SSRI- Low vs. higher dosing

[911RN]

In one of the other string of posts you said that PANDAS knowledgeable docs usually only order low dose Zoloft- not standard, higher doses. Or else, kids can become "activated". What did you mean by that? Are there any resources you can share where I can read more about this effect with SSRI's and PANDAS or is this mainly anecdotal from docs?

 

The reason I ask is my DS11 (113 lbs) was started on low dose Prozac 10 mg for OCD behavior a little over 3 weeks ago. He has had no negative effects- tolerating it fairly well. No adverse side effects but no real improvment in OCD behavior- about the same. His OCD behavior is not debilitating or pervasive. Just odd and quirky. I called update to Neuro (as requested) and his reply was to increase to 20 mg since he was on a really low dose. Now, I'm wondering if that is the right thing or wrong thing based on what you said about lower dosing being better for OCD PANDAS kids?? I am increasing to 15 mg for 5 days (on my own utilizing the meds I have) then going to 20 mg.

 

We treated my son this Spring for suspected PANDAS- motor and vocal tics resolved after 82 days of high dose Azithro. We have since stopped Azithro as we felt we had reached max benefit. OCD has stayed about the same. No better, no worse after stopping Azithro or adding Prozac. No further flares noted, Strep free.

 

BTW, the one thing that is NEW on Prozac is prolonged teeth grinding, in his sleep, at night- he has NEVER been a teeth grinder EVER in the past. Anyone ever see this emerge with SSRI's? I used to do so as a child- remember waking with my jaws aching:0) My older son (14) used to do it when he was much younger than his brother is now. This child has never has been a teeth grinder- until now- with addition of SSRI. Odd, huh? He stayed in our room over July 4th holidays as we had family guests in his room.Wow- I put my hand on his jaw a few times just to try to get him to stop since he was going at it!! Prolonged periods and multiple times per night. Woke me up! He was clenched so hard and tight it was like a snapping turtle! Could not have opened his jaws with two hands manually if you had tried with all your might. Afraid I am going to have to get a night guard if it continues so he doesn't ruin his teeth!

 

Next step is to wean Intuniv 1mg daily- he has been on it about a year. Some say that makes OCD worse? Any thoughts or knowledge on that? His OCD was not as bad in previous years so I wonder if that has been playing any role in his uptick in OCD behaviors. Want to wean Intuniv entirely after he is on Prozac for 6 weeks or so and see if it makes any difference??? Goal is just to get his med regime to lean and mean on Lamictal and Prozac only. Already discarded Fish Oil and Probiotics with no negative backlash.

 

Sorry, for so many questions but your comment struck a chord with me and our current situation. Just wanted to pluck your brain on the activation comment with higher dose SSRI's.

 

Thanks, in advance, for any feedback:) Also, is Zoloft preferred over other SSRI's? Neuro suggested Prozac to tamp down OCD and I just went wih his suggestion. Think he probably choose it because it is FDA approved for kids my son's age? I don't have any strong feelings pro or con on either one. This is a trial and learn for us. I'm a upstanding member of The Church of What Works- LOL! Don't know until you try.

[LNN]

I know Nancy will have a lot more to add to this - don't want to steal her thunder (and don't know near as much as her on this). But here is the article by Murphy and Storch that the forum members generally refer to when we use the term "activating":

http://www.primarypsychiatry.com/aspx/article_pf.aspx?articleid=561

 

Abstract:

Although selective serotonin reuptake inhibitors (SSRI) are an effective and commonly used treatment for pediatric obsessive-compulsive disorder (OCD), their use has come under close scrutiny following reports of adverse reactions. The authors of this case report believe that children with the OCD subtype, pediatric autoimmune neuropsychiatric disorders associated with streptococcus (PANDAS), may have increased vulnerability. The following report provides initial data on behavioral activation following SSRI use in 38 children with OCD of the PANDAS subtype. The authors use a particular case to highlight this issue and discuss treatment implications.

 

The jist is that Pandas kids only need a small SSRI dose to do what a "normal" dose will do in a "traditional" OCD kid. When you give a "normal" dose to a Pandas kids, they react in the opposite way you'd expect because you're actually giving too much. Just a smidge will do ya.

[trggirl]

If I remember correctly SSRI's activate CAMkinase II so that might be why PANDAs kids have problems. I think there is a study floating out there on this.

 

I can report on our experience on Intuniv. My daughter had terrible OCD on it. She went from quirky (I like that description you used) to debilitating. Some people have done well on it though so you never know.

[dcmom]

While I don't have it in front of me, I do think that Dr Murphy did successfully raise dosing in pandas kids, but it was a start low and move slow type schedule.

 

We tried low dose zoloft at 12.5 mg- did not really feel it did anything. We decided to stop, as our neuro wasn't really that into it. Our other issue is that our daughter's ocd/pandas has been a moving target this winter/ spring. It has been very hard to tell what works, and what is just the healing process....

 

I would not be against raising dosage though- see if you can look at that study- and move slowly. If it helps ocd that would be great!

[MomWithOCDSon]

Morning!

 

And thanks, Laura.

 

Yes, that Storch/Murphy paper is the only definitive source I know of that I'm referencing; the rest of my response is based on our experience.

 

We're now on our second psychiatrist since my DS (now 14) was diagnosed with OCD (PANDAS was waved off) at the age of 6. For the first 1.5 years, we used only CBT, no drugs, and like your DS, he was quirky but not debilitated. At age 8 (and I now realize, after being exposed to strep, though as he's classically asymptomatic, we didn't put it together at the time), he became debilitated by the OCD and we had to find a psych for prescribing because the CBT alone was not making him functional. He was prescribed low-dose Lexapro and life went on with the "quirkiness" but full functionality for another 4+ years.

 

When he had the Exacerbation to End All Exacerbations in May 2009, that original psych thought that the Lexapro had lost its effectiveness, so he wanted to transition DS to another SSRI; as I recall, we tried Zoloft for a short period but when it didn't seem to help within about 3 weeks, he prescribed an increase in the dosage. Not knowing any better, we bit off on that, but DS only sunk deeper into his OCD mire. After about 5 weeks on Zoloft, the psych decided it wasn't the right med for DS and transitioned him once again to Prozac. The pattern repeated itself wherein the introductory dosage didn't seem to do anything for him in the first couple of weeks, so the psych increased the dosage and DS continued to suffer.

 

Then, in October 2009, I rediscovered PANDAS and, more importantly in our case, found through "Saving Sammy" that despite the fact that DS had never shown any signs of an active strep infection, he could nonetheless be suffering its effects. ASO and AntiDnase-B blood tests confirmed that he had a whoppingly atypical amount of strep antigens coursing through his system, and I was able to convince his ped to give him an antibiotic prescription. That started him on the road to healing.

 

Still, he'd not been without an SSRI for years, and we were reluctant to remove that support for him, especially given our positive, long-term experience with Lexapro. So the psych continued to try and find an SSRI that he would respond positively to. We transitioned again, this time to Luvox, and began the same old pattern of beginning at a starter dose (which, arguably, may have even been too high to begin with), and increasing it when DS was not positively responsive. I can still hear the psych's voice in my head . . . very similar to what your doctor is telling you: "Well, you know, that's really a very low dose of XXXXX; we typically go as high as XXXX mg. in many cases." And they're the professionals, so you put yourself in their hands.

 

And then I found this forum and the Murphy paper as a result. So I took the iniatitive and halved DS's Luvox dosage myself. He was already on a better path, thanks to the abx, but he seemed to respond positively to lowering the Luvox also. I shared the paper with the psych, and he went "back to school" on his own and began to consult with some of the illuminaries of the OCD world, like Jenike et. al. While he still wasn't really buying PANDAS, he realized he'd erred in not giving an initial dose of an SSRI a full 6 weeks to reach full efficacy and had been increasing the dosage too quickly.

 

My DS was good for several months as the abx helped him, I think, and all the other stuff this forum led us to try, especially anti-inflammatory supplements. But then he began to falter again and, having been on the lower dose of Luvox for at least 2 months by that point, the psych suggested we try increasing it, and we agreed it was worth a try.

 

Here's what I mean by "activation:" his behaviors actually got WORSE. He became MORE anxious. His thoughts raced MORE. He had trouble focusing his attention (more than usual). He had trouble sitting still. His emotional lability increased. After watching that all ramp up for about 1 week, DH and I looked at each other and decided we were going to decrease the SSRI dosage again, and DS settled down within just a couple of days of reducing the dose.

 

Now, having seen first hand what too much SSRI can do to him, we're really careful about it. After hearing Dr. Storch speak at the IOCDF Conference last summer, I wanted to transition DS to Zoloft again; Storch's highly-regarded team vouches for its efficacy in pediatric OCD, and I suspected we hadn't given it a fair shot before because of the way in which it had been dosed. Once again, we started low and left the dosage level for 6 weeks. We changed psychs . . . found one that was familiar with PANDAS. Still, though, she doesn't have the "in the field experience" we do, and she initially said, "That's a really low dose; we typically go as high as XXXX in these cases." And she suggested we increase the Zoloft. We agreed to try it, and we videotaped the results so that she could see it for herself; after 2 days on the higher dose, he was "ramped up" again. More anxious, more volatile, more emotional. The works. We took the dose back down, showed her the video tape and vowed Never Again.

 

But with the low-dose Zoloft, we see that he's assisted. He's calmer, works his ERP exercises with less resistance, etc.

 

So, these psychs, as well-meaning and experienced as they may be, just don't get it. They find it hard to believe that someone could become "activated" at a dose that's still so far under the drug's recommended ceiling. But we've seen it no less than 3 times with our DS.

 

Also, something I found of a lot of interest. At last year's IOCDF Conference, I sat in on a session for researchers on OCD with comorbid conditions such as ASD, TS, ADHD, etc.; PANDAS seems to bring so much of that cormorbidity to the table, and I thought I might learn something. Dr. Storch sat on the panel, along with three other highly-regarded psychs and therapists. From everyone on the panel as well as the therapists in the room, the refrain was very clear: kids who exhibit comorbid behaviors generally benefit from LOWER, MORE CAREFULLY CONTROLLED MEDICATIONS, rather than standard doses or dosing schedules. I found it fascinating, the overlap between the "regular OCD world" and the "PANDAS world" in that respect.

 

So, in answer to your questions: 1) I would never again increase any SSRI dosage until my child has been taking the low, introductory dosage for at least 6 weeks. 2) I will always begin SSRI dosage at 1/2 what the doctor recommends and increase slowly from there. 3) The teeth-grinding MAY be some sort of "activation" behavior that's playing itself out in his sleeping brain? I don't know for sure, but you might try lowering the dose slightly and see if that behavior continues or eases off. 4) We've tried Intuniv with our DS, also. Initially, we thought we'd seen an improvement in his ability to focus in class, but that effect seemed to wane over time so we took him off and didn't see any increase in ADHD-type behaviors as a result. Personally, with our DS, I think all of the ADHD-type behaviors are really just a manifestation of his OCD/anxiety because when the OCD/anxiety is under control, his focus is just fine. So we've decided to "attack" the primary behavior and leave the rest to fade as we have success with the biggest monster. Sometimes we have to corral even the new psych in this regard because she, too, suffers from some of the "There's a drug for that!" mentality common of her species. But to her credit, she's invested some trust and patience in our knowledge and experience with our DS, and now that she's seeing it pay off, she's laid off that tendency. I just know you have to push back sometimes, is all.

 

Hope that answers things! If not, let me know and I'll try not to be so long-winded in any follow-up! Take care!

Edited July 14, 2011 by MomWithOCDSon

[911RN]

Morning!

 

And thanks, Laura.

 

Yes, that Storch/Murphy paper is the only definitive source I know of that I'm referencing; the rest of my response is based on our experience.

 

We're now on our second psychiatrist since my DS (now 14) was diagnosed with OCD (PANDAS was waved off) at the age of 6. For the first 1.5 years, we used only CBT, no drugs, and like your DS, he was quirky but not debilitated. At age 8 (and I now realize, after being exposed to strep, though as he's classically asymptomatic, we didn't put it together at the time), he became debilitated by the OCD and we had to find a psych for prescribing because the CBT alone was not making him functional. He was prescribed low-dose Lexapro and life went on with the "quirkiness" but full functionality for another 4+ years.

 

When he had the Exacerbation to End All Exacerbations in May 2009, that original psych thought that the Lexapro had lost its effectiveness, so he wanted to transition DS to another SSRI; as I recall, we tried Zoloft for a short period but when it didn't seem to help within about 3 weeks, he prescribed an increase in the dosage. Not knowing any better, we bit off on that, but DS only sunk deeper into his OCD mire. After about 5 weeks on Zoloft, the psych decided it wasn't the right med for DS and transitioned him once again to Prozac. The pattern repeated itself wherein the introductory dosage didn't seem to do anything for him in the first couple of weeks, so the psych increased the dosage and DS continued to suffer.

 

Then, in October 2009, I rediscovered PANDAS and, more importantly in our case, found through "Saving Sammy" that despite the fact that DS had never shown any signs of an active strep infection, he could nonetheless be suffering its effects. ASO and AntiDnase-B blood tests confirmed that he had a whoppingly atypical amount of strep antigens coursing through his system, and I was able to convince his ped to give him an antibiotic prescription. That started him on the road to healing.

 

Still, he'd not been without an SSRI for years, and we were reluctant to remove that support for him, especially given our positive, long-term experience with Lexapro. So the psych continued to try and find an SSRI that he would respond positively to. We transitioned again, this time to Luvox, and began the same old pattern of beginning at a starter dose (which, arguably, may have even been too high to begin with), and increasing it when DS was not positively responsive. I can still hear the psych's voice in my head . . . very similar to what your doctor is telling you: "Well, you know, that's really a very low dose of XXXXX; we typically go as high as XXXX mg. in many cases." And they're the professionals, so you put yourself in their hands.

 

And then I found this forum and the Murphy paper as a result. So I took the iniatitive and halved DS's Luvox dosage myself. He was already on a better path, thanks to the abx, but he seemed to respond positively to lowering the Luvox also. I shared the paper with the psych, and he went "back to school" on his own and began to consult with some of the illuminaries of the OCD world, like Jenike et. al. While he still wasn't really buying PANDAS, he realized he'd erred in not giving an initial dose of an SSRI a full 6 weeks to reach full efficacy and had been increasing the dosage too quickly.

 

My DS was good for several months as the abx helped him, I think, and all the other stuff this forum led us to try, especially anti-inflammatory supplements. But then he began to falter again and, having been on the lower dose of Luvox for at least 2 months by that point, the psych suggested we try increasing it, and we agreed it was worth a try.

 

Here's what I mean by "activation:" his behaviors actually got WORSE. He became MORE anxious. His thoughts raced MORE. He had trouble focusing his attention (more than usual). He had trouble sitting still. His emotional lability increased. After watching that all ramp up for about 1 week, DH and I looked at each other and decided we were going to decrease the SSRI dosage again, and DS settled down within just a couple of days of reducing the dose.

 

Now, having seen first hand what too much SSRI can do to him, we're really careful about it. After hearing Dr. Storch speak at the IOCDF Conference last summer, I wanted to transition DS to Zoloft again; Storch's highly-regarded team vouches for its efficacy in pediatric OCD, and I suspected we hadn't given it a fair shot before because of the way in which it had been dosed. Once again, we started low and left the dosage level for 6 weeks. We changed psychs . . . found one that was familiar with PANDAS. Still, though, she doesn't have the "in the field experience" we do, and she initially said, "That's a really low dose; we typically go as high as XXXX in these cases." And she suggested we increase the Zoloft. We agreed to try it, and we videotaped the results so that she could see it for herself; after 2 days on the higher dose, he was "ramped up" again. More anxious, more volatile, more emotional. The works. We took the dose back down, showed her the video tape and vowed Never Again.

 

But with the low-dose Zoloft, we see that he's assisted. He's calmer, works his ERP exercises with less resistance, etc.

 

So, these psychs, as well-meaning and experienced as they may be, just don't get it. They find it hard to believe that someone could become "activated" at a dose that's still so far under the drug's recommended ceiling. But we've seen it no less than 3 times with our DS.

 

Also, something I found of a lot of interest. At last year's IOCDF Conference, I sat in on a session for researchers on OCD with comorbid conditions such as ASD, TS, ADHD, etc.; PANDAS seems to bring so much of that cormorbidity to the table, and I thought I might learn something. Dr. Storch sat on the panel, along with three other highly-regarded psychs and therapists. From everyone on the panel as well as the therapists in the room, the refrain was very clear: kids who exhibit comorbid behaviors generally benefit from LOWER, MORE CAREFULLY CONTROLLED MEDICATIONS, rather than standard doses or dosing schedules. I found it fascinating, the overlap between the "regular OCD world" and the "PANDAS world" in that respect.

 

So, in answer to your questions: 1) I would never again increase any SSRI dosage until my child has been taking the low, introductory dosage for at least 6 weeks. 2) I will always begin SSRI dosage at 1/2 what the doctor recommends and increase slowly from there. 3) The teeth-grinding MAY be some sort of "activation" behavior that's playing itself out in his sleeping brain? I don't know for sure, but you might try lowering the dose slightly and see if that behavior continues or eases off. 4) We've tried Intuniv with our DS, also. Initially, we thought we'd seen an improvement in his ability to focus in class, but that effect seemed to wane over time so we took him off and didn't see any increase in ADHD-type behaviors as a result. Personally, with our DS, I think all of the ADHD-type behaviors are really just a manifestation of his OCD/anxiety because when the OCD/anxiety is under control, his focus is just fine. So we've decided to "attack" the primary behavior and leave the rest to fade as we have success with the biggest monster. Sometimes we have to corral even the new psych in this regard because she, too, suffers from some of the "There's a drug for that!" mentality common of her species. But to her credit, she's invested some trust and patience in our knowledge and experience with our DS, and now that she's seeing it pay off, she's laid off that tendency. I just know you have to push back sometimes, is all.

 

Hope that answers things! If not, let me know and I'll try not to be so long-winded in any follow-up! Take care!

 

Nancy and others- many thanks for all your prompt and detailed replies. I have no problems tweaking meds up or down based on what I see given an adequate adjustment time to any medication. I always like to do what the docs suggest or say first so they know I'm trying to listen to their advice; be a team player. Not a rebel playing by her own rulebook. However, if it does not give the intended response or adverse response then I'm all about some tweaking and changing- based on meds I have available to do so:0) Most of the time I get support from docs in the long run. Have even read in their consult notes- "Mom has settled on a dosage of XYZ of certain ABC medication" based on patient's response. LOL.

 

I will read the resources suggested on activation. It's funny how you say that these kids are sensitive with meds- I told new neuro that and he puzzed up- said that was unusual in his experience. Say most parents tell him their kids can take double of most other kids. Not my DS11- a little goes a long way I told him. That's why he was agreeable to 5 mg for a week before going to 10 mg of Prozac just to see how he would tolerate. Did OK and so I moved up.

 

I know what you are saying about too many meds in the pot and a medication for everything- don't know what is causing what. That's why I am looking to get him down to minimal number of meds. Clean slate, so to speak.Only prozac besides his Lamictal which is prescribed for abnormal EEG. He has had clear EEG's on med. Never has had a seizure and Lamictal cannot be weaned based on his particualr disorder until about age 15- if we are ever to do so successfully, at all- even then?? I'm wanting to see what the prozac does and then I may add some antiinflammatory type supplements in the Fall. Thinking of L-carnosine, Luteolin, Taurine, L-theanine. Will cross that bridge when I get to it. Used Insoitol/Choline for short time in past- in 2009- with good results also?? Neuro wanted me to stop when we changed AED so I did. Will only add one supplement at a time over sufficient period of time so I can get good feel for effect.

 

We, too, saw initial good response with Intuniv but it waned over the course of 5 months- went up to 3mg- severe fatigue and falling asleep daily in class at 2pm. Backed down to 1mg- OK- fatigue and sleeping stopped-but I don't think it adds much. Time to let it go.

 

Interesting about the teeth grinding- I will have to monitor. Gotta run- got to work:)

 

Thanks to everyone for replies!

Edited July 14, 2011 by 911RN

[MomWithOCDSon]

Only prozac besides his Lamictal which is prescribed for abnormal EEG. He has had clear EEG's on med. Never has had a seizure and Lamictal cannot be weaned based on his particualr disorder until about age 15- if we are ever to do so successfully, at all- even then??

 

We recently began lamictal ourselves, though DS has not had an abnormal EEG, ever. New psych recommended it as a mood stabilizer and glutamate modulating agent. So far, so good!

 

Curious, though, as to what makes your DS's "age 15" a magic point at which the lamictal could be weaned off? Is that based on brain maturity, or is it based on physical/hormonal maturity, do you know?

 

Always trying to tweeze out what role puberty is playing in our DS14's condition . . . convinced there's something to it, but it's all such a mixed bag, as you know.

 

Thanks!

[911RN]

If I remember correctly SSRI's activate CAMkinase II so that might be why PANDAs kids have problems. I think there is a study floating out there on this.

 

I can report on our experience on Intuniv. My daughter had terrible OCD on it. She went from quirky (I like that description you used) to debilitating. Some people have done well on it though so you never know.

 

 

I have been describing my son as "quirky" since he was 4 years old! Preschool teacher and I hit on that together and it just stuck:) I would have soooo liked to have known what his CamKinase II levels WERE/ARE:( However, his blood sits in lab untested, in OK, as part of the group tht was cut off when they shut down MC research project once they got to the 1000 samples so... I may never know until it's possible for testing again??

 

I used "jumping the sharp" analogy with doc on Intuniv... when we got too high on 3 mg and it turned DS11 to a tired noodle. From the old Happy Days program when Fonzie "jumped the shark"....they had gone too far:)

[michiganpandas]

Hi

we started at a "low" dose 20mg that i KNOW FOR SURE was too high....my daughter was wired the first few weeks....however, it was her first episode of pandas so i really can't totally judge.....we are still at it and that is all she is on.....she is "better" but, left with bad ocd fears/thoughts that she can calm herself down from (due to probably therapy)...but, i want them gone for her. I am considering upping it to 25mg....but, i could also easily consider lowering it to see if that helps!...i really wish we would have started with a lower dose than we did and then up it to the 20mg.....maybe the first increase in the zoloft does "activate" our kids in a bad way, but if we ride it out for a few weeks it helps?? i don't know....I just hate these decisions WE have to make.

[tpotter]

I would like to add that we found that other psychotropic meds also caused: "activation", and many meds, as a whole didn't work like they were supposed to. For instance, Adderol, Ritalin, etc. (for ADHD) made our DS extremely violent (swung a metal pole at my head in a split second). Benadryl made him hyper (now, interestingly, since doing IVIG, he seems to be fine with benedryl.) And, when he dislocated and broke his elbow in a skiing accident, they kept giving him morphine, but it barely dulled the pain (they ended up having to put him to sleep before setting it, and the next day he was seriously "activated.")

 

Now, since starting regular abx and doing PEX (and later IVIG), he takes no psychotropic meds at all (actually we stopped all those meds when we started treating for PANDAS, and later also for Lyme.) They just weren't needed anymore in our case.

[nicklemama]

DS had horrible time on Celexa. Initial dose didn't seem to do anything. Two months later, a dose increase caused terrible activiation in him. He was weaned off and, interestingly, started on lamictal. He's been on lamictal for a little over a yr now. It did help him, but not enough. He is 10wks post IVIG. We see Dr K in early August and we are going to wean him off the lamictal.

[MomWithOCDSon]

I would like to add that we found that other psychotropic meds also caused: "activation", and many meds, as a whole didn't work like they were supposed to. For instance, Adderol, Ritalin, etc. (for ADHD) made our DS extremely violent (swung a metal pole at my head in a split second). Benadryl made him hyper (now, interestingly, since doing IVIG, he seems to be fine with benedryl.) And, when he dislocated and broke his elbow in a skiing accident, they kept giving him morphine, but it barely dulled the pain (they ended up having to put him to sleep before setting it, and the next day he was seriously "activated.")

 

Now, since starting regular abx and doing PEX (and later IVIG), he takes no psychotropic meds at all (actually we stopped all those meds when we started treating for PANDAS, and later also for Lyme.) They just weren't needed anymore in our case.

 

I agree. My DS was also activated by Abilify. I've had two psychs now tell me NEVER use a stimulant (Ritalin, etc.) on a kid with OCD-type behaviors; it will drive them into another planetary orbit! I think that's why Intuniv and Straterra are sometimes recommended for the ADHD-type behaviors; they're both non-stimulant meds for the condition.

[911RN]

Only prozac besides his Lamictal which is prescribed for abnormal EEG. He has had clear EEG's on med. Never has had a seizure and Lamictal cannot be weaned based on his particualr disorder until about age 15- if we are ever to do so successfully, at all- even then??

 

We recently began lamictal ourselves, though DS has not had an abnormal EEG, ever. New psych recommended it as a mood stabilizer and glutamate modulating agent. So far, so good!

 

Curious, though, as to what makes your DS's "age 15" a magic point at which the lamictal could be weaned off? Is that based on brain maturity, or is it based on physical/hormonal maturity, do you know?

 

Always trying to tweeze out what role puberty is playing in our DS14's condition . . . convinced there's something to it, but it's all such a mixed bag, as you know.

 

Thanks!

 

You are on the right track. It's all the reasons you mentioned. My son is diagnosed with Landau Kleffner Syndrome (receptive speech regression at age 4 after normal G&D milestones and speech acquisition- expressive speech regression peaked at age 6-diagnosed LKS at age 8 with EEG findings)-the prevailing wisdom is they "outgrow" or "burn out" the abnormal EEG activity as a result of puberty- neuronal, maturational maturity. The brain begins to "prune" neuronal connections as a result of hormones with puberty. Hormones cause brain to look at all the "good" continuous, synaptic firing connections it has made for years and keeps the "good" ones.It prunes away the "bad" ones that don't make sense or ones that have been seldom used. "Neurons that fire together, wire together" is the addage. So, that you can turn into a rational, well thinking adult. No longer have the mind of a child.

 

That's why teenagers are such irrrational, braindead idiots:)Don't know if they are coming or going- just kidding.NOT!

 

Seriously, we have been trying to make as much progress in all facets of DS11's life before puberty because we are up against the puberty/hormone clock. Want to have all the "good connections" fully enforced and doing the good stuff- trying to make sure the bad ones are not kept. Make those bad ones be connections that are seldom used (by puberty) so the brain cuts off those useless connections- if that makes sense??!! We are playing "catch up" since he likley had 4 years of abnormal EEG activity that caused regression before it was noted, diagnosed and treated.

 

That's sorta where the old addage "you can't teach an ole' dog new tricks" comes from, also- we all have the greatest ability, in nearly all things, to elicit the easiest change and progress (in about anything) up until puberty. After that- it CAN be done... but it is more difficlt, takes longer and takes more practice, grit,fortitude and determination. Getting things done before puberty takes advantage of brain plasticity. This is pretty well accepted, well researched, mainstream neuroscience. Brain plasticity and retraining is possible as an adult- we all know that from strokes and brain injuries that recover.Yet, it is not nearly as easy and works with a different process of retraining other parts of brain to take over AND from forming some new connections. Not molding the prepubescent brain that is still receptive to tweaking and change for the better before hormones and puberty take over to "set" the adult brain. New neuronal dendrites and pathways are just easier to form before puberty.

 

That's why with any special needs kids- it is so important for early and continuous intervention to take advantage of this window of opportunity. Our window for the easiest behavioral and academic changes/progress is shrinking with onset of puberty. However, his chances for continued, abnormal EEG (past puberty) will diminish greatly if he has had clear EEG's as a result of meds until then... and the fact that LKS tends to just burn out abnormal EEG activity with puberty, anyway. Interestingly, the immune system matures with onset of puberty also and LKS is considered both an acquired epileptic/neuroinflammatory autoimmune type process mainly effecting temporal lobes of brain.

 

Crazy, nonsensical, misfiring dendrite connections and pathways should be pruned by age 15. Since, the theory is they should have been seldom used/connecting for years. Thus, no more abnormal EEG potential and no more need for AED. He has good receptive/expressive langauge, now (thankfully) but we are plugging away on the OCD behavior now (?PANDAS related) to try and get all that right before puberty (if possible).I'm not sure how pertinent this is for PANDAS if it is a basal ganglia inflammation, Cam Kinase II, antineuronal antibody activation type thing- in presence of infectious trigger. Mainly, what I spoke about above was in relation to abnormal LKS EEG activity and how our brains mature with puberty. Wanting to keep the good stuff and prune the previous bad connections.

 

I tell everyone- I am the only mother in the county that can't wait for this child to become a teenager- LKS supposedly kids gets "better" with onset of adolescence:) Unlike everyone else's teenagers...whom all go nuts!! His childhood has been stolen from him so I am anxiously awaiting. He has gradually improved over the last few years. Slow but sure progress. Now, we are left with the largely quirky, nondebilitating yet problematic OCD issues- seems like his basal ganglia is involved either by LKS process or PANDAS?? Unable to flesh out if it is two different processes or one and the same. Cause for LKS is unknown- thoughts are that it could be an infectious autoimmune trigger but not research proven. The OCD tends to have more impact on his social skills, attn, focusing, preference for sameness with food choices, sensory issues etc.

 

My older NT son (14) had a classic PANDAS flare at age 7- bizarre, uncharacteristic separation anxiety, handwriting decline, decline in math skills etc- not even recognized as such until we delved into PANDAS with younger son- this year! Older son rec'd long term antibiotics for persistent sinus infection at that time and coincidentally sxs went away. We never connected the two events at the time. Have not had a repeat of those PANDAS symptoms since.He was also diagnosed with a post Strep subacute glomerulonephritis, IgA nephropathy at that time. Attacked his kidneys, as well.He has no lasting negative effects from this, thankfully:) Of note, this is about the same time as decline of my LKS/PANDAS son with odd behaviors, language and speech issues- makes me think that a big, bad bug entered my home and attacked my children's brains/kidneys at the same time. One was just more involved than the other because he was younger with less mature immune system?? Both my kids get Strep about 2 times per year over the years. Spring and Fall.Although, older one seems to be lessening the older he gets.

 

Often wonder if one bug caused problems in 2 different parts of my younger son's brain. Temporal lobe and and basal ganglia? He definitley went ticcish (motor and vocal)and more OCD after Strep events last Fall and this Spring that resolved on long term antibotics.We have made progress on the LKS...trying to make headway with the OCD with SSRI's, now.

 

Hope this all makes sense...feel like I ran around it circles. Since my son has add'l dx of LKS (extremely rare disorder)- I'm always reluctant to weigh in on too many "pure PANDAS" topics since his situation is a bit unique and different. However, I read forum to pick up useful info on supplements and meds and try to apply it to his situation, presentation and history as best I can. Like with meds...a little has always seemed to go a long way with him. Seems to be more of a PANDAS thing than a LKS thing?? Even from Neuro's perspective. Fleshing out what is possibly related to one condition from the other is difficult. Or, are they all interrelated? That's what my gut tells me although, I can't prove it with reasoning and science because there are still too many unknowns from the medical community. Who knows- trying to figure this all out is like trying to solve Einstein's theory of relativity with "Abby Normal's" brain!!

 

Thanks for all your feedback...going to take a look at some of the Murphy research:)

[kthomas]

Our DS 7 was put on Clonidine in Feb. for tic disorder and ADHD behavior. The rx worked pretty well for him as it lessened his anxiety and made him much less impulsive, but it made him a little too sedated and we only used half of the prescribed amount. So he was getting 1/4 mg in AM and 1/2 mg in PM. So from hands on experience less is better. Maybe it is something to do with the blood brain barrier being breached and medications have a greater effect.

As a side note the neurologist just changed the rx from Clonidine to Intuniv because of the sedative nature of Clonidine. She did caution that the tic might become more pronounced with the change in medication.

[sww817]

I just came across this thread looking for something else and am sitting here with my mouth hanging open! I did not know this about PANDAS children and activation of ssri. I have been told multiple times that my son is on an extremely low dose of Prozac and typically they would not prescribe that low- but if I thought it was helping to continue. He also went bonkers on the full dose of zoloft that we tried first! This article just hit me upside the head. Funny how I find these little tidbits on this board!

 

I was actually wondering if it would be of any benefit to take my son off the ssri before he has any more appointments? I am hoping to get an appt at USF with Dr. M and hopefully eventually Dr. Storch for his program. Anyone have any experience with whether they would need / want to see the child at true baseline? Not that I would want to put him there unnecessarily...