Meds for ADD? for PANDAS son?

[Pudgeo]

Since my 10 yr old got PANDAS his concentration is terrible. He is not hyper at all but very spacey and can't seem to remember things(like school work!)I have resigned myself to the fact that we will have to do meds since I've been trying for 8 months to get rid of the PANDAS and no luck..(IVIG, supplements, azithromycin and lots of other stuff)

 

What meds are used for this?? He still has some anxiety & OCD but I would say the concentration issue is the biggest(and lack of retention of school) ..Thanks for any input..Sarah

[Pudgeo]

Dr at Amen clinic wants us to do trials of dextradine, neurontin, geodon, and amantidine...geodon is my last choice!

[MomWithOCDSon]

Dr at Amen clinic wants us to do trials of dextradine, neurontin, geodon, and amantidine...geodon is my last choice!

 

 

Pudgeo --

 

My 12-year-old has had OCD since he was 6; we've only discovered PANDAS and we are trying antibiotic therapy now -- Augmentin -- in keeping with the "Saving Sammy" regimen. We're seeing some results, so we're somewhat hopeful. He's also always had signs of ADHD, too, though the OCD was so front and center that no one ever got far enough to address the ADHD. Also, it would seem that when the OCD/anxiety was under control or "in remission," the ADHD symptoms like distractability, forgetfulness, hyperactivity, etc. would also recede. We had several years of success with Lexapro for the OCD which, like I said, also seemed to address the ADHD.

 

Now we're trying the Augmentin and Luvox for the OCD, and the psychiatrist just prescribed Intuniv for the ADHD. He's making progress in many ways, but still struggling in others. Just keep fighting the good fight!

[Chemar]

MomwithOCDson

 

do be very watchful for bad side effects from Luvox....it robbed my son of personality and expression of his musical/artistic talents...really "zombied" him. It also triggered some rather odd psychotic behavior for him that stopped as soon as we withdrew him from it.

we eventually found far more effective relief from natural supps for his attention issues as well as his OCD (and tics)

[MomWithOCDSon]

MomwithOCDson

 

do be very watchful for bad side effects from Luvox....it robbed my son of personality and expression of his musical/artistic talents...really "zombied" him. It also triggered some rather odd psychotic behavior for him that stopped as soon as we withdrew him from it.

we eventually found far more effective relief from natural supps for his attention issues as well as his OCD (and tics)

 

 

Chemar --

 

Thanks for the heads-up; we'll definitely be watchful. I know that these various SSRI's can have different affects on different people. Thus far, no ill effects from the Luvox that we can determine. We would be thrilled to do everything the "natural" way, which is why we delayed using any drugs for as long as we could. But his OCD is VERY strong and interferes dramatically with his daily life without any pharmacological assistance whatsoever. He would essentially be room-bound, afraid of contaminants beyond the boundary of his doorway, too uncertain of each and every choice, daily panic attacks, etc. He would be completely incapacitated, in other words. We've tried a number of homeopathic and natural supplements, but they ceased being in any way effective after about the second year of his diagnosis. We've also tried other things that "zombied" him, as you say, but Luvox, at this current dosage anyway, is not one of them. And it hasn't stripped him of any of his more positive personality attributes either. The brain is truly a complex, miraculous organ, to have so many singularities and eccentricities among individuals!

[MomWithOCDSon]

Since my 10 yr old got PANDAS his concentration is terrible. He is not hyper at all but very spacey and can't seem to remember things(like school work!)I have resigned myself to the fact that we will have to do meds since I've been trying for 8 months to get rid of the PANDAS and no luck..(IVIG, supplements, azithromycin and lots of other stuff)

 

What meds are used for this?? He still has some anxiety & OCD but I would say the concentration issue is the biggest(and lack of retention of school) ..Thanks for any input..Sarah

 

If you read "Saving Sammy," you might recall that Strattera, a newer non-stimulant ADHD drug, was added to Sammy's regimen toward the end of his PANDAS recovery. I just exchanged a couple of emails with Beth Maloney, and Sammy is still on a low dose of Straterra today, for what that information is worth.

[Charlotte Mom]

Since my 10 yr old got PANDAS his concentration is terrible. He is not hyper at all but very spacey and can't seem to remember things(like school work!)I have resigned myself to the fact that we will have to do meds since I've been trying for 8 months to get rid of the PANDAS and no luck..(IVIG, supplements, azithromycin and lots of other stuff)

 

What meds are used for this?? He still has some anxiety & OCD but I would say the concentration issue is the biggest(and lack of retention of school) ..Thanks for any input..Sarah

 

If you read "Saving Sammy," you might recall that Strattera, a newer non-stimulant ADHD drug, was added to Sammy's regimen toward the end of his PANDAS recovery. I just exchanged a couple of emails with Beth Maloney, and Sammy is still on a low dose of Straterra today, for what that information is worth.

 

We tried Stratera on two separate occasions and it aggravated my daughter - this was pre-IVIG though - so maybe it works better after aggressive PANDAS treatment. We just go the IVIG done two weeks ago. Is concentration his only issue? Did the IVIG, supplements and Azithromycin help his OCD? What supplements did you try already for the concentration? Tenex seemed to help her the most. They just came out with a new time-released version of Tenex- it's called Intuniv. We just switched to this and so far so good. Now if we could only get the OCD and meltdowns to subside! I am disheartened to hear you had no luck with the IVIG and Azithromycin. Can I ask, what dose Azithromycin was he on? did you ever get up to the really high does like Sammy? We have her on a pretty low dose right now 250mg daily in the a.m. Did you consider the second IVIG - I have heard that some kids need two treatments and that the second treatment can occur 9 months after the first. Who is your doctor?

[MomWithOCDSon]

Since my 10 yr old got PANDAS his concentration is terrible. He is not hyper at all but very spacey and can't seem to remember things(like school work!)I have resigned myself to the fact that we will have to do meds since I've been trying for 8 months to get rid of the PANDAS and no luck..(IVIG, supplements, azithromycin and lots of other stuff)

 

What meds are used for this?? He still has some anxiety & OCD but I would say the concentration issue is the biggest(and lack of retention of school) ..Thanks for any input..Sarah

 

If you read "Saving Sammy," you might recall that Strattera, a newer non-stimulant ADHD drug, was added to Sammy's regimen toward the end of his PANDAS recovery. I just exchanged a couple of emails with Beth Maloney, and Sammy is still on a low dose of Straterra today, for what that information is worth.

 

We tried Stratera on two separate occasions and it aggravated my daughter - this was pre-IVIG though - so maybe it works better after aggressive PANDAS treatment. We just go the IVIG done two weeks ago. Is concentration his only issue? Did the IVIG, supplements and Azithromycin help his OCD? What supplements did you try already for the concentration? Tenex seemed to help her the most. They just came out with a new time-released version of Tenex- it's called Intuniv. We just switched to this and so far so good. Now if we could only get the OCD and meltdowns to subside! I am disheartened to hear you had no luck with the IVIG and Azithromycin. Can I ask, what dose Azithromycin was he on? did you ever get up to the really high does like Sammy? We have her on a pretty low dose right now 250mg daily in the a.m. Did you consider the second IVIG - I have heard that some kids need two treatments and that the second treatment can occur 9 months after the first. Who is your doctor?

 

I'm not sure if your questions are directed at my post or at Pudgeo's, but I'll go ahead with our story, and trust Pudgeo will follow.

 

We never did IVIG with our son . . . at least not as of yet. It's an option I suppose, but we're relatively new to the PANDAS thing and are attempting to move as carefully, advisedly and methodologically as we can. Because our son was diagnosed with OCD many years ago, prior to any suggestion of PANDAS, we've had a team of doctors -- pediatrician, psychiatrist, therapists, chiropractor -- on board for years. Most of them are skeptical about PANDAS but are supporting our insistence that we at least explore the possibility; the pediatrician has prescribed the abx (Augmentin, rather than Azithromycin).

 

Concentration is not my son's only issue; it seems to be interwoven with the OCD, which currently manifests primarily as contamination fears and unwanted thoughts. The OCD has "shape-shifted" over the years, however, so it's always a moving target. We saw a dramatic decrease in his contamination fears within 2 days of beginning the Augmentin (875 mg. twice daily and then eventually 1,000 mg. Augmentin XR, twice daily), but there was a plateauing of improvement after about 10 days; then he seemed to slide backward, with the contamination fears slowly creeping back in, despite remaining on the abx. What has remained a consistent improvement, however, is his overall emotional state. Whereas the contamination issues used to drive him to major emotional breakdowns and hysterics at points prior to the abx, we do not see nearly as many meltdowns these days, and the ones we do see are significantly less dramatic and shorter in duration. We continued with the abx for a total of about 6 weeks (2, three-week periods which a short break in between while we tried to assess whether or not the abx were actually having an effect).

 

He began taking the Intuniv (Tenex) almost exactly 3 weeks ago now, and we have seen a definite improvement in his ability to focus and concentrate; he remembers the order in which he needs to address tasks better, and his follow-through is much more efficient. All of this seems to help with the OCD because when he can focus on tasks and following through, there's less "room" for the unwanted OCD thoughts to take precedence in his mind. This seems to be similar to the support Straterra gave Sammy Maloney in his recovery.

 

For supplements, he's taken probiotics during the abx courses but we're easing off of those now so that we don't wind up with a potential yeast problem. He takes a multivitamin once daily, and a D3 and NAC twice daily. We've been using melatonin at night because he was having trouble falling asleep, and that problem has been entirely eradicated (thank goodness) now; he sleeps like a baby!

 

So, in short, while I could say that the Intuniv may be helping ease the meltdowns, also, because his focus is improved, I truly believe the abx has played a large part in that. I guess we'll have a better idea once he's been off the abx for a while; we're only on Day 2 post-abx at present! Crossed fingers!

[michele]

While we have never had large doses of antibiotics like Sammy, we did do the daily antibiotics 300 mg for a couple years Amoxicillin and Pen VK and Omnicef. We never saw great improvements while on them and he still had reoccurring episodes. Last Dec. we started adding multiple medications with a psychiatrist. Before that the neurologist had him on Abilify. We had upped it to 10 mg and it had stopped working after a year. The psychiatrist tried many stimulants and most of hem seemed to make him more hyper and impulsive. His attention span was also a concern to me because he couldn't stay on task at school and was falling behind. We did try Srattera when the concerta and adderall did not work. Strattera seemed to help but then he got bowel issues. Since he was on Omnicef and Strattera I don't know which was causing it but he was having diareah and his bottom got really raw. So we stopped them both. Then we went to Clonidine. It made him so lathargic but helped with the impulse. Since he also struggles with obsessive thoughts and anxiety we decided to try the tenex. It really has helped with focus and impulse and school work improved. Since his anxiety and OCD was still bad we added prozac to the tenex and also changed to Risperdal. Now he is on the three and is much better then before. I am hoping to get him off the risperdal but because he has bad meltdowns and anger I am scared to cut it out completely. You are right in that everybody responds differently and it is a game of trial and error to find the right meds and doses. I have talked to Dr. T and he said we can try the high dose Augmentin antibiotics. Maybe that is next if I do a phone consult or visit. He said he would help us to get him off the Rispedal. Also his encopresis is better now and so are the meltdowns that were a nightmare a few months ago.

 

Since my 10 yr old got PANDAS his concentration is terrible. He is not hyper at all but very spacey and can't seem to remember things(like school work!)I have resigned myself to the fact that we will have to do meds since I've been trying for 8 months to get rid of the PANDAS and no luck..(IVIG, supplements, azithromycin and lots of other stuff)

 

What meds are used for this?? He still has some anxiety & OCD but I would say the concentration issue is the biggest(and lack of retention of school) ..Thanks for any input..Sarah

 

If you read "Saving Sammy," you might recall that Strattera, a newer non-stimulant ADHD drug, was added to Sammy's regimen toward the end of his PANDAS recovery. I just exchanged a couple of emails with Beth Maloney, and Sammy is still on a low dose of Straterra today, for what that information is worth.

 

We tried Stratera on two separate occasions and it aggravated my daughter - this was pre-IVIG though - so maybe it works better after aggressive PANDAS treatment. We just go the IVIG done two weeks ago. Is concentration his only issue? Did the IVIG, supplements and Azithromycin help his OCD? What supplements did you try already for the concentration? Tenex seemed to help her the most. They just came out with a new time-released version of Tenex- it's called Intuniv. We just switched to this and so far so good. Now if we could only get the OCD and meltdowns to subside! I am disheartened to hear you had no luck with the IVIG and Azithromycin. Can I ask, what dose Azithromycin was he on? did you ever get up to the really high does like Sammy? We have her on a pretty low dose right now 250mg daily in the a.m. Did you consider the second IVIG - I have heard that some kids need two treatments and that the second treatment can occur 9 months after the first. Who is your doctor?

 

I'm not sure if your questions are directed at my post or at Pudgeo's, but I'll go ahead with our story, and trust Pudgeo will follow.

 

We never did IVIG with our son . . . at least not as of yet. It's an option I suppose, but we're relatively new to the PANDAS thing and are attempting to move as carefully, advisedly and methodologically as we can. Because our son was diagnosed with OCD many years ago, prior to any suggestion of PANDAS, we've had a team of doctors -- pediatrician, psychiatrist, therapists, chiropractor -- on board for years. Most of them are skeptical about PANDAS but are supporting our insistence that we at least explore the possibility; the pediatrician has prescribed the abx (Augmentin, rather than Azithromycin).

 

Concentration is not my son's only issue; it seems to be interwoven with the OCD, which currently manifests primarily as contamination fears and unwanted thoughts. The OCD has "shape-shifted" over the years, however, so it's always a moving target. We saw a dramatic decrease in his contamination fears within 2 days of beginning the Augmentin (875 mg. twice daily and then eventually 1,000 mg. Augmentin XR, twice daily), but there was a plateauing of improvement after about 10 days; then he seemed to slide backward, with the contamination fears slowly creeping back in, despite remaining on the abx. What has remained a consistent improvement, however, is his overall emotional state. Whereas the contamination issues used to drive him to major emotional breakdowns and hysterics at points prior to the abx, we do not see nearly as many meltdowns these days, and the ones we do see are significantly less dramatic and shorter in duration. We continued with the abx for a total of about 6 weeks (2, three-week periods which a short break in between while we tried to assess whether or not the abx were actually having an effect).

 

He began taking the Intuniv (Tenex) almost exactly 3 weeks ago now, and we have seen a definite improvement in his ability to focus and concentrate; he remembers the order in which he needs to address tasks better, and his follow-through is much more efficient. All of this seems to help with the OCD because when he can focus on tasks and following through, there's less "room" for the unwanted OCD thoughts to take precedence in his mind. This seems to be similar to the support Straterra gave Sammy Maloney in his recovery.

 

For supplements, he's taken probiotics during the abx courses but we're easing off of those now so that we don't wind up with a potential yeast problem. He takes a multivitamin once daily, and a D3 and NAC twice daily. We've been using melatonin at night because he was having trouble falling asleep, and that problem has been entirely eradicated (thank goodness) now; he sleeps like a baby!

 

So, in short, while I could say that the Intuniv may be helping ease the meltdowns, also, because his focus is improved, I truly believe the abx has played a large part in that. I guess we'll have a better idea once he's been off the abx for a while; we're only on Day 2 post-abx at present! Crossed fingers!

[michele]

What are you all doing for attention and impulse for PANDAS kids? My son is on Intuniv 3 mg a day but still is acting impulsive and his attention and short term processing is slow. I just wish there was a better med to try but all stimulants made him manic and he has severe ADHD.

 

 

While we have never had large doses of antibiotics like Sammy, we did do the daily antibiotics 300 mg for a couple years Amoxicillin and Pen VK and Omnicef. We never saw great improvements while on them and he still had reoccurring episodes. Last Dec. we started adding multiple medications with a psychiatrist. Before that the neurologist had him on Abilify. We had upped it to 10 mg and it had stopped working after a year. The psychiatrist tried many stimulants and most of hem seemed to make him more hyper and impulsive. His attention span was also a concern to me because he couldn't stay on task at school and was falling behind. We did try Srattera when the concerta and adderall did not work. Strattera seemed to help but then he got bowel issues. Since he was on Omnicef and Strattera I don't know which was causing it but he was having diareah and his bottom got really raw. So we stopped them both. Then we went to Clonidine. It made him so lathargic but helped with the impulse. Since he also struggles with obsessive thoughts and anxiety we decided to try the tenex. It really has helped with focus and impulse and school work improved. Since his anxiety and OCD was still bad we added prozac to the tenex and also changed to Risperdal. Now he is on the three and is much better then before. I am hoping to get him off the risperdal but because he has bad meltdowns and anger I am scared to cut it out completely. You are right in that everybody responds differently and it is a game of trial and error to find the right meds and doses. I have talked to Dr. T and he said we can try the high dose Augmentin antibiotics. Maybe that is next if I do a phone consult or visit. He said he would help us to get him off the Rispedal. Also his encopresis is better now and so are the meltdowns that were a nightmare a few months ago.

 

Since my 10 yr old got PANDAS his concentration is terrible. He is not hyper at all but very spacey and can't seem to remember things(like school work!)I have resigned myself to the fact that we will have to do meds since I've been trying for 8 months to get rid of the PANDAS and no luck..(IVIG, supplements, azithromycin and lots of other stuff)

 

What meds are used for this?? He still has some anxiety & OCD but I would say the concentration issue is the biggest(and lack of retention of school) ..Thanks for any input..Sarah

 

If you read "Saving Sammy," you might recall that Strattera, a newer non-stimulant ADHD drug, was added to Sammy's regimen toward the end of his PANDAS recovery. I just exchanged a couple of emails with Beth Maloney, and Sammy is still on a low dose of Straterra today, for what that information is worth.

 

We tried Stratera on two separate occasions and it aggravated my daughter - this was pre-IVIG though - so maybe it works better after aggressive PANDAS treatment. We just go the IVIG done two weeks ago. Is concentration his only issue? Did the IVIG, supplements and Azithromycin help his OCD? What supplements did you try already for the concentration? Tenex seemed to help her the most. They just came out with a new time-released version of Tenex- it's called Intuniv. We just switched to this and so far so good. Now if we could only get the OCD and meltdowns to subside! I am disheartened to hear you had no luck with the IVIG and Azithromycin. Can I ask, what dose Azithromycin was he on? did you ever get up to the really high does like Sammy? We have her on a pretty low dose right now 250mg daily in the a.m. Did you consider the second IVIG - I have heard that some kids need two treatments and that the second treatment can occur 9 months after the first. Who is your doctor?

 

I'm not sure if your questions are directed at my post or at Pudgeo's, but I'll go ahead with our story, and trust Pudgeo will follow.

 

We never did IVIG with our son . . . at least not as of yet. It's an option I suppose, but we're relatively new to the PANDAS thing and are attempting to move as carefully, advisedly and methodologically as we can. Because our son was diagnosed with OCD many years ago, prior to any suggestion of PANDAS, we've had a team of doctors -- pediatrician, psychiatrist, therapists, chiropractor -- on board for years. Most of them are skeptical about PANDAS but are supporting our insistence that we at least explore the possibility; the pediatrician has prescribed the abx (Augmentin, rather than Azithromycin).

 

Concentration is not my son's only issue; it seems to be interwoven with the OCD, which currently manifests primarily as contamination fears and unwanted thoughts. The OCD has "shape-shifted" over the years, however, so it's always a moving target. We saw a dramatic decrease in his contamination fears within 2 days of beginning the Augmentin (875 mg. twice daily and then eventually 1,000 mg. Augmentin XR, twice daily), but there was a plateauing of improvement after about 10 days; then he seemed to slide backward, with the contamination fears slowly creeping back in, despite remaining on the abx. What has remained a consistent improvement, however, is his overall emotional state. Whereas the contamination issues used to drive him to major emotional breakdowns and hysterics at points prior to the abx, we do not see nearly as many meltdowns these days, and the ones we do see are significantly less dramatic and shorter in duration. We continued with the abx for a total of about 6 weeks (2, three-week periods which a short break in between while we tried to assess whether or not the abx were actually having an effect).

 

He began taking the Intuniv (Tenex) almost exactly 3 weeks ago now, and we have seen a definite improvement in his ability to focus and concentrate; he remembers the order in which he needs to address tasks better, and his follow-through is much more efficient. All of this seems to help with the OCD because when he can focus on tasks and following through, there's less "room" for the unwanted OCD thoughts to take precedence in his mind. This seems to be similar to the support Straterra gave Sammy Maloney in his recovery.

 

For supplements, he's taken probiotics during the abx courses but we're easing off of those now so that we don't wind up with a potential yeast problem. He takes a multivitamin once daily, and a D3 and NAC twice daily. We've been using melatonin at night because he was having trouble falling asleep, and that problem has been entirely eradicated (thank goodness) now; he sleeps like a baby!

 

So, in short, while I could say that the Intuniv may be helping ease the meltdowns, also, because his focus is improved, I truly believe the abx has played a large part in that. I guess we'll have a better idea once he's been off the abx for a while; we're only on Day 2 post-abx at present! Crossed fingers!

[MomWithOCDSon]

Michele --

 

Have you tried adding taurine? It is supposed to help with retrieval of short-term memory so that step-oriented tasks are easier and the "spaciness" can subside. For instance, there have been times where my DS would be in the shower, and he'd suddenly become distressed because he'd forgotten where he was in the process of washing up: "Did I wash my legs? I don't remember if I already washed my legs!" and so on. The Intuniv didn't seem to touch that, but the taurine has. Maybe it would help your child, also.

[Wilma Jenks]

Was the tauring activating at all. Most things make my girl so hyper.

[Angie Cook]

MomwithOCDson

 

do be very watchful for bad side effects from Luvox....it robbed my son of personality and expression of his musical/artistic talents...really "zombied" him. It also triggered some rather odd psychotic behavior for him that stopped as soon as we withdrew him from it.

we eventually found far more effective relief from natural supps for his attention issues as well as his OCD (and tics)

 

What supplements did you use for his attention?

[Chemar]

Hello Angie

 

we used a diet rich in Omega 3 as well as supplementing with it, and Gingko biloba

[MomWithOCDSon]

What supplements did you use for his attention?

 

We have found, over a period of about 3 years, that the two supplements excellent for my son's attention support are taurine and zinc. The zinc, especially, has been very beneficial, and there are some studies that back it up as a possible treatment for attention issues.