kc35

I wish I could help but I am new to all this. But I just wanted to send out a hug. Take one day at a time and with the help of those here and the doctors you will get your son healthy again. I appreciate you responding to my questions considering all you are going through.

I am definitely getting a second opinion about the asthma. In the past whenever my DD had a cough with wheezing it was determined to be walking pneumonia (I think that is caused by mycoplasma) and prescribed azithromycin. Although there have been times ,like this spring, when she was determined to possibly have walking pneumonia and it went away on its own. However now I wish I had treated it with az to prevent a possible autoimmune attack of the brain! If anyone knows of an LLMD, integrative Dr or PANDAS Dr near western PA please let me know. I tried calling one integrative Dr around Pittsburgh and even left a message but no response in over 2 weeks!! Philamom sent me some names near Philly but if possible I would like to see someone closer to western PA. Thanks for all info and all advice.

I went to the ped Dr who knows about PANDAS today. He did not think my DD fit the description of PANDAS. He has seen it before and has treated children with it. He would not even entertain the possibility of doing any blood work, even though she currently has a cough and low grade fever. He pretty much said my DD has some form of Tourettes and that I need to relax and accept it. He thought my DD had asthma since he heard a wheeze and prescribed an inhaler and suggested the flu vax (no thanx). Probably going back to my regular ped soon to get a 2nd opinion about wheeze/asthma. I feel like I'm going in circles.

I am in western PA but I have spent a lot of time in eastern PA so I am familiar with the area and willing to travel there if need be. I am seeing Dr G (a pediatrician) who was listed on the PANDAS network website. I called their office and they did say that they know about it but that it is a newly recognized disorder.

I am seeing a ped who knows about PANDAS on Monday. How much they will know, I have no idea. I am not sure what tests I should insist on. I have gone through the posts but it is very overwhelming. It seems like no matter what test one does, even if it is negative, still doesn't exclude the possibility of PANDAS by strep or by Lyme disease. Since I am in the beginning stages of this path I would like to know what tests do you all think are the most important in determining whether it is PANDAS. I have deer in my backyard everyday so Lyme is not an impossibility. So far I have seen strep titre blood test, C3A/C4 test, mycoplasma, Western Blot for Lyme, Cunningham panel, Igenex panel. Which tests are the best initial tests to ask for? Are all cases of tics/Tourettes really some form of PANDAS by strep/lyme/mycoplasma....? I know no one really knows the answer but I would appreciate any thoughts on this. Thanks in advance.

I made an appt with a Dr, who is a pediatrician, that was listed on the pandasnetwork website. However I am wondering is there anyone here who has good experience with a PANDAS Dr in PA? I am in the process of trying to find out whether my DD possibly has PANDAS. Thanks.

In the last month my DD tics started up again after a long absence. She went from simple eye darting/twitching last year to arm bends and whole body spread eagle stretch in the last month. Has anyone seen simple tics become complex tics in such a short time and in such a young child (6)?

The Dr called to say the 48 hr strep test was negative. My DD came home from school looking fine and somewhat chipper, but still ticcing. I am seeing a PANDAS literate ped (listed on the PANDASnetwork web page) on Monday, which is only 5 days from now. I believe she most likely has multiple chronic tics or Tourettes and I am seeing a waxing period, which is what the neurologist's nurse said when I called her yesterday. However I am taking everyone's advice here and on the Tourettes group to determine if it could be PANDAS. I know last year when all this started, they ruled it out. Thanks to everyone for their advice.

My husband doesn't want to give my DD (6) abx until it is proven she has an infection. I tend to agree with LLM about trying the 10 day course of amoxicillin to see what happens but my husband disagrees. I will find out the results of the 48 hr strep test tomorrow. She seems fine except for alittle cough and the tics, which are stressing me out. Fortunately I got an appt with a PANDAS literate pediatrician on Oct. 7. What tests besides the 2 mentioned in one of the posts - ASO and Anti DNase B should I ask for? I hope this Dr is willing to run the tests. Thank you so much to all who have given me advice, I really appreciate it. I hope I am making the right choice by waiting.

The neurologist's office just called and they said that they do not believe in PANDAS. My previous neurologist who left the area did believe in it. I found a pediatrician in my area who is listed on the pandasnetwork site. I will make an appt with him as well. I just want to make sure that I am understanding this correctly. If my daughter has PANDAS then a 10 day course of amoxicillin will likely make her symptoms improve, even if temporarily? I believe that she currently will not end up having a strep throat infection and that the 48 hr test will come back negative. Is there any harm in giving her an antibiotic, if she doesn't have any kind of obvious infection? She's only been on a z pack once before. The neurologist's office reiterated that 200 mg MgO and 100 mg B6 can improve tics. Does anyone here have any experience with this? Thanks.

Last year my DD had an eye darting tic. We saw a neurologist who tested her blood for Strep, then EEG and MRI. Everything came back normal and we were told that she has tics. The eye tic went away within 2 months. She was sick a lot last year, but never had antibiotics for anything. Within the past month and a half there have been a big increase in tics . First eye blinking, then arm/finger stretches, full body stretches and even jumps. I've also seen an increase in moodiness and a little OCD type symptoms. When asked why she does these things, she says she has a feeling to do them. She has been sick for the last 2 weeks with a little cough and low grade fever/night sweats early last week. A girl in her class tested positive for strep. So I took her to the dr yesterday who did the rapid strep test but it turned out negative. We are waiting for the 48 hour test. He prescibed amoxicillin just in case she has strep and if she doesn't then he said stop using the amoxicillin. We have not given her any yet since she seems fine. My question is do these symptoms symptoms sound like PANDAS? With PANDAS does a 10 day course of antiobiotics improve the tic symptoms? I'm wondering whether I should just give her the antibiotic to see whether she improves even though she doesn't seem to have strep and her infection/cold seems a lot better. I am seeing a neurologist who specializes in tics in Dec. I am not sure whether they are PANDAS literate. I called their office to see whether they they think she needs to have a blood test for strep. I'm waiting for a call back. I know my pediatrician won't do a strep blood test since he didn't even know what PANDAS was. Thanks.

Thanks to those who responded to my post. Last year when the eye darting started she had a blood test for strep and it came out negative. Therefore she was cleared for PANDAS. Since she was sick last week (fever, malaise, slight sore throat) and I found out one of her classmates had strep throat, I took her to the dr today. They did a rapid strep test and found it to be negative. The doctor is sending it out for a a more accurate analysis. My DD seems a lot better so it doesn't seem that she has strep throat. If she had strep throat wouldn't she be getting worse? Is there some other types of infections I should get her tested for, that cause tics? Her tics were a lot worse this weekend than previously. The last several days I let her cheat on the dairy and she had more gluten. I will try again with the diet but it will be tough since she loves dairy and wheat. It will take me awhile. I asked my Dr about IgG testing and he didn't even know what it was. Does anyone have any information about whether Mg or B6 helped reduce tics? I know there was a study done by researchers in Spain that showed some good preliminary results but I can't find the final study. I am afraid of giving her Mg and B6 because I don't want to make her tics worse. Whenever I give her more Mg rich foods, I sometimes think she becomes more wired but I can't be sure. Has anyone tried applied kinesiology as a form of allergy testing? Thanks.

Thanks to those who responded to my post. Last year when the eye darting started she had a blood test for strep and it came out negative. Therefore she was cleared for PANDAS. Since she was sick last week (fever, malaise, slight sore throat) and I found out one of her classmates had strep throat, I took her to the dr today. They did a rapid strep test and found it to be negative. The doctor is sending it out for a a more accurate analysis. My DD seems a lot better so it doesn't seem that she has strep throat. If she had strep throat wouldn't she be getting worse? Is there some other types of infections I should get her tested for, that cause tics? Her tics were a lot worse this weekend than previously. The last several days I let her cheat on the dairy and she had more gluten. I will try again with the diet but it will be tough since she loves dairy and wheat. It will take me awhile. I asked my Dr about IgG testing and he didn't even know what it was. Does anyone have any information about whether Mg or B6 helped reduce tics? I know there was a study done by researchers in Spain that showed some good preliminary results but I can't find the final study. I am afraid of giving her Mg and B6 because I don't want to make her tics worse. Whenever I give her more Mg rich foods, I sometimes think she becomes more wired but I can't be sure. Has anyone tried applied kinesiology as a form of allergy testing? Thanks.

My 6 year old DD had an eye roll tic last fall. She was evaluated by EEG, MRI and we were told it was a tic. It went away and most of last year she did not have any symptoms that really concerned us. Then in the last month she started with a simple eye twitch, that has escalated into finger/arm movements (ie) sticking arms out and bending them, finger clenching), leg lifts, and most concerning a full body stretching tic which is really awkward. She doesn't have much vocal right now - just some throat clearing here and there. She has not been diagnosed with Tourettes, however I am afraid that is going to be the case. We are seeing a neuro who specializes in movement disorders in Dec. Last year the neuro we saw suggested that if things got worse, consider CBIT therapy and/or 200mg MgO or Mg gluconate and 100 mg B6. I have made an appt with a CBIT therapist for Oct since DD indicates that she has feeling to do these movements and doesn't like them. I have purchased Nature Made MgO and was prescribed the B6. We have not given her any yet. We have just tried to increase Mg in diet with pumpkin and sunflower seeds, almonds, coconut juice etc. I am wondering have people really seen improvement with using Mg and or B6? On this site I have read that MgO is useless and I can't find Mg gluconate. What type of Mg and how much have people here had success with? Also I have read that many have done IgG sensitivity testing and other testing and eliminated gluten and dairy. We tried eliminating dairy this week but didn't see her tics disappear, although she was sick all week. We have tried low gluten. I am confused about how to safely administer the gfcf diet. How do you ensure that they are getting enough Ca on a non- dairy diet? With going gluten free - is it better to just stick with rice based products since corn is also an allergen? Also can anyone recommend a good homeopathic/naturopathic doctor who will do IgG, mineral deficiency testing? I am willing to travel wherever I need to. I went to a traditional allergist and they were only willing to do skin prick test for environmental allergies and she was positive for dust mites. They wouldn't even consider food allergy testing. Sorry for the long message, just need some help. Thank you. kc