Archive for April, 2010

…or not

Friday, April 30th, 2010

Maria did great on the new medication dose for a couple of days. Then Sunday when I was over I noticed she kept starting for no reason. Those of you who know her knows she’s kind of a jumpy girl anyhow but these were different. My suspicion was that she was having absence seizures, the kind where you just kind of fade out for a few seconds, and then starting when she suddenly came back.

Then Tuesday she apparently went totally ballistic. She had lots of seizures at school. They gave her the Clonazepam and it didn’t shut them down. At one point she aspirated really badly on her milk, which just made things even worse. Meanwhile Cathy was out of town on business and said she almost just jumped on a plane and came home.

She’s continued to have a bad week and is home from school today. Cathy’s back but of course she and Manolis are still worried. Maria’s also been acting like she has some kind of stomach bug. Since she’s spent so much time in the nurse’s office this week, where all those sick kids hang out, she might have gotten it from there.

Cathy’s been trying to get the school to video the seizures she’s having at school since what they describe is different than what we see, but apparently videotaping kids requires practically a presidential order so it’s been slow going. OK I understand protecting the kids, but if the freaking parent is providing the camera and asking for the video, shouldn’t that be enough?

I’m going over to take care of Maria later today and I think we’ll take it pretty easy.

The Right Dose?

Friday, April 23rd, 2010

Tuesday or so, we increased Maria’s meds again from 5 ml twice a day to 4 ml three times per day. Tuesday afternoon after school, hippotherapy, half a session of home PT, and 2 4ml doses of the medicine, Maria fell asleep. She slept from 4:30-9pm, drank some milk, took her 3rd dose of the white medicine, and ever since then, she’s been much better! She’s been cheerful, not sleepy, few or no seizures, no calls from school. She was a little crabby after school today, but so was I. It’s Friday. It was a long week.

It’s hard to believe we increased “the white medicine” by 250% in a mere 2 months!! Maybe we finally found the right dose?

Nanny Sue only worked about an hour this week. I’m a little worried about the summer. If Maria doesn’t go to summer school, then Nanny Sue is supposed to be here 10 hours/day for 3 days/week. These days she’s having trouble with 12 hrs/week. She assures me it will be fine, but I may need a back-up plan. In preparation, I think I’m going to go see The Back-up Plan (movie) this weekend….but I digress…

Now if only my crap would clear up. Today was a particularly rough one.

Abilities Expo LA

Sunday, April 18th, 2010

Last weekend I went to Los Angeles to attend the Abilities Expo, or as I call it, the weekend-long infomercial, which is fine if you’re in the mood for an infomercial, which I am. Well, not in the mood so much as in the market.

It was a bit overwhelming, but I got some good info. I saw the folks from Freedom Concepts with their bikes, it was good to see them — they were quite busy! There were at least 2 wheelchair van dealers–much of the place was filled with accessible vehicles. The 1st guy I talked to was real nice, and happens to be less than 5 miles from our house!! The other guy was nice too, but he’s in LA or San Diego, so there’s really no point to talk more to him when we have a dealer within spittin’ distance! I got good info from both of them, and from the talk on vans that I saw. So I’m narrowing down what we want. Just gotta figure out how we’re going to pay for it!

Another interesting talk I went to was about special needs trusts. When an audience member asked what was the biggest error made with special needs trusts, she said, “people set up a trust and then don’t fund it.” Guilty. I set up a trust 3 years ago and still haven’t changed all the beneficiaries on my accounts to the trust. I tried one day, but the forms didn’t make any sense to me, so I need to go pay my lawyer a visit this week so she can help me do it right. The woman, who was from Mass Mutual Financial Group, also said they’ll review your trust to make sure it’s in proper order, because that’s what they do–and they do it for free! (They just hope you like them and buy things from them.) I just may take her up on that, since my lawyer doesn’t specialize in special needs trusts, but she consulted with someone who does, so it’s probably in order, but better to be safe than sorry!

I got several brochures on wheelchairs, asked a few questions, but I’m at the point that I don’t even know what to ask, so at least we have the literature to go over with the physical therapist. Since it will probably take a year to get it purchased, we may as well start now. And I probably need to get the chair before the van, or at least know what chair we’re getting.

There wasn’t as much on aug comm devices as I thought, but I did get some literature and a name of someone to talk to in Phoenix. Then I talked to a guy, I think his name is RJ Reynolds, at least that’s the name of his company. He is very good with the kids, and explained a few things that totally made sense to me. The 1st thing he starts out with is a switch (button) connected to a vibrating mouse. They make the cause-effect connection fairly quickly with that, even those with emerging skills, like Maria. Then you go to music (push the button, get music), then you go to some software that he builds. I don’t know how much the software it, and it looks a bit crude, but I observed some fairly low functioning kids interact with it fairly quickly. He sets it up so if you don’t push the button for a certain amount of time, it calls your name “Hey Maria”, and that seemed to work to some degree. He wasn’t selling much there, but I did manage to buy a switch and the vibrating mouse he was using (the only one he had, but it was near the end of the Expo and he said I could buy it), and got a CD with his catalog so I’ll look into that. so perhaps we can work on communication afterall!

The other thing I bought was a small blanket-like thing filled with something heavy, like beans, and herbs. They said the herbs can clear your lungs, so it might help Maria next fall since she gets so congested in the fall/winter, and the weight might help her organize–I’ve talked with her OT or PT about that before. It wasn’t too expensive, so if it doesn’t work, at least the house will smell nice and I’m not out that much. They told me one older woman bought a bunch of them (the slippers actually, but the herbs are almost the same in the blanket and the slippers) for all her elderly friends who tend to get pneumonia, and it seems to be working!

The one fun thing I did was go to a concert at the Getty Museum –beautiful place across from the Santa Monica Pier. One of my friends is in LA and she came to get me. the band is Sones de Mexico. Each of them plays at least 10 instruments it seems. The entire stage was full of stringed instruments and drums and even a donkey jawbone–no kidding–they played it for at least 2 songs! We were in the 3rd row. It was fun! Maria would have loved it! So i got her their newly released CD which is for kids.

So, now we just have to get those pesky seizures under control…..She didn’t have any yesterday, so perhaps we’re on the downswing (upswing?). I think I’m going to give her teachers a video recorder so they can tape her seizures. Thursday they said she had one where she was jerking a little bit–which is new. Friday they said she had about 10 – 15, mostly short ones. I’d really like to see what they’re seeing and try to decide if we can do anything about it….

Of seizures and cycling

Friday, April 16th, 2010

The bad news is Maria continues to have many seizures even with increased medication. The higher dosage is making her sleepy , which is normal at the beginning but should wear off in a few days, but doesn’t seem to be doing much to control the seizures. She’s been sent home from school early twice this week and been given her emergency medicine at least twice.

The good news is she is doing GREAT on the bike. I realized that one problem she has pedaling is where she needs to shift from pushing with one foot to the other. There is a certain point where she doesn’t seem to have the strength or coordination to push it past and she needs a little momentum but usually doesn’t have the speed needed. At first I would push her very slowly and she was able to pedal some and pull away from my hand, then get stuck and I’d catch up and push her past it. However I found a better idea is to put her on a slight downhill path. It’s not enough of a slope for the bike to go on its own but its enough to give her a little help when she hits the stuck point.

She’s been doing better and better but today she was incredible. She pedaled an entire block by herself. Then I turned her around, pushed her back to the start, and she did it again! The first time she got stuck three times and I had to nudge her about an inch to get her going again but the second time she got stuck only once. She was pedaling at a slow walking speed, about 2 mph, but had a steady rhythm. And, I might add, this was when she was doped up on clonazepam.

Maria’s also started to use a button when she eats which allows her to ask for more. At first I’d move the spoon to trick her into pushing it as she reached out, but the last two times I’ve been there she has been using the button pretty deliberately. I think Cathy said Sue has seen the same thing. Very exciting!

Uncle Andy’s update

Thursday, April 1st, 2010

I looked up some things in Cathy’s post from last night.

Oculomotor apraxia (or ocular motor apraxia) isn’t a visual processing disorder. Apraxia is a condition where the person has difficulty making deliberate movements. Maria wants to move her eyes but the signals don’t always get from her brain to her eye muscles. Oculomotor apraxia affects only horizontal movements for some reason. Although that might be part of her problem, she certainly also has CVI.

One of her past speech therapists thought Maria had oralmotor apraxia, which is the same thing but would have to do with mouth movements and swallowing.

The test he was talking about is visual evoked response (VER) or visual evoked potential (VEP). It’s basically a special type of EEG during which they show Maria things like flashing lights or a black and white checkerboard which changes contrast. They measure how her brain responds to these fairly simple stimuli and can determine how much of the information is being processed. In fact Maria has gotten evoked response tests before – the BAER test for her hearing. There are several types of VEPs to test different things like color recognition or motion tracking.

My response to the convergence exercise is an exaggerated heavy sigh. Don’t get me wrong – I’m sure it will help. We’ll add it to the 20,000 other things we are supposed to do with her every day and don’t have time for.

Eye Doc Appt

Thursday, April 1st, 2010

We went to the eye doctor this week. I suppose it was an ok appointment. He’s still worried about her wandering eyes and if they get worse, then he’ll have to do surgery (he’s been talking about this for a year or so). Good news is he said he could do the surgery at the same time as she has her hip surgery so she wouldn’t have to be put out twice. In addition to the patching, he’s recommending “eye push ups” as he cleverly called them, where we bring objects slowly in toward her face so her eyes have to focus on the object, strengthening the muscles. Does that make sense? She often brings an item so close that it touches her face, so she must know what’s best for herself!

Funny thing is, the second he came into the room and walked up to her, she started “talking” to him — that thing she does where she moves her mouth like she’s talking (although no words come out). It was like she was trying to explain to him what was going on. It was so damn cute!

I think he said her eyes weren’t focused about 1/3 to 1/2 of the time that he observed her, if it goes to more than 50% of the time, that’s when he recommends surgery. Considering the fact that she went to school all day, it was almost 5pm, and she’s been having seizures for the past month — I was somewhat pleased at how pleased he was with her. He, like many of her other docs, said he was amazed at how well she’s doing and he never would have predicted it. What the hell did all these docs think of her and thank goodness they either didn’t say it outloud or I had the sense to block them out.

Now for the technical crap that I didn’t understand and have been too traumatized (or lazy?) to look it up: He thinks her problem might be more oculomotor apraxia (processing?) than cortical visual impairment — although I thought CVI was a processing thing??? He said one thing we could do is hook her up to electrodes and show her visually stimulating objects and record when her brain stops registering. That would give us a number or level of CVI that she has (I think — or maybe the percentage CVI and the percentage apraxia?). He said it probably wouldn’t change what we were doing, but it might be interesting to know. Hmmmm. Uncle Andy is going to have to look into that a bit more. On his notes, he wrote “consider VER (VEP)”; as I recall, that’s what he called the electrode testing thing. Stay tuned for Andy’s update (:-). Other than that, he just suggested we keep patching daily, continue with the glasses, and do some convergence exercises. All-in-all, I guess not such a bad appt.

He had a student doctor in the room (whatever the proper terminology is), and he was the most engaged student doc I’ve met (and we often meet them). Very impressive!! The other impressive thing was that although he was running 45 minutes late and it was the end of the day, he still stayed in the room and answered all my questions and didn’t act like I was putting him out for taking time. I really appreciate that and told him so! He also said it would be a good idea to get glasses with transition lenses (change to sunglasses in the sun). I forgot with her new glasses. I’m not so crazy about her new glasses, so I’ll probably get another pair. Her disability insurance pays for 1 pair per year, but only at Nationwide Vision or something like that, so I’ll go check them out and if they have any decent ones we’ll do that, otherwise, we’ll get the cute ones at the eye doc.

So yesterday pretty much sucked — I worked on a file for work all morning and my computer locked up and the file was lost (with the help of the BLM Help Desk, thank you very much). It was a project I didn’t really have time to do but I was doing it as a favor to someone (who I’ve never met — that’s the kind of public servant I am…). Then my toilet broke. The pond pump broke. My new phone broke. No kidding — this is all on Tuesday within about a 3-hour span. While I was on the phone with T-Mobile to see what they were going to do about my phone, she said she’d send me a battery and see if that worked. I told her I needed it Fed Exed to me because I have a 5-year old daughter who has seizures and I need to be able to have the school get in touch at a moment’s notice, and no shit, the second I hung up the phone, the phone rang and it was the nurse calling to tell me Maria had about 6 seizures so she was giving her a Clonazapam and could I come get her. So, I picked her up, she had a wicked seizure in the car as I pulled into the garage, then I complained mightily about how everything sucks for 2 1/2 hours, and then worked until late to finish the paper I’d begun that morning, getting me no closer to catching up to the huge pile of work that’s growing.

But today was a better day. Maria only had a few small seizures and was in a good mood. Manolis fixed the toilet and tried to fix the pond pump (but the cord is too short so he has to go back and get the one with the other cord), and I’m using my old cell phone, so I don’t have to be irritated by the stupid touch screen of the T-Mobile Tap — which I highly DO NOT recommend because it’s a piece of crap. And tomorrow, on April Fool’s Day, I get to go see if a physical therapist can help my little pelvic pain problem. oh boy.