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We have my DF daughter every other weekend and half of hoildays

 

The last 2 to 3 times we have had her we have noticed that she was shaking her head and then arms then kissing her teeth and then blowing raspberrys and more and more things

 

She does it throughout the day and it was upsetting us seeing her do this So we asked her and she said 'Its someone in my head telling me to' so we told her to tell them to go away and that you can stop then Since then i have lloked up head shaking in kids and found this website

 

We told her mum and nan who said that they know about it but had not said anything to us about it or done anything about her tics

 

 

She has just got over a water infection which she had un treated for a week then on meds for 2 wks then she got a thoat infection which was not treated until she had it a few days which she was on meds for just over a week

 

Since she has had all this infections the tics have appered from no where

Her nan/mum seem to think her tics are caused by stress (mum and dad not with each other no more) but i think it might be because of these infections

 

Her thoat infection i caught after 3 days of being around her and still have a bad thoat now and thats going into 3 wks since i got a sore thoat

 

Any ideas on what needs to be done so i can tell nan/mum as much info as poss and they really dont seem that bothered about the whole thing

 

My DF daugther is 8 years old

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Welcome.

 

Did she have any symptoms of the throat infection when you took her in? She may have had it for a lot longer than you think.

 

How long ago did you catch the strep and what antibiotics was she put on? All family members should get tested too, even if they do not symptoms of strep. This will help prevent reinfection of your daughter and exposure alone can worsen symptoms. After finishin the prescription, a follow up strep test should be performed 3 weeks later if rapid is negative, run a culture,

 

Here is some "starter info" for you to look at. If you feel you need more studies/articles to pass on, I can post that as well. I think what needs to be said to them is that your little girl can worsen if this isn't dealt with. More problems in addition to tics can arrise. Avoidance will not make it go away.

 

 

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

Edited by Vickie
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NAT - It is good that you found this forum. Vikie is giving you good advice to not ignore this and to get all family members tested for strep. I may have misread your post, but it sounded like you have had a sore throat yourself for 3 weeks now. It is important that you get that checked and cultured, and start on antibiotics yourself if it is strep - if you haven't already.

 

I don't know if your DF daughter's mum and nan would prefer videos, but here are a couple of videos about kids with PANDAS.All kids with PANDAS are different, but these are 3 kids that were able to get halp from good doctors.

 

 

Bella: http://titancast.titantv.com/p/wcbi/s/WCBI-News--5-Part-2-81910/12GI1ZP6.aspx

 

Sammy:

 

Lauren: http://today.msnbc.msn.com/id/35814608

 

Best wishes -

Edited by kimballot
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Welcome.

 

Did she have any symptoms of the throat infection when you took her in? She may have had it for a lot longer than you think.

 

How long ago did you catch the strep and what antibiotics was she put on? All family members should get tested too, even if they do not symptoms of strep. This will help prevent reinfection of your daughter and exposure alone can worsen symptoms. After finishin the prescription, a follow up strep test should be performed 3 weeks later if rapid is negative, run a culture,

 

Here is some "starter info" for you to look at. If you feel you need more studies/articles to pass onto the mom, I can post that as well. I think what needs to be said to them is that your little girl can worsen if this isn't dealt with. More problems in addition to tics can arrise. Avoidance will not make it go away.

 

 

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

[/quote

 

When my DF picked her up on the 22 oct we was told to pick up some meds for her was never told what was wrong but the child said her thoat hurt I also noticed she has white spots in her mouth.I think she was on penillin (sp) 1 spoon 4 times a day until bottle had finished.On this vist she had only just started doing head shaking and arm shaking

 

When we picked her up on the 5th Nov her tics were 100% worst head/arm shaking jumping around,putting her hand in front of her face then the other one etc and kissing her teeth and blowing raspberries.

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NAT - It is good that you found this forum. Vikie is giving you good advice to not ignore this and to get all family members tested for strep. I may have misread your post, but it sounded like you have had a sore throat yourself for 3 weeks now. It is important that you get that checked and cultured, and start on antibiotics yourself if it is strep - if you haven't already.

 

I don't know if your DF daughter's mum and nan would prefer videos, but here are a couple of videos about kids with PANDAS.All kids with PANDAS are different, but these are 3 kids that were able to get halp from good doctors.

 

 

Bella: http://titancast.titantv.com/p/wcbi/s/WCBI-News--5-Part-2-81910/12GI1ZP6.aspx

 

Sammy:

 

Lauren: http://today.msnbc.msn.com/id/35814608

 

Best wishes -

 

 

Yes i have had a sore thoat 2 days after having DF i got a sore thoat which was 24th oct and it wont go away I have not taken anything as i am preggers and we did not know at the time that was this child could have could be this I thought i just had a cold

What blood test is needed?

I just had my 28 wks blodd test done on mon fbc will this show anything ?

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Unfortunately, penicillin and amoxicillin has a high failure rate in clearing strep throat.

 

http://www.entrepreneur.com/tradejournals/article/169459644.html

 

Since she's been off antibiotics for only a week, she could run a FALSE negative strep test right now. If you want to take her in for a follow up now since her tics are worse, you can do so and remind them of whne she finished meds or tell the doctor you don't believe the penicillin cleared it and ask for something like Augmentin or Zithromax to clear it. You do run the chance of a false negative strep test if you are on antibiotics or up to 3 weeks after taking antibiotics. That's why many will suggest waiting the 3 weeks to retest. however, if her tics are worsening, I wouldn't wait. 3 weeks w/o meds for strep for a possible PANDAS child isn't good. She can just continue to worsen.

Edited by Vickie
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NAT - If you have had a sore throat for 3 weeks than you should be seeing a doctor yourself. Be sure the doctor knows you are pregnant so you can do what is best for your baby.

 

I tryed to get into the doctors 2night but no joy

Will try again 2morrow

 

Am i at risk ?

 

And what do i say to the doctor other then i have a sore throat and i am pregnant ? what do i need to ask/tell him ?

Edited by NAT
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I just say my throat has been hurting and my child has strep. They'll give you a strep test. But you may have to ssk them to run a culture if the rapid is negative. Each adult office is different whether they automatically culture on adults. My husband's rapid has come back negative, just to have culture come back positive. Defintely culture it, if rapid is negative.

Edited by Vickie
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Hi NAT,

By what you tell us the girl probably had strep throat and passed it on to you (it is transmitted through dropplets so it's very important that everyone washes hands, no sharing cups, etc).

If you can't get to your doctor soon enough (although if you tell them you think you have strep, they should see you pretty quickly), you can always try the MinuteClinic at CVS. There are many antibiotics that are safe while you are pregnant, and it is better to treat it than to do nothing. So do get checked out, and if there is anyone else in the household/family, they should get checked too. Otherwise you guys will just keep passing it around. Some people can have it without any symptoms at all, that's why you need to check everyone in the house, especially since you've had it this long.

If you catch it and treat it, strep is not dangerous, but untreated it can cause serious problems (like in your DF's daughter!), so it needs to be taken seriously. It would also be a good idea to check the girl again to make sure she has indeed cleared it. It's happen to my family a lot that even after taking the antibiotics, they still have it. They may have to put her on antibiotics again if she still has it. And make sure she takes it exactly as prescribed (usually for at least 10 days). Sometimes they have to try with different/stronger antibiotics if the first one didn't do the trick.

Where do you live? Maybe someone here as a recommendation for a local PANDAS doctor.

If you have any other questions, please keep asking.

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Hi NAT,

By what you tell us the girl probably had strep throat and passed it on to you (it is transmitted through dropplets so it's very important that everyone washes hands, no sharing cups, etc).

If you can't get to your doctor soon enough (although if you tell them you think you have strep, they should see you pretty quickly), you can always try the MinuteClinic at CVS. There are many antibiotics that are safe while you are pregnant, and it is better to treat it than to do nothing. So do get checked out, and if there is anyone else in the household/family, they should get checked too. Otherwise you guys will just keep passing it around. Some people can have it without any symptoms at all, that's why you need to check everyone in the house, especially since you've had it this long.

If you catch it and treat it, strep is not dangerous, but untreated it can cause serious problems (like in your DF's daughter!), so it needs to be taken seriously. It would also be a good idea to check the girl again to make sure she has indeed cleared it. It's happen to my family a lot that even after taking the antibiotics, they still have it. They may have to put her on antibiotics again if she still has it. And make sure she takes it exactly as prescribed (usually for at least 10 days). Sometimes they have to try with different/stronger antibiotics if the first one didn't do the trick.

Where do you live? Maybe someone here as a recommendation for a local PANDAS doctor.

If you have any other questions, please keep asking.

 

Hi Thanks for your info i live in kent Uk It would be great if anyone knows of any local PANDAS doctors

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Hi - the only name that I have been able to come up with for the UK (we are from UK but living in the USA and when we thought we may be moving back we hunted around for a PANDAS dr) is this chap at Barts in London...

 

http://www.bartsandthelondon.nhs.uk/forgps/handbook/consultant.asp?cid=454&tt=2&sid=32&pid=7687

 

others may be able to give you names or you could try a Lyme Literate Medical Doctor (LLMD) aa an alternative. A LLMD should take you seriously and not blow you off and they don't just deal with Lyme. There's a good one in Hemel Hempstead that is recommended by the organistation ILADS. I'll see if I can find it and PM you their info.

 

Good luck...

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  • 2 weeks later...

Well after 2 wks of asking what is being done about my DF daugther and her tics that have come from no where we got a email from them saying

@had meeting and spoken with CAMHS woman yesterday with regards to concerns about ........., now just being decided on what route to take with .......mental health (pyschatrist) and/or paediartrician before proceeding any further. We should know what course of action they have decided to take within the next couple of weeks.'

 

This has taken 6 wks to get them to do anything but why can there just not take her to the doctors and get a blood test done

 

The have it in their heads that the tics have been brought on by stress !!!!!!!!!!!!!!!!!!! was and wont have it anyway

I done a video of the child and showed it to someone who has a older child who had tics bad when they were a kid and she was 100% sure it pandnas/ts

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Well after 2 wks of asking what is being done about my DF daugther and her tics that have come from no where we got a email from them saying

@had meeting and spoken with CAMHS woman yesterday with regards to concerns about ........., now just being decided on what route to take with .......mental health (pyschatrist) and/or paediartrician before proceeding any further. We should know what course of action they have decided to take within the next couple of weeks.'

 

This has taken 6 wks to get them to do anything but why can there just not take her to the doctors and get a blood test done

 

The have it in their heads that the tics have been brought on by stress !!!!!!!!!!!!!!!!!!! was and wont have it anyway

I done a video of the child and showed it to someone who has a older child who had tics bad when they were a kid and she was 100% sure it pandnas/ts

Well, most people, including doctors have never heard of PANDAS and it sounds kind of "out there" since strep is such a common infection. I remember before knowing about PANDAS, everybody, myself included, having theories about why a new behavior had come about...stress is a very common one. And you know- life always presents w/ so many changes and adjustments, there is always something happening that you can blame it on. I hope you are able to influence your friend and get this girl some appropriate treatment!

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