PANDAS

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

” 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.

BD: Rebbetzin Winnie lives in Eretz Yisroel.

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.

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.

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!

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.

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

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]”

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

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.”

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?

B”H

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

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.

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

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.

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.

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.