Archive for September, 2007

Making progress

Tuesday, September 25th, 2007

Maria’s episodes do seem to be getting less frequent and less severe, so maybe the Depakene is working (it is “Depakene” not “Depakane” like I said below, although since were giving her the generic it’s not really even Depakene). Of course, the Trileptal seemed to work at first then it didn’t anymore, so we’ll wait and see. She continues ramping up to the full dose over another three weeks.

There have been a few side effects, but she seems to adjust to them over a few days. The most obvious is that she’s been sleepier, though not as bad as the Phenobarbital days. I also think it upsets her stomach and has been messing with her vision a bit.

We are supposed to be giving it to her 3 times a day spaced 8 hours apart to keep the levels consistent. Realistically we aren’t going to wake her in the middle of the night for medicine, so she gets it when she wakes up, when she goes to sleep, and then halfway in between.

She seems to have been making some progress over the last few weeks. Her weight was up to nearly 30 lbs at the doctor last week. She’s drinking from the straw more and on some days she doesn’t take the bottle at all. She doesn’t dribble her milk very often and doesn’t drool unless she’s distracted by something else. She’s more interested in feeding herself. She’s gotten pretty good at moving food around with her tongue to chew it. She’s been reaching up to be picked up a lot lately and seems to recognize people more quickly. When we put her in her crib, she grabs the sheet and pulls it up to her chin. She helps dress and undress herself. There have just been all kinds of little things like that recently. Of course, they all should be qualified by “when she’s in the mood”.

Prediction

Sunday, September 23rd, 2007

In 11 days Manolis will be home from Crete. Maria started her “episodes” 2 weeks before he left. My prediction is that within a month or so after he returns (probably sooner), she’ll stop. Everyone who reads this needs to believe it too to help it come true. We usually talk to Manolis right around the time Maria goes to bed. The past several times he’s been on the phone, she’s had several episodes. She only had 5 or 6 all day, we talked to him this evening for about 10 minutes and she had 3 or 4.

We usually try to go out once a day, but it’s been difficult the past several months because of all her seizures. I do hope they stop because it’s good for her (and me) to get out. My favorite thing to do was go to Barnes & Noble, have a cup of coffee and read books or magazines. Not such a good place to go with her when she’s loudly gasping for air.

We got a letter from Shriner’s–Maria was accepted for orthopedic treatment at no cost to us. Not sure exactly what they do or what to expect, but I’ve heard good things. Our appointment is in Salt Lake City in December. They come to Phoenix quarterly, but we’d have to wait until March, so I think we’ll keep the SLC appointment for the initial assessment, then see them in Phoenix after that.

Tomorrow I’m off to California for a few days for work; Andy and Sue have Maria duty, then Sue goes to Hawaii for her daughter’s wedding for a week. I’ve been really busy at work, so it’s going to be a challenge to figure out the child care thing. I called the “back-up nanny”, but haven’t heard back from her yet.

New drug and new therapy

Friday, September 14th, 2007

Maria’s over her latest sleeping incident. Sunday she started eating and drinking better and by Monday she was back to normal. I guess we need to accept that this is a Maria thing. She has done this several times. For 7-10 days she sleeps continuously, doesn’t eat or drink much, and runs a mild fever of about 100. Then she gets over it. Our hope is that it’s some kind of growth spurt, either body or brain. When I picked her up this morning, my immediate thought was “Geez, she’s HUGE”. According to Cathy’s bathroom scale, Maria’s over 30 pounds when she was around 27 a couple of weeks ago.

She started Depakane this week (Depakote is the pill and Depakane is the liquid). She will still take the Trileptal in addition; we aren’t sure if the plan is to wean her off the Trileptal once the Depakane is at full strength in a few weeks. By then we hope to be with a new neurologist so we’ll see what he has to say. Since she’s having 40-70 seizures a day, we really hope the Depakane helps. We are of course concerned about the potential for liver damage, but the chance of it is very low. Other than the usual side effects of just about any drug (sleepiness, nausea, headaches) we need to be sure to keep her out of the sun since Depakane makes the skin very sensitive to sunburn. Oh, and since it causes terrible birth defects, we need to be sure Maria doesn’t get pregnant 🙂

Cathy talked to the new feeding therapist about the VitalStim, the electrical stimulation of her throat muscles that they want to do in November. It is done four days a week for five weeks and is, of course, in the morning when school is. So either Maria misses school for five weeks or Cathy gets her over there early enough that she can drop her off at school afterward. They may be able to find a different therapist who gives the treatment in the afternoons. Regardless, it’s likely we’ll have to cancel all of her other therapies during this time. It’s going to be a mess, but the success rate is in the 90-100% range which is encouraging.

A representative from the DDD was cautioning Cathy that Maria will lose benefits when she turns six unless she has one of epilepsy, cerebral palsy, cognitive disability, or autism. It looks like we “win” because Maria has three of the four (I don’t think we mentioned that the pediatrician has started writing “cerebral palsy” on her office notes so I guess it’s official now).

Mommy’s Visit to School

Tuesday, September 11th, 2007

I went to Maria’s class today. Met a couple therapists. Finally met someone in the hearing impaired arena that I like–nice, helpful, happy, positive. She’s going to try and get me some info on auditory neuropathy and cochlear implants. I still can’t quite make up my mind… I only gave the teacher and aide a couple suggestions. They really do a good job trying to involve Maria. They have a big button (called a Big Mack) that you can record your voice on, so when they go around the circle and say what color the teacher has or what day of the week or how they’re feeling, the aide records Maria’s answer, then all Maria has to do is hit the button, so it’s how she participates. She had

    lots

of episodes today. Don’t know if it was because I was there or what.

It’s a wonderful class, but holey moley just about everything they do is so far beyond her abilities; if I dwell on it for even a moment, it’s quite daunting at best. It’s good for her to be there, especially being this young, before kids realize how different she is and before they mock. It’s good for her to be around other kids and toys and activities and positive adults. But what will it be like when she has homework and tests?

The other thing I dealt with today is the neurologist. She’s shocked that Maria’s still having seizures and not-seizures-that-look-like-the-seizures. She agrees that the Trileptal doesn’t appear to be working. The 4 options we discussed were: 1) increasing the dose of Trileptal; 2) trying Tegretal (sp?); 3) trying Depakote; 4) some combination. After changing her mind several times, she opted for the Depakote, the medicine that will make Maria sleepy, could harm her liver, and could actually destroy her liver, from which she could die. Why is it that every time I talk to her, she tells me some other way Maria could be no more. It’s maddening!! I suppose I could try the new medicine for a while. We have an appt with her the 18th, and with the new neurologist Oct 8. I sure hope we like him. I’m not sure how much more of her I can take. I know she means well, but …

Pediatrician visit

Friday, September 7th, 2007

Maria is still sleeping, feverish, not eating, and not drinking and Cathy took her to the pediatrician yesterday. The doctor wasn’t too worried since Maria is cheerful. She says it’s just something to wait out, which at least gives us some peace of mind. If Maria is well enough for school on Monday, it will have been a week and a half since she was last there so it will be like it’s all new. If not, well, then the pediatrician might get another call.

They also talked more about Maria’s incidents. We all agree that it is 100% certain these incidents are seizures. And we all agree that it is 100% certain that these are not seizures; there is plenty of evidence on both sides. Maria sees the old neurologist in a couple of weeks, then the new one a couple of weeks after that. It’s hard to tell how many incidents she’s having lately since she’s sleeping all the time.

New Woo-woo

Thursday, September 6th, 2007

Not actually sure how to spell woo-woo… In plain language, Maria and I went to see the new healer today. She was quite awesome. We went to her house, she’d just, 13 hours prior, gotten in from a week in Hawaii, but she seemed fresh and happy to see us. Maria was very stressed when we got there–jerky, mouth pursed, stiff legs; but Julia did something (can’t recall what) and Maria just relaxed, then really took a liking to her.

Julia’s been around the world, taking classes on many types of healing; has a PhD in craniosacral whatever, is currently taking a series of courses in shamanism. She does similar things as the chiropractor, but she talks more (which I like), and she’s a bit more spastic (which I also like). Her hands move very fast at times, and at other times they were still for several minutes. She did the “tummy sandwich” that Barb (physical therapist) does (one hand on the pubic bone, the other hand below on her lower back, like the hands are bread and the body is the meat). One time she was spastically scratching Maria’s head with her fingertips, and almost had Maria laughing. It was very cute! She showed me what to do when Maria has a fever, something else to do to calm her. I actually felt the pulses that she was talking about. She thinks if I am still and clear my mind that I might be able to communicate telepathically with Maria. Sounds interesting, yet I have a problem trying to still my mind…

She felt something around Maria’s left hip, so she told me we need to work on range of motion for her legs/hip joints (I told her about the other mom whose daughter had the hip joint surgery because of her lack of standing, walking). She also said the left side of her brain was much more dense and hot than the right side. Good? bad? Just is. She doesn’t think there are any parts of Maria’s brain that are missing (thank you very much). She also poo poo-ed the demonic nonsense (the faith healer thinks the seizures are demonic–remember the dark ages??). Julia works with an angel reader, and when she told her she had to go meet a 3-yr old with hydrocephalus, the woman said she saw a lot of white lights, which means Maria is surrounded by angels. I told her about Maria “reading the messages in the air from aliens or spirits”, and she said she thinks Maria can see the angels. She noticed when Maria looking around when we got to her house; her interpretation is that Maria was looking at the angels in the room.

I know by now that probably my dad, certainly my step-mom, and possibly many others reading this are rolling their eyes so hard they have a headache, but look at it this way–this hurts no-one; it makes me feel better; it makes Maria feel better; it’s good, positive, and loving energy; so what’s the harm? Remember back when Maria was born and the neurosurgeon saw a mass on her MRI, didn’t think it was cancer, probably not a tumor, never seen it before. I put Maria’s name on the Distant Healing Network website so Reiki masters around the country or possibly the world sent her healing energy, and, as I predicted, in December 2004, the mass had disappeared. I think there’s something to some of the woo-woo.

I told Julia we don’t allow negativity around us–got rid of her original GI doc who insisted that we put a G-tube in Maria’s belly, even tho’ she was eating fine, and wasn’t aspirating. Getting rid of her original neurologist (I hope), who tells me every time we see her that she’s convinced Maria had a stroke in the womb and feels she has missing and/or deformed brain tissue. Haven’t been back to the neuro-otologist, who when Maria was 6 months old, practically demanded that she get a cochlear implant within a couple of months–this before we’d even sat down, as I recall, and we’ve been told since that would be a mistake. Don’t plan to go back to the faith healer who blames Maria’s demonic spirits on sins of her past generations. So, let that be a warning to you–no negative energy around us!!

Maria had a couple short episodes when we were there. Ate well when we got home and actually drank 8 oz of milk between 3:30pm and 6:30pm or so–I think Andy mentioned she hasn’t been eating so well, and neither milk nor juice can hardly pass her lips. She went to bed early, fell asleep probably 2 seconds after her head hit the pillow. I’m hoping we can go to school tomorrow. It’s been a week since she’s been, she’s going to have to get used to it all over again.

Sleeping Beauty

Wednesday, September 5th, 2007

Maria’s been sleeping pretty much continuously since Saturday, and that always makes us a bit nervous. She’s been eating OK when she’s awake, but hasn’t been drinking much. She’s had an on-and-off fever of 101-102 as well. Usually when Maria’s feeling crappy she wants to be held, but she has wanted to be left alone through this. It’s probably nothing, but with a kid like Maria everything looms larger.

Today Cathy is taking her to a woman who does craniosacral therapy. It’s another one of these boogety-boogety treatments that we try (in addition to traditional treatment, of course) with the idea that they do no harm and might actually help. Similar treatments have been qigong (which is the only one that seemed to do anything), reiki, and a faith healer.

Tomorrow, assuming Maria is well enough to go to school, Cathy is going to sit in on her class. The teacher was very open to the idea and Cathy hopes she can give them some tips on how best to interact with Maria.

Cathy got Maria into a new neurologist in early October. According to the scheduler he’s much nicer than Maria’s current one.

T-minus 5 Weeks to Manolis

Saturday, September 1st, 2007

Cathy didn’t mention that there is one other neurologist we would like to go to. He’s in the same office as Maria’s old neurologist. We want to meet with him for a get-acquainted visit to size him up before officially transferring him. The office refuses to let us see him without permission from the old neurologist. We don’t want her to know just yet. We want a chance to see if we like him first before creating problems, but they adamantly refuse. Silly me, I figure that Cathy is an adult and should be allowed to select her daughter’s doctors without getting permission. Yet another symptom of physician arrogance.

Maria continues to battle a cold on and off and was fussy and whiney all day yesterday. However, she had only one major “incident” yesterday and has had only a few all week so the medication may be starting to help.

And, since she doesn’t have enough to think about, Cathy still needs to make a decision on the cochlear implant. Maria’s speech therapist is completely against it, though he didn’t come out and say it that strongly. He feels the “language window” thing is a myth, although I don’t think that I agree with him – and neither does the majority of the speech therapy and audiology community. We honestly just have no idea which way to go on that so it will probably just get ignored for another few months.

Just five more weeks until Manolis comes back! Cathy’s feeling the strain of pseudo-single parenthood and it will be a big help to have him around.