Rowens1214

we are in Wilmington, beach town

thanks

Cant find the link to the doctors page. can someone help

our Dr. recomends xylitol to use in any form. i buy the "sugar" and put it in tea. we also use the mouthwash and gum.

praying for you and your family. keep us posted. Robin

I was just bumping this post in hopes of some suggestions. My youngest son is still ticcing but not showing any other symtons of PANDAS. Is it possible to have one child with PANDAS and one who could just have TS or could this be early signs of PANDAS. My youngest had tons a strep from 15 mos to 5. he is seven now and i guess i worry so because i have been through this with my 15 year old and dont want to miss this window of opportunity to treat while he is young. Is it possible to just tic for a while and then later develop more of the classic PANDA symptons? My 15 yr old son has the classic PANDAS Symptons when he was 7-8. Anxiety, night fears, OCD. tics. He is just now getting treated for PANDAS. The only test i am waiting on is the Cummingham. Just curious what others have gone thru since we clearly do not have one of the "overnight" onsets and he is neg for strep at this time. i just feel so out of control and feel like i to need to be more proactive. help!! Robin

Just got all my sons test back ( except for the camk) the culture and titers were all negative. I think my Dr. thinks i am just being paranoid and looking for things that are not there. tonight my son was doing neck bends and neck stretching and some mild jerking. This is day 5 of the zith and I dont know what to do now. His legs were hurting him again tonight and last night he complained of ankle pain. Motrin helps his leg aches. I did mention to her that maybe we should test for lyme and she said he is not showing any markers for inflamation so she would not consider it. Should i push this with her. I feel like she will do it if i ask again but i just dont know what to do next. My older son is doing very good on his antibiotics. (He played his first jv football game tonight!!!) If we do go ahead with Lyme testing can anyone tell me the best test to run. I thought i would handle this better with a 2nd child showing symptons and i just am so spent that i seem to just fall apart and want to hide in my room and cry. I am not doing that and staying strong for my boys but it is the not knowing that is so so hard. any suggestions would be so appreciated. ( oh yaa my son has been dry through the night 3 out of the last 5 days. this is a big deal for him. He is 7 and usually wakes up with a very wet pull up. any thoughts on this. Robin

elizabeth. i was wondering if you had neg strep titers and neg strep cultures? Asking because my son who clearly shows signs of PANDAS has neg titers. He has only tested positive for strep once in the last 2 years and it was type F. I am thinking of asking the his dr if we should pursue the Lyme testing since something is going on but it does not seem to be strep induced. hope this makes sense. He is doing so much better now that he has been on antibiotics for 3 months. Robin

I have been reading another thread about leg pain/limping. just curious about something. I had tons of strep until age 17/18. As long as i can remember i have had terrible leg cramps/pain at night. I remember when I was little waking up with this horrible pain. my 7 years old who is just starting to show signs of tics has leg pains at night just like i do. My 15 year old who does have PANDAS has never had leg pain. just curious what others on this forum have going on with this.

hi, my kids 15( starts 8/23) and 7 starts 8/25. i hope all goes well for them. Have you started? I hope and pray that you will have a great year. Robin

kimballot. my 15 yr old did have neg titers but has PANDAS. I know this is a question that goes back and forth. His Dr is great and is treating my son for PANDAS but still mentions every time we go in that she wonders about the neg titers. My youngest just had blood drawn last week to check his titers and i feel certain his may be neg too. Is there some documentation or posts you could point me to to show my dr (and husband) i do know on Dr K's website he mentions this. My Dr seems to be big on numbers. says so she can measure success, failure of treatment by numbers. I keep reminding her that history and symptons and also very important. any help with this would be so appreciated. The only number we have is his CamK (151) all his titers were neg. His cultured strep was positive (type F strep????) Thanks Robin

Hi i wanted to give an update on my son. He went to the Dr. yesterday and she did a quick strep which was neg. She also is sending off a culture. She drew blood to check his titers and streptozyme. She drew enough blood to send in for the cunningham test. I have only noticed the jerking tic once since thursday night. My sons throat was a little pink but i really dont think he has strep. She also gave us a prescription for azith but only for 5 days. I feel sure she will give me some more if i see an improvement in a few days but regardless i think i will call and get enough for at least 10 days. If this is PANDAS i want to catch it early and not have my youngest go thru what my oldest son has had to endure. I love megs ideas for the "habbit rev" i think i will give this a try. Will keep you all updated on our progress. Robin

thanks for all the replys. i am trying so hard not to be paranoid. but after dealing with my older sons symptons for 8 years i just cant let it go. I have a great Dr. but she seems to stuck on the fact the my older sons titers were in the normal range. She finally came around to the PANDAS ideas when his CAM came back at 151. We have an appt. at 2:30 today so I will let you all know how it goes. I just hate talking about everything in front of my youngest son. I dont want to scare him or have him think he is not normal. school starts in 3 days and really need him to have peace with going and feeling o.k. My oldest has struggled with school every year since 1st. He starts 10th in a few days and is already saying he is not going. I need just a little more stress!!! robin

After i wrote that he does not show ocd symptons i began to think about some things that could be OCD. my older son only has the intrusive thoughts and some minor sensory issues so i have not been looking for other things. MY little one constantly holds onto his genitals i am constantly telling him to get his hands out of his pant. could this be OCD? He also spits everytime he goes out the front door and usually when we get out of the car. i guess this could be OCD symptons. they dont seem to bother him and i am really trying not to see things that are not there!! He has never had sep anxiety or fears that iknow of. oh its just does not seem to end in my house. thanks so much for replying. its helps so to know you all are out there and i am not alone in this. Robin

Isabel, thanks for your reply. the thing is everytime i get him tested for strep it is neg. His older brother was the same way. He would have symptons (sore throat etc but strep was neg) my little one does not show any signs of a sore throat etc he is just ticcing. I did give his Dr. a call just to see if she was open and she is in today. so I am going to take him and get a strep test done and hope we can get som abx for the weekend. Do you know of any children with PANDAS who just present with tics and not the ocd. My son has always wet the bed at night but no ocd, fears, sep anxiety etc. thanks again.

My 15 yr old has been diagnoised with Pandas. I have posted several times about him on this forum. My youngest son who is 7 has been kinda ticcish off and on for the last few months. He had throat clearing and hand snapping and a few very minor other things that no one noticed except me ( why does it seem just moms sees these things) anyway. around july 4th he got an URI and was put on zith . Within 10 days he had stopped doing all his tics. After 20+ days he would every once in a while clear his throat once or twice a day but nothing like before. Well Yesterday in the car he started doing an upper body jerk. He did it 5-6 times in a row. i Asked him what he was doing and he said " i dont know but i cant stop it" Well i got the sick sick feeling in my stomach and wanted to cry and throwup. When we got home i watched him like a hawk and he never did it again until i put him to bed. He was very restless and wanted to talk and did do the motion one time. My gut feeling says call the Dr. right away and get antiobiotics. His brother told me he did not think it was a tic. He said you just cant tic like he was doing in the car and then stop for hours like he did last night. I am trying not to panic but it not working....... i really could use some advice. I dont think his Dr. is open on Fri. I do have a prescription for amox that his older brother did not finish ( was not working for him) just dont know what to do and my brain is going 100000 miles a min. Robin

I got my camkII results 2 weeks ago also. still waiting on others

I got the results back for the CamKII. my sons number is 151. I was a little surprised about this as he was doing pretty good the week we had the blood drawn. So I guess i am asking if I can take this as confirmations that my son does in fact have PANDAS. he has all the symptons but has had negative titers everytime we have tested. During his last increase in symptons he did test positive for strep. He had not complained of a sore throat but his throat did appear red and had swollen tonsils. It has been a long road looking for answers and I want to feel confident that we have in fact found the answer to my sons 7 years of struggling with tics, OCD, anxiety, fears etc etc. robin

so happy to hear the good news. praying things will continue to improve!!!

I take both my kids to a chiro. I started taking my youngest (non-pandas) son, because he had constant colds, ear infections. Having regular adjustments helps boost the immune system. My older son starting going after a sports injury. It has really helped a lot. my younger son is doing so much better. When he does get a cold/cough it only lasts 3-4 days. My older pandas son benefits also with the immune boosting benefits but swears it helps stop one of his neck tics when he has an increase in this tic. ( bending his neck up) I have been going to this Dr. for 2 years and now we only go 1x a month for my youngest and my oldest goes 2x a month. Also insurance covers this ( just a small co-pay) He also does nutritional testing etc but we had been down this road before and had a pretty good supplement program in place so we did not redo any testing with him.

oh i hope things go well this time around for you. Do you get your strep kits from your Dr. Robin

Hi Lynn, i hope things start to improve for you soon. I know what you are going through. I want to get excited about family vacations etc but i start to worry about the what ifs and just end up stressing myself and kids to the maxx. My son tics more when he is excited about going on vacation, new places etc. Like another poster said, if your son is happy and relaxed then try and enjoy your time. I know its so so hard to do. We are leaving on a vacation next Sunday and I am already thinking about the what ifs. But i have to stop myself and and think positve and enjoy myself and let my kids have fun.

thanks for the kind words. I cant stop thinking that when the social worker said my son needed to be placed outside the home for intensive therapy that i wanted to jump up and done and say i will go. I will leave and get therapy!!! (just kidding) I have to laugh... its been another bad day and I am sitting here dreaming of running away to a tropical resort. I know that better days will come. With all that i am i just know that we will look back at this time and be better people because of what we have gone through. Greater things are yet to come!!!!!

just wanted to post an update. the social worker come to the house last night. my son has been going down hill again. and we had another throat culture taken yesterday due to a red throat and white spots on tonsils. So he was in prime conditions when the ss worker came. I had my papers on PANDAS and tried to explain to her about OD, OCD and rage fits that can go along with PANDAS. told her he may have strep again etc etc. you can imagine the looks but she was very very kind and listened to our story. I thought all was good and she would drop the case until she mentioned that it seemed like my son was just being a difficult teen and needed to be placed outside the home for intensive therapy. so in my mind i imagined myself flying off the couch and shaking the women but never the less i sat very still and in a calm way asked her if DSS would consider removing my 10 yr old nephew who has diabetes from his home when he starts crashing from low insulin. I told her how i have been with my nephew and he will get very angry, defient and moody til the point he will not let me check his blood levels and starts crying and screaming. I explained to her that PANDAS rages were kinda like that. That it is an illness and not just a moody teen. I think she started to understand but mostly decided it was time to leave when my youngest son let my 2 large siberian huskys in the house and they started licking her and getting hair all over her black dress. the kicker was when i told her not to let the dogs give her anymore kisses because one of them has tested positive for strep. I know she thinks i am a total nut case and at times over the last 7 years i have felt like i have lost my mind. She gave us her card and said she would follow up by phone.

colleen, he is taking 2000 keflex a day. I have added in advil and i have been giving him inositol everyday for 1 month. I have been giving him 3 1/2 tsp a day. He did miss a few doses this weekend. Do you think it could affect him that fast. He is 175 5'11. does it sound like a high enough dose of inositol The counselor is not a school counselor he is a LPC. We had to take my son out of school 2 months ago due to his extreme anxiety. He is going to a very small private school only 2 hrs a day right now. The counselor is "worried" that someone will end up getting hurt when my son is raging. My husband and I have both been pushed by our son during his very bad times. Last night was just a lot of screaming and crying. I understand the counselors concerns but i dont know what he thinks DSS can do. They will probably recommend counseling, anger management, CBT. all of which is what i wanted to get from our counselor!!!