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Dr.an Extreme Disappointment!


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Hi T.Anna   that is such a gracious response from you....thank you.   I am personally appalled that health care workers would ridicule a child under any circumstances. And as someone who had to h

My last comment on our visit with Dr.N...I hope ; )   Yes, DS's attire reflects his severe OCD. Unfortunately, we are beyond CBT at this point.   I don't feel the comments about "dressing your chi

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.

I also like the idea of writing the letter, but I would also suggest you get a 2nd person to read it over, to make sure you keep it short, and to the point. I had a similar appointment with a local neurologist, who had actually written a part of a textbook article on PANDAS (he showed it to my one session.) He clearly believed it could be there, but then went off on me (even knowing before I came, that I was coming to see if he could carry out PEX or IVIG that had been pre-approved elsewhere, but for various reasons, couldn't be carried out. When DS and I walked out of the office, both of us were speechless, and neither of us are EVERY speechless :wacko: Anyway, I wrote a letter, had a friend review it (she got it down to approximately 4 or 5 sentences). I told him that it was ok for him to have his opinion, but that we did not deserve to be treated that way, and that if he knew that he was not going to be willing to treat my son, he should have just told us before we even came...thus not wasting any of our times. He actually apologized!

 

OK...that being said. T.Anna...have you looked into bartonella, babesia and mycoP. I can't stress this enough, because you mentioned the rages. All 3 are endemic, especially if you live on the east coast. Other than mycoP, they are very difficult to get an accurate reading,,,DS20, after open heart surgery this year to replace an aortic valve, had a Galaxy Dx test (3 draw...to catch the life cycle) + tested his valve tissue. Only 1 out of 9 different ways of testing the blood (the PCR DNA on the 2nd day of testing) came back positive. Since it was testing DNA...it's 100% accurate. Otherwise, we would have had a false negative.

 

And, then there's the alternate tx route. Have you considered that? We, and I know others, have gotten tremendous results from doing alternative tx, like homeopathy, diet, ayurvedic, acupuncture, chiropractics, ART, etc. Plus, we also have done the allopathic (both my kids had 1 PEX, and approximately 7 IVIG's, and abx.) We didn't really start seeing results until we added in the complimentary (alternative treatments.) PM me if you want more info.

Edited by tpotter
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LaurenK, DS's results were very high CamKinaseII (210) all other neuronal were in high average ranges, but because of the CamKinaseII he was deemed "PANDAS highly likely".

 

Tpotter, I found a local pediatric neurologist who practices holistic medecine. I just need to get DS a bit more functional before I can start with her.

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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!

Edited by LaurenK
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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.

Edited by LaurenK
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Lauren- my daughter did not show improvement with her first two IVIG's. We continued and they have helped immensely (along with treatment for other underlying infections), but wanted to mention that its possible not to see improvement right way and still be autoimmune related. Just stating our case. thx

Edited by philamom
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LaurenK, I am really very sorry that my post upset you.

 

Your experience was one of the motivating factors behind my pursuing an appointment with Dr. N. I was impressed and inspired that he healed you and Melanie's son (as well as Susannah Cahalan) and I was hoping he would do the same for my son.

 

Unfortunately, my experience was quite different on many levels (for whatever reasons).

 

In my view, this forum is about sharing information and supporting each other, as we try to heal our children (and sometimes ourselves).

 

Sadly, there are enough people out there ready to tell us we are being misdiagnosed or have a simple psychiatric illnesses.

 

Lets continue to hold ourselves to a higher standard and be as supportive as possible.

 

Dr. Hollander remains part of our "team", more apologies if my posts were unclear.

 

T.Anna

DS15

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So sorry for what you are going through. I as well have had PANDAS-believing (and chronic lyme-believing) doctors tell me my son didn't have PANDAS or lyme and that he simply needed psychotrophic drugs. Just move on, this doctor isn't right for you, though he may have helped others.

 

My son as well had a high CamK (168) as well as sudden-onset OCD. Though my son has not had IVIG, he did have a year of PANDAS treatment with little improvement. I believe now his real problem never was PANDAS but that strep simply exacerbated an already existing lyme/bartonella/babesia infection. Lyme treatment is the only thing that has really brought any improvement for my son.

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on the nature of this discussion: we have this forum to, among other things, become better informed about our kids' conditions. In that light, I find the above exchange extremely valuable and want to restate its main issue which we can discuss as a separate topic.

The issue is how to deal with the "psychiatric" part of PANDAS, PANS and lyme?

Some drs want us to treat symptoms with various psychiatric medications which might be an option for older kids. The logic is that it helps them with symptoms, with, for instance, cytokines.

BUT when it comes to 3, 4, 5, 6, 7 year olds, can the logic be the same?

the question is not about the DR whose name was related to the original post, but about how we think about PANDAS. You can believe in it and treat it with SSRIs and you can believe in it and treat it first with long term abx.

Edited by pr40
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Lauren- my daughter did not show improvement with her first two IVIG's. We continued and they have helped immensely (along with treatment for other underlying infections), but wanted to mention that its possible not to see improvement right way and still be autoimmune related. Just stating our case. thx

 

Interesting- not even a short improvement that relapsed?

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on the nature of this discussion: we have this forum to, among other things, become better informed about our kids' conditions. In that light, I find the above exchange extremely valuable and want to restate its main issue which we can discuss as a separate topic.

 

You can believe in it and treat it with SSRIs and you can believe in it and treat it first with long term abx.

 

I may be misinterpreting you here, but on your last statement, as someone who spent 6 years going down the SSRI path before we could find someone who would truly treat the PANDAS with abx, I have to respectfully disagree. And this is coming from someone who has witnessed (and believes in) the benefits of the proper dose of SSRI with respect to helping control anxiety and OCD.

 

SSRIs do not "treat" PANDAS. They help modulate some of the behaviors that can result from the autoimmune condition, but they don't constitute "treatment" in the respect that "treatment" is intended to "cure" or at least promote remission of a medical condition. And, quite honestly, there's some evidence that using SSRIs might inhibit the body's inherent effectiveness at self-modulation of neurotransmitters once the autoimmune issues are successfully addressed. But if you're like us, and your child has been taking some dose for SSRI for effectively half his life at this point, removing that support is a difficult and potentially detrimental thing to do. So we soldier on, doing what works, and trying not to look back with too much regret about what we didn't know at first, what we wish we'd known before we went down the psych drug path, etc.

 

I am not against psych drugs. I am not against SSRIs. But I also wouldn't want someone new to PANDAS/PANs to tune into this forum and see a statement regarding psych drugs being used to "treat" PANDAS/PANs as I think that's misleading. Psych drugs can "take the edge off," they can offer the kid and the whole family some period of relief from the barrage of anxiety and other behaviors resulting from the underlying medical condition. In our experience, they can even help the kid get back to "normal" psychologically and socially as they heal medically. But they truly don't "treat;" rather, they can quell, modulate, support.

 

Sorry to be a stickler . . . tender spot for me, I guess. -_-

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