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Frustrated after meeting "specialist"


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My 6 yr old daughter, Becca, started all-day kindergarten this year, and was doing very well. When I met with her teacher at the first marking period in November 2008 she said, “This conference is 100% positive”. As the year progressed, there was nothing to indicate that there were any problems.

 

Starting on March 11, 2009, she has had four rapid-strep tests come back as positive. She has been given OMNICEF, AMOXICILLIN, AUGMENTIN combined with RIFAMPIN, and finally CLINDAMYCIN.

 

We are awaiting the results of a throat culture taken on May 22—the doctor’s office opens on Tuesday—although I will try to call tomorrow.

 

We started to get "frustrated" with her sometime around the middle/end of March, beginning of April for the following behaviors (some were not new):

• She began to confess thoughts, and things that were very minor. She had excessive and unjustified guilt (this was not new, however it was more pronounced).

• She would be very emotional. She would have a crying "fit" over something very small, and refuse to tell us why. (This also was not a new behavior; however, in the past, we always knew what she was crying about. This time it was much more frequent...and actually, she hadn’t had a “fit” in a long time.)

• She couldn't make a decision--she wouldn't choose between two things, she wouldn't say "yes" or "no". She kept saying "maybe, I don't know" or "maybe, yes or maybe no." (completely new behavior)

• She began to take a really long time in the bathroom, and she would just frequently sit and cry...we needed to tell her to finish up. (Completely new behavior).

Because some of her behaviors were not new, and my husband and his family have a history of anxiety (and as a child he had a problem with excessive guilt), we were not alarmed right away.

 

April 21, 2009--I was approached by her teacher because she was concerned that ever since Becca came back from Easter Break (April 14, 2009) there has been a real change in her behavior.

 

That really got the ball rolling. We met with her doctor, teacher and school counselor. We met with and set up appointments with a cognitive behavioral therapist.

 

The pediatrician told us about PANDAS, and he believed some of her behavior could be thought of as obsessive thoughts. Blood tests were ordered, and she was found to have a high strep titer count.

 

We were referred to CHOP (Children’s Hospital of Philadelphia). The appointment was set up with the Infectious Diseases specialist. I called down to CHOP to be sure that this was the right department for PANDAS. I was assured that it was.

 

May 22, 2009—we went to CHOP. First we met with 2 female residents. We gave them her medical file, lab results and emails from her kindergarten teacher. We also spoke at length about her changes in behavior. However, they really kept steering us back to medical history. Then they examined Becca, and left to confer with the specialist. The doctor then came in with an additional resident (specialist and 3 residents) and did his own examination of Rebecca. She passed with flying colors.

 

His professional opinion was that because she didn’t meet the criteria set out by Susan Swedo he doesn’t believe that she has PANDAS. He said to set her up with a pediatric psychiatrist.

 

He then began to explain that either way, there is no real treatment. IVIG and Plasmapheresis are very risky with side effects, and not really helpful. And the use of long term antibiotics has not been proven to be effective—based on some study that switched from antibiotics to a placebo, only to find no change in behavior.

 

Needless to say, my husband and I are beyond frustrated—we “wasted” time waiting for this appointment to see a specialist about PANDAS. Only to be told that even if she did have it, there is nothing he can do…Why would you even meet and examine a child with possible PANDAS, if you know that there is no course of treatment? I feel like Becca was used as a lab rat, and that we got nothing but a “brush off”.

 

What do I do from here? My heart is telling me that this is PANDAS!

 

I’m really scared. Her behaviors seem to have worsened. She is really jumpy/startles easily. She seems to have difficulty with short term memory. She needs to be prompted to do everything. She just stares into space. I tried to get her to draw or write, and she couldn’t do that unless I told her each word to write. She will run and laugh with her younger brother, but that is the extent of her playing.

 

Over the weekend, we met with my husband’s family at a campground for a few hours, and she wouldn’t play on the playground without a lot of coaxing. Many members of the family could easily see the changes in her.

 

Does anyone have any input? I would greatly appreciate it. I live North of Philadelphia, PA.

 

Thank you!!

 

 

 

 

Hi- My son Tyler experienced the same symptoms about a year ago. He had all the same behavior that you are describing. He also had severe tics. I took him CHOP (Pittsburgh) and several other doctors in the area. It's been a year and I would say he is 90% better. He's been tic free for six months. He still suffers from moderate ocd and some anxiety. I changes his diet( NO msg, perservatives, dyes, dairy and sugar) I take him to a wellness doctor, who put him on vitamin therapy. He is starting cognitave behavior therapy for the OCD on Thursday. I heard CBT is really helpful for kids with OCD. Good Luck to you and your family. It will get easier.

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I suppose I would be a little leary of the docs from the "Saving Sammy" book since I understand they only used abs. When Beth Maloney (the author) was asked by a PANDAS parent to put in some info. (she could have easily added an addendum or info on her website) about IVIG and some of the more current PANDAS research., she refused. So, while I think her book will be an interesting read, and give PANDAS some publicity, I wouldn't go to her (or even her docs) for the latest medical information on PANDAS treatment. Just my opinion, there are 2 sides to every story. Not all PANDAS kids are lucky enough to go into remission with puberty (like Sammy did), so I wouldn't count on that happening.

 

Would your pediatrician be willing to consult with Dr. Leckman at Yale?

 

I agree with T.Mom about getting your dd tested for Vitamin D deficiency. I don't think it would cause her symptoms (she sounds exactly PANDAS) but more and more people are getting vitamin D deficient so it would be a good thing to check. Even Stanford checked my dd for Vit D when she was hospitalized last year for OCD/anorexia (from PANDAS).

 

The Infectious Disease Specialist at CHOP said that she didn't have OCD and/or a Tic disorder, and so far, there is no evidence of a "waxing and waning" pattern. If she gets better, and then gets strep again, and then presents the same symptoms...then he would change his diagnosis....very generous of him, don't you think?

 

I think the infections disease specialist doesn't know diddly about PANDAS. Your dd sounds like she has OCD to me...all that confessing and inability to make a decision sounds ocd'ish to me (worrying/anxiety). Does this doc have a better explanation for why your dd became spontaneously insane coincidentally at the same time she got a strep infection? The reason you don't have waxing and waning is b/c you haven't gotten rid of the strep infection yet! (Even if you are able to get rid of the strep, there are some kids that continue to have symptoms due to chronically elevated CaMkinase II and/or anti-neural anti-bodies....see Worried Dad's recent post on Cunningham blood tests).

 

I agree with the others that the urinary issues (sometimes can be the only pandas symtpom), anxiety (hallmark of PANDAS), not wanting to play (my dd had this in a big way!), confessing, emotional lability (was a huge issue for us) are all typical/common PANDAS symptoms. Not all OCD is the typical "handwashing" and "checking"....our dd's OCD included contamination fears (and at the same time she refused to wash her hands for 3 weeks straight!), anorexia, defiance, insisting we do things a certain way (go through doorways in a particular order etc).

 

Stacielynne...is your son on prophylactic abs? Madeleine Cunningham's research really demonstrates that SC and PANDAS are closely linked...didn't you have a close relative with SC? With regards to CaM kinase II levels, SC really looks like a more severe variant of PANDAS (whereas tourettes is a whole different situation, not really related to PANDAS.) INteresting.

 

There is are no actual studies that show Psych. meds or CBT help kids with PANDAS OCD. On the other hand, there *are* studies that show IVIG/Pex and prophylactic abs to be helpful with PANDAS OCD. I think CBT has the potential to be helpful (at least unlikely to hurt) when the PANDAS is more under control (with abs, immunomodulation). When a child is full-blown PANDAS, IMO their basal ganglia/brain is too inflamed to be reasoned with. We do see an excellent child psychiatrist (OCD specialist), but it isn't clear to us that CBT is all that helpful (and it did nothing when her PANDAS was full blown). The Azith./advil is what is really making the difference. THe Prozac (10mg daily) I think is helpful too (long story, she's on a low dose...previously was on lexapro which resulted in serotonin syndrome...when we tried to wean her off, her anorexia returned in full force; dd also had some pre-existing social anxiety which the prozac helps with) but I should emphasize that those psych. meds must be used with extreme caution and most PANDAS parents find they do more harm than good.

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I am so sorry that your daughter has been going through this terrible spring. The first question that occurs to me is has she ever been "free" from strep during these 4 incidents in the spring?

 

Was there antibiotic effect?

 

If she is again showing positive this week would Azithromycin be considered? Many on this forum have found that long-term antibiotics (a month full strength) have had a positive effect, on resistant strep as well as OCD and "PANDAS" issues. I would assume full bloodwork has been run to rule out other issues?

 

My own opinion, with our daughter, is that when we saw a marked improvement with antibiotics (in our case Amoxicillan) weekly improvement in a diminishing of OCD "stuff" that it was NOT anxiety of some type. The fact that anxiety may "run in the family" as you say may be a reflection on familial inherited susceptibility to physical issues, though no reason to accept it.

 

If the teacher is commenting, other family members noticing, and you are concerned, you are right to be searching for some answers, keep going--

I have 4 children, and 3 of them have tested positive for strep 3 times (rapid-strep test). Becca is the only one who tested positive a fouth time. After the second round of positive strep tests, I asked if I should return for a follow-up, and I was told no. By the third round, the kids were put on Rifampin, and I was told that would take care of it. I even had my sons (ages 4 & 1-1/2) in for their well visits after the my 4 year old finished the Rifampin, and the doctor said their throats looked "great", so he wouldn't do a rapid-strep test.

 

I then breathed a sigh of relief, and began to focus on Becca's issues. Ironically, My Husband and I were in to see the same doctor for a "talk" consult about Becca earlier that day. I thought the "infection" part was over.

 

On the morning of Friday, May 8th, Rebecca mentioned just once that her throat "maybe hurts a little". That afternoon, was the last time she tested positive. On the following Monday, I insisted that the doctor do a rapid-strep on my other three children, and when they were negative, I insisted that he also send out a culture. They also came back a negative. So it seems that the Rifampin did work for the other 2 (my baby never tested postive, but was perscribed a 5 day course of OMNICEF on March 11 because his throat also looked red).

 

But to answer your question simply, no, I have no evidence that she was ever free from the initial infection.

 

I do not know what you mean by "antibiotic effect". Could you please clarify this for me?

 

As far as blood tests, the doctor ordered CBC, C-reactive protein, strep titers and thyroid. When I asked if we should do a screening for any vitamin or mineral deficancies, he kind of "snorted"--I believe that I do want to find a Nautroupathic MD to run a nutritional anaylsis. (pardon my spelling)

 

Thanks for your words of encourgement!

 

As for antibiotic effect, I think she had a positive result with her last round of medication.

 

Last week she had her last dose of Clindamycin (3 times/day for 10 days) on Monday afternoon. It seemed right around then, that she was able to say "yes" or "no" without much thought. When she couldn't make a decision, there wasn't a blank stare...she was thinking about it. Her after-school ritual seemed to "relax" a little. She has recently been very consistant with pulling out her lunch bag, and putting her folder on the countertop, and for a few days she didn't empty her book bag, and she even chose to go sit in front of the TV withoout washing her hands--granted she kept them in fists--but it was a break from her ususal routine.

 

However, on Thursday, we received an email listing her behavior changes from her teacher so we could take it down to CHOP with us, and her teacher seemed to think that she was getting worse. She wasn't even trying at alll...just staring...the crying fits had stopped...and she can't do a single task without being prompted.

 

After I read the email, I realized that this was also true at home. Her crying has started up again yesterday, but she doesn't seem to have any ability to think independantly...she must be told that it is okay for her to be done a task, or to start a task.

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Hi Kayanne,

 

your dd sounds like a classic case of PANDAS.

 

Ditto P.Mom's advice...e-mail Dr. K, get an appointment with Dr. Latimer.

 

Azith. worked well for us. That was the fourth antibiotic we tried. We're still on (55pounds) 250mg per day. We're working on getting IVIG in Northern CA (hopefully) in the near future. Otherwise we'll fly out to Chicago to see Dr. K.

 

Azith gets intracellular strep and is immune- modulating, anti-inflammatory....that is why we think it helped us. I would also try Advil. We give our dd 200mg daily (long term dose okayed by immunologist). Short term, you could give the advil 2-3 daily.

 

I'm a little confused as to the "theory" behind using long term antibiotics. I certainly understand the need to eliminate the strep infection, but how do the antibiotics help against an assult of strep antibodies attacking the brain?

 

I understand the use of advil...it worked wonders on a swollen tendon I had in my wrist 10 yrs ago.

 

Thanks for taking the time to respond...I truely appreciate all of the input that I have been recieving!!

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Kayanne, Oh that is so annoying.... I hate it when doctors misuse studies. That's some "expert" you've got.

 

His professional opinion was that because she didn’t meet the criteria set out by Susan Swedo he doesn’t believe that she has PANDAS. He said to set her up with a pediatric psychiatrist.

 

He then began to explain that either way, there is no real treatment. IVIG and Plasmapheresis are very risky with side effects, and not really helpful. And the use of long term antibiotics has not been proven to be effective—based on some study that switched from antibiotics to a placebo, only to find no change in behavior.

The study that the doctor was likely referring to was Swedo's own 1999 study that was entitled "A Pilot Study of Penicillin Prophylaxis for Neuropsychiatric Exacerbations Triggered by Streptococcal Infections. BIOL PSYCHIATRY: 1999;45:1564–1571 ." http://intramural.nimh.nih.gov/pdn/pubs/pub-6.pdf

 

The conclusion of the paper says, "Because of the failure to achieve an acceptable level of streptococcal prophylaxis, no conclusions can be drawn from this study regarding the efficacy of penicillin prophylaxis in preventing tic or OCD symptom exacerbations. Future studies should employ a more effective prophylactic agent, and include a larger sample size." (emphasis added)

 

When Swedo talks about this study, she says the compliance (whether someone took the drug each day) was poor. The problem with penicillin is if you miss even a single dose you are not protected for 24 hours. Swedo set about to fix this study in 2005, where she did achieve prophylaxis with two antibiotics showing their efficacy.

 

"Antibiotic Prophylaxis with Azithromycin or Penicillin for Childhood-Onset Neurospychiatric Disorders Biol Psychiatry 2005; 57: 788-792" http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf This is known as an active placebo affect.

 

Clearly your doctor did not actually read either study. I've placed links to both papers here in case you'd like to give him the actual references to read.... ;)

 

Also, I recommend reading the Kirvan and Cunningham's material that I cite here: http://www.latitudes.org/forums/index.php?showtopic=4785

 

I'd like to also underscore EAMom's comment that there are no actual studies that anti-psychotic drugs or CBT are effective with PANDAS. I can imagine conducting studies to test whether these methods work, but it's sort of amazing that doctors are willing to prescribe these untested, often offlabel, and non-blinded methods while ignoring the actual evidence-based research. Not sure what else to say except thank goodness you had a pediatrician who had read something about PANDAS.

 

Best Regards,

 

Buster

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I think you need to go with your gut. I was given several wrong reasons my son was doing what he was doing, but did not stop until I found someone who would listen. Unfortunately, we are having to go out of state to get things done quickly but we are headed to DC Friday to see Beth Latimer, MD (former head of neurology at Georgetown). She is in private practice and dedicated to treating these kids. I will post our results after we go but after talking to her on the phone I feel we have finally found the right person. The other way to look at it too is this is my kids brain and I want the best of the best to treat him and more than likely I will have to travel to find it. I think this disease is still very rare and the docotrs who are willing to take guidance from the limited reseaarch out there and treat it aggressively are few. Hopefully if we all continue to be vocal and share our stories this will change. Hnag in there...

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Kayanne, Oh that is so annoying.... I hate it when doctors misuse studies. That's some "expert" you've got.

 

His professional opinion was that because she didn’t meet the criteria set out by Susan Swedo he doesn’t believe that she has PANDAS. He said to set her up with a pediatric psychiatrist.

 

He then began to explain that either way, there is no real treatment. IVIG and Plasmapheresis are very risky with side effects, and not really helpful. And the use of long term antibiotics has not been proven to be effective—based on some study that switched from antibiotics to a placebo, only to find no change in behavior.

The study that the doctor was likely referring to was Swedo's own 1999 study that was entitled "A Pilot Study of Penicillin Prophylaxis for Neuropsychiatric Exacerbations Triggered by Streptococcal Infections. BIOL PSYCHIATRY: 1999;45:1564–1571 ." http://intramural.nimh.nih.gov/pdn/pubs/pub-6.pdf

 

The conclusion of the paper says, "Because of the failure to achieve an acceptable level of streptococcal prophylaxis, no conclusions can be drawn from this study regarding the efficacy of penicillin prophylaxis in preventing tic or OCD symptom exacerbations. Future studies should employ a more effective prophylactic agent, and include a larger sample size." (emphasis added)

 

When Swedo talks about this study, she says the compliance (whether someone took the drug each day) was poor. The problem with penicillin is if you miss even a single dose you are not protected for 24 hours. Swedo set about to fix this study in 2005, where she did achieve prophylaxis with two antibiotics showing their efficacy.

 

"Antibiotic Prophylaxis with Azithromycin or Penicillin for Childhood-Onset Neurospychiatric Disorders Biol Psychiatry 2005; 57: 788-792" http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf This is known as an active placebo affect.

 

Clearly your doctor did not actually read either study. I've placed links to both papers here in case you'd like to give him the actual references to read.... :)

 

Also, I recommend reading the Kirvan and Cunningham's material that I cite here: http://www.latitudes.org/forums/index.php?showtopic=4785

 

I'd like to also underscore EAMom's comment that there are no actual studies that anti-psychotic drugs or CBT are effective with PANDAS. I can imagine conducting studies to test whether these methods work, but it's sort of amazing that doctors are willing to prescribe these untested, often offlabel, and non-blinded methods while ignoring the actual evidence-based research. Not sure what else to say except thank goodness you had a pediatrician who had read something about PANDAS.

 

Best Regards,

 

Buster

 

Thank you so much for the information!! Everyone on these message boards has been a God-Send!

 

My husband has experiance with SSRI's and he knows first hand what they do to a 30 yr old brain...he and I are very very hesitant to go down that road with a developing 6 yr old. Thanks for your input on that...it makes no sense how people can claim that an SSRI is helping a PANDAS child, when it takes 6-8 weeks for the drugs to really begin working, and by then (hopefully) an episode is winding down.

 

Of course, I'm not an expert...and maybe it helps with the underlying natural propensity toward anxiety that a lot of these kids already have--but that is why we started her with a Cognitive Behavioral Therapist. My husband believes that if he had these skills as a child, things for him would have been smoother.

 

I don't believe that having her see a CBT will stop the PANDAS episodes (well, she is still in her first one--I think it's her first). She saw the therapist yesterday, and the therapist reported that she was "difficult"--not surprising to me! Her brain just can't do it right now--I've taken the midset that it's like having a broken leg...you wouldn't insist that a child walk on it because you know they can't. Well, her brain is not capable of some things right now, and I don't insist. Since we've changed our mindset on this she seems much happier--at home anyway.

 

Thanks again,

Karen

Edited by Kayanne
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I think you need to go with your gut...

 

Mom md,

 

Thanks. I am going with my gut. Diana Polhman spoke to me yesterday, and then she spoke to Dr. Latimer--she asked that I call her.

 

I spoke to her last evening, and she was very helpful!! I was expecting my pediatrician to call me today anyway to let him know what a letdown the visit to CHOP was. She told me to tell him to call her.

 

When I spoke to him today, he was very cautious about the "steriod burst" that Dr. Latimer had recommended. He would like proof of swelling in the brain before he prescribes it.

 

I told him that sounds reasonable, and if there is a test..let's get it done!

 

He agreed to call her, and then to get back to me. I haven't heard from him yet...but that was 1pm...I think it is reasonable to give him until tomorrow afternoon before I start to hound him!

 

I'm really hoping that "no news is good news", and that his is carefully considering what he has been told!

 

Good luck on Friday!

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I hope I am not repeating anything else others have said. First off, trust your instinct. When she was on antibiotics, at any time while she was on them, did you see ANY improvement? My son would continue to worsen until day 4 or so on a 10 day course of amoxcillan, then plateau w/o worsening, then begin to ever so slowly improve. Overall, it takes about 8 weeks for us to finally say he is more himself than not himself.

 

Do get those follow up strep tests. I don't ask, I just make an apointment with a nurse. I don't even see a dr. However, they have never refused to give him a strep test if I request one. If you need to, lie and say her throat hurts. Or find a different pediatrician, or take her to urgent care.

 

Have you and your husband been tested? Have you done simple things like change tooth brushes? It could be that she has a strep carrier even in her classroom.There have been times when the family dog tests + for strep. So many possibilities. When you take her and she does get a negative strep test, make sure they run cultures as well. My son's gotten negative rapids and poisitive cultures before.

 

As for my son, he's not getting treatment for the disorder. There is no set course of treatment for the disorder or even the symptoms. Each time he's gotten strep (3 times in 6 months) all he got was the 10 day cours of amox and he did improve very slowly over time. We went through ###### and we still have bumps in the road, but when you are fighting for your child to get better you find the strength.

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