A dear friend of mine is desperate...her and her four children have all of the symptoms and she has been having sleepless nights as to why...she finally made the connection that the gut and brain have a symbiotic relationship...well she stumbled upon this research when desperately trying to find ways to help her children sleep...this began her journey down the rabbit hole...
What is PANS / PANDAS and what are the symptoms?
I. An abrupt, acute, dramatic onset of obsessive-compulsive disorder or severely restricted food intake
Parents describe the day of onset as the day they “lost” their child. Typically the change is dramatic, with symptoms developing within a 24- to 48-hour period. The OCD symptoms and/or eating restrictions begin so suddenly that most parents can recall the exact day and time that the OCD or restrictive eating began. Under the PANS criteria, a child may never have had OCD before or a child previously had low level OCD and suddenly is debilitated by it. After onset, the OCD and comorbid symptoms may continue to appear over the next few days or weeks and may grow in intensity. In many cases, each new morning seems to bring another obsession, compulsion, or comorbid symptom. Comorbid symptoms and personality changes also occur. The rapid change in the child’s portfolio of symptoms makes it even harder for the patient and his or her parents to cope. PANDAS and PANS children frequently struggle with multiple OCD symptoms at the same time, as well as multiple simultaneous comorbid symptoms." (for more, click on link below)
Here are the guidelines for PANS https://www.pandasppn.org/ppn-pans-diagnostic-guidelines/
PANDAS (very wordy) https://www.pandasppn.org/ppn-pandas-diagnostic-guidelines/
I found this little gem, a compialation of different antibiotic alternatives https://buttercupfarm.wordpress.com/2015/11/15/alternatives-to-antibiotics/
PRICELESS Info from Mrs. Ashley on RecoveringKids.com/Biomedical healing FB Group (COPIED AND PASTED) I suggest copy and pasting the names of dr on you tube to watch their lectures.
Before you choose a doctor, you might find it helpful to search youtube for the following doctors and PANDAS...Dr. Latimer, Dr. Kovacevic, Dr. Trifiletti, Dr. Swedo, Dr. O'hara, Dr. Cunningham. There are quite a few videos of all of them speaking and you can get an idea of how they treat, their personalities, etc. Dr. Trifiletti and Dr. Kovacevic treat adults and probably have the most experience treating adults. Dr. Trifiletti has a FB page where you can follow him and get a feel for him. The FB page PANDAS/PANS/Lyme/Tick borne diseases is another god resource for finding a doctor. Your husband should read the research on the Pandas Physicians Network and consider joining . pandasppn.org. The research is sound. Stanford, Yale, Harvard, NIMH..... In terms of treating naturally, I was in the same place. Once I identified PANS in my children, I treated only naturally for 2 years with one, 3 the other. Before that I had done 3 years of diet, cleaning up our indoor environment etc. Read up on rheumatic fever. PANS is no different. Once you understand what is happening to the brain and how similar it is to what happens to the heart in rheumatic fever, it is an easier pill to swallow choosing antibiotics, ivig, etc. I lost a lot of my older son's childhood remaining steadfast in my desire only to treat naturally, and I really regret it. Conventional treatment has really started giving him and us our lives back.
And my last word of advice...DOCUMENT, DOCUMENT, DOCUMENT....any scientist knows to record information. Get a notebook, and start writing things you remember....use pictures to help you remember dates. There is an app called Baby Connect that is AWESOME, I use to it to document when my kids are sick and other important things, and different caretakers can input info. No I am not making money by telling you this. http://www.baby-connect.com
If you have cured you or your child from this or in the process of and see positive results, please share your story! Share this with those that can benefit from it.
