Tigger013

From what I read, this is definately a tool to use. I currently am treating my own just turned 13 yr old daughter with a Cognitive Behavioral Therapist. She has learned breathing techniques and relaxation methods that work for her. Also, during the course of 5 visits, my daughters confidence has greatly improved. She tries to focus an changing her behavior without us constantly reminding herself. This makes her in control of self and her confidence. She has had come luck with keeping her hands going to her face. I would assume this is a long process and not over night. But this is the first thing that we have been working with that has some success. We are next seeking PANDAS testing just to rule out, then will try supplements and hope for the best. Her neuro-psy doctor does not see her as a patient for med's. Too healthy, active and bright. It still is heart wrenching when she has her ticcing bouts. Good luck and give it some time.

Hi Faith, She has always been up to date on her vac's, but never did I identify or can think back what her responses were after the shots. The only thing we never had done, was the flu shots. I wish I new what to look for when all of these shots were given. Thanks

Hi Tigger, After reading your post, I feel like I am reading my exact story. I have a 15 year old and have been dealing with the same issues since he was in 3rd grade. I am just now becoming aware of PANDAS after finishing Saving Sammy. I am calling the pediatric neurologist to start testing for PANDAS and I have no idea where to start either. I have read all the posts in this forum on parents new to PANDAS. On Monday, I plan on asking the doctor to run blood test for Strep and go from there (any other recommendations from the doctor or from people on this forum will be run also.) The 1st step in my plan is to see if strep shows up in the test and to see what his titers are. If strep does show up and low titers, I will come back to this forum and read what the next test is that I should be asking for. I am SO OVERWHELMED and feel lost because I don't know enough about this as far as being able to ask the doctors to test for what I want. I have a son who is suffering severely while trying to succeed in school and continue on with his sports team that he has invested everything in. Please keep posting and let me know the steps you are taking. I am recording every bit of information I get from here as to know what steps to take, keep taking, etc. There are so many other things I have just discovered that could be at the root of the tics, OCD, learning difficulties, etc., it is hard to even believe. Glad you posted. Our children have even had the same ilnesses. I have currently started supplements, so far haven't seen a huge difference, but I was supplementing based on a diagnoses of Tourette's/tic disorder and someone had pointed out that the supplements may not help if the cause of the symptoms are from a Pandas infection...makes so much sense! So here I go. I've been down every path except the Pandas, so please let me know if I can help in anyway. You have helped me just knowing our stories are so similar. Hang in there. Our kids and all the other kids that have to bear this awful burden on their sweet shoulders will get through it. We will make sure of it. Please read the reply from Buster on my thread! Wow, what a load of information. Maybe you can send it or copy it to give to your doctor on Monday.

Wow, thank you for all that information. I will bring it to my doctor and let him know these facts-very beneficial to help my child. Also, I still am very skeptical about PANDAS for my child, only because it seems that PANDAS patients have a huge motor tic and OCD issues. Looking at the symptoms, my child fits only a very few. Still keeping the door open and will get the testing. Did you say that the blood work is a specific test? Would I need to know what test it is called so to verify that my doctor will be giving me the correct one? Same goes for the throat culture. I would assume my child does not have strep now, because she has been really healthy for quite some time. Perplexing information and will continue to follow the threads. THANKS:)

Hi Tigger, After reading your post, I feel like I am reading my exact story. I have a 15 year old and have been dealing with the same issues since he was in 3rd grade. I am just now becoming aware of PANDAS after finishing Saving Sammy. I am calling the pediatric neurologist to start testing for PANDAS and I have no idea where to start either. I have read all the posts in this forum on parents new to PANDAS. On Monday, I plan on asking the doctor to run blood test for Strep and go from there (any other recommendations from the doctor or from people on this forum will be run also.) The 1st step in my plan is to see if strep shows up in the test and to see what his titers are. If strep does show up and low titers, I will come back to this forum and read what the next test is that I should be asking for. I am SO OVERWHELMED and feel lost because I don't know enough about this as far as being able to ask the doctors to test for what I want. I have a son who is suffering severely while trying to succeed in school and continue on with his sports team that he has invested everything in. Please keep posting and let me know the steps you are taking. I am recording every bit of information I get from here as to know what steps to take, keep taking, etc. There are so many other things I have just discovered that could be at the root of the tics, OCD, learning difficulties, etc., it is hard to even believe. Glad you posted. Our children have even had the same ilnesses. I have currently started supplements, so far haven't seen a huge difference, but I was supplementing based on a diagnoses of Tourette's/tic disorder and someone had pointed out that the supplements may not help if the cause of the symptoms are from a Pandas infection...makes so much sense! So here I go. I've been down every path except the Pandas, so please let me know if I can help in anyway. You have helped me just knowing our stories are so similar. Hang in there. Our kids and all the other kids that have to bear this awful burden on their sweet shoulders will get through it. We will make sure of it. Hi, Thanks for responding. I feel at a loss sometimes for my daughter. I thank God everyday that she is so strong and as confident as one could be. Seeing her interact at sports and being a leader makes me so proud of her overcoming some of these emotional difficulties. I just wonder how are these poor children able to wake up everyday and deal with this? They are true fighters:) As far as your response, are you saying that your son does not have full TS, but Chronic Motor Tic and OCD like my daughter? I know there are variances of these, but all I read is about TS more so than just motor tics. She never has had to vocal part. I assume the same treatment? There has to be better information out there than I can find. My daughter has never had any flu vaccinations. I never thought they were really necessary, maybe because I never had them and we are all generally really healthy people. This latest one, I chose not to do it because I saw that one cheerleader (either Pro or college level) end up getting a movement disorder because of the flu vaccination. Ugh Scared the begeebees out of me. Normally I would say, yeah, get the flu if you think you would benefit. No more. I cannot bare the idea that I could cause more harm than already suffering from. Anyway, all of her routine vaccinations have always been administered. Unfortunately, never did I connect the dots to when this started and what happened before it started. I wish I would have known to make some connections then. A little too late for the past. I have brought her to two different neurologist (pediatric) at Children's Memorial, in Chicago. First one at 8yrs old, then diagnosed with motor tics. They were very mild, therefore no treatment needed. They did change a lot, most people did not see what she was doing. As of this past summer is when it seemed to really be more expressed. Probably because some of the movements involve her eyes, hands to face and neck. The 2nd Dr said also motor tic, but some OCD. She counts in her head a certain number of times, or does a motion or touches something. Nothing yet too horrible, but still enough. We are working on training herself to be the BOSS and tell her if her body says to do it 3 x's to say no only 2 x's. This will be a process, but she is so willing to challenge herself. What is so weird, is when she is involved with sports, she is a normal girl. No signs of anything. Now if we are sitting quietly in church, we must sit in the back row and remind her to relax and breathe. This really helps her to get a grip. We just took her to a neuro-psyc doctor. He was wonderful. He took two test to rule out any motor or attention deficit issues, which she passed as expected. But also, he talked to her clearly and had her describe what she is doing, how she does it, etc. I was really impressed. He is the one to suggest PANDAS testing (blood work and throat culture). So we are at this stage now. Hopefully we can get in there soon for that testing. I am relieved, because my regular pediatrician would not help in that area of blood testing. Said you cannot find out anything from that?? So is the blood work something different and is it more costly? If you find out about your blood work/strep test, keep me posted too. Good luck and have a good weekend.

Does anyone know if I go to a specialist or regular doctor to test for PANDAS? What tests am I requesting to confirm potential PANDAS? Also, what are the chances of having a child that was diagnosed with only mild Motor Tics at age 7, then at the age of 12 and increase of Motor Tics and newly diagnosed OCD? She has had several different ear, sinus and throat infections over the course of the years and since the summer when the motor tics started to seem to really increase she was on anbx for sinus infection. I did not ever hear of PANDAS until reading Saving Sammy. I want to save my own child, but not sure how. There are days when she is really good, then sometimes at night they might increase dramatically. We are working with a CBT to help change her behaviors to a new tic. Seems to help a little. If anything, she loves the doctor and makes her feel really good about herself. My daughter is very bright and atheletic. Once I rule out PANDAS, we are going to go the supplement way and see if that helps. I am wondering too if because she is 12 years old, that now she is at the peak of ticcing. Maybe this is what typically happens, the heightened behaviors and maybe hopefully will be reducing over the next few years. Any info about types of testing, please let me know Thanks to all of you out there. My heart goes out to all of these beautiful children.

Did you have any success with Dr. K? I want so desperately to help my daughter, but feel that the hype is going to let me down. Any suggestions, please guide me as to what I would expect from the consult in person. Thank you.

I had just recently e-mailed her and she responded right away. Try resending her again. You can also send her partner an e-mail. They are working together <Kathy-Alvarez@ouhsc.edu> Know I was told that the test is $400?? Ugh, wish there were other options. I want to test, but the whole money thing and then find out the results are not the direction I was hoping. Good luck. Any new info, please let me know.

Hello- Does anyone know if Dr. K in Chicago has appointments that are not insured. I set up an appointment and it cost $350 for consultation and it needs to be sent in before the appointment is made. I was hoping that there is some doctors in the Chicago area, including Dr. K, that accepts insurance. I want to treat my child for potential PANDAS, but at this rate I don't know where it will end with the final total and no coverage. Is this common not to find doctors that do this with out insurance coverage? Any suggestions, please send them my way. Thank you.

Thank you for responding:) I actually contacted his office to make an appointment and was told that $350 needs to be sent before appointment date. This covers the consultation. I wonder if this is normal that no insurance will cover these visits. I want to save my child from suffering, but the cost is going to choke us. The fear we have we spend all this money to find nothing. This is a real thought, but will have to do it to rule out PANDAS. Sometimes I feel that we are reaching with this diagnoses, just to solve it. The feelings that go through my head daily makes me frustrated that the medical world would not help patients like my daughter. Please respond if you know that any treatment for PANDAS is or is not covered. Thanks again for any help.

When asking the pediatrician, they tell me a blood test will not diagnose me-ugh She has had strep throat in her life and before the summer influx of tics, she had a sinus infection and was on antibiotics. Did not know of anything about antibiotics reducing tics, so never identified if they helped or not. She had a tetanus shot. No signs of irritability, bed wetting, temper tantrums, sensory, behavioral issues ever. Do you know of PANDAS doctors in Chicago, IL area? And as far as blood testing, any suggestions as to who and where? Does it have to be in a study to find results. Any help, thanks.

I am writing in hopes someone has some experience with what I am writing about in hopes to cure or at least minimize my daughters diagnoses. My Daughter stated to experience simple motor tic movements when she was 7. They waxed and waned without most people identifying it. We brought her to a neurologist and diagnosed her with motor tics. Over the years, we never treated her medically as suggested by the doctor because they were so mild and she was highly functioning and healthy overall. Since the summer of 2009, age 12, she began to experience many motor movements. Now they were very noticeable and causing sadness. We brought her in to the doctors again and they said see another neurologist, so we did. This time they gave the diagnose of motor tics and OCD. She is doing about 8 - 10 different movements at once and starting to have intrusive thoughts. She needs to complete her movements without interruption or she has to start over. She whispers her name at the end of her sentence (nobody hears-was told tic is OCD, not a tic?), she touches things or wipes things a certain number of times. We started to bring her to a CBT to help her identify her movements and maybe teach her to change her tics to be less obvious. We have reached some success, but not nearly enough. Reading a lot of useful information online, we would like to treat with supplements, rather than SSRI's. I haven't read too many SSRI's without negative effects and am searching every other option first. I am not against SSRI's, just hoping for alternatives first. My daughter is very active, high honor roll student, fun and loving young girl. I would hate to make any rash decisions and make her life more complicated. I was told to look into PANDAS, but she does not have some of the criteria (immediate onset of behavior), seeing she has experienced motor tics since 7 years old that were mild. I would say she is moderate at times throughout the day. They are times, especially at night, or in church like situations, where she cannot control her tics at all. They are so complex, it saddens me so much as why she has to deal with this. Some students are making comments, I am sure they don't understand her diagnoses. We recently brought attention to all of her teachers and social workers. They were completely surprised with the information, never noticing any problems with her having tics in class. She obviously is compensating for it at school and maybe why she comes home and lets them out. As said, she has daily sports, which probably helps keep her mind focused on other things than tics. We try breathing techniques and relaxation methods which help a lot too. Over the holiday, for 2 weeks, rarely did we notice many motor tics. How is this possible, maybe too busy-a lot of entertainment on her mind instead. If anyone has any avenue to investigate to help my beautiful daughter, please post for me. Also, does she even sound like a PANDAS case, or let that one rest? No other medical conditions in her past, overall a very healthy young child. Sorry for such a long post, but wanted to give all of her life history to help in cure.