We lowered to meds (Lamictal) to half, per okay from his neurologist, as she said some of the things we were seeing were bad side effects, and any behavioral side effect we should lower or change the meds. We cut them in half, and it has been about a week. We are going to give it another week, and see how that seems, but I think I am leaning towards a time off meds before trying a different one. The neurologist say's that is risky as he has such an abnormal EEG that the likely hood of him having a seizure is high, but, I have never seen him have one outside of the stimulation of putting his eyes and head up to a old fashioned TV screen, so I think he's safe to be off of them for a few months. I feel like I see some improvement since coming off the meds, but Jason doesn't, and his teachers don't really either. He's still super impulsive and screams and cries a lot. Yesterday he flipped his desk over at school. :-( He's not going to be allowed to stay in a class like he's in with that kind of behavior.
I should probably start the homeopothy again...... probably. I'm not sure I see a huge difference between the homeopothy and now. He still has improvements in speech and interaction on a regular basis, but with day's of him going "crazy". Which if we were on the homeopothy we would just call a "healing reaction". He's made a lot of strides since getting on the meds, just like he did while on homeopothy. He's learned to swim, he's made attempts on a scooter and a bike, his speech and strings of speech and asking for what he wants is nothing short of amazing. But who's to say it's the meds, the homeopothy..... or just growing up? I'm thinking it's probably just growing up.
I will update if we go completely off the meds.
Love,
Willow
Tuesday, November 23, 2010
Saturday, October 23, 2010
Updates on Meds and life.....
So we have been at full dose of Lamictal for a few months now. Pretty much since school started. I read over what I wrote last time, and I feel like he's on a downswing. He's still talking a ton, more clearly and longer sentences, but he's anxious and seems to get more easily upset. Church has been hard, he has a really hard time with noises and seems more sensitive to it. The last week and half or so he's been really tired. Sleeping a lot during the day, and still going to sleep a okay at night. We are having to really work on waking him up from his day time naps. This is new, he hasn't been napping during the day in a while.
His teacher said he was more impulsive this last week, which is a big deal because he's so impulsive as it is. He is having a hard time sitting at all. We took him to a restaurant last week, and he screamed and cried most of the time. He REALLY wanted Mac and Cheese, and then when we ordered it for him, he cried so much, that Jason took him out to McDonalds and got him a happy meal, because that seemed like the only thing that would make him happy. Micah and Elijah and I sat in the restaurant while Jason walked him over and got him a happy meal. He seemed okay after that. We had to go to Reno for Jason's mom's wedding. We went to Circus Circus, which is the ultimate overstimulating environment. He was a mess. He had a really hard time. He wanted to escape constantly, he wanted what he wanted, and if he didn't get it he cried. It was horrible.
The tic like behavior seems to be gone, as does most of his eye fluttering. We got this stuff that makes him not suck his thumb, but he bites his hand instead, not much better, almost worse.
He's also backed up right now, and were starting to give him more and more miralax. He has yet to pass the poop yet, and I'm hoping after he does he will be happier. He is eating less, and is less willing to eat things he does not want. He pushes it away and cries. His crying is so sad, his tears are so real and extreme.
That's all I have for now. We have a follow up Ped. Neurology appointment, but I think I'm going to cancel it and make a phone appointment. I don't want to drive out there just to talk to the lady. We can do that on the phone. I'm not sure what she will say. Maybe we should try a different med, or maybe lay off the meds for a while. I don't know. That's all for now, I'll write more as I think of it.
Love,
Willow
His teacher said he was more impulsive this last week, which is a big deal because he's so impulsive as it is. He is having a hard time sitting at all. We took him to a restaurant last week, and he screamed and cried most of the time. He REALLY wanted Mac and Cheese, and then when we ordered it for him, he cried so much, that Jason took him out to McDonalds and got him a happy meal, because that seemed like the only thing that would make him happy. Micah and Elijah and I sat in the restaurant while Jason walked him over and got him a happy meal. He seemed okay after that. We had to go to Reno for Jason's mom's wedding. We went to Circus Circus, which is the ultimate overstimulating environment. He was a mess. He had a really hard time. He wanted to escape constantly, he wanted what he wanted, and if he didn't get it he cried. It was horrible.
The tic like behavior seems to be gone, as does most of his eye fluttering. We got this stuff that makes him not suck his thumb, but he bites his hand instead, not much better, almost worse.
He's also backed up right now, and were starting to give him more and more miralax. He has yet to pass the poop yet, and I'm hoping after he does he will be happier. He is eating less, and is less willing to eat things he does not want. He pushes it away and cries. His crying is so sad, his tears are so real and extreme.
That's all I have for now. We have a follow up Ped. Neurology appointment, but I think I'm going to cancel it and make a phone appointment. I don't want to drive out there just to talk to the lady. We can do that on the phone. I'm not sure what she will say. Maybe we should try a different med, or maybe lay off the meds for a while. I don't know. That's all for now, I'll write more as I think of it.
Love,
Willow
Sunday, July 4, 2010
Update
Well here we are on July 4th, 2010. I have not really followed up too closely with the homeopothy. It's not that I think it does nothing, it's just that we are doing the Seizure Med's right now, and I don't want to do both.
So we started Lamictal about 4 weeks ago. We had to start very, very slow because of the possibility of a deadly rash. We started at 1/2 tab every morning and every night, and then 1/2 tab at night. Now we are up to 1 1/2 tabs in the Am, and 1 at night. We go up a 1/2 a tab a week. The lowest therapeutic does will be 4 tabs, (100mg) twice a day. So, that is why I have not written much. But........ it's very possible it's helping.
This update is not just about the Seizure meds, just and update in general. I am just going to list all of the new and great things he is doing latley.
Before we started the meds, we realized he was really starting to have a great sense of humor. He would draw things and laugh at them, do little things he thought were funny over and over. That was really cool to see, because they say once someone can make a joke in a language, they are really starting to get a grasp on it.
He is drawing, a lot. Real representative drawings. And writing too. He consistently writes his name, and has written Mom, and Elijah and Micah, (attempts at spelling). He is really starting to be interested in language, words, letters and how things are spelled. He loves to do a search on the computer, for spongebob or Wall E toys. We just tell him which letters to type in and he searches and finds them. He loves that. And of course, he loves looking at the toys.
He is talking...... a lot!! And it's clearer. He can communicate most things he wants to. There is still plenty we don't understand, but it's getting better and better. We still can't really have a conversation with him about his day, but I know we will be able to someday. He is beginning to answer abstract questions like, who did you play with today? Or what did you get for Christmas? Open ended questions. The other day as we were walking from school, I asked him, who is your best friend, (I was meaning at school, but he took it literally). He said, Elijah, Elijah is my best friend, and Micah too. I just loved to hear that, because it's true, Elijah is his very best friend. Yesterday he would not get in the pool without Elijah, and he walked around looking for him, saying, "Elijah, Elijah, where are you? Come in the pool with me"
He communicates his basic needs very well...... for example, he often say's, "I want some water, I need some water", or, "Go to the bathroom", or "Go to school, Mrs. Whatford". It's not perfect sentence structure, but who cares. He's talking. And he's working on Sentence structure with Alicia.
His constipation is much better, although not solved by any means. We think that Melatonin and dairy was making it bad. We took him off dairy, and then realized since he was not taking naps anymore he really did not need the melatonin, so we took him off that, it was much, much better. Then he went back on Melatonin for some reason, and it got bad again. So we saw the correlation, and we took him off it again, and it's been better. No one anywhere has associated melatonin with constipation, but there you go, goes to show that every kid is different and they respond to differing things differently. We still have him off dairy, and do notice the constipation get's bad when we weaken and give him some dairy. He's still pooping in diapers, although he did have 1 succussful bowel movement in the potty at school, he has not done it since, even with some very exciting rewards if he did. We are calling in a behavior specialist to help us with this. He is totally able, he just won't, it's crazy. He'll ask for a diaper, so we know he knows when he needs to go, just won't push it out on the potty. And if we don't give him a diaper, he'll go in his pants. Ahhhh....... in August we'll be getting help with this. Yay for North Bay Regional Center and the work they do.
He is calmer over all. He will sit for longer periods of time, and even though he still likes to run and escape, he's less likley to try, and well, he's just all around better, older and more mature. He has even lost some weight over the summer. The combination of not sitting in a desk most of the day, and eating less at home then he did at school, is what did it I think, I am worried he'll gain it all back when the school year starts, gonna have to only give him carrots for snacks.
Well, I think that's all for now. The only possible negative side effect I have seen is a little bit of increased, and typical TIC like behavior, throat verbal tics and eye blinking, but not much, just more. Oh, and we MAY have gotten rid of his thumb sucking habit. (this makes me kinda sad, but I know necessary). I found this thumb polish on line, called MAVALA, it's from Sweeden I think. I put it on his thumb Monday, Tues, and Wed, and the only time he accidentally started sucking his thumb, he asked to drink a whole glass of water. Zero thumb sucking at school and lots of talking. The teacher is so happy, she is the one who really wanted to see him stop. I know he's too old to suck his thumb, but if it comforts any pain his body might be in, I say go for it. I left it off for a few days to see if he would suck it at home. Nope. He has NOT sucked his thumb all weekend. Not even at 10pm at night at the Fireworks last night. Wild. I can't believe such a major part of his life could be over in 3 short days of intervention.
Well, I hear toys crashing to the floor upstairs so that must mean he's pooping. His room is a mess. He's really into tearing paper into tiny, tiny bits and strewing it around his room lately. Wild. Anyway, definitely some good, not sure if it's from the little bit of homeopothy, or the Seizure meds or what, but good is good, and I'll take it. I will update more as things change.
Now off to get ready for Church on this beautiful Fourth of July morning.
Love,
Willow
So we started Lamictal about 4 weeks ago. We had to start very, very slow because of the possibility of a deadly rash. We started at 1/2 tab every morning and every night, and then 1/2 tab at night. Now we are up to 1 1/2 tabs in the Am, and 1 at night. We go up a 1/2 a tab a week. The lowest therapeutic does will be 4 tabs, (100mg) twice a day. So, that is why I have not written much. But........ it's very possible it's helping.
This update is not just about the Seizure meds, just and update in general. I am just going to list all of the new and great things he is doing latley.
Before we started the meds, we realized he was really starting to have a great sense of humor. He would draw things and laugh at them, do little things he thought were funny over and over. That was really cool to see, because they say once someone can make a joke in a language, they are really starting to get a grasp on it.
He is drawing, a lot. Real representative drawings. And writing too. He consistently writes his name, and has written Mom, and Elijah and Micah, (attempts at spelling). He is really starting to be interested in language, words, letters and how things are spelled. He loves to do a search on the computer, for spongebob or Wall E toys. We just tell him which letters to type in and he searches and finds them. He loves that. And of course, he loves looking at the toys.
He is talking...... a lot!! And it's clearer. He can communicate most things he wants to. There is still plenty we don't understand, but it's getting better and better. We still can't really have a conversation with him about his day, but I know we will be able to someday. He is beginning to answer abstract questions like, who did you play with today? Or what did you get for Christmas? Open ended questions. The other day as we were walking from school, I asked him, who is your best friend, (I was meaning at school, but he took it literally). He said, Elijah, Elijah is my best friend, and Micah too. I just loved to hear that, because it's true, Elijah is his very best friend. Yesterday he would not get in the pool without Elijah, and he walked around looking for him, saying, "Elijah, Elijah, where are you? Come in the pool with me"
He communicates his basic needs very well...... for example, he often say's, "I want some water, I need some water", or, "Go to the bathroom", or "Go to school, Mrs. Whatford". It's not perfect sentence structure, but who cares. He's talking. And he's working on Sentence structure with Alicia.
His constipation is much better, although not solved by any means. We think that Melatonin and dairy was making it bad. We took him off dairy, and then realized since he was not taking naps anymore he really did not need the melatonin, so we took him off that, it was much, much better. Then he went back on Melatonin for some reason, and it got bad again. So we saw the correlation, and we took him off it again, and it's been better. No one anywhere has associated melatonin with constipation, but there you go, goes to show that every kid is different and they respond to differing things differently. We still have him off dairy, and do notice the constipation get's bad when we weaken and give him some dairy. He's still pooping in diapers, although he did have 1 succussful bowel movement in the potty at school, he has not done it since, even with some very exciting rewards if he did. We are calling in a behavior specialist to help us with this. He is totally able, he just won't, it's crazy. He'll ask for a diaper, so we know he knows when he needs to go, just won't push it out on the potty. And if we don't give him a diaper, he'll go in his pants. Ahhhh....... in August we'll be getting help with this. Yay for North Bay Regional Center and the work they do.
He is calmer over all. He will sit for longer periods of time, and even though he still likes to run and escape, he's less likley to try, and well, he's just all around better, older and more mature. He has even lost some weight over the summer. The combination of not sitting in a desk most of the day, and eating less at home then he did at school, is what did it I think, I am worried he'll gain it all back when the school year starts, gonna have to only give him carrots for snacks.
Well, I think that's all for now. The only possible negative side effect I have seen is a little bit of increased, and typical TIC like behavior, throat verbal tics and eye blinking, but not much, just more. Oh, and we MAY have gotten rid of his thumb sucking habit. (this makes me kinda sad, but I know necessary). I found this thumb polish on line, called MAVALA, it's from Sweeden I think. I put it on his thumb Monday, Tues, and Wed, and the only time he accidentally started sucking his thumb, he asked to drink a whole glass of water. Zero thumb sucking at school and lots of talking. The teacher is so happy, she is the one who really wanted to see him stop. I know he's too old to suck his thumb, but if it comforts any pain his body might be in, I say go for it. I left it off for a few days to see if he would suck it at home. Nope. He has NOT sucked his thumb all weekend. Not even at 10pm at night at the Fireworks last night. Wild. I can't believe such a major part of his life could be over in 3 short days of intervention.
Well, I hear toys crashing to the floor upstairs so that must mean he's pooping. His room is a mess. He's really into tearing paper into tiny, tiny bits and strewing it around his room lately. Wild. Anyway, definitely some good, not sure if it's from the little bit of homeopothy, or the Seizure meds or what, but good is good, and I'll take it. I will update more as things change.
Now off to get ready for Church on this beautiful Fourth of July morning.
Love,
Willow
Friday, March 12, 2010
About to Start Homeopothy AGAIN
So I have taken a huge break from homeopothy. For a variety of reasons, in the fall, it was because I was trying the seizure meds, and I didn't want to do both at the same time, so I could truly decipher what was helping. Then...... it just became one thing after another.... for a while we didn't have the extra cash, the holidays were a time of being strapped. Jason definitely has some questions about whether it really does anything or not..... but, I figure it's so inexpensive, and it seems to have helped before....... so I have decided to keep trying. I just received the package today. Overall, it seems ben has been doing better over the last few months. We took him off Dairy, and his constipation has gotten way better..... he had a while of getting backed up again, so we emptied him out with Miralax, and now he's pooping on his own, and his behavior certainly has gotten better since he's pooped... but still, he's kinda in a downward phase. During his, "good time", he started answering questions like, "What did you get for Christmas...... I think he answered something Micah got, but still, he answered a question. He seems to be doing that more and more, which is awesome. But lately, the last few weeks, he seems more, "Autistic" then ever, in his own world, kinda freaking out and being hard to "convince" to do certain things. He has been running away from his teachers at school, and seems to need almost constant "stimulation" in order to stay still. Squeezes, and foot and hand massages have increased. Today, we went on to see a musical show as a field trip at his school. Ben sat between me and one of his teachers, and constantly requested squeezes, clapping, needing to move and be stimulated in some way. Definitely makes me think, maybe a "stimulant" in the form of an ADHD drug might help. He has also been an EATING machine. He wants to eat non stop, and even though the choices we give him are generally healthy, (protein bars, almonds, Almond butter and Honey sandwiches, Whole grain chips, fruit and soy milk, he wants to eat constantly, and trying to get him out of the kitchen and away from his desire is almost impossible. As a result he is gaining more and more weight. It makes me so sad to look at his rolly polly body..... I feel so helpless in this area. We control what goes in his mouth, but when he's desperate for food, it take's ALL our energy to move him towards something else, and it usually doesn't work until he get's what he wants. I am worried about it for sure.
I think this recent downward spiral started when Ben made his way up to the non LCD TV in the kids play room, and had another seizure. I feel like I stopped the TV staring midway, but it was too late. I saw him doing it and screamed at him to stop. He took a few steps back and then started to seize. It wasn't as big as the others, and I almost feel like he didn't get a full one, like he wanted to, or was meant to in a sense. He didn't empty his bowels, and he did not seem to improve afterwards like he did before. If anything, he has seemed worse. He has been backed up again. We took him off Melatonin a few months back, because we just didn't feel like he needed it anymore, since he wasn't really napping during the day. We were also concerned that it could be contributing to the seizures. But seeing him have another seizure even without the melatonin influence, and the fact that he has been back to his crazy at night having a hard time settling down to bed phase, we started him back on it. I'm not 100% sure of the correlation, but it seems like he has been backed up again since then, and we have been giving him Miralax every few weeks to clean him out. He's been crazy. There has never been any link to melatonin and constipation before, but then again, Ben is a mystery.
So here we are again.... starting with the daily dropper, the first packet we will do will be to clear for the miralax he has had recently, then we will do some vaccines. We have not even gotten to his birth yet, and after that we will have lots of things to do. So...... here we go again..... I worry about the healing reactions, as they have always been a bit hard and tend to be on the destructive side, but hopefully he will come out better in the end. I will try to update as we go along. OH...... and, we are getting him a dog in about a week! We are going to train it to help him, and be his best friend, hopefully this will be a huge help to him also.
Blessings,
Willow
I think this recent downward spiral started when Ben made his way up to the non LCD TV in the kids play room, and had another seizure. I feel like I stopped the TV staring midway, but it was too late. I saw him doing it and screamed at him to stop. He took a few steps back and then started to seize. It wasn't as big as the others, and I almost feel like he didn't get a full one, like he wanted to, or was meant to in a sense. He didn't empty his bowels, and he did not seem to improve afterwards like he did before. If anything, he has seemed worse. He has been backed up again. We took him off Melatonin a few months back, because we just didn't feel like he needed it anymore, since he wasn't really napping during the day. We were also concerned that it could be contributing to the seizures. But seeing him have another seizure even without the melatonin influence, and the fact that he has been back to his crazy at night having a hard time settling down to bed phase, we started him back on it. I'm not 100% sure of the correlation, but it seems like he has been backed up again since then, and we have been giving him Miralax every few weeks to clean him out. He's been crazy. There has never been any link to melatonin and constipation before, but then again, Ben is a mystery.
So here we are again.... starting with the daily dropper, the first packet we will do will be to clear for the miralax he has had recently, then we will do some vaccines. We have not even gotten to his birth yet, and after that we will have lots of things to do. So...... here we go again..... I worry about the healing reactions, as they have always been a bit hard and tend to be on the destructive side, but hopefully he will come out better in the end. I will try to update as we go along. OH...... and, we are getting him a dog in about a week! We are going to train it to help him, and be his best friend, hopefully this will be a huge help to him also.
Blessings,
Willow
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