Who is a Doctor and what do you know about PANDAS?

[pmclaine]

Gun sites, in particular the rager section, are great places for medical advice........still there may be collective wisdom, I hope.

What experience does anyone have with PANDAS - Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections?

http://www.pandasnetwork.org/understanding-pandaspans/what-is-pandas/

Kind of wondering how an 11 year old kid that is outgoing and enjoys school after his 4th bout of Strep this year becomes completely anxious about going to school and wont leave the side of a parent or family member.

Its about a four week total change in personality, from being the skier that wouldn't let his sister beat him down the hill to now complaining "Im not like her" as she blows ahead in a crouch.

Sucky thing was the timing. Last week we had tonsils/adenoids removed scheduled in response to the third bout of strep this year. That should have put a stop to the recurring infections.

Than the week before the tonsillectomy he woke up on Monday complaining of a stomach ache so he didn't go to school. No school again Tuesday and that Wednesday we took him to the pediatrician and sure enough Strep case 4. Amoxicillin knocked it down than tonsils were removed the following Tuesday but he hasn't been to school in three weeks now and that despite me spending all day yesterday and most of today at school with him but he wont leave my side nor go to class at all. Yet when he sees friends in the hall he seems to be friendly with them. Will even leave side of family member and play as long as family member remains in sight. During Feb vacation he was getting up and being gone for the day only coming home when called.

We thought maybe it might be a reaction to the news events but his attention span for that shit in the past does not make that likely.

Weird as right now he is playing and socializing with a friend like all is well but he is at home in earshot. All his social media contacts are discussions about the latest NFL/NBA sports trades so I dont suspect bullying and know that he gets along with kids at school.

Went in today for blood check of strep antigens, thyroid function and Lyme disease.

Anyone with anything similar?

 

[tna9001]

PM sent

 

[demolitionman]

Damn rough time for your little guy and you. Prayers sent that he should bounce back and all this ends soon.

 

[mdmp5]

Did someone suggest this DDx to you, or did you hunt it down yourself? I don't have personal experience with it myself, but I do know that strep has all sorts of antigens that provoke responses in parts of the body like kidneys and heart. I had heard of the syndrome years ago, but haven't seen any cases. I think you've been vigilant enough to this point with the antibiotics. The symptoms do seem to coordinate with the syndrome, especially from the way you are describing it as acute. If I had to make a call, I would get him on IVIg and or plasmapheresis sooner than later. But hopefully the bloodwork will give you more of a definitive answer.

 

[TimeWillTell]

I had to do a lit search on this as my memory of it was pretty fuzzy. I'm young and haven't seen it first hand. Seems there isn't a great deal of data regarding true cause (general thought is autoimmune but there appears to be some controversy), treatment isn't well established due to minimal cases/trials. I'm interested to hear if any other docs on here have first hand experience and what their opinions are on the subject.

Mijp5 mentioned IVIG which a small trial showed improvement but another showed none. Data is so limited this is truly a clinical best judgement case.

 

[mdmp5]

I'm of the belief that if a treatment is of questionable efficacy, but has limited downside, go with it. Every effective treatment started as a question at one time.

 

[pmclaine]

I keep seeing "autoimmune" mentioned which is a clue.

The big desire to attack his strep experience with a tonsillectomy was based on the fact his younger sister went through a bunch of ear infections, tubes, adenoid removal and a number of perscriptions for amoxcicillin to treat her woes.......

At 5 she was diagnosed as Type 1 and Im suspicious that the meds kind of messed with a still developing immune system.

I didnt want him going on the Type 1 regimen and hoped to limit his exposure to antibiotics.

Now after what Im reading and seeing Id be pushing an IV bag full of them into his system right now if I could.

Unlike when I was a kid Drs are hesitant to remove tonsils and adenoids - makes sense they must be there for some reason and surgery is never a joke - but my advice (bad advice likely) is to remove those fuckers ASAP.

 

[TimeWillTell]

I'm of the belief that if a treatment is of questionable efficacy, but has limited downside, go with it. Every effective treatment started as a question at one time.

I generally agree with that. I've just seen several severe IVIG reactions in the last year that I'm a little more cautious with it now.

ETA: in all honesty I'm a little more cautious with every treatment now. Not just IVIG.

 

[pmclaine]

Did someone suggest this DDx to you, or did you hunt it down yourself?

Kind of hunted it down our selves and have asked the pediatrician to entertain us.

Thing is we also hunted down my daughters Type 1 ourselves.

At her 5th year physical my wife mentioned to her (ex) pedeiatrician that my daughter cant get enough water to drink and has regressed to wetting the bed.

Doctor said it was nothing and after my wife mentioned it to me one too many times. I Google searched "child drinks a lot of water and wets bed".

Every return was about Type 1.

She was getting a blood test by 1300 hrs the next day, in Childrens Hospital by 1700 with blood glucose numbers in the 700s.

 

[vh20]

Wrong species for me to advise, but to the MDs, would a short course of corticosteroids be out of the question, assuming the infections are resolved and he's healed up from the Sx?

 

[mdmp5]

Steroids are typically useful for inflammation, which is actually implicated on the biomolecular scale for an almost endless number of disease processes. But i am unsure what it would do in this case, if the model is indeed correct. The proposed model of this syndrome, which still is questionable, is a systemic antibody production in response to a foreign antigen, in which the antibody attacks host tissue. This is seen in APSGN and rheumatic heart disease, both actually caused by strep infection. So the model is feasible, but not proven yet. Anyway, you want to either flush those antibodies from the system via plasmapheresis, or compete with them via IVIg infusion. The way I see it, steroids would be almost akin to putting ice on a contusion because it will just kind of slow things down in terms of the immune response.

As timewilltell pointed out, IVIg infusion is not devoid of possible side effects, but in a controlled environment, those fx can be managed without too much worry. I just think the benefit may outweigh the risk many fold in this case, but that is my opinion based on a general knowledge of medicine, and not specialized in ID, rheum, or immunology. I am open to criticism if anyone has a counterpoint.

 

[mdmp5]

I keep seeing "autoimmune" mentioned which is a clue.

The big desire to attack his strep experience with a tonsillectomy was based on the fact his younger sister went through a bunch of ear infections, tubes, adenoid removal and a number of perscriptions for amoxcicillin to treat her woes.......

At 5 she was diagnosed as Type 1 and Im suspicious that the meds kind of messed with a still developing immune system.

I didnt want him going on the Type 1 regimen and hoped to limit his exposure to antibiotics.

Now after what Im reading and seeing Id be pushing an IV bag full of them into his system right now if I could.

Unlike when I was a kid Drs are hesitant to remove tonsils and adenoids - makes sense they must be there for some reason and surgery is never a joke - but my advice (bad advice likely) is to remove those fuckers ASAP.

It's not the antibiotics that are implicated in causing type 1 diabetes, but yet another incompletely understood model of antibody production in response to possible viral antigens. Don't do this to yourself in second guessing your judgment as if you played a part in her developing the disease. Totally out of your hands, and you did the best you could.

 

[TimeWillTell]

I agree, steroids would be a bandaid. If you medically justify steroids that means you are banking on it being autoimmune. If that's the case, you might as well go straight to IVIG. I'd choose IVIG over plasmapheresis every time if no other contraindications.

 

[TimeWillTell]

It's not the antibiotics that are implicated in causing type 1 diabetes, but yet another incompletely understood model of antibody production in response to possible viral antigens. Don't do this to yourself in second guessing your judgment as if you played a part in her developing the disease. Totally out of your hands, and you did the best you could.

Agree with this pmclaine.

One of the hardest things for me as I started my career is that sometimes, no matter how perfect I was as a physician, bad things just happen. Hang in there, don't blame yourself.

 

[pmclaine]

It's not the antibiotics that are implicated in causing type 1 diabetes, but yet another incompletely understood model of antibody production in response to possible viral antigens. Don't do this to yourself in second guessing your judgment as if you played a part in her developing the disease. Totally out of your hands, and you did the best you could.

The family functions without guilt and the daughter is tougher and better adjusted than you would think for all the shit she has to deal with other kids do not.

Tell you what if there was ever a day and age to have to deal with diabetes its right now as technology is rapidly advancing on its requirements.

and appreciate all the answers here.

this isnt a peer review paper.

just someone with no knowledge looking for good questions to ask.

I think the blood test results from today will be telling and Im happy our doc orderd them up without any "oh its nothing" type talk.

My wife knows these kids. when she says something is wrong something is wrong. Im the one that would let them go a week with a broken arm saying "Its nothing"

 

[mdmp5]

Please post when you get the labs back

 

[QuickNDirty]

This thread is really messing with my head. I don't know anything about that stuff and had never heard of PANDAS til now. I dunno what I'd do if my boy did a 180 in personality out of the blue.

Might very well ask on SH now, though. No telling what all kinds of shit people are into here.

We've got y'all in our prayers tonight, pmclaine.

 

[vh20]

mijp5/TWT : I am not familiar with the model of this syndrome, but I had guessed that, since there was an autoimmune response to an infection being proposed, that inflammation would be a likely component in the neuro symptomology. In our field, steroids, cyclosporine, and azathioprine are the immunosuppressive agents most commonly used, but the steroids help the most with the inflammation-induced symptoms. In other words, band-aid? Yes, but also perhaps the most likely to alleviate the symptoms quickly while a true fix is implemented (perhaps the immunoglobulins). That's why I was asking about the feasibility of a "short" course of steroids, not a long-term fix.

Having said all that, I know absolutely nothing about the syndrome, but was just wondering why neither of you mentioned steroids as an option in what would likely be a multi-modal Tx regimen (i.e. simply a professional curiosity).
Thanks

 

[mdmp5]

I actually was going to amend my original statement about the steroids being a possible adjunct to immunoglobulin therapy with probably little downside. As a stand alone, I would say it is a futile effort, but it may have some synergistic benefit. This is conjecture of course, but it's probably ok.

 

[TimeWillTell]

mijp5/TWT : I am not familiar with the model of this syndrome, but I had guessed that, since there was an autoimmune response to an infection being proposed, that inflammation would be a likely component in the neuro symptomology. In our field, steroids, cyclosporine, and azathioprine are the immunosuppressive agents most commonly used, but the steroids help the most with the inflammation-induced symptoms. In other words, band-aid? Yes, but also perhaps the most likely to alleviate the symptoms quickly while a true fix is implemented (perhaps the immunoglobulins). That's why I was asking about the feasibility of a "short" course of steroids, not a long-term fix.

Having said all that, I know absolutely nothing about the syndrome, but was just wondering why neither of you mentioned steroids as an option in what would likely be a multi-modal Tx regimen (i.e. simply a professional curiosity).
Thanks

Sorry didn't mean to make it sound useless. I think we both just jumped to the "big gun." Definitely nothing wrong with it and probably would be good as a bridge to IVIG if the kiddo had to be transported to somewhere since not every place will do IVIG on a kid.

 

[vh20]

Thanks, boys. I was just curious.

 

[Sean the Nailer]

I gotta commend you gentlemen, for this viable and valuable discourse. A number of questions have been posed, a number of suggestions have been tabled, and even some "differing of opinions". And yet, there has been no calls for a moderator, no 'jumping on the bandwagon', no 'beating each other with chairs, tv-trays, or pizza's'... and especially no calls to moderators inciting bans.

I'm not a doctor. I don't play one on TV. But while the medical stuff is interesting simply on an academic scale, it is the outcome and wellbeing of this little guy of which is the utmost importance.

I, and I am sure others too, am really looking forward to hearing progress reports. Thank you.

 

[TimeWillTell]

I gotta commend you gentlemen, for this viable and valuable discourse. A number of questions have been posed, a number of suggestions have been tabled, and even some "differing of opinions". And yet, there has been no calls for a moderator, no 'jumping on the bandwagon', no 'beating each other with chairs, tv-trays, or pizza's'... and especially no calls to moderators inciting bans.

I'm not a doctor. I don't play one on TV. But while the medical stuff is interesting simply on an academic scale, it is the outcome and wellbeing of this little guy of which is the utmost importance.

I, and I am sure others too, am really looking forward to hearing progress reports. Thank you.

There's always a lot of discussion and even disagreement in medicine. It's, in my opinion, for the benefit of the patient that we have these conversations and weigh alternative views.

 

[pmclaine]

I appreciate the collective knowledge.

I am aware of the concern expressed by "it has to be true, it was on the internet"

Still I have recognized some good character here and I'll continue to believe I will continue to do so even with the slightest skepticism that my advisor might be a guy wearing a wife beater and underwear in Moms basement.

 

[pmclaine]

As an aside....

Why even think a highly medically trained person would be on the Hide?

I had a great encounter at my local club.

A new shooter next to me with some high quality gear. Dont remember exactly what he had but it was something like a nice custom 700 clone receiver in an AI chassis with a top end Nightforce.

We talked shooting and background. Ends up he is the head of a heart surgery department in one of Bostons bigger hospitals.

I though that really neat though not surprising why wouldn't he, working so precisely, be interested in precision shooting.

Sad comment he made to me was the objection of his co-workers to his hobby. He comes from overseas and one comment made to him was "Oh no, you cant do that. Only low class people in the US do that sort of thing". What an awful comment.

I couldn't think of a better way for a guy that works under a lot of pressure to decompress. That is just my bias but looking at it subjectively everything about precision shooting is relaxing, repetition, discipline and calm control. It should be required for surgeons to shoot.

Continuing the story the bunch of us shooting were so welcoming to the new shooter that I think we got him flustered. About 20 minutes after he left we noted a spare gun case and asked around who's it was. Apparently the Doc forgot his case with gun after we all talked up the shooting. He had given me his card so I was able to leave a message that I had his gear safe and left info how to get in touch with me.

About 5 or 10 minutes after I had secured his rifle he pulled back up in a panic looking for it. We told him it was good, shit happens and made every effort not to make him feel small. Too bad some of his coworkers that serve with him in life or death decision making cant do same.

 

[TimeWillTell]

There's many many gun people where I'm at I'm medicine. Docs and nurses and administrative alike. But def those that look down on it. Probably a similar distribution to the rest of OK (where I'm at) which is likely more gun friendly than MA!

 

[mdmp5]

There are plenty of anti gunners in medicine, but there still are a few pretty good guys left. Pisses me off to no end when some middle easterner or indian comes to this country, takes a government subsidized residency position after not paying for med school, and then listening to these assholes berating guns and capitalism. My old roommate is in psych, and one of his attendings, this indian bitch would habitually write patients up and report them to the "SAFE" act in NY, which prevents them from owning guns for 5 years. I almost lashed at a dickhead ortho surgeon in the middle of a case because he was talking about social justice and that we should be paying more taxes. Scumbag thinks he can say what he wants in his arena and nobody will check his ass. That was an exercise in restraint for me.

 

[pmclaine]

There are plenty of anti gunners in medicine, but there still are a few pretty good guys left. Pisses me off to no end when some middle easterner or indian comes to this country, takes a government subsidized residency position after not paying for med school, and then listening to these assholes berating guns and capitalism. My old roommate is in psych, and one of his attendings, this indian bitch would habitually write patients up and report them to the "SAFE" act in NY, which prevents them from owning guns for 5 years. I almost lashed at a dickhead ortho surgeon in the middle of a case because he was talking about social justice and that we should be paying more taxes. Scumbag thinks he can say what he wants in his arena and nobody will check his ass. That was an exercise in restraint for me.

If there is hope in my story the heart surgeon I was speaking with is Egyptian.

Yes any surgeon that uses his position to take away civil liberties is in violation of primum non nocere.

 

[mdmp5]

The surgeon I was talking about was egyptian too. Kinda funny. However, using Egypt as an example, there are a small group of coptic christians whom seem to see eye to eye with conservative ideals. I didn't mean to imply that all the foreigners are like this. As a matter of fact, usually people who have come from some rough countries tend to be quite level headed. Good friend of mine years ago is libyan and bought a bunch of guns when he got his green card or citizenship

 

[W54/XM-388]

She was getting a blood test by 1300 hrs the next day, in Childrens Hospital by 1700 with blood glucose numbers in the 700s.

Kind of crazy high numbers, I've heard of folks getting into the 800 and 900 range, but usually they were waking up in the hospital after passing out.

Even a 300 number will get you a fair bit of attention at the hospital.

 

[pmclaine]

The surgeon I was talking about was egyptian too. Kinda funny. However, using Egypt as an example, there are a small group of coptic christians whom seem to see eye to eye with conservative ideals. I didn't mean to imply that all the foreigners are like this. As a matter of fact, usually people who have come from some rough countries tend to be quite level headed. Good friend of mine years ago is libyan and bought a bunch of guns when he got his green card or citizenship

Sadly a lot of people that come from other countries with the desire to assimilate and become Americans value their new found Freedoms more than native born that take their good fortune of birth for granted.

I suppose superficially I'd be looked on as an anti immigrant, foreignphobe by the left because I am conservative.

But that is false.

I welcome motivated immigrants that want the melting pot and to support the Constitution and to exercise their rights....

....while in truth it's the liberals who only value immigrants for their ability to enslave them as a dependent population.

Coptic Christians have it hard. Al-Sisi is deserving of our support. Screw the Muslim Brotherhood.

 

[pmclaine]

Kind of crazy high numbers, I've heard of folks getting into the 800 and 900 range, but usually they were waking up in the hospital after passing out.

Even a 300 number will get you a fair bit of attention at the hospital.

Yes the numbers were that high.

We suspect my daughters pancreas had been failing for a number of months prior.

She started to lose a little weight but she was also growing so we thought she was "bean poling" out. The weight loss didnt concern us.

She probably just adjusted to feeling like shit and didnt realize how bad she felt.

When the pediatrician called, in tears, she was ready to dispatch an ambulance.

I looked at my daughter who was playing and seemd none the worse for wear and I didnt understand the situation.

Sure I understood that diabetes was going to change our lives but I didnt understand at the instant how much danger she was in.

I told the pediatrician I would drive her in, about 10 miles, rather than alarm my daughter.

My wife called a few minutes later, in tears rightfully so after getting the Drs message, and I told her it was important we keep our shit together because Shelber had no idea at present and wouldnt be cool with us being a mess.

Anyway 4-5 days of sleeping on a shitty fold out lounge chair in a hospital room later we had entered the world of Type 1 diabetes management.

I think kids systems manage these swings better than an adult would.

We try to keep her on a flat line with her CGM but variables we cant quantify - emotions, hormones, excitement - often find us behind the curve in administering insulin. Sure if we can count calories thats one thing but how do you dose for excitement until you see how it affects. Despite our best efforts she will experience highs and lows but does not seem to show an outward appearance either way. Its not good to have swings and we fight it but her resilience amazes me as she will be in numbers that I think would be an issue for an adult. Its a fact it happens despite how closely we monitor.

 

[mdmp5]

Years back, an IM attending quizzed me and asked, “would you rather have type 1 or 2 DM?” I said 2, because I thought I could control my destiny and reverse it. He told me I was a moron, because the fix for type 1 is simple. I had to think about it, and in many ways he was right. I think as time goes on, insulin will be easier to take as the tech improves

 

[W54/XM-388]

Years back, an IM attending quizzed me and asked, “would you rather have type 1 or 2 DM?” I said 2, because I thought I could control my destiny and reverse it. He told me I was a moron, because the fix for type 1 is simple. I had to think about it, and in many ways he was right. I think as time goes on, insulin will be easier to take as the tech improves

Unless you have an EMP event with no power for an extended period, or other collapse of society events.
Insulin is not easy to produce / store / distribute / live without in a non-modern setting.

 

[Sean the Nailer]

Continue to need/take insulin, or with diet-change and exercise no longer need ANY Diabetes medications. I know of a number of individuals whom are the latter.

And this attending thinks they're morons? Methinks I'm missing a memo.

 

[pmclaine]

Years back, an IM attending quizzed me and asked, “would you rather have type 1 or 2 DM?” I said 2, because I thought I could control my destiny and reverse it. He told me I was a moron, because the fix for type 1 is simple. I had to think about it, and in many ways he was right. I think as time goes on, insulin will be easier to take as the tech improves

Incredibly fast moving tech, slowed here only by our FDA.

Got to be truthful and wonder sometimes if its a case of "Hey dont kill the job".

But the people at Joslin are relentless with their research, education and treatment of diabetes so I think that they will gain ground.

 

[pmclaine]

Unless you have an EMP event with no power for an extended period, or other collapse of society events.
Insulin is not easy to produce / store / distribute / live without in a non-modern setting.

My most stark, concrete, reality.

If a tyrannical govt ever wanted to totally control a population ensure at least one member in each family is Type 1.

Only Lt Spears will be left to resist...

 

[mdmp5]

Unless you have an EMP event with no power for an extended period, or other collapse of society events.
Insulin is not easy to produce / store / distribute / live without in a non-modern setting.

And the average type 2 patient will be just as out of luck in that case

 

[mdmp5]

Continue to need/take insulin, or with diet-change and exercise no longer need ANY Diabetes medications. I know of a number of individuals whom are the latter.

And this attending thinks they're morons? Methinks I'm missing a memo.

His point was that the solution is much simpler with type 1. Those who seemingly conquer type 2 are very much the exception, not the rule. Living in this country doesn’t help either. It’s a great deal of inertia to overcome

 

[Craniotome]

I am a pediatric neurosurgeon and my shooting partner is a pediatric general surgeon and we also shoot with a pediatric cardiac surgeon. There is a small contingent of us.

More relevant to the discussion above is the treatment. I have seen improvement with IVIG for PANDAS. Below are a few references. I also have reached out to pediatric Neurology colleague I respect and will report back on their opinion, they have seen it more than I have.

https://www.ncbi.nlm.nih.gov/m/pubmed/29119300/?i=1&from=pandas after strep

https://www.ncbi.nlm.nih.gov/m/pubmed/28714753/?i=2&from=pandas after strep

 

[mdmp5]

Good info. You are definitely more of a resource on this topic than me. I am curious what your colleague has to say

 

[W54/XM-388]

And the average type 2 patient will be just as out of luck in that case

A lot depends on the individual, if for example you are just on a pill that is easily stockpiled, with eating the correct diet & not too much, you can probably be fine. Especially if you wind up not having access to modern highly sweet, highly carb intensive foods & have to eat more wild stuff / game stuff / stuff you grow.

 

[hankpac]

Not knowing your child's background info, and not having her and you in front of me to question deeper, and draw labs, and examine, and given only the intial description of his complaint (especially not wanting to go to school and a tummy ache), I think the first thing I would look into by asking him, is "Is someone pushing you around at school?" You said you at least questioned the possibility, and looked at his on-line history, but I think he at least deserves to be asked, giving him the opportunity to open up about it. Might be the simplest route to the actual problem. If it turns up negative, you haven't lost anything, and can dig deeper into other medical problems without delaying anything. Worth a try.

 

[pmclaine]

I am a pediatric neurosurgeon and my shooting partner is a pediatric general surgeon and we also shoot with a pediatric cardiac surgeon. There is a small contingent of us.

More relevant to the discussion above is the treatment. I have seen improvement with IVIG for PANDAS. Below are a few references. I also have reached out to pediatric Neurology colleague I respect and will report back on their opinion, they have seen it more than I have.

https://www.ncbi.nlm.nih.gov/m/pubmed/29119300/?i=1&from=pandas after strep

https://www.ncbi.nlm.nih.gov/m/pubmed/28714753/?i=2&from=pandas after strep

I am looking forward to the results of my sons blood test Monday perhaps naively with the idea that I am going to get some high revelation and everyone will say "Ah, Its PANDAS, IV stat. Your son will be all set in a week".

A. I'm guessing the diagnoses is not that clearly defined.
B. The broad medical community may not be as receptive to diagnosing it.
C. Insurance providers don't readily come coco with the cash stating PANDAS is a common coverage.

We have three scans being done thyroid, strep antigen and Lyme. Hoping they provide a clear path in someway.

My sons baseball coach tonight used the term PANDAS before I did when we were talking which was encouraging. It's good knowing from comments here and in PM that this is better known about than I was aware.

In the coaches knowledge of it it was his neighbors son that developed it. He got strep and his PANDAS was an OCD tic. The son would have to thump his chest at the door step some hundred times before he would walk through it to leave the house. He was treated and responged well.

The human body is amazing yet so frail at the same time.

 

[pmclaine]

Not knowing your child's background info, and not having her and you in front of me to question deeper, and draw labs, and examine, and given only the intial description of his complaint (especially not wanting to go to school and a tummy ache), I think the first thing I would look into by asking him, is "Is someone pushing you around at school?" You said you at least questioned the possibility, and looked at his on-line history, but I think he at least deserves to be asked, giving him the opportunity to open up about it. Might be the simplest route to the actual problem. If it turns up negative, you haven't lost anything, and can dig deeper into other medical problems without delaying anything. Worth a try.

Good point.

Bullying was one of the first avenues we considered as well the darker path of child predation.

Nothing's ruled out yet but reasonably good confidence we aren't there.

He played all day with a friend and just had a great baseball practice. He hit really well which boosted his confidence.

Asst coach had to keep telling him to stop looking behind while in the box though. That coach isn't aware of what's going on and he didn't realize he was looking at me to make sure I was still there.

 

[pmclaine]

I am a pediatric neurosurgeon and my shooting partner is a pediatric general surgeon and we also shoot with a pediatric cardiac surgeon. There is a small contingent of us.

More relevant to the discussion above is the treatment. I have seen improvement with IVIG for PANDAS. Below are a few references. I also have reached out to pediatric Neurology colleague I respect and will report back on their opinion, they have seen it more than I have.

https://www.ncbi.nlm.nih.gov/m/pubmed/29119300/?i=1&from=pandas after strep

https://www.ncbi.nlm.nih.gov/m/pubmed/28714753/?i=2&from=pandas after strep

Reading through these studies now.

This is hopeful...

CONCLUSIONS AND RELEVANCE: This PANDAS cohort whose neuropsychiatric symptoms did not respond sufficiently to antibiotics may have gained benefit from tonsillectomy.

I think he started having symptoms of this the week before he went in for his tonsillectomy and he was subject to a culture and found to be positive strep. So we have the surgical benefit taken care of now perhaps the antibiotic regimen will chase down the remaining persistent infection.

But than they put this in there also.....

CONCLUSION: Establishing the diagnosis of PANDAS is complicated because of underlying comorbidities in the field of neurology-psychiatry and the lack of a reliable biomarker. The positive outcome after TE as reported in case studies may be influenced by the postoperative medication and is not supported by the results of large-scale studies. In the light of the considerable postoperative morbidity rate, it appears wise to indicate TE for PANDAS only in supervised clinical studies.

Not buying it in our case. Im thinking that instead of multiple cases of strep throat since fall my son has had one case that persisted and flared on occasion causing him illness that resulted in us going to the pediatrician to have a positive culture determine another course of amoxicillin. The strep was "embedded" in his system between bouts though and the months of inflammation is resulting in the PANDAS symptoms.

Besides post op there was no required antibiotic. all my son received was pain meds - Tylenol and a oxycodone that we didnt use. If the post surgery meds have an effect I assume its limited to inflammation unless other places than MA Eye and Ear prescribe antibiotics typically.

So hopefully we have the "cover" for the persistent strep removed with his tonsils. Like to see them do a "necropsy" on those suckers and see what was in them.

Im understanding now my learned shooters conversation about the steroid and the antibiotic treatment.

Strep is the infection which needs to be treated by antibiotics but one of the damages it causes is inflammation which can be alleviated with steroids or NSAIDS. The inflammation in brain structures is likely the damage that is affecting his personality.

So ensure the infection is gone with antibiotics than treat the damage it caused by eliminating the swelling.

 

[pmclaine]

One other point my wife just reminded me of.

When our doctor spoke with us after the surgery to remove his tonsils/adenoids she was surprised by the amount of "pus" she exposed when she shaved/removed his adenoids.

 

[pmclaine]

and so much for HIPPA but as another aside.....

https://www.nimh.nih.gov/health/publications/pandas/index.shtml

My son reported a cut on his penis last Sunday.

He had been wearing jeans that day because he was helping me cut down a neighbors storm damaged tree and he doesn't usually wear zipper pants, most often some form of sweat pants which is the style for about every kid around here.

Anyway when he complained to his mom about the issue on his penis I immediately asked "Did you get it caught in your zipper today" and he was readily answering yes. I was thinking he is not used to zippers and had zipped too fast, Ive done it, first time was about his age and I did quite the dance in front of the toilet as I made that zipper go in reverse. I told him he was lucky that he had the length to clear his clothing and shrugged the small "cut" off.

He hasnt complained of it since.

I think I gave him a quick less embarrassing answer to an issue he didn't understand.

I mentioned the matter to his pediatrician but more along the path that should we be concerned about that injury and his behavior regards an adult predation?

Perhaps his issue is a Strep lesion of some sort? That pamphlet above has me thinking.

Apologies to anyone wondering about this shit being posted on a rifle free for all board.

Perhaps you will recognize something here that is going on around you that you cant explain. Responses we have received here have been helpful and rest assured this is not our only avenue. We are talking to med people in the traditional manner.

Id rather get some opinions from a more conservative view point as its likely Im going to have a very different world view in my local area.

 

[pmclaine]

1200 Wife snapped, had to leave work.

He mentioned joint pain despite not knowing whats going on and thats one symptom too many for her.

Headed to Childrens ER probably get told nothing will be done until blood results and we will be labeled the Munchausen parents.

 

[Sean the Nailer]

1200 Wife snapped, had to leave work.

He mentioned joint pain despite not knowing whats going on and thats one symptom too many for her.

Headed to Childrens ER probably get told nothing will be done until blood results and we will be labeled the Munchausen parents.

Keep on being great parents. It is the 'caring' that is so 'outside the norm' lately. Hold the doc's involved to task!