Wilma Jenks Posted May 19, 2011 Report Share Posted May 19, 2011 If my girl keeps looking good on the steroids, I was wondering if I should be looking 4 a psychologist instead of a psychiatrist, since Dr. T. said she doesn't really need psych. drugs with PANDAS. It appears he is right, since we are finally starting 2 c improvement 4 the first time on these steroids. Are there many psychologists in NJ that "get" PANDAS, or are they hard to find too? My girl IS on lamictal too for the abnomrmal EEG. Just 12mg. The psych. doctor was prescribing them. Nuerologist didn't think any of her sypmtpoms were related 2 the EEG. I see they were right. It is PANDAS. Ugh. I just have 2 figure out what doctors I need to prescribe what. Dr. B. does not prescribe lamictal. I was thinking I need: Psycologist that understands PANDAS and to help with the school piece. Nuerologist that can prescribe the lamictal Immunoligist for the PANDAS part. Is it worth staying with our psychiatrist in hopes that she finally believes what I am telling her, or should I move on? It has been a year? I think I know the answer, but I am so tired to start over.... Link to comment Share on other sites More sharing options...
rockytop Posted May 19, 2011 Report Share Posted May 19, 2011 if you can drive to Bethesda, Dr L is a great neurologist! and pandas, too! Link to comment Share on other sites More sharing options...
peglem Posted May 19, 2011 Report Share Posted May 19, 2011 Is the pdoc the one who prescribed the lamictal? If you just want med management for the lamictal, keep the prescribing doctor for that- but do not expect a psychiatrist to offer more than psych management, unless they are special like dr. Murphy- that is what they do. A psychologist could be able to help with strategies and techniques for dealing with the OCD. I find that it is often not necessary for all doctors to believe and treat PANDAS. Sometimes you can just use them to help with whatever symptoms you want them to treat. I have a pediatrician who is a great advocate for us(and that has caused some problems for him, professionally), but we just use specialists to deal with specific issues. Link to comment Share on other sites More sharing options...
kimballot Posted May 19, 2011 Report Share Posted May 19, 2011 (edited) If my girl keeps looking good on the steroids, I was wondering if I should be looking 4 a psychologist instead of a psychiatrist, since Dr. T. said she doesn't really need psych. drugs with PANDAS. It appears he is right, since we are finally starting 2 c improvement 4 the first time on these steroids. Are there many psychologists in NJ that "get" PANDAS, or are they hard to find too? My girl IS on lamictal too for the abnomrmal EEG. Just 12mg. The psych. doctor was prescribing them. Nuerologist didn't think any of her sypmtpoms were related 2 the EEG. I see they were right. It is PANDAS. Ugh. I just have 2 figure out what doctors I need to prescribe what. Dr. B. does not prescribe lamictal. I was thinking I need: Psycologist that understands PANDAS and to help with the school piece. Nuerologist that can prescribe the lamictal Immunoligist for the PANDAS part. Is it worth staying with our psychiatrist in hopes that she finally believes what I am telling her, or should I move on? It has been a year? I think I know the answer, but I am so tired to start over.... Wilma - you seem to be on the right path!! I would make an appointment with a psychiatrist who specializes in PANDAS. It will probably take a month or more to get the appointment, and the PANDAS psychiatrist will speak the same language as you local psychiatrist, so the PANDAS psychiatrist would be a good person to consult with. You also need a local psychiatrist - so keep the one you have IF he/she is willing to work with a PANDAS expert. If he/she is NOT willing to work with the expert then I would look for another doc. I was thinking about the team analogy I made in anther post of yours - Yes, we have to draft the best members of our team from around the country, and we have to act as coach to make sure they all communicate and are heading toward the same plays - but we also have to use these all stars to help train the farm team (our local docs and therapists) so they can be strong members of the team too! Edited May 19, 2011 by kimballot Link to comment Share on other sites More sharing options...
Wilma Jenks Posted May 19, 2011 Author Report Share Posted May 19, 2011 Do you think I should look 4 a Psychologist that knows about PANDAS, that will work with my pscychiatrist (that's knows little about pandas).... or should it be a psychiatrist that that I should get??? i thought if it were a psychologist, she could try ERP with my girl. I pay out of pocket, which I will do no matter what, but is sure would be nice 2 not go into further debt. Link to comment Share on other sites More sharing options...
kimballot Posted May 19, 2011 Report Share Posted May 19, 2011 Do you think I should look 4 a Psychologist that knows about PANDAS, that will work with my pscychiatrist (that's knows little about pandas).... or should it be a psychiatrist that that I should get??? i thought if it were a psychologist, she could try ERP with my girl. I pay out of pocket, which I will do no matter what, but is sure would be nice 2 not go into further debt. I did not know you were paying for everything out of pocket. I think you daughter has a ways to go before she will be ready for ERP (from what you describe), but it sounds like she is moving in that direction and a psychologist can help you to do things at home in the meantime. Yes - get with a PANDAS psychologist who can do ERP if you can. Try to get an appointment now as it may take a while to get one. You can also make an appointment with a PANDAS psychiatrist (as that may also take a few months to get) and then cancel if you need to. Is your daughter receiving any services through your local mental health agency (county or state agency). She may be able to qualify for a medicaid waiver depending on the state you live in - and that could help pay for some of the local professionals at least. Link to comment Share on other sites More sharing options...
airial95 Posted May 19, 2011 Report Share Posted May 19, 2011 CBT/ERP has helped us tremendously. One of the unintended benefits is that it has helped us notice when we might be actually dealing with anew strep infection. Our son responds exceptionally well when he's well, or on the back side of an infection (getting abx, etc...). However, when he's exposed to strep or has a new infection, the effectiveness of the CBT/ERP is limited. Our therapist is from Dr. Muphy's office, so she understands PANDAS and said this is to be expected. When their brain is under attack, those techniques might not be as effective. It was helpful this week when none of our dinner techniques were working for his OCD - and bam - found out this morning he has strep. We have continued therapy even during exacerbations -just for consistency and becasue it does help a bit. As for costs - you might be able to find a therapist through the local university. Our "Miss Jessie" is still working on her PhD, but she works under the direction of one of the docs at Rothman, and we do see him all the time, almost every appointment. She is WONDERFUL, open minded since she's still a student, and the difference in cous tof us is $150 per session vs. $35 per session (it's out of pocket for us too.) Just a suggestion. Link to comment Share on other sites More sharing options...
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