So close yet so far...

Dr B said we're probably 95% controlled. How distressing that the 5% he's still having is causing so much issue for him.

We've gotten to a place where he's not having the stumbling issues with his meds, but the cognitive increases we saw when we bumped the meds up are gone as well. He's been randomly vomiting also and complaining of his belly hurting. So, not good signs either.

We're taking his valproic acid down - finally! This med never did anything for him, imo, in the first place. I don't believe it's helping the felbatol to work. But, we'll see. hopefully we won't see anything "bad" in decreasing this med. And, it actually might make the felbatol work better.

We have to have labs run though. That won't be fun for him. But, all of these symptoms he's having could be signs of getting toxic on the meds - dangerously. I don't think that's the case but we've got to be careful and check everything out.

There is a new med out on the market, Lyrica. We might try that one next if we don't get 100% control once we're off the valproic acid. The "bad" thing about it is that it can increase generalized sz's. It's good about controlling complex partials. Since Nathan has complex partials that secondary generalize, we have to be absolutely sure that the generalized sz's are fully under control before we try this med.

Damn it's never easy. OH, one good thing about Lyrica is that it can make you gain weight. Nathan is so skinny it's not even funny. That would definitely be a good side effect for him. I'm getting ahead of myself though. That's months down the line IF we decide to try it.

We're just hoping we see good things from the valprioc acid wean. Fingers crossed.

Med increase isn't going so well...

I got an email from one of Nathan's teachers last week letting me know he's been limping tripping and stumbling a lot. I had noticed it the night before but brushed it off to him being tired, as it was on his way to bed when I saw it.

I called the neuro, who was out so I talked to someone in her dept. His walk being affected is most likely a side effect of his meds being too high. We came home from the hospital increasing his 3 doses by 1cc - so we went from 12cc's a day to 15. We had to back down on the middle dose increase right away as we could just tell he wasn't tolerating it.

We've now backed down on the 3rd cc. So, at this point, he's only getting 1 additional cc a day (in the morning).

I don't feel he's functioning as well cognitively as he had been last week. And then to add insult to injury, I noticed him limping last night, just like I'd noticed that one night before bed. He's not doing it all the time - but I wonder if any time is not good at all.

We have an appt with the naturopath on Monday. I'm curious to hear what he has to say. I'll also be calling his main neuro on Monday as well. I have concerns that the felbatol is not interacting well with the valproic acid. I would like to get him off that med. It never gave him sz control at a high level, why would it be working now? Yes, I know the combined effect can be a positive one, but my moms gut tells me no. We'll see. I'll tell ya though, I don't like the stumbling.

Back to progress...

This increase in Nathan's felbatol from last week is undoubtedly doing the trick. For how long, who knows. Of course, my mother is blasting me for not being positive about it. I'm not being positive OR negative... I' m being realistic. I'm always hopeful the latest thing we've done is "the trick" but I'm not naive either.

So, we'll ride this ride as long as we can.

But, last night before bed, Nathan was flipping through, "Are You My Mother" by Dr. Seuss. He turned to a page and said, "that is 'the' ". I turned to another page and asked him if he saw the word "the" anyplace on that page and he correctly pointed it out. So, I'm confident he's now able to sight read the word, "the". I definitely feel like he's back to making progress. His teachers are sending home copies of his behavior chart every day. Its basically his schedule, IE, morning work, speech therapy, recess, lunch, etc. For every activity he completes with the appropriate behavior, he gets a sticker and at the end of the day, earns his choice of free time, or computer time, etc.

For the most part, he's come home with every, or almost every sticker filled in. So it seems like he's showing consistency with his behavior at school too.

The strangest thing I've noticed -- his breath. I've talked to his naturopath about that before. Bad breath is an indication of some kind of unhealthy situation going on - barring "morning breath". Nathans breath, recently especially, was always bad. Didn't matter if you'd just scrubbed his teeth or not. And, two weeks ago when he had pneumonia, OMG, you'd have thought the child was eating straight poop, not to be gross, but wow. It was b-a-d.

Well... no more bad breath. Not even in the mornings. I find that really interesting.

Anyway, fingers crossed we get at least a few really good months out of this recent increase.

Knowing what I now know...

I have always hated the inconsistency in Nathan's behavior. Well, "hated" might not be the right word... I hate that he's going through that and the inconsistency is upsetting and frustrating. But, I realized this morning that his inconsistent behavior has a purpose. Some kids can have a seizure, even repeated seizures and never experience setbacks. Apparently Nathan is not one of those kids. So, his inconsistent behavior is a barometer for us as to how he's doing. We now know that his sz's aren't presenting like they had been previously. Whether they're just so slowed down, or even subclinical... they're still messing with him even if we can't see them happening.

I'm going to give a spiral notebook to his teachers. I'm hoping they pass it to his therapists daily as well. I'm going to ask them to write in it daily - just a sentence or two - nothing elaborate. But, a sentence saying whether he was "on" that day or "off".

We would never have gone into the hospital for the overnight study had Nathan not stopped progressing cognitively. So, what I'd like to establish is a good pattern... or a not so good pattern.
I don't want to jinx myself, but since increasing the felbatol, he's definitely been more "with it" since then. He obviously needed it.

Getting back to posting...

So... it's been since November that I've posted. Wow. I guess I got a little distracted. I've been quite stressed out lately and so I thought I should get back to venting.

Since November, we've plateaued with Nathan's healing. He has good days and bad days but isn't really making true progress like he did initially after the huge reduction in his sz's.

We went in the hospital this past week for an overnight EEG and neuropsych eval. We learned that Nathan's still having some activity during the day. As far as I know, there was no nighttime activity. Since September, we'd had two daytime EEG's that showed NO sz activity. We'd been functioning on the assumption that he wasn't having any sz activity at all. Unfortunately, we learned that that wasn't quite the case. The silver lining in that is that we now know it and can address it. So, we're increasing his felbatol 1cc each dose. That began friday afternoon. Today, I witnessed Nathan pretend playing with 4 action figures from Sponge Bob. I cannot ever recall seeing him do that before. Coincidence??? I'm not getting myself all worked up over this. I just can't.

The neuro psych eval really kind of hit me with a huge dose of reality. I realized I've been watching Nathan expecting him to return to "normal" now that we'd gotten sz control. What I realized is this IS Nathan's normal - what normal is for him now anyway. There is no time machine. We can't go back and undo what's been done to his brain. We can try to heal him though. But the place we get him to when he's fully healed (if that happens) will be a totally different place than where he would have been had this never happened to him.

Sounds simple enough, but that concept had never occurred to me. I was trying to get Nathan back to who he was supposed to be, not focusing on who he can become.

A, B, C, D, E, F, G....

Nathan sang his ABC's tonight all the way through, all by himself, no prompting. That was the first time he's done that in I don't know how long. 6 or 9 months maybe? He's getting lost letters back too. He'd lost "H" for a while, which out of most of the letters, that one was the worst he'd lost because it was in his name. But, it's back. And, he's begun saying things like, "D for dog". He's got maybe 4 he says I think.

I let him have cake today. We went to Bounce U for a bday party for a neighbor. One of the bounce houses there was this obstacle course. There was this part where you have to climb a wall (think GI Jane desperately trying to climb over that wall, lol). Anyway, I could just see him over the side. He was getting so close and then he'd slide down. I swear he probably slid down 8 times. I was just cheering him on, holding myself back from jumping in there and giving him a little push. So, I just kept encouraging him, and by God, he finally got it. I had to choke back the tears. Ah to have had a camera and caught the look on his face when he got on top of that wall. It was incredible. So, yes, there was cake eating (aack and icing eating too). I let him eat the whole damn thing. I shouldn't have, then again, I don't think the mod atkins did much for him beyond the first little bit of time. And, he had a great rest of the day. I figure as long as he eats pretty healthy most of the time, a little bit of cake now and then is ok.

I so wish I had a crystal ball to see where he's going to be in a year. My mom said each time she sees him she sees a little bit more of an improvement. And, yeah, I see them too but they aren't as pronounced to me as they are to her. I would love to just get a peek into the future.

Parent-teacher conference today

Or should I say parent-teacherS conference. Yikes. I was a bit intimidated when I first walked in. In the room was me (obviously), Mr. M (aka the Big Guy, lol), the Principal, Amy the ST and another lady, can't remember her name but she's the music therapist. For a split second I was prepared for them to just devastate me. But... despite all that was said, it went ok and I expected to hear most of what I heard.

I didn't expect to hear them tell me his IQ right now is a 70. I immediately said, "doesn't 70 put him in the M.R. range?". The principal said, "M.R. begins at 69. Thank God for 1 point, huh?

However, they can't and haven't been able to fully evaluate him. This summer, he just could not and would not cooperate. So, when Nathan couldn't answer the question, he "missed" that one, or however you do an IQ test on a 5yo. Well, and rightfully so. That's how he was functioning then.

We also talked about his report card. He had quite a few "AC's" or Area's of Concern. I asked if they were area of concern because they were rating him next to a TDK (typically developing kid) and in which case we knew he would rate low or if they were concerned still after evaluating him against his current cognitive functioning level. Unfortunately, that's not an easy question to answer. Nathan's brain - the current state of it and the state it will be in tomorrow, next week and next year are still so up in the air.

Right now, it's safe to say he has brain damage. It's NOT safe to say it's permanent. Only time will tell. Right now he's functioning on about a 3 year old level, which we knew. And, also, they said exactly what I've thought too... that he's picking up about where he left of 1 1/2 years ago. Well, no that's not entirely true. Nathan was so bright as a 3 year old. He could tell you every letter of the alphabet, the sound it made and words that start with that letter. Now he's having trouble even correctly identifying more than 16 letters in the alphabet.

But, everyone feels he's made improvements in the last 6 weeks or so. His ST said she just loves working with him, that she's even gotten a few kisses out of him. I wish his OT had been there though. I haven't met her yet as awful as that it. He's met about 80% of his current speech goals and about 65% of his OT goals. I requested a music eval for music therapy for him. She came and did the eval and said it was a bit inconclusive whether or not he'd benefit from it. I believe he totally would. And his teacher commented on how much he loves music class. The principal seemed reluctant to approve it, but the Big Guy asked if we could try it for 2-3 months and see if we make any progress with him. (I really like the Big Guy, lol. I truly believe he's an excellent advocate for Nathan and is personally invested in his education.) So, we're going to start that.

It's already come up that he'll most likely be repeating K next year. I think it's too early in the year to say something like that, but on the other hand, yes, I think it will be necessary. But, then again, we just don't know how he's goin to be in 6 months. But that's asking him to make up a whole lot of time in the next 6-7 months - not only make that time up but get up to speed as well.

Nathan goes into his mainstreamed room about 3 times a day. 30 min for calendar time, 30 min for phonics and another 15 or so for other activities. The Big Guy mentioned how the other kids are really taking to Nathan - but in the way that they realize something not quite "right" with him. But they encourage him and sort of treat him like they're the older brother/sister??? Which is really nice, but yet, he needs friends too. I asked TBG if Nathan has any friends but I don't believe he does and social skills are something they need to be working on iwth him. He's made a few motions to play with other kids but lately they said he's been retreating a bit more - which is concerning to me. They have a group of kids with high functioning autism that they're doing a social skills group with. Nathan is going to begin going to that as well. I asked if the autism room was more appropriate for him. Well, the kids iwth autism in the autism room are severe or low functioning so that wouldn't work. The kids high functioning are mainstreamed as much as possible. So, he's really in the best room available - not quite really the best room for him. But then again, Nathan is truly a unique case. As if I didn't already know that ;-)

So, we're just going to push ahead, mainstream him when he's able, try to increase his social skills and see how his brain is recovering.

I just so totally believe that his brain is going to be healed. I believe his cognitive functioning is going to improve and increase. I swear as awful as it is, when the principal told me his IQ the first thing I thought of was Forest Gump. And that's alittle like Nathan is right now. Things are black and white for him, he's not really social, but he loves us and knows we love him too and he's loving and gentle and cuddly. He tells the babies all the time that he loves them, usually while he's stroking their heads. He gives kisses a lot. But, his knowledge of things are just really limited. He knows the basics. I asked him today, "how old are you?" - a question he's been getting right for a few months. He answered, "fine". So, that kind of bothered me. But, then when we went upstairs to get ready for bed, he got himself undressed and went in to go potty and peed and pooped - then went in a put on a pullup and his jammies. All of this was while I was across the hall in Em's room. So, that's pretty damn good if you ask me.

Time, we just need time.