kg5123

Hi coco I think thyroid is a very elusive but intriguing issue for my 15-year-old son. When my son's PANDAS episodes were pronounced significantly in December 2008, his TSH level was also abnormally low indicating he had acute hypothyroditis. He had his TSH reading checked because various apparent thyroid-related symptoms including excessive complaint of hotness in the middle of the severe Connecticut winter storm, constant sweat and tendency to run out of breath even with mild exercise. Those day, his seemingly typical PANDA symptoms of severe vocal tic and OCD frare-up came together with the thyroid problems. At that time, the parents suspected that the thyroid pboblem triggered tics and OCD. This was because removal of the thyroid problems by taking beta blocker led to the easing of tic. But by now, the parents have been convinced that both symptoms -- thyorid symptoms and tics -- had been caused by the same problem of low IGG and failure on 14 of 16 pneumo titers, about which literature says low IGG is capable of causing auto-immune problems like those in thyorid. To remove this fundamental problem of low IGG, the son started to receive monthly IGG at Dr B's office in Darien, CT, in February 2009. Next IVIG, set for March 31, will be his about 20th since then. Fortunately, he has been free from tics in the past one year. Regarding low TSH, he has been taking beta-blocker and vitamin D, which both of which are apparently instrumetnal in keeping the rekindling of the thyroid problem at bay.

Where and when is the conference you are to take part in being held?

I like to raise the issue of "hot" condition. There are many posts from parents regarding their PANDAS children complaing of "being hot or sweaty." I have a strong conviction that being hot or sweaty is closely related to a defect in thyroid function. About one year ago, my 15-year-old Japanese son had severe vocal tics accompanied by a feeling of hotness even in the middle of winter. A tic doctor advised us to see a thyroid doctor. His TSH (thyroid hormon) reading taken at the thyroid doctor showed he has had acute thyroiditis. The thyroid doctor prescribed β blocker for the son. The prescription instantly proved effective. A few days into taking B blocker, the son'ss sweaty conditions dissipated quickly and his tic symptoms also shifted to mild levels. Combing through literature, we found a document that says that low IGG, which was also a problem for the son, causes autoimmune problems including mulfunction of the thyroid system. My son also had low IGG and failed on most of 14 pneumo titers, which provided a reason for monthly IVIG. He has been in a fairly good condition in the past year, aided by monthly IVIG at Dr. B's office. At present, his TSH level is within a normal range and also IGG levels are nornal. My reasoning is that if streps infect the son, he will not be able to launch counter defense because of low IGG and failed pneumo titers. This will cause autoimmune problems such as attacking the brain's portion governing vocal and motion control and also mulfunction of the thyroid system. And the thyroid system becomes defective, the patients tend to get sweaty or complain of being hot. Thyroiditis is also an autoimmune disease. My instinct is that beta blocker can be a quick fix for thyroid problems. So, I strongly recommend any patient feeling hot should take TSH readings. My son has been on IVIG treatment every month since one year ago. IVIG has kept his IGG at normal levels, keeping irregular reaction to strep infection and thyroiditis at bay.

I have a strong conviction that being hot or sweaty is closely related to a defect in thyroid function. About one year ago, my 15-year-old Japanese son had severe vocal tics accompanied by a feeling of hotness even in the middle of winter. A tic doctor advised us to see a thyroid doctor His TSH (thyroid hormon) reading showed he has had acute thyroiditis. The thyroid doctor prescribed β blocker for the son. His sweaty conditions (hot) eased quickly and his tic symptoms also shifted to mild levels. Combing through literature, we found a document that says that low IGG sometimes causes autoimmune problems including mulfunction of the thyroid system. My son also had low IGG and failed on most of 14 pneumo titers, which provided a reason for monthly IVIG. He has been in a fairly good condition in the past year, aided by monthly IVIG at Dr. B's office. I believe that β blocker can be a quick fix for thyroid problems like being hot. So, I strongly recommend any patient feeling hot should take TSH readings. I think being hot is also part of various PANDAS symptoms, which basically result from autoimmune problems including thyroid mulfunctioning backed by low IGG.

Basically, the problem of severe vocal tics has been resolved since the son has been on IVIG on a monthly basis. Currently, conditions are very stable with less frequent minor and mild tics. For nearly 20 months before the start of IVIG, the son's nasty vocal tics had been very very distruptive and rampant and he had been absent from school for most of the period.

KG5123 My PANDAS kid also has had a thyroid problem as well as PANDAS symptomos of very severe vocal tics. The son is curreny in a stable condition as he has been on monthly IVIG (50 grams per each time) since February this year at a Connecticut immune doctor clinic. Before the start of IVIG, he failed 12 of the 14 pneumo titers -- less than 1 and close to zero for the 12 titers, meaning he has no ability to produce antibodies that can fight off strep infections. He had also an overall IGG slightly below a normal range and subclass IGG 4 also slightly below a reference range. The parent's strong conviction is this pnumo titer failure is the primary culprit for his PANDAS symptoms. We are convinced that his weak immune defense system as shown in the failed pneumo titers has caused not only PANDAS symptoms but also tyroiditis, a symptom which also emerges in the son twice or three times a year. My conviction is based on a description I found in the explanation of common variable immune deficiency (CVID) listed in the Immuno Deficiency Fondation website. My PANDAS kid is also diagnosed as CVID due to the low IGG problem. Following is the quote from the website. ''Although patients with CVID have a depressed antibody response and low levels of immunoglobulin in their blood, some of the antibodies that are produced by these patients may attack theri own tissues (autoantibodies)..........The autoantibodies may also cause arthritis or endocrine disorders, such as thyroid disease.'' As explained in the quote, I suspect that my son's PANDAS symptoms and the thyroid problems are both derivatives of symtoms caused by the body's inability to fight off strep. I would welcom any comments. Thank you.

My suspected 15-year-old PANDAS son has his IGG and other immune functions tested. His IGG was found to be slightly lower than a reference range. More problematic were pneumococcal titer results. 12 out of 14 serotypes for the son's pneumococcal titers were almost zero, meaning, according to the son's doctor, that the son has no ability to fight off strep infections as he is not capable of producing antibodies to the 12 serotypes. This left me puzzled. If he has no ability to produce antibodies to strep, then how it is possible for his basal ganglia to be attacked via antibody cross reaction? How can we explain the stated linkage between his PANDAS symptoms, tics and OCD, and this pneumococal thing? I hope to get comments from anyone versed in this field. KG5123

Some doctors see my son as PANDAS and others just as regular TS. Being PANDAS or regular TS -- which is better for the patient? Should the parents sigh a relief when their child is declared PANDAS or declared TS? Anyone has any insight in this very fundamental but elusive problem? Thank for comments. kg5123

I also have a similear question. My son's blood was sent to Dr. Cunningham this Monday and we are waiting for results within a few weeks. Do test results come with their analysis or any conclusion? Or all you get is figures that have no explanation about their meaning or significance? 5123KG

Soon, My son is to have his blood drawn under Dr. Cunningham's pilot study in which CaM kinase II will be evaluated to check if the patient's problem is related to auto-immune defects. Are there anyone familiar with this blood test? Spedically, my question is whether or not certain results from the test can competely rule out a patient's being with PANDA. Another question is whether or not certain results from the test can completely confirm that a patient is PANDAS. Thank you very much. KG5123

Again agout chlorine effects. If my suspected PANDAS kid's tic activity revived after a five-month complete tic-free period because of the single factor of exposure to chlorine used in an indoor poor the son bathed during the summer vacation, how long that effects should continue? The son's tic condition has been worsening in an accelerated manner, especially in the past three days -- two weeks after the onset of the initial symptoms. How long we would have to wait for the symptoms to fade? May we understand that seemingly positve effects of IVIG the son has been on every four weeks have been overwhelmed by the magnitude of bad effects caused by the single factor of chlorine? Lookng for helpful comments on this. Thank you. KG

Thanks Vickie My suspected PANDAS kid Kohei had no major illness during the seven-year tic-free period. Therefore, he had no chance to measure his strep infection. KG

My PANDAS kid Kohei has been working with Dr. Leckman of Yale University. He is really reliable, knowledeable and compasionate toward patients. And he has a deep insight into the core of patients' problems. Kohei has been on IVIG every four weeks since January. The reason he started IVIG is his low IGG, which a local immune doctor suspects has weakened Kohei's immune defense system against infection. Because of IVIG, his IGG has been back to normal levels. Kohei's current medications are: tetrabenazine 50mg per day zoloft 75 mg per day penicillin (amaxicillin) 250mg x 2 perday singulair 10mg per day beta-blocker 80 mg x 2 per day vitamin D 1.25 mg per month His ASO reasings in the past year were around 300. Beta-blocker is to adjust his thyroid function. Kohei periodically contracts thyroditis. Each time his thyroid function develops a problem, he tends to feel fatigue, irritation, hotness and easily out of breath, sparking tic deterioration. The latest tic resumption followed active summer-vacation activity, especially swimming twice in a local beach and swimming in an indoor pool in a Holiday Inn hotel during vacation. I regret we should have kept him away from places that may pose risks of infection. KG

I am a father of a 15-year old suspected PANDAS kid, Kohei. I would appreciate if someone would provide me with some clue that can help me answer my long-standing question of whether he is really PANDAS or regular TS. Kohei has been with tics since the age of 3. His tics started a few months after consecutive rounds of high-fever episodes following strep infections at the end of around 3. These episodes have become a primary reason why we came to suspect that Kohei is PANDAS. Those days, our family lived in a city near Tokyo and no doctors in Japan were familiar with the concept of PANDAS, about which we also had no knowledge at all back in 1997. His tics went away about six months later. Then seven years had passed without any tics. During this period, we almost forgot about tics or TS. It was in the spring of 2005 that Kohei resumed tic activity. Initially, tics were mild and over the course of the following half year, the severity increased gradually and by January of 2006, his tics became rampant and spiraled out of control. Then, he was totally incapacitated and home bound -- shouting, howling, crying, uttering dirty words, body shaking and moving violently, forcing him to get hospitalized for three months in Tokyo. We remembered that his tic activity accelerated in intensity each time he had infection or infection-related incidents, including influenza shots, mumps, strep infections and exposure to China's notorious Yellow Sand air. By June 2006, his tics weakened. But strong separation anxiety remained in the following one year and half, during which tics were very mild or none. Japanese doctors laughed about any PANDAS things with most of them having no knowledge about PANDAS. They confidently said Kohei was just regular TS. But the parents were convinced that the regular TS theory could not explain Kohei's tic activity triggered by infection activity. His tics again resumed in August of 2007 and continued over the following one year and half until March this year. Between March this year and mid-August -- only two week ago -- he was completely free from tics. He has been on IVIG every month since January this year. But recently, he again contracted tic symptoms with its severity accelerating in the past few days. So, we are very scared. By the way, our family moved to CT, USA in April 2008. Given conditions and history mentioned above, we suspect Kohey has probably PANDAS. American doctors who saw him are mixed with some of them declaring he is PANDAS but others doubtful. PANDAS textbooks say symptoms' onset should be drastic. But in the case of Kohei, tic symptoms have not bee so dramatic or drastic. But they grew stronger gradually over the course of time passage. This is a point that may provide reasons to deny PANDAS. I would like to hear views and opnions on this point from Forum readers. Also, my long-standing question is that why there was a seven-year complete tic-free period between the age of 4 and age of 11. This has been a mystery for me. Why Kohei did not contract any problem during so long time? I hope to get comments on this point too. Thank you very much.

My suspected PANDAS son is 15 years old. He has contracted severe tic disorders in the past years. At the same time it was found just seven months ago that he has low IGG -- a bit below a normal reference range. In addition, periodically, he has developed painless thyroditis, which has worsened tic conditions. With the aim to raise his IGG to normal levels, he has been on IVIG every four weeks since early January this year. He has been also on zoloft and other medications. Because of IVIG. his IGG levels have been lifted to normal levels. He has been also free from thyroditis due to the intake of bata blockers with his THS levels back to normal. And he was completely free from tics for nearly five months -- between March and early August. In mid-August, however, his tic activity resumed and since then appeared accelerated in intensity. We could not recall any particular incident that might have affected his condition, except he swam in a local beach and indoor swimming pool -- places both of which may have posed the risk of infections. I have two questions. One is what may have been happening to the son, heavily protected against PANDAS with the combination of IVIG and the medications. I would welcome any coments from persons familiar with this kind of situation. The second question is: Is it rare to see a PANDAS kid with additional problems of low IGG and thyroid? I am wondering what would be the possible relations between PANDAS, low IGG and thyroiditis.