Rachel

3bmom Thanks for the information on Quinoline Acid. I have made another connection. My ds has high Kynurenic Acid and this is connected with Quinoline Acid. Here is an article that made this easy to understand. It also block the anti-NMDA receptor antibodies. I will post some more articles later on but here is a very easy one to understand. http://www.corporamed.com/documentos/organix/articulos/Quinolinate-Kynurenate.pdf

Here are the Taurine articles that I found helpful. http://members.upnaway.com/~poliowa/Taurine%20Exercise.pdf http://www.nutri-spec.net/articles/PDF/taurine.pdf http://www.jbiomedsci.com/supplements/17/S1 http://www.rlcure.com/glutamate2.html

So far so good with the Taurine. No additional vocal tics or other symptoms. Blood pressures are staying up and Taruine helps balance Electrolytes. The effects have been good on my son so far. There are several PDF studies on Taurine and it's benefits. I'll post the articles, if someone wants to read them. 3bmom The gatorade that is already made up has those chemicals added to it. I use the powered version and understand that it does not have those chemical added. However, I will double check the label. Are you using the Quinolinic Acid? I have not heard of it. I will be doing some more research.

Thank you for posting this article. Glutamate may affect the esphogas (sorry spelling). Which got me to thinking about something else, I wonder if this would cause my son's vocal tics. Does glutamate affect the Vagus nerve which in return affect the esphogas. More research to do.

LLM I have got to check out choline. I have never heard of it as a supplement. Will it raise or lower histamine levels in brain? My son does take Zertic in the morning and Singular at night. So I am wondering why he has the high histamine levels in the brain. Are histamine levels normally high when you have high glutamate, dopamine, and Norephinephrine levels in the brain? Anyone know? My son has had an EEG and it was normal. He has also had all the other test to check for seisures and they were normal also. Maybe it's time to take my son off Zertic and see what happens for a few days. I will be doing some more research on this topic. Chubbermommy My son is taking 250mg of Tarine and 200mg Magnesium Citrate together 3 times a day. An hour before breakfast, after lunch, and before bedtime. I have to make sure magnesium gets absorbed well before my ds takes the Bixan. Bixan can mess up electrolyte levels. However, I have been alternating water and gatorade to help with the balance. Before taking Bixan, I had to give my son 10 grames of salt tablets throughout the day. Since last Tuesday, I might be giving one gram of salt at night my son's has last dosage of blood pressure medications. My husband and I see this as major improvement. I had to call the company that I ordered the True Calm from because it never arrived this last week. So they sent it out on Friday and UPS it. I should get it Monday or Tuesday at the latest. I will only use this at night with my ds. GABA makes ds too tired in the morning, so he takes the Tauine and magnesium in the morning. His moods have really improved, more focused and more alive. My son was just tired all the time and had a hard time getting awake. However, once he gets up and gets dressed, he is alert and ready to start the day. Just another big change, that I hope is here to stay. Can't wait to get my son started on True Calm and see what it does. Momwithocdson I have not heard of this medication. I will do some investigating. Thanks for the information. I do think there is a connection but just cannot seem to find a doctor to find the connection. Still have more questions than answers but I am so thankful to have found this forum. I keep asking doctors questions and hoping I'll get them to think out of the box. Rachel

This is another article that really caught my attention on Glutamate and how to lower it naturally. Some of you are already doing some of these things but some other supplements have been mentioned. I have decided to try the supplements first before I go gluten free with my son. http://www.rlcure.com/glutamate2.html

You are right Nancy. Low and Slow. If it were not for my son's last testing, I and the doctor would have not figured out that this was part of his problem. This doctor has mentioned the possibility of ALS but my son has tested negative for this. My son has some tremor problems and the doctor thinks the high glutamate levels may be the cause. I am hoping it is reversible and that my ds will not lose his physical mobility.

Glad to hear the higher dosage is working.

I have not found to much success with GABA itself. I have been using this with my son for almost 3 weeks. It makes him really tired so I have started using it only at night with Taurine. Still waiting on True Calm to arrive through mail. I have started using a low dosage of Taurine with my son. Taurine will raise GABA and does lots of other things. There is documented research on Taurine. I like the effect it's having on my son. Taurine is also supposed to deregulate CaM Kinese. I'll try finding my research. CaM Kinese will elevate Glutamate and Norephinephrine levels. I'm hoping I'm knocking down CaM Kinese levels and raising GABA. Taurine will act on it's own and does not need other amino acids but does need B-6. Taurine will also help regulate electrolyte levels, which is a big help with my son's other medical issues. It's like rowingmom said, sometimes you just have to try other things when you run out of options ( testing and money). Start low and go Slow with any natural supplement. Rachel

I am learning so much from this fourm. I keep digging and learning more. This post was very helpful. I thought that someone else might want to read it.

Hi Cara, Finding the right doctor is a plus. Hang in there! My ds has been sick for a very long time ( 3 years at least). Finding the right doctor and treatment plan is what counts. Taking it day by day is what I do. My ds does school online due to his medical condition. If the probiotics helped, you may have stumbled on to a gut issue. Listen to your instinct. If this brand of probiotics makes things better, than don't switch. Any sign of improvement, be sure to tell your doctor about. Those small improvements are worth every penny. Would mind sharing what probiotic you are using with your son?

Have you tried any natural supplements to help with the tics? There is a list and suggestions on a post under tics and touretts forum. Just need to be careful and only add one at a time. Sometimes the supplements can make tics worse. Hope your appointment goes well with the immunologist. My son just started seeing one this last year and this doctor has already uncovered part of my son's problem. Flares are no fun and getting through them can be rough. Hope today is easier for you and your son.

I guess the most frustrating thing to me about all this is why don't our doctor's do rechecks after our kids have major infections like strep, flu, sinus infections, and ear infections. I hate to say this but I think a blood test to check white blood counts should be mandatory when ever a person is sick. I wonder if some of these illnesses could have been preventive if our doctors would have insisted that we brought out child in for mandatory follow up and blood test. I know as parents we all get busy and some have work responsibilites. I fell into this catagory but when things didn't seem right, I did my best to get my child back into the doctor. I keep researching and finding some natural things that have been used to ericate lyme and co-infections. and other infections. However, I'm kind of scare to try some of these things without doctor supervision. I do think that most infections can be cured but the medical research is not intense enough to get this job done. So in the mean time, we suffer through the infections until a treatment is found. My hope is that all our children can get well soon and that more money will be put towards medical research.

I would not recommend that you see another neurologist. They do not know a great deal about POTS. You need to find a dysautonomic specialist. The online website DINET Dysautonomia Information Network has a physicians list. If you live in New York, Dr. J Stewert would be a great doctor to start with and is a leading specialist in this area. This net work does have a forum and it is free to join. I am a member because this is what my son was first diagnosed with. Some patients are born with this condition. Hope this website can help you out. Wishing you the best.

We have two cats but none of us have cat allergies. However, I do use the Allerpet product because it does help with seasonal allergies that we have. We do go outside and what we bring in on our shoes may wind up on the cats body. I sweep and vacum 2-3 times a week and use the allerpet during ragweed season.

It sounds like you need a second opinion. The blood flow in the brain is something that is seen in Postural Orthostatic Tachycardia Syndrome (POTS) but can probably be part of other medical conditions. POTS is my son's orginal diagnosis but is being caused by something immune related. Your brain needs oxygen and it gets this through the blood flowing through the brain's blood vessles. Some patients that have POTS will pass out if they are not getting enough oxygen to the brain. These patients cannot stand for a long time before dizziness starts. Does your daughter pass out or have a lot of brain fog? Maybe has problems thinking clearly or does not remember things very well. My son has these problems. I would suggest that you get a second opinion because it really does sound like something else is going on. Wishing you the best and hope you get answers soon.

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?

I saw it on the world news this morning. I hope these families get answers and help they need.

My son has had a few tick bites but never had any reactions. He was also checked through a couple different labs ( Lab Quest and Lab Corp) for Lyme and co infections. Two lyme test were negative and one lyme test was done at the same lab that checked for Myco P titers (which came back high out of range). My son never had the high fever, chills, nausea, vomiting, liver problems or hemolytic anemia. A High mycoplama P titer showed up out of range 2months later after walking pneumonia. So I am just about to settle on the fact that my son has high Myco P antibodies in his body because of past infections. Myco P is what has shown up as high on all his testing. So I'm not sure if I need to chase down the Lyme or Co infections anymore. From research, I'm also understanding the Myco P virus can cause other infections such as ear and sinus infections. My son had a lot of these when he was younger and was treated with antibiotics. If the antibotics don't get the infections cleared up then these things hid in the cell and keep reproducing themselves. I think this is what has happened because Myco P shows up in testing.

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 beginning to see some improvement with my son on the Bixan. I usually have to give my son 10 grams of salt tablets through out the day along with his medications to help keep his blood pressures up. Since last Thursday, I am only have to give 3 grams of salt. I'll take this improvement and so will the cardiologist. His blood pressures are staying up. Which makes me wonder if these antibodies that showed up in the brain affected his heart. I am still waiting on a test from Dr. Cunningham about the antibodies and heart. I am still giving my son 300 mg of GABA and 250mg of Taurine at night and first thing in the morning. I have been able to cut down my son's extended release clonidine to .2. I should be getting the True Calm in the mail today and will try giving it at night instead of the seperate GABA and Taurine.

What is a home rapid strep test? I have never heard of this. Please share. I don't know if this antibiotic is in the same family of Azthromyican but my son caught strep while on Azthro 250 mg a day.

Thanks for digging the old post up.

Rowingmom, I'm guessing that you use this combintion because of the different strains and I had not thought about this before. I have read somewhere that there are a few stains that a PANS/PANDAS child needs to stay away from. Is this true? I only use one brand so I can avoid those strains.

My son takes 5,000 of D3. He just had his levels checked and they have dropped down to 43. He was at 60 but does not get any sun at all. My son's moods are better when he is at a higher level. Our doctor has told us to bump him up to 10,000 until summer or until we can start getting him out into the sunshine for a stroll in his wheelchair. I have also read that there is a connection between Myco P and vitamin D. Vitamin D is supposedly helpful in fighting this virus according to Garth Nicholson.

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 hot when this happens. This happened when he was also on the last antibiotic. I have also noticed this morning his skin around his noise is dry and flaky. Could this be herxing? If so, is there anything that makes this more bearable. I am giving advil on a schedule. One other interesting thing that has been going on since my son has started this last antibiotic, is that his blood pressures are staying up. If this continues, I'm hoping I can lower his blood pressure medications this next week after I talk to his cardiologist. Hope everyone is having a good day.