then woke up at 3am. I decided to give her a trial 2.5oz bottle (since we're going to be adding a nighttime feeding anyway). She was kind of in and out of sleep which made it difficult to feed her, but she drank it all and was out again by 3:30am. She slept until 6:30am at which point she was up for good. So not a lot of sleep total...but the 2 3hr periods of consecutive sleep was nice. Seizures are still rough. I did talk to the nutritionist and we're adding an extra 4oz feeding sometime during the night (around 3-4am). We're going to get her ketones at a constant level and then check her blood again. I'm going to push for checking it on Friday rather than waiting until next week, but we'll see what they say. Below are some pictures from her physical therapy session today. Another great session. She's not really making tons of progress (I think she's doing amazing for the amount of seizures she's still having), but the fact that she's staying in such a good mood and tolerating it all so well is really a miracle in and of itself!







Here she is in a walker. She's going to be getting a stander to use with her AFOs (then the walker will be the next step)



So sleepy...she fell asleep at the end and slept through all the stretching!!

Monday, June 16, 2008

Ketones

Reagan actually had a pretty good night last night...only waking up 3-4 times (every 2hrs or so but quickly going back to sleep each time). Seizurewise things have been the same today as yesterday. I've been testing her urine for ketones (so glamorous I know) and I've noticed that in the mornings she tends to be in the moderate range while at night she's testing in the large range for ketones. This could possibly explain why she's having more seizures in the AM than the PM (since she goes all night without eating). I spoke with the nurse practitioner about it today and we're going to try to work in a nighttime feeding for her to try to keep her in ketosis all of the time. I'm still waiting to hear back from the nutritionist about how we're supposed to do that. We're going to hold out on checking her blood again until her ketones even out. Reagan has been in a great mood today (much like yesterday) and was quite the little angel at therapy. I'm hoping she's as cooperative tomorrow for her PT appt. Still no word from the genetics dept.

Sunday, June 15, 2008

Father's Day

Reagan has been in a great mood all day today...her gift to Mike on Father's Day. She did wake up like clockwork this morning at 7:30am, but I got up with her and we let Daddy sleep in a little. Seizurewise we're pretty much where we were yesterday. She had a lot this morning, so I gave her a clonazepam and it seems to be helping. We didn't do much today for Father's Day...ran a few errands with Reagan (she was SO well behaved) and then watched the US Open on TV (that's a major golf tournament, for those of you that don't golf). No golf today for Mike, he played yesterday. As for this week, we don't have any planned doctors appts, but we may have to go back in to get her blood checked to see what direction to go with the diet. I really want the diet to work but we're kind of running out of time. If it's going to work, it needs to work NOW. Reagan has a lot of therapy scheduled for this week so hopefully we'll have some more good sessions! I'm also waiting to hear back about the lumbar puncture she had done at the beginning of May (this was looking for a possible metabolic defect in how she breaks down sugars). She had a urine test done back in January that tested high for these specific sugars called polyols. But from what I understand it's possible to get false positives with the urine test, so testing the CSF (spinal fluid) is a more accurate way to determine whether or not this is a real problem. The specimens were sent to The Netherlands to be analyzed by the experts in the field, so I'm anxious to hear back about what they did or did not find. Please keep this in your prayers.


Saturday, June 14, 2008

Clonazepam

The clonazepam seems to be helping. Last night (after giving her another dose at around 4:30pm) she had very few seizures (relatively speaking). And then this morning she woke up having a lot of seizures again, so I gave her another one and definitely saw a decline (she's still having them but not nearly as many or clustered one on top another). The clonazepam is not really a long term solution (it's not something that's going to stop the seizures entirely and most people eventually develop a tolerance to it) so we are still waiting to see some positive results to the change in the diet!! Come on diet...WORK!!! Reagan was a handful this morning. Her teeth are still really bothering her. She'll be fine one second, happy and smiling, and the next second she's fussing and crying. We just can't win. She did take a good long nap this afternoon and woke up in a much better mood. She was up a lot again last night. She's waking up like clockwork every morning at 7-7:30am regardless of how much she was up and down during the night...so much for sleeping in on the weekend!! Maybe for Father's Day she'll let us sleep in? I don't have my hopes up.

Friday, June 13, 2008

Return of the breath holding

Last night wasn't exactly the restful night we were hoping for and today has been a strange day. Reagan woke up this morning having SO many seizures. It was just one bad one after another after another. She was handling it like a trouper but it was causing me much distress. My stomach was in knots and I had a few mini meltdowns during this time. Then finally I caved and gave her a clonazepam...she hasn't had one in days and we're never really sure what if any effect they have in helping her seizures but at this point anything was worth a shot. Then shortly afterwards the seizures tapered off and went away (was it the clonazepam or had they just run their course...I don't know). She got a little fussy as she got tired (she was up from 4:45am-6:30am & then 7:30am-10:45am) and the crying sent her into one of the dreaded breath holding spells. I forgot to mention, she did one of these yesterday while we were at the doctors office as well. It had been weeks since she had one and I thought we were rid of them. Guess not. Anyway, the breath holding really did her in and she took a nice long nap from ~10:45am- 1:20pm this afternoon. Then I finally saw her beginning to squirm, so I went over and tried to encourage her to wake up (because she was already VERY late for her next feeding) but she just started crying. So I picked her up and she proceeded to go right back into another breath holding spell, until she pretty much passed out. So here I was holding her, completely limp but she needed to drink her bottle. So I encouraged her to drink it in her sleep, it was a struggle but she eventually finished it and then I put her back in her swing to sleep some more. Of course it never occurred to me that I should sleep while she was sleeping, which would have been the smart thing to do. I always think I'll just do a few more things THEN I'll try to lay down and get some rest. But she can sense it and never fail the second I lay down, she's up! She finally decided to wake up around 3 and she was in a great mood but about 10min after waking the seizures started back up again. She was just having non stop seizures...she even had 2 of the short (~10-15 sec) tonic seizures. I was a nervous wreck and at 4 I finally decided to put in a call to the epilepsy clinic (even though I knew the nurse practitioner was out and I would probably have to talk to our old neurologist). As luck would have it, the nurse practitioner called me back (they obviously don't have a problem calling her at home...good to know) and she basically said that we need to try to tough it out and to use the clonazepam as often as needed (every 8hrs). She said that it could be the teething, Reagan could be coming down with something, or she could just be adjusting to the new ratio...but in order for us to really know if there's any chance of it working we have to give it a little longer. OK, but please God give this baby some relief from these seizures soon!!!! To top it all off, her top teeth have broken through and she's been a quite irritable tonight. No not tonight...we need some rest!!!!


Thursday, June 12, 2008

Doctor switch

Last night was ROUGH night. As most of you know, Reagan sleeps in a swing at night and her swing died last night. We thought it was the batteries since we go through them constantly (so much so we should own stock in Duracell and Energizer), but nope it was really dead. And this is not the first swing we've had bite the dust. It's the second. Granted, I'm sure we use it way more than intended, but still. Actually, after some research I found that the most common complaint about this swing is the motor dying out. So I guess it's not just us. Needless to say, we were up all night last night with Reagan. Unfortunately, she is very particular about this swing (the fisher price aquarium swing that goes side to side instead of front to back), so we didn't have a choice but to go today and buy the same swing. But we did buy a different version of it...one that you can plug in. Reagan has been in a much better mood today than yesterday. Go figure, no sleep doesn't bother her at all. This morning she had another great physical therapy session. I'm so happy to see her doing well and actually making some progress. Baby steps. Then this afternoon we had our appt with the new neurologist (the one from Boston). We both liked him and are in agreement about switching over to him. He just seems like he'll be more involved and aggressive in Reagan's treatment. He thinks we should give the diet another couple of weeks (to make sure that we give it a fair trial) and then if we don't see improvement we'll try vigabatrin next. As of now, we haven't seen any improvement in her seizures since the ratio change. She's still having A LOT and they've actually been particularly violent...reminiscent of the ones we saw during ACTH treatment but now her whole body twists as she does it. I don't like these at all. She did manage to take a pretty good nap late this afternoon after we got back from her doctor's appt/buying the new swing...too bad she woke up in such a rotten mood. She's been quite the fussy butt tonight. Are these teeth ever going to break through? I hope this doesn't interfere with her sleeping (at least we have a working swing). We all really need a good night's rest tonight. Please keep her in your prayers!!

Wednesday, June 11, 2008

More teething woes

I think the teething has started back up again. Reagan has been a tiger today. She's been taking small 10-15min naps and is very fussy. She had OT this afternoon and let's just say it didn't go well. She seemed fine before we left the house, but as soon as I put her in the car she started crying and cried the whole drive to therapy and then proceeded to cry through the majority of the session. I fed her a bottle towards the end and after she finished it she had ~10min where she was as happy as can be. She was smiley and talkative and even held a toy for longer than she's ever held anything (of course I think it was at just the right angle in her hand so she couldn't shake it off, but whatever). Then I put her in the car and she was quiet for about half of the drive home and then started back up again. She did take a loooooooooong nap from 4-7pm, then woke up to a ton of nasty seizures and the same lousy attitude. It looks like she's got 4 teeth on the top that are trying to break through. I'm afraid we're in for more miserable days ahead. We're still waiting to see some sort of response to the change in the diet. Nothing just yet, but the ketone strips are still testing very high so it may just take a little more time. Tomorrow Reagan has PT in the morning then an appt with the new neurologist in the afternoon. I'm anxious to see how that goes. I hope she's in a better mood tomorrow.

Tuesday, June 10, 2008

Game plan

I spoke with the nurse practitioner this morning about the lab results and Reagan's levels are sky high. They were expecting her to have a high level of beta-hydroxybutyrate somewhere around 6 and she's at 8.3! This is both good and bad. The good news is that her levels are high as expected and by lowering them (by changing the ratio of the diet), we may potentially see a change in her seizure pattern. The bad news is the levels are so high they put her at risk for metabolic acidosis so we're still waiting on some additional lab results that will give us more insight into whether or not that's a real concern. So the plan now is to change her ratio from 4:1 to 3:1. Using the Ketocal this is a fairly simple change- we just have to add some sugar to the formula. Sounds like a win win for everyone involved. The game plan is to give it a week at this new ratio and see how she does. We're hoping that this change will do the trick and we'll begin to see a decrease in her seizures. Please keep this in your prayers. This afternoon we took Reagan in to get cast for her AFOs (braces to help keep her feet flat instead of pointed). There was a lot of stretching involved and she didn't like it. Luckily, once they got her all wrapped up it hardened within minutes. We picked the purple butterfly AFOs. I would have preferred something in pink (she wears more pink than purple), but they didn't have anything nearly as cute in pink. They should be ready in 2 weeks, so we'll have to take her back in then for a "fitting".

Monday, June 9, 2008

Now we wait...

I wish I could say that everything went smoothly today...not when drawing blood is involved. Reagan's a difficult stick and she didn't disappoint today. Luckily her teeth didn't seem to be bothering her much today and overall she was in a pretty good mood. We had a long wait for our appt at the epilepsy clinic with the nurse practitioner that oversees the ketogenic diet (normally that would really irritate me, but I really like her, so I didn't mind too much). She examined Reagan, asked some questions, and then basically said that whatever changes we are going to make with diet are dependent on the results of some bloodwork that we would need to get done. More specifically, they needed to see Reagan's levels of beta-hydroxybutyrate. If they are high (which is what we are expecting), then that would indicate that she's in deep ketosis which could be causing her to have more seizures (although most kids do better the more ketotic they are). In which case we would reduce the ratio of the diet (from 4:1 to potentially 3:1) and hopefully see some improvement. So after the appt, we went to get the blood drawn (they don't do it in the clinic, they send you down to the pathology lab to let the phlebotomists to do it). I warned them ahead of time that we needed someone experienced because Reagan is such a difficult draw. Of course the first woman that attempted it failed. She must have moved the needle around in Reagan's arm for 5minutes or so trying to locate the vein (which she never found). She even called in someone else who gave it a try and couldn't find it either. After that whole fiasco, I told them that I wanted the one woman who has been successful with Reagan in the past (who was at lunch). We waited another 30min until she came back from lunch and even using the arm that the other people couldn't find a vein in, she got it on the first stick! No problem! From now on I am DEMANDING her every time. Normally I tell them I want her and they just poo poo me and tell me she's busy. But I'm putting my foot down now. No one else touches Reagan! Anyway, long story short...we're still waiting to hear back on the results. I'm hoping we'll know something by tomorrow so we can change the diet accordingly. I'm so sick of these seizures.





Sunday, June 8, 2008

Sunday

Today has been a better day for Reagan. She's definitely been less fussy...a lot of the swelling in her gums seems to have gone down. Unfortunately the teeth still haven't broken the skin, so I'm sure we'll have more teething drama in the days to come. Her sleep has been very erratic lately. For the last several days she's been taking little 15-20min cat naps during the day and then waking up every 1-2 hrs at night. She did manage to finally take a long 2hr nap this afternoon, which is good because she really needed some quality rest. She fell asleep in Grandma's lap outside while I planted flowers in the flowerbeds. I think being warm like that helps her fall asleep, because twice last week she fell asleep as soon as I put her in her warm car seat. Reagan has her appt tomorrow morning at 9:45am with the nurse practitioner at the epilepsy clinic to see about adjusting the diet. They are going to check her blood (for levels of I don't know what) and then determine what course of action we need to take. I'm hoping that this tweaking of the diet is going to be just what she needs to get back on track to having less seizures. Keep her in your prayers...

Saturday, June 7, 2008

Rest

The teething continues...poor girl, she can't catch a break. Reagan's been whiny/fussy all day again (and the sleep last night, well just look at the picture below...her onesie says it all). Luckily, I got to take a break from it today (or unlucky for Mike). I had a spa day today. It was actually a Christmas present from Mike 2yrs ago when I was pregnant with Reagan. I decided to save it until after I had given birth, but then I was breast feeding and Reagan was colicky so I never found a chance to get away. Then after the seizures began I just didn't feel right pampering myself...how could I go relax with my baby at home having seizures. I'll tell you...it was hard (really). I guess it's something you can't ever get away from. During my massage this morning I found myself spending those precious moments of silence in prayer for Reagan. It was nice to have a little quiet time away from the teething woes, but now it's back to reality and those gums are still as swollen as ever. Hopefully she can get some rest tonight.




Friday, June 6, 2008

Let the teething begin

Well, Reagan's definitely teething! It's funny, we waited so long for the first two teeth and she's already getting more...I guess she's on a roll now. She has been so fussy all day long today. Her upper gums are very red and you can just tell she doesn't feel well. I guess she gets the whiny gene from me. I've been pumping her full of tylenol all day today trying to prevent a fever and ease the pain (it's actually an acetaminophen suppository, gross I know, because she can't take regular liquid tylenol because of the carbs). On a positive note, she has been drinking her bottles no problem...the Ketocal is best served cold, so I think she finds the coldness soothing on her sore gums (although she won't touch a teething ring). On average I would say she has had less seizures today than yesterday, but she's had two today that were possibly small tonic seizures. It's hard to say because every time she's had a tonic one previously, they've lasted at least a minute or so in duration and there was really no question what they were. These two today were only a few seconds long, but had the same constant trembling characteristic of the longer ones (followed by some small jerks). I don't know. I don't like it. Monday can't come soon enough for me.

Thursday, June 5, 2008

Seizures

Infantile spasms is an especially insidious form of epilepsy in that not only are the children plagued with seizures, but the irregular activity it causes in the brain inhibits and often causes regression of the child's development. Reagan's development has basically been at a complete standstill since her diagnosis; she's made "progress" in some areas but hasn't reached an actual milestone since the seizures began. Which means that Reagan doesn't sit up alone, she doesn't roll, doesn't crawl, and of course doesn't walk. This makes daily life for us very difficult because we basically have to carry her around with us 24/7...and now that she's 20+lbs that's not a very easy task. She's also so fussy that getting any free time by putting her in her jumperoo, swing, or on her back/tummy on the floor is nearly impossible. If she happens to tolerate any of those things for any length of time it is generally only with our constant involvement and encouragement. I can imagine how wonderful it would be to be able to sit her down on the floor and let her "play". Or to put her down on the floor to crawl around or walk after me...things that most parents take for granted. And I pray that someday we'll be able to do just that. Many kids with infantile spasms eventually reach these milestones...it just takes a lot longer and it usually doesn't happen until they achieve some sense of seizure control or freedom. Yet another reason why we want so badly to get a handle on these seizures Reagan is having, they are literally affecting every aspect of her life (and our lives). If Reagan has less seizures...we have a good day. If she has more seizures...we have a bad day. Today was a bad day. It started out well, with her having less seizures last night and early this morning, but took a turn for the worse when she had a scary tonic seizure (the first since starting the diet and only the 4th one ever) at 10am. Afterwards she had lots of smaller seizures (one after another), cried for about 30min, and then slept like a rock for 3+ hrs. Poor girl. She slept through half of her PT session and her entire session of vision therapy. It's been a rough day for her. We're counting the days/hours until they adjust the diet and praying that it will give her some relief from these seizures. Please keep her in your prayers!

Wednesday, June 4, 2008

More teeth?

Reagan has been a handful today. She was up a lot last night (having a lot of seizures) and today she's just been all around fussy most of the day! During one of her crying fits, when her mouth was wide open, I saw what I think are more teeth coming in. Her two top front teeth. Her gums are red and there's a little white sliver on the left side (just like we saw before the bottom two came in)...that could explain why she's been so cranky (and potentially why she's having so many seizures...teething can lower their threshold for seizures). She's having so many seizures right now...it's very frustrating. I hate to see her go through this. I wish they would just change the ratio of the diet now, but they want us to wait and come in on Monday. SO frustrating. I want relief for her NOW! Maybe they'll decrease once she gets over the initial stages of this teething? Please keep her in your prayers!

Tuesday, June 3, 2008

Therapy

Reagan had a great day...therapywise. She had OT first thing this morning. She was well behaved and cooperative for the first half of her the session and then got a little fussy for the second half. Then for her PT appt this afternoon she was an absolute angel. I think her therapist was in shock at how good she was being. Two great PT sessions in a row...this is a new record. Reagan was reaching and grabbing at toys (purposefully) which is great for her. She cried a little at the very end when the therapist was stretching her legs out for sitting (we knew this would happen so we saved it for the end), but she stopped immediately when she picked her up and that was that. A great day for therapy. AND she slept on the way home from both sessions...instead of her usual crying the whole way home. She didn't take a nap this afternoon and then crashed for 3 hrs tonight...so I'm fairly certain I'm going to be up all night with her! And she's been pretty cranky tonight so this is going to be fun!

Monday, June 2, 2008

Home again

We're back! Reagan actually did well on the car ride home, she slept a little more which is always a good thing. Bear was happy to see us...but I think he enjoyed his baby-free weekend. We had a great time but we're exhausted and looking forward to sleeping in our own bed tonight (wishful thinking). Reagan's still having lots of seizures and I'm hopeful that when they tweak the diet next week we might see some good results. I'm not sure why they want to wait, but they told us to come in next Monday morning. Reagan has a busy day tomorrow with occupational therapy first thing in the morning and physical therapy in the afternoon...so I'm going to wrap it up and get to bed!

Sunday, June 1, 2008

Gone Fishin'

Last night was one of those up and down nights. Reagan woke up a lot and then finally decided that she wanted to sleep from 6am-8:30am. This afternoon we went fishing...a first for Reagan. She fell asleep on the way to the boat and slept on the boatride out. She did pretty well on the lake. She got a little whiny but I think she was just getting hot (nothing a little juice can't cure). She took another nap about mid trip...I think she liked the rocking of the boat (maybe we need to live on a house boat). She was out like a light and probably would have slept forever but Daddy and PawPaw caught fish simultaneously and woke her up in all the excitement! We'll be heading back home tomorrow probably sometime around lunch time so please keep us in your prayers for a safe and stressless trip. It would be GREAT if we could get her to sleep a couple hours of the 4hr drive.

Kicking back...relaxing!


Nap time!


It's always a competition!