Since January - so for the past three months, V's diet has steadily changed. He still has to have a low carb diet or he won't function but I haven't been giving him his spinach goop. It all started with our being out for ten days and his growing up. He is a lot more aware of and asks for foods he knows he cannot eat. He ate salad and chicken really regularly during the travel. After coming back home, he went on this I don't want the same food and I don't blame him. So I had to figure out how to still get him his daily quota of vitamins and minerals. So I started making different variations of the chicken that he could eat and things are going well so far. The different foods he has now for lunch/dinner are as follows:
- chicken salad: chicken with a mix of lettuce, onions, carrots and cabbage
- spinach, garlic and cheese sausage
- kosher hot dog: one has to really hunt for the right kind of hot dog.
- chicken soup: I make the broth with spinach, daikon, greens as well as some spices, then add chicken to it
- plain chicken cooked in different ways - with gravy, with indian spices, with just onions, garlic.
- cheese
I also learned that lettuce is high in magnesium so it kind of makes up for him not having daikon everyday. In addition, he still has his daily quota of nuts - almonds, cashews and raisins which really helps. He still has his quota of banana (2 a day now), at least 3 glasses of milk with ovaltine and yogurt on a daily basis.
V has come a very long way with his social skills this year. He is able to play with kids, he got invited to a couple of birthday parties and he is able to carry on a sustained conversation with kids, not just adults. He continues to charm the adults which has always been a factor that hides his deficiency with regards to interacting with children.
Number sense continues to allude him. He has learned how to add, subtract, regroup and does so mechanically but he doesn't seem to have that innate number sense. Not sure when and how it will click and I will keep trying just as much as the staff in his school keep trying to work with him on the same.
V read his first big chapter book a couple of months back - Roald Dahl's Charlie and the Chocolate Factory. I was extremely thrilled. If I look at how far he has come along - not knowing his letters at the beginning of kindergarten to reading a Roald Dahl in second grade - in just 2 years. That's clearly a miracle in my opinion. He is on a roll as far as reading and writing goes. He has been enjoying writing stories and I again think that this year has just been really marvellous for him - his teacher is a great match, she is accomodating, yet has him do the tasks, knowing his potential, he has been enjoying school a great deal. Things seem to be finally starting to fall in place.
Tuesday, March 24, 2009
Tuesday, March 10, 2009
Full Moon and update on nutrition
It is said that the full moon brings about several urgent care cases - I have no idea whether or not this is true, but the fact is that the full moon adversely affects V. and has been for as long as I can remember when he started with seizures. It is funny but I always know that it is approaching full moon or it is the day, not because I have seen the moon but because I have noticed V's nocturnal movements being different, that too at specific times. The moon shines really bright through our bedroom windows and blinds when it is around full moon. I haven't tried to get a sheet that would try to completely shut out the effect of the moon - maybe I should. However, when the moon does get to the phase when it is shining bright outside our window, V's kicks/jerks start. He has a disturbed sleep pattern for about an hour or two until the moon moves and then he sleeps fine. How is it that I suddenly remembered this? Well, I do think of writing about the changes with the moon, but am never at the computer when I do remember. Tonight is full moon and V's sleep has been disturbed the past two nights - call this insane if you may - I would've never believed any of this - but the pattern is loud and clear. I don't know if it is the particular nature of the moon's light that causes his anxiety or just the moon itself but it does happen.
I wanted to write about V's nutritional update for the past two months. Ever since we came back from our trip in January, he became flaky about eating his spinach goop. He did eat it for about a week but his taste buds have certainly come to life. He asks for different foods, gets a lot more upset if his dad or sister are eating something that he isn't allowed to eat and he is more demanding about his food. There are obviously pros and cons. The good thing is that even without making the goop he is doing just fine. However, he sticks to the same diet. He has breakfast foods for dinner - like sausage - which doesn't matter because it fills his stomach. He likes to eat chicken soup, he still loves salad, and he loves hot dogs. I have searched for the right sausages and hot dogs - 0 carbs and natural. He still eats his daily dose of milk, yogurt, bananas and nuts. I am happy that he eats a variety within limits and is able to hold up fine. Hoping that the same continues. I would like to see him do fine with all foods one day - I am sure the day will come.
I wanted to write about V's nutritional update for the past two months. Ever since we came back from our trip in January, he became flaky about eating his spinach goop. He did eat it for about a week but his taste buds have certainly come to life. He asks for different foods, gets a lot more upset if his dad or sister are eating something that he isn't allowed to eat and he is more demanding about his food. There are obviously pros and cons. The good thing is that even without making the goop he is doing just fine. However, he sticks to the same diet. He has breakfast foods for dinner - like sausage - which doesn't matter because it fills his stomach. He likes to eat chicken soup, he still loves salad, and he loves hot dogs. I have searched for the right sausages and hot dogs - 0 carbs and natural. He still eats his daily dose of milk, yogurt, bananas and nuts. I am happy that he eats a variety within limits and is able to hold up fine. Hoping that the same continues. I would like to see him do fine with all foods one day - I am sure the day will come.
Sunday, January 11, 2009
New Year - turning 8
So, yet another year has gone by, two whole years completed seizure free - I don't feel as superstitious saying it anymore. For the longest time, I would hesitate to say that we have had seizure free days, then weeks. I would just say he is doing way better or that there haven't been any noticeable incidents or episodes, without specifying what I meant by incidents or episodes.
The diet continued through its second year with minor modifications. Over the past three months, the following is what changed and it has made life a whole lot easier of course.
1. Dinner times. I had mentioned earlier about how V would have to eat at a specific time - at least two hours before going to bed, about how he couldn't eat meats in the evening and how all of this could cause him to have nightmares. Well, as he started growing, his appetite has been increasing, he needs more food before going to bed. It started one day when he asked for a hot dog about an hour after he had eaten his spinach. I made it, he ate it and he was fine through the night - no nightmares, no jerking, nothing different noticeable. So I began giving him chicken or turkey salad, or a hot dog or a sausage in the evening as well. Not only did it help his appetite in the evening, he didn't get up feeling starved, or like sometimes wake up early only because he was hungry.
2. The night time jerking has been very minimal. In fact, it is hard for me to remember when I last noticed it. He seems to be way more normal with his night sleep.
3. He has been asking for foods that he didn't look at the past two years - again part of his growing up I assume. He will sniff in the air, say this smells good, then want to look at what the food is and whether he can taste it. He is really good about taking the no about the tasting if it is a total taboo food but he really seems to want those foods now.
All of the above made it so much easier when we did a road trip during this past winter break. I am so paranoid about what day we can leave and what day we can come back, thinking always to the first time all of this started - which was after our Portland road trip. Also, we were gone for 10 days which made packing V's spinach so much more challenging. School didn't end till Friday, when I started cooking his food which takes about 2-3 hours, if not more. We were to leave Sat. early morning - before which I was dropping my cousin and her family to the airport. Since we were going to places where we could get all of his usual snack food, that wasn't an issue. We tried to find restaurants where he could get some food at least - invariably, he would eat chicken salad and milk. The restaurant folks everywhere, even in a remote place were highly accomodating and provided for food that wasn't completely available off the menu.
V celebrated his eighth birthday and couldn't get to eat a great deal of the food but could get to enjoy himself without me worrying about what would happen, not letting him out of sight, etc.. He does have a great deal of temper tantrums at home these days as well anger issues. It could be one or both of two things - due to the low carb diet, it can cause anxiety - this is something I read recently - and his basic nature is what might be surfacing. He is able to remember and recollect several facts and incidents, surprising me all the time with the information he gives me. He does struggle with his spatial reasoning and really does not truly get Math, but is able to do what is taught to him - the program that has worked for him is touch math. He is also writing really neatly and his handwriting is a surprise, given where he started at. Reading is his strength (besides computers) and he is really enjoying doing it for which I am so very grateful. Things do change week to week depending upon how he is doing with his sleep and viruses but I continue hoping for the best and we keep charging ahead.
The diet continued through its second year with minor modifications. Over the past three months, the following is what changed and it has made life a whole lot easier of course.
1. Dinner times. I had mentioned earlier about how V would have to eat at a specific time - at least two hours before going to bed, about how he couldn't eat meats in the evening and how all of this could cause him to have nightmares. Well, as he started growing, his appetite has been increasing, he needs more food before going to bed. It started one day when he asked for a hot dog about an hour after he had eaten his spinach. I made it, he ate it and he was fine through the night - no nightmares, no jerking, nothing different noticeable. So I began giving him chicken or turkey salad, or a hot dog or a sausage in the evening as well. Not only did it help his appetite in the evening, he didn't get up feeling starved, or like sometimes wake up early only because he was hungry.
2. The night time jerking has been very minimal. In fact, it is hard for me to remember when I last noticed it. He seems to be way more normal with his night sleep.
3. He has been asking for foods that he didn't look at the past two years - again part of his growing up I assume. He will sniff in the air, say this smells good, then want to look at what the food is and whether he can taste it. He is really good about taking the no about the tasting if it is a total taboo food but he really seems to want those foods now.
All of the above made it so much easier when we did a road trip during this past winter break. I am so paranoid about what day we can leave and what day we can come back, thinking always to the first time all of this started - which was after our Portland road trip. Also, we were gone for 10 days which made packing V's spinach so much more challenging. School didn't end till Friday, when I started cooking his food which takes about 2-3 hours, if not more. We were to leave Sat. early morning - before which I was dropping my cousin and her family to the airport. Since we were going to places where we could get all of his usual snack food, that wasn't an issue. We tried to find restaurants where he could get some food at least - invariably, he would eat chicken salad and milk. The restaurant folks everywhere, even in a remote place were highly accomodating and provided for food that wasn't completely available off the menu.
V celebrated his eighth birthday and couldn't get to eat a great deal of the food but could get to enjoy himself without me worrying about what would happen, not letting him out of sight, etc.. He does have a great deal of temper tantrums at home these days as well anger issues. It could be one or both of two things - due to the low carb diet, it can cause anxiety - this is something I read recently - and his basic nature is what might be surfacing. He is able to remember and recollect several facts and incidents, surprising me all the time with the information he gives me. He does struggle with his spatial reasoning and really does not truly get Math, but is able to do what is taught to him - the program that has worked for him is touch math. He is also writing really neatly and his handwriting is a surprise, given where he started at. Reading is his strength (besides computers) and he is really enjoying doing it for which I am so very grateful. Things do change week to week depending upon how he is doing with his sleep and viruses but I continue hoping for the best and we keep charging ahead.
Saturday, December 13, 2008
The past week
Having been relieved that the fever lasted only for a night and it was incident free, I assumed things would go the way of a regular virus. However, that was not to be. The past week was a long one and one I don't wish to have again. Of course, its all in perspective. Compared to the past, this was nothing. V started with a cough as I had said following his fever. He coughed way more than he had when he had had coughs previously. Not just that, he coughed several times during the day and a few times at night. He was exhausted, he had a difficult time following directions in school, his behavior was impacted and he got into trouble on the playground as well, even losing recess time on one of the days. He was miserable in the evenings and would go to bed by 7:30.
In the mornings, at 7:15 a.m. I would carry him out of bed to the bathroom, dress him up, put him on the table for breakfast. He would insist on going to school each day and he wasn't that sick that I could keep him home. It was miserable as the cough sounded like a whooping cough, he was fatigued and the nights weren't very smooth - in the sense that I caught some jerking and one time what seemed like a head drop through three nights. By Thursday, I was contemplating having his chest checked fearing the worst. He seemed a little better on Thursday evening and by Friday, though not quite himself, he got up early in the morning feeling hungry - this was a fantastic sign as he hadn't felt like doing anything - playing, drawing, eating; I would still be shoving the spinach goop down his throat and his daily banana. He didn't mind his daily quota of milk and yogurt but refused to eat his nuts which are really needed. Last night he slept again for twelve hours but he has woken up on his own - no school - no need to wake him up - and is enjoying his breakfast right now. He has a piano recital today which he has not practised for but we'll see how it goes.
Through all of this, he barely managed to do his homework every evening but his teacher has been very accomodating, giving us more time when we need it, not pushing him past his limits, letting him turn in some of the writing homework the following Monday and this has been the case from the beginning of the school year when the teacher voluntarily let me know that I could ask for more time whenever he needs it - that is such a comfortable feeling - to know that she will let him have it. At the same time, I have to be careful not to abuse that privilege and have him do the work whenever he can do it on time, which did happen the first two months of the school year until the projects got into a larger amount of writing.
One more good aspect of this past week was his starting with a social skills session with the school psychologist -it is with the intern but she is also good. He enjoyed the session, remembered to tell me about it and I hope this translates into various aspects of his interactions. This is the one area which is still my biggest concern - his interaction with his peers.
V continues to struggle in the area of Math - nowhere compared to even six months ago but the catch up seems a lot more daunting in this area. We just have to continue to take one step at a time and keep going.
In the mornings, at 7:15 a.m. I would carry him out of bed to the bathroom, dress him up, put him on the table for breakfast. He would insist on going to school each day and he wasn't that sick that I could keep him home. It was miserable as the cough sounded like a whooping cough, he was fatigued and the nights weren't very smooth - in the sense that I caught some jerking and one time what seemed like a head drop through three nights. By Thursday, I was contemplating having his chest checked fearing the worst. He seemed a little better on Thursday evening and by Friday, though not quite himself, he got up early in the morning feeling hungry - this was a fantastic sign as he hadn't felt like doing anything - playing, drawing, eating; I would still be shoving the spinach goop down his throat and his daily banana. He didn't mind his daily quota of milk and yogurt but refused to eat his nuts which are really needed. Last night he slept again for twelve hours but he has woken up on his own - no school - no need to wake him up - and is enjoying his breakfast right now. He has a piano recital today which he has not practised for but we'll see how it goes.
Through all of this, he barely managed to do his homework every evening but his teacher has been very accomodating, giving us more time when we need it, not pushing him past his limits, letting him turn in some of the writing homework the following Monday and this has been the case from the beginning of the school year when the teacher voluntarily let me know that I could ask for more time whenever he needs it - that is such a comfortable feeling - to know that she will let him have it. At the same time, I have to be careful not to abuse that privilege and have him do the work whenever he can do it on time, which did happen the first two months of the school year until the projects got into a larger amount of writing.
One more good aspect of this past week was his starting with a social skills session with the school psychologist -it is with the intern but she is also good. He enjoyed the session, remembered to tell me about it and I hope this translates into various aspects of his interactions. This is the one area which is still my biggest concern - his interaction with his peers.
V continues to struggle in the area of Math - nowhere compared to even six months ago but the catch up seems a lot more daunting in this area. We just have to continue to take one step at a time and keep going.
Sunday, December 7, 2008
Fever
After having been fever-free for 2.5 years, V got a fever last night. Through the day, I knew something was wrong. He was ultra tired, cranky, couldn't explain why and it was a weekend as well. At night he had this weird smell in his mouth - this was something that happened through his bad days earlier. He was yawning away at 8:30 and we went to bed. He had a restless sleep and at one point when he seemed more restless than he should be, I checked him out and discovered a hot body. That immediately puts me on high alert. The last time he had a full blown seizure - not a head drop or absence or anything else - was when he had fever. So I went and got Tylenol, gave it to him, even though it meant waking him up in his sleep. That sure worked wonders - the fever came down, he slept peacefully for a few hours. After a few hours, the fever seemed to creep up again and towards 6:00 a.m., he was again restless. So I gave him another dose; that certainly helped but he didn't go back to sleep. He felt fine and was up and about.
A really close friend of mine visited with her husband and son, who is about the same age. The boys played together and that must have tired him out. We had to do a bit of holiday shopping and he was really tired during that time, so much so that I came back to the car with him while my husband and daughter finished the shopping. He then was fine the rest of the evening; throughout the day there was no sign of the fever returning. He slept off like a flash. I need to see what tomorrow has in store for school. Hoping for the best as always.
A really close friend of mine visited with her husband and son, who is about the same age. The boys played together and that must have tired him out. We had to do a bit of holiday shopping and he was really tired during that time, so much so that I came back to the car with him while my husband and daughter finished the shopping. He then was fine the rest of the evening; throughout the day there was no sign of the fever returning. He slept off like a flash. I need to see what tomorrow has in store for school. Hoping for the best as always.
Saturday, November 22, 2008
Ups and downs
The ups and downs continue even as V has been weaned off all medication. This past week he had a virus. Now, for several months, when he has caught a cold, the cold is not a running nose. He might wake up with a stuffed nose or he may blow his nose sometime through the day. He might cough a little. This week, however, was different.
Monday was a difficult day for him in school. It has been almost three months from the start of the school year. He has gone for the past six weeks without a single break through the day which is soooo very different from the past two years where he needed fairly frequent breaks, last year less frequently than the previous. Monday, he had to be given a break as also Tuesday. On Tuesday in addition to the break, he had a meltdown in school. I was at a loss, thinking maybe because he ate out more often than he normally does on a weekend, even though I monitor all the food he eats. Wednesday was his hardest day, having to work 1:1 with his aide through the day, and not with the class. On Wednesday evening, his cold started - bingo! It was not any food, but his body was trying to figure out this virus which had attacked. This was always the period I dreaded the most the past five years. The good part is that he didn't have any active seizures, but he did have two difficult nights - lots of jerking and restlessness, sensory issues going on. The poor boy - he didn't even know this was going on. The cold was so bad this time that he was blowing his nose almost non-stop and woke up on Thursday morning at 5:40 a.m.. I checked in with him about school and he replied, "No. I have library today and I wouldn't want to miss it."
Once the cold actually starts, he does better and sure enough, his day was way better. It is still- take one day at a time - almost - and this season can be the worst. Fortunately for us, his body has been good about repelling viruses. All those extra vitamins through his food can make a world of difference. Until the next time that it may hit this season, I am enjoying his good weekend...
Monday was a difficult day for him in school. It has been almost three months from the start of the school year. He has gone for the past six weeks without a single break through the day which is soooo very different from the past two years where he needed fairly frequent breaks, last year less frequently than the previous. Monday, he had to be given a break as also Tuesday. On Tuesday in addition to the break, he had a meltdown in school. I was at a loss, thinking maybe because he ate out more often than he normally does on a weekend, even though I monitor all the food he eats. Wednesday was his hardest day, having to work 1:1 with his aide through the day, and not with the class. On Wednesday evening, his cold started - bingo! It was not any food, but his body was trying to figure out this virus which had attacked. This was always the period I dreaded the most the past five years. The good part is that he didn't have any active seizures, but he did have two difficult nights - lots of jerking and restlessness, sensory issues going on. The poor boy - he didn't even know this was going on. The cold was so bad this time that he was blowing his nose almost non-stop and woke up on Thursday morning at 5:40 a.m.. I checked in with him about school and he replied, "No. I have library today and I wouldn't want to miss it."
Once the cold actually starts, he does better and sure enough, his day was way better. It is still- take one day at a time - almost - and this season can be the worst. Fortunately for us, his body has been good about repelling viruses. All those extra vitamins through his food can make a world of difference. Until the next time that it may hit this season, I am enjoying his good weekend...
Saturday, November 1, 2008
The next month
So, a whole month has gone by and more after the last medication was administered to V. He is doing just fine under the circumstances. His brain seems to be taking leaps in catching up with all of the deprivation so it seems. For example, he is obviously learning compound words in school. I had no idea till he asked me if journalism is a compound word and we talked about the differences between compound words and words with suffixes and prefixes. So, the day went on and then towards the end of the day we were watching something and then he suddenly goes well, boyfriend is a compound word and so is girlfriend. I mean things like this are miracles to say the least. Not only is he able to absorb what is being taught in school but also, he is able to retain the information, think about it actively, relate it to other things he is experiencing and connect. I mean, that is so wonderful, I would have never dreamed of it. These are small, simple pleasures that keep me going.
He loves school, his teacher this year is so very understanding of his needs and accomodations, it is absolutely wonderful. Not only do I not have to ask for anything, on her own, she realises and lets us know about assignments that he will need more time. He is really happy, is just so getting back to his old self. I mean, he was happy through his bad times but now, he just seems differently happy.
I still worry when he gets emotional or worked up because he used to work himself upto a frenzy so that he would get seizures. He was highly worked up last night and it took me over half an hour to calm him down, all along worried that he would work himself upto a frenzy. All along, I need make sure that I keep calm, that I don't show him that I am worked up, that I have a calm voice and hand, all along soothing him to ensure that he gets the right message. He does have to hold it up in school and that's why he tends to have more of these meltdowns at home which is kind of alright given that he can only do so much and physically he is exhausted by Friday.
R does show signs sometimes of jealousy, despite an effort on my part to try to stay fair. Every once in a while she needs a reminder that not everyone's brain is like hers and that there is some accommodation she needs to make for his differences. It is a high expectation of her and it does seem unfair sometimes when one sees other ten year olds who do not carry the same responsibility but then why should everybody undergo anything similar?
Meanwhile, life carries on. Diwali and Halloween just went by. Thanksgiving will be here soon.
He loves school, his teacher this year is so very understanding of his needs and accomodations, it is absolutely wonderful. Not only do I not have to ask for anything, on her own, she realises and lets us know about assignments that he will need more time. He is really happy, is just so getting back to his old self. I mean, he was happy through his bad times but now, he just seems differently happy.
I still worry when he gets emotional or worked up because he used to work himself upto a frenzy so that he would get seizures. He was highly worked up last night and it took me over half an hour to calm him down, all along worried that he would work himself upto a frenzy. All along, I need make sure that I keep calm, that I don't show him that I am worked up, that I have a calm voice and hand, all along soothing him to ensure that he gets the right message. He does have to hold it up in school and that's why he tends to have more of these meltdowns at home which is kind of alright given that he can only do so much and physically he is exhausted by Friday.
R does show signs sometimes of jealousy, despite an effort on my part to try to stay fair. Every once in a while she needs a reminder that not everyone's brain is like hers and that there is some accommodation she needs to make for his differences. It is a high expectation of her and it does seem unfair sometimes when one sees other ten year olds who do not carry the same responsibility but then why should everybody undergo anything similar?
Meanwhile, life carries on. Diwali and Halloween just went by. Thanksgiving will be here soon.
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