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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

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It has been a long time since I have posted anything here. My dd13 was diagnosed with PANDAS.../it appeared to start intensely around the age of 5. Her most significant issue has been intense rage, and then around age10 or 11, she started lying when the truth would fit better. I mean, lying about everything.

 

Even though I know she has this serious medical issue, after years of trying to treat it (even including almost every mood stabilizer or anti-psychotic), we have had no success in healing the underlying issue. We have treated for Lyme as well. we have not done i ig because insuranse will not oay.

 

We just had her evaluated again to see if we could get some help (because she presents with mood issues, odd symptoms and looks like asperger's). The psychologist gave a diagnosis of bipolar with serious depression and conduct disorder. Not odd, conduct disorder! She told us that she worried for our safety and that of dd13 and to make sure that all meds and sharps were locked up. She felt strongly that dd13 should be on an anti-depressant.

She has been on an anti-depressant before--with horrible side effects--not the least of which are weight gain (and this added to her already low thought of herself).

 

We started 5-htp, and immediately had three great days (no lying, cooperative, would allow or give hugs or even a touch).

 

Then things slid back to horrible. Stopped the 5-htp. A week or so later, we did 100 mg of 5-htp and 7.5 mg abilify (a 30 mg broken in 4 pieces ) am and pm. We got 2 weeks of fabulous! For the first time in YEARS! Dd13 had been sleeping on a mattress in our room for over a year because we couldn't trust her to be in another room; she would not go to sleep, would get in the middle of the night and get I to all sorts of things. On this combo.she

was able to sleep in her own room for the first time in well over a year.

 

After two weeks, it wore off, and she was back to horrible. Then after a few days. We did 500 mg of inositol with 7.5 mg abilify and the 100 mg of 5-htp am and pm. Again, great until it wore off. Then I was out of 5-http and out of town. (She was wearing down again anyway). I gave her the abilify and 1000 mg inositol. She was fabulous. Found 5-htp 100 mg extended release and gave that to her the next day With the 1000 mg inositol and abilify. Continued fabulous for two weeks.

 

By this time, I can see that this works but is going to have to be rotated with something. I tried Sam-e, but that was not effectiive. The last time, we we t off and continued the inositol and abilify with good results, but not as good as with 5-htp. The. That wore off after a week or so. Things were ugly again. We stopped tha abilify and everything but used b12 (methyl) for four days. Things were good. We always get a three day honeymoon coming off of abilify. At the end of that time, things were ugly again. The. Started -5-htp, 1000mg inositol. 7.5 abilify. All is right wih the world again!

 

So.....I share this because it might help you! And I also share this because this is the best place I know to go for answers! And I wonder if anyone might know why these things keep wearing off/ how that works. (We' e had some testing that shows that her liver metabalizes meds fast). And what else might work in th interim. I play around with using magnesium, fish oil, core (zinc with b6, etc), choline, sam-e, NAC and GABA. Bui haven't found a good regimen for any of those.

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It has been a long time since I have posted anything here. My dd13 was diagnosed with PANDAS.../it appeared to start intensely around the age of 5. Her most significant issue has been intense rage, and then around age10 or 11, she started lying when the truth would fit better. I mean, lying about everything.

 

Even though I know she has this serious medical issue, after years of trying to treat it (even including almost every mood stabilizer or anti-psychotic), we have had no success in healing the underlying issue. We have treated for Lyme as well. we have not done i ig because insuranse will not oay.

 

We just had her evaluated again to see if we could get some help (because she presents with mood issues, odd symptoms and looks like asperger's). The psychologist gave a diagnosis of bipolar with serious depression and conduct disorder. Not odd, conduct disorder! She told us that she worried for our safety and that of dd13 and to make sure that all meds and sharps were locked up. She felt strongly that dd13 should be on an anti-depressant.

She has been on an anti-depressant before--with horrible side effects--not the least of which are weight gain (and this added to her already low thought of herself).

 

We started 5-htp, and immediately had three great days (no lying, cooperative, would allow or give hugs or even a touch).

 

I'm wondering if you are continuing to see any success with 5HTP?

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