WorriedDADNMOM

Our girls use St Johns Wort as a mood booster and Lithium Orotate for mood stability. Hope this helps. We have been pretty happy thus far---- 13-14 months in on a DAN Protocol.

For us, many improvements after a high fever. No ASD diagnosis, but pretty sure somewhere on the scale. Don't really care at this point. Doing pretty well with DAN protocol. Hopeful things will improve.

I think this is trial and error. For us, milk avoidance turned out to be huge. Converted over to Greek Yogurt from regular yogurt----------- During that time, ticcing was huge. Eliminated Greek Yogurt and ticcing stopped immediately. As was cotton candy with blue coloring-----another biggie. Anytime we have big influx of sugar,(bday, party's etc...) is another time that some of the behavior stuff flares up. I am curious how many are using DAN protocols for Pandas/Pans???? Any input? We have been doing "the kitchen sink" DAN protocol and are pretty happy with the results for the last 13 months.

Broo, I have two dd's that have Pandas/Pans. One slow gradual onset and one very sudden. In addition, they both have a diagnosis of Pyrrole disorder. We struggled with docs early on, so you are one step ahead. We chose the whole natural path for fears of the SSRI's and lack of any doc to really treat it to get our kiddos well. Kinda just fell into it with a DAN/Integrative Ped. We do many supplements for the below plan: 1) Debulk infection.....for us, 10day azithro multiple times followed by a couple 30day azithro. 2) Eliminate triggers, allow immune system to "chill out" This could be food allergies (ie Milk for us) pet dander and infections----thus longer term abx. 3) Control inflammation. 4) Rebuild immune function. 5) Xclear Nasal spray for it's antimicrobial properties to help prevent colds and clear nasal passages to prevent sinus issues. Allergies and sinus issues is part of many Pandas kids. We do just about every vitamin: Vitamin d for deficiency. Calcium/magnesium Vit c and Zinc for sick protocol Cod Liver Oil for anti-inflammatory and Omegas Enhansa (curcumin) for anti inflammatory properties. Primrose oil for omegas Probiotics and Trufibre for good Intestinal function.Probiotics esp during abx. Lauricidin as an antiviral---monolaurin I think is what it is. Everyone of us have different experience. I think for most parents though, antibiotics has been the best thing initially. Then, for us, future health since our kiddos are 9,8 and 6.5 was a key goal. Thus all the supplements and vitamins and minerals. I will say for me being 40+ and having my first bout with infectious arthritis, curcumin(off brand) and just fish oil have helped me feel much better. For us, it has been costly, but worth it. If you have any questions, let me know.

SurfMom----------------How profound!!!!!

LLM, I cannot agree with you more!!!! I had the same feelings with our middle dd who I believe would have been diagnosed an ASPIE....I was just ignorant to anything ASD. As we have gone down the PANDAS/PANS road, my what an eye opener. We had all those same fears of hurting self, others, pets all the sensory problems, behavior, bipolarish, and the list goes on..and on. Only us parents who "live it" are the ones who "get it". Also, the aspects of biomedical treatments(let alone antibiotics) aside from the SSRI just amazes me. You get this dear in the headlights look when people don't get it. Thank you for posting this and Thank you to all the parents on this board. It was a good refresher that we have been and are doing the right things!!!!

I would concur with bees. Any Ped should know what IGG and IGM are. Our ped however gave us a script for several things(myco at my request) which we did. With DD's in flare, she told us one dd had EBV previously and other highly allergic to cats. What she did not tell us was anything about the IGG or IGM numbers? A few months later when we left and got all blood work paperwork, our dd was 5.9H with a positive of >.9. Needless to say we were upset. I have had other ped and ID doc not sound concerned with 5.9H (H being for HIGH)My kiddo is in crisis and for them to not even tell me she was having this response was maddening. Momma, I would suggest getting to someone that is an Integrative Ped or DAN doc or anyone Pandas/Pans literate. Also, not sure of your history as I have not been following much, but best what I can gather, the typical plan of action is this: 1) debulk any infections-----viral(EBV, ect) bacterial(strep,myco,etc) 2) remove known triggers that cause immune to respond (pet dander, food allergies(casein is a big one for us) 3) control inflammation with either natural or OTC anti-inflammatories. 4) Supplement with deficient vitamins, minerals to help keep body healthy and begin to rebuild immune system. 5) Try to go whole foods eliminating processed stuff, dyes ect.... Also, removing known trigger foods as in #2, milk,gluten, soy etc......... Keep your head up and keep fighting. There is hope. It does get better. Be your kiddos best advocate. Don't feel sorry for pushing to get him better. If you need anything else feel free to PM me.

Here is what we have learned. About every couple decades we have a severe strain of strep that goes around. Since we don't all know exactly where everyone is from, it is tough to tell the connectedness. All I can say is I know of multiple kiddos in my kiddos class/ or close in proximity/relationally to my kids that have had some issues all very similar to what is going on. The fact that you already know about the strep titers is very good. I would add looking at EBV, Mycoplasma and any other viral infections that your doc might think are worth while. I WOULD NOT rely on amoxicillin alone. If there are other co-infections, amoxicillin will do nothing and in our case was not strong enough for the strain of strep that we encountered. Just my two cents. If you want more info, PM us.

I am so sorry to hear this........However, I would seek treatment ASAP from a DAN doctor if you can find one or an integrative Pedi. What part of the country are you from????

For me, I am not too concerned with the ASD/Pandas/Pans implied link.....however..........Could this all be the same thing, just different timelines(ages) for each and everyone of us????? Vaccinations, infections, messed up guts, overwhelmed immune systems, ........thus all the issues/similarities. I don't know but I wonder. Just am trying to keep getting our kiddos well. Only reason I say this is I have one kiddo of each......slow slide over time with all the classic Aspie stuff (no diagnosis) then Pandas and other kiddo 200% normal model kid with known infections then sudden onset psych issues.

I would 2nd the documenting portion. Document everything from fevers, malaise,sore throats, emotions, foods eaten, etc.....we found some sensitivity to milk products(had always been there but not at all severe) majorly increased after Pandas. Yogurt, greek and otherwise, milk or ice cream, cheese would mess with our dd much more so and can make recovery longer and harder. Controlling inflammation is key. Ibuprofen is good but has some long term effects. Our dd does not have ASD diagnosis,but we were put on Enhansa, which is turmeric/curcumin. We noticed improvements with dd. Our youngest dd----- after putting her on due to some issues, taken off, then putting right back on with marked improvement. Kinda uncanny. I have also taken a curcumin supp for minor aches and pain. During the time I was on it (45days) I noticed it helped. For me, it was subtle, but did knock out inflammation. I was taking low dose different brand. Also, look for other triggers. Ex. allergies to enviro and foods. We have tried to eliminate dairy which has helped. Also cat was gotten rid of. The way I understand it, you have to do everything you can (naturally or within your control) to get the immune system to "chill out". Part of the chilling out might be 10-30 days of azithromycin. That has helped us. Oldest dd's anxiety was gone as fast as it started----just took 3-4 months of fighting with(what I would say) annoying(what she would say) old ped and getting new ped/some abx. Most of all, keep your head up and keep going with your gut. Educate yourself. Document. DO NOT BE AFRAID TO ADVOCATE FOR YOUR KID.