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symptom days have been coming more and more often for my dd, I know there are known cases of strep at her school(as of last week) over the last two weeks I have found her in a corner with a blanket over her head crying for no reason, she is extreamly moody, biting peoples heads off and yelling at them for no reason whatsoever.. crying alot..

and this weekend she was to spend the night at my parents house(something on none symptoms days she LOVES to do) she ended up crying for 5 hours non stop and not just a cry, a freaked out scared out of her mind cry..

DH and I was out of state for my oldest softball tournament that night, but after hearing how she was acting on the phone DH drove the few hour drives back to pick her up and brought her back to the hotel we were at.. talk about a long trip for him but worth it for DD.

 

I went in and talked to her pedi(who is her only doctor at the moment treating the PANDAS) about incressing her dose of antibiotic when we know she has come in contact with strep..

 

He does not want to do that, said it wouldn't do a bit of good,(yet he also doesn't believe that she can't get symptoms just by coming in contact with somone with strep, turst me I know he is wrong on that one)

 

What he wants to do is start her on a low dose of zoloft..

 

I don't know about this.. it sort of scares me to put her on a medication like an antidepressent..

 

Though at this moment she is screaming at her brother just for asking her a question.. so her symptoms are nowhere under control at the moment.

 

The doctor doesn't think it is fear to leave her screaming and crying for hours on end and hiding in a coner under a blanket when (he thinks) the zoloft could take those things away???

 

Does stuff like zoloft even work with PANDAS kids?? she is only 8 years old starting something like that just really scares me so any advice/expiernce with this sort of thing good or bad is greatly welcomed.

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I can only answer with our experience.

 

Our DS is taking both abx and low-dose Zoloft and, yes, it has helped him. We found that, even after a year of high-dose abx, he continued to struggle with OCD and some signs of depression . . . mostly castigating himself and taking minor setbacks very hard. The Zoloft seems to have helped him maintain a more positive outlook and remain resilient, even when he has a hard day.

 

I'm sure you've heard the cautions regarding SSRIs and PANDAS kids, though: dosage needs to be low and slow or the kids may get activated, rather than helped. Also, you'll need to keep in mind that most SSRI's are anything but a "quick" answer; they can require 4 to 6 weeks to reach full efficacy, and you may not see ANY significant improvements in your DD for about 2 weeks or so.

 

All our kids are different, and I know that some have not had positive experiences with SSRI's. But our experience tells us that, for our DS, this is another tool in our PANDAS kit that helps him get back to his regular life.

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Have you tried ibuprofin? Many of us find it offers some relief for upticks of symptoms, as a temporary solution.

OH yes Ibuprofin is our best friend. I think it was you who told me about it back in the summer.. Thank You Thank You Thank you..

It has worked wonders.. Normally..

This summer and up until this weekend.. the Motrin has always stopped the symptoms no matter what symptom she seem to be haivng be is anixty, moodiness, sadness, or her sensory issues..

But this weekend Aniston was a mess.

She was trying very very hard also.. Her concellor and her had worked on copying stuff and her big thing is to distract herself with writing, drawling coloring(some of her favorite things)

this weekend she ended up writing a 15 page story and a picture to go along with all 15 pages.. fulling drawn and colored.. she worked on it everytime she was feeling scared or mad or sad... but saturday while she was trying to work on writing and coloring the symptoms got the best of her and she ended up not just crying but freaking out crying.. and knowing we were not close by seem to add to her stress and fear..

 

Her Pedi does not believe in the Motrin.. he thinks it works as a palcebo... I want to smack him upside the head LOL..

I know it works I have seen it work.. ONLY this weekend was the 1st time it didn't work(in the last 5 months that I have been useing it) according to the pedi the palcebo affect has worn off. yea yea whatever ...

 

He was ready to start her on zoloft yesterday.. I'm not.. she has an appt. with him on the 11th I told him I would think about it and let him know then..

 

I Think this weekend is a clear cut case of her being exposed to strep.. There are at least 2 known cases of strep in her school(small school 200 or less kids) both case are in my younger sons kindergarten class..

BUT her doctor doesn't think PANDAS symptoms come on just by being around someone who is sick or has strep..

I looked in dead in the eye yesterday and told him he was wrong.. because I have seen 1st hand over the last 6 month that when she starts having symptoms someone around her ends up sick with in about 2 to 3 days. I think he thinks I'm crazy for saying that.. but it has been the case with her since finding out she has PANDAS 6 months ago..

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Thank You Nancy

It is really comforting to hear that Zoloft has worked for your DS

I still don't know what I am going to do. But after reading your post, it gives me a little peace to know that If I do go with it, that someone out there has had a good experience with it..

 

Thanks

~Karen C~

I can only answer with our experience.

 

Our DS is taking both abx and low-dose Zoloft and, yes, it has helped him. We found that, even after a year of high-dose abx, he continued to struggle with OCD and some signs of depression . . . mostly castigating himself and taking minor setbacks very hard. The Zoloft seems to have helped him maintain a more positive outlook and remain resilient, even when he has a hard day.

 

I'm sure you've heard the cautions regarding SSRIs and PANDAS kids, though: dosage needs to be low and slow or the kids may get activated, rather than helped. Also, you'll need to keep in mind that most SSRI's are anything but a "quick" answer; they can require 4 to 6 weeks to reach full efficacy, and you may not see ANY significant improvements in your DD for about 2 weeks or so.

 

All our kids are different, and I know that some have not had positive experiences with SSRI's. But our experience tells us that, for our DS, this is another tool in our PANDAS kit that helps him get back to his regular life.

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I can only give my opinion...I'd try other things first. You can try anti-inflammatories, you can also give Omega 3's. Was her symptoms improving and then decline? What antibiotic is she on and for how long?

 

Also, as for kids worsening from exposure...antibiotics will not help with that unless an anti-inflammatory property of an antibiotic is helping. The increase would only help her from being infected, This is when it's important to remember that it's the antibodies that cause the PANDAS reaction. When she's exposed, the antibodies increase, waiting to fight a possible infection.

Edited by Vickie

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We tried Zoloft & it didn't help enough to warrant dealing with the side effects.

 

The initial dose of 25 mg did seem to help, though looking back I can't help but notice we started during the time of year that he normally starts to improve anyway.

 

We totally got sucked into the "if some helps, more must help more" mentality, even though we really couldn't decide if we were seeing improvement. By the time we got to 150 mg 11 months later, I realized that the Zoloft was actually causing the increase in tics, & sleeplessness, as well as manic talking & him writhing around being unable to sit still. And he'd gained 15 lbs in 6 months. At that point we decided that it hadn't helped all that much so we wanted to wean him off.

 

That was easier said than done. Don't let anyone tell you there aren't withdrawals because there certainly are. We had to go much more slowly than the usual weaning schedule the doctor gave us. He would get irritable, emotional, headaches, upset stomach & crazy zapping in his brain. We finally weaned him off completely 9 months later. He is still about 5 lbs above the ideal for his height (he was always right at the 50% mark for weight & height).

 

Since the original dose did seem to provide some improvement, we decided to see if a natural seratonin booster would also help. Since then we've been using 5-HTP (among several other supplements as well & Ibuprofen) with comparable results & no side effects that I can see. The continued use of abx has provided far more of a mood boost than either the zoloft of the 5-HTP have. We've also noticed that my son consistently gets worse each fall until it snows so we are assuming there is an allergy connection. The fact that Benadryl seems to reduce his tics quite a bit without making his sleepy seems to be pointing to that direction as well. I personally don't think the problem with our kids is low seratonin, it is inflammation & disrupted immune regulation & an SSRI doesn't fix that. But that doesn't mean that some PANDAS kids might not have low seratonin levels as well & benefit from one.

 

I'm certainly not going to advise you against trying it. But our experience was not great. My advice would be to go really slow & be very careful with dose increases. Make sure you are seeing positive benefits that are equal to the side effects it may be causing. If any behaviors worsen within a few days of a dose increase, lower the dose to the previous level & see if they reduce again.

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Yes her symptoms were improving(I would say 90% gone) and since school started has been declining.

We have been dealing with PANDAS symptoms and issues since Jan 2009 though we did not know that is what was going on at the time.

In Jan 2009 she had Mono and strep at the same time and that is when all this craziness started..

Her big thing was sensory issues everything touching her hurting her.. I thought it was the Mono.. it would get better then get worse then get better then get worse.. looking back I now know she was having all sorts of PANDAS symptoms at the time also but I didn't know what was going on with her moody, crying scared, freaking at at bedtime.. I didn't connect that with anything..

I mentioned it to her doctor from time to time, but didn't take her in until March 2010 when neither or nor I could deal with it anymore.

At the end of April 2010 she caught a strep infection and all heck broke lose with her she was basicly out of her mind in extream pain from the sensory stuff and I didn't know where the heck my little girl was inside of her..

 

At that point the pedi looked over her chart and called me and told me what was going on with her was PANDAS.

On May 1, 2010 She started Duricf 250mg 1 1/4 tesp every 12 hours and has been on that ever since.. so for the last 6 months

The improvement we saw was overnight.. with in the 1st 24 hours she wasn't a crazy person anymore, by the end of the 1st week, I had my normal child pretty much back and with in one month all her symptoms was about 90% gone..

June, July and Aug.. we had pretty much symptoms free days all summer long, When symptoms did come they were mild ones moodiness, sadness, Motrin seem to stop those dead in there track. Then school started and by the 2nd week of school every day has been a symptom day, most of them have been mild. but I am going though a bottle of children motrin a week with her..

The last two weeks things have gotten worse.. she has missed a day and a half of school because her symtoms kept her from being able to go.. the 1st day was the 1/2 day she was in a corner crying her eyes out and couldn't stop.. I couldn't send her to school like that.. So by lunch time when she was up and funtioning better she went back to school

The next day she was having symptoms I dosed her with Motrin and sent her on her way, teacher reported to me she was not herself at all, she wasn't mean or crying, she just wasn't talking.. She is a straight A student lots of friends and the 1st one to raise her hand to answer question and normally talking in every class discussion.. She has never brought home a paper of a grade of lower then 99% most of her papers come home with 102% or 104% on them.. That day her paper came home with a 79% on it and normally she is well for a lack of a better tearm a little OCD about the neatness of her work, that day her work looke awful, she didn't erase she scribbled out.. So you could tell even with the dose of Motrin while It let her funtion enough to go to school, she wasn't herself at all.

The next day she was back to crying her eyes out and majore mood swings all day long so I kept her home the whole day.

The next week(last week) had symptoms everyday but able to go to school and do Ok.. On Wed the school called me to let me know there was strep in the school(I could have told ya that just by the incress of symptoms) but Friday even though she was having symptoms the motrin was working, She spent the night at her BFF's house and was great, Saturday.. not so much like I said she was the worse we had seen her since strarting treatment for PANDAS... sunday whe was funtioning but still symptoms.. Monday mild symptoms, Today mild symptoms

Saturday the Motrin didn't help her, or maybe it did, maybe she would have been alot worse who knows.. but it didn't stop them or make them go away..

Today Motrin makes it go away again..

 

I don't know if I"m ready to start anything like zoloft just yet.. if everyday was like this weekend I think I would, but most days are mild symptoms.. I wish it was like summer where we had pretty much no symptoms..

I can only give my opinion...I'd try other things first. You can try anti-inflammatories, you can also give Omega 3's. Was her symptoms improving and then decline? What antibiotic is she on and for how long?

 

Also, as for kids worsening from exposure...antibiotics will not help with that unless an anti-inflammatory property of an antibiotic is helping. The increase would only help her from being infected, This is when it's important to remember that it's the antibodies that cause the PANDAS reaction. When she's exposed, the antibodies increase, waiting to fight a possible infection.

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Our ds was manic on zoloft. After 11 months and 75mg, I read Saving Sammy and he was correctly diagnosed and we took him off. Antibiotics and IVIG are what worked for us with an occasional (2-3x per month) dose of ibuprofen on really hard days. I'd look for another doc before messing around with zoloft.

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We totally got sucked into the "if some helps, more must help more" mentality, even though we really couldn't decide if we were seeing improvement. By the time we got to 150 mg 11 months later, I realized that the Zoloft was actually causing the increase in tics, & sleeplessness, as well as manic talking & him writhing around being unable to sit still. And he'd gained 15 lbs in 6 months. At that point we decided that it hadn't helped all that much so we wanted to wean him off.

 

I personally think this is the Number One Biggest Drawback with the use of these SSRIs, and probably not just with kids. Certainly it is wise to exhaust all other available options before moving to psychiatric medications in children. If anti-inflammatories and natural serontonin boosters like 5-HTP or inositol are capable of supporting your child while the abx does its major, primary work, then that's great. But for some, like my DS, those other remedies may not be sufficient. And then you have to reconsider your options.

 

But I know from our own experience, before hearing about and then fully embracing Dr. Murphy's study and advice, that even psychs who should know better will sometimes reach for a dosage increase too soon, out of impatience, and as a parent with a suffering child, it can be easy to get sucked into that, too. Well, if a little helps a little, then a little more will help a little more, and a lot will help a lot. But we know now that this is not the case, and that SSRIs can take an extended period to reach full efficacy (can be as much as 6 weeks), so reaching for more, and especially reaching for more too early and too fast, can bring you to that point where you're unknowingly and unintentionally overdosing your kid and therefore activating, rather than calming, them. Hence the "bad rap" for these drugs as a class in general, perhaps undeservedly, when it is really impatience behind the dosing and scheduling that deserves the negative press.

 

Just another opinion for the mix here.

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I'm sorry you're going through this, we haven't done any psych meds for my son, so I can't help there, but I can give you our experience on exposure - which has happened often to us.

 

Our pediatrician has absolutely told us that his symptoms would flare with exposure. He explained it like this - when the body is exposed to the bacteria, the immune system immediately mounts a response. The body may take 1-3 days before it shows a physical reaction to the infection it's fighting (rash, fever, sore throat, etc...). Strep is most contagious 1-3 days BEFORE the first symptom appears. Since it's the body's immune response to the bacteria (not the strep bacteria itself) that's causing the problem, they would show symptoms immediately, even before anything physical shows up. Our Dr. has us bringing in our son to get checked whenever we see a ramp of symptoms - before he gets sick. The last two strep infections this summer - he caught early b/c I brought him in the first time for having a freak out and being afraid of the rain (on a beautiful sunny day), and the second he had bitten 3 friends at school that day. One resulted in a postive throat swab, the second took a 72 hr to confirm. But both times, he didn't present sick until later in the day or the next day AFTER the doctor appointment.

 

Our son has been on varying doses of azith and now Omnicef since January. On the low dose of azith, he was exposed to strep 5 times before he actually caught strep 2x (which is why we changed to omnicef). With each exposure - his symptoms would come back instantly, and with full force. Violence is one of our big issues during exacerbation, and whenever he starts biting and attacking other kids, we know there's strep around. The funny thing is, with the exposures, symptoms typically start showing up 2-3 days before we know anyone in the classroom is sick. We're usually notified on day 3-4 of the flare up the someone had strep, and the severe symptoms typically haven't lasted more than a week during exposure (without change in abx, just using motrin, omega 3's and lots of patience to get through). It usually then takes another 2-3 weeks to get back to the baseline we were at before exposure. The good news, however, is that the time it takes to get back to baseline has been getting shorter and shorter every time, and even the "spike" in bad behaviors has lessened slightly the longer we're being treated (we use a form of Buster's tracking system to get a daily "Score" on how our symptoms were that help us identify these patterns).

 

I don't know if this will help you, but I thought I'd share our story ,and let you know we're here with you! Hang in there!

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I have not read all of the posts above but I will offer my opinion. You could not pay me enough to put my son on zoloft. In my mind that is an adult drug. Little kids, their brains are still developing. I would never add a drug like this to the mix. Remember, when you are visiting the doctor, it is just a guy, hearing your symptoms and wanting to find a solution. Any solution. Don't take what they say as an absolute truth. It is an opinion. Obviously, your pediatrician is not well read on PANDAS. Especially since Zoloft was his solution. In my opinion, putting a little 8 year old on Zoloft is not worth the risk. I can't tell you how many doctors have "suggested" drugs like Zoloft and anti-psychotics drugs for my child. Thank God I did not listen to them. Go with your gut. If you feel uneasy about Zoloft, it is for a reason. Mommy's intuition is usually right on. Sometimes I think doctors should be on anti-psychotics because their solutions are crazy. And by the way, my husband is a medical doctor. I hear first hand about the crazy doctors and the wonderful doctors.

 

Go to a PANDAS specialist. I would imagine long term antibiotics may help a lot more than zoloft.

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Thank you everyone for your help and words of advice.. My gut kept telling me zoloft was not the answer. So this morning I sent and email to Dr T. This was my 1st time contacting him in anyways, but I have read good things about him here. With in minutes of me hiting send, he was responding back to me telling me to call him right away and to NOT give her zoloft because it could make things worse.

I called him and he spoke with me for 30 minuts on the phone asking me questions and answering alot of mine. He was so very helpful.

I will be speaking her my daughters pedi here shortly about what Dr T had to say, and letting him know zoloft is not the way I will be going at this time.

 

I have not read all of the posts above but I will offer my opinion. You could not pay me enough to put my son on zoloft. In my mind that is an adult drug. Little kids, their brains are still developing. I would never add a drug like this to the mix. Remember, when you are visiting the doctor, it is just a guy, hearing your symptoms and wanting to find a solution. Any solution. Don't take what they say as an absolute truth. It is an opinion. Obviously, your pediatrician is not well read on PANDAS. Especially since Zoloft was his solution. In my opinion, putting a little 8 year old on Zoloft is not worth the risk. I can't tell you how many doctors have "suggested" drugs like Zoloft and anti-psychotics drugs for my child. Thank God I did not listen to them. Go with your gut. If you feel uneasy about Zoloft, it is for a reason. Mommy's intuition is usually right on. Sometimes I think doctors should be on anti-psychotics because their solutions are crazy. And by the way, my husband is a medical doctor. I hear first hand about the crazy doctors and the wonderful doctors.

 

Go to a PANDAS specialist. I would imagine long term antibiotics may help a lot more than zoloft.

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So, did you have a strep test done on her to see if she contracted strep at school? You would also need to remind (yes, you shouldn't have to remind doctors but that's our life)the doctor that even if she had strep, she can get a FALSE negative result if on antibiotics and he needs to let her behavaiors be his guide. I'd also probably call her friend's mom and ask if she's feeling okay.

 

Is it at all possible to just seek out a different doctor if you've hit such a road block with this one?

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No she has not be tested for Strep since before finding out what was going on with her was PANDAS. So her last strep test was April 30, 2010... After the post. rapid test that day, the next day was when her doctor told me he thought it was PANDAS.

She hasn't been sick sick since then.. Well had an ear infection over the summer on a weekend when I couldn't get her to the doctor.. that brought out her symptoms I took her to he ER when she was in pain from her ear, and the ER doctor changed her antibiotic for a week and her ear and symptoms cleared right up. then we went back on duricef.

Her doctor keeps telling me she will not get a strep infection while on the duricef, So I do not know if he will test her or not..

ON the plus side this morning was the 1st morning in week maybe two weeks that she woke up happy not moody and not showing symptoms. I gave her Motrin before she left for school just incase, figured that should help her the 8 hours at school and I'll see how she is doing when she gets home.

 

Also I have emailed Dr K and Dr T. They both sent me blood work ups that they feel she should have done. I forwarded everything to her pedi.. asking his thoughts and if he would be willing to work with either of them. I must have sent him 4 or 5 emails this morning.

He didn't email me back but he did have his office call me and tell me he wanted to talk face to face about what I have sent.

 

I do not know what to expect but I go in to meet with him tomorrow morning. I do not know if he will be accepting of what I did, or if he will be upset, or if he will end up disagreeing with them..

 

i just don't know.. But both Dr K and Dr T are willing to see my dd and Dr T already said after the blood work and a phone consalt he would be willing to be her PANDAS doctor.

 

I don't know how well that works with him in NJ and me in OH..

 

I would like to keep her pedi(he has been my kids doctor since my 1st was born just about 15 years ago) but I need him willing to treat PANDAS along with the PANDAS doctors or atleast listen to what they are saying about PANDAS and not say "I don't believe that"

 

I think he is a good doctor and a very smart man, I think he cares about my dd, and wants to do what is best for her.. I just think when it comes to PANDAS he just isn't informed enough..

If he is willing to become informed that would be wonderful.. If not I will have to do what is best for my daughter.

 

So, did you have a strep test done on her to see if she contracted strep at school? You would also need to remind (yes, you shouldn't have to remind doctors but that's our life)the doctor that even if she had strep, she can get a FALSE negative result if on antibiotics and he needs to let her behavaiors be his guide. I'd also probably call her friend's mom and ask if she's feeling okay.

 

Is it at all possible to just seek out a different doctor if you've hit such a road block with this one?

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