I didn't realise that I hadn't posted in three months. During these three months, there was one big change that transpired both for V and me. In the summer he said to me, I will sleep by myself when I get to third grade. Come August, he was telling me, I want to sleep on my own. Now, my mother was visiting and being a three bedroom house, she was in V's room as she always does; so I explained to him how he couldn't sleep there as it would be disturbing both to him and to his grandmother. So he said to me, he was ok if I kept a mattress down in my room. So I got the mattress organized along with a fan (he has to have the room really cold in order to sleep soundly but not so cold that he will shiver). So, the first night, he woke up really early in the morning but continued to sleep in his bed. It took about two nights before he settled in completely.
About six weeks ago, my mother left. V had decided that when she leaves, he wanted to sleep by himself in his room. This took a great deal of independence and courage on his part as well as to let go on my part as I used to be paranoid about the nights. It meant that I would have to let him be no matter what. Well, when he transitioned to his room, it again took a couple of nights before he settled in. After those two nights, he started sleeping in really well. I figured out the right angle of the fan, the bed, the stuffed toys, all the factors that might impact the quality of his sleep; he has been extremely excited about being on his own, has been spending time alone in his room; in short doing what most kids would have done independently years earlier.
I imagine I am sleeping better too as a result as I don't awaken at his every movement or sound. I contemplated buying a monitor to check on his sounds through the night and decided that I had to let go - he didn't really need it and it might actually create a problem where none exists.
Last night, with the long Thanksgiving break and R spending the night at her friend's house, while reading aloud to V before bed, he asked if just this one night he could sleep with me and my husband. I was impressed that he had never asked to do so in three months and I said that was fine. He is ready to go back to his room today after that one night's break just to reassure himself that his mother is around and will be there for him. That is normally my good night message to him - good night, sleep tight, don't let the bugs bite; I love you; relax because mama is going to be there for you, no matter what - she is not going anywhere.
Saturday, November 28, 2009
Friday, September 4, 2009
Sick again
So, its never fun when a child is sick - only a mom knows what she goes through - it is always hard to focus on anything else. And so it has always been with me and the kids if and when they get sick. I have been relatively lucky with the older one and younger also has a strong immune system, despite the seizures and the other issues. The other day he fell sick - my heart beat almost stops even now when he is sick - I am not as paranoid is what I would like to believe - but two nights ago when he threw up about 8 times, I was on tenterhooks - I am still just relieved that nothing else happened. There was no fever, nothing else - but he just kept throwing up and when it stopped at about 1:30 - just like from about 10 pm - I couldn't sleep because I kept thinking - he is now going to throw up again. It was a nightmare - I guess making up for all of those healthy days he has seen the past several months.
In any case, God is good, all's well with the world and he is hale and hearty again - yelling and screaming and as normal as he can possibly be.
It is obviously a challenge during his throwing up phases - he is anyway on a restricted diet, combined with the throwing up - what can he eat when ok? So when he awoke the only two things he was allowed was apple and banana. Two hours thereafter, when he was still doing fine, he was allowed his cereal, thereafter salad and yogurt, thereafter his nuts.
I am truly grateful everything was shortlived and I can go back to thinking that this phase never happened at all.
In any case, God is good, all's well with the world and he is hale and hearty again - yelling and screaming and as normal as he can possibly be.
It is obviously a challenge during his throwing up phases - he is anyway on a restricted diet, combined with the throwing up - what can he eat when ok? So when he awoke the only two things he was allowed was apple and banana. Two hours thereafter, when he was still doing fine, he was allowed his cereal, thereafter salad and yogurt, thereafter his nuts.
I am truly grateful everything was shortlived and I can go back to thinking that this phase never happened at all.
Monday, July 27, 2009
Fever and tantrums
During this past month when we were travelling, I was lucky in that both children remained healthy. Right at the end of the trip, both the kids fell sick, one after the other, with V being the first. I am still very paranoid when he falls sick not knowing what to expect. However, this time, his fever was under control - lasted one day and there were no repercussions at all. I would use Tylenol when I felt his fever come back and it would disappear sooner than later and he would be fine. For this I am more than grateful. Also, touch wood, he is inherently healthy and bounced back the next day.
V has been having more than his share of tantrums. I am not sure whether it is because of all the changes and his routine change or because of the fact that he did not like the bananas while travelling and barely ate them - just one seller whose bananas he liked and would eat one a day. The fact is that I think this is an issue and needs to be addressed and I will check to see what the best approach would be. Yelling is obviously not the right way but reasoning during those periods cannot happen because he is in a non-listening mode. Basically, this makes me even more convinced that V needs a really rigid diet and routine and slight deviations can cause problems.
V has been having more than his share of tantrums. I am not sure whether it is because of all the changes and his routine change or because of the fact that he did not like the bananas while travelling and barely ate them - just one seller whose bananas he liked and would eat one a day. The fact is that I think this is an issue and needs to be addressed and I will check to see what the best approach would be. Yelling is obviously not the right way but reasoning during those periods cannot happen because he is in a non-listening mode. Basically, this makes me even more convinced that V needs a really rigid diet and routine and slight deviations can cause problems.
How long?
I have become rather irratic about posting regular blog entries. I think the last summer was sort of to get it off my chest and to log my experience so that it truly would help someone - even if it helped one person I would be relieved. Since then, the updates have been infrequent and I need to get myself more disciplined on that front.
We recently travelled to many places - in and out of the country. Touch wood - nothing seems to have changed in his health other than him having lost some weight which is fine as long as he stays active and healthy.
After being disillusioned with the neurologists, particularly the one we had been seeing, I just take V for his annual checkups to his pediatrician whom I hold in very high regard for several reasons. To say that she has been pleased with his development is an understatement. She has not recommended any changes for him, whether in terms of diet, academics, anything. I frequently get asked the question - how long should V's diet continue? To be honest, just as with everything else that I have experienced with him, it is a day to day situation. Not only do I not have an answer to this question, nobody does.
Some say, seizure free for at least two years with the diet before weaning - I weaned him off medication the month after he was seizure free, I was so frustrated with the side effects. Having to experience what he is going through 24x7 is very different from someone seeing him for a short period of time and trying to evaluate what's going on with him is what I have realised.
Some say, if three years, others have other opinions. In short, no one doctor or person with experience has any one common answer. It all depends upon how the child is reacting to different things. In June, right before V's school closed, he had whipped cream with bananas for breakfast at a parent event. That day, his teacher told me, it was really hard for him to stay focused and he was very fidgety. I know exactly what she meant - that is how he used to be every single day in preschool - something his language therapist had noticed when nobody else had. This basically means, even a slight increase in sugar is not something his body can take. So I am not even going to try going down that path. Do I think he will be able to eat the same meal as any of us? I have great confidence and belief that he can. The only question is when to which I do not have an answer. I also don't think the answer is important and to have him on a full carb diet is required as long as he continues to remain not only seizure free but also is able to control his behaviour pattern and has a good night's sleep.
We recently travelled to many places - in and out of the country. Touch wood - nothing seems to have changed in his health other than him having lost some weight which is fine as long as he stays active and healthy.
After being disillusioned with the neurologists, particularly the one we had been seeing, I just take V for his annual checkups to his pediatrician whom I hold in very high regard for several reasons. To say that she has been pleased with his development is an understatement. She has not recommended any changes for him, whether in terms of diet, academics, anything. I frequently get asked the question - how long should V's diet continue? To be honest, just as with everything else that I have experienced with him, it is a day to day situation. Not only do I not have an answer to this question, nobody does.
Some say, seizure free for at least two years with the diet before weaning - I weaned him off medication the month after he was seizure free, I was so frustrated with the side effects. Having to experience what he is going through 24x7 is very different from someone seeing him for a short period of time and trying to evaluate what's going on with him is what I have realised.
Some say, if three years, others have other opinions. In short, no one doctor or person with experience has any one common answer. It all depends upon how the child is reacting to different things. In June, right before V's school closed, he had whipped cream with bananas for breakfast at a parent event. That day, his teacher told me, it was really hard for him to stay focused and he was very fidgety. I know exactly what she meant - that is how he used to be every single day in preschool - something his language therapist had noticed when nobody else had. This basically means, even a slight increase in sugar is not something his body can take. So I am not even going to try going down that path. Do I think he will be able to eat the same meal as any of us? I have great confidence and belief that he can. The only question is when to which I do not have an answer. I also don't think the answer is important and to have him on a full carb diet is required as long as he continues to remain not only seizure free but also is able to control his behaviour pattern and has a good night's sleep.
Tuesday, March 24, 2009
Change in food, other updates
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.
- 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 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.
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