tln21572

Hi dcmom, You and I definitely think alike My first thought whenever something is going on is PANDAS first. I have decided not to give him the trazodone and am awaiting a call back from his pediatrician to see what other options are available. I'm going to ask for steroids for the headaches and see what other remedies might be available for sleep. Thanks for your response. It means a lot when you can discuss with other parents who understand. Thanks again

Oh my, you described my ds (17) to a tee. No drastic changes just subtle and staying in room a lot. Headaches have been going on for about 3 weeks now. The associate doctor is just trying to treat headaches, as she thinks loss of sleep is causing headaches; however, sleep issues have always been an issue with my DS with no headaches. I also think loss of sleep is due to typical teenage activities. Thanks so much for steroid idea. I will be calling his regular DR to discuss. Thanks again.

Thank you for your response. It's funny, I thought the same thing about his doctor secretly trying to tell me something about my son lol. We've tried "natural" as well, specifically Melatonin, and like you guys, it did absolutely nothing. My fear is this doctor is prescribing this without really thinking what could the interaction be with PANDAS. This doctor was an associate of his pediatrician and is not as familiar with my son. I'm not sure what we will do, still researching. Thanks again for your response it did help. Now I don't feel so paranoid myself--someone else thinks like I do

My DS was diagnosed with PANDAS over 8 years ago. High-dose, long-term (1 year) antibiotics worked for him and have only had to have periodic treatment over the years when exposed to strep. The last several weeks he has had headaches almost non-stop. He has not been sleeping well for a while now. He is 17 and wants to stay up half the night. We have tried to tell him that this is not helping the headaches, but he said he just can't sleep. Took him to pediatrician today. His pediatrian was out of the office today, so we saw an associate. After telling her him syptoms and an office exam, she suggested we try to trazodone HCI to help him sleep. I googled trazodone and was shocked to find that it is used for depression. I am not a fan of these drugs and have felt very blessed that antibiotics worked for us. What I am wondering is if anyone in this forum is familiar with trazodone and what their experience has been with this drug and their children. I am very hesitant to give this to him because I don't want to exacerbate and trigger any PANDA symptoms. Thanks for any help or information you have on this.

Thank you. I hadn't thought of this. I will call ped in the morning.

I appreciate everyone's responses. My son's peds is on board to some extent with the PANDAS diagnosis but he would rather have a psychiatric consult before treating. I don't think it is psychiatric though. In my heart I know this has got to be PANDAS (just needed someone to agree with me--thanks). Everyone (family, school, therapists) want to say it is teenage hormones, rebellion, or he was already "predisposed" to tics, OCD, and anger issues and want to "treat" the individual symptoms. When not exhibiting symptoms, my DS is very caring and considerate of others. He would never do some of the things or say some of the things he is doing and saying now. Thank you all again, I just needed someone to confirm what I already knew.

Does anyone have a diagnosed child older than 16? My DS was diagnosed 7 years ago when he was in third grade. Tics had been there for a while, then came the rages, and then intrusive thoughts. We were fortunate, after going to several doctors, therapists, and psychiatrists, a psychiatrist recognized the symptoms and asked if his behavior was sudden--could we pinpoint when he started to behave the way he was? We answered yes, and he had us go to our pediatrician for a strep titer test. DD's test came back 977 (lab said normal was 0 to 150). Pediatrician immediately started DD on ammox 1000mg a day. Within a week the intrusive thoughts were gone, behavior was much better, and eye tics had diminished to almost zero. He continued with antibiotics off and on for a year and then it seemed like the symptoms just disappeared. Over the last 6 years, we have treated with 30 day courses of antibiotics when we thought he had been exposed (mainly his eye tics would increase--no intrusive thoughts or bad behavior). Now the eye tics have increased and he has developed a nasal tic. We treated with antibiotics with no results. The intrusive thoughts have not returned as far as I know. He is extremely moody, self-absorbed, and acting out (the last rage was directed at a teacher at school and he was suspended for two days). He is not sleeping--maybe three hours a night off and on. Grades have tanked completely (he never has been a strong student but he was able to maintain a average to low C in most of his classes.) We went back to psychiatrist (our psychiatrist had left so we saw a new DR) and explained what was going on. He recommended therapy. We have gone to three therapists. The first one my son nor I cared for, the second my son did not like, and the third we both liked. However, he has a wait list and it has been three weeks since we talked to him. Went to his pediatrician to get help with the sleep problem and begged him to help. He is onboard with PANDAS however he doesn't want to treat without consulting with therapist. We live in VA and to my knowledge there are no doctors who "specialize" in PANDAS. I contacted Dr. Latimer's office but she doesn't accept our insurance. We are swimming in medical bills and just don't have the money to pay her out of pocket. There is one more medical issue we just found out about in August 2011. My DS has an enlarged aortic root. Currently it is at 3.6 cm and at 5 cm they will start dicussing surgery because should the root thin too much it could rupture and cause instant death (I have my thoughts on this as well--rheumatic fever causes heart problems--strep is a form of or can be very similiar to rheumatic fever--so my thoughts are strep has caused this heart condition. His cardiologist says they don't know why this happens and she had never heard of PANDAS. Again, my brain has connected the dots but I'm not a medical doctor.) Sorry this is so long. I guess what I'm looking for is if anyone has a diagnosed child over the age of 16 who seems to be experiencing symptoms of PANDAS and if anyone knows of PANDAS causing heart problems? My question to the pediatrician was at what point does this stop being a pediatric disorder? Any help, thoughts, ideas would be greatly appreciated. Finally, the only reason I feel in my heart this is PANDAS is because everything seems very very similar to what we went through before he was diagnosed 7 years ago. I just don't know what to do. Thanks for listening.

Thank you - this does really help! I'm trying to engage those people right now but not getting a lot of response. I'm sure people are enjoying their last week of summer vacation. Just out of curiosity...how has your son done with infections while no long-term antibiotics? I'm terrified of school right now. When he is exposed do you see an explosion of symptoms again or just minor warning signs? When that happens you mentioned you change dosages...do you go back to high-dose antibiotics for 10 days or longer? Have you ever done IVIG, PEX or other treatments like steriods or have antibiotics been sufficient? Sorry for all the questions! I'm just a little concerned about the near future and how to manage whatever comes our way!! We have been blessed, after long-term antibiotics we haven't had any major issues. When he was exposed we didn't see an "explosion" of symptoms just subtle ones, mainly the tic would become more pronounced. We would do a high dose for about 30 days just to be on the safe side (our pediatrician was agreeable to treatment with antibiotics--thank goodness). We have not done IVIG, PEX or steroids, so far antibiotics have been sufficient. My pediatrician is looking into the other treatments for me to see if we think they might benefit my son and we have an appointment with Dr. Latimer in September. I just don't want to "rock the boat" since we seem to be doing okay right now. But like you, concerned about the future and want to be prepared to handle whatever comes our way. My dilema now is at times I'm not sure if he is having PANDAS symptoms or just a symptom of becoming a teenager (he's 15--DRAMA). So far it appears to be just a teenager thing. I remember feeling terrified of the schools too, but remember you are your son's biggest advocate. I think communication, and lots of it, is the key to being successful in school. Let them know you are only trying to get everyone as knowledgeable as possible with your son's illness to make things easier for them and your son. I hope this helps. Good Luck!

Hi, I've never posted to this forum before but I saw your post and wanted to relate my experience with schools. I would definitely call a meeting with anyone who will interact with your child at school prior to school starting. This includes his teacher, resource teachers, sp. ed. teachers, principal, vice principal, nurse, and most definitely the school psychologist. Make sure the psychologist is there as she was our biggest advocate at the school. She didn't know anything about PANDAS at the first meeting but by the follow-up meeting, she had done the research on PANDAS and was very helpful in getting the administration on board (our school principal was difficult to deal with until the psychologist confirmed my son's diagnosis and agreed that the accomodations I was asking for were necessary). We did proceed with having the school test my son for any learning disabilities; however, he did not qualify for any special accomodations by law. By calling this meeting and informing everyone about PANDAS, we were able to make accomodations for my son without a 504. I made it clear to everyone, especially his teacher, that we needed to be informed if there was any case of strep infection in the classroom as soon as possible. At this particular time he was on long-term antibiotics but dosages were changed when symptoms appeared and we knew he had been exposed. I did not bring letters from his pediatrician as the school didn't require them; however, if they had required them, I could have provided that information to them. I think by informing them prior to school starting and giving them the time to research PANDAS was the key to my son having a successful year after being diagnosed with PANDAS. My son was diagnosed five years ago and there wasn't that much information available regarding PANDAS then; however, there is a world of information you can provide them to research so that they can be better informed. Definitely get the school psychologist involved and really get to know his teacher. These two things made the difference for us. My son made it through the year and was promoted to the 5th grade. I hope this helps and your son has a great year at school!!