PANDAS

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  • #1457707

    WinnieThePooh
    Participant

    Despite my fondness for bears, this is not a thread about those cute black-and-white bamboo-eating creatures.
    It is about the somewhat controversial pediatric neuropsychiatric disorder that is caused by a strep infection- or rather, the body’s autoimmune reaction that follows strep.
    I am pretty sure my 10 yr old son has it, and has had it to varying degrees for years. His pediatrician is a bit skeptical, because he does not show the classic OCD symptoms, but is willing to go along with it. After discussing his symptoms and medical history with a Dr who is considered a PANDAS expert, she agreed it was PANDAS and recommended a treatment protocol. It involves weeks of strong antibiotics. My husband thinks it’s all nonsense and by giving him a medical reason for his behavior, I am enabling him and giving him an excuse not to control his aggression. Besides that he is very anti-medication.
    Meanwhile, I have been going crazy trying to deal with this child. Trying to keep him from hurting the other kids or breaking things when he gets into a rage. Trying to keep calm when dealing with him, and still have something left for the rest of the family (not too successful there). Trying to get him to go to school when he cries that he can’t make it through the day. And when he is home- trying to deal with him intercepting me at literally every moment demanding a hug. This shabbos was the worse it has been in the 2+ months since his current bout of symptoms started (I suspect it was the probiotic he started Fri afternoon that triggered a reaction). After 2 weeks of improvements on the antibiotics, when he was B”H almost his regular self again, he regressed and was totally out of control- the worst was when he was running around the house turning lights on and off. I spent most of shabbos holding him and keeping him safely away from everyone else. My husband had to handle everything else- from serving meals to giving the other kids the attention they deserved.
    Other than giving me a chance to vent, does anyone out there have any experience with PANDAS to give me support/direction?

    #1457750

    Joseph
    Participant

    Refuah Shelamo.

    #1457759

    Lightbrite
    Participant

    Thank you for sharing Winnie The Pooh! <3

    I’m sorry I don’t have any help for you in regards to PANDAS at this moment. I’m just learning about the disorder from you.

    It sounds like you have so much on your plate, and you are doing what you need to do to get the best care and future for your son. Figuring out a diagnosis is a trial-and-error process, and you’re doing amazing by being your son’s advocate here. I commend you for your persistence!

    Whether your son has PANDAS or not, the solution or treatment here is not easy or clearcut, but b’esrat Hashem this [turbulence] too shall pass and your son and family will become stronger and closer as you grow through this together.

    Keep being the Ema that your son needs right now.

    Sending you major chizzuk!!! <3 <3 <3

    #1457760

    Daniel45
    Participant

    Definitely sounds hundred percent like the symptoms of pandas.
    my daughter also has it and seems like we have been to the same expert who really does know what she is talking about.
    my daughter improved tremendously on the antibiotics
    You also have to keep in mind what other medications a psychiatrist may have given your son and what effects they have had especially if you are weaning him off them they are also natural supplements you can give to come your son available in the health stores

    #1457764

    TheGoq
    Participant

    ” My husband thinks it’s all nonsense and by him a medical reason for his behavior, I am enabling him and giving him an excuse not to control his aggression”

    Please trust your gut instincts and the specialists opinion your husband may be in denial about having a child with issues medical or otherwise.

    #1457801

    big deal
    Participant

    Just curious: was any blood work done? Is your specialist a female pediatrician in Brooklyn?

    #1457836

    Joseph
    Participant

    BD: Rebbetzin Winnie lives in Eretz Yisroel.

    #1457854

    A student in school with my boys had PANDAS and displayed some very bizarre behaviors that nobody would believe were not deliberate. Please ask your husband to go along with the round of medications to at least rule it out. It would be a finite time period and it may work. Hashem should grant you all koach and briut.

    #1457861

    Health
    Participant

    WtP -“involves weeks of strong antibiotics.”

    A freebie!
    Wrong! The treatment of PANDAS is antibiotics – only if the kid has an acute infection; eg. throat culture is positive.
    Otherwise treat with CBT and SSRI’s or other psychiatric medications.

    #1457871

    DaasYochid ☕
    Participant

    A freebie!

    And worth every penny!

    #1457873

    WinnieThePooh
    Participant

    Thanks for your support. I’m curious what you have to say Health, but as I write this your comment is still in moderation.
    BigDeal and Daniel, The Dr is the female pediatrician from Brooklyn’s daughter, the protocol is the same. I was nervous approaching her, since as my pediatrician pointed out, a big believer in PANDAS has a bias towards that diagnosis. But when he came down with his second round of strep in 2 months and his Dr treated it with the antibiotic of choice for PANDAS, and he markedly improved within a few days of starting treatment, I started to believe it was PANDAS and contacted the expert.
    We have not gone the psychiatric route yet- I was about to pursue that and was investigating names of Drs when he started the antibiotics and finally showed signs of improvement, so I have put that on hold.
    He has not had blood work now, but had extensive testing done last year when he also showed signs of PANDAS. Strep titers were high, but all that told us was that he had had a recent strep infection, which we knew. No signs of inflammation/autoimmune antibodies at that time. I was told that the more accurate test, the Cunningham panel is not available in E”Y.
    It is hard to trust instincts. I thought I was doing him good by giving him this probiotic- which is important when taking antibiotics, especially longer term, and is helpful in building up immunity, which I thought was good for him since he is always getting sick. Even consulted with the pharmacists, who is a bit of a naturalist. But after his reaction on shabbos, I did some more reading and found out that probiotics- especially those that contain benign strep strains like the one I bought, can trigger symptoms, and the last thing PANDAS kids need is something that boosts their immune system.
    Daniel, how long was your daughter on antibiotics? What supplements are good for PANDAS kids? I’m giving him vitamin D. Don’t want to bombard him with too much, because I am afraid he will balk at taking anything.

    #1457890

    golfer
    Participant

    Wishing your son Refuah Shleima!
    I hope your situation improves quickly!
    I’m sorry WinnieTP I have no personal experience and I’m not a doctor so I have no advice to offer.
    I do know people have had good results after being treated by the md in BP that you are probably in contact with.
    (I’m not in favor of Health’s advice. I know you’re in contact with educated experienced professionals so I don’t want to bother you with my opinions which are based more on anecdotal evidence. I have wondered in the past if Health has ever shared what his/her credentials are. )

    #1457892

    concerrned mom
    Participant

    I know both pediatricians -the daughter from before she moved to eretz yisroel-a real sweetie. They definitely have enuf medical knowledge and reports to back them.Pray that she be the right shaliach to help you.two points I want to make 1- does ur husband admit to seeing improvement both when he was in meds for the last infection and now till u started the probiotic? Hopefully he will as u continue the treatment and he will come in board with u which just makes it easier for u
    2-Ive heard that sometimes you still need a behavioral specialist or therapist because the child has made his behavior habit but much easier to treat once their pandas is under control.so first finish the meds then discuss with this wonderful doctor any continued treatment that might be necessary.
    Refua shleima.and remember ultimately everything is in power of Healer of all healers so direct ur prayers to Him.

    #1457960

    Health
    Participant

    DY -“And worth every penny!”

    Are you one of these guys/gals when your kids’ ear hurts you run to your local Health Nut?!?

    #1457970

    Health
    Participant

    WtP – What didn’t you understand? The latest treatment for PANDAS is what I posted!
    Although there are some practioners that aren’t up on the latest.
    Only treat with antibiotics – if there is an acute infection!

    #1457990

    Uri22
    Participant

    Hi, I have some experience with this. The blood work should indicate whether there are strep titers and how high. This will confirm whether PANDAS is at play here. Antibiotics will get rid of the infection, but persistent symptoms might require IVIG treatment to bring the symptoms to an end. Let me know if you need more info on this.

    #1457986

    big deal
    Participant

    Oy, Health.

    Winnie: It’s very difficult to watch your child suffer while you feel helpless and unsure. Especially when that suffering causes negative behavior that is distruptive to family and social life. Hashem should give you the bina and the tools you need to support your child as s/he makes his way to a complete recovery, IY”H.

    I know your specialist and her mother very well and can assure you that you are in competent hands. While your own pediatrician raises valid points, you need to understand that PANDAS and psychiatric disorders are each a subject to study.

    I’ve seen several cases of pandas. Some with the associated tics and others with the psychological component. There was this one case I know about that was diagnosed as PANDAS by said doctor and was completely off mark. With proper treatment all cases of PANDAS I’ve observed were completely resolved. While some took a long time -like months to a year, others recovered with a regular antibiotic regimen.

    I’ll continue in another post. It’s getting lengthy.

    #1457989

    big deal
    Participant

    What is important to understand is that the OCD behavior is not easily recognized. People associate OCD with rituals that are performed over and over again. Actually, compulsions can often occur in a mental capacity and people with obsessive thoughts present with many psychiatric symptoms i.e., anxiety, depression,oppositional, impulsive, eating disorders etc. Oftentimes a child is terribly anxious and cannot express him/herself and consequently acts out for no apparent reason. They are frustrated. As much as they try they cannot quiet those ominous thoughts that are going round and round in their heads. And what’s more? A person cannot run from their own thoughts.

    Many times a child that has/had PANDAS has a tendency to it and any infection, be it viral or bacterial, not just strep, can trigger a reoccurrence. I can often predict such a child getting sick before actual physical symptoms based on their emotional behavior. Therefore, if it were my child, I would get hold of a good therapist that specializes in CBT or ERP to teach the child conditioning skills necessary to help them cope. It’s hard work but with siyata dishmaya there’s hope that psychiatric meds can be avoided altogether.

    I don’t know your child nor do I know if s/he has PANDAS or OCD. But from what you describe s/he’s suffering badly. The most helpful thing you can do is to try to understand him/her. Once you do, your halfway there. You can be proactive and avoid triggers to unwanted behavior until this all settles down thereby lessening the amount of discipline needed and lead to a better atmosphere at home.

    Most of all, refuah shleima bekarov. Make sure to take breaks when you can so that you can be strong for those that need you. Daven for guidance and Hatzlacha.

    #1457997

    WinnieThePooh
    Participant

    Health, I didn’t say I didn’t understand your post- I said I could not see it because it was still under moderation last time I was on here. As I mentioned, my son did have an acute infection- a positive throat culture, actually his second in 2 months and was put on the antibiotics for that. By the way, the antibiotics of choice – azithromycin- is believed to be effective not only because it kills the strep bacteria, but also because it has some neuro-protective effect as well, so it actually goes to the root of the problem- the autoimmune attack on the brain.
    The issue is how long to continue the antibiotics- the protocol I got from a practitioner who is up on the latest research- who actually is part of the latest research – is to continue until symptoms subside and then slowly taper the dose.
    There are those who are on low dose antibiotics as a prophylactic to prevent future strep infections. While I understand the feeling that you don’t want your child to ever go through this again, I also don’t want to destroy him with antibiotics either. B”H I don’t think his case was as severe as some of the cases I have been reading about to warrant such an approach.
    I was considering CBT, but the therapist told me he would not do treatment unless he had a clear-cut medical diagnosis. Now that he has one, B”H he is doing much better, so so far I have put therapy on hold to see how it plays out. It is definitely something I would consider though.

    #1458007

    WinnieThePooh
    Participant

    Concerned mom- re husband’s reaction. I am not sure he really sees what is going on- he’s not the one who is home and dealing with the issues. I don’t think he really hears what I am saying when I describe his behaviors, he tends to tune me out if he thinks I am kvetching about something. So when he does see him act out, he thinks he is doing it on purpose and that it is because I don’t know how to handle him, and that I should go for parenting classes. Now I admit I do not know how to handle him when he goes into one of his rages, I don’t think a run-of-the-mill parenting class is going to help. I now have a name of someone who is familiar with PANDAS, does CBT and can help me deal with it – something on the back-burner right now as I see how things progress.
    Anyway, he is also very anti-meds, and his suspicion about long-term use of antibiotics stems from a close relative of his who was treated that way for rheumatic fever and suffered bad side effects- so since PANDAS is associated with long-term antibiotics, he doesn’t want to hear it.

    #1458016

    Daniel45
    Participant

    I never heard that probiotics should be a problem. Why not ask the pediatrician.
    My daughter is going to take it at least 3 months. I dont see why you are not doing bloodwork. There may be many basic supplements missing like active folic acid and omega 3 (a good one) is always a good choice for everyone.
    Ask about Ultra Calm from nutri supreme that I have started giving my kids. Its valerian root based and seems to wotk. But first get give the antibiotics a real good chance.
    Of course food coloring and sugar, white flour are always recipes for hyper activity

    #1458058

    🍫Syag Lchochma
    Participant

    “Of course food coloring and sugar, white flour are always recipes for hyper activity ”

    Not meaning to derail but feel a need to clarify that those things are not always recipes for hyperactivity unless the child has a specific sensitivity that causes that reaction.

    #1458065

    Health
    Participant

    WtP – “The issue is how long to continue the antibiotics- the protocol I got from a practitioner who is up on the latest research- who actually is part of the latest research – is to continue until symptoms subside and then slowly taper the dose.”

    BALONEY!!!
    This is from Emedicine about Pharyngitis due to Strep.:
    “Circumstances dictating that a choice other than penicillin V should be used
    Compliance: Oral penicillin requires multiple daily doses and a 10-day course. In patients unlikely to adhere to this regimen, one dose of intramuscular benzathine penicillin provides a depot that releases medication over the course. Recent reports have supported the use of once-daily amoxicillin and verified its noninferiority to twice-daily penicillin [44] or twice-daily amoxicillin. [45] Azithromycin, cefdinir, and cefpodoxime may all be given in 5-day courses, although none of these medications should not be considered a first-line agent given their extended spectrum and risk for promoting antibiotic resistance. [1, 48, 49] Furthermore, although no differences in treatment outcomes have been found between macrolides and penicillin, children experienced more adverse events with macrolides. [47]
    Palatability: Some young children find oral penicillin unpalatable. Taste tests and many doctors’ experiences have shown amoxicillin to be much better tolerated. [50] Amoxicillin’s similar spectrum and low cost make it a reasonable substitute.

    Recurrence: Test of cure is not indicated when pharyngitis symptoms have resolved following treatment. In patients with recurrent symptoms, retreatment with an initial first-line agent (oral penicillin, benzathine penicillin, or a first-generation cephalosporin) is reasonable. Worth noting is the difficulty in differentiating between viral pharyngitis with GABHS carriage and actual GABHS pharyngitis. This becomes even more of an issue in patients with multiple recurrences. Between 5% and 15% of children are asymptomatic carriers during seasons when GABHS pharyngitis is most prevalent. [55] A positive test result during a time of wellness may indicate GABHS carriage. When multiple recurrences are believed to be due to GABHS infection, clindamycin or amoxicillin/clavulanic acid is indicated. [1]”

    #1458073

    DaasYochid ☕
    Participant

    Healrh, WTP is in touch with “a practitioner who is up on the latest research- who actually is part of the latest research”, and you insist on copy/pasting from a website?

    WTP, refuah sheleimah. May Hashem give you the strength to get through this.

    #1458143

    mexipal
    Participant

    Refuah Shelaima to your son.
    I would like to raise a few points:
    1) Aggression and tantrums aren’t symptoms of OCD. Do you notice anxieties, rumination, and other known OCD symptoms.
    2) It is wise to be wary of baalei shita, people who are quick to attribute any symptom to their pet diagnosis. I don’t know who this doctor is and she probably is very smart and well meaning. However, it’s wise to be cautious
    of something that’s not accepted by the wider medical community.
    3) CBT and ERP, though difficult, are well researched treatments. A good psychologist is needed and may be hard to find. However, they are known to be successful. Hatzlacha

    #1458124

    Health
    Participant

    WtP -“Anyway, he is also very anti-meds, and his suspicion about long-term use of antibiotics stems from a close relative of his who was treated that way for rheumatic fever and suffered bad side effects- so since PANDAS is associated with long-term antibiotics, he doesn’t want to hear it.”

    Just sometimes you should listen to your husband!

    #1458151

    Health
    Participant

    DY -“Healrh, WTP is in touch with “a practitioner who is up on the latest research- who actually is part of the latest research”, and you insist on copy/pasting from a website?”

    Your post is laughable if not for the issue of life & death!
    I’m sorry that you never heard of Emedicine from Medscape.
    Here’s from the actual guys who made decisions about PANDAS:
    From the PANS/PANDAS Consortium:
    “Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome: Part III—Treatment and Protocol
    Throat swab
    A throat swab for GAS is recommended during the initial diagnostic evaluation for PANS, particularly if the child is not already receiving antistreptococcal treatment. Testing for GAS is recommended regardless of the presence of clinical pharyngitis or the severity of neuropsychiatric symptoms at that time. A throat swab should also be performed both during exacerbations of neuropsychiatric symptoms and during episodes of pharyngitis, particularly in children not receiving an appropriate antibiotic, or if adherence to the prophylactic regimen is in doubt. Perineal and other extra-oral sites should be inspected routinely, with cultures obtained from suspected infection sites.
    The throat of asymptomatic family members and other intimate contacts should also be swabbed, if possible, at the time of initial diagnosis, and at any time they have pharyngitis symptoms. When patients have PANS exacerbations, untreated close contacts should be questioned about symptoms of pharyngitis or dermatitis, and cultured and treated if positive.
    Management of Streptococcal Infections in PANDAS
    Primary antimicrobial treatment of acute streptococcal infections
    Primary antimicrobial treatment for all patients with pharyngeal GAS is indicated, with oral or intramuscular penicillin as a first choice (Gerber et al. 2009). In current practice, amoxicillin is often used in suspension form for younger children due to its enhanced palatability (American Academy of Pediatrics 2015a). Injectable antibiotic therapy is considered the most reliable, although in practice it is usually reserved for children failing or unable to accept oral therapy. The objective of antimicrobial therapy of acute streptococcal infection is to eradicate the current GAS infection to minimize non-suppurative sequelae such as rheumatic fever (Shulman et al. 2012).
    For children allergic to, or intolerant of, penicillin, cephalexin, cefadroxil, clindamycin, azithromycin, or clarithromycin are recommended according to the IDSA 2012 guideline for the treatment of acute GAS pharyngitis (Shulman et al. 2012) (Table 2). Children with persistent or rapidly relapsing pharyngitis may also be treated with these agents, which may be more effective clinically than penicillin or amoxicillin (Casey et al. 2008).
    Table 2. Antimicrobial Treatment of Acute Streptococcal Pharyngitis
    The use of azithromycin as an alternative for the treatment of pharyngeal GAS infection may be less efficacious, due to regional GAS resistance rates as high as 5%–10% or more (Silva-Costa et al. 2015) with an associated potential for the development of sequelae (Logan et al. 2012). Theoretical advantages of azithromycin include its ease of administration, its activity against most Mycoplasma pneumoniae, and its potential immunomodulatory (Obregon et al. 2012) activities. Disadvantages include its potential to promote azithromycin resistance of both GAS and M. pneumoniae. The U.S. Food and Drug Administration recommends that it be used with caution in patients with a prolonged QT interval on the electrocardiogram, and may be contraindicated in patients receiving medications that prolong the QT interval, which includes some of the selective serotonin receptor inhibitors (SSRIs), as well as anti-psychotic medications and other psychoactive drugs.
    The use of oral clindamycin suspension may be problematic in children due to its unfavorable taste. Recent data suggest that clindamycin resistance may also be emerging, albeit at a lower frequency than azithromycin, in North America and worldwide (Villaseñor-Sierra et al. 2012; O’Dwyer et al. 2013), notably appearing in localized outbreaks of specific GAS emm types (Smit et al. 2015). Also of concern, clindamycin appears to disturb the protective throat and fecal microbiome to a much greater and a more prolonged degree than other commonly used oral antimicrobial agents (Zaura et al. 2015).
    For children allergic or intolerant to the penicillins, the Consortium preference favors cephalexin (bid or tid) or cefadroxil (once daily), in the absence of immediate-type hypersensitivity to penicillin. Among patients with confirmed amoxicillin hypersensitivity, there is a particular cross-allergenicity with cefadroxil, which, unlike cephalexin, shares an identical R side chain with amoxicillin (Miranda et al. 1996; Sastre et al. 1996); cephalexin may, therefore, be preferred in this setting. Some investigators provide this initial treatment for 3 weeks, awaiting resolution of neuropsychiatric symptoms.
    Treatment of GAS in children with PANS or PANDAS
    With a new diagnosis of PANS, it has been our practice to provide an initial course of antimicrobial treatment for acute streptococcal infection as described earlier, regardless of whether or not GAS is identified at the time of diagnosis, similar to recommendations for the initial management of rheumatic fever (Gerber et al. 2009). Although data from controlled clinical trials are lacking, aggressive diagnosis and treatment of GAS infection seems prudent as a means of mitigating risk for neuronal injury. In practice, the majority of children with recent-onset PANDAS experience a reduction in neuropsychiatric symptoms within days or weeks after antimicrobial treatment active against acute GAS infection (Murphy and Pichichero 2002; Murphy et al. 2004; Snider et al. 2005; Falcini et al. 2013).
    Table 3. Management of Infection in PANDAS
    Secondary antimicrobial prophylaxis for children with PANDAS
    There is currently insufficient evidence to support long-term streptococcal prophylaxis for children with PANDAS. To this end, members of the Consortium commonly institute long-term streptococcal prophylaxis for the most severely affected children, and for those with multiple GAS-associated neuropsychiatric exacerbations. The rationale for using secondary prophylactic measures is to prevent recurrences of intolerable, debilitating symptoms, as well as to minimize the possible risk of long-term sequelae or chronic symptoms. Weighing these theoretical benefits against the known risks of long-term antibiotic administration requires a careful consideration of the patient’s history and clinical status. We believe that the decision to institute long-term antimicrobial prophylaxis may best be made in consultation with a pediatric infectious diseases specialist, or a member of the PANS/PANDAS Clinical Research Consortium. When secondary GAS prevention is chosen, the antimicrobial regimens should be based on guidelines developed for the prevention of rheumatic fever.”

    #1458225

    WinnieThePooh
    Participant

    Health, nothing you quoted contradicts what I have written here, or the advice given by the Dr, so I am not sure what we are arguing about. Your first post described a regular treatment protocol for strep throat, not PANDAS (which by the way is exactly what we did for my son’s first strep infection), and your second post about PANDAS basically just discussed the pros and cons of the various choices of antibiotics to use, and a cautionary approach to long-term prophylactic antibiotics (which as I have said I do not want to do in any case).

    Mexipal-thanks for your well-though out comments. I don’t see the signs of OCD, I’ve gone over the check-list of OCD symptoms in PANDAS kids and really don’t see them. Don’t see depression, change in appetite or food avoidance. I’ve questioned him about what he feels and he does not mention anything connected to anxiety or fears, he only talks about the rages and that he gets scared when he rages by something inside of him that he can’t control. The lack of OCD symptoms is why we at first avoided the diagnosis. But he had so many of the secondary symptoms, it is actually eerie reading about the symptoms- some things that I had never even connected to PANDAS. He showed signs of vocal tics- he made these strange trilling sound with his tongue, and would drive his siblings crazy repeating their names with silly comments and ditties. No cursing- B”H he does not know curse words, but would have these outburst when he would start shouting “so-and-so should die” etc. Extreme clinginess, constantly crying and moaning that he needs a hug. Uncontrollable rages, with a look in his eyes like he was possessed. Spinning, sometimes while holding objects like belts or broomsticks that he would flail around. Trouble concentrating in school, could not get through the whole day, especially complaining about math, which has always been a weak spot though. More infrequent, and came up after the other symptoms subsided- sensitivity to light, complaining of muscle pain in legs and weakness, difficulty walking.
    As I said in a previous post, I was nervous about going to a “PANDAholic” who might miss something else because of her bias. My pediatrician is also skeptical because the diagnosis is clinical, and the treatment is empiric, and it’s hard to know anything for sure, and treating with long-term antibiotics is not something to take lightly. For the 2 months he had symptoms, we hesitated concluding it was PANDAS and did not want to put him on antibiotics. But then he had another strep infection- which had to be treated. And to my surprise, his symptoms subsided almost right away, with a few blips here and there. That’s when I started to believe it was PANDAS, and turned to the specialist, with my pediatrician’s support.

    Daniel, thanks for the info. I wanted to get omega-3, but the pharmacy I was in only had it in syrup or these huge pills, neither of which I thought he would take. I am so nervous about introducing anything to him right now. I think I will wait til the current episode is behind us, IY’H and then look into overall changes to be made to improve his health. We have not done bloodwork now, my Dr has not though to do it, the PANDAS Dr thought we had enough info for the diagnosis and did not require further testing. We did extensive testing last year- the only deficiency he showed was vitamin D, folate was fine, as far as I remember. We have to remember that we are dealing with a child who is going through a lot, and testing in itself can be stressful, so unless it is really mandated, I don’t want to repeat them.

    #1458300

    big deal
    Participant

    WTP: OCD is not the only symptom of PANDAS. Some of what you’re describing are very classic symptoms; the tic, clinginess, weepiness… Rage is atypical. Could be his way of dealing with all this. Could be something else.

    Why is your doctor wary of the pandas diagnosis if his strep titers were high and he is responding to antibiotics?

    #1458544

    WinnieThePooh
    Participant

    Doctor is wary because of the empirical nature of the diagnosis and treatment, (e.g. treat with antibiotics, if there is a response, great, if not, treat longer…) and probably because he came of age before PANDAS was identified, and it’s taken some time for attitudes to change and controversies to become mainstream. But he is going along with it now, since the meds seem to be working, B”H.

    #1459032

    big deal
    Participant

    B”H

    #1459117

    Health
    Participant

    WtP -“By the way, the antibiotics of choice – azithromycin- is believed to be effective not only because it kills the strep bacteria, ”

    Maybe I didn’t understand your post. Is the kid on Azithromycin or not?

    #1459202

    WinnieThePooh
    Participant

    Health, yes.

    #1459203

    DrMamaBear
    Participant

    I apologize if any of my comments are repetitive since, admittedly, I skimmed some of the comments in my quasi-agitation…

    My husband and are I both in the health field, he being a psychiatrist, and we’ve had 4 kids with PANDAS and a 5th not officially diagnosed…having been submerged in this for over 11 years, with treatments ranging from episodic antibiotics, long term antibiotic prophylaxis, steroid bursts, alternative natural treatments, MULTIPLE IVIG treatments using varied protocols, and any of the above either alone or in conjunction with psychiatric medications to aid in symptom relief before the PANDAS protocol effected a refuah, participation in therapy, CBT, and tic disorder clinic offerings, consulting with all the top PANDAS personalities out there, including the talented one from BP whom was referenced in comments above..and currently considering plasmapheresis for the PANDA bear of mine historically most resistant to .treatment, , etc, etc, etc I feel qualified to add the following…
    Pandas kids are notorious for NOT FITTING INTO ANY RUBRIC!!! There is tremendous over,as of symptoms that are easily misdiagnosed as one of a sundry other emotional, developmental, or psychiatric disorders but for our purposes in this discussion what I would like to highlight is the following…

    1- The hallmark of PANDAS is SUDDEN ONSET of neuropsychiatric symptoms…
    2- symptoms wax and wane and are quickly swapped for other puzzling, out of nowhere seemingly disjointed or unconnected symptoms…lightbulb!
    3. Severe, personality changes are common…from one day to the next, as is sudden regression in math skills and handwriting…tell tale signs in many kids, as are severe, sudden separation anxiety, bed wetting, and /or restrictive eating to name only a few…
    4. It bears mentioning that lo aleinu trauma of any type should be ruled out before settling into a PANDAS diagnosis
    And far from lastly….5. At a certain point, ASO and anti DNase-B blood levels ( strep titers) are no longer the measuring stick for a PANDAS diagnosis or flare up….any exposure to infection or flu, or other illnesses can trigger a flare up and also, it is patently false that only current strep infection necessitates PANDAS treatment….folks, I CAN TELL YOU UNEQUIVOCALLY if a child in my kids’ class has so much as a cold….

    H’ should bring all these kids a quick refuah and their parents relief by restoring them to their healthy baselines!

    #1459204

    DrMamaBear
    Participant

    And BigDeal…Rage is NOT atypical!!! Quite the contrary!

    #1459207

    DrMamaBear
    Participant

    I apologize that is disjointed….in addition, not all kids have tics, not all have OCD, many have neither but a host of unrelated, seemingly random and sudden, often bizarre and puzzling behaviors with no known emotional cause….there can also be huge overlap…compulsive and/or complex tics (not just a head jerk but a series of movements involving steps and various body parts, for example sample) with a compulsive quality and or a compulsive ritual which is actually a complex tic…simply put, compulsive tics or ticy compulsions, as it were…

    #1459288

    WinnieThePooh
    Participant

    Dr MamaBear, from one bear to another, hugs, and may our cubs have a refua shleima. Your story makes mine seem like child’s play… How do/did you hold yourself together through all this?
    I have been wondering something when it comes to my child- while his symptoms were sudden onset, some of the symptoms are extremes of tendencies he has shown in the past- for example, he was always a clingy baby, could never be put down, and had sensory-seeking issues when he was younger. These were things that he outgrew, and now came back suddenly in full force, much more extreme. In all your experience- is there a predisposition to PANDAS- is a certain type of child more susceptible? Or certain symptoms more likely to come up because there is already a neurological wiring in that direction?

    #1459956

    PANDAS Dad
    Participant

    HI Winnie,

    The timing from you post is from Hashem. I decided this week that I want to start something to help families dealing with PANDAS/PANS. It has been a ride (to say the least) the past year and a half with my son who has PANDAS (started when he was 6).

    Edited – we cannot share your email, so sorry

    #1459645

    sariray
    Participant

    A few years ago I was told my son may have pandas and when I looked into it I was bothered by two issues: 1. I hate antibiotics , I think they are a over used medicine that should have been reserved for emergency use only. They alter the entire microbiome of the body in ways we cannot fully appreciate yet. Possibly for life. 2. Many doctors out there don’t even believe it exists, it seems one expert is behind this epidemic of pandas.
    If it existed it would be a very easy solution to years of pain and frustration for me.

    #1459947

    Health
    Participant

    WtP -“Health, yes.”
    OK, That’s what I thought. This isn’t a freebie anymore – find me a Shidduch.
    You are a hypochondriac. It does’t matter if it’s PANDAS or not!
    Btw, I feel bad for DrMamaBear, but you aren’t HER!
    From above -“initial first-line agent (oral penicillin, benzathine penicillin, or a first-generation cephalosporin) is reasonable. When multiple recurrences are believed to be due to GABHS infection, clindamycin or amoxicillin/clavulanic acid is indicated. [1]”
    In practice, the majority of children with recent-onset PANDAS experience a reduction in neuropsychiatric symptoms within days or weeks after antimicrobial treatment active against acute GAS infection”
    Azithromycin is NOT recommended!
    Also, all family members should be tested to see if they are carriers.

    #1459978

    PANDAS Dad
    Participant

    All,
    My 7 year old son has PANDAS. The past year and half have been a very tumultuous time in my families life. While some kids have a very mild impact, some kids (like mine) can have a much bigger impact.

    The timing for this post is quite eerie. I decided this week that I want to start helping other families that are dealing with this. (I asked Hashem yesterday for a sign that I should take on this endeavor and today I see this post) While I know I won’t be able to do everything on my list below, I want to start talking to families that have kids with PANDAS. I want to see if there is any way I can start helping them (even if just giving them information), I want to see what areas do ppl most need help in, I want to see if they are willing to connect and talk to other families that are going through a similar thing and you can even let me know if you want to help me in my endeavor. Lastly, I am just trying to get an idea of how many families have kids with PANDAS in our communities, so it can help when I go talk to people, that this is impacting many families.

    While there are many great Jewish organizations, There is a gap in getting help for families such as myself, since we do not “fit the requirement” for these organizations.

    I know families need help in areas such as
    1. Medical assistance
    -initial pre-screen to help families determine if child potentially has PANS/PANDAS, what labs their doctor should be checking, general info etc..
    -referrals to get people quickly into treating providers
    -help fight insurance companies when treatment gets declined
    2. Financial assistance
    -many times families can’t afford to go to PANDAS treating doctors due to cost or don’t do recommended treatment due to cost
    3. emotional assistance
    -linking families up with other families that have gone or going through this
    -support groups
    -Education/awareness (many times kids are just told they have a psychiatric issues and go on many psych meds, when perhaps a few weeks of antibiotics would of totally healed them.) Many people just don’t have the awareness and never heard of PANS or PANDAS
    -help with siblings/family since they are also being traumatized by this (big brother/big sister, maybe tickets to sports games etc.)
    4. School assistance
    -Help going through the IEP process and getting placed in a therapeutic school (may need advocates, lawyers etc..)

    Contact info is not allowed. Sorry

    #1460009

    flatbushantivaxxer
    Participant

    Pandas is very real and specifically auto immune OCD, is very real despite the medical establishment not wanting to admit that we have a problem. Auto immune disease can also be triggered by vaccination. Dr Yehudah Shoenfeld coined the phrase ASIA -Auto Immune Syndrome Induced by Adjuvant. Adjuvants are ingredients in vaccines that cause and amplify an inflammatory immune response to vaccine antigens. According to Shoenfeld about 10% of the population is genetically predisposed to developing auto immune disease from a vaccine trigger. While there are conventional medical treatments for Pandas/OCD, you might consider looking into non conventional treatments such as intravenous high dose vitamin C therapy, Liposomal vitamin C therapy, probiotic therapy and the like.

    #1460010

    PANDAS Dad
    Participant

    Don’t worry so much about the Cunningham panel. Most will not treat based off of that. What it may do is help with insurance when you get denials, if something came up on the test.

    So don’t listen to anyone who tells you PANDAS is bogus. It’s as real as it gets. there are some kids who get marked improvement just from antibiotics alone (hard to say it was something else, when hallucinations, rages, anxiety, etc goes away after antibiotics if it was a psych issue it wouldn’t disappear so quick). In any case, the path/impact is different for each kid and treatment varies by provider. Each have their own antibiotics that they prefer to use. Some recommend Tonsil and adenoidectomy and some don’t. Many do steroid bursts, IVIG and plasmaphersis. (I have gone though all with my son). Some then go on to an immunosuppressant if that above doesn’t work.

    Many families will tell you diet and homeopath has helped them tremendously, we did not try this route (so can’t tell you if it works or not)

    Since I have gone though a lot of this, I tried to list my email in the previous thread, but I guess the moderator won’t allow that.

    #1460171

    Health
    Participant

    PANDASDad – “Since I have gone though a lot of this”

    Which ones have you done?
    Have you done CBT and SSRI’s or other psychiatric medications?

    “Many do steroid bursts, IVIG and plasmaphersis. (I have gone though all with my son). Some then go on to an immunosuppressant if that above doesn’t ”

    It doesn’t sound like you’re a medical professional because you first say steroid bursts & then immunosuppressant. In my mind steroids are given as an immunosuppressant!

    #1460173

    WinnieThePooh
    Participant

    PANDASdad- when I started this thread I needed to vent, wasn’t sure there would actually be enough people in the CR who could actually help or even heard of PANDAS. Was wishing there was some sort of support group. It is so comforting that so many of you have come out to share your stories and advice, although at the same time, painful that others have gone through this, and seemingly much worse than we have had, I cringe to think about what may happen the next time my son gets strep or even something else, since each reaction seems to be worse than the previous one.

    #1460191

    WinnieThePooh
    Participant

    Health I know I should just ignore you, but I am quite offended that you call me a hypochondriac. My son- actually all of the family- has gone through so much these past few months, and also last year. I am wondering what is your threshold for sympathy- the number of years of suffering, the number of children affected? Would you tell someone with a broken arm they are a hypochondriac because they only broke one limb while other people have it much worse and have broken legs and arms? I admitted from the very start that B”H my son’s symptoms were not as bad as many of the cases I have heard about, and his treatment so far seems more straightforward, B”H. But I don’t know what the future will bring- will the inevitable next round of strep bring out worse? In case you haven’t noticed, I don’t usually start threads, and I did so now because I had a real need for support and understanding. Sorry you missed that point.
    The only reasonable part of your post was the advice to test everyone else. I actually already did that and 1 kid is a carrier. B”H we found that out before he could re-infect his brother.

    #1460204

    PANDAS Dad
    Participant

    Health-Correct, I am not a healthcare profession. I am a father of a PANDAS child that has seen multiple doctors and multiple different treatments over the past 1 1/2 years. Yes, we did try many meds. When I mentioned immunosuppressant, I was referring to something like rituximab and when I mentioned steroid bursts I was referring to something like Prednisone.

    #1460337

    Health
    Participant

    WtP – ” quite offended that you call me a hypochondriac”

    The reason is you should Trust in Hashem that the antibiotics will get rid of the PANDAS; if indeed it’s there. That’s the reason of my labeling.
    In my opinion, this case would benefit from CBT & at least SSRI’s!

    #1460354

    👑RebYidd23
    Participant

    Health, your healthcare degree doesn’t count if you don’t show it or at least specify it in some way. For all we know, you could be a veterinary psychiatrist.

    #1460472

    WinnieThePooh
    Participant

    Health, what does hypochondria have to do with having emuna in Hashem that the treatment will work?
    Also why would SSRIs be indicated if he does not show signs of depression or OCD? And why the rush to other meds if B”H he is responding to antibiotics? CBT is something I would like to pursue.

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