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  1. Hello, I'm looking to hear from some patients of Dr. N. I already talked with one user (thanks) but my mom wants me to talk to some more people. My psychiatrist is referring me but not sure if I'll be accepted or not. I wanted to know if his treatment is individualized per case by case basis? I ask b/c PANDAS treatment can actually conflict with Myalgic encephalomyelitis (M.E.) treatment. I.E. I know several M.E./CFS patients that were put on steroids and have been bedridden ever since (not good to suppress our immune systems as we have tons and tons of chronic infections and a very
  2. wondered if anyone has a kid with Sydenham's chorea (SC) diagnosis?? my dd got her SC diagnosis confirmed by Dr. L last week. So its PANDAS along with subset of SC. We initially focused on the the Lyme before we got the PANDAS diagnosis. Not much effect on her symptoms ( cognitive decline and hearing sensitivity). We did the IVIG and saw real improvement - that was 3 months ago. not much since. We have no abx to deal with strep which is the next step wanted to see if any folks have dealt with SC and what was most useful treatment for them? I'm not sure if we have killed the lyme but w
  3. Have you seen this article? https://home.liebertpub.com/news/revised-treatment-guidelines-released-for-pediatric-acute-onset-neuropsychiatric-syndrome-pans-pandas/2223
  4. I should start by saying that is an amazing site. I always feel that I am alone on my anti-pharmaceutical island. My 6 year old was recently diagnosed with Tourettes. I feel like I was left dangling by the pediatrician without any directions on how to proceed. I have an appointment with our nurse practitioner as I want to do blood work to see if there any nutritional deficiencies. Without guidance from a doctor (we dont have a doctor as I didnt vaccinate my children), I need help. What type of nutritional deficiencies should I make sure to test for? Are there any other
  5. Hi guys, I'm very sorry to keep going on. Yes, there is a positive response to the antibiotics, but my step father is very cynical and demeaning and my mum is rather reluctant to fund treatment in the states, grasping at other less likely and unhelpful explanations. Psychological therapy hasn't helped at all through the years, my cognition is in dire straits which has impacted education and occupational opportunity and left me in a state of pure social isolation for the last 8 years! I'm very uncertain of my future now. I have been marginalised and ostracised by my peers, and c
  6. Hello, I am very new to the group, my 15 yr. old daughter has been newly diagnosed with PANS after doing the Cunningham Panel along with clinical symptoms. I will share her story another time but I need advice from others; She has been experiencing symptoms for nearly 3 years. I recently found a neurologist that took her symptoms serioiusly and after doing the cunningham panel she immediately started her on Azithromycin 500mg. 1 time per day. A few hours before she started the antibiotic she started to not feel well after starting the antibiotic now 10 days she has progressively gotten wor
  7. Hello friends, This is going to be an unusual thread. I am new to this whole disorder. My child is 7 and I will get my child's lab results on Monday. We are testing for PANDAS and other potential viruses. My question is this... has anyone ever used the Hippocrates Institute in Florida to treat this illness? I have been into the natural medicine/ alternative therapies world for my own autoimmune illness since 2009 and I am very familiar with this retreat/resort, etc. (There are hundreds of youtube videos if you want to research it). I never would have spent the money for me, but sin
  8. I found a couple of articles that might be of some interest to someone. Most of you know my son was dignosied with Postural Orthostatic Tachycradia Syndrome and his symptoms keep getting more severe after infections and viruses. Currently my son is doing plasmapharisis twice a week on an out patient basis. The treatment is not causing him to be worse or increasing any of his symptoms. I am beginning to see small changes. He is gaining some strength and he is able to do some physical therapy exercises. His tremors are less. Our doctor started him on some predisone this last week. His blood pres
  9. I'm learning about this after reading about a success story on one of my many Facebook PANDAS groups, and went searching for information. There are others that have been helped by it, although I'm still trying to understand it. My ND's office has a chiropractor who uses it for Lyme patients, but he is not that familiar with PANS. I know it reduces inflammation and increases blood flow and helps facilitate healing, but does it kill bacteria? I don't know whether or not to try it. Has anyone had any experience with this?
  10. I have went back and looked at many post on Lyme disease. So maybe I missed something and you guys can help me out. I went back and looked at all of my son's test results since he was sick in December 2010. He has been checked several times for Lyme and coinfections at different labs. After his main illness began, he was tested at 2 months, 6 months, and 9 months later for lyme and coinfections. All testing was negative and was done by different labs. I know that Lyme testing is not the most accurate from any lab even from Ignex. Is there a Lab that runs an accurate test to check for late stag
  11. I have read some articles about this syndrome but I am not getting a clear picture of what the symptoms actually are? What symptoms does you child have from this syndrome? My son has not been checked for this but the more I read, I am wondering if this could be part of his problem. Is there treatment for this?
  12. My doctor wants us to try Oral IG. It is the IVIG used but not with needles, We are told to give him a childs does of Pepsid to stop stomach acid and the oral amount is small & given every other day for many months. It is expensive $600. a month and I am fully aware of that. Background: My son is 3.5yrs old, and is in & out of being with us.He has some OCD, it used to be EXTREME. He talks some but not conversationally. He did 20 days of Cefdinir 2 different times. On both occasions he did speak conversationally. And permanently lost some of his worst OCD & separation anxiety s
  13. Thought I would share what I found. I did not know that this part of the study had been released. After reading the research, I understand more about my son's condition. My son will be having another IVIG treatment this coming weekend. He was also given another shot of high dosage penicillin this past week. I am also starting him on a gluten free diet after the next IVIG treatment. I hoping this will give his immune system an extra boost. My ds is ready to comitt to the diet and I have gathered the supplies and recipes. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3779221/
  14. I'm just wondering if anyone else is using Taurine and has seen improvements in their childs symptoms. I have been reading and seeing some Doctor's protocals online for treatment of PANS/PANDAS. Taurine is listed and being used as a supplement. Taurine supposedly deregulates CaM Kinese and will help raise GABA levels. I started using a very low dosage with my son this last week. Is anyone else using Taurine and seeing good results?
  15. This is the second time this year that my son has had a strep infection while on an antibiotic. Is this normal? Since this year, he has also started testing positive on a rapid strep test. In the past, rapid streps always showed up negative. The first time this happened, he was on arzithromycin and this last time, he was on Bixan. He is on these antioboitics because of Mycoplasma P. Is my son going to have to go on a stronger antibiotic to get rid of the Mycoplasma P and to keep from getting a strep infection. My son does not go out in the public, he's home bound. So why is he catching strep.
  16. I finally got my son's 23 and me test results back. First of all, thanks LLM for your post for 23 and ME. This has helped so much. The genes that showed up really do influence the symptoms that my son is having. I will be sharing these results with the cardiologist because he will be open to this. He will be more than willing to do testing to check for sulfite and ammonia levels in the body. My son did not have any SHMT or ACAT, However, he did have 4 hetrozygous CBS genes show up and 4 Hetrozygous MTHFR genes. As for Homzygous genes, this showed up in MAO AR297R, MTRR A66G, NOS 3, CETP,M
  17. I have read through some old post and see comments that this is helping. How is Fish oil helping your son or daughter? What dosage is being used. Feel free to pm. My son takes fish oil but not at a high dosage. I tried increasing olive oil levels this last week in his diet and his pain levels and sensitivity levels went way up. So I have backed off. I have found some articles that indicate Fish oil is good for many things and will share what I find. Is there any research on how fish oil affects PANDAS/PANS. I am assuming it affects the brain antibodies, Maybe? I feel like I missed some good
  18. I have been reading Buhner's Book on Healing Lyme Disease Coinfections. The section on Mycoplasma is great. I never knew realized what damage this horrible live bacteria could do to the body. So this mama is ready to go to war. My son has had a Genova testing done to analyze Omega 3,9,6 and saturated Fatty acids. My son is deficient in Omega 9's, Oleic, a-Linolenic , Arachidonic, and just barly in the range for Omega 6's. His AA/EPA is deficient also. I do give him fish oil but I know that these Omegas are not supposed to be mixed or they will cancel out each other. So do I need to
  19. My ds doctor's appointment went very well this last Tuesday. Our cardiologist is going to start a more aggressive treatment plan. Testing from the Pandas study has indicated some heart antibodies are present. However, my son has not been diagnosied with PANS/PANDAS because of how his illness progressed. He has been put into another study at OU for POTS patients. This study is also looking at specific heart antibodies and receptors. The cardiologist has given my son another diagnosis and his POTS is the secondary diagnosis. This new diagnosis is a tongue twister it starts out as autoimmune anti
  20. I have been reading some old post on inflammation. I would like to know more about fish oil, bentoninte clay, oil of orgeno capsules, epicor, and mesosilver. How does is help your child with inflammation and pain. How much do you give if you feel comfortable giving out this information. Or you can pm me. My son has been living with daily pain ( headache, scalp, nerve pain). I do give him fish oil but not 3,6 ,or 9. In cooking, I use butter, olive oil, and coconut oil. My son has had the esr and cpr test and they are always in the normal range. However, recent testing indicates high Kynurenic a
  21. I really did not understand what this was until I made the connect with another post. When my son became sick back in December 2010, I kept taking him back to the doctor because of a severe headache. The next symptom was the scalp pain and then his symptoms kept getting worse after each illness. On a recent test, the Kynurenic Acid showed up high and out of range 22.1 normal range (10.6-19.7) My son's worse symptoms are his headache and scalp pain. So I'm having a hard time of understanding why an immunologist doctor will not do some more testing in this area or is this a neurologist field. Th
  22. I have been researching Mycoplasma and I understand there are different forms of mycoplasma. Can mycoplasma P come from a tick bite? The first time myco P ever showed up in my son was after he had walking pneumonia. The antibodies also showed up high in his last testing. So I am assuming he has this form of Myco P from the pneumonia virus side. I don't want to confuse myself but would really like someone to clear up my confusion. Does this make sense? I was also wondering if all forms of mycoplasma were treated with the same types of medications such as Bixan and Doxycyline. I am begin
  23. I did some research on this yesterday but you guys are a pro on this. My son started taking Bixan on February 14th. This last Monday, he started complained that his back was really hurting all over. At first, I thought maybe he was getting dehydrated but he is drinking at least 48 ounces of water, 32 ounces of gatoraide, plus his milk consumption during the day time hours. He has to drink fluids to help keep his blood pressures up and his blood pressure medications must be taken with water. He still has a rash that will come and go on his arms. It does not itch or burn but he still gets h
  24. 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 lo
  25. 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
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