For those of you who do not know the complete Bloom boy story, I will catch you up before I go ahead with today's blog....all of my boys were adopted, and all of my boys were "typically developing" as far as I was aware at the time of their adoption. It wasn't until M was 15 months old that I realized hmmmmm something is just "off" here. Before then, I was in awe at my "amazing parenting abilities". He happily went to everyone, oohed and ahhed at everyone, was an easy baby etc..... Until he didnt babble, and never went through a "stranger anxiety" phase, he was the perfect baby, and I was happy living life as "the perfect mom".
I figured I had parented him so well that of course he wasnt afraid of people, that was because I did such a great job making his world feel safe. I figured he let anyone hold and comfort him because he was completely and totally secure that I was his mom, and therefore didn't need to act anxious because he wasn't anxious.
At around 15 months I realized there may be a problem and at 18 months he received special ed, speech, OT and PT. However, he was over the age of 3 before my parents, or others close to us recognized or agreed that he may be developing differently than other children. He was over 2 years old before he ever said anything close to mama or mom.....and he has never gone through those "typical" phases all kids go through no matter how amazing their parents are.
So I have always been a mom with my eyes wide open, and I have never missed a problem developmentally for D or M. However, receiving M's draft IEP from school yesterday still hit me like a punch in the stomach.
When my children were in preschool, I knew every step of their development, where they were in relation to their peers, and how they were gaining skills etc.... Now it is harder, I am not in touch with typical 8 year olds, because M has no friends and therefore we have no typical 8 year olds around for me to compare him to. We are around a lot of 5 and 6 year olds, and I am well aware that many of his skills are lower than their skills in different areas. However, being aware, and actually reading the facts on paper are 2 very different things.
M's attention and M's ability to focus are horrendous. He struggles in school across all areas. In some areas this year he is actually functioning lower than he was last year because he has been struggling behaviorally and has lost ground.
I know for the teacher's these things are not surprises. I konw in my heart of hearts that we have plateaud in some areas. However, it will never feel good, it will never be ok for me to read these things, and it will always break my heart.
I know in the upcoming week I will receive a similar report for D. I am more aware of what skills he is missing and where he struggles, but I konw it won't be any easier to read these things on paper in relation to him.
I have to go through the grieving process for the boys I thought I was adopting, and the reality of the boys I have adopted....there are no better boys out there, and absolutely positively these boys belong to me and were meant to be in my family and for that I am so thankful. I just wish their lives were a little easier. I wish there was a recipe book so I knew what would help them to grow as little people.
I wish they played with stuffed animals the way J does, I wish they had told me "no" when they were 3 like J does, I wish life for them was easier. I wish, I wish, I wish, and yet the reality is right there, in black and white on paper by the professionals.
Wednesday, February 24, 2010
Sunday, February 21, 2010
Stims and perseverations!
Ok anyone who knows a child with autism or an autism spectrum disorder can relate to this- a stim or a perseveration is basically the "thing" your child gets stuck on for a period of time. I am not talking about a brief period of time, and I am not talking about something that occupies your child for a little while....i am talking about that thing that is ALL ENCOMPASSING, that thing that OVERRIDES all else!
Right now both D and M have perseverations going on and both are about to DRIVE ME CRAZY. For M the question of the month is "is this a busy road?" I have tried to get him to define "busy road" I have tried to ask him to give me the answer. I have defined "busy road" for him....none of it does any good- it is a question he HAS to ask, and apparently a question I HAVE to answer at a minimum 100 times a day.
Now D's perseveration is moderately funny to me, but I think it is mostly because it is making M nuts- which is more funny because M is konwn for asking repetitive questions, so for him to get mad because someone else is doing it cracks me up!
But D's question of the day is "is it funny" asked about everything, and followed with a little high pitched chuckle. Unfortunatley, most of the time he asks the answer is NO! OF COURSE IT ISN'T FUNNY. Is a heart attack funny? Is hitting your funny bone funny? Of course it is not funny! But when he does that little chuckle and giggle, it becomes funny and so I laugh, thereby encouraging him to ask again!
We have survived 8 days of total togetherness! We have now cleaned the play room AND the family room and I cleaned up the dining room....however, if I have to hear "is this a busy road" or "is it funny" more than 10 more times each, I might really lose it!
Please, can I go back to work! Please can the boys go back to school- back to the structure and routine they love! Back to the world of other adults who can tend to their needs for a little while each day?
One more day...1 more day of togetherness and then we are back to routine for a month! And, I am sure as they get back on the bus on Monday morning, I will miss hanging out together for lazy mornings, and watching them play together and just being together the 4 of us....but I can say for certain, as M asks the bus driver if the road is busy....that will be something I DONT miss!
Right now both D and M have perseverations going on and both are about to DRIVE ME CRAZY. For M the question of the month is "is this a busy road?" I have tried to get him to define "busy road" I have tried to ask him to give me the answer. I have defined "busy road" for him....none of it does any good- it is a question he HAS to ask, and apparently a question I HAVE to answer at a minimum 100 times a day.
Now D's perseveration is moderately funny to me, but I think it is mostly because it is making M nuts- which is more funny because M is konwn for asking repetitive questions, so for him to get mad because someone else is doing it cracks me up!
But D's question of the day is "is it funny" asked about everything, and followed with a little high pitched chuckle. Unfortunatley, most of the time he asks the answer is NO! OF COURSE IT ISN'T FUNNY. Is a heart attack funny? Is hitting your funny bone funny? Of course it is not funny! But when he does that little chuckle and giggle, it becomes funny and so I laugh, thereby encouraging him to ask again!
We have survived 8 days of total togetherness! We have now cleaned the play room AND the family room and I cleaned up the dining room....however, if I have to hear "is this a busy road" or "is it funny" more than 10 more times each, I might really lose it!
Please, can I go back to work! Please can the boys go back to school- back to the structure and routine they love! Back to the world of other adults who can tend to their needs for a little while each day?
One more day...1 more day of togetherness and then we are back to routine for a month! And, I am sure as they get back on the bus on Monday morning, I will miss hanging out together for lazy mornings, and watching them play together and just being together the 4 of us....but I can say for certain, as M asks the bus driver if the road is busy....that will be something I DONT miss!
Thursday, February 18, 2010
Vacation week fun
As a single mom, often knowing that vacation week is coming is cause for concern. That means that 24/7 I am going to be ON. Unless I hire a babysitter, it will be me and the boys all day, everyday during break.
Over the past few years, my anxiety level for vacation weeks has not completely skyrocketed due to some good friends entering our lives, but as we headed into February vacation week, I was still moderately anxious.
See in Upstate NY the weather greatly impacts what you can do with 3 children. Assuming an endless amount of money, and the world is our oyster, but sadly our money has a limit, and so that has to be taken into account when planning for a week full of activity.
Thankfully one of our favorite programs, Project Link, was up and running this week. Project Link is sheer genuis- you take any children with special needs and their families and open up an indoor gymnastics studio complete with trampolines, balls, cars, trucks and an art room, and you have 2 hours of fun and entertainment. Add to it that this program is free and is held for 3 days during the week and you have one happy mom and 3 ecstatic little boys!
Additionally, this week we were lucky enough to get a little snow and also to have some decent weather so we have had 2 full afternoons of project link followed by sledding which creates the perfect recipe for exhausted little boys!
Now as I wrap up Wednesday night, we are in the home stretch and heading back towards routine. Tomorrow is the final day of Project Link and all of our good friends are bringing their children. So not only will the boys have a great time, but I will also get some quality mom time in! Then we end the day with a birthday party for one of D's little kindergarten friends!
I need to plan activities for Friday, Saturday and something calm to get us back into the routine for Sunday, and we can end this vacation week on a high! A trip to the library, maybe another day of sledding, and possibly a visit to an indoor play area and we will all head back to our routine and structure with good memories, and positive energy!
Over the past few years, my anxiety level for vacation weeks has not completely skyrocketed due to some good friends entering our lives, but as we headed into February vacation week, I was still moderately anxious.
See in Upstate NY the weather greatly impacts what you can do with 3 children. Assuming an endless amount of money, and the world is our oyster, but sadly our money has a limit, and so that has to be taken into account when planning for a week full of activity.
Thankfully one of our favorite programs, Project Link, was up and running this week. Project Link is sheer genuis- you take any children with special needs and their families and open up an indoor gymnastics studio complete with trampolines, balls, cars, trucks and an art room, and you have 2 hours of fun and entertainment. Add to it that this program is free and is held for 3 days during the week and you have one happy mom and 3 ecstatic little boys!
Additionally, this week we were lucky enough to get a little snow and also to have some decent weather so we have had 2 full afternoons of project link followed by sledding which creates the perfect recipe for exhausted little boys!
Now as I wrap up Wednesday night, we are in the home stretch and heading back towards routine. Tomorrow is the final day of Project Link and all of our good friends are bringing their children. So not only will the boys have a great time, but I will also get some quality mom time in! Then we end the day with a birthday party for one of D's little kindergarten friends!
I need to plan activities for Friday, Saturday and something calm to get us back into the routine for Sunday, and we can end this vacation week on a high! A trip to the library, maybe another day of sledding, and possibly a visit to an indoor play area and we will all head back to our routine and structure with good memories, and positive energy!
Monday, February 15, 2010
chocolate chip cookies
Sometimes my brilliance amazes even me! I needed the playroom cleaned- actually more than cleaned, i needed us to go through the toys. On Monday night we were at my parents house and the boys are able to play with the toys there, AND more importantly are able to put the toys away.
I am not sure what the malfunction is at our house- ok if I am being painfully honest, I could make a few guesses....
1. I am not an organized person, there I said it. I do not understand organization and I am too tired most of the time for organization.
2. I am never quite sure when is the right time for clean up.
If the kids have to clean up whenever they are done playing- then we would be cleaning up a lot...remember the boys have a 10 minute attention span on a good day- so often they go from playing, to watching tv, to playing music on the computer and back to playing....if we cleaned up each time we took a break from playing all we would be doing all day is "setting up to play".
So then when do we draw the line and make it clean up time? At the end of the day, we have 1.5 hours together and in that time we have to make dinner, eat dinner, clean up dinner and do homework and then on a good day we have time to play. I would rather take all of the playtime and let them PLAY rather then use half of the 15 minutes for clean up.
3. Clean up leads to fighting and stress and at the end of the day I am too tired for that.
So tonight....I stumbled upon it. I needed to go through the play room and according to M, the boys NEEDED to bake cookies.....so we made a deal. If they would clean, I mean REALLY clean, the playroom, then we would bake cookies.
So here we are, 3 garbage bags later, a positive experience cleaning the play room, AND 2 dozen chocolate chip cookies later....now all I am hoping is that when I wake up in the morning you can still tell that we spent almost an hour cleaning!
I am not sure what the malfunction is at our house- ok if I am being painfully honest, I could make a few guesses....
1. I am not an organized person, there I said it. I do not understand organization and I am too tired most of the time for organization.
2. I am never quite sure when is the right time for clean up.
If the kids have to clean up whenever they are done playing- then we would be cleaning up a lot...remember the boys have a 10 minute attention span on a good day- so often they go from playing, to watching tv, to playing music on the computer and back to playing....if we cleaned up each time we took a break from playing all we would be doing all day is "setting up to play".
So then when do we draw the line and make it clean up time? At the end of the day, we have 1.5 hours together and in that time we have to make dinner, eat dinner, clean up dinner and do homework and then on a good day we have time to play. I would rather take all of the playtime and let them PLAY rather then use half of the 15 minutes for clean up.
3. Clean up leads to fighting and stress and at the end of the day I am too tired for that.
So tonight....I stumbled upon it. I needed to go through the play room and according to M, the boys NEEDED to bake cookies.....so we made a deal. If they would clean, I mean REALLY clean, the playroom, then we would bake cookies.
So here we are, 3 garbage bags later, a positive experience cleaning the play room, AND 2 dozen chocolate chip cookies later....now all I am hoping is that when I wake up in the morning you can still tell that we spent almost an hour cleaning!
managing the evils of medication
M is taking a few different medications all with a different purpose...and I feel like recently they are working....he is sleeping at night. He is more at peace with himself, and seems happier. And most importantly, he is more redirectable- he is still having fits of anger and outbursts, but he can be calmed, and seems to have a few seconds between getting angry and acting out when i can still catch him and redirect him. Basically there are a few seconds where he and I can breathe and each change the outcome of his tantrum...that is GREAT.
However, every medication has a side effect, and right now one of his medications is making him eat like CRAZY.....I know growing boys need food, and I respect that he will likely eat more than I could ever imagine. However, his eating is unhealthy and out of control- he eats carbs from morning to night. Today by 10:00 he had 2 bowls of cereal, 5 pancakes and was still hungry. Then he ate 6 double stuffed oreos that he got from the neighbor, snuck some cheez its, and ate jelly by the spoonful while I took a shower.
Now tomorrow we are going back to the Psychiatrist and I have to balance what I tell her with what I think he needs. See if you havent been down this road before, you might say, "tell the doctor exactly what is happening, and she will help to figure out what he needs". However, we only have 10 minutes with the doctor. That is not nearly enough time to explain what is needed and what has gone on since our last visit.
So my struggle tonight is that I want the doctor to help to wean M off of his daytime doses of clonodine. I don't think he needs them and I think the Seraquel is calming him more appropriately. In addition, the school would really like him to be able to attend and focus more. So some form of medication that can help with this would be fabulous. Finally, I need to see what we can do to decrease the seraquel so he stops eating me out of house and home but balance that with him having enough to remain calm and redirectable.....
Balance all of this with my desire to have an 8 year old son who is not taking heavy duty medications, who doesn't need them because he is mentally healthy and safe to be around...and this will be an all important 10 minutes. It is up to me to figure out how we will all get through the next month in as positive a way as possible and for M that means giving him the medicaiton he needs to succeed without making him tired or irratable....I so wish he didnt need these medications to function, but I also thank god daily that these medications allow him to be happy, and smile and to feel good about himself.
However, every medication has a side effect, and right now one of his medications is making him eat like CRAZY.....I know growing boys need food, and I respect that he will likely eat more than I could ever imagine. However, his eating is unhealthy and out of control- he eats carbs from morning to night. Today by 10:00 he had 2 bowls of cereal, 5 pancakes and was still hungry. Then he ate 6 double stuffed oreos that he got from the neighbor, snuck some cheez its, and ate jelly by the spoonful while I took a shower.
Now tomorrow we are going back to the Psychiatrist and I have to balance what I tell her with what I think he needs. See if you havent been down this road before, you might say, "tell the doctor exactly what is happening, and she will help to figure out what he needs". However, we only have 10 minutes with the doctor. That is not nearly enough time to explain what is needed and what has gone on since our last visit.
So my struggle tonight is that I want the doctor to help to wean M off of his daytime doses of clonodine. I don't think he needs them and I think the Seraquel is calming him more appropriately. In addition, the school would really like him to be able to attend and focus more. So some form of medication that can help with this would be fabulous. Finally, I need to see what we can do to decrease the seraquel so he stops eating me out of house and home but balance that with him having enough to remain calm and redirectable.....
Balance all of this with my desire to have an 8 year old son who is not taking heavy duty medications, who doesn't need them because he is mentally healthy and safe to be around...and this will be an all important 10 minutes. It is up to me to figure out how we will all get through the next month in as positive a way as possible and for M that means giving him the medicaiton he needs to succeed without making him tired or irratable....I so wish he didnt need these medications to function, but I also thank god daily that these medications allow him to be happy, and smile and to feel good about himself.
Friday, February 12, 2010
what a week
Let me set the stage for you....
This is the last week before school vacation. I have exactly 5 days to get a ton of work done- registration for next year has started at my nursery school and we have 2 huge fundraisers that both are occurring as soon as we get back from vacation!
Needless to say this is a week that I HAVE to dedicate to WORK.
Somehow sensing my intense need for focus at work, God is again at work seeing how much stress he can throw my way before I throw in the towel.
Monday and Tuesday D comes home from school without earning "treasure". Now Treasure is something I detest- these are kids in a self contained special education classroom. My biggest hope for my son is that he will learn to do right because it feels good and makes others happy. I will be horribly distraught if my son learns to do right because some jackass is going to give him a 10 cent piece of crap. However, since the system in his classroom is that he will earn treasure daily for having proper behavior, it breaks my heart that the only time all year he mentions treasure to me is on Monday, when he doesnt get treasure.
Now if you read my previous blog, D has had a medication change, I am seeing all kinds of intense impulsive challenging behavior at home...this is the pattern for D- before a period of seizures, we see a behavior change. I have told his teaching team over and over and over again that this is the pattern....do I get a phone call? NO. Do they wonder....hmmmm could something be wrong with D? NO. Do they notice that his language is slower his processing time increased? NO....so needless to say, Monday and Tuesday go by and the little guy does not earn treasure.
Fast forward to Wed morning- we are now midweek in a stressful time- I am intensely aware that the end of the week is near and I want to be able to be on vacation and not think about work. Suddenly at 11:00 the phone rings and it is the school nurse- D has had 2 seizures.....I rush out of work to go see my little guy.
The only thing more pathetic than my guy having a seizure is my guy having a seizure without me there. I brought him home and he spent the rest of the day with my folks, after I spent an hour holding and loving him.He looked frail and scared all day long. At 3:00 I take D and J to the ENT for a check up- J's ear wax is so impacted that it takes over 30 minutes to vaccuum it all out- a nasty, disgusting process.....D is given a nose spray that will hopefully decrease the number of times he has a sinus infection and we get our stickers and head out the door.
No sooner are we in the car than I see that I have now missed a call from M's teacher. Luckily I check my message and it is enough to simply cause worry and concern for the night- nothing like a sleepless night after a crazy day like today!
Thursday AM I get in touch with M's teacher- basically she was calling to tell me that he seems super tired- thank you, he is very tired. The options are tired or overly rambunctious- no one was happy with the out of control, rambunctious M- even M was unhappy. Given that, our other choice is medication that help to calm him, but calming meds often make people tired! I note her concern, and promise to talk to the psychiatrist. I pull into the parking lot at school to drop off J and the cell phone rings- D has had another seizure on the bus and I need to come to school again.
Now let me please be very, very clear. If D is having seizures I want to always know about them. I want to most likely come and be with him, HOWEVER I cannot always take him home from school. Again, single mom, 3 kids, 2 with special needs. If I am not working, I am not being paid. If I am not being paid, I am not feeding the children....I have to work. D is a child with epilepsy. Children with epilepsy have seizures. After his seizures D usually rests for a while and returns to normal activities. So I rush back to his school again....my heart in my throat very worried about how he will be. Will he be able to walk? talk? Will he have more seizures?
I walk into the nurses office and he is happy, not easily communicating, but he is loooking at books and is very aware....so now comes the tough question- can he stay at school? Thankfully, after I agreed to hang out at school for another 15 minutes, they said he could go to class and see how he does.....and even better, D has not had another seizure since Thursday!
Today, Friday, I went with the entire school to a show, and then returned to school at noon to begin to work on the millions of tasks that had to be completed before vacation!
Thankfully, they are finished, the loose ends are tied up and we are on VACATION! Phew! A stressful, crazy week is over...now hopefully onto some rest and relaxation and recharging all of our batteries~!
This is the last week before school vacation. I have exactly 5 days to get a ton of work done- registration for next year has started at my nursery school and we have 2 huge fundraisers that both are occurring as soon as we get back from vacation!
Needless to say this is a week that I HAVE to dedicate to WORK.
Somehow sensing my intense need for focus at work, God is again at work seeing how much stress he can throw my way before I throw in the towel.
Monday and Tuesday D comes home from school without earning "treasure". Now Treasure is something I detest- these are kids in a self contained special education classroom. My biggest hope for my son is that he will learn to do right because it feels good and makes others happy. I will be horribly distraught if my son learns to do right because some jackass is going to give him a 10 cent piece of crap. However, since the system in his classroom is that he will earn treasure daily for having proper behavior, it breaks my heart that the only time all year he mentions treasure to me is on Monday, when he doesnt get treasure.
Now if you read my previous blog, D has had a medication change, I am seeing all kinds of intense impulsive challenging behavior at home...this is the pattern for D- before a period of seizures, we see a behavior change. I have told his teaching team over and over and over again that this is the pattern....do I get a phone call? NO. Do they wonder....hmmmm could something be wrong with D? NO. Do they notice that his language is slower his processing time increased? NO....so needless to say, Monday and Tuesday go by and the little guy does not earn treasure.
Fast forward to Wed morning- we are now midweek in a stressful time- I am intensely aware that the end of the week is near and I want to be able to be on vacation and not think about work. Suddenly at 11:00 the phone rings and it is the school nurse- D has had 2 seizures.....I rush out of work to go see my little guy.
The only thing more pathetic than my guy having a seizure is my guy having a seizure without me there. I brought him home and he spent the rest of the day with my folks, after I spent an hour holding and loving him.He looked frail and scared all day long. At 3:00 I take D and J to the ENT for a check up- J's ear wax is so impacted that it takes over 30 minutes to vaccuum it all out- a nasty, disgusting process.....D is given a nose spray that will hopefully decrease the number of times he has a sinus infection and we get our stickers and head out the door.
No sooner are we in the car than I see that I have now missed a call from M's teacher. Luckily I check my message and it is enough to simply cause worry and concern for the night- nothing like a sleepless night after a crazy day like today!
Thursday AM I get in touch with M's teacher- basically she was calling to tell me that he seems super tired- thank you, he is very tired. The options are tired or overly rambunctious- no one was happy with the out of control, rambunctious M- even M was unhappy. Given that, our other choice is medication that help to calm him, but calming meds often make people tired! I note her concern, and promise to talk to the psychiatrist. I pull into the parking lot at school to drop off J and the cell phone rings- D has had another seizure on the bus and I need to come to school again.
Now let me please be very, very clear. If D is having seizures I want to always know about them. I want to most likely come and be with him, HOWEVER I cannot always take him home from school. Again, single mom, 3 kids, 2 with special needs. If I am not working, I am not being paid. If I am not being paid, I am not feeding the children....I have to work. D is a child with epilepsy. Children with epilepsy have seizures. After his seizures D usually rests for a while and returns to normal activities. So I rush back to his school again....my heart in my throat very worried about how he will be. Will he be able to walk? talk? Will he have more seizures?
I walk into the nurses office and he is happy, not easily communicating, but he is loooking at books and is very aware....so now comes the tough question- can he stay at school? Thankfully, after I agreed to hang out at school for another 15 minutes, they said he could go to class and see how he does.....and even better, D has not had another seizure since Thursday!
Today, Friday, I went with the entire school to a show, and then returned to school at noon to begin to work on the millions of tasks that had to be completed before vacation!
Thankfully, they are finished, the loose ends are tied up and we are on VACATION! Phew! A stressful, crazy week is over...now hopefully onto some rest and relaxation and recharging all of our batteries~!
Tuesday, February 9, 2010
You'll need to make an appointment to see the doctor
Let me start by stating that I completely and totally understand that doctors do not get paid for returning phone calls. Let me also state that in my job as a nursery school director- NEITHER DO I. I also don't make anywhere near the amount of money of any doctor- however, I do know and appreciate that part of having happy customers is ANSWERING THEIR PHONE CALLS!
I only call the doctor when I really believe that the problem can be solved over the telephone. I am also completely open to making an appointment to see the doctor if need be, AFTER I speak to the doctor on the phone. So, when I called David's neurologist this morning to ask about increasing his Topomax dose, the last thing I wanted to hear was that we needed to make an appointment.
Just a few short weeks ago, when I called regarding increasing David's medication dose because he was losing the use of his left hand, I was told we had to come in to see the doctor. As much as I begrudged that visit, I went without a fuss because I knew what the doctor was thinking----5 year old boy, losing the use of his hand equals EMERGENCY. However I also knew that this was a symptom of David's seizures, we had been down this road, so to me this was not an emergency and actually just a frustrating symptom- truth be told to me this is one of the more minor symptoms because it is easily visible, does not bother David and does not impact him behaviorally.
However the symptoms of this weekend were INTENSE. It was at the last appointment that the doctor decided we needed to decrease D's Topomax dose, and he really did not want to discuss this, but rather as the man who writes the script basically issued an edict- we would increase Depakote and decrease Topomax. While I understand that this man went to medical school, and I am completely willing to acknowledge that I did NOT go to medical school, I am also willing to let everyone know that I am currently enrolled in the school of D. I cannot tell you how I konw him as intimately as I do, it often surprises me how in tune with him I am, but when I place a bet on D I am correct 99% of the time. So this time when I was told to decrease his Topomax dose I just really did not want to do it. I waited before decreasing it, I hemmed and hawed and tried to find a way to express to the doctor why I felt this was a bad idea...unfortunately I finally determined we would have to lower the dose and see what happened.
Well I am here to tell you that lowering his dose WAS NOT A GOOD IDEA. For the first time in a long time D's behavior was a chalenge....he struggled at school, he struggled at home, and he struggled with his babysitter- so this morning, I called the Dr and after being placed on hold I was told we needed to come in to see the doctor.
Now, let me try to explain- the doctor is a half hour away from my job, D's school is 15 minutes away from my job in the opposite direction, so to get to the doctor would take at least half a day by the time I pick D up we get to the doctor, see the doctor and D is returned to school. Why am I wasting a half a day? To ask the doctor that given the symptoms I am seeing- seizures, increased negative behavior, decreased ability to express himself, and increased impulsivity- if we can please increase the Topomax. The chance of D having a seizure for the doctor are slim, so essentially the doctor is going to have to believe what I am telling him in order to make his medical decision regarding the medicine. So the only thing to be gained by us going to the doctor is money for the doctor and a loss of time at work for me. So, again I ask can I PLEASE leave a message for the doctor?
Sensing my frustration, but obviously distraught that I am being so insistent, the secretary agrees taht she will take my message, but stresses it is highly unlikely that I will get a return phone call. Luckily, today the gods are smiling on me, not only do I get a return phone call, BUT the doctor has a great idea- he increases the TOPOMAX dosage!
I am so glad that I was able to find such an amazing doctor- now if you don't tell him, and I won't tell him.....it really was my idea! but I will allow him to believe it was his and he is a genius!
I only call the doctor when I really believe that the problem can be solved over the telephone. I am also completely open to making an appointment to see the doctor if need be, AFTER I speak to the doctor on the phone. So, when I called David's neurologist this morning to ask about increasing his Topomax dose, the last thing I wanted to hear was that we needed to make an appointment.
Just a few short weeks ago, when I called regarding increasing David's medication dose because he was losing the use of his left hand, I was told we had to come in to see the doctor. As much as I begrudged that visit, I went without a fuss because I knew what the doctor was thinking----5 year old boy, losing the use of his hand equals EMERGENCY. However I also knew that this was a symptom of David's seizures, we had been down this road, so to me this was not an emergency and actually just a frustrating symptom- truth be told to me this is one of the more minor symptoms because it is easily visible, does not bother David and does not impact him behaviorally.
However the symptoms of this weekend were INTENSE. It was at the last appointment that the doctor decided we needed to decrease D's Topomax dose, and he really did not want to discuss this, but rather as the man who writes the script basically issued an edict- we would increase Depakote and decrease Topomax. While I understand that this man went to medical school, and I am completely willing to acknowledge that I did NOT go to medical school, I am also willing to let everyone know that I am currently enrolled in the school of D. I cannot tell you how I konw him as intimately as I do, it often surprises me how in tune with him I am, but when I place a bet on D I am correct 99% of the time. So this time when I was told to decrease his Topomax dose I just really did not want to do it. I waited before decreasing it, I hemmed and hawed and tried to find a way to express to the doctor why I felt this was a bad idea...unfortunately I finally determined we would have to lower the dose and see what happened.
Well I am here to tell you that lowering his dose WAS NOT A GOOD IDEA. For the first time in a long time D's behavior was a chalenge....he struggled at school, he struggled at home, and he struggled with his babysitter- so this morning, I called the Dr and after being placed on hold I was told we needed to come in to see the doctor.
Now, let me try to explain- the doctor is a half hour away from my job, D's school is 15 minutes away from my job in the opposite direction, so to get to the doctor would take at least half a day by the time I pick D up we get to the doctor, see the doctor and D is returned to school. Why am I wasting a half a day? To ask the doctor that given the symptoms I am seeing- seizures, increased negative behavior, decreased ability to express himself, and increased impulsivity- if we can please increase the Topomax. The chance of D having a seizure for the doctor are slim, so essentially the doctor is going to have to believe what I am telling him in order to make his medical decision regarding the medicine. So the only thing to be gained by us going to the doctor is money for the doctor and a loss of time at work for me. So, again I ask can I PLEASE leave a message for the doctor?
Sensing my frustration, but obviously distraught that I am being so insistent, the secretary agrees taht she will take my message, but stresses it is highly unlikely that I will get a return phone call. Luckily, today the gods are smiling on me, not only do I get a return phone call, BUT the doctor has a great idea- he increases the TOPOMAX dosage!
I am so glad that I was able to find such an amazing doctor- now if you don't tell him, and I won't tell him.....it really was my idea! but I will allow him to believe it was his and he is a genius!
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