Pezmom

Hi. I used to be active on the PANDAS discussion board years ago, but am back now. My three children ages 10, 7, 5 all have been diagnosed with PANDAS and are on prophylactic antibiotics. My oldest also received monthly IVIG for approximately a year and a half. The oldest and youngest have been diagnosed with Lyme as well and I just received my positive Lyme test this week. The children and I also have MTHFR gene mutation and the two oldest have a diagnosis of autism as well as many other comorbid conditions. I am going through a contentious divorce with their father who is fighting me all the way in regards to division of assets and child support/spousal maintanance. I am wondering if anyone else has experienced this and has helpful information I can provide to the mediator and possible trial judge if we are not able to reach resolution. I'm specifically looking for information on the longterm disability potential with Lyme. Anything you can provide will be helpful. I will read other posts for information about seeking treatment for me. Since my kids are already on Ceftin for PANDAS, we have been assuming that is treating their Lyme as well. It's time for me to really start attacking the Lyme now. Thanks so much for your help. Jena

There have been so many, but the all time most stupid has come from my mother on several occasions, "All you have to do is pray and he'll be healed." Seriously wish I had thought of that in the last 4 years of meltdowns, anger, aggression, suicidal thoughts (my child's), 2 1/2 years of antibiotics, 2 years of IVIG, countless doctor consultations and hundreds of hours of research, not to mention watching self-esteen suffer and his brain capacity be annihalated. Now that my other 2 have high numbers on their Cunningham tests and the entire family is on antibiotics, I'll figure out and finally say a prayer. Hadn't thought of that, mom. Gee thanks.

I haven't posted in over a year. We lost our son to PANDAS just over 2 years ago, but were able to bring him back 80% with Ceftin and Valcyclovir on a daily basis as well as biofilm protocol and monthly IVIG. For awhile, we were able to push the IVIG out to every 7 - 8 weeks, then symptoms would reoccur and we had to go back to every 4 weeks. A few months ago, we made the mistake of changing his antibiotic and lost him again for a couple of weeks. We switched back to the Ceftin, but haven't been able to recover. His anxiety and violent reactions are now so bad, we must place him on a medication to control his anger so his younger siblings are safe and we can preserve his self-esteen - what's left of it. I have come to this place very reluctantly (he's 9 and has had the PANDAS diagnosis for bearly 5 years) and only want to consider it on a temporary basis as I know it's the PANDAS (or PITAND of Lyme or whatever) that is causing these behaviors. I have to keep my other kids safe. I know some medications are worse for kids with PANDAS. Does anyone have advice for me on specific ones to avoid and anything we can ask for. We already do Ibuprofin and have Prednisone, but that wires him even more at night. As it is lately, he often wakes up between midnight and 2:00AM and is up for the night. I'm going to give him the activated charcoal today. Our doctor wants us to try him on Aztrionam in addition to the Ceftin. He's very sensitive to phenols which makes some of the natural supplements difficult. I'm open to any suggestions at this point in an effort to save my little boy and my family. Thank you for your help and understanding. Jena

Brian - Is your plan an individual or group plan? If it's a group plan, you can have your HR Benefits person call the insurance company directly or they can have your broker or consultant call. That should get you almost immediate results. So sorry you haven't been reimbursed yet and that the exacerbations keep happening. Same situation here with symptoms coming back, except we are much better off than we were before the first IVIG. When it seems like it's going to be a rough day, we give our son Ibuprofin and it calms things down. It's definitely a problem with inflammation here. Keep up the faith and don't forget to post updates. Jena

We received coverage for 6 rounds. It is through a major carrier and we have very comprehensive coverage.

So was that 2 gm/kg dosing? Buster It was close to that, yes, over the 2 day period. With Dr. K's protocol, it would have been closer to 40 grams total for the two days.

We did a steroid burst 3 months prior to the IVIG and saw benefits, though not profoundly so. The changes post IVIG were definitely greater than those after the steroid burst.

Hi. We've done IVIG for our 7 year old son. It has helped alleviate many of the symptoms PANDAS caused, but has not completely taken care of the problem. We definitely saw improvement (miraculously so at first) and then had an exacerbation a couple months after the first IVIG. I'm glad we did it as it has definitely helped, but I wish I had gone into it with a clearer idea that it was going to give us benefits, not necessarily a complete cure. Our son had TS, tics, OCD, anxiety, ADHD, rages, meltdowns, and all kinds of other PANDAS fall-out. We are only a little less than 4 months out from that first IVIG infusion. So, I'm assured we could still see additional healing. This is just our situation. Other people have said that the IVIG was a cure for them. We consulted with Dr. K, but did not do our IVIG through him. I asked him in our consult whether it was necessary to come to him in Chicago for the procedure and he assured me that it was not. We did basically follow his protocol, but did it here at home with a visiting nurse service. By having it here at home, the bill for that first visit with 25 grams two days in a row was "only" $5500. Our DAN! doctor ordered it. Dr. K has been wonderful about answering my email questions even though we only did the intial phone consult with him. We did receive insurance coverage for the IVIG, but did not mention the term PANDAS to the insurance company. It was called an autoimmune disorder and we sent labs to their nurses for review.

And then there is my son who was on a gluten-free diet (also casein, corn, and soy-free) as well as antifungals, probiotics and glutathione for years before PANDAS knocked him out. We also feel it's not just PANDAS, but could be PITAND for him as any infection seems to trigger this, not just strep. Pat - we haven't tried Kefir as I asssumed it was out based on casein and he's got a coconut sensitivity as well. I will look into it. Maybe it's time to change his probiotics as well. I'm so frustrated by all of this (as I know you all are) and just want to figure it out. We've been treating his gut for years and all the other underlying problems we've uncovered, antibiotics clearly make a difference, and the IVIG is obviously bringing the inflammation down; but it's only temporary. I want to get at the root of what's causing the inflammation in the first place so I can help my son and stop medicating him so much. Argh! Thanks for the suggestion. Jena

Dr. John Green in Oregon City, OR may be the nearest doc for you. I've heard from a couple of people lately that Dr. Stephen Glass, a well-respected Pediatric Neurologist in Woodinville may be starting to diagnosis some PANDAS patients. He's at least open minded.

Our son weighs 55 pounds and takes 250 mg of Ceftin 2 times per day. He was originally diagnosed with PANDAS at age 5 and our doctor would prescribe a 5 day course of Zithro whenever we had a PANDAS episode (these were very mild with slight tics and impulsivity - I didn't know enough about PANDAS at that point to know what else to look for). Last summer, he was on Zithro at least a couple of times and the PANDAS stuff wasn't going away. So, our doctor had him on Zithro every three days with no change, and then upped it to every day. While he was on the daily dose of Zithro, our worst PANDAS episode occurred which caused all of the cognitive changes, full Tourette's, OCD, ADHD, impulsivity to the point that he had to be removed from school. We did a 10 day round of Ceftin and saw improvement and then tried Zithro again for a week. Symptoms increased again and that's when we went to the Ceftin daily. He's been on it ever since. I've posted previously that I think the disodium EDTA given with an enzyme an hour before the Ceftin helps the antibiotic to work better. When we added the EDTA, we saw gains and then lost some of those gains when we decreased the EDTA. We are now giving it two times per day and also give him zinc at night. He's also been on Low Dose Naltrexone lotion at night for at least 2 years. Our younger son (age 4) showed some signs of PANDAS a month ago (at the same time as our 7 year old's newest regression), and we treated that with a 10 day course of zithro. Our doctor now has the younger guy on Zithro every 3 days. I found out later that he was getting gluten at school during that same time period and he's also developed an extreme sensitivity to phenols. So, I honestly don't know if it's the gluten, phenols, PANDAS or a combination. I'm going to take him off the zithro soon and see what happens. I hate having them on antibiotics. If I had known all this was in my future, I definitely would have gone to Medical School or become a scientist.

We were actually fortunate (an understatement, I know!) to have insurance coverage for 6 rounds. Our doctor simply sent in our son's lab results and the insurance company approved it. We decided to take advantage of the full course of treatment to try to completely knock PANDAS out. Diana P. left me a message the other day asking for my son's lab info in an effort to determine why our insurance company provided coverage. I just haven't had a chance to pull out his hefty medical file to dig for that info yet. I'm still going to get it to her. I obviously don't want to rock the boat with the insurance company by calling them to ask why it was covered. I do know that we never mentioned PANDAS, just let the labs speak for themselves.

Even though this didn't strike a cord with others, I thought I would still post an update. We saw the developmental Opthamologist today. Since PANDAS, our son's vision has changed from 20/20 to 20/60, he's gone from farsighted to nearsighted, and his eyes are no longer working together. He had previously finished vision therapy (over a year ago) and now we have to start back to doing it again. An interesting twist is that his PANDAS symptoms are much improved the last couple of days (amazingly so) and he announced this morning that his vision wasn't blurry today. So, even on a good day when he's saying his vision is improved, we have these documented eye changes. The doctor wants me to bring him back in if things flare again so we can see what happens with his eyes when PANDAS is doing damage. Of course, I'm hoping that doesn't happen. This improvement in PANDAS symptoms was predictable to me. Each time we do IVIG, we have about a week of difficult times and then things improve dramatically for a few weeks. Still trying to figure out all the pieces to this darn puzzle. Jena

We've been slowly brining our son back from a severe bout with PANDAS in the Fall. He's now had 4 rounds of IVIG and has been on Ceftin daily since September. As I posted previously, he was approximately 75% recovered from the injury when we had another smaller round of PANDAS a month ago. Things are improving again, but as the smoke clears I'm noticing other changes I hadn't noticed previously. Specifically to do with a very negative attitude and vision changes. He has become a very negative person (at 7). Everything "sucks" and he automatically goes into a negative tirade when anything upsets him. I had been thinking this was due to his frustration with PANDAS changing his life and requiring him to be homeschooled this year, but had a thought last night that it could be due to brain injury. I've read about negative personality changes due to brain injury. What do you think and have you seen this in your kids as well? I'm not talking about the rages as we've definitely had that as well. I'm talking about an overall negative outlook on life and negative response. Is this something we can hope he'll recover from as well as the inflammation goes down? Also, I've noticed he has to stand close to the TV now in order to see it. I asked him if his vision has changed and he said it has. I've got to get him into the Opthamologist, but am wondering if anyone else has seen vision changes. It also makes sense to me that brain injury due to PANDAS could have caused this. Thanks again for any info you all can share. This is a long and frustrating journey. Jena

Jena - how is he doing now? I just wanted to say that I have found something that has made a world of difference in my daughter. It's as simple as giving her just 3 or 4 drops of oregano oil (dissolved in juice) morning and night. It's more effective if they could tolerate it under the tongue, but that's asking a lot of little ones. You would probably want to continue it for several months to really see a lot of benefits, but I have already seen some in a short time - it is a very potent anti-bacterial (as much as some antibiotics but without causing resistant strains of bacteria to form), it is also a strong anti-viral and anti-fungal, so if the behaviors are coming from something else (like an overgrowth of pathogenic organisms in the GUT), this will take care of it. Even if he doesn't have any of those issues, it boosts the immune system and there are no side effects - so what do you have to lose? Try it and let me know. Pat Pat - Thanks for the idea. Unfortunately, our son has an extreme sensitivity to phenols and that's one that will likely send him through the roof. I've already discussed it with his doctor (also nettles which fights inflammation), but we've decided to steer clear for now as it would likely worsen things rather than helping. I really do appreciate the info though. He's somewhat improved, but is still pretty volatile, tics and Tourette's are there, his feet and hands are a mess as that's his OCD thing - picking, sleep is disturbed. My four year old is suddenly (last Friday and again yesterday) exhibiting some of the symptoms and that is exacerbating my oldest son's reactions so it's hard to tell how much improvement there is at this point. Now my 4 year old is on Zithromax for the next week and we are going to see what happens. We have our fourth round of IVIG scheduled for my older son next Friday. I'm going to email Dr. K and see what he thinks of the fact that we've been continuing the IVIG and the dosage as well as what I'm seeing with my younger son. Thanks again for the input. Jena

Yes.

I just sent the link to the PANDAS TV segment done a couple of weeks ago to the Oprah show asking them to do a story. If others write as well, we may get them to listen and do a story. You can share your story idea at https://www.oprah.com/ord/plugform.jsp?plugId=216. Thanks. Jena

EAMon - Thanks for pushing me to post an update. I've been meaning too, but it has been a pretty difficult week at our house. Our guy is doing better, but still impaired from where he was even last week. I think what happened was a combination of factors (although it's pure conjecture at this point). We had previously had our son on Disodium EDTA to help the antibiotic work and also on Amantadine as an anti-viral (with some potential benefit for ADHD behaviors as well). We backed the EDTA off to one per day a few weeks ago and also dropped the Amantadine to one based on concern over some heart pain and palpations. In addition, my two little ones came down with a stomach bug early this week. So, I think it may have been a combination of those factors. Since we increased the EDTA and Amantadine on Monday, he's improved, but still has some residual differences that had previously gone away. He has a flag football game this afternoon and I'm on pins and needles wondering how he's going to do on a football field with 26 other 7-8 year old boys. Eek. It could also have been any of the things you've listed above. I just don't know. I do know that we've seen a significant improvement since Monday. I have to lower the Amantadine again as he's complaining about heart issues now since we increased it. I do wonder about what the Lyme diagnosis does to impact all of this. And like another mom who posted about PANDAS and Lyme, our guys original diagnosis was Aspergers. My 4 year old has been having completely uncharacteristic rages this week and now I'm really wondering about PANDAS and him. We've just had him tested for Lyme as well. I wish I had more answers. It feels like a war zone here this week. The post about the short term memory being affected really shed some light for me. I appreciate all of you so much. Jena

Sorry that I've been away from the forum for a bit. Enjoyed some time away with my daughter visiting family. Ty's LD was not originally detected through the Alisa or WB test. The initial testing was conducted by Quest Diagnostics (the insurance specified lab). The initial round of testing was reluctantly consented to by the first pediatrician, who we had seen for 16 years, 13 of those with my son - 16 with my daughter. The initial pediatrician wanted to treat his OCD behaviors with an anti anxiety medication without running any tests. Due to the rapid onset of his symptoms, my husband and I neither one felt this was the correct approach. A bit like putting a band-aid on an open wound without determining the underlying cause. We insisted that she perform a Lyme test and after the initial drawing of blood and a botched test (the lab failed to perform the requested testing), the pediatrician's office ended up adding on the Lyme test and used the same blood sample that had been drawn the prior week (not a fresh sample). I'm not sure if this would have altered the results, but in my heart I believe it is a strong possibility. First Lyme test came back with 3 reactive strands (not enough to render a positive test according to CDC standards). After getting an inconclusive test from the first round of testing, compounded with the lack of compassion and understanding from the doctor, we switched pediatricians. We knew that my son had been bitten by a tick in June (we pulled the tick off of him) so we continued to press for a Lyme literate pediatrician. After treating him for a month with Augmentin and not seeing a change in his symptoms, the second pediatrician suggested another Lyme test. At this point, we requested that the blood be forwarded to a Lyme lab (Igenx in California). She then referred us to a specialist (infectious disease doctor). He tested for LD and the test Western Blot came back with 9 reactive IGG strands. Now that we've been diagnosed as having LD we were going through the regime of Lyme treatment, when the psychological symptoms really went haywire. Before knowing about PANDAS I just kept telling friends and family that the Lyme seemed to now be affecting my son nuerologically. Now it seems that we have a possible situation with PANDAS. It is a bit disheartening because as with LD it seems that there are no hard and fast rules/tests for diagnosing PANDAS (also a clinical diagnosis.) I will continue to seek information regarding links between LD and PANDAS. After reading many of the posts here, it seems extremely likely that there is some connection, even if its as simple as just being similar to one another. Hope this helps P.Mom Mom2Ty - How are you guys treating the Lyme? Just curious. My little guy also has the Lyme diagnosis on top of PANDAS and Aspergers.

We've been watching our son's brain recover over the past 7 months. After the worst of his PANDAS episodes in September, numbers looked like a foreign language to him and I had to re-teach him basic math facts over and over, he had ADHD behaviors for the first time and couldn't sit to learn or focus, his handwriting was horrible and he would resist even writing a couple of words, he would sit in front of legos wanting to build, but not being able to put his thoughts into any structures. Previously, he had tested in the gifted range in all areas and in November, his math was average and his cognitive (processing) skills were well below average. As of last month, he was loving learning again and asking to play math games, could write several sentences at a time beautifully (although still with some resistance since he associates writing with difficulty), and was back to making beautiful, elaborate structures with legos. His tics and Tourette's symptoms were completely gone. I posted about another bout we've been having this week which has thrown a wrench in his recovery, but we did watch him come back from what I would call some pretty significant injury. I'm praying we continue to see recovery. Homeschooling hasn't been easy (I have a 4 and 2 year old also), but it was right for him this year. I don't see how he could have functioned and learned in a large class this year and was most concerned about his self-esteem. We want him to continue to feel good about himself and to continue his desire to learn. As long as I keep the curriculum interesting, he likes homeschooling. We also have him enrolled in several classes with other homeschooled kids. I've found great resources online and there are tons of homeschool groups you can be a part of for lots of social time. We've decided he needs a regular classroom setting with a small number of children and lots of understanding for next year so are hiring a teacher with a few other families to have our own school. I think it will actually be safer for him as well as I'm worried about all the things he'll be exposed to if he's in a large school next year. It's certainly not just strep that triggers the PANDAS for us. Overall it's been a good situation for us and I've enjoyed it.

Does he not want to do it or is it truly more difficult for him which is causing his resistance? We run into that with our son too. When he has a PANDAS episode, his handwriting and ability to process numbers tanks and he shows major resistance to school work because he knows it's more difficult for him. And, it takes awhile for his brain to recover and be able to process and learn and write again. We've been home schooling this whole year because of PANDAS and are now looking at starting our own "school" or at least homeschool coop for next year to accomodate the changes PANDAS has brought about. Our son was also in an academically challenging private school doing great last year. Can you work out a deal with the school and your son where he still does the work, but dictates to you and/or get them to agree to back-off on the homework and some of the math for now? Your son's brain has likely been injured by the PANDAS and he's in a different place as far as learning goes now.

Hi Linda. Thanks. Dr. K consulted, but didn't do the IVIG. The first round was 25 grams two days in a row for a total of 50 grams. My son is 55 lbs. So, it was a little higher than Dr. K would have done. The second and third rounds were just 25 grams each. We saw huge gains with the first round, some with the second, and the third round was just 10 days ago and now this has happened. As far as I know, we aren't fighting any bugs in the house and our son doesn't have any sign of illness.

We have done three rounds of IVIG and our son has been on antibiotics since September. Late last week, I could see the PANDAS slipping back and now today he's got full-blown Tourette's again, the impulsivity is back, ADHD symptoms worsening. No increase in OCD and anxiety yet, but I'm worried. Any advice? Our doctor was concerned about having him on the oral disodium EDTA any longer and we stopped that 3 weeks ago. It's plausible that taking the EDTA away allowed the biofilm to protect the bacteria from the antibiotic or has the Ceftin lost it's potency just like the Zithro did in the past? It's so frustrating to watch this happening again as we've made so many gains since September when we feel he was stolen from us. I've got an urgent call in to his doc, but wanted to reach out to this group since you all get it. Thanks in advance for your support even it it's just through supportive thoughts and prayers.

Our son has been on LDN (in a lotion form) for 2 years. When we first started it, we noticed an almost immediate improvement in his ability to interact with people. I remember him walking in on Easter and asking my sister-in-law how her concert had been. He had never before shown that kind of interest in someone's life. We were using it as a part of his DAN! biomedical autism treatment. It's still a part of his treatment today.