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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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Robinhubb

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 I am so glad I found this site. As i was about to lose my mind. I had a once healthy child ..she is 13 and honors student/volleyball player and comedian in our house. But after getting sick and being put on a ton of tessalon perls,  3 days later a doctor she saw finally said oh this is strep. She has always been my strep kid. Even getting tonsils out that did not work. Ahe gets it all the time. she started battling intrusive thoughts.  Out of the blue she is crying all day. I have been trying to find a doctor. I finally found a functional health doctor we will see wednesday. Im taking her to counseling at the end of the week. She yelled yesterday i would rather not be here because my brain isnt me. Its taking over. Im so hurt. Its not my baby..any advice please!! 

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Is the functional health doctor an MD or DO and able to prescribe antibiotics?  Although my DS 14 has had success with herbal antibacterials as a prophylactic, when in crisis mode we saw the most success with conventional antibiotics.  The first time he used a high dose of Augmentin.  We saw nothing for 10 days, but on day 11 he began to improve rapidly.  

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He is an MD.. im hoping he will put her on something stronger. As she has always taken only zpack for 5 days never anything else. She got diareah after taking penicillin as a baby so we thought she was allergic. Im just ready for answers as the intrusive thoughts are killing her daily.

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I’m so sorry she is going through this.  My DS was at crisis level OCD/intrusive thoughts from late 2015 to late 2017.  We had never felt so desperate in our lives.  He is about 85% better, but getting monthly high dose (HD) IVIG treatments.  

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He is an MD.. im hoping he will put her on something stronger. As she has always taken only zpack for 5 days never anything else. She got diareah after taking penicillin as a baby so we thought she was allergic. Im just ready for answers as the intrusive thoughts are killing her daily.

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This is the hardest thing ever! On one end of the spectrum im thankful for doctors but with so many doctors lack of knowledge everyone wants to throw her on drugs! The only thing im willing ro try is cbd oil.. im in tears! 

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Let me know how the CBD oil works.  There is also a supplement called NAC that we had some success with.  There was a Yale clinical trial for OCD with NAC. You may want to ask her new doctor about it.  The dose for the clinical trial was 900mg 3x a day.  My son stopped taking it a few months ago, because he was tired of taking supplements, but recently said he wants to start it up again.  It’s easy to find...Whole Foods, etc.  

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We are having good success with homeopathic remedies.  I've been to a homeopath 4 months ago.  She put DD onto a annual program, with the remedies being changed about monthly.  We are currently moving onto month 4, and thankfully seeing good results.  This is not a quick fix though.

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Are you doing anything anti-inflammatory?  Try ibuprofen 3x a day for a week and see if it helps.  Or try turmeric 2x a day.  If she does even slightly better while inflammation is reduced, it's helpful to know, as it suggests something autoimmune is involved.  Steroid tapers have helped my son several times.  If you can convince a doc to prescribe them for a couple of weeks, that may be something worth pursuing.

So sorry you are going through this.  Sending virtual hugs.

 

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2 hours ago, bws1565 said:

Was there a recent vaccination that could have caused any of this?

Omg...i believe this too. She had flu shot in October,  i was always told to vaccinate everyone no questions but wasnt until my baby had her 2 month old shots, she slept for 3 days and when i would move her she would scream..so no more vax..but to answer yes she had a flu shot per dr orders since i was pregnant..the whole house.. snd asking most drs gets you that evil look. 

I mean ehy the would i drink formaldehyde let alone put it in vaxx?? So many questions. Im so tired, and i just cry when i even get 5 min alone, she was normal and then not...she said 2 years ago after she had being sick she got the intrusive thoughts then. So i am going backward looking and disecting. She just said she had them for a couple of day and they left. Im so scared. Cant afford treatment even if anyone beleived me. So im doing mt hollistic protocol and ordered charlottes web today 

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I watched a documentary this winter called "Healing From Vaccines" .  It was available online for free while running but you might be able to get it still.  That gave me the final push to do homeopathy.

I believe my DD's problems are vaccine related too although I cannot prove it.  Her issues were executive function related, which are very painful for a bright kid like she is.  And she did have intrusive thoughts at one point too....

I have stopped vaccinating about 7 years ago, although I was coerced into giving the MMR due to the outbreak in NYC. And YES I have seen reactions.  And now we have lost the religious exemption here.....   I will not put my younger kids at risk; looking at my options.

I would advise you to stay away from ALL vaccines for your entire family. Perhaps have this reaction reported to VAERS, or at least put into her file.  Risk of a flu or even measles is just not worth what we are going through.

To quote, "It takes a of a lot of money to get rid of what a free vaccine did".

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Agreed! Also she just a flouride treatment and fillings as well as given laughing gas. Im so confused..she doesn't tell me any of her thoughts right now because she says she thinks i will hate her and think shes crazy. Im dying inside as her mother. How can you be fine and turn into an ocd person over night. And thats just it, she doesnt display any other ocd just the thoughts.

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My DS’s first major sudden onset of OCD at age 8, happened within 48 hours of dental work.  The conventional psychiatrist he first saw said it was possibly triggered by the Nitrous Oxide.  Apparently it can deplete vitamin B6 or B12 (can’t remember which). She threw that theory out the window after his labs showed no B Vitamin deficiencies.  

Years later, another PANDAS mom informed me that dental work is a common trigger for PANS/PANDAS.  It can unleash hidden bacteria.  Now my DS starts an antibiotic a few days before dental appointment (even cleaning), and continues for 2 weeks after appointment.  

I’ve been skipping the fluoride treatments for him.  The dentist disagrees, but I don’t want to take any chances.  

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