MaryAngela

My DS 13 (about 95 lbs at the time) was recently prescribed L-Glutamine. The dose for him was 500mg daily for 7 days, then 1000 mg daily for 7 days, then 1000mg 2x daily for 7 days, then back to 1000mg daily. He developed an eczema-like rash on his face, and doctor said to discontinue after 4 days, so I can’t tell you if it helped. He also had an IVIG treatment around the same time, so it’s possible the rash was a reaction from that. He’s seeing the doctor in July, and I will ask about revisiting the L-Gluamine. My DS had 7 tics...most of which went away from high dose antibiotics. The remaining went away after tonsillectomy, IVIG and yeast treatment. It’s the OCD that we are still struggling with.

My son does not have Lyme, and the Ozone helped somewhat. The Cunningham Panel has become the standard lab used to show there is an autoimmune component to OCD and tic symptoms. Based on the results of the Cunningham Panel, my son’s doctor is treating him for autoimmune encephalitis. Do a Google search on Cunningham Panel or Cunningham Panel PANDAS. You can probably search within this forum also.

Aaron— Have you considered Ozone therapy? Also, are you able to get the Cunningham Panel lab done? My son’s Cunningham Panel showed autoimmune encephalitis. He is improving from monthly IVIG treatments. He did 15 ozone treatments about a year ago also. It got rid of one of his major compulsions.

Newfie— My son was given a high dose of Augmentin over 2 years ago. His OCD and tics were off the charts. About 11 days in, he began to rapidly improve. His OCD and tics were almost completely gone by the end of the 30 days. Doctor didn’t refill right away, and he regressed, and we haven’t been able to recapture that success. By the way, my son’s Cunningham Panel showed autoimmune encephalitis even after abx treatment and 1 IVIG.

I am so sorry you are going through a crisis period. Here’s what I can tell you from my experience...Two years ago, we finally found an MD willing to prescribe abx for my DS (now 13). His case was severe. 10 days into the 30-day high dose of Augmentin, be began to rapidly improve. It was nothing short of a miracle. Unfortunately, there was a 10-day gap between the 30-day high dose and the prophylactic dose, and he regressed, and were never able to recapture the success of the first abx. That summer my DS developed a yeast infection, and his symptoms escalated. He was out of his mind...hallucinations, new tics, aggression. For the past two years we have treated him for yeast. We use Gutpro, Saccharomyces Boulardii, and Candicid Forte. We have also tried rx yeast treatments (Nystatin). Had a scary experience with Diflucan, though. Currently my DS is not on abx. When he takes them, it’s always a matter of time before it impacts his liver function, and has to go off. He’s using an herbal antiviral, and he has had many IVIG treatments the past 15 months.

lordchallen— I tried looking these up. I found Pro-Kids and I found Pro-15, but not Pro-Kids-15. Do you have a link?

I recommend the book, “The Explosive Child”. It’s not PANDAS specific, but it definitely can apply.

I agree with bobh. The first time my son was treated with abx for PANDAS, 5 of his 6 tics disappeared. Then a month later, he developed a new tic (facial grimace). He clearly had a yeast imbalance, as his bottom was red. The new tic went away after treating the yeast. We used Gutpro and Candicid Forte.

My son had the Organic Acid Test done about 18 months ago, which showed high yeast levels. He had been on antibiotics for 30 days +, a few months before. The doctor suspected that he had a yeast issue even before the antibiotics, based on his symptoms. Apparently, yeast can trigger tics and OCD.

Wombat140– I am new to this forum, but have read a few of your posts. Your suffering reminds me of my son’s suffering. My son is rarely open to talking about his compulsions, but after dealing with his OCD for years, I’ve determined that all of his rages were due to his OCD being “blown”. Telling him to quiet down only makes the situation worse. The consequence does not matter, even if it involves a neighbor calling the police. Part of my son’s OCD was that he would need me or my husband to do something, but his OCD would not allow him to tell us what it was. For example, when triggered, he would need to change his clothes, then leave our apartment building. I would need to hold the door open in a certain way, but he couldn’t tell me how. He would change his clothes and go in and out of the building hundreds of times a day. One night he repeated this compulsion continously from 7 pm until 7am. He would change his clothes and I would walk around the block with him. It didn’t matter that it was in the middle of winter. I truly didn’t think we would live through this. My son will tell me that he is not being manipulative. The way I see it is that his OCD is manipulating him, which sometimes involves needing others to behave a certain way. He is not choosing to have these thoughts. My son is 80-90% better, since IVIG treatments, which started this past November. I hope you find relief soon.

lordchallen— This is very encouraging information. Thanks for the post.

Thanks, Annieo. Although, I’m interested for my PANDAS son, I’m hoping when we make the commitment, it will be as a family.

Also, I believe my son has PTSD from all the years when his compulsions were treated as defiant behavior (even in therapeutic school and psychiatric units). I think that’s where he can’t handle being told “no”. As far as not being able to turn off the computer, if they have a so-called voice in their head telling them they need to do x,y & z before logging off, they may not be capable of doing it on command. I know it sounds like making excuses for the child, and it took me years to figure out. A good example would be my son playing on my phone in the waiting room of the behavioral therapist. The therapist would come to get him when she was ready. She would ask him to stop playing the game. His OCD was so severe at the time. He would have to go through many rituals before turning off the phone, which involved closing all the apps multiple times. The therapist would begin counting to five, which totally broke his concentration, so he couldn’t turn off the phone. Then he would be physically forced to the therapy room where he would be physically restrained. He would be out of his mind because he didn’t comply with his compulsions. I have so much guilt about bringing him there, and allowing them to do this to him. The good news is that he’s 80-90% better. Mostly from antibiotics and IVIG treatments. ....back to the book, “The Explosive Child”, the author says something along the lines of “Kids do well, if they can”. In other words, if they aren’t doing their homework or listening to you, they probably aren’t capable at that moment.

I found the book, “The Explosive Child” extremely helpful. I would recommend that both you and your wife read it. It discusses collaborative problem solving, but also that sometimes “giving in” to the child is the best option at the moment. It is not worth the child or someone else getting hurt. Unrelated to the book, my son has an OCD issue about being told “no”. He explains that is has nothing to do with getting his way. I think when he asks for something and he’s told “no”, it makes him feel “bad” or “greedy”. I need to be careful how I word my response. For example if he asks for ice cream before bed, instead of saying, “You’ve had enough ice cream today and it’s too close to bedtime”, I would say, “You may have ice cream after lunch tomorrow”. It took me years to figure out that most of his rages were due to someone interfering with a compulsion.

I recently watched a Joe Rogan podcast where Chris Kresser spoke at length about the Paleo diet, and even described an adolescent patient that had what seemed like PANDAS symptoms, and how he was cured by following this diet. I also recently watched a new documentary called “The Magic Pill”, which claims the Ketogenic diet is a cure to many diseases. Has anyone tried either or both for their PANDAS/PANS child? I’m wondering which is most effective, and which is most practical to follow. My son has an aversion to what he perceives as junk food, so eliminating gluten is not a problem. He won’t eat pizza, bread, breaded foods, chips, pretzels, etc. He will eat ice cream and yogurt, so I’d have to find a replacement. I know both these diets are a huge commitment, but I am extremely interested.

My DS 13 has been most impacted by OCD, but suffered from 6 tics from 2012-2016. Five of the 6 tics went away after 30 days on a high dose of Augmentin, and never returned. The 6th one went away in 2017 after a high dose IVIG, and never returned. He also did experience one additional tic temporarily in 2016 after the 30 days Augmentin. This was a facial grimace. This went away after treating him for a yeast infection. I’m recently discovering the huge impact of a yeast imbalance. I think PANDAS /PANS kids tend to have issues with yeast even before they are on antibiotics. I give my son Saccharomyces Boulardii, in addition to his regular probiotic. He also takes Candicid Forte.

My email address is: mshuminas@comcast.net Please contact me, if you’re interested.

Thanks, MomWithOCDson. I’ve been reading posts on this forum for over a year, but just joined this week. I am grateful for your frequent contributions. You have a lot of valuable insight.

I know there is a Facebook support page for PANDAS/PANS, but are there any in-person support groups or “Meet Ups” for PANDAS/PANS in the Chicago area? My DS 13 had his first major onset of PANDAS at 8 years old after a dental appointment (although we now believe his first onset was at 14 months old when he stopped eating solid food after a virus). We struggled for years to get a diagnosis and treatment. I would love to share information with other parents, regarding treatment, and how to recover from the trauma and years lost to this disorder.

My son had a strong aversion to the word “ok”. This particular trigger went away after he had a tonsillectomy. He had 100s of triggers, and is down to 1. His treatment over the past 3 years include antibiotics, tonsillectomy, IVIG, NAC, aggressive treatment for yeast, and herbal antivirals. We’ve discovered that yeast imbalance has a huge impact on his OCD symptoms. Saccharomyces Boulardii made a huge difference. He’s also used Candicid Forte. We tried some pharmaceutical yeast treatments. Had success with Nystatin, but Diflucan caused a dangerous dehydration issue.

My son uses Gutpro. I put it in smoothies, I make in the blender. I believe you can mix it with cold liquids and cold food.

Donald Raden, MD is an Integrative Psychiatrist in Highwood, IL. His practice is called the Raden Wellness Center. My son (age 13) has been under Dr. Raden’s care for 1 year. He saved my son’s life. He treats many young adults with PANDAS. My son’s case was severe.