Sneezing girl finally diagnosed .... with PANDAS !

[Worried_Dad]

We're in the same boat, I think!

 

Dr. K told us he really believes that kids diagnosed with PANDAS after age 10 probably had it earlier but it was so mild that it was not recognized as PANDAS. As my wife and I thought back, we remembered a terrifying episode when our PANDAS son (now 13) developed a "mystery illness" at age 6. After a fever, he was suddenly unable to walk - couldn't support himself on his legs and we had to carry him around. Blood test showed that his white cell count had plummeted, way below normal level. The doc at the time spoke worriedly about things like leukemia. Man, were we freaked out!

 

After a couple of weeks, his white cell count started to rise again. The doc just told us they didn't know what it was but was probably some viral or bacterial infection. We now suspect that's when this adventure started....

 

Hope Lauren's story ends like Sammy Maloney's, Lynn. You've got some major "medical firepower" on your daughter's side, and that bodes well!!!

 

 

I guess "we're on the same boat" as Lauren had urinary frequency between age 6 & 7. Lasted for months. no UTI or bladder infection..Hmmm. I quess the three of us are idiots for not knowing about PANDAS way back when...I will stop here before I say something "not so nice" to someone "not very nice"...

 

In our own case, we missed the first two episodes when our daughter was 4.5. She had daytime urinary frequency and frequent handwashing until her hands were raw. The daytime urinary frequency, we took her in for a possible bladder infection but they found nothing. It turns out she was put on an antibiotic two weeks later for an upper respiratory infection and interestingly all the symptoms disappeared 2 weeks after that. We never made the connection at that time -- although it was in her medical history.

 

I bring this up because it's actually pretty easy for the early behavioral symptoms to be missed -- or rather we sure missed them in our child till all ###### broke loose in March 2008.

 

Buster

 

That is very interesting - our story is nearly identical. Age 3.5 - sudden obsessive handwashing, sep anxiety, fear choking, contaim fears - 2 weeks later, antibiotics for ear infection, 2 weeks later, all is fine. First week, we thought she had allergy to soap, 2nd week we knew something was wrong but seemed like anorexia & depression (which how can that be at 3??). 3rd week we were doing ERP and antibiotics, 4th week it was nearly fine just ERP, then 5th week, it was like it never happened.

 

Then nothing for 3 years, until all ###### broke out in late May 2008. Wierd. We did call it PANDAS at 3.5, but no one agreed at 6, and we gave it up for a stupidly long time. 2nd episode untreated except for antibiotics for a week in the middle, lasted total of 3 months. About 6 weeks of which were really bad. 3rd episode untreated except for inital ear infection - lasted 5 months, but there was an impetigo exposure at about 2 months that was a huge uptick and was really bad for another 6 weeks, and then trending down again, and much helped by antibiotics towards the end of month 4. We always do ERP.

[sf_mom]

I've been posting this a lot but I feel its important...... read specifically where it addresses the ability to destroy white blood cells. Again, the exotoxins of the S. pyogenes was found in 100% of Kawasaki's patients..... In Kawasaki's there are NO RISED ASO OR ANTI-DNAse-B Titers allowing them to pin point bacteria.

 

Characteristically, Streptococcus pyogenes is a Gram-positive facultative anaerobic bacterium. It is not motile, and does not produce spores. It occurs as long chains of cocci, and occasionally in pairs. Streptococcus pyogenes is classified as Group A streptococcus. Group A streptococci typically have a capsule composed of hyaluronic acid and are beta-hemolytic, which is true for Streptococcus pyogenes.[1] Beta-hemolytic streptococci produce a toxin that forms a clear zone of hemolysis on blood agar, demonstrating its ability to destroy red blood cells. This hemolysis is attributed to toxins formed by Group A streptococci called streptolysins. Streptolysins can destroy not only red blood cells, but also the white blood cells responsible for fighting off bacteria and disease, as well as other body cells.[2]

 

Several factors add to Streptococcus pyogene’s ability to cause disease. These factors include its production of exotoxins and streptokinase, the M proteins on its surface, and its hyaluronic acid capsule. Streptococcus pyogenes produces three types of exotoxins. These toxins are responsible for causing fever and scarlet fever rashes; they also increase the risk of endotoxic shock and depress antibody synthesis.[3] Streptococcus pyogenes also produces streptokinase, a toxin that digests blood clots to assist in the invasion of wounds. The cell wall of Streptococcus pyogenes contains M proteins, which are a major factor behind its virulence. M protein is heat and acid resistant, it aids in the attachment to host tissues, and helps the cell to resist phagocytosis. Host immunity to Streptococcus pyogenes results from the development of antibodies specific to M protein.[4] The hyaluronic acid capsule of Streptococcus pyogenes is chemically similar to human connective tissue, which allows it to go unrecognized as an antigen by the host’s body, further helping the bacteria to avoid phagocytosis.[5]

 

 

 

 

We're in the same boat, I think!

 

Dr. K told us he really believes that kids diagnosed with PANDAS after age 10 probably had it earlier but it was so mild that it was not recognized as PANDAS. As my wife and I thought back, we remembered a terrifying episode when our PANDAS son (now 13) developed a "mystery illness" at age 6. After a fever, he was suddenly unable to walk - couldn't support himself on his legs and we had to carry him around. Blood test showed that his white cell count had plummeted, way below normal level. The doc at the time spoke worriedly about things like leukemia. Man, were we freaked out!

 

After a couple of weeks, his white cell count started to rise again. The doc just told us they didn't know what it was but was probably some viral or bacterial infection. We now suspect that's when this adventure started....

 

Hope Lauren's story ends like Sammy Maloney's, Lynn. You've got some major "medical firepower" on your daughter's side, and that bodes well!!!

[Worried_Dad]

Yeah, SF Mom, I remember seeing this in one of your other threads and thinking again about our son's "mystery infection." Seems like I recall somebody saying this can cause the "muscle weakness / difficulty walking" symptom, too. Is that associated with Kawasaki's?

 

 

I've been posting this a lot but I feel its important...... read specifically where it addresses the ability to destroy white blood cells. Again, the exotoxins of the S. pyogenes was found in 100% of Kawasaki's patients..... In Kawasaki's there are NO RISED ASO OR ANTI-DNAse-B Titers allowing them to pin point bacteria.

 

Characteristically, Streptococcus pyogenes is a Gram-positive facultative anaerobic bacterium. It is not motile, and does not produce spores. It occurs as long chains of cocci, and occasionally in pairs. Streptococcus pyogenes is classified as Group A streptococcus. Group A streptococci typically have a capsule composed of hyaluronic acid and are beta-hemolytic, which is true for Streptococcus pyogenes.[1] Beta-hemolytic streptococci produce a toxin that forms a clear zone of hemolysis on blood agar, demonstrating its ability to destroy red blood cells. This hemolysis is attributed to toxins formed by Group A streptococci called streptolysins. Streptolysins can destroy not only red blood cells, but also the white blood cells responsible for fighting off bacteria and disease, as well as other body cells.[2]

 

Several factors add to Streptococcus pyogene’s ability to cause disease. These factors include its production of exotoxins and streptokinase, the M proteins on its surface, and its hyaluronic acid capsule. Streptococcus pyogenes produces three types of exotoxins. These toxins are responsible for causing fever and scarlet fever rashes; they also increase the risk of endotoxic shock and depress antibody synthesis.[3] Streptococcus pyogenes also produces streptokinase, a toxin that digests blood clots to assist in the invasion of wounds. The cell wall of Streptococcus pyogenes contains M proteins, which are a major factor behind its virulence. M protein is heat and acid resistant, it aids in the attachment to host tissues, and helps the cell to resist phagocytosis. Host immunity to Streptococcus pyogenes results from the development of antibodies specific to M protein.[4] The hyaluronic acid capsule of Streptococcus pyogenes is chemically similar to human connective tissue, which allows it to go unrecognized as an antigen by the host’s body, further helping the bacteria to avoid phagocytosis.[5]

 

 

 

 

We're in the same boat, I think!

 

Dr. K told us he really believes that kids diagnosed with PANDAS after age 10 probably had it earlier but it was so mild that it was not recognized as PANDAS. As my wife and I thought back, we remembered a terrifying episode when our PANDAS son (now 13) developed a "mystery illness" at age 6. After a fever, he was suddenly unable to walk - couldn't support himself on his legs and we had to carry him around. Blood test showed that his white cell count had plummeted, way below normal level. The doc at the time spoke worriedly about things like leukemia. Man, were we freaked out!

 

After a couple of weeks, his white cell count started to rise again. The doc just told us they didn't know what it was but was probably some viral or bacterial infection. We now suspect that's when this adventure started....

 

Hope Lauren's story ends like Sammy Maloney's, Lynn. You've got some major "medical firepower" on your daughter's side, and that bodes well!!!

[nevergiveup]

Ok so everytime I hear about vaginal or anal strep I am confused. What are the symptoms??? How is it treated? Is it easily eradicted? How do you get it? Do lots of people get it? Do ob gyn test for this at your yearly check ups? Is it the same bacteria in your mouth? Is that how it is transferred?

 

Laura's mom, is your daughter on abx? Will she then not test positive for this type of strep? Also what treatments are they recommending for your childs tic? Is she seeing any improvements with time? Is she attending school right now?

It sounds like you are checking in on the forum regularly. Can you give treatment and protocol feedback to help those of us whom do not have direct access to Leckman?

 

On this forum, we have had open dialogue in reference to many doctors, Beth Maloney, media, research studies, John Hopkins(yuk) etc......... Including your daughters media exposure.

 

Asking questions, leaning on each other, learning and sharing are the reason why this forum is so beneficial to so many and why this chat room works and other chat rooms feel more like a group therapy session. We have some pretty devoted parents whom so willingly educate and share and inquire. Some down right experts with open minds. This constant questioning and digging is what has brought many on this forum to find real solutions for our kids.

[sf_mom]

"muscle weakness / difficulty walking and inability to walk" is not necessarily Kawasaki's but definitely Rheumatic Fever. Did they culture him at the time? Did he have raised titers ever? If he had titers I would suspect Rheumatic Fever. Do you have any of his labs from when he was 6 'happy to let you know what to look for in labs'? If he does not currently have raised titers, I would suspect Kawasaki's.... One of the diagnosing symptoms for Kawasaki's is high fever for 5 or more days. A lot of times, children with Kawasaki's are very restless... so an inability to sleep due severe joint pain. Kawasaki's shares 93 symptoms with RF. The only reason Kawasaki's is not consider RF is currently due to lack of research and inability to identify strain of bacteria. BUT, as you know there are some studies that claim its the S. pyogenes inclusive is the M1, M3 and M18 strains that are extremely difficult to eradicate from host (sound familiar).

 

I would say the IVIG has helped but the long term antibiotics are tiring the BACTERIA out. Hang in there as I think you'll see full recovery. It may take a while.... but it will happen.

 

-Wendy

[Worried_Dad]

Oh - no, afraid we don't have any of the labs. This was 7 years ago, when we lived down in Ohio. Honestly, I don't even remember the name of the PromptCare clinic there anymore. They never mentioned any strep-related result, but I don't remember if they did strep titers.

 

And yes, we definitely saw this kind of symptom 2+ years ago, when our son was originally diagnosed with ARF / SC in July 2007. But - back in 2002 in Ohio - I don't remember him having any other obvious PANDAS or RF/SC symptoms. He was still the same sweet child, just could not walk and was feverish.

 

I suspect we'll never know for sure....

 

 

"muscle weakness / difficulty walking and inability to walk" is not necessarily Kawasaki's but definitely Rheumatic Fever. Did they culture him at the time? Did he have raised titers ever? If he had titers I would suspect Rheumatic Fever. Do you have any of his labs from when he was 6 'happy to let you know what to look for in labs'? If he does not currently have raised titers, I would suspect Kawasaki's.... One of the diagnosing symptoms for Kawasaki's is high fever for 5 or more days. A lot of times, children with Kawasaki's are very restless... so an inability to sleep due severe joint pain. Kawasaki's shares 93 symptoms with RF. The only reason Kawasaki's is not consider RF is currently due to lack of research and inability to identify strain of bacteria. BUT, as you know there are some studies that claim its the S. pyogenes inclusive is the M1, M3 and M18 strains that are extremely difficult to eradicate from host (sound familiar).

 

I would say the IVIG has helped but the long term antibiotics are tiring the BACTERIA out. Hang in there as I think you'll see full recovery. It may take a while.... but it will happen.

 

-Wendy

[harmony]

Ok so every time I hear about vaginal or anal strep I am confused. What are the symptoms??? How is it treated? Is it easily eradicted? How do you get it? Do lots of people get it? Do ob gyn test for this at your yearly check ups? Is it the same bacteria in your mouth? Is that how it is transferred?

 

Laura's mom, is your daughter on abx? Will she then not test positive for this type of strep? Also what treatments are they recommending for your childs tic? Is she seeing any improvements with time? Is she attending school right now?

It sounds like you are checking in on the forum regularly. Can you give treatment and protocol feedback to help those of us whom do not have direct access to Leckman?

 

On this forum, we have had open dialogue in reference to many doctors, Beth Maloney, media, research studies, John Hopkins(yuk) etc......... Including your daughters media exposure.

 

Asking questions, leaning on each other, learning and sharing are the reason why this forum is so beneficial to so many and why this chat room works and other chat rooms feel more like a group therapy session. We have some pretty devoted parents whom so willingly educate and share and inquire. Some down right experts with open minds. This constant questioning and digging is what has brought many on this forum to find real solutions for our kids.

My daughter had strep in her vagina several years ago. She had burning and inflammation. Her Dr. gave her a vaginal culture- it was positive.

I found out a few days later, while talking to another mother (whose 2-3 year old son attended the same after school program as my daughter), she said her son's penis was red and had pus bubbles for several months, she said she just thought it was really bad diaper rash from his diapers he wore during the night and left it untreated- she finally took him to the Dr. a few days before. She started to laugh, "I just got the phone call this morning, it was STREP!!!" The mother still sent him to school that day like it wasn't a concern.

 

My daughter most likely caught it from sharing the same toilet seat as the severely infected boy. (I called her Dr. ask asked if this was possible- "Absolutely", she said "she believes that to be the most common form of transmission")

My daughters treatment was oral antibiotics- it cleared up completely within a few days. I do not think GYN check for this routinely, or at least I have never been.

Hope this helps.

[EAMom]

Our dd tested positive on both throat culture and peri-anal in the hosp. in March 08. With her, I wonder if it started with the throat, and then just spread to the skin b/c her hands/fingers likely had strep on them.

 

We checked b/c I noticed some blood in the "hat" thing they make patients pee into in the hospital (she was 7.5 years old at the time).

[sf_mom]

Hey, as long as he gets better, right!!!! I just know he will. Keep doing what you are doing. I suspect back when he was 6 it was also ARF.... if not on a daily antibiotic they often suffer a relapse when exposed to strep again. Sound familiar?

 

-Wendy

[Laurensmom]

Hello LaurenJohnsonsMom, another Lauren'smom here - I'm glad you finally have answers. What a relief!

 

Pardon me if this is a redundant question but how was it determined that Lauren had PANDAS? Did she have a positive strep other than her culture?

 

I ask because my child had a strep culture, about a year after her tics came about. Her symptoms did come on rather quickly, with an eye blinking and a throat clearing that persisted. But, a strep culture was negative so PANDAS was ruled out.

 

Also, what is vaginal strep guys? I'd never heard of it!

 

And, how long can PANDAS be diagnosed, after an initial illness? Would strep show up in titers or??? My dd definitely sees an increase in tics when ill. Often just before symptoms of illness appear.

 

LJ's Mom, I wanted to say I appreciated your willingness to find answers for your child. I knew immediately upon seeing you both on NBC that Lauren had tics. I was annoyed with the suggestion by Dr. Nancy that it was due to psychological trauma of some kind.

[sf_mom]

You are suppose to be checked when you give birth for strep.... swabbed at about 35 weeks.

 

I do not think GYN check for this routinely, or at least I have never been.

[EAMom]

I do think the vaccinations may have played a part but I still think the media is kinda weird about voicing too many negative things about vaccines while they are trying to help sell the H1N1 vaccine.

 

When was the time table for the vaccines vs the virus vs the tic?

 

 

the mother said it here on the forum that her daughter had those two vaccines in the last six months. She didn't say she had any flu shots, but that is a hunch of mine that it may have been in the mix as well. and don't forget, the Gardicil is given in increments of three separagte shots, I believe, so she may have gotten the first one, the second one and still had yet to get the last. don't really know exactly how it works, but its something like that. I know my doctor has said they wouldn't give the gardicil to their kids and perhaps I shouldn't post that here, but I am because it is the truth.

 

While I think it is possible that vaccines might have contributed to Lauren's issues (just like a virus or non-strep bacterial infection can trigger an excerbation, I believe vaccines can as well), I don't feel it's productive to draw attention to the vaccine issue at this time. In one of the newscasts, they mentioned that Lauren had a cold/virus (sneezing) just before this started....so I suspect that was the likely trigger of her current symptoms. Perhaps there is also underlying strep. And strep should have been the original trigger that set the wheels of this whole scenario in motion years ago.

 

Peglem had a very good point from another thread http://www.latitudes.org/forums/index.php?...art=#entry47135. If you start talking focusing on vaccines, you get quickly labeled as "kooks", which is the last thing the PANDAS image needs at this point (I added the bold):

 

Despite that, I think we need to make it as simple and clear as possible- w/ the internet, parents who are trying to figure this out will easily be able to find sites like this one that elaborate more. If you get too anecdotal it will not be acceptable to the medical community and rejected by NIMH. And though I suspect vaccines played a part in all this for my daughter- that seems to be a political hot spot that is guaranteed to make people not take you seriously. I don't want that debate to taint this issue. We can do talk about that here with each other and try to find research on it and what not- but it seems nothing says "kook" to the medical community more than someone questioning those sacred shots!!

[EAMom]

lauren's mom....I think you should change your screen name to "notlaurenjohnsonsmom"

[Suzan]

ruled out.

 

Also, what is vaginal strep guys? I'd never heard of it!

 

From what I know, you can get vag. strep B or A. Strain B is the strain most commonly found during pregnancy and pregnant women are treated with antiboitics so it is not transmitted to the baby during birth. Strep A can also be found in the vagina which at this point is more of a concern for our PANDAS children. This is the strep that caused my daughter's episodes this year (and maybe other years undiagnosed, we just don't know).

 

I did ask Dr. Cunningham if Strep B was a concern for our children since I was diagnosed this year with it and she responded that all strep is related so it could affect our children by being exposed to it. I was treated but my doc would not check to ensure it was gone. I didn't push it at this point but I'll have him check at my next physical next year.

 

Susan

[EAMom]

Vaginal strep can be an issue in prepubertal girls. Here are some quotes I got from googling:

 

Respiratory pathogens, such as group A beta-hemolytic Streptococcus and Branhamella catarrhalis, or enteric pathogens, such as Escherichia coli or Shigella organisms, can cause vaginitis with discharge and genital erythema; therefore, obtain a routine culture from the vagina.

 

and

 

What specific infections cause vulvovaginitis in the prepubertal child?

 

Group A Beta-hemolytic streptococcus (GABHS) is not an uncommon cause of vulvovaginitis. It is often accompanied by an anal streptoccoccal proctitis (which presents as a beefy, red, well demarcated ring the size of a quarter around the anal area). GABHS vulvovaginitis presents with a purulent vaginal discharge which may simply manifest itself as soiling on the child’s panties.. Candida vulvovaginitis is extremely uncommon in the prepubertal child who is no longer wearing diapers. It must be remembered however that some of these children do wear diapers at night only (nocturnal enuresis) until they are well beyond 5 years of age and they may be susceptible to a candida vulvovaginitis

 

and

 

 

from this link: http://adc.bmj.com/cgi/content/abstract/88/4/324

This retrospective study evaluated the clinical features and findings in bacterial cultures and in microscopic examination of vaginal secretions in 80 prepubertal girls, aged 2–12 years, with vulvovaginitis. Vaginal secretions were obtained directly from the vagina with a sterile catheter carefully inserted into the vagina. Pathogenic bacteria were isolated in 36% of cases. In 59% of these cases the isolated pathogen was group A ß-haemolytic streptococcus

 

and

 

Here's a case (I added the bold) of a 4-year-old who had recurrent vaginal strep (treated with pennicillin). Apparently she kept getting re-infected from her own throat. They finally cleared her with a combo of pen and rifampin:

Streptococcus pyogenes pharyngeal colonization resulting in recurrent, prepubertal vulvovaginitis.

Hansen MT, Sanchez VT, Eyster K, Hansen KA.

 

Department of Obstetrics and Gynecology, Rush University Medical Center, Chicago, Illinois, USA.

 

BACKGROUND: Recurrent, prepubertal, vaginal infections are an uncommon, troublesome problem for the patient and her family. Failure of initial therapy to alleviate vulvovaginitis may be related to vulvar skin disease, foreign body, sexual abuse, pinworms, reactions to medications, anatomic anomalies, or allergies. This report describes a case of recurrent Streptococcus pyogenes vulvovaginitis secondary to presumed vaginal re-inoculation from pharyngeal colonization. CASE: A 4-yr-old presented with one year of culture proven, recurrent Streptococcus pyogenes vulvovaginitis. Her symptoms repeatedly resolved with penicillin therapy, but continued to recur following cessation of antibiotic therapy. Evaluation included physical examination, trans-abdominal pelvic ultrasound, and vaginoscopy which all revealed normal upper and lower genital tract anatomy. Both the patient and her mother demonstrated culture proven, Group A Streptococcus pharyngeal colonization. Because of the possibility of repeated inoculations of the vaginal area from the colonized pharynx, they were both treated for decolonization with a regimen of amoxicillin and rifampin for ten days. Following this therapy there was resolution of vaginal symptoms with no further recurrence. Follow-up pharyngeal culture done on both mother and child on their last visit were negative for Group A Streptococcus. CONCLUSION: This case demonstrated an unusual specific cause of recurrent vaginitis resulting from presumed self or maternal re-inoculation with group A beta-hemolytic streptococcus from pharyngeal colonization. Group A beta-hemolytic streptococcus are consistently sensitive to penicillin, but up to 25% of acute pharyngitis cases treated with penicillin having continued asymptomatic, bacterial carriage within the nasopharynx. Thus initial alleviation of symptoms in a patient with Group A beta-hemolytic vulvovaginitis treated with penicillin, can have continued asymptomatic pharyngeal colonization which can result in recurrence of the vulvovaginitis. This case stresses the importance of considering re-infection through this route in the patient with recurrent Group A beta-hemolytic streptococcus vulvovaginitis.

PMID: 17868900 [PubMed - indexed for MEDLINE]