New to pandas- need direction.

[Lbreshears]

I have an 8 year old son who has the following symptoms : OCD, severe separation anxiety, bits of rage or tantrums, suicidal thoughts, deterioration of learning abilities / concentration and a mild tic. The onset of these symptoms began October 2012. Regular pediatrician tried him on three different ssri's. Prozac (2 weeks, no improvement), Zoloft (2 weeks, intensified fits of rage and suicide) and he is currently on Luvox (limited help with OCD symptoms).

 

We felt like we weren't making any progress in treatment so we changed doctors. We visited a new psychiatrist last week (who was a pediatrician for 32 years previously) and he introduced us to A possible diagnosis of PANDAS or PANS. We did bloodwork on Friday to screen for strep and are waiting on results. Over the weekend I have scoured and spent hours investigating this disorder. I am waiting for the psychiatrist to call me back with results but have a few questions.

 

From what I can tell antibiotics are the first course of treatment when we determine what virus is causing symptoms. I have also gathered that I need to be as aggressive as possible in treatment. I have researched IVIG and Plasma exchange and feel like I am willing to go on with these treatments as soon as possible. I have read a few if these posts and seen there are a few doctors that people recommend. My question is would my son get better treatment if I traveled to see a certain doctor who specializes in pandas? Who would you recommend? I would like to take him to the top doctors if possible. Any suggestions or insight would be appreciated.

[beeskneesmommy]

I always recommend that you see a PANDAS/PANS specialist, if possible. Kudos to the doc who is checking into this, however! Where are you located? There are several specialists to choose from, but they are abooked solid, so getting and appt. ASAP is necessary as the wait can be several months.

Edited February 19, 2013 by Beeskneesmommy

[LNN]

The sudden onset of multiple symptoms certainly makes Pans worth looking into. You didn't mention what may have been the trigger. Was your son sick within a month or so of onset? I ask because tick bites can also cause sudden onset of Pans and October is a high risk for infection for Lyme. With the fall leaves, it's very easy to attract a tick and never know you've been bitten. So in addition to testing for strep, you may want to consider testing for lyme or bartonella (also carried by ticks). Your doctor will probably order a standard Western Blot titer test that looks for certain antibodies for Lyme. If it shows any response, it merits additional testing by someone who treats Lyme on a regular basis. The Western Blot has many shortcomings that I won't get into, but put it out there fyi. There is also a test for bartonella antibodies. Another common trigger for Pans is mycoplasma - a bacteria known for causing walking pneumonia.

 

So yes, treating with the right antibiotic for the right infection(s) for the right amount of time (generally much longer than a typical 10 day course) is the first step. None of the other treatments you mention will be very effective if you have a chronic infection.

 

As for Plasmapheresis (known on the forum as Pex - short for plasma exchange) is mostly done by one Pandas doctor out of Georgetown University. Many of our kids have had it done and while it's been helpful, it isn't a cure. High Dose IVIG (1.5-2 grams per kilogram of weight) is done by several of the Pandas doctors. Some advocate doing one treatment, one follows a protocol of multiple HD IVIGs every 8 weeks. Insurance coverage tends to drive which path you can follow. For some, IVIG is very effective. For some, it isn't. But I don't think it's a "cure". Rather, for those it helps, it helps by making the body strong enough to get on with the business of recovery. Most find that a subsequent infection can derail the recovery process. So IVIG isn't "curing" the body's autoimmune response. Not to say you shouldn't consider it. But have realistic expectations about the results.

 

I too once believed aggressive was better. I now feel there are less aggressive but equally effective options for those who are leary of Pex or IVIG or who don't have the financial resources/insurance coverage to do it. So make a decision in light of your son's past history of illnesses, your doctor's input, your resources and your medical beliefs. But don't feel a pressure that you must be aggressive and invasive as the only way to be successful. There is no "right" way to tackle this.

 

Telling us the general area of the country you're in and your personal preferences on treatment (e.g. assault on Baghdad vs. one step at a time) and we can suggest doctors who are Pans friendly.

[pr40]

different PANDAS drs have differently long waiting lists. so, get in line. do start with abx and see if it makes a difference. much here is try and see if it works. IVIG is not a cure. for some kids, it might be the last help they need.

did your dr order a complete immune panel or just strep? there are two kinds of PANDAS drs -- the old kind that still believes in one trigger (strep) and the new kind that recognizes that neuropsychiatric autoimmune problems can be cased by a variety of bacteria and viruses.

Check what "school" your dr belongs to.

[airial95]

I agree that you need to get treatment ASAP - and a PANDAS specialist is important. However, a few suggestions:

 

- If you have a local doc that is willing to treat/consider/learn about PANDAS - hang on to them. Having a local resource in addition to the experts is invaluable when flares pop up or illness occurs. Most of the experts will willingly work with your local doc, and it's a good way to continue to educate the medical community about this condition. You never know - they might be able to help another kid in the future because of what they learn with your child.

 

- When looking for a specialist - one thing to consider is that they all have varying backgrounds (pediatrics, neurology, immunology, psychiatry, etc...) so that may be a consideration into who you choose. Our first PANDAS expert was chosen because she was 1) local, 2) accepted our insurance, and 3) used a conservative (abx primarily) approach - which considering our son was 2 at the time - was important to us. Ultimately, after 2+ years, we started seeing another specialist - an immunologist - because our problem was recurring infection - so that was the logical choice for us.

 

- I would suggest focusing on "immediate" treatment vs. aggressive treatment. My son was able to get to 80-90% normal with abx alone (when not re-infected with strep). This gave us pause for many years before attempting anything more aggressive. at 80-90% he was fully functional, with no tics, and very manageable minor residual OCD that was helped with therapy. Weighing the risks of more aggressive treatment vs. the benefits is critical. (For the record- we are now going to be doing our first IVIG in the coming weeks) Some kids recover 100% with just abx, so it's worth a try before going more agressive in my opinion. If you can get your local doc to give you a 30 day trail of abx (I suggest azith or augmentin) while you research other possibilities - that would also help. My son saw noticable improvement after 7 days on abx, and drastic improvement after 10-14 days. He was by no means "cured" at that point - but the improvement was drastic - and he had no known infection at that time, and it had been 8 months since the infection that we suspect triggered his PANDAS. So proof of current infection isn't always necessary.

 

- Try giving your son ibuprofen to see if that helps symptoms. A majority of kids with PANDAS will see some improvement with ibuprofen because it helps reduce the brain inflammation. Its a miracle drug for our son - its worth a try.

 

- If you haven't already, keep a detalied log/journal daily of your son's symptoms. We used a numerical scale that we put into an excel spreadsheet that we graphed to track progress (if you PM me your email address, I'd be more than willing to share it with you.) The number scale helped us be more objective, and the graphs helped us track improvement, trends. Using this - we were able to see when treatments were working, as well as what symptoms tended to "spike" drastically at the onset of a new infection. (For example - when my son wets the bed - even if there are NO other symptoms happening - we're off to the ped for a throat culture. 9 times out of 10 it will be positive. We learned that from our log. Being quick to treat new infections has helped us minimize the severity of flares.) The log can also help doctors that are on the fence about PANDAS. Our local neurologist had heard of PANDAS, and did believe it exists, had even treated a couple of cases. However - he was under the erroneous belief that without elevated strep titers you could not have PANDAS. My son has NEVER had an elevated titer - even with 30+ strep infections. Our log convinced our neuro that there was no possibility that we were deailing with anything else BUT PANDAS when he saw the strong correlation between the spike in symptoms and positive cultures.

 

I know it can be overwhelming, and there is a lot of good advice on these boards and other places. But the best thing you can do is trust your gut. You know your child better than anyone. You know your family situation/resources better than anyone.

Edited February 20, 2013 by airial95

[Ebersolk]

I would also test through Igenix for Lyme. We did the standard westernblot which was negative yet after doing igenix testing for lyme and the co infections she was positive for 2 co infections and then a lyme doctor gave us a lyme dx on top of the pandas/pans diagnosis we already had.

 

You may want to call and see who you can get in with first. While there may be other doctors I would say the top treating doctors are Dr. Korvacic (spelling) in Chicago, Dr. Trifilletti (sp) in NJ, Dr. Latimer in VA and Dr. Bouboulis in CT. DR. T and Dr. L are pediatric neurologists and Dr. B is an immunlogist.

[Lbreshears]

Wow, thank you everybody for all of the information! I just skimmed it as we are on our way to the psychologist for an appointment. I will be reading again in a bit when i have time to process it. We live in Eastern Oklahoma. My son had his tonsils out at 5 due to recurring strep. To my knowledge he has not had it since but it seems rampant in the school he attends. There was really no known sickness at onset. This was only 4-5 months ago so hopefully they can find it through bloodwork. (Oh boy! They had to sedate him with versed just to do the work on him Friday). Not sure where my psychiatrist stands on aggressive vs conservative. We saw him Thursday and he is out of town this week.... I am trying not to panic until I can see him again. He did mention trying to qualify him for a study. I made the mistake of calling my insurance to see if they covered IVIG and mentioned pandas. We'll just have to see what comes of it. Trusting God to take care of it for me ; )

[airial95]

There is a study on IVIG through the NIMH - I don't have the information, might be in the pinned threads section at the top of the forum - but it's worth seeing if your child will qualify - they cover all expenses. I know they only need a few more children.

[Hayley]

Here's the NIH study info: http://clinicaltrials.gov/ct2/show/NCT01281969

[Lbreshears]

Thanks for the info on the study. I believe this is the one my psychiatrist is trying to qualify him for. He tested him for strep on Friday but results are not back yet. I know he did a quick test and 2 or 3 others. I think he won't qualify if he doesn't test positive.