Is there any role for psychiatry with PANS? Feeling frustrated!

[ktdommer]

My son was let go from his psychiatrist a month ago as she didn't know how to help him. We got a referral to a top notch guy who declined my son's case as being complicated. Didn't know they could pick and choose.

Today he met new psychiatrist who within the first 5 minutes said she didn't know if she could help. 45 minutes later with a history but without in depth information about his mood she said, well we could try switching lexapro to Zoloft. So out the door we went.

I'm at an absolute loss as to who can help. Hospitalizations don't help, therapy is a waste as the patient has to be willing. Meds aren't working, haven't for years. Supplements for depression aren't working.

Do I blame all of this on PANS? When does he get better? Already doing antibiotics and just started IVIG.

He is 18 and nearly unbearable to live with. Do I need to seek yet another doc? Do PANS docs treat the psychiatric stuff?

Advice?

[dcmom]

What are the issues? OCD? Or more?

[MomWithOCDSon]

I do think that the RIGHT psychiatry can help, but I hear and empathize with your frustration. Considering how booked up and unavailable most of the recommended psychs in our area are (especially the ones that take insurance), you'd think this would be a hot, hot field for medical students. Unfortunately, yes, they can pick and choose because for every patient who is either turned away or turns away voluntarily, there are at least a dozen others eagerly awaiting an appointment.

 

We, too, were "dropped" by a long-term psychiatrist a few years ago upon finding PANDAS; he took the ride with us for a while and accepted the research papers and feedback we gave him as we learned more about the condition and how it impacted response to psych meds, etc., but he eventually said, "I can't keep up with you . . . you're way out ahead of me on this" (what . . . because I actually READ the research?!?!) and made it clear he'd welcome our exit to other waters.

 

It took us a while, but we did find someone who was PANDAS literate, if not thoroughly experienced, and who would engage in a give and take with us over tools, techniques and medications. Like a lot of things with PANDAS, though, I think we parents have to become quasi-experts ourselves and participate actively, rather than passively, in all psychiatric interventions. We have to serve as the backstop, backing up and supporting our kids, and standing between our kids and the professional when our experience, research and instinct tells us the psych has inadvertently slipped off the path that best suits our kid.

 

If OCD is the primary issue, you might want to consider a program like the one at USF, with great therapists, doctors and psychs (Dr. M., Dr. Storch) who know PANDAS, know OCD and know our kids. I would also recommend using the "Find Help" link on the IOCDF web site for researching providers in your area, as these folks tend to be (not without exception, but generally) not only well-versed in OCD but also "in the loop" with respect to research, advances and other initiatives of the IOCDF (which now includes PANDAS).

 

In the last five years, we've "gone through" two psychs and five therapists, continually looking for a better fit as we become more experienced, and as our DS becomes more mature. The process sort of never stops.

[ktdommer]

Thanks for replying. I got a call this morning from my son's neuro psyche with a recommendation for a doc in MI. Will be about a 2 hour drive. The doc got my message yesterday and then did some digging around with her colleagues.

My son's symptoms aren't classic PANS. He has some OCD revolving around the dog. Movement disorder is more of a leg tremor. He has a mood disorder and severe depression. Undiagnosed personality disorder and possibly bipolar.

I will explore the find link.

My husband and I both graduated from USF. If we have to travel, I think we would go to NJ to see Dr. B. Who specializes in Lyme and Bart but also treats PANS.

Sometimes I am questioning myself as doctors disbelieve or form inaccurate opinions about my son. When he is rejected, I feel rejected. I think I am wearing down as my son's only advocate. Been doing it for way too many years. May be losing my fight and now to tackle PANS another misunderstood condition. One day at a time again.

[MomWithOCDSon]

So, you don't have a medical doctor on your "team," so to speak, who is treating the PANDAS/PANs? As you probably already know, Dr. B. will treat the medical issues, but you'd asked about psychiatry, and that's not his area. I mention USF because there, you can get the whole package: Dr. M. who is very experienced in the medical treatments for PANDAS/PANS and Dr. Storch, who's psychiatric program for OCD is very highly regarded.

 

I have to tell you, too, that in the depths of my son's illness, the psychs and therapists we saw had all sorts of diagnoses and/or unofficial diagnoses (as in, "this looks a lot like . . . ," but they'd stop short of writing it in his chart): depression, SAD, bipolar, Asperger's, in addition to the OCD with which we'd been dealing for years prior, unaware of the strep link. I saw my son become someone he hadn't been before in the worst of all possible ways, and I've seen him come back to being himself in the wake of every intervention we could provide: medical, therapeutic and psychiatric.

 

I'm so sorry for what you're going through, and I know how hard it is. But I don't want you to give up, because there IS help out there, and your son can get to a happier, more functional state. Try to hang in there!

[ktdommer]

I'm feeling a little bit better after calling some PANDAS docs in Ohio. Spoke with Dr. K's office near Cleveland. Although she is pediatric, she treats until about age 22 or when a typical kid would graduate college. This opens a door for my son at age 18.

My son has a medical doctor who specializes in autism and Lyme who happens to have treated PANS. I need to dig deeper with him to find out if another specialized doc needs to be brought on board. It is our first in person appointment with him since the PANS diagnosis. We are doing so many integrative things while targeting virus and bacterial loads. I think we are on the right track. Just need to nail down the most helpful psych meds. It is this doc who ordered IVIG.

Many years of hanging in there but what else can I do?!
Thanks!

[Brese]

When my child's symptoms first began I brought her to a psychologist and psychiatrist first. The psychiatrist gave her cloxipam and lexapro. Only made the symptoms worse said she had OCD. The psychologist said ADHD but something was not right. Finally diagnosis of PANDAS that neither doctor had experience with or accepted as a diagnosis. The psychologist has a PHD and instructed us how to do exposure therapy and behavior therapy for OCD. The psychiatrist switched to her to prozac.

 

The IVIG was what worked. A few months after that treatment we were told she no longer needed to see the psychologist and she is a firm believer in PANDAS now. The psychiatrist removed her from the prozac because all symptoms are gone.

 

I like I having another support group in addition to the neurologist. I feel like they understand PANDAS better and can recognize the symptoms for other children. Sometimes its nice just knowing you have somewhere to turn if things are bad. My older child sees the psychologist still because the experience of the PANDAS in our house was very traumatic for her. You should try to get a good network of doctors and a good psychologist not only for the child with PANS/ PANDAS but helps for the whole family to be counseled.

 

[searching_for_help]

Most psychiatrists are not going to be helpful. I say "most", because a few are seeing what they've been taught is baloney. A few are beginning to see that all of these mental conditions are caused by something going wrong in the body that needs to be fixed. If you read enough about so-called "mental illness", you'll see that they are caused by infections, inflammation, deficiencies, etc. that need to be treated.

 

Psychiatrists aren't trained that way. Most are still under the idea that you can be "talked" out of your problems, OR, more currently, that a pill is going to make it all better. Sometimes those pills help some, but they aren't getting to the underlying issue. Those SSRI's might bounce some serotonin around for a while, but they don't help you make more. What's ridiculous is most (none that I've heard of) even TEST your neurotransmitters FIRST to see what you need! Our dd has been handed SSRI's for YEARS and when we finally get her tested through a doc (MY request), her serotonin was unbelievably high - probably causing more harm than good.

 

I'm not saying that some of the scripts they pass out aren't helpful for some. Some can help decrease anxiety to get them to a point they can work on things themselves. (OCD, etc.) But what I find ridiculous (from our experience) is that they try different pills without doing ANY medical workup at all - basically, you are a guinea pig. (Oooops, no, that one caused a BAD reaction so we'll try this one...) Good grief. How many people have committed suicide due to trying another pill that they didn't react to well? Is that "science-based" medicine?

 

Dr. Walsh's "Nutrient Power" is a good book showing how many of our mental illnesses are caused by deficiencies. Think about it. Those deficiencies aren't always caused by genetics, you can easily become deficient from good gut bacteria being destroyed by abx, malabsorption in the stomach from GERD drugs, etc. (I realize we need the abx to treat the infections, but then we need to heal the gut, where our vitamins and nutrients are utilized, for our whole body, as well as our minds.) We know from PANDAS/PANS that an infection can be the root of the trouble. Infection/inflammation is a biggy in causing problems with the mind.

 

Sorry, another rant. I'm so exhausted from the wasted time and dollars to psychiatrists, therapists, etc...

[PIK]

I agree with the above poster. I've run into much frustration with psychiatry in general. I am certain I have PANDAS and have suffered from it from years. They went as far as diagnosing me with schizophrenia - though NONE of the schizophrenia meds worked at all. What did finally work was Anafranil (clomipramine), and it worked extremely well. I went from being almost completely disabled to "normal" almost overnight. I see a neurospsychiatrist who finally prescribed it after three years of putting me through and trying everything. He still perseverates on and on about this schizophrenia I supposedly have, but aside from telling him that we both know he's wrong, I just let him go on and on. My frigging ASO was at 1600 and I have had all complications of strep, from rheuamtic fever to glomerularnephritis, even guttate psoriasis. I just ignore him and go to get refills basically, and am working with a rheumatologist as well, who is the only doctor that's believed me about my physical symptoms. I do plan to see a PANDAS doctor when I get a chance. I had called Dr. B's office in Ct, but the secretaries were rude to me. If your kid has OCD issues and phobias, I would highly recommend at least trying Anafranil. It saved my life, but then again everything works different for everybody. I'm certainly not a doctor and don't want to sway you one way or another, I'm simply stating how helpful it was for me. Good luck and just ignore them if they frustrate you. Most of the have big ego problems and are quite ignorant to many things, and they're unwilling to listen to something new or something they have not heard of or run across before.

[MomWithOCDSon]

PIK, I'm glad you found relief via anafranil, but as you suggested, everyone seems to be different. Before we discovered our DS had PANDAS, we were on a psych med merry-go-round, trying to find something that helped him. For him, anafranil was a total disaster . . . one of his worst responses ever.

 

One man's treasure is another man's trash . . .

[4Nikki]

Maybe in ruling out that they cant help and probably more importantly ruling out "psychosis" which appearemtly is a taboo fo social workers.we felt DD's physicist was pretty honest. His policy was his door was always open and when he realized DD's illiness was beyond his field of expertise he maid a referral.

[ktdommer]

Thanks for posting everyone. My son said new SSRI was making his tremor worse so he is switched again. At 18 he went in on his own to his 2nd appt with new psych not remembering he has already tried the exact same tpmed at exact same dose.mWish psychs of very young adult would advocate for parents being in appointment!! He has so many cognitive issues from Lyme and Bart. She knows that then takes his word on everything. Got to hope IVIG AG does it's magic and we can close the book on psychs.

[jferinga]

Our child's psychiatrist was very helpful in working with the pediatrician. Outside that she has not really "produced" much. She has advocated for us that PANDAS is real. She also aided in gettign the doctor to upgrade the diagnosis to "autoimmune".

 

Our psychiatrist prescribed an SSRI drug. I gave her research demnonstrating that SSRI does not work well with PANDAS kids. We tried a very low dose as recommended and stopped use when no results were seen.