Thursday, August 21, 2008

PANDAS: Strep and Crazy Behavior

Long story longer, my NT 6-year old gets absolutely CRAZY every now and then -- easily frustrated, falling on the floor unable to deal with anything, difficulty with clothes (sensory and figuring out what to wear), oppositional, aggressive, etc.

When It Started . . .
This has been going on since Summer of 2006 when she went abroad with my in-laws for 5 weeks. At the end of the trip she apparently got some sort of illness and had terrible diarrhea for two weeks. She was 4 years old at the time. My mother-in-law reports that she was screaming at the top of her lungs at 3:00 in the morning and going "crazy" toward the end of the trip. When she came back home, I noticed a complete change in my daughter -- she was seriously crazy. I couldn't figure out what was going on; I even Googled "devil possession" because I seriously thought she was possessed. It was awful. Things would get good then bad; on and off.

Chronic Strep . . .
That winter (2006) she had strep about 5 or so times. She had MAJOR issues with aggression and oppositional behavior and sensory issues with clothes. We even went to a therapist who was well-versed in "The Explosive Child" approach/concept, but nothing really worked.

A Pattern . . .
Over the months I started noticing that almost every time she started acting CRAZY like that, we'd have a note from school the very next day that somebody at school had strep. It happened SO many times it was really weird. I started to KNOW when somebody had strep at school based on my daughter's behavior. I thought that maybe *I* was crazy and totally over-analyzing things.

PANDAS Information . . .
I heard about PANDAS on the GFCFKids Yahoo group. I looked into it but just saw info on OCD [obsessive compulsive disorder] and tics from NIH, and I couldn't call her symptoms really "OCD" in the way I know of OCD. Somebody on the board then said that tantruming and other behaviors are also part of PANDAS. And every time I mentioned my daughter's behaviors on the group, somebody would mention PANDAS.

The Pediatrician . . .
So I got ballsy and brought it up to her regular pediatrician at her 6-year checkup. I was afraid he would think I was nutso. But to my surprise, he told me that he was VERY familiar with PANDAS and that he actually thought his own daughter had had it when she was younger! I told him that my daughter seemed to get strep when somebody down the hall at school had it, AND that her behaviors seemed to go up and down in flux with her exposures to strep. He didn't think I was crazy. He actually agreed that it was possible. His suggestion was to see an ENT and to possibly have her tonsils removed. [I'm not really interested in tonsil removal, but I made an appointment and am going to hear what the ENT has to say...]

The Test . . .
One night, my daughter was acting "crazy" again. I told her, "Sweetie, I think you have strep again." But (still doubting myself) that seemed too weird and impossible so then I figured maybe she was just tired. Then the next morning before school, she was flopping around on the floor and crying about how she couldn't figure out what to wear. Nothing was right. It was a re-play of what we went through in winter 2006.

After school that day, I went to go pick her up. Guess what was in the cubby? A NOTE THAT SOMEBODY IN SCHOOL HAS STREP!!! I turned to her teacher and said, "I bet you anything my daughter has strep" and gave her a brief run-down on PANDAS.

Her Kindergarten graduation was the next week. So to be on the safe side (and to humor myself), I took her to the pediatrician after school. Her throat was not sore. She didn't have a fever. The ped (not our regular one) thought I was weird because the only symptoms she had was that she was acting "crazy" the previous night and that morning. But, sure enough, her throat swab was POSITIVE for strep.

I was absolutely astonished and spent the rest of the night telling myself how smart I was for FINALLY figuring out what is going on with this girl. It's PANDAS!

A Carrier?
I am now supposed to bring her in on a day when she is healthy (and has been healthy) and give her a throat swab to see if she has strep. If she tests positive for strep but has no symptoms, then the thought is that she is a carrier for strep.

I hope this post can help somebody else out there dealing with PANDAS -- it's weird stuff!

UPDATE: May 19, 2009

We did not get her tonsils removed (although ENT said she was a candidate for it). Her pediatrician tested her on a "healthy" day and she is NOT a carrier for strep.

I now give her 1 cap of Olive Leaf Extract per day. I wrote a note on her health form at school that I want to be notified whenever a classmate has strep. (She is now at public school and they don't send home notes like her pre-school/Kindergarten did.) When strep is in her class, I double her dose of Olive Leaf Extract.

I have removed and/or am rotating foods that she tested postive to on an IgG/IgE test from Alletess. I re-arranged my work schedule so that she can come home on the bus and be home as opposed to being in the after school care program. I believe this helps in terms of being less stressed out and hurried, and staying away from multiple kids with multiple germs.

I give her a high dose probiotic (50 billion CFUs) every night. I make sure that the probiotic does NOT have a strep strain in it (S. Thermophilus).

I believe that all of the above have helped her avoid PANDAS issues for the most part. I do not think she is "cured" of PANDAS, though.

I spoke with Dr. Susan Swedo (the one who discovered PANDAS at the National Institute of Health) at the Atlanta DAN! conference in April 2009. I asked her if it was possible that my daughter would have PANDAS flares when somebody else around her had strep, not necessarily from her own infection. She said yes, that is possible, because it's the exposure to strep (not necessarily an infection) that causes the antibody response.

I also told Dr. Swedo about parents who are reporting PANDAS flares from S. Thermophilus in probiotics and yogurt (including coconut yogurt). She said this was interesting and said it is possible that this is happening, and she thanked me for bringing this information to her attention. She said it was parents who told them about PANDAS issues in the first place, so she said they definitely see the value in listening to the parents and what they are seeing with their kids.

Resources
NIH FAQs on PANDAS: Click HERE
Susan Swedo PANDAS lecture at San Diego DAN conference, October 2008: Click HERE

19 comments:

End of my rope said...

OMG! It sounds like you are describing my daughter. However, I never noticed the correlations you have. She has tested positive for pandas but the doctor has told us there is not much we can do outside of a very long antibiotic treatment which he does not recommend. What kind of advice have you received? Also, any advise you can offer on how to deal with these "meltdowns" would be great. Thank you for making me feel not so crazy and alone in this!

PANDASBABY said...

My son was diagnosed with PANDAS last year . It took a solid eight monthes of antibiotics before I felt safe enogh to stop . And yes everytime he is exposed we can tell . He begins by acting whiney then the tantrums start.I hate this illness I don't know how you can protect them from strep without constant antibiotics and that's no good for them. I am now struggling with how to handle school .He has been in preschool and what am I going to do about Kindergarten . Any help would be appreciated ,Any experiences good or bad would be valued .I swear the only people who go crazier then the kids from PANDAS are the moms who have to deal with it and try to explain it .As for the carrier thing take those tonsils out . It helps .

PANDASBABY said...

My son was diagnosed last year with PANDAS . I this illness!After 8 monthes of antibiotics finally we only go back on them when there is a case of strep exposure.How do you protect from strep? its everywhere.Expose means he starts with whiney behavior then we move to the tantrums . Once we are there we check him even if we have no reprted cases and sure enough he has strep . I am tire of trying to explain this illness to people .The looks .He seems fine.I would value any advice about school from moms who have been through this . He starts Kindergatren next year and the preschool has been great . What do I do when he goes to Big school?As for the carrier status I would pull those tonsils out if you haven't .I know a mom whose child never had a reoccurance after she did.

PANDASBABY said...

The antibiotics were 100% neccessary for us . We found a doctor who had treated 9 other children sucessfully We had to leave our good old doctor who told me he "wasn't sure if these kids just weren't right to begin with or it did something to their brains but they were never really right after " NICE. The new Doc put him on Omnicef becuase she had read that it was better for treating strep than the pencillins . Also I gave him Omega 3 Gummies everyday to help heal anything this was doing to his brain . I don't know if that helps but I felt so powerless!We threw out all the toothbrushes and disinfected the whole house and everyone including the dog went on antibiotics strep seen and unseen. And we have done this everytime he has been exposed in the last year .Now I have heard some parents say that their children have never gotten it again. And we have had one doctoir tell us that he wonders if it is aspecific strain of strep which would be bliss. But I have only been going through this this year and it is still very new. He is better right now but I am constantly looking for the symptoms and always waiting for the other shoe to drop again.So all I can say is you will make it through this and my heart goes out to you and your daughter . You really can't disapline the meltdowns .In answer to your question. I try to make constant eye contact. We would tell him to fight the bad bacteria .That this was the bacteria not him and he was a hero (which is abig thing for little boys) for fighting against it.Also and I have never heard anything that says this but chocolate always triggered the tantrums.they happened without it but always happened with it .So no chocolate.

VABlavat said...

I was just looking for somewhere to start my own blog with my journals when I stumbled on this one. My son has contracted strep twice in the last month. I know they were two separate cases because of a negative test in between Both times he had symptoms of PANADAS and has been officially diagnosed with it from a Neurologist from Cincinnati Children's Hospital. Interestingly, his behaviors are different with each case. The first time, it was mostly OCD with aggression and ADHD sprinkled in. Now, the second time it is aggression and tantrums big time. Thankfully, most of the aggression is taken out on me and not his siblings.Now he is on a hunger strike. This time, the DR prescribed a steroid since he is considering it an extreme case. We are only on day 2 of 5 for that so I pray it works. He is a very good DR, highly recommended and is in a PANDAS research study. I'll let everyone know how the steroids work. He will also be off antibiotics on Thursday. He is missing school and speech therapy because of this.

mich said...

Love the blog. It is much needed. I have been dealing with PANDAS with my six year old for almost six years. We still can't get a Dr. to treat him successfully. He is on long term Omnicef but still gets PANDAS episodes with reinfection. So I wonder if the antibiotics really work. Azith seems to help if yu can gt a Dr. to prescribe it. We also have mood swings and meltdowns daily. He takes Ablify but it doesn't seem to help the emotional overreactions. Tomorrow we are going to child psychiatrist who supposedly deals with PANDAS. We have been through at least twelve Dr's already and gotten no follow through or any closer to a treatment. If anyone finds one please post it here. Was it Dr. Gilbert you saw and did he help you?

Anonymous said...

I do not know if you are aware of olive leaf extract and the benefits of it. I do know in the book I have from Woodland Publishing(they have great little medical books for only 4.00, that olive leaf extract was known to cure strep. It takes a high dose but even the Upjohn pharmaceutical company was interested in trying to make a synthetic form of it.They did not get the same results with a synthetic.It even kills mrsa! The version my family uses is GAIA. This takes longer than an antibiotic but taking it with bromelain also attacks the outer protein coating by dissolving it enough to kill the virus.I do 5 pills 3x per day for myself.I believe my husband is a strep carrier because everytime I kiss him I get a sore throat. He thinks I am nuts regarding this but thanks for the info that you can get tested for strep even though you are not showing any symptoms.Maybe that will prove what I have been saying once and for all.

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Tricia said...

Does anyone know how much OLE is effective for treating PANDAS?

Regina said...

We have recently had our 7 year old son diagnosed with PANDAS but are having trouble with a good treatment plan. I am wondering what others have done to treat and what doctors have been successfully treating this disorder. In an attempt to reduce our son's emotional meltdowns, we try to stay a step ahead and avoid triggers, make sure he gets plenty of sleep, make sure he eats before he gets hungry, don't wait until shortly before bedtime to tackle anything he doesn't like doing. So, we make sure he has a healthy snack before practicing piano and that all happens before dinner. I also have questions about how to handle school and exposure to strep at school. I would suggest that parents try school, handwashing, etc. and see how it goes. My son's teachers and administrators have been very understanding. I have considered homeschooling my son for an undetermined length of time if necessary to try to avoid strep, but will exhaust other avenues first. Would love to hear more talk on this subject.

Anonymous said...

Ditto, Ditto, Ditto! I have a 7 year old boy. In hindsight, he has had PANDAS for 2 or 3 years. He gets strep more and more each year. He missed 28 days last year from kindergarten. My son tends to be on the side of mildly OCD. Nothing that stunts him socially, but as his Mother I notice it. When he was younger it was changing clothes 5 or 6 times a day if a drop got on them. Now, he absolutely obsesses about various interests, typical 7 year old boy interests (sharks, cars, etc.) I mean OBSESS! I am an expert now on whether or not he has strep. He develops what looks like severely chapped lips, which are not cured or soothed by any lip ointment. He will develop small open sores around his mouth. The first time he had them, I thought he had cold sores. The doctor disagreed with me and said he thought it looked like he had burned his mouth on something. Now I know they are his symptoms of strep/PANDAS. He is such a sweet natured little boy, except when he develops strep. He is loaded with excessive amounts of energy & acts like one of those obnoxious, hyper active children. Along with that behavior, he can switch on a dime to having a terrible attitude and just being plain belligerent and bossy. Basically, impossible to deal with. It's pretty embarrassing in a store, because people have no idea that my little guy is not a spoiled, bratty, mean child & that he is actually completely being owned by PANDAS. I did forget to mention that he develops a severe tick due to the PANDAS. He opens his mouth by opening his bottom jaw (if that makes sense-imagine an exaggerated version of yawning to pop your ears). He does it repeatedly. I have seen people stare at him in public because he does it over and over. He can't help it and in fact does not realize he is even doing it. It all disappears after 10 days of antibiotics. Once again he is my helpful, sweet, hardworking little guy. Then 2 weeks later, I see it all creeping up again. We are going to see a ENT doctor in March. I know I am a carrier of strep. I have no idea if that has had any affect on him at all. Thank you for starting this forum!

Anonymous said...

Ditto, Ditto, Ditto! I have a 7 year old boy. In hindsight, he has had PANDAS for 2 or 3 years. He gets strep more and more each year. He missed 28 days last year from kindergarten. My son tends to be on the side of mildly OCD. Nothing that stunts him socially, but as his Mother I notice it. When he was younger it was changing clothes 5 or 6 times a day if a drop got on them. Now, he absolutely obsesses about various interests, typical 7 year old boy interests (sharks, cars, etc.) I mean OBSESS! I am an expert now on whether or not he has strep. He develops what looks like severely chapped lips, which are not cured or soothed by any lip ointment. He will develop small open sores around his mouth. The first time he had them, I thought he had cold sores. The doctor disagreed with me and said he thought it looked like he had burned his mouth on something. Now I know they are his symptoms of strep/PANDAS. He is such a sweet natured little boy, except when he develops strep. He is loaded with excessive amounts of energy & acts like one of those obnoxious, hyper active children. Along with that behavior, he can switch on a dime to having a terrible attitude and just being plain belligerent and bossy. Basically, impossible to deal with. It's pretty embarrassing in a store, because people have no idea that my little guy is not a spoiled, bratty, mean child & that he is actually completely being owned by PANDAS. I did forget to mention that he develops a severe tick due to the PANDAS. He opens his mouth by opening his bottom jaw (if that makes sense-imagine an exaggerated version of yawning to pop your ears). He does it repeatedly. I have seen people stare at him in public because he does it over and over. He can't help it and in fact does not realize he is even doing it. It all disappears after 10 days of antibiotics. Once again he is my helpful, sweet, hardworking little guy. Then 2 weeks later, I see it all creeping up again. We are going to see a ENT doctor in March. I know I am a carrier of strep. I have no idea if that has had any affect on him at all. Thank you for starting this forum!

Anonymous said...

I am glad all of you have taken time to write about this. I think this is what my son has. I will write more later. H.

Anonymous said...

We're in the middle of another PANDAS episode with my 6yo daughter. This has been going on for a couple of years that we know of but this time seems A LOT worse. I just checked the soy yogurt she's been eating and it does have S. Thermophilus. I wonder if that has exacerbated it this time? I am also wondering if anyone knows what nutrients/supplements we can give her to promote healing of the brain? We see the ENT on Monday...

Elizabeth said...

I am wondering if anyone has overcome PANDAS with high dose, 200 billion units a day, of probiotics. My nutritionist is recommending this for my 7 year old son along with a high dose of B-12.

Anonymous said...

When my now 12-year-old son was diagnosed with OCD at 6, I did a ton of research, trying to figure out why he'd developed it and how we could best treat it. I kept running up on the "PANDAS," and like many of the other children noted here, my son never displays a sore throat or any other classic strep syndromes, but somehow I wind up with strep a day or two after a note about infection has come home from his school! So I became convinced that he's a carrier. On at least 2 occasions that I could clearly identify, his OCD behaviors escalated severely simultaneously with my coming down with strep! He has been under the care of a child psychologist since the age of 6, and we added a psychiatrist to the mix at the age of 9, as well. Neither of them will sign off on PANDAS being a key component of the diagnosis or treatment, though they finally did humor me eventually and gave us a prescription for a strep test with my son's pediatrician. It came back negative, but I'm still not convinced there's nothing to it. His OCD also manifests in some of the other behaviors noted here; he's not just obsessive-compulsive when the OCD is raging (it tends to be cyclical, with or without the influence of strep). He also can have a hair-trigger, tantrums, crying jags, depression . . . a myriad of behaviors. At any rate, along with all the holistic responses some of you suggest here, I really encourage you to get your kids some cognitive behavioral therapy (CBT), as well. It's non-invasive, non-drug, and has proven extremely helpful with my son. It teaches him and us how best to deal with the OCD in situations where it interferes with his life, his school, etc. And it's a long-term answer that you can always count on and reach back into that tool-bag and pull out the "hammer" that maybe you haven't needed for 3 months, but you need it now! It can help you deal until the holistic meds and/or antibiotics can kick in, and it's there for you even when you can't protect your kid from all the germs at school, at the playground, on the ball field, etc.

Michelle O'Neil said...

Hey Tori!

I was googling info about PANDAS (my six year old mostly NT guy has it)and up you came.

Great post. Thank you!

Anonymous said...

Thanks for sharing! Saw this article this week on PANDAS sp am very glad that Pandas is getting in the news and should help us all!

http://mywaybusiness.com/strep-throat-may-be-cause-of-many-child-mental-illnesses/961/#comments

Mike

datagirl said...

I just discovered my 7-yr old son's PANDAS a few days ago...I am almost certain he has been battling it since 18 months old, despite common literature stating onset at 3+ years. His strep B antibodies were almost 2,000. No physical signs of strep. Thank goodness we found a DAN doctor. What may have been flares of tics usually went away or were misattributed to other factors. The biggest aspect affecting our lives (and in a BIG way) - they 0-60 rages at the slightest trigger. I first became aware of PANDAS from Kenneth Bock's book Healing the New Childhood Epidemics: Autism, ADHD, Allergies and Asthma. A girl described in their could have been my son. Three days later our first set of DAN doctor-ordered results came back - and I was not surprised to see the Strep antibody counts at all! RELIEVED we know what we are dealing with FINALLY. No wonder the ADHD meds seemed to work better in waves, and we have tried them all. My son is extremely hyperactive. Underneath it all, he is the most beautiful, calm, considerate boy. I had strep when he was 17 months old, and suspected he had it as well but his symptoms subsided without testing. He had constant ear infections from birth, and countless rounds of antibiotics to go with them, which never seemed to work well. Good luck to everyone, and EDUCATE everyone you can! Hopefully we can help others along the way!

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