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Reserved still but excited none the less


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I am still reserved, but excited because I am seeing minor improvements already in DD. She is eating more with less issues and actually asking for food (sometimes does not eat it, but asking is an improvement). She let me kiss her head without telling me not to touch her. She is hollering a bit less at nights and mornings. I got to go to the bathroom alone twice yesterday LOL. I also went to the garage without a shadow, and outside to care for the livestock without her fretting while I was gone (I snuck peeks in the windows and listened for hollering). She also just asked me to sit beside her a few minutes ago :D , she has been telling me to get away from her for weeks.

 

After a positive throat culture, she was started on Amoxicillin 500mg am and pm on 1-5 and I have been giving Ibuprofen twice a day also. We are still waiting on blood work, but I feel good about the gains so far.

 

:D :D :D :D :D :D :D :D :D

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I am still reserved, but excited because I am seeing minor improvements already in DD. She is eating more with less issues and actually asking for food (sometimes does not eat it, but asking is an improvement). She let me kiss her head without telling me not to touch her. She is hollering a bit less at nights and mornings. I got to go to the bathroom alone twice yesterday LOL. I also went to the garage without a shadow, and outside to care for the livestock without her fretting while I was gone (I snuck peeks in the windows and listened for hollering). She also just asked me to sit beside her a few minutes ago :D , she has been telling me to get away from her for weeks.

 

After a positive throat culture, she was started on Amoxicillin 500mg am and pm on 1-5 and I have been giving Ibuprofen twice a day also. We are still waiting on blood work, but I feel good about the gains so far.

 

:D :D :D :D :D :D :D :D :D

 

 

I am SOOOO happy for you. Was this a sudden onset, and you found a dr. immediately who recognized it?

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I am still reserved, but excited because I am seeing minor improvements already in DD. She is eating more with less issues and actually asking for food (sometimes does not eat it, but asking is an improvement). She let me kiss her head without telling me not to touch her. She is hollering a bit less at nights and mornings. I got to go to the bathroom alone twice yesterday LOL. I also went to the garage without a shadow, and outside to care for the livestock without her fretting while I was gone (I snuck peeks in the windows and listened for hollering). She also just asked me to sit beside her a few minutes ago :D , she has been telling me to get away from her for weeks.

 

After a positive throat culture, she was started on Amoxicillin 500mg am and pm on 1-5 and I have been giving Ibuprofen twice a day also. We are still waiting on blood work, but I feel good about the gains so far.

 

:D :D :D :D :D :D :D :D :D

 

 

I am SOOOO happy for you. Was this a sudden onset, and you found a dr. immediately who recognized it?

 

Yes overnight onset right during a sore throat and low grade fever episode three and one-half months ago 09-12-2011. I found all the information on the web about PANDAS and took it to her old pedis office and they were agreeable to learning more about this and doing the blood work. I lucked out in one way since the Nurse practitioner we actually saw has an autistic son and she did not cringed when I told her I found something that seems to fit on the internet. I had been going through her Neurologist because of her other conditions, but I suspect he thinks I am nuts and I know he feels all her symptoms are "behavioural".

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I am still reserved, but excited because I am seeing minor improvements already in DD. She is eating more with less issues and actually asking for food (sometimes does not eat it, but asking is an improvement). She let me kiss her head without telling me not to touch her. She is hollering a bit less at nights and mornings. I got to go to the bathroom alone twice yesterday LOL. I also went to the garage without a shadow, and outside to care for the livestock without her fretting while I was gone (I snuck peeks in the windows and listened for hollering). She also just asked me to sit beside her a few minutes ago :D , she has been telling me to get away from her for weeks.

 

After a positive throat culture, she was started on Amoxicillin 500mg am and pm on 1-5 and I have been giving Ibuprofen twice a day also. We are still waiting on blood work, but I feel good about the gains so far.

 

:D :D :D :D :D :D :D :D :D

 

 

I am SOOOO happy for you. Was this a sudden onset, and you found a dr. immediately who recognized it?

 

Yes overnight onset right during a sore throat and low grade fever episode three and one-half months ago 09-12-2011. I found all the information on the web about PANDAS and took it to her old pedis office and they were agreeable to learning more about this and doing the blood work. I lucked out in one way since the Nurse practitioner we actually saw has an autistic son and she did not cringed when I told her I found something that seems to fit on the internet. I had been going through her Neurologist because of her other conditions, but I suspect he thinks I am nuts and I know he feels all her symptoms are "behavioural".

 

Well, I am really glad that all the info you found on the internet helped you so quickly. This is honestly just within the past 2 years, because prior to that, there was virtually nothing, and many of our kids are where they are today, because we had to wait so long to even get a diagnosis. And, count yourself even luckier (sounds like you already are), that you had such an agreeable pediatrician on the first try!

 

If the abx doesn't work (and I certainly hope it does,) you might want to consider calling the NIMH, and see if she will qualify for the IVIG trial. They are being very picky, and only want newly diagnosed children. Since she so recently got sick, she might qualify.

 

I've got my fingers crossed for you, though, that she just keeps getting more and more better.

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Well, I am really glad that all the info you found on the internet helped you so quickly. This is honestly just within the past 2 years, because prior to that, there was virtually nothing, and many of our kids are where they are today, because we had to wait so long to even get a diagnosis. And, count yourself even luckier (sounds like you already are), that you had such an agreeable pediatrician on the first try!

 

If the abx doesn't work (and I certainly hope it does,) you might want to consider calling the NIMH, and see if she will qualify for the IVIG trial. They are being very picky, and only want newly diagnosed children. Since she so recently got sick, she might qualify.

 

I've got my fingers crossed for you, though, that she just keeps getting more and more better.

 

 

Thanks. I do consider us very fortunate as I have read cases of 12-15 years for diagnosis and any relief. I cannot even begin to fathom that. She probably would be consider low level moderate in her symptoms from what I have read. I have read some real bad stories too and though she has been suffering, it has not been as bad as I have read other stories, so we consider ourselves fortunate for that as well.

 

Where can I find information on the trial? Do you happen to have a link or should I google it?

 

Thank you very much again :).

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yes please consider the nih trial. We are part of it and feel very fortunate to be, please call.

 

 

 

http://pandasnetwork.org/2011/02/yale-nih-details-on-pandas-ivig-clinical-treatment-study/

 

 

even if you think your child will not quallify, call. let them decide,

 

 

good luck

 

I am loading up the site now, thanks for the link :)!!

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