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mybabyo

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  1. My PANS 17yr DS has had diagnosed PANS for 2 years. With treatment, we were 90% better for an entire year. He then had an entire relapse when he got chlamydia pnuemonia in November. We have yet to find the right treatment to put him back in "remission". We have noticed that when he is having PANS tics, they seem to get worse when he is around family and other people. When he is alone they are much much better. Why would this be? What is the cause of this or the science behind it? He doesn't appear to be anxious when around us or other people so why would his tics get worse? I would love an explanation or a link that might explain it for me. Thanks so much!
  2. My son PANS Ds17 has extremely high levels of human trans growth fact. beta 1. Highest range for normal is around 2300 and his levels are 5100. I don't know what this is and any research online shows it could be a result of anything. Is there a relationship with immune deficiency, PANS, possible Lyme with this hormone. I'm just trying to figure out what this tells me? Our follow up appt. isn't for awhile with the doc.
  3. We also use Klaire but are using Vital-10 5 billion cfu's of Lactobicillus and Bifidobacterium
  4. I found this topic interesting because I'm new at all this and we were recently diagnosed.We also are on a probitotic which I thought would help heal their gut which would help with healing and symptoms so I'm curious why probiotics might cause tics? Not questioning it but wanting more info. Wondering if perhaps we should do a trial of no probiotics?
  5. So, back in November, Dr. Rao started treating my son for tics/ocd possibly caused by high virus titers cocsackie(1:1600), Parvovirus (6.6), CMV (6.0), HHV6 (7.0). He did confuse me a little when he said initially that these numbers were not necessarily high enough be be characterized as PANS. Is that true..were yours higher?? Yet the lab reports put them in the high category. He then did the Cunningham Panel and his levels came back DRD1(4000), DRD2L(couldn't get due to shortage at lab), LYSO(640), and CamK(139). He confused me further because at one visit he told me these number were suggestive of PANS probably caused by the above viruses, the next visit a week later I had my son and husband with me and I wanted Rao to repeat his findings, he told us that the Cunningham Panel numbers were not neccessarily suggestive of PANS but that he was going to go ahead and treat him for it and see what happens. What?? Can any of you shed some light on this, perhaps these numbers mean something to you that you can explain and help me understand because he has me confused. He went ahead an put my son on Acyclovir anti viral. We have been on for 2 months. We had new labs done last week and I had them fax me a copy. They did not test Coxsackie again for some reason but Parvo went down to 4.8, CMV went to 5.8 and HHV6 for some reason could not be completed at the lab. How fast can I expect numbers to go down on antivirals. My son's IGG went from 609 to 380 during this time. I know that measures his ability to fight infection but not real sure exactly what this means for his immune system? He also did a new test on him which was the Candida Albicans. He tested really high at 18.9. I am assuming these means a yeast problem but what does that have to to with PANS and his tic/ocd symptoms exactly? And last, we are waiting on more test to come in which are mitogens I think(tetanus toxoid AG response, pokeweed mitogen response, phytohemagglutinin PHA mitogen, and candida albicans Ag response. Can anyone tell me what these are and what they tell us? I am considering doing the MTHFR only because I have heard it mentioned here. What exactly do the mutations found tell me. I'm not sure I understand the test but hear once I know how to interpret it can be very helpful to recovery. My son is 30-40% better depending on the day. Initially he was about 80% better but some symptoms have come back. He is also on NAC and Tumeric for tic control. I'm not sure if the improvement is due to lower virus titers or the NAC/Tumeric. Sorry for all the questions, once I get educated I hope I can give back to this board and all of you as much as you are helping me
  6. Hi everyone, I have small updates which leads me to more questions?? You all have helped me so much. So, back in November, Dr. Rao started treating my son for tics/ocd possibly caused by high virus titers cocsackie(1:1600), Parvovirus (6.6), CMV (6.0), HHV6 (7.0). He did confuse me a little when he said initially that these numbers were not necessarily high enough be be characterized as PANS. Is that true..were yours higher?? Yet the lab reports put them in the high category. He then did the Cunningham Panel and his levels came back DRD1(4000), DRD2L(couldn't get due to shortage at lab), LYSO(640), and CamK(139). He confused me further because at one visit he told me these number were suggestive of PANS probably caused by the above viruses, the next visit a week later I had my son and husband with me and I wanted Rao to repeat his findings, he told us that the Cunningham Panel numbers were not neccessarily suggestive of PANS but that he was going to go ahead and treat him for it and see what happens. What?? Can any of you shed some light on this, perhaps these numbers mean something to you that you can explain and help me understand because he has me confused. He went ahead an put my son on Acyclovir anti viral. We have been on for 2 months. We had new labs done last week and I had them fax me a copy. They did not test Coxsackie again for some reason but Parvo went down to 4.8, CMV went to 5.8 and HHV6 for some reason could not be completed at the lab. How fast can I expect numbers to go down on antivirals. My son's IGG went from 609 to 380 during this time. I know that measures his ability to fight infection but not real sure exactly what this means for his immune system? He also did a new test on him which was the Candida Albicans. He tested really high at 18.9. I am assuming these means a yeast problem but what does that have to to with PANS and his tic/ocd system exactly? And last, we are waiting on more test to come in which are mitogens I think(tetanus toxoid AG response, pokeweed mitogen response, phytohemagglutinin PHA mitogen, and candida albicans Ag response. Can anyone tell me what these are and what they tell us? I am considering doing the MTHFR only because I have heard it mentioned here. What exactly do the mutations found tell me. I'm not sure I understand the test but hear once I know how to interpret it can be very helpful to recovery. My son is 30-40% better depending on the day. Initially he was about 80% better but some symptoms have come back. He is also on NAC and Tumeric for tic control. I'm not sure if the improvement is due to lower virus titers or the NAC/Tumeric. Sorry for all the questions, once I get educated I hope I can give back to this board and all of you as much as you are helping me
  7. So my son is about to be put on NAC. In looking at these posts that may not be an option for some is that correct? My son just got diagnosed with PANDAS. He has not had the MTHFR yet and I don't exactly understand what it is. Should I be asking his doctor for it?
  8. Any chance you guys could forward me the same info. He just diagnosed my son with PANS/PANDAS and we have an appt. on Thursday to explain it all to my son. I have already met with him. My son is really struggling right now with his tics. They are worse than ever. He says it is because of stress. He is a very busy 16 year old with AP classes, marching band, Boy Scouts, tennis, and a few other things. I know he is stressed. We are really hoping Dr. Rao can help us. I am so afraid of getting my son's hopes up and this treatment doesn't work. We waited months to see Dr. Rao. I very curious about how others have done there.
  9. Thanks everyone for the valuable information. We have so much to learn. Kind of interesting that his Strep is turning up negative and he had his first bout with Strep every the year all of his tics started. He also had 2 more strep cases the following year. Tics have progressively worsened the last two years. I will ask my doctor more about this. He just seems to thing we need to focus on viral infections. He is negative for Lyme also. His OCD started at age 6 so I suppose it could all be virus related. Mayzoo, I saw that you are doing herbal viral treatment. Did you ever use a prescription anti-viral? I am confused as to what the point of the antivirals are since everything I'm reading says the virus cannot be cured with the anti-viral. Can it actually bring the numbers down and decrease symptoms then even? Eamon, you mentioned that your daughter would not do ERP. I am not sure what that is? All of these terms are new to me I have two other questions if you all don't mind...we did do the Cunningham Test with results of 139 CaM Kinase, 640 Lyso(titer), 1000 Tibulin, 4000 Dopamine D1, and D2 we don't have back yet. Doc said that with these results and the high Igm numbers on the viruses is what is leading him to suggest PANDA's. How reliable is the Cunningham test? After reading on these viruses, it scares me...they all say that really awful stuff can come from them such as encephalitis, schizophrenia, etc. Maybe I should stop reading and just come here.
  10. After months of doctors and searching, our new immunologist Dr. Rao of Plano said my son's labwork is suggesting PANDAS likely caused by three viruses still in his body that also are showing up on labwork. They are Parvo, HHV6 and CMV. What viruses are these in understandable terms? He did mention HHV6 was the most common causing PANDAS virus which I thought I had read the most common cause of PANDAS is Strep which he test negative for. He is recommending an anti viral to treat the cause and also said we need allergy treatment but he did not elaborate on what that would be. He is recommending Tumeric and NAC for tic/Ocd symptoms. He also wants to run some urine tests to test neurotransmitters to rule out that his tic/ocd condition isn't in part due to issues in the brain. First off, does anyone's case sound like this and if so was treatment successful for you? Secondly, I question how much of this is really PANDAS because my son's tics worsen in social setting and under stress. Could it still be PANDA's and symptoms worsen during these times or is that a sign that the symptoms are being caused from something else. And last, I can't get my son to cooperate with treatment of any kind. He is 16 and he thinks he is making his body do these things and that I'm trying to change him. They don't bother him so he says and he doesn't want us interferring. He will not stop eating the foods that he is showing allergies to and he will not even entertain the thought nor does he believe any of what Dr. Rao is saying and recommending. I have spent thousands of dollars to get to this point and my son will not let me get him treated. I'm frustrated, and deeply hurt and depressed about this so much I feel I need therapy myself. I have two years to help him before he leaves my house. Symptoms did not appear until he was 13.5 and it has taken us this long to get some answers. Can anyone please comment on any of my questions above. I can't tell you what it would mean to me.
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