Dr.an Extreme Disappointment!

[T_Anna]

So we went to another appointment. This time at NYU with Dr N. Very disappointed, basically believes DS is suffering from extreme depression and not PANDAS at all. His argument was that all these months of abx and the two HD IVIGs haven't helped and his titters and Cunnigham panel are not definitive. "You can take anyone off the street and they can have high titers or high Cam Kinase II." He didn't explain why someone who is only depressed has tics and choreoform movements, but seemed to think those can also "happen" randomly. He ran some blood work, wants us to run a MRI and other brain scans, but he hardly spoke to DS (who was talkative with the pediatric practitioner). Asked him two questions "you're very sad, right?" "you dont have many friends. how many friends do you have?"
He recommended we get a good psych on board and then they'll sort it all out a treatment plan. But that immune modulation alone won't help. He suggested minocycline, but when I asked about a script the assistant said they'd wait for the MRI etc to come back (not even scheduled yet).

He went on and on about how bad Advil was for DS (400 mg a day) and that it will wreck his body and skin. When DH said it helps with rages and inflammation, he responded there is no inflammation. "I wrote the papers on inflammation and am triple board certified."

Thin slice test? I caught two nurses (one who gave DS weight/height/blood test) call another nurse over in the hallway to point at DS's socks (quite a sight I agree, but heartless). I took the assistant aside and told her what happened and got an empty apology.

Poor DS. It took do much for him to leave the house and for what???

Now I have a doctor who wants to treat and is having trouble with hospital red tape and a doctor who told me and DH twice that he is triple board certified and wrote ALL the papers in immune related disorders.

I know he has helped some, but his attitude was one we've seen from many non-PANDAS believers. Maybe DS didn't present as a child who is so sick (didn't tic the whole time).

Crying in the car!!
T.Anna
DS15

Edited July 25, 2013 by Sheila Rogers
Please do not use doctor's name in critiques like this. It's best if people PM for details.

[PowPow]

I am so sad to hear this.

Are you saying the nurses made fun of your son?

I have really had it with idiotic, immature people who consider themselves healthcare professionals.

So sorry you wasted your time and your son had to be let down by poor attitude, pompousity and dismissal.

[lfran]

So sorry.

[michelew]

I'm so sorry you had such a horrific experience. He sounds more like a psychiatrist, than a neurologist whom supposedly is an expert with autoimmune encephalitis. Your experience reminds me of the first psychiatrist I took my son to two years ago. He said the same thing regarding depression, etc., then proceeded to prescribe his standard dose of Zoloft and Clonazapan, which once given, made my son 100 times worse. I know that I don't have to tell you this, as you're a fighter, but don't let this get you too down. We all just have to keep plugging along until we find the right healthcare professionals to best suit our children's needs. I'm sending a great big hug your way!

[PowPow]

T.anna, why exactly.did he think it was NOT autoimmune? What would make him feel it was autoimmune?

Also, can you go see Dr L in md?

She has brought my kids back.(more than once!)

[T_Anna]

Powpow, good question. What would make him think it was autoimmune? I don't know. Maybe if my son had more neurological issues?!

He was relatively coordinated, and spoke well and not catatonic...not sure.

 

Yes, the nurse who weighed DS was standing by the checkout and pointing at my sons socks with another nurse. She knew I caught her, thankfully DS and DH didn't notice. Bothered me since it's a neurological/epilepsy office, it's not a bank or advertising firm where people look clean and "normal".

 

Good news: when we got home Dr.S called that maybe she found a way around the red tape and if it works can admit DS on Tuesday for PEX. Just praying our psych plays nicely with hospital in house psych.

 

It's so up and down...exhausting. Now my other two kids came down with Strep too!!! Good thing I had the extra Greenstone z-packs (that Schulman didn't like).

 

When I got the appointment I was elated, because everyone was talking about him and I read Brain on Fire and was impressed. But Dr.T had warned me that everyone he sent there was referred to psych. Waste of $600 and a lot if anxiety for poor DS (who once again hates only me).

 

T.Anna

Ds15

[T_Anna]

Thanks MicheleW and Ifran.

[norcalmom]

I am sorry you worked so hard to see him and this was your experience.

 

He's not a pandas expert. He's and NMNDr expert. Go see a doctor that has a lot of pandas expertise. You may not get a pandas diagnosis, but at least at that point you will know that a doctor very familiar with the disorder you suspect has evaluated him before you move onto something else.

I'd also like to see his data on "anyone off the street" having raised camKII and anti neuronals.

Sounds like his arrogance speaking.

[MomWithOCDSon]

So sorry for the bad experience, T.Anna. How frustrating and demoralizing! And it didn't have to be that way, which is the part that makes me angry. The doctor doesn't think your DS has an autoimmune issue or PANDAS? Fine, but then he needs to explain the criteria clearly and treat you with respect. At $600 for an appointment, he owes you that much, at least!

 

It sounds to me as though he may be one of those doctors who responds well to being the one who sorts it all out and "discovers" the illness and the cure himself, but responds less well to engaged and involved patients who, rather than asking, "What IS this?! Can you please help me?!" are prone to saying, "We see this, this and this, we've had testing and found this and this, so now we're hoping you can help us find effective treatment." If he's not playing the god in the situation, he's not willing to "play" at all and pawns you off on Psych-Land.

 

Truly unfortunate. I've had such high hopes for him, too, based on "Brain on Fire" and the similarities in symptomology and treatment for Susannah and some of our kids.

 

Hang in there, follow your gut, and push hard with one or more of the very PANDAS-savvy docs. I guess it's possible they might be more prone to finding PANDAS than not, even where it's not definitive, but at least they will treat your son and you with some compassion and respect!

[philamom]

So sorry for your experience! Keep pushing.

 

The nurse's empty apology is not good enough. Very unprofessional! Thank goodness your son didn't witness it. You should write them a letter.

[pr40]

your experience confirms that there are only a few drs useful for us. it teaches us one more thing that we may need to decide what our kids need and go to the doctor we think will provide that. specialist opinion does not seem valuable at all.

I am wondering just how N would explain depression and why he thinks that that diagnoses fits your DS better than PANDAS.

[LaurenK]

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.

[T_Anna]

NorcalMom, when Dr.S called and I told her about the appointment she also said CamKinaseII isn't a random marker.

MomWithOCDSon, Your explanation makes a lot of sense. Dr.N went off about our "abuse" if Advil for almost half the appointment (5 minutes). It almost seemed that he was addressing "PANDAS patients and their Advil!"

Philamom, you're right that I should write a letter, maybe if I find myself angry with extra time (wish I'd taken their names).

Pr40, Great way of looking at it, yes, why is depression a more appropriate dx?

LaurenK, I'm glad he is treating you well. I don't agree with his observation, because they were a mishmash. One minute he's telling me to switch from Azithromycin to Minocycline because it helps with inflammation and the next he tells us there is no inflammation.

T.Anna
Ds15

[nicklemama]

Am I understanding this correctly, you paid $600 for a 10 min appt? That is a steep charge. I'm sorry it didn't go well. Seems to be the rule for PANDAS. No respect for the diagnosis.

[JoyBop]

t Anna I am so sorry you went through that awful experience with your son. There is a solitary no excuse for the attitude. A doctor can respectfully give his opinion and supporting observation and we can take it or leave it depending on the outcome, but that was totally uncalled for ! I hope you do write a letter and kindly ask theat they respect children that are struggling and suffering from day to day. I am outraged!!!

 

Best of luck with the PEX treatment and hospitalization. Don't give up!!