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How Do I Get My 20 Year Old Epileptic, Severely
Question: How do I get my 20 year old epileptic, severely Autistic son to sleep more? He is currently on Depakote, Melatonin, Ambien, Zinc, Multivitamin, Prevacid, Probiotics, L-Theanine and Simethicone. He also receives a nutritional supplement which provides 100% Magnesium requirement. He generally does not sleep more than 2 to 3 hours per night.
How do I get my 20 year old epileptic, severely Autistic son to sleep more? He is currently on Depakote, Melatonin, Ambien, Zinc, Multivitamin, Prevacid, Probiotics, L-Theanine and Simethicone. He also receives a nutritional supplement which provides 100% Magnesium requirement. He generally does not sleep more than 2 to 3 hours per night.
Brief Answer:
Autism and INSOMNIA....the 800 lb elephant that nobody can move!
Detailed Answer:
Good evening....
Thank you for your question and concern regarding your son who has a VERY COMMON problem seen in autistic children/adults and that is SLEEP DISORDERS. The most important of these is INSOMNIA. However, I'm not going to beat around the bush and I'm just going to tell you up front that the terrain of this problem has been largely unexplored and the amount of information we have to recommend to parents or caregivers of patients such as your son is very very little. There's no solid answer just yet but I can give you some basic guidelines in terms of an in-depth workup and also at least a name of a researcher at Stanford University (may be close to where you live in Calif?) who I recommend you contact. I'm familiar with her work on this topic and it's substantially more than virtually anybody else right now.
You may even be able to get your son into a study with her and there may be good reason to believe that just getting the full workup that is necessary to solve this enigma would be well worth the time and effort of getting your son to her.
Again, the severely autistic patient commonly has other neurological problems as well including cognitive problems, seizures, and there are several other things that your son may not have been screened for yet that should be on the list of things to do in order to try and tackle the problem of getting him more sleep. For example, has he been looked at for PERIODIC LEG MOVEMENTS (PLM's) or possible RESTLESS LEG SYNDROME (RLS)? You may think he's just overly active at bedtime and doesn't want to go to bed...but in fact, he may be suffering from RLS but he just can't verbalize it and it may not be on the forefront of any of his doctors' thoughts since to them it just may look more like his normal hyperactivity. But there is specific medication and regimens to treat RLS, if that's what he's got.
Another thing that he should be screened for (even though he's very young for this type of problem) is SLEEP APNEA. Investigative work has revealed that an astonishing number of these kids...even the rather younger ones who are 6, 8, or 10 years old have tons of apneic (FULL reduction of air flow during sleep) or HYPOPNIC SPELLS (PARTIAL blockage of air flow during sleep). This is something that was never thought was the case until sleep studies started getting done on these patients.
The fact that he is on DEPAKOTE for his seizure disorders may actually be a setup for him to be suffering from sleep apnea since 2 things can happen with this medication on board.
1. It (as all ANTI EPILEPTICS) reduces general activity of the brain which could affect the rate and depth of breathing pattern which if negatively impacting him to any extent during the day could be amplified at night and thereby set him up for possible apneic or hypopnic spells.
2. DEPAKOTE is known to cause weight gain in people taking it and we know that people who are overweight are ASSOCIATED more with sleep disorders such as sleep apnea. I don't know anything about whether your son has gained any amount of weight since going on DEPAKOTE...but this would be something to ask the SLEEP DISORDERS doctor who I am going to give you the name of in just a moment. There are other medications that may be able to substitute for the DEPAKOTE if he is having any type of seizure such as juvenile myoclonic epilepsy, or any type of partial epilepsy. Things such as KEPPRA or VIMPAT may work just as well to control seizures but without many of the sedative or other side effects. You'll want to check with his epilepsy doctor on those recommendations.
3. I'm GLAD to see that your son is NOT on trazodone which is commonly prescribed to patients for insomnia purposes while not really producing the types of results that people generally are looking for. In addition, TRAZODONE can cause severe headaches in nearly 20-30% of its users, and it's known to lower seizure threshold so it is definitely not a good choice of medication for your son who already has seizures. Anyways, maybe he's been on it in the past and since taken off....but if he's never been on it just remember those PEARLS in CASE someone decides to suggest it to you.
4. I like the concept of the THEANINE though my guess it's not really putting much of a dent in things otherwise, you'd wouldn't be asking the questions about his sleep.
5. I'm not happy with AMBIEN either since it's really not designed for long term or virtually permanent use which is what the vast majority of the population does with it and that tends to tachyphylax the benzodiazepine receptors in the brain which make it very difficult for any other type of drug to have effects when necessary. And again, if your son is only sleeping 2-3 hrs. per night as it is....can you honestly say the medication is doing anything that you can point to in terms of obvious benefits?
6. I have a philosophy when it comes to medications in GENERAL....that if a drug is not doing what it is advertised that it should do....well, then, it's better for the body not to have to deal with metabolizing it out of itself and better that the chemicals in those pills not expose themselves to the internal organs of the body. Agreed? I think that's more common sense than anything.....But sometimes we just feel that we HAVE TO TAKE medication to get better....even if WITHOUT the medication nothing really seems to change. So, I would consider trimming his medication regimen down to what he really NEEDS as opposed to what you are HOPING will suddenly start to work in a way that up to the present hasn't happened yet and therefore, is likely never to happen!
7. I have no problems with the magnesium nor the simethicone nor probiotics. I'm not sure why he's on Prevacid. That's another one of those drugs that doctors love to prescribe without any good rhyme or reason except to say that it's PREVENTING ulcers or medication interactions from making him feel sick. There's not 1 single study I'm aware of done in good scientific method style that his ever supported that conjecture. To me it's a fairy tale that someone invented a long time ago and it seemed logical so everyone is now doing it without really thinking too much about.
However, in the whole scheme of things, I think your son really need to trimmed down/off all unnecessary drugs to have a fighting chance to regulate or make improvements in his sleep.
8. So now here is the information I promised you. Look up XXXXXXX Primeau, MD who is a sleep specialist in Palo Alto who graduated from the same medical school program I graduated from in my specialty. She did research and fellowship training at Stanford University which is where the sleep studies on autistic studies were done originally. She likely has even more updated information than I'm providing since I'm not a sleep specialist that works extensively with patient's similar to your son.
Here is a website link that contains her most updated information:
https://www.sutterhealth.org/find-doctor/dr-michelle-primeau
And so here are my recommendations for your son.
I believe that based I've researched and what I know as a neurologist who does deal with sleep disorders in some of my patients that your son would benefit from a SOLID EVALUATION by a sleep specialist such as Dr. Primeau who has shown attention and diligence to details very important in any sleep study performed on a patient but ESPECIALLY when dealing with a patient on the spectrum such as your son. I would take him to see either Dr. Primeau if that's feasible or someone in your area....but you will need to take notes with you about what goes on at bedtime and what your son does or doesn't do to PREPARE for bedtime, what his bedroom is like, does he eat or drink anything that's potentially a hindrance to sleeping such as CAFFEINE, does he tend to become very active before bedtime (which is common in spectrum patients who have insomnia) which counters the SLEEP preparation that his body wants to do based upon the normal sleep/wake cycle. A good sleep specialist should try and get a very good idea of your son's PRE-sleep habits and what sorts of things you have trained him to do prior to sleep....(i.e. he may need to be RETRAINED a bit in order to get READY for bed).
Then, comes hooking him up for a good sleep study. This could be done in a center but if your son is nonverbal, has seizures, and is at all HYPERVIGILANT or uncomfortable around strangers then, doing the study in a location other than home may not be easy nor will it yield accurate results. I think you would prefer to do what's called an ambulatory POLYSOMNOGRAM which means he will have to be fitted with an electrode cap and hooked up to do the study overnight BUT at home....then, you just take the black box that all the data gets dumped into to read.
Next phase is to the study (after he gets hooked up which may be a bit of an adventure in and of itself...). Actually, if you can get Dr. Primeau to do the study she may be able to accommodate this little twist....but many sleep study places that offer ambulatory PSG's require the patients go to get hooked up at the facility and then, the patient goes home. I bet thought that the connection process of the cap and wires to your son would be a lot easier if done AT HOME. That means you have to find a place that is willing to send its technicians to the house and work with your son....
What you then, want to discover from the sleep study would be all the parameters and characteristics that can be OBJECTIVELY (as well as creatively) addressed such as all the things I mentioned earlier regarding sleep apnea, PLM's, amount of time your son is actually in REM vs. NON-REM sleep, duration of sleep cycle and of course, how many cycles he has per night, and what his MSLT's (Mean Sleep Latency....how long it takes him to actually FALL asleep) are...they're probably crazy high but you already knew that anyways.
I'm sorry there's really no magic bullet to give your son to make him just fall asleep like anybody else does....we don't really have those answers yet. Melatonin might be the answer but it may be that he will need really high doses....I'm talking in the range of 20, 30, or even higher. Remember, some studies have shown melatonin levels in your son's bloodstream may actually be much lower than other folks due to either genetic causes or some other aberrancy of metabolism that occurs in autistic kids...but all the way around he may have relatively normal concentrations since there are some studies showing that autistic children/patients have HIGHER blood levels for a given dose of the drug because of abnormal metabolism for melatonin that some spectrum kids actually possess.
Cheers!
If I've provided useful or helpful information to your questions could you do me the utmost of favors in not forgetting to close the query along with a few POSITIVE words of feedback and maybe even a 5 STAR rating if you feel it is deserving? I am definitely interested in getting updated information on how things are going in the next few weeks if you'd drop me a line at www.bit.ly/drdariushsaghafi
You can always reach me at that address for this or other questions. I wish you the best with everything and hope this information does help you.
This query required 115 minutes of professional time to research, assimilate, and respond in complete form.
Autism and INSOMNIA....the 800 lb elephant that nobody can move!
Detailed Answer:
Good evening....
Thank you for your question and concern regarding your son who has a VERY COMMON problem seen in autistic children/adults and that is SLEEP DISORDERS. The most important of these is INSOMNIA. However, I'm not going to beat around the bush and I'm just going to tell you up front that the terrain of this problem has been largely unexplored and the amount of information we have to recommend to parents or caregivers of patients such as your son is very very little. There's no solid answer just yet but I can give you some basic guidelines in terms of an in-depth workup and also at least a name of a researcher at Stanford University (may be close to where you live in Calif?) who I recommend you contact. I'm familiar with her work on this topic and it's substantially more than virtually anybody else right now.
You may even be able to get your son into a study with her and there may be good reason to believe that just getting the full workup that is necessary to solve this enigma would be well worth the time and effort of getting your son to her.
Again, the severely autistic patient commonly has other neurological problems as well including cognitive problems, seizures, and there are several other things that your son may not have been screened for yet that should be on the list of things to do in order to try and tackle the problem of getting him more sleep. For example, has he been looked at for PERIODIC LEG MOVEMENTS (PLM's) or possible RESTLESS LEG SYNDROME (RLS)? You may think he's just overly active at bedtime and doesn't want to go to bed...but in fact, he may be suffering from RLS but he just can't verbalize it and it may not be on the forefront of any of his doctors' thoughts since to them it just may look more like his normal hyperactivity. But there is specific medication and regimens to treat RLS, if that's what he's got.
Another thing that he should be screened for (even though he's very young for this type of problem) is SLEEP APNEA. Investigative work has revealed that an astonishing number of these kids...even the rather younger ones who are 6, 8, or 10 years old have tons of apneic (FULL reduction of air flow during sleep) or HYPOPNIC SPELLS (PARTIAL blockage of air flow during sleep). This is something that was never thought was the case until sleep studies started getting done on these patients.
The fact that he is on DEPAKOTE for his seizure disorders may actually be a setup for him to be suffering from sleep apnea since 2 things can happen with this medication on board.
1. It (as all ANTI EPILEPTICS) reduces general activity of the brain which could affect the rate and depth of breathing pattern which if negatively impacting him to any extent during the day could be amplified at night and thereby set him up for possible apneic or hypopnic spells.
2. DEPAKOTE is known to cause weight gain in people taking it and we know that people who are overweight are ASSOCIATED more with sleep disorders such as sleep apnea. I don't know anything about whether your son has gained any amount of weight since going on DEPAKOTE...but this would be something to ask the SLEEP DISORDERS doctor who I am going to give you the name of in just a moment. There are other medications that may be able to substitute for the DEPAKOTE if he is having any type of seizure such as juvenile myoclonic epilepsy, or any type of partial epilepsy. Things such as KEPPRA or VIMPAT may work just as well to control seizures but without many of the sedative or other side effects. You'll want to check with his epilepsy doctor on those recommendations.
3. I'm GLAD to see that your son is NOT on trazodone which is commonly prescribed to patients for insomnia purposes while not really producing the types of results that people generally are looking for. In addition, TRAZODONE can cause severe headaches in nearly 20-30% of its users, and it's known to lower seizure threshold so it is definitely not a good choice of medication for your son who already has seizures. Anyways, maybe he's been on it in the past and since taken off....but if he's never been on it just remember those PEARLS in CASE someone decides to suggest it to you.
4. I like the concept of the THEANINE though my guess it's not really putting much of a dent in things otherwise, you'd wouldn't be asking the questions about his sleep.
5. I'm not happy with AMBIEN either since it's really not designed for long term or virtually permanent use which is what the vast majority of the population does with it and that tends to tachyphylax the benzodiazepine receptors in the brain which make it very difficult for any other type of drug to have effects when necessary. And again, if your son is only sleeping 2-3 hrs. per night as it is....can you honestly say the medication is doing anything that you can point to in terms of obvious benefits?
6. I have a philosophy when it comes to medications in GENERAL....that if a drug is not doing what it is advertised that it should do....well, then, it's better for the body not to have to deal with metabolizing it out of itself and better that the chemicals in those pills not expose themselves to the internal organs of the body. Agreed? I think that's more common sense than anything.....But sometimes we just feel that we HAVE TO TAKE medication to get better....even if WITHOUT the medication nothing really seems to change. So, I would consider trimming his medication regimen down to what he really NEEDS as opposed to what you are HOPING will suddenly start to work in a way that up to the present hasn't happened yet and therefore, is likely never to happen!
7. I have no problems with the magnesium nor the simethicone nor probiotics. I'm not sure why he's on Prevacid. That's another one of those drugs that doctors love to prescribe without any good rhyme or reason except to say that it's PREVENTING ulcers or medication interactions from making him feel sick. There's not 1 single study I'm aware of done in good scientific method style that his ever supported that conjecture. To me it's a fairy tale that someone invented a long time ago and it seemed logical so everyone is now doing it without really thinking too much about.
However, in the whole scheme of things, I think your son really need to trimmed down/off all unnecessary drugs to have a fighting chance to regulate or make improvements in his sleep.
8. So now here is the information I promised you. Look up XXXXXXX Primeau, MD who is a sleep specialist in Palo Alto who graduated from the same medical school program I graduated from in my specialty. She did research and fellowship training at Stanford University which is where the sleep studies on autistic studies were done originally. She likely has even more updated information than I'm providing since I'm not a sleep specialist that works extensively with patient's similar to your son.
Here is a website link that contains her most updated information:
https://www.sutterhealth.org/find-doctor/dr-michelle-primeau
And so here are my recommendations for your son.
I believe that based I've researched and what I know as a neurologist who does deal with sleep disorders in some of my patients that your son would benefit from a SOLID EVALUATION by a sleep specialist such as Dr. Primeau who has shown attention and diligence to details very important in any sleep study performed on a patient but ESPECIALLY when dealing with a patient on the spectrum such as your son. I would take him to see either Dr. Primeau if that's feasible or someone in your area....but you will need to take notes with you about what goes on at bedtime and what your son does or doesn't do to PREPARE for bedtime, what his bedroom is like, does he eat or drink anything that's potentially a hindrance to sleeping such as CAFFEINE, does he tend to become very active before bedtime (which is common in spectrum patients who have insomnia) which counters the SLEEP preparation that his body wants to do based upon the normal sleep/wake cycle. A good sleep specialist should try and get a very good idea of your son's PRE-sleep habits and what sorts of things you have trained him to do prior to sleep....(i.e. he may need to be RETRAINED a bit in order to get READY for bed).
Then, comes hooking him up for a good sleep study. This could be done in a center but if your son is nonverbal, has seizures, and is at all HYPERVIGILANT or uncomfortable around strangers then, doing the study in a location other than home may not be easy nor will it yield accurate results. I think you would prefer to do what's called an ambulatory POLYSOMNOGRAM which means he will have to be fitted with an electrode cap and hooked up to do the study overnight BUT at home....then, you just take the black box that all the data gets dumped into to read.
Next phase is to the study (after he gets hooked up which may be a bit of an adventure in and of itself...). Actually, if you can get Dr. Primeau to do the study she may be able to accommodate this little twist....but many sleep study places that offer ambulatory PSG's require the patients go to get hooked up at the facility and then, the patient goes home. I bet thought that the connection process of the cap and wires to your son would be a lot easier if done AT HOME. That means you have to find a place that is willing to send its technicians to the house and work with your son....
What you then, want to discover from the sleep study would be all the parameters and characteristics that can be OBJECTIVELY (as well as creatively) addressed such as all the things I mentioned earlier regarding sleep apnea, PLM's, amount of time your son is actually in REM vs. NON-REM sleep, duration of sleep cycle and of course, how many cycles he has per night, and what his MSLT's (Mean Sleep Latency....how long it takes him to actually FALL asleep) are...they're probably crazy high but you already knew that anyways.
I'm sorry there's really no magic bullet to give your son to make him just fall asleep like anybody else does....we don't really have those answers yet. Melatonin might be the answer but it may be that he will need really high doses....I'm talking in the range of 20, 30, or even higher. Remember, some studies have shown melatonin levels in your son's bloodstream may actually be much lower than other folks due to either genetic causes or some other aberrancy of metabolism that occurs in autistic kids...but all the way around he may have relatively normal concentrations since there are some studies showing that autistic children/patients have HIGHER blood levels for a given dose of the drug because of abnormal metabolism for melatonin that some spectrum kids actually possess.
Cheers!
If I've provided useful or helpful information to your questions could you do me the utmost of favors in not forgetting to close the query along with a few POSITIVE words of feedback and maybe even a 5 STAR rating if you feel it is deserving? I am definitely interested in getting updated information on how things are going in the next few weeks if you'd drop me a line at www.bit.ly/drdariushsaghafi
You can always reach me at that address for this or other questions. I wish you the best with everything and hope this information does help you.
This query required 115 minutes of professional time to research, assimilate, and respond in complete form.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Brief Answer:
Autism and INSOMNIA....the 800 lb elephant that nobody can move!
Detailed Answer:
Good evening....
Thank you for your question and concern regarding your son who has a VERY COMMON problem seen in autistic children/adults and that is SLEEP DISORDERS. The most important of these is INSOMNIA. However, I'm not going to beat around the bush and I'm just going to tell you up front that the terrain of this problem has been largely unexplored and the amount of information we have to recommend to parents or caregivers of patients such as your son is very very little. There's no solid answer just yet but I can give you some basic guidelines in terms of an in-depth workup and also at least a name of a researcher at Stanford University (may be close to where you live in Calif?) who I recommend you contact. I'm familiar with her work on this topic and it's substantially more than virtually anybody else right now.
You may even be able to get your son into a study with her and there may be good reason to believe that just getting the full workup that is necessary to solve this enigma would be well worth the time and effort of getting your son to her.
Again, the severely autistic patient commonly has other neurological problems as well including cognitive problems, seizures, and there are several other things that your son may not have been screened for yet that should be on the list of things to do in order to try and tackle the problem of getting him more sleep. For example, has he been looked at for PERIODIC LEG MOVEMENTS (PLM's) or possible RESTLESS LEG SYNDROME (RLS)? You may think he's just overly active at bedtime and doesn't want to go to bed...but in fact, he may be suffering from RLS but he just can't verbalize it and it may not be on the forefront of any of his doctors' thoughts since to them it just may look more like his normal hyperactivity. But there is specific medication and regimens to treat RLS, if that's what he's got.
Another thing that he should be screened for (even though he's very young for this type of problem) is SLEEP APNEA. Investigative work has revealed that an astonishing number of these kids...even the rather younger ones who are 6, 8, or 10 years old have tons of apneic (FULL reduction of air flow during sleep) or HYPOPNIC SPELLS (PARTIAL blockage of air flow during sleep). This is something that was never thought was the case until sleep studies started getting done on these patients.
The fact that he is on DEPAKOTE for his seizure disorders may actually be a setup for him to be suffering from sleep apnea since 2 things can happen with this medication on board.
1. It (as all ANTI EPILEPTICS) reduces general activity of the brain which could affect the rate and depth of breathing pattern which if negatively impacting him to any extent during the day could be amplified at night and thereby set him up for possible apneic or hypopnic spells.
2. DEPAKOTE is known to cause weight gain in people taking it and we know that people who are overweight are ASSOCIATED more with sleep disorders such as sleep apnea. I don't know anything about whether your son has gained any amount of weight since going on DEPAKOTE...but this would be something to ask the SLEEP DISORDERS doctor who I am going to give you the name of in just a moment. There are other medications that may be able to substitute for the DEPAKOTE if he is having any type of seizure such as juvenile myoclonic epilepsy, or any type of partial epilepsy. Things such as KEPPRA or VIMPAT may work just as well to control seizures but without many of the sedative or other side effects. You'll want to check with his epilepsy doctor on those recommendations.
3. I'm GLAD to see that your son is NOT on trazodone which is commonly prescribed to patients for insomnia purposes while not really producing the types of results that people generally are looking for. In addition, TRAZODONE can cause severe headaches in nearly 20-30% of its users, and it's known to lower seizure threshold so it is definitely not a good choice of medication for your son who already has seizures. Anyways, maybe he's been on it in the past and since taken off....but if he's never been on it just remember those PEARLS in CASE someone decides to suggest it to you.
4. I like the concept of the THEANINE though my guess it's not really putting much of a dent in things otherwise, you'd wouldn't be asking the questions about his sleep.
5. I'm not happy with AMBIEN either since it's really not designed for long term or virtually permanent use which is what the vast majority of the population does with it and that tends to tachyphylax the benzodiazepine receptors in the brain which make it very difficult for any other type of drug to have effects when necessary. And again, if your son is only sleeping 2-3 hrs. per night as it is....can you honestly say the medication is doing anything that you can point to in terms of obvious benefits?
6. I have a philosophy when it comes to medications in GENERAL....that if a drug is not doing what it is advertised that it should do....well, then, it's better for the body not to have to deal with metabolizing it out of itself and better that the chemicals in those pills not expose themselves to the internal organs of the body. Agreed? I think that's more common sense than anything.....But sometimes we just feel that we HAVE TO TAKE medication to get better....even if WITHOUT the medication nothing really seems to change. So, I would consider trimming his medication regimen down to what he really NEEDS as opposed to what you are HOPING will suddenly start to work in a way that up to the present hasn't happened yet and therefore, is likely never to happen!
7. I have no problems with the magnesium nor the simethicone nor probiotics. I'm not sure why he's on Prevacid. That's another one of those drugs that doctors love to prescribe without any good rhyme or reason except to say that it's PREVENTING ulcers or medication interactions from making him feel sick. There's not 1 single study I'm aware of done in good scientific method style that his ever supported that conjecture. To me it's a fairy tale that someone invented a long time ago and it seemed logical so everyone is now doing it without really thinking too much about.
However, in the whole scheme of things, I think your son really need to trimmed down/off all unnecessary drugs to have a fighting chance to regulate or make improvements in his sleep.
8. So now here is the information I promised you. Look up XXXXXXX Primeau, MD who is a sleep specialist in Palo Alto who graduated from the same medical school program I graduated from in my specialty. She did research and fellowship training at Stanford University which is where the sleep studies on autistic studies were done originally. She likely has even more updated information than I'm providing since I'm not a sleep specialist that works extensively with patient's similar to your son.
Here is a website link that contains her most updated information:
https://www.sutterhealth.org/find-doctor/dr-michelle-primeau
And so here are my recommendations for your son.
I believe that based I've researched and what I know as a neurologist who does deal with sleep disorders in some of my patients that your son would benefit from a SOLID EVALUATION by a sleep specialist such as Dr. Primeau who has shown attention and diligence to details very important in any sleep study performed on a patient but ESPECIALLY when dealing with a patient on the spectrum such as your son. I would take him to see either Dr. Primeau if that's feasible or someone in your area....but you will need to take notes with you about what goes on at bedtime and what your son does or doesn't do to PREPARE for bedtime, what his bedroom is like, does he eat or drink anything that's potentially a hindrance to sleeping such as CAFFEINE, does he tend to become very active before bedtime (which is common in spectrum patients who have insomnia) which counters the SLEEP preparation that his body wants to do based upon the normal sleep/wake cycle. A good sleep specialist should try and get a very good idea of your son's PRE-sleep habits and what sorts of things you have trained him to do prior to sleep....(i.e. he may need to be RETRAINED a bit in order to get READY for bed).
Then, comes hooking him up for a good sleep study. This could be done in a center but if your son is nonverbal, has seizures, and is at all HYPERVIGILANT or uncomfortable around strangers then, doing the study in a location other than home may not be easy nor will it yield accurate results. I think you would prefer to do what's called an ambulatory POLYSOMNOGRAM which means he will have to be fitted with an electrode cap and hooked up to do the study overnight BUT at home....then, you just take the black box that all the data gets dumped into to read.
Next phase is to the study (after he gets hooked up which may be a bit of an adventure in and of itself...). Actually, if you can get Dr. Primeau to do the study she may be able to accommodate this little twist....but many sleep study places that offer ambulatory PSG's require the patients go to get hooked up at the facility and then, the patient goes home. I bet thought that the connection process of the cap and wires to your son would be a lot easier if done AT HOME. That means you have to find a place that is willing to send its technicians to the house and work with your son....
What you then, want to discover from the sleep study would be all the parameters and characteristics that can be OBJECTIVELY (as well as creatively) addressed such as all the things I mentioned earlier regarding sleep apnea, PLM's, amount of time your son is actually in REM vs. NON-REM sleep, duration of sleep cycle and of course, how many cycles he has per night, and what his MSLT's (Mean Sleep Latency....how long it takes him to actually FALL asleep) are...they're probably crazy high but you already knew that anyways.
I'm sorry there's really no magic bullet to give your son to make him just fall asleep like anybody else does....we don't really have those answers yet. Melatonin might be the answer but it may be that he will need really high doses....I'm talking in the range of 20, 30, or even higher. Remember, some studies have shown melatonin levels in your son's bloodstream may actually be much lower than other folks due to either genetic causes or some other aberrancy of metabolism that occurs in autistic kids...but all the way around he may have relatively normal concentrations since there are some studies showing that autistic children/patients have HIGHER blood levels for a given dose of the drug because of abnormal metabolism for melatonin that some spectrum kids actually possess.
Cheers!
If I've provided useful or helpful information to your questions could you do me the utmost of favors in not forgetting to close the query along with a few POSITIVE words of feedback and maybe even a 5 STAR rating if you feel it is deserving? I am definitely interested in getting updated information on how things are going in the next few weeks if you'd drop me a line at www.bit.ly/drdariushsaghafi
You can always reach me at that address for this or other questions. I wish you the best with everything and hope this information does help you.
This query required 115 minutes of professional time to research, assimilate, and respond in complete form.
Autism and INSOMNIA....the 800 lb elephant that nobody can move!
Detailed Answer:
Good evening....
Thank you for your question and concern regarding your son who has a VERY COMMON problem seen in autistic children/adults and that is SLEEP DISORDERS. The most important of these is INSOMNIA. However, I'm not going to beat around the bush and I'm just going to tell you up front that the terrain of this problem has been largely unexplored and the amount of information we have to recommend to parents or caregivers of patients such as your son is very very little. There's no solid answer just yet but I can give you some basic guidelines in terms of an in-depth workup and also at least a name of a researcher at Stanford University (may be close to where you live in Calif?) who I recommend you contact. I'm familiar with her work on this topic and it's substantially more than virtually anybody else right now.
You may even be able to get your son into a study with her and there may be good reason to believe that just getting the full workup that is necessary to solve this enigma would be well worth the time and effort of getting your son to her.
Again, the severely autistic patient commonly has other neurological problems as well including cognitive problems, seizures, and there are several other things that your son may not have been screened for yet that should be on the list of things to do in order to try and tackle the problem of getting him more sleep. For example, has he been looked at for PERIODIC LEG MOVEMENTS (PLM's) or possible RESTLESS LEG SYNDROME (RLS)? You may think he's just overly active at bedtime and doesn't want to go to bed...but in fact, he may be suffering from RLS but he just can't verbalize it and it may not be on the forefront of any of his doctors' thoughts since to them it just may look more like his normal hyperactivity. But there is specific medication and regimens to treat RLS, if that's what he's got.
Another thing that he should be screened for (even though he's very young for this type of problem) is SLEEP APNEA. Investigative work has revealed that an astonishing number of these kids...even the rather younger ones who are 6, 8, or 10 years old have tons of apneic (FULL reduction of air flow during sleep) or HYPOPNIC SPELLS (PARTIAL blockage of air flow during sleep). This is something that was never thought was the case until sleep studies started getting done on these patients.
The fact that he is on DEPAKOTE for his seizure disorders may actually be a setup for him to be suffering from sleep apnea since 2 things can happen with this medication on board.
1. It (as all ANTI EPILEPTICS) reduces general activity of the brain which could affect the rate and depth of breathing pattern which if negatively impacting him to any extent during the day could be amplified at night and thereby set him up for possible apneic or hypopnic spells.
2. DEPAKOTE is known to cause weight gain in people taking it and we know that people who are overweight are ASSOCIATED more with sleep disorders such as sleep apnea. I don't know anything about whether your son has gained any amount of weight since going on DEPAKOTE...but this would be something to ask the SLEEP DISORDERS doctor who I am going to give you the name of in just a moment. There are other medications that may be able to substitute for the DEPAKOTE if he is having any type of seizure such as juvenile myoclonic epilepsy, or any type of partial epilepsy. Things such as KEPPRA or VIMPAT may work just as well to control seizures but without many of the sedative or other side effects. You'll want to check with his epilepsy doctor on those recommendations.
3. I'm GLAD to see that your son is NOT on trazodone which is commonly prescribed to patients for insomnia purposes while not really producing the types of results that people generally are looking for. In addition, TRAZODONE can cause severe headaches in nearly 20-30% of its users, and it's known to lower seizure threshold so it is definitely not a good choice of medication for your son who already has seizures. Anyways, maybe he's been on it in the past and since taken off....but if he's never been on it just remember those PEARLS in CASE someone decides to suggest it to you.
4. I like the concept of the THEANINE though my guess it's not really putting much of a dent in things otherwise, you'd wouldn't be asking the questions about his sleep.
5. I'm not happy with AMBIEN either since it's really not designed for long term or virtually permanent use which is what the vast majority of the population does with it and that tends to tachyphylax the benzodiazepine receptors in the brain which make it very difficult for any other type of drug to have effects when necessary. And again, if your son is only sleeping 2-3 hrs. per night as it is....can you honestly say the medication is doing anything that you can point to in terms of obvious benefits?
6. I have a philosophy when it comes to medications in GENERAL....that if a drug is not doing what it is advertised that it should do....well, then, it's better for the body not to have to deal with metabolizing it out of itself and better that the chemicals in those pills not expose themselves to the internal organs of the body. Agreed? I think that's more common sense than anything.....But sometimes we just feel that we HAVE TO TAKE medication to get better....even if WITHOUT the medication nothing really seems to change. So, I would consider trimming his medication regimen down to what he really NEEDS as opposed to what you are HOPING will suddenly start to work in a way that up to the present hasn't happened yet and therefore, is likely never to happen!
7. I have no problems with the magnesium nor the simethicone nor probiotics. I'm not sure why he's on Prevacid. That's another one of those drugs that doctors love to prescribe without any good rhyme or reason except to say that it's PREVENTING ulcers or medication interactions from making him feel sick. There's not 1 single study I'm aware of done in good scientific method style that his ever supported that conjecture. To me it's a fairy tale that someone invented a long time ago and it seemed logical so everyone is now doing it without really thinking too much about.
However, in the whole scheme of things, I think your son really need to trimmed down/off all unnecessary drugs to have a fighting chance to regulate or make improvements in his sleep.
8. So now here is the information I promised you. Look up XXXXXXX Primeau, MD who is a sleep specialist in Palo Alto who graduated from the same medical school program I graduated from in my specialty. She did research and fellowship training at Stanford University which is where the sleep studies on autistic studies were done originally. She likely has even more updated information than I'm providing since I'm not a sleep specialist that works extensively with patient's similar to your son.
Here is a website link that contains her most updated information:
https://www.sutterhealth.org/find-doctor/dr-michelle-primeau
And so here are my recommendations for your son.
I believe that based I've researched and what I know as a neurologist who does deal with sleep disorders in some of my patients that your son would benefit from a SOLID EVALUATION by a sleep specialist such as Dr. Primeau who has shown attention and diligence to details very important in any sleep study performed on a patient but ESPECIALLY when dealing with a patient on the spectrum such as your son. I would take him to see either Dr. Primeau if that's feasible or someone in your area....but you will need to take notes with you about what goes on at bedtime and what your son does or doesn't do to PREPARE for bedtime, what his bedroom is like, does he eat or drink anything that's potentially a hindrance to sleeping such as CAFFEINE, does he tend to become very active before bedtime (which is common in spectrum patients who have insomnia) which counters the SLEEP preparation that his body wants to do based upon the normal sleep/wake cycle. A good sleep specialist should try and get a very good idea of your son's PRE-sleep habits and what sorts of things you have trained him to do prior to sleep....(i.e. he may need to be RETRAINED a bit in order to get READY for bed).
Then, comes hooking him up for a good sleep study. This could be done in a center but if your son is nonverbal, has seizures, and is at all HYPERVIGILANT or uncomfortable around strangers then, doing the study in a location other than home may not be easy nor will it yield accurate results. I think you would prefer to do what's called an ambulatory POLYSOMNOGRAM which means he will have to be fitted with an electrode cap and hooked up to do the study overnight BUT at home....then, you just take the black box that all the data gets dumped into to read.
Next phase is to the study (after he gets hooked up which may be a bit of an adventure in and of itself...). Actually, if you can get Dr. Primeau to do the study she may be able to accommodate this little twist....but many sleep study places that offer ambulatory PSG's require the patients go to get hooked up at the facility and then, the patient goes home. I bet thought that the connection process of the cap and wires to your son would be a lot easier if done AT HOME. That means you have to find a place that is willing to send its technicians to the house and work with your son....
What you then, want to discover from the sleep study would be all the parameters and characteristics that can be OBJECTIVELY (as well as creatively) addressed such as all the things I mentioned earlier regarding sleep apnea, PLM's, amount of time your son is actually in REM vs. NON-REM sleep, duration of sleep cycle and of course, how many cycles he has per night, and what his MSLT's (Mean Sleep Latency....how long it takes him to actually FALL asleep) are...they're probably crazy high but you already knew that anyways.
I'm sorry there's really no magic bullet to give your son to make him just fall asleep like anybody else does....we don't really have those answers yet. Melatonin might be the answer but it may be that he will need really high doses....I'm talking in the range of 20, 30, or even higher. Remember, some studies have shown melatonin levels in your son's bloodstream may actually be much lower than other folks due to either genetic causes or some other aberrancy of metabolism that occurs in autistic kids...but all the way around he may have relatively normal concentrations since there are some studies showing that autistic children/patients have HIGHER blood levels for a given dose of the drug because of abnormal metabolism for melatonin that some spectrum kids actually possess.
Cheers!
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You can always reach me at that address for this or other questions. I wish you the best with everything and hope this information does help you.
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