Has Anyone Successfuly worked with a Psychiatrist

[momaine]

I am so frustrated. Here is our situation. Dd diagnosed with OCD 4.5 years ago. Did ERP and eventually added Zoloft through family doctor, later switched to Celexa during exacerbation.

 

 

Dd diagnosed with PANDAS a year and a half ago. Antibiotics (which helped at first then not as much) then eventually hdIVIG. Great improvement (70-80%)in first two ivig's. Successfully reduced Celexa from 40mg to 20mg 7 months ago.

 

Next few IVIG's not so obvious benefits. (throw in a couple sinus infections for good measure)

 

Lyme/Bartonllla diagnosis end of January. First month, much better, next two months worsening of symptoms due to toxicity from die off. (still fluctuates with Tindamax)

 

Not doing so well with the OCD. Lyme Dr. wants a psychiatrist on board for psych meds and suggested we look into plasmapherisis to clean her blood of all the toxins. I have a newish friend who is a psychiatrist and I asked her opinion. (ask and you shall recieve) I have explained that she has lab evidence of anti-neuronal antibodies as well as other labs that show an autoimmune process going on, etc. I asked if she would take her on as a patient, thinking it would be easier than re-explaining the whole situation again to another psychiatrist. I told her of the suggestion to pursue Plasmapherisis and she wrote back telling me I should contact the NIMH to get there opinion if I were considering yet another invasive medical proceedure. Clearly, she agrees with the NIMH, which says that it has not been shown that antibiotics or IVIG or Plasmapherisis help PANDAS. (which didn't exist to them till a few months ago)

 

So, long story short, my question is this, Has anyone worked successfully with a psychiatrist who believes in the medical aspects of PANDAS/LYME initiated OCD? Is this a hopeless task? We see our family physician on Tuesday who prescribed the Celexa and I want to talk to her about it first and see if she can't help us. I'm a little worried about that apt. because when I was looking into a lyme diagnosis for myself, I called the office and left multiple messages asking if she would order Igenex testing on me (after dd's lyme diagnosis) and she never returned my calls so I don't know what she is thinking wrt Lyme.

 

What is your experience?

 

BTW, I know ssri's sometimes are activating in PANDAS/Lyme kids but in the past they have helped my dd. The psychiatyrist friend mentioned adding in something to boost the ssri if it didn't work on its own.

[LNN]

There's a therapist (not a psychiatrist) in southwestern CT who has lyme/specializing in treating the psychological aspects of lyme. I can PM her info if you want it. But it would be quite a haul for you, unless you tied it in with your other CT visits. And she wouldn't be able to prescribe anything.

 

As for pheresis, I get the thinking about cleansing the toxins, but it's not full blood dialysis. Pheresis is a dialysis of immunoglobulin - the antibodies in the blood. The red blood gets put right back into the body. So you'd be clearing out the antibodies that know how to fight lyme, plus some auto-antibodies that might be attacking the basal ganglia. But I'm not sure how much of the toxins are in the blood plasma vs. what's in the red stuff. In our experience, it was a nice vacation from he**, but it didn't last and it wasn't cheap.

 

I think you might be better working on detox and maybe pulsing abx to give the body a chance to flush stuff out. But I'm no expert.

 

I have nothing to offer re: the SSRIs. If you feel they help but are having trouble getting a script, you can look into SAMe or inositol for the time being. I can PM you articles on them if you're interested.

[kimballot]

I am in a similar situation. No local docs for me, but I do know of a doctor in Mass. at Harvard, a couple at Yale (Dr. Leckman's clinic) and Dr. M in Florida. I will PM you -

[smartyjones]

So, long story short, my question is this, Has anyone worked successfully with a psychiatrist who believes in the medical aspects of PANDAS/LYME initiated OCD? Is this a hopeless task?

 

What is your experience?

 

BTW, I know ssri's sometimes are activating in PANDAS/Lyme kids but in the past they have helped my dd.

 

 

momaine -- so sorry to hear your frustration that actually, we all share! unfortunately, no, we did not find help in the psychiatric/psychological realm. we knew we were dealing with pandas quite soon due to a savvy behavioral therapist who diagnosed, but couldn't really provide strategies. our 'behavioral specialty' pediatrician was a complete joke. our next highly referred OCD psychologist was disastrous -- how he had a degree working with children is beyond me. he was part of a practice that i really wanted to see 'the OCD star' there but she wasn't accepting new patients -- and a year later, i met her in person at the OCD conference as she attended a pandas lecture that was just then educating her. our next step was a psychiatrist who seemed to get it at first but i reallly don't think did.

 

at the OCD conference, a psych who i have huge respect for stated he didn't 'really get it' until just a few years ago. so, unfortunately, i terribly jaded and found no help from the field.

 

however, i do believe momwithocdson on the pandas board has found help there. her son is not in the lyme realm but she will probably be able to help guide you. you're working on different pathogens but i believe what you're seeking would be similar. i'd suggest PMing her. she's so wise and (unfortunately) experienced in what it seems you are seeking.

 

i haven't seen meg's mom on the forum lately, but she is also very well versed with OCD techniques and could probably provide some referrals and suggestions.

 

i'm not currently looking for help from that field (ds is doing quite well -- checking into listening programs from OT for remaining help) but, if i were, i'd try to e-mail dr leckman at yale for a referral.

 

good luck.

[Bill]

Dr. Susan Perlmutter, a psychiatrist in Northern VA 'gets' PANDAS as she was on Swedo's research team at NIH. The last I checked though, she is not taking new patients. My son - also PANDAS and Lyme (plus) suffers from OCD. SSRIs keep him and us partially sane from a rage/anger perspective. Otherwise, nothing including the SSRIs, ERP therapies, seeing psychologist and Dr. Perlmutter has made a dent in the OCD. My son - 13 - has zero will power against it. He will argue with us till the end of days but I don't see him pushing back on the OCD one bit. We are coming up on the 2 year mark middle of this month.

 

The doctor we see for lyme associates raging/OCD with bartonella. Throw in the fact that it can apparently take months to take care of the bartonella and looks like more of a waiting game. We started lyme treatment last October; still waiting. We are scheduled for IVIG at the end of June and are holding on to that in case we do not see improvement by then.

 

My son had plasmapheresis prior to the lyme diagnosis. Nada. Now, that was before we started all of this lyme treatment. But I agree with other posts, I don't see how PEX would really help with detox.

 

Bill

[MomWithOCDSon]

Hi Everyone --

 

Not ususally chiming in here, but a little bird dropped me a note, and this is a topic we've (for good or bad) had a lot of experience with.

 

We initially had a non-PANDAS psych from DS's age of 7 until literally just a couple of months ago. He poo-poohed PANDAS/PITANDS from my first inquiry when DS (diagnosed with OCD at 6)started with him at age 7 following his first major exacerbation. At the time, we couldn't make the strep connection directly because DS was asymptomatic, and we didn't know about ASO, AntiDnase-B, CamK or any of the other diagnostic tools that have come along since then.

 

But when DS's GIANORMOUS exacerbation at age 12 threw all of us, including that psych, into No Man's Land and I discovered PANDAS, had a hugely positive set of strep titer results, etc., the psych started to come around. I almost literally buried him in research and paperwork, and I stopped "rubber-stamping" his treatment responses. I pushed back on anti-psychotics and increasing doses of SSRIs, and I think he got frustrated with me at times, but he eventually came around. Finally, though, he admitted that we'd "outgrown" him, and he didn't feel he had anything else to offer; he wasn't invested enough in our DS to do the full body of research to consider all the "less standard" psych treatment options. So we moved on. I must've called 2 dozen psychs, and phone interviewed at least 15, before we chose our current one.

 

Now we've found a psych who "gets" PANDAS/PITANDS, but even with her, her understanding has some limits. She, at least, understands the limitations in terms of SSRI dosages and their potentially "activating" impact on PANDAS kids, but it took a lot of discussion and push-back to get her to listen to us about some of DS's other PANDAS-born behaviors; initially, she kept going down the path of an additional diagnosis (pervasive developmental disorder - PDD) for DS because he seemed so "out of it" at times and was having trouble expressing himself, connecting thoughts and feelings, etc. And she thought that my pushing back at her on it, telling her that when he's not in exacerbation, those PDD traits are basically non-existent, was just me being resistent to being told that there was something else wrong with my kid. One session, I was actually pretty close to punching something!

 

But THEN DS began to heal a bit and we were able to show her . . . both in person and via some home video . . . what we meant about the difference between a kid who's struggling with PANDAS and a kid who's truly got PDD. And she promptly did a 180 and started backing my position. Now she listens to me about meds and their impact on DS (a home video helps, too), and we're finally starting to regain some ground after another hefty exacerbation (DS's school was rife with strep) in mid-February.

 

Finally, Bill, I want to say that our DS also responds reasonably well to low-dose SSRIs, but at his age (14), he too tends to want to cling to what he knows in terms of some of the OCD behaviors. I think it's his adolescence kicking in, and the OCD exploits it. A 14-year-old boy is SUPPOSED to dislike and distrust authority figures, no? But the OCD makes his obstinance that much worse, and sometimes he can't see the difference between an OCD thought and a rational one. Well, he's been in CBT/ERP off and on since he was 6, so it's not like he hasn't been taught the tools of the trade, but, like your DS, he initially couldn't see the point of working on giving up anything . . . not a thought, not a ritual, nada.

 

Well, the new psych came to the rescue again. Despite having been to a series of therapists and another psych before her, she was the first to see the forest for the trees. Though I don't know if this is the case in your household or not, I thought I'd mention it. Our DS wasn't feeling sufficiently compelled to part with his OCD behaviors because 1) he was too sick initially, and he needed some more time to heal, but arguably even more importantly, 2) we had become too accommodating for him, and he wasn't feeling the full "pinch" of everything he was giving up in his own accommodation of the OCD. We'd been taught, of course, to "push back" and "shrink" and "not accommodate" the OCD, and for the most part, we stood by that. But in the interest of lessening domestic stress and arguments, we were still making things a little too easy on DS, especially when it came to the time his rituals were consuming. He was having trouble getting to bed, getting to school on time, etc., so we started "accommodating" that behavior by getting him up even earlier, letting him knock off his homework earlier so he could get to bed, coaching him through the multitude of tasks he would take 5 times as long as a normal kid to complete because he was ritualizing his way through it, etc. The new psych called us out on it.

 

So, we stopped, more or less. And DS was healing from his fresh strep exposure, too. And the two trajectories appear to have finally met one another, and we're getting back to a good place again (knock on wood). Now we let DS "suffer the consequences" of some of his OCD choices, like running late to school, having insufficient time to watch a TV program or play a video game on a weekend, etc. He's learned it's a waste, and he's slowly dropping some of the rituals on his own again.

 

Sorry for rambling, but I guess where I'm going with it all is . . . you CAN find a PANDAS-knowledgable (or at least accepting) psych, but even then, you can't count on them knowing or understanding all the subtleties involved. So we have to be willing and ready to advocate, to stick our necks out, to push back but still make it clear that we respect their professionalism and clinical experience. They're professional doctors, but we're professional PANDAS/PITANDS Parents. We've got our diplomas from the School of Misunderstood Maladies.

 

Hang in there!

[philamom]

Thank you Nancy for sharing. I too have become more accomodating...something I need to work on.

[Suzan]

Our one experience with a psychologist/psychiatrist was not helpful at all but he admitted to not knowing a thing about pandas. Our lyme doc did prescribe lexapro for dd9 for her anxiety. We give a very small dose and only when she is out of control. It seems to help us a lot in the few times we've had to use it. I don't use it on a regular basis out of fear and it's nice to have something to use in emergencies.

 

Finding a good fit I think is the only way to go and not the easiest thing to find.

 

HUGS!

 

Susan

[momaine]

Hi Everyone --

 

Not ususally chiming in here, but a little bird dropped me a note, and this is a topic we've (for good or bad) had a lot of experience with.

 

We initially had a non-PANDAS psych from DS's age of 7 until literally just a couple of months ago. He poo-poohed PANDAS/PITANDS from my first inquiry when DS (diagnosed with OCD at 6)started with him at age 7 following his first major exacerbation. At the time, we couldn't make the strep connection directly because DS was asymptomatic, and we didn't know about ASO, AntiDnase-B, CamK or any of the other diagnostic tools that have come along since then.

 

But when DS's GIANORMOUS exacerbation at age 12 threw all of us, including that psych, into No Man's Land and I discovered PANDAS, had a hugely positive set of strep titer results, etc., the psych started to come around. I almost literally buried him in research and paperwork, and I stopped "rubber-stamping" his treatment responses. I pushed back on anti-psychotics and increasing doses of SSRIs, and I think he got frustrated with me at times, but he eventually came around. Finally, though, he admitted that we'd "outgrown" him, and he didn't feel he had anything else to offer; he wasn't invested enough in our DS to do the full body of research to consider all the "less standard" psych treatment options. So we moved on. I must've called 2 dozen psychs, and phone interviewed at least 15, before we chose our current one.

 

Now we've found a psych who "gets" PANDAS/PITANDS, but even with her, her understanding has some limits. She, at least, understands the limitations in terms of SSRI dosages and their potentially "activating" impact on PANDAS kids, but it took a lot of discussion and push-back to get her to listen to us about some of DS's other PANDAS-born behaviors; initially, she kept going down the path of an additional diagnosis (pervasive developmental disorder - PDD) for DS because he seemed so "out of it" at times and was having trouble expressing himself, connecting thoughts and feelings, etc. And she thought that my pushing back at her on it, telling her that when he's not in exacerbation, those PDD traits are basically non-existent, was just me being resistent to being told that there was something else wrong with my kid. One session, I was actually pretty close to punching something!

 

But THEN DS began to heal a bit and we were able to show her . . . both in person and via some home video . . . what we meant about the difference between a kid who's struggling with PANDAS and a kid who's truly got PDD. And she promptly did a 180 and started backing my position. Now she listens to me about meds and their impact on DS (a home video helps, too), and we're finally starting to regain some ground after another hefty exacerbation (DS's school was rife with strep) in mid-February.

 

Finally, Bill, I want to say that our DS also responds reasonably well to low-dose SSRIs, but at his age (14), he too tends to want to cling to what he knows in terms of some of the OCD behaviors. I think it's his adolescence kicking in, and the OCD exploits it. A 14-year-old boy is SUPPOSED to dislike and distrust authority figures, no? But the OCD makes his obstinance that much worse, and sometimes he can't see the difference between an OCD thought and a rational one. Well, he's been in CBT/ERP off and on since he was 6, so it's not like he hasn't been taught the tools of the trade, but, like your DS, he initially couldn't see the point of working on giving up anything . . . not a thought, not a ritual, nada.

 

Well, the new psych came to the rescue again. Despite having been to a series of therapists and another psych before her, she was the first to see the forest for the trees. Though I don't know if this is the case in your household or not, I thought I'd mention it. Our DS wasn't feeling sufficiently compelled to part with his OCD behaviors because 1) he was too sick initially, and he needed some more time to heal, but arguably even more importantly, 2) we had become too accommodating for him, and he wasn't feeling the full "pinch" of everything he was giving up in his own accommodation of the OCD. We'd been taught, of course, to "push back" and "shrink" and "not accommodate" the OCD, and for the most part, we stood by that. But in the interest of lessening domestic stress and arguments, we were still making things a little too easy on DS, especially when it came to the time his rituals were consuming. He was having trouble getting to bed, getting to school on time, etc., so we started "accommodating" that behavior by getting him up even earlier, letting him knock off his homework earlier so he could get to bed, coaching him through the multitude of tasks he would take 5 times as long as a normal kid to complete because he was ritualizing his way through it, etc. The new psych called us out on it.

 

So, we stopped, more or less. And DS was healing from his fresh strep exposure, too. And the two trajectories appear to have finally met one another, and we're getting back to a good place again (knock on wood). Now we let DS "suffer the consequences" of some of his OCD choices, like running late to school, having insufficient time to watch a TV program or play a video game on a weekend, etc. He's learned it's a waste, and he's slowly dropping some of the rituals on his own again.

 

Sorry for rambling, but I guess where I'm going with it all is . . . you CAN find a PANDAS-knowledgable (or at least accepting) psych, but even then, you can't count on them knowing or understanding all the subtleties involved. So we have to be willing and ready to advocate, to stick our necks out, to push back but still make it clear that we respect their professionalism and clinical experience. They're professional doctors, but we're professional PANDAS/PITANDS Parents. We've got our diplomas from the School of Misunderstood Maladies.

 

Hang in there!

Thanks for your well thought out and lengthy response. I'm exhausted for you just reading it. I'm also a little overwhelmed at the idea of coming up against such brick wall. (even though it turned out ok in the end)

 

I did talk to Dr. B about Plasmapherisis and he really didn't think we were at a time and place where we need to consider it yet. He said it's more invasive than IVIG and it cannot be done as a stand alone, but needs to be followed up with IVIG to replace the good antibodies.

 

Not sure what the heck we are going to now. Have an apt. with our family physician on Tuesday. She's been helpful in the past. I'll see what she can offer.

[momaine]

Thank you Nancy for sharing. I too have become more accomodating...something I need to work on.

I have such an issue with this. I am accomodating because my child is suffering due to inflammation of the brain. When she is better (inflammation is lowered) she doesn't have these OCD issues. They just go away.

 

I don't feel like people with a pandas child should be expected to just stand back and watch their children suffer. (my dd cannot do erp when she is in an exacerbation and she's better when she's not) We went to a well known psychologist who specializes in erp with children with ocd and she is the one who pointed us toward pandas because of her innabilitiy to help her. She said to me, as long as she still has an active infection, I cannot help her.

 

When her ocd begins to ask too much of me (I do refuse to switch lights on and off for her, etc.) I do take a stand in what I am willing to do or not do. But I do things like bring her food when she can't get off the couch seems like a no-brainer if I want her to stay healthy.

 

what do you think?

[dcmom]

Momaine-

 

Just to play devil's advocate

 

I am a MAJOR fan of pex. Both of my kids had it.

 

IF you are dealing with pandas- I say why not. I don't think it would be helpful if lyme is the whole problem. So- I am not sure where you feel you are with both illnesses.

 

I will say PEX is not a cure. BUT- it will clear out the anti neurals (maybe a new cunningham test would be a help with deciding this)- so if they are causing a problem you may get some relief.

 

If lyme (or some other current infection) is causing autoimmunity- then unless you get that stopped- your relief will be very short lived. But- I will tell you- both of my girls needed the pex to stop the antineurals- they were not getting better without it.

 

I don't see how IVIG is SO much less invasive than pex. Both have their pros/cons. I think lots of docs are intimidated by pex- but it is a clean, straightforward procedure, with the only risk lying with the central line (which is in only three days- prior to real risk there). There are no side effects like IVIG- and you are not adding anything- you will not make anything worse. True- Dr B cannot do it in his office- he may not even be able to get it for you (getting it - is the biggest issue with pex).

 

Also- according to our hem/onc docs who do pex everyday (and usually on VERY sick kids)- it will not render the child immuno compromised. Your antibodies are created by Bcells- which REMEMBER. For our kids this is unfortunate- this is why pex is not a cure- but your immune system will call up the antibodies immediately if needed.

 

Most docs are not that familiar with pex, and picture it the way swedo did it ten years ago- it is NOT really a risky procedure.

 

Our insurance ended up covering it- and their "negotiated rate" with the hospital was $5k total- not bad. It gave my kids their lives back immediately (took away ALL ocd). We have had problems since- but I do not regret doing it- and wish we could get it every few months.

 

I know most on the lyme forum will disagree with my opinion- but just wanted to offer another side. It depends on what is causing the ocd.

[momaine]

There's a therapist (not a psychiatrist) in southwestern CT who has lyme/specializing in treating the psychological aspects of lyme. I can PM her info if you want it. But it would be quite a haul for you, unless you tied it in with your other CT visits. And she wouldn't be able to prescribe anything.

 

As for pheresis, I get the thinking about cleansing the toxins, but it's not full blood dialysis. Pheresis is a dialysis of immunoglobulin - the antibodies in the blood. The red blood gets put right back into the body. So you'd be clearing out the antibodies that know how to fight lyme, plus some auto-antibodies that might be attacking the basal ganglia. But I'm not sure how much of the toxins are in the blood plasma vs. what's in the red stuff. In our experience, it was a nice vacation from he**, but it didn't last and it wasn't cheap.

 

I think you might be better working on detox and maybe pulsing abx to give the body a chance to flush stuff out. But I'm no expert.

 

I have nothing to offer re: the SSRIs. If you feel they help but are having trouble getting a script, you can look into SAMe or inositol for the time being. I can PM you articles on them if you're interested.

I really don't want to see another out of state doctor. I'm willing to go to a private practice if I have to and pay cash as long as they don't need to see us too often. (kaching) And we are doing lots of varied things for detox, which I think help, since she gets a die off rash much more often now. But she still has severe OCD and I just feel like she needs some quality of life while she is getting better. So frustrating....wish I could fast forward in time to when she is already better.

[momaine]

Dr. Susan Perlmutter, a psychiatrist in Northern VA 'gets' PANDAS as she was on Swedo's research team at NIH. The last I checked though, she is not taking new patients. My son - also PANDAS and Lyme (plus) suffers from OCD. SSRIs keep him and us partially sane from a rage/anger perspective. Otherwise, nothing including the SSRIs, ERP therapies, seeing psychologist and Dr. Perlmutter has made a dent in the OCD. My son - 13 - has zero will power against it. He will argue with us till the end of days but I don't see him pushing back on the OCD one bit. We are coming up on the 2 year mark middle of this month.

 

The doctor we see for lyme associates raging/OCD with bartonella. Throw in the fact that it can apparently take months to take care of the bartonella and looks like more of a waiting game. We started lyme treatment last October; still waiting. We are scheduled for IVIG at the end of June and are holding on to that in case we do not see improvement by then.

 

My son had plasmapheresis prior to the lyme diagnosis. Nada. Now, that was before we started all of this lyme treatment. But I agree with other posts, I don't see how PEX would really help with detox.

 

Bill

 

I talked to Dr. B afterwards and although he said he could find us a doctor who could do it, he didn't feel we were in such dire straights as to do something so invasive. He also said it can't be done as a stand alone and needs to be followed with IVIG. We're hanging in there, for now. We will try a sleeping aid and see if that helps the nights of insomnia. And it seems like (not to jink myself) that the increase in Celexa from 20 to 40mg is helping a little.

[momaine]

Momaine-

 

Just to play devil's advocate

 

I am a MAJOR fan of pex. Both of my kids had it.

 

IF you are dealing with pandas- I say why not. I don't think it would be helpful if lyme is the whole problem. So- I am not sure where you feel you are with both illnesses.

 

I will say PEX is not a cure. BUT- it will clear out the anti neurals (maybe a new cunningham test would be a help with deciding this)- so if they are causing a problem you may get some relief.

 

If lyme (or some other current infection) is causing autoimmunity- then unless you get that stopped- your relief will be very short lived. But- I will tell you- both of my girls needed the pex to stop the antineurals- they were not getting better without it.

 

I don't see how IVIG is SO much less invasive than pex. Both have their pros/cons. I think lots of docs are intimidated by pex- but it is a clean, straightforward procedure, with the only risk lying with the central line (which is in only three days- prior to real risk there). There are no side effects like IVIG- and you are not adding anything- you will not make anything worse. True- Dr B cannot do it in his office- he may not even be able to get it for you (getting it - is the biggest issue with pex).

 

Also- according to our hem/onc docs who do pex everyday (and usually on VERY sick kids)- it will not render the child immuno compromised. Your antibodies are created by Bcells- which REMEMBER. For our kids this is unfortunate- this is why pex is not a cure- but your immune system will call up the antibodies immediately if needed.

 

Most docs are not that familiar with pex, and picture it the way swedo did it ten years ago- it is NOT really a risky procedure.

 

Our insurance ended up covering it- and their "negotiated rate" with the hospital was $5k total- not bad. It gave my kids their lives back immediately (took away ALL ocd). We have had problems since- but I do not regret doing it- and wish we could get it every few months.

 

I know most on the lyme forum will disagree with my opinion- but just wanted to offer another side. It depends on what is causing the ocd.

Thanks for sharing your perspective. I'm glad to hear both sides. I guess for now, we'll hang in there and see how things go in the next few weeks. Dd's Igg wasn't where Dr. B wanted to see it so he gave her 1.7g/kg this round of IVIG. Maybe that will help with the OCD. That was his hope too.

[sf_mom]

As you know, there are several that have found that the repeat hdIVIG were not helpful. These parents were forced to stop treatments because the child was doing so 'horribly' (they also had Lyme/Pandas)..... The good news is these children did trend better and better the further they got out from prior treatments. Rather than more... perhaps waiting it out, truly waiting it out a good six months. Again, it is important to understand when something isn't working for your child and be flexible enough to change course. I am sure anyone of these parents would be happy to speak with you privately to give you confidence in a new path if needed.

 

I would work on heavy, heavy detox with her over the next two weeks to see if it helps at all. Is it possible you could get her to drink a cup of bentonite clay throughout the day? Or, load her up on bentonite pills? I would also recommend Calm Forte prior to bed, 500 m.g. of Tryptophan, Kids Calm next to bed warm to drink throughout night or give when she wakes and nightly benadryl 'need to get histamine levels lowered'. I suspect she'll sleep better but might take up to two weeks for everything start helping.

 

I am sorry I don't have any good suggestions for a Psychiatrist. We have a wonderful one in our area that totally understands PANDAS but is not local to you.

Edited May 6, 2011 by SF Mom