dasu

Interesting article. Its been interesting yet painful to see the slow process mainstream medicine has made on connecting bacteria to mental health. Another key takeaway I have from reading the article is to keep better notes. '“Careful parental observations can be crucial,” said Dr. Frye.'

My daughter presented in the classic overnight change pattern. My son was another story; he demonstrated episodic ODD, minor urinary issues and inappropriate behavior coupled with anxiety/fears. This went on for about two years before he started to show other signs like OCD and tics and then major violent aggression and we got him into a PANDAS doctor. You may also want to pay particular attention to your second child, this tends to run in families.

We are/were using enhansa and quercetin for our two. For my son we switched to krill oil as he is sensitive to sulfur. We serve up a lot of garlic both raw and cooked. We are planning to introduce cinnamon, ginger and cloves as well.

I forgot to mention that our kids did not have the HepB vaccine (unless, as Mayzoo mentioned, it was given without consent) and have PANDAS. We followed a delayed vax schedule but also note that we didn't see PANDAS until after vaxxing.

Yes, thank you for posting. I noticed this study didnt originate in vaccimerica.

I do not have the answers to your question. We have been told that Virginia Baptist in Lynchburg is good though (we live outside Charlottesville) I hope and pray you can get your son into treatment and that you see recovery.

Thank you for posting this. I am planning on doing the Igenex Lyme test in about a month once we are 4 months out from IVIG. PANDAS has been a scourge to our family finances included. There is only so much money to go around. Its hard to know where to spend money given the expense PANDAS treatments can incur and the ever growing number of tests to explore. Insurance offers poor coverage and we have to plan on how to get insurance to cover. I will see if we can get the Stony Brook tests.

Do clinical observations - severity of PANDAS symptoms - have any relationship to outcome of Cunningham panel? If one were to administer the test in a flare vs in remission would the results vary? Does treatment with antibiotics or steroids effect outcome of the Cunningham panel?

Thats very interesting. Our two PANDAS kids have trouble with bloodwork so we only took body temperatures and they were 1.5 - 2 degrees lower than normal. They are now on Armour thyroid. My daughter had high CamK however my son hasn't done the Moleculera labs yet. As we only started this 6 weeks and are in post IVIG its hard to determine the effect. We are hoping for a stronger immune system. Do you find evidence that hypothyroid is a factor in triggering PANDAS or is a result of it?

I am sorry to hear about your son, you all are going through a lot. I assume the rage continued after the end of steroid, correct? Like your own case, the rages got worse after introduction of the antibiotic, clindamycin. We have used Risperdal for the rages, and saw marginal improvement. We did notice it was more effective if given 2x day. Epsom salt baths have helped as well as lemon balm. Many PANDAS kids have trouble sleeping and that exacerbates symptoms. But really in the end we end up stopping everything else we do in life to mollify their anger - doing anything that they find enjoyable, massage and joint decompression therapy, sitting and watching them play video games. I realize your son doesnt have OCD but it can also be a tool to distract them from themselves and fixate on a neutral idea.

We did see gradual improvement from 2-11 weeks post-IVIG although the last 2 of those weeks were erratic. They have been on Clindamycin since 2 weeks before IVIG and we were directed to use Clindamycin until symptoms resolve. I guess I am worried that an infection will negate the IVIG. Not true? Both kids are back to not sleeping, violent rages, are fixated on violent talk and actions ("I cant go in that store someone will shoot me", "im going to slit your mouth off"), crying, yelling etc and likely generally housebound again. We havent had to restrain them again but I can see that coming. So its as bad as it ever was. Now as for duration, that remains to be seen. Nicklemama, I really wish we would have done Lyme and coinfections testing before IVIG but they were not able to. We are planning on testing again via Igenex in a month when the IVIG wont falsely impact test results. When you state that "IVIG is not a cure" you mean its not a cure for Lyme/coinfection correct? I understand it can work when any infections are resolved yet PANDAS symptoms persist. It is sad to hear the story of your boy and the pain he (and you probably) has had to endure. PANDAS robs familys of so much.

Interesting point. We were told to wait until 4 months but also heard that in that window of time it was important to avoid exposure to strep or other infections. I thought that was the role of the steroids - at the risk of compromising immune function. Each flare has gotten progressively worse for my son. My daughter had a massive onset and then from there each flare has been worse. The jury is out post IVIG. My son today remembered the time he attacked me with an axe and this evening told me that the thought of doing it again was bouncing around in his head. So I am hoping not go there - we had to put up all kinds of weapons ranging from knives and tools etc all the way to belts and candles he would like the throw.

Done. I have to kids with PANDAS but was only able to take the survey once though.

Finally! We have been waiting for publication for almost 2 years. As you mentioned I hope to both get better recognition, treatment and insurance coverage. I am tired of hearing "you're parenting is at fault", "they just need psych therapy and meds" and "you will be paying out of pocket". ABA, thanks so much for the link.

Our two kids had IVIG Dec 2014. They gradually improved until about mid-February when they got sick with a cold virus. We gave steroids and they improved. They got coxsackie about 2 weeks ago (hand foot mouth sores) and after acyclovir they have been had some days that were better than ever and some days that were worse. Unfortunately the past week has had no good days - we are back to the fears, anxiety, potty/sexual talk, screaming, hyperactivity, fighting, tics, OCD. (Also we tried the methylation changes but there is too much variability in their day to day behavior to assess.) We are confused and not able to put pieces together. Is this latent issues from two infections? They dont show any signs of allergies, but us parents notice something in ourselves. Also could they be reacting to someone else sick - my parents have been the source of both infections. As the ibuprofen has made little difference, we are considering using another round of steroids. Is that recommended and will there be any negative effects? Any other recommendations?

This may be another thing to avoid. And we were planning on having ice cream tonight... http://www.reuters.com/article/2015/02/25/us-science-emulsifiers-idUSKBN0LT26S20150225

I really appreciate the key information. You all were so kind to take time out to write all this key information. I am very thankful for this forum. We tried giving some B12 and it went straight into craziness, tics OCD; and that continued, even after backing down to nothing. It turns out that the kids got a Cocsaxie infection, and have the typical sores etc. In the mean time we did remove major sulfite sources and will resume when we are over this, hopefully.

We did IVIG for our two kids 12/2014 with Dr L. The biggest issue, BTW, is that the IV causes frequent urination and the bathroom is not easy to get to. The headaches came as expected, my daughter's was quite bad. All of our PANDAS friends have gone through IVIG, and many were doing much better before coming down with some infection in the 4 month window afterwards. Consequently, we have tried keeping our kids isolated, except for grandparents. My kids are 6 & 7, and are not careful in the least. Unfortunately the grandparents were not as careful and have pulled down two infections and passed them on. (My mom is on a post-cancer med that lowers immunity.) She prescribed steroids for use during flares and that has helped.

My two kids had IVIG December 2014 and have gradually been improving. However, they got an infection of some kind in early February causing a flare. Per Dr L's instruction we did a 5 day steroid burst, and symptoms remitted. Last week we noticed symptoms beginning to increase again and then noticed classic signs of hand foot and mouth - sores on hands, feet and mouth. It hit us parents too. Our local physician prescribed Acyclovir 600 mG 4x day = 2.4G/day to be taken for one week. They are 72 and 54 pounds. I noticed from other posts here that most prescriptions were for longer periods - 10 or 20 days, and seemingly lower dosage, although weight was not recorded. Should we ask our doctor for a lower dose and longer duration? Also the steroids were prescribed for use at our discretion, for use during a flare caused by an infection post-IVIG. Is it recommended to do another burst just 3 weeks after our last burst?

We have two with PANDAS. While we didnt recognize it at the time each of our kids flared and suffered from PANDAS symptoms for 1-2 years before diagnosis. We can also look back and realize that parenting was difficult consuming time and emotional energy, and even before diagnosis neither mom nor dad was able to enjoy things that most parents do. The same goes for the kids. PANDAS has brought us very far from the life we imagined that all of us would be enjoying. What I would like to know is this - diagnosis aside - is that if PANDAS presents early in a kids life, does it make the course of the illness more or less severe and more or less tractable?

,Yes, I got the results through genetic genie, its a lot easier than using the 23andme browse feature. But I found nutrahacker.com also provided a list of foods to avoid and supplement with... Avoid - androgens, BCAA, cannabis, curcumin, estrogens, folate, folinic acid, methyl B12, methyl donors, sulfates, taurine, B6, vitaimn E Encourage - CoQ10, diindolylmethane, L-methylfoalte, mangense, methyl B12, molybdenum, NAC, arginine, phospatitdylcholine, progesterone, ribo-5-phospate, riboflavin, rosemary, sage, SAMe, TMG, B12, B2, B3, B5, B6, D3, whey, zinc A lot of things pop up on both encourage and avoid lists. To start we will try dropping curcumin and other sulfates as recommended. As a side note, I noticed many of the supplements to avoid were taken in the pregnancy supplement.

I am curious why Rituximab is only prescribed after PEX. The patent expires this year, so it should be cheaper than PEX, no? For many parents, finances are a limiting factor.

I got the results back for my son. I was hoping to get bloodwork in before his IVIG two months ago. We continue to have a lot of struggles with PANDAS things (intrusive thoughts, OCD, tics, LOTS of fears and anxiety) and also other things that are also may stem from other causes like impulse control, ODD, anger and ADHD. So I decided to do the 23andme. I can get my son to spit in a vial, thank you you PANDAS. I am struggling with the implications of what this specifically means. I first started only looking at the MTHFR snips, but now realize there are other genes in the pathway. The question is what should we supplement with (or not) and what dietary changes should we make. At this point we supplement with curcumin, quercetin, krill, fish oil, and, at times, lemon balm. Our diet is fairly open, having seen no changes going without wheat and dairy (although we stopped dairy in this current flare and only for about 6 weeks.) COMT V158M rs4680 AA +/+ COMT H62H rs4633 TT +/+ COMT P199P rs769224 GG -/- VDR Bsm rs1544410 CT +/- VDR Taq rs731236 AG +/- MAO A R297R rs6323 T +/+ ACAT1-02 rs3741049 GG -/- MTHFR C677T rs1801133 AG +/- MTHFR 03 P39P rs2066470 GG -/- MTHFR A1298C rs1801131 TT -/- MTR A2756G rs1805087 AA -/- MTRR A66G rs1801394 GG +/+ MTRR K350A rs162036 AA -/- MTRR A664A rs1802059 AA +/+ BHMT-02 rs567754 CC -/- BHMT-08 rs651852 CC -/- AHCY-01 rs819147 TT -/- AHCY-19 rs819171 TT -/- CBS C699T rs234706 AG +/- CBS A360A rs1801181 AG +/-

I agree - the lack of information is suspicious. All of us with PANDAS kids are desperate and vulnerable. Until we can openly share specific and detailed information of what oils are used and for what symptoms, this is just essential snake oil

Details?