Rachel

I would encourage you to stay on the minocycline for at least 3 months and see what happens. I was told by doctors it would take that long to see the antibiotic would help. The antibiotic really needs to get into her system.

How high was the Cam KII? My son was 234 but his Tublin was only 1000. It would be intesting to see if you could find research on just the Tublin and what other illnesses it is associated with. Lyme does come to my mind because I know in the beginning that I found research that indicated these things found on the Cunningham panel did show up in Lyme, and a few other things. This is a scary thought, I know but I wish there was more accurate testing in the Lyme area.

We are in the process of getting the whole family tested. I have also been doing another heavy duty round of cleaning . I will be buying new toothbrushes for everyone in the family. The culture was sent off and I'm waiting on results. I called our vet about the cats. Cats do not get strep or carry strep, but dogs do. Thank gooodness we did not get him a service dog. Our son is eligible for one but we want to wait and see if he will need one later on. Right now my son gets the Pencillian G shot every 3 weeks and he was put on AMOX/K CLAV 875 2x daily for 10 days.

Hi Cara, I still think you are on a healing road with your son. Have you ever read the book Saving Sammy by Beth Malone? They had a lot of ups and downs. Her son had to stay on antibiotics for a least 5 years. If I remember correctly. Hopefully you won't have to keep your son on them this long. Have you tried cutting the antibiotic back to half of the dosage or would his tic still come back? Half the dosage would be better than full if it did not cause his tic to come back.

Hi Cara, It really sounds like your son is in a good place healthwise. I have put Lyme on the back burner because my son's testing was all negative too. He also had his test from the same labs you mentioned. My son is just starting his journey with IVIG but he is not in a better place yet. He is having issues with strep. He also has vocal tics and they flare with infections. Otherwise he has very little trouble with them since he has been on a medication called Intuniv. I have read from research that children may eventually outgrow PANDAS. Maybe this is beginning to happen for your son. As the immune system matures, many of these symptoms will go away with proper treatment. It sounds like you may be there. I am happy for you and your son. Please keep posting about the new antibiotic. I think our next step is going to be adding another antibiotic to my son's treatment plan. Take care and keep updating.

He does have tonsils but it's too big of a risk to do the surgery. The last time he had an outpatient procedure done, his heart rate went way too low. They did do a culture. Our next step is test family members. I'm beginning to wonder if someone is a carrier. No one else in the household is sick or feeling bad.

My son had an IVIG treatment 2 weeks ago and now has strep. I just don't get it. He is homebound. Is he getting strep because someone in the family has been around a person that has strep. Are we bringing it home to him or is the IVIG lowering his immune system. He just had a penicillin shot yesterday morning and he woke up with a fever this morning. I took him into the doctor and he tested positive. Is it normal to get strep while doing monthly IVIG treatments? His vocal tic, headache and tremors are much worse. I just want this nightmare to go away.

King Arthur Flour website has some really good recipes. The blueberry muffins and pancakes have been a big hit. I have not taken the whole family gluten free but I have been doing it with my son. We have been on it for 6 days and I can tell a difference in my energy levels. I cannot see any difference in my son and my son does not feel any differences yet. However, our cardiologist said to stay on it for a least 3 months. He knows it will take a load off his immune system. Our evening meal is gluten free and the whole family has it. No complants yet. We had chicken nuggets and oven fries last night.

The test result that I got back on my son showed all of the test results. So I'm guessing that all of the results have to be in before you see the unlikely, likely or highly likely result. Our insurance did pay on 50% of the testing but we had to pay some up front before the test could be ran.

I started a gluten free diet with my son on May 30th. So far so good. My son had his second IVIG treatment that week also. I am not seeing any improvements yet with IVIG but our doctor did not think we would see any improvements until maybe after the 4th treatment. My son does have a new diagnosis. On the hospital orders it stated Antineuro-Autoimmune Antibodies of the Autonomic Nervous System with POTS Secondary. What a tongue twister of a name! Edit: My son is currently involved in 2 studies because of his medical condition. I wanted to share the research the that Dr. Cunningham was been doing with the POTS research doctor Dr. Kem at OU. http://jaha.ahajournals.org/content/3/1/e000755.full?sid=2a92ae76-d6fc-491c-9e79-43190d584090

Giving 2 choices does help and also helps with the family budget. So glad you are seeing some improvement.

Do you have a doctor that might run a neurotransmitters test? My son had one about 6 months ago and his glutamate, histimine, norephrinphine levels were very high. If neurotransmiters are out of balance this could be causing some problems for your daughter.

How soon could you tell the diet was working?

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/

Thanks for sharing this information. I will email my doctor and ask him if he know anything about this.

If you are trying to boost your immune system with olive leaf oil, another good product is Sympiotics Clostrum with olive leaf oil formula. My ds cannot take it because it lowers his blood pressure too much. However there are several good reviews over this product. My son is able to take the Symbiotics Colostrum Plus which has helped him with growth and puberty issues.

I'm wondering how soon it will be until our main stream doctors catch on to this. The more I think about this, it really does make sense. I'm wondering if this is the reason why my son never tested positive for throat swabs until this year. Is the toothpaste and mouth wash by perscription only? If so I am going to mention it to our doctor and see if we can get a prescription.

Never Ever Give Up. My son has been sick since December 2010 and has not been able to go back to school. However, I have not given up hope and neither has he. He wants to go back to school even if it means being in a wheel chair. However, with a comprimised immune system this is not possible at this time. His doctor has told us that it is going to be a long haul. My son just had his first IVIG treatment 2 weeks ago and will be going through another one in 2 weeks. He goes to school online and skypes with family and friends. This is not much of a social life but it's the best I can do for him. His big brother chose to do online schooling also so he could stay home and try to keep little brother's spirits up. There is a 3 year age difference between them. Life does not always work out the way you think it should. Be thankful for the small victories and positive attitudes. All I can tell you is to hang in there and Never Ever Give Up!

If you have had this panel ran, I would like to know what symptoms your child is experiening. My son tested highly likely after his symptoms flared but he has also been diagnosied with another medical condition (POTS). I know some of the symptoms that he has does not belong to POTS and I was trying to figure out what goes with the anti- neuroantibodies that are found in the Cunningham Panel. My son is still in this study and the second part of the study deals with the antibodies for the heart. These antibodies have also been found in my son. I understand that these antibodies are associated with scarlet fever or rhumatic fever. I have learned that these illnesses can be caused by strep. However, I would really like to know what symptoms are associated with the brain antibodies. I was sent a couple of studies along with the test results but they did not go into detail about the symptoms that the kids were experiencing. I have found some information on scarlet and rhumatic fever symptoms. I suspect that my son probably had rhumatic when he was three years old. So if this happened first then I think the brain antibodies would come next if the strep did not get cleared up. Would like to hear what symptoms the brain antibodies are causing in your child?

Have you tried a magnesium citrate supplement? This keeps my son regular but I did not give the supplement to him when he was in the hospital for the treatment. I am going to ask his doctor if I can give it to him this next time while he is receiving treatment. My son was back on track 4 days after I start his dosage back but I do plan to increase his water up take before his next treatment. Maybe, he will be able to avoid the increased headache pain and constipation issues. Miralax also works well for my son but he's 14. Don't know if it can be given to a 6 year old child.

Thank you so much for this information. Our doctor said to push fluids but did not give us a a specific guideline. I have marked our calendar so I know when to start next time.

My son had trouble with constipation afterwards.Sorry if this is too much information but I need some information about how to prevent this from happening again. If it's at all possible. My son normally drinks fluids throughout the day because of his low blood pressure problems. So I thought he would be getting enough fluids in. Is there a rule about how much extra fluids need to be taken in according to body weight? Also how many days before infusion should I start pushing more fluids? Besides water is there any other fluids that I should be pushing or is water the best thing to do? I want to do a better job of this before the next infulsion. Any suggestions would be appreciated and hopefully it will be a better experience this next time around for him. I do think he is finally back to his baseline before he had the IVIG. It did take 5 days, and I'm hoping for a little more improvement for his part. He felt pretty rotten the first three days of being home after the treatment. His headache and pain levels did go up. When this happened he toldme he did not want to go through another treatment. However, I was told in advance this was to be expected.I just don't want him to get discouraged and was hoping someone might have some additional tips on how to make his next treatment go smoother.

My son did not take the 2nd one because it is optional. Our doctors told us not to give him any more live vaccines. However by age 10, he had all of his vaccines.

Rheumatic Fever of the Brain sounds soooo much better than PANDAS. My son's pain and headachache levels have finally gone back down to the levels that he was at before he did the IVIG treatment. I'm hoping these will go down even more because he has asked if he has to go back for another treatment. Our doctor said we might not see any major improvement until after the 4th treatement, which is a bummer. For an older kid that's been sick for so long, he is wanting instant relief. My son has never resisted treatment but going through more misey to get relief may become a challenge. Has anyone else had this problem? How did you keep pushing though it?

Interesting. My son has a vocal tic and it did not increase it either. However, I have had to take him off of it because his sulfate levels are too high. Taurine will increase those levels.