Autism...now severe Tourettes as well

[Autic-GoodRiddance]

Ok...My son is 18, fell into Autism quickly after shots at 18 months. was diagnosed at 22 months, lost all speech after a tetanus shot at age 3.

Paul had been making slow, steady progress through age 13 or so...when he became extremely prompt dependent(still is) and began having some pretty crazy tics in 2007, sometimes they are almost constant, and all night, tensing and jerking all muscles in his body throwing his head back, grabbing his shoulder and crouching onto the floor with WIDE open mouth, etc....many sleepless nights. This has been going on roller coaster like for about 2 years. I finally gave in and took him to a Neurologist. He said it was quite obviously Tourettes and that he doesn't usually prescribe 2 meds but in his case he would. The meds are Risperdal and Paxil. I explained the he had been on Risperdal and that is when his tics began. I did not tell him that I researched anti-psychotics and found that Tic disorders(Tardive Dyskinesia) is a possible permanent side effect of Risperdal. I mainly wanted a Diagnosis for Medwaiver and school purposes... that he would not give bc he said that is is part of Autism...? I had never heard such a thing. He REALLY wanted to sell those meds! I almost went back to agree to the meds just to get the DX...I am calling again today to try to get him to write something for his school bc they all say he does it for attention and apparently treat him with "less than respect" when he is tic-ing. His teacher thinks he is doing it for attention and tells others to IGNORE him. All he needs is a touch and he can gain control...they won't do it and he starts trembling, sweating and gets very red in the face...at times his heart skips beats.. I assume because of the tension and anxiety..any thoughts? I do have Sheila's book and am eternally grateful . before this book I could find NOTHING on treatments but meds...not going there...Lindy

[melanie]

Ok...My son is 18, fell into Autism quickly after shots at 18 months. was diagnosed at 22 months, lost all speech after a tetanus shot at age 3.

Paul had been making slow, steady progress through age 13 or so...when he became extremely prompt dependent(still is) and began having some pretty crazy tics in 2007, sometimes they are almost constant, and all night, tensing and jerking all muscles in his body throwing his head back, grabbing his shoulder and crouching onto the floor with WIDE open mouth, etc....many sleepless nights. This has been going on roller coaster like for about 2 years. I finally gave in and took him to a Neurologist. He said it was quite obviously Tourettes and that he doesn't usually prescribe 2 meds but in his case he would. The meds are Risperdal and Paxil. I explained the he had been on Risperdal and that is when his tics began. I did not tell him that I researched anti-psychotics and found that Tic disorders(Tardive Dyskinesia) is a possible permanent side effect of Risperdal. I mainly wanted a Diagnosis for Medwaiver and school purposes... that he would not give bc he said that is is part of Autism...? I had never heard such a thing. He REALLY wanted to sell those meds! I almost went back to agree to the meds just to get the DX...I am calling again today to try to get him to write something for his school bc they all say he does it for attention and apparently treat him with "less than respect" when he is tic-ing. His teacher thinks he is doing it for attention and tells others to IGNORE him. All he needs is a touch and he can gain control...they won't do it and he starts trembling, sweating and gets very red in the face...at times his heart skips beats.. I assume because of the tension and anxiety..any thoughts? I do have Sheila's book and am eternally grateful . before this book I could find NOTHING on treatments but meds...not going there...Lindy

 

 

Hi

 

I have a simular situation with my son Hes 15 and has TS and ASD what a nightmare we have tried everything meds supplements diets etc some worked some didnt. I have him on Risperdal now because his behavior was so bad we didnt know what to do Hes a great kid who was suffering he curses and has some motor tics I hate using meds but for now its what we are going to do I know the choices are hard but your son is 18 and can make legal decisions Good luck melanie

[Autic-GoodRiddance]

Ok...My son is 18, fell into Autism quickly after shots at 18 months. was diagnosed at 22 months, lost all speech after a tetanus shot at age 3.

Paul had been making slow, steady progress through age 13 or so...when he became extremely prompt dependent(still is) and began having some pretty crazy tics in 2007, sometimes they are almost constant, and all night, tensing and jerking all muscles in his body throwing his head back, grabbing his shoulder and crouching onto the floor with WIDE open mouth, etc....many sleepless nights. This has been going on roller coaster like for about 2 years. I finally gave in and took him to a Neurologist. He said it was quite obviously Tourettes and that he doesn't usually prescribe 2 meds but in his case he would. The meds are Risperdal and Paxil. I explained the he had been on Risperdal and that is when his tics began. I did not tell him that I researched anti-psychotics and found that Tic disorders(Tardive Dyskinesia) is a possible permanent side effect of Risperdal. I mainly wanted a Diagnosis for Medwaiver and school purposes... that he would not give bc he said that is is part of Autism...? I had never heard such a thing. He REALLY wanted to sell those meds! I almost went back to agree to the meds just to get the DX...I am calling again today to try to get him to write something for his school bc they all say he does it for attention and apparently treat him with "less than respect" when he is tic-ing. His teacher thinks he is doing it for attention and tells others to IGNORE him. All he needs is a touch and he can gain control...they won't do it and he starts trembling, sweating and gets very red in the face...at times his heart skips beats.. I assume because of the tension and anxiety..any thoughts? I do have Sheila's book and am eternally grateful . before this book I could find NOTHING on treatments but meds...not going there...Lindy

 

 

Hi

 

I have a simular situation with my son Hes 15 and has TS and ASD what a nightmare we have tried everything meds supplements diets etc some worked some didnt. I have him on Risperdal now because his behavior was so bad we didnt know what to do Hes a great kid who was suffering he curses and has some motor tics I hate using meds but for now its what we are going to do I know the choices are hard but your son is 18 and can make legal decisions Good luck melanie

[Autic-GoodRiddance]

Melanie,

Ummm... My son is NOT at all able to make his own decisions. Yes he is 18, but he is severely disabled with Autism/Tourettes(profoundly cognitively disabled)...no speech, so academic skills, no math, no reading, no writing or freehand printing, nothing...he can sort of trace letters, no personal care skills, no knowledge of danger, must be supervised 24/7...I must shower him, brush his teeth and hair, shave him, etc...There is lots more I must do for him, but I have been doing it for 16 years these things I do without thinking any more. He is VERY cognitively disabled. He has always been in a self contained classroom. and is in a functional skills classroom where he shreds paper, folds clothes, cleans tables, etc. Or just sits there, tic-ing because he is so bored. He spends his time throwing stones, clothes, shoes, toys, videos, cups, dishes, whatever he has in his hot little hands onto the neighborhood rooftops and over the house or fences. He rocks back and forth in the driveway looking at the trees, sits in the bed of my truck, jumps into the air and then onto the ground, jumps over bird baths, dog jumps, fences, etc., throws the dogs over dog jumps, bird baths, fences, etc. jumps and pulls himself up on the basketball hoop, dangles beads over other items, or just sits in the dry bath tub for hours. I want so much more for him, but that cannot happen until I can find the keys to unlock him. Physically he looks like any other kid, but cognitively he is VERY disabled. He will NOT be making any decisions any time soon. He depends TOTALLY on me...I am the Lone Ranger.........single mom, and not getting younger. Lindy

 

 

Ok...My son is 18, fell into Autism quickly after shots at 18 months. was diagnosed at 22 months, lost all speech after a tetanus shot at age 3.

Paul had been making slow, steady progress through age 13 or so...when he became extremely prompt dependent(still is) and began having some pretty crazy tics in 2007, sometimes they are almost constant, and all night, tensing and jerking all muscles in his body throwing his head back, grabbing his shoulder and crouching onto the floor with WIDE open mouth, etc....many sleepless nights. This has been going on roller coaster like for about 2 years. I finally gave in and took him to a Neurologist. He said it was quite obviously Tourettes and that he doesn't usually prescribe 2 meds but in his case he would. The meds are Risperdal and Paxil. I explained the he had been on Risperdal and that is when his tics began. I did not tell him that I researched anti-psychotics and found that Tic disorders(Tardive Dyskinesia) is a possible permanent side effect of Risperdal. I mainly wanted a Diagnosis for Medwaiver and school purposes... that he would not give bc he said that is is part of Autism...? I had never heard such a thing. He REALLY wanted to sell those meds! I almost went back to agree to the meds just to get the DX...I am calling again today to try to get him to write something for his school bc they all say he does it for attention and apparently treat him with "less than respect" when he is tic-ing. His teacher thinks he is doing it for attention and tells others to IGNORE him. All he needs is a touch and he can gain control...they won't do it and he starts trembling, sweating and gets very red in the face...at times his heart skips beats.. I assume because of the tension and anxiety..any thoughts? I do have Sheila's book and am eternally grateful . before this book I could find NOTHING on treatments but meds...not going there...Lindy

 

 

Hi

 

I have a simular situation with my son Hes 15 and has TS and ASD what a nightmare we have tried everything meds supplements diets etc some worked some didnt. I have him on Risperdal now because his behavior was so bad we didnt know what to do Hes a great kid who was suffering he curses and has some motor tics I hate using meds but for now its what we are going to do I know the choices are hard but your son is 18 and can make legal decisions Good luck melanie

[melanie]

Melanie,

Ummm... My son is NOT at all able to make his own decisions. Yes he is 18, but he is severely disabled with Autism/Tourettes(profoundly cognitively disabled)...no speech, so academic skills, no math, no reading, no writing or freehand printing, nothing...he can sort of trace letters, no personal care skills, no knowledge of danger, must be supervised 24/7...I must shower him, brush his teeth and hair, shave him, etc...There is lots more I must do for him, but I have been doing it for 16 years these things I do without thinking any more. He is VERY cognitively disabled. He has always been in a self contained classroom. and is in a functional skills classroom where he shreds paper, folds clothes, cleans tables, etc. Or just sits there, tic-ing because he is so bored. He spends his time throwing stones, clothes, shoes, toys, videos, cups, dishes, whatever he has in his hot little hands onto the neighborhood rooftops and over the house or fences. He rocks back and forth in the driveway looking at the trees, sits in the bed of my truck, jumps into the air and then onto the ground, jumps over bird baths, dog jumps, fences, etc., throws the dogs over dog jumps, bird baths, fences, etc. jumps and pulls himself up on the basketball hoop, dangles beads over other items, or just sits in the dry bath tub for hours. I want so much more for him, but that cannot happen until I can find the keys to unlock him. Physically he looks like any other kid, but cognitively he is VERY disabled. He will NOT be making any decisions any time soon. He depends TOTALLY on me...I am the Lone Ranger.........single mom, and not getting younger. Lindy

 

 

Ok...My son is 18, fell into Autism quickly after shots at 18 months. was diagnosed at 22 months, lost all speech after a tetanus shot at age 3.

Paul had been making slow, steady progress through age 13 or so...when he became extremely prompt dependent(still is) and began having some pretty crazy tics in 2007, sometimes they are almost constant, and all night, tensing and jerking all muscles in his body throwing his head back, grabbing his shoulder and crouching onto the floor with WIDE open mouth, etc....many sleepless nights. This has been going on roller coaster like for about 2 years. I finally gave in and took him to a Neurologist. He said it was quite obviously Tourettes and that he doesn't usually prescribe 2 meds but in his case he would. The meds are Risperdal and Paxil. I explained the he had been on Risperdal and that is when his tics began. I did not tell him that I researched anti-psychotics and found that Tic disorders(Tardive Dyskinesia) is a possible permanent side effect of Risperdal. I mainly wanted a Diagnosis for Medwaiver and school purposes... that he would not give bc he said that is is part of Autism...? I had never heard such a thing. He REALLY wanted to sell those meds! I almost went back to agree to the meds just to get the DX...I am calling again today to try to get him to write something for his school bc they all say he does it for attention and apparently treat him with "less than respect" when he is tic-ing. His teacher thinks he is doing it for attention and tells others to IGNORE him. All he needs is a touch and he can gain control...they won't do it and he starts trembling, sweating and gets very red in the face...at times his heart skips beats.. I assume because of the tension and anxiety..any thoughts? I do have Sheila's book and am eternally grateful . before this book I could find NOTHING on treatments but meds...not going there...Lindy

 

 

Hi

 

I have a simular situation with my son Hes 15 and has TS and ASD what a nightmare we have tried everything meds supplements diets etc some worked some didnt. I have him on Risperdal now because his behavior was so bad we didnt know what to do Hes a great kid who was suffering he curses and has some motor tics I hate using meds but for now its what we are going to do I know the choices are hard but your son is 18 and can make legal decisions Good luck melanie

 

Hi

I hope I didnt offend you I know how hard autism and tourettes is believe me . I dont like using meds at all I hate it but It helped danny not get so angry to where we were looking for placement. He is much less angry now and able to do so many more things .I am using risperdal and it does have side effects but they all do.But so does staying in a home locked away because he was so angry.I was very thrilled when he first started the med not so much now it doesnt seem to be working he seems frusterated and very anxious I get the same way when hes like this were going away for a few days I think its also that he is at sleep away and were picking him up today. I know they are going to tell me he was cursing and angry I dont want to hear it . I am so confused 1/2 of the time .torn about what to do next The tics are so obvious cursing and he has a walking tic he stopps and kindof cracks his feet. Maybe that came from the meds?His neuro said he should increase the dose and it should help Hes on 1 mg a day risprerdal maybe ill increase it to see if it helps since i can keep a good eye on him all week Just know your not alone and theres lots of us out here that will listen when your tired. Im scared for him I want this to go away I hate tourettes I hate autism but I love Danny so Ill keep tring

 

Melanie

[Autic-GoodRiddance]

Melanie,

No, you did not offend me in any way...I want you to know also that you are not alone. You are a good mom to keep fighting for your son, I am there in the trenches with you. Have you tried Magnesium or GABA to help your son calm? I have given my son up to 2000Mg daily of Mg and 600 Mg GABA. I am now spraying with Magnesium Chloride as well. My son has reacted to most meds he has had and I have opted to avoid them. His main treatment now is Heilkunst www.heilkunst.com The first time he was on Risperdal in 2005 there were no changes good or bad. In 2007 he became EXTREMELY lethargic and I took him off it. This is when the tics became extremely obvious,preventing sleep. That is why I was upset that the NEUrologist looked at me like I was nuts when I told him his tics started when he was on Risperdal. These docs need to understand that we moms of Autistic kids know our kids better than ANYONE else, including the so-called experts.

Peace and Hugs, Lindy

 

Melanie,

Ummm... My son is NOT at all able to make his own decisions. Yes he is 18, but he is severely disabled with Autism/Tourettes(profoundly cognitively disabled)...no speech, so academic skills, no math, no reading, no writing or freehand printing, nothing...he can sort of trace letters, no personal care skills, no knowledge of danger, must be supervised 24/7...I must shower him, brush his teeth and hair, shave him, etc...There is lots more I must do for him, but I have been doing it for 16 years these things I do without thinking any more. He is VERY cognitively disabled. He has always been in a self contained classroom. and is in a functional skills classroom where he shreds paper, folds clothes, cleans tables, etc. Or just sits there, tic-ing because he is so bored. He spends his time throwing stones, clothes, shoes, toys, videos, cups, dishes, whatever he has in his hot little hands onto the neighborhood rooftops and over the house or fences. He rocks back and forth in the driveway looking at the trees, sits in the bed of my truck, jumps into the air and then onto the ground, jumps over bird baths, dog jumps, fences, etc., throws the dogs over dog jumps, bird baths, fences, etc. jumps and pulls himself up on the basketball hoop, dangles beads over other items, or just sits in the dry bath tub for hours. I want so much more for him, but that cannot happen until I can find the keys to unlock him. Physically he looks like any other kid, but cognitively he is VERY disabled. He will NOT be making any decisions any time soon. He depends TOTALLY on me...I am the Lone Ranger.........single mom, and not getting younger. Lindy

 

 

Ok...My son is 18, fell into Autism quickly after shots at 18 months. was diagnosed at 22 months, lost all speech after a tetanus shot at age 3.

Paul had been making slow, steady progress through age 13 or so...when he became extremely prompt dependent(still is) and began having some pretty crazy tics in 2007, sometimes they are almost constant, and all night, tensing and jerking all muscles in his body throwing his head back, grabbing his shoulder and crouching onto the floor with WIDE open mouth, etc....many sleepless nights. This has been going on roller coaster like for about 2 years. I finally gave in and took him to a Neurologist. He said it was quite obviously Tourettes and that he doesn't usually prescribe 2 meds but in his case he would. The meds are Risperdal and Paxil. I explained the he had been on Risperdal and that is when his tics began. I did not tell him that I researched anti-psychotics and found that Tic disorders(Tardive Dyskinesia) is a possible permanent side effect of Risperdal. I mainly wanted a Diagnosis for Medwaiver and school purposes... that he would not give bc he said that is is part of Autism...? I had never heard such a thing. He REALLY wanted to sell those meds! I almost went back to agree to the meds just to get the DX...I am calling again today to try to get him to write something for his school bc they all say he does it for attention and apparently treat him with "less than respect" when he is tic-ing. His teacher thinks he is doing it for attention and tells others to IGNORE him. All he needs is a touch and he can gain control...they won't do it and he starts trembling, sweating and gets very red in the face...at times his heart skips beats.. I assume because of the tension and anxiety..any thoughts? I do have Sheila's book and am eternally grateful . before this book I could find NOTHING on treatments but meds...not going there...Lindy

 

 

Hi

 

I have a simular situation with my son Hes 15 and has TS and ASD what a nightmare we have tried everything meds supplements diets etc some worked some didnt. I have him on Risperdal now because his behavior was so bad we didnt know what to do Hes a great kid who was suffering he curses and has some motor tics I hate using meds but for now its what we are going to do I know the choices are hard but your son is 18 and can make legal decisions Good luck melanie

 

Hi

I hope I didnt offend you I know how hard autism and tourettes is believe me . I dont like using meds at all I hate it but It helped danny not get so angry to where we were looking for placement. He is much less angry now and able to do so many more things .I am using risperdal and it does have side effects but they all do.But so does staying in a home locked away because he was so angry.I was very thrilled when he first started the med not so much now it doesnt seem to be working he seems frusterated and very anxious I get the same way when hes like this were going away for a few days I think its also that he is at sleep away and were picking him up today. I know they are going to tell me he was cursing and angry I dont want to hear it . I am so confused 1/2 of the time .torn about what to do next The tics are so obvious cursing and he has a walking tic he stopps and kindof cracks his feet. Maybe that came from the meds?His neuro said he should increase the dose and it should help Hes on 1 mg a day risprerdal maybe ill increase it to see if it helps since i can keep a good eye on him all week Just know your not alone and theres lots of us out here that will listen when your tired. Im scared for him I want this to go away I hate tourettes I hate autism but I love Danny so Ill keep tring

 

Melanie