Archive for July, 2007

Post-hospital update

Tuesday, July 31st, 2007

For the first day or so she was on Trileptal, Maria had no gagging incidents. Since then she has had a few. They are less frequent than before but that “her heart could stop” thing makes them a bit more dramatic.

It’s hard to tell how badly the side effects are hitting Maria. She might be sleeping a bit more, which could actually be a good thing since so much development occurs during sleep. She definitely doesn’t seem to be seeing well most of the time, though she seems to be seeing better today than she has recently. It would be so much easier if we could just ask her how she’s feeling.

Yesterday she didn’t do that well with the PT, but she was very interactive with the music therapist this morning. Maria waved at her, shook her hand, and was trying to grab at the instruments.

Maria has a new OT starting in two weeks and of course she starts school the 13th. She’s losing her feeding therapist because she doesn’t have any afternoon appointments available. With the recent bad swallow study and the upcoming Vitastim therapy, we probably need to find another one.

Out of the hospital

Thursday, July 26th, 2007

Maria got out this afternoon and is happy to be home. She was getting quite cranky in the hospital but they wanted to wait on the results of the biopsies before releasing her. They all looked fine. In particular, the lipid test came back normal which indicates she has probably not been aspirating.

A couple of notes about her seizures. Some of the facts and statistics come from which is a pretty decent site. All the articles are edited by MDs so are likely to be accurate, unlike some of the stuff you find on the Internet.

Maria’s diagnosis is “symptomatic epilepsy”. As I suspected, “epilepsy” is a generic term for anyone who has had two or more seizures that weren’t provoked by events like low blood sugar or fever. It isn’t so much a condition by itself but rather a description of symptoms. Often children outgrow seizures, however the doctor thought it was unlikely in Maria’s case. We aren’t going to use “the e-word” since there is so much myth and controversy around it and it isn’t any more accurate than just saying “seizures”. I mention it here only for Google’s benefit since part of the reason for this blog is as an information resource for other people taking care of special needs kids.

Cathy mentioned SUDEP in her email and I looked it up. That means Sudden Unexplained Death in EPilepsy and refers to the fact that sometimes people with seizures die for no reason – that whole “her heart could stop” thing I mentioned before. It’s very rare (roughly 1 in 3,000 per year for all people with epilepsy) and even rarer in children. It’s kind of like SIDS in that the doctors don’t really understand what happens. Basically, it’s not something we should lose sleep over, though I think I’ll reactivate my CPR certification.

Children with seizures can sometimes be helped with a ketogenic diet, a diet high in fat and low in carbohydrates. It’s a complicated diet that really needs to be administered in consultation with a dietician. Cathy remembers them mentioning a dietician but it got lost in the noise.

At this point we are still a little confused about the seizures. In particular, we aren’t sure if they were saying the gagging thing was seizure related, whether she was having the staring seizures the neurologist suspected, or both.

Cathy had been thinking about changing neurologists after the last “let’s do a tracheotomy” visit, but she’s now thinking this would be a bad time to do so. She’ll take Maria back to the old neurologist for a followup and I’ll be sure to go along. That should be within the next few weeks after the drug has had time to settle into her system.

A couple of important side effects of the Trileptal are low blood sodium levels and an acne-like rash. The good news is I’ve found several cases of people whose kids made large jumps in communication and development while taking it. It sort of clears the cobwebs and allows them to learn more effectively. There were also mentions that kids became more verbal while taking it, which we’ve definitely seen in Maria.

The audiologist sent us a six-page report of Maria’s hearing condition, how it relates to other hearing loss, how the cochlear implant works, why we should consider it, and so on. It was a very nice document that she sent at 1 am (!). We are less resistant to the idea than before, particularly since it would leave one ear untouched so that Maria still has the opportunity to gain natural hearing in that ear. They have also apparently made substantial technological advances in the two years since we last considered it, so cochlear implants have a much higher success rate in auditory neuropathy than in the past. However, as Cathy puts it, we hate to put another hole in Maria’s head.

We’ve also wondered how all of this (seizures, drugs, cochlear implant) will affect school.

Most of the drama is over now and we are just figuring out how to integrate this fun new problem – oops I mean “opportunity” – into our lives.

Hospital: Day 3 – Bad News

Wednesday, July 25th, 2007

This post may be a little disjointed because I’m trying to piece together information from emails Cathy sent me. She doesn’t feel like talking right now.

Maria has definitely had multiple seizures in the last few days. They are partial seizures, also known as local or focal seizures, meaning they affect only parts of the brain rather than the entire brain at once. They usually start in her left hemisphere usually, but also sometimes start on the right and sometimes both. The doctor had never seen this seizure pattern before (because Maria always has to present symptoms doctors have never seen before). The biggest concern is that the seizures are affecting her autonomic system, meaning her breathing and heart rate, so there’s a very small possibility that she could have a seizure, her heart could stop, and she’d die. Now there’s a happy thought.

How do they treat this? Well, they started by giving her Valium…through her rectum. I actually looked that up because I wanted to be sure I wasn’t just reading Cathy’s email wrong. Yup, that’s one thing they do to combat seizures. Cathy said it really turned Maria into a zombie. However, that’s not the long term treatment.

For that, she is taking Trileptal. Side effects seem to be the usual culprits (fatigue, headache, nausea) that you see in just about any prescription medicine.

They did her medical tests this afternoon. Her stomach and lungs all looked fine, no abnormalities or sign of damage. There might be some minor reflux but nothing serious. He took lots of biopsies just to be sure. Her BAER looked better than the last and the brain activity in response to sound is improving steadily.

The audiologist said to stop using the hearing aids, which is good because we haven’t used them in months. However, she’s pushing the cochlear implant again. That’s kind of like a surgically implanted hearing aid. The biggest problem is that they have to destroy the cochlea, which would destroy any natural hearing Maria has. Plus, of course, it’s surgery. She said that Cathy should decide within a month or so because the window of opportunity for best results is closing.

Maria is probably getting out tomorrow.

Hospital: Day 2

Tuesday, July 24th, 2007

I took over for Cathy today so she could get a break. Maria has to be monitored constantly by a family member and if Cathy wants to leave for even a minute, she has to call the nurse in to watch Maria while she’s gone.

Maria is not just constantly monitored on in EEG, they also measure her heart, blood oxygen, and have her on video. Every time there is an “incident”, not just the gagging but anything that seems seizure-like, we click a button. That puts a “look here” mark on the readout and alerts the nurse to look at the monitor and make sure everything is OK.

Since Maria didn’t have any strong incidents yesterday, they decided to keep her another day.

They did a chest xray to see if she has any gunk in her lungs; we haven’t gotten the results on that yet. I talked to the on-call GI and he doesn’t think Maria is refluxing (we agree) but still thinks it’s a good idea to do an EGD and a pulmonoscopy (stick a camera down her throat to look at her stomach and lungs – we agree with that, too). We are trying to coordinate that with the BAER so that she has to be anesthetized only once for all three procedures.

She did her gagging thing a couple of times but only minor ones. Then she had a dramatic one, blue lips and all, which is “good” since it gives them a full set of readings to look at during the incident.

Honestly, I suspect she’s not getting out tomorrow. Sue will take the day tomorrow and I’ll probably take Thursday if Maria’s still there.

Hospital: Day 1

Monday, July 23rd, 2007

Maria went into the PEMU this morning for what we hold will be a short stay. They wired her up to an EEG and Cathy has a button she’s supposed to press any time Maria does something seizure-like. That includes her gagging thing, staring off into space, and this head movement the nurse noticed. Those of you who know Maria know she often turns her head to the side. To us this is clearly not a seizure but more of a cerebral-palsy-like “I can’t control my movements” thing. However, the point to pressing the button is it just makes a mark on the EEG so the neurologist can correlate brain activity to outside stimuli and see what is going on.

They are, of course, all concerned about her gagging. She hasn’t been doing it mostly because she’s been asleep since she got there. However, the pulmonologist is concerned about Maria’s “history of aspiration”. Um, history? Twice over a three year period qualifies as a “history of aspiration”? He’s talking about putting the NG tube back in and Cathy’s pretty much thinking, “Um, no.” Maria is two years older than the last time she had it. She wouldn’t tolerate it going in and she sure as heck wouldn’t keep it in. Not to mention the last time she had it she was only getting milk not food. We aren’t saying we wouldn’t do it, but they have to convince us it would be the right move.

They all have their theories about the gagging: reflux, aspiration, seizures. Cathy keeps explaining over and over that the pattern doesn’t fit these things. There is no pattern around eating, positioning, time of day, activity, fatigue, or anything else. They don’t listen and treat her like some mother in denial. It’s the whole “I’ve known her for 30 seconds but I’m more qualified to judge her behavior than people who have known her for three years because I’M A DOCTOR (fanfare plays).”

They are talking about putting Maria on Prilosec or Prevacid, which would at least be more reasonable than a tube. They also mentioned some test that can tell if she’s been getting food into her lungs. We have no idea if she’s getting out tomorrow of if they are going to keep her for a while. I’ll keep you posted.

Back to her old self

Saturday, July 21st, 2007

Maria isn’t sleeping the days away anymore. I noticed that her calves are freakishly long all of a sudden so I guess part of this really was growth spurt.

Her gagging thing seems less frequent…kind of. It comes in waves where she does it a lot, but some days she doesn’t do it much or at all. Often she just opens her mouth like it’s just a habit, but doesn’t start gagging or anything. We are still baffled.

She got her bath chair this week and we are going to see a demo of her stroller on August 1st. If Cathy likes it, they still have to order one and who knows how long that takes.

She starts school in just three weeks! We are still working to move all her therapy appointments to the afternoons. We were afraid we’d lose her music therapist since she is completely booked up, but she is going to try coming before school. PT is already in the afternoon and speech has found an afternoon slot. We lost vision, vision/hearing and OT for other reasons and I think OT is the only one we are going to try to replace. Who’s left? Feeding I guess and I’m not sure what’s going on with that.

We took her swimming in a public pool designed for special needs kids and adults. She seemed to like it and it wasn’t very crowded. Apparently it’s really dead on the weekends. We’d like to get her out swimming more but it’s hard to squeeze it into her busy schedule.

She goes into the hospital Monday morning for her seizure monitoring. We will also get a pulmonology consult for the heck of it and will try to get a BAER done the day she checks out as long as we are in the neighborhood.

Sugar-Free Lion’s Breath

Sunday, July 15th, 2007

I took Maria to the chiropractor Saturday. She was doing her choking thing so much that I almost went to get him when he was with his other patients. She was doing it when he came in once, and he said it was lion’s breath; that she was trying to get her cervical spine aligned or in place or something. When I asked for advice, he said to change her position, just like I did. He also suggested that perhaps her 7 days of almost nonstop sleeping is just her trying to re-set her neural pathways–now wouldn’t it be nice if that’s all it was?! She wouldn’t eat breakfast before we went to the doc’s and fell asleep on the way home, slept all day, and only barely ate a few blueberries and banana with a bite or two of zucchini. That and a couple bottles of milk was about all she had all day.

When I got home, I looked up lion’s breath, thinking I was going to finally understand why she’s been doing, and all I could find was that it has to do with yoga, where you open your mouth wide, stick out your tongue, and suck air in. Oh well, it couldn’t possibly be that easy, could it…

I managed to get some urine pretty well yesterday, but today was a different story… I don’t know which way to put on the baggy thing to catch the urine and I’m pretty sure I did it wrong today. So I finally got her to drink, but when she peed, most of it didn’t get into the baggy. I think I brought them about 10 drops. Fortunately it was enough to do the sugar test. Good news–both samples were ok, normal, negative, whatever it’s called. So the doc left a message and said I didn’t have anything to worry about (ha). At least I don’t have to freak about Maria having diabetes…

Maria did pretty well today. She stayed awake until 5pm, about 1 minute after Joe & Anne left (they brought her 4 wonderful outfits, for her birthday, that she can wear to school). She ate an ok breakfast, a really good lunch, and slept through dinner. She didn’t do her choking thing much at all today–maybe once or twice, if that. It’s just over a week until we go to the hospital; I’m actually kind of looking forward to it, in a weird way. We’re finally past the halfway mark for Manolis, only 2.5 months to go!

Our latest little scare

Friday, July 13th, 2007

Boy it just never ends.

As of Thursday morning, Maria had been sleeping almost continuously since we got back from Albuquerque. She was easily rousable, cheerful, and ate well when she was awake so we weren’t sure how worried to be. Then Cathy weighed her and she was down another pound since May (27 lbs 5 oz with just a diaper). Cathy called the pediatrician.

To our surprise, they got us in the same day. The doctor wasn’t too concerned but figured she’d do some blood work just in case. Mostly she was looking for infection.

Good news: no infection.

Less good news: elevated glucose level, low bicarbonate level, and the weight loss might point to early stages of diabetes.

We had to try and get a urine sample from Maria because the doctor wanted to check for sugar in her urine. Sue had the idea of taping a little baggie to her but Maria wouldn’t produce on demand. We finally had to take her down today to get catheterized.

There was a little bit of sugar in her urine but little enough that the doctor said, “Maria doesn’t have diabetes. Right now.” Just like that – a little hesitation then she added, “right now”. She wants a couple more urine samples over the weekend and she gave us these sophisticated collection devices which are basically little baggies we tape to her.

Maria has cousins with diabetes and her daddy had elevated blood glucose for a while so I suspect this is something the doctor will want to keep an eye on. Because it’s not like we have enough to worry about.

Albuquerque Vacation

Monday, July 9th, 2007

Maria generally seemed to do well on her little vacation. She ate really well and slept more that usual. She even slept on the plane both going and coming, and she won’t usually sleep when traveling. Since we got back she has slept a lot and has had a little fever on and off so we still aren’t sure if this is a growth spurt or a bug or both. I also felt kind of lousy Sunday morning so maybe there is something.

She had her much-delayed birthday party on her vacation…sort of. With one thing and another happening and her being so out of sorts, it kept getting put off. We finally had it on Saturday and she just didn’t care. I don’t think she even ate any of her cupcake.

She saw the eye doctor today and he’s pretty happy. He mentioned that her field of vision was stronger on the left. We haven’t noticed that but he also said it could just how she was seeing at the moment. He said that CVI is like looking through Swiss cheese, an analogy I’ve heard before. Certain areas of your vision are clear and others aren’t, with no real rhyme or reason.

Her epileptic monitoring has been scheduled for the end of the month. It turns out it’s not just one day but one to four days. They meet each day and decide whether to keep her another day or not. Knowing Maria, she’ll be there for a week.

I uploaded some new pictures although none of the party since I am, as usual, about two months behind.

Only 3 and Already Dieting…

Sunday, July 1st, 2007

I weighed Maria this morning, she’s 28.0 lbs. Granted this is on my scale, which she’s never been weighed on before. A couple weeks ago when we went to the neurologist she was 29 lbs and a month or so ago at the pediatrician’s she was almost 30 lb, I think. Since her milk is so much thicker now, she’s drinking a lot less. She hasn’t been all that interested in food, and she’s been falling asleep before dinner quite a bit lately. Thursday, after a feeding therapy, a short swim, and a session with the chiropractor, we got home, I put her on the rug, immediately went to get 2 cubes of food out of the freezer, nuked them for 30 seconds, brought the food to her, and she was asleep. Today it was almost the same, but I made the mistake of heating her food in the hot pot, which takes a few minutes.

We’re off to NM in a few days, I hope she’s ok with the trip. She’s still a bit out of sorts, because of the kitchen, I assume. Shockingly, the contractor isn’t done with the cabinets. The drawers were too big or some nonsense, so they had to build new ones. He didn’t realize the knobs were in the garage, so they haven’t been put on. The range is still in the garage (maybe it doesn’t get put in until some other tiime?) The tile hasn’t been fixed yet. The counter top isn’t being installed until Friday. So another couple days without a range or sink and with a microwave on the floor. I do hope they actually finish next Friday…

Even though Maria’s not been herself, she sure has been affectionate! Full of hugs and kisses. Just 3 more months and Manolis can experience some of that too…