Dr. N patients and treatment?

[Guest]

Hello, I'm looking to hear from some patients of Dr. N. I already talked with one user (thanks) but my mom wants me to talk to some more people.

 

My psychiatrist is referring me but not sure if I'll be accepted or not.

 

I wanted to know if his treatment is individualized per case by case basis? I ask b/c PANDAS treatment can actually conflict with Myalgic encephalomyelitis (M.E.) treatment. I.E. I know several M.E./CFS patients that were put on steroids and have been bedridden ever since (not good to suppress our immune systems as we have tons and tons of chronic infections and a very faulty immune system), I also have a CFS friend who did IVIG and was bed-bound unable to even lift her head for 6 months.

 

I was just wanting to know if he would be able to look at everything as a whole when deciding on treatment and if he would be investigatory into my very complex and debilitating case? The new theory coming out about CFS is that the entire vagus nerve is infected (they found this with a patient who passed in the UK), I just really need someone who will try and figure out what the heck is killing me and has been for the past 10 years.

 

Also, I've never seen a good neurologist (only one local who was terrible) so I'm hoping for sleep investigation as I can't hardly sleep at all now and haven't for 5+ years. (I take melatonin, zyprexa, zoloft, loads of klonopin, pro-gabba, and magnesium every night with little benefit or help). I've tried pretty much everything for sleep including the very expensive xyrem only fda approved for narcolepsy.

 

Thanks for any info as related to Dr. Souhel Najjar (seems like a fantastic physician!)

Edited July 25, 2013 by Guest

[LaurenK]

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.

[tpotter]

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.

We saw Dr. N for several visits, and he was actually very surprised when my DS turned out to really have seizures (no one ever believed it, despite previous EEG's. We were supposed to go back for an in-hospital eeg, but I got sick, and didn't want to expose either myself or other children to what I had (mycoP really flared.) We didn't go back, because we started a different avenue of tx (ART) for my son. Dr. N is a very meticulous dr, and I agree that he does all the work.

[hugs2day]

Does this doctor treat Pandas? Or does he do spinal tap for NMDA receptor?

 

I have been curious since reading the book Brain of Fire. My son was born with a Tetratoma that had to be removed at 9 months of age. it had teeth, bone, skin, etc. So I am very interested to hear more about this dr.

 

Sorry not trying to hijack this thread just very curious to hear more about this dr. I was not aware families were getting into see him for PANDAS diagnosis.

 

 

[tpotter]

He does not treat PANDAS, per se, but he does test for NMDA receptor if he thinks it is warranted. That's why he was really trying to make sure that all the symptoms led up to it, first, which included the seizures. I think he is an excellent dr. It was just that we no longer needed him.

[LaurenK]

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.

Edited July 25, 2013 by Sheila Rogers

[tpotter]

 

I certainly didn't mean it negatively. Simply that when I took my son in to him, I told him that my son had seizures and PANS. He did not appear to take the PANS term positively, so I just simply went the route of seizures and autoimmune and encephalitis. He actually said that he did not know exactly what to think about PANDAS/PANS. Also, that, although he was doing better, I wanted to make sure that in the future we wouldn't have difficulty getting him treated again, like we had in the past before we went to him, and that's why I was bringing him to Dr. N. We actually went 3 times (not just 1), and my DS also had an in-home eeg. When Dr. N actually saw that my DS was having seizures (no one really believed us), he was surprised, and said that he wanted him to go as an in-patient and do the eeg again. I got very sick, and couldn't take him, and after that, we decided to go an alternative route. We have had tremendous results with the route we have taken for the entire family. Now, my DS sees a local neurologist who takes our insurance to control the seizures (has been under control for several years now.) So, again, I'm not saying that Dr. N is bad...in fact, exactly the opposite. It's just that he was not as open to me about the PANS term, and my understanding was that he didn't call it that, but definitely treats for encephalitis, (which is what PANS causes, anyway.)

 

That being said, Ophelia22, I do think that Dr. N would be a good choice for you.

Edited July 25, 2013 by Sheila Rogers

[melanie]

My son has been with dr n for 2 1/2 yes. Saw him today. He treats him for pandas. The best dr I have ever been lucky enough to see.

[Guest]

@laurenK Thanks. It would be nice to have a doctor "take over". I'm absolutely spent in every way possible and I cannot research anymore and my mom just can't with everything that is life. So that would actually be a good thing, no doctor has ever done that.

 

@tpotter I don't even really know what is wrong with me. Would he be a good choice to getting to the bottom of a very complex and severely disabling illness/illnesses? I've received so many different diagnoses and Dr. T was the one who gave me the "pans" diagnosis but never was able to get in touch with him ever again. I definitely fit in with the chronic fatigue syndrome crowd, many of us have eerily similar situations and how we got sick and the fatigue, the fatigue that we have is literally unspeakable and indescribable and most of us can't leave the house or worse the bed. BUT on the other hand I have the sudden onset of eating disorders, and ocd, and slight tics. Then there's the inability to sleep. It's just a mess, and I guess I'm looking for someone to finally figure out what the he** is going on.

 

But yes, I'd love to get properly diagnosed, treated, and have a doctor take over and let me finally rest and be at peace and without the constant stress.

 

Thanks everyone for the feedback.

[Guest]

If not Dr. N, are there doctors out there who specialize in figuring out very complex cases for very very sick individuals? Looking at all possibilities, looking into auto-immunity, infections, etc. etc.

[T_Anna]

Ophelia22, have you ever had success with Advil or steroids?

 

Many with autoimmune encephalitis feel temporarily better after taking something that reduces inflammation.

 

T.Anna

[Dedee]

Where is Dr. N located?

[T_Anna]

New York university hospital

New York, NY

[Guest]

Ophelia22, have you ever had success with Advil or steroids?

 

Many with autoimmune encephalitis feel temporarily better after taking something that reduces inflammation.

 

T.Anna

Yes I take advil doesn't help.

 

Can't take steroids b/c it makes people with CFS (chronic fatigue syndrome) worse (bed-bound kind of worse).

[Guest]

Thanks @tpotter and @laurenk.

 

Helped a lot.