Rachel

Our doctor ran a test through LabCorp. I have a copy of these test results. They were ordered as separate test. He ordered the following: Chlamydia pneumoniae IgG, IgM, Parvovirus B19 Human IgG/IgM, Mycoplasma Pneu IgG/IgM, Cytomegalovirus(CMV) IgG, EBV Ab VCA IgG, Anti-DNase B Strep Antibodies,HHV 6 IgG Antibodies, Herpes Simplex Virus I/II IgG, Antistreptolysin O Ab. My son had antibodies that showed high in HHV 6 IgG, Myco P IgG, Parvovirus, and the Anti-DNase. My son started Bixan this last Friday because the Myco P IgG was 953 (normal range is 0-99). I really new to all this also but evidently these high Myco P antibodies are a problem. Three years ago, the titers were high and out of range. Our doctor is going to be running some more testing. When I get those results back, I'll post the information. I don't know what to tell you about the Cunningham Panel. My son had the testing done because of vocal tics that started after throat problem in August 2010 . We thought we had missed something. His first test was done in August 2013 and was neither positive nor negative. My son had a double ear infection in October 2013 and his symptoms flared. He was retested and his results were highly likely. Our doctor is thinking that the Myco P may be the problem.

It's about time. This great! I just hope it will get the coverage it deserves. If this happened in a few more school districts across the United States, maybe our medical professionals will understand PANS/PANDAS is the real deal.

Was the the ANA done before or after your Cunningham test? My son had a negative ANA test 2 years ago but last October he had a highly likely Cunningham Test after a double ear infection. My son's doctor's are thinking this is some type of immune problem. My son has also had recent testing that indicates problems with viruses.

You are not alone. I share your pain. My ds has been sick for a long time. I am still trying to get a final diagnosis. You have found a great forum that gives much support. Hang in there.

I totally agree with this. Even though we are not totally not gluten free yet, what I fix is what you have to eat. I have realized that some of the evening meals that I have been serving are almost gluten free. I am assuming if you do not feel full or satisfied then you eat more gluten free food. My 16 year old son has a bottomless stomach at times.

Just a thought, but have their iron levels been checked? I'm just wondering if antibiotics will miss with these levels. When my son was anemic 2 years ago, I could not hardly get him to eat. It was bad but once the iron levels were there, it was much easier.

Thanks for posting this. I am learning so much on this forum. I have decided to go ahead and try the True Calm with my son. He seems to be able to handle a low dosage of GABA (300mg) . I have also read that taurine will disregulate CaM Kinese. If I can break the pill in half, I am planning try to start with that dosage first. I will post the effects. My son has very high levels of glycrine and I have read this protects the brain and keeps depression at bay.

I've been doing a little more research and found a PDF study entitled Calcium/Calmodulim-independent Protien II (Ca MKII) Inhibition Induces Neurotoxicity via Dysregulation of Glutamate/Calcium Signaling and Hyperexcitability. This is a free research article. It was very interesting and if the CaM Kinese level is high then it can cause high levels of Glutamate in the brain. Maybe this is part of my son's medical condition.http://www.jbc.org/content/287/11/8495.full

What about spices? We like flavor in our food. Some say gluten free but are they msg free also?

You need something to build up his immune system. My son takes vitamin C and fish oil. Has your doctor suggested anything specific? The HHV 6 was also showed up in my son's testing along with Myco P. My son has just started on a new antibiotic. My son's doctor also ran a test that checked on vitamin defiencies which would help you determine nutritional needs.

Hi Everyone, I would like to know some more about the product True Calm. Is anyone using this? I found an old post and have been trying to get back to it. I put the name of it in the title in case someone else wanted to read it. I'm glad I made a copy of it because I can't seem to get back to it. Maybe someone else can bump it up. There was so much in this post simular to my son's condition (low GABA and High Glutamate). After reading this post, I'm wondering if my son does have a problem with MSG or gluten. Is it true the CaM Kinese can elevate Glutamate levels in the brain? According to my son's last Cunningham panel, his CaM Kinese is very high. The person that wrote this post was fcefxer (Nancy). I tried to pm but she has not been active since last Oct 2013 and I could not leave a message. My son has high Dopamine levels so I am not willing to give him Delsym. However, I would like to know if anyone is using True Calm and if it seems to help. I would also like to be able to contact Nancy and ask about her children's progress. She stated that this product could pretty well control the PANDAS symptoms. I would really be interested in knowing more about True Calm. My son is already taking the same B-12 shots and we have seen some improvements with fatigue, mood, and more alert during daytime hours.

I'm just about ready to take the plunge and go gluten free with my son. Last Saturday, when the doctor was going over results, he asked if we ate out much. This is a very rare thing for us to do. He said that MSG could cause high Glutamate and low GABA that showed up in the neurotransmitter test. I've been researching and it seems like there is a connection with MSG and gluten products. Is this right? I'm also beginning to understand that it also occures naturally in our foods such as vegetables and fruits. I'm about ready to plant my own garden. Is it possible to was this stuff off your fruit and vegetable or do you have to buy organic? How do you avoid MSG? Does this show up in food allergy testing? I have been going back and looking at the post I did earlier on Gluten Free. Thanks for all your answers. I have been working on a menu plan but I still lack some confidence in trying to pull this off. Am I dealing with a double edged sword trying to go gluten and MSG free? Is it possible to do both? My son really likes pasta dishes? Can anyone recommend a brand of noodles to try creating mac and cheese and spegittie?

Has anyone done the BH 4 Test? This test has to be sent to France. From what I researched it looks for a Tetrahybiopterin defiency. The doctor's nurse said it was another marker for inflammation. So I am a little confused. When I talked to our doctor on Saturday, I mentioned to him about my son's face rash and the rash that keeps coming and going on his arms. I sent him pictures of what it looked like. He thought this might could be connected to MCAS and suggested that we have this testing done. Is a Tetrahybiopterin defiencey related to MCAS?

My son takes the magnesium citrate. If your body gets to much, you can have very loose bowels. I had to monitor it with my son to find his correct dosage. He takes 200 mg a day. He is 13, 5' 10" and weighs 180lbs. With the long term ABX, you need a probiotic. Several good brands out there. My son takes his at bed time. May I ask how long you have been on the Avti Viiral? Has it helped?

DeDee I would like to pm but box is full.

Whenever my son tries to stand up, the tremors get worse. We do not know what is causing the tremors. I questioned the doctor about this because I was wondering if it had something to do with the high norepinephrine levels. The doctor said he did not know but would check into this and see what could be done. My son has been on gabapentin and Lyrica before. We had a really bad experience with gabapentine. His dosage was being raised every 3-4 days and he began to get weaker and weaker the higher the dosage. He became so weak the he could not sit up without help. It was like he lost muscle control. It was horrible. We have video's of all this. We had to rent a body lift to get him from room to room. He could not even use a wheel chair. I suspect this medication messed up his brain signeling. I am not willing to put my son back on this prescription. He has also tried Lyrica and was on it for 6 months. I saw no improvement with symptoms and my son could not tell any difference. He gained weight on this medication.

Hi Everyone, I got to visit with the doctor about my ds testing. Our doctor is very concerned about the high mycoplasma antibodies. My son had this test two years ago and everything was in range. This next week my son will be rechecked for strep and will be put on Bixan 500mg twice a day starting next Friday. Does anyone know how long it will take this antibody to get into the system? I have read that most doctor give the antibotics at least 6-12 weeks to see any results. Is this basically what I can expect when starting new antibiotics? My son has been sick for over 3 years and I would like to see him get some relief from some of his worse symptoms. Our doctor is checking into some more natural things to see if he can get my son's tremors to stop. The tremors can happen any time but they are much worse when my son trys to do any exercise. My son has not able to stand or walk for over a year. My son's testing also revealed low C, D, B2, B6, B12 levels, Molybdenum, Zinc and a-lipoic acid. I will start adding some supplements to get these levels up. These levels showed up on a Genova NutrEval FMA amino acids test.This is really a good test to have done. It gives information about amino acids, essential and metabolic Fatty Acid Markers, Oxidative Stress Markers and metals. My son's levels were fine on the rest of the test. My ds aslo had a Neurotransmitter test done through Pharmason Labs. The doctor is concerned about Low Gaba, High Glutamate, High Norepinephrine, and Low Epinephrine. To try and get the Gaba up, I will be giving my son a Gaba supplement at night. Has anyone else done this? If so, how long was it before you saw any improvements in symptoms. Our doctor is hoping this wll help with the tremors. Our next step will be to work on the Norepinphrine and Epinephrine levels. Just wanted to give an update on my ds and hope this information on testing may be of some help to someone else. Rachel

In a recent test my ds showed a high level of histamine. My son also has a rash that comes and goes on his face. From time to time he will break out in a rash on his arms. I spoke to his doctor about this recently. He is going to run a test to check for Mass Cell Activation Disease. My son does not have any food allergies but does have seasonal outdoor allergies. He was recently tested and it showed he had allergies to 3 different types of grasses. My son takes Zertic on the morning and singular in the evening.

My son has vocal tics but his tics do not improve on a steroid burst. A steroid burst makes him worse.

That's really good news Quannie. I am concerned if my son is going to need IVIG. Insurance does not recognize PANS or PANDAS as medical code. AE makes more sense if the antibodies can be found on the brain. However, these things are not always easy to catch either and many doctors are not open to that concept yet.

The AE diagnosis is interesting because the doctor we saw in Texas diagnosied ds with unspecific encephalities not PANS. The first major symptom that my son had after walking pneumonia was a headache and then scalp pain. His symptoms have just gradually progressed with each illness. After each illness, my son's health condition went down just a little further. I have seen the video but have not tried having him draw the clock. He is having more memory problems. My ds is also beginning to realize that things are not as easly as they used to be. I have finally gotten in all of his new testing and will be having a phone conference with this doctor on Saturday. I am curious what he will diagnosis my son with. My son does not meet the criteria for PANS or PANDAS accroding to NIH but has all antibodies in the highly likely catagory on Cunningham Panel.

My son takes the extended release clonidine at night. He was waking up at least once an hour. We tried the regular clonidine but he was unable to sleep through the night. He takes .3 of the extended release, which is a big dosage but at one time he was able to take .2. I am hoping to take him back down but ever since he had a double ear infection last October, I have not been able to take him back down on the lower dosage. I have currently got back some testing on my son that indicates he has high norepinephrine levels. Clonidine will also help to lower these levels. My son also has vocal tics and takes Intuniv during the day time. He was switched to this medication when the clonsapam stopped working for him. Intuniv also helps regulate serotinon and dopamine levels in the brain. My son has had problems with this also.

According to a recent test, my ds has high dopamine, glycine, glutamate, histamine, norephinephrine, and Kynurenic Acid. This test was from Pharmasan labs. I just got the results the other day. My son's dopamine levels at one time were very high but are only 7 points out of range on this test. His Serotonine is finally in the middle of the range. At one time his serotonion was not measureable. My son has vocal tics also. Last year his vocal tics got really bad. He was on clonsapam and it just stopped working. We saw a new neurologist and she looked at all his neurotransmitter testing. She put my son on Intuniv. His tics are well controlled and this medication also helps regulate serotinon and dopamine levels in the brain. I will be having a phone conference to go over all the new testing that I have just gotten back. I will share any new information for trying to lower these other levels. I really think the Intuniv has helped with his serotinon and dopamine levels. I hardly ever hear his vocal tic unless he gets sick. Hope this information helps.

Cara My oldest son got strep first and he did not spike a fever with the strep. The strep culture is more accurate than the rapid strep test. My older son also had mono last year and his immune system is not the same. When he mentions a bad sore throat, I take him to our primary care doctor. Our primary care doctor understands that our family does not need to be spreading any virus or infections to our PANS son. BTW you said you were gone a week, could it be dh has the infection or virus?

The test should show in the likely range. My son's CaMK was 197.