Newbie with questions - DD diagnosed with PANS

[SpenceOhana]

Hello. Our daughter was just recently diagnosed with PANS or PANDAS by a pediatric psychiatrist because she came back negative on strep test and AOS titer was below 200, but she suffered from a respitory/sinus infection a few weeks before her sudden OCD symptoms occured. I've actually blogged about our story here: www.pansawareness.blogspot.com.

 

So 5 days after taking her antibiotics Azithromycin some of her OCD symptoms came back. Is this normal? I read that sometimes it can take 4-6 weeks to recover because the autoimmune process may be well in place. Her germ/contamination phobia came back as well as her incessant praying. I contacted her pediatrician and asked to do another round of antibiotics since the psychiatrist said a second dose may be needed. She agreed but said if it happens again, I'll have to bring her in. For those of you that treated for 4-6 weeks, how did you get your pediatrician to agree with? The pediatric psychiatrist did say, that if we run into a problem to have the pediatrician call her.

 

Also our son has had a lingering sinus infection. Should I have him tested for strep too? How many of your children had PANDAS when someone close to them was the carrier?

[Ebersolk]

You should find a PANS/Pandas treating doctor as your daughter may need longer term antibiotics or other things. If you post where you are near, someone will post the closest doctor.

 

My daughter was originally diagnosed with OCD, one year later with Pandas and then after 2 1/2 years LYME with co-infections. At this time, I am not sure if strep started it (she had high titers), the chicken pox vaccine (given within days of her symptoms) or the Lyme which was chronic by the time she was diagnosed. My best guess is un-diagnosed Lyme which started the autoimmune process. Her original western blot was negative and it was not until she did a test from Igenix with a co infection panel that we learned she had Lyme.

 

We are over one year treating for Lyme and she still has it. A knowledgable PANS doctor can assist with all of the testing needed.

[Hayley]

My DD also tested negative for strep and her titers were low on the original bloodwork (though they went up to just over 200 a month later -- significant enough to sway my ped, but interestingly, our PANDAS doc didn't seem to think it mattered one way or another since her clinical presentation was very clearly (to her) PANDAS/PANS. Her positive response to the abx was further proof to the doctors with experience in this area. When we first started abx and saw some improvement, we had made an appointment for a PANDAS doctor close to us, but were three months out from that. In the interim, realizing that I would never get my ped to prescribe enough antibiotics to hold us until that appointment, we scheduled a phone consult with Dr. T a PANDAS doc in NJ who is wonderful. We had assumed that he would recommend the longer term abx and that based on his recommendation, our ped would do the script, but in the end, he actually just prescribed the meds himself and worked with us until we could get into the specialist who is geographically nearby. Good luck!

[SpenceOhana]

We live in the Austin TX area. Our pediatrician said she has one patient diagnosed with PANDAS, and he see's a specialist in San Antonio for further treatment. That specialist's first available appt for new patients isn't until July. There is another pediatrician in San Antonio that specializes in PANDAS, left him a message but never got a call back. I will try again. I think our current pediatrician is willing to help our daughter, she just admitted she was not very familiar with PANDAS.

 

Reading up on Lyme disease. Do you and your daughter recall being bit by a tick? Did she get a rash? Now that I think about it my daughter did have a small round rash on her wrist. This was present on day 1 of antibiotics. I kept an eye on it thinking maybe it was a rash in reaction to the antibiotics. We put some topical cream on it, and it eventually went away.

[SpenceOhana]

 

 

My DD also tested negative for strep and her titers were low on the original bloodwork (though they went up to just over 200 a month later -- significant enough to sway my ped, but interestingly, our PANDAS doc didn't seem to think it mattered one way or another since her clinical presentation was very clearly (to her) PANDAS/PANS. Her positive response to the abx was further proof to the doctors with experience in this area. When we first started abx and saw some improvement, we had made an appointment for a PANDAS doctor close to us, but were three months out from that. In the interim, realizing that I would never get my ped to prescribe enough antibiotics to hold us until that appointment, we scheduled a phone consult with Dr. T a PANDAS doc in NJ who is wonderful. We had assumed that he would recommend the longer term abx and that based on his recommendation, our ped would do the script, but in the end, he actually just prescribed the meds himself and worked with us until we could get into the specialist who is geographically nearby. Good luck!

Hayley, did your DD's symptoms return when she finished antibiotics? Thanks for letting me know about Dr. ,T may have to put in a call to him.

[Hayley]

 

 

Hayley, did your DD's symptoms return when she finished antibiotics? Thanks for letting me know about Dr. T, may have to put in a call to him.

She is still on antibiotics. She was originally put on azithromycin(three cycles of five days on, five days off)and we saw a small, but noticeable change. The change was most noticeable BECUASE when she cycled into the days off, we would see she was getting worse. When we connected with Dr. T, he added augmentin to the mix so she was taking a dose of azith in the morning and a small dose of augmentin at night. The change was much more noticeable after that change. several weeks later when we started seeing Dr. Latimer, she dropped the azithromycin from my daughter's protocol and increased the augmentin significantly (2x per day with each dose double what she had been getting daily before) and within a couple of days we saw MAJOR improvement. After about three weeks, we felt like she was significantly improved (maybe 75%), but then she got sick with a virus and started regressing. A few weeks after that, we did IVIG and that's where we saw the real improvement. The doctor kept her on full dose of augmentin and plans to keep her on that dose at least through the end of the school year at which point (at best) we'll wean her down to a preventive dose. I think the plan is to keep her on some level of a maintenance dose until she's a teeanger (she's 7.5 now). Right now, we're just taking it step by step....

[nicklemama]

My son's PANS started after a flumist vax. Two days later, to be exact. What most here have found and I, in particular, is that you will get little to no help from your pediatrician. My son sees a PANS expert and I have found a biomedical doctor locally to help. Be prepared for a long road ahead. This started in 2009, when my son was 5. It took us a year to figure out what was wrong with him , find an expert and get the proper diagnosis. Today, after several years of taking antibiotics and having IVIG twice, I cannot say he is cured but he is recovering and doing well........until the next infection. It's been a long road. Find yourself an expert to work with now. You are at an advantage of having discovered this so soon. Also consider seeing if your child qualifies for the NIH PANDAS trial.

[SpenceOhana]

 

 

Hayley, did your DD's symptoms return when she finished antibiotics? Thanks for letting me know about Dr. T, may have to put in a call to him.

 

 

She is still on antibiotics. She was originally put on azithromycin(three cycles of five days on, five days off)and we saw a small, but noticeable change. The change was most noticeable BECUASE when she cycled into the days off, we would see she was getting worse. When we connected with Dr. T, he added augmentin to the mix so she was taking a dose of azith in the morning and a small dose of augmentin at night. The change was much more noticeable after that change. several weeks later when we started seeing Dr. Latimer, she dropped the azithromycin from my daughter's protocol and increased the augmentin significantly (2x per day with each dose double what she had been getting daily before) and within a couple of days we saw MAJOR improvement. After about three weeks, we felt like she was significantly improved (maybe 75%), but then she got sick with a virus and started regressing. A few weeks after that, we did IVIG and that's where we saw the real improvement. The doctor kept her on full dose of augmentin and plans to keep her on that dose at least through the end of the school year at which point (at best) we'll wean her down to a preventive dose. I think the plan is to keep her on some level of a maintenance dose until she's a teeanger (she's 7.5 now). Right now, we're just taking it step by step....

 

What is augmentin? A type of antibiotic? Also did Dr. T charge for phone consult?

[SpenceOhana]

My son's PANS started after a flumist vax. Two days later, to be exact. What most here have found and I, in particular, is that you will get little to no help from your pediatrician. My son sees a PANS expert and I have found a biomedical doctor locally to help. Be prepared for a long road ahead. This started in 2009, when my son was 5. It took us a year to figure out what was wrong with him , find an expert and get the proper diagnosis. Today, after several years of taking antibiotics and having IVIG twice, I cannot say he is cured but he is recovering and doing well........until the next infection. It's been a long road. Find yourself an expert to work with now. You are at an advantage of having discovered this so soon. Also consider seeing if your child qualifies for the NIH PANDAS trial.

 

Thank you. Where do I find out more information about this trial?

[Mayzoo]

My son's PANS started after a flumist vax. Two days later, to be exact. What most here have found and I, in particular, is that you will get little to no help from your pediatrician. My son sees a PANS expert and I have found a biomedical doctor locally to help. Be prepared for a long road ahead. This started in 2009, when my son was 5. It took us a year to figure out what was wrong with him , find an expert and get the proper diagnosis. Today, after several years of taking antibiotics and having IVIG twice, I cannot say he is cured but he is recovering and doing well........until the next infection. It's been a long road. Find yourself an expert to work with now. You are at an advantage of having discovered this so soon. Also consider seeing if your child qualifies for the NIH PANDAS trial.

 

Thank you. Where do I find out more information about this trial?

 

NIH study: http://clinicalstudies.info.nih.gov/cgi/detail.cgi?A_2011-M-0058.html

Edited March 10, 2013 by Mayzoo

[EAMom]

I contacted her pediatrician and asked to do another round of antibiotics since the psychiatrist said a second dose may be needed. She agreed but said if it happens again, I'll have to bring her in. For those of you that treated for 4-6 weeks, how did you get your pediatrician to agree with?

 

Give your ped this handout http://www.ocfoundation.org/PANDAS/ (I copied a bit of the article, and added the bold):

 

Use antibiotics for 3-6 weeks initially. Use of augmentin has anecdotally been found to be more effective at a relatively high dose as well as the cephalosporins (cephalexin, cefdinir) and azithromycin. Consider using probiotics but not at same time of the day; allow 2-3 hour window between. If no improvement is seen after 3-4 weeks, a physician may consider an alternate class of antibiotic treatment. If symptoms completely remit, a trial off the antibiotic may be attempted. If symptoms return, additional treatment may be warranted.

 

In the meantime, get family members throat cultured to make sure you don't a have a strep carrier in the household.

Also, I believe for the trial, you need evidence of strep (not just any resp. illness)??? but worth a call (and cultures of family members)! Strep in a sibling "counts" for the trial.

Edited March 10, 2013 by EAMom

[airial95]

Our pediatrician dx our son with PANDAS at a young age. We too never had any elevated titers (still don't) but symptoms started after a documented strep infection - so the pieces fit.

 

He started us with a 30 trial of abx. For us, we started to see a change after 7 days, but real improvement after 10-14 days. For many kids, a typical 7-10 day course of abx is just not enough.

 

My daughter was dx with PANDAS almost 2 years after my son - because she never had an untreated strep infection (we always get the whole family tested when my son flares, and she often tested positive with no physical symptoms), she clears within a few days of a course of abx, however our ped still gives her at least 30 days.

 

While nickelmama is right - many don't get help from their local peds, if you have a ped that is open-minded and willing to learn, keep them on board. Our ped has been our lifeline, and while we do see PANDAS specialists - it's nice to have the local doc be available when the need arises.

 

When we first started on our journey, our ped had also only treated a couple of kids for PANDAS, and my son turned out to be his most complex case, but he has learned so much from working with our specialists, and has been focused on helping our children that he is now one of the "goto" docs in our area/state. Both specialists that we work with often ask what our ped has said last time he saw our son because they have admired his approach to treatment. My daughter only had 2 appointments with the specialist because her case was so mild - we were told they didn't need to treat her because our ped had it handled, so unless something changed for the worse or our ped needed help - we didn't need to come back.

 

He too made us bring in our son for each abx refill in the beginning - he wanted to be able to track progress and see what was happening. While it seemed like an inconvenience at the time - it really was helpful because it allowed him to see the various changes in behaviors and how my son progressed. I wouldn't automatically consider your ped wanting to see your daughter again for a refill as being a negative thing - it wasn't at all in our case.

 

I'm not saying you want to be a guinea pig for your ped - and getting a specialist on board will help immensely - but all to often we throw away our local docs if they don't immediately "get it" - even if they are willing to learn, and I fear that it doesn't help our ultimate goal to get more medical professionals on board to help our children.

[nicklemama]

Believe me,I'm not throwing away the ped. Unfortunately, the reality is your ped may not help you. If you are lucky, your ped will be willing to learn and help. I have found a bio med doc locally that is willing to learn and is helping. Our ped, like many, can't be bothered to learn. I have given her journal articles and websites. She sticks to AAP guidelines and that's it. So, if your ped is not helpful, don't despair, there are experts and others. Just don't put all your marbles in your peds basket, so to speak.

[SpenceOhana]

Our pediatrician dx our son with PANDAS at a young age. We too never had any elevated titers (still don't) but symptoms started after a documented strep infection - so the pieces fit.

 

He started us with a 30 trial of abx. For us, we started to see a change after 7 days, but real improvement after 10-14 days. For many kids, a typical 7-10 day course of abx is just not enough.

 

My daughter was dx with PANDAS almost 2 years after my son - because she never had an untreated strep infection (we always get the whole family tested when my son flares, and she often tested positive with no physical symptoms), she clears within a few days of a course of abx, however our ped still gives her at least 30 days.

 

While nickelmama is right - many don't get help from their local peds, if you have a ped that is open-minded and willing to learn, keep them on board. Our ped has been our lifeline, and while we do see PANDAS specialists - it's nice to have the local doc be available when the need arises.

 

When we first started on our journey, our ped had also only treated a couple of kids for PANDAS, and my son turned out to be his most complex case, but he has learned so much from working with our specialists, and has been focused on helping our children that he is now one of the "goto" docs in our area/state. Both specialists that we work with often ask what our ped has said last time he saw our son because they have admired his approach to treatment. My daughter only had 2 appointments with the specialist because her case was so mild - we were told they didn't need to treat her because our ped had it handled, so unless something changed for the worse or our ped needed help - we didn't need to come back.

 

He too made us bring in our son for each abx refill in the beginning - he wanted to be able to track progress and see what was happening. While it seemed like an inconvenience at the time - it really was helpful because it allowed him to see the various changes in behaviors and how my son progressed. I wouldn't automatically consider your ped wanting to see your daughter again for a refill as being a negative thing - it wasn't at all in our case.

 

I'm not saying you want to be a guinea pig for your ped - and getting a specialist on board will help immensely - but all to often we throw away our local docs if they don't immediately "get it" - even if they are willing to learn, and I fear that it doesn't help our ultimate goal to get more medical professionals on board to help our children.

 

Thanks for the reply. I am messaging our ped tomorrow to see if she'll get on board with our pediatric psychiatrist and give our daughter a few more weeks of zith. She is on her second 5-day round of zith, and again we're seeing her OCD symptoms subside. I'm so afriad they will return this weekend if we don't continue zith for longer. Praying the ped gets on board with this. Her pediatric psychiatrist said to have her call her if there is an issue. So hopefully there won't be. When your children take it for 30 days, do their symptoms ever return after the 30 days?

 

Also a lot of you are mentioning getting a PANDAS specialist? By specialist do you mean a neurologist? psychiatrist? or other type of doctor?

[EAMom]

So hopefully there won't be. When your children take it for 30 days, do their symptoms ever return after the 30 days?

 

Also a lot of you are mentioning getting a PANDAS specialist? By specialist do you mean a neurologist? psychiatrist? or other type of doctor?

 

1) yes symptoms may return after 30 days

2) where do you live?--depends more on the individual doc. My dd's main PANDAS doc is her psychiatrist. However, other top PANDAS docs are immunologists, neurologists, rheumatologists, integretative docs, even peds...

 

But, be careful of neurologists in general, many of them are big PANDAS naysayers.

 

PS...I now see you are in Texas. Lots of PANDAS folk in Texas see Dr. Rao. Here's a link: http://www.latitudes.org/forums/index.php?showtopic=18094

 

You can also google "Dr. Rao PANDAS"

 

Also, contact the support groups in Texas, they may have more info on docs http://pandasnetwork.org/resources-new-research/support-groups/

Edited March 11, 2013 by EAMom