ADHD meds for PANDAS?

[colleenrn]

Michele,

Did they rule out perianal strep? I know you have hit brick walls in trying to get Andrew switched to Zithromax. Could you increase the Omniseph to a treatment dose for a few weeks and see if that makes a difference? The treatment dose for strep in a child is 14mg/kg per day.

 

I know you have not been able to get Zithromax, but is it possible they would let you try Erythromycin? That is a macrolide antibiotic like Zithromax. It is OK to keep doing the Omniseph at a prophylactic dose and add 10 days of Erythromycin at a treatment dose. Just wondering if that may help.

Good luck.

Colleen

[EAMom]

Michele

 

my dd had vocal (throat sound) tics starting in feb 08 (FEVER jan 08). She also had "movements" which were elaborate measurement rituals. Maybe those were more like compulsions? They were primarily associated with eating and involved a repetitive checking/measuring (with her hands) of various parts of her body (checking for fat). One psychiatrist thought they might be chorioform movements.

 

All of these went away in July/Aug/Sept 08 after 6 weeks of Azith/Ibuprofen (started June 08). (Also switch from Lexapro to Prozac in mid-May 08.)

 

Yes, she was diagnosed with serotonin syndrome (akathesia, anger, defiance, dilated pupils) May 08...this resolved we stopped the lexapro but unfortunately, her Anorexia Nervosa simultaneously came back in full force (2 pieces bread in a 24 hour period). She also had severe flu-like symptoms from the lexapro withdrawal. We started the prozac to help with the lexapro withdrawal and also b/c we did see that SSRI's at least helped with her eating and OCD.

 

Her vocal tics (and movements to a mild degree, not as bad as last spring) are currently back. They returned (if I remember correctly) in Jan. Her sister was strep postive in late Dec. Also, dd got fifth's in Feb. which seemed to make the tics worse as well. They are improving now that it's been about a month since 5th's dz. We did notice that with our dd tics are the last symptom to show up and the last to leave.

 

Michele...your docs amaze me...throwing all these pscyh. drugs at you willy-nilly but they won't give you an Azith. rx. or a pred rx (for a burst) which is what your son really needs!!

 

Re itching...could your son have a yeast infection on his bottom?

[EAMom]

Here is a link on Dr. Amen/ADD. His common treatments for all types of ADD is also very interesting. (Of course PANDAS isn't mentioned but it still may be helpful.)

 

http://www.amenclinics.com/clinics/informa...-help/adhd-add/

[michele]

He may have yeast, she said it wasn't red enough for strep on the bottom. She gave him two pills for the possible worms. I wondered if the butt picking could be a tic or compulsion.

 

No we have not gotten anything more then Omnicef. She has not written the script for steroids either she was reading about it last time and didn't mention it today. I am a bit nervous about the burst anyhow since the tics have been more heightened since the addition of ADHD meds. The verbal tic is an echo or squeal. His other hand and feet tics are lessened now.

 

I am in process of seeing a new psychiatrist for Andrew. One who was recommended from a TSA mom in Cleveland named Dr. Miller. Also we are waiting for a new child neuro Dr. Witnitzer who works alot with ASD disorders. He may know a bit more about symptoms we are seeing. Our Dr. seems to not get the OCD component. I also put a call into his current psychiatrist about the current meds not seeming right for him.

 

Anyone want to sell me some Azith? I would love to try a intracellular antibiotic. It is crazy the lengths we would go to get antibiotics around here.

 

Michele

 

my dd had vocal (throat sound) tics starting in feb 08 (FEVER jan 08). She also had "movements" which were elaborate measurement rituals. Maybe those were more like compulsions? They were primarily associated with eating and involved a repetitive checking/measuring (with her hands) of various parts of her body (checking for fat). One psychiatrist thought they might be chorioform movements.

 

All of these went away in July/Aug/Sept 08 after 6 weeks of Azith/Ibuprofen (started June 08). (Also switch from Lexapro to Prozac in mid-May 08.)

 

Yes, she was diagnosed with serotonin syndrome (akathesia, anger, defiance, dilated pupils) May 08...this resolved we stopped the lexapro but unfortunately, her Anorexia Nervosa simultaneously came back in full force (2 pieces bread in a 24 hour period). She also had severe flu-like symptoms from the lexapro withdrawal. We started the prozac to help with the lexapro withdrawal and also b/c we did see that SSRI's at least helped with her eating and OCD.

 

Her vocal tics (and movements to a mild degree, not as bad as last spring) are currently back. They returned (if I remember correctly) in Jan. Her sister was strep postive in late Dec. Also, dd got fifth's in Feb. which seemed to make the tics worse as well. They are improving now that it's been about a month since 5th's dz. We did notice that with our dd tics are the last symptom to show up and the last to leave.

 

Michele...your docs amaze me...throwing all these pscyh. drugs at you willy-nilly but they won't give you an Azith. rx. or a pred rx (for a burst) which is what your son really needs!!

 

Re itching...could your son have a yeast infection on his bottom?

[melanie]

He may have yeast, she said it wasn't red enough for strep on the bottom. She gave him two pills for the possible worms. I wondered if the butt picking could be a tic or compulsion.

 

No we have not gotten anything more then Omnicef. She has not written the script for steroids either she was reading about it last time and didn't mention it today. I am a bit nervous about the burst anyhow since the tics have been more heightened since the addition of ADHD meds. The verbal tic is an echo or squeal. His other hand and feet tics are lessened now.

 

I am in process of seeing a new psychiatrist for Andrew. One who was recommended from a TSA mom in Cleveland named Dr. Miller. Also we are waiting for a new child neuro Dr. Witnitzer who works alot with ASD disorders. He may know a bit more about symptoms we are seeing. Our Dr. seems to not get the OCD component. I also put a call into his current psychiatrist about the current meds not seeming right for him.

 

Anyone want to sell me some Azith? I would love to try a intracellular antibiotic. It is crazy the lengths we would go to get antibiotics around here.

 

Michele

 

my dd had vocal (throat sound) tics starting in feb 08 (FEVER jan 08). She also had "movements" which were elaborate measurement rituals. Maybe those were more like compulsions? They were primarily associated with eating and involved a repetitive checking/measuring (with her hands) of various parts of her body (checking for fat). One psychiatrist thought they might be chorioform movements.

 

All of these went away in July/Aug/Sept 08 after 6 weeks of Azith/Ibuprofen (started June 08). (Also switch from Lexapro to Prozac in mid-May 08.)

 

Yes, she was diagnosed with serotonin syndrome (akathesia, anger, defiance, dilated pupils) May 08...this resolved we stopped the lexapro but unfortunately, her Anorexia Nervosa simultaneously came back in full force (2 pieces bread in a 24 hour period). She also had severe flu-like symptoms from the lexapro withdrawal. We started the prozac to help with the lexapro withdrawal and also b/c we did see that SSRI's at least helped with her eating and OCD.

 

Her vocal tics (and movements to a mild degree, not as bad as last spring) are currently back. They returned (if I remember correctly) in Jan. Her sister was strep postive in late Dec. Also, dd got fifth's in Feb. which seemed to make the tics worse as well. They are improving now that it's been about a month since 5th's dz. We did notice that with our dd tics are the last symptom to show up and the last to leave.

 

Michele...your docs amaze me...throwing all these pscyh. drugs at you willy-nilly but they won't give you an Azith. rx. or a pred rx (for a burst) which is what your son really needs!!

 

Re itching...could your son have a yeast infection on his bottom?

[melanie]

He may have yeast, she said it wasn't red enough for strep on the bottom. She gave him two pills for the possible worms. I wondered if the butt picking could be a tic or compulsion.

 

No we have not gotten anything more then Omnicef. She has not written the script for steroids either she was reading about it last time and didn't mention it today. I am a bit nervous about the burst anyhow since the tics have been more heightened since the addition of ADHD meds. The verbal tic is an echo or squeal. His other hand and feet tics are lessened now.

 

I am in process of seeing a new psychiatrist for Andrew. One who was recommended from a TSA mom in Cleveland named Dr. Miller. Also we are waiting for a new child neuro Dr. Witnitzer who works alot with ASD disorders. He may know a bit more about symptoms we are seeing. Our Dr. seems to not get the OCD component. I also put a call into his current psychiatrist about the current meds not seeming right for him.

 

Anyone want to sell me some Azith? I would love to try a intracellular antibiotic. It is crazy the lengths we would go to get antibiotics around here.

 

Michele

 

my dd had vocal (throat sound) tics starting in feb 08 (FEVER jan 08). She also had "movements" which were elaborate measurement rituals. Maybe those were more like compulsions? They were primarily associated with eating and involved a repetitive checking/measuring (with her hands) of various parts of her body (checking for fat). One psychiatrist thought they might be chorioform movements.

 

All of these went away in July/Aug/Sept 08 after 6 weeks of Azith/Ibuprofen (started June 08). (Also switch from Lexapro to Prozac in mid-May 08.)

 

Yes, she was diagnosed with serotonin syndrome (akathesia, anger, defiance, dilated pupils) May 08...this resolved we stopped the lexapro but unfortunately, her Anorexia Nervosa simultaneously came back in full force (2 pieces bread in a 24 hour period). She also had severe flu-like symptoms from the lexapro withdrawal. We started the prozac to help with the lexapro withdrawal and also b/c we did see that SSRI's at least helped with her eating and OCD.

 

Her vocal tics (and movements to a mild degree, not as bad as last spring) are currently back. They returned (if I remember correctly) in Jan. Her sister was strep postive in late Dec. Also, dd got fifth's in Feb. which seemed to make the tics worse as well. They are improving now that it's been about a month since 5th's dz. We did notice that with our dd tics are the last symptom to show up and the last to leave.

 

Michele...your docs amaze me...throwing all these pscyh. drugs at you willy-nilly but they won't give you an Azith. rx. or a pred rx (for a burst) which is what your son really needs!!

 

Re itching...could your son have a yeast infection on his bottom?

 

 

 

Let me know more why Prozac is a better ssri than lexapro? Danny does poorly with ssris im willing to try it again but why prozac instead of others will it help anger? He is also asd and tourettes on zithro on tenex ( i dont think its helping and on buspar I think thats helping HELP verbal tics have ruined our lifes I mean it cant go anywhere when will this end

 

Michele have you seen a DAN dr? Mine loves the zithro We have 3 Psys I keep them all for different reasons 1 will give me whatwver I suggest he knows little about pandas tourettes and ASD only likes rispedol and abilify not interested in those anymore been there done that the other wont listen to anything about Pandas only likes ASD stuff and the other is a neuro I had some blood work waiting for those results and last the dan dr I like him but Im always a little nervous he just likes vitamines his vitamines if you get that good luck to you Ill pray for you Melanie

[EAMom]

Melanie:

 

I don't know if prozac is "better" than lexapro. Lexapro is newer and supposed to have less drug interactions than Prozac which is why the docs oringinally rx'd it. However Prozac has been around a lot longer (longer track record...a good thing) and is approved for use in children. I'm sure Lexapro works well for some people, it just wasn't the right ssri for my dd. Also, less is known about Lexapro's use in kids which is also not a good thing.

 

SSRI's can be a little tricky since they are an individual thing, the drug that works for one person may not work as well for another, and vice versa.

 

Prozac seems to help with my dd's eating/anxiety/OCD/general mood. She hasn't been angry since the Azith. was started (except for some mild PANDAS flares). I think some of a lot of this is the Azith. controlling the strep but the Prozac may definitely be helping her mood too.

 

The other interesting thing about Prozac (I just learned) is that it has some anti-inflammatory properties http://www.pubmedcentral.nih.gov/articlere...i?artid=1876225 This may be beneficial for PANDAS kids (just like how pred, ibuprofen, azith. can help b/c they are anti-inflammatory). I don't know how other SSRI's compare in their anti-inflammatory properties.

[michele]

Interesting about seeing different psychiatrists. This may be where we are headed also. Did you have a hard time getting the ASD diagnosis with the TS? Just wondering because my son is showing some mild ASD symptoms and I have had no luck getting the neuro to diagnose yet although he will prescribe the abilify and risperdal which are often used in ASD. I have an appointment with a neuro and psychiatrist coming up who deal more with ASD and tourettes. I hate having to subject him to so many Dr's but I don't think we have found the right path yet. We did see a DAN! for awhile. We did all the blood work and diet and supplements. I agree with you it is too many vitmains and supplements. He wanted him to have chelation and be on Actos and GFCF. I was really confused because the medical community was so against it. The DAN! was seeing him as on the spectrum though. Very pricey also being he took no insurance. I would love to try the Azith though so maybe I should call him again. What meds are you currently on?

 

He may have yeast, she said it wasn't red enough for strep on the bottom. She gave him two pills for the possible worms. I wondered if the butt picking could be a tic or compulsion.

 

No we have not gotten anything more then Omnicef. She has not written the script for steroids either she was reading about it last time and didn't mention it today. I am a bit nervous about the burst anyhow since the tics have been more heightened since the addition of ADHD meds. The verbal tic is an echo or squeal. His other hand and feet tics are lessened now.

 

I am in process of seeing a new psychiatrist for Andrew. One who was recommended from a TSA mom in Cleveland named Dr. Miller. Also we are waiting for a new child neuro Dr. Witnitzer who works alot with ASD disorders. He may know a bit more about symptoms we are seeing. Our Dr. seems to not get the OCD component. I also put a call into his current psychiatrist about the current meds not seeming right for him.

 

Anyone want to sell me some Azith? I would love to try a intracellular antibiotic. It is crazy the lengths we would go to get antibiotics around here.

 

Michele

 

my dd had vocal (throat sound) tics starting in feb 08 (FEVER jan 08). She also had "movements" which were elaborate measurement rituals. Maybe those were more like compulsions? They were primarily associated with eating and involved a repetitive checking/measuring (with her hands) of various parts of her body (checking for fat). One psychiatrist thought they might be chorioform movements.

 

All of these went away in July/Aug/Sept 08 after 6 weeks of Azith/Ibuprofen (started June 08). (Also switch from Lexapro to Prozac in mid-May 08.)

 

Yes, she was diagnosed with serotonin syndrome (akathesia, anger, defiance, dilated pupils) May 08...this resolved we stopped the lexapro but unfortunately, her Anorexia Nervosa simultaneously came back in full force (2 pieces bread in a 24 hour period). She also had severe flu-like symptoms from the lexapro withdrawal. We started the prozac to help with the lexapro withdrawal and also b/c we did see that SSRI's at least helped with her eating and OCD.

 

Her vocal tics (and movements to a mild degree, not as bad as last spring) are currently back. They returned (if I remember correctly) in Jan. Her sister was strep postive in late Dec. Also, dd got fifth's in Feb. which seemed to make the tics worse as well. They are improving now that it's been about a month since 5th's dz. We did notice that with our dd tics are the last symptom to show up and the last to leave.

 

Michele...your docs amaze me...throwing all these pscyh. drugs at you willy-nilly but they won't give you an Azith. rx. or a pred rx (for a burst) which is what your son really needs!!

 

Re itching...could your son have a yeast infection on his bottom?

 

 

 

Let me know more why Prozac is a better ssri than lexapro? Danny does poorly with ssris im willing to try it again but why prozac instead of others will it help anger? He is also asd and tourettes on zithro on tenex ( i dont think its helping and on buspar I think thats helping HELP verbal tics have ruined our lifes I mean it cant go anywhere when will this end

 

Michele have you seen a DAN dr? Mine loves the zithro We have 3 Psys I keep them all for different reasons 1 will give me whatwver I suggest he knows little about pandas tourettes and ASD only likes rispedol and abilify not interested in those anymore been there done that the other wont listen to anything about Pandas only likes ASD stuff and the other is a neuro I had some blood work waiting for those results and last the dan dr I like him but Im always a little nervous he just likes vitamines his vitamines if you get that good luck to you Ill pray for you Melanie

[melanie]

Hi I think your in Ohio Im in NJ My DAN dr takes insurance Thank god hes like the only dr we have that takes insurance none of the psys or neuros take insurance Daniel takes tenex 1mg 2x day buspar 20mg per day still ticcing like crazy also he is taking taurine mag inostiol l carnitine zithromax nothing works i think i may resopt to a nother med I just dont know Its taking a toll on our family hes on Home instruction and the tescher never shows up maybe 2 hrs weekly were soposed to gt 10 Im tired of fighting with everyone I think maybe I should look for a live in school Im really confused and im at wits end I would hire a lawyer but what do I want what i need is someone to fix all of this (any one out there)

Melanie

[michele]

Mel,

Our insurance is a PPO. They won't pay if you go off their list. Our DAN! is independent and doesn't take insurance but gives receipts to be turned into insurance.

 

Your situation is a bit like ours because of the tics with the PDD symptoms. Does your child obsess on things he likes or wants? I would think your neuro or psychiatrist or DAN! would use a Spectrum Disorder antipsychotic med for the moods such as Risperdal or Abilify. Ask them about it since the tennex is not cutting it. The Abilify cut back on the tics. When we added the stimulants the tics worsened again. Right now we are using Strattera with the Abilify but are probably going to stop the Strattera soon because it doesn't seem to make a difference and he is more agitated. It has been trial and error with the stimulants. I am guessing what we really need is an anxiety med like prozac for the moods. I am working on it now. At least you got the azith we haven't had luck with ever despite seeing many Dr's.

 

I know what you mean about taking a toll. We are using behavior modification but it is very disruptive to the family. Look on line at Yahoo IEP group. They discuss cyber schools.

 

Thinking of ya,

Michele

Hi I think your in Ohio Im in NJ My DAN dr takes insurance Thank god hes like the only dr we have that takes insurance none of the psys or neuros take insurance Daniel takes tenex 1mg 2x day buspar 20mg per day still ticcing like crazy also he is taking taurine mag inostiol l carnitine zithromax nothing works i think i may resopt to a nother med I just dont know Its taking a toll on our family hes on Home instruction and the tescher never shows up maybe 2 hrs weekly were soposed to gt 10 Im tired of fighting with everyone I think maybe I should look for a live in school Im really confused and im at wits end I would hire a lawyer but what do I want what i need is someone to fix all of this (any one out there)

Melanie

[melanie]

Mel,

Our insurance is a PPO. They won't pay if you go off their list. Our DAN! is independent and doesn't take insurance but gives receipts to be turned into insurance.

 

Your situation is a bit like ours because of the tics with the PDD symptoms. Does your child obsess on things he likes or wants? I would think your neuro or psychiatrist or DAN! would use a Spectrum Disorder antipsychotic med for the moods such as Risperdal or Abilify. Ask them about it since the tennex is not cutting it. The Abilify cut back on the tics. When we added the stimulants the tics worsened again. Right now we are using Strattera with the Abilify but are probably going to stop the Strattera soon because it doesn't seem to make a difference and he is more agitated. It has been trial and error with the stimulants. I am guessing what we really need is an anxiety med like prozac for the moods. I am working on it now. At least you got the azith we haven't had luck with ever despite seeing many Dr's.

 

I know what you mean about taking a toll. We are using behavior modification but it is very disruptive to the family. Look on line at Yahoo IEP group. They discuss cyber schools.

 

Thinking of ya,

Michele

Hi I think your in Ohio Im in NJ My DAN dr takes insurance Thank god hes like the only dr we have that takes insurance none of the psys or neuros take insurance Daniel takes tenex 1mg 2x day buspar 20mg per day still ticcing like crazy also he is taking taurine mag inostiol l carnitine zithromax nothing works i think i may resopt to a nother med I just dont know Its taking a toll on our family hes on Home instruction and the tescher never shows up maybe 2 hrs weekly were soposed to gt 10 Im tired of fighting with everyone I think maybe I should look for a live in school Im really confused and im at wits end I would hire a lawyer but what do I want what i need is someone to fix all of this (any one out there)

Melanie

 

 

Hi Michele

 

Dans on some Buspar that seems to be helping a little bit Stratera worked great when he was about 9 hes almost 15 now we were on abilify it seemed to aggitate him but maybe it wasnt that cause hes off and still aggitated I have to go to go to work Ill write more later Thinking of you and your child too I hope this gets better soon melanie

[Healthnut]

My kids were mis-diagnosed with tics & A.D.D.

3-4 years later and many different doctors we found out they have P.A.N.D.A.S.

We went to Dr. K. he is very good. Here's his website. Hope this will help. http://www.webpediatrics.com/pandas.html

[Indigo]

What is ACTOS?