PANDAS Psychiatrists

[Wilma Jenks]

I really like the current psychiatrist we are seeing. She is pretty open minded to things, but I think my child is such a bizarre case, that most people are just very perplexed by it. For some reason, the smallest amount of meds. seem to make her more violent. Sometimes when I give 2mg. of melatonin too close to something else, for example... it's like their is an explosion in her brain and she goes violent. This has consistenly been the case since a very young child. When ever I go up over 12.5mg. of lamictal, the violence starts. I tried going up higher on depakote at one point, and she ripped the furniture apart. Serveral psychiatrist told me that these drugs are not designed to make this happen. I told them, I really don't know exactly what these drugs are designed to do, but I can tell you what they do to my child. I want these drugs to work more than them, but I constantly feel like I am pleading with them to bleive me when I tell them what is happening. I don't want to waste time and evergy on trying to convince anyone anymore. Anyway...I was wondering if there are any psychiatrist that no about PANDAS, and if anyone knows of any in the Northern NJ area? I am still going to try to work things out with current pdoc., because I REALLY don't want to leave her,but I want one lined up, just in case.

[melanie]

Hi wilma

 

I use Dr Novatny at UMDNJ in piscataway. She is familure with PANDAS and we see her actually we see her today.Shes a psychopharmacologist(sp)so shes great with meds.She does work mostly (i think ) with autistic spetrum kids. 732-254-4119.

 

Melanie

[MomWithOCDSon]

Wilma -- Unfortunately, we're in the Midwest, so I don't have any NJ psychiatry options to suggest. I do have another suggestion for you, though.

 

Like your DD, our DS can display some very "atypical" (at least in the standard psych's eyes) responses to various medications, particularly at higher doses. And we DO have a PANDAS-savvy psych now! Still, it can be hard for her to believe that an infinitessimally low dose of one med or another (most recently, Abilify) could so activate our 14yo, 140-pound young man!

 

So, our video camera has become our BEST friend! Tape your DD when you see any particular behavior that would further enlighten your care-givers. Tape her at her best, note the date and the time and the medications she's currently doing well on. Tape her at her worst, and make sure to include the same information. Have the camera handy and ready to roll after you administer something new, or something in a different dosage, and record her response.

 

Even the best psych cannot know your child as well as you do, nor can they be in your shoes 24-7, suffering along with your child as she reacts to all of these attempted interventions. So you have to MAKE them feel as though they were there. Fill out that information void. It has done wonders for our communication with our DS's psych.

 

Good luck!

[Guest pandas16]

Have you ever tried the lamictal without the depakote? Is she on Depakote for tics? That personally made things much worse for me as a child. For tics, tenex was much more effective. The sleepiness eventually wears off. Serotonin and dopamine weren't my main issues, mine were norepinphrine and glutamate. I know that lamictal is good with glutamate but I'm not sure what depakote does.

[trggirl]

I read one source that said that depakote can increase norepinephrine. I didn't look further though.

Edited April 21, 2011 by Trg girl

[Wilma Jenks]

She does not have tics. She is only on lamictal right now.

[smartyjones]

Anyway...I was wondering if there are any psychiatrist that no about PANDAS, and if anyone knows of any in the Northern NJ area? I am still going to try to work things out with current pdoc., because I REALLY don't want to leave her,but I want one lined up, just in case.

 

 

i'd think it would be worth a try to see if you could get a referral from Dr. Leckman at Yale. you can google James Leckman and Yale and then e-mail and ask if he could help with a referral to someone in your area.

[Wilma Jenks]

Is he known to be up on PANDAS? Sorry, not sure who he is.

[mommakath]

I really like the current psychiatrist we are seeing. She is pretty open minded to things, but I think my child is such a bizarre case, that most people are just very perplexed by it. For some reason, the smallest amount of meds. seem to make her more violent. Sometimes when I give 2mg. of melatonin too close to something else, for example... it's like their is an explosion in her brain and she goes violent. This has consistenly been the case since a very young child. When ever I go up over 12.5mg. of lamictal, the violence starts. I tried going up higher on depakote at one point, and she ripped the furniture apart. Serveral psychiatrist told me that these drugs are not designed to make this happen. I told them, I really don't know exactly what these drugs are designed to do, but I can tell you what they do to my child. I want these drugs to work more than them, but I constantly feel like I am pleading with them to bleive me when I tell them what is happening. I don't want to waste time and evergy on trying to convince anyone anymore. Anyway...I was wondering if there are any psychiatrist that no about PANDAS, and if anyone knows of any in the Northern NJ area? I am still going to try to work things out with current pdoc., because I REALLY don't want to leave her,but I want one lined up, just in case.

Tried to PM you but you can;t receive messages. Got a great name for you.....Katherine

[mommakath]

Dr. Robert Bransfield in Red Bank, NJ. Was given his name by Dr. J. He is VERY well published (can send you some links) and I was told he can tweak meds like noone else. He is Lyme and Pandas.

[Wilma Jenks]

Thank You Thank YOu