No Such Thing as PANDAS

[tnksmom]

I was reduced to tears today at the peds. neuro appointment. Just when I thought we were getting somewhere with our son's primary physicians understanding and believing what we were saying, we go to this new dr. (appt set up months ago when tics started by our ped). He said that if I would follow the work of Harvey Singer who is "the foremost expert on PANDAS" I would know that his studies prove that tics are not caused by strep. So, I researched Dr. Singer to find that he cannot PROVE the connection, although he continues to ask for further studies (to me that means he cannot disprove the theories). He admits that tics can be exacerbated by strep (although not caused by strep), stress, fatigue, etc. but does not approve of using prophylactic antibiotics (which we are not on, but I would not be against). His most recent findings were published on June 8th. (http://www.hopkinschildrens.org/newsDetail.aspx?id=4914)

 

The peds neuro we went to is very well respected in this area. He went on to say that Azith is of no use as an immunomodulator and seemed to belittle me when I respectfully) questioned that. I also researched that when I got home and found a 2004 report that was released about the immunomodulator qualities of Azith. He did say that some children take Haldol and other drugs for tics, but that he didn't see the need for my son because he is perfectly normal. It didn't matter that he has had major tic outbreaks three times and all three times he responded well to antibiotics, in this doctor's mind there is no such thing as a relationship between strep and tics.

 

I am hoping that this physician's viewpoint does not sway my primary physician, as I really need him on my team for this. We are fighting a huge uphill battle, and will continue, and next it will be with insurance coverage of this disorder that my son shows all the signs of but that really doesn't exist. . .

 

Just needed to vent-- hopefully we will hear from Dr. Murphy this week, because I am ready to fly to Florida for someone who doesn't have to question logic left and right, but that will just help us navigate through this very complex maze!

[patty]

I hear your frustration. Many allopathic doctors are not open minded and always want to see scientific proofs. However, these studies IMO are bias as they were setted up for certain conclusions. You will only find what you want to find!

 

Keep up with your effort. I am sure you will find someone who will be on board with you. I gave up conventional drs. long ago, and i have a much better relationship with alternative drs. and they have helped my son to recovery.

 

Pat

[Pudgeo]

I feel your frustration..I refuse to now believe one Dr..My son was mis-diagnosed with Seizures for a year by a neuro until I did private testing and found out it was PANDAS!!! My neuro realized she had made a mistake...So Now I listen to what they have to say and I still believe"Mommy Gut" is true! I take it all in and I decide what I feel is best after much research. Neuros just want to give out MEDS too...lots of them! Hang in there!! Sarah

PS My neuro told me special diets & supplements were worthless....(but she advocates the ketogenic diet)

[tnksmom]

Yes, he also told me I was throwing money out the window with Magnesium and Omega 3's. I will keep moving forward. He might not believe what he can't see (scientifically), but I have a greater stake here, and I believe what I have seen and continue to see!

[Dedee]

I am so sorry that you are having so much trouble finding a supportive knowledgeable physicaian. These issues are hard enough to deal with, without the medical community treating us like we are crazy. I am a nurse myself, and have been so embarressed by my co-workers and how small minded they can be. I mean really, how can we expect to move forward as a medical community if we insist that all patients must fit into specific categories or their symptoms simply aren't valid. It is exactly this type of attitude that holds back progress and prevents so many people from getting the help they so desperately need. I'm sorry to rant, but it makes me very angry when I hear of a family having to suffer more than is necessary because of doctors being so small minded. Please remember that you know your child better than anyone and you are a great parent for persuing this further and not stopping just because of someone else's ignorance. So many of us here have been where you are and understand your frustration. I took my son to several different types of "specialist" in my area before finally giving up and driving to Florida to see Dr. Murphy. Let me tell you, it is so validating to speak with someone who is so knowledgeable about PANDAS. It was as though she already knew my son. I am sure there are other physicians out there who can do the same for you. Just keep your determination and always remember that your child is lucky to have you for a parent. Accepting what they say is the easy thing, what you are doing is very difficult, but in the end it will be so worth it for your child and your family. Stay strong for your child, but be kind to yourself. Please keep us updated on your progress.

 

Prayers - Dedee

[kim]

tnksmom,

 

I think the first article is some of the latest work that Singer was involved in, and probably not going to help PANDAs patients get a trial of antibiotics. There are numerous other studies implicating immune system involvement and strep prompted exacerbations. It seems this is one tricky puzzle.

 

From Dedee's post above.....so true. Hang in there!

 

Accepting what they say is the easy thing, what you are doing is very difficult

 

 

http://www.ncbi.nlm.nih.gov/pubmed/1851949...Pubmed_RVDocSum

 

1: Pediatrics. 2008 Jun;121(6):1198-205. Links

Serial immune markers do not correlate with clinical exacerbations in pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections.Singer HS, Gause C, Morris C, Lopez P; Tourette Syndrome Study Group.

Collaborators (41)

 

Kurlan R, Tanner CM, McDermott MP, Pearson N, de Blieck EA, Kieburtz K, Denburg J, Lahey B, Leckman JF, Oakes D, Walkup J, Gilbert D, Lipps T, Coffey B, Geller D, Gianini L, Vivas F, King R, Grantz H, Hanrahan E, Peterson-Cremer B, Quatrano S, Dure L, Lane J, Pendley D, Coffey B, Shechter RG, Santucci L, Singer H, Bridges D, Budman CL, Petrizzi D, Baker K, Newman J, Como PG, Deeley C, Schlaggar B, Wernle A, Lowe T, Darlington S, Lindemann C.

 

Division of Pediatric Neurology, Johns Hopkins Hospital, Rubenstein Child Health Building, Suite 2158, 200 N Wolfe St, Baltimore, MD 21287, USA. hsinger@jhmi.edu

 

OBJECTIVE: Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections is hypothesized to be a poststreptococcal autoimmune disorder. If clinical exacerbations are triggered by a streptococcal infection that activates cross-reacting antibodies against neuronal tissue or alters the production of cytokines, then a longitudinal analysis would be expected to identify a correlation between clinical symptoms and a change in autoimmune markers. PATIENTS AND METHODS: Serial serum samples were available on 12 children with pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections participating in a prospective blinded study: 2 samples before an exacerbation point, 1 during the clinical exacerbation, and 2 after the exacerbation. Six subjects had a well-defined clinical exacerbation in association with a documented streptococcal infection, and 6 had a clinical exacerbation without an associated streptococcal infection. All of the serum samples were assayed for antibodies against human postmortem caudate, putamen, and prefrontal cortex; commercially prepared antigens; and complex sugars. Cytokines were measured by 2 different methodologies. RESULTS: No correlation was identified between clinical exacerbations and autoimmune markers, including: enzyme-linked immunosorbent assay measures of antineuronal antibodies; Western immunoblotting with emphasis on brain region proteins located at 40, 45, and 60 kDa or their corresponding identified antigens; competitive inhibition enzyme-linked immunosorbent assay to evaluate lysoganglioside G(M1) antibodies; and measures of inflammatory cytokines. No differences were identified between individuals with pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections with or without exacerbations triggered by streptococcal infections. CONCLUSIONS: The failure of immune markers to correlate with clinical exacerbations in children with pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections raises serious concerns about the viability of autoimmunity as a pathophysiological mechanism in this disorder.

 

 

http://www.ncbi.nlm.nih.gov/pubmed/1851948...Pubmed_RVDocSum

 

Streptococcal infection and exacerbations of childhood tics and obsessive-compulsive symptoms: a prospective blinded cohort study.Kurlan R, Johnson D, Kaplan EL; and the Tourette Syndrome Study Group.

University of Rochester School of Medicine, Mt Hope Professional Building, 1351 Mt Hope Ave, Suite 100, Rochester, NY 14620, USA. roger_kurlan@urmc.rochester.edu

 

OBJECTIVE: If pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections is a unique clinical entity, we hypothesized that children meeting diagnostic criteria would have more clinical exacerbations temporally linked to bona fide group A beta-hemolytic streptococcus infection than matched control subjects (chronic tic and/or obsessive-compulsive disorder with no known temporal relationship to group A beta-hemolytic streptococcus infection). PATIENTS AND METHODS: Subjects included 40 matched pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections case-control pairs who were prospectively evaluated with intensive laboratory testing for group A beta-hemolytic streptococcus and clinical measures for an average of 2 years. Additional testing occurred at the time of any clinical exacerbations or illness. Laboratory personnel were blinded to case or control status and clinical (exacerbation or not) condition. Clinical raters were blinded to the results of laboratory tests. RESULTS: The cases had a higher clinical exacerbation rate and a higher bona fide group A beta-hemolytic streptococcus infection rate than the control group. Only 5 of 64 exacerbations were temporally associated (within 4 weeks) with a group A beta-hemolytic streptococcus infection, and all occurred in cases. The number (5.0) was significantly higher than the number that would be expected by chance alone (1.6). Yet, >/=75% of the clinical exacerbations in cases had no observable temporal relationship to group A beta-hemolytic streptococcus infection. CONCLUSIONS: Patients who fit published criteria for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections seem to represent a subgroup of those with chronic tic disorders and obsessive-compulsive disorder who may be vulnerable to group A beta-hemolytic streptococcus infection as a precipitant of neuropsychiatric symptom exacerbations. Group A beta-hemolytic streptococcus infection is not the only or even the most common antecedent event associated with exacerbations for these patients. Additional intensive studies are needed to determine whether there is clinical or scientific evidence to support separating out subgroups of tic disorder and/or obsessive-compulsive disorder patients based on specific symptom precipitants.

 

http://www.ncbi.nlm.nih.gov/pubmed/1848536...Pubmed_RVDocSum

 

Age-related gene expression in Tourette syndrome.Lit L, Enstrom A, Sharp FR, Gilbert DL.

M.I.N.D. Institute, Department of Neurology, University of California at Davis, 2805, 50th Street, Room 2420, Sacramento, CA 95817, United States.

 

Because infection and immune responses have been implicated in the pathogenesis of Tourette syndrome (TS), we hypothesized that children with TS would have altered gene expression in blood compared to controls. In addition, because TS symptoms in childhood vary with age, we tested whether gene expression changes that occur with age in TS differ from normal control children. Whole blood was obtained from 30 children and adolescents with TS and 28 healthy children and adolescents matched for age, race, and gender. Gene expression (RNA) was assessed using whole genome Affymetrix microarrays. Age was analyzed as a continuous covariate and also stratified into three groups: 5-9 (common age for tic onset), 10-12 (when tics often peak), and 13-16 (tics may begin to wane). No global differences were found between TS and controls. However, expression of many genes and multiple pathways differed between TS and controls within each age group (5-9, 10-12, and 13-16), including genes involved in the immune-synapse, and proteasome- and ubiquitin-mediated proteolysis pathways. Notably, across age strata, expression of interferon response, viral processing, natural killer and cytotoxic T-lymphocyte cell genes differed. Our findings suggest age-related interferon, immune and protein degradation gene expression differences between TS and controls.

 

http://www.ncbi.nlm.nih.gov/pubmed/1699648...ogdbfrom=pubmed

 

1: Biol Psychiatry. 2007 Feb 1;61(3):273-8. Epub 2006 Sep 25. Links

Decreased numbers of regulatory T cells suggest impaired immune tolerance in children with tourette syndrome: a preliminary study.Kawikova I, Leckman JF, Kronig H, Katsovich L, Bessen DE, Ghebremichael M, Bothwell AL.

Department of Immunobiology, Yale School of Medicine, New Haven, Connecticut 06520, USA. ivana.kawikova@yale.edu

 

BACKGROUND: Post-streptococcal autoimmune inflammation of basal ganglia was suggested to be an etiological factor in some cases of Tourette syndrome (TS). Since regulatory T (T reg) cells play a major role in preventing autoimmunity, we hypothesized that a defect in T reg cells may be present in children with TS. We also postulated that group A beta hemolytic streptococcal infections could promote autoimmune responses by releasing exotoxins (streptococcal pyrogenic exotoxins [sPE]). METHODS: We analyzed peripheral blood of TS patients and healthy age-matched control subjects by fluorescence-activated cell sorting (FACS) on multiple occasions and determined the numbers of CD4(+)CD25(+)CD69(-) T reg cells. Further, we quantified the number of CD4(+) and CD8(+) lymphocytes with regard to Vbeta chains to which SPEs are known to bind. RESULTS: A significant decrease in T reg cells was observed in patients with moderate to severe TS symptoms compared with healthy age-matched control children. A decrease in T reg cell number was also noted during symptom exacerbations in five out of six patients. Further, we found a significant decrease in numbers of CD8(+)Vbeta18(+) T cells in moderate to severe TS patients. CONCLUSIONS: These data support our hypothesis that at least some TS patients may have a decreased capacity to inhibit autoreactive lymphocytes through a deficit in T reg cells. Interactions of host T cell immunity and microbial factors may also contribute to the pathogenesis of TS.

 

 

http://www.ncbi.nlm.nih.gov/pubmed/1848499...Pubmed_RVDocSum

 

Eur J Neurol. 2008 Jul;15(7):749-53. Epub 2008 May 15. Links

Immunophenotyping in Tourette syndrome--a pilot study.Möller JC, Tackenberg B, Heinzel-Gutenbrunner M, Burmester R, Oertel WH, Bandmann O, Müller-Vahl KR.

Department of Neurology, Philipps-University, Marburg, Germany. carsten.moeller@med.uni-marburg.de <carsten.moeller@med.uni-marburg.de>

 

BACKGROUND AND PURPOSE: The cause of Tourette syndrome (TS) is not precisely known, although several lines of evidence point at an involvement of the immune system in its pathogenesis. RESULTS: Here, we report the results of a pilot study investigating frequently analysed lymphocyte surface markers in 20 adult patients with TS (16 males; 37.3 +/- 15.8 years) and 20 matched controls (16 males; 37.5 +/- 15.3 years). Statistical analysis revealed significant differences for the investigated lymphocyte surface markers. The difference in CD69+/CD22+-B cells (23.0 +/- 10.5% vs. 13.1 +/- 6.1%; P = 0.001) and in CD95+/CD4+-T cells (41.5 +/- 12.1% vs. 24.6 +/- 10.0%; P = 0.0001) was still significant after Bonferroni-Holm correction. CONCLUSION: Our preliminary data indicate that TS may be associated with an increased peripheral immune activity.

[Chemar]

tnksmom I so feel for what you have been through.

 

you know the old saying "the proof of the pudding is in the eating?" I think if more docs paid attention to the wealth of crystal clear anecdotal evidence we would be a healthier people. If I were to have written down some of the %$#@*& that we have heard from conventional docs I think it would shock even them! If I had listened to most of them my son would have been in an institution drugged into a zombie state

 

there is MUCH still needed to be understood about PANDAS and all relevant research is valuable. But for a doctor to discount everything based on preliminary research by a single researcher...............well what can I say

 

 

anyways, I hope your hear from Dr Murphy if that is your choice but I did also leave you info on the other thread you had about a group of PANDAS specialists in Chicago that we have had good reports on from other members here

http://www.webpediatrics.com/practice.html

 

here is their PANDAS/PITANDS page

http://www.webpediatrics.com/pandas.html

[P_Mom]

Keep looking and stick to your gut and what you know!! We would not have gotten proper treatment either if we listened to our ped. neurologist..he looked us straight in the face and said he does not believe in PANDAS and perhaps we need to go somewhere else if we still want to pursue it...so, we did..and are treating for PANDAS and both sons are doing great! Who knows how things would be if we would have listened to him (and several other docs.) No one, and I mean no one, I don't care if it was the highest ranked, most "knowledgeable" doctor in the world.. no one could have swayed me. I saw what I saw with my own two eyes. Have they? I wonder what these "experts" would say if they were here and saw my son go from strong,very frequent neck tics and literally bouncing off the walls...to basically complete recovery and dissappearance of symptoms within one DAY of antibiotics!? (two times!!) We are now on prophylactic antibiotics and have had no reoccurances since!! Coincidence? I think not!

 

Whrer are you from?

[michele]

tmurphy@ufl.edu

This is Dr. Murphy's email address I had always used to talk with her. It may be changed by now. I have experienced the same hardships as you in trying to find the right Dr's. It has not been an easy journey. However, Dr. Muphy was the only Dr. who seemed to get PANDAS and tic disorders. I have a whole team of Dr's in place. A ped who will make referrals and writes scripts based on the experts advice, a neuroligist who also doesn't believe in PANDAS and diet but knows Tourettes well and can deal with its symptoms with meds, an immunolgist who will prescribe long term antibiotics and can do IVIG if needed, an Occupational therapist for weekly Ot visits, soon to join the team is an audiologist to work with the auditory processing deficits, and an eye Dr. to work with the vision, Dr. Muphy who is a psychiatrist. I have never done the cognitive behavioral therapy but would like to look into it to deal with the emotional behaviors and breakdowns he has when things don't go his way. It is funny five years ago a Dr. gave me papers on PANDAS and said this may be what he has, the Dr.left the country when he lost his green card, after that I never found a Dr. other then Dr, Murphy who knows PANDAS. We went five years with little help and guidance. Looking back I wonder if the behaviors wouldn't be as bad if they were treated sooner. He had repeat exposure to strep and waxing episodes over and over. Has anyone here tried ABA therapy? The behaviors he has are way worse then the tics! Look on the Yahoo group sight for child OCD and parenting it has discussions on PANDAS OCD. http://health.groups.yahoo.com/group/ocdandparenting/post

 

Michele

I was reduced to tears today at the peds. neuro appointment. Just when I thought we were getting somewhere with our son's primary physicians understanding and believing what we were saying, we go to this new dr. (appt set up months ago when tics started by our ped). He said that if I would follow the work of Harvey Singer who is "the foremost expert on PANDAS" I would know that his studies prove that tics are not caused by strep. So, I researched Dr. Singer to find that he cannot PROVE the connection, although he continues to ask for further studies (to me that means he cannot disprove the theories). He admits that tics can be exacerbated by strep (although not caused by strep), stress, fatigue, etc. but does not approve of using prophylactic antibiotics (which we are not on, but I would not be against). His most recent findings were published on June 8th. (http://www.hopkinschildrens.org/newsDetail.aspx?id=4914)

 

The peds neuro we went to is very well respected in this area. He went on to say that Azith is of no use as an immunomodulator and seemed to belittle me when I respectfully) questioned that. I also researched that when I got home and found a 2004 report that was released about the immunomodulator qualities of Azith. He did say that some children take Haldol and other drugs for tics, but that he didn't see the need for my son because he is perfectly normal. It didn't matter that he has had major tic outbreaks three times and all three times he responded well to antibiotics, in this doctor's mind there is no such thing as a relationship between strep and tics.

 

I am hoping that this physician's viewpoint does not sway my primary physician, as I really need him on my team for this. We are fighting a huge uphill battle, and will continue, and next it will be with insurance coverage of this disorder that my son shows all the signs of but that really doesn't exist. . .

 

Just needed to vent-- hopefully we will hear from Dr. Murphy this week, because I am ready to fly to Florida for someone who doesn't have to question logic left and right, but that will just help us navigate through this very complex maze!

[tnksmom]

I appreciate all of the support and information.

 

 

Chemar, I didn't overlook the Chicago doctor, but was a little nervous about some of the posts saying he pushes IVIG so hard- I am not ruling him out though, so thanks for the reminder Oddly enough, it would be cheaper and quicker to go to Florida because we have family there so a car and accomodations, also less travel time. Funny how that works out- but if Dr. K. ends up being the better choice, I will go that route of course.

 

This continues to be so difficult because currently our son is doing fine. We see a few tics each hour, and can handle that. However, before the three courses of antibiotics, there were so many that we couldn't accurately count. The moodiness- that is actually harder to deal with, but even that is better than it was sans antibiotics. I know that our pediatrician will follow the advice of Dr. Murphy or Dr. K, because he admits he just doesn't have a course of action for this. Right now, I haven't had any communication with any physicians for at least a week (although I did leave another message with Dr. Murphy on Monday or Tuesday to see if she has recieved the records yet, haven't heard back). So we wait. . .

 

These boards are so very helpful-- thanks everyone!!

 

TnKS mom

 

 

tnksmom I so feel for what you have been through.

 

you know the old saying "the proof of the pudding is in the eating?" I think if more docs paid attention to the wealth of crystal clear anecdotal evidence we would be a healthier people. If I were to have written down some of the %$#@*& that we have heard from conventional docs I think it would shock even them! If I had listened to most of them my son would have been in an institution drugged into a zombie state

 

there is MUCH still needed to be understood about PANDAS and all relevant research is valuable. But for a doctor to discount everything based on preliminary research by a single researcher...............well what can I say

 

 

anyways, I hope your hear from Dr Murphy if that is your choice but I did also leave you info on the other thread you had about a group of PANDAS specialists in Chicago that we have had good reports on from other members here

http://www.webpediatrics.com/practice.html

 

here is their PANDAS/PITANDS page

http://www.webpediatrics.com/pandas.html

[Chemar]

Ah ok I wasnt aware of the pushing for IVIG, and as that is an area I am not very clued up on I dont really know all the pros and cons....

 

we really liked Dr Murphy and when it comes to PANDAS, at least you know this is someone at the forefront of the research and doesnt look at you like you are from Jupiter Even tho my son didnt have PANDAS we stayed under her care for a while, as my son was seeing one of her then interns (now abroad sadly) who REALLY helped us understand the OCD/tic link in Tourette and he provided a form of CBT for my son too. It was a blessing to us at a time when he was still on the meds and it was also how we got the help to wean him off all the meds.

 

At the time my son saw Dr Murphy, although she certainly knew that diet and supps could be beneficial, we were seeking a far more natural way of helping my son cope with his TS/OCD etc, once we knew he wasnt dx PANDAS. We moved on when her associate took a position abroad as the only treatment she seemed to offer was to keep trying different TS /OCD meds to deal with what was then a very very severe Tourette Spectrum case

 

but I have no doubt that when it comes to PANDAS she is an expert. My only concern for you too is a "short term" evaluation....as many have found, one visit and a throat swab doesnt bring the same clarity as series of titre testing and clinical evaluations that long term care under a good PANDAS physician brings. Hopefully Dr Murphy might even be able to refer you to someone clued up nearer you

 

hoping you start seeing lots more light in that tunnel. dont give up hope as from our experience and others, it often takes a bunch of misses till you get a hit with a good doctor who "gets" that there is more to tics and OCD than what the old medschool textbook said

[tnksmom]

Chemar-

You are right about the "short term" eval; I have had some of the same concerns. I work two jobs (teacher/waitress) so it would be somewhat difficult to afford (timewise and financially) monthly trips, but thankfully if we need to go a few times I can work extra hours at my second job to finance if need be. I have no idea what the insurance company will do with this, so there may be a huge expense there. My hope is that if we make the connection with her that we will have a place for our own pediatrician to go for questions. We have tons that he cannot answer at this time and he is the type that will connect with another and use their expertise. We also will likely need referrals to other specialists that we can do locally, we just need to know who she recommends. We MAYBE could do this with a phone consult, but I truly believe that in order to not feel rushed and miss something, an in person visit would be worth the expense. Perhaps in my mind, as a mom, I will at least feel that I am doing all I can if I see Dr. Murphy herself, as one of the foremost experts, and if not her, I will try to see Dr. K (just refuse the IVIG until I know more about it).

 

Thanks again for your support and suggestions!

TnKS Mom

 

 

 

Ah ok I wasnt aware of the pushing for IVIG, and as that is an area I am not very clued up on I dont really know all the pros and cons....

 

we really liked Dr Murphy and when it comes to PANDAS, at least you know this is someone at the forefront of the research and doesnt look at you like you are from Jupiter Even tho my son didnt have PANDAS we stayed under her care for a while, as my son was seeing one of her then interns (now abroad sadly) who REALLY helped us understand the OCD/tic link in Tourette and he provided a form of CBT for my son too. It was a blessing to us at a time when he was still on the meds and it was also how we got the help to wean him off all the meds.

 

At the time my son saw Dr Murphy, although she certainly knew that diet and supps could be beneficial, we were seeking a far more natural way of helping my son cope with his TS/OCD etc, once we knew he wasnt dx PANDAS. We moved on when her associate took a position abroad as the only treatment she seemed to offer was to keep trying different TS /OCD meds to deal with what was then a very very severe Tourette Spectrum case

 

but I have no doubt that when it comes to PANDAS she is an expert. My only concern for you too is a "short term" evaluation....as many have found, one visit and a throat swab doesnt bring the same clarity as series of titre testing and clinical evaluations that long term care under a good PANDAS physician brings. Hopefully Dr Murphy might even be able to refer you to someone clued up nearer you

 

hoping you start seeing lots more light in that tunnel. dont give up hope as from our experience and others, it often takes a bunch of misses till you get a hit with a good doctor who "gets" that there is more to tics and OCD than what the old medschool textbook said

[P_Mom]

I have been dealing with Dr.K for a year now....he has never once "pushed" IVIG....... I just felt like I needed to mention that because he is an excellent Dr. for PANDAS and I wouldn't want anyone to be scared off by that....doctors for PANDAS are too hard to find.

[tnksmom]

I have been dealing with Dr.K for a year now....he has never once "pushed" IVIG....... I just felt like I needed to mention that because he is an excellent Dr. for PANDAS and I wouldn't want anyone to be scared off by that....doctors for PANDAS are too hard to find.

 

Thank you for that input, I am glad to hear that you had a good experience with Dr. K. It helps as we try to make a decision about what to do next. We still have not heard back from Dr. Murphy (and the assistant told us she would call back in a few days- it has been a week and a half, seems longer!).

[bmom]

Just wanted to chime in that I also believe Dr. K to be a great doctor when dealing with PANDAS. We were able to do a phone consult for $300. He does not push IVIG. He told me a step by step plan to help my son with IVIG being the last resort. He never encouraged me to use him for the IVIG either. He seems to be the most knowledgable doctors that I have found for PANDAS and he has seen many PANDAS children.