Pezmom Posted April 13, 2009 Report Share Posted April 13, 2009 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. Link to comment Share on other sites More sharing options...
lss Posted April 13, 2009 Report Share Posted April 13, 2009 Jena, So sorry to hear that your having a difficult time again, and was curious to know if Dr. K in Chicago had done the IVIG? If not was it done at a high dosage as Dr. K does or was it at a lower dose? Linda Link to comment Share on other sites More sharing options...
Pezmom Posted April 13, 2009 Author Report Share Posted April 13, 2009 Jena, So sorry to hear that your having a difficult time again, and was curious to know if Dr. K in Chicago had done the IVIG? If not was it done at a high dosage as Dr. K does or was it at a lower dose? Linda 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. Link to comment Share on other sites More sharing options...
pmoreno Posted April 14, 2009 Report Share Posted April 14, 2009 Jena, So sorry to hear that your having a difficult time again, and was curious to know if Dr. K in Chicago had done the IVIG? If not was it done at a high dosage as Dr. K does or was it at a lower dose? Linda 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. I am also very sorry to hear the bad news. It makes me wonder if IVIG is not really more than a quick bandaid. It seems to help right away and dilutes some of the wild antibodies, but then (depending on exposure to viruses, bacteria, etc, things can flare right up again) It seems like they need continuous immune regulation. This is why I'm trying with the LDN - they have to continue it to receive the benefits of immune regulation, but it's easier on the system (and the pocket book) than IVIG on a long-term basis. Link to comment Share on other sites More sharing options...
dcmom Posted April 14, 2009 Report Share Posted April 14, 2009 I read somewhere (sorry I cannot find it again) of a researcher who thinks pandas patients need IVIG frequently. I agree, from a lot of stories on the forum, it sounds as if pandas is a treatment, not a cure. That being said, the daughter of a friend receiveds monthly IVIG treatment at home for an asthma related condition. Her insurance covers it, and she says compared to the relief it has given her daughter, it is nothing. I am beginning to feel that something more along the lines of that treatment would be helpful. The only problem is th #### insurance companies. I haven't approached mine yet for IVIG, and am not sure how to go about that... Link to comment Share on other sites More sharing options...
pmoreno Posted April 14, 2009 Report Share Posted April 14, 2009 I read somewhere (sorry I cannot find it again) of a researcher who thinks pandas patients need IVIG frequently. I agree, from a lot of stories on the forum, it sounds as if pandas is a treatment, not a cure. That being said, the daughter of a friend receiveds monthly IVIG treatment at home for an asthma related condition. Her insurance covers it, and she says compared to the relief it has given her daughter, it is nothing. I am beginning to feel that something more along the lines of that treatment would be helpful. The only problem is th #### insurance companies. I haven't approached mine yet for IVIG, and am not sure how to go about that... The reason they don't pay is because of the off-label use. It hasn't been proven in research trials and approved as a treatment as yet. Link to comment Share on other sites More sharing options...
EAMom Posted April 19, 2009 Report Share Posted April 19, 2009 Hi Jena, how is your son doing now? a couple things I was wondering.... 1) could your son's symptoms be part of the "turning back the pages" that Dr. K. talks about? 2) could the Lyme's dz be affecting his immune system and response to IVIG? (I think you mentioned lyme in another post) 3) maybe he just needs more time? I remember diana (or someone) saying the IVIG might take several months to take effect, even a year. One comment about IVIG...the immunologist we are seeing did say IVIG is extremely anti-inflammatory. That may be why (although I don't know if it is the only reason) why it helps PANDAS kids. Link to comment Share on other sites More sharing options...
Pezmom Posted April 19, 2009 Author Report Share Posted April 19, 2009 Hi Jena,how is your son doing now? a couple things I was wondering.... 1) could your son's symptoms be part of the "turning back the pages" that Dr. K. talks about? 2) could the Lyme's dz be affecting his immune system and response to IVIG? (I think you mentioned lyme in another post) 3) maybe he just needs more time? I remember diana (or someone) saying the IVIG might take several months to take effect, even a year. One comment about IVIG...the immunologist we are seeing did say IVIG is extremely anti-inflammatory. That may be why (although I don't know if it is the only reason) why it helps PANDAS kids. 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 Link to comment Share on other sites More sharing options...
pmoreno Posted April 23, 2009 Report Share Posted April 23, 2009 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. 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 Link to comment Share on other sites More sharing options...
Pezmom Posted April 23, 2009 Author Report Share Posted April 23, 2009 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. 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 Link to comment Share on other sites More sharing options...
Dedee Posted April 23, 2009 Report Share Posted April 23, 2009 Pat, Can you tell me more about the oregano oil? How are you giving it? If it has a bad taste, are you successful in hiding it in something to get it down? I have never heard of that before, and it sounds like a great option for keeping kids healthy. Dedee Link to comment Share on other sites More sharing options...
pmoreno Posted April 29, 2009 Report Share Posted April 29, 2009 Pat, Can you tell me more about the oregano oil? How are you giving it? If it has a bad taste, are you successful in hiding it in something to get it down? I have never heard of that before, and it sounds like a great option for keeping kids healthy. Dedee Sorry, I haven't had a chance to get on line lately, but the oregano has a very strong flavor. You only need to give about 3 drops 2 times a day and you can hide it in some kind of strong juice (like carrot juice maybe), but I usually give it in a small amount of it, then chase it with a big glass of something that tastes good. You can google it, but it definitely works as all three (antifungal, antibacterial and antiviral). I don't think you'd need to give it for long - I only gave it for 5 days. Then make sure you give a lot of broadspectrum probiotics to fill in the space of whatever pathogens died. I am starting to make my own young coconut kefir - google that and see what the health benefits are. You start out with just a tablespoon in the morning, then go up to about 1/4 cup in AM & PM. It doesn't taste too great, but you can hide it in smoothies. Pat Link to comment Share on other sites More sharing options...
Caryn Posted May 1, 2009 Report Share Posted May 1, 2009 Pat, We use Oreganol over here in capsule form. As long as they can swallow a small capsule (and they DON'T bite it) there is no bad taste involved. I do not give it daily (we are not a PANDAS family) but I do give it when the kids around my kids get sick or they have a hint of something coming on. It has worked beautifully this winter (combined with the Vit D supps which was another new thing I started). No one in our house got sick or needed antibiotics this year. Caryn --BTW, we tried the NOW brand and the Oreganol. My husband used it to fight off a sinus infection. We agreed that the Oreganol was better and well worth the extra money. I gave three doses a day with each meal when there was exposure at home or at school. The cure rate for my husband was longer than if he had gotten antibiotics but shorter than if he had suffered on without any treatment. Link to comment Share on other sites More sharing options...
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