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MaryAngela

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Everything posted by MaryAngela

  1. As a side note, my son responded well to Nystatin, but had a dangerous dehydration side effect while taking Diflucan. Be aware if she starts asking for crazy amounts of water.
  2. If you are looking for a doctor, my DS has been under Donald Raden, MD’s care for just over a year. He is in Highwood, IL. He is an integrative psychiatrist, and specializes in Lyme (although my DS tested negative for Lyme). He also has treated many kids and young adults for PANDAS/PANS. I believe he will do phone consults. My son has his IVIG at home. The infusion service will go to Colorado, but there may be an issue if it’s not prescribed by a Colorado doctor. Dr. Raden will sometimes use conventional psychiatric meds (at least short term) and antibiotics, but ultimately seems to use herbal treatments. My DS is using herbal antiviral, antibacterial, anti fungal and anti parasitic remedies. I can’t believe how well he is doing. I thought this day would never come!
  3. Hi Amy— My DS (almost 14) has suffered from PANS for 10+ years. We believe his first onset was when he stopped eating solid food at age 14 months, after a virus. He continued to have what we now recognize as PANDAS/PANS symptoms until very recently. At age 8, he had an overnight onset of severe OCD and moderate tics. He was treated unsuccessfully with psychiatric meds for 2+ years. He had a 7-month reprieve from symptoms at age 10 1/2, using NAC and other vitamins and supplements, but at age 11 symptoms returned, even worse than at age 8. His symptoms were as bad as the worst PANDAS case I’ve ever read or heard about. Finally got diagnosis at age 12. He had tonsillectomy and HD IVIG at 12 with limited success. Less than one year ago, he had a positive Cunningham Panel. Again, this was more than 10 years after first onset, and even after 1 IVIG. It was a struggle, but he has been approved for 6 monthly HD IVIGs. Apparently this is the protocol for Autoimmune Encephalitis. He has had 3 already. He is about 90% improved. It is nothing short of a miracle. By the way, our current doctor theorizes that the IVIG he had 18 months ago was not lasting, due to an active Mycoplasma Pneumonia infection.
  4. Before I knew about PANDAS, my son had dental work done in 2012. He had sensory issues since he was a baby, but was excelling at school, socially, etc. He had just turned 8. Within 48 hours of his dental work, he developed severe OCD and moderate tics. His psychiatrist at the time said it was highly likely triggered by the nitrous oxide from his dental work. She later threw that theory out when his B12 levels were normal and the symptoms continued. He was treated unsuccessfully for OCD with psychiatric drugs for the next 2 1/2 years. I told our story to Wendy Nawara at PAS.CARE, and she informed me that a common trigger for PANS / PANDAS is bacteria “unleashed” during dental cleaning or dental work. I believe either the PANDAS Physician Network or PANDAS Network has guidelines for preventative abx before, during and after dental appointments. I believe it’s full strength. My DS’s current psychiatrist put him on HD Augmentin for 1 month (starting a week prior) for his last dental appointment.
  5. I apologize for the delayed response. It was bright red and ring shaped. I suppose like a baby.
  6. Just a couple random thoughts... Has your DD been tested for Mycoplasma Pneumonia? My DS 13, who also went undiagnosed for many years, responded well to Augmentin for awhile a couple years ago, then it stopped helping. He tested positive for Mycoplasma Pneumonia and responded well when the antibiotic was switched. He also responded well when we added an herbal antiviral. Also, are you treating for yeast? After the initial successful of the high dose Augmentin (which worked like magic for awhile), my DS began to decline rapidly, but improved when treated for yeast. We use Saccharomyces Boulardii in addition to regular probiotic, as well as Candicid Forte. Does your DD’s psychiatrist not work with IVIG? My DS’s IVIG has been ordered by his psychiatrist. This doctor uses an infusion company and the nurse comes to our home. Lastly, my son has been receiving monthly IVIG for the past 3 months. This has gotten him about 85% improved. Again, this has worked like magic. He was doing one of his remaining compulsions (changing his clothes) about 40 times a day. After HD IVIG, he stopped this behavior immediately, but it returns after 3-3 1/2 weeks (soon before the next IVIG is scheduled). At last appointment, doctor said there must be a reason IVIG isn’t lasting, and he had DS start an herbal anti parasitic. Dose was 10 drop 2x daily. Gave DS 10 drops first morning, and DS became very agitated and then sleepy. Doctor said to slow it down, and we worked up to 5 drops 2x daily so far. At the risk of sounding like a nut, we are seeing a big improvement. DS keeps saying, “I feel great. My worries are going away”. My son’s case was severe and spanned many years. OCD symptoms you would not believe, if you didn’t see. I feel like we are witnessing a miracle before our eyes. One more thought... Did your DD’s decline coincide with dental cleaning or dental work?
  7. I don’t have any experience with steroids, but are you asking whether the Cunningham Panel could be positive after abx treatment and tonsillectomy? My son had a positive Cunningham Panel after both. I am so sorry you continue to suffer.
  8. Please don’t lose hope. Although we very recently have been able to get IVIG covered for my son, his doctor (Integrative Psychiatrist) feels the long term solution is treating yeast, bacteria, viruses and parasites simultaneously. We’ve been treating yeast for awhile, and using an antiviral herb for a few months. We just added the herbal antibacterial this week, and he said to stagger the start of the anti parasitic. I don’t tell my son when we make a change. When I started the antiviral, I put it in his fruit smoothie. On the fifth day, he asked if I was giving him a new supplement, because he felt much better. I’m estimating that these remedies cost about $200 a month. I will keep you posted with my son’s progress and will personal message you what he is taking, if you like. I’m sorry your parents are not supportive, and you feel alone in this. I have close friends that have distanced themselves from me because they don’t understand why we are not using conventional medicine to treat our son. It doesn’t matter that we treated with conventional medicine for 2 1/2 years, and he became violent, suicidal, angry, negative, hateful, jealous and revengeful. They attribute his recovery from OCD and tics after IVIG, abx, and herbs to be coincidental. I am glad you have your gran for support.
  9. Yes, it sounds like PANDAS...and miracles do happen. My son saw his psychiatrist in person this week for the first time in 10 months, and the doctor said that his progress is a miracle. Again, he has been doing monthly HD IVIG since May 2018. The doctor said that we need to find something for the effects of the IVIG to be longer lasting. This doctor does not use prophylactic abx, like Dr. K. If you do long term abx, it is imperative to aggressively treat yeast. My son was completely out of his mind from a yeast imbalance in the past. Also, please do watch “The Magic Pill”. I am a hypocrite, because I haven’t implemented the diet yet, but I feel diet is the long term solution to my son’s health issues. He already has an aversion to junk food, but I feel he may be sensitive to corn and other ingredients. Also, there are recent studies linking infection and inflammation to all OCD (not just with kids). I’ll try to find the link. Most medical professionals are so behind on research regarding mental health issues. They probably assume your theories were concocted by your OCD. Keep me posted.
  10. My son’s case was severe. We were in a very dark place multiple times, sometimes lasting over a year at a time. Looking back, I don’t know how we survived. What kept us going were those times of reprieve, like you experienced after your tonsillectomy...showing that there is an answer out there...but just needing to figure out how to sustain it. My son responded well to tonsillectomy, antibiotics, NAC, IVIG, but nothing with complete and lasting results. He is now receiving monthly HD IVIG at least until the end of the year. His tics have been gone for the most part for over a year. His OCD improved somewhat after 1st IVIG, but it wasn’t lasting (that is why I recommended testing for Mycoplasma Pneumonia first). His OCD is about 85-90% improved, but he still has major sensitivity to sound and odors, still has anxiety and focus issues. He just started an herbal antiviral and an herbal antibacterial. We plan on trying either the Paleo or Ketogenic diet soon. Watch the documentary “The Magic Pill” (currently on Netflix). It is amazing the impact diet has on physical and mental health. Also, Joe Rogan has a regular guest on his podcast, Chris Kresser. He promotes the Paleo diet and once used a specific example of a child with PANDAS symptoms (although he didn’t call it PANDAS) that was cured using the Paleo diet.
  11. I believe people (including kids) with autoimmune issues are prone to having a yeast imbalance. I’m not sure of the direct cause.
  12. This does not answer your question, but be sure to test for Mycoplasma Pneumonia prior to IVIG. My DS had his first IVIG with Dr. K, who had only tested him for strep. We didn’t see the improvement we were expecting from that treatment. Another doctor found a Mycoplasma Pneumonia infection. As for age, I believe Dr. K has successfully treated adult PANDAS patients. My DS is almost 14 and had debilitating PANDAS. He has shown dramatic improvement from IVIG, and we believe his first onset was at age 14 months. So although he is not near your age, he went untreated for over 10 years. Since IVIG is used to treat other autoimmune disorders and encephalitis for adults, it seems like you would benefit no matter what your age is.
  13. The first time he was put on antibiotics for PANDAS, he had a liquid, and I’m not positive of the dose, but remember it was 3x daily...I believe the equivalent of 500 mg 3x daily. It was not the XR. The following 18 months, we had some success on & off with antibiotics...Augmentin (875 mg 2x daily) and Clarithmycin. He started monthly HD IVIG recently. So far he’s been getting about 90% better after IVIG, but starts tapering off after 24 days. He has another IVIG this Sunday / Monday. Hoping the results are lasting this time...at least until the following one. Again, he was almost symptom free for over 3 weeks immediately following the last IVIG.
  14. My son took just Magnesium, but you’re right...I believe there is some benefit to taking it with calcium.
  15. My DS 13 received 16 weekly LD (1/4 of HD) starting last November. It was extremely frustrating, because he would flare for 3-4 days, then start getting better, but would flare each time he had the treatment. In May of 2018 he had a HD. Huge improvement, which lasted about 6 weeks, then he began to decline. Had another HD two weeks ago. It was like magic. Immediate improvement. He will now receive monthly HD until the end of this year. Apparently, this is AE protocol. Could take 18 months. He is about 80% improved. His symptoms were severe.
  16. I believe tics may be brought on by a yeast imbalance. Maybe try Saccharomyces Boulardii along with her regular probiotic. My DS also take Candicid Forte to control yeast. Risperdal did not help my son’s tics...just made him agitated.
  17. I switch between Gutpro and a Jarrow brand probiotic. Also use Jarrow brand Saccharomyces Boulardii. Yes, I think it’s ok at same time as NAC and taurine. My son hates taking supplements, so I do everything all at once...maybe not ideal. The NAC is supposed to be split up throughout the day. Unfortunately my son is not taking as much as I’d like. One of his triggers is taking supplements.
  18. Have you ever tried NAC? My son had an almost complete remission of symptoms that lasted 7 months once. This was in 2015. We were using a high dose of NAC. He was taking 900 mg 3x daily. At that time, he also took fish oil, a high dose of B6 and magnesium. He probably only weighed 65-70 lbs then. Dose is probably much higher for an adult. We saw dramatic improvement after 3 weeks.
  19. Wombat140– I am sorry that you are still suffering. We felt hopeless with my son’s situation, but he is much better now. You’ve mentioned that you don’t have access to IVIG. My son did benefit from a very low dose of Prozac while we were waiting for IVIG. We had tried it in the past and it was disastrous. Last year we tried it again, but at a very low dose, and he had an almost immediate benefit. The key is that he cannot tolerate the “therapeutic” dose.
  20. My DS 13 developed additional tics at age 11, due to yeast overgrowth. Kids like ours tend to have a yeast imbalance already, but the antibiotics exasperate it. We use Saccharomyces Boulardii, along with his regular probiotic. My DS also takes Candicid Forte.
  21. This doesn’t really answer your question, but we tried Oil of Wild Oregano for my son about 2 1/2 years ago. I remember reading that it was important to use oil of wild oregano vs. oil of oregano. I don’t recall where we determined the dose, but I believe we were giving him 16 drops 3x daily. It is really hot (feels like it can burn your mouth). We gave it to DS in orange juice. Since my DS complained so much about taking it, we only used it for a month. During that time his OCD symptoms went from a 10 to a 7. My husband interpreted that as not working, but looking back I realize that it was effective...and possibly would have been more effective if we continued. The drops we used, by the way, were not diluted with olive oil or anything.
  22. The yeast treatment was prescribed by an integrative MD (psychiatrist). The OAT (Organic Acid Test) is a urine test that shows yeast levels, I believe. I also think stool analysis may show yeast levels.
  23. Ask the alternative doc about the OAT test (Organic Acid Test). It’s a urinalysis that measures yeast and maybe ammonia levels. I know yeast can impact tics.
  24. My son takes Saccharomyces Boulardii (we use Jarrow brand) along with his regular probiotic (we use Gutpro). He also takes 2 capsules of Candicid Forte 2x a day. His doctor also prescribed Nystatin for about 3 weeks once. He also tried Diflucan, but experienced a really scary dehydration side effect.
  25. 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.
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