Nighttime tics and panic attacks

[MMC]

Sometimes at night (like tonight), our son's tics will become uncontrollable from head to toe and he cannot calm himself down. He has severe head tics, coughing spells and cannot catch his breath...like panic attacks. He is on 50 mg of amitriptyline at nighttime. We also give him benadryl...the dye free kind. But, these episodes can last an hour and my wife is at her wits end. Tonight, he just would not calm down. He had a birthday party yesterday and his friends slept over last night, so tonight, he was pretty tired I imagine. He spent a lot of time in our pool this weekend...which is not heavily chlorinated, but does have some. I know chlorine is suspected as a trigger. About the only time his tics don't bother him is when he is active, playing with his friends and so forth, so we hate to tell him to stay out of the pool.

 

We are trying to organize the Cunningham blood testing...and have consulted with Dr Latimer in DC. She is working with our pediatrician. They want to get the blood testing done, then start him on steroids for a month. It is taking so long to get this started, we are very frustrated.

 

So, if anyone has any meds that work well at night, we could request these from his local neurologist. Any ideas are appreciated.

 

Thanks,

MMC

[michele]

Clonidine was started with my son for the late afternoon/night issues we were experiencing. It relaxes them and makes sleep easier and helps with the tics. He has not had any meltdowns since we started it! He is going along easier with things also. I wish we would have tried it years ago! He takes half of .01 mg. Script says can give twice a day. I have only been doing it in the PM. He takes something else in the morning Abilify 15 mg and celexa 20 mg. He is still hyperfocused on his thoughts so I am guessing the celexa needs highered. He fixates on things he likes and searched them online for hours. We were getting ready to change to Risperdal and stop abilify but the Clonidine alone has helped so for now we will stick with the rest. Good luck.

 

I didn't know Cunningham could consult with your ped. Will you have your ped call her? We are seeing her in end of July coming from OH. Is she doing the steroids without ever seeing him? We had the blood tests done and they were positive for PANDAS, now I wonder if we could do the phone consult also. Did she suggest steroids before IVIG? We have never tried the steroids and wonder should that be done first before IVIG?

 

Thanks,

Michele

Sometimes at night (like tonight), our son's tics will become uncontrollable from head to toe and he cannot calm himself down. He has severe head tics, coughing spells and cannot catch his breath...like panic attacks. He is on 50 mg of amitriptyline at nighttime. We also give him benadryl...the dye free kind. But, these episodes can last an hour and my wife is at her wits end. Tonight, he just would not calm down. He had a birthday party yesterday and his friends slept over last night, so tonight, he was pretty tired I imagine. He spent a lot of time in our pool this weekend...which is not heavily chlorinated, but does have some. I know chlorine is suspected as a trigger. About the only time his tics don't bother him is when he is active, playing with his friends and so forth, so we hate to tell him to stay out of the pool.

 

We are trying to organize the Cunningham blood testing...and have consulted with Dr Latimer in DC. She is working with our pediatrician. They want to get the blood testing done, then start him on steroids for a month. It is taking so long to get this started, we are very frustrated.

 

So, if anyone has any meds that work well at night, we could request these from his local neurologist. Any ideas are appreciated.

 

Thanks,

MMC

[MMC]

Thanks for the reply. Dr Latimer mentioned Clonidine. We will need to ask his local neuro doc to see if we can get a prescription. If this would help with the meltdowns, it would be wonderful. We are resisting Risperdal b/c of the potential side effects we have heard about. Is your son school age? How is he in school with the clonidine? Our son is out of school presently for the 5-week summer track out. When he was in school, he was not taking the amitriptylene in the morning b/c he did not want to be sleepy...so, he really struggled in school (grade 4). He just got PANDAS back in March, so this is new for him. But our daughter has had it for 8 years, and thankfully her case is mild comparitively. (I was diagnosed with SC at age 7, but was really more like PANDAS). So, this is a genetic flaw coming from my side.

 

Dr Latimer consulted with our ped after we consulted with her over the phone for one hour recently. That was an expensive hour...but will be well worth it of course if things improve. She and our ped really want the blood tests done (on both) before they do any steroids. This is the plan of action at this point. Do a one month steroid burst and then maybe antibiotics. We are not at the point of considering IVIG or PEX...she said if we got to this point, we would need to make the trip to DC. Our son has had very little OCD symptoms...he mainly has severe tics. But my wife is noticing more OCD traits lately she said. At this time, we are just waiting for Cunningham's office to send us the kit and instructions on the blood tests...this is taking soooooo long to get started, we are going crazy.

 

Thanks,

Mark

 

Clonidine was started with my son for the late afternoon/night issues we were experiencing. It relaxes them and makes sleep easier and helps with the tics. He has not had any meltdowns since we started it! He is going along easier with things also. I wish we would have tried it years ago! He takes half of .01 mg. Script says can give twice a day. I have only been doing it in the PM. He takes something else in the morning Abilify 15 mg and celexa 20 mg. He is still hyperfocused on his thoughts so I am guessing the celexa needs highered. He fixates on things he likes and searched them online for hours. We were getting ready to change to Risperdal and stop abilify but the Clonidine alone has helped so for now we will stick with the rest. Good luck.

 

I didn't know Cunningham could consult with your ped. Will you have your ped call her? We are seeing her in end of July coming from OH. Is she doing the steroids without ever seeing him? We had the blood tests done and they were positive for PANDAS, now I wonder if we could do the phone consult also. Did she suggest steroids before IVIG? We have never tried the steroids and wonder should that be done first before IVIG?

 

Thanks,

Michele

Sometimes at night (like tonight), our son's tics will become uncontrollable from head to toe and he cannot calm himself down. He has severe head tics, coughing spells and cannot catch his breath...like panic attacks. He is on 50 mg of amitriptyline at nighttime. We also give him benadryl...the dye free kind. But, these episodes can last an hour and my wife is at her wits end. Tonight, he just would not calm down. He had a birthday party yesterday and his friends slept over last night, so tonight, he was pretty tired I imagine. He spent a lot of time in our pool this weekend...which is not heavily chlorinated, but does have some. I know chlorine is suspected as a trigger. About the only time his tics don't bother him is when he is active, playing with his friends and so forth, so we hate to tell him to stay out of the pool.

 

We are trying to organize the Cunningham blood testing...and have consulted with Dr Latimer in DC. She is working with our pediatrician. They want to get the blood testing done, then start him on steroids for a month. It is taking so long to get this started, we are very frustrated.

 

So, if anyone has any meds that work well at night, we could request these from his local neurologist. Any ideas are appreciated.

 

Thanks,

MMC

[michele]

He only did Abilify and Celexa in school and neither made him tired but helped with his concentration. I don't think I would like him to take the clonidine before school because he gets kind of tired. After school would be the perfect time. My son's OCd is very fixed thoughts and interests that he gets cauht up in for hours a day. Then when he doesn't get soemthing he can't take it and looses control.

We did get back the Cunningham studies. It was in about two weeks. Now I am not sure what to do with the results. I am hoping Latimer will know what to do. We have done the antibiotics and they aren't really that helpful. He still gets problems while on it. I am wondering what the next step should be. I have been to local neuro, innumologist, psychologist, psychiatrists, rheumatologists, and none of them have helped us. In fact now that he has bowel issues with soiling himself none of our Dr's want to step up and be the one to help. Is it a neuro issue from the PANDAS, a psychological issue from the behaviors, a medical issue from the meds? No Dr. is helping us and I am frustrated. i have a load going now from an accient he just had. About three a day! I don't know if we should see a psychologist or a GI Dr. Just what we needed was to add another specialty to the mix!

 

 

 

Thanks for the reply. Dr Latimer mentioned Clonidine. We will need to ask his local neuro doc to see if we can get a prescription. If this would help with the meltdowns, it would be wonderful. We are resisting Risperdal b/c of the potential side effects we have heard about. Is your son school age? How is he in school with the clonidine? Our son is out of school presently for the 5-week summer track out. When he was in school, he was not taking the amitriptylene in the morning b/c he did not want to be sleepy...so, he really struggled in school (grade 4). He just got PANDAS back in March, so this is new for him. But our daughter has had it for 8 years, and thankfully her case is mild comparitively. (I was diagnosed with SC at age 7, but was really more like PANDAS). So, this is a genetic flaw coming from my side.

 

Dr Latimer consulted with our ped after we consulted with her over the phone for one hour recently. That was an expensive hour...but will be well worth it of course if things improve. She and our ped really want the blood tests done (on both) before they do any steroids. This is the plan of action at this point. Do a one month steroid burst and then maybe antibiotics. We are not at the point of considering IVIG or PEX...she said if we got to this point, we would need to make the trip to DC. Our son has had very little OCD symptoms...he mainly has severe tics. But my wife is noticing more OCD traits lately she said. At this time, we are just waiting for Cunningham's office to send us the kit and instructions on the blood tests...this is taking soooooo long to get started, we are going crazy.

 

Thanks,

Mark

 

Clonidine was started with my son for the late afternoon/night issues we were experiencing. It relaxes them and makes sleep easier and helps with the tics. He has not had any meltdowns since we started it! He is going along easier with things also. I wish we would have tried it years ago! He takes half of .01 mg. Script says can give twice a day. I have only been doing it in the PM. He takes something else in the morning Abilify 15 mg and celexa 20 mg. He is still hyperfocused on his thoughts so I am guessing the celexa needs highered. He fixates on things he likes and searched them online for hours. We were getting ready to change to Risperdal and stop abilify but the Clonidine alone has helped so for now we will stick with the rest. Good luck.

 

I didn't know Cunningham could consult with your ped. Will you have your ped call her? We are seeing her in end of July coming from OH. Is she doing the steroids without ever seeing him? We had the blood tests done and they were positive for PANDAS, now I wonder if we could do the phone consult also. Did she suggest steroids before IVIG? We have never tried the steroids and wonder should that be done first before IVIG?

 

Thanks,

Michele

Sometimes at night (like tonight), our son's tics will become uncontrollable from head to toe and he cannot calm himself down. He has severe head tics, coughing spells and cannot catch his breath...like panic attacks. He is on 50 mg of amitriptyline at nighttime. We also give him benadryl...the dye free kind. But, these episodes can last an hour and my wife is at her wits end. Tonight, he just would not calm down. He had a birthday party yesterday and his friends slept over last night, so tonight, he was pretty tired I imagine. He spent a lot of time in our pool this weekend...which is not heavily chlorinated, but does have some. I know chlorine is suspected as a trigger. About the only time his tics don't bother him is when he is active, playing with his friends and so forth, so we hate to tell him to stay out of the pool.

 

We are trying to organize the Cunningham blood testing...and have consulted with Dr Latimer in DC. She is working with our pediatrician. They want to get the blood testing done, then start him on steroids for a month. It is taking so long to get this started, we are very frustrated.

 

So, if anyone has any meds that work well at night, we could request these from his local neurologist. Any ideas are appreciated.

 

Thanks,

MMC

[peglem]

He only did Abilify and Celexa in school and neither made him tired but helped with his concentration. I don't think I would like him to take the clonidine before school because he gets kind of tired. After school would be the perfect time. My son's OCd is very fixed thoughts and interests that he gets cauht up in for hours a day. Then when he doesn't get soemthing he can't take it and looses control.

We did get back the Cunningham studies. It was in about two weeks. Now I am not sure what to do with the results. I am hoping Latimer will know what to do. We have done the antibiotics and they aren't really that helpful. He still gets problems while on it. I am wondering what the next step should be. I have been to local neuro, innumologist, psychologist, psychiatrists, rheumatologists, and none of them have helped us. In fact now that he has bowel issues with soiling himself none of our Dr's want to step up and be the one to help. Is it a neuro issue from the PANDAS, a psychological issue from the behaviors, a medical issue from the meds? No Dr. is helping us and I am frustrated. i have a load going now from an accient he just had. About three a day! I don't know if we should see a psychologist or a GI Dr. Just what we needed was to add another specialty to the mix!

 

I'd take him to a GI doc, because, even if it is neurological, a GI should at least be able to tell you that...find a GI doc who is also a DO if you can. Personally, I don't think its possible to have a psychological issue that is not neurological. And there isn't a system in the body that operates separately from the CNS. The GI tract comes close, it has enervation that can operate nearly independently of the CNS...seems like a good GI guy would be familiar with the enteric nervous system (or I'm way too optimistic! )