Rachel

Here's a helpful article on magnesium. http://www.psychiatryadvisor.com/magnesium-an-essential-supplement-for-psychiatric-patients/article/362253/

The first time my son did this test it showed not likely and he was having his normal everyday symptoms. The second time my son did this test, he had a double ear infection and all his symptoms went through the roof and the test results showed Highly Likely. When I decide to retest, it will be when my son has an infection because this is when the body will make more of those bad antibodies. I am not sure what this test proves except that the antibodies are present when my son is sick with an infection.

My son takes 800mg of magnesium in divided dosages throughout the day. Before my son goes to bed, every night he soaks his feet in 2 cups of Epsom salt and 1/2 tablespoon of Himalayan pink salt for 30minutes. This soak can also be done in the bath tub. He also takes 300 mg of magnesium, GABA, Probiotic, B6, and vitamin C before I turn the lights off in his bedroom at 10:30pm. He sleeps through the night with this combination. He takes all medications before 9:00 pm. He goes to bed at 10:30 and wakes up at around 9:00am. It took awhile to find the right combination for him but it he wakes up, he is able to fall back to sleep. Some people are afraid to take GABA. However, here is an article that explains why GABA works for some people and why it does not work for others. http://www.balancingbrainchemistry.co.uk/33/GABA-Deficient-Anxiety.html

Hi Kari These are my son's results. Thought you might like to compare. D1 4000 D2 8000 Lysogandlisode 320 Tubulin 1000 CaM Kinese II 234 Have you checked your son's strep titers lately? After this test was done, a doctor did the the Anti-DNase test B strep antibodies test and it was out of range. My son was having strep infections without showing up positive. Could Rhuematic fever or Sydenham's chorea be part of your son's condition?

Thanks kim for the article. I have emailed it and the other one to our doctor. My son connection to his illness is strep and mycoplasma p bacteria. He was having strep infections but testing was not identifying them. I found this out last year when he had the strep test that identified past infections. The major illness that sent him down walking pnenoumia and the mycoplasma titer showed up high. It's been a real mess because he had this happen again in 2013 and no one realized it had happened again until the the antibodies test showed up high again. If you find any more articles keep them coming. Again, thanks for the information.

Thanks for sending this Kim. High Cam Kinese can also cause allodynia (severe scalp pain). I saw a study on it this afternoon. High antioxident levels can help reverese this. I will show this article to our doctor. I never realized how much damage Cam Kinese could do.

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 pressures have also improved. Our doctor has told us this could still be a very long haul for full recovery. Research does seem to be catching up to us. My son's last testing numbers on Cam Kinese was 243. The normal range for his age is 95 or below. http://circres.ahajournals.org/content/110/12/1661.full http://www.bioline.org.br/request?pe14052

My son has had 3 LD IVIG treatments. He has been sick for at least 4 years. He has a Low IgA but not deficient. About 24 hours after the treatment he would run a low grade fever of 100 and break out in a rash. He was treated with tylnol, moltrin, and bendyrl. All this went away in less than 8 hours after it happened. It was a delayed reaction. The first time it happened it did concern me and his doctor. We saw no improvements with the IVIG and my son is now doing plasma exchange treatments.

Btw. Is there a possibility that something else could be setting off the tic? What seems to set my sons vocal tics off are cleaners, rubbing his head, and viruses. He had a really bad one this last week. He did not run a fever but his white blood count was at 20. It caused a little havic before having a tunneled central line put in.

Thanks for sharing your story. This truely gives me hope for my son.

Hi Cara, If my memory is working right, I believe if you raise serotinon levels you can lower the dopamine levels. There are several foods that are high in Serotinon. Turkey and dark chocolate will help but I can't remember the rest of the list. Check online for the list. There are some specific amino acids that also help raise up serotinon levels. I think they are GABA, L-Taurine, and L-thinaine. I'm not sure but check on P5P, this is the active form of B6.

Any way you could split the dosage in half? My son takes Symbiotics Colostrum but it contains milk. We saw some benefits from it within a month.

It might be a cleaner that being used in the gym that might be triggering the tics. With exercise, you will also be raising hormone and other brain transmitter levels. Until your son's body adapts to this rise and flow levels it may stimualte his tics. You have introduced a new stimulation to the body and it may just take some time for it to adjust When my son gets tired and over heated his vocal tics can start. My son has had the test for brain neurotransmitters and his dopanine levels run high. High dopamine levels can make tics worse.

My son does the K-12 online school and does have an IEP. It's has been a really good experience for us. I meet online with his teachers and tell them what modifications are needed. When my son started IVIG treatments in April last year, they slowed down the pace of his school work. They sent a teacher out to give his end of the year testing with modifictions. The best thing you can do is communicate with the lead teacher and let them know what is going on. K-12 online public school has been a wonderful experience.

He is having his 2nd treatment this morning. They pretreated with Zofran but his headache pain level has went up from an 8 to 10. He is supposed to have another treatment tomorrow morning. I am hoping for the best and excited that he is able to get the treatment.

Our doctor came in this morning and asked my son if he could try another treatment today. He said he would try it. They gave him Zofram yesterday and it really helped with the nausa. They will give this to him before they start treatment today. Oivay Thanks for responding. So all your daughter needed was 6 treatments. That's great news. Our doctor is not sure how many my son will need. The central line was put in for this reason. We really do not know how long these antineuroal antibodies have been in my son's body and what infection truly started all this. My son was sick off and on with ear, sinsus, and sore throats when he was very young. The doctors would do the rapid strep tests and they would always show up negative. His symptoms just kept getting worse the last 4 years. No telling how long all this has been building up in his body.

Hi Oivay, Did your daughter get nausated after the first treatment? My son had his first treatment today and about an hour later, the nausa hit. They gave him Zofram and it it helped greatly. Just wondering if this is something that normally happens. BTW, how many treatments did you daughter have? My son is in the hospital and is supposed to have 2 more by the end of this week.

I do this for my son twice a week. It helps with fatigue issues.

Thanks Qannie, Our doctor called last night to explain more of the treatment. He is calling it Plasmaphersis. After my son has the tunnled central line is put in, our doctor will start the next phase of treatment. He will be removing the plasma but putting my son's blood back in. If this makes sense to anyone. He will not be using blood products from a doner, so this sounds like a safer treatment. In this procedure they only take 1 to 1 1/2 liters of plasma during treatment time. My son will be staying in the hospital for treatments until his body can safely tolerate them. Our insurance is going to continue to allow treatments on an out patient basis as long as the treatment is working and progress is being made. My son will be monitored closely with blood work.

Here is a very recent article on Sydenham's Chorea. From research, I am learning that children can have relaspes from this until the appropriate treatment is given. Most of the references at the end of this article can be found online for additional reading. My son will be going into the hospital next week and having a central tunneled line. He will also be starting plasma exchange treatments soon afterwards. Our insurance did approve the treatment. I did not realize the damage that strep could do until I started reading articles. My son would never test positive for strep when he was young. After he started taking antibiotics this year, he started testing positive for strep on a rapid strep test. He had the titer test back in December that checked for past strep infections and the levels were high. This finally got my doctors attention because I reminded him that my son would never test positive on rapid strep test. So my question to him was "When did my son have these strep infections?" I wish I had known to ask for a strep culture and maybe we would have caught on to this part sooner. Rapid strep test are not very reliable. I really wonder how many strep infections that my son had when he was younger that went untreated. http://www.bioline.org.br/request?pe14052 http://www.unboundmedicine.com/medline/citation/15968928/Treatment_of_Sydenham's_chorea_with_intravenous_immunoglobulin_plasma_exchange_or_prednisone

Thanks for sharing and so happy for you and your daughter. May the healing continue and never end.

Here ia a manuel on several diseases and suggested treatments (IVIG/PEX) based on research and other studies. PANDAS is found on page 136. Several different disease are mentioned including Lyme coinfections. http://www.aferesi.it/download/Linee-Guida-ASFA-2010.pdf

Thanks for sending that last article. If I give my son codeine, it makes his vocal tic worse. Is there any way to switch this gene off?

Nitshel, I took my son to an immunologist in December 2013. His medical condition started with a walking pneumonia infection in December 2010. My son had a Mycoplasma titer show up high and out of range 2 months later but was never told this information until 6 months later. My sons symptoms would get worse after he had viruses, infections, and the flu. The immunologist ran testing through LabCorp and our insurance paid on the testing. My son was checked for mycroplasma P, Cytomegalovirus, EBV, Anti-DNase B Strep Antibodies, Herpes Simplex virus, Antistreptolysin O Ab, Chlamydia p, and Parvovirus. The IgG and IgM were checked on all of these viruses. A strep infection can cause Rhumatic Fever and the antineuroal antibodies found in PANDAS. My son would never test postive for strep until this year. The Anti-DNase B strep antibodies test shows the levels of strep antobodies for past strep infections that could be up to a year old. I had no idea that my son had a possible problem with strep until this test was ran. My son also has a problem with Mycoplsama P. because these antibodies showed up again a year later after a test in 2012 showed nothing in his system. The Antistreptolysin O Ab test shows a strep infection that has happened within the last 4-6 weeks. I don't know if past viruese would be causing your son problems but an immunologist could run other test to check for a supressed immune system. Now might be a good time to have that done since your son has not had IVIG yet. From what I understand, IVIG will interfere with that testing. My son has heart and blood pressure problems. He has tested highly likely on the Cunningham test but does not have PANDAS. His symptoms did not happen over night, his symptoms have just keep progressing since he had walking pneumonia. Many of my sons symptoms match rhuematic fever and the Sydenham's chorea that's part rhuematic fever can wax and wane for up to ten years. The vocal tics are are known to happen in males with Rhuematic fever. To help with vocal tics, my son does use Intuniv. However, it does not help when my son's blood pressures fall out. His vocal tic goes wild until I can get his blood pressures to come up.

My son uses the Ultimate Flora 30 billion . He has used this for several years and he has not had any problems. He takes it a night before going to bed. I know there are a few strains that PANS/PANDAS kids are supposed to stay away from because they can make things worse. I have stuck with the Ultimate Flora because it does not have those stands in it. I just wish I could remember the names of those strands. Maybe someone else knows that information and can post it. Whatever you chose to use, I would go low, slow, and easy with the probiotic.