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Everything posted by Rachel

  1. It really sounds like you may have something autoimmune going on. My son tried many immune boosting supplements and nothing helped. His neurological symptoms just kept getting worse after infections and viruses. He even did green smoothies twice a day for several months and saw no benefits. Have you done the Cunningham Panel test?
  2. Before my son was diagnosed, he had tried many of these psych meds. The meds made him worse. IVIG also made symptoms worse but plasma exchange was his lifesaver. When brain inflammation is present, psych meds should not even be prescribed until the inflammation is under control. What's so sad is that many doctors don't believe that molecular mimicry is real and can cause these types of illnesses. IVIG and plasma exchange are expensive treatments and should not be ignored when testing indicates the neural receptors are out of range such as measured in the Cunningham Panel. I think it's shameful that our children cannot get the treatment that they need. My son was unable to stand or walk, suffered with severe scalp pain, headache, hoarse voice, brain fog, hypersensitive to touch, and was also diagnosed with Postural Orthostatic Tachycardia Syndrome. Psych meds and high dosages of antibiotics did nothing for his condition. My son dealt with these symptoms for 3 years before his doctor finally was able to get insurance to approve IVIG and finally able go on to plasma exchange.
  3. The medical community has a hard time believing Molecular Mimicry. However, when you have a child that is not able to stand, walk, has all over body pain, nonstop headache, scalp pain, hoarse voice, vocal tics and a doctor from MAYO suspects postinfectious encephalitis then it's time to figure out what the illness really is. The Cunningham Panel can determine if the antibodies are present but only needs to be done when a child is in a flare in (my personal opinion). My son was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) in October 2011. POTS can be caused by a virus. He had mycoplasma walking pneumonia in January 2011. Two years later testing revealed high Igg levels of mycoplasma, HHV6, Parvovirus, and a 500 strep DNASE level. My son suffered with his symptoms for several years and they did not appear overnight. The testing (Cunningham Panel) is available to prove that the antibodies do attach themselves to neural receptors. Thank goodness we have a few doctors that recognize what this illness is but it needs to be called neural receptors autoimmune encephalitis.
  4. Have you seen this article? https://home.liebertpub.com/news/revised-treatment-guidelines-released-for-pediatric-acute-onset-neuropsychiatric-syndrome-pans-pandas/2223
  5. It's been awhile since I have been on to given an update on my son. He is doing well and finished a year of plasma exchange treatments in July 2015. His energy levels are much better but he is still on supplements and medications. He has not had any strep infections and still takes penicillin VK 250 mg daily. In addition to his supplements and medications, he also takes the 90 billion Ultimate Flora probiotic for men. My son is 17. He was 13 years old when the Cunningham Panel test was run and antibodies were found in December 2013. He started treatment with high dose antibiotics, then IVIG, and then went on to Plasma Exchange. My son has been on antibiotics since December 2013. What I am wondering about is how long is too long to stay on antibiotics? I am afraid he could have a relapse if taken off. His doctor wants to leave him on the antibiotics because of a possible relapse. Are any of you dealing with this situation? Would love to know your opinions.
  6. My son was treated with plasma exchange and his doctor did not recommend a retest with the Cunningham Panel. My son finished his treatment in July 2015 and has had no strep infections since. However, his doctor is checking for strep antibodies through ASO testing.
  7. Have you joined any of the Lyme facebook forums? Lyme is hard to get rid of and to treat. Have you been checked for coinfections? Low dose naltrexone is also being used by Lyme patients It helps with pain issues and helps regulate the immune system. Not sure how much it would help with some of your issues but it might be worth a trial. My best advice is to go see an LLMD and get back on antibiotics or try a herbal protocol.
  8. Have you tried magnesium? It makes a huge difference for my son. https://www.psychologytoday.com/blog/evolutionary-psychiatry/201106/magnesium-and-the-brain-the-original-chill-pill Here is a study on nutrients and children's moods. This article might be helpful also. http://vipbrainfitness.com/wp-content/uploads/Kaplan-Treatment-of-mood-liability-and-explosive-rage-with-minerals-and-vitamins.pdf
  9. Do You know the levels of your IgA? My son's levels were low but not considered deficient (41 and normal lab ranges 50-90). Research states that people may have a hard time tolerating IVIG with low levels of IgA. It has something to do with the body rejecting the doner antibodies. I tried to get my son's doctor to order an IVIG that did not contain IgA but hospital only used one brand and would not make exceptions. My son only had 3 IVIG treatments but after each treatment, his symptoms got worse. If you do have an active Lyme infection, your body will react to IVIG and plasma exchange. My son tested negative for Lyme and coinfections but I was still uneasy after I saw how his body reacted after IVIG. Testing for Lyme or coinfections is not always reliable. However, IgneX is one of the more accurate labs. If you really suspect Lyme or coinfections, you need to be checked before doing Plasma Exchange. Plasma exchange takes the good and bad antibodies out. It takes out what your immune system needs to fight off an infection. My son's body was suppressed with plasma exchange. If he had Lyme or any type of coinfection, he might not have made it. As far as I know plasma exchange is not used to treat Lyme or coinfections but it is a secondary treatment for Basal Ganglia Antibodies. Oh my! Just read your above post. Please don't attempt PEX. Get to an LLMD quickly as possible.
  10. From what I understand about these antibodies, they will keep reproducing as long as they are in the body. Once the body accepts them, the body no longer fights them off. So when you get any new infections, you add fuel to the fire. Once the antibodies take over, it gets harder for the body to fight off any infections. If antibiotics will not fight off the infection, then you are in another losing battle. My son tried 6 months of antibiotics before doing IVIG and his symptoms kept getting worse. Once you get the antibodies out of your system, your immune system should reset itself and antibiotics should fight off infections.
  11. Have you tried Low Dose Naltrexone? It is the only medication that worked for my son. My son had severe scalp pain. So bad, he would cry when washing hair in the shower, scalp stimulation would cause severe vocal tics, could not tolerate a haircut, had hypersensitive skin issues so bad he could not tolerate a bed sheet and daily persistent headache with pain level at 8. After taking 3mg of LDN for 8 weeks, all pain, and inflammation issues are gone. He is also homozygous for the same 2 gene SNPs that you mentioned in your post.
  12. I don't know the answer about the number of treatments. It will depend on how quickly your body responds and if your body will stop making the antibodies. My son's body could not fight off any infections, so his body kept making them until the treatment finally wiped them out. His immune system was suppressed with this treatment. Have you been checked for other autoimmune antibodies? My son's doctor always suspected he had others like AAG which is very hard to diagnose in children. Gillian Barra was always a concerned because all my son's neurological symptoms got worse after having a double round of flu. My son's case was complicated.
  13. http://vipbrainfitness.com/wp-content/uploads/Kaplan-Treatment-of-mood-liability-and-explosive-rage-with-minerals-and-vitamins.pdf I know this study was done in 2002 but I use several of the supplements mentioned in this study with my son. Thought the article might be helpful to someone else.
  14. IVIG made my son's symptoms worse also. After the 3rd treatment, his doctor realized that he needed Plasma Exchange. I know to get it approved with insurance, he used medical research articles. My son was 14 when he started treatment. The plan was to do 3 weeks of 3 a week treatments and then go down to 2 treatments 2 a week for 6 weeks, and then one treatment a week for 6 weeks and then 1 treatment every other week for 6 weeks. However,after my son dropped down to 2 a week treatments, about 2 weeks later his worse symptoms returned and he had to go back up to 3 treatments a week for awhile. I suspect the amount of treatment needed depends on the number of antibodies in the body and the body systems that are being affected. Before starting treatment, he had the surgery for a port. Treatment is much easier with a port. If you go this route< i would suggest that after you finish the treatment, you start on Low Dose Naltrexone. It helps regulate the immune system. My son started on it after the last treatment he had and he has not been sick or had any symptoms return.
  15. Interesting article. I wondered if those kids ever got treated and what the treatment was. However, it sounds like some of the kids have not made a full recovery and that's sad for them and their parents.
  16. http://www.balancingbrainchemistry.co.uk/peter-smith/35/MTHFR-Gene-Mutation-and-Treatment-Resistant-Depression.html I don't know if this article would help or not but brain inflammation is mentioned. Do you take L-Methylfolate? If not you might ask you doctor about this supplement. My son did the 23 and me testing a few years back. When pain becomes overwhelming depression can creep in and you don't want that to happen. I don't know if IVIG would deplete any of your body's nutrients but PEX was hard on my son and I had to use additional supplements to help support his body when he was going through treatment. Have you been checked for B, iron, D, and magnesium levels? Just wondering if your treatment has depleted some things in our body and maybe this is why you are feeling so bad. I would be happy to share a list of supplements if you think it would be helpful.
  17. My son did not tolerate IVIG because symptoms got worse. He was also pre-treated before having IVIG. However, my son had a low IgA and people with low IgA's have a hard time tolerating IVIG. There are different brands that contain little or none of the IgA. The hospital that my son was treated at only used one brand and nothing differently could be ordered. His doctor could not order anything different because of the rules and regulations of a teaching hospital. My son had to do plasma exchange because his body could not tolerate IVIG. Hope your doctor is able to get it figured out for you soon.
  18. The only way to get this figured out is to see if your PANDAS son has an active strep infection. If he does not, then his body is most likely reacting to the strep that your younger son is trying to get rid of. The body of a PANDAS patient is very sensitive when it gets exposed to this stuff. Since Tics have not stopped, you might ask your doctor about doing a different antibiotic. You might also need to try a different probiotic. Sorry, you are having to deal with this. Sometimes it's really hard to get the tic cycle to stop. Whenever my son was exposed to strep, vocal tics were the symptom that let us know something was going on in the body. We just took him to the doctor and did the rapid and culture strep test. The rapid test is not always accurate but went ahead and started antibiotics if positive. If culture was negative, we stopped the antibiotics and went back to the doctor's office to do more blood work if vocal tics continue. Other infections like,sinus and ear infections caused problems for our son.
  19. That's just my personal opinion about the Cunningham test because of what happened in my son's situation. My son is also on 250 VK penicillin daily. Not sure if a prednisone burst would interfere with those new results either. My son could not tolerate high doses or low doses of prednisone. It made his vocal tics worse. But if your son got a major infection and symptoms went through the roof, that's when I would recommend another Cunningham Panel especially if antibiotics are not helping.
  20. My son has been using LDN since July 2015 for chronic pain issues. He had severe scalp pain, a daily headache, and hypersensitive skin issues. After being on 3 mg of LDN for 8 weeks, his pain issues are gone. He has been pain free for over a year. I also take LDN for some chronic pain issues that are caused by autoimmune illnesses. My pain issues resolved in about a month. I have been on this medication since last October. Neither I nor my son has been sick with colds, flu or other infections. It works with your immune system. Don't think either one of us will be getting rid of LDN any time soon.
  21. My son does have lyme or cvid but did have high levels of basal ganglia antibodies. He tried IVIG for a few months but it did not help. We were not seeing any improvement.He started plasma exchange and did it 3 times a week for 3 weeks and saw major improvement. His doctor dropped him down to 2 treaments a week and after 3 weeks all major symptoms came back. We have no idea how long the antibodies had been in his system but his symptoms were quite severe and caused Postural OrthostaticTachycradia Syndrome symptoms to become much worse. His blood pressures were extremely low 61/43 with high dosages of Blood pressure medication to keep them up. Since all the symptoms came back in full force, my son had to do plasma exchange 3 times a week 3 more months and then went down to 2 treatments a week for 4 months, and then to 1 treatment a week for 2 months and then 1 treatment every 2 weeks . He had a port and his treatment plan for PEX lasted a year. The treatment was worth it. Improvements came slowly and started seeing major improvements after 4 months.
  22. Maybe this article would be helpful. OCD is hard to deal with. http://www.balancingbrainchemistry.co.uk/peter-smith/35/MTHFR-Gene-Mutation-and-Treatment-Resistant-Depression.html
  23. My son lived with a constant headache for several years and tried many medications. BTW Neurotin, made his symptoms worse. My son also had severe scalp which was most likely making his headache worse. My son has also had IVIG and Plasma Exchange. Be sure to get the premeds before IVIG if you will be trying this treatment. My son did not do well with IVIG it made his headache worse. The only thing that helped lower my son's headache for an 8 to 6 pain level was ER Namenda 14 g twice a day.However, his headache did not go away until he was put on 3mg of Low Dose Naltrexone. It took 8 weeks for it to work but it was sure worth the wait. His headache is gone and he no longer has scalp pain or hypersensitive skin issues. Low Dose Naltrexone works with the immune system and is used to treat Chronic Regional Pain Syndrome.
  24. I agree with sf above. Repeat that testing first. The first time my son had the Cunningham test, everything was in a normal range. The second time my son had the test, he had a double ear infection. Strep plays a part in ear infections. His test showed Cam Kinase II at 234 and Dopamine 1 receptors at 4000, D2 8,000,Lysogangliosides 320, and Tubulin 1000. On the first test my son had the titer levels were exactly 1/2 of the levels except for his Cam Kinase which was at 119. Just my personal opinion about the Cunningham test but an infection will cause the antibodies to rise. I would only have my son do this test again during an infection and when his symptoms are through the roof. For us, having a baseline test was good because my son's cardiologist was able to prove that the antibodies were making his POTS symptoms worse.
  25. Just wanted to pop in and give everyone an update on my son. He was diagnosed with Postural Orthostatic Tachycardia Syndrome in October 2011. He was tested for Lyme and Co-Infections but never got a positive test on any bands. He tested positive for Basal Ganglia Antibodies in November 2013 but was never diagnosed with PANS/PANDAS because he did not meet the NIH criteria. However, my son did get treated for these antibodies by his cardiologist because they were making his POTS symptoms worse. He was treated first with antibiotics, then a few months of IVIG, and then had to go on a do Plasma Exchange. His Plasma Exchange treatments lasted for a year. He had his last treatment in July 2015. In June 2015 before treatment stopped totally, my son's tremors from waist down disappeared. He could finally ride a recumbent stationary bike and started doing floor exercises to build up core muscles that he had lost from not being able to exercise. The Basal Ganglia Antibodies interfere with cell signaling which in return will interfere with any signaling in the brain. In July 2015, he still had his daily headache and severe scalp pain. His doctor prescribed extended release Namenda in April 2015 and it dropped the headache down to 6 out of 10 instead of an 8. His doctor also prescribed Low dose Naltrexone 3mg the end of July 2015. This medication is used to treat CRPS, chronic pain and other autoimmune related illnesses. Eight weeks later, my son's headache, severe scalp pain, and hypersensitive skin pain issues are gone. My son has been pain-free since October 2015. In November 2015, my son was finally able to stand up and take his first steps with a walker. A week later, he tossed the walker aside. My son saw his doctor later in November and he sent in the orders for physical therapy. His doctor also allowed him to start going to one church service a week to start exposing his immune system and to do short errands in uncrowded stores. So we started making short runs to the Post office, Braums for milk and ice cream, It tired him out at first, but he does enjoy getting out. Physical therapy was started in January 2016 and in March my son was doing pool therapy for 60 minutes. His pt taught him to swim and he now goes to an indoor pool to swim or do pool therapy exercises. He currently exercises 3 times a week, goes to all three church services, runs errands, and continues to do online school at home. His core muscles are still weak and he cannot sit up comfortably for more than an hour. He is able to walk for about 15 minutes before back pain sets in. He is being reevaluated for this soon. My son's POTS symptoms are more manageable. His blood pressures stay up, brain fog is gone, and hoarse voice is gone. Vocal tics are hardly every heard. My son is still on several medications but overall, he is on his road to recovery.
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