Tonsillectomy for ADHD?

A new study in the journal Pediatrics suggests this common procedure may improve the condition of kids diagnosed with attention defecit/hyperactivity disorder (ADHD). I think it’s an excellent case of some true “alternative explanations” for the data.

Creationists often try to validate their position by saying that both they and mainstream scientists start from the same data, but that creationists use their “Bible glasses” to interpret it, while scientists view it through their “evolution glasses.” In other words, they’re not wrong–it’s just a different interpretation of the same data, and where you end up depends on your initial biases and worldview. Though this is bogus when it comes to creationism, there are indeed real debates in the literature, where two hypotheses may be similarly compelling.

Such is the example of the new Pediatrics paper. The study referenced is a sleep study–specifically, looking at children with obstructive sleep apnea (OSA), a disorder where the sufferers stop breathing in their sleep. This can happen hundreds of times a night, for up to a minute at a time in adults. In children, the disorder seems to be more mild, but can lead to behavior problems and cognitive impairment. One treatment for this disorder is adenotonsillectomy (AT)–removal of the adenoids and tonsils. This typically improves breathing and resolves the condition.

The authors of the new study decided to examine whether this procedure also affected behavior. They enrolled 78 kids between the ages of 5 and 13 who were scheduled for an adenotonsillectomy, along with 27 controls undergoing a variety of other surgical procedures (but not AT). Each subject was assessed at enrollment to determine behavior (including the diagnosis of ADHD), cognition, and the presence of sleep disorders. Initially, just over half of the AT group was found to have sleep apnea (OSA), compared to 4% of the controls (just one patient). At the one-year follow-up, OSA was reduced to 12% of the tonsillectomy group, and again, one patient in the control group. Similarly, 28% of the tonsillectomy subjects initially were diagnosed with ADHD, compared to 7% of the controls (2 subjects). At one-year follow-up, half of the ADHD-diagnosed kids in the tonsillectomy group no longer qualified for diagnosis, and the percent of ADHD-diagnosed subjects was not significantly different between the tonsillectomy group and the control group at the one year follow-up. Most interestingly, they note that both at baseline and follow-up, the frequency of ADHD diagnosis was identical among tonsillectomy subjects with and without sleep apnea. Minimal improvement in attention was associated with diminished sleep apnea.

So, what did they conclude from their data?

Severe improvement in our subjects after AT provides new suggestive evidence for a cause-and-effect relationship between sleep-disordered breathing (SDB)… and several adverse behavioral, cognitive, and mental health outcomes. However, our non-randomized study cannot prove cause and effect. Moreover, the poor correspondence between SDB measures and neurobehavioral outcomes…seems to run directly counter to expectations if SDB causes these morbidities.

(Emphasis mine)

What they totally neglected to even mention was an alternative reason that the kids improved when they had their tonsils removed. I’ve mentioned previously something called PANDAS: Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. PANDAS includes not only ADHD, but also other afflictions such as Tourette’s syndrome and obsessive-compulsive disorder (OCD). All three target the same area of the brain: the basal ganglia. This is the same portion afflicted in another disease triggered by streptococcal infection: Sydenham’s chorea, a manifestation of rheumatic fever. One study of Sydenham’s chorea patients, moreover, showed that approximately 70% of those questioned reported an episode of OCD-like behavior. Additionally, other studies have found significantly increased rates of rheumatic fever among the parents or grandparents of children who have been diagnosed with either Sydenham’s chorea or PANDAS. Thus, children in the PANDAS group may have inherited a susceptibility to post-streptococcal sequelae similar to that reported for children with Sydenham’s chorea. All of these lines of evidence point to a role for Strep pyogenes in the development of ADHD, OCD, and Tourette’s syndrome.

How then does the tonsillectomy play into this? Streptococcal infections can, of course, be treated with antibiotics–Streptococcus pyogenes even remains highly susceptible to that old workhorse, penicillin. But these bacteria can play hide and seek: they can survive for quite some time within our own cells, which antibiotics can’t penetrate, and where the bacteria remain protected from attack by our immune system. And the cells they typically hide in are located in the tonsils–so remove the tonsils, remove the reservoir of strep, disorder resolves–just as the authors of the Pediatrics study saw. Easy-peasy, right?

Of course, even in the population of children who’d had their tonsils removed, there were still kids who had ADHD a year later. Again, this is one thing that makes these types of conditions difficult to study, as I mentioned here. Strep may be one cause; sleep may be a contributing factor; and there may be other causes as well, separate from strep. This is an ongoing area of research, where many questions remain and as such, alternate interpretations of the data are justified. Keep an eye on this and watch how it’s resolved: via attempts at legislation and political wrangling to teach our MDs one side or another, or by spirited debate and scientific disagreements in the literature, and the accumulation of additional evidence to either support or refute one of the views. I’ll bet a bottle of single-malt scotch it’ll be the latter.

Reference
Chervin RD, et al. 2006. Sleep-Disordered Breathing, Behavior, and Cognition in Children Before and After Adenotonsillectomy. PEDIATRICS Vol. 117 No. 4 pp. e769-e778.

Image from http://www.adhd-schools.com/images/troubled.jpg

Comments

#1 Bob
April 12, 2006

My old doctor, who liked to perform minor surgeries himself during housecalls (1960) recommended tonsillectomy and fish oil. My parents later told me that my behavior did significantly improve! (diagnosed with ADHD in 1990, still taking Ritalin…)
#2 Norman Costa
April 12, 2006

Tara,

Being an adult with ADHD, I read your article with great ‘attention’. Your analysis struck a chord with me. Please let me explain. I was diagnosed 12 years ago at age 46. Ritalin has been a miracle drug for me. There is a significant ‘genetic’ component for ADHD on my father’s side and in siblings, cousins, and nephews and nieces, etc.

My father, still alive, has ADHD and it’s very big on the inattentive side. He had rheumatic fever and rheumatic heart as a consequence at age 17. No one in his family had AT surgery, and no one in our family.

About 15 years ago I was on antibiotics for 2+ weeks following a spinal operation. During this time (the 2 weeks on antibiotics), my ability to focus mentally and read great volumes of very dense, very abstract, highly intellectual content improved dramatically. Intellectually and emotionally it was one of the most satisfying periods of my life, albeit very short.

A couple of years later, I went through several extended periods of oral-antibiotics to treat Lyme disease. While on the antibiotics, I found that my ability to concentrate mentally, improved again. Later, after my ADHD diagnosis and taking Ritalin, I made the connection to improved mental functioning and concentration during the earlier treatments with antibiotics. I discussed this a couple of years ago with my primary care physicial, and he was inclined to regard it as an ideosyncratic response to the taking of the medication, rather than to the antibiotic properties of the drugs.

Does this have any meaning for you in light of your discussion of the article on AT surgery and ADHD?

Thanks.
#3 Tara
April 12, 2006

Hi Norman,

Such anecdotal evidence is one reason (among several others) researchers started looking for an infectious cause or co-factor for ADHD: parents reported similar “remissions” of their childrens’ disorders when on antibiotics. Indeed, some still dismiss the correlation as an effect of the antibiotics alone, and it’s sometimes difficult to tease out the effect antibiotics have–is it because they’re killing the microbe in question, or because of some other property? However, careful epidemiologic studies, and other ones investigating removal of tonsils, etc. show that resolution of symptoms frequently occur in the absence of antibiotic meds. Add that to the similar genetic susceptibilities between the PANDAS illnesses and Strep, and I think it builds a good case.
#4 Flea
April 12, 2006

Tara:

A few comments on an otherwise excellent article.

I noticed a major typo and an important omission in the paragraph from Chervin et al.. The full paragraph reads as follows (typo in bold, omission in italics).

“Clear improvement in our subjects after AT provides new suggestive evidence for a cause-and-effect relationship between SDB (at least as identified in the office by otolaryngologists) and several adverse behavioral, cognitive, and mental health outcomes. However, our nonrandomized study design cannot prove cause and effect. Moreover, the poor correspondence between SDB measures and neurobehavioral outcomes, at baseline and follow-up, seems to run directly counter to expectations if SDB causes these morbidities. The 1 exception, for daytime sleepiness, is surprising because most pediatric sleep specialists have considered hyperactivity and inattention to be more prominent than overt sleepiness in childhood SDB. However, the extent of improvement in sleepiness, by only 1 minute on average in the Multiple Sleep Latency Test, may have limited clinical significance. (emphases all added)

I’m not sure why the authors are surprised by the sleepiness finding. Indeed herein lies the key to the entire study. A defining feature of SDB is disruption of normal sleep cycling. Briefly, the kids don’t get a good night’s sleep. The objective measures notwithstanding, it is well-documented that attention and restlessness improve in well-rested school-age children.

I have to comment on PANDAS: This one, I fear, is headed for extinction. It is dead, defunct, an ex-diagnosis. The abstract you cite says as much.

Finally, you’re the bacterial biologist, I’m just a stupid pediatrician (and an even stupider pediatric pulmonologist). I wasn’t aware that Strep. pyogenes had an intracellular form which hid it from PCN. T&A decreases the number of recurrent Group A Strep infections, but does not prevent them.

best,

Flea
#5 Moses
April 12, 2006

Wow. I’ll be taking this to the pediatrician. I have a child with PANDAS OCD. My mother had rhuematic fever. Her brother is OCD.
#6 Tara
April 12, 2006

Bah, how’d I get “severe” from “clear?” That’s what I get for typing while watching TV. As far as the portion I left out, it was mainly to simplify the post–I didn’t want to delve further into the sleep test.

As for PANDAS, they note:

We review current scientific information and conclude that PANDAS remains a yet-unproven hypothesis. Until more definitive scientific proof is forthcoming, there seems to be insufficient evidence to support 1) routine microbiologic or serologic testing for group A streptococcus in children who present with neuropsychiatric symptoms or 2) the clinical use of antibiotic or immune-modifying therapies in such patients. The optimum diagnostic and therapeutic approach awaits the results of additional research studies.

I certainly agree it’s unproven, and that additional studies need to be done (and are currently in the works). I disagree that it’s dead, at least from my side of the aisle. One problem they note in their review is that it’s tough to define just what constitutes PANDAS, so that’s a whole additional layer on the problem of “does strep cause [insert disorder here].” From the treatment side, though, I agree it might not be so useful for y’all right now.
#7 Flea
April 12, 2006

My main point, Tara, is that the authors seem less inclined to accept that their data support their conclusions than they should be. That struck me as odd.

Occam’s razor suggests that when you have a plausible etiology (or Aetiology, whatever) that explains the phenomena you observe, you needn’t search for alternative explanations. That’s all.

best,

Flea
#8 Norman Costa
April 12, 2006

Tara,

One final observation: The disappearance of my ‘inattentive’ ADD symptoms only lasted for about a week after the completion of my dosage of antibiotics. Then it was ADD as usual.
#9 robopox
April 12, 2006

Dr. smith,
I’ve been teaching microbiology to nurses for 10 years, and
doing the “the GAS hides in tonsillar crypts” dance the whole time.

I too, like the good Dr. Flea, was unaware of the intracellular carriage
of GAS.

A reference would be great.

Intracellular GAS! who knew???

love your work!
#10 Nat
April 12, 2006

Sleep epidemiology replies…

Let’s keep in mind that ADHD is a fad diagnosis that is far more common in North America than in the rest of the post industrialised nations. That’s not to say it’s not a real and serious condition. It’s just that it’s a behavioural diagnosis and that leaves it open to inflation because it’s diagnostic criteria match some of the effects of other objectively diagnosable conditions, like sleep apnoea.

In kids (and some adults) sleep apnoea can make people hyperactive, irritable and ‘scatterbrained’. This as you can imagine can easily be diagnosed as ADHD. The underlying pathology is one of chronic unremitting sleep disruption and chronic repetitive oxygen desaturations during sleep. Ritalin will look like it’s working in these cases by masking the effects of the sleep disruption -because of it’s stimulant properties. The kicker might be that the effect of ritalin (or other stimulants) will multiply or add with the bad effects of chronic repetitive oxygen destaurations and cause heart disease in these kids when they get to adulthood. Something like this was discussed in the New England Journal in the past few weeks?

One of the issues in sleep and sleep apnoea research is that there are massive inter-individual differences in the responses of people to sleep restriction/deprivation or sleep fragmentation. So a statement like…

“Moreover, the poor correspondence between SDB measures and neurobehavioral outcomes…seems to run directly counter to expectations if SDB causes these morbidities.”

… is not terribly surprising, in a smallish clinical sample that was measured only once. That’s issue 1.

Issue 2. These samples are also prone to what’s called clinical referral bias. Basically stated -kids who have big Tonsils and/or Adenoids BUT who are asymptomatic do not get referred for surgery- they are still out in the community somewhere and not in a hospital and being recruited into this study. So all the kids coming into surgery have met some minimum level of impairment to qualify. When you do this it can be hard to find correlations between sleep disordered breathing and impairment, simply because everybody is impaired. So that lack of correlation between SDB severity and “bad stuff” does not run counter to expectations that SDB causes bad stuff BECAUSE OF THE CLINICAL SAMPLE THAT HAS BEEN USED. I guess that out in the population you will find what you find in adults- a dose response relationship, as SDB gets worse so to does the bad outcome of interest- but the dose response will be one that is fairly weak.

I think that the argument that Tara is making is not exclusive of the argument that sleep apnoea in kids causes ADHD-like symptoms. Removing the tonsils and/or adenoids in kids with big T/As who have sleep apnoea reduces their sleep apnoea and seems to improve their mental abilities. Tara’s idea of a bacterial infection causing the enlarged tonsils doesn’t make this anyless true. And it also explains why you sometimes get improvements when using antibiotics- the swelling goes down and the sleep gets better and then you feel better during the day.

There’s a growing number of studies that link snoring/sleep apnoea in kids to traditionally allergic/inflammatory diseases (rhinitis, asthma, cough, ezcema, atopy etc). Some of this relationship seems to be through allergic inflammation and some of it seems to be through non-allergic inflammation. If non-allergic inflammation of the tonsils is caused by chronic bacterial infection then it seems like these ideas are at least partially complementary? Seems like a testable hypothesis.

I do have a question for the bacteriologists out there. If people (anecdotally) improve with antibiotic treatment why do the symptoms come back so quickly? Is there re-infection or a reservior somewhere else perhaps?

I hope this hasn’t been too long for everyone.
#11 ralbin
April 12, 2006

Flea is correct about PANDAS, at least with respect to Tourette syndrome. This is a clever and plausible idea with little supporting data. Its possible that a subgroup of Tourette syndrome is due to something like PANDAS but this is unlikely to be a large fraction of TS and there is a strong possibility that PANDAS is entirely erroneous. The salient fact about TS is that it has a strong genetic component. Approximately 50% of TS patients have an affected 1st degree relative (parent, sibling) with TS. TS genetics are not simple with the best data implicating effects of multiple loci. Now, it can be plausibly argued that a genetic factor could be an inherited tendency to react excessively to Strep infections. The most interesting recent work in TS, however, is the recent Science paper by Abelson et al. (last fall) reporting the first identified locus/mutations causing TS. While mutations at this locus are only a rare cause of TS, this gene is a member of a family that likely regulates neuronal development and doesn’t seem to have anything to do with immune response or inflammation. Other recent evidence indicates that regional brain development is under strong genetic control. The likely causes of TS are loci influencing brain development.
#12 Norman Costa
April 12, 2006

Tara,

The more I read this discussion the more tidbits of information pop up in memory about my experiences with ADHD. Being a psychologist I’m more reflective about, and take more notice of, my cognitive and behavioral difficulties than most people. In fact, I instantly recognized ADHD in myself after watching a news documentary in 1994 on ADHD based on the book, “Driven to Distraction”. I went to one of the country’s top ADHD experts to confirm the diagnosis and began using Ritalin.

One of the things I’ve speculated about, privately, was the similarity of impulsive, socially inappropriate verbalizations with ADHD to verbalizations with Tourette’s Syndrome. It seemed to me that the severity of inappropriate, impulsive verbalizations could be scaled on a continuum from less severe to more severe. ADHD is on one end and TS is on the other. The incessant fidgeting and tic-like behaviors of ADHD might also be viewed as less severe manifestations on a continuum, while TS is on the more severe end.

Do my observations, albeit on a sample of one, resonate with any of your thoughts or those of others in this discussion?
#13 impatientpatient
April 13, 2006

Wow!!!! It really is true that these kids could possibley do better when they are sick then??? Let me explain- I have worked with short people for a number of years with behaviour issues. I am always amazed that after they are sick and on antibiotics they seem to be calmer and happier and less combatative. I am thrilled!!!! Thrilled I say. Only because I was observant enough to see this. We always attributed this to the kids “getting better” and sleeping more and I guess illness behaviour.

Another thing- Check out on Google about asthma and Ketek. Apparently there was a wee look into antiobiotics and asthma exacerbations… and they found there was a correlation between antibiotic use and less asthma complications.

It is just too damned bad that we are looking at such a problem with antibiotic resistance, isn’t it? I wonder what the long term implications of this information would be. Will antibiotic use go up? Will tonsillectomies become the norm again. Is that why ADHD is so prevalent- because tonsillectomies are so scarce?? Who knows.

Love your zoo disease series, but am a little afraid to sleep at night as it scares me silly to think of that monkey on #10!!
#14 Tara C. Smith
April 13, 2006

A few responses:

First, refs for intracellular strep:

Marouni MJ et al. 2004. Intracellular survival of persistent group A streptococci in cultured epithelial cells. Int J Med Micro. 294:27-33. Abstract

Group A streptococcus (GAS) is the principle etiologic agent of bacterial pharyngotonsillitis and a wide range of other diseases. Failure to eradicate GAS from patients has been documented in 5-30% of patients with pharyngotonsillitis, in spite of the continued sensitivity of GAS to penicillin and other beta-lactams. It was recently proposed that eradication failure might be attributed to the ability of GAS to maintain an intracellular reservoir during antibiotic treatment. We have previously shown that strains derived from patients with bacterial eradication failure, despite antibiotic treatment (persistent strains), adhered to and were internalized by cultured epithelial cells more efficiently than strains that were successfully eradicated. Since, penicillin and other beta-lactams do not penetrate well into mammalian cells, intracellular survival of GAS is crucial in order to persist during prolonged antibiotic treatment. In this study, we compared the survival of GAS strains from cases of eradication failure and eradication success, using an epithelial cell culture model. We found that persistent strains show significantly increased intracellular survival, compared to the ‘eradication success’ strains. This finding supports the idea that an intracellular reservoir of GAS plays a role in the etiology of antibiotic eradication failure.

Here’s a 2004 review.

Flea,

My main point, Tara, is that the authors seem less inclined to accept that their data support their conclusions than they should be. That struck me as odd.

Yep, I agree. This also didn’t seem like a Pediatrics-level paper, but then again, I don’t follow the sleep side of the research, so maybe it’s more ground-breaking or important than it seems to me.

Nat–thanks for your comments. I don’t have much else to add, but you ask:

I do have a question for the bacteriologists out there. If people (anecdotally) improve with antibiotic treatment why do the symptoms come back so quickly? Is there re-infection or a reservior somewhere else perhaps?

Well, if the tonsils are still present, that’s a big reservoir right there. Even if they’re removed, there’s the possibility of re-acquiring the infection from some other infected individual–especially if someone in the family is also a chronic carrier.

Norman (and this addresses some of the issues ralbin touched on as well):

Do my observations, albeit on a sample of one, resonate with any of your thoughts or those of others in this discussion?

Sure. I do think that, of all of the disorders currently lumped in under PANDAS, the association with TS is the weakest. It may be that strep is one contributing factor, but certainly with all of these, there is a genetic component involved as well.

impatientpatient–

We always attributed this to the kids “getting better” and sleeping more and I guess illness behaviour.

And again, that certainly may be part of it. Heck, it may be all of it. It’s difficult to tease out without good, large studies–which are tough to do. Additionally, while keeping people on antibiotics for a long time certainly isn’t plausible, having a good vaccine for strep is, in theory. Unfortunately, the most antigenic proteins known cross-react with host tissue, which have complicated things.
#15 Monado
April 16, 2006

Interesting! As a child I was told that the next time I had tonsillitis I would have my tonsils out; so the next time I had tonsillitis I didn’t tell anyone. And now, years later, I’ve finally been diagnosed as ADD inattentive type. But looking at family members and histories I’d have to say it runs in the family.
#16 Hyperion
April 27, 2006

Sorry for the late reply, I haven’t checked the page in a while, but I felt that I had to add something to this discussion:

In order for the tonsillectomy-Sleep Disorder hypothesis to be correct, virtually all scientific literature studying ADHD would have to be completely wrong. I mean you’d have to explain dozens, if not hundreds of studies in multiple fields. Sleep disturbances or infection could plausibly affect dopaminergic basal ganglia neurons, but it wouldn’t explain why it would specifically only affect the basal ganglia neurons that affect prefrontal neurons via the striatum. The disfunction in these neurons doesn’t appear to be at the dendrites in the ganglia, but rather at the presynaptic axon. If the damage were actually in the basal ganglia, you wouldn’t just see a lack of prefrontal activity, you’d see a more broad-spectrum inactivity across the entire brain, rather than the inactive prefrontal cortex and hyperactivity in other areas that we see.

Furthermore, this hypothesis wouldn’t explain the excess striatal DAT sites seen in ADHD patients. Were it not for this excess, DAT-mediated stimulants like amphetamine or methylphenidate would exhibit the same effects on ADHD patients as on the general population, but they don’t.

Sleep issues also wouldn’t explain DAT-repeating alleles found in ADHD patients, or the family clustering that implies genetic inheritance. It also focuses on attention issues rather than on the broader executive disfunctions that accompany ADHD.

Finally, Tara, I wouldn’t hold the “ADHD controversy” up as being any different from the other altie quacks. Most of the “ADHD is just a myth” or “ADHD isn’t a brain disorder” claims come from people touting homeopathy, chiropractors, and “all-natural remedies” to cure it.

Look, I understand that you’re not a neurologist or psychiatrist, but please please please read up on some of the literature of a disorder before jumping in and supporting hypotheses that are this far out of the mainstream.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=14624805&dopt=Citation
http://www.jaacap.com/pt/re/jaacap/abstract.00004583-200308000-00017.htm;jsessionid=ENsak2VPbtwcwq2EYErTjDhJJqfzAtQI5n4zvacC9tYf0UcetfV1!389595325!-949856144!9001!-1
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10793238&dopt=Citation
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10560028&dopt=Citation
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=15950001&dopt=Citation

Just for a start, these are five out of almost a thousand citations that come up on a scholar.google.com search for “ADHD and DAT.” Maybe tonsilitis causes ADHD, but I think this is a bit like the autism-vaccine link: so many people have tonsilitis that you’ll find plenty of ADHD patients who have, just like so many people get vaccinated that you find so many autistics who have. It’s an emotionally appealing explation, but it fails to take mountains of literature into account.
#17 Kristin
May 20, 2006

This article is great and I am sure that a tonsillectomy may work for some kids. Mine had no effect on my ADHD. Although for the short time that I was under anesthesia it did wonders.
#18 H's Mom
September 18, 2006

I can assure you that PANDAS is alive and well. My 6 yr old daughter literally woke up a different child about a month ago (about 5 days after having a strep infection). NO prior problems – the model child….now we are dealing with severe tic disorder (vocal and motor), hyperactivity, rage, crying, ADD, anxiety, OCD (should I continue the list??). Two weeks into this we enrolled her into a PANDAS study – she fit the profile (chorea, sudden onset, tics and OCD, age, etc.) and was accepted into the study. She has been on augmentin for about 20 days now with a little improvement but way, way, way far from her old self. The tics have gotten a little better but the emotional problems/behavior are worse. I can PROMISE you that if YOUR child presented with the most SUDDEN onset of the most SEVERE behavior and tics, you’d know this was not a normal progression of TS or OCD….this is something else, this is NOT the child it was before. I appreciate your article Tara. My Ped has said to me twice that she thinks we should remove the tonsils….My thoughts were that I couldn’t possibly add more to my daughter’s plate right now. I’ve been concerned that I haven’t seen the improvement in her that I thought I would see after being on the antibiotics this long. You have given me something to think about….

A question: If the infection is “playing hide and seek” in the tonsils, then would that make a throat culture result come back negative (even if there is in fact GAS cells hiding)? I’m assuming this would make a culture show a false negative result, but want to confirm that.
#19 Vickie
May 22, 2007

Hi all, I am a mother determined to help my 6 year old daughter. In the past two tears she has had over 13 strep infections. A consult is scheduled for tonsillectomy. This beautiful child has always been intense ‘drama queen’ since birth. Highly active and high spirited, sleeps poorly, has huge tonsils and snores. Prior to beginning Kindergarten and following yet another bout of strep throat she bagan yanking out her hair. She became fearful of new things and people. Not like her, as a military family we have moved every year of her life and she had always adjusted well. After seeing a psychologist and psychiatrist she was diagnosed with General anxiety disorder, possible ADHD, OCD and possible Tourettes. Interestingly, the first time meeting with the docs she was one day into strep and was buzzing, climbing, dancing, spinning etc. Easy for them to make the ADHD diagnosis just watching her. Next visit two weeks later on meds she sat stiil and played with toys calmly. Next visit, again with strep all over the place. Each time this child gets steep she loses control and seems to be trying to jump out of her skin. She has experienced many episodes of tic like behavior (facial, choking self, hair pulling out, skin picking etc.) on the onset of strep which then dissapears after antibiotic treatment. I have taken MSG, food coloring, BHA and BHT out of diet and her everyday behavior has improved; not nearly as impulsive, hyperactive or mobile. Tried Daytrana (ritalin)patches for ADHD, but they caused her to be irratable, aggresive and unsocial. She is taking Lexipro and is less emotional. She also is very bright and has tested 99%tile acheivement, 90%tile creativity, 80%tile motivation and 95%tile mental abilities. After reading these comments I am very curious about PANDAS and am definately having her tonsills removed. Scary for her, but in the long run, I see a brighter future. Any thoughts?
#20 Vickie
May 22, 2007

Hi all, I am a mother determined to help my 6 year old daughter. In the past two tears she has had over 13 strep infections. A consult is scheduled for tonsillectomy. This beautiful child has always been intense ‘drama queen’ since birth. Highly active and high spirited, sleeps poorly, has huge tonsils and snores. Prior to beginning Kindergarten and following yet another bout of strep throat she bagan yanking out her hair. She became fearful of new things and people. Not like her, as a military family we have moved every year of her life and she had always adjusted well. After seeing a psychologist and psychiatrist she was diagnosed with General anxiety disorder, possible ADHD, OCD and possible Tourettes. Interestingly, the first time meeting with the docs she was one day into strep and was buzzing, climbing, dancing, spinning etc. Easy for them to make the ADHD diagnosis just watching her. Next visit two weeks later on meds she sat stiil and played with toys calmly. Next visit, again with strep all over the place. Each time this child gets steep she loses control and seems to be trying to jump out of her skin. She has experienced many episodes of tic like behavior (facial, choking self, hair pulling out, skin picking etc.) on the onset of strep which then dissapears after antibiotic treatment. I have taken MSG, food coloring, BHA and BHT out of diet and her everyday behavior has improved; not nearly as impulsive, hyperactive or mobile. Tried Daytrana (ritalin)patches for ADHD, but they caused her to be irratable, aggresive and unsocial. She is taking Lexipro and is less emotional. She also is very bright and has tested 99%tile acheivement, 90%tile creativity, 80%tile motivation and 95%tile mental abilities. After reading these comments I am very curious about PANDAS and am definately having her tonsills removed. Scary for her, but in the long run, I see a brighter future. Any thoughts?
#21 Vickie
May 22, 2007

Hi all, I am a mother determined to help my 6 year old daughter. In the past two tears she has had over 13 strep infections. A consult is scheduled for tonsillectomy. This beautiful child has always been intense ‘drama queen’ since birth. Highly active and high spirited, sleeps poorly, has huge tonsils and snores. Prior to beginning Kindergarten and following yet another bout of strep throat she bagan yanking out her hair. She became fearful of new things and people. Not like her, as a military family we have moved every year of her life and she had always adjusted well. After seeing a psychologist and psychiatrist she was diagnosed with General anxiety disorder, possible ADHD, OCD and possible Tourettes. Interestingly, the first time meeting with the docs she was one day into strep and was buzzing, climbing, dancing, spinning etc. Easy for them to make the ADHD diagnosis just watching her. Next visit two weeks later on meds she sat stiil and played with toys calmly. Next visit, again with strep all over the place. Each time this child gets steep she loses control and seems to be trying to jump out of her skin. She has experienced many episodes of tic like behavior (facial, choking self, hair pulling out, skin picking etc.) on the onset of strep which then dissapears after antibiotic treatment. I have taken MSG, food coloring, BHA and BHT out of diet and her everyday behavior has improved; not nearly as impulsive, hyperactive or mobile. Tried Daytrana (ritalin)patches for ADHD, but they caused her to be irratable, aggresive and unsocial. She is taking Lexipro and is less emotional. She also is very bright and has tested 99%tile acheivement, 90%tile creativity, 80%tile motivation and 95%tile mental abilities. After reading these comments I am very curious about PANDAS and am definately having her tonsills removed. Scary for her, but in the long run, I see a brighter future. Any thoughts?
#22 Meredith
June 18, 2007

Hi there,
After reading this I am very curious to learn more. I have 3 very intellegent bright boys and two of them have been diagnosed with ADHD. My oldest is 13 and I would like to note that when he was diagnosed at 7-8 with ADHD he too was constantly batteling strep. We tried numerous forms of rytalin based medications to no avail, but he always seemed better when he was on the antibiotics. Now that he is older he is much calmer and no longer needs any medications; however, now that I think about it he has not had nearly as many episodes with strep in recent years either. I currently have a 6 yr old that has been diagnosed with ADHD and is taking Adderal 20mg per day (that seems like a lot to me) that is constantly batteling strep and was thinking of having his tonsils removed, but I wanted to research it more. I think after reading all of the above I will definatly be considering it as one of my options
#23 erin in West A. PA.
May 20, 2010

hey everyone. i’m 31 years old and was dx with G roup A S trep 3 yrs ago i’m on long term pennicillen for at least the next year DOC said cant hurt at this point since they didnt catch the strep blood infection ujntil they had treated me for 1 1/2 years for DYSTONIA and had no improvements. Finally after my 2nd “episode” of uncontrollable muscle spasms landed me in an ER i found a new Neurologist who then found the Strep in a simple blood test and put me on the right meds. now … 1 episode, a year later, (just last month actually) and on pennicillen for these last 4 mos i still have symptoms not too severe though and mostly controlled by meds with reg. blood work and checkups and even tho i’ve lost my liscense due to this last big episode i’ll wait it out and take my meds and keep positive but still i see small improvements that are enough to keep me going through those days that i suffer with my small setbacks of twitches annd spasms and feel hopeful and psitive that time and pennicillen and God will pull me through. updates to come later good luck all just wanted to share my story here seemed like a good place to say it will be ok hang in there you are not alone out there and people do care about you and are reading your stories and praying for you and your families too.–erin in West A. PA.