Rachel

Has he been checked for strep or mycoplasma p infections? From research I have learned that a vocal tic can be associated with strep and rhuematic fever. Do the psych. meds. seem to help the tic? They made my son's vocal tic worse and we had to stop them. The tic is much better but goes wild when his blood pressues fall out. I would suspect somrthing else might be bothering the tic. Maybe a virus or allergies? Might want to check for allergies or mold.

I would also like to know how some of these kids are doing. I understand now the differences between low and high dosage IVIG. We need to have a large scale study to figure out which treatment is helping which condition. It would be pretty costly. Or the doctors could start sharing their treatment plans that have worked with certain conditions. So all of our kids could get the appropriate treatment.

Hi SSS My son does not have any active infections according to test results right now. My son's IgG's were out of range with several different viruses and bacteria. Which leads me to believe that this is the cause of his medical condition. His anti-DNase antibodies were in the high range and my son would never test postive on a rapid strep test until this year.Our doctor does not feel comfortable leaving my son on a masssive load of antibiotics. My son was doing this for 5 months before he started IVIG. The antibiotics did help some with his low blood pressures. My son is able to take a little less of his blood pressure medications but he is still taking a very high dosage at this point. Our doctor was hoping the IVIG along with the shot would help more with his blood pressure situation. My son's blood pressures will go as low as 82/65. This has started happening more often in the last 2 weeks. It has been 5 weeks since my son had his last IVIG treatment. I really did not think the IVIG treatment was helping at all but I am beginning to wonder since lower blood pressures are returning. After seeing this change, our doctor may reconsider and add another antibiotic especially if he can not get Plasma Exchange approved through our insurance. From research, I know doctors disagree about when an infection or virus should be treated. Some doctors treat for high IgG's and some don't. Which is confusing to me but I get the idea the high IgG's must be playing into the molecular mimcry theory. How else would we have so many sick children. My son may need more antibiotics but I know our doctor is going slow in this area due to the heart and blood pressure issues. I am glad to hear your comments and take no offense. I have learned so much from this forum and glad that I found it. Keep shouting from the bleachers.

I found some research that indicated bacteria that causes sinus infections can cause this problem. My son had lots of these growing up. So I am wondering about this connection. Thanks for your responses.

My son is being given 2 ML of Bicillin L-A which is penicillin G every 3 weeks. From all the test results, our cardiologist suspects my son has had Rhuematic fever sometime and the tremors that he is having could be the Sydenham's chorea or maybe some type of autoimmune movement disorder. The antineuroal antibodies that are found in the Cunningham Panel have also been found in autoimmune movement disorders. Strep and mycoplasma can be found in autoimmune encephalities. What I have learned from research is that IVIG, Plasam Exchange, and immune modulating medications are used to treat all of these things including PANS/PANDAS. We need to get these mainstreamed doctors to start embracing Molecular Mimicry research or we are going to have more sick kids. My son did have all his IGG levels and subsets done before having IVIG. Here are the results. I have been told everything is in the normal ranges accept his IgA is low but not deficient. IGG1 695 Range 342-1150 T Cytotoxic CD3+ CD8+ Precent 20.7 17-35% IGG2 233 Range 100-455 White Blood count 12,000 elevated IGG3 49 Range 28-125 IGM 96 Range 47-209 IGG4 27 Range 0-136 IGA 56 Range 71-263 C3 complement 146 Range 73-183 C4 20 Range 15-59 IGE 41.8 Range 27-111 CH 50 compliement 553 Range 400-700 These labs have not been done again since IVIG. My son's mycoplasma titers have not been drawn again yet but I do plan on asking about this. I feel like mycoplasma P and strep have created the problems. My son does have a few grass allergies and has no mold allergies according to testing. This testing was done when his white count was elevated but there was no proof of strep. Some of the grasses he is allergic to might have been causing the elevated white blood count. Is there anything here that would be a tale tale sign to recheck for Lyme? My gut tells me that this is all related to strep and mycro p. Thanks for all your help. If this stuff was not affecting my son's heart and blood pressures, I probably would not be getting much help with his medical condition. Our cardiologist is having to do all the work but looks at any research I send his way. Thank goodness for doctors that will think out of the box.

Is this the $200 test? Can this test be ordered online by the patient or does it need the doc's signature? How long does it take to get the test results back?

Thank you so much for your answers. I went back to look on the CDC website and they recommend 2 test. The first test my son has had several times from different labs and it has always been negative. He has had the Western blot a couple of times but not from Ignex. However, I now understand why you needed to do the Ignex testing. The Ignex Western blot will check for several different bands and only cost $200. This sounds reasonable. How long does it take to get test results back? I do have another question though, and hope someone will be able to answer it. If the Ignex testing is done after your child has had IVIG or Plasma Exchange, will Lyme still show up? My son has already had 3 low dosage IVIG and we have not seen any improvement with any symptoms. This treatment did not make any symptoms worse. Our doctor is trying to get Plasma Exchange approved for my son since he did not respond to the IVIG. My son is on antibiotic right now and this cannot be stopped either. So doing the Advanced Labs test is probably not an option for my son right now. I think I have shared with all of you that my son's illness started in the dead of winter with walking pneumonia and the mycoplasma p titer showed up out of range 2 months later. So my gut feeling is Lyme is not the cause of all this. However, if my son does not start responding to treatment, I will have to do some more testing. Lyme or coinfecctions is the only thing that I can think of that might have been missed. The other reason that I have not pursued this route is because of the testing results that came back at the beginning of this year.My son has had more strep and mycoplasma infections this last year. So the next best treatment for my son to try may be plasma exchange but if it makes him worse, I'll be chasing down Lyme and coinfections. However, I would like to know if having IVIG or Plasma Exchange would make testing for Lyme invalid?

I am assuming the 3rd number is your son's range. If so, it looks like he is in range with everything. My son had this testing but his IGA was below the normal range. He is not considered to be deficient. However, he had some additional testing that was done by his immunologist. At the time, my son had the appointment he was coming down with something because his white blood count was up. My son was complaining of a sore throat. His T helper cells count was too low. These are the cells that call out the troops to fight infections. This is how our doctor figured out that my son had some type of immune situation going on. An immunologist could run some additional testing to check levels of other specific cell levels that help fight infection. The cd 57 marker is one used to check for Lyme and immune regulation with this disease. I know just enough about Lyme disease to be curious about accurate testing. Are you still treating for Lyme? Are you seeing any improvement with the IVIG treatments? My son has had three treatments but I am not seeing any improvements with any symptoms.

I wondered about the glutathione. My son has trouble with sulfur. Thanks for sharing that information.

I know this may sound like a strange question? My son has always had a droopy eye lid and when he gets tired, his right eye will look like a lazy eye. Through the past years doctors have asked about this. It does not interfere with his vision but this has been going on since he was quit young. I'm just wondering if this could have been a sign of a motor tic and no one realized this. He has been checked for Graves and Myst Gravis. Any ideas?

I have went back and looked at many post on Lyme disease. So maybe I missed something and you guys can help me out. I went back and looked at all of my son's test results since he was sick in December 2010. He has been checked several times for Lyme and coinfections at different labs. After his main illness began, he was tested at 2 months, 6 months, and 9 months later for lyme and coinfections. All testing was negative and was done by different labs. I know that Lyme testing is not the most accurate from any lab even from Ignex. Is there a Lab that runs an accurate test to check for late stage lyme? I'm talking 4-5 years late. Or is this an impossible test to find?

How long has your son been on the supplement? Sometimes it takes a few days for the body to adjust. My son takes Methyalfolate in pill form by itself. I give him other supplements but they are not all together in one supplement. I was wondering it there was something else in the supplement that might be causing this symptom to increase. I have also done the 23 and me testing results with my son and I have really gone slow about adding supplements. My son cannot take supplements like this because if he gets worse, I can't figure out what is causing the problem. That's the reason I have to stay with single ingredient supplements. However, I do give my son some of these supplements to help the methyfolate to absorb better. BTW my son's vocal tic gets worse if he misses a dosage of his methyalfolate. You may want to try using single ingredient supplements to figure out what's cause the symptom to increase.

That's interesting. I posted this because of something I ran across on Rheumatic fever. The material is dated 2011 and I've seen it mentioned it earlier research. I was thinking about have it ran on my son because it can be an indicator of Rheumatic fever and Sydenham's Chorea.

I am trying to learn more about this testing. Is this testing still in research or has it been released? I am understanding it can be used to identify patients that have had rhumatic fever in the past. Has your child had this testing and what did it mean towards their diagnosis? Was it helpful in getting the treatment that was needed?

Thanks so much for this information. I am going to see if our doctor will check for this in my son. I am beginning to understand where the autoimmunity part comes in. I was able to read a section for the book online entitled Inflammatory and Autoimmune Disorders of the Nervous System in Children. On page 125 in the last paragraph it states that " Strep induces vasculities of the medium-size vessles leading to neuronal dysfunction. Vascular lesions could be produced by antiphosolipid antibodies." Did your daughter by any chance have strep infections? I'm so glad to hear that your daughter is doing so well. Is she going to continue doing the treatments for awhile longer or does she get a break? I was just wondering how long she would need to continue with the treatments. Five years is a long haul for any chronic illness. You can only view certain parts of the book but Chapters 8 and 9 have some really good information on Sydenham Chorea and PANDAS. Here is the link. http://books.google.com/books?id=jwlt4t3GKj4C&pg=PA125&lpg=PA125&dq=antineuronal+antibodies+found+in+rheumatic+chorea&source=bl&ots=N9mTNgW_gX&sig=uBRs3U7HRBXJgwfJbEjCZ0sZAT4&hl=en&sa=X&ei=Np3OU7qNLqOd8QHJpoCwBw&ved=0CB8Q6AEwATgK#v=onepage&q=antineuronal%20antibodies%20found%20in%20rheumatic%20chorea&f=false

Here is a good article that explains molecular mimicry and how it gets started. I have started doing searches with this word and other diseases. I'm coming up with some interesting articles. http://www.japi.org/march_2010/Article_05.pdf

I decided to do another search this morning on Mycoplasma Pneumonia and molecular mimicry. I found an interesting study on on high levels of IgG MP and a symptom it can causes. Thought it might be worth sharing. http://www.jidc.org/index.php/journal/article/view/21727645/565

Can Lyme show up on a western blot several months after the bite has happened? I'm asking this question out of curiosity. When my son had this testing done, he had it done through several different labs. The results are all negative. His first WB testing was done about 2 months after his symptoms started. He had another WB test done 6 months later and thenanother WB about 10 months later. As I read through many post, I have picked up on other testing that indicated signs of Lyme through the immune testing. I really do not think that my son has Lyme because his early testing does not show any signs of this. However, I keep this diagnosis on the back burner because testing is so unreliable. Thanks for the link on Dr. O'Hara. I'll watch it and maybe learn some more useful information.

I have read some articles about this syndrome but I am not getting a clear picture of what the symptoms actually are? What symptoms does you child have from this syndrome? My son has not been checked for this but the more I read, I am wondering if this could be part of his problem. Is there treatment for this?

If I saw improvement, I would continue with meds. until doctor returned a phone call. I would also be calling the doctor or leaving messages everyday until a call was returned. You have a right to be concerned and the doctor should be returning their messages even if they are on vacation. Our doctor does return those calls even when he was on active duty in the reserves. Hang in there and glad to know that you are seeing some improvement. This should at least be somewhat of a clue as to what is going on in DD body.

Here are a couple more articles that may help you. http://beverlyhillsshrink.blogspot.com/2012/03/adult-pandas-bare-facts.html http://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment

Is she back to sleeping? I know when my son gets a new infection or virus, his sleeping cylces are terrible for at least a week or more. So anything I find that will keep the sleep cycle in place I stick with it. My son does have a hard time falling to sleep at night and some nights are worse than others. I've learned that his quality of sleep is determined by what's going on in his body. You might want to look up the side effects of your medications and see if any of them will affect sleep habits.

Hi and welcome to the forum. I would encourage you to look for another doctor that can help. I found an article on OCD and adults. Maybe this this will help and hopefully some else on the forum can recommend a doctor that sees OCD adults. http://www.turkpsikiyatri.com/C18S3/en/therapeuticResponse.pdf I have a son that has a vocal tic disorder and ran across this article awhile back.

I would not cross off autoimmune off your list. Lyme and other viruses can be autoimmune if they cross the blood brain barrier. Has your son had plasma exchange? Hopefully you will get some answers when you go to Standford. It sounds like youre son has been sick for a very long time. Started out mild in the beginning and then eventally got worse. Getting to the right doctor can make all the difference in the world. Keep us posted on the out come of the appointment.

Sleep is very important. My son has sleep issues. If he does not get a certain medication, he will not fall asleep or stay asleep. He goes to bed at 10pm and the alarm goes off at 9:00am the next morning. I do not give any meds after 10:00pm. My son does take magnesium citrate at night. However, he also takes a probiotic, P5P, vitamin C, and GABA. An hour before this he takes extended release clondine. Sometimes it does take him an hour or so to fall asleep, but once he fall asleep, he stays asleep. My son has trouble with hormone levels at night and will wake up drenched in sweat if I do not give him this combination. Clonidine helps with high norephrine levels. Is there anyway to move your 12pm dosage to another time frame? I realize your daughter must have these meds due to her medical issues. Is there a way to do a dosage at 8:00pm? Sleep is important for her and you. I know this is a tough issue to deal with because I had to have help from a doctor to get all my son's medications on the right schedule. Keeping a bed time routine is must for healing to occur.