PANDAS MD in Virginia area

[browneyesmom]

My ex and I had a conversation on the phone today with our pediatrician. We will be doing a steroid burst starting tomorrow morning. He has been trying to reach Dr. K, but without success thus far. He said that he will keep trying; however, he did speak with a pediatric neurologist at the Children's hospital in our area. He indicated in that conversation that he thinks they believe in PANDAS, but that it is difficult to diagnose and that their position seems to be that IVIG is not helpful (based on a study... I think from Hopkins). In any case, he suggested we could make an appointment with them... that the treatment seems to be to treat the infection, then treat the remaining issues as one would treat them if they were not caused by strep.

 

I will acknowledge at this point that our daughter DID dramatically improve for a few days on the Amoxicillin last time she had a strep infection, but then tested + again only 8 days after she completed that antibiotic. She is on Augmentin and Azithromycin now - day 8... having some really intense rages last couple of days... aggressive (grabbing, hitting, kicking, biting... one time, yelled that she is going to kill me)... very out of character for her. Also, having urinary urgency, hallucinations, was chanting (hug, hug, hug, hug) non-stop while hitting and kicking our sofa during one episode when I asked her to pick up her coats on the floor.... and counselor at her school told me a couple of students there have noticed and asked her what is going on with our daughter - these two kids are not buddies and were seeing her at separate times for issues unrelated to our child.

 

So, at my ex's request, I did call and leave a message to get an appt with the pediatric neurologist at the Children's hospital near us. However, I can't help being concerned that this is not an area where he specializes... but more sort of an area he's heard of and yes, it does fall under neurology. Then again, maybe it is not PANDAS and perhaps she has a brain tumor or something else that we should have evaluated there... except that would not explain why she improved so dramatically on the Amoxicillin.

 

I have to ask... does anyone know of ANY docs in the VA area (or nearby) who DO work with PANDAS kids? I'm not trying to force her into a specific treatment modality at this point. I do not yet know what might be best for her... I just want someone with experience in the area to see her. We live in the southeastern part of the state, but I am not opposed to travel if it becomes necessary to get her the help she needs from someone with experience.

 

Thanks!!

[EAMom]

I think you should send Sue Swedo (as NIMH is in Maryland) an e-mail (or phone) asking her for a doc recommendation. Or...does she even see patients? Would she be willing to see your dd? Hey, it can't hurt to ask. Your dd sounds pretty bad off and you don't want to go messing around with a doc who is skeptical or unimformed, just to get a run around.

 

Dr. K. was out of town until March 2. Hopefully your ped can get in touch with him soon.

 

IMO, a neurologist who doesn't know much about PANDAS will not be helpful unless he/she is very open minded and willing to learn. Also, might be handy if you want an MRI ordered. Unfortunately, if your dd is really bad you will need to sedate her for the MRI.

[colleenrn]

I would suggest trying to get in touch with Dr. Susan Swedo at NIMH. She is a very caring doctor who saw my daughter in 2002 and who very promptly answered a recent email I sent her. She will know who specializes in PANDAS in this area. She is in Maryland.

 

The fact that you saw a dramatic change in your daughter with the Amoxicillin points towards PANDAS,in my opinion. It seems like the combo of Augmentin and Zithromax should be doing the trick, but this is such a tricky disorder, that I wonder if, given the initial response to Amoxicillin, would a trial of Clindamycin be warranted.

Prior to removing my daughter's adenoids and tonsils, she went through a list of antibiotics. The three months prior to the surgery, each antibiotic she was taking stopped working. I asked my doctor, who complied, to put her on Clindamycin. Within a day, her symptoms were cut in half, after a week, she was back to "normal". Once she had her tonsils and adenoids removed and the ENT said they were so large and cryptic (full of holes/pits) it was evident that no matter what antibiotic or dose of antibiotic, the strep was "hiding" in the crypts and would recolonize whenever she did not have enough antibiotic. Do you know if your daughter has large tonsils or cryptic tonsils? I am not suggesting all PANDAS children get a tonsillectomy/adenoidectomy, but in my daughter's case it was very helpful. Just thinking out loud, trying to put every possibility out there, b/c PANDAS is SO confusing/tricky/hard to get a handle on!

Good luck!

Colleen

[EAMom]

Our younger dd (non pandas) was put on liquid Clindimycin to try to clear her strep carrier state. It tasted and smelled so awful, we ended giving up on that rx after 1 dose (over an hour to get it into her, and lots of tears!). Hopefully others will have a better experience (or have a child that can take pills!) if they try that antibiotic.

[dcmom]

HI. I live in Washington, DC, and my daughter recently had her first episode of PANDAS. Dr. Swedo recommended a psychiatrist (who worked with her on some of the original studies): Dr. Susan Perlmutter in Herndon, VA (that is NoVa). I think some on this forum may have seen her as well. She was very nice, and informative. She seems to be very knowledgeable, and yet willing to admit there is just not enough known about this disorder. She put my daughter on daily abx, and is going to consult with dd's psychologist and pediatrician. It is comforting to have an MD, at least on your side, and able to help work with the other doctors.

 

Someone on this forum also recommended a pediatric neurologist in Maryland Dr. Beth Latimer. I had originally called her office, and they said she does work with PANDAS patients. I am not sure what a neurologist will do, though. We are 99% sure our dd has PANDAS, she had a pretty textbook episode- therefore, I am not sure what a neurologist can do for her. I hate to put her through a lot of testing, just to prove what we know. But if you are not sure it is PANDAS, then a neuroligist who does treat pandas could be helpful in confirming the diagnosis and/or eliminating other things.

 

My dd is still on abx from her first strep/pandas episode 2 months ago. I, too am afraid of the possibility that she has not cleared the strep. I am wondering if an infectious disease doctor would be helpful?

 

Please let me know how the steroid burst goes. I was so overwhelmed with info I didn't ask Dr Perlmutter if she is an advocate of that. Do you know if Dr Swedo is? I am thinking if/when my daughter has another episode, I would like to try it. What type of doctor did you find to do it? Does this mean you are considering IVIG?

 

Please keep us updated, as the information everyone shares here is so helpful!

 

Stay strong, your daughter is lucky to have such a pro active mom!

[colleenrn]

dcmom, What antibiotic is your daughter taking daily?

Thanks! Colleen

[dcmom]

Hi Colleen,

 

My daughter took 14 days of Cefadroxil prescribed for the strep (not a pandas diagnosis) by my pediatrician (she prescribed 10 days, I had extra in the bottle, so I continued). She has just switched to a 10 day course of therapeutic amoxicillan, after that I have a prescription for prophylactic amoxicillan indefinately.

 

We saw a definate improvement in her mood/ symptoms. Still some ocd like stuff, and moodiness hanging on.

 

Unfortunately her sister has strep now. She is on amoxicillan for 10 days. I will have them both cultured again when sister is off the abx for 2 weeks (unless any symptoms increase for either of them).

 

The MD we saw for PANDAS has had good experience with amoxicillan for pandas symptoms.

 

I am wondering if dd should see an ENT to check her tonsils. Her sister's came out in first grade, and she wasn't sick at all for almost 2 years. They were infected when they came out (after a strep infection). I guess it seems most think a T&A isn't helpful.

 

I am also wondering if there are any other ways of checking that the strep is eradicated (can a culture sometimes be negative, and there be strep somewhere else in the body?)- should we see an infectious disease doctor?

 

Have others found immunologists to be helpful (considering that is where the underlying problem is)?

 

My pandas daughter is a very picky eater. She is on the abx, and I am giving her probiotics (does it matter which kind)? What other simple things do others recommend (remember she is very picky) to boost immune system or help with daily abx intake? Vitamin C?

[AmySLP]

My daughter has an appt. with a pediatric immunologist/infectious disease team next Wed, the 11th. I explained all her symptoms issues in a post about 2 weeks ago. She is scheduled for a T&A on April 1st, but I've already rescheduled twice since last Fall b/c I wanted to be sure I was not having the tonsils and adenoids removed in haste (my ped. is really pushing for it, the ENT was hesitant) My fear is that if the tonsils play a role in the immune response, then removing them will be problematic. On the other hand, they sure haven't helped-she's been strep positive since last July/August and had mono. on top of that in January. SHe is on ABX daily b/c I asked for them based on the wonderful information on this forum. I will post the results of the immunology appt. next week.

 

Amy

[browneyesmom]

Amy,

 

My dd had mono a few years ago (very mild case). However, for several months after that, it seemed she was constantly getting strep throat.

 

I can't recall now if it was our pediatrician (I think it was) or our allergist/immunologist who told us that it can alter the shape of the tonsils such that it makes the child more susceptible to strep infections. Our allergist/immunologist checked her IgG levels around that time due to all the strep infections and found 11/14 to be low. He administered the pnuemoccocal vaccine, which raised them to levels that seemed to satisfy him.

 

I hope this helps in putting together the pieces of your daughter's puzzle. I'm looking forward to seeing what your pediatric immunologist/infectious disease team has to say; I hope it goes well.

 

 

My daughter has an appt. with a pediatric immunologist/infectious disease team next Wed, the 11th. I explained all her symptoms issues in a post about 2 weeks ago. She is scheduled for a T&A on April 1st, but I've already rescheduled twice since last Fall b/c I wanted to be sure I was not having the tonsils and adenoids removed in haste (my ped. is really pushing for it, the ENT was hesitant) My fear is that if the tonsils play a role in the immune response, then removing them will be problematic. On the other hand, they sure haven't helped-she's been strep positive since last July/August and had mono. on top of that in January. SHe is on ABX daily b/c I asked for them based on the wonderful information on this forum. I will post the results of the immunology appt. next week.

 

Amy

[browneyesmom]

I lived in the DC area for several years... although it's been a while, I'm somewhat familiar with the area. I do still have a friend in the area and we could probably stay there if we can't find anyone closer.

 

I don't know if Swedo advocates steroid burst or not. I did read these posts in response to my question last night and thought it was a GREAT suggestion to email her, so I did that early this morning before leaving to sub at the clinic at my daughter's school today. I gave her as much of an overview of the situation as possible, while trying to keep it brief. I did mention the steroid burst. I'm hopeful that if something stands out to her, she will comment in addition to offering me some names.

 

I am open to IVIG as one of the treatment options for her, but I really want her to see someone who is up to date on PANDAS before making any decisions. Although it seems things are leaning in that direction, no one has actually diagnosed her at this point. Without a diagnosis... how does one treat the patient? Sigh... my stress level is kind of high at the moment, my back is tied in knots... I know you all know what a difficult path this is.

 

Our pediatrician is the one who initially told us about PANDAS. I had never heard of it before about a month ago. He acknowledged that not much is known about it, so I have been researching ever since. I have access to PubMed because I am an RN, which helps a bit, but this forum has helped a tremendous amount. I brought him some research articles, gave him contact information for Dr. Leckman and Dr. Kovasevic (did I spell that correctly?) and he has been trying to contact Dr. K as I understood Dr. Leckman would be unavailable until sometime in March, but I just learned that Dr. K just got back in his office, so that is probably why he has not been able to reach him yet. Soooo... although we are working with our regular pediatrician and he readily admits he is not that familiar with PANDAS, he is wonderful to work with... no ego at all and happy to accept information from me. He readily changed the antibiotic from Amoxicillin to Augmentin this last time when I mentioned that I understood a lot of people were having success with Augmentin - we had just used Amoxicillin and he wanted to do that plus Azithromycin, so he did that with Augmentin instead. We discussed a steroid burst with this last diagnosis of strep and decided to wait a bit longer, then when we spoke again yesterday in a conference call with my ex, the three of us agreed to proceed as she seemed to be getting worse this past week.

 

But... my concern is what we are going to do after this. Where will we be? Will the strep continue to come back? While I was in the clinic today, my daughter was there at one point and another child was in there that I suspected of strep. I had to remind myself that she is still on antibiotics and probably safe. She's had so many over the years, it's a constant worry now... and I just started her on a steroid burst that may make her more susceptible. I also wonder where she will be if we do get the strep under control. Who will she be at that point? In what condition will her brain be? Are the continued strep infections continuing to damage her basal ganglia to the extent that some of this may not be recoverable? These are the reasons I do not want to waste time with someone who is not up to date on PANDAS. Maybe... just maybe (ok, so I doubt it seriously at this point but I'd like due diligence done with a brain scan) she does not have PANDAS, but if she does, I want someone who knows what they are doing to help her. I know we all do.

 

 

HI. I live in Washington, DC, and my daughter recently had her first episode of PANDAS. Dr. Swedo recommended a psychiatrist (who worked with her on some of the original studies): Dr. Susan Perlmutter in Herndon, VA (that is NoVa). I think some on this forum may have seen her as well. She was very nice, and informative. She seems to be very knowledgeable, and yet willing to admit there is just not enough known about this disorder. She put my daughter on daily abx, and is going to consult with dd's psychologist and pediatrician. It is comforting to have an MD, at least on your side, and able to help work with the other doctors.

 

Someone on this forum also recommended a pediatric neurologist in Maryland Dr. Beth Latimer. I had originally called her office, and they said she does work with PANDAS patients. I am not sure what a neurologist will do, though. We are 99% sure our dd has PANDAS, she had a pretty textbook episode- therefore, I am not sure what a neurologist can do for her. I hate to put her through a lot of testing, just to prove what we know. But if you are not sure it is PANDAS, then a neuroligist who does treat pandas could be helpful in confirming the diagnosis and/or eliminating other things.

 

My dd is still on abx from her first strep/pandas episode 2 months ago. I, too am afraid of the possibility that she has not cleared the strep. I am wondering if an infectious disease doctor would be helpful?

 

Please let me know how the steroid burst goes. I was so overwhelmed with info I didn't ask Dr Perlmutter if she is an advocate of that. Do you know if Dr Swedo is? I am thinking if/when my daughter has another episode, I would like to try it. What type of doctor did you find to do it? Does this mean you are considering IVIG?

 

Please keep us updated, as the information everyone shares here is so helpful!

 

Stay strong, your daughter is lucky to have such a pro active mom!

[T_Mom]

Re: Two antibiotics and the effect...

 

...He readily changed the antibiotic from Amoxicillin to Augmentin this last time when I mentioned that I understood a lot of people were having success with Augmentin - we had just used Amoxicillin and he wanted to do that plus Azithromycin, so he did that with Augmentin instead.

 

Hi BrownEMom--

So right now your d is on two antibiotics? Amox and Augmentin?

Can you tell us the dose of each and for how long is the prescription? (how much does your daughter weigh?)

 

I have not heard of two being done at the same time--

I can say that one doctor we saw earlier was not willing to prescribe Azithromycin even though the Amoxicillan my d. had been on had a very positive effect in calming OCD issues for our d. The doc. was not willing to try Azithromycin for 5 days with us when we wanted to switch to try it. Instead the doctor encouraged very intensive CBT and increase in SSRI. We just did not feel this was the track to try (yet) (were already doing CBT weekly and low SSRIs.) My daughter went on to continue with full strength Amoxicillan (1000mg/day) for the past 10weeks, and every week we have seen a continuing significant improvement. After 10 weeks her personality is more apparent than it has been for 3 months.

 

The CBT therapist (weekly) actually told us she did not think she needed to see our d. anymore -- 2 weeks ago. That was good news -- for now. She is certainly not 100% yet...and the OCD is still there, but she is much, much better, right now. I would not have thought to continue the Amox. longer if it were not for EAMom--Thankfully.

and I am thankful for the good advice/support from all on this forum--

T.Mom

[browneyesmom]

Hi TMom,

 

I was a bit surprised myself when our pediatrician said he wanted to put her on two antibiotics at once. I think he is concerned that perhaps we are not completely clearing the strep infections. That is one of the questions I asked him that day since she re-infects so quickly. I can't yet speak to the effect of the two antibiotics at once as today is day nine and as of last night, she was still having a LOT of trouble. She is with my ex now for the weekend; he picked her up right after school today and I won't see her again until Sunday evening. I asked him to take notes... he said he would let me know if anything out of the ordinary occurs. He did call me to report that she took her antibiotic this evening without any resistance or complaint, which is certainly not what I have been seeing here at home. However, she did start at 60 mg of the steroid burst this morning so I am praying that is going to have a positive impact for her as the last couple of weeks have been difficult.

 

Regarding the antibiotics.... When diagnosed with this most recent strep infection on Weds, Feb 25, he prescribed Azith for the usual 5 days (so we are done with that, but it should still be in her system) and Augmentin for 10 days. Her weight is about 60 lbs. I do not have the exact dosages of the antibiotics, but that would be good information for my records. Thanks for bringing it to my attention... I'm collecting all this data now. I'll call our pharmacy tomorrow and see if they can run a printout of that information for me and I'll post it here on this thread for you and others to see. I do not think it is anything other than the typical dose for her weight though.

 

Our daughter also improved dramatically on the Amoxicillin, until she got sick again just a few days later. I'm very eager to see what happens with this steroid burst. I'm glad your daughter has shown such improvement and I hope that will continue until she is 100% well!!

 

I too, am so thankful for all the support and input from this forum. I honestly believe my prayers to God led me here as He answered my cry for help!

 

Hope your weekend goes well,

BEMom

 

 

Re: Two antibiotics and the effect...

 

...He readily changed the antibiotic from Amoxicillin to Augmentin this last time when I mentioned that I understood a lot of people were having success with Augmentin - we had just used Amoxicillin and he wanted to do that plus Azithromycin, so he did that with Augmentin instead.

 

Hi BrownEMom--

So right now your d is on two antibiotics? Amox and Augmentin?

Can you tell us the dose of each and for how long is the prescription? (how much does your daughter weigh?)

 

I have not heard of two being done at the same time--

I can say that one doctor we saw earlier was not willing to prescribe Azithromycin even though the Amoxicillan my d. had been on had a very positive effect in calming OCD issues for our d. The doc. was not willing to try Azithromycin for 5 days with us when we wanted to switch to try it. Instead the doctor encouraged very intensive CBT and increase in SSRI. We just did not feel this was the track to try (yet) (were already doing CBT weekly and low SSRIs.) My daughter went on to continue with full strength Amoxicillan (1000mg/day) for the past 10weeks, and every week we have seen a continuing significant improvement. After 10 weeks her personality is more apparent than it has been for 3 months.

 

The CBT therapist (weekly) actually told us she did not think she needed to see our d. anymore -- 2 weeks ago. That was good news -- for now. She is certainly not 100% yet...and the OCD is still there, but she is much, much better, right now. I would not have thought to continue the Amox. longer if it were not for EAMom--Thankfully.

and I am thankful for the good advice/support from all on this forum--

T.Mom

[T_Mom]

Yes, BEMom--this forum continues to be a support and blessing.

I just sent you a PM re: the steroid burst dosing we have been given for our daughter. Ours was for Prednisone -- I assume yours is Prednisone? (It is higher than what we were given.)

Best,

T.Mom