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Autism & Temporary Paralysis??
Has anyone heard of temporary paralysis on one side of the body being related to autism? My 13 year old son experienced this recently and it lasted for several days and slowly he is starting to get use the Left side of his body again. The doctors are still doing tests trying to figure out what caused it. He has autism, and I was wondering if I should be taking him to an autism specialist for this instead of his regular medical doctor.
I am a behavior analyst, I work extensively with children and adults with developmental disabilities including hundreds of individuals with Autism.
Don't ever allow a doctor to dismiss your son's symptoms by saying he's Faking it.
People do not Fake that type of problems.
Don't ever allow a doctor to dismiss your son's symptoms by saying he's Faking it.
People do not Fake that type of problems.
I know this thread is old but if you have not since found a cause: look into Periodic Paralysis. My son has autism and began having random paralytic episodes. It turned out he has Hykperkalemic periodic paralysis, which has nothing to do with autism. www.ppa.org.
We had two EEG's done and they found nothing. The paralysis condition is rare and generally not recognized by most doctors.
We had two EEG's done and they found nothing. The paralysis condition is rare and generally not recognized by most doctors.
You're paying co-pays? Your son is officially diagnosed with autism? Does your other child have a developmental disability?
You most likely need to contact the board of Mental Retardation and Developmental Disabilities and/or Job and Family Services regarding Medicaid services. I looked up your state and while it doesn't specifically cover autism (only 3 or 4 states do, mine--like yours--doesn't), autism is covered generally under developmental disability. There are medicaid waivers to get services for at least your autistic child, and for your other child also if they are developmentally disabled. You may have to be put on a wait-list to get these services. But you can get a medicaid card. This will pay for medical expenses that your insurance doesn't cover so you won't be paying copays; at least that's how it works here in Ohio. Before I went on disability, I was a provider of in-home medicaid services for autistic children. All of these children had medicaid cards that paid for hospitalizations, doctors, and medications even when their parents had insurance through their work.
It is definitely worth asking about. Also, these state agencies are almost always a bit tricky to work with: persistence pays off big time. Keep in mind that the squeaky wheel gets the oil. The parents who go through the process with an attitude of entitlement and a loud mouth come out the other end with the maximum amount of help for their child. The parents who trust the system just to work properly if they sit back calmly, fill out papers, and wait for an answer get little or nothing in the end, and may never know that all these types of help exist. If you have more questions about medicaid, feel free to send me a message and I'll tell you everything I can.
You most likely need to contact the board of Mental Retardation and Developmental Disabilities and/or Job and Family Services regarding Medicaid services. I looked up your state and while it doesn't specifically cover autism (only 3 or 4 states do, mine--like yours--doesn't), autism is covered generally under developmental disability. There are medicaid waivers to get services for at least your autistic child, and for your other child also if they are developmentally disabled. You may have to be put on a wait-list to get these services. But you can get a medicaid card. This will pay for medical expenses that your insurance doesn't cover so you won't be paying copays; at least that's how it works here in Ohio. Before I went on disability, I was a provider of in-home medicaid services for autistic children. All of these children had medicaid cards that paid for hospitalizations, doctors, and medications even when their parents had insurance through their work.
It is definitely worth asking about. Also, these state agencies are almost always a bit tricky to work with: persistence pays off big time. Keep in mind that the squeaky wheel gets the oil. The parents who go through the process with an attitude of entitlement and a loud mouth come out the other end with the maximum amount of help for their child. The parents who trust the system just to work properly if they sit back calmly, fill out papers, and wait for an answer get little or nothing in the end, and may never know that all these types of help exist. If you have more questions about medicaid, feel free to send me a message and I'll tell you everything I can.
Thank you for the encouragement, I definately needed someone to remind me that I am the one who needs to stand up for my child and not be bullied by the "white coats". I was getting run-down with all of the "we don't know" answers and I was secretly hoping the symptoms would just go away and never return. (So he could get a break from all the testing). But the reality is that I would constantly be afraid of it returning if I don't know what caused it!
Thank you so much for your advice, it helps to hear an outside perspective. I was beginning to feel like I was loosing my mind! They kept telling me that his autism was not relavent, and my gut instinct was that it was relevant. Anyway, the pediatrician did an MRI of his brain and said that it looked normal. And so far the blood work results that have come in are normal. The thing that I worry about is that since the episode is over now, do we have to wait for another episode to get any test results to show the problem?
At least I have a plan of action now. I am definately going to take him to an autism specialist for a second opinion. Unfortunately I will have to wait a few weeks because we are out of money for these trips. Between copays and deductibles I have wiped out my savings, we refinanced the house, we are behind on bills, and still we don't have answers to what is causing this! (My other son has 8 different disorders - he is the expensive one!)
It is hard raising special needs kids, but I wouldn't trade it for anything. They see the world completely different which means they often stop and notice the wonderful little details of nature that we overlook. And having a child that makes you stop and appreciate life is a blessing that I couldn't explain to anyone who has never known an autistic child!
At least I have a plan of action now. I am definately going to take him to an autism specialist for a second opinion. Unfortunately I will have to wait a few weeks because we are out of money for these trips. Between copays and deductibles I have wiped out my savings, we refinanced the house, we are behind on bills, and still we don't have answers to what is causing this! (My other son has 8 different disorders - he is the expensive one!)
It is hard raising special needs kids, but I wouldn't trade it for anything. They see the world completely different which means they often stop and notice the wonderful little details of nature that we overlook. And having a child that makes you stop and appreciate life is a blessing that I couldn't explain to anyone who has never known an autistic child!
What were they thinking of sticking pins into an autistic child that has sensory issues! Good luck with getting some answers, and don't be afraid to put your foot down and say 'no' to anything/testing you know your son will not be able to cope with. Just because they wear a white coat doesn't turn them into Gods (although they can behave like them!). If it is possible have him sedated.
Here's a neuro doc that specializes in developmental disabilities. I am not certain this doc also deals with acute issues such as the paralysis, but it might be worth calling to find out.
1600 7th Ave. S. Birmingham, AL 35233 (205) - 939 - 9100.
Children's Hospital, UAB School of Medicine.
Alan Percy, M.D.
Department: Neurology
Title: Professor
M.D. Degree: Stanford University School of Medicine, 1965
Internship: Stanford University Medical Center
Residency: Stanford University Medical Center; Johns Hopkins Hospital
Certifications: Pediatrics, 1974; Psychiatry and Neurology, 1978, 2003; Neurodevelopmental Disabilities, 2001
Specialty Interests: Rett Syndrome, neurodegenerative disorders
1600 7th Ave. S. Birmingham, AL 35233 (205) - 939 - 9100.
Children's Hospital, UAB School of Medicine.
Alan Percy, M.D.
Department: Neurology
Title: Professor
M.D. Degree: Stanford University School of Medicine, 1965
Internship: Stanford University Medical Center
Residency: Stanford University Medical Center; Johns Hopkins Hospital
Certifications: Pediatrics, 1974; Psychiatry and Neurology, 1978, 2003; Neurodevelopmental Disabilities, 2001
Specialty Interests: Rett Syndrome, neurodegenerative disorders
I've worked with autistic children for years, and have neurological problems that cause paralysis myself which evaded proper diagnosis for some time, so I'm going to try to mesh my experience as a professional and what I know from being a patient.
First, and you may very well already know this as a parent of an autistic child--although it tends to be much more of an issue with lower functioning children so depending on your child's unique development, it may or may not have come up before--many medical professionals are really VERY POOR at performing even basic examinations of autistic children because they have little or no experience in the field. I have watched more times than I can count as a doctor tried to verbally reason with a child whom I had just explained had absolutely NO verbal skills whatsoever, and did not even know his own name. These docs mean well, they just don't "get it." It sounds like the neurologist you saw didn't get it. Period. It is okay to ask for a second opinion and see a different neurologist.
Does your child see a psychologist who specializes in autism (or did he to get his diagnosis)? This person would be an excellent resource to ask for a name of a neurologist who is experienced with autistic children. Is there a parent support group for autism in your area? Can you try getting a name there? If you can't get a referral, call neurologists until you find one that has experience with autistic children. Birmingham is a big enough city that someone there has experience and know-how.
Because your son is autistic, subjective tests that require a response from your son are not going to be reliable like they might be in another child. (Although, really, I would think even a typical child might have a hard time sitting around being poked!) Paralysis, even temporary paralysis, is a serious neurological symptom. For my temporary paralysis episodes, I've been put through CT, MRI, and MRA. These tests take an objective look at the brain and it would seem to make more sense to do that than to rely on subjective tests for your son. Depending on his behavior, ability to lie perfectly still on command, and tolerance for loud noise and enclosed spaces, however, these tests often require sedation for children--particularly for children on the autism spectrum who may be bothered by the noise the machines generate. As a parent you will have to weigh the risks of having your son sedated, but there is no evidence that I've heard of that the risks are any higher for an autistic child than any other child.
As for what could possibly cause the paralysis, autism does tend to correlate with a higher incidence of seizures for some reason, which might be one explanation. An EEG *may* help diagnose this, but a 1 hour EEG can often miss the diagnosis. If you're going to go through the trouble of having the electrodes glued on anyway, discuss the possibility of doing a 24 hour ambulatory EEG. It will be a hassle to try to keep your son from wanting to pull the leads off his head, but you will have a smaller margin of error from the results, and a higher likelihood of getting an answer. (The smell of the glue can be very aversive to autistic children; bringing something he likes the smell of with you when you get the EEG leads put on that he can hold to his nose may be helpful. Like a ripe apple, or a handkerchief fresh from the laundry.)
Other possible causes include migraine (with or without headache, called "hemiplegic migraine") or a vascular problem in the brain such as a malformation of the blood vessels (which is what an MRA--magnetic resonance angiogram, I believe--checks for). Beyond that, there are scads of diseases which can cause those kind of symptoms, and I'm no expert in genetics or anything but I believe most can be ruled out by CT, MRI, MRA, EEG, EMG, etc. The point is, a good neurologist will be able to know from your son's particular symptoms which of these tests are necessary to rule out any serious conditions. But I can't believe they wouldn't do *anything* to get a look at his brain or his nerve conduction.
Get a second opinion, and if at all possible, make phone calls until you find a neurologist who has some familiarity with autistic children.
I hope that helps!!
-Heather.
First, and you may very well already know this as a parent of an autistic child--although it tends to be much more of an issue with lower functioning children so depending on your child's unique development, it may or may not have come up before--many medical professionals are really VERY POOR at performing even basic examinations of autistic children because they have little or no experience in the field. I have watched more times than I can count as a doctor tried to verbally reason with a child whom I had just explained had absolutely NO verbal skills whatsoever, and did not even know his own name. These docs mean well, they just don't "get it." It sounds like the neurologist you saw didn't get it. Period. It is okay to ask for a second opinion and see a different neurologist.
Does your child see a psychologist who specializes in autism (or did he to get his diagnosis)? This person would be an excellent resource to ask for a name of a neurologist who is experienced with autistic children. Is there a parent support group for autism in your area? Can you try getting a name there? If you can't get a referral, call neurologists until you find one that has experience with autistic children. Birmingham is a big enough city that someone there has experience and know-how.
Because your son is autistic, subjective tests that require a response from your son are not going to be reliable like they might be in another child. (Although, really, I would think even a typical child might have a hard time sitting around being poked!) Paralysis, even temporary paralysis, is a serious neurological symptom. For my temporary paralysis episodes, I've been put through CT, MRI, and MRA. These tests take an objective look at the brain and it would seem to make more sense to do that than to rely on subjective tests for your son. Depending on his behavior, ability to lie perfectly still on command, and tolerance for loud noise and enclosed spaces, however, these tests often require sedation for children--particularly for children on the autism spectrum who may be bothered by the noise the machines generate. As a parent you will have to weigh the risks of having your son sedated, but there is no evidence that I've heard of that the risks are any higher for an autistic child than any other child.
As for what could possibly cause the paralysis, autism does tend to correlate with a higher incidence of seizures for some reason, which might be one explanation. An EEG *may* help diagnose this, but a 1 hour EEG can often miss the diagnosis. If you're going to go through the trouble of having the electrodes glued on anyway, discuss the possibility of doing a 24 hour ambulatory EEG. It will be a hassle to try to keep your son from wanting to pull the leads off his head, but you will have a smaller margin of error from the results, and a higher likelihood of getting an answer. (The smell of the glue can be very aversive to autistic children; bringing something he likes the smell of with you when you get the EEG leads put on that he can hold to his nose may be helpful. Like a ripe apple, or a handkerchief fresh from the laundry.)
Other possible causes include migraine (with or without headache, called "hemiplegic migraine") or a vascular problem in the brain such as a malformation of the blood vessels (which is what an MRA--magnetic resonance angiogram, I believe--checks for). Beyond that, there are scads of diseases which can cause those kind of symptoms, and I'm no expert in genetics or anything but I believe most can be ruled out by CT, MRI, MRA, EEG, EMG, etc. The point is, a good neurologist will be able to know from your son's particular symptoms which of these tests are necessary to rule out any serious conditions. But I can't believe they wouldn't do *anything* to get a look at his brain or his nerve conduction.
Get a second opinion, and if at all possible, make phone calls until you find a neurologist who has some familiarity with autistic children.
I hope that helps!!
-Heather.
We took him to the Children's Hospital in Birmingham, Alabama (we live in south Alabama) by referral by my pediatrician. A neurologist evaluated him, but they never called in an autism specialist. The neurologist said that his responses to being poked with pins was not consistent so she felt like he might be faking. (He is touch sensitive and the more they poked him, the more severe his response, no matter what side of his body!) I kept telling them he was autistic and they kept telling me that it didn't matter, that he should respond like a normal child. I really felt like we weren't being heard! When we got back home and rechecked with the pediatrician, she was upset that all they did was poke him with pins for seven hours and they didn't even do any blood work, so she is trying to help us figure out what caused it! I feel so helpless, it is hard watching your child suffer and not being able to help them!
If paralysis involves neurological function... would a pediatric neurologist be a specialist doctor you could take him to? I don't think a regular pediatrician would have the specialty to deal with or figure out that sort of thing? Anyways, you could ask his regular pediatrician what sort of specialist he could be referred to. Temporary paralysis I think can signify lots of things. MS is one thing. I have an inlaw who has a lesion on his brain (it's not considered MS until you have two or more lesions since the M stands for multiple). He occasionally has had paralysis in his arm. I think I read that autistic children and teens (the article didn't mention adults and I'm not sure why) have a higher incidence of seizures. Not sure what country you live in or what health care you have. HMOs usually make you have a referral from your primary care physician and they do not like giving referrals out. I had autoimmune problems for years undiagnosed by my doctors because I had some lousy HMO or other through a university/college. Only got great treatment when I had a PPO, when I could choose the doctors, and just go to the specialist without being referred first... or get a referral quite openly and happily by a doctor.
Um, anyways, to me personally, it sounds like you need to see a specialist of some sort, and figuring out what type of specialist should be something his regular doctor needs to help you with.
Um, anyways, to me personally, it sounds like you need to see a specialist of some sort, and figuring out what type of specialist should be something his regular doctor needs to help you with.
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