Rachel

My ds was seen by a doctor in Texas last December. Finally got test results back and have a phone conference set up with the doctor this Saturday. The test results showed that my ds M pneumioiae IgG Abs was 953. Normal Range is 0-99. The funny thing is this same test has be done twice ( results were in range) after the titer showed up high 3 years ago. Does Mycoplasma only show it's head when there is an active infection in the body? I know this thing is hard to detect but I am in shock I guess. From reading I know it can move in and out of cells freely. If this has been in my ds body this long, what could I expect treatment wise? My son is on 250 Azthromycin and not seeing any improvement. Started it December 21, 2013. This test also showed the HHV 6 IgG Antibodies at a high range and I know that this indicates an active infection. My son's Anti-DNase B Strep Antibodies were at 390 which are high but I do not understand what this test is actually measuring. Does this indicate an active infection or past infection? Antistreptolysin O Ab was 15.1. Range is 0.0-200. To top it all off, my son ws diagnosied with strep 2 days ago. When this happen his vocal tic got worse and so did his tremors. I'm feeling just a little bit overwhelmed because I just want to keep him well. Big brother came down with strep 5 days before. How do you prevent the strep from spreading? My ds that has possibly PANS had already been on 250 Azthromycin since December 21st and now he is on Augmentin 2 times a day. I have been giving a probiotic before bedtime. How many hours should it be given after an antibiotic? How many days before you do a recheck to make sure strep is gone in both son's? Sorry to be asking so many questions. I will be getting copies of more new testing tomorrow. I am excited to know what may be causing the problems but very concerned about how I am going to keep my ds son well. Rachel

I have been looking at the Gluten Free diet. I would like to know what symptoms it seems to help. I would love to hear any, success stories. I read the one on Jessica on the other forum with Safe Plate Diet. If you did this diet, how long to it take to see any relief with symptoms. Symptoms such as headaches, scalp pain, vocal tics, tremors, fatigue and low energy levels. What were the benefits of going GF? My son has no food allergies and has been tested with tissue sensitive gluten test and it was negative. I'm just wondering if putting my son on this diet would be worth the trouble. Rachel

Thanks Joybop for your answer. The other doctors that I use with my son work this way. I can leave a message and they will get back in the next 24 hours. My problem is that I can't leave a simple message and get an answer back. I'm frustrated and don't feel like I will be able to get the care that my DS needs with this new doctor's office. Rachel

Have any of you been fortunate to find a Specialist that will communicate with you by email or a nurse line. The specialist I took my son to last December will do 30 minutes phone conferences for $175. I tried to ask a simple questions about a reaction to a medication and the staff said that I would need to set up a conference call. Is this how most specialist in the area of PANS/PANDAS and Lyme treat patients. I have insurance and they will not pay on conference calls like this. I have a cardiologist that works with us weekly by email and calls my house at least once a month. This doctor is willing to collabotate with other doctors since this condition is affecting DS blood pressure and heart rate. I guess the other question, I need to ask is Will your specialist collaborate with your main doctor? Hope I am not confusing you. I live in Oklahoma and our insurance will allow us to go see other specialist but treatment with IV has to stay within our state. Rachel

I don't feel so alone now. I was wondering if anyone else was having trouble getting answers from their specialist. Rachel

Really good article. I give my ds fish oil but it's a low dosage. What's the typical dosage given that will help with PANS/PANDAS? Rachel

I got back a Urinary Porphyrins test from the Laboratoire de Biologie Medicale in Paris France. The following things have been flaged. Uroporphyrins I & II 17 Reference value 10-16 Precoproporphyrin 14 Reference value 3-9 Coproporphyrins I & II 139 Reference value 70-130 Total Porphyrinuria 177 Reference range 87-163 From what research I have done, this test is used with Autism and PANDAS. My son does not have this diagnosis but is being seen by a specialist in this area. The precoproporphin indicates mercury levels but still don't understand what is related to the others. I will continue to research online. Trying to remain calm because I really have no ideas what this means. Any help would be appreciated? Rachel

Thanks for sharing your progress. Rachel

My son saw an immunologist that specializes in PANDAS/PANS. My son has elevated PANDAS antibodies on the Cunningham test. He has been sick for 3 years. He was tested for strep when his illness started but it was negative. PANS is a newer term but it can be caused by other virus and bacterial infections. I would also suggest that you get to someone that specializes in this area. I am new to this illness also but wanted to share this information about PANS. It is very simular to PANDAS, it just has a broader definition of what might cause it. Wishing you the best. Rachel

The rash appears after lunch time. On one arm the rash is gone now, but it's still on the other arm. I just assumed it might have something to do with the medication because it's the only thing different that he is taking at noon. I will call the doctor and tell him what I am seeing. If it was causing breathing problems he would have already been to the er. Thanks for your replys. Rachel

My son has been on 250 mg of Azitromycin since December 21,2013. He takes this medication at lunch time. This week he started having a red rash appear on both arms. It is red and warm to touch. It does not itch. Is this a good sign this medication is working? Or should I be concerned? Rachel

I checked my son's testing for lyme. It is all negative, even the testing for co-infections. However, this testing was done at a hopital lab in house. Not sure how accurate this testing is. When my son's health condition went downhill ( symptoms were stiff neck, slured speech, fatigue, severe headache, and hypersensitivity), this hospital admitted him. All testing came back negative except the tilt table test and a low IgA. I am going to request that this testing be ran again and sent to a different lab. If my son has lyme disease or a coinfection, will it still show up on a test? Or does the infection have to be active? Does it hid in the cells? It's been over three years since his illness started. Rachel

I am considering doing this test with my son. Can I still figure out what I need to know with just the raw information? I saw the thread with all the information about this test. I don't mind doing the research because I have lots time on hand. Just wondering if you can still figure out the test with just the raw data. Rachel

Thanks for bumping this up. I will go back and check on what labs ran these test. Rachel

Joybop, My son is not online for 6 hours straight. He has assignments that can be done offline also. As his learning coach, I have to put in the answers for those assignments for grades. So you are part of your son's educational success My son's physical therapy counts for his PE time. Rachel

Hi everyone, Thanks for the responses. My son has just recently been seen by Dr. Rao in Plano, Texas. This doctor diagnosied him with Unspecific Encephalities. He ran several test and we are waiting for results. He started my son on Azithromycin, B-12 shots and three other supplements. My son's vocal tics started after a sore throat back in August 2010. They did a rapid strep test and it was negative. Six months later, my son had walking pneoumia. Two months later a mycoplasam titer showed up out of range in blood work but he was never treated. We left this doctor and got copies of records and found this information 6 months later. My son just kept going down hill. In October 2010, my son was admitted to Childern's OU Medical Center for 10 days of testing. A tilt table test was done and he was diagnoised with Postural Orthostatic Tachycradia Syndrome ( POTS). He has low blood pressure and a high heart rate. So we are currently under the care of a cardiologist. However, our cardiologist realized after a year of not responding to POTS medications, that something was causeing this condition. He was able to get us to Dr. Cunningham for testing and to Dr. Rao in December. Our cardiologist is the advocate for our son. I will be checking out the doctors you have mentioned but I'm hoping we have some answers after some other testing comes in. The hardest part is waiting on test results. The scary part is how it's affected my son's blood pressure and heart rate. My son is on medication to keep his blood pressures up. Thank you so much for your responses. It's so nice to find parents that can relate to what we are going through. So glad I found this forum. Rachel

Thanks for bumping this post up. My son has never been diagnoised with OCD but has the antibodies according to the Cunningham Panel. My son saw Dr. Rao in Plano, Texas this last December. He was diagnosied with Unspecific Encephalities. I'm learning so much so quick and so glad I found this forum. Rachel

Joybop, The website is k12.com. I had to use that site to enroll my kid. You will need internet service because this is not included. Our school also provided a computer because my son was on an IEP. School does not cost us anything in Oklahoma. Any books for classes or supplies needed for Art class was sent to us. As the learning coach you log in your child's attendance daily and you have access to all your child's lessons. Your child attends classes online and is provided instruction by certified teachers. In Oklahoma, the kids must log in 30 hours of attendance anytime Monday - Sunday. So it allows a very flexible schedule if your child is having to do treatments in a hospital setting. As long as you have internet, your schooling is just a click away. In Oklahoma, there are several K-12 virtual schools. The school we were enrolled in was the one closest to our home district. We did have to get an emergency transfer but that was no problem. The school district understood and knew we had no choice due to my son's medical condition. Our school has outing for the kids monthly and they have many different contest. They even have online clubs the kids can join. Hopefully your state will offer something close to what we have. Wishing you the best.

Does your state have K-12 virtual school available? In Oklahoma it's a free online public school. This is my son's second year. He's in 7th grade and it's been wonderful. He is on an IEP. The staff has been wonderful to work with and they have accomodiated his educational needs. All the curriculm is provided and a parent needs to sign up as the learning coach. So glad your vist went well with NIH. Sounds like you learn quit a bit. Wish they would do a study on IVIG with the first treatment after a six month on set. I would really be interested in knowing those results.

I looked this term up. I had never heard of it before but it fits my son. There is treatment and my son has tried some of these medications. However, what he has been tried on has not worked. I will talk to our doctor and see if I can get him to try him on something else. The problem may be trying to find something that will not interfere with blood pressure medication. My son has low blood pressure and the medcation he is on is suppose to help keep it up. Thanks for sharing this information.

He has been tested for Lyme and it was negative. He has been diagnosed with Postural Orthostatic Tachycradia Syndrome (POTS), which is all we thought this was wrong to begin with but never got any better with medications. This syndrome can also be caused by a virus. We are working with a cardiologist and have visited an immunologist recently that does treat PANS/PANDAS. We are waiting on some more test results from his office.. Our cardiologist was able to get my son into a study with Dr. Cunningham. The first Cunningham Panel show all antibodies in the unlikly range, the second test showed highly likly range. My son has not been diagnosied with SC. Did the IVIG treatment help your son with any of his symptoms?

I am wondering if IVIG/Plasma exchange has been an affective treatment for a child with an onset of PANS/PANDAS that was not diagnosed within a year of onset. My ds son has had many symptoms developed since his illness . His illness started in 2010 and these PANDAS antibodies were found highly elvated in October 2013. Symptoms that have started with the illness include the following: headache, scalp pain, loss of muscle control, could not sit without help for several months, rolling back and forth, tremors in arms and legs, low blood pressure, high heart rate,long term memory problems, hoarse voice, rashes on face come and go. Currently my ds is wheelchair bound and I thankful for the strength he has to be able to transfer in and out of the chair. In the beginning of this illness, we had to rent a lift for him. If this is truly PAN/PANDAS, these antibodies can do a lot of damage to the nervous system. Has anyone experienced anything simular to this with their child? From reading many post, I understand that many of you are using natural supplements and special diets. I have already been using supplements and the vitamins that were recommended in some of the threads. I have not tried any diets yet and realize this may be the next step. However, my son has been tested by the gluten sensitive tissue test and it came back negative. My son also has a low IgA but is not defiencient. So I'm not sure if going gluten free would be of help. Would love to hear some of your opinons on a gf diet. My ds is 13 and puberty seems to be delayed in some areas. I am wondering if this is the reason for the hoarse voice. It comes and goes through out the day. Some days his voice is fine. Overall, I am frustrated and just want some relief for my son. However, I really would like to know if IVIG or Plasma exchange has helped a child that has been sick for a long time. Sorry for the long post. Rachel

I am wondering if IVIG/Plasma exchange has been an affective treatment for a child with an onset of PANS/PANDAS that was not diagnosed within a year of onset. My ds son has had many symptoms developed since his illness . His illness started in 2010 and these PANDAS antibodies were found highly elvated in October 2013. Symptoms that have started with the illness include the following: headache, scalp pain, loss of muscle control, could not sit without help for several months, rolling back and forth, tremors in arms and legs, low blood pressure, high heart rate,long term memory problems, hoarse voice, rashes on face come and go. Currently my ds is wheelchair bound and I thankful for the strength he has to be able to transfer in and out of the chair. In the beginning of this illness, we had to rent a lift for him. If this is truly PAN/PANDAS, these antibodies can do a lot of damage to the nervous system. Has anyone experienced anything simular to this with their child? From reading many post, I understand that many of you are using natural supplements and special diets. I have already been using supplements and the vitamins that were recommended in some of the threads. I have not tried any diets yet and realize this may be the next step. However, my son has been tested by the gluten sensitive tissue test and it came back negative. My son also has a low IgA but is not defiencient. So I'm not sure if going gluten free would be of help. Would love to hear some of your opinons on a gf diet. My ds is 13 and puberty seems to be delayed in some areas. I am wondering if this is the reason for the hoarse voice. It comes and goes through out the day. Some days his voice is fine. Overall, I am frustrated and just want some relief for my son. However, I really would like to know if IVIG or Plasma exchange has helped a child that has been sick for a long time. Sorry for the long post. Rachel

My son is 13 and has had the Cunningham test. It does take 6 weeks but it's worth the wait. I am very new to the PANS/PANDAS diagnosis. Hope your test results provide some answers. My son tested highly likely. Welcome to the forum.

Not sure what is considered to be a sensory condition? When my son got sick back in December 2010, the scalp pain started after the walking pneumonia. At first it was not too bad, he coud still comb his hair and wash it. Gradually it has gotten worse . This last year it seem to get worse after illnesses. I suspect that infections and virus have made this problem worse. It's so bad now that hair cuts and shampoos are really impossible. It's a symptom that never gets less in pain. Is there a specifc type of doctor that could help my son with this issue?