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Anafranil is also helpful to my daughter and another daughter (also PANDAS) used it during her illness. I think the chance of a psychiatrist wanting to change medication when your son is doing well is very small. If they want to tinker, move on. We pay our insurance co-payment for medication check-ups- so I cannot answer the payment question. Does he have health insurance? Also, though a psychiatrist who understands the illness causing the OCD would be awesome, you really need a doctor to keep prescribing his medication, that is all. Momwith OCDson is right on that (her last paragraph, previous post)--- she is right about most things, I have noticed over the years I would find one, recommended by a friend or simply one that takes your insurance & make an appointment . We found the current psychiatrist (hopefully the last one!) by just picking one based on insurance and distance. She has been a gem. Best wishes and so glad to read the positive post!

why do you think ivig is so necessary, if nothing but bart and lyme are the issue. try not to focus on that, esp with the ins issue. it might be like banging your head into a wall. what else are you trying now? how is she?

I think that is a good idea. does her immunologist ignore your reports, has he not ordered a lab test? that is awfully dismissive! I hope he is otherwise providing good care. hope she is ok !

mayzoo, does not any MD question these lab and.urine tests in your child?

my daughter's luvox experience was disastrous. however, it was not the"go slow and start low" dosing recommended by Dr Murphy. we have found some help from OCD using clomipramine. my daughter has been on it for a few years. clomipramine can also have a slight anxiolytic effect, so that may help her too.

100%agree with buster. without pandasnetwork.org, my children would never have had a chance at recovery!

appeal? dcmom, are you looking at pex again?

do you mind sharing what kit you purchased, either on forum or privately?

what kind of symptoms is she slightly less symptomatic with, if I may ask?

my daughters both had it. one had it twice. I will be happy to share more privately If you or your parents would like to hear about it. it was generally very helpful, but did not "last" , both have needed additional tx after it. it didbring much help Iin two very severe cases and offered some relief.

We saw Dr L in MD for the pex. I am so sorry you are having so much trouble getting her well. my daughters' responded very well to high dose oral steroids ( like 60 mg) - but they did not respond for about 10 days , so had we done only a week or a lower dose, I am not sure we would have seen responsiveness. They were also neuro-typical before their onsets, both around 10 & 1/2. I would think that it might be a bit early to be sure the IVIG did not help. What other meds is your daughter on?

waiting for that post- use post!!

is he proposing any treatment? GAD 67 or 65? was this from a spinal tap at NYU? Did someone from NYU just call and give you results and then offer no explanation? I made acquaintance with a woman whose teen son has GAD antibodies and had purely psych symptoms- rage, psychosis, etc. He is being treated at a pediatric center for it. So, it is not solely SPS. & I sent you a PM

you deserve answers. I am so glad you did not give up.

Ophelia!!!!!!! how did you finally get these results? When w ere they run? I am so sincerely happy that you may finally get some answers, and some treatment. can you go back to the AE alliance. Org website and do some searching there? thank you for posting here to share with us.

sunlight: yes. one daughter got pretty severe burns to her cheek not longer after starting it and sittinf at a baseball game. she is quite fair, though. the burns were more than an average sunburn and required prescription cream to heal. we were much more careful after that. stick with 25 mg for a while, at least! (like 6 weeks maybe?)

also I would give it longer than a week before your give up on it! risperdal helped moderately in rages for my oldest daughter.

my daughters found great relief from anafranil for ocd and anxiety, even at the 25 mg dose. they are both now off it. good luck to you tj21. I think it is a good med for pandas and probably very under-prescribed. my children had many interventions simultaneously with the clomipramine, so I ccannot attribute everything to itt they both felt it was very helpful at even that low dose. they are now 17& 15. the older one was on it in some dose or another from 2009 until last week - @ doses from 25 mg, all the way up to 150mg back to 25mg, finally. the younger one was on it from 2010 until 2013, never increasing past 25 mg. best wishes!

ditto the erp, trintiybella. and please consider some low dose psych meds, maybe a tricyclic antidepressant. maybe those abx are not doing anything... if I recall she is on a ridiculous amount of meds, right? do you have some kind of anti-inflammatory in the mix? she seems to be suffering so much with so many varied ssymptoms. have you considered starting from scratch with a new professional opinion (s) & a clear slate, med-wise?

my daughter had her second rituximab in dec/jan. no noticeable change in symptoms. she is really doing well now, 3-4 months in. I hope he stabilizes soon.

pm'd you the name of a Fairfax llmd (she is rheumatologist)

I would suggest the opposite. I would definitely ask for an eeg. a seizure might change the way pans symptoms are treated or even help uncover a different diagnosis. just my $.02

1. it is kinda pretty-- did you notice the other views, where they show it on the wall with furniture around. It is alot prettier than the marijuana one, for example 2. HOW ON EARTH DID YOU FIND THAT???

yes some have tracked their own children and seen a correlation based on flares. I think buster may have done that. steroids do affect it. I think they need to be off for a two months. I asked that question specifically of dr Cunningham a few years ago. I think that was her answer!

trggirl--i pm'd you!