Strattera Experiences?

[Worried_Dad]

Hi, y'all:

 

I've probably posted enough about our son to bore you regulars to tears... ... but for the newbies, here's a quick summary.

 

Our son developed polyarthritis after a high fever in March 2007, followed 6 weeks later by seizure-like episodes and emotional lability. Originally diagnosed with ARF / SC and put on low-dose amoxil prophylaxis, which helped but didn't completely resolve symptoms. Taken off abx in June 2008, then had major overnight explosion of classic PANDAS symptoms in August 2008. Did IVIG with Dr. K in October 2008 and improved 70% over next 2 months, then caught another infection and spiraled downhill again. Worst exacerbation yet in March 2009, did 2 more rounds of IVIG with Dr. K in summer 2009. Only improved about 20-25% 4 months post-IVIG this time, then went on "Saving Sammy" mega-dose of augmentin XR and have been seeing steady, marked progress since then.

 

Whew! So here's my question. Our son's doing so much better, but he still has some major OCD rituals which he has not been able to conquer yet. Spoke with Beth Maloney on the phone about Sammy's recovery pattern a few weeks ago. She mentioned that she believes the introduction of Strattera really helped Sammy "push through those key OCD barriers" even after he started high-dose augmentin.

 

Frankly - due to nightmarish experiences with other psych meds in the last few years - we're awfully gun-shy about trying Strattera. It's primarily an ADHD med from what I can tell, rather than an OCD med. But our son does have some hyperactivity and difficulty focusing on homework (which is 180 degrees opposite of the way he was before PANDAS hit).

 

So has anyone tried Strattera? What kind of dosage, what symptoms/behaviors drove the decision to try it, and what did your PANDAS child experience as a result?

 

Thanks for sharing!

[faith]

worried dad,

forgive me, I must put this question out there, ... if a med like strattera is introduced, how do you know which is helping, is it the abx or is it the strattera? do we know if 'Sammy' is still on the strattera? If the augmentin was working so well, why did he need the med? It just worries me about the abx, if it doesn't work dramatically, then we start introducting other interventions, so how do we know what is the winner? If you give the strattera and he improves greatly, will you think it is the abx or will you give credit to the med? even right now, I wonder if I should even give additional supplements because I want to gauge the full impact of the abx, one way or the other.

 

This question for all on abx as well....

 

thanks

Faith

[MomWithOCDSon]

Hi, y'all:

 

I've probably posted enough about our son to bore you regulars to tears... ... but for the newbies, here's a quick summary.

 

Our son developed polyarthritis after a high fever in March 2007, followed 6 weeks later by seizure-like episodes and emotional lability. Originally diagnosed with ARF / SC and put on low-dose amoxil prophylaxis, which helped but didn't completely resolve symptoms. Taken off abx in June 2008, then had major overnight explosion of classic PANDAS symptoms in August 2008. Did IVIG with Dr. K in October 2008 and improved 70% over next 2 months, then caught another infection and spiraled downhill again. Worst exacerbation yet in March 2009, did 2 more rounds of IVIG with Dr. K in summer 2009. Only improved about 20-25% 4 months post-IVIG this time, then went on "Saving Sammy" mega-dose of augmentin XR and have been seeing steady, marked progress since then.

 

Whew! So here's my question. Our son's doing so much better, but he still has some major OCD rituals which he has not been able to conquer yet. Spoke with Beth Maloney on the phone about Sammy's recovery pattern a few weeks ago. She mentioned that she believes the introduction of Strattera really helped Sammy "push through those key OCD barriers" even after he started high-dose augmentin.

 

Frankly - due to nightmarish experiences with other psych meds in the last few years - we're awfully gun-shy about trying Strattera. It's primarily an ADHD med from what I can tell, rather than an OCD med. But our son does have some hyperactivity and difficulty focusing on homework (which is 180 degrees opposite of the way he was before PANDAS hit).

 

So has anyone tried Strattera? What kind of dosage, what symptoms/behaviors drove the decision to try it, and what did your PANDAS child experience as a result?

 

Thanks for sharing!

 

Dad --

 

I'm a newbie, so thanks for the background on your son! I'm learning a ton from this forum and all the experiences posted here, and it also helps to realize that my family is not alone in this whole PANDAS experience, though from the way doctors in my area respond to inquiries with regard to it, you'd think I'm from another planet!! Why such a lag in medical curiosity on this topic?!?! Sorry . . . another soapbox, another day!

 

Anyway, I'd noted the Straterra in "Saving Sammy" also and asked our psychiatrist about it. He responded that there's a fairly strong cross-correlation between OCD and ADD or ADHD in kids; however, he said that generally treating the anxiety/OCD was the first line of attack, and you didn't even mess with the ADHD until the OCD was under better control.

 

But what I'd noticed about our son over his 6 years of OCD diagnosis (just discovered PANDAS this year), was that when the OCD was recessive, he was a great, focused student; but when the OCD kicked up, he was all over the place, having trouble sitting still in class or focusing on classwork, etc. We'd thought about ADHD but, frankly, the OCD was such a bigger issue that we just pushed everything else to the side. Until I read "Sammy." So I pushed.

 

I think the initial reluctance to treat ADD or ADHD alongside OCD or PANDAS was because most of the medications were stimulants, and stimulants were counter-productive to the OCD. But now with non-stimulant ADHD meds like Straterra, you don't run into that problem. Our psychiatrist actually prescribed another, newer non-stimulant ADHD med called Intuniv. Our 12-year-old PANDAS son has been on 1 mg. for about 10 days, with only good results. He's more focused, has stopped complaining about being "itchy" and needing to walk around during class at school, etc. The protocol calls for us to step him up to 2 mg. now, but we're going to get his blood pressure tested first.

 

It's only a short history with the ADHD stuff thus far, but so far, so good!

[MomWithOCDSon]

worried dad,

forgive me, I must put this question out there, ... if a med like strattera is introduced, how do you know which is helping, is it the abx or is it the strattera? do we know if 'Sammy' is still on the strattera? If the augmentin was working so well, why did he need the med? It just worries me about the abx, if it doesn't work dramatically, then we start introducting other interventions, so how do we know what is the winner? If you give the strattera and he improves greatly, will you think it is the abx or will you give credit to the med? even right now, I wonder if I should even give additional supplements because I want to gauge the full impact of the abx, one way or the other.

 

This question for all on abx as well....

 

thanks

Faith

 

I know that Sammy was still on Strattera when he began his boarding high school, but I don't know if he still takes it now.

 

I get your concern about mixing strategies and then not knowing what's truly impacting. But, I have to say, I'm no scientist, and even if I DID try to conduct things in a "controlled" way in terms of treating my son, our doctors would still refer to it all as "anectodotal" and "untested."

 

So, I guess I'm more bent on helping my son, with anything and everything at my disposal, rather than definitively "proving" the efficacy of one strategy over another. Sammy's was mixed; he was taking Zyprexa and Augmentin and various other meds at various other stages of his recovery. Perhaps some or all of these things assist one another? I don't know. But I do know that I can't stand by and watch my son suffer for the sake of "proofing" one strategy at a time. I'll leave that to the NIMH controlled studies and others who can withstand that kind of rigor. He's just not up to it; it would incapacitate him.

 

So he's taking a number of things, including Augmentin XR and Intuniv. I know others may be reluctant to go this route, but I know it's the right one for us because he's made tremendous progress over the last couple of months. He went from being a home-bound, contamination-freaked, emotional meltdown mess to returning to school for 2/3 of a day, completing all his assignments, able to go to restaurants and malls and have a friend over, etc.

[Worried_Dad]

Thanks, Mom and Faith, for the feedback!

 

Faith, I understand your concern about introducing too many variables and not knowing which med actually did the trick when things improve. To be honest, we're still so excited about the progress our son's making on augmentin that we're planning to stay the course for now.

 

I'm really just investigating future options, in case progress stagnates. Since Beth mentioned that Strattera seemed to help Sammy get "over the hump" - and since our son's age at onset, symptoms, and progression are so similar to Sammy's - felt like it was worth considering as a contingency plan.

 

For now, we're going to stick with the augmentin and hope the trend continues. I'll keep you posted!

[melanie]

Thanks, Mom and Faith, for the feedback!

 

Faith, I understand your concern about introducing too many variables and not knowing which med actually did the trick when things improve. To be honest, we're still so excited about the progress our son's making on augmentin that we're planning to stay the course for now.

 

I'm really just investigating future options, in case progress stagnates. Since Beth mentioned that Strattera seemed to help Sammy get "over the hump" - and since our son's age at onset, symptoms, and progression are so similar to Sammy's - felt like it was worth considering as a contingency plan.

 

For now, we're going to stick with the augmentin and hope the trend continues. I'll keep you posted!

 

whats intrav?

[fuelforall]

Ds9 on Strattera for two months.

Hasn't done a thing. Still adhd. two in the am, two in the evening. Zip. Nada.

Switching from Abilify to Seroquel against my will. MY wife and the psychiatrist want it.

 

Wish it did so something. Not much has.

[MomWithOCDSon]

Ds9 on Strattera for two months.

Hasn't done a thing. Still adhd. two in the am, two in the evening. Zip. Nada.

Switching from Abilify to Seroquel against my will. MY wife and the psychiatrist want it.

 

Wish it did so something. Not much has.

 

Do you mind my asking, what exactly is your child's diagonosis?

 

During this latest exacerbation of OCD which began about 8 months ago, we tried both Seroquel and Abilify. Unfortunately can't recommend either, though I know that all depends upon a particular individual's response. Abilify did nothing but turn his stomach inside out. Seroquel, meanwhile, turned him into a zombie and put him to sleep. Is your child taking anything besides Straterra? I'm relatively new here, so I might've missed a previous thread on the topic. Sorry!

[fuelforall]

Do you mind my asking, what exactly is your child's diagonosis?

Marlon Brando in the Wild Ones was asked, what are you rebelling against? His response: whaddya got?

 

During this latest exacerbation of OCD which began about 8 months ago, we tried both Seroquel and Abilify. Unfortunately can't recommend either, though I know that all depends upon a particular individual's response. Abilify did nothing but turn his stomach inside out. Seroquel, meanwhile, turned him into a zombie and put him to sleep. Is your child taking anything besides Straterra? I'm relatively new here, so I might've missed a previous thread on the topic. Sorry!

 

Abilify seemed to help in short-term, did nothing in long term. Other Tenex like drugs made him sleepy so I guess Seroquel will do the same. He was on both Abilify ahd Strattera, now it wil be Seroquel and Strattera.

[smartyjones]

totally not the question you're asking but. . . have you done ibuprofen?

 

different situation b/c my son was doing well and then seemed to spiral into exacerbation with the flu, but ibuprofen did seem to help. don't know if that may help getting over the hump?

[Worried_Dad]

Yeah, we've been doing ibuprofen once a day for a while, more often during exacerbations. Does seem to help some, but not dramatic for our son. Thanks for the suggestion, though!

 

 

totally not the question you're asking but. . . have you done ibuprofen?

 

different situation b/c my son was doing well and then seemed to spiral into exacerbation with the flu, but ibuprofen did seem to help. don't know if that may help getting over the hump?