MaryAngela

@mmw Thanks for the info. I will order it today.

@mmw I am intrigued by the cryptolepis. My DS14 has been getting monthly IVIG (1 g/kg) for almost 1 1/2 years. His MD doesn’t generally use prophylactic abx. DS takes herbal antiviral, antibacterial and anti parasitic remedies. His PANS was severe. His tics are gone and OCD about 80% gone. Still has sound and odor sensitivity, focus issues and issues with executive functioning. Do you think the cryptolepis will help with these issues? I’m so happy hearing how well your kids are doing. Thanks for posting.

Be sure to do blood test for Mycoplasma Pneumonia as well as Strep Titers. There are two strep titers test, but I don’t recall the names. Yes, sounds like PANDAS.

If you are feeling things are ok that you logically know are ok, that’s a good thing, I think. Hopefully the ibuprofen will do away with delusional thinking that may have tortured you in the past.

@Wombat140 I’m not sure what you mean by effects of Ibuprofen? If you’re talking about anti inflammatory effect, I would guess it wears off in 4-6 hours.

@pic13 You are correct about the acronyms. Have you considered having your son eating the Manuka Honey? I’ve been giving it to my DS 14 this winter. He had a flare in fall, and used antibiotics, but they tend to cause gastrointestinal issues, so I switched to Manuka Honey. Please post any updates on AIP diet. I’m curious.

@jeremyssmith When DS received the 30 day Augmentin, he did not get worse before better. Later that year a different MD gave him 14 days Penicillin for an ear infection. His OCD and tics began improving after 3 days, but he regressed after abx stopped. Again, he did not get worse first. Was your son tested for Mycoplasma Pneumonia (blood test)? In 2017 my DS responded well to Clarithomycin after Mycoplasma showed up on his bloodwork. Apparently, Augmentin does not help Mycoplasma. The unfortunate reality is that until you find a PANS / PANDAS specialist, you will need to do your own research. My DS is also 14. He was diagnosed with SPD as a baby. Current PANDAS MD says the SPD and PANDAS are from the same cause. Our current solution is monthly IVIG. He’s been having this for 15 months. He fluctuates from 70-90% recovered. MD is treating him for encephalitis. It sounds like your DS may have encephalitis also, possibly triggered by the vaccine. Not to get back into the vaccine issue, but even though the potential vaccine side effects are listed on a government website, most MDs are not trained to recognize or treat a vaccine side effect. They are hyper-focused on the agenda of getting all kids vaccinated.

I have some insight on the abx, but also something to add about Vaccines (I promise I won’t go on too long). My advice is to never make any anti-vaccine comments to any conventional medical professionals. Once you do, they will stop listening to you. My DS is currently receiving monthly IVIG, so for the time being we have an excuse not to vaccinate. It appears most PANDAS docs are anti-vaccine, but you may need to read between the lines. Even they don’t want the hassle of being labeled anti-vaccine. As for the abx...My DS is a severe PANDAS / PANS case. He was prescribed a high dose of Augmentin in 2016 for 30 days. We saw no results for the first 10 days...then on day 11 he began to rapidly improve. By the end of the 30 days, he was 90% improved. He began to regress about 5 days after abx stopped. MD would not prescribe that high dose again. Since, we have seen some improvements from abx, but never the same as that first time. I believe it was Dr. Frankovich from Stanford that said if abx are working, and they are stopped, it is very difficult to recapture the success.

I tried Oil of Wild Oregano for my DS in 2016. This was before I could find a doctor to evaluate him for PANDAS. The only info I found on dosing was on YouTube. The information I found (not necessarily for PANDAS specifically) recommended pure Oil of Wild Oregano (not diluted with olive oil, etc). I bought it from Amazon, I think, and it shipped from Greece. YouTube info said to use high dose. If I recall, I gave him 15 drops, 4 or 5 times a day. I had to mix it with orange juice. It was so strong and even mixed with orange juice, would burn his lips and mouth. Since DS complained so much, my DH agreed that I could give it to DS for only one month. DS was severe at the time. Incomprehensible OCD symptoms. We began seeing improvement in about a week. By the end of the month, his OCD symptoms went from a 10 to a 7. Looking back that was huge. I would definitely try it again if I needed to. I just wonder if the less concentrated versions work.

@beenthere Our DS’s MD also said the peer-to-peer was useless. The call was actually initiated by the insurance co. when they were reviewing the appeal. I paid the MD $250 for the call. It was from that call where MD called this encephalitis protocol. Not sure if that was his term or the physician from insurance co. I did look it up, and remember seeing monthly IVIG for up to 18 months. DS14 is in a bit of a flare right now. He had a sinus infection and tested positive for Mycoplasma Pneumonia. Took abx for 3 weeks. Some OCD symptoms returned, but this is nothing compared to what we dealt with in the past. I also realized the Briova Rx was not adjusting DS dose with his weight changes. They always asked his current weight, so I stupidly assumed they adjusted it. Will be adjusted for next infusion in 2 weeks. This is the last IVIG that is approved for now. We saw improvements right away when he started weekly LD IVIG about a year ago, but after a couple, he would get worse after each infusion and take a few days to start improving...then he’d have another infusion, and regress. I did not like the weekly schedule. Once he started monthly protocol, we saw improvement after first treatment, and dramatic improvement after the second treatment (within days). Not sure if having the 12 (I think) weekly infusions prior to starting monthly impacted the success of the monthly infusions.

@bws1565 What symptoms improved using this? How long before you started seeing improvements?

This doesn’t directly answer your question, but I think a loose tooth would be considered an infectious trigger...from hidden bacteria being unleashed. My DS first severe onset occurred 48 hours after having dental work. He was given psych meds for 2 1/2 years, which made things much worse. He only began to improve after I found out about PANDAS and began treating with natural antibacterial and NAC. When my DS had his second and most severe onset, we saw limited improvement from natural antibacterials, but took 7 months to find a doctor who would try an abx. He became completely debilitated during this time. He no longer had an active infection (normal strep titers), but responded beautifully to Augmentin. It was miraculous. Unfortunately, the high dose was only prescribed for 30 days, and he declined. We were never able to recapture this recovery with abx alone. In the book Shadow Syndromes, one of the Stanford MDs talks about the difficulty “recapturing” the recovery from abx if they are stopped.

My DS 14 wasn’t diagnosed until age 12, but was told that his first onset was probably when he stopped eating solid food at age 14 months. He only would eat jarred baby food after that. This occurred after a virus. It took years for him to learn to chew after that.

@violet94 My DS now 14 never had strep that we knew of, but had high strep titers from time-to-time. He responded well to a 30-day high dose of Augmentin in 2016, even though his strep titers were normal at the time. When I say responded well, I mean went from being completely debilitated to being almost fully recovered for three weeks. It took 11 days to kick in, but was like a miracle when it did. Unfortunately, the doctor would not keep him on that dose, and symptoms returned on lower prophylactic dose. About a year later, another MD put him on Clarithromycin due to testing for Mycoplasma, and he responded well to that. As for interpreting that tests...sorry but I can’t help.

@beenthere My son also has a PANDAS/PANS diagnosis, but MD submitted IVIG request under AE. We paid out of pocket for one HD IVIG 18 months ago, because insurance denied. Current MD was able to get approval though. Initially denied, but ultimately approved. MD uses BriovaRx infusion service. They handle to appeal process. DS was most recently approved for monthly HD until the end of 2018 (7 HD treatments). This did involve a peer-to-peer call with insurance. MD said he may request more if there is regression after treatments end. Although not diagnosed until 2016, DS has been dealing with this since at least 14 months of age, when he stopped eating solid food following a virus. It seems the one-treatment IVIG protocol works when the child is diagnosed and treated right away. We recently added SBI Protect (Bovine IgG). I’ll let you know how that goes. It’s been less than a week, and I think it takes 8 weeks to see improvement. I’ve heard other parents describe similar products as IVIG in a capsule. I hope your son sees some relief soon. My DS was severe. He was completely debilitated. I thought this day would never come, but he’s doing great. I wish the same for you.

We did not see dramatic improvement for my DS 14, until he was put on the encephalitis protocol for IVIG, which is monthly HD. He has had 5 so far. This was started after limited success with weekly LD IVIG. He has shown lasting improvement with each treatment. Tics gone, OCD 90% gone. He still has anxiety, focus issues and sound sensitivity. We are hoping for some relief from those symptoms with future treatments.

@Clt_mama I had the recent epiphany that my son’s most severe PANS onset was caused by Miralax. He has been receiving monthly HD IVIG for encephalitis. His tics are now gone, as well as 90% OCD. MD agrees that Miralax triggered the encephalopathy. The irony is that even his constipation was misdiagnosed. He was having groin pain as a side effect of Metedate. He still has ADHD symptoms, anxiety and sound sensitivity. MD started him on SBI Protect to heal the damage of the Miralax. It’s only been 3 days, so I’ll keep you posted.

I am beside myself about what I read over the weekend about Miralax...that it has been linked to tics, OCD, aggression, hallucinations, etc. My son’s most severe flare completely coincides with the use of Miralax. How did I not know about this? It seems like it completely destroys the gut flora / immune system. So scary, because pediatricians continue to prescribe this for kids.

My DS14 sees Donald Raden, MD in Highwood, IL. He’s an integrative psychiatrist. He specializes in Lyme, but also treats PANDAS/PANS. My son tested negative for Lyme, although he was positive for Mycoplasma on & off. He’s treating him for Autoimmune Encephalitis, using IVIG, and herbal antiviral, antibacterial and anti parasitic remedies. He will do phone consults, I believe.

@Bttrfly1 DS did 1st HD IVIG with Dr. K 18 months ago. He does not take insurance and the surgical center he uses, did not take our coverage. We paid out-of-pocket. My new employer is self insured. They initially denied 12 weekly LD, but approved after written appeal. This included results of the Cunningham Panel. Doctor wanted to switch to monthly high dose, which was denied, but then approved after a peer-to-peer phone call with insurance. We are very fortunate for the coverage. We were on the verge of selling our condo to pay for treatment. 2 years ago, my DS was pleading with me to “figure this out and do whatever it takes to help him”. As for switching from weekly LD to monthly HD...it is the same amount of immunoglobulin over a 4 weekly period. Our integrative MD, generally recommends weekly LD, because it lessens the side effects (headache, nausea), but the way it worked for us was that after the LD infusion, it would stir up symptoms for a few days, then DS would begin to improve, and then it was time for another infusion, and symptoms would get stirred up again. The monthly HD is working out much better. My DS also is low IGA. He gets Gammagard immunoglobulin. I believe that’s best for low IGA. I don’t think Dr. K uses Gammagard. He uses the same for everyone, I think. I’m sorry you are frustrated with Dr. L’s office. She seems wonderful, but so many sick kids...hard to keep up. We are fortunate that DS’s integrative MD is very responsive to email.

@Buttrfly1 This is probably not what you want to hear, but my DS14 is showing dramatic improvement, only after IVIG protocol was changed to HD monthly. He’s had 4 so far. He had previously had 12 weekly LD (1/4 HD), but we didn’t see nearly as much improvement. He was a severe PANDAS/PANS case. He’s about 90% recovered. Still need to work on the psychological impact of missing out on 6 years of his childhood, though.

The first doctor to treat my DS (now 14) for PANDAS gave him 30 day high dose of Augmentin. She let us start before his blood work came back. At the time, he was completely debilitated by OCD and tics. He had no improvement for the first 10 days, but had dramatic improvement on day 11....and continued to improve rapidly for 3 weeks. Ultimately, when the labs came back his strep titers were normal. Most PANDAS / PANS docs know that a negative strep test does not rule out PANDAS. Also, the issue may be Mycoplasma Pneumonia (which entails a different antibiotic)...or could be strep and Mycoplasma.

My DS was also on Nystatin for a couple weeks, without any side effects. The Organic Acid Test is a urinalysis.

My son sees Donald Raden, MD in Highwood, IL. I’m not sure if tics alone could be considered PANDAS and I don’t know much at all about TS, but I assume your son’s tics could have a physiological cause. I know my DS’s tics decreased when treated for yeast. He also improved after taking an anti parasitic herb. Seems crazy, but it’s working. The Cunningham Panel (blood test) should show if there’s an autoimmune immune component, I think

My DS14 had severe PANS/PANDAS, and I would also notice that his tics and OCD would stop when he was sick. My theory (I have no medical background) was that his immune system was attacking the virus or infection, and instead of attacking his brain. As for having PANDAS ruled out...PANDAS/PANS was “ruled out” for my son by multiple doctors over a five year period. Most from a major Chicago children’s hospital. It wasn’t until he was diagnosed and treated by an integrative psychiatrist that he recovered. My DS had debilitating OCD and moderate tics...one of the most severe PANDAS/PANS cases of which I am aware. He has completely recovered from tics and 90% recovered from OCD, after monthly IVIG.