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EVIL PANDAS: A Scourge on the Brain

Children and adults with ADHD are said to have increased "comorbidity" of innumerable neuropsychiatric, learning, and psychosocial problems. I have written extensively about this elsewhere. In future posts I will explore several of these areas a piece at a time both for the sake of brevity and clarity. Today I wish to look at the neuropsychiatric aspects. Read More

misappropriations of Darwin

I'm not going to say ''this all sounds Bipolar'' but You should know, I'm thinking it.

ADD is a brain disorder and ADHD (Which means Bipolar) is a disease.

Thanks, for allowing me to comment.

Reply

Well, I'm glad you read the posts but I think we need to agree to disagree respectfully about various things. JG

tonsillectomy

My son has been diagnosed with Pandas since ast year, however he probably showed mild tic behavior since the age of 5. He is now 8, he has a tics, anxiety, sleep difficulties, learning disabilities, and bedwetting. He is on antibiootics however they do not seem to be working anymore. He has always had very high titers for strep, but has only had one positive throat culture. We have a tonsilectomy pending for next month. Are you still seeing good long term results? I recently found out I am a strep carrier and I am currently on antibiotics. I am looking for any advice. I am still uncertain about the tonsellectomy.
Stacey

PANDAS

Dear Mr. Petropoulos,
My son is now completely cured of his symptoms. I am "only" a mother, but it seems to me your comment seems "stuck" in a fixed way of thinking. Here is my experience, and I am not the only one. I am part of a support group with 20 mothers of PANDAS children who are being helped with antibiotics. Here is how I see it: being diagnosed as having a bipolar condition (permanent) versus having PANDAS (temporary, if treated with antibiotics) are two different things. My son is NOT bipolar, but he does have PANDAS. Suddenly, at age 7, he got an symptomatic infection and his antibodies went up into his brain, attacking the basil ganglia. He started to act out, have tantrums, lost the ability to write or do math, refused to work in the classroom (largely as a result), and had trouble sleeping. After having had the blessing of having a learning therapist who was hip to PANDAS (unlike the stodgy and expensive "experts" we paid to tell us to just try extreme discipline or psychiatric drugs because they had no idea how to diagnose him), we moved forward with a tonsillectomy, and heavy antibiotics. And, voila! Our son is back. 100% back. We just have to make sure he does not come down with strep, and if he does, we give him antibiotics and he gets better. He has never reached the lows he reached before though, since his operation. Not even close. Furthermore, his throat swabs had all been negative, and no one could see any strep, but it was INSIDE his tonsils. They were full of it. Only the blood test provided the clue. Thank you so much Dr. Goodman, for being brave enough, and SMART enough, to have an open mind and step forward in the name of helping these patients who are being MISLABELED as being Bipolar or having ADHD. Baloney. Sometimes it's hidden strep. The medical community needs to wake up! How many children are suffering and on powerful and psychotropic medications because of those in the medical community who refuse to check for strep? Why not check it out? I would be willing to go the mat with anyone from the medical community who doubts our experience. Anyone. PANDAS (and the sometimes Bipolar looking results that appear) are due to the antibodies going up into the brain. Stop that, and you stop the reaction. Have you ever heard of Rheumatic Fever? Well, this is the Rheumatic Fever of the brain.
Thank you all for keeping an open mind! Hooray for Dr. Goodman!!

INVISIBLE STREP

Sorry, I meant to say that his symptoms were completely ASYMPTOMATIC. He never had any signs of strep. His pediatrician could not believe it when we found out his tonsils were full of strep. Totally hidden from sight and swabs. Yet, it was causing his behavioral and learning issues. He changed completely over the winter break in second grade from a top student and a really great kid to a child who was difficult and moody, who could not retain math facts and lost the ability to write, and who was sometimes very angry. Now he is wonderful again. Thank God our son is back, and we are so grateful to our learning therapist who was able to peg what was going on. Go figure.
Thank you all for reading this comment!

Tonsils

Kathleen -- we have been puzzling over our son's symptoms for 3 years. We too have had many throat cultures. They are positive when he has classic strep symptoms (sore throat, fever, etc.) but negative at other times when he exhibits what we feel are PANDAS symptoms alone (tics, sometimes OCD, moodiness). He improves while on a normal course of antibiotics for positive strep, but it always comes back. My question is: how did you & your practitioner arrive at the decision to remove the tonsils? Your reply would be appreciated so much. I am desperate to help my son.

Invisible Strep

Dear Beth,
I know, it seems like such a mystery. Here is the thing, strep hides deep deep deep in the recesses of the tonsils, and the antibiotics cannot get to it. So, while you are taking the antibiotics, they alleviate the strep, but it will always come back. In our family's experience, when you have that kind of pattern, you will likely need to remove the tonsils. The strep is so persistent! Our middle son, who is 8, has just had his tonsils removed. He had no outward symptoms at all (negative cultures), but his titers were consistently at 365 (max level was 200). When his tonsils were removed last Friday, even though they looked healthy on the outside, when they were cut open they were found to be full of pits and scarring. Our youngest (6) has no strep symptoms (negative throat culture), but his titers have been at over 550 for months, so he is having a tonsillectomy on Friday, and I bet we will find strep hidden inside his tonsils, just like with our other two boys.
It is so frustrating, because the boys appear to be healthy, but the strep is hiding inside, and we cannot get to it with antibiotics, so we have to remove the tonsils to try to get the strep out of their bodies.
The problem is, you cannot know WHERE the strep is hiding. ODDS ARE the strep is remaining in the tonsils, but there can be abscesses where it can hide out elsewhere in the body. There is no scan to find out definitively where it is. You just have to take out the tonsils and treat with antibiotics and hope you get it. Very primitive. I would guess that your child's strep is hiding in the tonsils because when you quit the antibiotics it returns to the throat.
I feel foolish for not having had our other two boys thoroughly examined (taken blood tests for strep) at the time I treated my oldest (tonsillectomy last October), because as he has been recovering from his PANDAS, he has been constantly exposed to some strep because my other two had it. WITHOUT ANY SYMPTOMS. We did not know. Arghhhhh. At least now I am on it. Everyone has been screened. We even treated the dog.
You can't know that there is strep inside the tonsils, but chances are, that is where you will find it lurking. That is the best answer I can give you. My ENT says you have to go with the odds, and then go to plan B if that does not work. It worked for our oldest, and we found the strep for our middle son, so we are doing the best we can here. Lots of antibiotics, too, before during and after, because when you remove the tonsils, the strep can be stirred up and spread throughout the body.
And, sadly, having tonsillectomies does not mean they will never come down with strep again. It just improves our odds, and it removes some nasty stuff that is hanging out and causing trouble.
Best,
Kathleen

Invisible

Invisible strep----question....my daughter had a sudden onset of tics about 3 years ago, after having some ocd for about a year and a half leading up to that tic explosion. we had thought she was just difficult. she is now 9. Still has tics, adhd type stuff, and is a general pain in the butt. Her titers have never been high. Even after a positive throat culture. Any input on this? I've been told some pandas kids don't get elevated titers. We were told to pull tonsils by pandas doc, even without repeated strep and without high titers, but we didn't. Any thoughts? We've heard of kids getting worse....

Pandas in young adults

My son developed ADD & terrible tics at 8 years old. The Doctors could never give us a diagnosis, they would say it just happens to boys with ADD. They prescribed him an anti-psychotic drug called Risperdahl. It didn't make the tics go away it just made him gain lots of weight. Then it was Prozac, even though he wasn't depressed they said that would make the tics go away. Never happened, we gave up on all meds. Now he is 23 years old and still suffers from tics. Some weeks he gets pretty bad flare ups. Just within the last year I heard about Pandas and he was diagnosed with it. Basically it has followed him into adulthood. Now we have become aware of the constant sore throats and colds he gets way too often. He always has a terrible tic flare up right before and part of the tic is vocal and comes from the throat area. We are thinking that reomoval of T&A with antibiotics could give him some relief. We live in Los Angeles, could anyone recommend a Doctor (ENT) who is educated on Pandas?

pandas

Leslie,
Were you able to have your sons tonsils removed. Our son is 22 and having this procedure done this month on the 21st.
www.caringbridge.org/visit/wilsonnanney

Tonsil Removal

Turns out it was not PANDAS but Lyme Disease. However, before when we thought it might be PANDAS we went to see an ENT and she said that it is a much more difficult operation in adults. She said in children its a pretty easy procedure. Anyhow, did your son end up doing the procedure? If so how did it go???

Yes, PANDAS can happen

Yes, PANDAS can happen without high titers. Even when my son had a positive strep culture test, he didn't have high titers -although maybe they were high (the first day of infection?) and we just didn't to the blood test on that day. He has always had the high DNA se B-antibodies. Get that checked out.

doctor list

Blood Tests

As Dr Goodman says, diagnosing PANDAS is tricky. It is a "whole package" type of diagnosis. PANDAS may or may not be triggered by strep. H1N1 flu and vaccine can trigger it, chicken pox, Lyme disease...they don't know. As far as blood tests go, we tested three ways for strep, ASO, Streptozyme, and the Anti D-Nase. (Also, Lyme and various Iggs and other tests.) For us, the results that came back ringing bells were the strep tests. Anti-D-Nase is really important for measuring the active infections. But, remember that some people won't show elevated anything, and yet they still have PANDAS. You just have to do your best on the testing to see if anything shows up. Negative results can be had, even though there are still problems. We had elevated everything with regards to strep, so we knew we had to deal with that. Now the boys are showing what looks like early Lyme so we are treating with Omnicef, but who knows? Other things can trigger a few elements within the Lyme tests.
We are just doing our best. Can you get to see Dr. Goodman? I hope there is someone else in your area if not!
Good luck! Kathleen

Blood Tests

Hello,
I read a post about PANDAS possibly coming from chicken pox or lyme disease. I was wondering if anyone can give me more information about this. My son has sensory integration disorder and exhibits signs of autism. He has always had some kind of movement disorder and recently has been doing really weird behavior. He likes to make weird sounds all the time and is just really difficult. I had him treated for lyme a few months ago and the doctor said his co-infections had cleared and took him off the meds. I think that his symptoms have gotton worse now. So I started to do some more research and I learned about PANDAS. I'm wondering if this can develop from chicken pox because when my son was 4 months old he got chicken pox and had a very high fever... I'm just wondering if this could have affecting him and started his issues? thanks any help would be great

Question about decision to remove tonsils

Kathleen - thank you so much for your comments here. We have been struggling with our son's condition of tics, some OCD, some moodiness, some attention issues for the last 3 years. He tests positive for strep only when he has "classic" strep symptoms. At those times, he goes on the normal antibiotic course of cephalexin and his PANDAS symptoms improve (but only for a few precious days). Otherwise the throat swabs are negative. How did you/your practitioner arrive at the decision to remove the tonsils? What type of a doc did you work with on your treatment plan?
Thanks in advance for the help.

Doctor List

Thank you

Yes, received both replies. Thank you so much for your insight. We will find a good ENT and try the other doctors for our state that I see on the list you posted.

It sounds like your whole family was screened using an ASO titers blood test - is that correct? I am curious because what I am reading here from Dr. Goodman is that the Anti-DNAase B is necessary for the PANDAS patient, but perhaps not as a screen for the rest of the family? Just trying to sort it all out so I know what to ask for.

Indebted,
Beth

Blood Tests

Dear Beth,
We had three blood tests for strep, ASO, Anti D-Nase, and Streptozyme. Also Lyme and Mycoplasma. The strep tests showed high titers, so we went ahead with the tonisillectomy. But, as Dr. Goodman states, the tests are not the end all and be all for your answers. Some people don't show any elevated levels, but they may still have strep. They are finding that Lyme, H1N1 flu and vaccine, and Chicken Pox can trigger PANDAS as well. Could you see Dr. Goodman? He seems to have a great handle on this. If not, I hope there is a doctor in your state.
Best of luck to you!
Kathleen

Hello- Just looking back over

Hello-
Just looking back over old posts, and wondered if you ever had your child's tonsils removed. My child's symptoms sound like yours, and we are still on the fence with pulling tonsils. Thanks!

Can you tell me what you mean

Can you tell me what you mean by "we found out his tonsils were full of strep." How did you do that?
Thanks!

Pus

Virtually every pt to undergo tonsillectomy has had them full of pus, abcesses and stones. Even the small, smooth ones that others say are benign. The bacterium can be identified under a microscope and by culture of the pus and tissues. Often strep, but we've found the other bacteria noted as sell. Dr. G

What to do after the tonsillectomy?

Hi,
Like you my daughter started getting PANDAS after strep at about the age of 7.She is now 9. I was lucky to have a pediatricain who knew about PANDAS and led us on the right course. It has been a learning process for both the doctor and us though.
My daughter continued to get strep monthly and the hardest part was that she didn't always show the usual symptoms. She started to feel as she would say "crazy" and feel overwhelmed in school. We kept treating with antibiotics, but as you know once she went off them the symtoms usually came back. Finally, we decided it was time for the tonsils to come out. Right before the surgery she was placed on low-dose of antibiotics. It seemed to be helping.
Now the tonsils are out. The doctor said they were pretty bad and we did the right thing. Now my question is...do I keep her on the antibiotics and for how long??? (She was only on 4mg per day of amox-clav) I would gather even though the tonsil are out the PANDAS bacteria is still in her system somewhere. I would love to ask my doctor, but as I said she is learning right along with us. Any more detailed informantion would be greatly appreciated. I am so appreciative for people like yourself who do post what you have been through. I do not know anyone personally who child has this and it makes this much harder. Thannks, JM

After tonsillectomy care

We removed our son's T&A and then kept him on antibiotics for about 21 days. He is allergic to penicillin, so we gave him Azithromycin. He takes it prophylactically through the winter strep season as a protection. We have blood tests taken every three months, and we ensure that his titers and mychoplasma stay low. After kids have this, you need to be vigilant to make sure viruses are not there either, like hand, foot, and mouth. Lyme is something else to watch out for. The current best test for that is given by Advanced Labs, and it is expensive, but they are the only lab that grows a culture, and they have the best chance of finding out if Lyme is present. You seem to be on the right road, though. I would say that the T&A and the antibiotics are what saved our boy.
He takes 250 mg 3x week.

pandas

Kathleen, I too have a son 22 who is suffering from pandas or pans as they seem to call it in adults. My son has down syndrome. he has had strep many times and the problem is he tests negative and keeps telling me he has a hair in his throat. he starts become very nervous and clingy. he is an out going guy so this was a red flag for me. After5 strep test and no strep symptoms but his anxiety level high the test finally comes back positive. The symptoms of pans takes quite a while to stop (not totally) He was on antibiodics one dose a day for many months and everytime I attempted to take him off he would get the little blister pimples on his faca He did at one point have scarlet fever (with no fever) Just awful rash on face and 2 weeks later his hands and feet began peeling
I have had him to the ent the day before his test came back positive. the ent went down his throat with camera and said he looked fine. I just cant help think maybe its hidden inside the tonsils. How is your son doing since removing his tonsils?
Any input would be great. What doctors are you seeing?
thanks
Nancy

reply to David Petropoulos

Huh?? ADHD = Bipolar? Since when?

fascinating

This makes me wish that I had my tonsils out when I was a child. I don't think I ever had strep. I had tonsillitis a lot. I don't get sore throats too often now. I do have conditions that may benefit from this treatment.

reply

Check carefully for an expert in your locale. JG

.......

...I always appreciate the bloggers, and the opportunity to disagree.

Hope you're doing fine.

With certain disorders, for

With certain disorders, for example, ADHD is in not simply that an improved night's sleep, as a result of a reduction in snoring and potential sleep apnea, will reverse symptoms?

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Jory F. Goodman, M.D., is a practicing psychiatrist in Beverly Hills, with more than thirty years of clinical experience.

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