LaurenK

Ophelia, my overall suggestion when you meet him would be to look 100% incapacitated. That's what I looked like when I met him and that's what got his attention. Also, dress right, it's a nice office, try and make a good first impression. Originally, T. Anna made a comment about the nurses and socks, but my personal opinion is dress your kid right if they can't dress themselves. I'm sorry, but that's how I feel. The nurses are a little bit standoffish at the beginning but now they are so kind, sometimes it just takes a little while to get to know them. As I told you before, the first time that I went to see him, I was desperate, I could not walk in a straight line, my tics were so horrific that I was having 50 a minute. I could still talk normally and be myself though. From my experience with him, he is much more receptive to neurological autoimmune issues than psychiatric. My mother was there with me and she said to him very directly, IVIG and steroids put my daughter in remission for 10 years, we need them again and he said ok.I also had my entire medical history typed him. He admitted me within a week...got everything 100% covered. and it was a bit of a " trial" treatment. The results were nothing short of amazing. I think he was shocked at the effectiveness. I had 0 tics. Since he saw me from 20% to 100% functional, he has stuck by my side 1000%. He never even once put any psychiatric drugs on the table- always says no you're issues are autoimmune. I think a lot of it is how you present it and present yourself. Frankly, yes I think he does like 1) the most complicated cases 2) the cases that will get him attention 3) The cases that are fixable. (not everyone is, it's a very sad trueth) Yes, this is sort of messed up but I have no issue with it because I fit all 3 categories. However, unlike you in my past, I had a very clear clinical improvement and remission from IVIG and steroids that last 10 ten years. Going to him with essentially no proof of anything autoimmune, no positive response to immune treatments, and then asking him for an immune modulating procedure might not really get you anywhere, but try. Go to him with 1 thing, don't overwhelm him with several issues. Don't mention anything alternative, he's 100% scientific article kind of guy. He is very skeptical of anything alternative. The chronic lyme, chronic infection piece will not fly with him. He does not prescribe long term abx either. Be very very straight forward until you get to know him better and build a relationship with him. Also, another thing that I did was that I kept going back!! Not every single visit was positive, but I always came back and stuck with him. Furthermore, who's to say if T. Anna went back to him and had the MRI like he prescribed, she wouldn't have a better experience. I'm not sure what else to tell you Ophelia.

Danactive helps my PANDAS symptoms tremendously. I drink 2 a day.

You could not be more wrong. I'm sorry but you can't make a genuine negative statement such as that without having at least one face to face interaction with him. Have you had that? Based upon what one person "said," you jump in, follow along and insult a great doctor. If someone jumped off of the GW bridge would you too? Its one of those types of situations. These are the types of statements that prevent patients from seeing doctors which could help them. I think we're all sorry that she had a bad experience- that being said, there's no reason for you to be making false and negative assumptions about the man which I can prove are 100% untrue. Very disheartening, your comments.

The study is closed? that means that they have enough?

Nancy, I absolutely agree with you here. I think the question for T.Anna now is what does her son actually have? That should be the first question in my opinion. T. Anna have you checked for Lyme disease? Have you gone down that path?

Interesting- not even a short improvement that relapsed?

I'm also really sorry about the experience that you had I feel awful that you wasted a day based upon positive things that I said. I really hope you find the right path soon.

Just to add, at one point Cunningham said herself that infections alone can higher cam kinase. Could the autism also be at play here instead of PANDAS? Have you thought it may just be infection/inflammation triggered and not autoimmune? Maybe your son does not have PANDAS. If multiple well PANDAS educated doctors refused to give you IVIG and told you no autoimmune issue is here.....i don't know.. I would maybe listen? Don't get me wrong, I absolutely sympathize with you and understand you are going through an extremely difficult situation, but really listen to these doctors. In my personal opinion, they really know their stuff.

But you have the history of not responding to immune modulating treatments.With all due respect, it seems like something doesn't fit. Dr. Hollander also told you the same thing if I'm not mistaken? This is now two very well PANDAS educated doctors telling you the same thing. I had a high Cam Kinase and anti-neuronals on the Cunningham test that BOTH decreased to normal after immune modulating treatments like IVIG and steroids. There was a marked difference in the numbers on the paper and with my symptoms. Again, I am so sorry about your experience, but doctor Najjar is truly an amazing doctor who ABSOLUTELY does believe in PANDAS and absolutely does treat aggressively when there's clear proof of an autoimmune disease. I just don't want your post to discourage people from seeing him. He is an AMAZING PANDAS doctor. He even manages to get IVIG covered for me 100%! Furthermore, I have to add that the nurses there have shown me nothing but kindness. When I couldn't walk because my tics were so bad, they helped me up. When I was an impatient, I had everything that I could possibly need. This thread is upsetting me considerably.. hearing people bash a doctor that most haven't even met who BELIEVES IN AND TREATS PANDAS AND GETS IT COVERED!

Excuse me, but do you mind me asking again what your son's cunningham results were?

I'm so sorry that you had a negative experience, but maybe do take his word for it- maybe your son isn't struggling from something autoimmune if IVIG did not help.

I had carcinoscin, strep nosodes, ignatia, nat mur,

Angelica does skype consultations. How high of a dosage of steroids have you done? Have you done IVIG or PEX? Those are the more aggressive ways of dealing with PANDAS vs antibiotics and psychiatric medications. In terms of helpfulness, I would give her a 4. She really did try-but none of the remedies lasted. In terms of kindness, I 'd give her a 9. She also said my case was very complex. She said it's easier the shorter time a child has been sick.

At first, I was very excited to work with her, she told me that she had excellent experience treating PANDAS. She prescribed me several remedies, all of which helped- but none which brought me to a better place than conventional medicine did. She is also ALL about alternative methods. You can't take antibiotics at all while trying it. I personally felt like, she didn't have enough of a balance between natropathic and conventional medicine. Personally, I discovered CEASE through her and I like that better.

I agree, but PANDAS is origin is an autoimmune disease, not an innate chemical unbalance. After if a child has other infections that have caused pych or neuro issues, that's different in my opinion. I respect your point of view.

PANDAS is an autoimmune disease- not a brain issue.

Would not recommend her. She's very good about answering, she's also a very kind person. However, I wasted close to 2,000 dollars with absolutely no resolution in symptoms.

I just saw Dr. N today. He has admitted me for 3 times over the past 3 years for IV steroids. Now, I'm following his IVIG protocol starting in early August. He is absolutely wonderful but he is a neurologist. I see him for PANDAS, but I have severe autoimmune mediated tics. I think if you don't have any neurological problems, it wouldn't make sense to see a neuro. PANDAS can be purely psychiatric. Just my two cents.

Yes, he does not see children. I am an adult and I believe there is a very long waiting list for him now. I'm not sure I started seeing him before the whole brain on fire thing.

Yes, he absolutely treats PANDAS. He has been treating me for PANDAS very aggressively for the past two years. PANDAS is written everywhere in my chart and I am admitted under autoimmune unspecified or encephalitis. He will not stop until he gets you well, for me he's put so many options on the table to actively treat the disease. He never stops! When I first went to him, I was completely disabled with tics, he treated me with 3 grams of IV steroids and within two weeks I was tic free. After that, I think he was shocked at how successful things were, he is very open to treating me. Everytime I don't feel well, he admits right away. T potter I have no idea where you are coming from but hugs2day I can assure that I have given Dr. N more than a "one visit" assessment and he is absolutely amazing!! It's very important how you go in and say your original issue though. I said that I had severe tics and ocd after an infection, in the past they resolved with IVIG and steroids He has never once even put the idea of pych drugs on the table for me. Always says no- you have autoimmune problem. He is a non native speaker of English, sometimes that can make him seem a little harsh at times but he's a wonderful man. I cannot say enough nice things. I was so concerned when I originally went to him about the chronic infection piece and all that, he honestly knows his stuff. He admitted me, got me well, and continues to be a lifesaver. Personally, me and my mom had to "be the doctor" in terms of PANDAS for almost 15 years. N will just take over and at first it's hard, but now it's the nicest thing! Being under his care has improved my quality of life to a point where I can't even describe. I don't research treatments anymore. I don't spend my time on forums. I can actually live my life. I'm also well without spending thousands on alternative treatments! Unfortunately, I don't know if he see's children. Also- piece of advice having dealt with this for 15 years- once you find a doctor who treats aggressively and admits for this. NEVER throw that away. NEVER walk out. T potter, I mean no offense. I"m simply shocked by what you wrote.

Hi Surfmom, Can elaborate a little bit more on the condition that your daughter has? Does she only have PANDAS? Sounds like she has a very severe case. Have you tried higher dosages of IVIG? I believe that higher dosages are what currently are being tested in the clinical trial?

I've been seeing Dr. N for 2 years now. He's a great doctor. I believe he will take your individual case into consideration but he makes very clear and decisive decisions. There's no room for you to be the doctor too.

For those of you with older kids, (females) what hormonal contraception works with PANDAS??? Anyone please help??

I always get the Cunningham Panel done before and after treatment so that it in my medical file. Its documentation that autoimmune treatments work and that an autoimmune illness is going on vs a chemical imbalance. Also helps getting insurance coverage, one extra thing to submit.

Yes, steroids exacerbate my tics A LOT. However, after they completely disappear for months.