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I wish I had pulled my daughter out, big regret.

we do it, no downsides for us

Does he also have Autism? The TACA organization can match you up with a mentor, ask if they have a PANDAS mentor. https://www.tacanow.org/ Hope it helps, Erin

What state do you live in? Getting an IEP is more involved then just a letter. Find someone local who can mentor you because the already know the ropes. It can be a friend of another parent or you can hire a mentor or a lawyer. A book like "From Emotions to Advocacy" is a good start as is the book "How to compromise with your school district without sacrificing your child." (Sadly) I'll suggest that you not assume that your school district has your interests in mind. Go in to your meeting with a list having done your homework asking for all the services that you think he needs and behaving as if you have a seat at the table (which you do you are a member of his team) vs. many people go in just wondering what their child will get or be given from the district.

I have 2 kids with PANDAS, they also have OCD Just want to suggest that there videos from the News with David Muir 2020 on abcnews,com, on youtube too I think. The program illustrate some of what you describe My exact point is that there was a doctor from the Michigan (?) area on this program and it matched our kids so closely that i really felt like going to see the guy myself. You should be able to get his name on the video. Hope it helps.

I do not think plasmapheresis alone confers long term benefit though it may be the jump start if you have other treatments lined up right away for follow up such as maintenance herbs or antibiotics and antifungals come to mind. What have you tried re the microcalcifications? Bacteria in the area of the breast as you mentioned can be cleared out by lymphatic drainage, and therapeutic breast massage by a trained therapist over several sessions. There may be some training online that you could access. Consider your methylation status may impact how your body clears out toxins (or not) may enlighten some of your decisions. Good quality topical magnesium and lymphatic drainage can be very, very helpful consider Ancient Minerals Magnesium lotion, start slow. You may get "prickly" feeling if you go to quickly. Consider books written by Carolyn Dean MD, or her website though her website is quite huge it can be harder to follow a topic then it can be when reading her book. xo, E

We had both Mono and EBV crop up in a situation where an unrecognized lyme bacteria had taken hold,. My understanding perhaps oversimplified is that momo and EBV are facts of life/always there but are also opportunistic and more likely to increase when someone's system is compromised, We were able to reduce both mono and EPV with homeopathy targeting both plus drainage our goal being a gentler solution. Quick results in our case.

Agree (above) herbs can cause strange sensations. I have also at times thought there might be parasite activity -- as if parasites could be causing mischief not sure how else to explain it. Had similar issue w DS at different times. We found that the Boiron Homeopathic remedy Causticum 30C helped with pee accidents. The way we were told to use it was to take 5 pellets every other day and if that didn't work to call the homeopath -- we did not need to call about that again b c it worked.

You can give inositol for OCD. Go solow, Separate from that a parasite treatment is often used with pandas. Treatment woll need to be personalized to conditions such as Lyme if known. Would do it only w supervision. Hope it helps, E

Sorry you are having such a rough time. Great advice above. If you can post about your location information soon that would be helpful. There are things you can do to help your family in the meantime. We had many frustrating conversations with regular Pediatricians that cost us a lot of lost time. Some people have has success with using catch phrases like "failure to treat" sometimes gets through to reluctant docs and gets them off their duff to either do a trial treatment of antibiotics or to refer you to a specialist. Are you giving the kids any supplements or supports? one of our first moves was the antifungal parade (Sid Baker MD) Interesting article here http://naanyc.blogspot.com/2011/05/dr-sidney-bakers-treatment-options.html

Have you done any Homeopathy?

--- and sorry I should have added that re dehydration there are a lot of hydration recipes out there many of which are low in sugar. I am going to go out there and say that I think that the sugar (too much sugar) might be part of the problem and whatever you can do to work to reduce it the better, not preaching on that topic rather there is a product made by the company energetix called ReHydration it's a homeopthic, It's drops. We take on dropper by mouth every day an it keeps them hydrated. It made a lot of huge difference in hydration for my kids who were so dehydrated in starting IVIG that the nurses could not get an iv in to them. Water is not always the problem. People can take lots of water and still be dehydrated. Hope it helps, E

Our kids really like Yogi Green Tea "Kombucha Decaf" which they picked up from me. It is mildly sweet - though not sweetened and the benefits of green tea are calming.

We use "pharmanac" and find it quite gentle and quick acting, supposedly has best absorption of all Nac, recommended by Dr.

down the road I would advise not waiting more thane 10 days to determine whether an intervention is working or not /contact the practitioner or ask for help on the message boards

Are you using an anti fungal? Very necessary as die off cases years to flare. Ask Doctor for antu fungal. We use diflucan at 400mg /day. If you cant get your hands on it over holiday weekend try candidase and candex (available at whole foods) start smal dose 3x day.Stay on it once you get the antifungal in place. Consider activated charcoal as well -- away from other supplements. I suggest capsules if you can as it can be messy always away from other things. Charcoal is very gentle and calming,

I'd have the doc give her a good week or 2 weeks on zithro even a double dose of zithro before moving on to chasing parasites. A lot of kids it's either Zithro or Augmentin. A small number take both. Also high dose inositol protocol might be of benefit esp. for those feelings of 'afraid all the time" poor kid we have been there google inositol in all the acn forums to see the range of experiences

Is this urgency a new thing for you? We have this problem only in the spring w allergies etc. My working assumption is that it is a histamine problem. Would welcome any input, ideas.

Bioray has some interesting allergy histamine info on their site that I have been looking at as we are at the stage of residual pandas symptoms not primary any more hoping to knock them out. Where are you at?

We have had been where you are now and still have similar issues on and off better managed now. Who is your MD? You should be able to reach them in crisis by email or phone, Symptoms of frequent urination are vexing, we have this problem. Should be temporary, You can try UvaUrsi. Dont go past 2 weeks. Ashwagandha should address or help Anxiety increase or re add the dose 3-4 x per day *might help* obsessive thoughts - might not Inositol helps ocd - possibly need high dose inositol, get a pure brand Math comes back when the other things go away Continue to try to reach your doc.

Just jumping on - jenniferg, so happy to see your recounted experience. Ours is very similar though our kids are older and started at 30, ds is at 60 though his older sister is staying at 30 so far they had a huge run of improvement to date. Just did bloodwork on Monday. Will see if any numbers have improved. QUESTION DS has a virus and wicked (pandas) post viral OCD which does not seem as bad as its been in the past but its still an issue. Thoughts/experiences? Thanks!

I would not vax right now. I would suggest seriously taking immune titres so you know big picture deficits her immune across the board . Sorry, tough love here. Food and immunity. How is your child's diet right now? A lot of parents have a hard time changing or restricting their child's diet when on top of everything the kid has pandas and "now you want to take away their favorite food", or they are refusing anything but certain foods. We really did. It made us sad. Resolving the allergies alone may be enough to build up the immunity. Resolving both the allergies and the nutritional insufficiency is going to be the key, it's going to take a while -- just saying. Have you considered other means by which to build immunity? Has your child been tested for nutritional insufficiency and allergies by a MAPS doctor? Do you have a MAPS Doctor or a PANDAS doctor? as a parent of 3 kids with PANDAS and knowing many PANDAS families there is not one that does not have moderate to severe allergies to food and environment -- my best suggestions while you look around for the best practitioner you can find is to get to a great maps nutritionist, allergist or immunologist and to also put your kids/family on a new diet -- we're on a paleo/modified Atkins hybrid which has been very beneficial for our kids.We take a lot of supplements. Our kids are getting better but we've been at this a while. Autism research institute has some free webinars with top MAPS practitioners talking about diet -- not just for autism -- celiac, PANDAS. It's all related. http://www.tacanow.org/family-resources/food-allergy-testing/ -- taca has tons of info about everything http://ariconference.com/?p=199 -- how to work with your practitioner http://ariconference.com/?s=vicki --- nutritionist Hope it helps.

Agree w PP that it is likely a guest brought a mild virus or bacteria w o even knowing it, also thinking that we are moving into mold season. What part of the country are you in? We're in lower NY State. It's starting to bother us -- plus I think we've been exposed to strep. What are you doing to treat the ocd on a day to day basis and what do you do for flares? Thanks, hope it helps.

Get the younger one prophylactic treatment antibiotics or homeopathy whatever modality works for your kids. We had 2 kids with PANDAS, one is now recovered pretty much, she gets a little OCD in the winter months. My son has autism and PANDAS he's better but still not recovered, still reacts and its debilitating. If they had been treated earlier they might not be chronic. The youngest one child #3 has to mild reactions to strep that I observed and reported her siblings were already in treatment and she got treatment. She has had 1 zithromax per week for the past 4 years and though she sometimes reacts to the strep or viruses that her siblings react to her reactions are generally appropriate fever sore throat or whatever - not in the brain, not raging, not ticking. Fortunately by the time you get to the 3rd kid it appears that docs listen, unfortunately for the 1st and 2nd kid help did not come in time. They will live with the memory and to a degree residual of the illness it for the rest of their lives most likely, stinks.