Strep in the classroom, and updates all around...

[dcmom]

Hi all. I see there are so many new parents (which makes me so sad- yet happy you have found a place to help) so I will give a brief recap:

 

DD, Julia, had an overnight, acute onset of ocd last February. She was diagnosed with strep, and then pandas, a few weeks later. Recovered on full strength zith for 30 days, T&A surgery, relapse, steroid burst shows great improvement, relapse, plasma pheresis- total and immediate remission, H1N1, start to relapse, steroid burst, holding steady now since November.

 

She does have some minor ocd issues (thank you H1N1) that frustrate her- but she is 96% improved. She still does react to strep exposure (currently on treatment dose of azith) with typically a 3-4 day uptick in mood issues and ocd frustration. This happened at the end of last week, and then the email that a boy in her class has strep. As long as she seems healthy, I continue to send her to school. I had an email yestarday, and now one today, of two additional kids in the class diagnosed with strep.

 

So what do you do? Would it be prudent to keep her out for a few days when she flares, until most of the strep cases are flushed out and treated? Is anyone else dealing with this stuff?

 

Her sister Caroline had a bid of a more gradual pandas onset- overnight it was mild, but 9 mos later H1N1 (lovely) caused a dramatic spike. We are (fingers crossed) heading for plasma pheresis with her soon. Will keep you posted on her condition.

[sf_mom]

As you know we had a recent exposure: It can take 7 to 10 days to circulate through the room. I just didn't want Corsa to struggle unnecessarily so we pulled him for a full week, the week after was winter break so he was off school for a full two weeks. I'm hoping next year when his immune system has rebounded more that I can be a little bit more relaxed about exposures.

 

I am looking forward to the spring!!!!!! Pray you see no increase in behavior in either of your kids.

 

-Wendy

[thereishope]

Today is Friday. So, hopefully, all other cases of strep will be diagnosed by Monday. If it's one child in the class, I'd send my son to school. When the number rises, I'd probably pull him out for a couple days just to let it run it's course through the class and make sure the kids that contracted it had time to show symptoms and get taken to the dr.

 

I hate it when strep enters the classroom. I take my kids to rule it out when it's in the classroom. But a strep test may not even show up + until a few days after infection. I never know the ideal time to take them if no PANDAS symtpoms have surfaced yet. My non-PANDAS kids do not show symptoms of strep either. So the only way to rule it out is a test.

[DebC]

There are no PANDAS doctors in our area. Therefore, in October, I wrote a long letter with our story for both our pediatrician and ENT documenting Lillian's PANDAS journey along with research. I asked them in my letter if they could be the doctor in our area who could possibly treat PANDAS. I didn't hear from either of them, however, when we were at a routine ENT visit in January, our ENT started a fairly in depth conversation about PANDAS and agreed that we needed to prevent Lillian from contracting strep. He told me to call during outbreaks and that he would put her on Augmentin during those times. A week later, strep was rampant in her classroom. I placed a call to our ENT and he prescribed Augmentin for 10 days as promised. When the outbreak continued, he extended the prescription for another 10 days and gave us permission for one refill. I am holding on to that refill for the next outbreak. It's nice to know that it is there when we need it. So far, this has worked and she is symptom free. She's in third grade and they are learning so much that it's hard to pull her from the classroom.

[worriedmommy]

Can anyone explain why PANDAS kids have an exacerbation of symptoms when strep is in the classroom. Do there symptoms pick up if they catch strep? I ask b/c my daughter had an explosion of tics a few weeks back (never been dx with tics, PANDAS or anything before), and come to find out that 11 kids in her classroom had strep. 3 of the 11 cases were confirmed prior to her onset of tics. Don't know if my dd actually caught strep b/c she wasn't cultured and she is currently on day 12 of Amoxicillin as a preventative measure.

[reactive]

Hi all. I see there are so many new parents (which makes me so sad- yet happy you have found a place to help) so I will give a brief recap:

 

DD, Julia, had an overnight, acute onset of ocd last February. She was diagnosed with strep, and then pandas, a few weeks later. Recovered on full strength zith for 30 days, T&A surgery, relapse, steroid burst shows great improvement, relapse, plasma pheresis- total and immediate remission, H1N1, start to relapse, steroid burst, holding steady now since November.

 

She does have some minor ocd issues (thank you H1N1) that frustrate her- but she is 96% improved. She still does react to strep exposure (currently on treatment dose of azith) with typically a 3-4 day uptick in mood issues and ocd frustration. This happened at the end of last week, and then the email that a boy in her class has strep. As long as she seems healthy, I continue to send her to school. I had an email yestarday, and now one today, of two additional kids in the class diagnosed with strep.

 

So what do you do? Would it be prudent to keep her out for a few days when she flares, until most of the strep cases are flushed out and treated? Is anyone else dealing with this stuff?

 

Her sister Caroline had a bid of a more gradual pandas onset- overnight it was mild, but 9 mos later H1N1 (lovely) caused a dramatic spike. We are (fingers crossed) heading for plasma pheresis with her soon. Will keep you posted on her condition.

I replied on another recent post where this kind of came up too. The problem we have had recently is that there is a girl in my ds 3rd grade class who has had strep 3 times in the last 2 months. And, her tonsils are already out! I only know about this girl as her mom and I were helping plan the class Valentine party and she was telling me...she does not know about ds and possible PANDAS. Our school does not notify of strep in the class so I have no idea who else...but since Dec ds symptoms are way up...but I always do notice a trend from Dec to Mar each year...

 

And I agree...3rd grade is a huge year...

[PANDAS_Denmark]

Hi all. I see there are so many new parents (which makes me so sad- yet happy you have found a place to help) so I will give a brief recap:

 

DD, Julia, had an overnight, acute onset of ocd last February. She was diagnosed with strep, and then pandas, a few weeks later. Recovered on full strength zith for 30 days, T&A surgery, relapse, steroid burst shows great improvement, relapse, plasma pheresis- total and immediate remission, H1N1, start to relapse, steroid burst, holding steady now since November.

 

She does have some minor ocd issues (thank you H1N1) that frustrate her- but she is 96% improved. She still does react to strep exposure (currently on treatment dose of azith) with typically a 3-4 day uptick in mood issues and ocd frustration. This happened at the end of last week, and then the email that a boy in her class has strep. As long as she seems healthy, I continue to send her to school. I had an email yestarday, and now one today, of two additional kids in the class diagnosed with strep.

 

So what do you do? Would it be prudent to keep her out for a few days when she flares, until most of the strep cases are flushed out and treated? Is anyone else dealing with this stuff?

 

Her sister Caroline had a bid of a more gradual pandas onset- overnight it was mild, but 9 mos later H1N1 (lovely) caused a dramatic spike. We are (fingers crossed) heading for plasma pheresis with her soon. Will keep you posted on her condition.

 

Interesting and very relevant question, that I have to deal with every time my choises are questioned, not only by the school and family, but social workers and doctors as well.

I must admit, that I am keeping my DS9 out of school every time that there is confirmed cases of strep in the class, as I know by experience, that he´ll react with an exacerbation due to mere exposure.

I look at it this way : I can CHOOSE to keep him out of school for a few days to prevent an exacerbation and as a result of that send a happy and normally functioning kid back in school - or I will HAVE to deal with an unhappy and in every way not functioning (tics, OCD, separation anxiety etc.) kid not able to attend school for weeks anyway, only a few days later.

Noone would even consider sending a kid suffering from osteoporosis skiing on the black piste, or am I wrong ?

[thereishope]

About a child having PANDAS symptoms due to exposure only, I don't really have an explanation as to why this happens. But, it's been compared to a peanut allergy before. When a child has a severe peanut allergy, just being around peanuts or breathing in the air borne particles, makes them have a reaction. This is why it is alos important to rule out strep within the household. 1, because you don't want to reinfect the PANDAS child and 2, exposure can cause symptoms to not improve. The "exposure" response is not in every PANDAS child. Some will say their child is a "canary". Their increase in PANDAS problems means someone has strep.

 

About being notified...it is not a standard protocal in my school, but I called the principal and explained the situation and I now get a phone call if strep is in the kindergarten (PANDAS child) or 3rd grade (non PANDAS child). What I'm scared about is when my 3 yr old starts preschool next year. Anyway, request to be notified. They may cooperate with you on this. They do not say the child's name, just that it was in the grade. If I ask which class, they tell me.

[Kayanne]

I'm sorry that you are having to decide this...As you know from one of my posts, all three of my non-PANDAS kids have been positive for strep over the last few weeks. (I've been watching them very closely...so far just emotional labiltiy...so hard to tell if it is realted to PANDAS)

 

We have seen an increase in Rebecca's PANDAS symptoms...last Sunday, I took her into see the pediatrician because a "cognitive inflexible" episode ended with her crying in the bottom of her closet...very scary...plus she has lost 2 pounds because she is having a hard time with thinking that the food she is eating is getting stuck in her throat. She has been exposed to strep in the class, without any noticable issues, but I just think having 3 siblings positive with it was too much for her immune system.

 

I think if it is feasible, try to keep Julia home--that many kids with strep is a lot for her healing system to deal with. We are currently beginning the process of setting up a 504 plan for my daughter, and one of the things that I want to have spelled out in the plan is to be able to take her out of school if needed.

 

However, My whole house has been dealing with a cough, and Rebecca had it too...so it is hard to say if maybe that could be the reason behind her upswing...somehow I doubt it because she did so well with the Flu. I keep askting the peds if they think it is mycoplasma, and they keep saying their lungs sound good.

 

Anyway, the ped did the rapid test again...negative...72 hour culture was negative, but she did prescribe 10 days of Omnicef...and told me to break the dosage up to twice a day, because she likes to do that with strep.

 

She is doing better...I think the pen v k was keeping the strep from taking hold, but her immune system still had to kick in to eradicate any bacteria that tries to take hold...the full strength Omnicef is slowing the bacteria down better than the pen vk...thus helping her immune system more. We've also started all the kids on Omegabrite.

 

For us right now, the worst part about PANDAS is the waiting game and the constant scrutiny that I have my kids under...will her symptoms increase? and if they do, how long to wait before trying a steroid?

[dcmom]

Kayanne- that stinks that your other kids got strep! The one benefit of having all kids in the houshold be pandas, is having them all on antibiotics- I guess.

 

Julia has a three day weekend- and is doing well- so I will probably send her back on Tuesday. It is a tough call, she hates to miss school, and of course- I hate her to miss, as when she gets out of the habit of going to school, I feel that could be trouble. I guess I try to use her behavoir as a guide- but I am always over scrutinizing and second guessing!

 

I will tell you, I get nervous when she has an uptick due to exposure. But, when she was relapsing after the flu- it was very different. We waited about 3 days (to be sure) to start the steroid. Each day was significantly worse. First day: totally irritable all day, Second day: irritable, separation anxiety, some ocd, Third day: extreme separation issues, zombie like look and mode, extremely pale and sickly looking, tons of anxiety. The good news is, the first dose of steroids stopped the downward spiral, and by about the fourth dose she was 90%. It was an unbelievable turn around.

 

My older one, has had a pretty big exacerbation due to a cold You never know what is going to get them.

 

How are things with Rebecca now?

[worriedmommy]

So, can just exposure to a cold also cause an exacerbation of symptoms? I'm curious b/c dd has been on antibiotics since the Feb 15, and up until this past Saturday (Feb 27) we were seeing some improvement. Then things started going downhill FAST. Tics back to every 1-3 seconds. My dd is healthy, but her increase in tics came on the same day that my son woke up sick, threw up, croupy cough. He denies a sore throat, but has had asymptomatic strep in the past, so we're getting him cultured today. However, if it's not strep, does this rule out that dd's increase in tics was a result of being around ds's illness?

 

So confused...so frustrated...

[dcmom]

We need a good immunologist here. I would imagine the immune system gets primed and ready to go when it encounters illness- but I am not a doc, I don't know. My dd, Julia, has had small 3-4 day flares in pandas when she has been exposed to strep and lost a baby tooth. Her sister had a bad episode (that she is still in) after a bad cold.

 

Antibiotics (for many) do not cure pandas. Nor do they necessarily stop an episode or a flare. What they do is hopefully prevent strep, and maybe help modulate the immune system, so flares are milder and shorter.

 

I need Immune 101- what and how do things engage the immune system....

[sf_mom]

I like to post this because its so easy to understand in relation to PANDAs.... hopefully it helps.

 

The discovery of PANDAS came through observing the reactions of patients. Initially, Swedo's team noticed a group of patients who were ill with infections and then suddenly developed dramatic psychiatric symptoms. At first, they were not sure streptococcus was the culprit but research soon isolated the strep antibodies as an important focus of interest.

 

PANDAS is controversial in medical circles with some physicians questioning whether such extreme psychiatric symptoms can be triggered by strep antibodies. However, according to Dr. Swedo, there is little doubt that the body's efforts to fight the strep bacteria set off a chain of events leading to PANDAS symptoms. "The science is clear now," Swedo asserts. "We not only have a direct relationship between the anti-strep antibodies and the anti-neuronal antibodies, but also have demonstrated that the antibodies interact with receptors in the brain that could produce the symptoms observed."

 

Normally when the strep bacteria enter the body, they defend themselves by mimicking healthy cells and elude detection by the immune system. Using the stealth strategy, the strep bacteria create an infection. In response, the body naturally creates antibodies - cellular components designed to find the bacteria, bind with them and direct the immune system to destroy the bacteria. When this happens as designed, the antibodies find the strep bacteria and the immune system wins the battle.

 

However, antibodies are not terribly discriminating and sometimes cannot tell a streptococcus bacterium apart from a healthy cell. In some children, these antibodies pass into the brain and look for something to connect with. In PANDAS, the strep antibodies are unable to discriminate between strep and healthy brain cells. However, the union of strep antibody and neural tissue is not a match made in heaven. Recent research, reported last fall by University of Oklahoma researcher, Madeleine Cunningham, suggests that the antibodies connect with parts of the brain which regulate repetitive behaviors and movement, such as compulsions and tics. According to Dr. Swedo, such autoimmune actions may have the direct result of producing obsessions, compulsions and tics; and in addition, they might indirectly offset the critical balance of brain chemistry which regulates mood and emotion.

 

Compounding the problem is the durability of strep antibodies. They can remain on the prowl for a hook up weeks after the strep is gone. Subsequent infections or even colds can stimulate the immune system to produce more of the same kind of antibodies which the triggered the original symptoms. PANDAS children can then abruptly re-experience the same symptoms after a symptom-free span of time. Dr. Swedo explained, "We see a saw-toothed pattern of symptoms, extreme outbursts of behaviors for a brief period in response to the infections and then the child may be relatively symptom-free for a period of time."

 

 

http://www.christianpost.com/blogs/health/...c-09/index.html