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I just stumbled upon you guys and have been reading this forum since I found you -- with relief and with angst.

 

My son was diagnosed with PANDAS by neurologist Dr. Elizabeth Latimer (Bethesda, MD) in the fall of 2006. During a trip abroad he woke up one morning shrugging his shoulders. After cutting all the tags out of his shirts, changing laundry detergent and telling him to knock it off (about 1000 times) we took him to our pediatrician. He said this was out of his league, did a throat culture (negative) and blood work then sent us on to Dr. Latimer. Based on his titers and her neuro evaluation she said it was PANDAs. Something I had never heard of. We started him on a course of antibiotics and within days the tic was gone. Through the spring of 2007 we put him on and off the antibiotics when the tic would reemerge. Each time the antibiotics would clear it up. In the mean time we took him to the allergist to see if there was an allergy trigger. Good news, not a single allergy. She did an MRI of his head and saw a sinus infection. We had hope that maybe the strep was hiding out in there. More antibiotics.

 

Starting in the fall of 2007 he was on and off the antibiotics so regularly that we started a prophylaxis dose of amoxicillin which seemed to control the tic until the spring of 2008 when he started to tic through the meds. Of course at this time we 1.)moved and 2.)lost our pediatrician in a car accident. I felt like my whole basis of knowledge about my son was gone. We found a new doctor in Colorado, met with him, did blood work and referred us to an ENT at Children's here in Denver. ENT drew blood, reviewed history (including not a single positive throat culture EVER), MRI (felt there never was a sinus infection) and wanted to do another throat culture since he felt that a lot of times peds don't culture in the right place. Well, true to form the titers were high and the throat was negative. He advised removing tonsils. We did that in July 2008 and had high hopes that this could be the answer.

 

Well it wasn't. Here we are, back again with a humming, ADD, anxious child who can't stop with the tic. I took him back in to the ped last Friday for a repeat blood draw and again he has high titers. We put him on antibiotics to help with the tic and attention (really impacts him at school) with a referral to a neurologist here in Denver.

 

I can give you more detail if needed but I am not sure really what to do from here. We will see the neurologist but do you think we should see an infectious disease person to see if he has strep hiding out somewhere? He actually is rarely sick. Before getting the tic he doesn't present with a cold or a sore throat or anything to tell us that he is "sick." Rather he just wakes up a different child one morning. While the antibiotics (amoxicillin) usually works for him this time we have to change it because it just isn't knocking it out.

 

Has anyone had a child where they can't find the strep? Does that really matter?

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I am sorry to hear about your son. I am glad you found someone who could help and was knowledgable on PANDAS. My thoughts are that maybe you should not worry so much about the infectious disease guy and just focus on someone who treats PANDAS. I have been the ID route with someone who was supposed to be "the best", and they acted like I was crazy. The trick is to find a physician who has the knowledge and a treatment plan and can get you on the right path. There are several different antibiotics that could work for your son. Just because one stopped working doesn't mean there isn't something better that will help. There are different options available to you now. You need to be get information on them all, by physicians who specialize in PANDAS, and make an informed decision. Good luck.

 

Dedee

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Hello, My only suggestion is to find a good DAN Dr. They can run tests on your son and try to get to the root of what is wrong...Have they ever run a PANDAS panel?I've felt in my sons case I needed both the expertise of the DAN Dr and the traditional Dr. Good Luck,Sarah

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Yes, strep can "hide out" in sinuses...throat culture can be neg. Strep can also be skin or perianal.

 

This thread might be useful...

http://www.latitudes.org/forums/index.php?...art=#entry26703

 

Several on this board have found sucess with Azithromycin (when Amoxicillin doesn't cut it anymore). You may need to do more than just 5 days. I would consider a 30 day day trial to see if there is any improvement. My PANDAS dd has been on Azith. 250mg/day since June.

 

Azith. gets intracellular strep and is immune modulating.

 

Interesting about the tonsils...it seems for those that go that route it is a temporary fix at best.

 

Our ped. mentioned getting our younger dd's tonsils out. Younger dd is a strep carrier (often cultures positive, no fever, no sore throat) and when she is positive our older (PANDAS) dd gets mild symptoms (tantrums, fine motor tremors) even though PANDAS dd is on abs. My concern is that it wouldn't actually prevent younger dd from getting/carrying strep, that it would just make her harder to culture! Plus it seems like an extreme measure...makes more sense to do IVIG in older (PANDAS) dd first?

 

Dr. K (Chicago) has a webiste that may be useful... http://webpediatrics.com/pandas.html . Several people on this forum have done IVIG with him.

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Dear Gibster,

 

That your son is having ANY cessation with abx is good hope he DOES have PANDAS. Many of the kids (including my son - now "cured" I believe) - present with sinusitis - I'd say about 40% of the 30 or so families I've talked with. Including my son.

 

The good news is: Augmenting or Azithro or Keflex - more and broad based - and usually effective with PANDAS kids like yours.

PANDAS is an autoimmune reaction - arresting that reaction is your goal. Ultimately, I chose to do IVIG for my son because he was so debilitated (OCD, anxiety, Tourette-like motions and sounds). I don't know that it would be everyone's choice - but I had no other.

 

I'm helping YALE get together a trial for IVIG w/PANDAS kids that you may be interested in - or ponder - will occur in July (that's the goal).

 

I could connect you to some other mom's that have PANDAS w/Tic exacerbations (vs. ocd stuff) - and maybe you all could commiserate? I will email you my personal address. Hang in there. diana

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Thank you all! We switched him to Azith yesterday and have an appointment next Friday with a neurologist. So I guess we will go from there but I will definitely discuss the longer course of antibiotics. Do you usually keep them on just through strep season or is that all year.

 

We have had the other 3 kids and ourselves checked and no one seems to be a carrier. The only time any of the kids has actually had strep is on case of the baby with anal strep and then once my dd had actual strep throat but other than that we haven't gotten any positives in the family.

 

Looking back -- I would have skipped getting the tonsils out. He had a horrible recovery and it was hard on him. Now we are at the same place so not really sure it was all worth it.

 

Diana I got your message will shoot you my e-mail.

 

Thanks again.

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Yes, strep can "hide out" in sinuses...throat culture can be neg. Strep can also be skin or perianal.

 

This thread might be useful...

http://www.latitudes.org/forums/index.php?...art=#entry26703

 

Several on this board have found sucess with Azithromycin (when Amoxicillin doesn't cut it anymore). You may need to do more than just 5 days. I would consider a 30 day day trial to see if there is any improvement. My PANDAS dd has been on Azith. 250mg/day since June.

 

Azith. gets intracellular strep and is immune modulating.

 

Interesting about the tonsils...it seems for those that go that route it is a temporary fix at best.

 

Our ped. mentioned getting our younger dd's tonsils out. Younger dd is a strep carrier (often cultures positive, no fever, no sore throat) and when she is positive our older (PANDAS) dd gets mild symptoms (tantrums, fine motor tremors) even though PANDAS dd is on abs. My concern is that it wouldn't actually prevent younger dd from getting/carrying strep, that it would just make her harder to culture! Plus it seems like an extreme measure...makes more sense to do IVIG in older (PANDAS) dd first?

 

Dr. K (Chicago) has a webiste that may be useful... http://webpediatrics.com/pandas.html . Several people on this forum have done IVIG with him.

 

 

I see from your post that the zith is really working for you and some other parents have said the same, but yet, we are experiencing a lot of problems with it that I've also read on here from some parents. Am kind of at a loss about which abx to turn to next. This is the second time we've tried zith (the first time was the liquid pink form) we went to a white pill this time, thinking that the angry, aggressive outbursts were due to the pink dye, but even with this other form she started having this aggression within one day of taking it. Wonder why it affects some kids like that and yet others do well with it? Anyway, she was on augmentin for 3 months and I wanted to take her off because another doc said it causes high ammonia levels and increased brain swelling. Not sure what to do about abx now.

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Hi Gibster...

 

we're doing all year round.

 

Our dd's PANDAS episode last spring was horrific (psychotic behavior, anorexia nervosa with 6 days in hosp.)...tried 3 different abs (Augmentin, Amoxicillin, a Cephalosporin) before we got things under control with Azith. ...so we're not willing to risk another episode.

 

Also, several on this board have had kids with strep in the summer.

 

With Azith...dd's mood (yelling at us less) improved in 5 days, OCD in 10days, anorexia nervosa gone in 14 days, took about 6 weeks for "tics" and "movements" to completely disappear.....this is why I feel it is important to do at least 30 days to see if there is any difference with the Azith. (I don't think all of these PANDAS kids have "normal" immune systems that fight off the strep like it should.)

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Hi Gibster...

 

we're doing all year round.

 

Our dd's PANDAS episode last spring was horrific (psychotic behavior, anorexia nervosa with 6 days in hosp.)...tried 3 different abs (Augmentin, Amoxicillin, a Cephalosporin) before we got things under control with Azith. ...so we're not willing to risk another episode.

 

Also, several on this board have had kids with strep in the summer.

 

With Azith...dd's mood (yelling at us less) improved in 5 days, OCD in 10days, anorexia nervosa gone in 14 days, took about 6 weeks for "tics" and "movements" to completely disappear.....this is why I feel it is important to do at least 30 days to see if there is any difference with the Azith. (I don't think all of these PANDAS kids have "normal" immune systems that fight off the strep like it should.)

 

 

Hi EAMom,

Are you doing Azith. half dose or "full" strength right now?

Thanks--

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Dd is on 250mg/day. I believe this is "full strength". She is about 55 pounds/ 8.5 years now. (Got down to 42 pounds last spring thanks to PANDAS anorexia nervosa.)

 

In the Swedo Azith/Pen study I believe kids of her size got 500mg/week...they had less exacerbations but they still had some symptoms. Maybe they would have done better at a higher dose?

 

My dd has relatively mild symptoms when her sister (2x so far this fall) tests positive for strep. Her sister (Kindergarten) is a strep carrier (no sore throat or fever but will culture positive.) I have heard of other PANDAS kids doing this, reacting to strep even though they're on abs. However, the abs certainly help. Her mood is good, eats well. The "mild symptoms" we've seen on abs have been fine motor tremors and occ. tantrums, also some OCD (compulsion) movements, some tics. Nothing horrible.

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  • 2 weeks later...

Just wanted to update you guys post neurologist appointment. Well, after getting a PANDAs diagnosis easily 2+ years ago we ran into a neurologist who said "I don't believe in PANDAs." Tad shocked, tad disheartened BUT she was really good at evaluating my son. She spent a lot of time with us going through the whole history and what has worked/hasn't worked in the past. In addition, after having him on azith, his symptoms were only getting worse.

 

She she wants to take a new approach with clonidine, heart ultrasound (to rule out the strep there) and treating the tic/separation anxiety/attention issues rather than trying to get rid of the strep.

 

We are not 100% sure that this is the right approach. What we are sure of is that the tic is affecting him emotionally and socially so we have to do something now. So we are starting him on the clonidine, praying for a miracle but keeping our options open.

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Hi, Yes I understand how you feel, You want to get at the root of the problem but also you have to have your kid function and you can't wait forever for this...I struggle with this constantly..

Please be open minded when you see these doctors and do your own research. I've listened to too many who told me they had the answers and they were wrong..listen to your gut...good luck, Sarah

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Hi Gibster,

I was wondering if you could comment more on the doctor wanting to get an ultrasound on your child's heart to look for strep. There have been many times I KNOW my children had strep, but thoat cultures were negative. I have always thought that the strep could be hiding in their adenoids or sinuses, but never heard of it being in their heart. Is this in relation to how strep antibodies attack the cardiac valves such as with rheumatic fever? Anything you could add about that I would REALLY appreciate as I am constantly trying to find liitle pieces to this very confusing disorder, as we all are. Thanks!

Colleen

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We were at the psychiatrist today. She said they have to treat the symptoms seperately as you are saying. My son also has the tics that affect his emotions and attention, along with his hands and feet. We are currently on Abilify 5Mg AM and 2.5 PM. He is much less anxious so the tics are reduced, then he was on the 5Mg only. However he still gets angry and overreacts and has a few toe/finger tics. She is going to try him on 5Mg AM and 5Mg PM. He struggles with focus and lags in school work so I think we are also going to try the stimulant route (like Adderall XR) on the lowest dose to see if he can do better with following directions, organization and attention. I know many here hate the words psych meds but this strep is in their brains. If they are having behavior/emotional issues from the brain/strep inflammation what else can we do? I am tired of seeing him miserable because of this. We are also praying for a miracle. Blessings.

 

Michele

Just wanted to update you guys post neurologist appointment. Well, after getting a PANDAs diagnosis easily 2+ years ago we ran into a neurologist who said "I don't believe in PANDAs." Tad shocked, tad disheartened BUT she was really good at evaluating my son. She spent a lot of time with us going through the whole history and what has worked/hasn't worked in the past. In addition, after having him on azith, his symptoms were only getting worse.

 

She she wants to take a new approach with clonidine, heart ultrasound (to rule out the strep there) and treating the tic/separation anxiety/attention issues rather than trying to get rid of the strep.

 

We are not 100% sure that this is the right approach. What we are sure of is that the tic is affecting him emotionally and socially so we have to do something now. So we are starting him on the clonidine, praying for a miracle but keeping our options open.

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