samra

my heart goes for you Michelle. My eight year old son had severe vocal tics when he had strep in February. I asked the pediatrician to prescribe antibiotics about a month later. He took augmentin for couple of week when his tics got so mild. They were mild for a while but flared up last week. I have tried magnesium, tenex for few days with no results. He is on augmentin again for 10 days. I have been researching since then. We have an appointment with Duke pediatric neurologist.I will ask for long term penicillin. I cry everyday and spend all of my evenings doing research. I have been very careful about his diet and started no dairy and wheat couple days ago. I will try everything and will post the results.

MMC, Thank you so much for all the information. I have an appointment at Duke pediatric neurology next week. I hope we will get some help. My family contacted their doctors in France and they have suggested long term preventive antibiotics and cortizone. One other member gave me the contact information for the Raleigh group. I will contact them. I made an appointment with Dr. Harvey Singer, at Johns Hopkins, who is known for his studies about PANDAS. Unfortunately, the earliest I could get one was in October 20th. My prayers for all of the children. Looking forward to meet the families in Raleigh.

My son who is 8 years old has severe tics after the strep in February. We live in Raleigh. I took him to Neurologist who knows about PANDAS condition but he did not suggest any of the treatments you have mentioned. Do you know any doctors in this area who may help? How is your condition now? I feel helpless and would appreciate your suggestions.

I have read a lot about PANDAS and I have been to pediatrician and neorologist. Both told me that there is not conclusive evidence about PANDAS. I found this statement: “It is true that strep infections can send the immune system into overdrive, “ says lead investigator Harvey Singer, M.D., director of pediatric neurology at Hopkins Children’s, “but if an overactive immune system is truly behind this neuropsychiatric disorder, we would expect to see a spike in the blood levels of antibodies against brain proteins when children were having flare-ups of symptoms. We didn’t." I am continuing to search alternative methods, like homeopathy.

I am new at this pannel and would like to share my eight year old son's condition. He had strep in February 10th and was given penicilin as a shot immediately. The same day his tics became intense and vocal tics emerged. One of his friend's mother mentioned the PANDAS condition. I immediately took him back to his pediatrician and we were referred to neurologist. Both acknowledged the condition but there was no treatment offer. After a month later, I took him back to his pediatrician and asked for another round of antibiotic treatment and blood test for allergies and antibodies in his system. His Anti strep come back 281.7 and another result is dnaise b 170 (I am not sure about the spelling of the second one) He is still taking his two week antibiotic treatment. I see no improvement on his tics yet. We are going back to the neurologist in April and will continue to check his antibodies in his blood. I found out about this condition by chance. And it is all of my research and effort for any treatment. Now that I know it, I remember him getting sick during summer (he was with his grandparents)and his tics were intense for a while. Perhaps that was another episode. Phalasmapheresis sounds like another option but it is scary to me. It has been very a very painful month. I would like to record his progress so that other parents may get some comfort as much as I get from all of your notes.

Malke, Thank you so much for your response. As soon as they confirmed the strep, he had penicilin shot the same day. I have been reading about PANDAS but didn't see any conclusive treatment methods other then what the neorologist told me -plasma exchange. He is defient and very argumentative in general. The only difference between now and prior to strep is his more frequent vocal tics. I really appreciate your response. I feel so helpless and sad. I guess this is the normal reaction of parents. Just sharing information with people who has same or similar problems helps. Thank you again. Samra, Have you been over to the ACN PANDAS forum to ask this question? I'll give you what I know, but you may want to see what other people say as well. Did your son get antibotics for his strep? Does he have any other symptoms? Has he had a sharp rise in OCD issues, is he spacey or hyper all of a sudden, does he seem defiant or have rages over small things? Since you have a documented case of strep, it's likely that there is PANDAS involved and I personally wouldn't wait around to see if the tics went away. Go to http://www.webpediatrics.com/pandas.html or http://www.pandasresourcenetwork.org/home.html and see if this looks like your kid. My dd had all sorts of PANDAS-like symptoms that have all improved on abx and ibuprophen -- all except her tic. So, if your son only has a tic, perhaps it's something else? However, like I said, since you have a clear strep event where things got worse, then my opinion is to definitely look into PANDAS. I hope this is helpful, and please do go over to the PANDAS forum and see what the others have to say. Best, Malke

My eight years old son had minor tics, which were usually lasted a week or two. About a month ago, he had strep infection and his tics flared tremendously. He is making noises frequently, like every 3-4 seconds. I took him to neourolgist and we did talk about PANDAS. He said 25% of the kids have tics and it may go away after a while. I have been reading on this website and totaly confused about what to do. Where to start? Please help!