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We've been waxing and waning PANDAS/PANS symptoms for over 2 years. Things have been much better this year. In November 2014 DD6 took a couple of days of school with high fever and a 'sandpaper' texture rash over her neck. The rash was skin coloured and easy to miss, but was very fine and felt rough to the touch. I thought this was strep, despite being on prophylaxis for 18 months. I got a throat swab and it was negative. Doctor felt it was a viral rash. I decided not to increase the abx to treatment dose on this occasion.

 

Fast forward 4 weeks and DD's (very minor) stutter suddenly ramped up. It has been 6 weeks of stuttering and now it seems to be getting even worse. Jaw tremors, real struggles and, for the first time, DD has noticed it herself and is complaining that she can't get words out. It is heartbreaking to see her struggle to talk when her speech has always been relatively fluent. Other minor things I have noticed this past month is constant hair-chewing and a preoccupation with people's ages - lots of repetitive questioning regarding people's age. How old do you think the news reader is on the radio? That means he/she is 'x' years younger/older than me...... When I was 2 he/she was only 'x' years....etc. etc. (you get my drift!). Her general mood hasn't been too bad but DH and I are looking at private speech therapy as we are scared this could get really severe and permanent. The county's speech therapist has a very long waiting list but school have put her forward at my request.

 

Is this a PANDAS symptom? I'm thinking (and hoping) it is and only temporary. Can others relate?

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Hi-

 

If you are asking: is the repetitive questions over and over again, and seemingly fixated on a topic/ and asking reassurance questions over and over is

PANDAS/ PANS/ OCD,

 

my answer is YES. Can I relate? YES.

A recent addition of the antibiotic Augmentin 2x a day

has made this particular OCD issue 85% gone.

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My kiddo and a few others I have heard of are affected through their speech as well as other symptoms. My daughter has had selective mutism or simply whispered since onset (3 + years).

 

Another patient I met at kiddo's doctor's office (female, 17)abruptly began uncontrollably speaking in a high pitched, unintelligible, baby like voice. She had to write to communicate. Kiddo's doc says he has a handful of patients whose speech is affected.

Edited by mayzoo
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sorry to hear the increase in symptoms despite prophylaxis and good run of remission.

 

I'm with you -- it is heartbreaking to have a downslide after good times. ds10 had about 2.5 years of remission (despite school issues due to learning issues but good health) and slide this fall with Lyme in Sept and strep in Dec.

 

just curious, what were you doing for prophylaxis? have you left it at that level, or increased to treatment level?

 

I think the age thing very much sounds like PANS-related OCD. my ds was doing something along the same lines with obsessive thoughts about rock bands -- "who is in the band? are they still alive? how old are they? what age were they when they died? how old were they when the band broke up? how old were you when you first saw U2?" music and his favorite bands is something that he is interested in, but it was to an obsessive level.

 

it did subside with antibiotic treatment.

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My son's main symptom when he experiences flares is stuttering--his tends toward "cluttering" (excessive revisions of phrases, pauses in odd places, breathing or swallowing mid sentence, etc.). I'm a speech pathologist, and actually took him to see a stuttering specialist (I did not trust myself to be impartial as his mom!). He received therapy for 2 months, then was dismissed because his speech cleared completely. It stayed clear for 6 months, when he got impetigo and scarlet fever, then had his worse flare ever--cluttering and stuttering combined, arm flapping, excessive questions about size, fears, baby talk. He still hadn't been diagnosed at this point, so just had a 10 day course of amoxicillin, which didn't help his extraneous symptoms much, but did clear up the rash. He had flare symptoms for 4 months, then all clear again.

 

I hope for your daughter, like my son, that the stuttering is merely a symptom and will clear when her flare subsides. In the meantime, I'd be happy to share some advice about stuttering, if you'd like to send me a message!

 

I also refer to this article, and have been sharing it with fellow speech therapists. Obviously, PANDAS is not the sole cause of stuttering (there are many, and research is continuing all the time), but I feel that it is worth knowing and that speech therapists should recognize this as a possible sign for a referral if they see a client with stuttering combined with other tics or OCD symptoms and/or a history of strep. https://www.aacp.com/pdf%2F1110%2F1110ACP_Letters_Agarwal.pdf

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When my daughter was about 6, she began to stutter, chew her hair, and chew her sleeve. We ignored it all, and it went away within a few months when she healed from pandas flare up.

 

She has had additional flare ups, none of these symptoms returned.

 

We have noticed, in times of pandas flare ups, that gum can be a mood lifter!

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We've been waxing and waning PANDAS/PANS symptoms for over 2 years. Things have been much better this year. In November 2014 DD6 took a couple of days of school with high fever and a 'sandpaper' texture rash over her neck. The rash was skin coloured and easy to miss, but was very fine and felt rough to the touch. I thought this was strep, despite being on prophylaxis for 18 months. I got a throat swab and it was negative. Doctor felt it was a viral rash. I decided not to increase the abx to treatment dose on this occasion.

 

Fast forward 4 weeks and DD's (very minor) stutter suddenly ramped up. It has been 6 weeks of stuttering and now it seems to be getting even worse. Jaw tremors, real struggles and, for the first time, DD has noticed it herself and is complaining that she can't get words out. It is heartbreaking to see her struggle to talk when her speech has always been relatively fluent. Other minor things I have noticed this past month is constant hair-chewing and a preoccupation with people's ages - lots of repetitive questioning regarding people's age. How old do you think the news reader is on the radio? That means he/she is 'x' years younger/older than me...... When I was 2 he/she was only 'x' years....etc. etc. (you get my drift!). Her general mood hasn't been too bad but DH and I are looking at private speech therapy as we are scared this could get really severe and permanent. The county's speech therapist has a very long waiting list but school have put her forward at my request.

 

Is this a PANDAS symptom? I'm thinking (and hoping) it is and only temporary. Can others relate?

My son has problems when flaring with words as well. Struggles to get words and sentences. It is very scary and odd to watch. I know of another PANS child that suffers from the same symptom. Our DS is 11 and very bright communicator most times. :)

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