Updates on Laurel: March 2001

Well, we had a long conversation with the pediatrician this morning about Laurel...it turns out that the doctors don't actually think she has infantile spasms YET, but her brain wave pattern makes them think that it is extremely likely she will develop them within the next 2-3 months. The doctor told us now, she said, because she thought we would want to know so we could enjoy Laurel's milestones as much as we can before they all go away (because once the spasms start, they will most likely fry what's left of her brain until all of the progress she has made will be gone). Now, I have to say I am NOT following the logic here. Frankly, I would enjoy her progress a lot more if I DIDN'T know it was all going to go away! I mean, what am I supposed to be thinking here? "Wow, look at Laurel grab those plastic rings! Better enjoy this now, because in three months she won't be able to do this"? (Can you tell I'm angry?)

Nevertheless, there is one reason that it IS good to know now. I learned from research I've done on the web that there are five factors that predict the outcome with infantile spasms (two of which we're already hosed on - whether the baby already has a brain injury and whether she has had seizures before), and the one that we can control is how quickly after they develop they are treated. What I didn't get a clear answer on from the doctor is, how can we tell when they've started. She has spasms now, but they're apparently not THE spasms. Do we look for a different kind of spasm? Schedule regular EEGS? If I can't get an answer from her (which I may not because I don't think she actually knows that much about this) I will keep tracking down the neurologist like the dog that he is (OK, that's a little harsh, but so far our experiences with the neurology dept. here have not been good and I haven't talked to anyone who HAS had a good experience with them).

So that's where we are now. I'm glad that Laurel hasn't developed this YET but on the other hand, this is going to be like waiting for the other shoe to drop. The prognosis is incredibly grim if it does...I don't know how realistic this is (the doctor sounded like it was pretty much inevitable), but please pray that it never happens...

Thanks everybody for all your support and all the prayers you've already said!

Before Laurel was born, we had signed up with an in-home provider who just happened to be one of the few in town who took special needs children. I called her a week or so after Laurel came home from the hospital and told her the situation. She told me then, and subsequently when I gave her updates, that she would meet Laurel, and if that went well, she would try her for a week. That seemed fair to us (although kind of unnerving if she decided that it was too big a hassle after all). Anyway, she was supposed to call and then come by last Sunday to meet Laurel, and she did neither. Suspecting the worst, I called her this morning and was told that her husband had decided that she couldn't handle Laurel and that she couldn't take Laurel. (Excuse me, but shouldn't SHE be the judge of what she can and can't do? And he hasn't seen Laurel or a tube feeding, so how could he know if she's too much trouble?) So now, here I am with Laurel needing day care three days a week starting a week from next Tuesday and no day care.

It's not quite as dire as it could be - I sprang into action immediately and got a couple of names. The first one I called (the other name I had I had gotten a bad review of, so I wasn't enthusiastic to call her) sounded a little wary ("What KIND of special need child are we talking about?") but it turned out that tube feedings are something she has experience with, and that she has an opening. I told her a bit more about Laurel and our dilemma and she suddenly said, "I'm going to help you. My son had a heart condition and died at 23, and I've always felt I should do something in payback for the many people who helped us." So we are going to meet her next Monday afternoon. The bad news is, she's MUCH farther out of the way than our original day care choice. But she sounded like a wonderful person, and I'm hopeful that this will turn out OK. (But still really PO'd at the original provider. THANK YOU for telling me so $#%%!!! far in advance! You've only had two months to back out! And you didn't even have the courage to call me yourself! AGHH!)

BTW, after all of this I decided to take a mental health day today. :)

I CAN'T TAKE IT ANY MORE! Now we got a message that Laurel has IS after all and it looks like my cat's cancer is back! As I said in my post yesterday, I took a mental health day after our day care problems. One of the things we did was go to meet another family in the area with a 3-year-old who has similar, but more severe, brain damage. (We had a very good time - their daughter is clearly frustrated by her physical limitations, including an inability to talk, but she is bright and happy and sweet and does manage to communicate a lot anyway [they are going to get a computer to assist her when she gets older]. We went swimming and brought Laurel in and she actually liked it! Which shocked us because this is a kid who screams like her arms are being pulled off when we try to bathe her. We will definitely try getting in the bathtub with her next time.) Anyway, we got home and found a message on our answering machine from Laurel's pediatrician, saying that her neurologist wanted her to start the treatment for infantile spasms immediately and where did we want the prescriptions phoned in. Now, the treatment is NOT something to do lightly - side effects include high blood pressure, extreme irritability/inconsolable crying, weight gain, swelling, increased appetite (and here we have a baby who can't tell us how much to feed her), apathy, aversion to being touched, and regression to a newborn state (these are, fortunately, all reversible, but STILL...). I have read so far of two cases of children being hospitalized as a result (and that's of maybe 20 cases that I've read about). And remember, we had been told that the doctors didn't think Laurel had IS yet, just that she was at extremely high risk for it. I called the doctor's answering service (the office was closed by then) and made them page the doctor on call, but all he had been left with was the dosing information. We stressed to him that we weren't doing ANYTHING until we had talked to the neurologist ourselves, and he said that he would convey that message to the neurologist on Monday.

Then, this morning the third pediatrician from the practice called and said that the message that our doctor had given her was that Laurel already HAS infantile spasms and that she needed to begin treatment immediately. As you can imagine, we're incredibly worried, but still are insisting on talking to the neurologist, especially as we are concerned that no one has spoken to Laurel's endocrinologist yet. The treatment they are proposing (admittedly one of the ones found to be most effective) is high doses of ACTH, a hormone released by the pituitary that acts on the adrenal gland, and Laurel has some adrenal issues already. Anyway, this doctor has now also said that she will be certain to have the neurologist speak to us. Hopefully with two doctors working on him he will finally break down and talk to us! But meanwhile, this is going to be a very long weekend...made even longer by our worries about our cat...

Our wonderful sweet old cat, Fuzz, has had mammary lymphoma twice already. We have had "mastectomies" performed both times, and the first time it was about a year and a half between recurrences. She had just gone for her six-month checkup with x-ray in December (yes, somehow amazingly in the middle of everything going on with Laurel we actually managed to remember to haul the cat off to the vet...we love this cat terribly...) and everything had been fine. But something about the way she was last night bothered me, and I picked her up and turned her over. I wasn't prepared for what I saw: a large lump at least three times the size of her previous lumps, thick with blood vessels and actively bleeding, and at least two smaller lumps. I'm afraid that the end is nearing for poor Fuzz. She doesn't seem too miserable yet, but this came on so quickly I can't imagine it will take long...we made an appointment for Tuesday, because meanwhile on top of everything else they are calling for a snowstorm of historic proportions here tomorrow so we figured Monday was a no-go (Tuesday may be as well, but we'll see). But I don't have much hope.

Oh, and I should add to my worries with Laurel...as I mentioned yesterday, she was due to go to day care in a week...but now I'm thinking that this is just no time to put her in day care. But the treatment course is a month...so if we go ahead with it, I'm going to have to see if my boss is at all willing to consider letting me take another month of unpaid leave...keeping in mind that I have already worked part-time two weeks longer than I said I would. My one trump card here is that it would probably take her at least a month to replace me, and then that person would need a lot of time to be brought up to speed. We can get financial assistance from our families if we really need it, so I'm not SO worried about that.

But I just don't know how much more I can take...sorry so long, thanks for reading...

OK, deep breath here...we are going ahead with the treatment for infantile spasms for Laurel. We spoke to the neurologist, and had him speak to the endocrinologist. The endocrinologist is OK with the treatment as planned, and we think that, as scary as this is, it's probably the thing to do. We were offered the choice of having her start treatments at home with a home health care nurse dropping by or having her start them in the hospital...with some soul searching we have decided on the hospital. I know she would be happier at home, but if something awful happens (her blood pressure shoots up, potassium levels go crazy, etc.) this will give us the best chance of catching it quickly. We will try to be with her as much as we can, hopefully between the two of us we can be there most of the time (the problem is that Bob can't work at the hospital while she's sleeping like he is doing now at home). We're so scared though...

Meanwhile, we're also depressed because when we went out to meet with the daycare provider I found on Friday, there was another baby there about Laurel's age and it brought home to us how much brain damage our little girl already has. That baby was so much more attentive and coordinated than Laurel. Waaah...

The daycare provider was OK but not great. I have a feeling she is more of a babysitter than really doing anything with the kids. I guess she will have to do for now (she's pretty much our only choice), but we will have to keep looking. I think once Laurel is a little older, there might be a few other choices. Sigh...I'd quit my job, but that would mean giving up the house and probably ultimately my career, because there are only about 4 environmental jobs in this town and the competition is incredibly fierce, and we can't move because Bob's job is one of only a few of its kind in the world (he writes software programs to analyze data from radio telescopes...and his PhD is in astrophysics and he's not willing to consider writing programs for something else, and he's not got the background at this point to get a job as a professor). But this is a long-standing debate in our house...sorry...I think everything's getting to me right now, I am so scared and worried and depressed...

I need help from parents of babies with bad reflux/throwing up problems-symptoms, what you did about it. Laurel (as if she didn't have enough problems) has been increasingly throwing up (and I do mean throwing up, not spitting up) either during or after her feeding. It started out as maybe once a day and probably only if she didn't burp well or was really agitated and now we're lucky if she DOESN'T throw up once a day. Most typically, she throws up about 20 minutes after the feeding after a large amount of churning and rolling around in her stomach and usually accompanied by a lot of farting. Sometimes she throws up fairly early in the feeding, and if she does that, there's usually a lot of mucus in it. She is on ProSobee; regular formula, LactoFree and Nutramigen have all made her throw up worse and have explosive diarrhea besides (which she doesn't have on the ProSobee). She's also been on Zantac for a week, which seemed to help some at first (volume and force decreased considerably) but now it just seems like she's worse than ever. The doctor is going on about surgery because he thinks it's due to her brain damage. It is true that babies with her type of brain damage sometimes have problems with their esophageal valve and need surgery, but she was fine when we brought her home, and besides, if HIS stomach churned the way Laurel's does, I bet HE couldn't keep it down either. So what I want to know is, has anyone else's baby had similar symptoms? Did you find anything that helped, and if so, what? Thanks!!

(And by the way, I specifically asked if it was OK to begin the treatment for infantile spasms with this going on, and they claimed that it was...I am actually hoping if they observe her in the hospital, maybe some light bulbs will go on...)

The horrible thing is that we thought the hard part was DONE. With this new diagnosis we feel like we have descended back to the sixth level of hell (level 7 is where either she dies or we find out that her little brain is permanently, completely fried; we used to measure how bad things were while she was in the NICU by which level of hell we were in today, our little attempt at some black humor to carry us through). We are right back to worrying about whether she's going to end up mostly a vegetable or not and we thought we were past that! But we have been worried because she has seemed less and less attentive and now I think we know why - because she has been developing this disorganized brainwave pattern (by the way, this sometimes happens to perfectly normal kids, although it's more common in those with brain injuries). When the treatment we're about to try DOES work, I understand it's amazing - we have seen testimonials from people who say that it revealed babies they didn't know they had. Problem is that it often doesn't, and that sometimes it relapses (and that, as I've mentioned before, the side effects are awful). We think there might still somehow be kind of a clever baby in there if we can just get her out; every once in a while, she manages to organize her brain and do something pretty cool. My favorite is the time she was trying to grab Bob's finger but just kept missing it. So she reached out to his wrist, crept her hand up his till she got his finger, grabbed it briefly, and then pulled her hand back and nailed his finger good! Her brain injury does not necessarily mean that she is mentally retarded (although it could); the little girl we met last week (with a similar but more severe injury) was severely physically handicapped but one of the brightest kids in her preschool class. But the infantile spasms, if not cured pretty quickly, have a 95% chance of leaving her severely mentally retarded. And there are lots of kids for whom they never find a cure...ugh...

OK, Laurel is going into the hospital tomorrow, which is good, but can I whine a little? I feel stupid for even whining...but I'm not a happy camper because I had hoped they would put her in the pediatric unit and it would be like it was before (when she was in the regular unit right before she was discharged) where she was in a private room, Bob and I could take turns staying with her, and if we needed to leave for a little while it was OK, the nurses would keep an eye and ear out. This time we are going to be on the epilepsy unit and have to share a room and the other kid's mom is staying with him so I have to be the one to stay every night. Also, there's a nursing staff shortage so we've been told that we don't dare leave - MAYBE long enough to bring up some of the lovely food from the cafeteria but that's all. And I was told now that she would stay 3 or 4 days, not 2 like I was originally told. UGH. Of course I will do what's best for Laurel, and this is it. But man, I don't even know how I'm going to sleep with strangers in the room...it's hard enough to sleep at the hospital with the nurses and doctors barging in all the time...yuck...

OK, I know this is really petty compared to the much bigger problems we have. Sometimes I think when the big stuff is going on, it's the little stuff that really gets to me! Oh well, anyway, I'll let you know how it goes when I can...

BATTLING DOCS! AUGGGHHH!!!!

Wow have things not gone the way we thought today....

To begin with, turns out the little boy we were supposed to room with was a wild child. The nurses had mercy on us and found us another room. (I think they may have actually had someone transferred out!) They said, "He's bouncing off the walls, you'd never have been able to sleep." What sweethearts! They've been a little clueless about how to handle Laurel (they don't get that many babies, let alone tube-fed babies) and as predicted, haven't been around that much, but they've been very nice to us. Anyway, since I have to work tomorrow Bob is staying down there tonight instead. So here I am posting. (Could someone please repost this tomorrow? I know lots of people are wondering what's going on with us and I REALLY have to work hard tomorrow morning and get back to the hospital in the afternoon, so might not have the chance.)

We had been warned by the nurse who called us last night to let us know Laurel was going in this morning that they'd do an EEG (brain wave recording) in advance of the treatment to get a baseline, so we weren't surprised when they started hooking Laurel up. Usually they do an EEG for about half an hour and about midway through hooking her up, I commented that Laurel was falling asleep and they'd better hurry if they wanted to get any of the recording while she was awake. The technician said, "Well, I'm sure she'll wake up again before we're done recording." I looked at her funny and said, "How long are you planning to do this for?" and she said, "The doctors told us at least overnight." Huh?

So anyway, we took Laurel back to the room (and now I know one reason she had to be on the epilepsy unit - all the rooms are wired so they can run EEGs in them just by plugging a little box into a wall, and they have microphones and video cameras to record sounds/noises during the EEGs). The tech had said she figured the doctors would be around to talk to us in the afternoon, but the nurse said she doubted it so I went to my office. Got back three hours later and found out that Bob had had a nice long conversation with the doctors...and the attending physician at the hospital (not Laurel's regular neurologist, who is apparently out of town)doesn't think Laurel has infantile spasms or is about to have infantile spasms, he thinks she's got some completely different form of epilepsy (he's not sure what). And he doesn't want to give her the ACTH treatment. And he doesn't believe that infantile spasms cause brain damage (an opinion that apparently some other doctors, but as near as I can tell by no means the majority, share), so he doesn't see any rush to treat for them. Like I said, AUGGGHHH!!!!

At any rate, he is supposed to read the EEG tomorrow and come by the room sometime between 2-5 to discuss HIS diagnosis and plans for treatment (believe me, I'll be there - I am SO sorry I missed his visit tonight). I would love to believe that he's right, but if he's wrong we could risk Laurel's brain being further damaged while we footle around with other treatments. I am thinking of running not walking for an expert opinion - the hospital here is a decent one, but there are doctors who really specialize in infantile spasms, epilepsy in children, etc. and these people are not them. After I get done here, I'm going over to post on the infantile spasms board on Yahoo to see if they can recommend me a good doc.

Tomorrow night I am DEFINITELY staying at the hospital (unless they decide to discharge Laurel), so may not get to post again until the weekend. Meanwhile, here I am all by myself tonight...it's so weird and lonely and quiet and I worry about both of them. Laurel's being really fussy tonight, too, not exactly a surprise since she's in a strange place and even more importantly, there are all these nasty things stuck to her head and a big stocking cap over the whole thing. And she hates hats! I doubt Bob will get much sleep tonight - hope I can...

Well, we're home from the hospital. Laurel isn't going to get the ACTH treatment at this time, but will start a different drug tomorrow. Here's the upshot:

1) Her EEG (brainwave pattern) did not look as disorganized as it did a couple of weeks ago, probably because her dosage of phenobarbital (anti-seizure med) was upped. Actually, one of the docs said that her brainwave pattern was pretty well organized for a 4-month old. He did say, though, that it's young for her age - that most babies have developed something called an "alpha rhythm" by this point and she has not. He added, though, that even some normal babies can take up to 6 months for this, so hopefully she's just delayed.

2) It took 2 days of EEGs to see this, but the docs finally determined that there was a very slight flattening of her brainwaves during the type of spasms we were most concerned about (she does some other twitches and jerks as well, but there was one type that we were particularly concerned about because of the way her eyes dart off to the side and the weird expression she gets on her face). This is a worry, because infantile spasms do the same thing only to a more extreme degree. I was actually a lot happier yesterday, because at that point they hadn't seen the flattening and had only seen spikes, and the doctor told us she was simply having some difficult-to-control focal seizures (seizures stemming from one damaged spot on the brain). Now they are telling us that although she is not currently having infantile spasms, she is still at very high risk for developing them. Yesterday I felt like her sentence had been commuted; today I feel like she's merely received a stay of execution.

3) However, because her EEG does look mostly pretty good at this time the docs decided not to go with ACTH and to go with another med that is often useful for difficult-to-control seizures, and sometimes works against infantile spasms as well. It's called Depakote. It shouldn't make her as miserable as the ACTH, but the scary thing is that there is a small chance it will do liver damage, and she'll have to be monitored closely for that. We're supposed to start the Depakote tomorrow.

You know, frankly, I'm pretty depressed tonight. I feel like I should be happy - we're home and Laurel doesn't, at least for now, have to go through the miserable ACTH treatment - but like I said, I feel like all she's gotten is a stay of execution. Also, her throwing up is just awful lately and while she's starting the Depakote (which takes two weeks to build up the dosage) the docs don't want her trying any other meds to control that (we've already tried and failed with Zantac). We have tried just about every formula except Neocate and her doc seems really reluctant to let us try that. We're really doubtful that the woman we talked to last week is going to want to take care of her with this going on (and we didn't really like her that much, anyway - we think she'll pretty much just park Laurel) and don't know how we're ever going to find someone who wants to care for a barfy tube-fed baby. And we feel like prisoners ourselves because we don't dare feed her in public (the last time we fed her at the mall the barf flew 5 feet - it was quite a scene). And then, I'm depressed for some more ordinary reasons. The physical exam didn't go well for our cat Fuzz - she had many more lumps than even I realized, and the vet said the reason the big one was bleeding was because it's growing so fast it's ulcerated. She's still considering surgery for Fuzz (we're just awaiting some x-ray interpretation because there might be a spot on her lung) but I know that's not going to prolong her life for more than a few months at this point. And finally, I've seen posts from some of you other ladies about your hair falling out and you not losing the weight from your pregnancy; well, I'm right there with you. Every time I wash my hair it practically comes out in clumps, and I still weigh 10 pounds more than I did when I got pregnant. This morning the nurse asked me if I had another one on the way. I feel like such an unattractive blob. So, all in all, I'm in a pretty deep blue funk tonight, and Bob's mostly just getting annoyed with me.

But I should go; I need to eat and then feed Laurel (and get barfed on again, sigh...)

She's been pretty groggy from her new seizure meds, but I think they *might* be helping. Although she's seizing now, sigh...

Also, we switched her formula to Carnation Good Start a couple of days ago...I think it might be helping some, I think she's only thrown up about half as much the last couple days. I'm worried it might be giving her diarrhea though.

I'm home today, while we're looking for someone to care for her. We interviewed someone today who can come to our house 2 days a week and watch her. I think she might be OK...if we could just find someone for one more day we'd be set.

So overall, I guess things are a bit better today! :)

Just goofing off for a moment before I have to finish getting dressed and get Laurel's lunch ready...

I'm exhausted - I think Laurel's reflux is getting worse and she was up a lot of the night. I'd hoped to take her to a meeting this morning (a fairly informal meeting of staff for "natural history" organizations in the area - I qualify b/c I staff something called the Rivanna River Roundtable - and lots of those people have followed Laurel's story closely but haven't had a chance to meet her). But I was just delirious and couldn't do it (I've had a couple of hours of sleep since then).

Although Laurel seems to be coughing and choking more, on the other hand, we switched her formula (to Carnation Good Start) and she's actually throwing up considerably less. So THAT'S good. We think a motility drug (something to make the formula move through faster) would help too, but the problem is that the most commonly used one lowers the seizure threshold, so that probably won't work (our pediatrician is going to double check our options on this). She has a lot of gas, too, and our ped just approved simethicone, so Bob's going to pick some up on the way home.

We *think* her seizures might be getting better...keeping our fingers crossed...she is still moving up on the dosage on the new seizure med, it'll be another 5 days before she is up to full dosage, so if she's getting better already that would be a really good sign.

Well, ugh, THAT didn't go well!

So...Laurel was coughing and choking before I even started the noon feeding. I guess it's not surprising that she threw up. And worst of all, she had more spasms between about 12:00 and 2:30 than she had had for the previous day! She had physical therapy at 2:00 and was having spasms for the whole first half hour (they were far enough apart that the PT was able to do a little bit in between). I *am* happy to report that Laurel was back to her old self in terms of what she does when you put her on her tummy - she usually gets mad and immediately rolls to her side or back, but the other night, we put her on her tummy and all she did was lay there and whimper. It was heartbreaking! But the PT tried to get her interest with various toys and couldn't get her to notice ANYTHING. She has always had scary long periods of inattentiveness, but she has been an absolute space cadet since her phenobarbital level was upped a couple of weeks ago. Hopefully it will get better - but we always wonder (how much of this is drugs, how much is brain injury), and it's SO wearing to spend day after day where she just doesn't seem to notice anything. Bleah...I HAD been feeling better...

WRT the spasms, I think the doctors are confused themselves. It has some of the earmarks of "infantile spasms" (a nasty, difficult-to-control form of epilepsy that many doctors but I guess not all believe causes brain damage in and of itself) but not all of them. So they are mostly saying it's not - on the other hand, I've been posting to the Infantile Spasms group on Yahoo! Groups (amazing, there's a group for everything) and I've had a couple of people tell me their babies had symptoms identical to Laurel's and they WERE diagnosed with IS. It wasn't clear to me that these docs knew how to classify what Laurel has now except that they think it may be a precursor to IS. The medicine they put her on is used often for difficult-to-control spasms and is one of the most popular, but not THE most popular, treatment for IS as well (the most popular treatment is the ACTH treatment that I had thought they were going to do. But, the side effects of that are pretty evil, and they didn't think they were justified at this time). Since we thought we were seeing some progress and she's still only to the halfway point on the dosage, I guess I'm inclined to stick it out with this med for now. One thing that I know ONLY because someone in the IS group told me, though, is that there are interactions between the new med and phenobarbital - her phenobarb level could shoot up as a result of taking this. The neurologists had no intention of monitoring for that! (And this information is right on the manufacturer's dosing instructions.) We have brought it up with her pediatrician, though, and she is going to take care of the monitoring. I mostly hate these neurologists though, and if I don't think she's getting better we will drive to Richmond (1 1/2 hrs) or D.C. (2 1/2 hrs) for a second opinion.

And on the barfing front - boy are the docs not being helpful on that. The thing is, that many babies with her type of brain damage have problems with their esophageal valves and they don't even leave the hospital without having surgery called "fundoplication" where they wrap part of the stomach around the esophagus (I think that's right, not positive) to make a valve. So the docs just keep talking about surgery. But she was fine when we brought her home and she's only gradually gotten bad. I have heard that many babies have a period of reflux at about 4-6 months and I'm not convinced that this is anything worse than good old fashioned reflux. Or very possibly food allergies - I have them, so could she. I'm getting really PO'ed about the whole thing. Bob seems about to cave on the surgery but I will NOT, at least until she's older. I mean heck, my sister threw up constantly until she was 6 months old! I think people are way too ready to jump on the surgery bandwagon. That surgery has its own complications. I don't understand why the doctors are so reluctant to try Neocate formula...yeah, I hear it's nasty and expensive but wouldn't it be better than surgery? I know it has done wonders for some of the babies on the reflux board. Well, I intend to continue to make a PITA of myself until all of our other options are exhausted.

Thanks to everyone who wished me a happy birthday yesterday! It was a pretty good day, wish today was. Bob talked me into staying home to help calm the fears of the babysitter we're attempting to hire, who we were training yesterday. That actually went pretty well, and we left Laurel with her while we went out to lunch. Then a friend came to watch Laurel while we went to dinner and a movie. Dinner was good, the movie turned out to be a bit of a disappointment b/c we were going to see "Chocolat" but they changed the time and we'd missed it. We saw "Billy Elliot" instead - pretty good, but as Bob said, it could use subtitles! (The accents are SO thick...) Then we came home and had cake and presents (2 CDs, a shirt and a tabletop fountain - the Natural Wonders store is going out of business, which is a serious bummer, but the fountain was 75% off which was VERY cool - I always wanted one but never could see spending $100 for one. And Laurel was more alert for our friend than she's been in days - played with several toys and petted the kitty! I'm sorry I missed it, but so pleased that she seems to be coming back out of the fog she's been in since we upped her phenobarb dose a couple of weeks ago. So all in all, a good day.

But today, not so good. Bob did the 8 AM feeding and said that when he got Laurel up she was shivering uncontrollably and felt cold (horrible flashbacks to her temperature control problems in the NICU). She got better, but threw up 2 out of 3 feedings (including one at the mall) and has been seizing a lot all day. The mall was really crowded and people kept smiling when they saw the baby...then their looks always changed when they saw the tubing...Bob got REALLY depressed between that and the throwing up. We were going to go on to a book sale but went home instead...oh, and I left out the call from the babysitter this morning that woke me up and left me wondering if this woman remembered ANYTHING we'd told her. Sigh, it was so nice to have a good day yesterday but wish I could get a streak going of more than one...

I JUST FIRED THE BABYSITTER!!!

I am feeling so up the creek without a paddle right now...but enough was enough. We went over and over how to do the tube feedings, she did a couple of them under our supervision, I typed up beautiful step-by-step notes...this ISN'T rocket science, a couple of people have babysat her who had no experience and they got through it just fine. But we have explained things to this woman 5-6 times now...and today (her first day alone with Laurel), she hooked up Laurel, didn't close the pump around the tubing or start the pump, and released the clamps...and 5 ounces of formula flowed into Laurel inside of a minute or two. All of which, of course, came back OUT of Laurel along with her medication. I just don't feel like I can trust this woman. And when I came home, she had set up to give Laurel some more formula, but hadn't warmed it. And she'd locked the cats out of the basement, where their food/water/litterbox is (and I know I told her that, too - but that's the thing, I tell her and tell her and SHE DOESN'T LISTEN!). She said, "Well, I know not to do that again." Yeah, but I don't want to find out how many other mistakes she can make! Thank goodness, at least Laurel is OK. But we're back to square one on childcare...sigh...

The good news on the daycare front is that our pediatrician already found someone else for us to interview. She's a Jan '01 mom who was looking for another baby to take care of to help her afford to be a SAHM. Although I had kind of liked the idea of Laurel's getting somebody's undivided attention, right now I think common sense and an ability to follow directions would rate higher for me. We're going to interview her at 2:30 today, I'll let you all know how it went. Meanwhile, I found several more stupid things that that idiot we had hired had done - I'm SURE we're better off without her. I suppose I should call and get her address though (it's not in the phone book) so I can return her cassette tape and underwear :-P .

Otherwise...well, we are just finishing up a 24-hour seizure count on Laurel (now THERE'S a depressing thing to do, count how many times your baby seizes) and have to conclude that so far, the new medicine hasn't had any effect on the number of seizures. We just went up to full dose yesterday, though, so I suppose we should give it a while longer. We're seeing her neurologist tomorrow and I will make sure he makes clear what the next steps are and how long we wait to take them (and if I'm not sufficiently happy with the answers, we'll get a second opinion).

She HAS been more alert and attentive for the last several days than she had for the previous couple of weeks. I don't know if that's the new medicine or her finally adjusting to the phenobarb dose, but it's so nice to see her looking at things and us and using her hands again.

We have been experimenting with cutting down her throwing up by feeding her a half-feeding every 2 hours instead of a full feeding every 4 hours (except at night). It seems like it might be helping - of course it's a pain having to feed her that often! I did talk our pediatrician into ordering some Neocate (a formula with no protein, just amino acids), hopefully it will be here soon so we can try that.

Between the seizures and the throwing up, it's been pretty hard for Bob and me not to be depressed. We have been really excited to see her having attentive periods again, but at the same time frustrated because they have come and gone before (and she's still not attentive a lot of the time even now) and we can't figure out for sure why.

Well, I guess I should get some work done...seeing as how I didn't get any done yesterday with the babysitter crisis!

Well, we might have another day care provider already...Bob and I just went out and met someone our pediatrician suggested. She's a Jan '01 mom who was looking for another baby to watch so she could afford to stay home with hers. We fed Laurel there and she seemed to be OK with it. She seemed WAY sharper than the one I fired yesterday. We're going to try starting with her on Tuesday...hope this works...

Please keep both our kitty Fuzz and Laurel in your thoughts today...

And Laurel...Laurel, I'm afraid, is getting worse. We met with her neurologist yesterday, and had told him that we thought her seizures on Monday were about the same as they had been a week ago (we had counted them but not added them up). Well, this morning I actually added them up and found out that we were WRONG. I guess what we didn't realize was that although there were the same number of clusters, there were more seizures in each cluster. Last week she had had 155 spasms in 18 hours...on Monday, there were 266. And last night, at the 4 AM feeding, she seized for almost 2 hours continuously, some of the spasms so hard that she almost launched herself off my lap. I just spoke to her neurologist...he wants us to count her spasms again (we just upped her medication yesterday) and call again tomorrow. And if I didn't have enough to be terrified of, he wants her tested for some incurable metabolic disorder that features both vomiting and seizures. (He DID say that her seizures don't really fit the pattern for this disorder, which I am completely kicking myself for not remembering the name of. But since Laurel does so many things atypically, he thought it was worth testing for anyway. Ack.)

And if you want to see my worst fear with respect to the infantile spasms...night before last, a new member of the Infantile Spasms group on Yahoo! e-mailed their introduction directly to me and a few other people (I have the "I'll check the messages on the website" option checked, so I don't normally get e-mail from this group unless it's meant for me specifically). My heart sank as I read the message about their beautiful 6-year old girl, for whom they have tried absolutely every therapy available and nothing has worked. Unfortunately, her story is a very common one for children diagnosed with infantile spasms, and this could easily be us in the future. They have a web page:

http://www.elliesbackporch.com/About%20Ellie.html

I've been crying off and on ever since I read this.

At my office but just got a call from Bob - Laurel is running a fever of 100.8 and seizing like crazy. On my way home!

She's doing better for now! The doc didn't seem to think the seizures and the fever were related - that the seizures were just part of the fact that we are seeing more seizures pretty much every day (I counted 324 spasms yesterday - and I was supposed to talk to her neurologist about this today, but he never returned my call). Anyway, he just had us give her some Tylenol and extra hydrocortisone (I guess her last endocrine test indicated she still had a deficiency). Her fever is down and she is sleeping now...no real idea why she ran one in the first place though...

If it's not one thing it's another! Couple of hours ago Fuzz started running around the kitchen and howling. 

Meanwhile, we think Laurel might have a tummy bug, although we're not sure. She throws up so much anyway, it's hard to tell. But she usually throws up towards the end or soon after her feeding, and she's doing weird stuff like throwing up 20 min. BEFORE the feeding. A tummy bug might explain why so many seizures, too, b/c we've noticed (and told the neurologist, and he said he'd heard this from other parents too) that she tends to often have seizures when she is feeling sick to her stomach. Right now I'm worried, though, b/c her temperature is measuring 100 under her armpit and we gave her Tylenol a couple of hours ago. Bob is insisting we wait awhile before taking another rectal temperature or calling the doc though...

Whimper...

Well, first off, I just got back from taking Fuzz to the vet AGAIN!! 

I wish I knew what was going on with Laurel. Her temperature keeps bouncing back and forth between about 99 - 101, and it doesn't seem to have much to do with whether or not she's had Tylenol recently. We're still debating on whether it's worth talking to the doc on call again (he's not one of the better ones anyway). But if she is still doing this tomorrow we'll definitely call her regular doc. She doesn't actually seem too miserable - threw up badly at the 4 AM feeding, but otherwise not lately (leading me to some hope that the Neocate, which came in on Friday, may actually be doing some good). I'm scared to say this for fear of tempting the fates, but her seizures seem somewhat better too.

Well, I should go comfort my yowling cat...

We did decide to call the doc about Laurel - we were worried we should be giving her some more hydrocortisone. Once again, her fever was 100.9 and it had been an hour and a half since the Tylenol. He did tell us to give her some hydrocortisone but otherwise was clueless - just told us to bring her in tomorrow if it's still going on.

Meanwhile, though, I'm pretty depressed b/c we decided it wouldn't be a good idea to take her out today, so we're missing the church skating party that I had been looking forward to for weeks. Bob and I used to skate a lot - we even have our own skates - but we haven't gone since I got PG. We figured this would be a great opportunity b/c we could take turns skating vs. hanging out in the "party room" with Laurel and church friends - we might have even left her briefly with someone so we could skate together for a bit. But it didn't seem like the responsible thing to do, given her fever...

And I was wrong about the seizures too - she's had over 100 spasms in the last 3 hours...wah...

Laurel is going back to the hospital tomorrow. I haven't been able to post all day (& don't have much time now) b/c I've been sitting around waiting for various docs to call back, but basically between the 700 spasms I counted yesterday and the inexplicable fever (at first we thought maybe a tummy bug b/c she was throwing up, but then she stopped doing that - she's actually throwing up less now than usual) the docs have decided to do more testing. So Laurel is going in in the morning. We have learned more about that metabolic disorder her neurologist wants to test her for and one scary thing about it is that one of the symptoms is an inexplicable fever. If that's what she has then she only has about 8 months to live (that's an average and babies never survive past the age of 2). The neuro did say that her symptoms are atypical, though, but he's sufficiently worried to order up the test. Along with a bunch of others. My poor baby is going to have her fourth spinal tap! (If you thought watching your kid get a shot was bad...)

Anyway, I have to go and get her next feeding set up but wanted to let you all know. I'll let you know when I know anything more...

Finally, time to post...

So...what the docs had to say was mostly pretty grim. They are saying that the majority of her spasms (although not all) are actually not seizures but uncontrollable movements. They are also saying that the fever (which she still has) is most likely due to the brain damage causing her to be unable to regulate her temperature properly. Since she didn't have either of these problems when she came home, this would indicate that her brain damage is getting worse - and yet, they are saying that she doesn't have infantile spasms (yet, anyway) and likely doesn't have a metabolic disease (although the definitive results on those tests won't be back for some time, there are indicators that they can check - levels of a certain protein, the condition of her eyes - which have all been normal). I have not gotten a good explanation for why they think she would be getting worse if she doesn't have a condition that would cause that. I'm also not convinced of their diagnosis of "not infantile spasms" b/c instead of the 24-hour EEG they were supposed to run, they did one for an hour and a half in the morning (when she often doesn't have any) and didn't catch any strong spasms (I TOLD them that would probably happen if they did it that way...grrrr...). So they had to fall back on the EEG from several weeks ago, at which point of course they made the same diagnosis they did several weeks ago. So we are starting to talk pretty seriously about a second opinion, although early research into our insurance plan is making it look like we might have to pay for it ourselves. We're also having a hard time deciding where to go - we have had recommendations for a doctor in Northern VA, one in Richmond, and for Children's Hospital in D.C. and Johns Hopkins in Baltimore, but none of those was by anyone who really knew a lot about pediatric neurology and who's tops in it.

On the throwing up front, the gastroenterologists talked to Bob (I wasn't there, unfortunately) and poked a bit at Laurel and decided she probably just has plain ol' reflux. They prescribed Gaviscon and rice cereal mixed in her formula. We haven't had that much of a chance to try the Gaviscon yet b/c of a mix-up at the pharmacy...the rice cereal (which is supposed to help by thickening the formula) might be helping a bit, not b/c it makes her feel like throwing up less but it seems like it's harder for her to actually get anything up. Both the gastroenterologists and Laurel's pediatrician think that the big problem is motility (it doesn't move through her stomach fast enough) but the drugs for that all lower the seizure threshold.

One small side benefit we got out of this trip was a prescription of selenium sulfide lotion for her cradle cap (I saw this was a thread the other day but didn't get a chance to post to it). We've only used it twice so far but her head looks AMAZINGLY better. Downside though is that she smells like sulfur!

Also found out that she is down to the 5th percentile weightwise (she started at 25th) :( . On the other hand, her head circumference is UP to the 5th percentile. Her head stopped growing for about a month or so and she had dropped from 25th percentile to right off the bottom of the charts, but it looks like she might be starting to catch up again...head circumference is driven by brain growth, so this is good news. Some children with brain injuries have brains that *never* grow.

One other good thing that came out of this most recent visit is that she is being taken off phenobarbital completely (unfortunately, that will take a month or so, it has to be done gradually). Turns out that it's interfering with the other seizure med she was put on, and it's clearly not helping with the seizures, so off she goes. And I have to say, since her dose was reduced Wednesday, she has been more alert than she has been in weeks. Squirming, grabbing hair, making eye contact - all things that she used to do but just hasn't been. We are starting to hope that maybe, just maybe (and at this point I'm terrified to even express a hope, we always seem to get smashed back down) the reason she has been doing so little lately has been the phenobarb (which was upped about the same time the spasms started getting bad). She's been pretty cranky today though. Of course, if I had her fever I would be too. Not totally sure I believe the docs on that either...

On the other hand, we're worried more b/c last night after she came home (naturally) and today she started having a new kind of spasm, looks like a startle reflex. Then she whimpers a little afterward. This is a perfect description of one type of infantile spasm. If she's still doing it on Monday we'll call the doc again...insert big sigh here...

The one piece of unmitigated good news I have is that Fuzz is recovering really well from her surgery. The vet removed her staples on Wednesday and couldn't have been more pleased with how she is doing. I took the collar off her last night, but she is STILL sulking behind our computer desk (where she's been since I had to put the collar on). Guess it'll be a while before she forgives us for this one.

Well, this has run on WAY too long, and I have to help clean the house - we're going to get a babysitter in tomorrow for our anniversary (we'll have been married 11 years). Bummer though - we were planning to go hiking, and all week long the weather report has looked good, but now they're calling for rain. Somehow it just figures - we were also supposed to get a cable modem today but turns out the wiring's not right in our cul-de-sac and who knows when it will be fixed - I just feel like we can hardly get a break!