I met with Sam's case manager and teachers last week. He needs a re-evaluation for primary school. His speech therapist, who I love, has been testing the FM system with him. SHe feels it is not hleping and, in fact, might be making things worse for him. I am not sure how to react. I don't feel that a coulel of weeks is enough time to evaluate something like that but the loaner is only available for a month. I am not sure whether to argue about this. I was so sure it would help and it is hard to accept that I might be wrong. But, I have faith in this speech therapist so I think on this issue, I am going to defer to her and not make a stink.
This is a hard time of year for a few reasons. As the weather warms up, we get the pleasure of going outside but along with that come feelings of intense grief and jealousy (at least for me). It is hard to watch the neighbors standing outside chatting while their kids ride bikes, play ball, and/or chase each other. I used to be out there with them. We can't do that anymore. Sam would run away, eat someone's plants and generally get in trouble if we tried. So we stay in the backyard. We are lucky that we have been able to make the yard a usable space. We have a swingset, trampoline and a deck so it is a nice place to play. From our backyard I can see the local park. It is little league season. Sam can't play. He doesn't care or even know what he is missing but it makes me sadder than you can possibly imagine. I know that I am griving for myself more than for Sam - like I said, it doesn't matter to him. I am sad that he can't understand or enjoy a sport, I am sad that he can't make friends or be part of a team and I am sad that I can't bond with the other moms. It is very lonely.
I try to get us out of the house as much as possible when the weather is nice so we go to fenced in playgrounds in nearby towns. I have to picked fenced in places because if Sam takes off, I ca't leave Maya to tke off after him. People tend to stare at Sam. I don't blame them. We are born with the habit of tuning in to what is different. No one has ever said anything hurtful. I guess I am lucky. Sam tends to put sticks in his mouth at the park. I try to bring him nice clean straws to substitute. SOme parent will usually signal to me and tell me "Did you know he has something in his mouth?" I know they mean well but yes, I know. If I could change it I would. Kids often get a little freaked out by Sam's hooting noises and they often very loudly yell to mom, "Why is he doing that?" Again, I don't blame them, they are just being kids. Hopefully their parents will use it as a teachable moment. As Sam gets bigger he is more and more conspicuous
No real news on the medication. I don't see huge changes at home - a bit more intense eye contact. School reports changes (and I didn't tell them about the new med at first). They feel is concentration has been better since we started a few weeks ago. We will talk it over with the neurologist in a couple of weeks.
Sam will be five soon. When we entered this world of Autism, I thought we would be considering mainstreaming by now. We are so far from that possibility. Like I said- grief.
Wednesday, April 7, 2010
Saturday, March 13, 2010
Judge Not . . . . and an FM system
Judge Not
We recently completed Sam's MRI and it came back normal. It was nice to know that there are no obvious structural problems that will prevent Sam from developing.
The anti-seizure med has yielded unclear results. Sam seems to be making more direct and sustained eye-contact. His receptive language seems to have improved. Just yesterday he got upset that there was a hole in one of his socks so I told him to take them off and throw them away. He did it! That was huge since it was a multi-step process. His mood seems to be better as well. Since the gains are not dramatic, it is not clear whether the gains are due to the med or just development.
The neurologist has put Sam on an ultra-low dose of med number 2. I have been felt tremendous internal conflict over trying this medication. If you asked me a year ago about putting Sam on meds, I would have said certainly not - it would be a last resort. I have recently met a number of families with autistic children who have seen great gains on very low doses of medications. Many have mainstreamed completely by 10. The possibilities are seductive.
BUT, there is such a stigma attached to putting your child on certain medications. It is funny how no one says anything if your child is on asthma medication or allergy pills but as soon as it is for a learning or developmental disability, the judgements begin. Everytime I talk to someone about what is going on with Sam I feel like I have to make very clear that medication is something we are turing to after trying everything else - diets, supplement and tons of behavioral and speech therapy. Seriously, I feel like I have to justify the decisions I make as a parent - to people who don't have a clue what it means to parent a nearly non-verbal child with serious learning issues. I even felt guilty giving Sam Melatonin, a natural supplement, when I realized that he and I couldn't continue to function without sleep. I know that, as a society, we over-medicate. But I have tried not to let this societal truth affect my individual decision making process.
I do not move in this direction lightly or without thorough research. We are not giving up on other therapies but we have to look at Sam's quality of life. Obviously if he has a negative reaction to medication we will take him off of it but if will allow him to "tune in" and learn then he deserves that chance. We, also, deserve that chance. I accept that my life is now dedicated to being his caretaker but if a medication can make it safe for me to take Sam out in public now that he is outgrowing strollers and shopping carts then that is a good thing.
So, this is what we are trying now. I am going to try my best to ignore the slow nods and cautious questions that seem to occur when people are "shocked" at the idea of giving a child medication.
FM System
An additional therapy we are trying is an FM system Sam will try at school. It was recommened to me by another family with an autistic som who recently mainstreamed. Sam will wear a set of headphones and his teacher or aide, whoever he is woring with, will wear a mic so that background noise is filtered out and he can focus on the person working with him. Sam already wears headphones at home for "listening therapy" so that part won't be a problem. I am interested to see how he will respond the the teacher's voice. I brought up the idea to his speech therapist since she will need to oversee it and at first she felt he was too young - but she couldn't tell me why age matters for this type of modification. She spoke to the director and Sam's case manager and they both thought it was a good idea to try. A vendor is sending a sample for a 30 day trial. If we see any benefits the district will buy it for Sam to use at school. Hopefully it will arrive in the next week and we can find out if it helps.
We recently completed Sam's MRI and it came back normal. It was nice to know that there are no obvious structural problems that will prevent Sam from developing.
The anti-seizure med has yielded unclear results. Sam seems to be making more direct and sustained eye-contact. His receptive language seems to have improved. Just yesterday he got upset that there was a hole in one of his socks so I told him to take them off and throw them away. He did it! That was huge since it was a multi-step process. His mood seems to be better as well. Since the gains are not dramatic, it is not clear whether the gains are due to the med or just development.
The neurologist has put Sam on an ultra-low dose of med number 2. I have been felt tremendous internal conflict over trying this medication. If you asked me a year ago about putting Sam on meds, I would have said certainly not - it would be a last resort. I have recently met a number of families with autistic children who have seen great gains on very low doses of medications. Many have mainstreamed completely by 10. The possibilities are seductive.
BUT, there is such a stigma attached to putting your child on certain medications. It is funny how no one says anything if your child is on asthma medication or allergy pills but as soon as it is for a learning or developmental disability, the judgements begin. Everytime I talk to someone about what is going on with Sam I feel like I have to make very clear that medication is something we are turing to after trying everything else - diets, supplement and tons of behavioral and speech therapy. Seriously, I feel like I have to justify the decisions I make as a parent - to people who don't have a clue what it means to parent a nearly non-verbal child with serious learning issues. I even felt guilty giving Sam Melatonin, a natural supplement, when I realized that he and I couldn't continue to function without sleep. I know that, as a society, we over-medicate. But I have tried not to let this societal truth affect my individual decision making process.
I do not move in this direction lightly or without thorough research. We are not giving up on other therapies but we have to look at Sam's quality of life. Obviously if he has a negative reaction to medication we will take him off of it but if will allow him to "tune in" and learn then he deserves that chance. We, also, deserve that chance. I accept that my life is now dedicated to being his caretaker but if a medication can make it safe for me to take Sam out in public now that he is outgrowing strollers and shopping carts then that is a good thing.
So, this is what we are trying now. I am going to try my best to ignore the slow nods and cautious questions that seem to occur when people are "shocked" at the idea of giving a child medication.
FM System
An additional therapy we are trying is an FM system Sam will try at school. It was recommened to me by another family with an autistic som who recently mainstreamed. Sam will wear a set of headphones and his teacher or aide, whoever he is woring with, will wear a mic so that background noise is filtered out and he can focus on the person working with him. Sam already wears headphones at home for "listening therapy" so that part won't be a problem. I am interested to see how he will respond the the teacher's voice. I brought up the idea to his speech therapist since she will need to oversee it and at first she felt he was too young - but she couldn't tell me why age matters for this type of modification. She spoke to the director and Sam's case manager and they both thought it was a good idea to try. A vendor is sending a sample for a 30 day trial. If we see any benefits the district will buy it for Sam to use at school. Hopefully it will arrive in the next week and we can find out if it helps.
Tuesday, January 19, 2010
Abnormal EEG
It took a couple of weeks and many phone calls to get Sam's EEG report. The neurologist, as soon as she got it from the hospital, left me a voice mail message telling me to make an appointment as soon as possible. I think most people expected me to be upset by this. I really wasn't. Look at it this way - Sam is profoundly disabled. This test was either going to come back normal, leaving us exactly where we were before, or abnormal, giving us more to investigate and possibly an action plan. Sam is still very disabled but with the abnormal result and an action plan, at least there is the hope of at least a small amount of improvement.
A certain percentage of the typical population gets abnormal EEG results even if there are no true seizures occuring. A certain percentage of autistic people will also get abnormal results with no real seizure but for autistics, the chance is higher that seizures are occuring. The neurologist wanted to do a video EEG to get more information as to whether we are looking at a seizure disorder but since that involve sticking things to his head and making him stay in a bed for 48 hours, we detemrined that such a test is next to impossible.
The other option, the one we are persuing, is to give Sam a low dose of an anti-seizure med to see if he shows improvement. If he does we move forward. If he doesn't we re-think our plan.
So that is where we are.
If this medication helps Sam I will be incredibly happy. I will also be frustrated. You see, I mentioned concerns about seizures to a number of doctors because Sam had these spasms as a baby that made him rake his face during his sleep and he showed some strange eye movements. It seems like once you have an Autism diagnosis, doctors stop looking for other issues. Only the neurologist felt an EEG was an important step. I first asked about an EEG over 2 years ago when we met with a developmental pediatrician.
Keep your fingers crossed for Sam!
A certain percentage of the typical population gets abnormal EEG results even if there are no true seizures occuring. A certain percentage of autistic people will also get abnormal results with no real seizure but for autistics, the chance is higher that seizures are occuring. The neurologist wanted to do a video EEG to get more information as to whether we are looking at a seizure disorder but since that involve sticking things to his head and making him stay in a bed for 48 hours, we detemrined that such a test is next to impossible.
The other option, the one we are persuing, is to give Sam a low dose of an anti-seizure med to see if he shows improvement. If he does we move forward. If he doesn't we re-think our plan.
So that is where we are.
If this medication helps Sam I will be incredibly happy. I will also be frustrated. You see, I mentioned concerns about seizures to a number of doctors because Sam had these spasms as a baby that made him rake his face during his sleep and he showed some strange eye movements. It seems like once you have an Autism diagnosis, doctors stop looking for other issues. Only the neurologist felt an EEG was an important step. I first asked about an EEG over 2 years ago when we met with a developmental pediatrician.
Keep your fingers crossed for Sam!
Wednesday, December 30, 2009
EEG in a few hours
It is 4 am and in a few hours I will drive Sam to the hospital for his EEG. I was supposed to do this a while ago but the whole idea made me want to pass out in horror. Keep Sam up most of the night? Put electrodes on his head (still don';t know how they will do that)? I gave myself a kick in the pants a few weeks ago and so we are getting it done on our break from schooll/work. I got 3 different sets of directions on when to wake Sam so i went with the set that allowed me to sleep until 2 am (well, sort of since the baby woke at midnight). Sam wouldn't wake at first, he just slept on me for a while. It has been so long since he snuggled like a baby that I let him stay for about 20 minutes.
Then he started to wake. Oh boy. He wanted "night night". He hasn't slept without melatonin for weeks and TONIGHT he wants night night. He cried, he yelled, he hit me, he threw things. He even tried to lift me at one point to get me to take him back to bed (he is 4 1/2). This went on for nearly an hour and a half.
Finally, I calmed him down with a waffle. I hoped it would trick him into thinking we were doing our morning routine. It seems to have worked.
At 8 am the hospital staff will attempt the EEG. I am trying to have confidence that the staff are used to special needs kids. They must have methods to get them to wear the electrodes. RIght? I will be royally pissed if they can't do the test.
So what makes a good outcome? If he has seizure activity then the poor guy might need meds and we have to worry about these seizures. If he doesn't have seizures going on then we have no new options. Nothing to add to what we are doing (which seems to be getting us nearly nowhere). I honestly don't know what I am hoping for. From what I understand the mostly likely outcome will be that the test is inconclusive and we will just (still) be tired.
Has anyone out there learned anything interesting from an EEG?
Then he started to wake. Oh boy. He wanted "night night". He hasn't slept without melatonin for weeks and TONIGHT he wants night night. He cried, he yelled, he hit me, he threw things. He even tried to lift me at one point to get me to take him back to bed (he is 4 1/2). This went on for nearly an hour and a half.
Finally, I calmed him down with a waffle. I hoped it would trick him into thinking we were doing our morning routine. It seems to have worked.
At 8 am the hospital staff will attempt the EEG. I am trying to have confidence that the staff are used to special needs kids. They must have methods to get them to wear the electrodes. RIght? I will be royally pissed if they can't do the test.
So what makes a good outcome? If he has seizure activity then the poor guy might need meds and we have to worry about these seizures. If he doesn't have seizures going on then we have no new options. Nothing to add to what we are doing (which seems to be getting us nearly nowhere). I honestly don't know what I am hoping for. From what I understand the mostly likely outcome will be that the test is inconclusive and we will just (still) be tired.
Has anyone out there learned anything interesting from an EEG?
Thursday, December 24, 2009
ZZZZZZZ - for Sam, at least
We changed to different Melatonin and upped the dose a tad. That seems to have done the trick. The type we tried came in a little glass bottle with a little dropper. 4 dropper = 1mg of melatonin. The dropper did not have a measure anywhere on it so there was no way to know if the dose was accurate. I switched to a different bottle (from the same company). The dosing is 2 tsp = 2.5 mg. Since 2.5 mg was our next dose, I gave it a try. Sam has slept through every night this week. He wakes early but I would rather have hims up at 5/6 each day than up racing around for hours in the middle of the night. The only problem is that Sam HATES the taste so I have to force feed it to him with a dropper every night. I have now ordered capsules that I can mixed with fruit puree.
Sleep seems to be benefitting Sam in a number of ways. The dark circles under his eyes are much better. In addition, his personality seems a bit different. He is more emotional but in a good way. He actually seems to feel it when he is scolded these days. He is more social as well. Even though he still doesn't play appropriately, he wants company; someone to sit near him while he stims. He also asks for "gickle" constantly (chase and tickle).
Now, if only I could get Maya to sleep soundly I would be one rested mama. Maya wakes at least twice a night and need a lot of comfort to get back to sleep. I would gladly bring her into our bed and just co-sleep but she doesn't want that. She wants me to hold her or to bring her downstairs to cuddle on the couch. The doctor told me to make her "cry it out" but the doctor hasn't seen Maya turn herself blue holding her breathe. I just don't have the heart. Maybe when I meet a deeper level of desperation.
Sleep seems to be benefitting Sam in a number of ways. The dark circles under his eyes are much better. In addition, his personality seems a bit different. He is more emotional but in a good way. He actually seems to feel it when he is scolded these days. He is more social as well. Even though he still doesn't play appropriately, he wants company; someone to sit near him while he stims. He also asks for "gickle" constantly (chase and tickle).
Now, if only I could get Maya to sleep soundly I would be one rested mama. Maya wakes at least twice a night and need a lot of comfort to get back to sleep. I would gladly bring her into our bed and just co-sleep but she doesn't want that. She wants me to hold her or to bring her downstairs to cuddle on the couch. The doctor told me to make her "cry it out" but the doctor hasn't seen Maya turn herself blue holding her breathe. I just don't have the heart. Maybe when I meet a deeper level of desperation.
Tuesday, December 15, 2009
A flicker then - snuff!
I felt a flicker of hope last week. The melatonin seemed to be doing the trick for Sam. He was sleeping beautifully. I began to imagine the possibilities - an overnight at my mom's or some other place. A vacation is still out of the question as Sam has no appropriate interests and he would run away if we were out in public but an overnight somewhere? With Sam able to fall asleep in a strange place? Not waking up and trashing the place and keeping us (me) up all night? The thoughts were uplifting. If we coulld get that far at 4 1/2, where might we be at 8?
He took a night off the melatonin on Saturday. He slept pretty well. I thought maybe his circadian clock had been reset. Sunday, he did not do well at all. Monday night I gave him the melatonin again. It didn't work. He was up from 2 - 4:30 hyper as ever - bouncing on his bed, yelling, laughing. He woke the baby multiple time and eventually he ran out an had to be taken downstairs. Neither Sam nor baby want dad when they wake at night so the burden is not shared. Light snuffed out.
I am giving him a higher dose tonight. If it doesn't work I am going to harass the neurologist. I am making it through work on very little sleep but I can't do this long term. I am wiped out, teary, and generally fed up.
He took a night off the melatonin on Saturday. He slept pretty well. I thought maybe his circadian clock had been reset. Sunday, he did not do well at all. Monday night I gave him the melatonin again. It didn't work. He was up from 2 - 4:30 hyper as ever - bouncing on his bed, yelling, laughing. He woke the baby multiple time and eventually he ran out an had to be taken downstairs. Neither Sam nor baby want dad when they wake at night so the burden is not shared. Light snuffed out.
I am giving him a higher dose tonight. If it doesn't work I am going to harass the neurologist. I am making it through work on very little sleep but I can't do this long term. I am wiped out, teary, and generally fed up.
Sunday, December 13, 2009
Curcumin - Straws - Melatonin
Curcumin
The newest addition to our supplement routine is Curcumin extract. I read a number of positive reviews of it so I checked with our doctor. She thought it would be a good addition. Supposedly it is anti-viral, anti-yeast, natural chelator, blah, blah, blah. I read a lot about it before making the purchase and it is very safe. In addition, it has been found to help a number of other medical conditions.
It is not a particularly expenive supplement but, of course, I had to buy the one from Lee Silsby that is supposedly formulated in a 'special" way so it cost a bit more. It is amazing how easy it can be to get the parents of autistic children to spend money.
Sam had a little trouble with bowels movements the first few days. It seemed to make him go and go. Not loose or anything like that, just frequent. He had a couple of accidents but he bounced back soon. I can't say I have seen any major changes yet. He has had good reports from school and his speech therapist said he seemed more emotionally connected. I am reluctant to attribute that to a supplement without giving it more time.
I am giving biomed a little bit longer. Sam will be 5 in April and if I haven't seen any major changes by then I am begging for meds. I never thought I would even have to consider medicating my child but here we are. He can't stop stimming. It is so distracting and addictive to him that it prevents learning and appropriate behavior.
Straws
Sam's current obsession is straws. He chews them, bends them, and drops them into various cracks. If it is warm enough to go outside, he drops them through the deck boards. If he is inside, he goes upstairs and drops them down the sides of my sweater trunk on the upstairs landing. I wish he likes something more appropriate but that doesn't seem to be happening anytime soon. Hours and hours of home therapy and the kids still won't play with a friggin' toy. Unless of course he is throwing it. He is happy to throw toys.
Melatonin
Two years ago, the developmental pediatrician recommended melatonin for Sam's sleep problems. I know it is natural and safe but I couldn't bring myself to give it too him. I was petrified of giving him anything that induces sleep. He often wakes and bounces on his bed for hours. Usually he eventually goes back to sleep. About 2 weeks ago he started running out of his room and wanting to "play" at 2 or 3 in the morning. That, on top of the fact that the baby hasn't slept through the night in over a year, wore me down. I gave him melatonin last week and it worked like a charm. He slept peacefully all night. He woke early but well-rested. I hoped a week would re-set him and so I didn't give it to him last night. He woke up briefly but overall he slept well. I didn't give it to him tonight either so I am a little anxious to see how he will do. I don't know whether he will need melatonin most nights or just every so often like a reset button.
The newest addition to our supplement routine is Curcumin extract. I read a number of positive reviews of it so I checked with our doctor. She thought it would be a good addition. Supposedly it is anti-viral, anti-yeast, natural chelator, blah, blah, blah. I read a lot about it before making the purchase and it is very safe. In addition, it has been found to help a number of other medical conditions.
It is not a particularly expenive supplement but, of course, I had to buy the one from Lee Silsby that is supposedly formulated in a 'special" way so it cost a bit more. It is amazing how easy it can be to get the parents of autistic children to spend money.
Sam had a little trouble with bowels movements the first few days. It seemed to make him go and go. Not loose or anything like that, just frequent. He had a couple of accidents but he bounced back soon. I can't say I have seen any major changes yet. He has had good reports from school and his speech therapist said he seemed more emotionally connected. I am reluctant to attribute that to a supplement without giving it more time.
I am giving biomed a little bit longer. Sam will be 5 in April and if I haven't seen any major changes by then I am begging for meds. I never thought I would even have to consider medicating my child but here we are. He can't stop stimming. It is so distracting and addictive to him that it prevents learning and appropriate behavior.
Straws
Sam's current obsession is straws. He chews them, bends them, and drops them into various cracks. If it is warm enough to go outside, he drops them through the deck boards. If he is inside, he goes upstairs and drops them down the sides of my sweater trunk on the upstairs landing. I wish he likes something more appropriate but that doesn't seem to be happening anytime soon. Hours and hours of home therapy and the kids still won't play with a friggin' toy. Unless of course he is throwing it. He is happy to throw toys.
Melatonin
Two years ago, the developmental pediatrician recommended melatonin for Sam's sleep problems. I know it is natural and safe but I couldn't bring myself to give it too him. I was petrified of giving him anything that induces sleep. He often wakes and bounces on his bed for hours. Usually he eventually goes back to sleep. About 2 weeks ago he started running out of his room and wanting to "play" at 2 or 3 in the morning. That, on top of the fact that the baby hasn't slept through the night in over a year, wore me down. I gave him melatonin last week and it worked like a charm. He slept peacefully all night. He woke early but well-rested. I hoped a week would re-set him and so I didn't give it to him last night. He woke up briefly but overall he slept well. I didn't give it to him tonight either so I am a little anxious to see how he will do. I don't know whether he will need melatonin most nights or just every so often like a reset button.
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